Recovery After Stroke

Personality Changes After Stroke: How Ben Sautter Discovered His “Hyde” and Became a Better Man

 For nearly a decade, Ben Sautter carried a story he didn’t fully understand. He was a respected superintendent for the City of Helena, a devoted father, and a man his colleagues trusted. He was also someone who, years earlier, had been convicted of drug trafficking and spent over a year in prison, a period he now describes without shame or remorse, feelings he says he simply didn’t have access to. “I never felt guilty about doing anything,” he told me. “I never had no shame, no remorse. I still don’t.”

Then, on a morning in 2017, Ben woke up with his left leg buzzing like an electrical current, from his hip to his toe. He dismissed it as sciatica, worked out to try to shake it off, and drove himself to a doctor’s appointment while slurring his words. By the time he reached his physician’s office, she recognized what was happening immediately: Ben was in the middle of a stroke.

What followed wasn’t just a physical recovery. It became the beginning of a profound psychological reckoning one that reshaped how Ben understood himself, his marriage, and the two very different versions of the man he’d been his entire adult life.

What Personality Changes After Stroke Can Actually Look Like

When people talk about the effects of stroke, the conversation usually centers on physical deficits: weakness, speech difficulty, mobility. Less discussed but just as real for many survivors are the personality changes after stroke that surface in the weeks, months, and even years that follow.

For Ben, this didn’t show up as a dramatic before-and-after moment. It took roughly six months before he began to notice his own cognitive shifts, and years more before he could name what he was experiencing. “I feel like two different people,” he eventually admitted to himself, a recognition that came into sharp focus only after his wife, Helen, described what she called his “Jekyll and Hyde” pattern: a caring, grounded version of himself, and a sharper, more reactive one that could surface without warning, particularly under emotional pressure.

Ben also discovered something else in the process something many survivors don’t expect. Before his stroke, he says he operated almost entirely on three emotions: happy, sad, and angry. It wasn’t until his wife introduced him to a “feelings wheel” years after his stroke that he realized how narrow his emotional range had actually been. That flattened emotional landscape, paired with a striking absence of guilt or fear around risky behavior earlier in his life, points to something researchers increasingly recognize: strokes can affect not just movement and speech, but emotional regulation, impulse control, and self-awareness, particularly when the affected regions touch circuitry involved in processing feeling and consequence.

The Unexpected Overlap With PTSD

One of the more striking parts of Ben’s story is how he came to understand his own symptoms. Watching a 60 Minutes segment on a military veteran with PTSD, Ben recognized his own thoughts, words, and behaviors reflected back at him patterns his psychologist at the VA had already been treating with PTSD-informed techniques, without Ben fully grasping why. “That’s when I realized my family suffered the stroke as much as I did,” he said.

This overlap isn’t unusual. Post-stroke psychological symptoms hypervigilance, emotional reactivity, difficulty processing what happened can closely resemble trauma responses, even in survivors who never experienced combat or acute crisis in the traditional sense. Recognizing this early, and getting connected with the right kind of psychological support, can make a meaningful difference in how survivors and their families move through recovery.

Turning Reflection Into Change

What makes Ben’s story remarkable isn’t just that he noticed these changes; it’s what he did with them. Nearly ten years after his stroke, and after years of separation from his wife, Ben sat down and wrote his memoir, Mr. Hyde and Me, in just ten weeks. “I called this therapy on steroids,” he said. “Writing this book was incredibly therapeutic.” The process gave him a framework to finally understand the dual nature he’d lived with since childhood, shaped, he believes, by an upbringing where feelings were dismissed, and risk-taking was treated as fun rather than dangerous.

“That guy that I was, that guy’s gone. I am not going to be that guy ever again.” — Ben Sautter

Today, Ben and Helen are reconciled. He describes himself as calmer, more deliberate, and a better listener than he was before his stroke, not despite the personality changes it triggered, but in some ways because of the self-awareness they eventually forced him to confront. As he put it plainly: “We would not be having this conversation if I hadn’t had a stroke.”

If You’re Noticing Changes in Yourself or a Loved One

If you or someone you love has experienced personality changes after stroke emotional flatness, increased irritability, impulsivity, or a sense of feeling like “two different people” you’re not imagining it, and you’re not alone. These changes are a recognized part of many stroke recoveries, and they respond well to the right combination of professional support, honest communication with family, and time.

Ben’s full story, including his path through incarceration, his stroke, and the years-long process of understanding his own mind, is available in The Unexpected Way That A Stroke Became The Best Thing That Happened, where survivors share the tools that helped them navigate recovery, available at recoveryafterstroke.com/book.

If this show has helped you, you can support it at 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.

Jekyll, Hyde, and the Stroke That Changed Everything: Ben Sautter’s Story (Interview)

Bill’s Book: The Unexpected Way That a Stroke Became the Best Thing That Happened

Support Bill on: Patreon

Bill’s one-on-one coaching program: Momentum

Highlights:

00:00 Introduction – Personality Changes After Stroke

03:51 Realizing Something Was Wrong

12:51 Discovering His Dual Personality

21:05 Living With Only Three Emotions

31:50 Where the Pattern Began

39:55 Writing the Memoir That Helped Him Understand Himself

50:37 Stroke as a Catalyst for Change

Transcript:

Introduction – Personality Changes After Stroke

Bill Gasiamis (00:00)

Welcome back to Recovery After Stroke. I’m Bill Gassiamas, and today’s guest is Ben Sautter, a stroke survivor from Montana who in 2017 suffered an ischemic stroke caused by a carotid artery blockage. Ben was in his mid-50s working as a superintendent for the city of Helena when he woke up one morning with his leg buzzing like it was electric and his speech starting to slur.

But this episode isn’t really about the stroke itself. It’s about what the stroke uncovered. Ben spent decades living what he now calls a Jekyll and Hyde existence, including a period of incarceration for drug trafficking that he says he felt no guilt over at the time. And after his stroke, that started to change. We talk about emotional flatness, PTSD like symptoms he didn’t recognize until years later.

The marriage he nearly lost and the memoir he wrote in just ten weeks that finally helped him understand himself.

Before we get into it, if you haven’t already, check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, over at recoveryafterstroke.com/book. And if this show has helped you, you can support it at Patreon.com/recoveryafterstroke, and you can help me keep it going so that we can get to one thousand episodes.

If you’re feeling stuck in your recovery and want more structure and one-on-one support, I also offer a coaching program called Momentum. You can find out more at recoveryafterstroke.com/momentum. Now let’s get into it. Here’s my conversation with Ben.

Bill Gasiamis (01:42)

Benjamin Sautter welcome to the podcast.

Ben Sautter (01:45)

Thanks much for having me.

Bill Gasiamis (01:49)

Can you tell me a little bit about what life was like before twenty seventeen and the stroke?

Ben Sautter (01:55)

Well, I was on it back then before the stroke. I was had a job that I really enjoyed. I was working for the city of Helena as a superintendent of streets and traffic division. And life was going really good for me there. And then it kind of came to a an abrupt halt.

Bill Gasiamis (02:15)

what was life like as far as what kind of work were you doing? What was family life like?

Ben Sautter (02:23)

Well, our family was pretty close at the time. We have two children and we were busy, we were really close, busy traveling. We had a motor home, we had lots of fun. we hunt and fish, a lot of outdoor activities here. We we have a little cabin that we spend all our weekends at. if we weren’t traveling, that is. so

Home life was pretty good. My wife and I were struggling a bit before I had my stroke. but we were a close family. And and work was good. I I I’d progressed up into mid-level management and I I had great great people, great staff underneath of me, and we got a lot of good work done for the city and had a lot of fun at work.

work was going good. Everything was going pretty good.

Bill Gasiamis (03:25)

Was there any sign that something was amiss with your health that perhaps there was something looming that wasn’t going to be fun?

Ben Sautter (03:36)

No, I was I was in great shape. I had had no signs of anything coming. so it was yeah, it was out of the blue. The stroke was out of the blue.

Realizing Something Was Wrong

Bill Gasiamis (03:51)

What was that day like? Was there any kind of deficit deficits that you experienced that gave you a hint that something was going wrong? Or how did it evolve?

Ben Sautter (04:00)

Well, I woke up in the morning to go to work, I knew something was funny and I couldn’t figure it out. I think when I woke up, I got I get up early and to get in before my first crew was in the mechanics were in at six. So I was in before that. But when I woke up my left leg was just buzzing like it was electric from my hip.

To my toe. And I didn’t comprehend. I was thinking it was like a sciatic something because I had a little sciatic pain from time to time in my right side, even though I knew this wasn’t the same, but I didn’t have the cognitive awareness of what was going on. And so I I worked out in the middle of it thinking maybe it was.

muscles in my back and if I exercise did go away and and it didn’t when I and I went on into work and my my mechanics were nervous. I I was starting to slur my words and and I I kind of felt it. I a I asked him I think if I was slurring my words

And they just kind of smiled at me. And I went back up to my office and then another one of my other supervisors came in and he sat down. He could tell something wasn’t right with me. And then he left and they were all getting together to come and check me out, and I left. I I had a a meeting, or not a meeting.

I had a doctor’s appointment out at the VA Fort Harrison at for 7 30 that morning. And so I was I was late and I think I d I think my doctor called me and I was on the road driving out there and she I told her kind of things were funny and what was going on.

And she said, Well, you need to get out here, get a ride out here. I said, Well, I’m driving. She said, God, no. I th she pretty well could tell she thought I was having a stroke right there. And I drove out there, I went upstairs to see her and they took me right down to the emergency right there.

Bill Gasiamis (06:39)

And

Did they immediately diagnose that you were having a stroke?

Ben Sautter (06:47)

We’re getting a little blurry on me right there. I

I I don’t really remember what they thought right at the time, right at that moment when I was in the emergency. I know a couple hours later they came to me and there was no doubt about it. They they knew then they had speech therapists in and a neurologist in the room and that’s so it took a couple hours to for a

sure diagnosis that I was in the middle of a stroke. Best I remember.

Bill Gasiamis (07:27)

Hm. It’s pretty common that

yeah, pretty common that you’re not gonna remember exactly what was happening at that time. Things were compromised. That makes complete sense. how long before well rather at some point you’re told that you had a stroke, how do you take that information?

Ben Sautter (07:48)

I don’t know that it it didn’t go over my head, but I I I wasn’t devastated. I and because I wasn’t I I was familiar with stroke, my father’d had strokes and he’d been paralyzed and lost his speech, so his were very severe. So at the time I I wasn’t feeling that I was that impacted by it.

I knew some things were going on, but looking back I can tell I just didn’t have the the awareness of what was happening to me, even though I knew it. but it it just didn’t feel serious to me.

Bill Gasiamis (08:34)

It didn’t sink in, perhaps.

Ben Sautter (08:36)

yeah, I w I would say so. Certainly not the gravity of it. and it actually it took quite some time. I’d say at least six months, really, before I started being aware of my cognitive deficiencies and and wondering.

asking myself questions even though within a week’s time I was at VA Salt Lake to have surgery on my carotid artery. So all that happened and I was still it’s not that I was in denial. Well, I didn’t think I was, but now looking back, I that could have been what it was.

But but I was aware. I knew it happened. Gosh, I had surgery. I I understood it all. I saw the MRI. I saw the mark on my brain. I had the surgeries I said. but I it it just the seriousness of it didn’t sink into me. Cause within

Bill Gasiamis (09:50)

Mm.

Ben Sautter (09:50)

two weeks, my doc cut me loose, my surgeon, I was up in the woods hunting.

Full tilt. They gave me they said, go ahead. So that kinda helped me believe that I the word what what I said, I dodged a bullet is how I put it. And even though I didn’t really dodge the bullet.

Bill Gasiamis (10:19)

so you said that you had about six months where you kind of had no real awareness or your cognition was impacted. What obviously your cognition was was impacted, but what other deficits did you have?

Ben Sautter (10:40)

I would just say the cognition, the physical part, I had that numbness in my leg. I didn’t even have a limp from it, but my whole leg f well, it’s still somewhat for for years was like I say, like it w my whole leg was stuck in a light socket, just buzzing like electric from my hip to my toe, and and that lasted a long, long time.

my leg got real heavy. I had to like I say, I could it didn’t show that I was limping or anything, but I had to work at that to not let it show. I had to make sure I high stepped kinda so my toe didn’t drag and I didn’t trip. I had to be very well aware of that to make it look like I was okay.

But but really physically it didn’t show.

Bill Gasiamis (11:43)

Your introductory email to me about joining me on the podcast was interesting.

what you had seems to be a catalyst for some change in your life. Like what occurred to you, the stroke, the hospitalization, the challenges that you had to come seems to be a catalyst for change in your life. Before the stroke in twenty seventeen, you said your wife and yourself were going through some difficult times.

but you were busy at work, you had a a whole bunch of other things going on. but there’s another side of you, there was another side of you at some stage that you were living a life that you were living that’s not quite the run of the mill standard lifestyle. Tell me a little bit about that. And was that lifestyle that you’re gonna to tell us a little bit about now? Was that something that you lived until your stroke?

Discovering His Dual Personality

Ben Sautter (12:36)

I’m living that still right now. that dual personality. And after the stroke, it was it might have taken a couple of years of me looking back. I was finally looking back, wondering who that guy was, that other guy. I I would say to myself.

I feel like two different people. And it wasn’t until after the stroke, I think, that I really asked that heart or asked that question, or said that to myself, that I feel like two different people. And that came from

questioning the things I did when I was younger. I was pretty wild guy and I did things that didn’t seem like me, yet I know I did all those things. Well hell I I got arrested, went to prison. So I know I was doing stuff that I shouldn’t have been doing. But back then it was

Pretty easy to do. And I it it wasn’t, it didn’t feel like me doing it. so after the stroke, I really started asking questions, trying to, trying to look back to understand. And I never got that understanding until I wrote that book last year. And then it all just poured out.

And I could see the dual personality and and and I still am that dual guy. My wife is able to recognize that more now, and when she s tells me about it, I can really see it when she explains it, especially what I say. I I say things

I say things that I don’t mean that aren’t me, that I don’t understand why I say those things. It’s and I named it Hyde. And it Hyde speaks different than I do, than Jekyll.

Bill Gasiamis (15:11)

How old were you when you ended up in prison and how old were you when you got out?

Ben Sautter (15:16)

I was thirty two when I got arrested and I was only out for like thirteen months so I was thirty thir about I was thirty four when I got out.

Bill Gasiamis (15:28)

And the stuff that you went in for, what kind of things were you doing that ended you up in prison?

Ben Sautter (15:38)

I was I got arrested for drug trafficking.

Bill Gasiamis (15:42)

And at the time was there a certain amount of disassociation from the behavior? And did you kind of find yourself doing things that you just weren’t, what was it, maybe like connected to logically? How how did you find yourself being in a situation that you now describe as this was not?

U or it was another U.S.

Ben Sautter (16:14)

That’s good question.

I have to say I don’t really understand yet where I was back then. It I I had to that it had to be that disassociation because I was a legitimate guy. I worked, I had jobs, I had good respect from people. I I was a legitimate man all day long every day. And I just slip out and

Did stuff.

I I d I had no feelings about it. I I wasn’t I never felt guilty about doing anything. I never had no shame, no remorse. I still don’t. I don’t feel those feelings. They just aren’t in me. Even after the book, after writing that and starting to understand that I don’t have those feelings, which I still don’t, but way back then.

I didn’t give a s I didn’t give a first thought to any of that illicit stuff I was doing. It was opportunity and I just went and did it. Didn’t give it a thought.

Bill Gasiamis (17:31)

Got it. And then when you ended up coming out of prison, did you go back onto the straight and narrow? Did you still double? How was life after that? Because it was thirty years almost, you know, between your incarceration and then your stroke. So I I’m just trying to set the scene just so I can ask you the next question later on about the stroke. So what was life like after the incarceration?

Ben Sautter (17:56)

So and I’ve been thinking about that a lot lately and writing about that. And that I had to make a very conscious decision. And and the way I put that, prison didn’t rehabilitate me. I had to make that decision that okay, I want to go back there. I need to I need to watch I need to watch over myself.

and keep myself out of trouble, which all those big crimes were the problem, but little things, I I went hunting, I was a poacher, I I trespassed, those types of things. I was very careful not to be caught speeding in a car or any of that, drinking and driving.

a little bit I’d find myself doing that and that was a difficult thing to overcome of to quit drinking and and so I was I’d find myself drunk behind the wheel and I I finally again made a conscious decision decision but it took a little time to work out of that to finally draw a line in the sand. In fact it wasn’t

until a year or two after I got married that I finally just quit drinking completely. And that was good. That was a good move. so it was w I can’t say that it was a struggle, but it was risky for me out of prison that I didn’t get caught at those littler, less severe law breaking.

Bill Gasiamis (19:53)

Yeah.

Ben Sautter (19:54)

Yeah.

Living With Only Three Emotions

Bill Gasiamis (19:55)

So what I’m hearing here is a you’re you’ve described yourself as Hyde. There’s a Jekyll somewhere here as well. and and also in your description of your behaviour and the way that you weren’t associated with it, or you have no feeling about something, or you know or you have no connection to what it meant when you were breaking the law.

It sounds a little bit sociopathic and it sounds like perhaps there was a some kind of a what people might describe as a psych as a psychiatric kind of challenge or issue there. Has that ever come up in a conversation with anybody?

Ben Sautter (20:41)

No, more the compartmentalization dissociation. I lived with and I didn’t know this until twenty twenty one or twenty two, I lived with three emotions, happy, sad, and angry. That’s and and I learned that when my wife brought out a feelings wheel. And she brought out this feelings wheel and sh she’s saying, tell me which

Where you land on some of these, and I thought, well, happy and sad and and angry. And that’s about as far as I went with it. And once in a while I’d feel a little something, but not really very much. So so that’s when I learned I was operating on three emotions. That’s all I ever had. So that really showed the compartmentalization and the disassociation right there.

psychopathic or psychopath has never come up even with my psychologist. she never identified that but I just saw her for the first time since I read wrote the book a few weeks ago and gave her a copy of the book and she was a little bit wide-eyed and surprised.

at the book and she’s reading it. So what kind of conversation we’re gonna have now will be really interesting to go back and see her. But but answer to your question, no, psychopath, no, just compartmentalizing

Bill Gasiamis (22:26)

Yeah, so sociopath, not psychopaths. Yeah.

Ben Sautter (22:28)

Sociopath, I’m sorry. I’m sorry. Yeah.

Bill Gasiamis (22:31)

Sociopaths tend to be people who in the moment can’t connect with the behavior, good, bad, indifferent, and then later on have the ability to kind of notice that the behaviour was inappropriate in some way, shape, or form, and kind of have well, maybe not regret, but kind of some understanding of

behavior being inappropriate. Whereas psychopaths are completely different, like they have no empathy, no nothing, right? There’s nothing there. So that’s a that’s kind of not where where where I was headed. I wasn’t asking

Ben Sautter (23:06)

Yeah.

Bill Gasiamis (23:07)

that. But it’s interesting that you describe these two separate, separate versions of yourself. it’s not uncommon to how I describe myself after the stroke, but I didn’t have a Jekyll and Hyde streak in me. But I had a line in the sand. The stroke seemed to

take my brain offline for a little while and it allowed me to connect with other parts of my body. Specifically, I talk about connecting with my heart and it made me more empathetic and more able to kind of access what what my values were rather than what my head thought was the right thing to do or what what my head thought was the right approach or the right way to go about things. So

it seems like the stroke has played some kind of a similar role in your ability to reflect on your past in a different way, th in a more associated way compared to what you had done before. Is that accurate?

Ben Sautter (24:07)

Absolutely. we talk about the stroke not being all bad for me because I’ve become far more aware. and that awareness is big, not just of my past and who I was, but being able to listen so much better and be more aware of what I say, think, and do. much more so.

So so yeah, the stroke has I the stroke has been good for me in in a lot of ways, cause causes some of those difficulties without a a doubt, but I think my wife would agree that I’m a better person, despite the change in moral compass after the

my incarceration, but I still was a Jekyll and Hyde, and I still am today. I she can see me come in and out of it much quicker than I have any idea. not necessarily on a daily basis, on an hourly basis and in conversation. She can see by what I say.

Bill Gasiamis (25:27)

what’s better about being able to listen more? you said that you you were able to hear more or pay attention better in a conversation, for example. Why is that better?

Ben Sautter (25:37)

The understanding, the understanding of the person I’m talking to, and the understanding of myself and and listening listening to hear rather than listening to respond. So though that’s really that’s big for me because I used to be so quick. I’d hear something, I could make decisions, I was very impulsive. I’ve I’ve really

rein that in to calm myself down and and just listen better, be slower, more deliberate, more purposeful. All all all of those things are much better for me. In fact, I didn’t have any of that before before the stroke. I was full tilt on everything. I I thought I did. I thought I was very considerate, concerned, and listened, but in comparison, no.

That wasn’t me.

Bill Gasiamis (26:37)

I it you said it’s better for you. Like why how is it better for you? How has it improved your life?

Ben Sautter (26:44)

I’m not banging heads so much. I I I let people have their thoughts, their opinions, and and I don’t take offense to to that. So everything’s calmer and and I I just don’t have the head banging I used to have.

Bill Gasiamis (27:04)

Why is it important for people to have their opinions and their thoughts?

Ben Sautter (27:08)

Well, I’m right and you’re wrong. Isn’t that what it’s all about? Everybody wants to be right and and think that that everybody should agree with them. That’s that’s how I see it now. It’s like, and if yeah, I’m right and you’re wrong. And I that I don’t do that anymore.

Bill Gasiamis (27:31)

Got it. Got it. This part of you that your wife still sees that you’ve kind of been able to rein in, like is it a sinister side of you that she sees? Is it the conniving side of you? Is it the the the one that’s possible to be led astray? Which side of it does she still see that kind of attends these conversations with your wife?

Ben Sautter (27:55)

I d I I’m not sure how you how you name this.

perfect example is if I I d slip up, do something wrong and Helen will bring my attention to it, I’ll say, Well, I just did that to see if you’re paying attention. So I I try to deflect things. I I have that I definitely the inferiority or or or and on myself. We’re all our own worst critic, of course, and and I I really feel

self conscious. I know my deficiencies and

I I go back and forth. I I know my deficiencies and I live with it. I’m okay with it. But sometimes if someone says something to me, Helen, one one time it’s okay and I get by it, one time it’s like it hits and it hurts. And and I I react, I try to deflect, I say things, hide comes out of me and and says things like to hurt back.

And and so I’m and she’s getting better about not letting me do that. And the sooner she says something now, if she says something right away, I go, yeah, sorry, I did say that. Whereas before I didn’t remember saying things and I would say that. She’d say, You she’d wait too long and then tell me you said something. Well, I wouldn’t say that, I don’t think those things.

That’s Jekyll saying, I I I don’t even think that. I I I didn’t say that. You took it wrong. Now I’m more believing that Hyde would say those things and and if she comes back quick enough and I can I’m right there. I’m like, yes, yeah, you’re right. And I I can apologize, but I’m getting better and better at not saying those things.

and and catching myself now, which is big, to to stop it before it happens. So I I as we talk through this, I am starting to be more aware of Hyde, what he says, what he thinks, and certainly what he does. I I conquered that long time ago. But what he says and what he thinks, I’m starting to catch that before I go wrong.

Bill Gasiamis (30:36)

You I’m gonna make a lot of assumptions now. You seem very unassuming as a sixty-three year old man who lived a dual life, you know, went to prison and all that. You know, you you wouldn’t pick that up from meeting you on a Zoom call or in person per se, right? and often often people who kind of live double lives, etc.,

There’s a an underlying cause, something that happened earlier on in life that caused them to take on a certain persona or to be a certain way or to get through a certain difficult time in their upbringing or the circumstances by which they found themselves in. Did you have a origin story? Was there something that you can think back at that perhaps that led you to take the on another persona in certain situations, or is it just how you’ve always been?

Where the Pattern Began

Ben Sautter (31:33)

The way it came out in writing my memoir, it was from when I was little, really little, and there was two things about it. We didn’t talk about feelings. Yeah, when you get hurt, you d you don’t you don’t cry about it, or you just don’t cry about it, you don’t feel anything. And my dad was a risk taker.

And he was so a lot of fun. He taught me some of my worst habits, if not most of them. And and I followed in his footsteps. Risk was inside exciting. Terror was exciting. Being scared was fun. That’s how my dad taught me. And you add that with no feeling, no fear. you just it was easy I said earlier.

It was really easy to go do those things shouldn’t do. It was fun and and there was money in it and calculated risks. no problem. It was just no problem.

Bill Gasiamis (32:46)

Your wife seems to have found something in you that was likable enough to kind of overlook that stuff or or to not see that stuff as being a real issue. Wha what do you think it is that she saw in you that kind of had her be okay with hanging out with a guy who had been incarcerated and perhaps had these tendencies to switch between these two personalities?

Ben Sautter (33:13)

Well, the incarceration I told her I thought I told her everything. I told

Bill Gasiamis (33:18)

Ha ha.

Ben Sautter (33:19)

her I told her enough for me to think I told her everything. And she felt that she saw me pay my dues and

She didn’t know a lot up until this last year. she didn’t see the dual side of me. Even though we struggled, she thought it was just me being me. Now it’s so much more clear. And and she’s the one that came up with the Jekyll and Hyde when I was halfway through the book. And stories were coming out she’d never heard before.

And that’s when one day she said, You’re like a Jekyll and Hyde. And that really changed the framework of my story. And and it showed me or helped me understand myself, the the dual personality. It still took a little bit to build it through the book to get a full understanding of it and draw a clear picture, but

By the time I was done with the book, it was easy to see the dual personality.

Bill Gasiamis (34:42)

Did your wife what did she like about you though? Like there was s she’s been around for a little while by the sound of it.

Ben Sautter (34:52)

Yeah, we’ve been together over thirty years. you’d have to ask her that. I I think well, I’m a fun guy. I I was caring and I I that Jekyll guy’s pretty decent fella. You know, I’ve I’ve successfully in business and I’m I’m a hard working guy. I I just that side of me,

Nice guy. I think there was a little intrigue probably from my past that I I was an exciting guy. I did a lot of things and and even though once we met, I was really trying to taper down and really trying to get a hold of myself and which I did and and w we did really, really well together for quite a few years and and then I think I wore

wore her down with that dual personality. Not think. I know I did. She finally it was too much for her and and and things kinda went south for us. We I I I can’t imagine even though I watched what I put her through, I don’t know how she lasted. she left for a lot of years after my stroke.

We split up for a lot of years and and I I’ve made some changes.

Bill Gasiamis (36:30)

So have you been able to reconcile?

Ben Sautter (36:33)

Yes, yes

Bill Gasiamis (36:34)

Okay.

Ben Sautter (36:35)

we have.

Bill Gasiamis (36:36)

Do you think anything that you and I have just discussed, anything of that would have been possible if you didn’t have this stroke?

Ben Sautter (36:47)

Well, I would say no. No. Not unless I’d a wrote the book and it happened like it did. But before the stroke, no, I d I I couldn’t get there. I wanted to, I tried. We we had a lot of conversations, but I just it was like a wall. I I just couldn’t see through it. I couldn’t get through it. I just couldn’t get there. So no, we would not be having this conversation if I hadn’t had a stroke.

Bill Gasiamis (37:16)

That’s fascinating to

me. That’s just fascinating to me that you’ve had this turnaround. And not not to say that turnarounds are complete as soon as the stroke happens or that things are easier or different or better or whatever. But like there seems to be a genuine willingness to discover what this newer version of yourself could be like and could emerge into an author, somebody who wrote book.

somebody who’s reconciled with your wife, somebody who’s admitted all these things that you’ve admitted and kind of made a concerted effort to not fall into those traps. Again, you’ve associated with things. And it’s all because of a stroke, because of a carotid artery blockage, or was it a dissection? What was it?

Ben Sautter (38:10)

It’s just a a blockage above the Y in a little piece of it. I got so lucky. It was a huge blockage and a little tiny piece flaked off, hit me

Bill Gasiamis (38:23)

Uh-huh.

Ben Sautter (38:23)

right up in this side, and that’s why they had to go in and remove that chunk of plaque. And

Bill Gasiamis (38:30)

Yeah.

Ben Sautter (38:31)

yeah.

Bill Gasiamis (38:33)

And it’s kind of it seems like it’s for you at least this experience has been really positive, other than the of course risk to your physical well being and your life, right? Seems a lot of positive has come out of it.

Ben Sautter (38:51)

I would have to agree with that. And and I know Helen would too. I’m I’m much different. I’m a much better person than I was. I so yes, the the stroke you know, I don’t think there’s many people can say that the stroke has done me more good than bad bad. The physical part of it has been a challenge, but I I push that every day and and I’m I’m working hard with that still.

But the cognitive part of it, yeah, I I’m a better I’m a better man now.

Bill Gasiamis (39:29)

Hmm. you’ve got a copy of the book in front of you, I believe.

Ben Sautter (39:33)

Yes.

Bill Gasiamis (39:34)

Show us the the book. Tell me a little bit about how you came to write it. Like what’s the what what why did you feel the need to write the book?

Writing the Memoir That Helped Him Understand Himself

Ben Sautter (39:50)

So I actually started the book in twenty sixteen before I had the stroke. And I it my intention was to write a bunch of stories about all the crazy things I did, crazy things that happened to me. Just a book of stories is what I was gonna write. And once I got serious about it last September, I sat down, got out what I had, and

And once I started I couldn’t stop writing. I wrote this book in ten weeks and it just poured out of me and it’s nothing like I ever would have thought I could write. it has good value. It has value for anyone that reads it.

Bill Gasiamis (40:40)

So it’s a 10 year project that took ten days to ten weeks or ten days to complete. Ten weeks to

Ben Sautter (40:46)

Ten weeks. Ten weeks.

Bill Gasiamis (40:48)

complete. So that’s really cool in that like the idea was already there, germinating. It it took a while. you had to overcome certain things. You had to probably move beyond, you know, certain parts of your your your transformation to get to the stage where the book was possible.

it sounds like you put in work with your family, with yourself. How long have you been seeing a counselor?

Ben Sautter (41:18)

Right after the stroke I started seeing my psychologist and and it’s interesting to me really early on she had me doing

work that was for PTSD. And she would give me lessons to bring home. And they were for the for the veterans that suffered from PTSD, which I never knew anything about it. It was kind of a phantom thing for me, because I didn’t know anything. And and I’ll be honest with you here, one night on 60 Minutes I was watching a veteran with his

wife and daughter being interviewed on sixty minutes and he had the PTSD and that family was talking about him doing the it saying, doing, thinking, the exact things I was doing with my family. And that really just hit me hard. No wonder I’m doing PTSD work because the stroke is the same thing i i in a sense.

And that’s where I learned so much watching that segment that night. I learned about myself, my family. And that’s when I realized that’s when I realized my family suffered the stroke as much as I did. That came to me.

Bill Gasiamis (42:51)

What’s interesting is I asked you about things that might have happened in your past that may have been foundational kind of things that were responsible for these two personalities of you. You mentioned your dad, your upbringing, some of the stuff that he would get up to and how you were kind of influenced by him. But y I just heard now that you’re a veteran. So did you actually attend did you serve as a veteran?

Ben Sautter (43:19)

I did. I did a couple of years in the Navy in right when the Vietnam War was getting was ending. In fact I was in in April of seventy-five is when it ended. And I never went overseas. I was shore duty in California. I was at NAS Alameda and and that’s a pretty big piece in my book of of my time in the Navy, which is quite a story.

but I I didn’t suffer any any I didn’t go to I didn’t go to war. I did not go to war. I I

Bill Gasiamis (43:55)

Or no battle no battles or

anything like that. And and do you think the PTSD was from something else, perhaps?

Ben Sautter (44:04)

I think it w just from the stroke. Just from the stroke and I didn’t know it. that’s

what I got from that sixty minutes segment is is the cognitive things that I was saying that and didn’t understand what the stroke did to me. I thought I was fine. I went to work back to work a couple months after I had the stroke. I worked for a couple months and I realized

I I wasn’t cutting it.

Bill Gasiamis (44:36)

Whose idea was it to go to counselling after the stroke?

Ben Sautter (44:46)

I don’t know that I don’t remember, but I would say they probably just assigned me to a psychologist to to to see where I’m at, help me through it. VA Ford Harrison is phenomenal, those people. great staff there. So they just were taking care of me, I think. I don’t remember it.

Bill Gasiamis (45:06)

Yeah, might have just been

standard part of the approach to helping somebody who’s a VA.

Ben Sautter (45:14)

That would be my my my guess that it was just part of their program.

Bill Gasiamis (45:20)

And it sounds like you were pretty willing or or were you resistant at the beginning. Do you recall how you felt about being in counseling?

Ben Sautter (45:29)

Yeah, I I was fine to go there and really really like this psychologist I see and and the other ones. I’ve seen numerous psychologists there and yeah, they I always feel better coming out of there than I do when I walk in. So no doubt.

Bill Gasiamis (45:51)

Have you expanded on your happy, sad, angry emotions?

Ben Sautter (45:55)

I’m I’m pretty even now. I don’t get too wild. When I first had the stroke I was very emotional. I was tears in my eyes over almost nothing. it was quite a struggle for

Bill Gasiamis (46:13)

That’s common.

Ben Sautter (46:14)

s some years. And and now I I I’ve I’m very well in control of my emotions and to the point that I’m

I might be a fairly boring guy. I like to have fun. I laugh a lot. I’m not the wild guy that I was, but so so I I don’t have much anger. I don’t have much sadness. My anger y my sadness used to turn to anger. So I really had happy and angry is really what I had. I I don’t go there anymore. Life is too good for me now. I don’t

I don’t have sadness or anger.

Bill Gasiamis (46:55)

every so often you say a couple of things and it triggers me to ask you the next question again. And it’s kind of my job to probe. And this is not a counseling session, but it’s very fascinating. Was there perhaps some kind of a personality disorder there, like a like a bipolar or something like that? Because you’re describing like happy, angry, or do you know there’s no in between and it’s very bipolar ish. Whereas I know it’s not bipolar.

Because in Bipala they’re described as being happy and really, really kind of deep, sad extremes. But you seem to occupy a similar kind of space does that ring a bell? Did anyone ever bring that up, perhaps?

Ben Sautter (47:38)

No, I’m I’m I’m d just too happy all the time, always not in the good mood that I always used to be, but I lived pretty happy life. I I just didn’t let the rest get me. But when I went off in the weeds, I my anger was would get away from me.

Bill Gasiamis (48:01)

That’s a great way to describe it because that’s tend tends to be how anger is. Like it just kind of builds up and builds up and then it gets away. And if you do that often enough, it becomes really easy to get to anger. And what people don’t realise is that anger is also and complaining and all those types of things also releases dopamine in the brain. There is a reward that people get for misbehaving

Ben Sautter (48:26)

Mm.

Bill Gasiamis (48:26)

and expressing anger. Otherwise you wouldn’t do it.

There is the there is also the I I’m trying to achieve something or get something done or I’m trying to intimidate some someone or I’m trying to you know get a child to take action somewhere where they frustrated me or whatever. So there there is a a a th this underlying purpose for anger, but also it’s a rewarding to the brain when you act out in an angry way.

Ben Sautter (48:58)

I think that’s a really good point. When I was younger, I would break I would look to break something. I would get so mad I just I would break something and then I felt good about it. Okay, I got that broke. Now I’m now I can be happy again. So just exactly what you just said. Interesting. Hmm.

Bill Gasiamis (49:19)

Yeah. That is interesting. It’s interesting and fascinating.

Stroke as a Catalyst for Change

This has been one of the most interesting conversations I’ve had because we’ve barely spoken about the stroke and how you experienced it and what it did to you. But it seems like we’ve spoken about it enough in that it was a catalyst to something new, something different. And often my attempt has always been in these interviews is to tell people about the fact

You know, we share a story of what life was like before stroke for people. And then we sure share the story of like what happened during the stroke time and then what happened after. And if you’re currently in the stroke moment, it’s really, really hard. You you don’t know where things are headed. There’s a lot of uncertainty, a lot of change, a lot of experiences that you never saw coming, you know, things that are happening. You might be experiencing your body differently, your cognition differently.

your hearing, your speech, it all might be different and it’s extremely full on in that moment. And the idea is, well, let’s continue with the conversation and try and move and and paint a picture of what life might be like for somebody, even though they’re going through a really hard time five, six, seven, ten years down the track, you know? And you’re in the 10 year mark and it’s taken you 10 years to get here, write a book, reflect on your past the way that you’ve been reflecting.

mend your relationships, become more aware of your behavior, the one that served you, the one that didn’t. And it’s not really a story about stroke, but it’s stroke seems to have been the catalyst for an opportunity for you to look at things a different way and for it to break certain patterns that were embedded that

now have been able to be in kind of like fizzled. You know, the edges of them were fizzled away so that something could enter and you know, like throw a spanner in the works and change the way the cogs moved. and it’s just fascinating that stroke can do that.

if we didn’t talk about that part of stroke, that good part of stroke, people might only see stroke as only ever being a terrible thing that happened to them, which I also understand if somebody feels that way, because there’s a big spectrum of how people are impacted by stroke. So I don’t wanna take that away from people who are suffering.

but you you know, like the shift and the change that you’ve had

through a stroke is just night and day, it’s phenomenal.

Ben Sautter (52:07)

One of the bigger things I think I’ve learned that goes with that is

It’s been a few years ago I learned that that guy that I was, that guy’s gone. And I am not gonna be that guy ever again. So I I’m looking at at the guy that I am, who I believe is a better guy than I was anyway. So that’s been a good thing. And I think that comes from my wife and from my psychologist at the VA that it it’s

There’s no more who I was, it’s who I am. And and that’s come a long ways because of that, I

Bill Gasiamis (52:51)

Yeah.

Ben Sautter (52:51)

believe.

Bill Gasiamis (52:52)

And who you’re becoming by the sound of things.

Ben Sautter (52:55)

That too. Yes. Yeah, because I I do that’s a really good point. I do know I will get better. I will be better as time goes on. But you gotta keep you gotta keep working at it.

Bill Gasiamis (53:10)

Yeah. Being better and getting better, does that mean that the f the the way the leg feels is different or can the the the way the leg feels not necessarily go back to normal and you still are getting better, you still are improving, even though your leg perhaps stays

Ben Sautter (53:29)

Lake skiing. my pain is way, way, way down to where I don’t my pain is nil. I can go well, I I do a lot of needles, I do a lot of injections, I do a lot for it, but those are getting less. so th I’m hurting less, I’m hiking better, I ride my bike a lot, all those things.

are I’m gaining the numbness, the tingle’s gone. That electricity thing like your fingers in a socket, that’s all gone. The s hard stiffness is down in my lower leg and my foot, so my leg’s better. yeah physically I’m getting better, better better.

Bill Gasiamis (54:22)

Yeah. Where can people go and find the book?

Ben Sautter (54:27)

Amazon. Amazon. Mr. Hyde and Me. The name of the book. Yeah, I’m

Bill Gasiamis (54:32)

Yeah. The links will Yeah.

Ben Sautter (54:35)

this is me. This picture is me on

Bill Gasiamis (54:38)

Yeah.

Ben Sautter (54:39)

the corner, on the corner of Wilson and Main Street in downtown Bozeman. Bozeman, Montana. So took a took a lot of thought to get to make that picture and to get that shadow just right.

So my shadow guy facing into him head on. And been a lot of been a lot of reward doing this. This I called this therapy on steroids. writing this book was incredibly therapeutic.

Bill Gasiamis (55:14)

Yeah. I can imagine. Ben, thank you so much for reaching out. Really appreciate your conversation and your honesty and I really wish you well with your recovery ongoing.

Ben Sautter (55:26)

And thank you. This is one of the better conversations I’ve had about my my situation ever. So Bill, I can’t thank you enough. I appreciate it and I’ll look forward to this all turns out.

Bill Gasiamis (55:40)

Well, that’s it for another episode of the Recovery After Stroke podcast. If there’s one thing to take from this episode, it’s Ben’s line. That guy that I was, that guy’s gone. I’m not going to be that guy ever again. A stroke took something from Ben, but it also gave him a level of self-awareness and emotional range he says he never had access to before. And it helped him rebuild a marriage he thought he’d lost for good. If you want the full story, Ben’s memoir.

Mr. Hyde and me is available on Amazon. You’ll find links in the bio. And if this episode resonated with you, share it with someone who might need to hear it. And if you’re looking for more tools for your own recovery, check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s available at recoveryafterstroke.com/book.

If this show has helped you or someone you love get through their journey with stroke, you can support the show to help keep it going on patreon.com/recoveryafterstroke. And if you want to work with me directly, my coaching program Momentum offers one-on-one support and accountability for stroke survivors who feel stuck. More at recoveryafterstroke.com/momentum. Thanks for listening and I’ll see you in the next episode.

The post Jekyll, Hyde, and the Stroke That Changed Everything: Ben Sautter’s Story appeared first on Recovery After Stroke.

Next of Kin After Stroke: When Your 19-Year-Old Has to Decide For You

Kylie Ralston was 56, living alone in Sofia, Bulgaria, and getting back into shape after a divorce. Three mornings a week she ran. On the morning everything changed, she was doing a local park run with her friend Rebecca when she slowed to a walk, then tried to run again and couldn’t. “It was like the message wasn’t getting through from my brain to my legs,” she says. No headache. No fatigue. Nothing that felt like an emergency. She finished the run, registered her time, and went home. It wasn’t until she collapsed getting out of the car that anyone understood what was happening.

By the time Kylie reached hospital, she had suffered a left frontoparietal haemorrhagic stroke, a spontaneous brain bleed roughly 7.5cm across, with none of the usual risk factors. No high blood pressure. No cholesterol history. No aneurysm, no AVM. She was placed in an induced coma for four days. When she woke, she couldn’t move her right side, and she couldn’t speak.

What “Next of Kin” Really Means When a Stroke Hits Abroad

Kylie was a permanent resident of Bulgaria, not a citizen, divorced from her daughter’s father, and living on her own. When the hospital needed someone to authorise emergency surgery, there was exactly one person available to make that call: her daughter, then 19 years old, splitting her time between her separated parents’ homes.

It’s a detail easy to skim past, but it sits at the centre of this episode: next of kin isn’t a role most of us think about until a hospital needs an answer immediately. Kylie hadn’t nominated her daughter out of any formal planning process; it simply fell to her, because she was the only adult relative in the country who met the age threshold.

A 19-Year-Old Signing Consent-to-Operate Forms

Kylie’s friends contacted her daughter directly. She rushed to the hospital, and unconscious, unable to advocate for herself, her mother’s care now depended on decisions made by a teenager under enormous duress. Kylie’s first memory afterward is her daughter arriving in the ICU in a hairnet and scrubs, holding her hand, telling her she loved her.

It’s the kind of moment that rarely makes it into conversations about stroke recovery, because the focus so often lands on rehabilitation milestones: walking, speaking, returning to work. But before any of that, someone has to be legally empowered to say yes to surgery, and for Kylie, that someone hadn’t expected the responsibility for another few decades.

The Gap Between Acute Surgery and Real Rehabilitation

Bulgaria’s acute care, Kylie and her friend Nicole Nott both stress, was world-class surgery within roughly two hours of the stroke, the kind of outcome her friends still describe as a miracle given the size of the bleed. What came next was a different story. In the public hospital, physiotherapy visits totalled two sessions. There was no speech therapy. After 14 days, still unable to move her right side or speak, Kylie was expected to go home. Her partner, Guido, refused to accept it, and the couple began privately funding rehabilitation themselves.

This is a distinction worth sitting with if you or someone you love is navigating stroke recovery in a country or even a region with limited public rehab funding: acute survival and functional recovery are not the same fight, and they are not always resourced the same way.

When a Friend Becomes the Rehab Team

Nicole Nott, an occupational therapist and Kylie’s friend since they were 16, found out about the stroke through a message she initially suspected was a scam. Within days she’d cleared her schedule and flown from Australia to Bulgaria. What she found in the private rehab hospital was a caring but under-trained care team, kind staff with, as Nicole puts it, “no rehab expertise.”

Nicole spent close to two weeks restructuring Kylie’s room and routine around basic stroke rehabilitation principles: approaching from Kylie’s affected right side to address her spatial inattention, built-up cutlery to force use of her weaker hand, a balloon tapped back and forth for shoulder strength, word games layered on top for speech practice, pegs and curtains repurposed into arm exercises. She also pushed back hard against hospital staff who tried to stop her from helping Kylie transfer to a shower chair or toilet, at one point being told outright she wasn’t permitted because she was a woman. Her single goal before flying home: get Kylie toileting independently again, for dignity as much as mobility. Kylie called her from Dubai airport, mid-transit, to tell her it had happened.

Living With Aphasia

Fourteen months on, Kylie’s right-side weakness has largely resolved. What remains, she says, is the hardest part: expressive aphasia. “I can’t express myself like I used to.” It’s a small, telling detail of the condition that even the phrase “I can’t” is itself shaped by the aphasia; the words available to describe the loss are affected by the loss.

The Unexpected Gains

Both women point to what came out of the crisis alongside the hardship: Kylie’s relationship with her daughter deepened. Her circle of friends in Bulgaria proved itself in ways she hadn’t anticipated. And in the rehab hospital, her partner Guido proposed something; he told her he’d already decided before the stroke but simply hadn’t gotten around to asking.

If this episode raises questions about who is legally positioned to make decisions for you and whether that person actually knows it, it may be worth a conversation with your own family before a crisis forces the issue.

For a deeper account of navigating identity, recovery, and unexpected transformation after stroke, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened is available at recoveryafterstroke.com/book.

If this show has helped you, you can support it at 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.

Kylie Ralston: Stroke, Bulgaria, and the Friend Who Flew Across the World

When Kylie had a stroke abroad, her 19-year-old daughter became her next of kin, and a friend flew in to help her recover.

Bill’s Book: The Unexpected Way That A Stroke Became The Best Thing That Happened 
Support the Recovery After Stroke On Patreon

Highlights:

00:00 Introduction – Next of Kin After Stroke
03:47 The Day of the Stroke
08:55 Rehabilitation Challenges in Bulgaria
16:32 Coping with Language Barriers
22:08 Reflections on Healthcare Systems
32:50 Setting Goals and Achievements
38:29 Family Dynamics and Support Systems
45:36 Finding Meaning in Recovery
54:44 The Impact of Caregiving
58:22 Reflections on Recovery and Gratitude

Transcript:

Introduction – Next of Kin After Stroke

Bill Gasiamis (00:00)
And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it made me feel quite sick actually And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke.

Bill Gasiamis (00:16)
Welcome back to Recovery After Stroke. I’m Bill Gasiamis, and today I’m joined by two guests, Kylie Ralston and her friend Nicole Nott. Kylie was 56 living in Bulgaria when she suffered a left frontoparietal hemorrhagic stroke, a spontaneous brain bleed with none of the usual risk factors.

Nicole is an occupational therapist and one of Kylie’s closest friends since they were teenagers. And when she found out what happened, she got on a plane to Bulgaria to help. In this episode, we get into what it means to have a stroke far from home in a country where you don’t speak the language, and public rehabilitation funding barely exists. We talk about who becomes your next of kin when you least expect it, what it’s like to advocate for a friend inside a hospital system that won’t always listen.

And what recovery actually looks like 14 months on, before we get into it, if you want a deeper look at identity, recovery, and unexpected transformation after stroke, my book, The Unexpected Way That Stroke Became, the best thing that happened, is available at recoveryafterstroke.com/book. And if this show has helped you

And you can support it to keep me on the path of getting to a thousand episodes, you can do so At patreon.com/recoveryafterstroke

Bill Gasiamis (01:37)
Kylie Ralston and Nicole Nott, welcome to the podcast.

lovely to be here, Bill. Thanks for having us, Bill. Kylie, tell me a little bit about what life was like before the stroke. I was very active and I had a full life and I was working full time. and I was living in Sofia in Bulgaria, in my on my own, in my own apartment. I was renting, actually.

and I was getting back to fitness. So I was g getting I was running regularly. So two two or three times a week I was hitting the gym and hitting the tr the treadmill. And that had been happening for like a few month like six months or something like that. but before that I was very fit and active. What kind of work were you involved in?

I was a HR work. I was a ha HR leader and so I had my own consultancy I had a team of people that I’ve managed.

I had thirty five people, so and that they were people in Germany, Poland, Czechia, Portugal, France, so everywhere in in Europe, basically. Yeah. Wow, how how does an Aussie end up in Bulgaria with staff or clients in that many

countries? short answer is I came here with my family, so with my ex husband. and shortly after I arrived we separated and and ultimately got divorced. and I stayed on because my daughter is here. So she was only eleven at the time and I could just couldn’t leave her.

The Day of the Stroke

So you were living at home with your daughter? she was sharing her time between between us both. Yeah. got it. Okay. So both parents are there. So your daughter was going backwards and forwards. On the night of the stroke or on the day of the stroke, can you take us through that? What were you experiencing? Was there anything unusual that happened that made you think something was wrong? How did it go down? I was with my friend Rebecca.

And she was running ahead of me as she she was faster than me, so sh and she often often ran ahead of me. and I’d slowed down to a walk and when I started to run again or try to run again, it it was like the message wasn’t getting through from my brain to my legs. And I thought, that’s strange, that’s that’s really odd. ‘Cause I didn’t feel like tired or

anything and I didn’t have a headache and well stuff like that. and I just walked through the rest of the park run. And then when Rebecca saw me coming to the finish line, she waved me over and she said, come on, let’s go register your chip. and so I did that. and she said afterwards that

there was a little bit of fumbling with with my phone and there’s a there was a little bit of fumbling when I put my jacket on, but other than that, I just seemed exhausted from a run. do you recall after the experience of feeling exhausted from the run where you ended up? Did you need help?

Yeah, I do. So so she didn’t notice that I wasn’t talking because I n I’m normally an endless talker, so I she didn’t notice that I wasn’t talking. And she said that that that is one thing that should have alerted her to what was happening. but it it didn’t. And so I’d caught the bus to the park run and her husband was there and so he drove me home.

And I j I remember the journey home and when when we when I went to get out, I just couldn’t. And so and Mark came around to my side of the car and help tried to help me out and I just collapsed against him. And so then that so then they said, quick, something’s wrong something’s I don’t remember what they 

They they said, you know, they basically took me straight to the hospital. Yeah. And also rang Guido, my now fiance, but my partner at the time. Uh-huh. So you you went from the run, attempted to go home, and then from that attempt to get you out of the car, actually into your home, it was pretty clear that that wasn’t gonna happen and you ended up in hospital. so

Did you guys drive to hospital? Do you recall that? Yes. Yes. We do how far is it from your home? it’s pretty close. I don’t know about kilometres or time, but it’s but it’s like ten or fifteen minutes. Yeah, so it’s not too far. But they didn’t know what was going on, of course. They just knew something wasn’t right and then they figured one of the best things to do is just get it to a hospital. You get to the hospital

Do you know what happens after that? Do you get admitted? do you get tested for anything? I suppose what I’m asking is when is the first time you realise that that you’ve had a stroke? When do they report that back? When I came out of the coma. So I was put I was put into an an induced coma straight away. so I I obviously don’t remember anything of of that. and but Rebecca’s told me afterwards.

so she’s filled in the f filled in the filled in the blanks for me. and by that stage her husband thought it was a stroke. So she’s he said he said to the staff at the hospital, we think she’s having a stroke. And so yeah. So how long were you in the coma, do you know? Has somebody told you how long it was? Yeah, four four days.

Four days, okay. And do you know what kind of stroke you had? Yep. I had a left

Frontoparietal hemorrhagic stroke. Wow, that’s a good effort. So you had a brain bleed. Yep. Do they know what caused it? No. It was spontaneous and I didn’t have any of the risk factors. So I didn’t have high blood pressure, a history of high blood pressure, but admittedly I’d hadn’t tested my blood pressure immediately before the stroke. but you know

That’s un that’s unlikely to be the cause. And I didn’t have a hi a history of high cholesterol. and so they just and I didn’t have an aneurysm and I didn’t have like what’s the other thing? The An AV AVM. AVM, yeah, I didn’t have any of that. And how old were you? Fifty six. Okay. So you had a spontaneous

Bleed in the brain. That happens. People do have that happen from time to time. And sometimes they don’t have any symptoms leading up to it or anything like that. and this is the bizarre nature of like there’s an unlimited number of ways, unfortunately, for people to have a stroke. Now, you woke up in hospital four days later. What kind of deficits did you have? I couldn’t move my right side and I couldn’t speak. Okay.

Now I’ve got an idea of well, I haven’t got an idea, but my mind immediately kind of says like if you’re in hospital in Bulgaria, that’s not a hospital in Melbourne. That’s not the Royal Melbourne hospital where no shit is unreal, like it’s perfect and it’s got the highest technology and it doesn’t matter how many things we can bitch and moan about the system being here like compared to Bulgaria, my expectation is that we’re world class.

Perhaps that’s not the case in Bulgaria. Would you agree with that statement? I would have agreed before and my my my expat friends here would have agreed before, but now we’re all saying maybe Bulgaria is better than we thought. That’s brilliant. Awesome. Okay, so

Rehabilitation Challenges in Bulgaria

As far as like medical interventions and all that type of stuff, you felt like that was handled like any other world class hospital would have handled it. Yeah. In that in that s it in that stage it was. but there’s no like that was a public hospital and there’s no there’s no public funded rehab after.

or or very li very little. So so that’s where that’s where Australia is ahead. So when you knew you had deficits, was there any rehabilitation whatsoever? Did you get any of that while you were still in hospital? Minimal. So the the physio came to see me twice. and so that’s so that’s all and I got no speech therapy and stuff like that.

and but when I was discharged from the public hospital here and went and so they they expected me to go home from the public hospital. And so Guido said she just can’t like like what what the fuck? After how many days? After how many days, how long? Fourteen.

Wow, your right side was still offline and you still had problem. Yeah. Okay. So we we just paid for paid for private rehab. got it, right. Yeah. And how long were you in private rehab for? another like two months or something like that. Right. Okay, that’s pretty cool. So i even though you couldn’t access it publicly, you were still able to

Access a private now. Are you a citizen in Bulgaria? Not a citizen, a permanent resident. Okay. So do you have are you as a result of the fact that you’re a permanent resident and not a citizen, do you have different things that you are able to access because of your status? No. no. I’m it’s I have the same rights as a citizen. The only one the only right I don’t have is

I’m I’m not able to vote here and I’m not I’m not able to work in other EU countries. Got it. Okay. So that’s pretty traumatizing, the whole experience, and then to have to deal with overcoming your left side and your speech deficits after the two month mark, roughly where were you at where you where you are now? Because you kinda sound pretty good. Okay.

No, yeah. no and and the other thing the other thing that I must say about Bulgaria is I don’t speak Bulgarian. very very little. So that was a problem. Yeah. I can imagine, yeah. so maybe you can come in here, Nicole, and and talk about where I was at when you came to see me, because that was very very very early on in my

in in the private rehab hospital. Yeah, Nicole, tell me a little bit about what it’s like to receive a phone call to find out that your friend has had a stroke. I was absolutely hellish. the way I found out is I got a message through social media from someone saying, Hey, I’m a friend of Kylie’s and she’s in hospital in Bulgaria.

And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it really, you know, it made me feel quite sick actually thinking this is that’s not someone I know. It does look like a name I’ve seen in Kylie’s kind of social media world. And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke. and I was kind of

beside myself because by training I’m an occupational therapist, but Kylie and I have known each other each other since we were about 16. and it was really hard to get the information that I wanted as a friend, but also as a health professional. I was wanting to understand what kind of stroke is it? Where is it? What’s the rehab? What can we do? How’s it going? And at that stage the information that I had was that

you know, it was really seriously affected the speech part of the brain and obviously the hemiplegia, the weakness down the right side and knowing that Kylie was right handed. so, you know, it’s the friendship part that your heart’s breaking and it’s also the therapist part that’s wanting the information to be able to, you know, reconcile it for myself, professionally what that was going to look like as a consequence for Kylie. Yeah, and you’re so far away, so you really can’t

do anything and kind of have to like take information second hand, third hand, and be kind of in a position which is really uncomfortable for, I imagine, a friend, but also a therapist, right? So as an occupational therapist, that’s not the information you work on. You work on actual facts, scans, reports, like a whole bunch of things. So are you also playing it out in your mind? Are you kind of

Doom thinking it, like are you how does it affect you personally? I think for me I was all I was really very conscious of not stressing other people. So like friends, family, because sometimes when you are a health professional, you know, you have knowledge and information and you know, you sometimes you you’re keeping that to yourself to some extent because you do know what can happen to people and you do know what consequences can be. So I was really trying not to ask too many questions of people as well.

but I was seriously desperate for information. And so I remember I’d gone to a party and I didn’t really want to go because I was actually, you know, upset and stressed for Kylie. And I did end up going to a party and during the party I was really kind of outside having a bit of a downer really by a campfire. but I got a phone call or a message to say that I think you’d

said some words, Kylie, and were kind of waking up. so you’re still in the acute hospital then and that you’d been able to move your leg a little bit, I think. Yeah. And you know, joy in that moment. And yeah, I felt very, very far away. And then

What happens over the next few days? Like do you guys continue to communicate somehow? Do you keep getting information? Are you being updated? Yeah. Yeah. I wasn’t able to get my into my phone or my any of my devices. So I wasn’t able to able to because I couldn’t remember my password, right? And so and and I tried like d

different ones and I you know I just got locked out. So and when I was able to get in then that made it it made it easier t because I was able just text short messages. So so Nicole and I kept in touch that way. and before

English-speaking

Before you came, Nicole, I think I was talking, but not not not as well as I am now. Yeah. So was it, Nicole, in your mind, you were always going to fly over to Bulgaria and beath your friend? Or did you guys have to work that out? Like what happened now? It’s so cool that you get to have a somebody in your corner that is also a

Fred, but also a medical professional in the exact field that you’re struggling with now. Right. Like how do you just drop everything and go overseas and be with your friend? Yeah, well, very grateful that I had an up to date passport. So that was that was a good thing. Kylie, it was interesting because the texting, like if I go back and look at that history, it’s like you can see the progress in the texts. So you can see that Kylie

was using kind of more single words and having struggles with spelling and putting sentences together. And then over time, you know, they became more fluent. but the thing that happened was that Kylie and I were talking and she was able to you know, she got some speech back and we were talking. And she was just saying about the rehab care that the the the kind of caring staff

just seemed to have no rehab expertise. So the physios were amazing. I think they were great. There was no active speech therapy for Kylie. I think we ultimately found an English speaking speech therapist but who still had Bulgarian as a first language. And there’s very few occupational therapists in Bulgaria, seems to be some expats. And Kylie was talking to me a jab about just

you know, really basic things like not being taken to the toilet. and that’s probably what broke my heart. It’s like I cannot leave her in bed, not being able to go to the toilet. I just can’t do it. And so I just said to my partner, I think I just need to go to Bulgaria. And luckily I’m self-employed. So I just kind of cleared my schedule, got on a plane and yeah, I was just

I suppose I’m incredibly grateful to have the skill. incredibly grateful to have the financial ability to do it. and yeah, and the skills to do it. And you know, you don’t always get an opportunity in life to do the right thing, or sometimes you don’t make that decision and later you think, Why didn’t I do X, Y, and Z? I try not to live my life like that. I try to actually do those things. So, yeah, I got on a plane and

basically arrived at the airport, got on a train straight out to see Kylie at the Rehope Hospital. You’re a real superhero. I’m very grateful to Nicole. Yeah. I rec you know, my story is kind of well, it has a similar kind of thread to it. I one of my best friends is a radiographer and he was a radiographer at the Royal Melbourne Hospital where

I was a patient for nearly two and a half years because I was in and out with a number of brain hemorrhages. I had three in total in the same spot, but over two and a half years, then I had brain surgery. And I can’t tell you how many scans I had, but being a radiographer, he was the one who was in the room taking the photos through the MRI. Yeah. And then he would come out.

And he would tell us what he saw in the RI, which was against the rules. that’s why I won’t name him. But but that meant that we didn’t have to wait a month to get our results and the the meeting for the results was just more of we’ll go through the process and and have the meeting. Yeah. And and and it was like and I regretted my life

when at school I used to throw his books on the roof of the canteen just to mess with him going to s to class late to get in trouble. and I’ve apologised profusely for that and thanked him every day for the fact that, you know, he was able to lend his well, you know, he was able to be in the room. He was able to have that conversation with us and he was able to ease our minds.

over that two and a half year period and then you won’t believe it. Like his daughter had an AVM at seventeen. And she went through that and and has recovered from that somewhat now in the last few years. and I got to be I mean I hate that I had to be this guy, but I got to be the guy that supported him through that really acute phase and

There is just nothing to describe what it’s like to be able to a repay the favor. and then but B, when I was in that situation to have somebody kind of well, you know, like put their arm around me and really walk me through every stage. Me and my wife and my family walk us through every stage of that part of it, other than intervening as a brain surgeon. But he was the one that put us in char in in touch with my brain surgeon. like

Everything that happened was just the most amazing experience to be able to be guided like that. And I know it’s a privilege and many people don’t get that opportunity. so I see Chris, I haven’t told him this in person. I see him as like a bit of a superhero, but he doesn’t know that. I’ve told him I love him in the way men tell each other that they love each other by s abusing him and swearing at him and telling him that the team that he follows is terrible and all that kind of stuff.

Reflections on Healthcare Systems

so you arrived in Bulgaria. take me from the airport to the hospital. Like what happens? How is that? Actually the flight was really good. Customs was pretty easy. There was some annoying folk in front of me who I wanted to punch in the face and tell them to hurry up, but I was just, you know, needed to to get there. Kylie’s daughter met me at the airport.

And then we got the train together out to the hospital. So, you know, obviously I’m seeing my first sight of Bulgaria. I’d never been there before. so not really taking a tourist route at this point. so went out to see Kylie. And, you know, when you just eyeball someone and I, you know, just thank God I’m here, I’m in front of her. Her she’d had a shaved head. she had some pretty spectacular surgical scars, a couple of very big scabs still on her head.

she looked skinny, she looked pale, she had started doing a little bit of movement and the hospital room was really kind basic and crazy. Her friends had funded a pressure mattress for her that didn’t exist. And some of these things I had been liaising with Kylie’s friends in Bulgaria about what could we do, how you know, what do we want to prevent? So we want to prevent anyone pulling on from.

Her weak shoulders and like don’t let anyone pull her by the arm. this is how I want, you know, to help her with posture in bed or in sitting. and you know, like speaking in single kind of actions at a time and just take your time, say something, wait, wait, wait, wait, wait. Just allow Kylie’s brain to, you know, take that information on board. Don’t speak for her. and when I got there, it was really clear that.

She had an inattention to the right hand side as an effect from the stroke. So then I was a bit of a ball breaker, rearranging the whole room. No, no, no, no, no. Where, you know, everyone come from the right, everyone sit on the right. no cutler, you’re not allowed to have your phone in your left hand, you’re having your phone in your right hand. I’d taken some things with me from Australia to Bulgaria that I thought she might need. like some built-up cutlery, because I wanted her to use her right hand to feed herself. I took a couple of

kind of activities that I thought we could do to look at some retraining for the right arm. what I’ll still bring with me, try to remember now. Benjamin. So yeah, just try kind of going into early stroke rehab principles. Yeah. Did you go there well you went there as a friend. But when you were there, were you able to be a professional and also have a conversation with the local team?

Kylie and I laughing. Do you want to tell that story, Kylie? Which one are you thinking about? Where I got told off. No, I don’t remember that. well, Kylie was in act like, you know, there was still quite a lot of weakness, but she was also so determined for her own rehab. And in the system there their carers really don’t have a rehab focus. They have a

I’ll provide you a meal focus and I’ll occasionally do some cleaning and I’ll occasionally change the bed linen and but really not a rehab focus. So I’ve personally found it quite easy to help Kylie to like stand move. And so the very first weekend I was there, it was a long weekend and what I didn’t realise later was that they were actually quite understaffed.

Which worked in our favour because I was helping Kylie to get onto a shower chair, taking her to have a shower, us taking her to the toilet, because prior to that time they were just, you know, using pads for toileting because Kylie couldn’t stand up or move on her own. And because I’m trained, I found it very easy. She’s a lightweight person and she and I just work together and I could do that. I think it was the Tuesday,

person who I refer to as Nurse Ratchet. remembering now kind of intercepted me bringing Kylie back from the bathroom to her room and just like, nope, nope, nope, nope, nope, nope, nope. What are you doing? Stop that, stop that, stop that. and you know, she and I are having a bit of a a discussion. And basically she’s refused and I’m allowed to move Kylie. So Kylie is sitting out in the corridor. I think I’d luckily kind of covered you up for privacy.

and she’s like, No, you’re not allowed to move her. I’m gonna go and get the physio. I think at least forty minutes went by and then she comes back, well, okay, and I said, Look, I am a trained person, it’s easy, it’s safe. no, I’ll think about it. And then after I think another fifteen minutes she pushed your chair into the bedroom. And then I think it was probably another fifteen minutes where she just decided to move Kylie herself at that point.

even though that was out of policy and the physios had to do it. And then it was all this discussion with me that you can’t do it. And in the end it was you can’t do it because you’re a woman. Not strong enough, you know. so yeah. Then Kylie and I kind of would go on clandestine missions because again, from a rehab point of view, being able to stand transfer, it’s putting all the weight through the leg, it’s giving feedback to the brain. I really wanted to make sure Kylie’s bladder and bowel were gonna work properly.

And you know, sitting in bed and that’s just not ideal. So then Kylie’s like, Nicole, I want to go to the toilet. I was like, I’m banned, I’m banned, Mother Nurse Ratchet, I’m not allowed to take you. And I was like, shit. So I would go on a little mission, go look down the corridor, make sure she was nowhere to be seen. And then I quickly stole the shower chair and then I found a bucket. And so Kylie and I were doing

secret Wii missions in the bedroom. until w on one of our missions I just hadn’t quite got the bucket in the right place. And so then I it was also then later on a cleaning mission. So it was it was a pretty crazy environment. yeah, just for that lack of t whole team approach to rehab. Whereas, you know, in Australia the nurses would all be rehab trained. They would be transferring someone

physios would come in, speech would be coming, OTs would be coming. So I was kind of desperately trying to convince Kylie or to get her rehab to a standard where she’d be able to come back to Australia to get some more rehab. You know what’s good about this conversation other than the hilarious nature of it also is that

I as an as a person who hadn’t had a stroke before my hadn’t known anyone who had a stroke before my experience, if I had come across somebody who had had a stroke, I wouldn’t have known what to look out for and what to say to support them in a situation where perhaps something was being neglected. Because I don’t know what I don’t know. I’m not a professional, right? Just like those nurses and therapists that weren’t specifically trained.

Yeah. In certain things. I mean, you may as well be not only talking a different language, but you may as well be making it up as you go because as far as they know, now this is what we do for stroke patients. This is how we handle that. is it a lack of understanding of what r stroke rehabilitation requires, or is it a lack of resources, or is it a little bit of both? Do you feel in Bulgaria when you were there?

I think I think it’s a lack of of all all of that but it’s the lack of maybe money. So it’s a lack of training. So th there’s there’s not enough there’s not the the nurses or the orderlies or whatever they’re called here, are are aren’t paid very much. So they so

And t just like, even though I was in a private rehab hospital, so you would have expected that more. It’s you would have expected more, but I just think that they just don’t have the money to to train those people. Yeah. it wasn’t really a role, was it, Kylie? Like they really were more like housekeepers in a sense. It was more like cleaning a meals.

I have to say the physios were excellent. and a lot of the physios had good English as well, which was for your rehab was so important. because again a lot of the carers they would come into the room and you know, again, just from a speech therapy point of view, in Australia, say if someone came into the room who was the person who did the menus or filled up the water bottles or the cleaners, Kyler could have spoken to all of those people and had

 

incidental communication the whole day in English. But because of all of those p incidental people coming in didn’t speak English, you know, reasonably in Bulgaria. it just for me, I was worried about the lack of just exposure to English language as well. So not even speech therapy, just incidental language through the day. Which is very helpful and people don’t realise how helpful it is to be able to speak to a nurse about how you’re feeling or what’s happening.

Yeah. And all the usual stuff. And Kylie’s chatty and friendly and she would have just been having conversations galore, but it just it it it couldn’t be. Yeah. Yeah, it’s another another barrier. so you know when you go overseas, it’s your friend and you’re a professional. How do you handle that? Because you know, like are you emotional? Are you trying to put a lid on it? Are you allowing yourself to

Gonna be emotional. How does that work? We had some killer laughs, didn’t we? I mean, I’m a joker anyway. And so, like the first time Kylie got to do a poo on the toilet, I just did a poo dance for her. So I I felt half my job was you know, cheering her up and keeping it light and having fun and chatting about stuff we would just always chat about.

as well as doing as much rehab because it was very exhausting because, you know, p after a stroke, it’s very fatiguing. you know, so to Kylie was really tired and needed lots of rest. So and because I had just you know, obviously dropped tools to go over quickly, I was just working sometimes. So I just have my computer and if Kylie was asleep I’d just stay with her and and her partner Guido as well, who was there with her as well. So just, you know, emotional support wise. But

Yeah, I do some work. And I stayed in Kylie’s apartment. So I w was I just stayed at her place and I I train out to see her each day at the hospital. W how many hours would you spend in hospital with her? What do you think, Kylie? you would often arrive at like ten in the morning and you wouldn’t go till like five in the evening or six in the evening. Yeah. So technically visiting hours kind of finished at six.

So I just try and stay most of the day. A full shift. Yeah. Yeah. Unpaid. Unpaid labour. Slave driver. Yeah. yeah. But nah. That’s what friends are for. I very what I very much wanted to stay the whole day because I did really, really wanna like especially the toileting thing. I just really wanted that.

Setting Goals and Achievements

I had this bit of a goal for myself for Kylie that she would be able to take herself to the toilet before I left the country. So just from a dignity point of view, from a mobility point of view, transfers, you know, bladder control. So yeah, that was one of my big goals. And she rang me when I was in transit at Dubai Airport on my way back to Australia and said, Nicole, I just took myself to the toilet. Wow, that’s cool. Yeah. Yeah. And and I was having

physio two physio sessions a d a wi a day. So I was having other than Nicole. So I was having like about one session about of about an hour in the morning and one session of about an hour in the in the afternoon. Got it. You Kylie seem like pretty mm chill, pretty calm. how are you handling it though, emotionally? How’s the aftermath

Treating you because there’s a little bit of you know, there’s all that acute stuff. It’s awesome when your friend is there, but then your friend goes home, right? So how how does that transition kind of happen? Yeah, I might start crying. because I’ve just recently spent seven months in Australia. So I I went to Australia in October last year and I came back in just in May.

and I had more rehab there. So I had I had student led rehab at at first and then I got in got accepted into Birch, which is the brain injury rehab community and home in Ad in Adelaide. so that’s that is is a whole team of people. So I had I had physio and I and a occupational therapist and a

a e exercise physiologist and a speech therapist and stuff like that so I th that’s really good. now the most frustrating part for me is the aphasia so I I can’t I can’t express myself like I used to. Yeah. You know what I love about

interviewing people who have aphasia is when they say I can’t in a sentence to describe something to me it triggers the part of the condition which doesn’t allow the words to come out. It’s so interesting. That happens so so often. And it’s just a for me, I noticed this I’m saying it just from a perspective is maybe I can’t is not the right word. I don’t know. You might remember this, you might not, but maybe I can’t is not the right word. Maybe the right word is

Something that helps you get to the word that you need to get to. And okay, now that’s just me, the uneducated stroke survivor on a phasia guy. Like I don’t know about that. But it’s so interesting, it happens every time. but then Nicole goes home, you go home, your partner is kind of now taking over the caregiving role, and you still have some deficits. phage is one of them.

what about your right side? How offline was it? I I also moved in with Guido after the after the stroke. So so that was that was a has was ha was and has continues to be a challenge because we’re still getting used to living together because we weren’t living together before. and I was very in very independent before.

And I was living in Sofia and he and he and I now live in a in a village. So I live in in a village just outside of Sofia. And I’m not driving yet. but I was medically cleared to drive in Australia before I left. So I’m going through the process here. so anyway, all of all of those things together make it very challenging.

don’t get me wrong, I I l I love him, but but you know, and and I d and and I made that decision because my apartment is was was on the fourth floor and th there was no lift. Wow. Yeah. So back to your question. When I was when I was when I came here,

when I was discharged, I continued with as an outpatient and and the physio continued to come at home twice a week. So I was having more physio maybe like five times a week. and like it were ha had started to come my right side had was all already

back online, but I would I was just working on building strength and

and I would get still very tired. Yeah. And did your daughter end up coming to live with you as well? No. but she she at the beginning she she was my next of kin. So at the ripe old age of nineteen, she signed the consent to operate forms. yeah, so that was that was very difficult for her.

I didn’t know that at the time, obviously. but yeah. And did that happen, did she become your next of kin because your former partner, her dad, and you had separated and then his that role wasn’t gonna be his anymore. It’s just passed down to the person who was the closest to you. Like how did that happen?

Family Dynamics and Support Systems

We’re divorced. I I’m divorced from her dad. Yeah. So he’s definitely not my next kin. Right. So that ha changed after the divorce and she was the only person you could nominate because she was over is there an age limit to the next of kin? Eighteen. Yeah. Okay. So she had hit that criteria, you nominated her and then at nineteen she got to make a decision.

Which she never and you never would have expected ever for that to be a thing. I didn’t nominate her, it would just happen. So I was I I was unconscious at the time that she signed those forms. So yeah. So my friends actually contacted her. and she she rushed to the hospital. so it was all under duress. It was like this is what happened to your mum, you’re her

Next of kin, whether you like it or not, you have to decide. Yeah. Far out. Okay, that’s pretty full on for a 19 year old. Yeah. Yeah, seems like she did a good job. How did she handle this whole mum’s not well situation, this stroke thing? Like how did she deal with it? she was very good. my first memory actually is of her

coming into the ICU with with the with the whole, you know, the whole like the the hairnet and the mask and the and the and the what’s it called the scrubs. Scrubs, yeah. and she held my hand and said t that she loved me. so that was pretty special.

And incidentally I have an a another memory of Guido coming into the ICU as well and singing singing to me. So he he said that he said that I always wanted him to sing and he refused before. And so did did I want him to sing to me now? And I squeezed his hand or on the on the left he’s was holding my left hand and I squeezed his hand and so he knelt down beside my bed and started singing.

Wow. Can he actually hold the tune or is he hard to hear? Yes, see he’s he’s very musical. Okay. Thank God. If my wife had asked me to sing a w if I had asked my wife to sing, it wouldn’t have been a good experience at all for either of us. Yeah, he was he was a busker in i in his younger years. Yeah. and now he decided to come good. Fair enough. Well that that’s important. You know, things like that are important. It lightens the the mood and it makes Yeah.

You kind of feel like your family’s around and that you know you know, maybe kind of things might be all right. Like it gives that glimmer of hope. Is that how you received it? Yeah, I did. yeah, but I’m also very, very determined. So I’m a I’m a very normally very strong woman and so everyone said to me that if if well not to me, but

w we had a we had a group WhatsApp chat so and I was added to it later and everyone said in that that if anyone can get through this, Kylie can. Yeah. So you know when you’re told you’ve had a stroke, you wake up with all the deficits and everything. Are you like how do you take it? I woke up, couldn’t use my left side. I I did not for one minute.

It did not cross my mind like for one minute that this is not a good thing. Like I mean, clearly I wasn’t able to move, etcetera. But it never kinda went a lifesaver, I’m fucked. Like I never had that happen. Me as well. yeah. I I’d I’ve never thought that. I don’t know whether I even thought that

It was n like you said, that was not a good thing. I just put one foot in front of the other and or not literally, but the Yeah. Metaphorically. Yeah. Metaphorically. so one foot in front of the other and just got on with it. Yeah. Nicole, like you come across in your work, you come across a lot of different versions of patience, right? Like you get people who

might just be by design more negative to a bad experience and then people that are half class full to a bad experience. Just from a professional perspective, what’s the difference like when you’re trying to rehabilitate somebody that has kind of that different mindset?

From perhaps what Kylie and I described.

Yeah, I mean I’m probably in the last half full camp as well. So as an OT, I suppose we always meet people where they’re at. because everyone is a combination of their past experiences, aren’t they? So and cultural things, like there’s a very significant cultural differences in how people respond to pain or disability and expectations of kind of family and I suppose cultural expectations in Australia are even about

you know, what what what should be publicly available. So, you know, from an expectations point of view, I think a lot of it is based on, you know, previous experience. So as a therapist, we’re obviously there to support, you know, emotional well being, physical well being, and try and find the things for people that connect with them. So meaningful, like OTs are our absolute core is meaningful occupation. So how do we find something that’s meaningful to that

person that we think is going to get them from kind of, you know, here to there and it’s gonna be very different different motivators, you know. Kylie is probably, you know, very self motivated as described. Sometimes it’s about people really have a d strong desire to get back to work, or people have a really strong family structure that they want to be able to get back to do something with their family. So

finding the way or the thing hopefully that’s going to motivate them. But we certainly work with people who you know, have a high level of distress from what’s happened to them and and on an ongoing basis. One of the things I’ve got a little quote on my desk that you can’t see here, but it says, I’m still me, just a different version of me. And it’s what someone one of my clients told me recently who has MS. and often we find need to find the new version of someone.

and the new meaning for someone if that, you know, needs to happen. So that’s our great challenge, I suppose. That’s a big job, especially very early on when identity is so tied up into who they were literally days ago. You know, like a week ago. The mobile person, the working person, the money making person, the father, the mother, the whatever.

Finding Meaning in Recovery

And then, you know, you’re dealing with a physical crisis, the existential crisis, the identity crisis, like you’re dealing with it all in the one moment, and you’re trying to get them to sort of see, well, you know, you’re still you and how we’re gonna move forward with the still you person, like we’re still gonna move forward with that person. And then later does come an adjustment of what that you looks like.

did for me like it’s a massive adjustment into what me looks like. But my identity wasn’t so much tied up in a one label specifically, although, you know, I s I was the person who felt like they needed to be the main breadwinner, you know, that you know ran a business that did all these things. I I had a big strong identity. But I think one of the things this is going to sound weird or might even sound logical depending on

like w who you are and why you’re listening to this podcast. But for me, the fact that my brain went offline was a really good thing because it and that allowed my emotional side to come to the fore. Like it really enabled me to see things with a different intelligence, you know, and access part of me that my emotional intelligence perhaps that I hadn’t that I perhaps suppressed previously, you know, and just battled through things.

And that kind of allowed my identity to come with me, it allowed me to leave some stuff behind and allowed me to

bring into my identity this emotional side of me, you know, which who cried, who got excited about new and different opportunities, you know, that my head didn’t convince me out of. You know, so there was a lot of silver linings that I didn’t I wasn’t able to iterate back then. I wouldn’t have been able to tell you that it was a silver lining. But now and a few years later, after it all happened, I was definitely able to talk about those silver linings. Kylie

Do you you’re fourteen months or so out, right? So maybe you’re not there yet, I don’t know. But are there some silver and I know a hundred percent Nicole was one of those silver linings, I get it. but do you see some silver linings in this whole saga? Yep. I do. my relationship with my daughter got stronger. Yep. So that was all s that was

definitely a silver lining. and you know, I I’m was very grateful before, but it cemented how g how grateful I am for my circle of friends.

Yeah. Kylie’s friends were amazing. Yeah. Your friends were amazing. Yeah. Yeah. Yeah. Big family still in Australia is is there a big family in Australia, Kylie? Not not a big one, but my mum and dad are still still alive. So they’re they’re in Melbourne. and my sister is in on the Gold Coast and my brother is in Melbourne as well. Yeah. And my and my son is in Adelaide.

Okay. So you still have some family here, but then you were able to create a community in the years before the stroke in Bulgaria. Yeah. you you were doing it a little bit tough after the stroke. Yeah. Correct. Yep. So that’s spot on. Did you Nicole tag team with some of those people as well? Yeah, so Kylie’s friends were beautiful and they were looking after me too. So

When I was in Bulgaria, they were looking after me, you know, giving me dinner and what have you, and kind of giving me emotional support as well. And I think they were grateful that I was there from a skills point of view, like they were doing a beautiful job of supporting Kylie emotionally. But and I did kind of train them up a little bit in in some rehab as well, you know, how to help with approaching from the right and how to communicate and also just even doing some activities.

Kylie and I had the balloon and we were tapping it back and forward to each other for strengthening up the right arm. And then we’d play some kind of word games as we were doing that for some speech therapy. So I was educating her friends around that kind of stuff. But the other thing, Kylie, that you and I have spoken about is, you know, after the stroke is knowing what’s important and how to let some sh shit go that would have been, you know, annoying or you know.

focus on something and now it’s just you you just know it’s just not important. Yeah. Being able to just let crap go. Correct correct. and the other silver lining is that I got engaged. Yes. Did he propose soon after? Yes, in the in the rehab hospital. what a romantic Yeah. But he but he said that he’d

already decided before the stroke that he wanted to marry be ma be married to me. So he just hadn’t got around to asking me yet. Yeah, fair enough. That stroke has a way of interrupting people’s plans and the things that they think they’re gonna do. so Nicole you normally treat your patients. They get to a stage. Usually they’re a lot

better than they were when they first met you. And part of what you do is you send them off into the big wide world like a kid. I’ve grown you know, I’ve raised them, you know, like they know how to comb their hair now. And you kinda send them off and it’s kind of bittersweet, I imagine, but also a very important part that the people who you’re helping get better actually go off into the world on their own.

And stop needing to be supported by you. I know there’s some people who need more support and that continues for longer and some people who don’t get enough and it and it’s never enough. But what’s it like knowing the job is not done, but you still have to leave and go home? that was heartache. I mean, Kylie and I both balled our lies out. it was a long flight home. Yeah. Yeah, it was a long flight home.

with lots of reflections. I suppose the good thing at that point was Kylie was easily able to speak on the phone or message each other. So and also, you know, I think at that stage maybe I got to see the brain scan and I was just like, my god, how have you even survived this? ‘Cause I think was it about a seven centimeter bleed, Kylie? Yep. seven and a half.

Yeah. To be precise. It truly felt like a a miracle. And again, full kudos to the surgeons in Bulgaria, truly, for that acute care. Because I think Kylie, I feel like you were in surgery in about within about two hours or something after the stroke, which is phenomenal. And, you know, your friends really saved your life. taking you straight to the hospital and prevented like, you know, more serious outcomes from the stroke. So yeah, so for me,

I was proud of myself as well. and I, you know, I like to live my life by thinking I can look myself in the mirror. And I felt like I can really I’ve got a tear, really look myself in the mirror. Yeah. Doing the right thing. Yeah. Yeah, yeah. Yeah. You came to the need of somebody who was in need and needed specifically not only your love and support as a friend, but also your skills. Like you had the complete package for them at that time.

How long did you end up staying in total? Was I ra away about just under two weeks probably with the flights and everything like that? So yeah. so yeah, leaving was leaving was horrible. But the goal of being able to go to the toilet was met. and also just the skills for, you know, skilled up a few other people and Kylie, you know, had her good networks.

I also went out to Kylie’s property out in the village to have a look at any home modifications. So that was another kind of OT type role that that was done. and she’s got an amazing property out there, but it is kind of needs a bit of love and so that was also just reassuring her partner too, like reassuring Guido that no, look, Kylie’s got this. There were a few times where it was like, Nicole, I don’t want her to do this. Like I’m like Guido, she’s safe. She can do it.

She’s got sitting balance. She’s okay to sit over the side of the bed. She can wiggle sideways. But he was anxious. And so again, part of my job was to reassure him to make sure that he let her do things. and didn’t step in too quickly. And so as an O T, we’re all used to like sitting on our hands and taking time and letting people struggle a bit. And it was hard for him to let Kylie struggle. So to just encourage him to let her struggle a bit so that she could do it herself and just wait. Just

take the time, especially with communication. so yeah, I I kind of obviously knew there was a lot more rehab to be done, but I also had seen Kylie’s determination and that, you know, she kind of knew what to do. and and so that was I I was grateful again for that. Kylie, what was it like when your friend had to leave? I was heartbroken.

The Impact of Caregiving

I felt like she was a lifeline and I felt like that that had been cut because obviously she speaks English and obviously like

Obviously we have a really good relationship. and I felt like I was in a like how do I describe it? In a in a sea of

not n of people not understanding. So yeah, not my friends, but the hospital staff, basically. So not the not the physios. Like Nicole said, the physios were exceptional. but, you know, just the hospital staff. Yeah, just generally speaking. So did you feel like she had put you on the right path? Were you more confident with

kind of where she left you as opposed to where you guys started and was that enough to kind of give you the foundation for what you needed to take responsibility for when she left? Definitely. yeah, definitely.

Yeah. Man, w what a kind of interesting whole situation. You know, if this was fifty years ago, there’s no way anyone’s going anywhere to help anyone with anything. you know, like your hospital s experience in country like Bulgaria after what they’ve been through would have been completely different. You know, your s the chance of surviving telling your story is probably s you know, very much

decreased. I know this is gonna sound weird, but like it’s never been a better time to have a stroke in in most of the world. Like let’s face it. the the possibilities are just endless. I’m a miracle from all the medical professionals that put all their time and effort in. I am eternally grateful to my occupational therapists and physios and surgeons and people who invent X ray machines and people who make C T scanners and

The plastic bottles where drips go in, like every single thing is just an an absolute miracle of God or medicine or science or I don’t care what, like whatever you want to call it. And it just to me, it you know, here’s a really terrible situation and here and and but look at all the amazing things that came out of it. Somebody from the other side of the planet to be able to come over and intervene in that way, train people up. Like, man, it’s the

Perfect like feel good story, you know. Everything’s going okay, things turn shit, and then something good comes out of it and yeah hopefully there’s more good to come, you know. Like, man, it’s just an amazing experience. I just feel really privileged to be able to hear it and share it further. No, not not not me, personally.

but now that you say that I will s I will think about it now. the most thing that that Nicole and I reflect on is, you know, like like we’ve already said, how good was that my friends got me to the hospital quickly? How good was the the surgeons the surgeons

because it could have all gone wrong. or gone gone a different way. so that’s the stuff we reflect on more. and just just like my amazing recovery.

Reflections on Recovery and Gratitude

Because I recovered so quickly and so well, like I’ve thrown everyone away here. So so my new my neurologist, my my physios, ever everyone here is like well, back then was like really surprised. So we it’s when I first walked into the n neurologist, she said, like, wow,

No one expected you to recover that quickly from such a severe stroke. Yeah. That’s such a good outcome. I like to I like to think that those things wouldn’t have been possible without your most amazing superhero friend Nicole. Nicole, your final thing I’d like to kind of run by you is that your whole career you’re working towards making things better.

Yep. Like for people who are going through all really difficult times. have you had you ever dealt with a family member who needed your intervention or family friend or someone like that that needed an intervention with your specific skills before this? man. yes. So when I was quite a young therapist, probably in my early twenties, my dad told me that his

One of his like great aunts or cousins elderly relative had had a stroke and she was in hospital and I didn’t really know her. Like she wasn’t someone in the family that I I had knew had known. And I said to Dad, I’ll go and visit her in hospital. And and so I went to the hospital and I found out she was in this room and I walk into the room and there were four people.

And I see this gorgeous little old lady who is all crumpled in her chair and squashed and nearly falling out. And I I just walked in and I was horrified. And I just walked straight over to her. And I just said, look, can I help get you more comfortable, get you into a better position? And then I realized it was it was my own relative. and I said to her, I’m Nicole, I’m John’s daughter. you know, dad’s asked me to come and see you. And and she just said the most cutest thing ever. She said, when you walked into the room.

You just look so lovely and I hoped you were here to see me, but I I wouldn’t have known what I could have done to deserve that or something something dead cute. anyway, she’d had a very dense stroke and they were basically saying that she wasn’t a candidate for rehab and that she should go straight to a nursing home. And her daughter was a nurse.

And she said, Nope, Mum’s not going to a nursing home and she ended up taking her home and I used to go every night after work and do rehab with her. she ended up being able to walk quite with a pretty awkward gait and a and a stick. but she got back to, yeah, walking and living at home and I just again always think that if she didn’t have her daughter, the nurse and myself, she probably would have ended up not not walking. Yeah, being in a nursing home.

It’s not that quality of life. So there’s people who definitely go through that. And what I love about you sharing that part of the story is there’s people listening and they’re paying attention and maybe they haven’t been given the amount of therapy that they feel they deserve or need. And maybe that’s going to trigger people to go, you know what, stuff this, I’m gonna find a way to get more therapy, I’m gonna ask. I’m gonna hassle some people, I’m gonna be a pain in the butt to some people, I’m gonna do more.

for myself to get me further. I love that you shared that part of the story. That’s kind of the unique experience that a that a a seasoned occupational therapist can kind of impart on us who are early on in the recovery about like how you need to advocate for somebody or yourself for more physical therapy. And and even if you

Can’t access that people listening and watching YouTube channels. Go to YouTube. There are a ton of awesome therapists on YouTube showing people how to do exercises at home. Yeah. And I mean, I just took some really basic things. We s I, you know, stole some things out of Kylie’s flat to take in. And Guido’s son gave me some toys and we use those like stacking things to, you know, do rehab with Kylie’s hand. I took some pegs from her house and we made

an activity of pegging up the curtains to do shoulder and arm rehab. So you can often do a lot without, you know, complex equipment as well. Yeah, brilliant. Well, Kylie, what a friend, huh? Yes. Yeah. As if she wasn’t a good enough friend already. Yep. I really appreciate you guys reaching out, joining me on the podcast, sharing the story from

your unique perspectives. it’s so good to get that kind of a story and have it told in two perspectives, in one sitting. I wish you both well in your future work and Kylie in your recovery. And I really I I’m very grateful to have been able to have this conversation with you both. I’m just gonna say you’re my superhero, Kylie, seriously, the effort and the rehab.

yeah, do not want this about me. yeah, seriously. Thank you. That means a lot,

Bill Gasiamis (1:03:44)
Well, that’s it for another episode of the Recovery After Stroke podcast. What stays with me most is how much of Kylie’s recovery came down to the people around her. A nineteen year old daughter signing consent forms she never expected to sign, a friend who dropped everything, retrained hospital staff, and fought for something as basic as Kylie’s dignity in using the bathroom on her own. If this episode raised questions for you about who’s actually positioned to make decisions for you in a crisis,

It might be worth having a conversation with your own family. And if you want to hear another Stroke Survivor story of navigating a stroke far from home, go back and listen to Kristen Taylor’s episode Stroke Abroad. If this episode meant something to you, share it with someone who needs to hear it today. And if you want more on rebuilding identity and finding transformation after the stroke, my book.

The unexpected way that a stroke became the best thing that happened is available at recoveryafterstroke.com/book. If this show has helped you, you can support it at patreon.com/recoveryafterstroke. I’m Bill Gasiamis. Thanks for listening. I’ll see you in the next episodnineteen-year-olde.

 

The post Kylie Ralston: Stroke, Bulgaria, and the Friend Who Flew Across the World appeared first on Recovery After Stroke.

How Making a Stroke Recovery Documentary Helped a Former One-Percenter Reclaim His Life

Shayne DeMarce spent most of his adult life defined by physical strength. He rode Harleys through the Canadian Rockies in every season, ran a plumbing and heating business, and had recently begun prospecting with a one-percenter motorcycle club drawn there, he says, by the brotherhood at a time when his wife’s cancer diagnosis and a failing business were pulling the rest of his life apart. Then, on a low-speed group ride at under 20 kilometres an hour, his back wheel slid on loose gravel. To avoid landing on a fellow rider, he dove off his bike into a ditch and broke nine of his twelve ribs, his collarbone, and his scapula, punctured a lung, and tore his aorta.

What nobody caught for another thirteen hours was that he’d also had a stroke.

A Low-Speed Crash With High-Speed Consequences

Shayne’s accident is a reminder that the danger in a fall isn’t always where it looks like it is. He walked away from the crash site convinced his injuries were broken bones, painful, but familiar territory for a man who’d spent a lifetime playing football, doing judo, and dirt biking. It wasn’t until he was in the truck heading to hospital, feeling suddenly and inexplicably worse, that anyone suspected something else was happening. By the time doctors in Edmonton confirmed it was a bilateral carotid artery dissection that had cut off blood flow to his brain, the left side of his body was already gone.

He spent five months in hospital and ICU, then seven more in inpatient rehab. Non-weight-bearing for most of that time, he had to relearn how to exist in a body that no longer matched the identity he’d spent decades building.

Losing the Body He Built His Identity On

“I was a physical guy,” Shayne said. “My job was physical, everything about me was physical. So it wasn’t just my identity; it really was who I was.” For a man whose sense of manhood was tied to strength, work capacity, and being able to hold his own, losing the use of half his body wasn’t just a medical setback. It was, in his words, “very humbling.”

The turning point came from an unexpected source: a blunt question from the principal at his rehab facility’s education centre. When Shayne told her his only goal was getting his body back, she asked him plainly, “So what if you don’t get your body back?” It’s a question that stroke survivors and their families rarely get asked directly, and it’s often the one that needs asking. Shayne describes it as heartbreaking in the moment, and something he’s since come to be grateful for.

Why He Turned to a Camera Instead of a Gym

That question pushed Shayne toward a skill he’d never have considered before his stroke: typing, then editing, then filmmaking. He describes teaching himself to type as doing more for his affected hand than any of his occupational therapy, and it opened a door to something bigger. Once home, he noticed a gap: plenty of content from doctors and news stations about stroke, but very little from survivors themselves, talking honestly about what recovery actually looks like.

So he started the UpStroke Podcast. Then, within days of getting home from inpatient rehab, he set himself an ambitious goal: make a full-length stroke recovery documentary about his own experience, and finish it within six months. No film background, no crew, no guaranteed audience just early mornings, self-taught editing, and a refusal to let pride keep him from trying something that scared him.

Making a Stroke Recovery Documentary From the Ground Up

The finished film runs 55 minutes and represents hundreds of hours of work planning, scripting, filming, and re-filming after the inevitable rookie mistakes (forgotten microphones, unrecorded interviews, background noise nobody caught until the edit). Shayne interviewed his own kids and friends for the film, describing the process as “ripping the same band-aid off fifty times a day for six months straight.”

What makes a stroke recovery documentary like this different from a polished studio production is exactly what makes it valuable: it was built by someone still living the recovery it documents, using the same self-taught persistence he’d once applied to fixing pipes and riding through winter.

Screening the Film for the People Who Understand It Most

The most meaningful moment of the entire project, Shayne says, wasn’t a premiere or a review; it was screening the documentary at the rehab facility where he’d been an inpatient, for a room that was roughly 80% stroke survivors and staff. He remembers patients in that same gymnasium who never had a single visitor in six months, and he now sees his film and podcast as a way to reach exactly those people: the ones running out of hope in a system that doesn’t always have room to give them much of it.

A New Club

Shayne no longer rides with the one-percenter club he’d started prospecting with before his accident. He describes his community now as “a bunch of stroked out strokers,” the friends, fellow survivors, and families he’s met through the podcast and the film. It’s a different kind of brotherhood than the one he set out to find, but by his own account, it’s the one that’s carried him.

His documentary is now available free on YouTube, so that as many stroke survivors, caregivers, and healthcare professionals as possible can watch it.

If Shayne’s story resonates with where you are in your own recovery, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, walks through ten tools for recovery and personal transformation built from these same kinds of conversations: recoveryafterstroke.com/book.

If this show has helped you, you can support it at patreon.com/recoveryafterstroke.

Footer 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.

The transcript will be available soon…

The post The One-Percenter Biker Who Turned His Stroke Into a Documentary appeared first on Recovery After Stroke.

Why Your Stroke May Not Be Causing Your Brain Fatigue

For a long time after my brain surgery, I assumed my body worked like this: the stroke happened in my head, so whatever went wrong afterward would also happen in my head. Fatigue, brain fog, slow thinking all of it filed under “neurological,” all of it explained by the injury I already knew about.

That assumption turned out to be wrong, and the way I found out was almost accidental. About eighteen months after my brain surgery, I had thyroid surgery to remove a nodule so large it had pushed my windpipe and esophagus six centimeters out of place. I had no idea it was there. No lump I could see, no difficulty swallowing or breathing that I’d noticed. It was found only because I had a chest X-ray to rule out an infection, and a doctor spotted something that had nothing to do with why I’d walked in.

What followed was a slow, confusing recovery from that second surgery, and a wave of fatigue I automatically blamed on my brain, because that was the injury I already understood. It took time to realize the fatigue might be coming from somewhere else entirely: my thyroid.

Hormones and Stroke Recovery: The Connection Nobody Talks About

I brought this experience to Dr. Robert Hedaya, a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, to understand what actually happened, and to ask a bigger question: how many other stroke survivors are dealing with fatigue, brain fog, or mood changes that they’ve written off as “just the stroke,” when the real driver is a hormonal system that’s quietly stopped working properly?

Hormones and stroke recovery turn out to be far more entangled than most of us are told. As Dr. Hedaya put it plainly: the brain is a hormonal organ. Thyroid hormone, cortisol, testosterone, estrogen every one of them acts directly on brain tissue, and every one of them can be knocked off balance by the stress of a major medical event.

Why “Normal” Thyroid Bloodwork Can Still Mean Something’s Wrong

One of the most important things Dr. Hedaya explained is that a “normal” TSH result doesn’t rule out a thyroid problem, especially after a stroke. TSH is a signal sent from the pituitary gland, and if a stroke has affected the brain’s signaling pathways, the pituitary itself may not respond the way it should. A survivor can have genuinely low thyroid hormone while their TSH sits comfortably inside the standard reference range, because the system responsible for raising that number in response to a deficiency isn’t functioning correctly.

He also raised a striking data point: population studies suggest the average TSH in a healthy population is closer to 1.4, yet most labs still use an upper reference limit of 4.5, a range wide enough, statistically, to miss a real problem. His advice for survivors going into a GP appointment: ask specifically for TSH, free T4, free T3, and reverse T3, not just the standard single-marker test, and come prepared with symptoms written down if a doctor pushes back.

A Nodule That Grew in Silence

The brain is a hormonal organ. It’s an immune organ. It’s a neurological organ… there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems.

-Dr. Robert Hedaya

My own nodule is a case study in exactly this kind of silent progression. Dr. Hedaya explained that because it grew inward rather than outward, it never created the visible lump most people associate with a thyroid problem, and because it didn’t press on my vocal cords or laryngeal nerve, I never developed the hoarseness that might have flagged it sooner. My body adapted gradually, and the fatigue that eventually surfaced was easy to misattribute to the injury I already knew I had.

Cortisol, Stress, and the Difference Between Pain and Suffering

Beyond the thyroid, Dr. Hedaya walked through the role of cortisol, the body’s primary stress hormone, and why survivors often struggle to answer a deceptively simple question: “Are you stressed?” His distinction between pain and suffering is worth sitting with: pain is often unavoidable, but suffering is shaped by the story we tell ourselves about a situation, and a stroke can compromise the very brain systems that regulate that stress response in the first place.

Testosterone, Estrogen, and the Brain’s Need for Hormones to Rewire

The conversation closed on sex hormones, testosterone and estrogen, relevant to both men and women, and their role in neuroplasticity. Dr. Hedaya drew a direct comparison to adolescence: the teenage brain rewires itself while hormone levels are surging, and the same principle applies after a stroke. A brain trying to rebuild pathways needs adequate hormonal support to do that work. Without it, recovery can stall in ways that have nothing to do with effort or physiotherapy.

What You Can Do About It

If any of this sounds familiar fatigue that doesn’t track cleanly with other recovery milestones, or symptoms a doctor has waved off as “just stress,” Dr. Hedaya’s PNIE (psycho-neuro-immuno-endocrinology) questionnaire is a useful starting point.

PNIE Questionnaire download: https://drive.google.com/file/d/1S7kC5uMFgBfS-gWcUOIHp0kOjGnrzZK5/view?usp=sharing

If thyroid function specifically is what you’re navigating, the earlier conversation with Dr. Elena Zinkov, “Stroke Fatigue and Thyroid,” goes deeper into that piece (https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/). And for more from Dr. Hedaya, the first conversation on photobiomodulation and stroke recovery is a good companion listen (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/).

Getting your body back after a stroke is rarely just about the brain. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, goes further into the mindset shifts that came out of my own recovery (recoveryafterstroke.com/book). And if this podcast has helped you, you can support its continuation at 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.

Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns (Interview)

A baseball-sized thyroid nodule hid in plain sight after Bill’s stroke. Dr. Hedaya explains the hormone testing every survivor should ask for.

Support The Recovery After Stroke Podcast

Bill’s Book: The Unexpected Way That a Stroke Became Thethe Best Thing That Happened

Highlights:

01:45 Hormones and Stroke Recovery

02:11 Understanding Thyroid Function and Its Impact

17:07 Navigating Thyroid Health with Healthcare Providers

27:09 The Role of Stress and Cortisol

39:09 Nutrition’s Impact on Brain Recovery

Transcript:

Hormones and Stroke Recovery

Bill Gasiamis (00:00)

And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters.

And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. that was the first sign that there was something wrong with my thyroid

Bill Gasiamis (00:19)

Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today I’m joined again by Dr. Robert Hedeya, clinical professor of psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, whose highland approach to brain health first brought him onto the show for our conversation on episode 404, where we discussed, amongst other things, photobiomodulation, a type of transcript.

cranial laser therapy helping some stroke survivors recover lost function. He’s back today for a conversation I wanted to have for a while, the hormonal side of stroke recovery.

We’re going to talk about thyroid function, cortisol, and stress physiology, and sex hormones like testosterone and estrogen, and why every one of these systems can directly affect how well and how fast your brain recovers.

I’ll also share my own story of a thyroid nodule that grew undetected, which was discovered after my brain surgery completely by accident.

if this conversation resonates with you, my book, The Unexpected Way That a Stroke Became Thethe Best Thing That Happened goes deeper into the mindset shifts that shaped my own recovery. You can find it at recoveryafterstroke.com/book. And if you’d like to help keep this podcast going, you can support it financially at patreon.com/recoveryafterstroke.

Bill Gasiamis (01:46)

Robert Hedaya, welcome back to the podcast.

Dr Hedaya (01:49)

Thank you for having me, Bill.

Understanding Thyroid Function and Its Impact

Bill Gasiamis (01:51)

thank you for being here. The last conversation we had was very well received. And it’s always difficult in a one hour interview to ask all the questions that we could possibly ask about the brain and stroke recovery and all the things that people go through. And…

I’ve got a lot of other questions that are related to the brain and the link between other parts of the body and the brain, because we have this sense. Well, I did at least when I was first diagnosed that whatever happens in my head is kind of isolated, that it just impacts my head. But there seemed to be some other impacts and cascading effects.

that were occurring, uh, that I didn’t know were linked to the brain injury,

Dr Hedaya (02:45)

Yeah.

Bill Gasiamis (02:46)

maybe indirectly, but they were perhaps. But one thing specifically that happened to me about, uh, 18 months after my brain surgery was I had thyroid surgery to remove a nodule on my thyroid. And when I was going through the recovery after that,

surgery, I noticed that I had fatigue and I thought it was neurological fatigue related to my brain surgery. But it took a long time to develop an understanding that perhaps that batch of fatigue was related to my thyroid. And then that got me thinking all sorts of things. know, if the thyroid also causes the same neurological fatigue that

brain injury causes, what people might be missing this in their healing from a brain injury, they might have a compromised thyroid and not know about it. So the first question is, what is a thyroid? What does it do? And why does it cause neurological fatigue?

Dr Hedaya (03:54)

Okay. So thyroid gland sits in the neck, right? There’s two lobes, there’s one on the right, one on the left, a little kind of island in the middle called the isthmus, and and it controls many functions, metabolism overall, energy overall, just broadly speaking. now it affects the immune system. It’s affects the nervous system.

It affects the gastrointestinal system, it affects the muscles, it affects the heart, right? It affects the skin, it affects the nails, it affects the hair. You know, and I could go on and on and on. Okay?

Bill Gasiamis (04:34)

Wow.

Dr Hedaya (04:35)

Now the interesting thing about this is that this be a little technical, but the thyroid puts out a hormone called T4 or thyroxine, and this is a little molecule with four iodines in it on it, and that

Gives you about 20% of the activity of your thyroid hormones in your body. But then that T4 goes all over the body to different tissues, and each tissue can has its own system to change that T4 into T3 by removing an iodine. T3 has 80% of the thyroid activity. So that means each tissue in the body can control how much thyroid it.

It’s using and needs, right? And and has available to it. Okay. So that means the brain, the heart, the liver, the lungs, every tissue has its own enzyme that allows it to kind of modulate how much thyroid, right? Now, so why does that cause neurological fatigue? Well, thyroid in the brain affects neurotransmitters like adrenaline in the brain, which is called nor norepinephrine, noradrenaline. in order for that to work.

The T3 has to be in the right amount for the receptors for the noradrenaline to be structurally correct so they can transmit the signal. It’s necessary for production of energy in all the brain cells. It helps the immune system in the brain. It carries molecules from here to there in the brain. it affects serotonin transmission in the brain, so mood regulation, anxiety, obsessiveness, depression.

You know, those are just some of the functions of the brain, but it affects every cell in the bane in the brain. So you’re gonna, if your thyroid is off, most likely you’re gonna have some kind of brain problems, particularly, you know, when your thyroid is off, the tissues in your body that are most compromised or most stressed, that’s probably where it’s gonna show up, right? And in the case of stroke, that’s where it’ll show up.

Bill Gasiamis (06:44)

So it’s possible then, is it possible to overlook it? Is it very obvious that your thyroid is out of, well, is dysregulated or is not working properly?

Dr Hedaya (06:56)

Well, in general it’s easy to detect. And if you want, I’ll tell you how. So

Bill Gasiamis (07:04)

Yeah. Tell me how.

Dr Hedaya (07:07)

so there’s some blood tests that are simple and then s some symptoms. so for most people this holds. When your thyroid is low, you know, you’re gonna be cold easily, you’re gonna have dry skin, brittle nails, hair will fall out.

Muscles will be weak, thinking will be slow, movement will be slow, getting up from a chair will be more difficult, going upstairs will be more difficult, your heart rate will slow down, you’ll be constipated. Those are the most common symptoms. If your thyroid is overactive, then you could be have palpitations, oily skin, acne, oily hair.

Diarrhea, you know, kind of the opposite. The thing that’s a little confusing with the thyroid is sometimes overactive thyroid can show up and look like it’s underactive symptomatically, or vice versa. So you really need the labs. And the labs are TSH, which is thyroid stimulating hormone, and that’s tells you what the brain is doing. And then free T4.

That’s the amount of T4 that’s kind of floating around free, not bound to protein, so it can actually do its job. The way I think of it is like, you know, a lot of the thyroid home is sitting on a bus. It’s not free, it’s bound to protein. Can’t do its job. But the stuff the thyroid this that’s out of the bus or not on a protein, that can do its job. That’s the free T four. And then the free T three, right, which carries eighty percent of thyroid activity.

And then the last one is a reverse T3 because sometimes if your tissues in your body are making too much thyroid or getting too much thyroid, they’ll actually, instead of taking the iodine off the T4 molecule on the right side, they’ll take it off on the left side, or vice versa. So they make a fake T3 that doesn’t work. And this way they short circuited okay, you got all this T3. Well, let’s make it into a fake, fake T3 so it can’t do anything.

So reverse T3 is also very important. And then you want to measure body temperature. Usually it’ll be low. And then, you know, a physical exam. Those are the ways to do it. If you wanted to go even deeper, you could do some genetic testing. There are genes that will tell you whether you’re converting the T4 to T3 in the brain.

Adequately, or maybe you’re more likely to be slow in that regard. So you can have normal numbers in your blood, but your brain might be hypothyroid, right? And there are actually a lot

Bill Gasiamis (10:05)

Uh-huh.

Dr Hedaya (10:05)

of studies showing that hypermetabolic, like high doses of free T3, actually reverse treatment-resistant depression because it’s it’s thought that there’s a local in-brain.

hypo-low thyroidism. You can have low thyroidism in your heart, in your muscles, but not in the other tissues, you know, because I told you every tissue can control how much it’s making. So if you have a genetic vulnerability, then you you might more be in general be more likely vulnerable to depression or to ADD or to anxiety, things like that.

Bill Gasiamis (10:42)

Wow. Are you blowing me away? I didn’t expect to hear any of the things that you just said. X. Um, some of the things that you described, the, uh, some of the symptoms that you described, had those intermittently in and out all the time, other than a thyroid nodule, which is what I had, which was obvious on a scan.

Dr Hedaya (11:05)

Yeah.

Bill Gasiamis (11:06)

What other things caused the thyroid to not function?

correctly. So is there lifestyle factors that interfere with the thyroid gland and therefore, you know, then have the cascading effect and take off, take all those other things or some of those other things offline.

Dr Hedaya (11:28)

So there a number of causes, right? So first of all, let’s take someone who has had a stroke or chronic illness, right? So you’re under stress and that affects your stress hormones, your adrenal glands, cortisol, etc. Well, if your adrenals kind of poop out, then maybe your body says, Well, I can’t handle all this thyroid, even though the amount is normal, it’s like too much. I can’t handle it, so it’ll make less thyroids. Now you

develop a hypothyroidism. You could develop it just because all the chemicals in the environment, the ha the hormone interrupting chemicals, there are hundreds of those. you could develop it ’cause of nutritional deficiencies like tyrosine is necessary to make thyroid hormone, copper, you know, things like that. I can’t tell you offhand which which nutritional factors, but people can look that up, what nutritional factors are important.

To make thyroid hormone. and then infections like, for example, Lyme disease causes Hashimoto’s thyroiditis, which is an autoimmune where your immune system’s actually attacking your thyroid. COVID vaccination, like the Pfizer and the Moderna vaccine, if you are genetically vulnerable, can also cause your immune system to attack your thyroid. So there are many, many causes, plus there are inherited genetic vulnerabilities and it

It’s not always low thyroid, sometimes it’s high thyroid, hyperthyroidism, like Graves’ disease, right? You can have antibodies

Bill Gasiamis (13:01)

Mm-hmm.

Dr Hedaya (13:02)

that are actually stimulating thyroid activity as well.

Bill Gasiamis (13:06)

Wow. The environmental toxins. we talking about all day, every day household use kind of environmental toxins? I imagine the external of the house, they’re kind of out of our control, right? We’ll talk about like, you know, like pollution or things that are associated to things that are caused that we don’t necessarily control, but internally inside the house or what we expose ourselves to that we can control.

what would some of those environmental toxins

Dr Hedaya (13:38)

Well

Bill Gasiamis (13:39)

be?

Dr Hedaya (13:40)

so for example, you know, in your produce, you know, there are pesticides, or in the man made materials in your car or the man made materials in your home. Let’s say you bought a new home and you have, you know, some kind of synthetic floors or furniture with synthetic materials or materials that are natural that are treated with chemicals for various reasons. Those things all can be not everyone is, but many of them are called homes.

hormone interruptors because they actually can change the way your hormones function. You know? So we’re the truth is we’re bathed in these chemicals. They’re everywhere. And very hard to escape them. The best thing you can do is kind of try to detox them using a healthy diet, a lot of crucifer vegetables and lots of vegetables, above ground vegetables that are grown in healthy soil.

Without pesticides, organic preferably, right? and then there are supplements you can take, such as metagenics makes something called UltraClear Plus, which helps support the liver, and its detox functions. You know, some people are more vulnerable than others, but you know, these thyroid nodules you like you have, they’re very, very common now. Very common. And that’s you know.

In large measure, I think these hormone interrupters that are interfering with how the the thyroid follicles in the thyroid gland are operating.

Bill Gasiamis (15:13)

Is it possible to have thyroid nodules and not know about it? I, I

Dr Hedaya (15:18)

Yeah.

Bill Gasiamis (15:19)

say that because I had nodules that were the size of a baseball, apparently in my throat that were growing inwards, that didn’t make a lump outside of my throat, which

Dr Hedaya (15:33)

Yeah.

Bill Gasiamis (15:34)

I was not aware of. And the way they found it was they did a chest X-ray after brain surgery because I wasn’t recovering well.

to check my chest to see if there’s an infection. And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters.

Dr Hedaya (15:52)

Wow.

Bill Gasiamis (15:53)

I’m not sure what that is in inches. And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. But that was the first sign that there was something wrong with my thyroid before that.

there was no sign of it. I ask that because either I’m totally oblivious or it is possible to have thyroid nodules and not know it.

Dr Hedaya (16:23)

Well, most people don’t know it. Now yours is so massive, but I think it’s kind of what you said is how it grew. If it grew towards your vocal cords or your laryngeal nerve or something, you would have had some pretty bad hoarseness or something like that. But it grew I guess backwards so it didn’t interfere that much. And I guess your s your body adapted gradually over time. You know, yes, it’s very possible for sure. Very common.

Bill Gasiamis (16:49)

And

how would somebody interact with a general practitioner, for example, now to go through the process of understanding, A, their thyroid health and whether or not they have any nodules.

Navigating Thyroid Health with Healthcare Providers

Dr Hedaya (17:02)

I mean in other words, given what we’ve talked about, how should they approach their doctor basically?

Bill Gasiamis (17:07)

Yeah.

Dr Hedaya (17:08)

I guess I would say go to AI, get a list of the symptoms of low thyroid or high thyroid or all of them, check them off. So then when you go to the doctor you have a list, check your temperature, check your pulse, although the doctor will should check that. And then you could say, look, I have these symptoms, or maybe you don’t have any.

But if you do, you have these symptoms, and clearly thyroid hormone levels can affect the brain. And I’d like a TSH, a free T4, a free T3, and a reverse T3. That’s it. And if they

Bill Gasiamis (17:45)

Okay, perfect.

Dr Hedaya (17:46)

say, no, no, we don’t need to do that, you know, a lot of times what they do, they’ll just do a TSH. Or they won’t do the reverse T3. They don’t, unfortunately, look at the thyroid gland in a dynamic way. They say,

the TSH is fine. If your thyroid was low, your TSH would go high. We don’t need to do the rest. But that’s not true. That’s not true at all. Because especially if you had a stroke, your pituitary function may be compromised. Your TSH may be fine or low and your low thyroid. As matter of fact, in the last interview, the case that I talked about, who referred me to you, she actually had a low TSH, but she had a very low, I think it was a free T4.

Or free T3 or both, whatever it was, but she had too little thyroid hormone, and her pituitary couldn’t respond because of the stroke.

Bill Gasiamis (18:37)

understood. So that’s a great list of

Dr Hedaya (18:37)

So so be you have to be

dogmatic and you say to the doctor, look

Even put into even put into AI and say, look, if the doctor comes back to me and argues against these tests, what should I say? You gotta be prepared because the doctor will steamroll you. You know, that they only allow this, they only allow that, I’ll only do the free T4. Well, that doesn’t tell you how much has been converted to T3, free T3, and it doesn’t tell you, even if the free T3 is normal, that doesn’t mean you’re not overproducing thyroid and and dis

you know, and neutralizing it with the reverse T three. So, you know I mean I I mean I think it’s s so important that a thorough look is is really important. If you have the symptoms, you know.

Bill Gasiamis (19:22)

I agree with you. That list of to-dos, I’m gonna put that on the show notes. People can go and get that list if they don’t wanna go into AI themselves or they haven’t got the time or whatever. They can just download it from there. And then they’ll be able to take that and begin a conversation with their general practitioner. What’s interesting is that I’m in Australia, you’re in the United States. My general practitioner is pushed back when a…

when a patient will turn up and say, I have these tests? They’ll say, well, no, you don’t have any condition that is obvious that you need these tests. So it’s not covered. So you don’t need to do it. So my next suggestion to them is no problem. Order the tests and I’ll pay for them. Now it’s not ideal, but if you’re not going to do them for me and I need to know, cause it’s my health, I’m going to pay for them. So just tell me how much it is and I’ll find a way and I’ll make it happen and I’ll pay for it. So that’s another option.

Dr Hedaya (20:17)

Yeah.

But if you go in with your symptom list, right, and you say, Well, that’s not true, because these are the symptoms, you know, that I have, here they are, right here. You can take a look, you know. And then the last thing I’ll say, this gets even more tricky, is the reference range, I’m sure in Australia, but certainly in the United States, the reference range basically is of the TSH, the pituitary home.

Is 0.5 to 4.5, meaning you anywhere in that range and your TSH is normal. That is a bad reference range. And I know it to be a fact because I I I guess I won’t waste your time with it, but I did a study on a hundred people and with a very sensitive thyroid test called a TRH stimulation test. and I was able I hired a statistician to calculate this.

And say, well, I don’t want to keep doing this test on everybody. What TSH predicts an abnormal TRH stimulation test? And he came back and said to me, Well, once the TSH is over 1.4, it starts to increase your odds of having an abnormal TRH stimulation. So I said, okay, so 1.4 TSH is my cutoff, right? That’s in my mind. I said, okay, that’s that’s my cutoff, that’s when I get suspicious.

Later, several years later, a paper came out, a large, large study, called the NHANES Study, Nurses Health, and I’m not sure what it stands for. Thousands of people followed over many, many years, over decades, and they found the mean TSH in the US population is 1.4. So, right where I what right where my study found. So that means statistically, it is not.

impossible to have the upper limit of the reference range being at four point five because statistically the upper limit is never more than two standard deviations.

So even if your standard deviation is 1.4, which it can’t be, you you’re not going to reach 4.5, right? Unless you have a it’s called a bimodal distribution curve. If you have that, then you’d say, well, it it could be. But we don’t have that with thyroid. So that reference range is wrong. The upper limit of the reference range should be 2.5. And about half the endocrinologists in the United States believe that. And half say, no, no, no, don’t change it.

So that’s another sticky point because, you know, easily people get a result and they’ll go to the doc and say, no, the reference range is 4.5. You’re normal. Then you could say, well, look, I have these symptoms, and they could do a literature search. What’s the normal reference point? What in in the N A N HANES N-H-A-N-E-S study? It’ll show you 1.4. and you could take be prepared to go to the doctor and say, Well, here’s a study that suggests that the reference range may be incorrect.

and I have symptoms by the way. We don’t treat the lab, we treat the person. So could we give a trial? Just a trial, there’s no harm done, you know, trial. Let’s see let’s start at a very low dose. Let’s see how I feel. Maybe I’ll get better. I’ll come back in a month.

Bill Gasiamis (23:45)

Yeah, I love that. It’s really good advice, especially coming from someone who is a doctor who think is thinking on the same way as me, for example, the patient. Because that’s like a match made in heaven. And that’s so rare to be able to get that. Often, my challenge to my general practitioner was well, the reference range isn’t that average of a sick population, because it’s usually a sick population that comes to see you to get bloods. It’s

It’s not the most healthiest people that come to see you to get bloods. And that’s kind of how I try to like start the conversation of convincing a general practitioner to do a test that they’re reluctant to do. And when I say they’re reluctant, I’m not in there every day. I’m not in there every week. And I’m not putting stress on the system to an extent where I’ve been over using the system. I’m not at all.

in there once, twice a year, maybe, you so if I’m in once, twice a year, well, then, I’m not mucking around. Like I’ve come there to investigate something that I’m suspecting is wrong with me. It’s my body. I’m feeling something. had a bit of a look online. This is what I suspect. Don’t try and convince me out of my thinking or my instinct more better. Why don’t we just, work together to get to the bottom of it. If it is something it is, if it’s not, it’s not, and that’s okay. Not a big deal. I’m better to know.

then not no, I think, you know, it’s better to be safe than sorry in my mind.

Dr Hedaya (25:16)

Yeah. I would

I would only think only correction I would make is the reference ranges generally are made on normal populations. Now now the thing is who’s normal anymore? Number one. Number two, that’s a statistical norm that doesn’t tell you anything about your genetics.

your vulnerabilities, it’s not an individualized statistic. I mean it’s it not an individualized thing. What’s your normal range? And are you out of your normal range? Nobody can answer that, right? Unless you had previous data before you were ill. And you say, well look, I’ve been running at a 1.1 for five years or 10 years and now I’m at 3.2. That’s a big change. Well, you know you’re stressed. Well yeah maybe but here are my symptoms. Always come back to your symptoms.

Bill Gasiamis (26:11)

Got it, got it.

Dr Hedaya (26:12)

No.

Bill Gasiamis (26:13)

You use the word stress just now and my general practitioner says, I might go in and some bloods might be out of whack or some things might be not feeling great. And he’ll say, are you stressed? And I’m like, well, I’m not stressed. like, I’m not stressed in any way that I can say is worse than normal. For example, I’m

Dr Hedaya (26:35)

Mm-hmm.

Bill Gasiamis (26:36)

just, you know, I’m attending to my clients at work.

picking up the kids from school, I’m, you know, making sure the bills are paid. Like I’m just doing the normal things that I always

Dr Hedaya (26:48)

Right.

Bill Gasiamis (26:48)

do, which tend to be stressful. And somehow when we talk about stress, cortisol seems to come into the conversation.

Dr Hedaya (26:57)

Mm-hmm.

The Role of Stress and Cortisol

Bill Gasiamis (26:58)

And I don’t know how to respond to a general practitioner who says to me, am I stressed? Because I’m not experiencing something extreme or dramatic.

in the months before I came to see him. So can we have a conversation a little bit about stress, cortisol, what is stress, what is cortisol, are they linked? Tell me about that, give me your thoughts.

Dr Hedaya (27:21)

Okay.

Okay, so this is a multi-layer system. Okay, it starts with your perception and your of a situation and the story you tell about you the story you tell yourself about the the situation and your need for control of a situation and as opposed to saying I’m in the flow of the universe and

All right, this is you know, this is the way it is, and I’ll adapt to it. Not so easy by the way, but it’s a much healthier way because most things will not stress you. Now, pain, let’s say you stepped on a nail, you’re gonna have stress, okay? Totally stressful, etc. But there’s a a difference between pain and suffering. Most of our problem is suffering. Suffering is a result of thinking patterns.

perspectives of yourself and the world and the future and blah blah blah. I could talk about that for a long time. And that is probably one of the most important places to intervene and to train yourself, etc. Now, once this thing is registered as stress, it goes through back to the hypothalamus and the pituitary where all those hormones are controlled, the hypothalamus and pituitary in the brain, now you’ve God forbid, you’ve had a stroke.

Those things may be affected, therefore, those systems may not be working well. In that case, you may not be able to handle stresses that you used to handle. You may not you may not have those shock absorbers. So, how do you measure this? I think the way you measure it again are symptoms, and typically it would be low cortisol and low DHA, d DHEA, and low pregnenolone.

And the symptoms would be a lot of fatigue, right? Maybe poor wound healing, muscle aches, body pains, getting sick more easily, cognitive slowing, depression, anxiety, extreme exhaustion, salt cravings, in unstable temperatures, you know, I would say yeah

You know, th loss of appetite in severe cases, you know, dizziness on standing. Okay. So those are the low adrenal output things. Now how d how do you measure and again, you think you have a problem, go to an AI thing, make that list, check it off, whatever applies, and you know, work yourself up symptomatically and then ask well, okay, what what are the best tests here? What are the

best test. Now the way I test it is I get morning I got a morning like eight to nine a.m fasting ACTH and cortisol. It’s gotta be in the morning around between eight and nine a.m.

fasting. I also at the same time get a D, like David, H E A and a D H E A sulfate, and then I also get a pregnenolone. And if I think there’s any kind of sex hormone problem that I want to check, then I will check a free testosterone, FSH, LH, and

The testosterone measures the free testosterone is very unreliable. So if it comes out low, you want to do it two more times to double check that. But the other measures are pretty reliable. And then you’ll you’ll know the other thing you can do is you could do something called a Dutch test, which is a urine test that’ll look at your cortisol through the day, or an adrenal saliva test. It’s ASI, alleval adrenal saliva index, the Dutch test.

or the ASI, both good tests. and those will tell you what’s going on through the day. Like if you’re not sleeping, it could be because your cortisol high at night, you know. Wake up horrible or in pain. Could be because your cortisol is really low in the morning. Really low. You can’t even get out of bed, you know, can’t get going, right? So these are all all things that you can do to measure and then you can replace these hormones and

That’s one thing to do. The other thing to do is to work on how you manage stress. There are millions of ways of doing that, right? From meditation to heart math to

Bill Gasiamis (32:05)

Mm-hmm.

Dr Hedaya (32:06)

yoga to you know, there’s just a lot a lot a lot of ways to

Bill Gasiamis (32:10)

Yeah, let’s go back for a moment and talk about testosterone because when I hear testosterone, I’m hearing you say to a male that I need to have testosterone in my body and at certain levels, et cetera. And sometimes it can fall out of whack and you need to get it tested. I had mine tested recently. It’s all good. But women also need testosterone. Tell me about that.

Dr Hedaya (32:35)

Yeah, so I was I was thinking of both male and female when I said it,

Bill Gasiamis (32:38)

Yeah.

Dr Hedaya (32:39)

because it’s it’s you know, women who are postmenopausal can have it’s much more common to have a low free testosterone loss of libido, you know. testosterone the studies which I’ve reviewed a few times, you know, there’s a debate does it affect the mind, the brain, you know. It seems to have an effect on well being, on

vitality muscles, sex drive obviously, libido erectile function, brain cognitive function, some mood effects, etc. So I I think it’s important now i it it has to be managed in women as well as men. You know, in in women testosterone is a step on the way to estrogen as it is in men, right? And in the metabolism, right?

So it it should certainly be assessed in everybody.

Bill Gasiamis (33:39)

Yeah. And estrogen, mentioned estrogen. Now, one of them in my mind, it seems to be more associated again to women, estrogen, especially. And, and then men also have estrogen, need estrogen.

Dr Hedaya (33:55)

Men also have estrogen. I haven’t studied it so I couldn’t tell you, but I imagine it’s doing something. it probably turns men into better leaders after they’re fifty, is my guess. Let

Bill Gasiamis (34:08)

more emotionally intelligent.

Dr Hedaya (34:10)

more emotionally intelligent, less testosterone, you know. You know, I I I

Bill Gasiamis (34:15)

You know what? That’s a good theory. We’ll run with that for now.

I might relate to that, know, who knows.

Dr Hedaya (34:22)

Yeah. I I think

Bill Gasiamis (34:24)

Awesome, awesome, so…

Dr Hedaya (34:24)

Yeah, so w for

for women on estrogen, it depends, you know, who are you assessing? Are you that’s a whole complex subject, you know. Is it a young woman who’s menstruating? Does she have premature ovarian failure, endometriosis, ovarian cysts, insulin resistance, they all kind of travel together, methylation problems, they travel together. is it someone who’s perimenopausal where she’s starting to lose progesterone and getting a lot of PMS?

That’s pretty easy. You can replace the progesterone. Is it postmenopausal a woman who’s just kinda lost the estrogen, lost the progesterone? You know, if there’s a family history of cognitive decline or dementia or something like that, there’s great evidence that transdermal estrogen and some oral progesterone bio bioidentic, not synthetic, is great and reduces the risk for lots of disorders later in life for women. You know. So

there’s a whole you know, there’s a whole way of working all that up, depending on who who you’re looking at. But very important. Now so the let me

Bill Gasiamis (35:31)

Yeah, I love it. Yeah.

Dr Hedaya (35:34)

say this. The important thing here, and this is maybe the most important thing. Someone’s had a stroke, they’re obviously tremendously stressed. You have to look at all the hormones. You can’t the brain is a hormonal organ.

It’s an immune organ. It’s a neurological organ. I used to teach psycho, neuro, immuno, and the chronology at Georgetown for a number of years. Okay? And the brain and hormones, you can’t separate it. So if the brain is under stress, the hormonal axes are under stress, and there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems. Okay? So you must, as part of the work of anyone who’s had stroke.

You must look at the endocrine, the hormonal axis. You know, you must look at it. Why? Because if you’re trying to recover from a stroke and you don’t have adequate hormones, it’s gonna be much, much harder. Much, much harder. Right? But

Bill Gasiamis (36:37)

Peace.

Dr Hedaya (36:38)

if you have if you have the the hormones at good levels, okay, now the the brain has that. If it has its nutrients, it has that, you know, okay, now it can do something, you know.

What happens, think about it this way. What happens in adolescence? The brain is being rewired, the body’s growing, brain is rew being rewired. Where are the hormones? The hormones are skyrocketing. They’re necessary for the rewiring. You had a stroke, you’re trying to rewire brain, you gotta have adequate hormones.

Bill Gasiamis (37:10)

I love it. This is the thing that people miss. You know, we talk about the gap in stroke recovery. Acute phase gets handled

Dr Hedaya (37:19)

That’s

Bill Gasiamis (37:19)

99 % of the time really well. People get patched up and they get sent home in some kind of alive state, whether they are fully functional

Dr Hedaya (37:27)

Yeah.

Bill Gasiamis (37:28)

or working towards it or whether they are less functional and working towards being more functional, like some kind of stage

Dr Hedaya (37:35)

Mm-hmm.

Bill Gasiamis (37:36)

of you’re alive and you’re good enough to go home.

And then there’s no information after that. So how do we assess address? How, what do we know? What do we not know that we need to know? And this is kind of what this conversation is, right? It’s like, okay, here’s

Dr Hedaya (37:53)

Yeah.

Bill Gasiamis (37:53)

a whole bunch of things we’ve just discussed. There might have been things that you heard for the first time. Don’t let that, get in the way of your curiosity and investigate the thing that pricked your ears up, whether it was a symptom that Dr. Hedaya mentioned and just

do a little bit more work in understanding what that is, take that to your general practitioner and begin the conversation of taking responsibility for your recovery. And in my mind, like there’s gotta be like a foundational thing that people can do to intervene that doesn’t cost most of the time anything extra. And that helps encourage and nourish the brain in overcoming these challenges, but then has the

a cascade effect of having the same positive outcome on all the other organs and hormones. And that to me is nutrition. So like, if you’re, if you would suggest to somebody how they might start thinking about their nutrition as opposed to what they might have been doing before stroke, how do you begin that conversation? And what are the two or three fundamental things that they need to consider?

about nutrition.

Nutrition’s Impact on Brain Recovery

Dr Hedaya (39:11)

Okay, so

If it doesn’t grow that way, don’t eat it.

I never saw a bread tree. I didn’t see an ice cream tree or a Twinkie tree. Okay. So if it doesn’t grow that way, don’t eat it. Balance your plate. Balance your plate. And actually our coach, Caroline Hade, is putting out an ebook. I don’t know, should be out at a week or two or three weeks. It’s like, I don’t know, four or five dollars or something.

and that will tell you exactly how to balance your plate. and then I would say very important to have three meals and maybe, depending on your how insulin resistant you are, maybe additionally two snacks. and per day, but keep your calories you don’t want to be overweight, okay, because if you’re overweight, you know, that’s a

That’s its own risk factor for brain problems, right? but you can’t lose weight in a day, you’re stressed, you’re hungry, you’re tired, you eat the carbs, you know, everybody struggles with that. But that that is one of the biggest enemies of eating eating eating these processed carbs that we all love is one of the biggest enemies of your health. One of the biggest enemies of your health for sure.

Bill Gasiamis (40:35)

Okay, there are some great resources that people can again look into how to eat to heal the brain. And we didn’t have to have a deep conversation about that. But I love

Dr Hedaya (40:45)

Mm-hmm.

Bill Gasiamis (40:45)

what you said about balancing the plate. And if it didn’t grow that way, don’t eat it. It’s such a simple thing. If it comes in a packet on a shelf in a supermarket with all fancy pictures

Dr Hedaya (40:59)

Yeah.

Bill Gasiamis (41:00)

and stickers and a list of ingredients, like it’s probably not nutritional.

of food. It’s probably something that’s going to make inflammation worse. It’s probably something that’s going to give you the type of energy that is not helpful. It’s probably going to have a whole bunch of other things. And that’s kind of my approach to healing and recovering my brain. It’s one of the first things I did was just look at my nutrition, immediately stop smoking and drinking. mean, I know

it should go without saying, but sometimes you have to have a stroke for it to actually sink in and make sense. and don’t have any alcohol at all. I’m talking about forever if you can, but I didn’t have alcohol

Dr Hedaya (41:46)

Yeah.

Bill Gasiamis (41:47)

for at least the first four or five years. And now in the next five years or so, maybe I had one glass per year, just because I was, in an event where it was, everyone was drinking and it was almost necessary to have

sip or half a sip or act as if I was drinking. So with that, I think we’ll wrap up this conversation today. There’s been a lot for people to digest, go back and listen to it a second time. And a third time that we have some resources in the show notes. And Dr. Hedaya, thank you for joining me again. And I look forward to our conversation that’s coming up in a few weeks time where we’re going to talk about toxin load and neuroplasticity.

Dr Hedaya (42:29)

Beautiful. Thanks so much for the opportunity, Bill. I hope I hope people get something out of this and they pursue what they need to pursue.

Bill Gasiamis (42:36)

Well, that’s a wrap on this conversation with Dr. Robert Hedeya. If there’s one thing to take from today’s interview, it is this. The brain is a hormonal organ and recovery isn’t just about the brain healing in isolation. Thyroid, cortisol, testosterone, estrogen, all of it is connected, and all of it is worth checking if your recovery has plateaued in ways that don’t quite make sense.

Dr. Hadea’s free PNIE questionnaire is linked in the show notes. Download it, work through it, and take it with you to your next GP visit. If you want to go deeper on the thyroid piece specifically, go back and listen to the earlier episode with Dr. Elena Zinkov on stroke fatigue and thyroid.

And if you missed it, the first conversation with Dr. Hedeya on photobiomodulation is a great companion to this one. if this episode has helped you, share it with someone who needs to hear it. That’s genuinely the best way to help this show reach more survivors. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book.

And if you’d like to support the show financially, you can do so at Patreon by going to patreon.com/recoveryafterstroke.

Until next time, take care of yourself and don’t assume it’s just a stroke.

The post Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns appeared first on Recovery After Stroke.

Aphasia and Apraxia After Stroke: Michelle Clemens’ Nine-Year Fight to Get Her Words Back

At 25, Michelle Lee Clemens had the career she’d been planning since she was eleven years old. She was an Emmy-nominated news anchor and reporter in Green Bay, Wisconsin. She ran marathons. She wrote her own stories. Talking, as she puts it, was her life.

Then a heart infection called endocarditis set off a chain of events that almost ended it. Her vision blurred. Specialists floated theories: leukemia, diabetes, cancer, rheumatoid arthritis. One doctor drew twenty-three vials of blood. Another gave her injections in both eyes. Weeks later, pain in her calf led to blood thinners. And when she arrived at a Green Bay emergency room feeling desperately unwell, the doctor’s first assessment was that Michelle was having an anxiety attack.

Her father, a paramedic and firefighter, pushed back: “No, it’s real.” A CT scan proved him right. Michelle had bleeding in her brain. She was flown to a larger hospital, underwent three brain surgeries, and spent a week in a coma. At one point, her pupils were fixed and dilated.

“I was dead, honestly.”

When she woke up, her hair was gone, part of her skull was gone, and so was her speech.

What Are Aphasia and Apraxia After Stroke?

Michelle lives with two distinct conditions that often appear together after a stroke.

Aphasia is a language disorder. It affects a person’s ability to produce and process language: speaking, understanding, reading, and writing. What it does not affect is intelligence. Michelle remembers everything about her journey with unusual clarity. As she explains it in this episode:

“In my brain, I’m fluent.”

The words exist, fully formed. Getting them out is the battle.

Apraxia of speech is a motor planning disorder. The brain knows the word it wants, but struggles to coordinate the precise muscle movements needed to say it. For Michelle, the combination means a conversation involves constant, visible work: finding the word, producing it, then checking it was the right one.

During the interview, Bill offers a description Michelle immediately confirms: the word is here in the mind, but it’s not here, at the mouth.

“It’s very frustrating. But it’s me

Living With Aphasia: The Parts Nobody Sees

Michelle describes challenges that rarely make it into clinical descriptions of aphasia.

Fatigue changes everything. Earlier in the day her speech flows more easily; by mid-afternoon, after teaching three exercise classes, the effort of talking compounds. Writing was affected too after the stroke, she says, her writing “was a joke,” which mattered for a journalist who wrote her own scripts.

Then there’s the loneliest part. Asked about the hardest thing she faces beyond speech itself, Michelle names friendship. Her close friends live in Washington and Green Bay, not nearby, and building new friendships is difficult when conversation itself is the barrier. A lunch invitation sounds simple, but when speaking is hard work, connection stays shallow. People judge. Some assume the halting speech means lost intelligence. It doesn’t.

Yet the same woman who names that isolation also describes cruising as her favourite therapy, talking with international crew members who speak English as a second language, where everyone communicates imperfectly and nobody judges.

“Talking is therapy.”

Recovery Beyond the Plateau

Michelle was told what many stroke survivors are told: that recovery plateaus, that progress stops. Nine years on, she is still disproving it.

Not even a year before this interview, she decided to start eating with her affected right hand. In July 2025, year eight of her recovery, she flew to Denver for a week-long meditation program and describes the improvement in her hand afterwards as “unbelievable.” She has tried dry needling. She still attends speech therapy, having started with twenty-six weeks at Northwestern, and keeps working toward the fluency she is determined to reclaim.

Her license plate reads DETERMINED.

Today Michelle works four jobs: personal trainer and group instructor at her local gym where she coaches other stroke survivors, documentary producer, motivational speaker, and author. She wrote her book about her story alongside her father, Vince, who wrote his own account of the same events; for him, she says, the early-morning writing was its own therapy. In 2027, she’ll present her story at Lambeau Field in Green Bay.

What Michelle’s Story Offers Other Survivors

Three things stand out from this conversation.

First, self-advocacy can be lifesaving. Michelle’s brain bleed was initially read as anxiety. Her father’s insistence on a scan changed the outcome. If something feels wrong, keep pushing.

Second, the plateau is not a deadline. Michelle’s hand function improved in years eight and nine. Recovery timelines are longer and more open than many survivors are led to believe.

Third, communication is bigger than fluency. Michelle gets her message across in jumbled order and all and asks mainly for what every person with aphasia deserves: patience and a conversation partner willing to wait.

Bill has written about his own version of this long arc of recovery in his book, The Unexpected Way That A Stroke Became The Best Thing That Happened, which shares ten tools for recovery and personal transformation – you can find it at recoveryafterstroke.com/book.

You can find Michelle’s book and speaking information at michelleclemens.com, and her book is also available on Amazon and Barnes & Noble.

If this show has helped you in your own recovery, you can support it at 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.

Michelle Lee Clemens – The News Anchor Who’s Winning Her Words Back (Interview)

A news anchor’s stroke at 25 was dismissed as anxiety. She woke from a coma unable to speak. Nine years later, she’s proof recovery never stops.

Links:

MichelleClemens.com

Recoveryafterstroke.com/momentum

Recoveryafterstroke.com/book

Patreon.com/recoveryafterstroke

Highlights:

00:00 Introduction to Aphasia and Apraxia After Stroke

03:27 The Day of the Stroke

12:32 Life After the Stroke and Writing a Book

15:21 The Journey of Communication and Aphasia

23:37 The Role of Family and Community Support

28:09 Navigating Relationships and Social Connections

31:01 Therapeutic Approaches and Personal Growth

35:43 The Power of Storytelling and Future Aspirations

46:30 The Journey of Recovery

Transcript:

Introduction to Aphasia Aphasia and Apraxia After Stroke

Michelle Lee Clemens (00:00)

I have no friends. I I I understand. I I

I have a conversation with myself and my brain, but speaking is hard and we are going to lunch or whatever. Well I wanna it’s nothing because it it’s it’s

It’s no close it’s a cl it’s not a close relationship.

Bill Gasiamis (00:33)

Welcome back to Recovery After Stroke. My guest today built her entire career on her voice and then over the course of one week lost it. before we get into it, I want to be up front about something. This conversation has been edited, not heavily, but edited because of the exact challenge Michelle is living with aphasia and apraxia.

Making it harder to get words out, and a light edit helps the conversation flow so you can follow it more easily. Even so, parts of this still take a bit more patience to follow than a normal conversation. So I’d ask you to stay with it anyway. What you’re doing as a listener in those moments, waiting, rereading a sentence, letting somebody find the word.

Is a small taste of what Michelle does every single time she opens her mouth. If you live with aphasia yourself, I think you’ll find something encouraging in that. And if you’ve never really understood what aphasia is,

you’re about to get a better sense of it than any definition could give you. Either way, this is one worth passing on to somebody else. And a quick note before we dive in, if you’re feeling stuck in your own recovery, I now offer one-on-one coaching for stroke survivors. It’s not therapy or medical treatment, it’s lived experience support, structure, accountability.

And someone who’s actually been where you are. Having survived three strokes myself, I only work with a small number of people at a time, so it stays meaningful. You can apply at recoveryafterstroke.com/momentum.

And one more thing. If this show has given you something for your own recovery, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book. And if you’d like to support the show directly, you can do that at Patreon by going to patreon.com/recoveryafterstroke.

Here’s my conversation with Michelle Lee Clemens.

BIll Gasiamis (02:39)

Michelle Clemens, welcome to the podcast.

Michelle Lee Clemens (02:41)

Thank you.

BIll Gasiamis (02:44)

Michelle, tell me a little bit about what life was like before the stroke.

Michelle Lee Clemens (02:49)

I was a news anchor and reporter in Green Bay, Wisconsin, USA. And my life was awesome.

The Day of the Stroke

My reporter life was really weird, random.

I’m an EMMY nominated journalist and I loved running. I have I ran six marathons, a lot of half marathons.

and my life was sweet and yeah.

BIll Gasiamis (03:35)

Excellent. Busy full life.

Michelle Lee Clemens (03:38)

Yes, definitely. I I

grateful, okay, and still but I mean my life was peaceful and I have no surgeries, no I hated needles. I mean, my goodness. I didn’t have my ear pierced because I was that scared. Okay. But yeah.

BIll Gasiamis (04:08)

You haven’t pierced now.

Michelle Lee Clemens (04:10)

Yes, yes, I have three okay. Let me let me Okay, I have t c two coils, two plates and a lot of screws.

BIll Gasiamis (04:27)

Okay, understood. All right, so we’ll talk about those in a moment.

What was your age when you had the role as a news anchor?

Michelle Lee Clemens (04:38)

Twenty two.

BIll Gasiamis (04:39)

And how old are you now?

Michelle Lee Clemens (04:41)

thirteen four, but I my accident was five. Yeah.

BIll Gasiamis (04:49)

25,

you don’t look a day over 16. Like you have a very youthful appearance.

Michelle Lee Clemens (04:57)

I know, right?

BIll Gasiamis (04:59)

So you had a stroke at 25. Tell me about what that day was like and what happened.

Michelle Lee Clemens (05:05)

My dad drove to the hospital because I had endoritis. It’s a heart infection. And in April I have the heart infection and I was fine and

I’m going home my dad was here or in Green Bay and

My vision was weird. I went to a eye doctor and he said a different doctor.

I went to a rectus specialist and he said maybe leukemia or diabetes or cancer or RA and my mom has RA. it’s yes, sorry. And

BIll Gasiamis (06:12)

All right, is that rheumatoid arthritis?

Michelle Lee Clemens (06:16)

And I went to the RA doctor and the doctor said maybe first thing first we need to have blood, okay?

The doctor took twenty three vials of blood.

BIll Gasiamis (06:38)

Wow.

Michelle Lee Clemens (06:39)

To rule out a a infection okay? It was ten minutes, mind you, okay? It was a long time. anyways, I I had a EEG or whatever. and my first EEG or and I had a heart infection.

condition or heart infection. Two days after I went to the eye doctor a rude a different eye doctor and I had two shots in my eyeballs.

BIll Gasiamis (07:30)

2, 1

Michelle Lee Clemens (07:31)

Two shots in my eyeballs. Yes.

BIll Gasiamis (07:34)

injections

which you don’t like.

Michelle Lee Clemens (07:39)

Well, exactly, but I it’s it’s exactly. And

BIll Gasiamis (07:44)

to do with those shots?

Michelle Lee Clemens (07:46)

I was

not seeing a lot. I was a news anger and I needed to see the problem proper and I didn’t see well. Yeah. And my boss was furious. I have no choice. And

BIll Gasiamis (07:48)

Uh-huh.

Michelle Lee Clemens (08:12)

That happens. And anyways, three or one or two weeks ago I had a pain in my calf. And my dad is a paramedic and fireman. And dad, I’m not feeling

Well, I and my dad and I went to the ER and he the doctor said I’m we need to s have blood thinners. Okay. I have no idea but doctors said right and three days after

my dad drove to a different appointment and my or me and I didn’t see the one and

Late I had my brand new medicine.

Dad, I’m not feeling good. And okay, my dad said, maybe five minutes we’re figure it out.

We drove to the ER in Green Bay and

The doctor assumed the doctor said Michelle has a anxiety attack.

BIll Gasiamis (09:49)

gosh, he thought you had an anxiety attack.

Michelle Lee Clemens (09:51)

Right. And my dad said, No, it’s real. And okay, fine. the doctor had a cat stat stand and I had blood in my brain. I flew

to a great possible for my care. I I have

I no sorry.

was bald. I was I mean I

BIll Gasiamis (10:34)

You had,

you had brain surgery.

Michelle Lee Clemens (10:37)

Yes. Brain surgery. three times. I was

BIll Gasiamis (10:43)

Did they remove your skull? Yep.

Michelle Lee Clemens (10:47)

Yeah, and I was in a coma for one week. I the doctor wa my brain wa my sorry my eyes were fixing dilated. I was dead, honestly.

and the doctor said

really don’t know. And my dad said

This doctor fix hard to fix me and I am a walking talking miracle. my speech was

gone. And s and I mean I have a I mean I have apraxia and aphasia and s I have speech therapy twenty six week. I love it. Go northwestern but anyways I am determined to have

fluency and I mind you I was a news anchor and reporter talking was my life I mean I mean come on and I remember all of this things a lot of people you are not remembering after

BIll Gasiamis (12:12)

Hmm.

Life After the Stroke and Writing a Book

Michelle Lee Clemens (12:32)

memory is so clear. I mean still I have s post traumatic stress disorder because it is that clear. And I mean I am I wrote a book because

story is so powerful. and I

It’s right here. I mean my my memories are so clear and I am My license plate is determined. I mean, I am determined.

BIll Gasiamis (13:04)

Determined

Well done.

Ha

Great

stuff. Tell me about waking up from your stroke and then realizing that there’s something serious going on. Your hair, your beautiful golden hair is missing and skull was missing and you couldn’t talk. that would have been difficult. How difficult was that?

Michelle Lee Clemens (13:17)

I

I I have no idea but my hair? What happened?

Okay. Maybe a car accident.

I have I mean what I mean for my IV wha what what happened? I mean really what happened and I mean I have

idea and later

my parents said you have aphasia huh what is that i mean honestly and i have no idea i mean it’s a cancer i don’t know i i have what happened and later i realized but i had no have glas contacts and

my vision was off. I needed glasses. And then it was a hot mess, but I was so tired. every ounce.

BIll Gasiamis (14:38)

So you also couldn’t see.

Messing with it.

Can you describe what it’s like to have aphasia? It’s actually aphasia awareness month at the moment. So can you explain what it’s like? Because some people who come across you who don’t know about a stroke and don’t know about aphasia think that you lost your intelligence or something, but you remember everything, your intelligence is intact. The challenge that you have is getting words out. Is that getting words out difficult?

Michelle Lee Clemens (14:53)

Yes, yes.

Yeah.

Exactly.

BIll Gasiamis (15:16)

both verbally and written as well? Is it difficult to write the words as well?

The Journey of Communication and Aphasia

Michelle Lee Clemens (15:21)

Yes. I mean it’s varies. but yes, it’s it’s annoying, okay? Because I love to talk, okay? I mean talking talking was my life. I decided that I am going to anchor the news. I was eleven.

Okay? I was so excited. I mean, yeah. And I mean why not? Anyway, sorry. I await my tradition, aware not sorry, aphasia is

I mean definition, I’m sorry, but it is maybe it is

BIll Gasiamis (16:10)

Hmm.

Michelle Lee Clemens (16:16)

Okay.

Okay, there it is.

Sorry.

BIll Gasiamis (16:21)

No, it’s okay. Take your time.

Michelle Lee Clemens (16:22)

Okay.

My bad.

I’m really sorry.

It’s a different strip. There it is.

Okay.

Not quite.

my goodness. I’m really sorry, hold on. Okay. Okay, I got it. Sorry. I have a indivisible invisible disabilities. aphasia is a language disorder that a person

BIll Gasiamis (16:34)

No stress about all good.

Michelle Lee Clemens (16:57)

Capability to to communicate. And what does that mean? I mean

We know but we are not talking because it is so it’s it’s

Not in jumbling, but I mean it’s it’s

BIll Gasiamis (17:24)

So is the word here, but it’s not here. But not here.

Michelle Lee Clemens (17:26)

Yes, right here. Right here. Sorry. Right

yes. It it it’s it’s it’s very frustrating. but it’s me

BIll Gasiamis (17:43)

Okay, so you have worked really hard to get to this point since the stroke. So nearly nine years now. And when you woke up, did you have any of this version of conversation that you have now?

Michelle Lee Clemens (17:49)

Yes, yes.

n I mean my I not really no. I I mean I was I didn’t

BIll Gasiamis (18:06)

you

Hmm.

Michelle Lee Clemens (18:14)

And I had to write, okay, but my writing was a joke. I mean still I have I have no idea. yeah.

BIll Gasiamis (18:30)

Hmm.

So

that’s cool. So how do you go about your day now? What is your day involve? I know during the week that you would have therapy, speech therapy and all that kind of stuff, but how do you occupy your time?

Michelle Lee Clemens (18:46)

Well, good question. I have four jobs. yeah. I am a personal trainer and instructor in at a local gym and I liked pe I like to help people with exercise. I

I have a lot of stroke survivors and I mean you can do it. I did. I was almost dead. I mean I mean I have what I had a one personal living, honestly. And I am a walking talking miracle and I am a documentary producer and a motivational speaker and

A author.

BIll Gasiamis (19:42)

Well, sounds like you’re still keeping very busy just like you were when you were a new.

Michelle Lee Clemens (19:47)

Yeah, I

exactly. I mean I I mean mind you, I had no job until a year ago. And I’m grateful.

BIll Gasiamis (20:03)

Was it difficult to go back to work at the gym as an instructor? it, like, was it really tiring and stuff?

Michelle Lee Clemens (20:07)

Well

Huh.

yeah, it’s still. But I mean, it’s my work is really relaxed, honestly.

BIll Gasiamis (20:21)

it’s

small amount of hours over two days. So it’s easy to manage.

Michelle Lee Clemens (20:24)

Exactly.

Exactly. Exactly. I mean and the other w job is a online job.

And it’s very awesome, huh?

BIll Gasiamis (20:39)

How would you describe the support that you had from your family? I know your dad, Vince, is your co-author. Tell me about how that went.

Michelle Lee Clemens (20:47)

Yes, ex my

well my dad and my me are has a different story. I wrote my story and my dad has a different story. yes, but my family was very

to support or still. I’m honestly living in my parents’ house because I’m still

not I’m not wealthy, okay. I need money, first of all. And yes. But I mean I’m my book is not I mean I like my book. I’m not spending I mean not spending I mean my goodness. My profit was two dollars.

BIll Gasiamis (21:44)

doesn’t make a lot of money.

Yep, I believe that.

Michelle Lee Clemens (21:52)

Yes.

Yes. Or yes. I am not I mean I love to read or not. I love to write. I mean I am not whatever. But it was a great thing for me. And my dad said it’s a great it was a great thing for my dad because

It’s honestly it was therapy, okay? And he early morning he wrote the pod, not pod, sorry, blog and it was a great thing for my dad.

BIll Gasiamis (22:42)

Yeah, great, great way to get it out and kind of put it out on paper.

Michelle Lee Clemens (22:45)

Exactly. And then and

then I mean I I was a news celebrity in Green Bay and a lot of people a lot of people said

I I was I’m praying for you or or something else. I mean, they the community was awesome in Green Bay. And and my home t ho hometown honestly. My hometown was very supported for me and I’m grateful.

BIll Gasiamis (23:13)

a lot of well wishes.

Mm-hmm.

Mm-hmm.

Yeah, some of those hard times. How do you get through those? Did you seek out counseling? Did you speak to therapists in other areas other than just your family?

The Role of Family and Community Support

Michelle Lee Clemens (23:37)

Well, I tried. I mean I I thought I am a

I am living. I’m not caring because I am a walking talking miracle. And I tried therapy and I didn’t like they were sorry but not effective. I am I my outcome or not outcome but my personality is so

Awesome, I don’t know what it’s very, but I had an accident. Okay. Keep going, okay? I am determined. And I mean it’s a sucky.

BIll Gasiamis (24:13)

Yeah.

Move on,

So therapy is,

formal therapy is kind of not your thing. It’s you’re into doing projects, writing books, going to the gym, helping people out, doing rehab, overcoming your personal challenges.

Michelle Lee Clemens (24:37)

Yeah!

Well yes.

Yeah. I mean I had P T O T and speech and then I still have speech. But

I mean, my my mental is really good. I am a yes, my yeah. Yeah, I mean I am really grateful and it’s a it was a messed up situation, okay. I was I spoke for gr my graduate or

BIll Gasiamis (25:00)

You make your health. That’s awesome. It’s very good.

Michelle Lee Clemens (25:22)

High school graduation and college graduation. And my speech is gone. But it’s I mean it’s funny but not. And I mean sorry.

BIll Gasiamis (25:32)

but weird.

It’s funny but weird at the same time. Like it’s bizarre, isn’t it? You’re relying on your speech for your everything. And then the only thing that goes away is your speech. What about physical deficits? Do you have any stiffness or pain or anything like that?

Michelle Lee Clemens (25:37)

Exactly. Exactly. And

Every.

I was paralyzed with my right hand or everything. And I still have a lot of tightness and it’s my right everything is different. I mean

BIll Gasiamis (26:16)

I see.

Michelle Lee Clemens (26:17)

Yeah. But I mean, I’m using it. I mean it’s I have I am able to drive. I I mean it’s I have a a sp wheel. And yeah. It’s yeah. It it it’s awesome. It was on Amazon and I mean it’s

BIll Gasiamis (26:34)

a little one of those little dials on the steering wheel.

Michelle Lee Clemens (26:46)

I really I’m grateful.

BIll Gasiamis (26:50)

What are you grateful for specifically?

Michelle Lee Clemens (26:54)

my life. I mean I was dead. I mean honestly I was dead. I remember a lot. And

I

My God is amazing.

BIll Gasiamis (27:05)

What’s the most difficult thing that you face other than the challenge of your speech? What else is the most difficult thing?

Michelle Lee Clemens (27:15)

goodness. I mean my speech, but talking well I don’t really I mean I I didn’t have friends yeah but I have no friends. And I mean is what it is. I mean once in a while, yes, I mean it it’s not okay.

BIll Gasiamis (27:30)

friends.

Michelle Lee Clemens (27:43)

Hear me out. I’m saying I have friends but they are living in Washington and Green Bay and not close by. And I’m I’m used to it. I don’t care. I I

It’s okay. My speech is sorry. My speech is a problem because

Navigating Relationships and Social Connections

BIll Gasiamis (28:10)

Is it? Is.

Michelle Lee Clemens (28:16)

I have no friends. I I I understand. I I

I have a conversation with myself or and my brain, but speaking is hard and I w let me we are going to lunch or whatever. Well I wanna it’s nothing because it it’s it’s

It’s no close it’s a cl it’s not a close relationship.

BIll Gasiamis (28:45)

Yeah, so aphasia is a barrier, a barrier.

Yeah. So

aphasia is a barrier to having meaningful conversations with people that create friendships.

Michelle Lee Clemens (29:01)

Right, and I mean I had a boyfriend, he was

not normal or not no no sorry yes but he was not he didn’t have aphasia. What is that? I mean he wasn’t really normal. And we broke out I mean three it wa I was sorry

three years for the relationship trip. Actually in Sydney, Australia. Yes. On a cruise, mind you. Don’t ask. It was a hot mess, but a different topic, huh?

BIll Gasiamis (29:42)

three years ago.

You broke up in Sydney, Australia?

Okay, so I understand. So you had a boyfriend and you were together for three years and you broke up on a cruise together when you were visiting Sydney, Australia.

Michelle Lee Clemens (30:07)

Yes. Yeah.

Yes. Yep. Yeah. Yeah. I I

BIll Gasiamis (30:18)

Okay, it was a hot mess. Absolutely. I love I know that’s

not a good reason to remember Sydney, Australia. That’s Yeah, you love it anyway. Okay, good.

Michelle Lee Clemens (30:26)

Love it. I love it. I mean, I

BIll Gasiamis (30:30)

playing there. All right. Next time. Don’t forget. So you’ve had quite the journey. It has been a long nine years and you had to overcome.

Michelle Lee Clemens (30:31)

Okay.

You’re right. Exactly.

BIll Gasiamis (30:46)

your right side deficits. So you’re, you’re the way your hand works and your body worked on the right side. You had to overcome speech. have some challenges with relation. you had a trach. Yep. You have some challenges with communicating and then connecting with people as a result of that. I didn’t actually ever consider because I’ve never had aphasia and I’ve never

Therapeutic Approaches and Personal Growth

Michelle Lee Clemens (30:49)

Yeah.

Yeah.

Nice. Yeah.

Right.

BIll Gasiamis (31:16)

It’s never come up in the conversation. I didn’t consider the challenge in creating friendships and relationships with people because the speech is a barrier to having a meaningful conversation over lunch or something like that. And most people, I imagine most people come to lunch, want to make it about themselves. They want to make sure that they talk about themselves and that you talk.

Michelle Lee Clemens (31:28)

yeah.

BIll Gasiamis (31:45)

back about them and there’s a nice circular conversation, but they don’t get that from you perhaps. And they’re not patient and they don’t understand. And they might think that you’re not intelligent and they might judge you.

Michelle Lee Clemens (31:49)

Senate.

Nope. No.

yeah. A lot of judge. I mean Yeah. I mean

BIll Gasiamis (32:04)

A lot of jacking it.

Wow. Well,

I hope this interview raises some awareness and then decreases the amount of judgment and makes people more patient with people who have aphasia. It would be fantastic if we were just able to all get along, even though we couldn’t have regular version of speech or conversation as others. It’s something interesting and different to sit down with somebody who has aphasia.

Michelle Lee Clemens (32:18)

Thank you. Thank you.

BIll Gasiamis (32:36)

and wait for them to make a sentence and spit it out so that you can create a space for that to happen, also so you can have a different version of a conversation. Like all conversations are pretty the same. I talk, you talk, I talk, you talk. But in this case, it’s a different experience to have a conversation with somebody who has a facial. You have to often be quiet and just wait.

Michelle Lee Clemens (33:06)

Yes, exactly. I mean it is I mean, maybe it’s very p annoying and I don’t really know but I my brain is fluent. I mean in my brain I’m fluent. I mean and I am not fluent. I am I I mean, it was a pot it it was a hot mess.

BIll Gasiamis (33:09)

Thank

Michelle Lee Clemens (33:34)

But now I have speech therapy and y I’m grateful. And

BIll Gasiamis (33:39)

Yeah. And it sounds

like you can communicate most things. You can communicate your needs. You can communicate what’s important. It may come out a little jumbled and not in the right order, but it comes out and you can get the message across most of the time.

Michelle Lee Clemens (33:48)

Yeah.

Yeah, I mean it’s weird but hear me out. I loved cruising because a lot of people have a different language mean they live in They the workers live in

China or Jap Japan or yeah it’s different countries. my speech is so clear because I’m talking English and I’m not my speech is not the greatest but

BIll Gasiamis (34:29)

countries.

Michelle Lee Clemens (34:47)

they understand and my goodness thank you i mean it’s very i love cruising because it’s very first of all it’s fun but also it’s not fair but free but therapy for me talking is therapy

BIll Gasiamis (35:12)

therapy.

Yeah, so you’re on the cruise, people are from different nationalities, different cultures, different backgrounds. And when you speak in English, you speak well enough for them to understand and they speak well enough for you to understand and everyone gets along and it’s all fine. Yeah, do you speak when you’re tired? Does your speech get a little harder as opposed to when you’re fresh earlier in the day in the morning?

The Power of Storytelling and Future Aspirations

Michelle Lee Clemens (35:31)

Exactly.

Yes,

yes, definitely. I mean, right now I’m awake, but I mean most of the time, I mean three a at three I’m okay. I’m done. I mean not really, but I need maybe f more food. I don’t really know. I have a lot of

BIll Gasiamis (36:07)

rest, the rest and recovery.

now, yeah, by now your day is kind of winding down and you’re quite tired.

Michelle Lee Clemens (36:16)

I mean, yes, it today I taught to exercise three exercise classes, but and my speech is better with talking. yeah. but maybe tomorrow I’m so tired. I am

I mean n at three I did coffee and b and and I mean yeah.

BIll Gasiamis (37:01)

I understand. So what about your right side at the gym? How do you go managing the right side challenges with gym work?

Michelle Lee Clemens (37:14)

Well, good question. I have I am a personal trainer and I am very strong. I mean mind you I my body is t petite. but I am so strong with my well I take a

The left str is very very strong. The right, I have no idea. I mean, I am here. my phone, it’s very heavy for me. the water bottle, it’s I have no idea.

BIll Gasiamis (37:59)

Okay.

Yeah, okay. So your left side, quite normal, quite strong, really kind of able to lift things, do things. The right side, not so much, a little weaker. A phone is heavy and lifting your water bottle with your right hand is probably not a good idea.

Michelle Lee Clemens (38:14)

yeah.

No.

It

no, I mean I I mean

Not not even a year ago. I took no, sorry, I decided I’m going to eat with my right hand. Okay? It was hard, but I get it. And I mean I I didn’t have a clue, but

BIll Gasiamis (38:49)

Hahaha

Michelle Lee Clemens (38:56)

I’m really excited because I have a a new tool. I mean, yeah.

BIll Gasiamis (39:03)

Yeah, so your hand

is still improving after nine years.

Michelle Lee Clemens (39:08)

yeah, definitely. And my speech yeah. I mean, I didn’t talk. I mean, most of the time the doctors or speech therapist or whatever. I like speech therapist, mind you. But I I mean you’re progr not progressing it’s useful. Okay?

BIll Gasiamis (39:10)

and your speech too.

They say that you’ve hit

the plateau, you’re not progressing.

Michelle Lee Clemens (39:35)

Yes,

co. And no, I am determined, mind you. and yeah.

BIll Gasiamis (39:44)

Unbelievable. So a lot of people watch this show and listen to the show and they’ve been told by doctors after six months that they’ve hit a plateau. They’re not going to continue recovering and they have to give up and all that kind of stuff. And it’s crazy to hear, but your proof that your right hand is starting to show improvements and starting to become useful again. And you have started using it to eat.

Michelle Lee Clemens (40:11)

Yes. And

BIll Gasiamis (40:13)

Do you drop all the food or are you doing a good job with it?

Michelle Lee Clemens (40:17)

Yeah,

I mean I am using my fork and my spoon, not the f knife. Save it first. but don’t it’s weird but hear me out. I different therapies. Okay. I had drive needling with for my

everything honestly for my hands. Okay, fine. And a week a er no thing. in

July? Yeah, July twenty twenty-five. I flew to Denver to have a meditation with for for a week. My hand is unbelievable.

Amazing after meditation. It’s so weird. It’s I mean, it’s very weird, but it’s helping. And I I mean most of the time I am meditating and it’s helping me.

BIll Gasiamis (41:23)

Right.

That’s excellent. Meditation is really helpful. It changes your body. It relaxes things and it gets blood flowing and it gets the nervous system relaxed. And then if it gets you out of your head, you don’t overthink things. Things flow more easier. Does speaking require you to do a lot of extra thinking about how you’re going to get the word out?

Michelle Lee Clemens (41:42)

Yeah.

BIll Gasiamis (42:11)

or how does that happen? Because I see you have the idea of the words and then I see you say that and then I also see you, once you’ve said the word, confirm that you said the correct word.

Michelle Lee Clemens (42:26)

I have no idea. I’m sorry, but I have no idea because I’m fluid with my for my brain or whatever. I am not sure.

BIll Gasiamis (42:28)

Okay.

That’s okay. You don’t need to have that’s all right. That’s fine. Perfect. So now let’s talk about the book briefly. You, how long did it take to write?

Michelle Lee Clemens (42:39)

Sorry.

Yes.

Well, it was a long time because I have post traumatic stress to order and my vision is really clear and I stop and then rescrew and then stop because it’s a big deal.

BIll Gasiamis (43:11)

So many years.

Michelle Lee Clemens (43:13)

Yes, many years.

BIll Gasiamis (43:15)

And what’s the book about?

Michelle Lee Clemens (43:17)

My story. My I was a news anchor and reporter and and this happened. and I remember everything. I mean very it’s weird but it’s awesome. And my my book is my story.

BIll Gasiamis (43:45)

your story. It’s a lovely idea to have a book. I appreciate that because I wrote a book for a similar reason to help other people, to inspire them. It was therapy for me too, to get that stuff out and put it in writing. when I sell the book, there’s not a lot of profit. There’s not a lot of money, but it’s almost not about that, is it? It’s really not about that.

Michelle Lee Clemens (43:45)

I mean, yeah.

And I’m I I bought I mean a not a lot of books but a lot of books. I have in twenty twenty seven I am presenting my story in Lambo Field in Green Bay, Wisconsin

USA and I’m presenting my story. I mean it’s Lambo Feel. Okay, awesome. I mean I like to have I like motivational speaker gig

BIll Gasiamis (44:56)

Yeah.

You’re also speak motivationally. also have that little gig. That’s awesome. So you also have a website where you can go and get some information and get the links to your, the different things that you’ve done and go and see your reels and go and grab a copy of the book. What is the website? Tell me the website.

Michelle Lee Clemens (45:08)

Yes.

Yeah, definitely.

Thank you.

MichelleClemens.com

BIll Gasiamis (45:28)

michelleclemens.com. It’s also available on Amazon and Barnes and Noble.

Michelle Lee Clemens (45:33)

Yes.

BIll Gasiamis (45:35)

Well, it is my pleasure to meet you. I really appreciate that you are determined. The book is very well labeled. You certainly appear to be somebody who’s extremely determined. I think you’re doing amazingly well to still be recovering after nine years. And it sounds like you’re very comfortable being

in the rehabilitation and the recovery path still and going for even better speech and even better hand movement.

Michelle Lee Clemens (46:11)

Thank you.

BIll Gasiamis (46:12)

And congratulations on getting back to four jobs.

Michelle Lee Clemens (46:15)

I burnt thank you. I didn’t ask, but I love it.

BIll Gasiamis (46:23)

Yeah, well done. Michelle, thanks so much for being on the podcast.

Michelle Lee Clemens (46:25)

Thank you.

Thank you. Have a good day.

The Journey of Recovery

Bill Gasiamis (46:30)

Well, that’s it for another episode of the Recovery After Stroke podcast. Thank you so much to Michelle for being so generous with a story that clearly still takes real effort to tell. If there’s one thing to take from this conversation, it’s that recovery doesn’t run on anyone else’s timeline. Michelle’s hand is still improving nine years in. Her speech is still improving nine years in. And as she put it herself, my brain.

I’m fluent. The intelligence was never in question. Only the road back to getting out of it. You can find Michelle’s book and more about her work as a speaker and documentary producer at MichelleClemens.com. It’s also available on Amazon and at Barnes Noble. If you’ve been told your own recovery has hit a plateau or you’re just feeling stuck and not sure what’s next, I offer one-on-one coaching for stroke survivors.

Structure, accountability, and support from someone who’s lived it. You can apply at recoveryafterstroke.com/momentum. If this episode helped you understand aphasia a little better or reminded you that the plateau isn’t the finish line, share it with someone who needs to hear it.

For more tools for your own recovery, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at Recoveryafterstroke.com/book. And if the show has been valuable to you, you can support it at Patreon.com/recoveryafterstroke.

I’m Bill Gassiamas. Thanks for listening, and I’ll see you on the next episode.



The post Michelle Lee Clemens – The News Anchor Who’s Winning Her Words Back appeared first on Recovery After Stroke.