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Recovery After Stroke

Recovery After Stroke
Recovery After Stroke
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  • Recovery After Stroke

    Life 3 Years After Stroke: Pete Rumple’s Remarkable Road from Wheelchair to CrossFit

    02/03/2026 | 1h 23 mins.
    Life 3 Years After Stroke: Three years ago, Pete Rumple was in a hospital bed, weighing 337 pounds, unable to walk, unable to talk, and completely paralysed down his right side following a massive hemorrhagic stroke. He was on 17 medications and had just spent his first night as a wheelchair user. By his own admission, the first year was so dark that he didn’t want to live.

    Today, Pete does CrossFit every day, has lost 150 pounds, is off 15 of his 17 medications, and is about to launch a new business at 61 years old.

    This is what life 3 years after a stroke can look like and, more importantly, how Pete got there.

    The First Decision: Control What You Can

    Within days of his stroke, while still in the hospital, Pete made a choice. He couldn’t walk. He couldn’t use his right arm. Doctors were managing everything around him. But he could control one thing: what he ate.

    “I got to change everything,” he says. “And as I lay there, this was one thing I could control with all the things I couldn’t.”

    Pete reduced his intake to two or three bites of food per day. By the time he left the hospital 30 days later, he had lost 40 pounds. That single decision became the foundation of everything that followed.

    For anyone newly out of the hospital and feeling overwhelmed, this is perhaps the most important message: you don’t have to fix everything at once. Find one controllable. Start there.

    Books like Grain Brain by Dr David Perlmutter and Why We Get Sick by Benjamin Bikman are excellent starting points for understanding the role of nutrition in brain recovery; both are recommended in this episode.

     

    Movement: From Water to CrossFit

    Pete’s physical recovery moved in deliberate stages. With right-side proprioception severely affected, his body couldn’t properly sense where it was in space land-based exercise felt impossible at first. The solution was water.

    “The water surrounds you,” Pete explains. “It’s easier to move with what we both have.”

    He spent nearly a year in the pool doing aquatic therapy, then transitioned to a gym with a personal trainer for four months, then, in April 2024, ditched his cane and started CrossFit. He now attends every day, with about 30% modification.

    The journey from wheelchair to CrossFit wasn’t fast, and it wasn’t linear. But it was intentional.

     

    The Brain Science Behind Doing Hard Things

    One of the most fascinating parts of Pete’s recovery is how he used neuroscience to drive his progress. After watching a Huberman Lab episode featuring David Goggins, he learned about the anterior mid-cingulate cortex (AMCC), a region of the brain that grows and strengthens specifically when you do things that are difficult and unpleasant.

    “Everything I did not enjoy or created pain, I’m doing it.”

    This wasn’t masochism. It was a strategy. Pete began deliberately choosing the exercises, behaviours, and tasks he least wanted to do and watched his recovery accelerate as a result. His speech improved. His movement improved. His cognitive function came back faster.

    Bill adds important context here: when you visualise movement, your brain fires the same neural pathways as when you physically perform it. Pete used this daily, studying his CrossFit workout the night before, visualising each exercise, then arriving 30 minutes early to breathe and mentally rehearse before training.

    This is neuroplasticity working for you, not against you. The choice is yours: choose the hard that rewards you, or endure the hard that doesn’t.

     

    Identity: Three Words That Changed Everything

    Beyond the physical, Pete’s recovery demanded a complete rebuild of who he was. An executive career was gone. Independence had been stripped away. The personality and habits that contributed to the stroke, such as overworking, overeating, and using alcohol to manage stress, needed to be replaced, not just removed.

    He approached this the way he’d approached business: with a framework.

    At any given time, Pete identifies three words that define who he is. Right now: resilient, consistent, and unafraid.

    “I try to be honest with myself and say, where am I now?” he explains. “And it may change, but it gives me something to triangulate toward.”

    This kind of identity-based self-management, knowing who you are deciding to be, not just what you are trying to do, is one of the most transferable lessons from Pete’s story.

    What Life 3 Years After Stroke Really Looks Like

    Pete’s neurologist, who once saw him quarterly, recently told him she doesn’t need to see him annually anymore. “We have not seen this kind of recovery before from what you had,” she said.

    He’s about to start a fractional leadership business with a former CFO. He does CrossFit every day. He sleeps well. He volunteers. He uses AI tools to stay sharp and curious. He is, as he puts it, “on the other side of it.”

    But he’s also clear-eyed about what’s ahead: returning to high-stakes work, managing the stressors that contributed to his stroke in the first place, and monitoring the potholes that come with re-entering a demanding professional world.

    “I realise that is a very real risk,” he says. “I’m going to test and learn.”

     

    The Lily Pad Principle

    When asked how to frame the journey for people still in the early stages, Pete offers one of the most useful images in this entire conversation:

    “It’s like lily pads across the lake. Get to a lily pad, then get to the next one. Don’t worry about boiling the ocean. Don’t worry about what it’s going to be in months or a year. Step by step. Keep pushing.”

    That is life 3 years after stroke, not a finish line, but a direction. And for Pete Rumple, the direction is forward.

     

    Want more stories like this? Read Bill’s book recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke

     

    Disclaimer

    This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

    From Wheelchair to CrossFit: Life 3 Years After a Massive Hemorrhagic Stroke

    Pete Rumple lost 150 lbs, ditched the wheelchair, and now does CrossFit at 61. Here’s what life 3 years after a stroke really looks like.

    Turnto.ai Interview
    Peter Rumple Interview EP 332
    Turnto.ai discount code: Bill10

    Highlights:

    00:00 Introduction to Life 3 Years After Stroke Recovery Journey
    05:31 Physical Recovery and Rehabilitation
    11:05 Dietary Changes and Weight Loss
    15:42 Medication Management and Health Improvements
    21:29 The Role of Visualisation in Recovery
    26:03 Embracing Discomfort for Growth
    33:31 The Power of Hard Work and Persistence
    40:53 The Journey Back to Work
    50:48 Navigating Health Challenges
    56:25 Resilience and Consistency in Recovery
    01:04:38 Proactive Health Management
    01:15:11 Defining Identity Through Resilience

    Transcript:

    Introduction to Life 3 Years After Stroke Recovery Journey

    Pete Rumple (00:00)
    And Bill, I want to take a second and plug your book back in the first ⁓ the first session I did with you, I referenced a number of things you taught me through the podcast that I did to make to start building momentum like the cooking dinner every day was the to do. That was your mission. Yeah.

    so much of what I’ve learned from you, the podcast and what’s inevitably in the book was a great starting point for me. And I built my, my stuff on top of it, but it was really great to stand on your shoulders and get, and get that lift.

    Bill Gasiamis (00:44)
    Hi everyone, before we get into Pete’s story and you are definitely going to want to hear this one. I want to share something I’ve been using myself that I genuinely think could help a lot of you. It’s called turn2.ai and it’s an AI health sidekick that keeps you up to date with personalized updates every single week. Did you know there were over 800 new things published every week related to stroke? Research, expert discussions.

    patient stories, clinical trials, events. It’s an enormous amount of information. Turn2 finds what’s most relevant to you and delivers it straight to your inbox. I use it myself and it’s genuinely my favorite tool for 2026 for staying across what’s new in stroke recovery.

    It’s low cost and completely patient first. You can try it for free. And when you’re ready to subscribe, you can use my code, BILL10, at turn2.ai slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also, if you haven’t yet, pick up a copy of my book, head to recoveryafterstroke.com/book. Real stories, real tools.

    The same stuff Pete and I talk about today and a huge thank you to everyone supporting us on Patreon and in the other ways that you support the show and myself. You’re the reason this content stays free for the people who need it You can support the show at patreon.com/recoveryafterstroke. Right. Let’s get into Pete Rumple’s story. Massive hemorrhagic stroke.

    Wheelchair couldn’t walk or talk 337 pounds three years later. He does CrossFit every day So you’re gonna want to hear this one. Let’s get into it

    Bill Gasiamis (02:35)
    Pete Rumpel, hello, welcome back.

    Pete Rumple (02:38)
    Hey Bill, it’s great to see you again.

    Bill Gasiamis (02:41)
    Great to see you too, my friend. ⁓ Last time we met was about a year ago. And this is gonna be a slightly different episode because we’re gonna talk about what things were like then and then what they’re like now, just so that we can paint a picture for people about how recovery has gone, what happened in the last 12 or so months. And in the previous episode, by the way, that was episode…

    338 or something. And now we’re nearing episode 394, 395. will be. So I’ve been pretty consistent. So it means that it’s been over a year because I try and release one episode a week, et cetera. So it’d be a really good thing to do for people is to give them a bit of a guide of.

    some of the setbacks, some of the challenges, some of the things that have changed, improved. And now everyone’s different, okay? So this is Pete’s version. And what we’re hoping to do is kind of inspire hope, Pete, right? We wanna give people hope that things can change and improve. And even if it’s slower for you than other people, there can be a reward for putting in a lot of effort, hard work, re-educating yourself about what it means to live healthily.

    and all that kind of thing.

    And give us just a little bit of an insight because there’ll be a link to the original video where you can find out Pete’s complete story, but give us a little bit of an insight into the stroke, the day that it happened, what it was like.

    Pete Rumple (04:24)
    Okay, you bet Bill it was about 38 months ago. The stroke, was, it was a massive hemorrhagic stroke.

    ⁓ eight months in a wheelchair had to learn to talk again, walk again, all that. And, ⁓ so we had, ⁓ had the call about a little over a year and a half through it. And then, ⁓ now I’m further through it and, it’s gone amazing. I’m so lucky. So whatever we want to dig into that’ll be great.

    Bill Gasiamis (05:04)
    So your deficits were your right arm wasn’t working properly. Initially you weren’t able to walk. You were wheelchair bound for nearly six months. ⁓ So what are the physical deficits like now? What has changed? What has improved? And how did that go? what were the things that you did that helped you improve in that way?

    Physical Recovery and Rehabilitation

    Pete Rumple (05:31)
    Yeah. So Bill, I, um, it was my right side that I lost, which I forget what the term is, but, uh, it was my whole right side. So, um, when I, what, what I did that was important is first of all, totally overhauled my diet. And I, um, I had lost about 150 pounds.

    Um, I then, when I started about a year into it, I started, um, doing aquatics, the water aerobics to start dealing with their proprioception and the, um, and just movement. couldn’t, I couldn’t do that in, the ether. I couldn’t do it in the air. had to do it with the water.

    Bill Gasiamis (06:27)
    Okay, why is that? Because that’s interesting, because I have a similar problem with proprioception. My left side kind of doesn’t know where it is. There’s not enough information telling it where it is. And sometimes it overcompensates and I get off balance, etc. It feels strange. In the water, I also calmly, I felt calmly different, like I felt ⁓ more supported, even though the water wasn’t really supporting me. How was it for you?

    Pete Rumple (06:56)
    You’re absolutely right, Bill, because the water surrounds you, right? So it’s easy to move in the water with what we both have. So I spent almost a year in the water. then I started to, then what I did is I moved to a gym with someone helping me work out for about four months.

    And then in April, so almost a year ago, in April, I got rid of my cane and I went to CrossFit. And so now I do CrossFit every day. And that was really ugly at first, Bill, and I had to do a lot of modification. But now I modify probably 30%. But

    Bill Gasiamis (07:42)
    Uh-huh.

    Pete Rumple (07:54)
    row bike. can’t run yet. I’m still walking, but I’m getting ready to go to the beach and practice running for about a month.

    Bill Gasiamis (08:05)
    Okay, where in the head was the hemorrhagic stroke? Where did it happen? Do you know?

    Pete Rumple (08:14)
    The where, ⁓ I forget.

    Bill Gasiamis (08:18)
    That’s all right. It’s not important to remember. So also then, ⁓ when you had the hemorrhagic stroke, how was it rectified or resolved? Did they operate? What did they do?

    Pete Rumple (08:30)
    They didn’t have to operate.

    Bill Gasiamis (08:32)
    Uh-huh.

    Pete Rumple (08:33)
    They just, I got in there, they did things to make sure the bleeding stopped, ⁓ but it was no operation.

    Bill Gasiamis (08:45)
    what caused the bleed? Was it ⁓ high blood pressure as a result of your weight?

    Pete Rumple (08:50)
    It was a number of things, was high blood pressure, it was a lot of stress. They have a scale bill called the Holmes Raw Scale, Holmes with an L and Raw, R-A-H-E, where you can, it has like 42 major stress events. If you score under 150, you’re fine, 150, 300s.

    pretty bad and then over 300 is devastating like it’s predicts a major stroke or heart attack within a year. And I was 360 on that scale. I’d gone through the divorce, I had the kids, I had a job change, you name it, I had it. ⁓ Weight was not good, drank too much. So that was my wake up call.

    if you will, which was severe. And it’s been, it’s great now.

    Bill Gasiamis (09:53)
    Yeah, so your arm was completely flaccid, I think, when we spoke last. So where is it now?

    Pete Rumple (10:03)
    I can do everything with it. This is the, so I can lift and I’m lifting more weight, not where I was, but about probably 50%. I’m doing pull-ups with the arm and my legs are, I’ve worked them a lot. I’m very strong there. So it’s getting there.

    Bill Gasiamis (10:25)
    Okay, cool. When we spoke, you mentioned that in hospital alone, you’d lost 40 pounds. That kind of makes sense. A lot of people say that things change in hospital food relation. When you’re unwell, ⁓ how you consume food completely changes, as well as how hospitals ⁓ treat people with regards to the food, how it’s terrible, how often you get to eat.

    and how accessible it is. So, but earlier, a little earlier, you said that you lost 150 pounds all up.

    Dietary Changes and Weight Loss

    Pete Rumple (11:05)
    Yeah, Bill. So when I was in the hospital, which was obvious, I was there 30 days from the stroke. And that was where I had to make a choice. And it was like, if am I going to try and get better or not. And so what I did is I ate two to three bites of food a day. That was it because I was in a wheelchair, Bill, I couldn’t move.

    So coming out 40 pounds lighter was ⁓ a lot of work and a lot of fasting, if you will.

    Bill Gasiamis (11:42)
    Why did you decide that that was what you needed to do? How did you conclude that? I know I’m gonna be in hospital. I’ve had a hemorrhagic stroke. There’s nothing else I can do. What I’m gonna do is fast and stop eating food. How does that?

    Pete Rumple (12:01)
    was a first step, Bill. Absolutely. was like, I got to change everything. And so as I lay here, this is one thing I can control with all the things I can’t.

    Bill Gasiamis (12:14)
    In hospital though, most people in hospital don’t have that realization. I mean, that would have been days out from a hemorrhagic stroke. They’re telling you all these things. Like how did you get to that conclusion? Were you cognizant of needing to do that earlier before you got sick and then you thought, well, now I have to do it or was it an aha moment of some other kind?

    Pete Rumple (12:40)
    No, you’re absolutely right. And it was something I knew was getting out of control, Bill. And I couldn’t, I couldn’t resolve it. It was just, it was really tough. And I’m like, this is it. I mean, this is the ultimate wake up call. The other one, Bill, was I had, when I came into the hospital, I was on 17 meds. I now have two.

    and I’m at 20 milligrams and I’m probably off those in the next four to five months. So it’s been a long programmatic diet, nutrition, health, and it’s been three years. I mean, it’s not insignificant for sure.

    Bill Gasiamis (13:27)
    ⁓ What was the 17 medications treating or or or managing?

    Pete Rumple (13:37)
    I think Bill, it’s almost like, like, what do you do with this guy? You got to throw everything at him to keep on going. I don’t think it would have been 17 for very long. It was probably stop gap measures. Some were pain, but even the pain bill second day. I said, I want no more pain meds, take them away. And it was brutal, right? Cause you know, the way you feel and the, my scapula, my legs, was, it was

    awful, but I was like, I found my way here, I got to find my way out and let me get off as much as I can and start the pilgrimage back.

    Bill Gasiamis (14:20)
    Before the stroke, would you have been somebody who would have taken a device to change your diet?

    Pete Rumple (14:28)
    I would have taken every hack I could have, Bill, before the stroke.

    Bill Gasiamis (14:34)
    Anything to avoid doing the hard work? that what you mean? Yes.

    Pete Rumple (14:38)
    Yes, sir. And look, I was always a hard worker. And I would work out and do stuff. But this is a whole other level. This became life or death. I mean, because you know, the stats bill, like, when I looked at the stats that about 75 % of people are gone in year one, there’s 25%, especially hemorrhagic, 25 % at the time.

    25 % a month later, 25 % at the end of the year, another 20 at the end of year two. I’m like, I’m gonna go through all this and then I still have so little chance. So I just went for it and I went really hardcore.

    Bill Gasiamis (15:25)
    Did you eat, drink too much to manage emotional ⁓ stress, challenges? What do you think was behind it? Or was it just bad habits? Or did you think you were bulletproof? What was the reason behind it?

    Medication Management and Health Improvements

    Pete Rumple (15:42)
    Everything you just said, Bill, everything you just said. Yeah. I mean, it’s everything, right? You start justifying bad behavior. You have a reason for why things happen. And I just like, even when I try to lose weight, though, I might lose a couple pounds, but then I eat again and what I was eating, how I was eating. So in that first year, I went super deep on nutrition.

    and how your body works. And I went from, at the stroke I was 337 pounds. And then when I did my podcast with you, I was 180.

    Bill Gasiamis (16:25)
    Yeah, well, ⁓ one of the books that I’ll mention to people, you might have read different ones, and that’s cool. But the one that always comes to mind that I always recommend is Grain Brain by Dr. David Pelmutter. So if you’re in the very early stages of recovery and you want to make some changes like Pete did, read or listen to the book Grain Brain by Dr. David Pelmutter, and then ⁓ read a book called ⁓ Why We Get Sick.

    ⁓ I’m going to quickly do a search on ⁓ online because I keep forgetting the person’s name. ⁓

    And what it’s going to do is going to why we get sick by Benjamin Bickman. And what it’s going to do is going to give people an insight into the. ⁓ I one of the things is the first book is the food that you can avoid and stop eating and the reasons why and how they benefit the brain and then ⁓ why we get sick is an insight into, in fact, exactly that why we get sick.

    so that you have an understanding of what might have got you into that real bad state. And then also before that, ⁓ the food component of it, because those two things, if you know why you got somewhere and then you know what the trigger was, what the thing was that made you get there, so the food, for example, then you’ve got a great foundation for taking the next step forward ⁓ and reversing it.

    Pete Rumple (18:02)
    Absolutely.

    Bill Gasiamis (18:04)
    and improving your health and improving your diet, losing weight and decreasing your risks of heart attack, stroke, cancer, all that kind of stuff. ⁓ So I love that you got curious. That’s what I did. I was in hospital reading and watching YouTube videos about how I’m going to recover, how I’m going to overcome things, all sorts of stuff like that. And it was…

    Pete Rumple (18:19)
    I remember.

    Bill Gasiamis (18:31)
    in a situation where control is given over to medics, doctors, surgeons, all that kind of stuff, you feel like you’re a little bit of a, you’re just floating in the wind and you’re not really stable and you don’t have an anchor point, right? So when you, if you want to feel like you’re a little more anchored, what you could do is you could take control of the controllables and

    Nutrition is one of those controllables and it doesn’t cost you any extra. You don’t have to spend money.

    Pete Rumple (19:04)
    You’re absolutely right, Bill. It’s a huge point. By the way, there’s a great app, and I know there are many, but there’s a great app called Yuka, Y-U-K-A. You can scan any barcode in the store and it will tell you the score and what’s wrong with it and the amount of food I was eating that was, especially in the U.S., Bill, heavily processed, additives, dyes. It’s like toxic.

    And so you can scan it and know what’s really in it. And it tells you what’s good, what’s bad. And it was a huge help.

    Bill Gasiamis (19:44)
    Yeah. So we’re going to have some of these links in the show notes for anyone who wants to find them. I’ll put a link to the books. I’ll put a link to Pete’s previous episode. We’ll put a link to that Yuka app. Pete, that’s your homework. You have to send me that link when we’re chatting. ⁓ When you say you’ve lost 150 pounds, like that is 50 kilograms. That is almost

    two-thirds of my weight. Well, it’s actually, yeah, it’s about two-thirds of my weight. That means that if I lost 50 pounds, I would just be a bag of bones.

    Pete Rumple (20:30)
    Well, and Bill, I was a bigger guy to begin with. have a big frame and I played a lot of US football, American football. So I had a lot of weight to lose, Bill, and it’s gone now. And I’m back up to about 205 and it’s all muscle life, about a 32 inch waist now.

    really, really fit and I go for it. And by the way, by the way, I want to make one point to all listeners that took a long time, Bill, like between being the wheelchair for eight months and then getting the pool. It took a long time. I used to go and sit and watch people work out to just reacquaint myself.

    Bill Gasiamis (21:03)
    How old are you?

    The Role of Visualisation in Recovery

    Pete Rumple (21:29)
    what it looked like and inspire myself. It has been a long road, but my goodness, is absolutely I’m on the other side of it now. Cause as I had said in the first podcast, the first 18 months, I did not want to live, especially year one, ⁓ immense amount of pain. had been a successful executive that was gone. Like it was really

    really rough. And so now it’s beautiful. And I want people to know that because it it’s so worth it. Delay gratification, you learn a lot about it. And it’s ⁓ Yeah.

    Bill Gasiamis (22:14)
    I love that delayed gratification, but also you went into a gym watching other people train when you couldn’t train, just so you can be around it and familiarize yourself with it again. That’s really interesting. That’s probably one thing I’ve never done is go to a gymnasium and watch other people train. It’s a bit creepy Pete.

    Pete Rumple (22:32)
    Yeah, it is. It’s weird. And people would look at me like, what’s he doing? And by and by the way, Bill, I did a lot of work on how to breathe, which was really helpful, how to how to manifest and to really sit and get mentally so I go even today, Bill, I go in a half hour before my workout to work on breathing and visualizing my exercises, because I get the

    the list of what my workout is before I get there the night before. So I study and I prepare and then go.

    Bill Gasiamis (23:10)
    What I love about visualizing is that if you visualize the brain actually fires off the exact same neuron and pathways that it does if you actually physically do that thing. And there’s been studies in the past that have showed that you can take an average guy like me and you can make them watch a video of somebody doing archery, for example, and you can ⁓ take them through a number of

    repetitions of this person, this champion doing archery. And just with that information and the visualization techniques later, you can take somebody who has basically never shot ⁓ an arrow through a bow and you can get them to a certain level of competence far more rapidly than you would have if you just got that person out of a crowd and sent to him.

    Have you ever shot an arrow? If they said no and they took the shot, they probably wouldn’t be able to do it as well as the person who was trained by just watching what the other person, the champion was doing. And when I was in hospital wanting to walk again, I’m sitting in my bed between sessions because I had a wheelchair as well. And I was visualizing myself doing the perfect walk, what the perfect walk would look like.

    And then I would take myself later to ⁓ therapy where I would be walking and I would be trying to replicate what I was seeing in my head so that we could get a similar result. And of course at the beginning, your leg is now doing it physically and it needs to catch up to the brain. The brain has ⁓ the pathway, but the leg needs to catch up.

    So then what the leg does is it goes, this feels a bit weird or this is a bit strange or this is not how I expected it. But it has a reference point for where to get to and how to do the perfect step, right? And then you’re closer to the perfect step than you were if you were just relying on therapists to ⁓ train you through that.

    Pete Rumple (25:22)
    You’re absolutely right, Bill. And the brain is amazing. Look, it can work for you or against you depending on what you’re thinking and how you’re doing things. And it was really amazing, Bill, because as I built my capability through CrossFit, it was amazing how my brain would start to take over. Like I wasn’t sure, but my brain was already, I got it, and so grew.

    It started carrying me and just getting it done. It’s amazing.

    Bill Gasiamis (25:58)
    Yeah, yeah.

    Embracing Discomfort for Growth

    But how did you know to do that? That’s the thing that I’m interested in understanding because I didn’t know the guy before stroke didn’t know about doing like magic like this. know, how do you, I don’t know, like, can you explain how you found yourself in that situation? Cause I can’t, people go to me like, well, how did you know to do that? Or how did you do that? And I’m like, I don’t know what happened, but something clicked.

    that made me stumble onto, discover, find all the necessary tools that I needed to get me to the next stage. I’ve never been able to do that before and I can do that now.

    Pete Rumple (26:46)
    Yep, me too, Bill, me too. And you know what? I think it’s how desperate we are for answers. And especially you can read all these blogs about what doesn’t work and what’s a waste of time, but you find the nuggets and you go for it. Here’s a great one, Bill. And I’ll send this in the link. Andrew Huberman, he runs a podcast called Huberman Lab.

    He had David Goggins on and he purposely waited for Goggins to share with him the research around the AMCC, which is the anterior mid-cruciate cortex, which is a part of the brain. And when you do things that are hard and you don’t enjoy it, that part of your brain grows and gets stronger.

    So I sat there, Bill, and I’m like, well, damn, if I can start to make my brain stronger, I’m going to do it. So I did all the stuff I hate to do. And I started doing it. And I started even faster, talking better, walking better, and really doing everything I did not like to do. And he even brings up the point when he describes it. He brings up that if you like running every day,

    It doesn’t work. But if you hate running and you have to go run, it works and it makes sure and make, they’ve learned so much that was, that was about three to four years ago. They found it, but this is a massive find in the brain. And I started using it, Bill. And what I started to do was everything I did not enjoy or created pain. I’m like, I’m doing it.

    And it took me from averting it to leaning into it. And it was amazing. it’s, you’d think it’s BS, it’s not. And Huberman, you know, he works at Stanford. He knows his stuff. It was really, really impactful.

    Bill Gasiamis (29:03)
    Yeah, it’s about being comfortable being uncomfortable, isn’t it? Like it’s realizing that you’re probably not killing yourself by paying in a little bit of pain exercising. also, yeah.

    Pete Rumple (29:16)
    And

    Bill, I will just say, I did a very good job for the first time in my life of listening to my body. So I go hard, I push, but when I wasn’t feeling it or didn’t feel right, I take the day, relax, and then come back stronger next.

    Bill Gasiamis (29:38)
    I want to pause there for a second because what Pete just described is exactly the kind of thing I wrote about in my book. The idea that the obstacle is the path, the doing the hard stuff in recovery. If you haven’t grabbed the copy yet, it’s called the unexpected way that a stroke became the best thing that happened. You can find it at recoveryafterstroke.com/book. The link is in the show notes and in the YouTube description. So let’s get packed.

    to Pete.

    Bill Gasiamis (30:08)
    Yeah, yeah, agreed. And it’s important to listen to your body after a stroke, because you don’t want to make things worse, especially when you’re still healing and still recovering and you’re still fragile, you know, there’s a lot of things that you need to take into consideration. However, being uncomfortable and being comfortable with that is really a good skill to master. ⁓ It is, ⁓ it reminds me of the saying that we hear that’s often attributed to

    the old great Roman Emperor Marcus Aurelius, which is the obstacle is the way, you know, when you get to something that’s really hard, you go for it, because that’s what you’re to be. That’s the purpose of the obstacle. It’s to overcome it, to find the way around it, under it, over it, through it, whatever it is. And Goggins is a scary guy. He’s a scary guy, because he runs without, without cartilage in his knees or something. I don’t know what he’s missing.

    but he shouldn’t be able to run, he shouldn’t be running and somehow he still runs. I think his version of running is a little toxic. I think he’s just a slight too far, ⁓ but nonetheless, it’s still proof of ⁓ what you’re capable of and how much people can push and go beyond their comfort zone. And if you’ve never pushed beyond your comfort zone, there’s no better time to do it. You really have to do it now because you want to activate the right neuroplasticity.

    You don’t want to activate negative neuroplasticity, which rewires your brain to be more comfortable, less willing to do hard things. ⁓ And therefore, you get the results of that. You get the decrease in your recovery or the ⁓ overcoming of your deficits. So I appreciate that whole ⁓ mentality of finding what’s hard and

    you’re probably in the right place. That’s probably what you need to do.

    Pete Rumple (32:07)
    Absolutely right, Bill. And I agree with everything you said. And look, I love Goggins, but it’s not to be like a warrior like him. The point is, like with Huberman, it was cool because Goggins thinks that way so much. He wanted to launch the foundational research with Goggins there with him. He purposely waited. So it was pretty cool.

    Bill Gasiamis (32:35)
    Yeah. And that that’s the thing, right? It’s like you get rewarded for doing hard things. ⁓ Stroke is hard. And if you ⁓ take the easy route, the comfortable route, the hard part of your stroke remains hard. Like it doesn’t get better. If you choose the other hard, the recovery

    Pete Rumple (32:59)
    right.

    Bill Gasiamis (33:04)
    benefits that you get from choosing hard of exercise, the hard of changing your diet, the hard of changing your mindset, et cetera. Like then that version of hard gets you a reward that is beneficial. The other hard just gets you more suffering. And that’s the hard you wanna avoid. Suffering without purpose. Well, suffering for a purpose gets you a payoff.

    The Power of Hard Work and Persistence

    Pete Rumple (33:31)
    That’s right. That’s exactly right, Bill. And look, with the, when you put it all together between the diet, though, increasingly working out, going after the deficits, all that, day by day, painful, hard, depressing, but you start looking three months, six months, a year later, you’re like, you start building your will and your ability.

    to do things you did not think you could do, and then it starts feeding on itself, and it becomes so powerful.

    Bill Gasiamis (34:09)
    Yeah, that’s my experience too. ⁓ Somebody put it in my head that I should start a podcast 10 years ago. It’s been 14 years since my first stroke this month, February, 14 years. It’s just gone like that. And then about three years in, a friend of mine said, should start a podcast type of thing. So I did. And it has been more than 10 years that I’ve been doing this podcast. ⁓

    And I never thought that I’d be doing a podcast, let alone for 10 years. We’re talking about at the beginning, not a lot of episodes because I was too unwell to put a lot of episodes out. it’s ramped up now in the last four or five years, doing an episode a week, most weeks. And then the other thing I never ended up, I never thought I’d end up doing is writing a book here. Here’s the plug for the book.

    Pete Rumple (35:01)
    love it. I love it.

    Bill Gasiamis (35:03)
    The title is mental, like it’s the unexpected way that a stroke became the best thing that happened. ⁓ But the book is exactly the things that you’ve said. And I thought initially when I discovered those things about my book that I needed to put in my book, I thought that I was rediscovering these for the first time. Like at the very beginning, diets, ⁓ mindset, ⁓ exercise, sleep. ⁓

    ⁓ meditation, hanging around other people who are positive, all that kind of stuff, doing stuff for other people, ⁓ like volunteering, that kind of thing. I thought I was discovering these things ⁓ for the first time ever, but turns out these are things that humans have always done. That’s what they default to. They default to all of these things when it’s necessary, and that’s where they get lost from. They kind of move away from there because they get diverted from there, from say,

    marketing or advertising or what somebody else is doing or through a lack of ⁓ focus from being distracted from work, from relationship issues, whatever the situation is. I didn’t write anything different in my book than has been written in the hundreds and thousands of books on this topic that have come before it. I just reorganized that and set it in my own words. But the reality is, is this is what

    people do when they’re trying to recover. They default back to the bare basics and they’re things that you can implement without ⁓ spending any extra money buying a course or anything like that. Of course, you might need to read it in a book for the first time to remind you or you might need to hear it on a YouTube video, but the reality is, is that nothing new in this book.

    Pete Rumple (36:51)
    And Bill, I want to take a second and plug your book because I have not read it yet. But back in the first ⁓ the first session I did with you, I referenced a number of things you taught me through the podcast that I did to make to start building momentum like the cooking dinner every day was the to do. That was your mission. Yeah.

    so much of what I’ve learned from you, the podcast and what’s inevitably in the book was a great starting point for me. And I built my, my stuff on top of it, but it was really great to stand on your shoulders and get, and get that lift.

    Bill Gasiamis (37:38)
    Yeah, isn’t it weird? Like it was just one thing, but it was the most important one thing. My whole world revolved around that. If I could put dinner on the table for the family in any capacity, it didn’t have to be like a five star meal or three courses or anything like that. It just had to be dinner. If I could do that, then that was kind of how I rehabilitated myself. I needed to be healthy enough, good enough, fit enough, have enough energy to just put a meal on the table for everyone when they came home from.

    work. was such a it’s such a it was it was important for many reasons. But it was also what I didn’t realize the underlying benefits that it was creating, which were the ones that ⁓ I noticed later after

    Pete Rumple (38:25)
    Yep. And you were re-engaging and you were pushing yourself. And I remember you go to the store to buy the stuff you needed sometimes. like all that stuff, Bill, when I look at the beginning, I couldn’t watch a TV for over a year. I couldn’t listen and did not listen to music for two years. It was, and now I’m like back in the fold, but it’s the

    push, the push, the push and just, you know, listening to the body, but going for it all the time.

    Bill Gasiamis (39:03)
    Yeah, exposure, like exposure, exposure, exposure, small, then larger, then more and more. I remember going to the stores to the local mall here, and we call it a shopping center, and parking the car, and then not being able to remember where I parked the car, walking around the entire car park, and talking to my brother, and going to him, he rang me just out of

    blue and I said to him, he goes, what are you doing? I said, I’m walking around the car park. He what are you doing that for? That’s because I don’t know where my car is. I’ve been looking for it for half an hour and I’ve got no idea where it is. I parked it and I just got no idea where. I don’t know which car park. I don’t know where I came in from. I don’t know what level it was on. And I was just walking around the car park talking to my brother, just telling him, I came and got a few things, but now I can’t get back to my car.

    Pete Rumple (39:55)
    Yeah, and there’s definitely you know bill once I got out of the darkness There’s definitely some really funny stories That that happened especially like the way The way I would walk people would see me I might be in a restaurant and i’m going to the bathroom and they think i’m drunk Yeah, and they’re like making fun of him like hey i’m not drunk, but ⁓ I get

    you know, I’m all right, I got it. And they’d be like horrified and I’d just start laughing. It was funny, but you gotta have some fun with it too, you know?

    Bill Gasiamis (40:34)
    Absolutely, you have to, you gotta laugh. you don’t laugh, well, it’s gonna be difficult time. You, ⁓ I remember when we spoke last time, you mentioned about trying to get back to work. ⁓ How did that go? Was it successful? Did you have some challenges? What was going back to work like?

    The Journey Back to Work Life 3 Years After Stroke

    Pete Rumple (40:53)
    So Bill, I’m gonna start back in June. I’ve done some projects, work projects, but I have not officially started working, but I’m going to. I’m starting a business with a close friend of mine, my former CFO, and we’re gonna start a new business.

    Bill Gasiamis (41:18)
    Tell me about the new business. What is it about? Can you share anything about it?

    Pete Rumple (41:22)
    Yeah, it’s called fractional leadership bill will probably go to companies that are ⁓ getting funded, trying to grow. They got a good idea. They can’t afford the people they need. So you basically it’s less consulting. It’s more you’re operating it for them and you work with multiple customers and it’s called fractional leadership is becoming a

    really pretty popular model. And, ⁓ and also for companies that have that have their revenue is stalled or shrinking, get them turned around. That was my background. My background was ⁓ running chief revenue officer. So everything that drives revenue in a company and I was a CEO twice.

    Bill Gasiamis (42:06)
    Uh-huh. Soon.

    Did you have a specific industry that you worked in?

    Pete Rumple (42:23)
    Yet a lot of times I call it TMT for telecom media and tech so tech companies and media and That kind of stuff Rosetta Stone was his language learning company. I was I ran all our institutional business education government and and ⁓ Corporate

    Bill Gasiamis (42:49)
    Wow, what a challenge. mean, technology is changing so rapidly. ⁓ I

    Pete Rumple (42:55)
    love

    it, Bill. And look, I’m sorry, I just had to make this point and not forget it. That was another thing I’ve done, Bill is I’ve gone heavy into AI. And I did it, not just because it’s the buzzword. But I’m like, Hey, if I’m going through this process, if I’m retraining my brain, why not try to get good at stuff that I either didn’t do or need to know. And it’s been so rewarding, Bill.

    Bill Gasiamis (43:24)
    out.

    Pete Rumple (43:25)
    It’s just crazy. Like AI, use chat chat, GBT, and it’s like my, my best friend. now work with chat daily and it’s amazing how the tech technology works. Not only can it be really helpful for figuring things out and having a partner, but it also remembers things about you in how it builds the profile.

    So it’ll basically say, Pete, don’t forget this, this, and this. And it’s awesome. It’s really killer.

    Bill Gasiamis (44:02)
    So here comes another plug, Pete. Okay, so this is not a sponsor, but it’s something that I truly believe in, okay? Because the person who contacted me, A, is an Australian, B, is a mother, ⁓ C, is a mother of two children with cerebral palsy. And she was looking for solutions to all the challenges that they faced as a family, especially to help her children, right?

    parent would do. So then ⁓ she used to do research like you and me jump on the computer, do some research, find out about all the things that ⁓ she needed to know with regards to what was most current in cerebral palsy right now. And she’s the struggle because ⁓ imagine like the time that it takes when you have a stroke brain to research, read, comprehend, determine whether

    Pete Rumple (45:01)
    We know. Yeah. Yeah. Yeah.

    Bill Gasiamis (45:04)
    whether or not that is applicable. Okay, that’s not applicable. Put that to the side, do another search. And then also going to doctors and researchers and all these other people and saying to them, what about this? What about that? And then them not being aware of anything that was new because they’re too swamped. They’ve got a massive workload. They don’t have time to be up to date with all the research, right? And this is a hundred percent a full on plug.

    I’m not apologizing for that. However, what this lady did, Jess from turn2.ai, I have a link to her interview as well, because I interviewed her, is she created an ⁓ AI that goes and does the research, the searching for you, and then sends you an email every week with everything new in your particular topic, for example, stroke. And then it tells you, I found

    seven, nine, 10 things for you this week that are new on stroke. It could be a podcast. It could be a research document. could be ⁓ whatever it is. It could be a book. It could be anything. It just finds it and sends you that information. And as your recovery continues, right, ⁓ what happens is ⁓ you might say, okay, now is there any information about food related to stroke recovery and healing the brain?

    And then it adds that to the search list. And then it comes back at the end of the next week with all the new information from food and brain. And then also whatever it was that you previously prompted it to find you. And it just keeps finding information and you build it and you build it and you build it. And then next week you get interested in meditation and you type, what can you tell me about meditation and healing the brain? And then it’s going to bring you all that information to your inbox. I spent

    hours and hours and days and days trying to find information about what I needed to know about stroke recovery. And when I found that little piece of paper, I had to go through the rabbit hole. I had to go down the rabbit hole and try and find ⁓ where ⁓ where it kind of where the exit point was where it led to so that I can discover whether I need to implement this, do this. So this just saves

    so much time and the guys are selling it for two bucks a week. Like you can get a month free and two, and then after that it’s two bucks a week just to find and do all the searching for you and bring you specific and relevant stuff. And we’re talking about scientifically relevant and specific like PubMed articles, like scientifically proven stuff, not what Bill ⁓ concocted up in his bedroom.

    you know, in suburban Melbourne, like proper things. So I love that you said that you’ve turned to AI. I’ve been using chat as well. Chat helps me with so many things, but what’s important is to learn how to interact with it. And that’s another, that’s another thing, another skill to discover. And it’s important that we jump on the bandwagon. AI is not going away.

    You need to learn about it, how to interact with it, and how to use it to benefit you and decrease the amount of time it takes to do something and get to recovery.

    Pete Rumple (48:37)
    You’re absolutely, absolutely right, Bill. I mean, it is, and even if you just use it for basic stuff to begin with, and you start learning how to create the right prompts to get the kind of answers you’re looking for, it’s a great skill. And the biggest thing is not being afraid and leaning into it.

    Bill Gasiamis (49:00)
    Yeah, not bad. Well, there’s nothing to be afraid of. They can get them all for free. At the beginning, you can get a free subscription. It doesn’t cost anything. And it’s just as useful. Perfect for that early training kind of phase in your chat, in your chat, JBT kind of discovery. There’s also Claude, there’s also the Elon Musk one. There’s hundreds of them now. Yeah, there’s heaps of them now, right? So I really encourage people to do that because

    If you ask it one question like, you know, what is one of the most ⁓ best books that I can read for, we’ll call it nutrition for nutrition and stroke recovery. That’s just going to decrease the amount of time it takes to find those books and bring that to you. Jump on Amazon, find it, get it sent to your house. ⁓ So I think it’s a great time for people.

    and it’s never been a better time to recover from a stroke. I mean, it’s a shit ⁓ group to become a part of at the beginning and it’s difficult and it’s painful. But if somebody has a stroke today compared to a stroke 30 years ago.

    Pete Rumple (50:17)
    ⁓ my goodness.

    Bill Gasiamis (50:19)
    Like it’s a completely different experience. ⁓ I think we’re kind of lucky to be living in the time that we’re living. ⁓ Even though I know that people hear about AI and what it could potentially do in some other situations. ⁓ Let’s use it for good. Like let’s break the work.

    Pete Rumple (50:21)
    That’s all we’ll

    That’s

    right. That’s exactly right, Bill. It can be used for evil, but it can be used for good. So use it. That’s right.

    Navigating Health Challenges

    Bill Gasiamis (50:48)
    Yeah, just like any technology, right? Like you hear all these things, but any technology can be used for good or evil. So let’s just use it for good. Let’s just make the most of it. So before your stroke, you were going through a divorce or had you already been divorced?

    Pete Rumple (51:08)
    I was already divorced. Yeah, it had been it had been a couple of years earlier. I had a bad car accident a bunch of but you know the kids live with me. It was just a stress sandwich and I did not go out the right way.

    Bill Gasiamis (51:27)
    Yeah. You didn’t go out at the right way because what do you think was behind that? Like, it’s hard to make really good decisions in very stressful times anyway. You have to have an opportunity or the insight to pause, step out of that situation for a little bit, reflect and then try and make decisions. how did you get into that stage where you found yourself not being ⁓

    not going about things appropriately, for example, perhaps.

    Pete Rumple (52:02)
    For me, Bill, it was like I didn’t have a choice. I was now in a wheelchair. I was in pain and I had nothing I could do but think. And at first that was very negative. It was, I didn’t handle it well. I didn’t accept it. And once I went through that process and I got like, okay, I’m going to get holistic about this.

    And by the way, I don’t want to, I don’t want to just fix the physical and then I get done and everything else is a wreck. So went after all of it and just started carving up my day, spiritual, cognitive, physical, mental, every day, a block of each practicing writing, all that stuff. So I just started doing it and rebuilt my life.

    probably like I should have in the first place, but stuff happens. I had to, you sometimes, you know, we, you and I laughed about this before. Sometimes we’re a little thick. takes a little longer. So it took me a while, but I’m there now.

    Bill Gasiamis (53:18)
    Yeah. And reflecting on that version of yourself from the past, does that does that person ever come up again, every so often, because we’re talking about all these positive things, all these amazing changes. And I don’t want to paint a picture that it’s only ever fantastic you and I like what we go through after our initial stroke has been all just roses. Is there moments of

    that things rearing their ugly head and you reverting back, how do you catch yourself when you’re there?

    Pete Rumple (53:57)
    Yeah, I mean bill that’s why what’s really good about this is my first podcast with you because we went really deep in the in the darkness of that now bill is beautiful man. It is beautiful. I am almost I almost don’t talk to people about it because

    My life is so much better because I had a stroke. It’s crazy. It sounds nuts, but it’s so true. Everything’s sweeter. I just, it’s hard to describe. It’s a blessing.

    Bill Gasiamis (54:38)
    Yeah, that’s crazy. It is probably crazy.

    Pete Rumple (54:42)
    It is?

    Bill Gasiamis (54:45)
    I find myself, ⁓ I find myself obviously having bad days. My bad days are related to stress, ⁓ you know, work, if they’re related to ⁓ interactions with people that don’t go the way that I preferred. They’re related to ⁓ what the stroke still does to me after 14 years. ⁓ It still causes neurological imbalances. still causes

    tightness on my left side, know, that tightness causes dysfunction on my right side, you know, the body goes out of whack. And if I catch it, if I have a bad night’s sleep, things get thrown out and it’s hard to, ⁓ it’s hard to always navigate it and be effective at catching it and then doing something about it, you know, cause you’re human, you get distracted, et cetera.

    Pete Rumple (55:38)
    Well, and Bill, you’re bringing up great points because as I transition back to work, I’ll have some potential potholes that I don’t have right now. So I’m very, I’m very conscious of what I’m going to go back into. Now. I love, I love work. It’s my sport and I love it. But, ⁓ and today I have now.

    bad moments, not bad days. Maybe those occurred, but I’m going to try to stave that off. But that’s just how it is now. as of as of now, that’s that’s the update, if you will. Yeah.

    Resilience and Consistency in Recovery

    Bill Gasiamis (56:25)
    Yeah. Okay. I like that you said that about work, like there’s gonna be some potholes with if you’re doing the type of work that you’re doing. ⁓ That’s pretty high level and high stress and intense for ⁓ at some stages, it could be right, you’re talking at organizations that are going through a hard time that are looking to you to solve their problems, so to speak, or to support them solve their own problems. So ⁓

    You know, the ramping that up is gonna need a little bit of thought so that you don’t go too far into that type of work without realizing how far in you’ve gotten.

    Pete Rumple (57:10)
    Absolutely right, Bill. You’re absolutely right. And look, I’m going to try to be as bulletproof as I can. The good news is I’ve been doing this work my whole career. So it’s been 40 years. So I don’t think I have to micromanage or get to like, I think I can find the right balance if I can’t.

    I’ll go to a lesser job and do something else. But so I realize, especially because I can get pretty intense. So ⁓ I realized that is a risk, a very real risk. I’m not shying away from it. I’m not saying, don’t worry. yes, there is stuff to worry about, but I’m gonna, I’m gonna test and learn.

    Test and learn is what I always do. Test it and learn, can I do it, not do it, do I have to do different, do I have to do something else?

    Bill Gasiamis (58:14)
    Yeah, brilliant. How old are you now?

    Pete Rumple (58:17)
    61.

    Bill Gasiamis (58:18)
    Okay, so at 61, most people are thinking about retiring. What are you thinking starting a new business at 61?

    Pete Rumple (58:25)
    Well, mean, Bill, look, let’s be honest, I think the last three years off. So I have some ⁓ room left in the battery. But I mean, part of the reason for this type of job, Bill, is because if we do this, we run it. And we’ll decide how we take care of clients, how we work and all that.

    And if I have to take on less, take on less. If I can take on more, take on more. And I’m gonna, like everything else, I’m gonna figure it out one step at a time, Bill. And I, you know, I don’t have the answers, but I’m gonna find them.

    Bill Gasiamis (59:11)
    And retirement’s not really in the frame for you. Like it’s not something that you’re thinking about, like to ⁓ officially retire, know, step away from the day to day and just, you know, go and sail off into the sunset type of thing.

    Pete Rumple (59:24)
    Yeah, I think to your point, Bill, like if I can make this work, I’ll probably work through my 60s. If I can’t, then I’ll have to probably hang it up earlier or do something lighter. And if that’s the way to be healthy, so be it. I’ll do that.

    Bill Gasiamis (59:43)
    What else does work bring you though? Because it doesn’t just bring work income. Like it brings more than that. Like for you, I feel like it’s more than just I’m making a wage or bringing in some money or whatever. What else does it bring?

    Pete Rumple (1:00:02)
    Yeah, it’s it’s competitive, Bill. It’s it’s my sport. You know, so hitting the numbers in a month and a quarter and a year. That is the scoreboard for what I do. And if you if you do it well, you can do really well and be very happy and influence a lot of people’s lives in a positive way. And if you don’t, it can be really awful. So

    Fortunately, I’ve been on the right side of that for a long time and I want to get back to it and no ego stuff I just I want to I want to

    I want to have an impact and I want to enjoy my sport.

    Bill Gasiamis (1:00:48)
    Fair enough. Even in your unhealthiest and heaviest before the stroke, were you this energetic? Did you have this same amount of energy?

    Pete Rumple (1:01:00)
    I’ve always been energetic, Bill, but I couldn’t operate like I do now. Like my sleep is wonderful. I go hard at the gym. I do projects. I volunteer. Like I’ve been readying myself for coming back in. And look, if I can, great. If I can’t, I’ll adapt.

    Bill Gasiamis (1:01:27)
    Yeah. I know when I went back to work, uh, well, I had to, I had to pause my business. have a painting and maintenance. Yeah. I had to pause it. I had to go back into an office, very basic admin role, like low level, but it was so hard being at work, sitting in front of a computer for eight hours a day. We started, I started that job in 2016 and finished in 2019. By the time I got to 2019.

    Pete Rumple (1:01:36)
    I remember.

    Bill Gasiamis (1:01:57)
    I was way more capable of going in focusing on the task at hand and doing the work that needed to be done and then being able to be okay to do the drive home because at some point at the beginning I wasn’t really able or up to the task. But I kind of built ⁓ the muscle again and then got to that stage where by 2019 it was fine. So some people might find going back to work like

    You know, retraining that muscle of being at work and working and focusing and all that kind of stuff. They might find that it’s gonna take a little bit of time to get there and you might have to step back. You might have to decrease the days, decrease the hours and then go again and then try and find where the threshold is, see if you can exceed it and then see how far you can push it and reflect a year, 18 months, two years.

    Pete Rumple (1:02:38)
    That’s right.

    Bill Gasiamis (1:02:56)
    down the track back to notice how far you’ve come.

    Pete Rumple (1:03:00)
    Yeah, right on Bill. I mean, I’m gonna have been out of it for 42 months, probably when I go back. So I hear you loud and clear, and it would have been really tough to do it.

    before now.

    Bill Gasiamis (1:03:20)
    Yeah. Yeah. And you did have a you had a goal to get back to work a lot earlier.

    Pete Rumple (1:03:29)
    Yes, that’s right. And ⁓ that’s another thing, Bill, like I’ll set an intention to do something. I’ll go for it. I’m not ready. I’m not gonna, I’m not gonna do it wrong. I’m not gonna hurt myself. So I set a goal. I try to manifest it, but if I have to push it, I push it.

    Bill Gasiamis (1:03:51)
    Yeah. Just before we spoke and started this episode, you’re you apologize for wearing a hat, which is was unnecessary ⁓ because you have a scar on your head because there was a skin cancer found. And before it became a thing, the you got you had it removed. That’s right. So now when

    So I wanna understand like your mindset now compared to before when you come across ⁓ an issue like that, a health, potentially health issue for people. How do you navigate that now compared to how you might have done things before? ⁓

    Proactive Health Management

    Pete Rumple (1:04:38)
    Beautiful question. Yeah, I used to avoid all that stuff. I avoided the doctor. I don’t want to do this. I want to there’s always a reason to do something else. Now I lean in, I pay attention, I learn I go in, I may agree or not agree with the doctor on certain things. But especially now because I can think again, took me a couple years. But yeah, I lean in.

    I want to I want to get in there. I want to know what’s wrong. What’s right. What have you just had my annual exam two days ago ago. It went great. Labs came back great. I I my neurologist that I used to have to ⁓ visit quarterly said Pete I don’t even need to see you annually now. Just if you need me call me. Other than that you’re good to go.

    And she said, we have not seen this kind of recovery before from what you had.

    Bill Gasiamis (1:05:43)
    Yeah, I have a similar experience when I was in hospital. They booked me in for two months. I was out in a month ⁓ in rehab and I feel like they should have asked me what I was doing because

    It’s really important for people to know the difference between being passive and waiting for somebody to rehabilitate you or being the person who’s driving your own rehabilitation. Like there’s a massive difference and

    Pete Rumple (1:06:13)
    Huge difference, Bill. You’re right. Huge difference. mean, last last call, I talked to you from my sister’s house in December, just a couple months, few months after it, I made the decision to move out on my own, which I did, which really stunk, Bill. That was hard. Like, I there were some nights I couldn’t eat. I was like, I can’t I’m either gonna make the

    the bed or the kitchen, which am I doing? Bed. And I just do it. And but it was important. It was important to start knowing where I could push and not being too reliant.

    Bill Gasiamis (1:06:59)
    Yeah, yeah, the less reliant you can be the better, but still also good to be able to rely on people when you need a little bit of support.

    Pete Rumple (1:07:05)
    Right

    on. Absolutely. don’t, you know, it was, there’s not a right or wrong. It’s like, what do you think? What’s your gut?

    Bill Gasiamis (1:07:14)
    Yeah. Now let’s do a little bit of a community service announcement about this skin cancer. A, how did you notice it? ⁓ What were the steps that you took after you noticed it? How long did you take? Why did they remove it? And so on. Give us a little bit of information. There’ll be people listening here who ⁓ may have noticed a little bump or a lesion or something on their face, their head, their arm, whatever. Give us a little bit of an understanding of how that came to be.

    Pete Rumple (1:07:43)
    absolutely the one thing I’ve done Bill through my life as I’ve stayed disciplined on the dermatologist and I don’t know why I think it’s how I was raised everything else I skipped but the dermatologist I stayed on top of and to your point if I notice something and it seems pervasive like it’s not going away

    I have it looked at and they’ll cut a piece away and see if it’s ⁓ emerging as a basal cell or a potential skin cancer. And that’s what I had with this. was on my head and it was not going away. They took a little piece of it and they’re like, yep, that’s a basal cell. So definitely do not let that grow. At least get it looked at and get

    an opinion on what it is then decide from there.

    Bill Gasiamis (1:08:45)
    What’s a basal cell? Is that something that’s benign?

    Pete Rumple (1:08:49)
    It’s like pre-cancerous it it can I’m not sure exactly but it’s like my fourth one but because I was in the sun a lot bill and ⁓ growing up and I have red hair and I have a fair complexion so my mother had done a great job with the sunscreen I don’t think God is as good a job as she did when I was younger but

    Yeah, it was very important because that can get lethal fast.

    Bill Gasiamis (1:09:23)
    And do you think because of your skin tone or the lack of melanin and your ⁓ red hair, your heritage basically, right, that you made a point of being married?

    Pete Rumple (1:09:37)
    Yep, I’m more prone to it. Absolutely. Yes.

    Bill Gasiamis (1:09:41)
    Yep. ⁓ I wear a hat all the time, especially if I’m out and about. And my favorite hats are like, you know, round brim cowboy style or outback style type of hats.

    Pete Rumple (1:09:54)
    Greg

    Norman hats, Greg Norman hats.

    Bill Gasiamis (1:09:57)
    Yeah, not so, not so Greg, but yes, I’m like, think, think handsome, good looking ⁓ stockman herding cattle on the back of a horse. Think that kind of hat. That’s what I wear. ⁓

    Pete Rumple (1:10:14)
    Gotcha. I love it.

    Bill Gasiamis (1:10:17)
    Yeah, but, if it’s if I’m out and about in a all day type of scenario event, wherever, and there’s a lot of sun, I’ll wear one of those, otherwise, I just wear a cap. And it makes a huge difference, especially when you have short hair, or you have thinning hair or bald hair. It just protects the skin more. And it makes a difference. But the good thing about technology now is it’s so advanced as you can

    spot these things early and you can get them treated and yeah, and you can be okay. And if you are prone, it’s good to be take preventative steps. I like that you previously ignored things and you didn’t go to the hospital and you didn’t think of it as an important thing. Whereas now you tackle it, you’d rather know, you’d rather do something about it, you take preventative action than wait for it to escalate and turn into something

    more sinister, which surprises me that humans would do that with their health and well-being. While they wouldn’t do that at work as a CEO, you wouldn’t avoid an issue, you would tackle it head on and you would make sure that you, that that issue didn’t escalate into something unnecessary.

    Pete Rumple (1:11:40)
    right and Bill that’s part of the problem right because you start saying well I do this at work all the time but you don’t do it for you and it’s got to be consistent in every part of your life.

    Bill Gasiamis (1:11:56)
    Yeah. Consistency, that’s great thing. And it needs to go through all aspects of your life, all avenues of your life. For example, if you’re going to ⁓ look after your health and wellbeing at home, or when you go out with somebody who has a different idea about nutrition, ⁓ the hardest part that I find is being around other people who drink, for example.

    Pete Rumple (1:12:24)
    Right.

    I remember you talking about that. Yes.

    Bill Gasiamis (1:12:27)
    and those conversations that you have to have with people, you have to build the skill of saying, I don’t do that, I don’t smoke, I don’t drink. I’m not saying you shouldn’t when I’m with you, or you don’t, or better if you didn’t, but you do you and I’ll do me. Like I’ll just be consistent with how I behave at home. I’m gonna behave like that when I’m with a group of people who prefer to smoke or drink or not eat the way that I am. You know, that’s the…

    key message there. If you can just be if you’re your what’s the word I’m looking for if you can have ⁓ it be part of your identity that I don’t behave a certain way or I do behave a certain way or then it’s easier to be able to implement it across all facets of your life and not ⁓

    be influenced in a negative way. Because I find personally, if I get influenced in a negative way for the smallest thing and I take the bait, for example, it could lead to a behavior that I don’t want to be doing that I start redoing and I start redoing it for a longer period of time than I would have preferred. Like I wouldn’t smoke, but if I picked up a cigarette and had one, I used to enjoy them so much that I feel like

    I might find myself in a situation where I’ve bought a packet of cigarettes at the end of the first week and now I’m into that crazy habit and trying to work out how I got there again. And it was because I remember trying to give up a lot of times. was because I made, always it was because I made excuses when I was with other people.

    Pete Rumple (1:14:18)
    That’s what I said earlier. Yeah, that’s what I was doing, Bill. And you know, what I do now is I, at any given time, I think deeply about what are the three words I use to describe myself now? And my now is resilient, consistent, and unafraid. Those are my three words. And I constantly kind of

    triangulate and tune on that and say, okay, what, where am I now? And I look at what, are my three words? And those are the three that define me now, because the consistency, the bouncing back and the resilience and the unafraid is like, to your point, if everyone’s doing one thing, I’m going to do my thing. And I’m okay with that.

    Defining Identity Through Resilience

    Bill Gasiamis (1:15:11)
    Yeah, I love that. That you have three words to define yourself now that you’ve given yourself a title.

    Pete Rumple (1:15:18)
    Yes, and it may change, but it has changed over time. But I just I really try to be honest with myself and say, where am I now?

    Bill Gasiamis (1:15:30)
    Yeah. And I like it as well. That fact that it’s changed, it’s flexible, like it’s not necessarily to be rigid and concrete in that it’s like a mindset, like it can shift and alter. And you can work towards something. And you can perhaps master being resilient, perhaps master it, I don’t know, you could probably get real better at it. Maybe mastery is not always possible. But then you could allocate those resources to a new

    Bye!

    Pete Rumple (1:16:00)
    And to your point, Bill, you can get competent and then maybe build to mastery if it’s important enough.

    Bill Gasiamis (1:16:06)
    Yeah. Yeah, I love it. You know, what’s really good about this ⁓ interview is that people are going to be able to go back to the original interview. Have a listen. Yeah.

    Pete Rumple (1:16:18)
    Yeah, I was thinking about that. You’re right. Yes.

    Bill Gasiamis (1:16:21)
    just so that they can see the difference so that, like I said at the beginning of the interview, we could offer people hope and every journey is different and every stroke recovery is different and every stroke injury is different. But ⁓ every person has the possibility and the opportunity to improve their situation. And usually that won’t come from

    the medical team. The medical team will improve the medical side of it and they’ll make you able to go home. But then the other work that needs to be done is up to you. And if you have some examples of people who have done that before, which is what I hope I am, and what I hope a lot of my guests are, Pete, you’re obviously one of those people, then what we could do is hopefully create that

    trigger in people’s minds to go, Bill and Pete said that, you know what, I’m going to look into that. I’m going to read that book. I’m going to ⁓ check out that AI. I’m going to discover what I can do that doesn’t cost me any more to improve one thing in my life. You know, whether it’s just meditating on what the proper walk according to you looks like at home, in your bed.

    the morning that you wake up and then the evening before you go to bed while you’re still recovering your walking. Right? Why not?

    Pete Rumple (1:17:53)
    Yeah, and Bill, you’re absolutely right. And the imagery I try to have people understand is almost like lily pads across the lake or the water.

    Get to a lily pad, then get to the next one. Don’t worry about boiling the ocean. Don’t worry about what it’s going to be in months or year, step by step. And just keep pushing. When your body says don’t push, don’t push. But when you can, and before you know it, you’re kicking ass and you’re

    getting momentum.

    Bill Gasiamis (1:18:42)
    I love it. What a beautiful way to end the podcast. Thank you so much for reaching out to be on the podcast again. I really appreciate you sharing your story and then giving people an insight into what it was like for you, ⁓ nearly what, three years down the track.

    Pete Rumple (1:18:58)
    Yep, absolutely Bill. My pleasure and thank you again for all the work you’ve done.

    Bill Gasiamis (1:19:03)
    What an amazing episode. Pete Rumpel 38 months out from a massive hemorrhagic stroke wheelchair to crossfit, 337 pounds down to 205, 17 medications down to two and a new business launching at 61. The things that stood out to me the most, Pete’s decision in hospital to fast and take back the one thing he could control. The AMCC research, doing the things you hate most on purpose to grow the brain.

    Visualization as a daily recovery tool and the lily pad image. Don’t try to cross the whole lake at once. Just get to the next lily pad. If today’s episode connected with you, please subscribe, leave a review and a comment and share it with someone who needs to hear it. That’s genuinely the best way to help this show reach more stroke survivors. Before I go, heartfelt thank you to my Patreon community. You are the reason this podcast stays free and independent for every

    stroke survivor who needs it. I want to give a special welcome to the supporters who have joined us so far this year. Keith, Nina and Charmaine, thank you so much for believing in this work. It means everything to me and to every one of our Patreons.

    Brian, David, David, Cecilia, Sean, Kim, Jeff, Jordan, Hoyt, William, Mark, Alessandro, JK, Heather, Keith, Nina, and Charmaine, thank you.

    thank you as well. I really appreciate your support. I am truly humbled that you feel it is a worthy cause to support. And if you’d like to support the show, you can go to patreon.com/recoveryafterstroke. Every contribution, no matter the size makes a real difference to the people who find this podcast when they need it most. And finally, my book.

    If you’re in recovery right now and you want a roadmap built from real lived experience, not clinical theory, it’s called the unexpected way that a stroke became the best thing that happened. Everything Pete and I talked about today is in there. Grab it at recoveryafterstroke.com/book. The link is in the show notes. I’m Bill recoveryafterstroke.com/book. The link is in the show notes. I’m Bill Gasiamis. Thanks for being here. I’ll see you in the next episode.

    The post Life 3 Years After Stroke: Pete Rumple’s Remarkable Road from Wheelchair to CrossFit appeared first on Recovery After Stroke.
  • Recovery After Stroke

    Stroke Effects: The Hidden Deficits Jake Faced After a Hemorrhagic Stroke

    09/02/2026 | 1h 21 mins.
    Stroke Effects: What a Hemorrhagic Stroke Did to Jake

    Stroke effects aren’t always obvious. Some show up immediately. Others arrive quietly, long after the hospital discharge papers are signed. For Jake, the stroke effects didn’t end when his life was saved; they began there.

    Four months after a hemorrhagic stroke, Jake can walk, talk, think clearly, and hold a conversation that’s thoughtful, articulate, and reflective. To someone passing him in the street, he might look “lucky.” But stroke effects don’t ask for permission to be visible. They live beneath the surface, shaping movement, sensation, pain, identity, and recovery in ways few people prepare you for.

    This is what stroke did to Jake.

    The Stroke Effects That Came Without Warning

    Before his stroke, Jake’s life was full and demanding. A husband. A father of four. An administrator coordinating drivers and operations. Active. Fit. Always moving toward the next opportunity.

    But in hindsight, the stroke effects were quietly signaling their arrival.

    Jake experienced severe headaches with a rapid onset. Nausea. Vomiting. Visual disturbances. At the time, they were dismissed as migraines. His blood pressure had been flagged as “pre-high” years earlier while living overseas, but after returning to Canada, he found himself without a regular doctor in an overloaded medical system.

    These were early stroke effects masquerading as manageable inconveniences.

    When the hemorrhagic stroke finally hit, it did so decisively, affecting the right side of his body, disrupting speech, movement, sensation, and cognition all at once.

    What Stroke Did to His Body

    One of the most misunderstood stroke effects is how specific and strange the deficits can be.

    Jake didn’t just “lose strength.” He lost motor planning.

    When he tried to write the letter T, his brain sent the wrong instruction. Instead of a straight downward line, his hand looped as if writing an L. The muscles worked. The intention was there. The signal was wrong.

    To retrain that connection, he didn’t practice ten times.

    He practiced thousands.

    This is one of the realities of stroke effects: recovery isn’t about effort alone, it’s about repetition at a scale most rehab programs don’t explain clearly enough.

    Post-Stroke Pain: The Stroke Effect No One Warns You About

    If there’s one stroke effect that dominates Jake’s day-to-day experience, it’s pain.

    Not soreness.

    Not discomfort.

    Neuropathic pain.

    Jake describes it as:

    Burning sensations

    Tingling

    Tightness, like plastic strapping wrapped around his limbs

    At its worst, a “12 out of 10” pain, like being tased while his hand is on fire

    This kind of post-stroke pain often resets overnight. One morning, he wakes up and feels almost normal. The next, the pain returns without warning, severe enough to stop him in his tracks.

    This is a stroke effect that confuses survivors and clinicians alike because it doesn’t follow logic, effort, or consistency. It simply exists.

    And for many survivors, it’s one of the hardest stroke effects to live with.

    The Non-Linear Reality of Stroke Effects

    Stroke recovery doesn’t move forward in a straight line. Jake learned this quickly.

    One week brings noticeable gains.

    The next feels like a regression.

    Then progress returns quietly, unexpectedly.

    This non-linear pattern is itself a stroke effect.

    Early on, these fluctuations feel frightening. Survivors worry they’re “going backwards.” But over time, patterns emerge. Rest days aren’t failures. They’re part of recovery. Silent healing days matter just as much as active ones.

    Understanding this changed how Jake viewed his recovery and how he measured progress.

    Identity Loss: An Overlooked Stroke Effect

    Some stroke effects don’t show up on scans.

    Jake wasn’t defined by his job, but work still mattered. Structure mattered. Contribution mattered. After the stroke, uncertainty crept in.

    Would he return to the same role?

    Could he handle the same responsibility?

    Should he?

    Stroke effects often force people to renegotiate identity, not because they want to, but because they must. The question shifts from “What do I do?” to “Who am I now?”

    For many survivors, this is one of the most emotionally demanding stroke effects of all.

    Recovery Begins With Action, Not Permission

    While hospitalized, Jake made a decision.

    He wouldn’t wait passively.

    He brought in notebooks. Pencils. Hand grippers. Hair clippers. He practiced shaving, writing, and gripping, no matter how long it took. If writing the alphabet took all day, that was the day’s work.

    By discharge, his writing had moved from scribbles to cursive.

    This wasn’t luck.

    It was intentional engagement with stroke effects, meeting them head-on instead of avoiding them.

    What Stroke Effects Teach Us

    Jake’s experience reveals something important:

    Stroke effects are not just medical outcomes.

    They are lived realities.

    They affect:

    How your body moves

    How pain shows up

    How progress feels

    How identity shifts

    How hope is tested

    And yet, understanding stroke effects, naming them, and normalizing them can reduce fear and isolation.

    That’s why conversations like this matter.

    You’re Not Alone With These Stroke Effects

    If you’re early in recovery, you might recognize yourself in Jake’s story.

    If you’re years in, you might recognize where you’ve been.

    Either way, stroke effects don’t mean the end of progress. They mean the beginning of a different kind of journey, one that rewards patience, repetition, and perspective.

    If you want to go deeper into recovery insights, lived experience, and hope-driven guidance:

    Learn more about the book here: The Unexpected Way That a Stroke Became the Best Thing That Happened

    Support the podcast and community here: Recovery After Stroke Patreon

    Final Thought

    Stroke effects don’t define who you are, but they do shape how you recover. Jake’s story reminds us that recovery isn’t about returning to who you were. It’s about learning how to live fully with what remains and discovering what’s still possible.

    Disclaimer:

    This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

    Living With Stroke Effects You Can’t Always See

    Jake reveals the stroke effects that remained after the hospital—pain, motor issues, fatigue, and how he’s navigating recovery four months on.

    Highlights:

    00:00 Introduction and Background

    05:10 Health Awareness and Signs

    16:56 Personal Health Journey and Challenges

    23:11 Recovery Process and Emotional Impact

    38:28 Attitude Towards Recovery

    46:30 Long-Term Recovery and Reflection

    55:06 Work and Identity Post-Stroke

    01:07:40 Pain Management and Coping Strategies

    01:16:16 Community and Shared Experiences

    Transcript:

    Introduction and Background

    Bill Gasiamis (00:00)

    Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jake, a stroke survivor who is very early in recovery and navigating the reality of what stroke actually does to a person long after the emergency has

    What makes this conversation so powerful isn’t just the hemorrhagic stroke Jake experienced. It’s how openly he talks about the stroke effects that followed. The pain, the confusion.

    the nonlinear recovery and the parts of stroke that are hard to explain unless you’ve lived them.

    I won’t give away Jake’s story that’s his to tell, but I will say this. If you’re early in recovery or you’re trying to make sense of symptoms that don’t quite fit the brochures or discharge notes, there’s a good chance you’ll hear something in Jake’s experience that feels confronting and reassuring at the same time.

    Now, before we get into the conversation, want to pause for a moment and say this, everything you hear, the interviews, the hosting, the editing exists because listeners like you help keep this podcast going.

    When you visit patreon.com slash recovery after stroke, you’re supporting my goal of recording a thousand episodes. So no stroke survivor has to ever feel like they’re navigating this

    if you’re looking for something you can lean on throughout your recovery or while supporting someone you love my book, the unexpected way that a stroke became the best thing that happened is available at recovery after stroke.com slash book.

    It’s the resource I wished I’d had when I was confused, overwhelmed and trying to understand what stroke had done to my life.

    all right. Now let’s get into the conversation with Jake.

    Bill (01:40)

    Jake Bordeaux, welcome to the podcast.

    Jake (01:42)

    Hi Bill, how are you this evening?

    Bill (01:44)

    I’m very well my friend. It is morning here. Just gone past 9am. We had a late night last night. We went to the opera and we saw Carmen.

    Jake (01:57)

    Hmm. How’s that?

    Bill (01:59)

    And for those who haven’t seen it, it’s in French and you have to read the subtitles because it has subtitles. I couldn’t read them because I was just a little too far. So I was squinting the whole night. But it’s a great opera, it was a great show, but we got home late so I’m quite tired.

    Jake (02:20)

    I couldn’t imagine that. Luckily I do speak French. So I wouldn’t need the subtitles, but that’s something I was afraid of actually, you know, coming out of the stroke is I was afraid almost that I had forgotten how to speak French or that I’d forgotten how to speak both languages. But luckily I speak ⁓ English and French.

    Bill (02:40)

    With a name like Bordeaux, I would definitely expect you to at least have some idea of French.

    Jake (02:45)

    Yes, indeed, sir. Half English and half French. I’ve been using that largely to my advantage. I’d been working up here in Northern Ontario with Federal Express. So I was working in administration here and sort of coordinating the management and the drivers being the liaison during the two during the day. so, you know, anytime the drivers might have equipment that needs any kind of repair or any kind of issues they might

    come up with on road as well as when they leave the station and when they come back into the station, I’m the guy that they would deal with.

    Bill (03:22)

    Wow, that’s cool. So tell me what was life like before stroke for you? What were you up to? What kind of things did you do? How did you spend your time?

    Jake (03:33)

    Well, life has had a lot of ups and downs for me in the last year’s bill. So, ⁓ I had been living for many years in, in Hong Kong and I’m originally from Canada and, I was born in the seventies, born in Ontario here. And by 2009, I had had various, you know, done grit, various career, choices or opportunities, job opportunities here. And I decided to.

    try my hand at a little something overseas. ⁓ I had an opportunity with a fellow Canadian named Noah Fuller who brought me over wanting to show me how to get into the watch business. And being two ⁓ enthusiasts, you know, being, ⁓ you know, I’d say we were into watch modification, watch restoration, and we were wanting to get a little bit more into building custom parts and building out custom watches.

    ⁓ working with various ⁓ people, military groups, et cetera, at working on their watch project. So he asked me to come to Hong Kong, learn everything that he knew about the business, and hopefully show me what I was gonna get into over there. That worked out, and while I was over there, I met my wife, I love my wife, I’m still with her.

    Stroke Effects: Health Awareness and Signs

    I got together with my wife in 2009 when I had first arrived in Hong Kong and I got married to her in 2010. During that time, Noah unfortunately passed away, so I lost my business partner, but the business continued to grow. So over the years, the business grew with my wife and I running that on our own. ⁓

    Unfortunately, maybe it got some of the attention on the world stage. There’s been a lot of political, we’ll say issues in Hong Kong and leading into the pandemic, business was already suffering. ⁓ Once the pandemic hit and Hong Kong was locked down for a ⁓ big chunk of time.

    that really affected our business and took it down. By the time the pandemic had played its way out, our life over there was looking like it wasn’t panning out the way we’d wanted it to. And a lot of the opportunities that had been unfolding for us all of a sudden came to a close. ⁓ So we moved back to Canada.

    about two years ago and I started working up here and thinking about our next business opportunity. I’m a lot like you and I’m never really satisfied with what I’m doing and I kind of want to reach for the next thing and I kind of want to reach for more. So I like to work a lot. So while I was working on getting the next thing started, I was working with Federal Express.

    My days would be really, really busy. I would get up quite early in the morning and I’d chop wood here. I have a dog that I like to walk. I have a golden retriever. I have four children. So I have three girls and a boy and they’re ranging from four years old to 14 years old. They’re all in school.

    And of course, I was working full time at Federal Express and ⁓ working towards the next thing. So I guess life was pretty active.

    Bill (07:27)

    Pretty helpful. Did you have any sense that, you know, with regards to your health, things might take a turn? Was there any information coming to you that you might see now kind of in hindsight and go, well, that was probably a sign.

    Jake (07:45)

    Yeah, Bill. So I’ve watched a lot of your podcasts and I found them particularly helpful, especially a lot of the ones relating to hemorrhagic stroke. ⁓ Reason being that’s what happened to me. So ⁓ I had a hemorrhagic stroke ⁓ and it took out a large part of ⁓ my capabilities, I guess, mobility on my right side.

    So a lot of my body that’s affected is my right side. ⁓ Now, when I got back here from Hong Kong to Canada, unfortunately, I came here to a little bit of an overloaded medical system, to say the least. So I’m hoping that maybe some of what we’re talking today might help people who are in Canada if they suffer the ⁓ same thing as I did to try and get them on track for us, get them back into recovery. ⁓

    When I arrived here, the system was overloaded. I didn’t have a doctor. So unfortunately, while I had been warned for several years that I had pre high blood pressure and ⁓ the doctors in Hong Kong had been, you know, monitoring my blood pressure and keeping a pretty close eye on things after arriving here in Canada, that wasn’t a case. And so

    you know, it would look now that I think about it, that I was having some warning signs. I was having headaches and I’d say that some of those headaches were pretty severe. ⁓ The headaches would come on like a, like a very fast, ⁓ fast onset headache. I would get very nauseated very quickly. ⁓ And then sort of, would, I’d vomit the headache.

    would pass. At first, I thought I was getting migraine headaches. I’d had one when I was a lot younger. But ⁓ these were coming with some visual disturbance. I was having this horrible headache. was having nausea. So all the things you might expect from a migraine, except that it was going away within minutes and all of a sudden I was back at work. you know, in hindsight,

    that definitely was ⁓ a warning flashes. And ⁓ had I had a proper physician, if I had somebody watching out for me, they may have caught that. I don’t know, there’s no way for us to know that. So what I would say is, if anybody’s having pretty high blood pressure, keep an eye on that. I would say my blood pressure when I had the stroke was quite high.

    And if I had been monitoring that, I might’ve been on top of it. So would you like to hear about the day that it happened or?

    Bill (10:45)

    Yeah, I would in a moment. So with the blood pressure in Hong Kong, were you being monitored and also medicated or was it just you were being monitored?

    Bill Gasiamis (10:56)

    We’ll get back to Jake’s story in just a moment.

    I want to pause for a second and ask you something important. Why do you listen to this podcast?

    For many people, it’s because they finally hear someone who understands what they’re going through or because they learn something that helps them make sense of their own stroke effects without feeling overwhelmed or alone.

    And here’s the part most listeners never really think

    podcast only exists because people like you help keep it

    There’s no big company behind it. No medical organization funding the work.

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    All right, let’s get back to Jake.

    Jake (12:46)

    No, so I wasn’t being medicated for high blood pressure at all. was kind of these, well, it’s not quite severe enough to really do anything about it, so we’ll just keep an eye on it. ⁓ I did have pre-existing ⁓ medical issues. When I was quite a lot younger, I had suffered from ⁓ what some people might call Crohn’s disease or an inflammatory bowel issue.

    and I had some back pain. But other than that, I wasn’t really on any other types of medications. I wasn’t on any kinds of blood pressure medications, any kind of heart medications. ⁓ I wasn’t on any kind of antidepressants or anything like that. ⁓ I would say that I was pretty much feeling like I was in fairly good shape.

    haven’t gained or lost a heck of a lot of weight since the stroke. So what you see is what you get. wasn’t overweight. I wasn’t eating a lot of junk. I don’t smoke cigarettes. So.

    Bill (13:56)

    Yeah. One of those things. I know what you mean. Like I’ve been diagnosed with high blood pressure in the last six months and headaches. Jake, I’ve had headaches for years. I’m talking maybe four or five years. And at the beginning, they were intermittent. They would come and go similar to what you mentioned. And I would be able to get through the day. And I thought they were migraines, although nobody really convinced me that they were migraines. I couldn’t really say.

    That sounds familiar if I look up what migraine is and all the people who I’ve ever asked about a migraine, it never sounded like, I was never convinced by it. And then a little while ago, was at home, excuse me, I was at home with my wife, feeling really unwell. Did my, checked my blood pressure and it was about 170 over 110, 120, somewhere there. And that was, I knew that’s way too high, know, previously.

    I’ve checked my blood pressure maybe on the on perfect day and it was 120 over 80. So for me that was pretty serious. We went to the hospital because of all my history and they said your blood pressure is high. It’s probably a migraine causing you to have a migraine which is then causing your blood pressure to go high rather than the other way around. They didn’t say it’s high blood pressure is causing the migraine and or the headache.

    And then they put me on some migraine medication and they said, if we give you this migraine medication, it’s going to knock you out. You’re going to sleep, but you should wake up without a headache. Well, I woke up with a headache. The migraine medication didn’t do anything. So within a couple of weeks of that particular hospitalization and then going to my general practitioner, he prescribed me a blood pressure medication, came to start on it’s called to help keep the blood pressure down.

    Now I’m trying to get to the bottom of why do I have high blood pressure? That’s the part that’s frustrating me, because no one can tell you why you have high blood pressure unless they check your arteries and they’re half clogged or you’ve got some other issues with your heart or something like that. And I don’t have any of those issues. So now ⁓ it’s one of those things. It’s kind of like, well,

    you have high blood pressure. It might be something that runs in your family. When I check with my dad, my dad says that he has high blood pressure. My dad’s 84. So it’s like, you know, and he says, I started taking blood pressure medication at around 50, which is my age. But that’s still, that’s not good enough for me. Like I’m still not comfortable with, well, your dad did. So you are, and then therefore,

    just move on with life, take this tablet and then move on. Now I’m happy to take the tablet because I do not want to have another hemorrhagic stroke. I’m very comfortable taking a tablet to prevent that, right? No trauma, no traumas.

    Personal Health Journey, Stroke Effects, and Challenges

    But ⁓ it’s a very interesting place to find myself in after going through all the three brain hemorrhages that I’ve already had since 2012, brain surgery, learning how to walk again. Now I’ve had enough. I don’t want…

    I don’t want to be doing this anymore, even though I am finding myself here and I’m tackling it. Part of me is going, man, this is too much. Why do we need to go through this now?

    Jake (17:29)

    Yeah, I wanted to ask you something actually, maybe if you’ve had the same, you brought something back to mind here, is that one thing I did have, again, in hindsight, I had visual disturbance. in 2018, my grandmother, bless her shit, my grandmother passed away and I was abroad and I took it pretty hard. was largely raised by my grandfather, my grandmother.

    And I took it, it was very emotional. And ⁓ when I was grieving, I had an episode where I had a rather bad headache. And again, I had one of these feelings, like I thought I had a migraine headache. Maybe I did, or maybe we’re reading something into it. But coming out of that, I had a visual problem.

    And it was one of my eyes. in my right eye, you know, again, I have my issues now with my right hand side. My right eye had gotten quite blurry. I was having ⁓ issues with my vision in my right eye. And ⁓ a doctor had decided that, well, maybe it’s a form of macular degeneration. And he decided to do a laser surgery.

    at the time in Hong Kong. However, it didn’t have any effect. It didn’t help me out at all. And the only thing that helped that was time. And I wonder again now if the reason why treating the eye didn’t take any effect is because he should have been treating or looking at the brain. I think that maybe the issue might have been a small stroke to begin with.

    and I didn’t realize it at the time.

    Bill (19:25)

    That sounds very plausible, right? That’s I think probably a very logical conclusion to get to. Sometimes, you you hear people lose their vision and the way they discovered they’ve had a stroke is they’ll go to the ophthalmologist and they’ll say, I can’t see. And the guy will go, well, your eye looks perfect. I there’s nothing wrong with your lens. There’s nothing wrong with the macula. The eye pressure is fine. Everything’s fine. And that definitely suggests

    that there is a ⁓ neurological issue of some kind, right? So it’s like, next step is go to the hospital, get it checked out. But ⁓ yeah, well, there’ll be no way of knowing, but I science, I had similar kind of things happen about a year and a half before my first bleed. was at our local football here, which ⁓ my team made the

    what we call the grand final. There’s usually a playoff series and then the last two teams get to the final game of the year and then the one that wins wins the championship. And my team made it and I was there cheering them on, screaming my head off, you know, just being a really passionate supporter and went home that weekend with a massive headache that lasted about five days and ended up in hospital. They did a lumbar puncture. They checked for

    a brain hemorrhage or anything along those lines and they didn’t find anything and they also didn’t find the faulty blood vessel that later would cause the first brain hemorrhage. But when I speak to people about it, everyone will say, well, we’ll never know, Bill. There’s no way of knowing whether they were linked. But in my mind, it’s pretty logical to conclude that that first massive five day headache was

    a sign that something wasn’t right in my brain. And although they had that suspicion of that, they didn’t know what they were looking for. So they couldn’t find the faulty blood vessel. just did a scan, a CT, sorry. Yeah, they just did a CT to actually see if there was any visible signs of a tumor or a bleed or something like that. And since there wasn’t, they weren’t able to diagnose the faulty blood vessel that would later.

    ⁓ bleed three times.

    Jake (21:55)

    That’s incredible, by the way, the three times thing, and that’s got to take a lot of strength to get through. ⁓ I don’t know if I had mentioned to you, how recent this has been. So ⁓ one thing that I’ve noticed with your podcast is that most of the guests who are on have had a considerable amount of time elapse in between when the event has taken place and when they’ve been able to get

    back lot of their capabilities, a lot of their abilities. So how long exactly did it take you to get back to the stage or the state that you’re in now?

    Bill (22:36)

    I would say that I had, ⁓ well, the first three years were tumultuous because every time I was on the road to recovery after the first bleed, then the second bleed happened, that was six weeks apart. And then after the second bleed, I was really unwell. ⁓ Memory issues, couldn’t type an email, couldn’t read, couldn’t drive, couldn’t work.

    Recovery Process and Emotional Impact

    angry, really angry. I was probably in that state for the best part of about six to nine months. And then it started to ease and settle down as the blood vessel stopped bleeding. And then the, and then the blood in my head started to dissipate and kind of dissolved, I suppose. And I think I thought everything was going fine. So between February, 2012 and November, 2014, that’s when I had the next bleed November, 2014.

    the third one. And then when I woke up from that, I had to learn how to walk again. So by the time I got to February 2015, I had been three years in you know, in the dungeon, you know, getting just smashed around by stroke again and again and again, and then brain surgery, then learning how to walk again. And I think personally, I turned the tide maybe

    at around 2018, 2019. So it took another three to four years for me to feel like even though I’m living with all these deficits, I have got enough of my cognitive function back, my physical function back to be able to go back to my painting company, which had been on pause for a number of years. yeah, so all up, you know, from first bleed,

    Jake (24:25)

    incredible.

    Bill (24:30)

    to back to the painting company, you know, it seven years. It was quite a long time. And I hear people have similar kind of stories about five, six, seven years. They’re still dealing with everything that the stroke caused, but they have some kind of a turn, like for the better, some kind of like a shift in whether it’s mindset, whether it’s emotionally or whether it’s physically, they have kind of some.

    Like a fork in the road moment where things change for the better.

    Jake (25:03)

    That’s incredibly inspiring for me. So yeah, you give me a lot of hope because I’ve been going through a lot and I’ve only been at this for four months now. so I had this stroke in late July and upon getting into the hospital, again, I wasn’t able to talk.

    I wasn’t able to use my, couldn’t move my right hand side at all. ⁓ I wasn’t able to go to the washroom, any of the things. I was basically left with kind of like ⁓ a blank slate and everything that I’ve gotten back has been pretty rapid. So I’m really extremely thankful for that, especially that, given that hemorrhagic strokes are rare, ⁓

    consequences seem to be more severe and more often fatal. So, yeah, I’ve only been at this for a few months,

    Bill (26:10)

    Yeah, I was gonna ask what was it what happened on the day of the strike? What was it like?

    Jake (26:16)

    Yeah, so on the day of the stroke, let me get back there for just a second. Right, so on the day of, it was a pretty regular day and I had got up, it was a beautiful day, it was July. ⁓ My family had been on a trip recently, they’d gone to the nation’s capital and visited my family and I was happy to have them back.

    I just bought my wife a new bike and ⁓ I tuned it up. The dog had been out and I was starting work at 2 p.m. So I was about to go in for 2 p.m. and see the drivers for the whole second part of their day until the closing. ⁓ And I ⁓ was biking into work. again, I was incredibly active. ⁓ So I was biking to work and it would be

    generally about a 15 minute bike ride and it’s a lot of uphill, et cetera. And some of the route is through some residential areas and even some pathways that go through the woods. Again, I live in Canada and in particular in Northern Ontario in quite a small town named Kirkland called Kirkland Lake, which is a gold mining town. we’re in a gold mining boom right now.

    And so yeah, I was biking to work, feeling pretty good. ⁓ When I got to work, or when I was just getting to work, I was pretty close to being late ⁓ after messing around with the kids a little bit. And so I pushed myself a little bit harder than I usually do. ⁓ I got to work right on time. I got in a little bit winded.

    And I started getting my equipment together, got all of my equipment and headed to my office and headed to the window where I’d be greeting all of the drivers as they come into the station. And I started to feel a little bit dizzy. So my thinking was though, I probably just pushed it a little too hard and I probably should have had a drink of water. So I grabbed a drink of water.

    And ⁓ I sat back down at my desk and the first drivers started to come in. And as they started to come in, I started to feel like it was hard ⁓ to keep track of what they were saying. I was having a hard time concentrating and that’s really not like me. Usually I’m able to concentrate on four children, a wife, a pet, myself. And when I’m at work, I’m able to deal with the whole station full of

    FedEx workers, drivers, et cetera. So I started asking the drivers, can you just leave your things with me? I’m going to put them aside for a few minutes until I’m back in the game here. I think I’ve winded myself a bit. I’m just going to chill. And the equipment started to pile up, because it was one driver, two drivers.

    three drivers. And as this was starting to go on, I was looking over at a lady who was working next to me in the office. ⁓ And ⁓ I’m very lucky that she was there. And ⁓ I’ll let you know why in a second. But ⁓ I started to look at her and I started to look at the drivers. And I think at that point, she looked at me and ⁓ it struck her there’s something really not right with Jake.

    So she came over and started to ask me some questions and she started to try and direct the drivers away from me so that maybe they’d stop asking questions. And it became pretty apparent to her real quick ⁓ that I was having a stroke. Now, thankfully, this lady’s not usually sitting in the office next to me. It was one of those things where she just happened to be there this day and she happens to work with the fire brigade here.

    and she works with first responders and she’s incredibly well educated as far as first aid and strokes and heart attacks, et cetera. So she was able to recognize what was going on with me right away. ⁓ She had management and she had everybody ⁓ take a look at me and they had the first responders coming right away. The emergency crew showed up within minutes.

    and they started asking me all the appropriate questions and they started lifting me out of there and driving me away. So I got to work, I guess, at about 2 p.m. That was when my shift started. And ⁓ by 2.25, ⁓ my wife was walking home from the neighborhood park with our kids and heard an ambulance.

    go by here, not realizing it was me. I’d been taken off in the ambulance. They brought me to a nearby town and then they airlifted me to Sudbury, Ontario. I guess in our nearby town, they determined that yes, I was having a stroke. They did a very quick preliminary scan. They sent me to Sudbury, Ontario, where they started doing more scans and figured out exactly what was going on.

    Although the medical system had failed me and I didn’t have a doctor going into it, when the rubber hit the road there, they had it together and they got me the appropriate help as fast as possible. That’s probably what helped me to get my recovery online so quick.

    Bill (32:18)

    definitely does the time that you take to get to hospital makes a massive difference. That was a good outcome considering everything that was going wrong at the time. So then how does the hospital stay go? How long are you in the hospital and how does it play out?

    Jake (32:37)

    Yeah, so I arrived in in the hospital in in Sudbury and I was there for for a few days so ⁓ yeah, I was there for a few days and in that time my My ⁓ my wife and ⁓ one of my good friends one of our children there They managed to come and see me and from what they say I was incoherent at the time So I guess I was still able to talk ⁓

    but what was coming out of me was a lot of garbled nonsense. I’ve seen some of your guests say, I thought I was saying, can you please hand me my bag and I need you to bring, and all that was coming out was sort of, blah, blah, blah, blah, like it wasn’t making any sense at all. ⁓ So I was in there for days.

    And once they had me stabilized in ⁓ Sudbury, Ontario, they decided to transfer me and I had my choice between a couple of different towns. So I would say that by the 25th, 24th, 25th, I was stabilized and I was heading to Sudbury on the 25th. ⁓ Once I arrived in Sudbury, I think I was visited, ⁓

    by my folks and my wife and kids. And then I was sent to Timmins, Ontario for my actual recovery. So it was pretty fast. I had the stroke on the 21st and by the 26th, I was in Timmins where I’d spend the rest of my ⁓ recovery time.

    Bill (34:27)

    How did they deal with leaking blood vessel?

    Jake (34:30)

    ⁓ They didn’t. So they had determined that they were going to probably do a surgery. When they were taking me into the hospital, they had told me that there was a ⁓ brain hemorrhage, ⁓ that it was leaking, that they were going to be monitoring it, that it would be likely there would be a surgery, and that I should probably be

    be prepared not to make it through. ⁓ So I guess, you know, they gave me some hope. I mean, they told me that we can hope for the best, but they were quite honest with me at the time in saying you might be going for the rest of your life ⁓ wearing diapers or unable to talk. ⁓ And it’s quite probable that you might not make it out of this.

    Uh, so they monitored it and they continued to bring me while I was in the Sudbury for scans and they continued to monitor the situation. Um, but they didn’t do any surgery. So, uh, I was put on medications to bring the blood pressure down, to keep the blood pressure down. And, uh, and I was placed on those while I was in, in hospital. And I continued to.

    recover all the way through August. And by the end of August, I had come back home. ⁓ while I was in hospital, I was only visited twice because it was far away from, from my home. And, ⁓ I’m honestly, Bill, I’m glad. ⁓ I was really happy. I was able to see my, my, my wife and kids by phone, obviously, you know, the wonders of modern technology. ⁓

    but I was left with a lot of time on my own to reflect and I was left with a lot of time on my own to get better. you know, one of the things I decided once I got to the hospital was I’m not going to spend any time in the lounge. I’m not going to spend any of the time with the other patients who are ⁓ in here, nothing against them or anything like that. But the very first thing I did,

    was I started to try and find more information about what exactly happened to me and ⁓ what are my chances of getting better and what gives me the best chances. And what I came up with was I had better start working on my recovery immediately. yeah, so one of the very first things that I did is I got my notebook into me.

    notebook, got pencils, I got a pencil sharpener, I got one of those, ⁓ you know, hand gripper ⁓ exercise, you know, for your hands. ⁓ And I got a razor blade, and I got my wife and kids to bring in a hair trimmer. And I decided that no matter how long it was going to take me to shave, I was going to do that on my own.

    no matter how long I thought I’m in here, I don’t have anything else to do today. If it’s going to take me all day to cut my hair and shave my face, I’m going to do that. ⁓ If it takes me all day to do the, write the alphabet down, I’m going to get through that. And I went from again, ⁓ scribbles from just scribbles and barely being able to hold onto the pencil to, ⁓ by the time I left the hospital,

    I was writing in perfect cursive.

    Attitude Towards Recovery

    Bill (38:22)

    Yeah, that’s brilliant. I love that attitude. That attitude is probably ⁓ something that holds people in very, like creates a great outcomes for people, regardless of how much the stroke has affected them, regardless of how bad their deficits are, you know, regardless of what version of stroke they caught, they, they had to experience. And this is what I was doing when I was in rehab as well. So I did the same thing when I came back from hospital. So

    My first stay, I came back and we were on the internet checking, you know, is a blade in the brain? What is all this stuff? What does it all mean? Trying to get some answers. The second time, ⁓ six weeks later, I was searching for what kind of food should I be eating? If I’ve had a stroke, what should I be avoiding, et cetera? That was pretty cool to find out and learn, wow, there is actually a protocol that you can ⁓ take that supports your brain health instead of one.

    that doesn’t support your brain health. So that was pretty awesome. And then ⁓ in rehab, I was searching YouTube for videos about neuroplasticity. was searching videos for ⁓ anything that had to do with recovery of a neurological challenge, et cetera. And it was just way better than being ⁓ sort of worrying about my own situation and focusing on me like.

    internalizing it, you know, I was externalizing it and becoming proactive and I found, ⁓ and I found some great meditations. So I’m lying there. I can’t walk. I’m very sleepy. I need to sleep most of the time because I’m exhausted from all of the rehab. I’ll put on a meditation and just let it do its thing in the background while I was healing, resting, you know, recuperating. ⁓ so I think that approach

    just changes the way that your body responds as well because your body wants to step up to the plate. If you set an intention, we’re going through the healing process, this is the path that we’re gonna take, the body follows. If you go through the other part, if you take the different path and go, well, things are not going good for us, we’re doing it really tough, we’re feeling sorry for ourselves, we’re not gonna put any extra effort in.

    the body’s going to go, no, I’m listening. I’ll do exactly what you want. And you get the results that, that your intention has set. Right. So I think that’s brilliant. The way that you went about that and not interacting with other people. kind of get that too, because it can bring you down. Like seeing other people doing it hard can bring you down. And also ⁓ sometimes other people’s attitudes can rub off as well. And they can bring you down if

    They’re feeling bad about this situation and you don’t want to be around people who are going to ruin your vibe. Doesn’t matter who they are or where they are.

    Jake (41:27)

    Right. And one thing that where I think the hospitals and doctors and therapy where I think they really let us down is something that I believe it was on one of your podcasts and someone talking about neuroplasticity is that when we do something for therapy, we should be doing it thousands of times. We shouldn’t be doing it a few times.

    I think where we’re let down is like, ⁓ for instance, I went for my physiotherapy today and I find it helpful and I definitely do go, I would recommend it to anybody. But we will do each of these exercises 10 times. Do this 10 times, do this 10 times, do this 10 times. But what we’re failing to see is that, you know,

    To really make those connections, need to do things hundreds or thousands of times. ⁓ I have a, know, a, for instance, for you, you know, I mentioned the writing. So a place where I have an incredible block is, ⁓ I will go to try and begin something, particularly where I’m going to write something down and I’ll have the intention of writing one thing and something different will come. So,

    I would try and begin a word with the letter T and instead of beginning by going up and then straight down and crossing my T, instead I’m doing a loop like it’s an L. So in order to, you know, retrain, sort of get that, get that connection made, to go and start doing words that begin with the letter T.

    Bill (43:17)

    I have

    Jake (43:24)

    and a lot of times, mean like thousands of times before I could sit down and write a letter T. if people are feeling like they’re not getting anywhere or it’s not coming along for them and they are doing the exercises, I would say don’t give up and do them more. Don’t give up and do them less, do them more.

    Bill (43:33)

    Wow.

    Jake (43:53)

    ⁓ If you’re going to be doing something like walking, if you’re finding that difficult, then I think maybe if you walked around the block on Tuesday, go another 10 steps further and do that for the following week and always just keep adding to it because it does get better. And I don’t know about you, do you find Bill like

    I know one of your recent guests mentioned that it was a challenge for him to deal with how non-linear the recovery is. And I think that only hearing that from other people allowed me to accept that. Because a lot of the time I’ll feel like I’m doing great and things are incredibly better. And then maybe I have a week where I’m doing in respects, I’m doing worse than I was when I was in hospital.

    And I think that that’s really hard to deal with. you have that too, or did you find that? The non-linear kind of feeling? Yeah.

    Bill (44:55)

    Indeed, and then what happens four months, five months, six months, 10 months, is you start seeing the pattern and the pattern is, okay, I’ve made some inroads, okay, here’s the quiet time or the downtime coming and then you feel better about it because it’s not a big deal. You see the pattern and you notice it and it’s less frustrating because that’s actually, it appears as though you’re doing nothing to your head. Your head might be going, oh, I’m not doing anything.

    Long-Term Recovery and Reflection

    sitting on my butt, I’m not able to get through a day of physical exertion or anything like that. I must be going backwards. Well, in fact, your body’s just doing a different version of recovery and it looks different. It looks still and it looks silent and it looks fatigued, but it isn’t going backwards. It’s just a different phase and it needs all of it. You need to do that silent, still, quiet, fatigued resting one. And then you need to do the one which is

    to whatever extent you can, full on, full out, doing too much, going too far, ⁓ over-exerting yourself. And they kind of, you can’t have one without the other. You have to have them both. And ⁓ if you understand that, then you don’t get anxious or upset about it or bothered about it. And you start playing the long game. You stop focusing on today, I didn’t have a lot of effort, but…

    If I reflect on my last six months or nine months, there was maybe only seven days that I was really low or didn’t feel great. The rest were better days or I felt okay or whatever it was. if you start playing when you’re only four months out, it’s hard to play the long game. But when you get to a year or 12 months out, you look back and reflect, you can see that majority of what you were doing was getting.

    outcomes that were favorable and therefore, you know, and therefore you can sort of be okay with the quiet days, rest, the rest of all those. I used to go to loud events, whether they were a concert, a family event, a party, wedding, whatever. If they were long drawn out days, I would have to plan for the next day to be completely a write off, nothing on the calendar.

    No going anywhere, seeing anybody, doing anything so that I could rest properly and get my brain back online so that I could have a good day, the third day, you know? And that’s how we did it for many, many years. And I remember one time when the shift came, when I said to my wife, I am not doing anything tomorrow. You make sure that whatever you do, you do without me. You’re going to go and do your thing, but I’m not going to be involved.

    And then waking up in the morning and going, hey, I feel fantastic. What are we doing today? And she’s like, I didn’t plan for you, but okay. ⁓ let’s get the ball rolling on something. So we did something minor, but it was more than nothing. And that was my, okay. My moment of things are shifting and I’m able to recover overnight with a good night’s sleep quicker than I was.

    doing previously.

    Jake (48:19)

    That’s great. That’s great. Yeah. A lot of this, I really appreciate talking to you and I appreciate hearing your guests who have been at this a lot longer than I have. ⁓ I’m incredibly encouraged by how well I’ve done so far, but it’s also, there’s a lot of questions. ⁓ For instance, I’m in this stage where I don’t know, Bill, if I’m going to make it back to the same job

    as I was doing before, don’t know whether it’s reasonable to think that. Right now I’m doing, you know, going through all the steps that I need to go through and doing all the evaluations that I need to do. ⁓ But I’m not sure what the outcome is going to be. And that’s a little bit hard because I’m, you know, like most people who are entrepreneurs or, you know, have large families, we like to have an element of control, you know, with things.

    So it’s been hard to just sort of sit back here and not know what’s coming along. As far as work goes, I don’t know. Luckily, you know, I have a building here where I do own the building and I do have commercial space downstairs. So maybe I have the option to now use that space for myself. And ⁓ maybe I’ll have to be, maybe I’ll be forced to go back into.

    entrepreneurship and open my own business. Maybe going back to work ⁓ is not the path for me. We’ll have to wait and see.

    Bill (49:56)

    It will emerge. You’ll get a sense of it. I had ⁓ three years where I worked for another organization and it was a completely different field and they were, the role was a very entry level administrative role. Very, we’re talking a role that would probably be replaced by AI now. ⁓ So we, I was doing that for three years and what was good about planning and trying to get back to that level of

    effort and work was that it served a purpose. And part of the purpose was talking to people, traveling, ⁓ doing work on the computer. It was retraining me as I was getting comfortable with the role, getting used to traveling, getting back to being in loud environments, et cetera. So it was difficult, was tiresome, it was challenging, but it was…

    kind of like its own therapy. And when it served its purpose after three years, I was done. I just said, okay, I’m out of here. going back to running my own business again. And I’ll be, I’ll do that as slowly or at my own pace in any other way that I can so that ⁓ I create the whole, all the rules around the amount of hours that I attend, the type of work that I take on.

    You know, so if I was too tired to work the following week, I would just tell my clients I’m busy for a week and I can book you in two weeks down the road, you know. So that was what was good about going back to my business. And also what was good about going back to a job for somebody else because their expectations, you know, working for a corporation, the expectations are far lower than the ones that we put on ourselves when we’re working.

    for ourselves. So I know some people think working for a corporation is really stressful and all that kind of stuff. And it probably is. No. But I mean, I was barely working six hours a day. Whereas working for myself six hours a day that the day’s just starting, you six hours. You haven’t even hit lunchtime yet. So it’s interesting to think about work and how ⁓

    and how you can use it as a therapy.

    Jake (52:23)

    It is well, I mean the difference for me is that I was actually in that role that you’re explaining right now when I had the stroke so I I’d gone through a whole bunch of very difficult things in Hong Kong and upon coming back here to Canada, I was almost feeling like I I had a lot of stress going on and I had a lot of things that I needed to sort out and ⁓

    there was a lot of things that we need to settle with the kids. There was all sorts of stuff that needed to be done. So the job that I was working was actually, it was already fulfilling that role that you explained. I was having that less responsibility. was going in for a specific amount of hours that they were letting me know. So that was exactly it. was an administration job, but

    it was really not close to the amount of responsibility that I was used to having. ironically, now that this has happened to me, it might be the amount of control that I have over the amount of worked that might be an advantage after going to stroke. I’d be interested to see

    or to hear more about ⁓ how people deal with the change that comes with the different type of work they might be forced into, forced out of, and how they deal with that. Because I think that a lot of people deal with, ⁓ they think of their employment or they deal with their life in this sort of way, like people often ask, especially in Asia.

    What do you do? The first thing that people do if you’re in Hong Kong is they hand you a business card. They call it a name card there. And the very first thing that you do when you meet somebody before you even speak is you hand them the card and you each examine each other’s cards. So this idea of like, what I do is who I am. And I, and I think that when you have something like this happen to you often

    what you do must change. when you’re identifying with what you do, you’re sort of declaring that as your title, who you are, I would imagine that’s pretty tough. Luckily, I wasn’t tied to Federal Express, thankfully.

    Work and Identity Post-Stroke

    Bill (55:00)

    Yeah, I hear you. is, people will work as a lawyer for 20 years or 30 years, have a stroke, and then it’s like, well, who am I now? What am I now? And that’s the challenge with working and identifying as the work that you do. know, those days are gone in theory. You know, you don’t get named John lawyer anymore. You don’t get named John banker.

    anymore, you you don’t get the your surname from the occupation that you do back in the day, you know, Baker, carpenter, plumber, you know, all those people, they were their entire job, they did it for 3040 5060 years, that was what they did. And then when they couldn’t work anymore, well, they still identified as john plumber, because they had the name, the name was

    given to them or John Carpenter or whomever. The thing about it is now with jobs being so ⁓ not long term anymore, you get a job or you go to a particular employer and then two, three years you’re in another role or another title, et cetera, ⁓ or you’ve moved up the corporate ladder, et cetera. Well, if you’ve never even done that, if you’ve only ever worked and you haven’t explored your interests,

    ⁓ hiking, walking, running, playing ball, ⁓ becoming a poker player, ⁓ whatever, whatever it is other than my job, you’re very, it’s understandable that it’s very narrow how you can explain to somebody how you occupy your time. Like what do you do? Well, I do plumbing, but I also do poker.

    ⁓ I do this, but I also do that. I’m that guy. Like when you ask me, sometimes I will literally be in a painting outfit, not so often now, but my painting clothes, and then I’ll take them off and I’ll sit in front of the computer and I’ll record a podcast episode. And then at the end of the day, I’ll be doing a presentation somewhere, speaking publicly on a particular topic at the moment. My favorite topic is post-traumatic growth.

    When somebody asks me, what do you do? If they know me, they know I do podcasting. They know I do painting. They know I do speaking. They know I’ve written a book. ⁓ they know all these things about me. If they don’t know me, depending on which room I’m in, I’m a podcaster. If I’m in one room, I’m an author. If I’m in another room, if I’m in another room, I’m a painter and so on. And what that allows me to do is.

    not be tied down to my entire existence being about only one thing, because I think that would be boring as, and I would hate to be the guy that only knows something about painting, how to paint the wall fantastically. mean, great, maybe, but not really rewarding, and not a lot of ⁓ spiritual and existential growth in painting a wall. I solve a problem for you, but I haven’t gained anything.

    other than money for me. It’s not really, you know, it’s not my cup of tea anymore. Now I get to have a podcast, I get to make way less money out of a podcast episode and yet reach hundreds and thousands of people and feel really amazing about that. And what that does is that fills up my cup. That allows me to fill up my cup on the down days where I’m not earning a living. And then it allows me to go earn a living.

    and then not feel like all I’m doing is working and going through the maze all day every day and just being on the constant cycle of the boredom and the sameness and all that kind of stuff. So I sprinkle a little bit of this and that into my life so that I don’t have ⁓ the same day twice because I can’t cope with the same day three times. Twice is a real bad sign for me. If there’s a third day coming, that’s gonna be the same as yesterday.

    I’m not up for that, I don’t want to know about it.

    Jake (59:21)

    Right. Well, that also helps with your recovery. I think like, as you say, you do a lot of different things and that helps a lot. Right. So, you know, one, for instance, is, know, the, of the first things I started to think of when I was in the hospital in Sudbury and thinking of getting home is my gosh, it’s going to start getting cold soon. Winter’s going to hit. And I really have to start getting that wood all stacked. Right. So

    So, you know, here I am, I’m benefiting from it now. I burn wood all winter, but, ⁓ you know, I spent a lot of my rehab ⁓ stacking wood. And I mean, that’s incredibly great physiotherapy, right? Whether you’re stacking wood or like you said, you made me think when you’re talking about painting, I’m thinking about like the karate kid, right? Like with wax on wax on paint on, this is the kind of stuff that gets you out of one particular mold.

    And with your brain sort of like focused on recovering in one single area, you can recover in all these different areas. And I think they contribute to like a big picture of your recovery.

    Bill (1:00:34)

    I agree with that. It’s exactly right. It’s you know standing on the ladder which I do less of these days because I Felt off about a year and a half ago. So standing on the ladder and Getting down the ladder holding a paint can and applying paint ⁓ Putting drop shades down and picking up tubs of paint, you know ⁓ That whole every part of that physical activity is

    using a different part of the brain. Writing a book, even if it’s only 10 minutes a day, writing half a page or 10 paragraphs or whatever it is, that uses a different part of the brain. ⁓ Public speaking, that trains and uses a different part of the brain. Everything that I do definitely kind of helps to rewire the brain in many, different ways and supports my ongoing recovery and… ⁓

    is and the idea behind it amongst other things, the idea behind it from a neurological kind of perspective is that it activates more of the brain. The more of the brain that’s activated, the more chance you are of creating new neuronal pathways and having ⁓ more options for healing or recovery. And then it works emotionally for me, it works mentally for me. Do you know, so I get…

    the emotional fitness and the mental fitness out of it. Speaking on the podcast, meeting people gives back. you know, that serves my, I need to serve other people purpose. Do you know, like, it’s just so much, everyone ⁓ who knows me kind of knows that I wear a lot of hats. I kind of.

    I kind of like, I do it. I show people like when they’re saying, what are you up to today? I’ve been wearing a lot of hats today. And if I’m not wearing a hat, like I pretend that I put another one off or just took one off when I’m sitting with them or talking with them. It’s crazy how many things I do. And about the only hat I would prefer not to wear right now is I prefer to put the painting hat down.

    and just hand that over to somebody else and just go, I think that part of my life’s done and I’ll move on to other things.

    Jake (1:02:57)

    If you don’t mind, have one, there’s one more thing that right now that I’d like to mention just before I forget. Is that all right? All right. All right. So the only other thing, the thing that I’ve been dealing with myself and I don’t know how many people deal with it or don’t deal with it. I know that not everybody does. don’t, I deal with a lot of post, uh, post stroke pain. So while I don’t have

    Bill (1:03:04)

    Yeah, of course.

    Jake (1:03:25)

    ⁓ the misfortune of losing use of my feet or losing use of my hand. I mean, it’s limited. do therapy, but I’m able to use my hands. I’m able to write and all this. But coming along with that is an incredible amount of ⁓ burning, tingling ⁓ sort of ⁓ feelings like there is ⁓

    almost like the, know, if you can think of newspapers when they’re delivered in a bundle and they’ve got this kind of plastic strapping around it. ⁓ It’s usually it’s yellow, you know, this sort of plastic strapping. I feel often like that is wrapped around my arms, like it’s wrapped around my leg. I deal with a lot of this kind of stuff, unfortunately. So again, I mean, I’m not going to sit here

    and whine about it because again, ⁓ I can walk, I can do all the things that I need to do and I’d rather have that than what I do. But I’m wondering if it’s really common for a lot of people to have this, you know, post stroke pain.

    Bill (1:04:44)

    If

    10 was the worst pain you’ve ever experienced in your life, that’s like we’re talking about 10 is somebody’s cut your limb off ⁓ and one is no pain at all. Like where would the pain be for you?

    Jake (1:05:00)

    Well, thankfully, again, thankfully ⁓ I’ve had some progress in this. So when I first came to, when I was first starting to get all the feeling back, ⁓ I started to notice that some feeling wasn’t coming back. But while I was in the hospital, I was on quite a lot of medication. So I was on some pretty heavy painkillers. ⁓

    I think hydro-morphone, things like this. And I came off of those when I was coming home and a lot of the feelings started coming back. I would say that some days and at some times that pain can be what I would say maybe it’s a 12 out of 10. Like it’s bad. at some points I’ve been left

    doing nothing but be able to just really just sit there and cry. I’m going to be honest with you. And the pain could be quite severe. Now luckily those days are few and far between. It’s not all the time. ⁓ And here’s the deal. The thing that’s very strange with the post stroke pain or the intensity of it is that it’s like

    going to sleep or it’s like the start of a new day, the beginning of a new day is like a reset button’s been hit. So for instance, I could wake up on a Monday and I could be hit with the worst pain that I’ve ever had in my life. It feels literally like I’m being hit with a taser gun on the right side of my body and that while somebody’s hitting it with the taser gun, they’ve lit my hand on fire. And, ⁓

    And then the very next day after I’ve gone to sleep, I woke up and I’ve had the rest. I wake up almost scared to move because for me, sort of when I wake up and I haven’t moved yet, it’s almost like nothing’s happened to me. It’s like I wake up and I don’t know that I’m numb. don’t know that I’m in pain. don’t know that all this is going on. And then I start to move and sometimes I can sit there and feel a relief. Think, wow.

    There’s nothing severe going on. This is pretty good and it’s going to be a great day. Or sometimes I can be struck with a type of debilitating pain that I can’t even describe. Yeah.

    Pain Management and Coping Strategies

    Bill (1:07:34)

    Well, what you’re describing is very common. I know a lot of people going through post stroke pain. ⁓ It is a thing. I have a very minor version of exactly the thing that you described about how the tightness and things wrapped around ⁓ your hand, like the newspaper.

    that’s kind of what I feel on my left side, the whole left side all the time and the burning and tingling sensation all the time. And okay, on my worst days, these days, like it’s probably, you know, I know, it’s probably a four and a terrible one would be a five, but it doesn’t get there much. And what I’ve noticed is that the, either I’ve become more tolerant of it or my

    my pain has decreased in my awareness. Like I’m aware of the fact that my limb is in the state that it’s in. And sometimes I’ll go to get a massage to get the muscles loosened up because they kind of cramp up and they don’t release. And my muscle will go well. You’re really tight today. Everything is real tight. know, have you been in pain? And I’m like,

    No, I haven’t been noticing the pain, ⁓ I thought it was time for a massage, but I didn’t realize how tight everything was and how everything was working. So when I have a morning, when I have a, in the beginning, I beg your pardon, I used to wake up Monday morning was the best day. And then by Friday evening, if I’d done five days worth of work, Friday evening was the worst day.

    because my resilience for recovery had decreased, waned over those last two days of the week. And then I needed Saturday and Sunday to get back to it. So post stroke pain is very, very common. A lot of people are experiencing it. ⁓ I would encourage people who are listening here on this episode, if you’ve got all the way through it, ⁓ just leave some comments in YouTube. Just let us know.

    If you’re someone who’s experienced any of the things that Jake has inquired about, maybe we can start a conversation, give some more insights to Jake. And then you’ll find that ⁓ there’ll be specific kind of post stroke pain communities, I would say on places like Facebook or somewhere there. There might even be clinics specifically in Ottawa or in the areas that deal with

    ⁓ neurological kind of pain. There are clinics that deal with that. I don’t know if anyone has found other ways to get around it other than pain medication and to what extent, but I know that I feel my deficits more when I eat really badly. So maybe something that you might pay attention to is if you have a particular food, if you diarize what you eat and then

    notice how you feel the next day or a day later or half an hour later or half a day later, that might give you bit of an insight. I used to notice some of my deficits get worse after high carb meals. And then that would enable me to go, okay, I’m gonna try that again, see if it happens again, and then avoid that particular type of meal or that percentage of carbs on my plate as opposed to protein or vegetables. So just one of those.

    little things that might help, but it’s not going to turn a 12 out of 10 into a five out of 10. Do you know it’s, there’s just little strategies that just kind of support, ⁓ your, the way you experience your body all the time and not all the time, like the way that you influence how you experience your body, it supports that.

    because I used to find that I used to make my deficits worse by doing the wrong things. And my whole aim in my life was if I’m doing that and that’s making my deficits worse, then I don’t want to be the guy that’s making my deficits worse. Alcohol is a classic example of one of those things. I drink, I feel like I’m having another stroke. It’s like, forget that, I’m not going down that path. And people who have had a stroke less than 12 months.

    ago should not be drinking at all. In fact, if you’ve had a stroke, my recommendation is to never drink alcohol ever again. I didn’t drink for the first five years after my stroke. And then I’ve had maybe three or four beers a year since then ⁓ at the most, you know, so.

    Jake (1:12:32)

    thought of it terrifies me, be honest, just anything like that terrifies me. Like, don’t like the thought of it. Like, had I been a smoker, I probably would have quit. don’t like the thought of like, I feel like even like if I even if I drank that one beer, and then I did have a stroke, then I won’t know whether that’s what did it or not. You know what I mean? Like, I don’t want to be the person who precipitates the next event.

    Bill (1:13:00)

    Imagine having high blood pressure without smoking and then smoking and making it even worse. It’s pretty terrible. I used to smoke and I stopped as well after the first brain hemorrhage.

    You know, what a waste of time and effort putting money into cigarettes and filling my lungs with chemicals that shouldn’t be there. It’s just crazy that I was doing that, but nonetheless, same with alcohol. It’s just part of the culture. So we do what the culture suggested we did. We did it. And then I never really enjoyed it or I never really got anything out of it other than being.

    inebriated and then again, it was like what for it’s not serving a benefit. There is no benefit. Now I people smoke and drink to ⁓ intervene in their emotional state, you know, to, dull some emotional pain and all that kind of stuff. All right. Short term, maybe that’s a good strategy for maybe one week or two weeks. But then after that, there is no strategy that I think.

    is worth putting that much time and effort into and money into substances to quell your emotions. You might as well put that time, money and effort into the psychological, emotional rehabilitation so that you become free of those emotions and experiences. And then that way, you know, gain wisdom rather than…

    avoided pain and that’s the way I see it. So I know that alcohol serves a lot of purposes, but maybe this is some just food for thought, give people a different way of contemplating how they’ve gone about their life before, you know.

    Jake (1:14:56)

    Yep. Yeah. Well, I would say that, you know, as far as things go, like smoking, like smoking, did when I was quite, quite a bit younger, I did quit, you know, when my first daughter was born. So I did have that as a, probably as an ongoing risk factor, you know, that, that, that may have been lingering behind. Other than that, ⁓ yeah, I don’t see the, the, I don’t see the purpose. I, I’ve watched some of the guys who were in hospital,

    four stroke, that’s part of the reason why I chose not to hang around with the other folks who were there at the lounge and in the hospital, is they were there in hospital four stroke and they were already outside smoking. And ⁓ it blew, to be honest, it blew my mind. it was amazing to me. They were smoking, they were having a whole lot of fast food.

    Bill (1:15:38)

    Yeah.

    Jake (1:15:51)

    brought into the hospital by their buddies and they were doing all these things and I couldn’t fathom it. I guess maybe it’s, I think there’s just two different kinds of people, right? And I think that the ones who want to get better, they always end up watching your podcast.

    Community and Shared Experiences

    Bill (1:16:10)

    at some stage, I so. I hope so, you know. I don’t profess to know anything or, you know, but I can say that the people that I speak to do know a lot and together, ⁓ even if you just get one little gold nugget out of an episode, that’s job done, you know. We’ve done the job, just different way of thinking, experiencing, knowing that you’re not alone. You know, your questions are really cool.

    in that what you’re trying to do is work out whether there’s other people in your situation. Now that will maybe do a couple of things that might make you feel better that you’re not alone, but it also might make you feel like, if I’ve been here, if I’m here and they’ve been there, maybe somebody is working on this situation, know, this issue, because there’s a lot of people there, right? So then that helps you find resources. ⁓ People might have hacks on how to improve or…

    I’ve become something that you can catch up on really quickly, know, four months into your recovery instead of wait 10 years to find it out. That’s the whole purpose of this. It’s like, how do we decrease the time that it takes for people to come across that next gold nugget, you know, that’s going to take them in the right direction. ⁓ I really appreciate you reaching out and joining me on the podcast, Jake. think, ⁓ it’s been a great conversation. I look forward to actually hearing about you.

    say a year from now, just to see how far things have come, because I feel like you’re gonna have made massive strides. And even though you might be still dealing with some challenges related to the deficits, I think you’ll have a lot of solutions and it’ll be worth hearing about.

    Jake (1:17:52)

    Thank very much, Bill. It’s been really great talking to you and I’ve really, really benefited from your podcast. Like I’m sure a lot of other people have, but I just really felt like ⁓ I wanted to at least give back to some people who might be coming across this in an early stages stroke like I was. ⁓ hopefully some people can benefit from our conversation. Bill, thank you so much.

    Bill (1:18:19)

    Thank you, mate.

    Bill Gasiamis (1:18:20)

    Thanks so much for listening to this episode of the Recovery After Stroke podcast. And thank you to Jake for sharing a story that really takes courage to tell, especially so early in recovery.

    One thing I hope you’ll take from this conversation is that stroke effects aren’t always obvious

    and they don’t always follow a neat, predictable path. Recovery isn’t just physical, it’s emotional, it’s frustrating, it’s confusing, and sometimes it’s painful in ways no one prepared you for.

    Jake’s story reminds us that healing doesn’t mean returning to who you were. It means learning how to live with what’s changed while we’re still moving

    this episode helped you feel understood or gave you language for something you’ve been struggling to explain, remember that you can support this work

    at patreon.com/recoveryafterstroke. Every contribution helps keep these conversations online and moves us closer to my goal of recording a thousand episodes. So no stroke survivor ever feels like they’re doing this alone. And if you haven’t already, you can order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened.

    by going to recoveryafterstroke.com/book.

    Many people expect it to be just my personal story, but it’s actually a practical companion for stroke survivors and caregivers filled with insights I wished I’d had

    when I was lost trying to rebuild my life. Thank you for being here. Thank you for listening. And remember, you’re not alone in this.

    See you on the next episode.

    The post Stroke Effects: The Hidden Deficits Jake Faced After a Hemorrhagic Stroke appeared first on Recovery After Stroke.
  • Recovery After Stroke

    Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living

    04/02/2026 | 1h 13 mins.
    Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living

    When Brandon Barre woke up after his stroke, half of his skull was missing.

    Doctors had performed an emergency craniotomy to save his life after a severe brain bleed. His left side barely worked. His memory felt fragmented. Time itself seemed unreliable; days, weeks, even months blurred together into what he later described as a kind of perpetual Groundhog Day.

    And yet, amid one of the most extreme medical experiences a person can survive, Brandon remained unexpectedly calm.

    This is a story about craniotomy stroke recovery, but it’s not just about surgery, rehab, or timelines. It’s about identity, mindset, and what happens when your old life disappears overnight, and you’re forced to rebuild from the inside out.

    Life Before the Stroke: Movement, Freedom, and Identity

    Before his stroke, Brandon lived a life defined by movement and autonomy. He worked in the oil fields as an MWD specialist, spending weeks at a time on drilling rigs. Later, he left what he called “traditional life” behind and spent years traveling the United States in an RV.

    He found work wherever he went, producing music festivals, building large-scale art installations, and immersing himself in creative communities. Stability, for Brandon, never meant stillness. It meant freedom.

    Stroke wasn’t on his radar. At 46, he was active, independent, and deeply connected to his sense of self.

    The Stroke and Emergency Craniotomy

    The stroke happened in Northern California after a long day of rock climbing with friends. Brandon didn’t notice the warning signs himself; it was others who saw that his arm wasn’t working properly. Later that night, he became profoundly disoriented.

    He was found the next morning, still sitting upright in his truck, barely conscious.

    Within hours, Brandon was airlifted to UC Davis Medical Center, where doctors removed a blood clot and performed a large craniotomy due to dangerous swelling. Part of his skull was removed and stored while his brain recovered.

    He spent 10 days in intensive care, followed by weeks in inpatient rehabilitation.

    Remarkably, he reports no physical pain throughout the entire process, a detail that underscores how differently each brain injury unfolds.

    Early Craniotomy Stroke Recovery: Regaining Movement, Losing Certainty

    Physically, Brandon’s recovery followed a familiar but still daunting path. Initially, he couldn’t walk. His left arm hung uselessly by his side. Foot drop made even short distances difficult.

    But what challenged him most wasn’t just movement; it was orientation.

    He struggled to track days, months, and time itself. Short-term memory lapses made planning almost impossible. Writing, once a core part of his identity, became inaccessible. He could form letters, but not their meaning.

    This is a common but under-discussed aspect of craniotomy stroke recovery: the loss isn’t only physical. It’s cognitive, emotional, and deeply personal.

    “It’s kind of like I’m in this perpetual day ever since the stroke… like Groundhog Day.”

    Technology as Independence, Not Convenience

    One of the quiet heroes of Brandon’s recovery has been voice-to-text technology.

    Because writing and spelling no longer function reliably, Brandon relies on dictation to communicate. Tools like Whisper Flow and built-in phone dictation restored his ability to express ideas, stay connected, and remain independent.

    This matters.

    For stroke survivors, technology isn’t about productivity. It’s about dignity.

    Identity Reset: Slower, Calmer, More Intentional

    Perhaps the most striking part of Brandon’s story is how little resentment he carries.

    He doesn’t deny frustration. He doesn’t pretend recovery is easy. But he refuses to live in constant rumination.

    Instead, he adopted a simple principle: one problem at a time.

    That mindset reshaped his lifestyle. He stopped drinking, smoking, and using marijuana. He slowed his pace. He became more deliberate with relationships, finances, and health decisions. He grew closer to his adult daughter than ever before.

    The stroke didn’t erase his identity, it refined it.

    Taking Ownership of Craniotomy Stroke Recovery

    A turning point came when Brandon realized he couldn’t rely solely on the medical system.

    Insurance changes, rotating doctors, and long waits forced him to educate himself. He turned to what he jokingly calls “YouTube University,” learning from other survivors and clinicians online.

    That self-directed approach extended to major medical decisions, including choosing monitoring over immediate invasive heart procedures and calmly approaching a newly discovered brain aneurysm with information rather than fear.

    His conclusion is clear:

    Recovery belongs to the survivor.

    Doctors guide. Therapists assist. But ownership sits with the person doing the living.

    A Message for Others on the Journey

    Toward the end of the conversation, Brandon offered advice that cuts through fear-based recovery narratives:

    Don’t let timelines define you.

    Don’t rush because someone says you should.

    Don’t stop because someone says you’re “done.”

    Every stroke is different. Every brain heals differently.

    And recovery, especially after a craniotomy, continues far longer than most people are told.

    Moving Forward, One Intentional Step at a Time

    Craniotomy stroke recovery isn’t just about regaining movement. It’s about rebuilding trust with your body, reshaping identity, and learning how to live with uncertainty without letting it dominate your life.

    Brandon’s story reminds us that even after the most extreme medical events, calm is possible. Growth is possible. And a meaningful life, though different, can still unfold.

    Continue Your Recovery Journey

    Learn more: https://recoveryafterstroke.com/book

    Support the podcast: https://patreon.com/recoveryafterstroke

    Disclaimer:

    This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

    Brandon’s Story: Surviving a Craniotomy, Redefining Identity, and Recovering on His Own Terms

    He survived a stroke and craniotomy, then calmly rebuilt his identity, habits, and life one deliberate step at a time.

    Research shortcut I use (Turnto.ai)

    I used Turnto.ai to find relevant papers and sources in minutes instead of hours.

    If you want to try it, here’s my affiliate LINK

    You’ll get 10% off, it’s about $2/week, and it supports the podcast.

    Highlights:

    00:00 Introduction and Background
    01:52 Life Before the Stroke
    03:32 The Stroke Experience
    11:03 Craniotomy Stroke Recovery Journey
    17:09 Adjusting to Life Post-Stroke
    28:46 Living Independently After Stroke
    35:09 Facing New Challenges: Aneurysms and Uncertainty
    42:13 Support Systems: Finding Community After Stroke
    47:06 Identity Shift: Life Changes Post-Stroke
    58:39 Lessons Learned: Insights from the Journey

    Transcript:

    Introduction and Background

    Brandon (00:00)
    next morning

    was still in the driver’s seat with my head on the steering wheel.

    and I couldn’t make either of my arms work

    I had been bleeding into my brain for 12 hours overnight they had to go ahead and do a,

    craniotomy. And so they took this whole side. It was a big craniotomy.

    They took that whole section of my skull out, put it in the freezer

    Bill Gasiamis (00:27)
    Before we begin today’s episode, want to take a moment to speak to you directly. If you’ve had a stroke, you already know this part. The hospital phase ends, but the questions don’t. You’re sent home expecting to get on with it. And suddenly you’re left trying to work out recovery, mindset, fatigue, emotions, sleep and motivation all on your own. You shouldn’t have to. That’s why I wrote my book, The Unexpected Way That a Stroke Became the Best Thing That Happened.

    Not to tell you what to do, but to walk beside you and show you the tools real stroke survivors use to rebuild their lives when the system stopped helping.

    and now with this book, you won’t have to figure it out alone.

    You can find that at recoveryafterstroke.com/book. All right, let’s get into today’s episode. Today, you’re going to hear from

    Brandon Barre. Brandon was 46 years old, active, independent and living an unconventional life when he had a stroke that led to a craniotomy.

    where part of his skull was removed to save his life. What stood out to me immediately about Brandon wasn’t just the severity of what he went through. It was the calm grounded way he approached recovery, identity and rebuilding his life. This is a conversation about stroke recovery. Yes, but it is also about mindset, ownership and what happens when you decide to take recovery into your own hands.

    Life Before the Stroke

    (01:52)
    Brendan Barre, welcome to the podcast.

    Brandon (01:54)
    Thank you, man.

    (01:56)
    You struggled a little bit getting here. There’s a couple of little things that caused a bit of a challenge for you. What are those things?

    Brandon (02:05)
    Well, I mean, first of all, I’m, I’m, I’m, even before my stroke, I was never very computer-y. Um, so using my phone for more than just making phone calls is kind of new to me. Um, so yeah, a new microphone, that was fun. And then I had made a bunch of notes, not realizing that I probably wasn’t gonna be able to see those notes. Um, you know, so that was also a little bit of a issue, but uh, but yeah, other than that, man.

    Not much, you know, I mean I’m here.

    (02:37)
    Yeah. I remember receiving your emails about, I’m not sure what day we’re on. I need to reschedule all that kind of stuff. Stuff that I used to do heaps. I remember in the early days of my kind of stroke recovery, I used to make appointments, put them in my calendar, get reminders about my appointments and still be confused about the day, the time and the location of the appointment.

    Brandon (03:04)
    Yes, absolutely. That’s a big thing for me too. know, and I mean even just, you know, remembering from minute to minute where of what day, what month and everything I’m in right now is a little bit tricky still. It’s getting better, but ⁓ but yeah, I still have a lot of trouble. I can always think of every month except for the month that we’re currently in.

    (03:24)
    Okay, so you have like a short term memory thing, is it? Or…

    The Stroke Experience

    Brandon (03:28)
    Yes, yes, have short-term memory issues. ⁓ A lot of times ⁓ I struggle to find, like I said, the date and everything else. ⁓ But I don’t know, man. It’s kind of like I’m in this perpetual day ever since the stroke, and I have trouble keeping track of exactly what that is on everybody else’s time frame.

    (03:53)
    Like a, like a groundhog day.

    Brandon (03:55)
    Yes. Yeah. You know, I mean, if I really work hard and think about it, I can figure out what day it is, but it takes a while generally to get the month.

    The day of the month isn’t quite as difficult anymore, but at the beginning I had trouble with the whole thing.

    (04:11)
    I hear you man, I totally hear you. I reckon there’s been a ton of people that relate to what you’re saying. ⁓ Tell me, day like before stroke? What’d you get up to? What type of things did you involve yourself with?

    Brandon (04:23)
    Well, ⁓ you know, I was, I was really involved in, ⁓ production of music festivals and, ⁓ doing that kind of work. ⁓ I’ve always kind of freelanced. Well, you know, I actually, ⁓ left traditional life in 2000 and ⁓ January 1st of 2012 and started traveling and, you know, living out of an RV and whatnot. Before that, I was in the oil field.

    I’ve worked as an MWD specialist on a drilling rig, which means that I used to ⁓ take down all the information about where the actual drill bit was underground and send that off to all the geologists and everybody else so they can make sure that the well was going in the right direction. And, ⁓ you know, I just really didn’t feel happy in life, man. So I decided to take off and see the states out of my RV. And that started about 10 years of travel. And then

    In 2019 I bought some property and started to kind of slowly come off the road and started to be on my property more often but you know it just yeah I don’t know man my life has been a lot of different transitions one thing to another I move around a lot in life.

    (05:25)
    you

    Yeah, so the RV was kind of just exploring seeing the country Doing that type of thing or was it going somewhere with a purpose say to get work or to? Hang out there for a little while. What was that all about?

    Brandon (05:57)
    A little bit of all of it. A little bit of all of it. I’ve always been able to find work where I go, you know, doing different things. But I kind of fell into music festival work, like setting up and tearing down for music festivals and building art installations, doing like mandalas out of trash and stuff like that. And just kind of always did kind of the artist thing, I guess you could say.

    Even before, while I was still in the oil field doing the traditional life thing, I was always very art motivated.

    (06:30)
    Yeah, when you talk about traditional life, you’re talking about nine to five kind of routine and working for the man type of thing. Is that what you mean by traditional life?

    Brandon (06:43)
    Yes, except mine was a little bit different. My work in the oil field involved me being on site on the drilling rig for up to six weeks sometimes. So it wasn’t really nine to five. I would stay gone for a lot more than that. But then when I would go home, I’d be off for three weeks, a month. So yeah, just ⁓ doing that.

    (07:07)
    Where were these oil rigs? Were they in the middle of a desert? Were they in the ocean?

    Brandon (07:13)
    No, they were all onshore and I worked a lot in like Pennsylvania, but also a lot in Texas ⁓ Just you know anywhere where they were doing natural gas drilling

    (07:27)
    And is that a remote kind of existence in that if you’re on the rig for six weeks, are you getting off it? Are you going into town? Are you doing any of that stuff?

    Brandon (07:38)
    Usually the rigs are within an hour of some type of small town usually a Walmart that type of thing So I would go and get groceries a couple of times a week You know me and the other guys would go out and get you know dinner times and whatnot but ⁓ but yeah, basically just sitting in a little trailer a directional trailer is what they called it because it was me and ⁓ Two two other three other guys two more ⁓

    directional drillers and then one other MWD hand which is what I was and so there was a night shift and a day shift of two guys each.

    (08:16)
    12 hour shifts.

    Brandon (08:17)
    Yes.

    (08:18)
    Dude, hard work.

    Brandon (08:21)
    Yeah, I mean on paper it was hard work. In real life, I mean there were those really problematic jobs where you know everything went wrong but in most cases it was just you know taking a bunch of measurements on the computer whenever they would add another link of pipe to the drilling string and drill down further so every time they would add another length of pipe I would have to take more measurements.

    (08:47)
    I hear you. So not physical, but still mental. And you’ve to be on the go for a long amount of time.

    Brandon (08:56)
    Right, but yeah, I mean it did when I would have to go up on the rig floor to like change the tool out or to put something You know together or what not so there was a little bit of that but still not as physical as like a traditional drilling rig roughneck

    (09:04)
    Uh-huh.

    I hear you. Yeah. Everyone’s seen those videos on YouTube with those guys getting covered in that sludge and working at breakneck speeds so that they can make sure that they put the next piece on.

    Brandon (09:24)
    Yeah, yeah, no, I, you know, and I mean, I wore my share of that mud, but not near as much as a floor hand would.

    (09:34)
    I hear, I feel like you’re, ⁓ you’re toning it down and you’re making it sound a lot more ⁓ pleasant than what it might be. But I appreciate that, man. like the way you talk about things. I couldn’t imagine myself doing that, that level of physical labor. Maybe I’m just a bit too soft myself.

    Brandon (09:54)
    Yeah, no, I don’t know, man. I consider myself soft in a lot of ways, too, man. You know, it’s just, we’re all different in our softness.

    (10:02)
    yeah. ⁓ tell me a little bit about, ⁓ your stroke, man. Like what was that particular week? Like the day? Like how did the lead up happen?

    Bill Gasiamis (10:12)
    Let’s pause for a moment. If you’re listening to this and thinking, I wish someone had explained this part to me earlier. You’re not alone. One of the hardest parts of stroke recovery isn’t the hospital. It’s what comes after when the appointments slow down, the support fades and you’re left trying to make sense of what your life looks like now. That’s exactly why I wrote the unexpected way that a stroke became the best thing that happened. It’s not a medical book. It’s a recovery companion built from real experiences.

    real mistakes and real breakthroughs that stroke survivors discovered along the way. If you want something that helps you think differently about recovery and reminds you that you’re not broken, you can find the book at recoveryafterstroke.com/book. Let’s get back to the conversation with Brandon.

    Craniotomy Stroke Recovery Journey

    Brandon (10:59)
    Okay, so I was helping a friend in Northern California to clean a property that was owned by an artist who had died and we went on to his 10 acre property and we’re just cleaning up for his family. But he had like all kinds of art stuff everywhere and so it was kind of right up my alley and ⁓

    We were just trying to get the property clean for these people and we decided to take off and go and do a little bit of rock climbing. so we took off early one morning and drove to a town called Willets, California where there’s good rock climbing and we spent the day doing rock climbing which was a fairly new thing to me but the guys that I was with were very experienced lifelong climbers.

    And so I was kind of the new guy and they were showing me the ropes and we climbed all day. I did really well, I thought, and didn’t really notice anything. No problems. ⁓ Got back in the car. We’re headed back to the house about an hour away, a friend’s house where we were all going to stay the night. And on the way there, I

    noticed that I was really thirsty and I stopped and I got two 40 ounce bottles of Gatorade and I drank them both immediately and like just downed them and still didn’t notice anything was a problem was in the truck by myself with my two dogs and eventually I guess about an hour later we got to the house

    And I went inside to hang out with everybody. And one of my friends said that my arm wasn’t working well. I didn’t notice it at all, but he said that my arm wasn’t working very well. ⁓ so ⁓ I just kind of went on with my life. a couple of, I guess about an hour later, I decided that I was really tired.

    and I could not quench my thirst so I just grabbed a whole bunch of water and went out to my truck and I was gonna go and lay down and sleep in the back of my truck for the night and ⁓ when I got out to my truck ⁓ by this time my friend had said that my arm was working fine again and he noticed that I he felt like I had gotten over whatever it was and so I went out to my truck got into the driver’s seat of the truck

    And that’s about the last of my recollection that night.

    next morning when I wasn’t up making breakfast before everyone else, they realized there was a problem because I was usually the first one up making breakfast and doing all that stuff and I wasn’t there. So my friend came out to my truck to check on me and I was still in the driver’s seat with my head on the steering wheel. I never even fell over.

    (14:05)
    Hmm.

    Brandon (14:17)
    And so this is 12 hours later. And so ⁓ he tried to wake me up and I was only halfway coherent and I couldn’t make either of my arms work and only one of my legs could I get any response from. So he realized there was a problem immediately, pushed me over into the passenger side of the truck

    got in and drove me an hour to the closest hospital, just a small little regional hospital. And they were pretty quick about realizing that I was having a stroke. And they didn’t even, I don’t even remember them putting me in a room. They brought me straight up to the roof and put me in a helicopter and helicopter and helicoptered me to UC Davis hospital in Sacramento.

    (14:59)
    Wow Wow

    Brandon (15:15)
    And I got into the hospital and within, I think about an hour and a half, they had called my mom and my brothers who were all in Louisiana at the time. And they had gotten permission to start treatment and they brought me into the surgery. at first they just

    (15:25)
    The The following is a video of the first year of

    Brandon (15:45)
    removed

    a three millimeter blood clot from my main artery on the right side. But then the swelling was so bad because I had been bleeding into my brain for 12 hours overnight that they had to go ahead and do ⁓ a, what do you call it? The craniotomy. Yeah, craniotomy. And so they took this whole side. It was a big craniotomy.

    (16:05)
    Craniotomy

    Brandon (16:12)
    They took this whole side, everything to the center of my forehead, above my eye, down to just above my ear, front to back. ⁓ They took that whole section of my skull out, put it in the freezer so that my brain had room. then I spent 10 days in intensive care recovering from that. And then they moved me to a rehab hospital where I spent four weeks.

    And yeah, so in that rehab hospital, yeah, immediately after the surgery, I couldn’t walk and I had pretty much no function on my left side, know, arm or leg. But by the time I got to the rehab hospital, I had gotten some control back, but I still couldn’t walk. ⁓

    (16:44)
    Wow, man.

    Adjusting to Life Post-Stroke

    Brandon (17:10)
    And that about a week after I was in the rehab hospital is when I started to walk again without assistance. So that came back fairly quickly, but I still had really bad foot drop and my left arm wasn’t working. It was hanging, you know? And then, so they kept me in there, ⁓ you know, going through, I guess, regular rehab.

    (17:24)
    Thank

    Yep.

    Brandon (17:36)
    They the series of lights on the ground in front of me and I’d have to like run around and touch the different lights as they would activate and you know, I don’t know I mean, I guess it’s the same type of rehab stuff that most people go through and ⁓

    (17:51)
    Yeah, it’s probably

    similar. Mate, ⁓ this is what I really want to know is what’s it like to experience having half of your skull removed? Can you somehow paint a picture of what it’s like to go through that process and how aware were you of it? Because you just had a stroke, right? So you’re in a bit of a challenged sort of healthy health state.

    Brandon (18:14)
    Right.

    No.

    Yes.

    ⁓ well, I think that that deliriousness was actually kind of helpful. First of all, I have not experienced any pain through the entire process. From the stroke, no pain from the craniotomy, no pain through rehab. I have not experienced any pain through this entire experience.

    None whatsoever. Now the doctors say that I might have lost some of that ability to sense it But you know, I mean whatever it took I Really, you know, I didn’t you know, whatever the reason was The effect of it was that I had a pretty fame pain free experience, you know

    (19:07)
    and you’re like looking in the mirror and seeing yourself and you know, like experiencing your head and how do you kind of deal with all of that?

    Brandon (19:21)
    Well, ⁓ I couldn’t feel a whole lot. I still have a lot of, or not so very much sensation on my scalp on that side. So, you know, but as far as looking in the mirror, that was kind of interesting. You know, it took a little while to get used to it, you know, and, it, ⁓ was definitely not something that I would recommend.

    Anybody else going through if they don’t have to you know, but ⁓ But I don’t know man. I mean, I’ve always tried to stay pretty positive about things and so, you know, I just Kept going, you know, I mean they shaved my head. I had dreadlocks for a very long time I had dreadlocks and And so this is all the hair that I’ve gotten since they put my skull back together, which was January or it’s actually

    It’ll be one year tomorrow since they put my skull back together. So, ⁓ my hair is coming back, which I’m really grateful for. About this time next year, I’m gonna start trying to put my dreadlocks back in. you know, but yeah, it’s, I don’t know, man. It’s really been an interesting ride. ⁓ You know, ⁓ learned a lot more about stroke than I ever thought I would need to.

    You know, I mean, I’m 48 right now. I was 46 when the stroke happened. So it wasn’t even on my radar, man. I wasn’t paying any attention at all. I didn’t know the anagrams or whatever. I didn’t know the symptoms of stroke. So I just kind of rolled with the punches as they came. I took it one step at a time. And that’s kind of the way it’s been with my recovery too.

    is I try to address one problem at a time so I don’t overwhelm myself. So after I started to get my leg back, I started to shift my influence to my shoulder and my arm. And at this point, I’ve got almost full range of motion back to the left side. I still can’t write. ⁓ Well, actually, technically, I can make my whole alphabet and all of my numbers with

    (21:16)
    Yep.

    Brandon (21:37)
    both hands at this point. trained myself to use the other hand and then about the time I was able to get that back the other hand started to come back online. So now I can do all that with both hands but words I’m word blind and numbers and letters don’t make a lot of sense to me. So even though I can make the shapes I have a lot of trouble associating the sounds of certain letters and the functions.

    of different numbers and letters, you know? That’s where a lot of my trouble is now, and that’s where most of my work is at the moment.

    (22:14)
    I hear you. So you sound like you’re very cool, and collected. How do you remain positive when you wake up from a stroke? You’re missing half of your skull. Your body doesn’t work on half the side. Is it your default? Do you have to work on that? Have you been working on being positive over?

    the decades that you’ve been on the planet, give us a bit of an insight into that part of you.

    Brandon (22:47)
    Okay, so yeah, I think I’ve always maintained a pretty positive demeanor, you know, I mean I’ve gone through some rough stuff in life, but I’ve just kind of kept going, you know, rolling with the punches. So I really don’t think that I have had much difficulty remaining positive through it. You know, there’s ⁓ definitely, you know, ⁓ days that I don’t feel as good as other days, you know, and you know, I definitely have… ⁓

    things that I have to work through. have to, you know, I have to make an effort to remain positive, you know, at times. But my default has always been to be a pretty positive and happy person. So I think that that was really the majority of it is that I’ve always even in the light of extreme adversity, I’ve always been able to remain positive. You know, ⁓ so that that’s always been, you know, key even before the stroke. But

    (23:39)
    Yeah.

    Brandon (23:46)
    Yeah, I mean definitely waking up and realizing that half of my body didn’t work anymore was not fun, but it’s what I was given. I couldn’t change it, you know, only time and work was gonna change it. So I just kinda accepted it, you know, I mean, ⁓ one of the biggest things that helped me out was by the time I got out of surgery and started to get coherent,

    My mom and my brother had already flown from Louisiana to be with me in California at the hospital. And that was huge just to know that my family was there. And they stayed with me for the whole time that I was ⁓ in the hospital for the 10 days. And then when I went to the rehab hospital, they went home. ⁓ But yeah, so that was ⁓ just really, that was a big part of it too, you know, I mean.

    My mom and my brothers are pretty much the most important people in my life. Of course, my daughter as well. yeah, so, you know, to have them all there and just to have that support and have them there to help me because when I first came out, from the time I came out of surgery, I could still speak very clearly. So I did not know what I was saying.

    (24:56)
    Mm-hmm.

    Brandon (25:15)
    Nobody could tell like I wasn’t making a lot of sense, but I never lost my voice They think that that’s because of my left-handedness Because I’m left-handed I store things like that differently in my brain So because of that I was able to keep my speech even though I cannot write I can’t do you know I mean I can write my letters, but if I try to

    (25:32)
    Okay.

    Brandon (25:44)
    make a word this was yesterday

    (25:48)
    Aha! Lux-

    Brandon (25:50)
    But I can,

    yeah, it’s just scribble. It’s just scribble. Yeah, but, you know, if I try to like draw a letter or a number, I can do it, but I have trouble assigning it to its value.

    (25:53)
    Yeah.

    Understood. So before that, were quite capable of stringing sentences together, writing things down, doing all that kind of stuff. So that’s a very big contrast.

    Brandon (26:14)
    I have always been known.

    Huge contrast.

    (26:22)
    Is it frustrating that you can’t write in the way that you did before? it matter?

    Brandon (26:27)
    Yes, yes, I used to write all the time, know, poetry, things like that. I’ve always been considered, you know, a good writer, a good orator, public speaker, you know, that kind of thing was a big part of my life, for my whole life. And so to go from that to not being able to write a sentence on a piece of paper or even a word is really a big change for me.

    You know, and I mean I do use my phone for voice to text. If I wouldn’t have had voice to text, I really don’t know where I would be right now.

    (27:06)
    Is that how you communicate most things?

    Brandon (27:09)
    Yes, absolutely. it’s- if I can’t say it, like speak it, I have to use voice to text. I can’t spell- I can’t- I can’t spell my own name half the time.

    (27:17)
    Dude, I love that.

    Yeah, I hear you. I love voice to text. So I was told by a friend of mine about a product called Whisper Flow. I’m gonna have links in the show notes and in the description on the YouTube video, right? And it’s spelled W-I-S-P-R-F-L-O-W, Whisper Flow. And what you do is you program one key on your keyboard. And then what you do is you press that key and it activates

    Brandon (27:36)
    Yes.

    (27:52)
    the app and then you speak and it types beautifully. It types at all. And I’m a terrible like typist. I could never be one of those really quick secretary kind of people and take notes because I’m not fast enough, but it can type for me by speaking like beyond 99 words per minute, which I think is crazy fast.

    Living Independently After Stroke

    And I do it because it just saves a heck of a lot of time, me looking down at the keyboard and all that kind of stuff. My left hand does work, but I can type with it, but often my left hand, you know, we’ll miss the key and I’ve got to go back and do corrections and all that kind of stuff. So voice to text, this comes such a long way and everyone needs to know, especially if they’ve had a stroke and one of their limbs is affected, especially if it’s their…

    they’re riding limb or if they have a challenge like you, everyone needs to know about the fact that technology can really solve that problem. I’m pretty sure, I know this sounds like an ad for Whisper Flow, it probably is, but I’m not getting paid for it. I think they cost, it costs about hundred bucks a year to have this ⁓ service. So it’s so affordable and it does everything for you just at the touch of one button on your computer.

    And for some people you can also use it on your phone. But I think phones are pretty awesome at doing voice to text already. So you don’t really need ⁓ it for the phone, but you definitely need to check it out for the computer.

    Brandon (29:27)
    Okay, yeah, well, you know, I pretty much have my phone. I don’t have a computer, so… But, ⁓ it does sound like an amazing product, and I am looking to get myself a computer because I really, ⁓ like, I haven’t touched a keyboard since my stroke. So, it would be nice to get myself a laptop with a keyboard so that I could start working on trying to see how that interface works for me.

    (29:33)
    Yeah.

    Yeah. How was the transition out of hospital and rehab back to your place? and how long after the initial strike did you end up back at home?

    Brandon (30:04)
    Okay, so, when I, I left the hospital after, or I’m sorry, after 10 days in intensive care, they put me in the rehab hospital and I was there for four weeks. After that, they still didn’t think that I was ready to live by myself yet. So I had to, ⁓ rent a house in Joshua tree from a friend of mine who lived on the property in another house.

    And so I had a whole house to myself still which allowed me to keep my independence. But I still had somebody close enough to holler if I needed anything. And so I kind of, you know, baby stepped by renting a house, you know, for a while. And, And I have property in Northern Arizona where I normally would take my off time when I wasn’t traveling. But, ⁓

    But, ⁓ because of the stroke, I wasn’t able to go back to that property for quite a while. And only about Christmas of last year did I start to be able to spend some more time on my property, you know. But at this point, I’m still renting the house in Joshua Tree and starting ⁓ to branch out a little bit more, do a little bit more traveling, things like that. Now with that said…

    I have been ever since the stroke happened about two months after the stroke I went back to my first music festival. So I didn’t have half of my skull. I had to wear a helmet for six months. And so here I am at a music festival with all of my friends and I’m in a helmet with half of my skull missing. But I still was able to be there and then ⁓

    you know, be a part of the festival. So I got back to the activity that I enjoyed pretty fast.

    (32:07)
    What genre of music?

    Brandon (32:09)
    Well, it’s actually the Joshua Tree Music Festival in particular, which is the only music festival that I’m really involved with anymore. ⁓ They do world music. We get artists from all over the world in. And that’s kind of one of the reasons I’ve continued to be a part of this music festival and really haven’t been that big of a part of the other ones is because I’m always learning about new music when I go there. And that’s a big important part of it to me.

    (32:40)
    Understood. So your transition back to living alone took a little bit of time. You’re renting a place. Are you alone there? Are you living with anyone else? How is the home set up?

    Brandon (32:55)
    I have a home all to myself but there is a shared home on the other or on the property that a friend of mine lives in and he’s actually the one that I’m renting from so yeah

    (33:09)
    So you have access to support to help to people around you if necessary.

    Brandon (33:15)
    if I need it. also another big part of one of the symptoms of my stroke is that I don’t recognize my own disabilities. I have a lot of trouble with that. So I generally do not ask for help with things, which in a lot of cases has made me a lot stronger and I think been a big part of a speedy recovery. But at the same time, I can put myself in some kind of sketchy situations at times.

    (33:43)
    It’s not, are you sure it’s not just your male ego going, I can do this, I don’t need help.

    Brandon (33:49)
    I mean, I’m sure that that does tie into it, I’m certain. But yeah, that’s one of the things that I’ve struggled with from the beginning. And I didn’t recognize the left side of my body as my own. I thought it was somebody else’s. That wasn’t very long, just for maybe the first couple of weeks. But that was a very interesting sensation, that I felt like there was somebody else there.

    (34:06)
    Wow.

    Yeah, it just feels like it’s my, I kind of describe my left side as if it’s because my star sign is Gemini, right? So now I describe it as being the other twin, like the other part of me, which is me, but not me. And it’s so strange to experience 50 % of my body feeling one way and then 50 % of my body feeling a completely different way, which is

    Brandon (34:25)
    Yeah.

    Facing New Challenges: Aneurysms and Uncertainty

    (34:44)
    the only way I remember and then tying them together, like bringing them together has been a bit of a wild ride, like just getting them to operate together. When they have different needs, my left side has different needs than my right side. And sometimes one side is getting all the love and the other side is missing out. And I’m always conflicted between where do I allocate resources? Who gets…

    how much of my time and effort and who I listen to when one of them’s going, my left side’s going, I’m tired, I’m tired. My right side’s going, the party’s just started. Let’s keep going. Don’t worry about it.

    Brandon (35:25)
    I have to deal with that. Of course, my left gets a lot tighter than my right side, but I don’t know. think I’ve done a pretty good job of giving it that care. And a big part of where I measured my success was getting my shoulder back online and being able to pronate and go above my head. It took months to get my hand over my head. But

    But at this point, you know, I’m pretty much back to physically normal except for the fine motor skills on my right, on my left side. You know.

    (35:59)
    Sounds like things are going really well in really small increments. And if you’re only, what, two years post stroke, sounds like recovery is gonna continue. You’re gonna get smaller, more and more small wins and they’re gonna kinda accumulate and make it pretty significant in some time ahead.

    Brandon (36:17)
    Right.

    It’s a year and a half. So my stroke was on the 4th of November of 2024.

    (36:32)
    Yeah. Do you know in this whole time, did you ever have the…

    like, this is too hard, I don’t want to do this. Why is this happening to me kind of moment? Did you ever have any of that type of negative self talk or thoughts?

    Brandon (36:50)
    no, I mean, I suppose there probably were moments, but I don’t pay a lot of attention to those kinds of moments. You know what I mean? I do kind of even without the stroke, maintain a pretty positive mental attitude, you know, and I think that that’s been one of my biggest blessings through this. ⁓ yeah. So yeah, that’s never really been a good emotion.

    (37:12)
    I

    get a sense that you have those moments, but you don’t spend a lot of time there. Is that right? Is that what you just sort of alluded to that you have those moments, you just don’t give them a lot of time. Therefore they don’t really have the opportunity ⁓ to sort of take up residence. And then you just move on to whatever it is that you’re getting results with or makes you feel better or… ⁓

    supports your project which is ⁓ recovery or overcoming or…

    Brandon (37:48)
    Yes.

    No, I completely agree. ⁓ You know, I mean, speaking of which, four days ago, I got ⁓ a phone call from the doctors. ⁓ They found an aneurysm in my brain. So I have to go and meet with a neurosurgeon on Tuesday to discuss what we’re going to do about a brain aneurysm. So I thought, you know, I was just about back to normal.

    And here I go into another situation. But again, until I know what’s going on, there’s no point in worrying about it, you know? So I’ll know more about it on Tuesday, but until then, I’m not spending a whole lot of time wondering, you know, am I just going to have an aneurysm and collapse tonight? You know?

    (38:36)
    that tends to be my default as well. I was really good as a kid. ⁓ When I was being cheeky and not doing my homework for school, I would go to bed and I would remember, I haven’t done my homework. And then I’d be like, yeah, but you can’t solve that problem now. Now you got to sleep, right? So you got to worry about that in the morning after you’ve had a good night’s sleep and you wake up and then deal with it. And that was a strategy to help me forget about that.

    minor problem, which back then, if you haven’t done your homework as a teenager, that was a big problem. If your teachers found out, if your parents found out, but the idea was that, don’t I just pause all of the overthinking? Why don’t I just pause all of the rumination and all the problems and all that stuff that it could cause for now. And I’ll worry about it when there’s a opportunity to have the resources to do something about it.

    And the classic example was in the morning, I would have an hour before school where I could reach out to one of my friends, take their homework, copy their homework, and then hand in my homework.

    Brandon (39:46)
    Absolutely. Yep, that was very much like me in school.

    (39:51)
    Yeah, not much point worrying about things you can’t change or control in the moment. Just pause it, deal with it later. I had a similar situation with my bleed in my brain, because I had a number of different bleeds and it was kind of in the back of my mind a little bit. What if it happens again? But it actually never stopped me from going about life from bleed one through to bleed two.

    was only six weeks, but like through blade two to blade three, it was about a year and a half. But I got so much done. I was, we were just going about life. was struggling with memory and all different types of deficits because of the blood clot that was in my head. But I never once kind of thought about what if something goes wrong, unless I was traveling.

    to another country, because we did go to the United States when I was about almost a year after the first and second bleed, we went to the United States. And then I did worry about it from a practical sense. It’s like, if I have a bleed in Australia, I’m near my hospital and then they can take over from where they left off previously and healthcare is paid for here. So there was no issue.

    But if I’m overseas and something goes wrong, I’m far away from home, we got to have the expensive insurance policy. Cause if something goes, I want to be totally covered when I’m in the United States, we don’t know the system. don’t know all these things. So that was a practical worry that I had, but I didn’t worry about my health and wellbeing. Do you know? I worried about the practicality of having another blade in the airplane because then I’m in the middle of the ocean.

    over halfway between Australia and the United States. And that’s eight hours one way or another or something. And I thought about that, but I didn’t think about how I would be personally ⁓ negatively impacted by the medical issue. I just thought about the, do we get help as quickly as possible if something were to happen? So I know a lot of people have a stroke and they,

    Brandon (41:55)
    Right.

    Support Systems: Finding Community After Stroke

    (42:18)
    ⁓ They overthink about what if it happens again and they’re constantly kind of got that on their mind, but I was dealing with just the moments that made me feel like perhaps I should do something about this headache that I’m getting. I dealt with things as they appeared, as they turned up, I didn’t try to plan ahead and solve every problem before it happened.

    Brandon (42:24)
    Yeah.

    Yes, I agree. I’m very much the same way. You see, before my stroke, I didn’t have medical insurance. I hadn’t seen a doctor since my early 20s. just, I was, I was, I had always been extremely healthy. You know, I’ve always been very physically active, you know, and, so it just, I never really, I never really ⁓ went out and looked for medical. I just didn’t need it, you know? And so,

    When the stroke happened, I was very lucky to get put on California’s healthcare plan. And they’ve taken care of all of my medical bills. ⁓ You know, I’ve never pulled a single dollar out of my pocket for all the rehab, all the doctors since. And I mean, I have doctors still once every week, two weeks at the most, doctor visits, you know? And so I’m extremely fortunate.

    that it happened to me where I was, you know, because not all states here are like that, but California is extremely good. So, you know, I’m really grateful that it worked out the way it has because it could have been a whole different situation, man.

    (44:00)
    I have heard some horror stories about medical insurance for people who are not covered, have a stroke and then they leave hospital with like a $150,000 bill or something. Is that a thing?

    Brandon (44:13)
    Yes, it really is. I mean, I was extremely fortunate. By the time I got out of that first 10 days with the helicopter ride and everything else, I was close to $2 million in bills.

    (44:25)
    Dude, that’s mental.

    Brandon (44:26)
    Yeah. And, ⁓

    yeah, I mean, it just doesn’t really, I mean, you know, I mean, I’m not a big fan of, the way that the medical system works money wise. think it’s all just paper or fake money, just fake numbers, you know, but yeah, I don’t know. I just, ⁓ I was extremely fortunate that it all happened the way that it did and that California is so good and they really do take care of their citizens, you know, so.

    (44:54)
    Yeah, I love that.

    Brandon (44:55)
    Yeah, very

    fortunate.

    (44:57)
    You know, in your recovery, did you have somebody that you kind of leaned on for support that was a confident, ⁓ that was like a mentor or did you have somebody like that in your life that was really helpful in your recovery?

    Brandon (45:15)
    Actually in about the year before my stroke I lost the three gentlemen that I had always considered my mentors, older guys that I’ve known for years. They all three passed away the year before my stroke. So I really kind of felt on my own. You know, I have a lot of friends, you know, but ⁓ but after my stroke I really don’t have the brain space for like Facebook or anything like that.

    So I really, closed down my very active Facebook account and when I did that, I lost so many people that would have been my support because I just, they weren’t there, you know, in real life. They’re only there on the computer, you know? And so, but luckily, you know, I’m a part of the community in Joshua Tree. So I had a lot of support from people there and… ⁓

    Then I have probably four or five other friends that are scattered around the United States that I keep in touch with pretty closely. But I went down from talking to hundreds of people a month and all of that on the internet to really a very small closed social circle, you know? And then in addition to that, surprisingly,

    people that I’ve known for years just are not very good at accepting the differences in who I am as a person since the stroke, you know? And so, you know, I hate to say it, but a lot of friendships have kind of gotten a lot more distant since the stroke. you know, it’s just, I mean, it is what it is. You know, people have to do what they feel is right for themselves, you know? But yeah, I really… ⁓

    Identity Shift: Life Changes Post-Stroke

    (47:06)
    Yeah.

    Brandon (47:07)
    I don’t have a very large support network. You know, I just basically kind of take care of a lot of it myself. You know, I mean, I did two and a half months of outpatient rehab with a occupational therapist. And what’s the other one? Occupational and physical therapy.

    (47:33)
    Mm-hmm.

    Brandon (47:33)
    So I

    did occupational and physical therapy for about two and a half months after I got out of the hospital. And that was all really good and helpful. And ⁓ I’m really grateful for those therapists that worked with me. And they helped me get ⁓ basically back to a normal cadence because I was having trouble putting one foot in front of the other. And they really helped me work on my cadence and getting my walk back to fairly normal. ⁓ My arm.

    has been mostly me. It has never been able to be rushed. It takes its own time. So even with the physical therapy, my hand coming back, it works at its own pace. That was never really influenced that much by physical therapy. And then my actual use of my hand, I was balled up. I was curled up and balled up to the wrist.

    after the stroke and eventually I got to where I could hold it out flat and I still tremor a lot there but it’s a lot better than it was and but yeah all of that had to come back at its own pace the physical therapy and stuff was helpful for a lot of other aspects of my recovery but that was all just taking its own time and coming back as I guess as it did my brain learn to re-communicate

    (48:58)
    Yeah, it sounds, it sounds like you’re kind of really well made up somehow, like you picked up the skills early on in your life to be able to deal with this situation. The way that you do is just amazing. Like it’s

    seems like it’s second nature, the way that you go about approaching the problems, the challenges, the difficulties, know, the missing half your skull, all that thing. It just seems really innate that you have that within you. you, people are listening and going, you know, that’s not me or I didn’t experience that or I’m overthinking things. Do you think that’s the way that you’re approaching things is teachable, learnable? Can people change the way

    that they’re going about ⁓ relating to their stroke or dealing with their stroke or managing it.

    Brandon (49:53)
    ⁓ you know, I think that that you’re going to find that a lot of people, can be taught and a lot of people, can’t be taught. You know, some people’s nature just is not going to be able to handle that. But other people, you know, I think that you can go through very real processes to gain, ⁓ knowledge base, you know, to be able to start working with it. You see another big aspect of my recovery.

    is that I immediately after my stroke and getting out of the hospital moved eight hours away from UC Davis Hospital where my original care providers were. So I had to go through a whole new medical plan, a whole new set of doctors and everything else. And that changed on me like three times over the first six months. So I really couldn’t rely on the doctors for support either.

    because they were changing so often I would just meet one and the next thing I would know I would have a new doctor coming in or a new healthcare plan and so it took about six months for me to start seeing the same healthcare providers routinely so I went to YouTube University man I found you I found several other people that had these just these huge amounts of information

    you know, on how to handle my own recovery. So I took a lot of my own recovery into my own hands. And actually, ⁓ a week ago, I was talking to my neurologist, who is a really amazing lady, and, you know, and had to tell her pretty much that same story that, you know, I couldn’t leave it up to the doctors to fix me. I had to take care of myself.

    because of my situation and switching insurance and everything else that I went through, there was just not that much option. ⁓ so, you know, and she was like, I wish that all of my patients had that kind of an outlook. You cannot rely on the medical system to fix you. You know, we were talking about what can help people. I think that’s a really big thing that could help a lot of people is

    to realize that you have to take care of your health care decisions. You know, they found a PFO in my heart, a ⁓ Framon Parabot.

    (52:24)
    A patent for

    Ramen Ovali. Hole in your heart.

    Brandon (52:28)
    Yes,

    yeah, they found that and they wanted to fix it and I was like, you know, I’m 47 years old. This is a one-time thing. So I opted to have a loop recorder installed, a loop recorder to measure my heart rhythm and everything and send messages to the doctors at nights about my heart. So that because I thought that was a little bit less invasive.

    For my age, the last thing I want is for later in life, my body to start having problems with an implant that’s in my heart. So I decided not to go with that and to go with the less invasive loop recorder, which is still implanted under the skin in my chest, but it doesn’t affect my heart.

    (53:08)
    Thank you.

    Brandon (53:21)
    It just sends the information

    about my heart rhythm to the doctors so that they can keep track.

    (53:26)
    and it can be easily

    accessed and removed.

    Brandon (53:30)
    Exactly, exactly. So, you know, I mean, if I have another stroke or if I find through the little device that I’m having trouble with that PFO, you know, then I’ll get the PFO closure done. But until then, I didn’t want to just jump straight to that, you know, three months out of my out of my stroke. You know, I want to make sure that that’s the problem.

    because they did pull a 3mm blood clot out of my brain. So there’s a good chance that that went through the PFO and into my brain. But I was also way outside of my normal activity range trying to rock climb the day before. So there’s just, there are too many variables about the experience for me to just want to go and have something installed in my heart permanently, you know?

    (54:28)
    I hear you. What about the aneurysm? Where is that? What’s the long-term kind of approach to that?

    Brandon (54:35)
    Don’t know yet. I do not know anything about it. I’ll find out more information on Tuesday They said it’s not it’s not in the same part of my brain that my stroke was So that’s a good thing and there’s a good chance that it may have been there for a long time before the stroke So we just don’t know I don’t know anything about it So that I’m gonna go and meet with this neurosurgeon and decide what we’re gonna do about it

    (54:42)
    that’s right.

    Brandon (55:03)
    I think the most likely option, as long as it’s not big, is that they just wait and they monitor it. But there’s also a process where they coil it. They put a coil of platinum into it and pack it off so that it can’t become a problem later. And then the third scenario is that they take another piece of my skull off and go in and actually put a clip on it.

    to stop the blood from going into it. So I may actually have to have my skull open back up again. But, again, there’s no point in thinking about it now. I’ll think about it after Tuesday when I figure out where this thing is, what size it is, and all the details of it, you know?

    (55:46)
    Yeah.

    I love it. I love it. I love that man. That’s a great way to approach it. Also, ⁓ I love your comment about YouTube University. I love the fact that people find my podcast sometimes when they’re in hospital because clearly they realize I need to ⁓ learn more about this, understand it and ⁓ straight away they’ve got answers because of YouTube. it’s such a great service. It’s free. If you don’t want to pay for a paid service and all you got to do is put up with

    ads that you can skip through most of the time. So I think that’s brilliant. ⁓ What about your identity, man? People have a lot of kind of ⁓ examples of how they have a shift in their identity, how they perceive themselves, how they fit into the world. Did you feel like you have a shift in your identity or the way that you fit into the world? What’s that like for you?

    Brandon (56:46)
    Well, I mean, I definitely do feel like there was a big shift. Now at the core, I feel like the same person. know, mentally, I still feel like I know who I am, but it definitely has shifted my priorities in life a lot. ⁓ I did not raise my daughter and I developed a much closer relationship to her since the stroke.

    and we’ve been spending more time together and just really working on our relationship together. She’s 28 years old. So, you know, that has really been an amazing aspect of my stroke recovery is that I’m closer with my daughter than I ever was. But yeah, I mean, you know, I do things a lot differently. I was a heavy smoker, a heavy drinker, and a heavy marijuana user.

    I don’t smoke marijuana, don’t smoke cigarettes, and I don’t drink alcohol anymore. So huge change in my lifestyle as well. ⁓ But you know, I just I’m not as much of a hurry as I used to. I was always accused of my mind working on too many levels at one time, you know, and had too much on my plate, too much going on in my brain all the time. Now.

    My brain doesn’t keep up as well. So I struggle to stay on one subject, much less juggle multiple things in my brain. So it’s really kind of slowed down my whole mental process. But I think that again, that’s in a good way. I think that ⁓ I needed to slow down a little bit in a lot of ways.

    Lessons Learned: Insights from the Journey

    (58:31)
    I hear you. With the alcohol, marijuana and the smoking. So you might’ve been doing that for decades, I imagine, smoking, drinking.

    Brandon (58:43)
    Yes.

    (58:44)
    how do you experience your body differently now that it doesn’t have those substances in it anymore? Like, cause that’s a mass, that’s probably one of the biggest shifts your consumption of, we’ll call them, I don’t know, like harmful ⁓ things, you know, like how, so how do you relate to yourself differently now that those things are not necessary?

    Brandon (59:12)
    You know, I never really had like an addictive aspect. So I really don’t, I don’t feel like, ⁓ I mean, I don’t feel like it’s changed me a whole lot. I just had to take the daily habits out. But after spending a month in the hospital, all of the physical wants, all of the physical aspects of it were already taken care of, you know? So I just had to kind of maintain and not go back to old habits.

    So really, I mean, I don’t feel like it was that big of a difference. But now physically, I’ve always been an extremely skinny person. You know, I’m six foot one and I’ve always weighed 135 to 145. Now I weigh 165. So I did put on some weight after stopping all that. But other than that, really don’t notice a lot of

    ⁓ physical differences. Now, I have not coughed since my stroke. I used to wake myself up at night coughing, but for some reason, like literally when I had the stroke, I have not coughed since. Now I clear my throat a lot more and I have a lot of, we’re trying to figure out why, but I have a lot of problems with my sinuses.

    and stuff like that all on the side that I my injury was on this side but on the side the mental side like where it’s all mental stuff that changed the you know all of that I have problems with my sinuses and drainage and things like that so right now I’m seeing an ear nose and throat specialist and we just did a cat scan of my sinuses so I’ll see on the 13th of this next month

    I’ll get more information on about what’s going on there. ⁓ really, if that’s all I have to deal with is a one-sided sinus infection, I’m okay with that, you know?

    (1:01:23)
    Brandon, you’re all over it, man. I love your approach. It’s ⁓ refreshing to hear somebody who’s just so all over getting to the bottom of things rather than kind of just letting them kind of fester, which kind of leads me to my next question is you seem to have gained a lot of learning and growth from all of this. So what… ⁓

    What are some of the insights that you gained from this experience that you didn’t expect?

    Brandon (1:01:54)
    ⁓ No, I’m really not sure, man. I’m really not sure. I mean, again, I feel like pretty much going back to the same person. I mean, I have, I think, a little bit more respect for the human lifespan. You know, I was one of those people that always felt like, since I’ve never died, I can’t tell you that I’m going to die. Even though everybody else on the planet has to die, I never necessarily felt like that. I definitely feel mortal now, you know?

    I used to tell everybody that I still felt 25, but as soon as I had my stroke, felt 48. I felt every bit of my age. So it kind of cured me of that. You know, I pay a lot more attention to like, you know, things like, setting up my daughter for the future, you know, and like,

    Purchasing property for her and things like that to make sure that she’s gonna be taken care of when I’m not here anymore Things that I never paid attention to beforehand, you know, I always just lived in the moment Really didn’t care about the rest But now I’m more prone to put the work into my vehicle before it breaks down Instead of just waiting for it to be on the side of the road to fix it You know, I just I I think that I handle my life

    responsibilities more like a grown up than I used to, you know, but ⁓ but really, I don’t know, I’d say overall though, it’s still really difficult question to answer, man. I don’t I don’t feel like I live a lot differently. I feel like I’m still the same person, you know.

    (1:03:35)
    You nailed it, man. You answered it beautifully, especially the part about mortality. That’s a hap that happened to me. I realized at 37 that, ⁓ I actually might not be around in 12 months, six months, three months. So who knows like tomorrow. And that made me pay attention to my relationships and make sure that they were mostly mended healed. Reach. I reached out to people who I needed to reach out to. cut off people who I didn’t need to continue connecting with.

    Brandon (1:03:51)
    Right?

    (1:04:05)
    You know, like I realized that this, I’ve got to attend, attend to certain things that I hadn’t been attending to because if, ⁓ if the shit hit the fan, if things go really ugly, then I wouldn’t be able to attend to those things. And I, now that I had the ability to do it, was my responsibility to do that.

    Brandon (1:04:28)
    Absolutely, absolutely. I completely agree. I did the same thing. I cleared out a lot of the people that really weren’t being, you know, or that weren’t adding benefit to my life and causing problems in my life. I cleared all of that out. I started to focus more on the core group of people that were a big part of my life and, you know, my recovery and just, you know, who I am as a person. And just, you know, it really made me

    take a better look at the life that I had created for myself and and ⁓ and Just take care of the things that I should be taking care of and don’t pay as much attention to the things that weren’t serving me

    (1:05:12)
    Yeah, it’s a great way to continue moving forward. Your daughter, does she live nearby or does she live in another state?

    Brandon (1:05:21)
    She lives in another state. She lives in Alabama right now, but we’re starting to consider her coming out here to Arizona. Her and her boyfriend have lived there for several years, but the only reason she was living there is because her grandparents lived there on her maternal side, and she was very close to them for her whole life. But they passed, both of them, over the last several years. And, you know, she enjoys her work. She enjoys her friend group.

    But she also feels like she might need to go and explore a little bit more and move out of her comfort zone. So she might be a little bit closer sooner. Her and her boyfriend might actually move out here. we’ll just, know, only time will tell, but it’s just, it’s a fun thought, you know?

    (1:06:08)
    Yeah, I hear you. So we’ve shared a whole bunch of amazing things on this episode right now. The last question I want to ask you is there are people watching and listening that had either been listening for a little bit of time. They’ve just started their stroke recovery or they’re on a different part of their journey of recovery. Do you have like a little bit of, I don’t know, a wisdom, something that you’d like to kind of leave them with, with regards to

    this whole journey, you maybe your greatest lesson. don’t know. Like, is this something that you would like to say to people who are watching and listening who might be going through this journey as well?

    Brandon (1:06:50)
    ⁓ you know, keep pushing, keep pushing because seriously, at a year, I still didn’t feel as good as I do now. You know, it’s six months, all those times, all the measure points that the doctors give you, all of the timeframes that they tell you, don’t take any of it to heart. Every stroke is different. Everyone’s recovery is different. If you feel like it’s rushing you,

    Slow down. If you feel like it’s going too slow, speed up. know, but take it in your own hands. Your recovery is yours, not your doctor’s.

    And I guess that’d be it.

    (1:07:28)
    That’s profound,

    That’s profound, my friend. I really appreciate you reaching out. ⁓ Thanks for sharing your story. I had such a great time chatting to you, getting to know you a little bit.

    Brandon (1:07:38)
    Yeah, no, absolutely, and the same, man. Again, I wish we were closer. Next time you’re in the States, if you come back, let me know. I’d love to hang out. I’ll come and drive to you. We’ll hang out. We’ll have a good time,

    (1:07:52)
    That’d be awesome. Thanks for being on the podcast.

    Brandon (1:07:55)
    Absolutely man and look for my order for your book in the next few hours here I’ve been waiting on some money situations to clear up that actually just resolved today But I will be picking up the book even though I can’t read yet I’m picking up the book so that when I get there, it’ll be the first thing that I dive into

    (1:08:16)
    Thank you man, that’s so generous of you man. I really appreciate it. Thanks so much

    Bill Gasiamis (1:08:21)
    Before you go, I want to leave you with one thought. If something in today’s episode resonated, if you found yourself thinking, that’s me, that’s exactly what I’m dealing with, then I want you to know something important. Recovery isn’t just about what happened to your brain. It’s about how you respond next, emotionally, mentally, physically, and socially.

    That’s what my book, The Unexpected Way That a Stroke Became, The Best Thing That Happened is about. It brings together the 10 tools that stroke survivors, including me, unknowingly use to move from surviving to growing. You shouldn’t have to piece this together on your own. And now with this book, you won’t have to. You can find it at recoveryafterstroke.com/book. And if this episode helped you, consider sharing it with someone who might need it or leaving a comment to let others know.

    that they’re not alone either. I’ll see you in the next episode.

    The post Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living appeared first on Recovery After Stroke.
  • Recovery After Stroke

    Heard a Pop in My Head: A Stroke Survivor’s Warning You Shouldn’t Ignore

    26/01/2026 | 1h 7 mins.
    Heard a Pop in My Head: The Stroke Warning Sign Most People Ignore

    When Phat heard a pop in his head, it didn’t feel dramatic.

    There was no collapse. No sirens. No panic.

    Just a strange sensation.

    A few minutes of numbness.

    Then… everything went back to normal.

    So he did what most people would do.

    He ignored it.

    Five days later, he was being rushed to the hospital with a hemorrhagic cerebellar stroke that nearly cost him his life.

    This is not a rare story.

    It’s a dangerously misunderstood stroke warning sign and one that often gets dismissed because the symptoms disappear.

    When You Hear a Pop in Your Head, Your Brain Might Be Warning You

    “Hearing a pop in my head” isn’t something doctors list neatly on posters in emergency rooms.

    But among stroke survivors, especially those who experienced hemorrhagic strokes, this phrase comes up more often than you’d expect.

    For Phat, the pop happened while stretching on a Sunday. Immediately after:

    His left side went numb

    The numbness lasted about five minutes

    Everything returned to “normal”

    No pain. No weakness. No emergency, at least that’s how it felt.

    This is where the danger lies.

    Stroke Symptoms That Go Away Are Often the Most Misleading

    One of the most common secondary keywords people search after an experience like this is:

    “Stroke symptoms that go away”

    And for good reason.

    In Phat’s case, the initial bleed didn’t cause full collapse. It caused a slow haemorrhage, a bleed that worsened gradually over days.

    By Friday, the real symptoms arrived:

    Severe vertigo

    Vomiting and nausea

    Inability to walk

    Double vision after stroke onset

    By Sunday, his girlfriend called an ambulance despite Phat insisting he’d “sleep it off.”

    That delay nearly killed him.

    Cerebellar Stroke: Why the Symptoms Are Easy to Miss

    A cerebellar stroke affects balance, coordination, and vision more than speech or facial droop. That makes it harder to recognise.

    Common cerebellar stroke warning signs include:

    Sudden dizziness or vertigo

    Trouble walking or standing

    Nausea and vomiting

    Double vision

    Head pressure without sharp pain

    Unlike classic FAST symptoms, these can be brushed off as:

    Inner ear issues

    Migraine

    Muscle strain

    Fatigue or stress

    That’s why “pop in head then stroke” is such a common post-diagnosis search.

    The Complication That Changed Everything

    Phat’s stroke was classified as cryptogenic, meaning doctors couldn’t determine the exact cause.

    But the consequences were severe.

    After repairing the bleeding vessel, his brain began to swell. Surgeons were forced to remove part of his cerebellum to relieve pressure and save his life.

    He woke up with:

    Partial paralysis

    Severe balance impairment

    Double vision

    Tremors

    Aphasia

    A completely altered sense of identity

    Recovery wasn’t just physical.

    It was existential.

    The Invisible Disability No One Warns You About

    Today, if you met Phat, you might not realise he’s a stroke survivor.

    That’s one of the hardest parts.

    He still lives with:

    Fatigue

    Visual processing challenges

    Limited multitasking ability

    Balance limitations

    Cognitive overload

    This is the reality of invisible disability after stroke when you look fine, but your nervous system is working overtime just to keep up.

    Recovery Wasn’t Linear — It Was Personal

    Phat describes himself as a problem solver. That mindset became his survival tool.

    Some of what helped:

    Self-directed rehabilitation (sometimes against advice)

    Meditation and breath-counting to calm the nervous system

    Vision therapy exercises to retrain eye coordination

    Strength and coordination training on his affected side

    He walked again after about a year.

    Returned to work after two.

    And continues to adapt more than four years later.

    Recovery didn’t mean returning to the old version of himself.

    It meant integrating who he was with who he became.

    Why This Story Matters If You’ve Heard a Pop in Your Head

    This blog isn’t here to scare you.

    It’s here to clarify something crucial:

    If you hear a pop in your head followed by any neurological change, even if it goes away, get checked immediately.

    Especially if it’s followed by:

    Numbness

    Vision changes

    Balance issues

    Confusion

    Head pressure or vertigo

    Stroke doesn’t always announce itself loudly.

    Sometimes it whispers first.

    You’re Not Alone — And Recovery Is Possible

    Phat now runs a platform called Hope for Stroke Survivors, sharing stories, tools, and reminders that recovery doesn’t end when hospital rehab stops.

    If you’re early in recovery, or terrified after a strange symptom, remember this:

    Stroke recovery is complex

    Timelines vary

    Healing continues for years

    You don’t have to do it alone

    Learn more about recovery journeys and tools in Bill Gasiamis’ book:

    The Unexpected Way That a Stroke Became The Best Thing That Happened

    Support the podcast and community on Patreon:

    Patreon.com/Recoveryafterstroke

    “I heard a pop in my head… and because everything felt normal again, I ignored it.”

    Final Thought

    If this article helped you name something you couldn’t explain before, share it with someone you love.

    Because sometimes, recognising a stroke doesn’t start with fear.

    It starts with understanding.

    Disclaimer:

    This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

    “I Heard a Pop in My Head” — Phat’s Cerebellar Stroke Story

    A pop. Five minutes of numbness. Then everything felt “normal.” Days later, Phat collapsed with a cerebellar haemorrhage.

    Phat Cao’s Linktree

    Research shortcut I use (Turnto.ai)

    I used Turnto.ai to find relevant papers and sources in minutes instead of hours.

    If you want to try it, my affiliate LINK

    PDF Download

    The Present Moment Is All We Have: You survived the stroke. Now learn how to heal from it.

    Highlights:

    00:00 Introduction and Life Before the Stroke

    01:14 The Stroke Experience

    09:05 Initial Diagnosis and Recovery

    13:29 Rehabilitation Journey Begins

    17:44 Mental Challenges of Recovery

    22:40 Identity Transformation Post-Stroke

    30:57 Mindset Shifts and Control

    36:39 Breath Control Techniques for Stress Relief

    42:04 Managing Tremors and Physical Recovery

    48:09 Growing an Online Presence and Sharing Stories

    01:01:01 Understanding Stroke Recovery

    Transcript:

    Phat (00:00)

    on a Sunday. And then it wasn’t until I felt like severe stroke symptoms on a Friday, which was about, what is it, four or five days. And then I didn’t think I was having a stroke because I didn’t realize the details of the stroke.

    And so I just went about my day on that Sunday and until Friday I started getting like some BEFAST symptoms and then, you know, I tried to sleep it off it was actually just me and my girlfriend at the house and then she didn’t feel, comfortable. So then she called the ambulance, even though I told her I’ll just sleep it off. It’s okay.

    Introduction and Life Before the Stroke

    Bill Gasiamis (00:37)

    today’s guest is Fat Kyle, a stroke survivor who experienced something most people would brush off. He heard a pop in his head. It went away, so he kept going. Days later, his brain was bleeding.

    Fat story isn’t traumatic for the sake of it. It’s honest, it’s thoughtful, and it speaks directly to anyone who’s ever ignored a symptom because it didn’t last. In this conversation, we talk about delayed stroke symptoms, cerebellar hemorrhage, identity loss, invisible disability, meditation, and what it really takes to rebuild a life when your old one disappears.

    And if you’ve ever had that moment where you thought, was that something or nothing? This conversation really matters. Now, before we get into it, I want to briefly mention something that fits naturally with this topic. When you’re dealing with stroke, whether you’re newly affected or years into recovery, finding clear relevant information can be exhausting.

    research opinions, patients, stories and updates constantly coming out. And most of it isn’t written.

    with stroke survivors in

    tool I personally use and find helpful is Turn2. I like it because it cuts down the time and energy it takes to stay informed. Instead of digging through endless articles, Turn2.ai pulls together all stroke-related research updates, expert insights, and patient discussions in one place based on what you actually care about. It’s not about replacing doctors, it’s about reducing noise.

    when your focus, energy and capacity are limited. You’ll find the link in the description. And just to be transparent, if you choose to use my link, it helps support the podcast at no extra cost to you.

    All right, let’s get into Fats story.

    Bill Gasiamis (02:23)

    Phat Cao Welcome to the

    Phat (02:26)

    Hey Bill, thank you. It’s an honor to meet you.

    Bill Gasiamis (02:29)

    pleasures all mine. I pronounce that correctly?

    Phat (02:32)

    Yeah, you know you did. It’s not that complicated. Fat Cal is right. I blame my parents.

    Bill Gasiamis (02:39)

    Fair enough. that a common name in Vietnam?

    Phat (02:42)

    You know, it’s not a common name. Actually, it’s not a common Vietnamese name. But a lot of people do have fat, the first name, and then the last name people do. Some people do have it. It just happens in America, it means something else, you know, in English.

    Bill Gasiamis (02:58)

    It totally does, it sounds like I’m being mean.

    Phat (03:01)

    Yeah, I get it all the time. I’ve had to grow up like this. It’s been kind of rough.

    Bill Gasiamis (03:08)

    I hear you. Have you ever considered making a change to one of the names just for the sake of ease?

    Phat (03:15)

    Phat’s so funny. You know what? Because I wasn’t born in the US, because I live in the US. And when I got my citizenship, that was something I thought about. But then after I thought about it, I’m like, well, this is the name that was given to me. Vietnamese, it means something else. And so then I decided to keep it.

    Bill Gasiamis (03:33)

    What does it mean in Vietnamese?

    Phat (03:34)

    Phat was kind of like,

    means prosperity and also like high prosperity.

    Bill Gasiamis (03:41)

    Dude, that’s a cool name.

    Phat (03:43)

    Thank you, yeah. Yeah, so yeah, when I tell people, they’re like, oh wow.

    Bill Gasiamis (03:47)

    I had, ⁓ my name is not Bill, it’s Vasili. Phat’s my Greek name. My parents gave me that name when I was born. And when I had, when I turned 18 and I got my driver’s license, they asked me, because my birth certificate says Vasili, what do you wanna have on your driver’s license? And I think I made the wrong decision then. I chose Bill for the sake of ease of use.

    And once it’s on your driver’s license, then it goes on pretty much every other document after that. And it’s really difficult to go back and change everything. I kind of, I don’t regret it, but I love the connection to your roots, you know, with the original name that you were given.

    Phat (04:23)

    Yeah.

    ⁓ yeah.

    I get, you know what, I had that decision too, because everyone pretty much in my family, they changed their names. So, you know, when I was at that point, I decided not to. And so, hey, it is what it is. You know, I had to go through some stuff, but I think it kind of set, it created me to, you know, to kind of not care so much and just embrace my roots.

    Bill Gasiamis (04:59)

    Yeah. And with a name like prosperity, it’s probably helpful in taking, that attitude to the rest of your life, especially after a stroke, man.

    Phat (05:11)

    Yeah, yeah, definitely I had to live it, you know, but yeah. I don’t know how prosperous or how much that is since I had a stroke, but I had to live it.

    Bill Gasiamis (05:25)

    You have to adapt it somehow. So what was life like before stroke? Anyway, how did you go about your day?

    Phat (05:32)

    You know, before the stroke, was active. You know, I like to do a lot of community service. I was involved with a lot of nonprofits. You know, I felt like I did various things. You know, I went through a lot of different stages in my life, but I’ll start off coming to America here. You know, I grew up in a trailer home. My parents escaped Vietnam, took us over here. And, you know, we grew up

    pretty poor and so you know he’s just growing up in the US my parents didn’t know a lot of English and so that was kind of my childhood. But just growing up and slowly you know learning how to adjust you know that was kind of my thing and I was trying to learn as much as I could so that way I can help my family and stuff and you know be the one to provide and stuff too and help them out for all their sacrifices. But yeah that was my life before the stroke in a nutshell.

    Bill Gasiamis (06:31)

    What kind of

    conditions did they escape?

    Phat (06:33)

    You know what, was towards, it was at the end of the war and so the communists had taken over. So they were fighting for the South, you know, which is allies with the U.S. and they wanted to bring us over here for freedom.

    Bill Gasiamis (06:48)

    Wow, pretty intense. old were you?

    Phat (06:49)

    Yeah.

    You know, I was one year, not even one years old when I got over here, but during when they escaped, they went to a refugee camp in the Philippines and that was where I was born. I also have two older sisters that were born in Vietnam, but I was the only one born in the Philippines at the refugee camp until they got, they got accepted to the U.S. and then they took our whole family over here.

    Bill Gasiamis (07:16)

    And what year was that?

    Phat (07:18)

    Phat was 1983.

    Bill Gasiamis (07:20)

    Dude, you don’t look like you were born like in 1983. You look like you were born only like in the 2000s.

    Phat (07:24)

    Hey, I appreciate it.

    No, I was born in 1983. So I’m 42 right now.

    Bill Gasiamis (07:34)

    Now you don’t look like you’re 42, but that’s great.

    Phat (07:38)

    I it. Yeah, you know, I had the stroke when I was 36. So it’s been about four years and seven months. I did a calculation.

    Bill Gasiamis (07:48)

    How did that come about? happened? How did you end up having a stroke?

    Phat (07:54)

    You know, as far as the stroke, I had a hemorrhagic stroke. It was actually a cerebellar stroke and the doctors could not determine exactly how it happened. And so, you know, they did some tests and stuff, but they couldn’t figure it out. So mine is considered cryptogenic.

    Bill Gasiamis (08:13)

    Defend the means.

    They found the bleeding blood vessel though, right?

    Phat (08:19)

    Yeah, they found a bleeding. ⁓ One of the arteries in the cerebellum was bleeding. And so it was like, I felt like a

    on a Sunday. And then it wasn’t until I felt like severe stroke symptoms on a Friday, which was about, what is it, four or five days. And then I didn’t think I was having a stroke because I didn’t realize the details of the stroke.

    Heard a Pop in My Head

    And so I just went about my day on that Sunday and until Friday I started getting like some BEFAST symptoms and then, you know, I tried to sleep it off and until, you know, it was actually just me and my girlfriend at the house and then she didn’t feel, you know, like comfortable. So then she called the ambulance, even though I told her I’ll just sleep it off. It’s okay.

    Bill Gasiamis (09:14)

    Did you actually hear a pop? Felt a pop? I’ve heard similar stories before. like, what was that like?

    Phat (09:22)

    Okay, you know, I did feel a pop. And then actually, when I was stretching at that time, which I don’t tell a lot of people because it sounds really funny, but I was stretching at that time and then I felt a pop. And so that’s when like part of my left side went numb. And then I was wondering if it was a stroke and I didn’t know much about strokes, right? You have your assumptions.

    what a stroke is and so I was like, well maybe it’s a stroke and at that time I waited about five, 10 minutes and I felt normal again. So then I just went about my day and at that time I was doing a lot of stuff so I kind of forgot about it. Which, you know, it doesn’t make sense but yeah, I forgot about it.

    Bill Gasiamis (10:13)

    Did the numbness hang around the entire five days before you got to the hospital?

    Phat (10:19)

    It did not. It only stayed for about five minutes and then it went back to normal.

    Bill Gasiamis (10:25)

    Wow. Phat would kind of distract you from thinking that there was something wrong, right? Because the numbness goes away. hear a pop, so what? Like everything’s fine.

    Phat (10:26)

    So then…

    Yeah.

    Yeah, then I should

    have went to the hospital and got it sort of looked into, but at that time I didn’t. And then I just continued with what I had to do and I went back to work and not realizing it was a slow bleed. You know, I think your body, now that I’m looking back, I think your body kind of fixes itself a little bit as much as it can. And then it was like, it turned into like a slow bleed until it got to a point where.

    Bill Gasiamis (10:50)

    realizing it ⁓

    Phat (11:04)

    I was nauseous, I couldn’t walk my vertigo, I was throwing up. My eyes, I had double vision, and that’s when it really hit me.

    Bill Gasiamis (11:05)

    just being vicious. I could be little bit of wimp, I could be the longest three in the I know why.

    Friday would have been the worst day, was that kind of progressively getting worse as the days were passing or did it just sort of suddenly come on on Friday?

    Phat (11:15)

    Friday.

    It just suddenly came on on Friday. I had a lingering like small headache, but then it suddenly came on on Friday.

    Bill Gasiamis (11:27)

    Thank

    Hmm. And then from there, were you, let’s go to the hospital or were you trying to play it down again?

    Phat (11:40)

    I was trying to play it down until Sunday. So I was trying to sleep it off. And then, you know, by the time Sunday hit, you know, finally my girlfriend just called the ambulance and that’s when they came and then they checked me out and they found out I was having a stroke.

    Bill Gasiamis (11:58)

    I had a similar experience. I noticed, I didn’t hear anything, but I noticed numbness in my big toe, my left toe. And that was on a Friday. And then it was slowly, the numbness was spreading from my toe to my foot, to my ankle. And then by the Friday later, so seven days later, nearly eight days later, the numbness had gone down my entire left side.

    Phat (12:07)

    Mmm.

    Bill Gasiamis (12:27)

    So I was progressively getting worse every day. It was slowly creeping up as the blood vessel kept leaking. The blood clot got bigger and bigger. And my wife was telling me, you need to go to the hospital. You need to get a checked out, all that kind of stuff. I went to the chiropractor because I thought I’d done something to my back. And that’s why I had a pinched a nerve. I thought something like that. Chiropractor couldn’t find anything. I went back to the chiropractor the Friday. The chiropractor said, you need to go to the hospital because

    whatever’s happening to your left side is not happening because of your ⁓ back or your spine or any of that stuff. And instead of going to the hospital when he said so, I went home. My wife said, you what did he say? I told her, I told her that he said I should go to the hospital. She said, why are you at home? ⁓ I was reluctant the whole time. Like I didn’t wanna go because I had work to do, I was busy.

    Phat (13:13)

    Really?

    Rehabilitation Journey Begins

    Bill Gasiamis (13:26)

    It was really busy work week. We were helping out a whole bunch of clients. So yeah, it was insane, but what you’re describing that delay, the delay is very familiar.

    Phat (13:35)

    Phat’s insane.

    You know, that’s the first time I’ve heard someone that has a similar experience to mine and I can relate with you. You know, I was like, it’s okay. And there was a lot going on. didn’t want to, you know, delay certain things that was going on. I was in the process of closing on a house and stuff. So I’m like, okay, let’s just finish this up. You know, I didn’t want it to put me behind or nothing.

    Bill Gasiamis (14:01)

    Yeah. What kind of work were you doing?

    Phat (14:03)

    You know, I was doing engineering, so I’m an engineer for Boeing.

    Bill Gasiamis (14:08)

    Yeah, pretty intense job.

    Phat (14:11)

    Yeah, you know, I do see that, but it wasn’t because of stress. I don’t believe it was. Because I really did have a good, I feel like I did have a good balance of with my stress and also a balance of, you know, play and stuff like that too. And I felt like I was handling it okay.

    Bill Gasiamis (14:31)

    smoking, drinking, any of that kind of stuff.

    Phat (14:34)

    You know, before then I was smoking and drinking more, but I wasn’t smoking that much. Before the stroke, I probably had quit about a year before that, but I was smoking before that for about like 10 years, 15 years.

    Bill Gasiamis (14:41)

    Yeah.

    Yeah, again, familiar. I was 37 when I had my bleed the first time and I was also, yeah, yeah, that’s crazy. Like it happens around the same age for so many people I’ve interviewed between the age of 35 and 40 when they’ve had bleeds specifically. I don’t know why. And my, and I was smoking for,

    Phat (14:58)

    ⁓ we’re like the same age.

    joke, yeah.

    Bill Gasiamis (15:19)

    I was 37, so I was smoking from the age of 13 or 14 on and off. Um, I wasn’t drinking heavily, but it was drinking. But again, my thing was, um, something I was born with. was potentially going to bleed at some point. And, um, it’s just one of those things. Uh, but I think that my, uh, my lifestyle didn’t.

    Phat (15:36)

    all yours.

    Bill Gasiamis (15:44)

    It didn’t make things better. It sort of created the perfect storm for it to bleed. And that’s why since then I don’t drink and I don’t smoke 100%. You know, like I’ve just completely stopped. I have a drink maybe once a year.

    Phat (15:56)

    yeah, I’m the same way too, I just…

    Yeah, I get you. I was never like a heavy drinker maybe once a weekend, you know, but now I completely stop smoking or drinking. It just doesn’t interest me.

    Bill Gasiamis (16:09)

    Yeah, what were the early days like?

    Were you scared? Was it confusing? How do you deal with the initial diagnosis and your brain’s bleeding?

    Phat (16:21)

    Yeah, you know, in the beginning, it was a big shock. know, I think looking at me now, you know, you couldn’t tell. But, you know, I’ve built up to this point. But the biggest thing was I had complications when I had the stroke and, know, I had ⁓ my brain was swelling and so they had to do a second surgery on me to remove part of my brain. And so then that’s what left me with the, you know,

    disabilities and stuff, which, you know, I had most of the symptoms that most stroke survivors experience, spasticity, aphasia. I had tremors, know, partial paralysis, my balance, vision, things like that. But yeah, it was tough for sure, just coming home and at first you’re just so busy in the hospital working to regain, you know, yourself again, to rebuild yourself. But coming home, yeah, it’s just a…

    It hits you because you can’t do anything that you used to do. And everything changes, know, even your relationships change.

    Bill Gasiamis (17:22)

    Yeah.

    Which part of the brain did they take out man? And why did they need to take it out? Was it just a blood vessel that burst or?

    Mental Challenges of Recovery

    Phat (17:33)

    They took part of my cerebellum out and it was because after they repaired, since I had a hemorrhagic stroke, they repaired that vessel. It was, my brain started swelling and there was blood just filling up so then they had to remove part of my brain so they can allow space for it to swell up.

    Bill Gasiamis (17:59)

    Wow.

    Phat (18:00)

    Yeah, so I don’t know, you know, they decided to remove part of my brain, but it ended up working out. Actually before that, before they removed the second surgery, I was completely partially paralyzed. But in a way, since that happened, I had some movement.

    Bill Gasiamis (18:18)

    It’s just crazy, isn’t it? I had a recent brain scan where, because I’ve been having a lot of headaches and to throw caution into the wind, like they went and got me another brain scan literally about six months ago. And it was the first time I saw what my brain looks like after brain surgery. And there’s like a canal.

    Phat (18:37)

    they do.

    Yeah.

    Bill Gasiamis (18:47)

    like a canal from my ear, that’s all, there’s like an entry wound and then there’s a line that goes in to the spot where they went and removed the blood vessel, like where the damage has caused my deficits, the ones that are still with me. And it’s just intense that you can have a little bit of your brain missing or gone or whatever removed and you’re still functioning. It is just amazing how far technology and how far

    Phat (19:04)

    Yeah.

    Bill Gasiamis (19:17)

    Medicine has come.

    Phat (19:18)

    Yeah, that’s so incredible. The human body too, it makes you think about it. You know, I hear different things about, and just knowing like parts of our brain is dead, you know, and it’s able to, you know, regain different things. Neuroplasticity, right?

    Bill Gasiamis (19:36)

    Yeah. How long did it take you to get back on your feet after you realized you can’t walk?

    Phat (19:42)

    It took me about a year, but at that time I was still using a walker.

    Yeah, so about a year.

    Bill Gasiamis (19:47)

    And then from a walker, it

    become, how do you take the first steps away from a walker? What happened to allow that progression?

    Phat (19:57)

    you

    You know, I was told to use a cane and it would have helped me big time. But what I did was I skipped the cane and and then I use I just did it without the walker and I slowly built up built up the confidence. You kind of adjust. think each each time you transition like from one one from wheelchair to walker, you know, and then without the walker, you have to.

    Re-adapt the whole time and so that’s what I kind of did and it was ugly, know I fell a lot and stuff, but that’s what I did. I just kind of went for it

    Bill Gasiamis (20:33)

    So for those of you watching on YouTube, you might’ve noticed the change in scenery. That’s because the first part of the interview was recorded more than a week ago. And we had some technical difficulties because fat was in the car and we couldn’t get a decent connection. So we’re reconvening with that fat at home.

    Phat (20:55)

    Yeah, this is is better better connection

    Bill Gasiamis (20:58)

    Way better. And we finished the discussion off by me asking you a question about what you had said about how you continued your rehabilitation alone, where you were meant to be walking with the the Walker and you ditched it. And I was wondering, did your team find out that you weren’t walking with a Walker? Did they kind of like suss out that you

    We’re being, what’s the word, maybe a little bit risky or unsafe in the way that you were going about your rehab.

    Phat (21:34)

    Yeah, you know, I didn’t, I kind of, didn’t mention it to them really, but there was one of them that I did mention it to and she recommended I use a cane to be safe. And, you know, I did, I did say, tell her that I was trying it without it because I noticed that when I like switch like from the wheelchair in the beginning to the walker, it just like every time you switch, I noticed that you would have to adjust. so

    That’s the reason why I just went from the walker just to walking without a cane.

    Bill Gasiamis (22:08)

    Is it so that there’s less of an adjustment period between one thing to the next thing to the next thing was a kind of like just bypass everything in between and go straight to walking.

    Phat (22:18)

    Yeah, it was me being risky too, because I know if you fall or something, it could cause a lot of damage. But yeah, it was kind of my risk and my therapist, she wasn’t too happy about it. But I didn’t talk about it that much either. So I kind of kept it a little private too.

    Identity Transformation Post-Stroke

    Bill Gasiamis (22:40)

    what would you say some of the toughest challenges that you faced early on?

    Phat (22:44)

    I would say the toughest for sure is the mental and getting used to my new identity. You you come home and everything’s completely different. It kind of hits you at once. And I think, you know, living a normal life and then all of a you’re, you have a disability and you know, you can’t do the same things, you know, you could do the independence. So I think it’s all that.

    Bill Gasiamis (23:14)

    Yeah, you know, the mental, what does that mean for you? Like what is the mental challenge? Like, can you describe it?

    Phat (23:24)

    Yeah, I would say sadness. think anxiousness, fear. You don’t know what’s going to happen in your future. I think the unknown. Low energy. think those are the things that pop up in my head.

    Bill Gasiamis (23:45)

    Does it make you kind of overthink in a negative way or are you just comparing your old self to your new self?

    Phat (23:51)

    I think comparing my old self to my new self.

    Bill Gasiamis (23:55)

    Hmm. Do you reckon, do you reckon you brought some of that old self with you or is there a pause on the old self and why you’re kind of trying to work out what’s happening moving forward? Because a lot of people will talk about how, you know, their identity gets impacted, especially early on. And then sometimes down the track, when I speak to stroke survivors who are many years down the track, they might talk about how

    They brought some of their identity with them and then, and they’ve integrated that old identity into the new way they go about their lives. Early on is the old identity kind of far away over there and then there’s something completely different here. How did you experience it?

    Phat (24:44)

    Yeah, I think initially there were a lot of things and I wasn’t sure how to handle it. But I think throughout this time, you know, part of me has learned how to process it and resolve it and also rebuild myself. And so I think now, if anything, I take that experience to my present day to learn from and grow from. I feel like I’ve invested in myself enough to ⁓

    not feel the same way, the negative things that, you know, were coming in the beginning. But now I think I’ve processed it correctly. And so I think I’m a lot better now.

    Bill Gasiamis (25:27)

    A lot of stroke survivors always often ask me for a timeline, you how long before this happened? How long before that happened? And we’re all so different, so it doesn’t really apply. But do you have a sense of the time that it took for you to integrate old self with new self? ⁓ I know you ⁓ got a substantial amount of your movement and your function back. How did you integrate?

    Phat (25:52)

    Yeah.

    Bill Gasiamis (25:53)

    the two and how long did it take before you kind of felt okay with who you were.

    Phat (25:57)

    Yeah, that’s a that is a hard question to say it wasn’t like Suddenly everything was okay. It was kind of a process I think as you I mean I’m for over four and a half years now and so it was gradual but I would say initially about Two years, you know is when it took me two years to build myself up to when I could finally work again and Maybe about the two-year mark I felt

    like things were starting to come more together. But it was an evolution. feel like, you know, every year, every month or whatever, you learn different things. And so it’s kind of a process. Even today, you know, I’m still learning different things and, you know, it’s changing too in different ways, right? But that’s how was for me.

    Bill Gasiamis (26:48)

    Yeah.

    What kind of person are you? Are you like curious? Are you a problem solver? I’m very interested about kind of understanding how people come to be on my podcast. I know that there’s a portion of people who come on because they want to share their story and help connect to other people. Also share their story to help people through the early days of their own challenge. People also connect to meet me so that we can create a conversation and meet each other.

    Phat (26:55)

    You know.

    Yeah.

    Bill Gasiamis (27:19)

    How do you go about your, what is your approach to stroke recovery about? What’s the fundamental thing that it’s about?

    Phat (27:29)

    Yeah, you know, that’s what I love about your podcast because it’s people from all walks of life. And I really like how you set it up. I mean, you say you don’t have to even prepare for it, but I think I’m the type of person. Yeah, I think I am ⁓ naturally a problem solver. think, know, in initially someone asked me if I cried and normally I, I don’t cry. And I remember when I had the stroke, once I got home,

    You know, I suddenly broke out in tears and you know, it was with my mom right there. And so it just hit me. know, initially I think, you know, we all get hit with that and our emotions and, you know, everything bottles up and has to come out or should come out. But, um, you know, I am a problem solver. I felt like after time, it gave me some time to process it. And I started thinking a bit like, okay, so how am I going to tackle this?

    So I tried to think of it like a problem that I had to solve and I slowly broke it down into pieces and started building myself up. know, I mean, when you look at me now, you you wouldn’t look at me and think like, okay, his stroke probably wasn’t that bad. But you know, it’s a lot different now than it was in the beginning. And so, you know, and that’s why with me, I figured it out. I started figuring out things and slowly improved until where I’m at now.

    Bill Gasiamis (28:53)

    That whole thing is that if you look at me now, you wouldn’t know that I had a stroke and I don’t come across as somebody who had a stroke, et cetera. And that’s a real challenge for me because I have had the worst week leading up to this interview again. Today’s probably the first day I felt really good, maybe for about four or five days. And I was struggling with fatigue and I was struggling with brain fog and I was struggling with sleep. And I was just a mess.

    Phat (29:04)

    Yeah.

    Bill Gasiamis (29:23)

    half the person that I was a week earlier.

    And it’s.

    I’m always conscious about the fact that I put off of this vibe on my podcast interviews, because I try and be the best version of myself, because you need to be the best version of yourself when you’re interviewing another person, even if you don’t feel the best. ⁓ But at the same time, you want to be, what’s the word like?

    Phat (29:38)

    That’s so good, yeah.

    Bill Gasiamis (29:45)

    you wanna be authentic. I mean, that’s the only word I can come up with. And that means that I need to tell people about how I’m feeling during a podcast. Like I might be tired, half asleep. I might even come across a little bit off, but then still, this is sometimes what stroke looks like and the part of stroke.

    After the interviews, you may not see, you may not see what it’s like. And I don’t want people comparing themselves to me just because I mostly look okay on a podcast interview.

    Phat (30:21)

    Yeah, I think that’s the frustrating thing. no matter whether you look like it or don’t, I think we still both experience different types of things in After Effects. And I understand your situation because it is frustrating because a lot of times we might not show it, but we’re still dealing with things that survivors still experience.

    Mindset Shifts and Control

    And, you know, we in front of the camera, we had to put on a face, right. And even sometimes like at work or in front of my family, they don’t realize I’m still dealing with things. And, you know, even my significant others, there’s things she doesn’t fully understand, and I’m still dealing with it. You know, or I might do something and she’s like, why are you doing that? But she doesn’t realize what I’m going through inside. And the external is one thing and the internal is another.

    Bill Gasiamis (31:12)

    Yeah, extremely difficult for me to even wrap my head around it still. And, you know, I’m nearly 14 years post first stroke, you know, and I’m 12 years post surgery and there’s so many things that have improved and so many things that are better. But you know, when I’m, my kids were over the other day and they don’t often hang around with me for a long amount of time. So they don’t often see what it’s like for me.

    Phat (31:23)

    Yeah.

    Bill Gasiamis (31:41)

    But everyone assumes that I am what’s wrong. Like everyone assumes there’s something wrong. And it’s like, I’m not cranky. There’s nothing wrong. I’m just having a stroke day. Like I can’t be better than what I am right now. And it’s not you, you know, it’s me.

    Phat (31:58)

    Yeah, big time. Yeah, I really feel like sometimes it’s hard for people to understand too if they haven’t had a stroke, but even for survivors to know that even people with, there are invisible disabilities out there, know, and each stroke is so complex and different. So we’re all, you know, having to deal with different things. And so that’s something to be aware of. And it’s good to be aware of that.

    Bill Gasiamis (32:25)

    What are some of the things that you still miss out on that you haven’t gone back to or you can’t do anymore or you choose not to do?

    Phat (32:36)

    Yeah, you know, I used to be a lot more active. I like, I love to snowboard before I can’t do that anymore because my balance is not at that point. And, plus I don’t want to take that risk in case something happens. Like, you know, I get some kind of traumatic brain injury or something or fall. ⁓

    You know, my coordination, my fine manipulation isn’t good. My memory isn’t the best. I still have double vision, so I can’t do any type of like, like people are trying to invite me to play pickleball and I definitely can’t do that. You know, I can’t fall and track the ball, you know, plus my balance is horrible. Yeah. You know, I think my processing, I can only retain so much information or like

    Multitasking even though I think I believe multitasking isn’t the best but it’s like I can’t multitask, know, so you have to really focus in on one thing You know, I mean I built myself up to this point But it’s hard to do multiple things like if I’m really focused on something it’s hard for me to pay attention to something else Yeah, those are just some things

    Bill Gasiamis (33:52)

    You know with double vision, I don’t know anything about it. I’ve met so many stroke survivors who have double vision as a result of the stroke.

    Phat (34:00)

    Yeah.

    Bill Gasiamis (34:01)

    This might sound like a silly question. If you close one of your eyes, does the double vision go away?

    Phat (34:08)

    It does go away. So just to explain, it’s just your eyes aren’t… normally your eyes work together, but then one is kind of offset a little bit. So you’re seeing two pictures, but if you close one eye, then the double vision goes away. But in order for you to improve the double vision, you got to train it to work together.

    Bill Gasiamis (34:23)

    Okay.

    Is that some kind of training that you’ve done that you’re continuing to do?

    Phat (34:30)

    So there’s. ⁓

    Yeah, know what I did initially, I saw a vision therapist that I was seeing them for about a year, but it got really expensive. So I stopped. But now I’m just taking what I learned and I’m practicing it on my own. There is an option for people to get surgery, but I am focused on just doing everything naturally. And so it’s still healing as long as I continue to practice it and exercises stay consistent.

    But just recently, since I’m doing a lot of things, I haven’t been as good at being consistent with my vision therapy exercises, so it’s actually getting worse.

    Bill Gasiamis (35:14)

    huh. So what does the surgery do? Does it change the position of the eye?

    Phat (35:16)

    Yeah.

    Yeah, the surgery does change the position and then it corrects it right away. Which there’s a lot of survivors that have done that. My double vision actually was really extreme, but it’s at the point now where it’s almost corrected.

    Bill Gasiamis (35:40)

    And is that a muscle issue? that like, you know how some strike survivors talk about weakness on their left side? It’s that the muscle activates or becomes deactivated in a particular way. And therefore it doesn’t respond in the same way that it used to. It doesn’t contract and release from the contraction in the same way that it used to. Is that a similar thing that’s happening to the eye?

    Breath Control Techniques for Stress Relief

    Phat (36:09)

    Yeah, it is kind of similar to that. And so what I’ve learned from talking to different therapists, it helps when you like isolate one side and you build that side and strengthen it. And so that’s the part where I’m missing because I’m working them together, but still the affected side is weaker. And so it’s just not strong enough to keep up. It’s kind of like our bodies, like, you know how one side is more affected. So we

    is good for us to isolate it and build it and that’s what I try to do with my effective side normally but with the eye it’s more difficult with the eye because you really have to like wear a patch or something you know

    Bill Gasiamis (36:50)

    Yeah, I hear you. Okay, so you wear a patch, you isolate the other eye, but then at the same time, you’re decreasing the strength of the other eye, or you might be interfering with that one by isolating it.

    Phat (37:02)

    Yeah, you’re right.

    Yeah, that’s exactly it. So you don’t want to patch it too much because you also want the eyes to work together.

    Bill Gasiamis (37:09)

    Yeah, that sounds like a task. I know going to the gym when I’m ⁓ pushing weights with the barbell, my left side might be pushing the same amount of weight, but it’s never going to become as big or as strong as my right side. It always seems to be just, you know, the few steps behind it, no matter what I do.

    it’s improving in strength, but it’s always the weakest link. It’s always the link that kind of makes the last few exercises not possible because it fatigues quicker than the right side.

    Phat (37:43)

    Yeah.

    Yeah, that’s what I deal with too. And a lot of times your dominant side does help it out a lot.

    Bill Gasiamis (37:58)

    kind of dominant side, my dominant side kind of over helps. And then it puts that side at risk.

    Phat (37:58)

    So yeah, sometimes.

    Yeah, it will help.

    Yeah, big time. You know, I’ve learned that there’s different ways to do it. You can build that affected side like with reps and then also sometimes doing a little bit heavier just a few times. I don’t know. I feel like it gets really in depth like how you want to do it. You know, sometimes even like holding a lightweight like up for a long time, it kind of gets heavy and it wants to like fatigue out real fast.

    So there’s different variations that I’ve learned throughout this process.

    Bill Gasiamis (38:40)

    Yeah. Was there a moment, would you say that you had a moment where your mindset shifted and you realized that you were kind of growing through this, even though you had all this challenge and difficulty that you had to overcome?

    Phat (38:58)

    Yeah, you know, I have to really think about it. It’s kind of just been a process and I’ve kind of accepted so much to happen, but I would say for the longest time over a year, you know, I would go down on myself and think about, ⁓ I miss the old ways. But I think as I’ve continued on this path and

    Maybe I don’t think about it as much because I keep myself busy and just trying to recover. so, yeah, but I think I’m trying to think of when it was like kind of like a light bulb moment, but I kind of knew that I couldn’t stay stuck in that because I couldn’t change anything about it. So I had to focus on what I could do or what I had control over.

    Bill Gasiamis (39:52)

    Yeah, that control part is really important. It seems like people who lose control of things ⁓ tend to, depends if you’re a control freak kind of person, right? Some people really like the illusion of control. They tend to feel good when things are predictable.

    I’m kind of that way, I lose, if I lose predictability, take control. I like to take a few steps back and see what I can control. can control the way I think about things, the way I respond to things, the way I act, the way I behave. It becomes about what then I can control on a micro scale. Whereas some people will do control on a macro scale. And some people will control like,

    Phat (40:16)

    Yeah.

    Mm-hmm.

    Bill Gasiamis (40:44)

    their environment and if their environment is okay, then they’re okay within their environment. But I don’t try and control external things. I try to influence them in a positive way, but I won’t expect an outcome from something that I don’t have any influence over. ⁓ And then I kind of try and work on what do I need to do to feel better about that thing that I am out of control of that I cannot change.

    but I can change how I respond to it. That’s kind of where all the work has been. Like where’s the work for you been?

    Phat (41:21)

    Yeah, you know, I do know that I do practice meditation and even before I had a stroke, I did practice meditation and that is one of the big things from meditation that you just naturally have that mindset to do that and to understand. And so I feel like that practice has actually helped me to be more flexible and accept certain things and focus on what I can control more.

    But just to say with the benefits of meditation, a lot of the benefits are specifically for stroke survivors. So I feel like it has helped me tremendously.

    Managing Tremors and Physical Recovery

    Bill Gasiamis (42:04)

    Did it begin, was that kind of one of the tools that helped you to begin to feel hopeful again?

    Phat (42:10)

    Yeah, to feel hopeful, to be able to focus better, have better memory, I guess reduce the pain that I was feeling, the depression. Yeah, there’s a list of things, yeah, think that’s, those are the ones off the top of my head. Yeah, I know it’s like.

    Bill Gasiamis (42:32)

    Are you a guided meditation?

    Phat (42:35)

    You know, I don’t, I just do ⁓ the most simple breath counting meditation. Yeah. It’s kind of, I can explain it, but you just focus on your breathing and counting. So it helps you with your focus too. don’t know. A lot of survivors have a problem with their focus. I did. So, and I still do actually now it’s not like to where I was before the stroke, but it’s getting almost there.

    Bill Gasiamis (42:45)

    What’s your kid?

    Counting how many counts in, how many counts out do you do?

    Phat (43:10)

    So you do inhale and exhale is one, inhale, exhale two, all the way till ten, and then you start over again. If that makes sense, yeah.

    Bill Gasiamis (43:23)

    So you just basically trying to get even inhale and exhalations. Are they even? they one is longer than the other or shorter than the other? Like how does it go?

    Phat (43:36)

    You can do even. I tend to do a longer exhale. Maybe like a, well, cause now I’ve built up the endurance. do about five second in inhale and then like a eight second exhale. But I also put together a PDF. I can send it to anybody for free if they want to just reach out to me. Yeah.

    And I can, you can put my information on the show notes. Yeah. It’s a really basic thing I put together if anyone’s interested. And Navy SEALs, use this type of, I mean, it’s also called box breathing. It’s kind of box breathing or meditation. And, you know, I know they use it for like extreme stress and things like that too.

    Bill Gasiamis (43:59)

    Okay, cool.

    helps people calm their autonomic nervous system to go into a parasympathetic state, which is the relaxed state. That’s what the, yeah, the longer exhalation helps people go there. You can basically intervene in a ⁓ heightened anxious state or a stressed state or a upset state. And you can intervene within a few minutes and bring yourself into a calm state just by changing the way that you breathe. You know what’s really cool fat?

    Phat (44:29)

    That’s exactly it, yeah.

    Bill Gasiamis (44:53)

    my gosh, I learned this the other day on TikTok. think I saw it. I can’t remember who it was that showed it to me. So unfortunately I can’t credit them, but also people who do yoga or that kind of stuff probably already know this, but to me it was like the most brand new amazing thing that I’ve ever learned. And what it was, if you can see my fingers, right? They said that if you try this, if you press ⁓ your thumb onto the finger after

    Phat (44:54)

    Yeah.

    and

    Bill Gasiamis (45:22)

    your

    little finger, I don’t know what it’s called, finger. So these two, so not your thumb, your thumb and not the little finger, the next one over.

    When you breathe, what do you notice? And what I noticed, tell me if you noticed this, is I noticed that my breathing shifts from my belly to my chest.

    somehow my chest takes over the breathing. Somehow my breath moves to my chest and it feels like a labored more anxious breath, right? And then if you shift it from that to your thumb and your first finger,

    Phat (45:43)

    But, sorry, just need to focus.

    Thank

    Bill Gasiamis (46:06)

    your breath automatically shifts to the belly and your diaphragm expands and contracts. And I tried that and I had the most profound experience. The first finger, your first finger and your thumb, two fingers next to them.

    Phat (46:16)

    really?

    on.

    Bill Gasiamis (46:26)

    Yeah, those two, yeah, yeah. ⁓ I felt like my breath shifted automatically on its own when I did that. And I don’t know if everyone gets that experience. So then for fun, I tried it with my wife and I said to her, can you please do this with your fingers? The first one was the little finger. I wish I knew what they were called, but the finger next to the little finger and the thumb.

    Phat (46:26)

    this.

    really?

    Bill Gasiamis (46:54)

    I asked her to do that and I asked her to tell me how does that feel when you’re breathing and she said that feels really terrible, I feel anxious. And I said, okay, cool. Now just please change it to the other two fingers, the first finger and your thumb and then see what that feels like. And she said that feels far better and the anxiousness has gone away.

    Phat (47:17)

    Really? Wow.

    Bill Gasiamis (47:18)

    Yeah.

    So I reckon if you have a play with that and you pay attention, I think I’ve seen a lot of yogis or people who practice yoga or who meditate, think I’ve seen people hold their fingers like that. And as a result of that, perhaps they automatically instinctively activate the diaphragm and the belly breath instead of the chest breath, which is the more anxious breath. It was such an interesting

    little hack to experience literally by changing which two fingers you’re pressing together. And it kind of connects to that meditation side of it. And I think it would add for me, it would add something extra to meditation that I previously didn’t know about. So isn’t that fascinating?

    Growing an Online Presence and Sharing Stories

    Phat (48:09)

    Yeah, that is so fascinating. I actually don’t even normally sit like that. I just put my hands in my lap. But I did. If you notice, I still have tremors on this side, and that’s how I actually got my tremors to reduce is I would hold it like this sometimes and just meditate. And then it’s just like heels or something. But yeah, before it used to shake a lot. Now it’s a lot better.

    Bill Gasiamis (48:17)

    Yeah.

    Yeah.

    Mm-hmm.

    Yeah. So do the meditation from now on.

    Phat (48:39)

    but sometimes just doing these

    finger taps.

    Bill Gasiamis (48:42)

    Yeah, right. That’s for coordination and that, right.

    Phat (48:44)

    Okay,

    you might try that. Yeah, yeah. Also you do use the pointer finger and the thumb.

    Bill Gasiamis (48:47)

    Yeah, try those first two fingers. Make a circle with it.

    That’s it, is that what it’s called, the pointer finger?

    Phat (48:55)

    Okay

    Bill Gasiamis (48:57)

    just connects to your belly.

    Phat (48:59)

    I’m off to the end.

    Bill Gasiamis (49:01)

    I have no idea how, but I love it. love that it does. It’s such a cool thing.

    Phat (49:05)

    Yeah, especially

    you feel that I’m gonna try it. Yeah

    Bill Gasiamis (49:10)

    So you know that tremor that you said about your hand, is that also in your leg?

    Phat (49:15)

    No, it’s only the hand.

    Bill Gasiamis (49:17)

    and it it gets worse when you are tired, I imagine.

    Phat (49:19)

    Yeah.

    Yeah, it does get worse under like pressure or if I’m tired. Yeah.

    Bill Gasiamis (49:32)

    but you’ve found that it’s settled down a lot since the early days.

    Phat (49:37)

    Yeah, it has. So as I continue to build it, it has.

    Yeah, in the beginning it was really bad, but I continued to do different things. A lot of resistance training, like with rubber bands and stuff like that, yeah. I do different things.

    Bill Gasiamis (49:58)

    Do you remember what it was like in the early days? Is that the dominant hand that you use or?

    Phat (50:05)

    No, it’s not my dominant hand.

    Bill Gasiamis (50:08)

    Did they make you try and use it too? Okay.

    Phat (50:09)

    because I’m bright, dumb, and…

    Yeah, they said they want me to use it. Sometimes I do get lazy too. I try different things, like even for a time frame I’ll brush my teeth with my effective side, my non-dominant. But a lot of times I get lazy because it is a lot slower. So I just go to my dominant hand. I’m still guilty of it.

    Bill Gasiamis (50:39)

    just to get the job done quicker.

    Phat (50:41)

    Yeah, yeah.

    Bill Gasiamis (50:42)

    Tell me a little bit about your, ⁓ your Instagram page.

    Phat (50:49)

    Okay. Well, I started an Instagram page. It’s called Hope for Stroke Survivors. And initially, I just made it for myself to collect information on recovery. Because I felt like I was limited on the information out there. And I would find some stuff on social media. And so I started collecting it for myself and

    know, eventually I made it public and I started, people started following it and gravitating towards it. And so I decided to start sharing different like tips. And then I continued to do that and more people started following it until I think that was around a year after my stroke. And now I just continue to do that and it’s grown to this point now. And so

    I felt like a part of it was kind of my outlet. You know, you know, I’m passionate about strokes and I want to share and provide awareness. so, yeah, I started for myself, but now it’s grown to where it’s at now. And I feel like, you know, it’s, I want to provide hope and also share different people’s stories because I really enjoy, and I still enjoy seeing comeback stories. And so, you know, that’s what happened with that. And so now it’s been about, what is it?

    for four years or something. Yeah.

    Bill Gasiamis (52:19)

    Hope for stroke survivors like 11.6K followers.

    Phat (52:23)

    Yes, call them.

    I’m sorry, what was that?

    Bill Gasiamis (52:26)

    It’s got 11.6K followers, 929 posts, and in the description it says, don’t fear change, trust the process. My goal is to spread hope while recovering from a severe stroke. Check out the stories from fellow stroke survivors too.

    Phat (52:45)

    Yeah, you know, after a while, I felt like, ⁓ I want to share survivor stories. feel like bring our community together. There’s a lot of survivors out there that are doing great things like yourself. You know, I found your stuff. And so, you know, I feel like it really gives a lot of us, you know, motivation, hope to believe what’s possible out there, because a lot of us have.

    you know, we get the wrong information, you know, I want to be able to show people what’s possible because a lot of times, you know, there’s like myths or whatever, and I just want to give people that hope. So I’ve expanded it to YouTube and also TikTok. And so, yeah, it’s grown tremendously on YouTube also. So it’s pretty cool.

    Bill Gasiamis (53:33)

    now.

    What kind of content you put out on YouTube?

    Phat (53:37)

    I, the same stuff, I pretty much just blast the same thing on. Well, now I’m starting to do more, I want to do more interviews, but recently I have kind of cut back on it because of time, but I want to do more interviews for like survivors and therapists and doctors on YouTube. I think that’s where I want to take it.

    Bill Gasiamis (54:00)

    Yeah.

    Yeah. To kind of share more information about the kind of ways that they help other people.

    Phat (54:08)

    Yeah, it’s exactly like, you know, what you’re doing. I think that’s amazing. I mean, you helped me out so much. remember yours is actually my top podcast and I would listen to it all the time.

    Bill Gasiamis (54:13)

    Yeah. Yeah.

    Yeah, I really appreciate that. mean, you know what I love is that you’ve been doing this for four years. I’ve been doing this for 10. Somehow you’ve cracked the code. You’ve got 36.8k subscribers. I’ve barely got 8,000. So that’s very interesting to me. Like how that some channels that share pretty much the same type of content grow. And then mine has been going for 10 years and I can’t seem to get above 10,000 subscribers. What’s your trick? know, like how did you manage to get that many subscribers?

    Is there something that you do consistently? I’m also asking for me, but at the same time, there’ll be other stroke survivors who are thinking about starting a YouTube channel perhaps, or thinking about sharing some way or growing this type of a community. And they’re reluctant because they don’t know what they need to do and they don’t know what could happen. Now I’m not completely dissatisfied with 8,000 followers. I’m perfectly satisfied with that.

    But of course I wanna make sure I reach way more stroke survivors because that’s the whole point of this is to get out. Do you have any tips as to what it was that kind of helped the channel grow so fast?

    Phat (55:25)

    Yeah, yeah.

    Yeah, you know, I think a big one is consistency. You know that. But, you know, I have learned a lot of things. read a lot and a part of it is also. Initially, I would share other survivors stories and also it was ⁓ like even survivors in who have had like cancer or different types of sicknesses.

    And so initially I was just doing that for fun. so then I think it attracted more people because it was a variety of things. But then, you know, I know that I didn’t plan to do it. if it’s. If I was going to do that, I don’t want to share other people’s things, you know, like if I want to be more serious, I have to niche down or I got to share my own stuff because I don’t want to take stuff from people. But initially.

    I was sharing a bunch of stuff and not wanting, I wasn’t expecting it to grow like that and I was just doing it for my own reason, for my own purpose and I think that’s how it attracted so many people too.

    Bill Gasiamis (56:46)

    Yeah. Look, it’s, it’s very cool that, um, the people have subscribed. Absolutely. And what’s good about it, even though it’s not all your content, it doesn’t really matter because if you’re putting content out there that people, uh, I mean, you’re not stealing the content, you’re not changing the names or anything like that or repurposing it. All you’re doing is, um, uh, all you’re doing is kind of pointing people to the direction of somebody else’s content channel or whatever. you know what I mean?

    Phat (56:58)

    Yeah.

    Bill Gasiamis (57:17)

    ⁓ but I know what you’re saying.

    Phat (57:18)

    Yeah, yeah.

    mean, I would always put their contact or their credit. But that wasn’t my intent of doing it. And I’m not making any money off of it. But then I’m learning about, OK, what can I do to make this bigger and help more people? And now I’m trying to focus down or just come up with my own content so that way people can see that too.

    Bill Gasiamis (57:31)

    Yeah, yeah.

    Yeah. ⁓ I think there’s not enough voices in stroke recovery and awareness and support and why, you know, we need more. need every version of person, how they’re affected and different cultural backgrounds and that we need way more people kind of putting content out and sharing their version of the story. My story resonates with you, but it might not resonate with someone else, you know? So if, if we can have more people out there listening, who are curious about it.

    Phat (57:53)

    Yeah.

    You’re right, you’re right.

    Bill Gasiamis (58:17)

    ⁓ biting the bullet and doing it.

    It would be fantastic if that happened and then more people to collaborate with.

    Phat (58:21)

    You know, I think it’s

    Yeah, I think it’s easy to pay attention to the subscribers or the followers, but a lot of times too, the way how I did it is if it can just help one person, you know, that makes me happy and then it just grew like that. But that’s what I continue to do. You know, I mean, maybe there’s more subscribers.

    but maybe your content is connecting really deeply with more people, you know? So I feel like it can’t always be compared exactly to the followers. And if you’re a survivor, you know, I wouldn’t want to let you feel like demotivated because of that. you know, I think if you’re passionate about it, just do it. you know, I think there’s plenty of room for a bunch of people, right? Like you were saying.

    Bill Gasiamis (59:15)

    I what you said, like if you’re just passionate, just do it. That’s why I started, I didn’t start out to get a certain number of subscribers or anything like that. I just started out to share. What’s cool is that the subscribers have happened. What’s fascinating is to view like how other people have grown their channel. what, it’s a completely different version of what you’ve done and yours has grown and I’m just keen to learn about it. And I think it will encourage or help other people, you know, do the same thing.

    Phat (59:24)

    Yeah.

    Bill Gasiamis (59:45)

    ⁓ And that’s kind of why I raised it. What I love about what you said is if it helps one person, like I said the same thing, dude, it helps so many more than one person. You just don’t know it because very few people reach out. Not that you’re expecting them to, but people just get the help and then they move on and they go and do good stuff. And it’s like, even better.

    ⁓ But every so often I get people like you sending me messages going Thanks for that episode. That was a great interview. I really got a lot out of that Can you point me in this direction or can you connect me with that person? One of the things that I do best I think then better than anything is I can connect people from all around the world with people who Are ⁓ listening and they want to get information about the thing that you tried or that service that you

    ⁓ purchased or whatever, you that’s what I love about it the most is I can connect people and they could be on different continents. And I love that I can do that from Australia, you know, like it’s crazy.

    Understanding Stroke Recovery

    Phat (1:00:58)

    Yeah

    Yeah. And especially, yeah, it has affected me too. You know, like I wouldn’t, I wouldn’t be standing here like this if I didn’t hear your podcast. You know, I could literally say that, you know, so that’s pretty cool. Yeah. And you’re in Australia. I’m in Arizona.

    Bill Gasiamis (1:01:17)

    It’s fabulous, man. It’s so fascinating. That’s one of the things I love about technology is that with time, technology will improve and make things better for people. And hopefully it’ll help way more people than it’s helping at the moment. It’s definitely helped me with my mental health, having this podcast, this platform, because I can speak to, know, you know, 380 plus interviews now. like all those conversations have helped me ⁓ in my recovery and

    Phat (1:01:35)

    Yeah, that too, yeah.

    Bill Gasiamis (1:01:47)

    and that you just can’t buy that. If I had to sit there with counsel over 380 times, that’s just not doable. I cannot afford that. can’t find the resources to have 380 conversations with a counselor who doesn’t really get me still.

    Phat (1:02:00)

    Yeah.

    That’s amazing, Bill. Yeah, you know, I don’t know. I’m passionate about it. I’m sure you are too. And I can be tired, but as soon as I do this, I can do it all day. I don’t care if I don’t get paid or nothing. It’s just, you know, I went through it and I want other people to, you know, be helped too.

    Bill Gasiamis (1:02:28)

    Does it contribute to meaning, life meaning and purpose for you? Because it does for me plenty.

    Phat (1:02:36)

    Yeah, big time. And I see so many advocates in the community that I respect so much too. you know, I think now that Hope for Stroke Survivors has grown to this point, I want it to be, to bring everyone together too. think that that’d be awesome, you know.

    Bill Gasiamis (1:02:55)

    Yeah, that would be great. As we wrap up, man, I’m just wondering, people are listening, they’ve listened for the first time, they’ve just landed on our podcast, maybe they don’t know anything about me or you, but what would you pass on, like, a little bit of wisdom to somebody who’s just starting their recovery now?

    Phat (1:03:13)

    What I would say is that you’re not alone. You know, and there’s a community of survivors who have gone through it. I think, you know, just take it one step at a time and just know that you can lean on this community of people to help you.

    uplift you. know, I think a lot of people around us aren’t going to understand exactly what we’re going through. And so just remember that you’re not alone in this journey. And it’s possible.

    Bill Gasiamis (1:03:49)

    And on that note, thank you so much for joining me on the podcast. really appreciate it.

    Phat (1:03:53)

    All right, Bill, thank

    you so much. Yeah. Thank you for your time,

    Bill Gasiamis (1:03:58)

    Before you go, I want to leave you with this. If you heard something in this episode that helped you put words to your own experience, you’re not imagining it and you’re not alone. Stroke recovery isn’t linear. Symptoms aren’t always obvious and healing doesn’t stop just because you look fine. If this episode resonated with you, share it with someone who might need it. Leave a comment on YouTube if you’re watching or send it to a survivor who’s early in their recovery.

    And if you want more support, my book is at recoveryafterstroke.com slash book. And to support the podcast, help keep the lights on, go to patreon.com slash recovery after stroke.

    Links for everything mentioned including turn2.ai are in the show notes.

    Thank you for being here and listening. I’ll see you on the next episode.

    The post Heard a Pop in My Head: A Stroke Survivor’s Warning You Shouldn’t Ignore appeared first on Recovery After Stroke.
  • Recovery After Stroke

    Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis

    19/01/2026 | 1h 10 mins.
    Moyamoya Syndrome Stroke Recovery: Judy Kim Cage’s Comeback From “Puff of Smoke” to Purpose

    At 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn’t remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down.

    Here’s the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay.

    And yet, Judy’s story isn’t about doom. It’s about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life.

    What Is Moyamoya Syndrome (And Why It’s Called “Puff of Smoke”)

    Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging.

    Those collateral vessels can become a risk. In Judy’s case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life.

    The emotional gut punch wasn’t only the stroke itself. It was the psychological whiplash of thinking you’re safe… and discovering you’re not.

    The First Enemy in Moyamoya Stroke Recovery: Denial

    Judy didn’t just resist the hospital. She resisted the idea that this was happening at all.

    She’d been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There’s nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help.

    So when her husband wanted to call emergency services, her reaction wasn’t logical, it was emotional. It was the reflex of someone who’d been through too much.

    Denial isn’t weakness. It’s protection. It’s your mind trying to buy time when the truth is too big to hold all at once.

    The Moment Reality Landed: “I Thought I Picked Up My Foot”

    In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it.

    But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren’t speaking the same language.

    She believed she lifted her foot, then saw it hadn’t moved for several seconds.

    That’s when she finally had to admit what so many survivors eventually face:

    Recovery begins the moment you stop arguing with reality.

    Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be.

    The Invisible Battle: Cognitive Fatigue and Energy Management

    If you’re living through Moyamoya syndrome stroke recovery, it’s easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance.

    But Judy’s most persistent challenge wasn’t always visible.

    It was cognitive fatigue, the kind that makes simple tasks feel impossible.

    Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes.

    And then there’s the emotional layer: when you’re a perfectionist, errors feel personal.

    Judy described how fatigue increases mistakes, not because she doesn’t care, but because the brain’s bandwidth runs out. That’s a brutal adjustment when your identity has always been built on competence.

    A practical shift that helped her

    Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It’s not glamorous, but it reduces cognitive load and protects energy.

    In other words: consistency beats intensity.

    Returning to Work After a Moyamoya Stroke: A Different Kind of Strength

    Judy’s drive didn’t disappear after her stroke. If anything, it became part of the recovery engine.

    She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion.

    That matters for one reason: it proves recovery doesn’t have one shape.

    For some people, recovery is walking again.

    For others, it’s parenting again.

    For others, it’s working again without losing themselves to burnout.

    The goal isn’t to recreate the old life perfectly. The goal is to build a life that fits who you are now.

    [Quote block mid-article]

    “If you couldn’t make fun of it… it would be easier to fall into a pit of despair.”

    Humor Isn’t Denial. It’s a Tool.

    Judy doesn’t pretend everything is okay. She’s not selling toxic positivity.

    But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving.

    She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous.

    Laughter can’t fix Moyamoya.

    But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow.

    And sometimes, tomorrow is the whole win.

    Identity After Stroke: When “Big Stuff Became Small Stuff”

    One of the most profound shifts Judy described was this: the stroke changed her scale.

    Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her.

    That’s not magical thinking. That’s a perspective earned the hard way.

    Many survivors quietly report this experience: once you’ve faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn’t matter.

    Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map.

    Helping others doesn’t erase what happened.

    But it can transform pain into purpose.

    If You’re In Moyamoya Syndrome Stroke Recovery, Read This

    If your recovery feels messy… if you’re exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality…

    You’re not broken.

    You’re adapting.

    And your next step doesn’t have to be dramatic. It just has to be honest and repeatable:

    Simplify the day

    Protect energy

    Build routines

    Accept help

    Use humor when you can

    And find one person who understands

    Recovery is not a straight line.

    But it is possible to rebuild a life you actually want to live.

    If you want more support and guidance, you can also explore Bill’s resources here:

    recoveryafterstroke.com/book

    patreon.com/recoveryafterstroke

    This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

    Judy Kim Cage on Moyamoya Stroke Recovery, Cognitive Fatigue, and Finding Purpose Again

    She thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy’s comeback will change how you see recovery.

    Judy’s Instagram

    Highlights:

    00:00 Introduction and Guest Introduction

    01:43 Life Before the Stroke

    11:17 The Moment of the Stroke

    19:56 Moyamoya Syndrome Stroke Recovery

    25:36 Cognitive Fatigue and Executive Functioning

    34:50 Rehabilitation Experience

    42:29 Using Humor in Recovery

    46:59 Finding Purpose After Stroke

    54:19 Judy’s Book: Super Survivor

    01:05:20 Conclusion and Final Thoughts

    Transcript:

    Introduction and Guest Introduction

    Bill Gasiamis (00:00)

    Hey there, I’m Bill Gasiamis and this is the Recovery After Stroke podcast. Before we jump in a quick thank you to my Patreon supporters. You help cover the hosting costs after more than 10 years of doing this independently. And you make it possible for me to keep creating episodes for stroke survivors who need hope and real guidance. And thank you to everyone who supports the show in the everyday ways too. The YouTube commenters, the people leaving reviews on Spotify and Apple.

    The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging.

    She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed.

    and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast.

    Life Before Moyamoya Syndrome

    Judy Kim Cage (01:43)

    Thank you so much, Bill

    Bill Gasiamis (01:45)

    Thanks for being here. Can you paint us a picture of your life before the stroke? What were your days like?

    Judy Kim Cage (01:51)

    Hmm. Well, my life before the stroke was me trying to be a high achiever and a corporate nerd. I think so. I think so. I, you know, I was in the Future Business Leaders of America in high school and then carried that forward to an accounting degree.

    Bill Gasiamis (02:04)

    Did you achieve it?

    Judy Kim Cage (02:20)

    and finance and then ⁓ had gone to work for Deloitte and the big four. ⁓ And after that moved into ⁓ internal audit for commercial mortgage and then risk and banking and it all rolled into compliance, which is a kind of larger chunk there. But ⁓ yeah, I was living the corporate dream and

    Traveling every other week, basically so 50 % of the time, flying to Columbus, staying there, and then flying back home for the weekend and working in a rented office for the week after. And I did that for all of 2018. And then in 2019 is when my body said, hang on a second. And I had a stroke.

    Bill Gasiamis (03:17)

    How many hours a week do you think you were working?

    Judy Kim Cage (03:19)

    Well, not including the treble, ⁓ probably 50-55.

    Bill Gasiamis (03:26)

    Okay.

    Judy Kim Cage (03:26)

    Oh, wish, that wasn’t that that really wasn’t a ton compared to my Deloitte days where I’d be working up to 90 hours a week.

    Bill Gasiamis (03:37)

    Wow.

    in that time when you’re working 90 hours a week. Is there time for anything else? you get to squeeze in a run at the gym or do you get to squeeze in a cafe catch up with a friend or anything like that?

    Judy Kim Cage (03:51)

    There are people that do. think, yeah, I mean, on certain particular weekends and my friends, a lot of my friends were also working with me. So there was time to socialize. And then, of course, we would all let off some steam, you know, at the pub, you know, at the end of a week. But

    ⁓ yeah, I remember on one of my very first jobs, I had been so excited because I had signed up to take guitar lessons and I was not able to leave in order to get there in time. ⁓ so that took a backseat.

    Bill Gasiamis (04:40)

    Yes, it sounds like there’s potentially lots of things that took a backseat. Yeah, work tends to be like that can be all consuming and when friendships especially are within the work group as well, even more so because everyone’s doing the same thing and it’s just go,

    Judy Kim Cage (04:44)

    Yeah, definitely.

    Absolutely. We started as a cohort essentially of, I want to say 40 some people all around the same age. And then, you know, as the years ticked by, we started falling off as they do in that industry.

    Bill Gasiamis (05:19)

    Do you enjoy it though? Like, is there a part of you that enjoys the whole craziness of all the travel, all the hours, the work stuff? it? Is it like interesting?

    Judy Kim Cage (05:31)

    Yeah, I do love it. I actually do love my job. I love compliance. I love working within a legal mindset with other lawyers. And basically knowing that I’m pretty good at my job, that I can be very well organized, that it would be difficult even for a normal healthy person and challenging and that I can do well there.

    And yeah, no, was, when I had put in a year, when I was in ⁓ acute therapy, ⁓ I had spoken with a number of students and they had interviewed me as a patient, but also from the psych side of it all, ⁓ asking, well, what does it feel like to all of a sudden have your life stop? And I said, well,

    ⁓ and things got a bit emotional, I said, I felt like I was at the top of my game. I had finally achieved the job that I absolutely wanted, had desired. ⁓ I felt like I’d found a home where I was now going to retire. And all of a sudden that seems like it was no longer a possibility.

    Bill Gasiamis (06:55)

    So that’s a very common thing that strokes have over say who I interviewed. They say stuff like I was at the top of my game and there’s this ⁓ idea or sense that once you get to the top of the game, you stay there. There’s no getting down from the top of the game and that it just keeps going and keeps going. And, I think it’s more about fit. sounds like it’s more about fit. Like I found a place where I fit. found a place where I’m okay.

    or I do well, where I succeed, where people believe in me, where I have the support and the faith or whatever it is of my employers, my team. Is that kind of how you describe on top of your game or is it something different?

    Judy Kim Cage (07:41)

    I think it was all of those things, ⁓ but also, you know, definitely the kindness of people, the support of people, their faith in my ability to be smart and get things done. But then also ⁓ just the fact that I finally said, okay, this was not necessarily a direct

    from undergrad to here. However, I was able to take pieces of everything that I had done and put it together into a position that was essentially kind of created for me and then launched from there. So I felt as though it was essentially having climbed all of those stairs. So I was at the top. Yeah.

    you know, looking at my Lion King kingdom and yeah.

    Bill Gasiamis (08:43)

    just about to ascend and, and it was short lived by the sound of it.

    Judy Kim Cage (08:49)

    It was, it was, it was only one year beforehand, but I am actually still at the company now. I ⁓ had gone and done ⁓ well. So I was in the hospital for a few months and following that. Well, following the round of inpatient and the one round of outpatient, said, okay, I’m going back.

    And I decided, I absolutely insisted that I was going to go back. The doctor said, okay, you can only work four hours a week. I said, four hours a week, what are you talking about? ⁓ But then I realized that four hours a week was actually really challenging at that time. ⁓ And then ⁓ I climbed back up. was, you know, I’m driven by deadlines and…

    ⁓ I was working, you know, leveraging long-term disability. And then once I had worked too many hours after five years, you know, I graduated from that program, or rather I got booted out of the program. ⁓ And then a year later, I was actually, well, no, actually at the end of the five years I was promoted. So, ⁓

    after coming back full time.

    Bill Gasiamis (10:20)

    Wow. So this was all in 2019, the stroke. You were 39 years old. Do you remember, do you remember the moment when you realized there was something wrong? We’ll be back with more of Judy’s remarkable story in just a moment. If you’re listening right now and you’re in that stage where recovery feels invisible, where the fatigue is heavy, your brain feels slower.

    or you’re trying to explain a rare condition like Moyamoya and nobody really gets it. I want you to hear this clearly. You’re not failing. You’re recovering. If you want extra support between episodes, you can check out my book at recoveryafterstroke.com slash book. And if you’d like to help keep this podcast going and support my mission to reach a thousand episodes, you can support the podcast at Patreon by visiting patreon.com/recoveryafterstroke.

    All right, let’s get back to Judy.

    The Moment of the Stroke

    Judy Kim Cage (11:16)

    Yes, although I was in a lot of denial. ⁓ So we had just had dinner with ⁓ my stepdaughter and her husband ⁓ and ⁓ we were visiting them in Atlanta, Georgia. ⁓ And we said, OK, we’ll meet for brunch tomorrow. You know, great to see you. Have a good night.

    It was four in the morning and I was told I woke up screaming and I felt this horrible, horrible worst headache ever ⁓ on the right side. And I think because I have, I have Moyamoya syndrome, because of that and because I had had brain surgeries, ⁓

    10 years or back in December of 2008, I had a brain surgery on each side. And that at the time was the best of care that you could get. You know, that was essentially your cure. And so I thought I was cured. And so I thought I would never have a stroke. So when it was actually happening, I was in

    denial said there’s no way this could be happening. But the excess of pain, ⁓ the nausea and ⁓ it not going away after throwing up, the numbness ⁓ and then the eventual paralysis of my left side definitely ⁓ was evidence that something was very very wrong.

    Bill Gasiamis (13:09)

    So it was four in the morning, were you guys sleeping?

    Judy Kim Cage (13:14)

    ⁓ yeah, we were in bed. Yep. And yeah, I woke up screaming. According to my husband, I don’t remember the screaming part, but I remember all the pain.

    Bill Gasiamis (13:24)

    Yeah, did he ⁓ get you to hospital? Did he the emergency services?

    Judy Kim Cage (13:30)

    I apparently was kind of threatening to divorce him if he called 911.

    Bill Gasiamis (13:38)

    Wow, that’s a bit rough. Oh my lord.

    Judy Kim Cage (13:41)

    I know. mean, that could have been his out, but he didn’t.

    Bill Gasiamis (13:45)

    There’s worse things for a human to do than call 911 and get your support. Like marriages end for worse things than that.

    Judy Kim Cage (13:53)

    because I’ve been to the ER many, many, many times. And because of the Moyamoya, you would always, it being a rare disease, you would never be told, well, you would have to explain to all the doctors about what Moyamoya was, for one. For two, to say if I had a cold, for instance, that Moyamoya had nothing to do with it.

    Bill Gasiamis (14:11)

    Wow.

    Judy Kim Cage (14:19)

    But also, you know, they would give me an MRI, oof, the claustrophobia. I detested that. And I said, if you’re getting me into an MRI, please, please, please, a benzodiazepine would be incredible. Or just knock me out, whatever you need to do. But I’m not getting into that thing otherwise. But, you know, they would take the MRI, read it.

    and then say, hours and hours and hours later, there’s nothing we can do. The next course of action, if it was absolutely necessary, would be another surgery, which would have been bur holes that were drilled into my skull to relieve some sort of pressure. ⁓ In this particular case, the options were to ⁓ have a drain put in my skull.

    and then for me to be reliant on a ventilator. Or they said, you can have scans done every four hours and if the damage becomes too great, then we’ll move on. Otherwise, we’ll just keep tabs on it, essentially.

    Bill Gasiamis (15:37)

    Yeah. So I know that feeling because since my initial blade in February, 2012, I’ve lost count how many times I’ve been to the hospital for a scan that was unnecessary, but necessary at the time because you, you know, you tie yourself up in knots trying to work out, is this another one? Isn’t it another one? Is it, it, and then the only outcome that you can possibly come up with that

    puts your mind at ease and everybody else around you is let’s go and get a scan and then, and then move on with life. Once they tell you it was, ⁓ it was not another bleed or whatever. Yeah. However, three times I did go and three times there was a bleed. So it’s the whole, you know, how do you wrap your head around like which one isn’t the bleed, which one is the bleed and

    It’s a fricking nightmare if you ask me. And I seem to have now ⁓ transferred that concern to everybody else who has a headache. On the weekend, my son had a migraine. And I tell you what, because he was describing it as one of the worst headaches he had ever had, I just went into meltdown. I couldn’t cope. And it was like, go to the hospital, go to the hospital, go to…

    He didn’t go, he’s an adult, right? Makes his own decisions. But I was worried about it for days. And it wasn’t enough that even the next few days he was feeling better because I still have interviewed people who have had a headache for four or five or six days before they went to hospital and then they found that it was a stroke. it’s just become this crazy thing that I have to live with now.

    Judy Kim Cage (17:26)

    I essentially forced Rich to wait 12 hours before I called my vascular neurologist. And once I did, his office said, you need to go to the ER. And I said, okay, then that’s when I folded and said, all right, we’ll go. ⁓ And then, ⁓ you know, an ambulance came.

    Bill Gasiamis (17:35)

    Wow.

    Judy Kim Cage (17:53)

    took me out on a gurney and then took me to a mobile stroke unit, which there was only one of 11, there were only 11 in the country at the time. And they were able to scan me there and then had me basically interviewed by a neurologist via telecall. And this was, you know, before

    the days of teams and zoom and that we all tested out ⁓ from COVID. ⁓ yeah, that’s.

    Bill Gasiamis (18:35)

    That’s you, So then you get through that initial acute phase and then you wake up with a certain amount of deficits.

    Judy Kim Cage (18:37)

    Yeah.

    my gosh. ⁓ Well, yeah, absolutely. ⁓ Massive amounts of pain ⁓ from all the blood absorbing back into the brain. ⁓ The left side, my left side was paralyzed. My arm fell out of my shoulder socket. So it was hanging down loosely. ⁓ I had dropped foot, so I had to learn to walk again.

    Double vision and my facial group on the left and then. Bluff side neglect.

    Bill Gasiamis (19:31)

    Yeah. So, and then I see in our, in your notes, I see also you had diminished hearing, nerve pain, spasticity, cognitive fatigue, ⁓ bladder issues. You’d also triggered Ehlers-Danlos symptoms, whatever that is. Tell me about that. What’s that?

    Moyamoya Syndrome Stroke Recovery

    Judy Kim Cage (19:56)

    So I call myself a genetic mutant because the Moyamoya for one at the time I was diagnosed is discovered in 3.5 people out of a million. And then Ehlers-Danlos or EDS for short is also a genetic disorder. Well, certain versions are more genetic than others, but it is caused by a defect in your collagen, which

    makes up essentially your entire body. And so I have hypermobility, the blood, I have pots. So my, my blood basically remains down by my feet, it pulls at my feet. And so not enough of it gets up to my brain, which also could, you know, have affected the moimoya. But

    Essentially, it creates vestibular issues, these balance issues where it’s already bad enough that you have a stroke, but it’s another to be at the risk of falling all the time. Yeah. Or if you get up a little too fast, which I still do to this day, sometimes I’ll completely forget and I’ll just bounce up off the sofa to get myself a drink and I will sway and all of a sudden

    Bill Gasiamis (21:07)

    Yeah.

    Judy Kim Cage (21:22)

    onto the sofa or sit down right on the floor and say, okay, why did I not do the three-step plan to get up? ⁓ But sometimes it’s just too easy to forget.

    Bill Gasiamis (21:37)

    Yeah, yeah. You just act, you just move out of well habit or normal, normal ways that people move. And then you find yourself in a interesting situation. So I mean, how, how do you deal with all of that? Like you, you go from having experienced more and more by the way, let’s describe more and more a little bit, just so people know what it is.

    Judy Kim Cage (22:02)

    Absolutely.

    So, my way is a cerebrovascular disorder where your internal carotid progressively constricts. So for no known reason, no truly known reason. And so because it keeps shrinking and shrinking, not enough brain, blood gets to your brain. So what the brain decides to do to compensate

    is it will form these collateral vessels. And these collateral vessels, which there are many of them usually, you know, the longer this goes on, ⁓ they have very thin walls. So due to the combination of the thin walls, and if you have high blood pressure, these walls can break. And that is what happened in my case. ⁓

    Well, the carotids will continue to occlude, but what happens is, ⁓ least with the surgery, they took my temporal artery, removed it from my scalp, had taken a plate off of my skull and stitched that.

    temporal artery onto my brain so that it would have a separate source of blood flow so that it was no longer reliant on this carotid. So we know that the carotid, sorry, that the temporal artery won’t fail out. ⁓ So usually, ⁓ and this was my surgery was actually done at Boston Children’s Hospital ⁓ by the man who pioneered the surgery.

    And he was basically head of neurosurgery at Harvard Medical School and Boston Children’s because they more often find this in children now. And the sooner they find it, the fewer collateral vessels will form once the surgery is performed.

    Bill Gasiamis (24:17)

    Okay, so the long-term risk is that it’s decreased, the risk of a blade decreases if they do the surgery early on too. I love that.

    Judy Kim Cage (24:25)

    The rest.

    But I was diagnosed at the age of 29. So I had quite a while of these collateral vessels forming in what they call a puff of smoke that appears on the MRI. ⁓ And that is what, you know, Moyamoya essentially means in Japanese, is translated to in Japanese, it’s puff of smoke.

    Bill Gasiamis (24:50)

    Wow, you have been going through this for a while then. So I can understand your whole mindset around doctors, another appointment, another MRI. Like I could totally, ⁓ it makes complete sense. You you’re over it after a certain amount of time. Yeah, I’m the same. I kind of get over it, but then I also have to take action because you know what we know what the previous

    Judy Kim Cage (25:07)

    Absolutely.

    Bill Gasiamis (25:19)

    outcome was and now you’re dealing with all of these deficits that you have to overcome. Which are the deficits that you’re still dealing with that are the most, well, the most sort of prolonged or challenging or whatever you want to call them, whatever.

    Cognitive Fatigue and Executive Functioning

    Judy Kim Cage (25:34)

    The most significant, I guess it’s the most wide ranging. But it is. ⁓ Energy management and cognitive fatigue. ⁓ I have issues with executive functioning. ⁓ Things are, you know, if I need to do sorting or filing. ⁓ That actually is.

    one of my least favorite things to do anymore. Whereas it was very easy at one point. ⁓ And now if I want to clean up my inbox, it is just a dreaded task. ⁓ And so now I’ve learned that if I do a little bit of it every day, then I don’t have, it doesn’t have to take nearly as long. ⁓

    Bill Gasiamis (26:26)

    What

    it’s dreaded about it is it making decisions about where those emails belong, what to do to them or.

    Judy Kim Cage (26:33)

    Oh, no, it’s just the time and energy it takes to do it. It drains me very quickly. Because you have to evaluate and analyze every line as you’re deciding what project it belongs to. And there’s a strategic way to do it in terms of who you normally deal with on each project, etc. etc. This chunk of time, calendar dates you’ve worked on it, etc. But, know,

    That might by the time I get to this tedious task, I’m not thinking about it strategically. ⁓ Yeah, I’m just dragging each individual line item into a little folder. ⁓

    So, ⁓ but yeah, like the cognitive deficits. gosh. mean, I’m working on a computer all day. I am definitely a corporate desk rat or mouse, you know, on the wheel. ⁓ And a lot of Excel spreadsheets and just a lot of very small print and sometimes I get to expand it. ⁓

    And it really is just trying not to, well, the job involves making as few errors as you possibly can.

    Bill Gasiamis (28:01)

    Yeah.

    Judy Kim Cage (28:02)

    ⁓ Now when I get tired or overwhelmed or when I overdo it, which I frequently frequently do, ⁓ I find out that I’ve made more errors and I find out after the fact usually. So nothing that’s not reversible, nothing that’s not fixable, but it still is pretty disheartening for a perfectionist type such as myself.

    Bill Gasiamis (28:30)

    Wow. So the perfectionism also has to become something that you have to deal with even more so than before, because before you were probably capable of managing it now, you’re less capable. yeah, I understand. I’m not a perfectionist by all means. My wife can tend to be when she’s studying or something like that. And she suffers from, you know, spending

    Judy Kim Cage (28:46)

    the energy.

    Bill Gasiamis (29:00)

    potentially hours on three lines of a paragraph. Like she’s done that before and I’ll just, and I’ve gone into the room after three hours and her, and her going into the room was, I’m going to go in and do a few more lines because she was drained or tired or, you know, her brain wasn’t working properly or whatever. I’m just going to go do three more lines and three hours later, she’s still doing those three lines. It’s like, wow, you need to get out of the, you need to get out. need to, we need to.

    break this because it’s not, it’s not good. So I totally get what it’s liked to be like that. And then I have had the cognitive fatigue where emails were impossible. Spreadsheets forget about it. I never liked them anyway. And they were just absolutely forget about it. Um, I feel like they are just evil. I feel like the spreadsheets are evil, you know, all these things that you have to do in the background, forget about it. That’s unbelievable. So, um,

    What was it like when you first sort of woke up from the initial stroke, got out of your unconscious state and then realized you had to deal with all of this stuff? I know for some time you were probably unable to speak and were you ⁓ trapped inside your body? Is that right or?

    Judy Kim Cage (30:19)

    I was in the ICU.

    I was paralyzed on the left side, so I was not able to get up, not really able to move much. ⁓ I was not speaking too much, definitely not within the first week. I was in the ICU for 10 days. ⁓ And yeah, I just wasn’t able to do much other than scream from the beam.

    ⁓ And then I, once I became more aware, I insisted that I could get up and walk to the bathroom myself. I insisted that I could just sit up, get up, do all the things that I had done before. And it being a right side stroke as well, you know, I think helps contribute to the overestimation or the…

    just conceitedness, guess, and this self-confidence that I could just do anything. Yes, absolutely. And I was told time and time again, Judy, can’t walk, Judy, can’t go to the bathroom, Judy, you can’t do these things. And I was in absolute denial. And I would say, no, I can, I can get up. And meanwhile, I would say that

    Bill Gasiamis (31:30)

    Delusion

    Judy Kim Cage (31:51)

    husband was so afraid that I was going to physically try to get up and fall over, which would not have been good. ⁓ And so, you know, there was, there were some expletives involved. ⁓ And, ⁓ and then eventually once I was out of the ICU, ⁓ I didn’t truly accept that I couldn’t walk until

    Bill Gasiamis (32:00)

    but.

    Judy Kim Cage (32:20)

    one of the PT students had put me into an exoskeleton and I realized that my foot did not move at all, you know, like a full five seconds after I thought I picked it up. And I said, wait, hang on, what’s going on here? And I said, ⁓ okay, I guess I have to admit that I can’t walk. And then I can’t, I can’t sit upright. I can’t.

    You know, and like you had mentioned, you know, I had lost the signals from my brain to my bladder. They were slow or whatnot. And I was wetting the bed, like a child at a sleepover. And I was pretty horrified. And that happened for, you know, pretty much my, pretty much all my time at Kratie, except I got the timing down.

    ⁓ eventually, which was fantastic. But then when I moved to post-acute, ⁓ then I had to learn the timing all over again, just because, you know, of different, rules being different, the transfers being different, and then, ⁓ you know, just ⁓ the timing of when somebody would answer the call button, et cetera.

    Bill Gasiamis (33:45)

    Yeah.

    Do you, what was it like going to rehab? I was really excited about it. I was hanging out because I learned that I couldn’t walk when the nurse said to me, have you been to the toilet yet? And I said, no, I hadn’t been to the toilet. We’re talking hours after surgery, you know, maybe within the first eight or nine hours, something like that. And I went to put my left foot down onto the ground. She was going to help me. She was like a really petite Asian.

    framed lady and I’m and I’m probably two feet taller than her, something like that, and double her weight. And then she said, just put your hand on my shoulder and then I’ll support you. So I did that. I put my hand on her shoulder, stepped onto my left foot and then just collapsed straight onto the ground and realized, ⁓ no, I’m not walking. I can’t walk anymore. And then I was then waiting.

    hanging out to go to rehab was really excited about that. ⁓ What was it like for you?

    Moyamoya Syndrome Stroke Rehabilitation Experience

    Judy Kim Cage (34:48)

    Initially, well, do you so you mean. ⁓

    Bill Gasiamis (34:56)

    Just

    as in like, were you aware that you could ⁓ improve things? Were you kind of like, we’re gonna overcome this type of stuff? Because you had a lot more things to overcome than I did. So it’s like, how is that? How do you frame that in your head? Were you the kind of person who was like, ⁓ rehab’s around the corner, let’s do that? Or were you kind of reluctant?

    Judy Kim Cage (35:19)

    It was a combination of two things. One, I had been dying to go home. I said, I absolutely, why can’t I go home? I was in the hospital for three weeks before we moved to the rehab hospital. And once we had done that, I was there basically for the entire weekend and then they do evaluations on Tuesday.

    And so I was told on Tuesday that I would be there for another at least four to six weeks. And so that was even before therapies really began. So there was a part of me saying, I don’t care, let me go home and I’ll do outpatient every day and everything will be fine. At least I get to go home. But then the other part.

    Bill Gasiamis (35:52)

    Thanks.

    Judy Kim Cage (36:11)

    said, okay, well, once I realized I was stuck and that I couldn’t escape, I couldn’t go anywhere, ⁓ I actually, I did love therapy. ⁓ I loved being in speech therapy, being in OTE, being in PT even, because my girls were fantastic.

    They were so caring, so understanding. They made jokes and also laughed at mine, which was even better. And when you’re not in therapy, especially on the weekends, you’re just in your room by yourself. And you’re not watching TV because that input is way too heavy. Listening to music.

    maybe a little bit here and there. ⁓ You know, all the things that you know and love are nowhere to be found, you know, really. ⁓ Yeah, absolutely. Yeah, yeah. And I get claustrophobic in the MRI, in the hospital, et cetera. yeah.

    Bill Gasiamis (37:14)

    Oscillating.

    Yeah.

    I was on YouTube, searching YouTube videos that were about neuroplasticity, retraining the brain, that kind of stuff, meditations, type of thing. That really helped me on those weekends. The family was always around, but there was delays between family visits and what have you that couldn’t be there that entire time. ⁓ So I found that very interesting. And you know, rehab was a combination of

    frustration and excitement, excitement that I was getting the help, frustration that things weren’t moving as quickly as I wanted. ⁓ And I even remember the occupational therapist making us make breakfast. And I wouldn’t recommend this breakfast for stroke survivors. I think it was cereal and toast or something like that. And I remember being frustrated, why are they making me make it? My left side doesn’t work. Like I can barely walk.

    I cannot carry the glass with the tea or anything like that to me. What are these people doing? They should be doing it for us. I wasn’t aware. I wasn’t aware that that was part of the therapy. I just thought they were making us make our own bloody breakfast. I thought these people are so terrible. And it took a while for me to clue on like, ⁓ okay.

    Judy Kim Cage (38:44)

    you

    Bill Gasiamis (38:52)

    They want me to be able to do this when I get home. ⁓ understood. Took a while. I’m thick like that.

    Judy Kim Cage (39:00)

    Fortunately, wasn’t made to cook until close to the end. And also during outpatient, I was tasked to make kind of a larger, you know, crock pot dinner so that, you know, I could do that at home. Meanwhile, the irony of it all is that.

    I can cook and I used to love cooking, but I don’t do it nearly as much as I used to. So that skill did not really transfer over. ⁓ I have Post-it notes up by the microwave that tell me right hand only because if I use my left hand, the temperature differential

    I will burn myself ⁓ without even realizing it or even reaching for a certain part of a pan that I think is going to be safe and is somewhat heat resistant. And I touch it and then poof, well, you know, get a burn. So there are post-it notes everywhere. There’s one by the front door that says, watch the steps, because I had a couple of times flown down them and gashed my knee.

    Bill Gasiamis (40:13)

    Yeah.

    Judy Kim Cage (40:26)

    And it’s amazing actually how long a Post-It note with its temporary stick will stay up on a wall.

    Bill Gasiamis (40:35)

    Well, there’s another opportunity for you there, like do a project, ⁓ a longevity of Post-it Notes project, see how long we can get out of one application.

    Judy Kim Cage (40:46)

    Yeah, well, this one actually, so I think it was three months after I had moved in, which would have been 10 months into my stroke recovery. And that’s when I fell down these steps. And that’s when I put up the Post-It note. it has been, a piece of tape has been added to it.

    but it only fell down, I think, a couple of years ago.

    Bill Gasiamis (41:18)

    Yeah. So 3M need to shift their entire focus. I feel like 3M. Yeah. I think 3M needs to have a permanent ⁓ post-it note application, but easy to remove. if I want to take it down, like it’s permanent once I put it up, but if I want to take it down, it’s still easy to remove and it doesn’t ruin my paint or leave residue.

    Judy Kim Cage (41:44)

    They do actually have that tech. have it for, they call it command. It’s what they have for the hooks for photos and whatnot. And then if you pull the tab and then release it, it will come off and leave the wall undamaged, but it will otherwise stay there for a long.

    Bill Gasiamis (42:04)

    Yes, yes, I think you’re right. Most of the time it works, yes. Okay, well, we’re moving on to other things. You’ve overcome a lot of stuff. You’re dealing with a lot of stuff. And yet, you have this disposition, which is very chirpy and happy, go lucky. Is it real, that disposition, or is it just a facade?

    Using Humor in Moyamoya Syndrome and Stroke Recovery

    Judy Kim Cage (42:29)

    No, no, it’s real. It’s real. ⁓ I think I’ve always ⁓ tried to make light of things. ⁓ Humors, probably my first defense mechanism. ⁓ And I think that helped out a lot ⁓ in terms of recovery. And also, ⁓ it put my therapist in a great mood.

    Also, because not many people did that apparently. You know, most people curse them off or, you know, were kind of miserable. And there were times when I was miserable too. Absolutely. But, but I probably took it out more on my husband than I did the staff. And he, and he would call, you know, I said, I was so mean to you, Rich. was so mean to you. And he said, yeah, you were nicer to the nurses than to me. And I.

    I apologized for it, but at the same time I’m like, yeah, but sometimes, bud, you are so annoying.

    Bill Gasiamis (43:33)

    You had it coming.

    Judy Kim Cage (43:34)

    Yeah. Why are you so overprotective? Why do you point out every crack in the sidewalk? Why do you know, you still say I have to stop to tie up my hair when we’re walking on the sidewalk, you know, because you’re not supposed to do two things at once. ⁓ Yeah. So I felt as though I would make jokes all the time. I when my left hand would start to regain function.

    I called it my evil twin because I didn’t even recognize that it was mine. But then I would give it a high five every time I started gaining function back. And I would say things like, yeah, hey, evil twin, congrats. Or ⁓ I would say, I guess I don’t have to clean the house anymore. I don’t have to use my left hand to dust. I’m not capable of doing it. So why do it?

    Bill Gasiamis (44:29)

    Yeah.

    Judy Kim Cage (44:30)

    And I’m like, let’s always look for the silver lining. And it would usually be a joke. But, you know, if you couldn’t make fun of it or think about the ridiculousness of it, then I think it would be easier to fall into a pit of despair.

    Bill Gasiamis (44:48)

    I agree with you and laughing and all that releases, know, good endo, good endorphins and good neurochemicals and all that kind of stuff really does improve your blood pressure. It improves the way that your body feels, you know, the tightness in your muscles and all that kind of stuff. Everything improves when you laugh and you have to find funny things about a bad situation to laugh at, to kind of dial down the seriousness of the situation. can

    you know, really dial it down just by picking something strange that happened and laughing at it. I found myself doing that as well. And I’m similar in that I would go to rehab and they would, you know, we would chit chat like I am now with you and would have all sorts of conversations about all kinds of things. And the rehab was kind of like the, the, it was like the vessel, you know, to talk shit, have a laugh. ⁓

    you know, be the clown of the rehab room. And I get it, everyone’s doing it tough, but it lightened the mood for everybody. You know, was, it’s a hard thing. You know, imagine it being just constantly and forever hard. And it was like, I don’t want to be that guy and wish they have fun as well. And, and I think my, my, my tough times were decreased as a result. Like, you know, those stuff, mental and emotional days, they, they come, but they go. then

    you have relief from them. And I think you need relief.

    Judy Kim Cage (46:23)

    Absolutely. Otherwise, just could feel perpetual and just never ending. ⁓ And why or how could you possibly survive feeling that way?

    Bill Gasiamis (46:39)

    Yeah. So who are you now? as in your, how does your idea of who you are sort of begin to shift after the initial acute phase and now six years in, almost seven years into your stroke journey?

    Finding Purpose After Stroke

    Judy Kim Cage (46:59)

    I think I am.

    I’m pretty confident in who I am, which is funny. ⁓ I ⁓ actually lean more into making more jokes or ⁓ lean into the fact that things don’t, they don’t have nearly the importance or the impact that you would otherwise think. ⁓ One of my sayings, I guess I say all the, you know, how they say don’t sweat the small stuff.

    my big stuff, like big stuff became small stuff, you know. So it would have to be something pretty big in order for me to really, really, you know, think about it. And a lot of the little things, you know, the nuisances in life and stuff, would usually just laugh or if I tripped or something, then I would just laugh at it and just keep moving on. ⁓ And I think, you know,

    It’s funny because some people will say, ⁓ gosh, like stop, you know, there is toxic positivity, right? And there’s plenty of that. And ⁓ I stay away from that, I think. But when I try to give people advice or a different outlook, ⁓ I do say, well, you you could think of it this way, you know.

    It’s not all sunshine and rainbows and flowers and, you know, care bears, but it is, you know, but it, but you can pull yourself out of a situation. You can try to figure out a way to work around it. You can, you know, choose differently for yourself, you know, do things that you love. You know, you’re only given a certain amount of limited time on the earth.

    So how do you want to spend it? And if you are on your deathbed, you know, would you have, do you have any regrets? You know, like you did read the books about, you know, that, ⁓ why am I forgetting? Doctors ⁓ that perform palliative care and, you know, they’ve written books about

    you know what people’s regrets have been after, know, once they are about to pass and you know, that not taking action was a regret. You know, like why didn’t I do this? Or why didn’t I do this? Why didn’t I try this? Like really, what would have been the downfall to trying something? ⁓ And I find that, you know, aside from just naturally being able to see

    things to laugh at or, or positive sides of things. ⁓ I tried, like, I wish that people could experience that without having gone through what we went through. ⁓ but that’s virtually impossible. I think.

    Bill Gasiamis (50:18)

    I think it’s impossible, totally, 100 % impossible because everybody thinks they’re doing okay until they’re not. You just cannot prevent somebody from going through something by taking the learning first. The learning has to come second.

    Sad as that is.

    Judy Kim Cage (50:39)

    ⁓ Well, and we all think we’re invincible to a large extent. ⁓ But ⁓ I think what I’ve been trying to do or me now, I’ve always, you know, volunteered in various ways, but now I take and hold extra value in being a mentor for other stroke patients.

    Bill Gasiamis (51:03)

    Yeah, yeah, that’s

    Judy Kim Cage (51:04)

    And for, you know, individuals that even just come up to me and talk about all of their medical problems, it doesn’t matter if it’s circulated or not, you know, it’s medically they’re like, there’s some white matter on my MRI, what do think I should do? I’m like, it’s not that simple of an answer. I think you should go to the doctor. Get on a list.

    Bill Gasiamis (51:29)

    Yeah.

    Your journey seems like you’re growing through this adversity, like as in it’s very post-traumatic growth type of experience here. Something that I talk about on my book, the unexpected way that a stroke became the best thing that happened. Not something that I recommend people experience to get to the other side of that, of course. But in hindsight, like it’s all those things that you’re describing.

    Judy’s Book: Super Survivor

    And I look at the chapters because in fact, you’ve written a book and it’s going to be out after this episode goes live, which is awesome. And the book that you’ve written is called Super Survivor. And indeed that is a fitting title. Indeed it is. How denial, resistance and persistence can lead to success and a better life after stroke. Right? So just looking at some of the chapters, there’s

    a lot of overlap there, right? And one of the chapters that there’s overlap in is the volunteering and purpose. I’ve got parts of my book that specifically talk about doing stuff for other people and how that supports recovery and how the people who said that stroke was the best thing that happened to them, the ones that I interviewed to gather the data, one of the main things that they were doing was helping other people, volunteering in some way, shape or form. And that helped shape their purpose in life.

    and their meaning in life. And it’s how I got there as well. It was like, okay, I’m gonna go and prevent stroke. I’m gonna go talk on behalf of the Stroke Foundation. We’re gonna raise awareness about what stroke is, how to take action on stroke, what to do if somebody’s having a stroke. And I started to feel like I gained a purpose in my life, which was gonna to not allow other people to go through what I went through. And then,

    With that came public speaking and then with that came the podcast and then the purpose grew and it became really ⁓ all encompassing. It’s like, wow, like I know what my mission is. I didn’t seek to find it. I stumbled across it and the chapter in my book is called stumbling into purpose because you can’t think it up. You just have to take action and then bam, bam, it appears. Like, is that your experience?

    Judy Kim Cage (53:53)

    ⁓ Well, so much of my identity had been wrapped up in my occupation. ⁓ And so when, you know, the stroke first happened, et cetera, but then as time has passed, ⁓ yeah, I’ve absolutely found more meaning in providing comfort to other stroke patients.

    whether it’s because they see me as inspiring that I was able to recover so quickly or that I was able to go back to work, you know, permanently. And just to give them hope, really. And ⁓ when I was in acute, I felt as though like,

    We do so much of the recovery alone ⁓ and there isn’t a ton of, you know, of course our therapists are fantastic and they’re, you know, they’re loving and they’re caring. But in terms of having to make it through, you know, certain darkness alone or, ⁓ you know, just feeling sorry for yourself even sometimes, or feeling like, hey, I can do everything, but nobody’s encouraging that.

    because they think it’s dangerous. ⁓ I had wished that, you know, there were more people who could understand ⁓ what survival and then recovery was, you know, truly like. And so I had read that in a number of books before hearing people tell me their stories in person because

    Emotionally, I absorbed too much of it. ⁓ I wanted to, I think I passed that five-year survival mark of the 26.7%, which I know varies for everybody. ⁓ at the same time, I said, wow, I did, I made it to the other side, I beat these odds. I think I wanted to keep it secret from all the people I worked with.

    which I still have actually, it won’t be for too much longer. ⁓ But ⁓ just being able to share that and to be vulnerable and to say all the deficits that I have and what I have overcome, ⁓ I think it’s also given people some hope that they can, if she was able to do it, then maybe it isn’t as tough as I think it is.

    Bill Gasiamis (56:43)

    Anyone can. Yeah, I love that. That’s kind of my approach to, you know, I’m just a average, humble, normal, amazing guy. You could do it too. You know, I could, I could teach you to what you need to do is learn. ⁓ but that’s true. It’s that it’s that we are, I get, I get people come on the podcast going, I’m so nervous to meet you. You’re on the, I’m on your podcast.

    Dude, you don’t know who I am. Like if you think I’m the podcast guy, you’ve got no idea. I’m in the back of my, in my garden, in a shed. what was something that’s meant to be a shed that looks like a studio and amazing and all this kind of stuff. Like, dude, I’m just.

    Judy Kim Cage (57:29)

    would not have known if you hadn’t told me.

    Bill Gasiamis (57:32)

    That’s right, because looks can be deceiving and that ideas that we get of people are just, you know, they’re just not accurate until we get to spend time with people and understand them. And I always try and play down who I am so that people can see that I am just a regular guy who went through this and had no, no equipment. had no ⁓ knowledge. had no skills overcoming learning. Like I just, I picked up what I needed when I could just so that I can stumble through to the next

    hurdle and stumble through that one and then keep going. I really want people to understand that even the people who appear to be super fabulous at everything, like they’re just not, nobody is that, everyone is just doing their best they can. Even the guy who’s got more money than you, a bigger house, whatever, a better investment, all that stuff, they’re all faking it until shit hits the fan and then they’ve got to really step up to be who they are.

    You know, that’s what I find. But attitude, mindset, ⁓ approach, know, laughing, doing things for other people all help. They are really important steps, you know. The other chapter that kind of.

    made me pay attention and take note ⁓ was you talk about the night everything changed, complicated medical history, lifesavers, volunteering and purpose, the caregivers, ⁓ easing back into life, which I think is a really important chapter, returning to work, which is really important. then chapter nine, life after stroke continued. That kind of really

    is something that made me pay attention because that’s exactly what it is, right? It’s life after stroke. It’s like a continuation. It’s a never ending kind of ⁓ unattainable thing.

    Judy Kim Cage (59:27)

    It just keeps rolling on. doesn’t stop. You know, even if you’ve gone through a hardship and overcome it, it doesn’t mean that life stops. You’ve got to keep learning these lessons over and over and over again. Even if you don’t want to learn them, however stubborn you are. ⁓ And I, you know, I one thing that I had written about was that I had resented ⁓

    you know, what I had gone through for a little while. I said, why do I still have to learn the same lessons that everybody else has to learn? You know, if I’ve gone through this kind of transcendental thing, why do I still have to learn, you know, these other things? But then I realized that I was given the opportunity ⁓

    from surviving, was given another chance to be able to truly realize what it was like to be happy and to live. And I’d never, I mean, I had, I had been depressed, you know, for an anxious for years. And, you know, I’ve been in therapy for years and, ⁓ you know, it really wasn’t truly until kind of getting this push of the fast forward button

    on learning lessons that it truly became happy, like true, true happiness. And I said, wow, that was the gift. And then to try to pass that on.

    Bill Gasiamis (1:01:10)

    It’s a pretty cool life hack. A shit way to experience it, but a pretty cool life hack.

    Judy Kim Cage (1:01:15)

    Yeah, yeah, yeah, definitely don’t I don’t recommend it I don’t

    Bill Gasiamis (1:01:20)

    Yeah. You get the learning in a short amount of time instead of years of years of wisdom and developing and learning and overcoming, which you avoided up until your first, you know, 38 years. And then, you know, you then, and then you kind of all of a sudden go, okay, well, I really have to buckle down and do these, ⁓ these modules of learning and I’ve got no choice. And I was the same. ⁓ and I have my days, I have my

    Good days, bad days, and I even recently had a bit of a day where I said to my wife, I got diagnosed with high blood pressure, headaches, migraines, a whole bunch of stuff, and then just tomorrow, I’m I’ve had enough. Why do I need to to be diagnosed with more things? Why do I need to have more medical appointments? Enough, it’s enough. I need to stop this stuff. It’s not fun. And then it took me about half a day to get over myself and go, well, I shouldn’t be here, really. Technically,

    Somebody has three blades in the brain, you know, I don’t know, maybe 50 years ago, they weren’t gonna make it. So now you’ve made it also high blood pressure. If you had high blood pressure 50 years ago, there was nothing to do to treat it. It was just gonna be high until you had a heart attack or ⁓ a brain aneurysm burst or something. And it’s like, I get to live in a time when interventions are possible and

    it is a blip on the radar. Like just all you do is take this tablet and you’re fine. Not that I revert to give me the tablet solution. I don’t, I’m forever going under the underlying cause. I want to know what the underlying cause is trying to get to the bottom of all of that. But in the meantime, I can remain stable with this little tablet and ⁓ decrease the risk of another brain hemorrhage. So it’s cool, know, like whatever.

    And that kind of helps me get through the, why me days, you know, cause

    They’re there, they come, they turn up, especially if it’s been one day after the next where things have been really unwell and we’ve had to medical help or whatever. When it’s been kind of intense version of it, it’s like, okay, I don’t want any more of this. So I get the whole, I’ve experienced the whole spectrum in this last 13, 14 years. We’re coming up to, I think the 20th or 21st, I think is my,

    maybe the 25th of my anniversary of my brain surgery. Jeez, I’ve come a long way. It’s okay. It’ll be like 11 years since my brain surgery. A lot of good things have happened since then. We got to live life for another 13 years, 11 years. I keep forgetting the number, it doesn’t matter. Yeah.

    Judy Kim Cage (1:04:17)

    Mine will have been my 17th ⁓ anniversary of my brain surgery ⁓ will be in January, sorry, in December. And then the seventh anniversary of the stroke is in January. So lot of years.

    Bill Gasiamis (1:04:33)

    Yeah, yeah. A lot

    of years, a lot of years, great that they’ve happened and I’m really happy with that. Keep doing these podcasts, makes me forget about myself. It’s about other people, so that’s cool. know, meet people like you, putting out awesome books. And when I was going through early on, there wasn’t a lot of content. It was hard to get content on stroke surviving, recovery, all the deficits, all the problems. That’s part of the reason why I started this.

    And now I think I’ve interviewed maybe 20 or 30 people who have written a book about stroke, which means that the access to information and stories is huge, right? So much of it. ⁓ Your book comes out in early December. Where is it going to be available for people to buy?

    Conclusion and Final Thoughts

    Judy Kim Cage (1:05:20)

    It is currently available to download ⁓ through the Kindle app and through Amazon. The hard copies will be available to order through Amazon and hopefully in other booksellers, but that’s TBD.

    Bill Gasiamis (1:05:39)

    Yeah, well, we’ll have all the current links by then. We’ll have all the current links available in the show notes. ⁓ At the beginning of this episode, I would have already talked about the book and in your bio when I’m describing the episode and who I’m about to chat to. So people would have already heard that once and hopefully they’ll be hearing it again at the end of the episode. So guys, if you didn’t pay attention at the beginning, but now you’re at the end, it’s about to come. I’m going to give all the details.

    Judy Kim Cage (1:06:07)

    stuck

    around.

    Bill Gasiamis (1:06:09)

    Yeah.

    If you stuck around, give us a thumbs up, right? Stuck around in the comments or something, you know? ⁓ Absolutely. Thank you so much for joining me, reaching out, sharing your story. It is lovely to hear and I wish you well in all of your endeavors, your continued recovery. yeah, fantastic. Great stuff. Thank you so much. Thank you.

    Well, that’s a wrap for another episode. want to thank Judy for sharing her story so openly. The way she spoke about denial, rehab, reality, cognitive fatigue and rebuilding identity is going to help a lot of people feel less alone. If you’re watching on YouTube, let us know in the comments, what part of Moyamoya Syndrome stroke recovery has been the hardest to explain to other people for you? Was it the physical symptoms or is it the invisible ones?

    like fatigue and cognition. And if you’re listening on Spotify or Apple podcasts, please leave a review. It really helps other stroke survivors find these conversations when they need them most. Judy’s book is called Super Survivor, How Denial Resistance and Persistence can lead to success and a better life after stroke. And you’ll find the links in the show notes. And if you want more support from me, you can

    Grab a copy of my book at recoveryafterstroke.com/book, and you can become a Patreon supporter at patreon.com/recoveryafterstroke. It genuinely helps keep this show alive. Thanks again for being here. Remember you’re not alone in this recovery journey and I’ll see you in the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

    Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical

    and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor

    or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk.

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    The post Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis appeared first on Recovery After Stroke.

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