Recovery After Stroke

Aphasia Communication App: How One Brother Gave a Stroke Survivor His Voice Back

For four or five hours, Robert Schmidtbauer’s younger brother lay on the floor of their Wisconsin home, unable to get himself up. Robert found him when he got home from a late shift driving cabs. His brother had been drinking that night, but this wasn’t alcohol; it was a stroke, one that would put him in the University of Wisconsin Hospital for three weeks and in rehab for six months.

His brother was already living with ataxia, a rare progressive condition that had taken his ability to walk and had begun to affect his speech. The stroke made it dramatically worse. Today, unless you know him well, you’ll understand only 60 to 70 percent of what he says. It’s usually the end of a sentence, the last few words, the part that carries the point that disappears.

Robert became the translator. For years, every visitor, every relative, every tradesperson needed him in the room to fill in the blanks. Then he built something better: an aphasia communication app called Larry’s Speakeasy, priced at nine dollars for life, now used by people in 20 countries.

When the Speech Problem Has No Official Name

One detail of this story will be familiar to many stroke families: Robert’s brother has never been formally diagnosed with aphasia. The doctors attributed his speech difficulties to the combination of ataxia and stroke and left it there. After a year of speech therapy and his own reading, Robert concluded there was “probably some of that in there,”  but no clinician ever gave the problem a name.

That matters, because a diagnosis is often the doorway to resources. Without one, nobody hands you a communication aid, a device funding pathway, or even a list of options. Robert’s brother got speech therapy two or three hours a week while it lasted, some practice phrases to take home, and nothing else.

The Gap Nobody Warns Stroke Families About

Rehab ends. The communication problem doesn’t.

When Robert’s brother came home, the brothers developed their own system: Robert would catch 90 percent of a sentence, ask him to repeat the rest up to three times, and then ask him to spell the words letter by letter. That was the system for years. Robert credits his stint teaching English online to students around the world for training his ear to listen closely.

But the system only worked when Robert was in the room. The moment that changed everything was ordinary: a new housekeeper came to quote on cleaning, and Robert’s brother, who runs the inside of the house, couldn’t make himself understood on the details. Robert stood in the middle, finishing sentences. He’d felt like a “third wheel” through his brother’s rehab, looking for a way to genuinely help. Standing in that kitchen, he found it.

“I had one person on my wing that no one else in the building could understand but me. And even I had a 50% chance of understanding what he really wanted.” — a care facility director, on why a tool like this matters

What Is an Aphasia Communication App?

An aphasia communication app is software that speaks for a person whose own speech is impaired a modern, affordable form of what clinicians call AAC (augmentative and alternative communication). Larry’s Speakeasy does two things, deliberately kept simple:

Type-to-speak. If your hands still work, you type any phrase or sentence, and the app says it out loud.

One-tap phrases. For people with limited hand function, pre-made buttons cover emergencies (“I need to go to the bathroom,” “call the doctor”) and everyday phrases hello, goodbye, and a growing list Robert adds to as users suggest them.

The market Robert walked into explains why he built his own. At the affordable end, there’s roughly one comparable app at around $13. After that, the next step up starts near $150 and climbs to $7,000–$8,000 for dedicated equipment that requires training and support to operate. Between a cup-of-coffee app and a small car’s worth of hardware, there was almost nothing.

Robert priced Larry’s Speakeasy at $8.99 once, for life. “It’s not here for me to get rich off of,” he says. “It’s my brother, and I want it to help.”

Built With AI, in Days, by a Retiree

Robert is 67, with a background in television and radio rather than software. He’d spent months learning to work with AI tools and, in his words, cussing and swearing at the computer. When the housekeeper moment landed, he posed a different question to the AI: how can I help my brother’s speech?  And had a working version running within about two or three days, refined over the following months.

That’s worth pausing on. The tools to solve a real disability problem at kitchen-table scale now exist for people who aren’t programmers. A determined care partner built, tested, and shipped an aphasia communication app from rural Wisconsin no company, no funding, no advertising. Around 260 people across 20 countries have tried it, and it’s listed as a resource on the National Aphasia Association website.

More Than an Emergency Button

The use cases stretch well beyond the kitchen:

Therapy practice. Practice phrases from a speech pathologist can be loaded into the app and drilled at home with or without a partner.

Video calls. Open the app in one window and Zoom or FaceTime in another, and a person who can’t speak clearly can hold a conversation with family anywhere in the world. Robert saw his own mother’s isolation in a care facility years ago; this is his answer to it.

Care facilities. An iPad on a care cart could let staff understand residents nobody else can and document requests, which protects residents and facilities alike.

Where to Find It

The app lives at LarrySpeakeasy.com, with a seven-day free trial before the one-time $8.99 purchase. Try it, and if it helps, it helps, as Robert puts it; there’s no push.

Stories like Robert’s are why this podcast exists: ordinary people refusing to accept the gap between what the system provides and what recovery actually needs.

If that resonates, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, shares ten tools for recovery and personal transformation drawn from my own stroke journey and hundreds of survivor interviews; you’ll find it at https://recoveryafterstroke.com/book. And if this show has helped you, you can support it at https://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.

Robert Schmidtbauer – Building a Voice for My Brother (Interview)

After a stroke, Robert’s brother lost clear speech and had no tools to cope. So Robert built one: a simple app that speaks for those who can’t.

Highlights:

00:00 Introduction – Aphasia Communication App

01:21 Challenges in Communication Post-Stroke

05:17 Stroke Experience and Recovery

12:20 Communication Challenges and Solutions

17:43 Creating Solutions Through AI

18:03 Introducing the Aphasia Communication App

21:13 Expanding Accessibility in Care Facilities

27:14 Final Thoughts and Resources

29:19 Bridging Communication Gaps

30:14 Resources for Stroke Survivors

Transcript:

Introduction – Aphasia Communication App

Robert (00:00)

If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app.

Lacunar Stroke New Research (00:10)

Hello, everyone, and welcome to another episode of the Recovery After Stroke Podcast. Before we get into it today, I want to say a massive thank you to all my Patreon supporters and to everyone who supports this podcast. You are the reason this show keeps going. And I appreciate every single one of you. If you’d like to help keep these episodes coming, you can support the show at patreon.com/slash recovery after stroke. And if you’re looking for tools to guide you,

On your own recovery, my book, The Unexpected Way that a Stroke Became, the best thing that happened, is available at recovery after stroke.com slash book. Now, today’s episode is a little different. My guest is Robert Schmidtbauer. And Robert is not a stroke survivor, he’s a

care partner. His younger brother was already living with ataxia, a rare condition affecting his muscles and speech, when a stroke six or seven years ago made communication between the two brothers harder than it had ever been. In this conversation, we talk about what it’s like to be the person who translates for someone you love, what happens when rehab ends

and the communication problem doesn’t? And what Robert decided to do about it. Something that might genuinely help other families in the same situation.

Challenges in Communication Post-Stroke

BIll Gasiamis (01:30)

Robert Schmidtbauer welcome to the podcast.

Robert (01:33)

Thank

BIll Gasiamis (01:33)

can you give me a little bit of a rundown on you and your relationship with your brother before he had a stroke?

Robert (01:42)

My brother’s nine years younger than I am, so he’s 56, no, 58 now. And we’ve been living here. He originally got out of high school, went to travel school in Minneapolis, Minnesota, and lived there for a number of years. He has a taxia, and he moved home.

to my mother’s house. Let’s see, we’ve been here 16 years now in this house living together. And he moved home about 20 years ago. Not quite, maybe like 18, 18 and a half. The ataxia took away his ability to walk. I’m not sure if you’re familiar with ataxia, but it’s kind of like in the muscular dystrophy realm. And it’s very, very, very rare.

he attacks your muscles. depending on the seriousness and the kind, there’s like 20 different kinds. You probably wind up dying from it because it slowly affects your muscles. And the first things to go usually are your extremities. In his case, it was his legs and his speech. So when he moved home, he already

had a slight problem talking, not real bad, but my mother built a house and it was very small, just one level.

so that she didn’t really have to walk up and down stairs and that type of thing. And so he was basically sleeping in the easy chair when he moved back home. And I lived across the street. So I said, come on and move in with me, because I’ve got this big house. I was a single parent at the time. I have one son. And I said, there’s plenty of room here. You can have a bedroom and live here.

Stroke Experience and Recovery

And so we lived here. The story behind him and the stroke, I was at the time working as a cab driver at a resort town north of here.

And so I would never usually get home on weekends until like four or five in the morning. And I came home, I found him on the floor. And so he had a drinking problem at that time. And I asked him what was wrong. And he said, well, I’m drunk. I well, how long have you been here? he’d been on the floor for like four or five hours.

My brother is probably 6’1″, or around 6’2″, 230, 240. I couldn’t lift him up. We bought this house as a duplex. My girlfriend at that time lived and rented from us a basement apartment. Even with the both of us, we couldn’t.

get him up. So called the ambulance, we got him in and it obviously wasn’t alcohol, although he had been drinking. He wound up going to, we live in the state of Wisconsin and Madison is in the south part of the state, which is our state capital. They took him to the hospital here and then they flew him to Madison and he wound up

there in the University of Wisconsin Hospital, which is a very big progressive type hospital. And he was there, I think about three weeks before he came back to a nursing home here to recover. And so his recovery before he finally got home, I would say, going back to memory, we never really wrote it down, but probably about six months. He was in the nursing home for a good

three, four months and then in an assisted living type situation where he had his own room, didn’t have to share it, was going through treatment and rehabilitation before he got home. And so then he came and when he was done with that, then he moved back here. So was about a six month process.

BIll Gasiamis (05:37)

How long ago was a stroke?

Robert (05:40)

exactly. I couldn’t tell you to be honest Bill, but somewhere in the realm of six to seven years. I go back, I ran a bar at one time and I’ve been gone from there for four years and this was before that. So I would say between six and seven years ago.

BIll Gasiamis (05:57)

Before COVID.

Robert (05:59)

Yeah, before COVID.

BIll Gasiamis (06:01)

Okay. So when he came back from rehab and the assisted living and came to live at your house, what kind of deficits was he living with?

Robert (06:13)

Excuse me. He still couldn’t walk. He was already in a wheelchair at that time with a taxia. And that didn’t really change much. was worse, obviously, when he first had the stroke, but the rehab helped him to get back to, I would say more or less where he was before the stroke. As far as being ambulatory, he can still stand up. He can still…

function, get into counters and cupboards and things like that. He just, the legs, he just can’t walk. He could crawl on the floor if he had to. And his arms and everything still work, so he could still type. again, this was through rehab, but he pretty much got back to where he was prior to that, except for the speech.

the speech became noticeably worse. I would say even at this time, at that time it was really bad, at this time unless you know him and live with him or have known him previously, you’re probably going to understand somewhere between 60 and 70 percent. It’s usually the last part of a sentence or thought is what

Most people have difficulty understanding.

BIll Gasiamis (07:30)

So is it the ataxia and aphasia that he’s dealing with?

Robert (07:34)

You know, officially he’s never been diagnosed with aphasia. It’s probably more to do with the ataxia combination with the stroke. So the doctor has never really the prognosis or whatever you want to call it. They never really diagnosed them as having aphasia. But after reading up on it and going through therapies,

you know, for speech and other things. And that continued for the better part of a year. It’s kind of obvious that there’s probably some of that in there. But as far as a medical diagnosis, official medical diagnosis, we never really got that meaning from any of the doctors.

BIll Gasiamis (08:17)

Got it. So he came back, he would have had some needs f and you would have had to support him with those, if obviously the walking and then and then whatever other needs. So in that communication early on, were you guys able to actually communicate and you understand what his needs were and help him with what he was asking?

Robert (08:40)

Yes, there was a point and you being a strokes arrival, you know, I have no idea. have AFib and so, you know, kind of runs in our family. So I knew some of what he was going through, but obviously I don’t know what anybody who’s had strokes, you know, have to go through on a daily basis. watching him, there was a point, especially in the nursing home immediately after in the first several months.

I would say that there was major depression. There was a battle. I often quote a movie. There was a line that black actor, what was his name? Older guy that played God. Anyway, came on said one time, you never get busy living or you get busy dying. And so I mean, there came a point.

after like the first month where we kind of had a come to Jesus conversation at the nursing home and it was like, okay, because he wasn’t following their recommendations too much. didn’t really, the therapy and stuff, wasn’t too thrilled and excited to do that. so I mean, through this conversation, it was like, okay, like, look, you know, either.

You try and make the best of the situation and improve or I can’t help you. It’s like alcoholism or any other drug disease. You really have to want to do it, I think, yourself.

And so he’s been dry now for, boy, well, since the stroke, probably close to 10 years now. I mean, he slowed down enough after the stroke, he quit completely. But so, yeah. So I mean, that, you know, the communication.

I could communicate with him in hospital. It was harder, obviously, but, you know, I could still understand him. The one thing that helped me out throughout the period that we lived together, especially after the stroke, was I taught English online. So I talked to people from Saudi Arabia. I talked to people, you know.

from various countries around the world. And that really helped me because I had to listen closely to them. But there are still times where I will ask him, I get 90 % of it and we get to the last couple of words and I’ve got the gist of it, but it’s like, I don’t understand the last words.

He’s come out like, okay, ask me three times. If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app.

BIll Gasiamis (11:23)

Yeah. And it it’s interesting, like you guys all went through rehab, left from hospital, came home, he had a speech issue, and yet you guys didn’t weren’t given a tool or something to help you guys communicate at all. It wasn’t even like a thought for anybody to do that.

Robert (11:45)

No, there was not. I mean, he had speech therapy when he went to the hospital, but that was an hour, three times a week or two times a week. I mean, it wasn’t an everyday type of thing. So yeah. then exercise is when he came home from there that he would, know, phrases and words and stuff that the therapist would want him to practice at home. And even that was…

somewhat of a struggle, because we’re kind of, no disrespect to nationalities, but we’re kind of pigheaded Germans.

Communication Challenges and Solutions

BIll Gasiamis (12:20)

that being said, you come home, you haven’t got the tools, you’re trying to help.

your brother, there is times where you can’t understand what he’s saying. And you think, I know, I’ll create my own solution for this problem. And tell me about th the background that you had that helped you solve that problem and the solution that you created.

Robert (12:43)

Yeah, well, if we go back to, you know, when he came home, because this is obviously been recent, right? It’s because of my background was in television and communications. I worked in television and radio. And so I enjoyed playing with computers when he came home because, you know, we were fairly close family and knew him. I just let him do his thing.

you know, and if he asks for help whenever I was there for him. But I always felt like a third wheel going through, you know, the stuff from him, his his rehab. I take him there and do it, but there wasn’t much except for like the speech stuff to help him be repetitive on that. So it felt like kind of a third wheel. So it kind of settled into

a pattern, you know, unless he needed help, he’s pretty self sufficient. He has a CNA that comes over a couple times a week to make sure that like, when he takes a shower, he doesn’t fall, you know, that that kind of stuff helps with the dishes or cooks a couple meals and puts it in the refrigerator. But I was looking for ways, you know, and trying to think of what a person could do.

Creating Solutions Through AI

Well, So I still work, you know, part time. And through television, I had my own production company and did things on the side all the time. And so I like to be creative. And

a friend of mine who lives in Chicago had a business and we started playing around with AI for about the last six months now. And it’s not as easy as some people say it is, you know, and especially to learn how to use it.

So we started playing around with it. And the frustration level of learning AI got to me after we were into it two or three months.

you know, learning how to prop things and explain things to get the result that you wanted, I think is one of the biggest keys for that. And not to go off on a tangent here, but this is how the app and working for my brother really came about. I just needed a break. So it came to a point where I’m cussing and swearing.

swearing back at the computer and AI and I’m like, no, no, no, no, we tried to do this like five times. This is really simple. You just change this one thing and you’ve got what I want. But every time I asked it, would change something else. And so I’m like, OK, I still want to continue to learn how to use AI, but I got to just put that aside for a minute and take a day off and not work on that. And so we happened

I’ve had, I was a single parent. My son was 13 months when my ex-wife left. And so I raised them by myself. And I’ve had a housekeeper that’s been with me for like 20 years. And she is getting older. She’s like in her late 60s, early 70s now. She fell and she busted her hip. And so we had to find another housekeeper while she was recovering. You know, I said, if you want to come back, you’re more than welcome to, but you know, we’ll find someone else in the meantime.

And so we had someone come over to the house and give us a quote on what it would cost us to just tidy up the kitchen and the bathrooms and stuff, because I still work about 30 to 35 hours a week. the same thing that happens over and over again when people and relatives visit us with his speech happened with her. And when I’m around, I’m the go-between.

I mean, it’s kind of they understand the 60 % of the first part of his answer. And because he’s around the house all the time and doesn’t leave it, I leave those kind of decisions that I take care of the outside and the lawn and those things that I leave the inside of the house to what he wants. Because he’s the one that spends most of the time, you know, in here. And so I’m answering, you know, I’m filling in the blanks for her. You she’s like, okay.

I understand you want the bathroom clean this way, but what was that last part? And so I finished the sentence. I’m like, well, he said this, you know? And it kind of dawned on me at that time, you know, going back to the third wheel feeling, kind of dawned on me at that time. I’m like, okay, what if I asked AI a couple of questions about how I can help him, you know? I mean, and help him with his speech.

And that’s basically how the app came about. She gave us a quote that was here for half hour, and that happened half a dozen times. And so after she left, I’m like, all right, I still want to try and continue to learn this. And maybe by doing a different project that I’m not just completely frustrated with at the moment, I can help myself with this other project and help him all at the same time. And so.

I just posed the question to you, I use Claude mostly, and I just posed the question to Claude, and it gave me the answer. And from that point on, we, over the last, it’s been a little over two months, two and a half or three months, we refined it, probably ended up in running in about two or three days.

Introducing the Aphasia Communication App

BIll Gasiamis (18:03)

So fundamentally, can you tell me how the app works, what it is and how it works specifically?

Robert (18:11)

It’s basically whatever you want it to be. And it has everything to do with how functional you still are. It’s not designed to be an end all be all. It can be. If you can’t speak at all, it can be. Because you can either type, depending on your conditioning. Do your hands still work? Can you type?

So you can type, there’s a line there as you see, you can type in whatever phrase or sentence that you want, and then it will speak out loud what you type in. And then there’s also for people that are limited in their use of their hands, pre-made phrases. And they range from emergency phrases, I need to go to the bathroom, you need to call the doctor.

you know, personal phrases, hello, goodbye, you know, things that, and I just thought up as many as I could. And we’ll add to that as we move through stuff and anybody that has suggestions, like contact, and that’s probably what’s screwing something up is I didn’t have a contact on there. So my email’s on there now that if you have an idea, please feel free to, you know, contact me and we’ll try and put something in for that.

So that way, you know, if you have an emergency or you have like the housekeeper, you know, like the situation we are and you know, you need something, all you do is just click on the button and then it will speak that phrase out loud. I just wanted it very simple, very straightforward. And so, you know, it’s designed in the sense of

doing it that way. If you want to go to a medical definition of it, you could use it and substitute your own voice completely if you want. But the idea is probably more of a helping situation where anybody going through therapy, like watching my brother go through therapy and coming home with phrases and words that he had to, you could literally

you know, hit the button, that phrase would come up and you could practice that or, you know, the speech therapist could give you a list of things that could, if you could still type, you could type that in and then work with that at home. If you didn’t like me and my brother, add me to, you know, to be here to rub through that kind of stuff. But if you were alone or someone couldn’t get over it, you could use it in that realm. And depending on how your rehab went, you

could be useful for six months. It could be useful for a lifetime. again, that’s why the prices where it’s at, it’s not here for me to get rich off of. want people to, you know, I want it to help people. It’s my brother and I want it to help. So, you know, if you can afford it, it’s $8.99, $9. And that’s a lifetime deal. So once I get this problem.

BIll Gasiamis (21:00)

Yeah.

What’s the price?

Yeah.

Expanding Accessibility in Care Facilities

Robert (21:13)

cleared up that I didn’t know about. You can use it for however long it’s there.

BIll Gasiamis (21:19)

Yeah, nine dollars. I it thirteen

Australian dollars. It’s if it it’s well worth it. Like if you get a you get a tool for nine dollars and you use it forever, like that’s perfectly fine. No issue with that whatsoever. so it it’s

Robert (21:31)

You know, we

are doing something as far as facilities are concerned. I’ve reached out to nursing homes, assisted living places, and I haven’t heard back from any of them yet. I’ve gotten some response on it. It seems favorable, but I haven’t got into any kind of negotiations or anything with them. One of my ideas is like going through with what my mother went through with her dementia, right?

Here in Tomahawk, there’s one, two, three, two nursing homes and an assisted living place. And so my brother and I and my son, they had a couple rooms where instead of being out in the general population area with people all around, we could book a room that had a television and a couch and a table and stuff. And we would bring

order a pizza or bring in food and spend a couple hours as a family where we weren’t disturbed. And my idea for them is twofold. Number one, seeing as how you could use it on an iPad or a tablet. If you had, I have one of the people that helped me here give me information. I work for a group called Tom Ocunary Interfaith Volunteers. it’s a, we give free rides to senior citizens and people.

with disabilities. they can go to the doctor, they can go to the store. And one of the guys was the director at one of these facilities. And he came through to become a director all the way from just being a CNA, which is a very low paying job. It’s the people who clean up the messes, let’s just say, you know, to running the facility for this company. And, you know, he’s like,

I had one person on my wing that no one else in the building could understand but me. And he said, even I had a 50 % chance of understanding what he really wanted. To have this, say an iPad that you could have hooked onto your cart when you’re making rounds or something, he said, would have been invaluable. And so not only in that respect to help them with clients that they have, but then they would also have

like a legal transcription of something in case something a family said that so and so did this to so and so that was bad or they had a problem of some kind. It could be documented. The other aspect of that was with these rooms I was talking about was, you know, you could literally take the computer and open up just like we are here. You’re going to open up a couple of browser windows. You could put Larry’s

you know, speak easy, the interface in one window, you can open up FaceTime on Facebook or Zoom or whatever, you know, communication, let’s say that your daughter lived in Phoenix, Arizona or New York or somewhere. You could get them on the line and you can literally have a conversation back and forth because it would speak out loud through the speaker. And if you were, again, able to type and or hit the phrases, you know,

that person over there would hear it come out of the computer. And so you could then keep closer tabs on your relatives. Because I think one of the bigger things, having this experience with our mother, was the isolation and the loneliness. mean, in those days, which is now 15 years ago, I went there every other day for an hour or two.

I still had to work and still had other things to do. So, you know, to be able to come home and just sit down at a computer and talk to them would have been real nice.

So in a sense of, you know, keeping in touch with your family and that type of thing with friends or whatever. Like my brother was a travel agent in Minneapolis and he’s still got two or three of the people that he worked with that are still in his life. So to be able to, you know,

do that and you can hold a conversation with them and catch up and things. So I think that would be those two things combined I think should be, how do I put it, attractive to a facility, not only for the client but also for the facility itself.

BIll Gasiamis (25:45)

Yeah, yeah. To be able to take an iPad and press a button and have a basic conversation at such a low cost to entry, like that’s really good. I imagine there is already software that’s similar that would

Robert (26:00)

There’s

one that’s, and I can’t remember the name of it, so you’ll excuse me. hope. But there’s one that’s about $13 or $14 right around $12.99 or $13.99. That is similar. But from that point on, the next step up is about $150 all the way up to like $7,000 or $8,000 where you actually have to have equipment at home that…

you need to learn and or have help using. So there’s really a pretty big gap in that. That’s just my opinion. My research isn’t paid. There could be other things out there. I know there’s a lot of text to speech and a lot of the tablets and stuff right now. just to be dedicated to, excuse me, you know.

people with this, you know, aphasia with recovering from stroke. So I really thought, you know, when I, when I’m a

My brother showed him, I’m like, wow, this could really help not just him, but other people.

BIll Gasiamis (27:05)

Yeah, understood. And Robert, if somebody wanted to get a copy of this or to check it out, where would they go?

Final Thoughts and Resources

Robert (27:14)

Speakeasy.com and again, like I said, there’s a free trial. You could just go there and check it out. And if that, you you decide over the course of that free seven days, if that would help you or not help you, you know, and that way then there’s, there’s no push, you know, I think that’s a week. And so if you’re truly interested in it, you have to remember that, that there’s only seven days to try it out and use it.

If it helps, it helps, and if it doesn’t, that’s fine, you move on.

BIll Gasiamis (27:43)

That’s cool. Yeah.

Yeah. Very good. Robert, well, I really appreciate you sharing your story and your challenges that you guys have both had to overcome and the development of this little basic simple tool that solves a problem and and reaching out so that we can let people know so that if they need to solve a problem like that, that is similar and they’re happy to pay nine

ninety nine US dollars, then that that might help them. That might be a good way to go about solving a little problem well, a big problem for people in in their home.

Robert (28:21)

You know, we’ve, it of, asked me something that I did here just recently because we are on the, NAA, the National Aphasia Association website as a resource. We’re on a smaller, it’s called the Stroke Foundation out of Texas, started by a family very similar to your case, a family that has suffered stroke in the family, and it’s a family-run foundation.

We have 300, almost 260 something people that have tried it across without any type of advertising just by talking on Facebook and supporters. And also we’re people from 20 different countries now have tried it. So, you know, I welcome them all, you know, just try and if it helps, good for you. And I’m happy that.

you do something to help anybody.

BIll Gasiamis (29:17)

Yeah. Thank you, mate. Thank you for joining me on the podcast.

Bill Gasiamis (29:19)

Well, there you have it. My conversation with Robert Schmidbauer. A huge thank you to Robert for reaching out and for sharing his and his brother’s story. What stays with me from this one is how simple the whole thing is. Two brothers with a communication gap that the system never closed. And instead of waiting for permission or a diagnosis, Robert sat down and built the tool himself. Nine dollars for life because it’s his brother and he wants to help.

If you or someone you love is dealing with speech difficulties after stroke, head to the show notes right now. You’ll find the link to Larry’s Speakeasy there and the app that Robert built at Larry’s Speakeasy.com. There’s a free seven-day trial so you can see it for yourself whether it helps before you spend a cent. And while you’re there, if the episode gave you something, like it, leave a comment.

Share it with someone who needs it and subscribe so you never miss another episode. Every one of these things helps more stroke survivors and their families find this show. If you’d like to go deeper on Aphasia, check out my earlier conversation with Tracy Bode, Aphasia Help After Stroke At recoveryafterstroke.com/slash Aphasia Help After Stroke. Tracy Bode. The links will be in the show notes.

My book, The Unexpected Way That a 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 at patreon.com/recoveryafterstroke I would deeply appreciate it. Thanks for being here. I’ll see you on the next episode.

The post Robert Schmidtbauer – Building a Voice for My Brother appeared first on Recovery After Stroke.

Walking After Stroke: What Your PT Knows That Your Doctor Doesn’t

A doctor walked in, ran a reflex test, and told the patient they would never walk again.

That same day, a physical therapist from Dr. Kory Langwell’s team arrived. The patient was in tears. And then they walked 70 feet.

“I hope you go back and tell that doctor,” Kory said, “that they missed that.”

Dr. Kory Langwell is a Doctor of Physical Therapy with over 15 years of experience. He runs a mobile home therapy practice across Southern California, and now coaches stroke survivors worldwide through his virtual program at Unlimited Potential Physical Therapy. In episode 410 of the Recovery After Stroke podcast, Kory broke down the realities of walking after stroke what’s actually possible, where the system fails survivors, and what a good physical therapist knows that most doctors don’t.

The Moment the System Stops

For most stroke survivors in the United States, recovery starts with intensity. In the hospital, you might receive three hours of therapy a day. Then you go home.

Within weeks, that drops to thirty minutes, once or twice a week.

“Insurance doesn’t know when your brain stops recovering,” Kory says. “Therapy ending doesn’t mean progress ends.”

The problem is that for many survivors, the message lands the other way around. When the funding stops, the belief follows: that recovery is over, that this is where they plateau, that there’s nothing left to do. That belief, more than the stroke itself, can stall everything that comes next.

The Plateau Is Not a Full Stop

One of the most damaging phrases in stroke recovery is “you’ve plateaued.” It implies that the brain has reached its ceiling, that whatever function you have now is what you’ll have forever.

Kory pushes back hard on this.

“I’ve seen progress years, decades, 10 to 20 years after a stroke. Arms, hands, legs, walking ability. People just get fed up and stop looking for resources.”

What a plateau usually means is that the current approach has stopped working, not that progress itself is impossible. The clinical response isn’t to discharge the patient. It’s to audit what they’re doing and change something. Different exercises, different load, different feedback. Reassess in six weeks. See what moves.

Walking After Stroke: Why More Isn’t Always Better

Walking after stroke is where survivors often get their first taste of both independence and confusion. The instinct, and it’s a good one, is to walk more. Further, longer, more often.

But Kory draws an important distinction between the acute stage and everything that comes after.

In the early weeks post-stroke, more isn’t always better. If someone can walk five steps, pushing them to twenty-five on back-to-back days may overtax the neurological system rather than rebuild it. Fatigue compounds quickly. Quality collapses. And when quality collapses, the brain reinforces the wrong patterns.

“I’d rather have somebody walk 50 feet really well than 150 feet terribly,” Kory says.

Visual feedback changes this completely. When survivors watch themselves walk in a mirror, or on a phone recording, they often see something very different from what they feel. Bill Gasiamis described exactly this: convinced his running gait was dangerous, he watched the footage and found it was far better than he’d thought. The problem wasn’t the movement. It was the feedback.

Once a survivor moves into the chronic stage months or years post-stroke, the calculus shifts. Walking remains one of the best exercises available. Kory also recommends walking backwards in a safe environment like a hallway or near a kitchen sink: it challenges balance, engages the brain differently, and creates new neurological input.

Why Falls Happen – And What Actually Prevents Them

Falls after stroke aren’t random. They follow a pattern.

The clinical term is proprioception: the brain’s sense of where the body’s joints and limbs are in space. After a stroke, this system is often disrupted. Survivors may not feel their foot on the ground, or may not register that a leg isn’t bearing weight the way it needs to.

Add a divided attention task carrying a plate, thinking about turning off the television, reaching for something, and the risk multiplies immediately.

Bill described this directly: he’d made a sandwich, sat down, finished eating, and went to stand up. His attention was on getting the plate to the sink without dropping it. His left leg wasn’t registered as being on the floor. He fell before he’d taken a step.

The countermeasure is simple: stop, feel the floor, confirm the leg is active before moving, then carry the plate. Step by step, not simultaneously.

Foot Drop, AFOs, and Electrical Stimulation

Foot drop, where the muscles that lift the front of the foot are weakened or uncoordinated, is one of the most common walking challenges after stroke. Many survivors are placed in an AFO (ankle foot orthosis) to manage it.

Kory’s view on AFOs is measured: they’re a tool, not a sentence. Whether to wear one, when, and whether to eventually stop using one depends entirely on the individual.

“Take it off every once in a while if you’re in a safe environment,” Kory advises. “That gives new input to the brain a chance for things to improve.”

Electrical stimulation is another tool worth exploring. Kory recommends starting with an affordable unit available on Amazon for around $40 to test whether the technique produces results before investing in higher-end systems. You can find Kory’s recommended unit at linktr.ee/unlimitedpotentialpt.

The “Life Athlete” Mindset

Kory calls his stroke survivor clients “life athletes.” Not because they run marathons or lift heavy, but because athlete thinking produces athlete results.

Athletes track. They audit their approach. They celebrate small gains. They adjust when progress slows. And they don’t let one bad assessment from one clinician define what they believe is possible.

“If somebody told you you’d never walk again, you can take that feedback and use it as motivation,” Kory says. “Or you can let it get you down. That’s up to you.”

What to Do With a Limiting Prognosis

When a doctor says “you’ll never walk again,” it’s rarely cruelty; it’s usually outdated thinking. General practitioners have limited training in neurological rehabilitation. Some are still working from research that concluded recovery stops at six months or a year. That conclusion was drawn from patients who stopped therapy and stopped trying, not from the brain’s actual ceiling.

“I just want to leave the door open,” Kory says.

The research on neuroplasticity is clear: the brain continues to adapt when given the right challenge, the right environment, and enough time. A prognosis isn’t a prophecy. It’s a snapshot of what one clinician observed on one day. Walking after stroke real, functional, independent walking is possible far longer and far later than most doctors suggest.

And sometimes, it happens the same day they said it never would.

If this episode has helped you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened shares the tools and mindset that made the difference across his own recovery.

If the Recovery After Stroke podcast has been valuable to you, you can support it financially 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.

She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell (Interview)

Dr. Kory Langwell on the therapy gap, foot drop, and why the plateau after stroke is a label not a limit.

Highlights:

00:00 Introduction – Walking After Stroke

07:24 Insurance and Therapy Limitations

11:22 Supporting Survivors and Caregivers

16:45 Community and Support in Recovery

26:57 The Impact of Electrical Stimulation in Rehabilitation

29:17 Walking: Quality Over Quantity in Recovery

30:25 Understanding the Stages of Recovery

36:39 Navigating the Challenges of Falling Post-Stroke

42:05 Setting Realistic Goals for Recovery

44:46 The Role of Medical Professionals in Rehabilitation

Transcript:

Introduction – Walking After Stroke

Kory Langwell (00:00)

So we had a client recently there.

Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them,

BIll Gasiamis video 25, image (00:23)

Before we get into today’s conversation, I want to extend a genuine thank you to everyone who supports this show. Whether you’ve joined as a YouTube member, contributed through Patreon, left a review, shared an episode, commented, or picked up a copy of my book, You Are the Reason This Podcast Keeps Going. Today’s guest is Dr. Corey Langwell.

A doctor of physical therapy with over 15 years of clinical experience. Corey runs a mobile therapy practice across Southern California and now coaches stroke survivors worldwide through unlimited potential physical therapy, a virtual program built for people who can’t access the in-person care they need. In this conversation, we get into the gap that opens up the moment you leave hospital.

While the word plateau might be the most dangerous word in stroke recovery,

What physical therapists know about walking after stroke that most doctors do not, and what it actually takes to keep making progress, years or even decades post-stroke. If you’ve ever been told there’s a ceiling on your recovery, this episode is going to challenge that. Here’s my conversation with Dr. Corey.

BIll Gasiamis (01:39)

Kory Langwell, welcome to the podcast.

Kory Langwell (01:42)

Thanks for having me.

BIll Gasiamis (01:43)

Tell me a little bit about your background.

Kory Langwell (01:47)

Yeah, I’ve been a doctor of physical therapy for over 15 years and I’ve had my own mobile therapy practice for a little over five years. So helping people in their homes throughout Southern California with my staff of PTs, OTs, and speech therapists. And now we’re expanding to worldwide really with our virtual coaching program for people that have had strokes. So

BIll Gasiamis (02:12)

Worldwide. That’s awesome, right? So that’s where I found you on the TikTok app. And it’s a pretty decent channel to follow. Tell me just while we’re here and I remembered to ask, what is the TikTok handle?

Kory Langwell (02:14)

Yeah.

Yeah. Yeah, yeah.

It’s Dr. Kory Stroke Recovery PT and I can I can send you the link later on. But yeah, so I started two months ago and it’s been growing ever since. So

BIll Gasiamis (02:38)

Yeah, it’s really good because I think your information comes from the clinical background, something that I can’t do. I can put a lot of information out about my personal experience with stroke, what other people tell me about their experience, but your specific instructions around how to improve or how to do something differently or how to achieve an outcome with regards to whatever physical deficit people have after stroke.

Is really helpful. So for people who are watching and listening, go to TikTok and probably the other social media channels, yeah, Kory?

Kory Langwell (03:12)

Yeah, yeah, I started a YouTube recently, unlimited potential physical therapy. And yeah, I’m also on Facebook, Unlimited Potential Rehab. So yeah.

BIll Gasiamis (03:22)

Yeah. You’re one of those people.

I often get asked where can I find somebody that’s going to help me with my stroke recovery? I can’t get there or whatever. And I’m I’m often the middleman. People think that I know everything about everyone, especially from Australia to the United States, right? But what’s weird is I do know a lot of people and I can connect people. So it’s great that we connected and I found you. And I think it’s really important that.

Kory Langwell (03:39)

Yeah. Yeah.

BIll Gasiamis (03:50)

It’s your perspective and the way you think about recovery that’s different. And that’s why I reckon people A, should follow you and B, listen to this podcast episode. So don’t leave yet. F listen to the episode and then go and follow Kory on TikTok and all the socials. We’ll have all the links in the show notes. My first question is about the gap. Okay. So we’re often

Kory Langwell (04:01)

I appreciate that.

BIll Gasiamis (04:17)

Find ourselves as stroke survivors get sent home from hospital. Everyone does amazing things before we leave hospital. The care is amazing. They try and rehabilitate us as much as they can. They keep us alive. They send us home. But then the gap at home is we’re kind of left alone. Nobody to check in with us to make sure that things are kind of on track, that we’ve settled in. And it feels for a lot of people like recovery ends after therapy ends. But

Can you give us a bit of a your your thoughts on that?

Kory Langwell (04:54)

Yeah, usually at least here in the States, people go from getting three hours of therapy a day in the hospital to literally dropping down to thirty minutes once or twice a week.

So there is this huge gap where they just feel like they’re not getting enough and then that it really slows down their progress, or so they feel. and that’s where we’ve come in with our in-home care. But what I’ve seen is people just they need that accountability, whether it’s virtually or in person. And so that’s one thing that we really strive to do is just provide that that one-on-one support virtually. And also, you know, what I see with a lot of people is they think that, stroke recovery.

Stops at you know, three months, six months, a year. We’ll probably talk about this more later on. But you just got to keep challenging yourself, doing new things. And I find a lot of times people get stuck on just finding random things on the internet, and then they just they don’t reach out or have the support that they need to move forward and make progress. So grant you just don’t want insurance to tell you when therapy ends or when progress ends. So that doesn’t mean your brain just immediately is yeah.

Yeah, therapy’s done because insurance says it is and the brain just shuts off. I mean, I’ve seen progress years, decades, you know, 10 to 20 years after a stroke. I’ve seen progress with arms, hands, legs, general walking ability, you know, stuff like that. So it’s a lot of times they just people get fed up, they get frustrated, and then they stop doing or looking for resources. So

BIll Gasiamis (06:26)

Y the thing that you said is very interesting about insurance telling you when therapy ends. Now what they’re doing, what are they doing? Are they like I know what they’re doing fundamentally, right? They can’t forever pay somebody to have rehabilitation. And maybe they’re encouraged to pay them for as little as possible as well, because it costs money, right? So they they

Kory Langwell (06:49)

Yeah. Yeah.

BIll Gasiamis (06:53)

come up with some kind of a conclusion or whatever, and then they say to people, Well, y that’s about it. You’re not going to really improve any more than that. And we need you to we we’re going to stop funding it. So how does that conversation go from what you understand? And can anyone intervene in that moment and continue the therapy? Is there a way to kind of argue your case to get more therapy?

Insurance and Therapy Limitations

Kory Langwell (07:24)

Yeah, it’s a tough one. So having worked in hospitals in acute rehab units, having worked in outpatient clinics, and then now as my own mobile practice in people’s homes, I’ve seen the whole spectrum of therapy and the issues that come along along each step of the way. in the hospital, you know, it used to be therapy they would get six to eight weeks in the hospital a lot of times here in the States. And now it it used it dropped down to like three weeks for a lot of acute rehabs, and now they’re pushing it down to like 10 to 14 days.

which is not a lot of time. And, you know, we used to be able to get people to near independence with a lot of their their skills, you know, the activities or ADLs, activities of daily living. But what I see now is a lot of times hospitals when I left the hospital world in November of 2021, at that point, it was like, let’s just get people to like minimum assistance, meaning they need about 25% or less, and let’s we gotta ship them out of here because it’s like it’s like a churn. It cause hospitals, to be honest.

They’re big business. They they are, you know, it’s unfortunate. and they have some of the most highly trained therapists, but the therapists are kind of hamstrung from upper management, middle management, you know, being told probably from people above them that they can only do so much. in the states we have private equity buying out a lot of hospitals and stuff like that. So there are things are changing in the length of stay that clients get.

Once somebody goes to home health, they usually only get like two to three weeks, once or twice a week, because the goal of home health is usually get them to outpatient, get them to a clinic. and when they go to a clinic, most of the time somebody will reach like a maintenance level where like they’re not really making a ton of progress and the therapists know they’re not gonna be getting reimbursed as well for that. So that gets really challenging and they have to write really good goals to help.

you know, progress things or continue with therapy. So if your therapist is telling you in the outpatient clinic, that’s the one area where you can oftentimes have the best chance of extending therapy. They might be able to, you know, wiggle their way around writing new goals, higher level goals that you can work towards and progressing. And then other times they want to stop therapy for one to two months, three months and then reassess, you know, down the road, which is where a lot of times people seek us out for private therapies on the side. So

It’s unfortunate, but yeah, the insurance game does have a their hand in it a lot of times, telling people when they can discharge or not. So yeah.

BIll Gasiamis (09:50)

How hard is it for a therapist

to know that the stroke survivor patient is not ready to go home, but you have to wind it up for them.

Kory Langwell (09:59)

Yeah.

Whew, it’s really challenging. And usually, I mean, in out most outpatient clinics, you might get somebody two or three days a week if you’re lucky. Usually 30 minute sessions in in the clinic. Sometimes you have one-on-one places for an hour, which are great, or 45 minutes, but you’re it’s a volume game in the clinics because the reimbursements have shrunk in the outpatient world too. So they’re like, We need more volume here.

And it’s unfortunate. It’s not on the therapist. It’s more on the, you know, just the the whole game that they have to do in order to survive, or else they would have to close up shop. But as far as like extending somebody, it it it can be a challenge. It’s it’s really you see it coming as a therapist, you know, and you’re in the outpatient insurance-based game. you’re like, ooh, you know, I I in about two to four weeks I can tell this is gonna be an issue with your insurance or whatnot. And most therapists, if you can get somebody to like 90% better.

You know, that’s pretty darn good, especially after a stroke. there’s a lot of factors that go into that, a lot of variables. But yeah, so it’s it’s tough and getting somebody back to a hundred percent is can be challenging with the insurance game.

BIll Gasiamis (11:07)

Yeah, getting back to a hundred percent is

Kory Langwell (11:12)

It’s hard. It’s like the new one hundred percent or yeah, it’s another topic for yeah.

BIll Gasiamis (11:13)

my gosh. Yeah. The new hundred percent I pref yeah,

that I love that. That’s a great statement actually, because a hundred percent, I mean

Supporting Survivors and Caregivers

BIll Gasiamis video 25, image (11:22)

If this podcast has helped you in any way, here’s how you can help it reach more people. Share this episode with a survivor, a carer, or anyone who needs to hear that recovery doesn’t have an expiry date. Leave a review. It makes a massive difference. And if you’d like to support the show financially, you can do that through Patreon at patreon.com/recoveryafterstroke or by becoming a YouTube member. Now it’s back to the show.

BIll Gasiamis (11:50)

I I have that challenge with a lot of stroke survivors who are early on in their recovery. They reach out and they say, you know, how long is this going to take for me to get better? And like, dude, like it might never get better. in that what they want is they want to go back to where they were before the stroke. And there’s n nobody’s going back there. Nobody at all.

Kory Langwell (11:59)

We don’t know. Yeah.

Yeah.

BIll Gasiamis (12:11)

Not a single person. And if there’s damage in the brain and the damage is permanent, which damage is in some instances, then you cannot reverse that damage. You have to accept that damage and then adjust and recover and overcome the challenges that you’ve been left with. And it’s such a difficult thing. But the new 100%, I love that, Kory, because I kind of am there.

And if people ask me how do you feel, which nobody nobody understands to ask how do I feel after my stroke, my left side is completely numb. You know, I get spasticity. It doesn’t look visibly like other people experience spasticity. So I got away with that part of it. I don’t look like I’ve had a stroke, but I have the fatigue, I have the balance issues when I get tired, I have all these challenges that are always there and they’ve been there since two thousand and fourteen. Like it’s not going away.

Kory Langwell (13:07)

Yeah. There’s

There are those silent problems too that like you said, like you’re doing so well in general that a lot of people just can’t see the fatigue or the how tight your arm feels or different things, which is oftentimes really challenging. But if you put it even, you know, towards like an orthopedic injury where somebody has like a shoulder surgery or a knee surgery, typically they also have like that new one hundred percent where it’s you know, it’s never gonna it’s hard to have it feel a hundred percent like it was before. There are certain instances where somebody might make this miraculous recovery. It does happen.

Maybe they’ve had a TIA, a mini stroke, or you know, just made this miraculous recovery. Those those people do exist and it does happen. But what I find in the stroke community that happens a lot is there’s this everyone wants to compare themselves to other people, or they’re they’re wanting to get the answers from things, but there is no crystal ball on these recoveries, you know, for for neuro issues. It’s more like let’s see how it progresses in one month, three months, six months, a year, and then just continue to track because it is a lifelong issue that you have.

have to manage and and continue to, you know, have things come up over over time. So yeah.

BIll Gasiamis (14:14)

Yeah,

I agree with that. So this next question I thought about how I’m gonna ask it a lot. So I’m gonna ask it just the way my gut’s telling me to ask it, which is how much bullshit is that you’ve reached the plateau?

Kory Langwell (14:31)

yeah, that’s a that’s a fun one. I I love the I love the the BS part of that. yeah, it’s tough. I mean, you can see a lot of times what you’ll see is like there’s almost, you know, you think of plateau as like a flat line. And a lot of times what we do see is you’re there’s still room for progress. Like maybe somebody’s feeling like they’re 60% back to their normal self. Well, if we can get you to 65%, would you take that? Like most people would say.

You know, it’s either sixty or sixty five percent. Like, yeah, let’s do that. But a lot of times what I see is

Progress has just slowed down, they get upset, you know, the doctor’s like, whoop, this is as good as it’s gonna get. This is where you’re at. You’ve plateaued and you’ve entered a maintenance stage. And what I often see with that is it’s that’s the time to shift something up, mix something up, do something different. so what we like to do is take into account what kind of audit what somebody’s doing when their exercises, their daily routine and all that, and then shift things in some certain way and reassess in six weeks to see if we can progress that or make any other changes.

So just like with any other training, like if somebody was a bodybuilder going for a competition or a professional athlete, we take that kind of same approach to our stroke recovery. We call athletes in general. Like they’re life athletes, you know. So we wanna help people feel as independent and as strong as they can. So yeah.

BIll Gasiamis (15:50)

That’s a great mindset shift, right? So if you consider yourself somebody who’s injured, somebody who’s never gonna be the same, all that kind of stuff, well, it might be accurate, but it may not be helpful in the way you approach your recovery. But an athlete, that’s very cool. Now I know some people say what an athlete runs on a track and field you know, facility. An athlete does this, an athlete does that. Well,

Maybe, maybe they don’t, you know, maybe you can be your own version of an athlete that allows you to think about that constant and never ending pursuit of getting better and improving. And whether you’re getting better and improving your physical side or your mental attitude or your emotional side or your or your nutrition, you know.

Community and Support in Recovery

Athletes have all these things that they always constantly forever focus on and their gains come from, you know, that really last part, which is almost unattainable, but it’s about going for it. It’s about going for the last one percent. And then reflecting back, like you said, maybe twelve months later and going, Look how far I’ve come, rather than look what I can’t do or look what I haven’t achieved yet. It’s like, look what I have been able to achieve. That’s

Kory Langwell (17:03)

Yeah.

Yeah.

Yeah.

And that’s where and that’s where tracking comes into it. Are there, you know, your what what are your

BIll Gasiamis (17:15)

Such a different mindset.

Kory Langwell (17:21)

you know, your KPIs, your key performance indicators that you’re looking into as far as, hey, I was only lifting one pound with my arm and now I’m do lifting three pounds. Like that’s huge improvement in a, you know, what however long it’s been. So those whatever you’re tracking, it helps to you know, it could be your diet. Am I making good choices eighty percent of the time? Am I so making sure in like all of your life assets assets and that or facets of life, that’s what we try to do as well. And like you said, mindset, movement, muscle, all that.

all those things together. we we you know, tie all those things into our our program. And I think everyone needs to do that as far as, you know, their strengthen those the mental muscle, the physical muscle, you know, they’re just as important. And having that support, whether it’s with a coach or whether it’s with family, friends, outsiders, you know, other stroke survivors, it’s really important. So

BIll Gasiamis (18:14)

Yeah, community is the I think biggest thing for me. because then with the right community, the one that I’ve created for myself, at least I get to talk about the things that bug me about what happened to me with people who one hundred percent understand it. And then that way, even if we’re different in our attitude in the way we go about things, at least we understand.

Kory Langwell (18:35)

Yeah.

BIll Gasiamis (18:45)

And you’re totally being heard. Do know what mean? Like it takes one minute to listen to the story of a stroke survivor and to fully understand where they’re coming from because they’ve been through a a similar, a very similar experience to to myself.

Kory Langwell (18:52)

Yeah.

Yeah, yeah, absolutely. for sure.

It’s so true. I mean, as a therapist, I I never really I mean, I knew there was a mental toll to it, but having worked with people for, you know, they come on and they’re with us for several years, you really see the mental aspects, like the ups and downs that occur with that. And it’s so huge to you know, important to to focus on that as well. So and not lose sight of it. So those silent symptoms of the stroke, you know, like we were talking about as far as the the emotional aspect or other things of that. So yeah.

BIll Gasiamis (19:26)

Yeah.

Yeah, one of the biggest complaints that I get from stroke survivors, not about their spouse, but about people about people who haven’t had a stroke, right? So often it’s the spouse that gets the raw end of the stick. But it’s that they just don’t understand me. And it’s so true, right? There’s no way that that person can understand you unless they’ve had a stroke, and we do not want that for them. That’s better that they don’t understand you and that you have to learn how to explain yourself in a way

Kory Langwell (19:53)

Yeah.

Yeah.

BIll Gasiamis (20:04)

that gets the message across even if they don’t get it. Like it’s okay because they’re never gonna get it. We don’t want them to really ever get it. What we wanna do is accept that they can’t understand something that they have never experienced, which we don’t want them to experience.

Kory Langwell (20:20)

Yeah, that’s so true. I mean, the it a lot of times it comes from a good place. They’re like, just get up and move. Why are you so tired? or you know, things of that nature. And it y you’re right. They just they don’t understand it. It’s it’s tough. There really should be more caregiver support and education.

I’ve tr I’ve strived to do that on my page or on my different resources that I’ve included on my bio. But yeah, it’s it’s in sh it’s a challenge for people to to see the whole picture and the recoveries process that’s going on with that. So yeah.

BIll Gasiamis (20:51)

Yeah.

How common is foot drop?

Kory Langwell (20:56)

yeah. Strokes you you do see it a fair amount. it’s what I see a lot of times with that.

You know, when in the hospital, a lot of times I don’t like to immediately put somebody in like an AFO. Everyone knows ankle foot orthosis and stuff like that. but it’s something that I like to see how the body reacts initially to to the the weaker ankle or whatnot, and how is somebody compensating? So you’ll see somebody, you know, try to march their leg up to clear their foot through the gate cycle, or they’ll kick their their leg out to the side so that they don’t drag their foot or their toe. so I like to see.

See

what’s going on for the first week or so before we start trying to, you know, put a bunch of equipment on somebody. But honestly, it it’s it’s pretty common. it just depends on the nature or severity of the stroke. Most muscle recovery starts proximally, meaning like at the hip and then works its way down, or in the shoulder and then works its way down to the hand. so the ankle and the hand are usually the last to recover.

but yeah, so it’s obviously it’s very noticeable on somebody’s walk gate or whatnot if they have it, or you know, as you just see their AFO and you’re like, that guy’s got foot drop, most likely, or whatnot. So yeah, just trying to figure out where’s is there are there other weak links up the chain and the knee, the quad, you know, your your your glutes, your hip, what other areas could use some help to help you get that leg through and help you be more independent? So

BIll Gasiamis (22:28)

Mm.

Kory Langwell (22:29)

really treating the whole ankle or the whole walking pattern, not just the ankle or the foot. Cause we a lot of times we get laser focused into one area after a stroke like my hand or my foot, but we gotta look at the whole body. So yeah.

BIll Gasiamis (22:41)

So there is a conversation that happens again in the community about whether I should be wearing AFO or I shouldn’t. And you often hear people saying, I got rid of my AFO. it was causing me to walk badly or incorrectly and it was decreasing the muscle activity in the correct way.

Kory Langwell (22:51)

Yeah.

Yeah.

BIll Gasiamis (23:08)

And then you hear the exact opposite. Well, you know, you should definitely have an AFO so you don’t trip over, you don’t do this, you don’t do that. Like, how do you determine that whole should I or should I not have an AFO? And do some people definitely need an AFO? And then also are there some people who can transition out of an AFO?

Kory Langwell (23:20)

Yeah.

Yeah, it it really is with a lot of neurotype issues, it it really does depend. You’ll hear the answer, it depends a lot of times in the neuro world, neurological issue or you know, in the stroke world. But on a case by case basis, it’s really how does somebody look? How independent are they with and without it? How much strength do they have in their the muscles on your shin and on the outside of your leg that help lift your ankle up? is it something that maybe you just wear it when you’re outside? And then when you’re inside the house, you’re getting that input.

with your shoes off. I I really liked the shoes off, you know, kind of full input on how your foot’s moving. You can really see it visually, get some feedback there on what’s going on. So it it and it can change over time. Maybe somebody ditches it after a while or maybe they w they know like, hey, I’m gonna be going on this longer walk. I’m gonna use my AFO so I don’t get as tired because it can be more taxing and energy draining to have to, you know, lift your leg up more, kick it out to the side or whatnot. So we’re really trying to figure out what’s the best

quality over quantity for for most folks so that they’re not overdoing it, but they still are getting you know, the appropriate amount of feedback and and to help them live their life, be as independent as possible. So I’m not against or for it. It’s just wanna it depends on the person. So yeah.

BIll Gasiamis (24:45)

Sounds like it’s a tool to be probably continuously assessed and determine its usability and then also for some people determine whether or not it’s short term, long term thing. And then also keep looking at it. What I seem to also see is people get told something, they do it, and then they do it for a long, long time and nobody kind of ever intervenes a year later to say, where are we at with that?

Kory Langwell (24:51)

Yeah.

Yeah.

It you know, it it’s it’s good to take it off every once in a while if you’re especially if you’re in safe environment and just reassess things, you know, on your own or with a therapist or whatnot. That again gives new input and sensory, you know, feedback to your brain of like, what’s going on here? And that that’s a chance for that neuroplasticity to occur, which you know, is a is a is a big buzzword in the in the neuro world. But yeah, so we’re just trying to create those environments and those chances for, you know, things to improve and and reassess.

assess things as as you’re going along. So yeah.

BIll Gasiamis (25:49)

Can you explain to me briefly if you can, like what happens with foot drop, why does it occur? and why don’t I hear about the opposite of foot drop, which is the foot changing and going in the other direction?

The Impact of Electrical Stimulation in Rehabilitation

Kory Langwell (26:06)

Yeah. so your your muscles on your shin, you know, like those those are the ones that people get shin splints on from working out or whatnot, your anterior tibialis muscle, those are a prime mover of lifting your foot up.

And oftentimes the feedback and the timing, the coordination down to those muscles is just weakened or impaired. So you’ll see a lot of issues with that. You also have muscles on the outside of your shin. They’re called everters. So they evert or turn the foot out. So the combination of those everters and then the dorsiflexors that lift the foot up, those muscles are the two prime movers of that motion. They’re oftentimes affected with different strokes. And then so a lot of times what we end up using is like things.

like electrical stimulation. I have a really good video on my YouTube, about eight to ten minutes long on how to set that up. but you can

You c I I see a lot of good impact with the with the E stem, whether somebody’s laying down or sitting, or then there’s other things like the bioness for the leg and the arm, but the one for the leg to help with the timing and coordination, all that, all those things that go into it. So it’s just not just weakness, it’s that timing, coordination, balance, all those things combined. So yeah.

BIll Gasiamis (27:19)

Got it, got it. So you’ve seen some positive, helpful, supportive kind of outcomes from those electrical stimulators at like Bioness and other other types.

Kory Langwell (27:33)

Yeah, yeah. I’ve even like I’ve I have one that I use with clients that I I bought on Amazon for like forty bucks because the the range is anywhere from thirty to forty bucks up to like hundreds of dollars. Or, you know, the Bioness is you I think they can get that covered with insurance, at least a partial bit of it, but those are a lot more expensive. like thousands of dollars from to my knowledge. But I what I’ve seen is

I don’t see a huge difference between some of those cheaper versions and then the larger ones. some of the bigger ones, like the Bioness, you do get a little more feedback or like that since like it will come on at a certain point of your gait cycle. So it’s like, lifts the toes at a certain point.

helps you go through whereas versus you know a standard ESTEM unit, you’re usually it’s on for like 10 seconds, it’s off for 10 to 30 seconds depending on the settings. So but as an exercise tool in the general, in general, if somebody’s having issues and they have good sensation to that area. So you don’t want to put it on somebody that like can’t feel their leg or whatever. But it can be very beneficial at like getting that sensory and then the motor or muscle input back to that area. So not saying it’s going to get to that 100%.

But it’s gonna help you. it oftentimes does help people, even, you know, if it’s ten to fifty percent better, great. You know, that’s a huge difference with somebody getting around. So yeah.

BIll Gasiamis (28:53)

Okay. So worth people considering the possibility of getting a forty dollar version just to sort of try it out and see whether or not it might be supportive. And then if it is and they want to get something more expensive, then go f go from there. your homework after this conversation is going to be to send us the links to every single thing you mentioned. So we can put it in the show notes and everyone can have a look at it. Now, with walking,

Kory Langwell (29:12)

Yeah.

Yeah, absolutely.

Walking: Quality Over Quantity in Recovery

BIll Gasiamis (29:23)

I’m of the I’m I I’m I’m in the camp of do more in the from the perspective of if you’re only walking for a minute, try and get to two. If you’re walking for two, try and get to four and so on. And then if you can get to thirty minutes or an hour at some stage, doesn’t matter when, then that’s even better. but when we started that conversation about

Kory Langwell (29:39)

Yeah.

BIll Gasiamis (29:53)

you joining me on the podcast and we share ideas about what we’re gonna talk about. You came back with me with regards to something about walking that people miss that could mean that walking further, longer, and more could actually be causing a problem. Tell me about about walking and the things that we can run into that make well, not things worse necessarily, but

Not from an exercise perspective, but from a rehabilitation’s pers perspective.

Understanding the Stages of Recovery

Kory Langwell (30:20)

Yeah.

Yeah, I think it there’s a little differentiator in there. It’s like where what stage are you at in the recovery? So if somebody’s in that really acute stage, it’s you know, pretty fresh on the stroke, maybe it’s like somebody less than a month post stroke. We don’t want to get to the point where they’re just like

you know, nearly exhausting themselves every single walk, you know, so there’s a time and a place for that. So you know, if somebody can only walk like five steps, we don’t want to go try to, you know, you’re gonna walk 25. And like you can do that every now and then, but don’t do it on like back to back days. Don’t do it on like back to back therapy sessions or whatever. So there’s a there’s a combination of like early on we want to make sure things are good quality. And then as we get moving forward, we want to progress in a fashion that’s comfortable and not over

Taxing the neurological system, because a lot of times, as you know, fatigue plays a huge role in that. And how is that affecting you? Are you like you went for a super long walk, but now you’re down for the count for two days or you know, at least a day. So you know, walking a hundred feet can feel like a marathon early on. So it’s just making sure that you’re getting the right feedback, that accountability, support, where you’re it’s quality.

in not just overdoing it. So I find that a lot where people want to do a ton of reps or like they’re doing an exercise, like they’re trying to lift their arm up, but they’re doing this the whole time, you know, and I’m like, you’re just you’re not lifting your arm, they’re just like tiring out their trap muscle as opposed to like some of the the delt or bicep or different areas. So like you’re just gonna get really bulky but traps up here, but you’re not really necessarily helping yourself versus if you did good quality and like keep that shoulder down. I’m just using that as an example. But for walking, you know, same thing. Like are you using a mirror for feedback?

To see, like, I’m actually, I’m every step, I’m kind of falling off to the side. Why is that? I’d rather like have somebody walk 50 feet really well than like 150 feet terribly, you know. So it’s and that that again goes into more of the acute stage. Now, if somebody’s sub-acute, more of a chronic, it’s been 10, 15 years, go for it. Like, if you want, if you feel good about it, you’re not overtact taxing yourself, getting overtired or anything, you know, do what you can. Walking is one of the best exercises for you.

I also like I I’m a big fan of walking backwards. So in a safe area like by the kitchen sink or a hallway or something, it just challenges your mind and it’s a really good balance exercise for somebody post stroke or with any neurological issue because it just told you you see somebody try it the first time, they’re like, What do you want me to do? Walk backwards. And then there’s tons of ways you can adjust the the intensity on that as well. So yeah.

BIll Gasiamis (33:01)

So also I remember being in outpatient rehab and feeling like I actually wasn’t able to walk well. And then the therapist saying, Well, why don’t we just record it and have a look at how you’re walking? And it was also about running because I I wanted to run, but I didn’t want to run marathons. I just wanted to be able to run across the road if a car’s coming or something. And I said, Well, I’m a bit concerned about how that

Kory Langwell (33:15)

Yeah.

BIll Gasiamis (33:30)

goes ’cause I don’t want to injure myself running, et cetera. And well he said, Well, why don’t we do a run, I’ll record you and I’ll then we’ll break it down and I’ll show you what you’re doing or what you’re not doing. And it turns out that my running style was fine. What wasn’t fine was the feedback that I was getting because it was completely different to the previous thirty seven years of my life. And I and because it felt different and my brain registered it differently, it

It was scary. Like it was like, well, this doesn’t I’m gonna probably injure myself is how I I thought it. But when I saw the video, it was completely different. And sure, there was some instructions still about how to do it correctly, what I might be able to improve, especially with my left leg, but the but the overall picture was more positive than I t made it out to be. And that’s the challenging part. Sometimes we think we’re less capable than we are.

Kory Langwell (34:06)

Yeah, yeah.

Yeah, and that’s why the visual feedback is so important, whether you record it with your cell phone or you know, just getting the real time feedback on with a mirror or something like that. It’s you know, you see that used in therapy a lot because you may not notice that you’re doing something and just having somebody tell you that isn’t gonna help as much as if you’re somebody’s telling you plus they’re showing you what you’re doing. Yeah, that that can be a huge, you know, help of like, you know, that

I can feel that now. It’s good biofeedback. I can, you know, move on from there. So yeah.

BIll Gasiamis (35:01)

Yeah. And so it sounds like there’s two parts to that conversation. Is sometimes we think we’re doing it better than we are, and sometimes we think we’re doing it worse than we are. So it’s really important to have somebody assess you or at least give you feedback and give you the opportunity to check your assumptions about yourself and then also to check via perhaps a recording to check, you know, how you are actually doing things. So you can see it from

Kory Langwell (35:10)

Yeah.

BIll Gasiamis (35:31)

their perspective and then you can adjust as you’re going forward.

Kory Langwell (35:35)

Yeah, absolutely.

BIll Gasiamis (35:37)

So what about falling? That’s a huge issue after stroke. I fell quite a few times after surgery. The first time I fell, Kory, was about I don’t know, less than twenty-four hours after I woke up after brain surgery. And the nurse said to me, Have you been to the bathroom to movie bowels? And I was like, No, I haven’t been anywhere. And she said, Well, great, get up, I’ll let I’ll help you.

get there and now she was a lot smaller than me and a lot thinner framed and she said just put your arm around me and I’ll help you get to the bathroom. Okay, cool. I did that and when I stepped out onto my left leg, from the left side of the bed, as soon as I put weight on it, without her having any idea, I completely fell straight to the ground, in the ward, screaming

Kory Langwell (36:32)

no. Yeah. Yeah.

BIll Gasiamis (36:36)

I’ve got a fresh h scar and patch on my head from brain surgery literally twenty-four hours ago. so it became quite a concern after that because it was the first time I realized that my left side doesn’t work. And it was the first time I realized that th falling after a stroke with a cr a fresh craniotomy and all that kind of stuff is also very dangerous, right? So when I came home

Navigating the Challenges of Falling Post-Stroke

Kory Langwell (36:37)

Yeah.

BIll Gasiamis (37:04)

I was pretty independent and I felt really good about the fact that I was able to walk on my own. but when I got up from the couch one time and many other times when I’ve fallen, when I got up from the couch on time, I forgot to connect my new leg to my my standing up, my getting up from the couch. I had just eaten a sandwich. It was in a plate. I was the one that went and made the sandwich, sat down and started eating it.

And then as soon as I finished it, I went to get up to take the plate to the sink. And my left leg wasn’t aware that it was on the ground. And I fell immediately. And I dropped the plate, I broke the plate, I smashed my ribs on the arm of the couch. I thankfully didn’t injure myself terribly, but it was a close call. And I always after that, I always made a point and still do in the morning when I wake up to get out of bed.

Kory Langwell (37:41)

Yeah.

Wow. Yeah.

BIll Gasiamis (38:01)

make sure my foot is on the ground before I stand up so that I don’t lose balance and fall. So that’s my that’s my story about falling, but also it’s very common in stroke survivors. I hear that a lot. Tell me about why falls happen after stroke.

Kory Langwell (38:05)

Yeah.

Yeah.

Yeah. You know, first off it

Kinda hurts my therapist heart to hear that what you know, the nurse and you will fall in there. That’s where I’m like, he needed a PT evaluation to see how strong his legs are, where his, you know, sensation is and all that. Usually when we get somebody up, we want to make sure they’re safe at the edge of the bed. And then maybe we’re transferring just to like a a bedside commode in the the first time. And then you’re you you check that box then. We start moving towards walking once we make sure it’s safe. But sometimes the nurses get a little gung ho with things and get a little excited. we try to stay in our lane and, you know, just do the

That PTS needed. but as far as like, you know, making sure somebody’s safe, it’s creating the right environment for them that, you know, like I mentioned, making sure they’re strong enough with their legs to, you know, and the most people will know as they started physical therapy what level they’re at, how much help they need, all those things. So, and then not over challenging somebody where we’re doing like

very advanced balance exercises or doing very, you know, doing three tasks at once or like you carrying that dish, you know, and that’s a more your brain is like thinking, we’re good and I’m just gonna carry this dish and I’m gonna go turn off the TV while I’m getting up or whatever. And your brain’s like, nope, no you’re not, and you just fall over. So it’s like creating, you know, those too many environmental stimuli probably and then just where it kind of I don’t tricked your brain into to not focusing on where your your leg is at.

We call that the proprioception or just realizing where your joints are, your limbs are in space. And sometimes that can be very affected after strokes. So we just wanna, you know, see how that looks, see how you’re moving, and and you know, go from there. So yeah.

BIll Gasiamis (40:08)

You probably describe that better than anybody, actually. Proprioception is my is a challenge that I have, but nobody ever connected that to what you just said, too many things happening at once. And it was exactly that. I had a plate, I just finished a meal, and my goal was to get the plate back to the sink safely without dropping it. And it was my my attention was

Kory Langwell (40:33)

Yeah.

BIll Gasiamis (40:36)

diverted away from making sure my leg was in the right position for me to stand up and was the muscles were activated, which I had been doing every day before that, right? I’d been making sure. But right now I had a plate in my hand and it was get up without dropping the plate.

Kory Langwell (40:37)

Yeah,

Yeah.

Yeah, yeah. Yep.

Yeah.

Pun pun intended, step by step, right? Just looking into like, okay, my feet are on the ground. I am able to push myself up to stand. Now we’re gonna take a step slowly, you know, go through that. So yeah, it’s it’s making sure everything looks appropriate and is, you know, safe for that specific client. So yeah.

BIll Gasiamis (41:12)

In

my case I think now reflecting back on it, it would have been better if I’d gotten up and then reached over to pick up the plate and then moved to towards the the kitchen sink. And I think I was at home alone that day. And again, I screamed because before I knew it all was on the ground.

Kory Langwell (41:27)

Yeah. It happens. Yeah. Yeah.

Setting Realistic Goals for Recovery

BIll Gasiamis (41:35)

It’s a very interesting thing to reflect back on it. under these sort of conditions where you and I are talking about things that seem they’re very glossed over. They’re not often spoken about in detail and people miss the the point. And sometimes people think I can’t do something properly, therefore I’m not gonna do it at all. But with regards to walking, what’s the best thing to do?

about a walk that you haven’t been able to get back to the normal sort of style and and feel uncomfortable about doing. Some people will go, well, I’m opting out, I’m not gonna do that anymore because I can’t do it properly. It’s too difficult or it’s uncomfortable.

Kory Langwell (42:21)

Yeah.

Yeah. I think it’s making goals that are you know, you hear about those specific, measurable, attainable, realistic time frame, the smart goals. So making sure that applies here. So

It you gotta be able to walk before you can run, like with anything in life. So and that’s just you know, symbolic quote or whatnot, but you just wanna be able to do stuff that you can be working towards, but it’s also not so far out there that it’s like really hard. And then I see a lot of times people move those goalposts on themselves too much where they’re like, I got here. Now it’s like I wanna, you know, it’s you got to celebrate those small wins and then go from there as like far as you know, moving forward.

So we had a client recently there.

Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them, you know, that that you missed that. So it’s

BIll Gasiamis (43:15)

Mm.

Kory Langwell (43:36)

really just making sure that you’re creating these sustainable goals that

You know, and not letting people like that doctor that may not know you, a family member, you know, get in your ear and and cause these things that are detrimental to your your progress and take it in the right way. So yeah.

BIll Gasiamis (43:55)

You can’t actually answer this and I’m putting you on the spot, but I’m gonna ask it anyway. Like I assume that doctors, therapists, everybody is about rehabilitating, supporting, helping people and all that kind of stuff. I I not assume they definitely are, right? But what do you think is behind a questi a statement like you’re never going to X again? Like I hear that so, so much and I thought that by the time we get

to twenty twenty six that that won’t be a thing that I hear about so often. Like, but I I don’t think it comes from being nasty or trying to give people setbacks or whatever. But do you have a sense of what that might be? Is it training? Is it a lack of training?

Kory Langwell (44:30)

Yeah.

The Role of Medical Professionals in Rehabilitation

I think yeah, you see a lot of like GPs, general practitioners, they don’t really have great training in like neurological rehab. So if it’s a PM and R doc, like a physical medicine and rehab doc, I find usually they’re a little more

open-minded or or willing to s you know see the the progress or or whatnot over time. If you go into a doctor’s appointment, you show up in a wheelchair and it’s been, you know, six months, the doctor’s probably your general practitioner is probably gonna be like, well, this is what it is. It’s been six months. And I think some of that is from old research that came out that you can’t make progress after six months to a year, which was more because they just stopped therapy, they stopped doing things and you know, didn’t see progress because of that. So it’s, you know, yeah, if you don’t do anything and you just sit on your butt,

all day you’re you’re not gonna see progress or you’re not gonna change. So but yeah as far as from a doctor’s standpoint it it can also be case by case with the doctors as far as their own experience and whatnot. And I don’t think necessarily they ever mean like harm or anything.

Maybe they are trying to be realistic with clients as far as like this is what I’m seeing. I don’t think you know, the chances of this are slim, but they they it’s probably just a way of wording it better versus saying you’re never gonna do something again because there’s so many different things that are coming out, like research wise, treatment, you know, like things change drastically now. so it’s I I just like to to leave a at least leave the door open for people to see that improvement. So yeah.

BIll Gasiamis (46:16)

And walking doesn’t have to be the way you walked before. It could be a different version. It looked differently, feel differently, but it can still be walking. also I think it’s from ignorance, right? And again, ignorance, I don’t throw that out as a way to attack somebody, but it’s like literally that person hasn’t been in the space where Kory might work. They haven’t been in a space where they have seen people overcome some difficult challenges.

Kory Langwell (46:23)

Yeah.

BIll Gasiamis (46:41)

So they just make a assumption based on old thinking or something they heard in the past or old research that just stuck. And they’re just telling you, your job, your responsibility is to find new research to overcome that challenge because that research, it’s so bad if there was some and if they disseminated it to all the population in the medical community, and that has been continued to be passed on. I mean, that is so crazy that it persists and now.

I just want to encourage people, do not believe anyone that tells you, A, you’ve hit hit a plateau, B, that you’re never going to do something again. And even though that might be true, just don’t believe it because there might be a technology around the corner that happens to solve that problem for you. You just don’t know about it yet. And always work towards the solution rather than focusing on the problem is kind of how I see it. And that’s generally what you guys tend to do. You guys tend to help people focus on.

Kory Langwell (47:27)

Yeah.

Yeah.

BIll Gasiamis (47:41)

How do we overcome a problem? What’s the solution to this?

Kory Langwell (47:46)

Yeah, I think using it as motivation is is huge. So like you can take anything somebody tells you, you can take it one of two ways. And if you let it get you down, that’s up to you. Or if you’re like, Okay, I take that feedback, I appreciate it, but I’m not gonna accept it and use it as motivation to to strive to do better and move better. Like that that’s up to you. and who somebody is in their own, you know, life. So I always tell people it’s like, Well, what do you want to work on? You know, if some people are like, I don’t wanna do this anymore, I don’t wanna exercise, it’s like that’s up to you. So

And other people they’re like, I want to push as hard as I can, I want to do what I can do. And so it’s really, you know, up to the what that somebody wants to do with their life and their progress, their recovery.

BIll Gasiamis (48:28)

Kory, it’s been an awesome conversation. Thanks so much for joining me on the podcast and saying yes when I reached out to have you on here and share your wisdom. Can you tell me where can people go and find th information about you?

Kory Langwell (48:44)

Yeah, so our our main website is unlimitedpotential.biz and you we have a health coaching page on there where people could message me on there if they want. I’ve had some people reach out. I’m pretty active in TikTok on on like DMs if people in my private messages of people reach out there as well. Dr. Kory, K-O-R-Y, stroke recovery PT.

and then I’ll we’ll try to get you the handle there, the links on all that stuff. Those are probably the two best ways to reach me. I will say it’s really hard to give specific advice over a text or an email or whatnot. So I and there obviously I understand like there’s a lot of people that have financial issues or they they want the free advice or whatnot, but it’s just it’s really hard as a therapist to give a lot of that. I try my best and I can’t reach everyone doing that, but we really are able to to make a difference when we do work with people one on one. So yeah.

BIll Gasiamis (49:36)

Yeah. There might be programs that people can look into that you are offering either in house or somewhere else. That’s probably why I would encourage people to reach out to get an answer about your specific issue. Dr. Corey’s not going to do that. just like many people can’t answer a specific question about a problem that you may or may not have un unless they have information about your data or you know, they’re your physician or they have your scans and all that kind of stuff, that’s not gonna happen. But that’s okay.

people can still follow you because your tips on TikTok are really cool. They’re on the mark and that’s where I love listening and learning from you.

Kory Langwell (50:16)

Thank you, I appreciate it. I’ll keep coming.

BIll Gasiamis (50:19)

Yeah, definitely

keep them coming, man. it’s been a great thing, this social media thing because it brings information to people that otherwise wouldn’t be able to access it. Some people might be stuck with the doctor who said, You’re never gonna do this again. And that would be the most terrible place to be stuck and have nobody else to kind of throw a spanner in the works in that type of thinking and then suggest something more, more hopeful, more positive.

Kory Langwell (50:34)

Yeah. Yep.

Yeah, absolutely. And it’s always good. I mean, I learn from stroke survivors all the time on what they’re going through. And it’s just, you know, it’s everyone working together around the world now. So I’m in I’m in California and we have, you know, like we’re talking you’re in Australia. I’ve talked to people all over the world now and it’s it’s just been great to to open those doors to a lot of people and you know, at least have conversations with them. So

BIll Gasiamis (51:09)

Doctor Kory, thank you so much for joining me on the podcast.

Kory Langwell (51:11)

Yeah. Thanks. Thanks for having me.

BIll Gasiamis video 25, image (51:13)

Well, that was Dr. Corey Langwell, Doctor of Physical Therapy and founder of Unlimited Potential Physical Therapy. All of Corey’s links, his TikTok, YouTube, Facebook, his eSteam recommendations, and how to reach him directly are in the show notes. If you want to work with him, head to unlimitedpotential.biz. If today’s conversation got you thinking about your own recovery, I’d love to hear from you at unlimitedpotential.

If you want to go deeper on the mindset and tools that shaped my own recovery, my book, The Unexpected Way That a Stroke Became, the Best Thing That Happened, is available at recoveryafterstroke.com/book.

Now a very special thank you to the people who made this show possible. To everyone who has donated, shared an episode, left a review, sent in feedback, commented, or bought my book, thank you. You have no idea how much it genuinely means. This is what keeps the show alive. and a warm welcome to our newest YouTube members. Jennifer, Brett, Damien, Keith, Trisha, Shanna, Hala.

At Desselvi at Antomic Clavers and Barbecue Queen 7083. Thank you for joining and for your support. And a heartfelt thank you to our newest Patreon supporters, Kathy, Jennifer, and Laurie for contributing financially to keep this podcast going. It means the world to me. Thank you for listening. I’ll see you in the next episode.

The post She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell appeared first on Recovery After Stroke.

Falls Prevention After Stroke: What the Latest Research Reveals About Staying Safe and Mobile

For many stroke survivors, the fear of falling is a constant companion. It’s there when you get up from the couch, when you navigate the kitchen, when you try to walk further than you did yesterday. That fear is rational, falls after a stroke are common, and their consequences can be serious. But according to Associate Professor Kate Scrivener, a stroke rehabilitation researcher at Macquarie University, that fear doesn’t have to define your recovery.

In Episode 409 of the Recovery After Stroke podcast, Kate returns to the show where she first appeared in Episode 257 to discuss her HiWalk walking program and share the results of two major research projects: the published Phase II results of HiWalk, and a new systematic review focused specifically on exercise-based falls prevention after stroke.

Who Is Kate Scrivener?

Associate Professor Kate Scrivener leads stroke rehabilitation research at Macquarie University in Sydney, Australia. Her work sits at the intersection of real-world clinical practice and rigorous research. She doesn’t just study stroke recovery, she designs and tests the programs that can change it. Kate first appeared on this podcast to talk about HiWalk, a high-dose walking intervention designed to push the limits of what long-term stroke survivors can achieve. Now, with the results published, she’s back to talk about what the data actually showed and what it means for survivors who want to reduce their fall risk.

The HiWalk Results: What Happened When 47 Survivors Walked Hard

HiWalk was built on a straightforward but ambitious premise: what happens if stroke survivors, who have been living with their disability for years, are given a truly high-dose walking program? Not a gentle weekly session, but 43 hours of structured walking across just three weeks.

The Phase II randomized trial enrolled 47 participants and produced results worth paying attention to.

Attendance was 91%. Retention was 98%. For a physically demanding trial involving chronic stroke survivors, those numbers are remarkable, and they tell their own story about what survivors are capable of when given a real opportunity.

For participants who were not already in active rehabilitation at the time of the trial, walking speed improved by 0.24 metres per second, a clinically significant gain. Self-efficacy, a measure of how confident participants felt in their own ability to walk and function, also improved significantly.

The overall group walking speed trend was positive but did not reach statistical significance across the full cohort, partly because HiWalk was a Phase II feasibility trial, designed to test whether the program could be delivered safely and whether participants would complete it. It was not powered to detect large group-wide effects. What it demonstrated is that this kind of high-dose program is feasible, achievable, and produces real gains for the right participants.

Why Falls Prevention After Stroke Is Harder Than It Sounds

Falls after stroke are not simply a balance problem. They involve fatigue, reduced sensation, spasticity, cognitive changes, and the interaction between all of those things in the unpredictable terrain of daily life. Most stroke survivors are told to be careful. Very few are given a structured, evidence-based program designed specifically to reduce their risk.

Kate’s systematic review, published in Clinical Rehabilitation in 2026, searched the global literature for exercise-based trials targeting falls prevention in community-dwelling stroke survivors. Only three trials worldwide met the inclusion criteria.

That number alone says something significant. Falls after stroke are widely acknowledged as a major problem. The research base for solving it is thin.

Of the three trials identified, exercise trended toward reducing the rate of falls, but the effect on the total number of people who fell was less clear. The standout result came from the FAST trial, which reduced fall rates by 33%. All three qualifying trials were conducted in Australia, raising important questions about whether these findings can be replicated in different healthcare systems with different levels of access to physiotherapy and structured exercise.

What This Means for Stroke Survivors Right Now

Kate’s research points to two things survivors and their families can act on.

First, walking intensity matters. The HiWalk results suggest that long-term survivors who have plateaued in conventional rehabilitation may have more capacity than they or their clinicians assume. High-dose, structured walking appears to produce gains that lower-intensity programs don’t reach. If you’re a survivor who has been told to keep active but hasn’t been given a specific, progressive program, that’s worth a conversation with your physiotherapist.

Second, exercise for falls prevention works, but it needs to be the right kind, delivered consistently. Gentle movement is valuable. But the evidence base Kate’s review maps out points toward structured, progressive exercise as the mechanism that shifts fall rates meaningfully. The FAST trial’s 33% reduction didn’t come from telling people to be more careful. It came from changing what they were physically capable of doing.

Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, explores the tools and mindset shifts that underpin a recovery built on action rather than waiting. You can find it at recoveryafterstroke.com/book.

The Gap Between Research and Practice

One of the most important threads in this conversation is the distance between what the research supports and what most survivors actually receive. Kate’s systematic review found only three qualifying trials globally. HiWalk’s feasibility results are published, but the next step, a large-scale Phase III trial, requires funding, time, and institutional will.

For survivors, that gap can feel frustrating. The science is pointing in a clear direction. The programs aren’t yet widely available. Kate’s work is part of closing that distance.

Listen to the Full Conversation

Episode 409 with Associate Professor Kate Scrivener is available on all major podcast platforms, search Recovery After Stroke and on the Recovery After Stroke YouTube channel.

If this show has helped you on your recovery journey, you can support it financially 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.

Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground (Interview)

Researcher Kate Scrivener on why falls after stroke aren’t inevitable — and what high-dose walking programs can change.

Highlights:

00:00 Introduction – Falls Prevention After Stroke

07:04 Effectiveness of Rehabilitation for Non-Therapy Patients

13:01 Falls Risk and Prevention Strategies

20:53 Tailoring Exercise Programs for Individual Needs

26:48 Barriers to Implementing New Treatments

35:23 The Importance of Patient-Centered Research

41:32 Future Directions in Stroke Rehabilitation

Transcript:

Introduction – Falls Prevention After Stroke

BIll Gasiamis (00:00)

Well, hello everyone. Welcome to Recovery After Stroke. I’m Bill Garciamas. Today’s guest is someone who has been on the show before, and I’m glad she’s back because the last time we spoke, she was in the middle of a research program that I thought had real potential to change things for long-term stroke survivors. Now the results are in. Associate Professor Kate Scrivener is a stroke rehabilitation researcher at Macquarie University in Sydney, Australia.

Her work focuses on what happens to survivors after formal rehabilitation ends, what’s possible, what the research actually supports, and what the gap looks like between current clinical practice and what survivors could be doing.

In episode 257, Kate joined me to talk about High Walk, a high-dose walking program she designed for people living with chronic stroke. In this episode, she returns to share the published phase two results of that trial and to discuss her new systemic review on exercise-based false prevention after stroke. That review searched the entire global literature and found just three qualifying trials.

That number tells you a lot about where the research is and why conversations like this matter. We cover the high walk data, what 43 hours of walking over three weeks produced in 47 participants, what the fast trial found about reducing fall rates, and what survivors can actually do right now based on the evidence. If you’ve found this podcast useful on your own recovery journey, I’d love for you to pick up a copy of my book.

The unexpected way that a stroke became the best thing that happened. You can do that at recoveryafterstroke dot com slash book. It’s the story of my stroke and ten tools that shaped my recovery. And if this show has helped you, you can support it financially at patreon dot com slash recovery after stroke.

Every contribution keeps the podcast going.

BIll Gasiamis (02:00)

Associate Professor Kate Scrivener. Welcome to the podcast.

Kate (02:04)

Nice to be back, Bill.

BIll Gasiamis (02:07)

Nice to have you back. Last time you were on, we spoke about a project that you were working on called High Walk, which was at the early stages of the project, was which was about determining whether or not people who did more rehabilitation in a short amount of time, like and a a you’ll tell me exactly what the words are in a minute, whether they were going to benefit from that type of protocol.

As far as how that would impact their walking after stroke. and it was in the very early days, it was in the recruitment phase of the project that we spoke about it. We were hoping to recruit some people in Melbourne to come on and participate in the study. Can you give me a little bit of a rundown of what happened after you did recruit people and actually ran the study and what the study found? And then we’ll go into talking about.

One of your most recent studies that you’ve just released and has been published.

Kate (03:10)

Yeah, thanks very much, Bill. So we have we were successful, you helped us a lot because we definitely found some stroke survivors in Melbourne who tried the program with us. And so we ran the study

BIll Gasiamis (03:26)

Okay, so just a bit of context for everyone who missed the first episode with Kate. High Walk was a structured walking program delivered in the community, not in a hospital, not in acute rehab, but for stroke survivors who had already been discharged and were living their lives. The format was three hours a day, five days a week for three weeks. Forty-three hours of walking training in total. The question was simple.

Would people actually do it and would it help? Now I’ll link to the published paper in the show notes.

Kate (04:02)

with 47 stroke survivors. I think it’s really important to remind you that this was set in the months and years following stroke. So in the community.

when people had been discharged, most of them had been discharged from their other rehab. And we offered a very intensive program to try and improve their walking. We offered three hours a day, five days a week for three weeks. And on purpose really wanted to do something different and try an extreme, well it’s not extreme, but try a very high dose program. And our first finding,

was actually that people could do the program. So they really attended 91 % of the session and did over 500 exercise reps or steps of walking for every hour of the program. So I have to say that honestly I was surprised. I thought we might find that they’d attend some of the program but not

at all to the degree that they did, which was just fantastic.

BIll Gasiamis (05:17)

What what is it

about that that you found surprising? Now, I’m okay with people making assumptions, whether they’re researchers in stroke, whether they’re doctors dealing with stroke survivors, but I just really want to kind of get an understanding of where people what the perception of stroke survivors are out there. Cause I know that we look some of us look really injured and and have deficits that are obviously visible, and then there’s the

neurological deficits that people experience that you can’t see but people understand like can cause lack of commitment to exercise and all that type of thing. W what is it from your perspective that you think makes people underestimate stroke survivors?

Kate (06:05)

I do think three hours a day, every day is a big commitment. And when we spoke to the stroke survivors, they definitely talked about that, about needing to adjust the other things in their life, which may be work, maybe their other appointments, you know, all sorts of things in order to fit the program in. And anytime you do a study like this, where you’re really testing the concept, you’re testing the feasibility,

you’re trying to learn, you know, would they put, would people put aside their life for three weeks and commit to this three hour a day program? And I, you know, we, that’s why we test it within the trial to see if that is something that people would do. Do they feel that it would be value, it was valuable and it was worth giving up their time for?

Effectiveness of Rehabilitation for Non-Therapy Patients

Would they do it again? All of those kind of questions, which is really trying to shake up the norm in what is offered to people in the months and years after their stroke. Because who’s to say people should have access to no therapy? Who’s to say people should see a physio now and then? Maybe this kind of model of really working hard towards a goal for a short time.

is actually much more suitable and preferred by stroke survivors.

BIll Gasiamis (07:35)

I love it. I think it’s preferred because a lot of stroke survivors have got heaps of time on their hands. And we’d love to fill that time in. But also to be helpful. What I found, Kate, is there so many stroke survivors want to help other stroke survivors. And if they can be involved in a study that does that, they get excited. But also they see it as a cheap way to get into a program that they otherwise would not have gone. Now, what I say cheap, like that.

Kate (07:41)

sounds.

BIll Gasiamis (08:03)

an easy access way because sometimes get to get exercise fund funding for an exercise program is huge. to get back into a program after you’ve fallen out is difficult. And stroke survivors just look for any opportunity to be involved in a program, even if it’s going to test them. But what I love about it, it’s testing them, but it’s kind of done under supervision. So I think it’s a very safe environment for people to be involved in.

And I think that makes it a little bit easier to commit.

Kate (08:35)

Yeah, I think the first thing that you said really resonates, you know, even when people would ring me to volunteer or find out about the trial, their keenness to give it a go, their keenness to try something different and improve their walking was incredibly obvious. And most people really were very keen to participate, which was fantastic.

We definitely, you know, I think having that scaffolded, supported program was really important and we had very few adverse events. you know, there were, I won’t say there were none, there were a few times where people came back, we saw muscles and things, considering the amount of people and the amount of exercise they did, it was really very few. So I think we’re pretty confident that running it in that way is safe.

BIll Gasiamis (09:31)

Yeah. Well in total I think it was forty three hours of walking in three weeks.

Kate (09:37)

Correct, yeah.

BIll Gasiamis (09:38)

Yeah, that’s a massive effort for anybody really. Forty three hours, three weeks. I mean, most people don’t do anywhere near that, I don’t think.

Kate (09:43)

Thank you.

Correct.

BIll Gasiamis (09:48)

So there was an improvement, right? There was an improvement in walking speed. But what does that actually mean in someone’s life, especially a stroke survivor?

BIll Gasiamis (09:58)

Walking speed sounds like a pretty dry measure, but the reason researchers use it is because it maps almost directly onto what you can actually do in your life. There are established cutoffs, specific speeds that determine whether you can walk only around your house, whether you can get outside in your neighborhood, or whether you can move freely in the community. So when Kate talks about improvements in walking speed, she’s really talking about what

Doors open up for you.

Kate (10:30)

Yeah, so walking speed is a pretty cool measure actually. And it’s why we pick it because it seems pretty objective and pretty black and white. You you can walk faster. That’s great. But there’s actually been a lot of work to show that that carries over to what people can do in their life. So we’ve got some pretty clear speed cutoffs, which mean you’ll only be able to walk around your house. However, if you can get past the cutoff, you can start to walk.

outside in the community and if you get past the next cutoff you can actually walk more freely in the community. So it is really closely associated with what people can do which is why we picked it. And look the results were promising, they definitely were, but we learnt a really big lesson and that was

And again, this is exploratory in this kind of early study, but what it looks like to us is the program is most effective for those stroke survivors who are not doing therapy or active rehab. And really that’s what it was designed for. It’s designed to offer something for people when they need it as a boost, assuming that they’re not really accessing much therapy and going.

about their lives. But we did have some participants who were doing other therapy and it looked like it didn’t give those participants as much of a boost, which, you know, again, you don’t want to read too much into that, but perhaps if you’re already doing therapy, having a high dose boost isn’t as important or as effective. It’s really effective if you’re not doing therapy at the time.

BIll Gasiamis (12:19)

Yeah, like a kind of like a kick start, get things moving again and things going again.

Falls Risk and Prevention Strategies

Kate (12:23)

And again, mean, and you guys tell me, you guys being stroke survivors, you know, tell me what you would prefer to access. The people who participated in the trial were really positive about it, said they would do it again and liked that idea of, you know, maybe doing a short, intense boost when they needed it. You know, maybe it’s every six months, maybe it’s every year. We don’t know yet.

versus, you know, maybe other people would prefer that kind of regular contact with a physio over time if that was possible for them. It’s really trying to challenge and think about different models, different offerings. And I’m particularly interested in the group of people who I know it is much harder for them to access therapy, as you said, Bill.

at some times it can be you pay for it or there’s not very much on offer. So can we find something that we can offer? Yeah, people who otherwise can’t.

BIll Gasiamis (13:24)

Mm.

And it’s something especially that’s effective, right? But what I love about it is perhaps the amount of hours that you required people to participate in walking, perhaps that also sort of breaks down some mental barriers of what people think they’re capable of. ‘Cause I imagine that initially if somebody overthought that even a little bit, they might be going, Forty three hours

Kate (13:49)

Yeah.

BIll Gasiamis (13:57)

of walking in three weeks. I don’t think I can do that. I’ve never done that. But then to find themselves in a position where they have done that might sort of trigger them to go down the path of, well, if I can do that, well then maybe I can do this. And then get them curious about other things that they’ve been assuming or defaulting to. No, I can’t do that.

Kate (14:17)

Yeah, Bill, we’ve got some work coming out soon, which is the interviews with the stroke survivors. And what you just said, there’s a quote that almost beautifully reflects that, just that idea of I didn’t think I could do it, but I wanted to give it a go. And I was really surprised with what I was able to do. And I think that’s absolutely brilliant.

BIll Gasiamis (14:41)

Yeah, very good. So your research keeps landing on the same group of people, people who have finished formal rehab and have no ongoing support. Is that gap getting better or worse? I have a suspicion I know.

Kate (14:57)

in Australia. Look, I will say generally until High Walk when we’ve done studies including stroke survivors, it has been the exception rather than the norm to be accessing ongoing therapy. Most of the time we can pretty much assume that their usual program will be no ongoing therapy.

BIll Gasiamis (14:59)

Well, let’s talk about Australia, yeah.

Kate (15:28)

I will say with High Walk, we did see a group of stroke survivors who were able to access ongoing therapy with programs like the NDIS.

BIll Gasiamis (15:41)

so for listeners outside of Australia, the NDIS is the National Disability Insurance Scheme. It funds support and services for Australians with permanent disabilities and depending on your age and level of impairment after stroke, you may or may not qualify. It’s a system that’s helped a lot of people, but as Kate points out, navigating it is a whole other challenge.

Kate (16:04)

And so we probably saw it split a bit more in people that couldn’t access ongoing therapy and some that could. Now, is that better or better or worse? You know, some get some, but I think

Part of the challenge in our system at the moment is it is so disjointed, so confusing and depending on your age and your level of disability, there may be something on offer for you, but there may not be. And I can only imagine how challenging and frustrating that is to navigate in the lived experience of it.

BIll Gasiamis (16:45)

Yeah. That that kind of brought you to your new study on falls. So stroke survivors fall t at at what roughly twice the rate of the general population kind of makes sense to me again. but why is it specifically? from my p experience it was learning to work walk with a new feeling in my left leg, proprioception issues, weakness, all that kind of stuff.

and maybe it was the way that I was initially connecting to my new new feeling. I wasn’t realizing that I was not as capable as I I was before. So I’d just get up and do a normal thing and have to and and not thinking about what I had to do would put me in a vulnerable position. I’d fall. Early on I was falling heaps. when I say heaps, you know, I fell two or three times, which was way more than I normally fell. but then later on I didn’t

I didn’t fall so much. W why do you think it is that specifically stroke survivors fall more often after a stroke?

Kate (17:55)

Like we do have some research answers for that, but they’re not rocket science. They would tell you things like, you know, stroke survivors typically have worse balance performance, which is linked to them falling over a bit more. I think the challenge in stroke is that the problems that people can experience after stroke are so wide and varied and many of them.

will increase that your risk of falling over. you know, whether it’s not being able to feel your leg as well, whether it’s your vision being affected by stroke, you know, there’s so many different things which can compound people’s falls risk. Yeah, and people after stroke are at a much higher risk of falling over.

BIll Gasiamis (18:45)

So it sounds like it’s so broad. There’d be so many different reasons. Vision is a really good one that I haven’t associated with falling because I don’t have vision issues. But that makes complete sense. then I I know there’s a lot of people have fallen because they have foot drop, and so on. So it’s probably one of those so many ways to end up on your butt after a stroke, I suppose.

Kate (19:11)

Yeah and like it falls beyond stroke are just a huge problem in Australia you know the health care system is full of people who have fallen and injured themselves so it is a really big issue and only compounded for people after stroke.

BIll Gasiamis (19:29)

Yeah, so it’s a big issue for people as they age as well.

Kate (19:33)

Yeah, absolutely.

BIll Gasiamis (19:34)

Okay. So then you did a systemic review of every trial testing exercise for falls prevention in stroke survivors, right? And only found three qualifying trials in the world.

Kate (19:46)

That’s right.

BIll Gasiamis (19:51)

I want you to sit with this for a second. Kate and her team searched every major research database, going all the way back to the beginning, looking for trials specifically designed to test exercise as afall prevention tool for stroke survivors. From that entire global body of literature, only three trials met the criteria. Three and stroke survivors fall at twice the rate of the general population.

That gap between the problem and the evidence is exactly why this work matters.

BIll Gasiamis (20:26)

So what does that tell us about where the field is at?

Tailoring Exercise Programs for Individual Needs

Kate (20:29)

Well, the first thing to say, Bill, is they’re all done in Australia as well. So there are a lot more trials. They’re just not this small trials and trials that were doing things like trying to improve balance, but weren’t really trying to prevent falls. They kind of measured falls on the side rather than it being the real purpose of their study. So there’ve been three

quite large studies all done in Australia. And one of them was done by myself and my colleagues. And we did it, finished it very recently. And that was called the falls after stroke trial. And it was the first trial worldwide to actually provide an intervention and clearly prevent falls after stroke. So we were able to reduce falls by 33%.

in people that did the FAST intervention. So that was really exciting. And we wanted to kind of understand that relative to the other big trials that we knew existed and see if that gave us a body of evidence, which is why we did the systematic review. And look, the systematic review is not, you know, convincingly positive, but definitely looks like…

targeted exercise designed to prevent falls can reduce falls. But importantly, and both in the trial and in the review, even though it reduces falls, it doesn’t stop a person having falls completely. It just reduces how often it happens. And in people after stroke, who as we’ve said are at much higher risk of falling,

that is actually a pretty common result. we see that in other health conditions where they’re at high risk, that programs can decrease the risk, but very rarely take it away completely.

BIll Gasiamis (22:41)

Yeah. So you know that it doesn’t r reduce the number of people who fall, perhaps mm the same number of people that fall, but they’re falling less often. Is that what it’s finding?

Kate (22:54)

Exactly right. Yeah.

BIll Gasiamis (22:55)

Just to make sure that distinction lands clearly, what Kate is describing is that exercise reduced how often people fell, but didn’t necessarily reduce the number of people who experienced a fall at all. In a population as high risk as stroke survivors, even reducing the frequency is a meaningful result. It won’t show up as dramatically in the statistics, but in someone’s life falling three times instead of six times is a very different year.

BIll Gasiamis (23:26)

And in that study, is there an aspect or is there a part of the study that helps people learn how to fall? I remember when I was a child doing karate or something and they specifically teach you how to fall. Is is there a little bit of that in there?

Kate (23:43)

That’s very good idea. I guess what we did do was we put the whole program in the context of a person’s life. So we looked at their home. We looked at the safety around the home as in were there any risks and if there were risks we might try and eliminate them or we might practice them. But we also looked at

their where they go, you know, so going out in the community and again, what risks and what could we practice with them? So we did turn the lens of trying to stop them fall over, but very much in their natural kind of context. And of course we incorporated some exercise, which you won’t be surprised to hear. So they did particularly balance, but also balance and strength.

exercise. The cool thing for me about this program was the exercise was done a bit differently. So we call it habit-forming functional exercise and basically that means you don’t, it’s like the opposite of high walk, you don’t sit down and do a program for three hours but you look for opportunities during the day to do a little bit more. So you look for times where you might normally not be very active.

like when you’re waiting for the kettle to boil or something to make your cup of tea at night and you put an exercise in in that situation. So you’re doing lots of little bits extra, which the theory, you know, across a day is it can add up to quite a bit more than you’d otherwise be doing. And it’s been very interesting to run two very different trials at similar times and really look

you know, lots of people loved that habit forming approach. Some people loved the coming into the gym and doing multiple hours a day, which I think really highlights to me how we need to think about having different options and understanding what, how the person after stroke would like to continue to exercise.

BIll Gasiamis (25:59)

Has previous rehabilitation programs been f developed in a different with a different thinking style, like as in we’re gonna offer this and everyone needs to come to that. It’s like a one size fits all type of situation. Is that how they’ve come to be?

Barriers to Implementing New Treatments

Kate (26:17)

Yeah, and look, very often we do kind of research one program versus nothing. You know, later in the journey, sometimes we might compare programs to each other. But, you know, even in that situation, mostly in clinical trials, people are put in one group. It’s not the group they’d necessarily choose. Whereas I think if I have my clinician hat on now and I was working with someone, I’m much more

kind of thinking about what’s their style, what would they like to do, yeah, in terms of exercise. Cause I think you’re right, there is definitely not a one size fits all. I mean, there’s not amongst us all, are there? all

BIll Gasiamis (27:05)

That finding stopped me. A well-intentioned exercise program offered to everyone equally actually increased falls in the stroke survivors who were already the most vulnerable, the slower walkers. That’s the danger of one size fits all thinking in stroke rehab, and it’s exactly what drove the design of the fast trail that Kate goes on to describe.

Kate (27:28)

choose to exercise and find ways to exercise in our own way. And we like different things. So why would it be any different really after the stroke?

BIll Gasiamis (27:37)

Yeah.

Got it. Also, in healthier adults, exercise clearly prevents falls. So but but that doesn’t translate to stroke survivors. And we may have touched on it a little bit earlier when I asked a similar question, but is there kind of an understanding as to why that is? Is it again the generic standard because of the challenges that stroke survivors face with balance and w and perhaps weakness on one side or foot drop? Is that the same kind of

Kate (27:46)

Yeah.

think we already touched on the facts of how complex it was. I think one of the light bulb moments for me is a fantastic mentor to me is Professor Cath Dean. And she’s very interested in falls and a number of years ago did one of the other big studies. And in that big study that she did, she offered the same exercise to all the stroke survivors.

And then after she finished, she tried to, overall didn’t prevent falls and tried to unpack the results. And what she found was that in people that were better at walking when they did the program, she did prevent falls. But actually in the stroke survivors that were not as good at walking, they fell more with the program. And so I think back to what we just touched on.

Probably that one size fits all approach isn’t particularly helpful after stroke. And so Cath Dean designed the falls after stroke trial with Professor Lindy Clemson. And what they really thought about was tailoring it to people’s needs. So people that were slower, we focus more on their home and on safety and on exercise, yes, but within their ability.

Whereas people that were faster, we focused on really improving their balance and when they were going out and about making sure that they were at their optimum level to do that. And I think that distinction and thinking about people’s ability and that informing kind of what we put in place to try and help them prevent falls was really important. And perhaps that’s why

We were the first trial to get a big reduction in falls. Yeah, time will tell.

BIll Gasiamis (30:14)

Time will tell. And also like, how do you have a conversation with a stroke survivor now, given the uncertainty of the evidence, right? Like, should I exercise to avoid falls? how d how do you have that conversation? Because I imagine you have to have there has to be an opportunity for an assessment to determine the best way to go about putting that stroke survivor in a program or or or kind of r recommending a positive

regime, maybe.

Kate (30:48)

Yeah. So I think the broad answer would be, should you exercise to prevent falls? Absolutely. But should that exercise be tailored to you? You know, you probably need a pretty careful assessment and that exercise really at your right level of function. Plus that might not be enough. You might need the other layers like having a look at your home.

and look at how you get out and about in the community. Probably look just doing one aspect may not be enough to have a big impact on falls. For some people it might be, but I probably would think more about things other than just exercise.

BIll Gasiamis (31:36)

Got it. You know these amazing studies that you guys put time, effort to, money, stroke survivors put their resources to. W what happens with the information that you guys gather after the study? Where does it go? How does it get implemented? Does it get implemented?

Kate (31:54)

That’s a very good question. So of course we try and publish it and most publications are freely available and clinicians and health services obviously should be reading and digesting them but you can imagine how many articles get published every day. Most clinicians can’t keep up with that volume of evidence. In stroke we are extremely lucky because

we have stroke guidelines, which give us a summary of the evidence and really tell us as clinicians what we should be offering people after stroke. And the really cool thing in Australia is that they are living guidelines, which means as new evidence comes in, they’re constantly being updated to incorporate that

BIll Gasiamis (32:47)

Those guidelines are freely available at strokefoundation.org.au. I’ll put the link in the show notes. If you want to know what the current evidence says about any aspect of stroke recovery, that’s the place to go. And as Kate mentions, they’re living guidelines, which means they’re updated as evidence comes in, including the research we’re talking about today.

Kate (33:08)

new evidence. So clinicians have one spot.

to look, which will have a summary of the latest evidence and whether it should impact on their practice, which is pretty cool.

BIll Gasiamis (33:21)

Yeah, who puts

that together? Who puts that whole thing together?

Kate (33:25)

That’s the Strait Foundation bill, but it relies on a large team of volunteers, which I am also one around Australia, who volunteer to look at the evidence coming in for new topics and kind of work out whether it changes the guidelines or needs to be incorporated into the guidelines based on some set criteria.

BIll Gasiamis (33:53)

And then clinicians in what environment? Like would they be in a physical rehabilitation setting where they would have perhaps be developing a new program for their clients? I how would they access that information and then implement parts of it or all of it or some of it?

The Importance of Patient-Centered Research

Kate (34:15)

So it’s freely available. Anyone can go on and look at it, which is fabulous. I think you’re touching on a very important point though, which is having the information there and freely available doesn’t mean that it translates to clinicians doing it, you know, doing their everyday work day. It is much harder. And okay, let’s look at a new piece of evidence that we’ve just done as an example.

So I just led a Cochrane review on an intervention which is called electrical stimulation. And electrical stimulation means that you have electrodes on your skin and it can be very helpful if you’re very weak to improve strength in a muscle. And if you can’t do an activity to help activate the muscles, so you can start to perform that activity. And our Cochrane review

showed very positive results, particularly for improving strength. But for clinicians to do this treatment in their everyday practice, they have to have access to the machine in this case. They have to know how to use the machine. They have to know how to troubleshoot the machine if it’s not working. The stroke survivor has to want to try the machine.

It’s not painful, but it can feel a bit weird. Some stroke survivors I’ve tried it with don’t really don’t like the feeling of it. So there are a whole lot of factors that might mean the clinicians aware of the evidence, but it gets lost in between the actual doing of the treatment. And we try and do some work to bridge that gap, to actually work with

BIll Gasiamis (36:01)

Yeah.

Kate (36:11)

clinicians to help them to implement these things in their everyday practice and to know how to do that. And so for the review, what we were then actually asked to do was to write a paper for clinicians, which gave them some guidance and parameters for how to actually do this treatment within the clinic.

BIll Gasiamis (36:39)

Is that part of the funding of the study? Does that get kind of rolled in so that you can do the study, find the findings, see what is useful, report on it and then help people implement?

Kate (36:55)

Look, it can be, it absolutely can be and a lot of our government funding sources really want that bill. They don’t want you to just do it, they want you to say and how are you going to prepare for rolling this out nationally. But for most studies it’s doing a whole other study again which you need new funding for in order to roll it out. So if we look at the falls after stroke trial

highly effective. We’ve planned for how we would share and scale that across Australia. We planned that whilst we were doing the trial. But to really then practice and send it out on scale, we will need more funding for another trial. It’s called a Phase 4 implementation trial, just in case anyone’s interested.

in order to then systematically roll it out and look at what are the essential features that help us take it from being an effective idea to actually something that’s offered in everyday practice.

BIll Gasiamis (38:10)

I imagine the findings have to be pretty skewed in the positive so that it can go to that phase four stage.

Kate (38:16)

Absolutely. Yeah, I mean, if it didn’t work, there might be nothing to roll out necessarily, which makes sense. Sometimes there is because sometimes your control group might do something and you might say, well, actually doing that intervention that we didn’t think would be as good was actually quite good. And we can roll that out. So sometimes

BIll Gasiamis (38:26)

Makes makes sense, yeah.

Kate (38:46)

know, which is why we do research because you learn surprising things all the time about what works and what doesn’t work.

BIll Gasiamis (38:54)

Yeah. When when you talk about that those findings then being rolled out in clinic, like what kind of a clinic? Is that a occupational therapy clinic? Is that a physical rehabilitation clinic? Like w what kind of space does it get rolled out at and to who? So does it get rolled out to a couple of people who then train the others? How does that work?

Kate (39:19)

100%, they are fantastic ideas and thoughts. as you would think that as researchers, we just do the science and leave it, but we have to, especially in Australia where it’s very complicated, think practically about, where is this, where does this intervention sit in the longer term? And look, there is debate on that because some people say, don’t let that restrict you. If you’ve got a new idea, try your new idea.

and worry about that later. But I think if you’ve been a clinician and you’re practical in your thinking, you know, I’m always, so for our high dose program, I still don’t know where it sits longer term, but I spend probably too much time thinking about it. You know, it doesn’t sit in healthcare. You know, do you go back to a community rehab or community health center at your local hospital to access it?

in the same way you might access cardiac rehab, you know, when you need it after a heart attack? Does it sit in, you know, disability and aged care sectors and it’s NDIS funded? I don’t even know if that’s possible anymore, you know, or whether they would look at that. But we do. Yeah, I think it’s important to consider that because I want to make sure I’m

investigating something that has the ability to be scaled up and be rolled out so stroke survivors can access it if it is found to be effective. But as you’re saying, there’s no one size fits all. know, High Walk would be run in some kind of clinic or community gym, whereas our Falls program is about therapists coming to your home. And so, you know,

who those therapists are and where they’re coming from needs to be determined. But it is an important question. And now they’ve found it, 100%.

Future Directions in Stroke Rehabilitation

BIll Gasiamis (41:21)

And how they’re funded. And then and

then the stroke survivor kinda knowing about that and saying, Well, I’m at home. This is where I’m at most risk of my falls. I need some support here. Can you send somebody along here? Like even that I I can’t imagine is a conversation that happens. The stroke survivor doesn’t know what they don’t know. So they wouldn’t even probably think that there was a service available if there was one. And then

how you would access that and be funded for that and how you would get somebody to your house regularly to do that. The mind boggles. I wouldn’t even know w where to begin. And that’s one of the frustrating and challenging things. I think the reason why I’d like to have clinicians, researchers on the podcast is to give the stroke survivors an idea of what some of the challenges are when it comes to the amazing work that clinicians, researchers are constantly doing to improve the life of

you know, the ho the cohort that they’ve decided that they’re going to support in their work. And then to kind of make stroke survivors think about like how can they engage with the research that they’ve come across that’s been done. So classic example is now I can jump on any one of my AIs and I can do a very quick research for PubMed articles about falls after stroke.

And it will bring up maybe two or three, maybe and then those two or three will have links internally that will take you to other studies that are of a similar nature. But if I found one of those, I’ve never kind of met anyone that a stroke survivor that would go, Okay, I found this study. I’m gonna go and ask my occupational therapist about it. Can we do something about that? I think the what I’m trying to get at is b the the communication pathway should be

In both directions. It should come from I discovered this because I was curious. I don’t want to keep falling at home. Can you help me implement it or something similar? And then there’s your part, which is normal, the normal part, which is, by the way, I studied this. This is what I found. You should know this. I think it should happen both ways. And that’s kind of the bridge that I’m trying to gap. the gap that I’m trying to bridge is like bring the information to people, but also bring people.

Kate (43:28)

Yeah.

BIll Gasiamis (43:40)

To go and get the information because there’s so much of it. And I’m constantly getting asked, have you heard about this or have you heard about that? And it in the past it was no, I I haven’t, and I don’t know where to go and find out, but now I do. It’s really easy. and I get frustrated when I hear about new studies, new research coming out in my own conversations with doctors and researchers, et cetera, which kind of fell on deaf ears and they were like, mm-hmm.

I don’t know about that or I don’t have time for that or I haven’t looked into that or I wouldn’t know where to start with that. That was having so much information at your fingertips now has never been easier to access and then to get specific information for your specific condition or challenge.

Kate (44:12)

Yeah.

BIll Gasiamis (44:26)

So

so that’s kind of where I’m at with the challenge of so much information, it not getting into the right hands, whether it’s the stroke survivor or the clinician.

Kate (44:35)

And look, I can still remember as a clinician, someone coming to me, actually with a stroke foundation handout and saying, I haven’t received this. Why not? You know, and it’s one of my favourite moments as a clinician, because I just think, as you said, it is so fantastic. And having that active engagement and advocacy, if you’re able to do it, is just brilliant.

It is like, I’m not going to defend clinicians not with the most up-to-date evidence, but only to say it is challenging because the volume of evidence that comes through is a lot. But I do think it is our responsibility to stay up-to-date and to move with the times. And that can be hard because some of the times things we learn at uni, we now know are not the most effective.

thing to offer and we have to be able to let those go and then sometimes new things are proven really effective and we have to be ready to learn and take them up and move with the times and you know as clinicians we have that responsibility and always in my mind is that thought of am I offering the stroke survivor I’m working with the best treatment that I could be offering.

and challenging myself to really be thinking about that. Yeah.

BIll Gasiamis (46:12)

Yeah. How long have you been involved in the field?

Kate (46:16)

more than 20 years. Yeah.

BIll Gasiamis (46:18)

Yeah.

It’s interesting to come across somebody who’s been involved in a field in more than twenty years and still talking about the same problems, the cut through. You know, how do you get to the end user? How does the end user get to you? And how do you update your knowledge so that you can continue to provide the most up to date and fresh knowledge? And I wonder if there is ever going to be a solution or is it just going to be the perpetual question that we always ask?

that we’re always moving towards and never really get to.

Kate (46:53)

I think it’s something we always are going to need to be mindful of. And we probably will never hit the switch where we go, yeah, we’ve just got it because, you know, the science is constantly evolving. I think it does help coming from life as a clinician, because I know what life’s like in a busy, acute, a busy rehab, going to see people at home. I can imagine.

the challenges but was also lucky enough to work in places where we worked together to overcome them and really tried to push kind of for excellence in stroke care and I think having seen that and being mentored by people who were excellent, very passionate clinicians, yeah probably turned me into something similar myself but not you know.

it’s something we have to keep continuing to work towards. And I think you said it very well before, we do these clinical trials, we spend a lot of money, time and effort to show something is effective. It is very important that we then work just as hard to translate it or implement it into clinical practice and make sure that people after stroke get that benefit from it.

BIll Gasiamis (48:19)

What’s the hardest part in this line of work for you to overcome?

Kate (48:26)

That’s a very loaded question, Bill. Honestly, the hardest part is the process of getting the work funded. So we apply for government funding for the research, but there is so much really important valuable research to be done in health across Australia. And so getting our work funded.

BIll Gasiamis (48:35)

Yeah.

Kate (48:54)

is a constant challenge. We would love to do more work. It’s just,

BIll Gasiamis (49:01)

Yeah, I can imagine making yourself stand out and forever spruking your thoughts, your idea as being should being having to be at the top of the funding list would be a never ending and impossible task.

Kate (49:16)

It’s a challenge.

BIll Gasiamis (49:18)

Yeah. and what is the most rewarding part about the work that you do? across the clinic clinical part and the research part, is this something that stands out that kind of makes you get sucked in? I know that if I come across something that’s really rewarding, even if it took me five decades to get there, then I c I I’m chasing the next rewarding dopamine hit in that space and then I’m gone for another four decades. Like what is it for you that makes

that feel rewarding and worth pursuing.

Kate (49:52)

I think it’s thinking about being able to think about what do people after stroke need in order to better their outcome or better their lives. And then being able to think about, what is that thing, design it, test it, know, offer it to stroke survivors and see what they think about it. And if it is effective, I find that whole process really rewarding.

And when people say, yeah, we really like your idea, we think that fills a big gap. I think that’s really valuable. You mentioned it before, I will say we do, and probably much better than 10 or 20 years ago, want to understand also what people after strokes priorities are for research. And there’s a number of pieces of work at the moment saying what…

what is it actually that you think would improve your life? Rather, I think you said it shouldn’t be a one-way street where I go, well, obviously it’s a walking program or it’s this, you know, because you might say, actually, that’s not what we need at all. We need something to address this other problem. And that is also really vital. And we always consider, yeah.

BIll Gasiamis (51:06)

Next.

Kate (51:16)

what people actually want when we’re thinking and designing these ideas as well.

BIll Gasiamis (51:23)

Yeah, that’s cool. what’s next for your research? What questions are you looking to answer?

Kate (51:29)

Well, I would love to continue the high walk journey. As we said, we’ve proved the concept, we’ve shown that it’s feasible and promising. The next thing for that is to do what we’d call a fully powered trial, which is a trial with more people to really show that that program is effective at preventing, at improving walking, but also is value for money, which comes back to…

what you were talking about where we have a job to do to say if the government for example invests in this kind of program that because it improves people’s lives gets them fitter and healthier actually economically it’s worth doing which is you know maybe a strange way to look at it but really helps us to then

say, we need to scale it up and offer it to a lot of people that as we spoke about before.

BIll Gasiamis (52:31)

It’s the cost benefit ratio kind of thing. They’re gonna work out. Well, if we don’t rehabilitate these people, it’s gonna cost us this much. If we do, it’ll cost us this much, which hopefully will be less. And then the burden on the community and on the public purse will be less.

Kate (52:33)

It’s a classic.

100%. And importantly, things like the improvement in people’s quality of life are very important in that calculation. So definitely seen as a real positive. If a program like High Walk, for example, can improve people’s quality of life, that is one big aspect as well about whether it’s good value for money, so to speak.

BIll Gasiamis (53:17)

And with regards to High Walk, are you actively on that campaign trail to get the funding, to get it over the line and to implement it further?

Kate (53:27)

100 % Bill, yeah, we’re trying very hard to try and get the next arm of that funded. And I will say, we’re very, very grateful to the Stroke Foundation that funded the pilot trial and really allowed us to test that idea. And without that, we wouldn’t have the ability to now be looking for bigger government grants or government funding to try and take it further. So we’ll acknowledge.

the importance of that kind of seeding money to test these early ideas. And as you said before, kind of work out if they’re promising to start to take further along the journey.

BIll Gasiamis (54:12)

Wow. I really appreciate your time, Kate. Thank you so much for the work that you do, for being interested in this topic, for making your work about other people, and for following through and kind of trying to make the next thing always happen on behalf of people you’ve never met before. I really appreciate it.

Kate (54:35)

Thanks very much, Bula, that’s very kind.

BIll Gasiamis (54:37)

that’s a wrap on another episode of the Recovery After Stroke podcast. The thing that stays with me from this conversation is that number three trials, falls after stroke affect the majority of survivors. They affect confidence, independence, and how far people are willing to push their recovery.

and the entire global evidence based on exercise-based false prevention in this population comes down to three trials. Kate’s work is part of changing that, and the high walk results show that chronic stroke survivors have more capacity than they’re typically given credit for. If you want to find Kate’s work, look for the high walk phase two trial in the journal Stroke, published in January 2026, and her systemic review on false prevention in

Clinical rehabilitation also in 2026. Both are worth your time. If today’s episode resonated with you, go back and listen to episode 257. That’s where Kate first joined me to talk about High Walk before the results were in. Hearing the two episodes together gives you the full arc of the research. Please share this episode with someone who needs it: a survivor, a carer, a physio, a family member, anyone who’s been told.

That falls after stroke are just something to manage rather than something to prevent. This research says otherwise. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/slash book. And if this show has helped you and you can support it financially at patreon.com slash recovery after stroke, please go across and have a look and see what you can do.

I’m Bill Gassiamas. Thank you for listening to Recovery After Stroke. I’ll see you in the next episode.

The post Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground appeared first on Recovery After Stroke.

Lion’s Mane Mushroom and Brain Health: What Four Clinical Trials Actually Found

Many stroke survivors and people managing cognitive decline more broadly eventually ask the same question: Is there anything beyond physiotherapy and medication that can actively support brain healing? Not symptom management. Actual repair.

Lion’s Mane mushroom (Hericium erinaceus) is one compound that has gathered genuine clinical attention. It is not a cure, the human trial evidence is still limited in scale, and it is not a replacement for the fundamentals of brain health. But the mechanism is unusual, the safety profile is consistently good, and for anyone serious about their brain, the research warrants an honest look.

Why Lion’s Mane Is Neurologically Unusual

Most supplements that claim to support brain health cannot cross the blood-brain barrier, the tightly regulated membrane that controls what enters the brain. Without crossing it, any direct effect on brain tissue is limited.

Lion’s Mane contains two families of bioactive compounds found almost nowhere else in nature. Hericenones come from the fruiting body, the visible mushroom. Erinacines come from the mycelium, the root-like underground network. Both stimulate the production of Nerve Growth Factor (NGF) and Brain-Derived Neurotrophic Factor (BDNF). These are proteins the brain uses to grow new neurons, maintain existing ones, and strengthen the connections between them.

Crucially, erinacine A, one of the key mycelium compounds, has been confirmed in preclinical studies to cross the blood-brain barrier. That is not a trivial distinction. It is one of the reasons researchers have taken this mushroom seriously.

“These are proteins your brain uses to grow new neurons, maintain existing ones, and build and strengthen the connections between them. They are, in a very real sense, your brain’s repair and maintenance crew.” — Bill Gasiamis

What the Human Clinical Trials Found

Four published human clinical trials have examined Lion’s Mane. Here is what each found:

Mori et al. (2009): In a randomised, double-blind, placebo-controlled trial, 30 older adults with mild cognitive impairment (MCI) took Lion’s Mane supplement or placebo for 16 weeks. The Lion’s Mane group showed significantly better cognitive function scores at weeks 8, 12, and 16. When supplementation stopped, scores declined again within four weeks, suggesting the effect was tied to ongoing intake, not a placebo response.

Saitsu et al. (2019): A multicenter RCT tested 12 weeks of oral Lion’s Mane in older adults. Participants in the treatment group showed significant improvement on the Mini-Mental State Examination (MMSE) compared to placebo. No adverse effects were observed.

Nagano et al. (2010): A 4-week RCT using Lion’s Mane-enriched cookies found significant reductions in self-reported depression and anxiety in women compared to placebo, suggesting effects extend beyond cognition to mood and emotional regulation, possibly via the gut-brain axis.

Docherty et al. (2023): A double-blind pilot study from Northumbria University tested 41 healthy young adults aged 18–45. After a single dose, participants performed significantly faster on the Stroop task, a measure of cognitive processing speed and flexibility. After 28 days, there was a trend toward reduced subjective stress. This was a small study, and results should be interpreted cautiously, but it suggests Lion’s Mane effects are not limited to populations already experiencing cognitive decline.

The Stroke-Specific Preclinical Data

For stroke survivors, the preclinical research adds another dimension.

In a 2014 animal study, erinacine A reduced brain infarct volume by 22–44% in ischemic stroke models (depending on dose), and significantly lowered pro-inflammatory cytokines, including IL-1β, IL-6, and TNF-α markers of the neuroinflammatory cascade that follows stroke.

A 2022 study found that erinacine A helps preserve glutamate clearance in the brain after ischemic injury. Excess glutamate is one of the key mechanisms of neuronal death after stroke, so anything that helps regulate it post-injury is clinically relevant.

These are animal studies. They do not translate directly to human outcomes. But they provide a biological rationale that supports why clinical researchers are now investigating Lion’s Mane in neurological recovery contexts.

What the Research Does Not Yet Tell Us

The limitations matter, and any honest assessment must include them.

All four human trials are relatively small, none exceeds 100 participants. We do not yet have large-scale, long-term RCTs in stroke survivor populations specifically. The optimal dose, duration, and form (fruiting body vs mycelium vs dual extract) have not been established in human trials. Direct confirmation that erinacines cross the blood-brain barrier in humans rather than in animal models does not yet exist.

Bill says it directly in the video: “The human trial data is still relatively limited in scale. We need larger, longer trials.”

Practical Questions to Raise with Your Doctor

If you are considering Lion’s Mane supplementation, the following questions are worth raising with your neurologist or GP:

Is it safe alongside my current medications? Theoretical interactions exist with anticoagulants (warfarin, aspirin, clopidogrel) and antidepressants, not confirmed in human trials, but worth disclosing. Anyone on blood thinners following a stroke should have this conversation before starting.

What form should I look for? Products should specify standardised hericenone content (fruiting body extract) or erinacine A content (mycelium extract). Products listed only as “mycelial biomass on grain” typically contain very low levels of active compounds and high levels of starch from the growth substrate. If the label does not specify active compound content, treat that as a quality flag.

Are there any trials I could join? ClinicalTrials.gov lists current recruiting studies for Hericium erinaceus and cognitive function worth checking if you are interested in contributing to the evidence base.

More information: https://recoveryafterstroke.com/book | Support the podcast: https://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.

The post Can a Mushroom Help Your Brain Heal? The Science Says Maybe appeared first on Recovery After Stroke.

Stroke Impact on Family: When the Caregiver Becomes the Patient

There is a particular kind of reckoning that happens when the person who has spent their life caring for others suddenly needs care themselves. For Kathy Cunningham, that moment arrived without warning.

Kathy worked in healthcare for years, a field built on attending to others in their most vulnerable moments. When stroke entered her life, she was confronted with something her training had never quite prepared her for: accepting help. In Episode 408 of Recovery After Stroke, Kathy sits down with her sons Sean and Paul Monahan to talk openly about the stroke’s impact on the family, not as a concept, but as a lived experience shared across three people who navigated it together.

When the Expert Becomes the Patient

Healthcare professionals develop a particular relationship with illness. They understand the biology, know the pathways, and can often anticipate the trajectory of a condition before the patient has fully processed what is happening. That knowledge is a professional asset. In a personal medical crisis, it can also become a barrier.

Kathy’s background meant she understood exactly what a stroke meant and what recovery would require. What it did not prepare her for was being on the receiving end: needing to ask, needing to wait, needing to trust others to do the things she had always done herself.

Her sons Sean and Paul were part of that support system, two adult men who stepped into a caregiving role they had never anticipated, in a household that was already carrying more than most.

A Household Navigating Stroke More Than Once

What makes Kathy’s story particularly complex is the context it unfolded in. Her household had already been touched by stroke before her own diagnosis, meaning Sean and Paul weren’t approaching caregiving as something entirely new. They were deepening an already demanding commitment.

The stroke impact on family is rarely a single event. It accumulates. Each new development shifts the balance of who does what, who needs what, and who is available to give it. For Sean and Paul, supporting their mother meant learning to hold space for her recovery while managing the weight of their own experience alongside it.

That is the part of stroke that rarely makes it into clinical documentation: the sustained psychological and logistical load that falls on the people closest to the survivor, day after day, over months and years.

The Challenge of Accepting Help

One of the most consistent patterns across stroke recovery is the difficulty survivors have in accepting help, and it is amplified, not softened, when the survivor has a background in caring for others. The implicit logic runs: I know how this works. I should be able to manage this.

Kathy speaks to this directly in the episode. The process of allowing her sons to step forward to organise, to accompany, to simply be present and available required a different kind of skill than anything her career had developed. It required recognising that accepting care is not evidence of incapacity. It is its own form of strength.

For families supporting a stroke survivor, this distinction matters. When a survivor resists help, it is not always stubbornness. Often, it is someone navigating an identity that has been fundamentally disrupted by what happened to them.

What the Family Perspective Adds

Sean and Paul’s presence in this conversation shifts something in the usual stroke recovery narrative. Most episode conversations centre on the survivor. This one deliberately includes the view from the other side, the sons who watched, worried, helped, and carried their own weight through it.

What they share is instructive for any family in a similar position. Stroke impact on family plays out differently depending on who is watching, who is helping, and who is still finding their way back to the person they knew before the stroke. Their account is not about burden. It is about recalibration, finding a new way to be a family when every role has shifted.

What Families Can Take From This Conversation

If you are supporting a stroke survivor or a survivor who has struggled with accepting help, three things stand out from this episode.

The first is that a survivor’s professional identity shapes their recovery. Someone who has spent their career as a carer may need more time and explicit permission before they can accept care themselves. Naming this directly with patience, not pressure, opens the door.

The second is that adult children carry more than they show. Sean and Paul’s willingness to speak plainly about their experience is a reminder that caregiving has an interior weight that often goes unspoken. Creating space for that conversation within a family is not weakness. It is what keeps families intact through long recoveries.

The third is that stroke impact on family is not a moment – it is a process. It evolves, shifts, and asks different things of different people at different stages. Families who move through it with honesty tend to find a stronger dynamic on the other side.

If this episode resonates with you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened explores the tools that have helped stroke survivors and their families navigate the long road back. You can find it at recoveryafterstroke.com/book.

If the show has helped you or someone in your life, you can support it financially 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.

The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan

When the family’s caregiver becomes the patient, everything changes. Kathy Cunningham and sons Sean and Paul Monahan share the unfiltered truth.

Highlights:

00:00 Kathy’s Life Before the Stroke

03:54 Family Reactions and Hospital Experience

12:31 Coping with the Aftermath

15:33 Stroke Impact on Family

21:24 Reflections on Control and Independence

28:33 Facing Mortality: A Son’s Perspective

35:19 Navigating Family Dynamics During Crisis

45:28 Understanding the Impact of Stroke on Relationships

53:21 Finding a New Normal After Recovery

01:04:58 Reflections on Healing and Future Aspirations

Transcript:

Kathy’s Life Before the Stroke

BIll Gasiamis (00:00)

Welcome to Recovery After Stroke. I’m Bill Gasciamas. Today’s episode is one that doesn’t happen often on this show. And I think that’s exactly what makes it worth your full attention.

Today I’m joined by three guests, Kather Cunningham, who is a healthcare professional and who is the person who experienced a stroke. But what makes this conversation different is who’s sitting beside her. Her two sons, Sean Monaghan and Paul Monaghan, who were there through every stage of her recovery. We talk about what stroke does to a family when the person who has always done the caring suddenly needs the care themselves.

We talk about what Sean and Paul experienced on the other side of that, what caregiving looks like when it’s your parent and it’s not a choice, and when your household has already been touched by stroke before. And we talk about the thing that Kathy found hardest, accepting help.

If you’ve been listening to this show for a while, you know that recovery rarely belongs to just one person. It belongs to everyone around them. This episode is for the families.

Before we get into it, if you’re in the middle of your own recovery or supporting someone through theirs, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this moment. You can find it at recoveryafterstroke dot com slash book.

And if this show has helped you or someone you care about, you can support it financially at patreon dot com slash recovery after stroke. Every contribution helps keep the podcast running.

BIll Gasiamis (01:30)

Cathy Cunningham, Sean Monahan and Paul Monahan, welcome to the podcast.

Kathy Cunningham, & Sean, son (01:35)

Thank you. Nice to be on. Glad to be here.

Paul (01:36)

Thanks.

BIll Gasiamis (01:38)

So Cathy, can you tell me a little bit about what life was like before the stroke?

Kathy Cunningham, & Sean, son (01:46)

Okay. So I I was working full time as a s s director of health services at a small I mean a medium private school, grades five through twelve. and I was the director of health services, a school nurse. and I had worked there for twenty five years, at Thayer Academy. and so that

Tuesday, the day of the stroke, I had worked as usual, you know, put in my eight to ten ten hours. and I don’t remember until day ten. so Sean it would be better to describe the first the he ’cause he had to manage everything on his own, w with Paul, and so he maybe he could describe what happened.

Family Reactions and Hospital Experience

BIll Gasiamis (02:41)

Yeah, Sean, tell us a little bit about perhaps how you experienced what happened to your mum.

Kathy Cunningham, & Sean, son (02:47)

So she woke me up. I was am still living here. She woke me up around two in the morning saying that she had severe esophageal pain. Yeah. She described as a nine out of ten, ten out ten. and my first instinct was to call an ambulance, but she said, No, no, no, maybe it’ll let up

You know, like another ten, fifteen minutes. And so I was a little bit like, you know, eventually, you know, I I convinced her I to let me drive her to the hospital. And it was there in the ER where she had a stroke. she was you know, had nausea and was vomiting. and when I was like helping

like you know clean up clean it up whatnot I noticed that she wasn’t like responding at all it was just glassy eyed and so I pressed the you know emergency call button because there wasn’t a doctor or nurse in at that time and there it wasn’t somebody who had seen her prior so they weren’t aware of the change at all. So I had to like very

emphatically tell them like, no, I sh this is she wasn’t like this, you know, two minutes ago. and of all the places to have a stroke, not that there is necessarily a good one. an emergency room is a not a bad one. Because they were able to get her into a CT in less than five minutes to determine whether it was a clotting stroke or a hemorrhagic stroke, which is what

BIll Gasiamis (04:31)

Yeah.

Kathy Cunningham, & Sean, son (04:42)

She ended up having.

BIll Gasiamis (04:43)

Did

you drive to the hospital? How long did that drive take? And was the ambulance not an option at that point?

Kathy Cunningham, & Sean, son (04:49)

we’ll

No, the ambulance definitely was an option. and thankfully though the hospital is close. it only took maybe ten, fifteen minutes to get there. No traffic at, you know, three in the morning. and

BIll Gasiamis (05:10)

Probably not a bad call, know, like not a bad call. Obviously what we want is an ambulance there immediately. The instinct of a stroke survivor very often and anyone going through a difficult situation, heart, you you hear about it all the time is the patient is going, no, no, she’ll be right. This is, you know, this is going to pass. It’ll be fine. We’ll get over it. And the initial reaction to call for help

Kathy Cunningham, & Sean, son (05:10)

It was too

Yeah.

BIll Gasiamis (05:38)

is the instinct and then the head gets involved and does, undoes all the good work that the instinct did to call for help because you’re thinking automatically about how much is that going to cost? Does somebody else really need an ambulance? Am I just overplaying it? Like you do all this weird stuff in your head and then what happens is, you know, somebody else has to take drastic action on your behalf because as a good son,

daughter, parent, sibling, you listen to what the person is telling you and then they convince you to go against your own instincts. It is happening all over the planet, every culture, everywhere you’ve ever heard of somebody being unwell. So now you two guys are in hospital. Paul, when is the first time you find out about it?

Paul (06:31)

Okay, Sean called me. I want to say maybe a couple hours ago. I don’t know how long you guys were at the hospital before it happened and before you figured out because ultimately she was moved from one hospital, which was kind of local, more local to where she lives and then into kind of the major city nearby for where they have obviously more care. But I was, you know,

waking up early to just get ready for work. I think Sean called me and kind of explained the situation in short order of, hey, I’m at the hospital with mom. think she’s having a stroke. They’re talking about moving her into into Boston and, you know, don’t yet know when or, you know, who’s going to move her, how this is all going to happen. I just obviously had to react to that in a kind of a dazed early, early morning.

stupor of like, what’s going on? Okay, definitely not going to work. Where do I need to be? And so it just kind of unfolded then from there. So it was pretty unsettling as of getting a phone call early in the morning and waking up to that sort of a message.

BIll Gasiamis (07:51)

Are you at home with your family and you’re attending to the regular routine that you usually have to go through and then kind of put that on pause and what did you head down to the hospital? do you manage that?

Paul (07:54)

Yeah.

Yeah,

exactly. It’s kind of the, you know, wake up my spouse and explain what’s going on. You know, quickly negotiate. can you take care of things at the house while I zoom off to go figure out and help my brother navigate this? And so ultimately, I think by the time I had put on clothes, got my car keys and was headed out the door.

Sean had told me that they were headed into Boston. And so instead of driving to the local hospital, I just met them then in the emergency room in Boston at the hospital. And so, yeah, met Sean in effectively the emergency room lobby and then walked me back into the actual room that she was on, on a bed in there.

She was still, you know, alert. would say semi aware of what was going on. Obviously, there was kind of this look of concern, but some level of comfort. was weird as it is to say on your face, mom, that you were recognized where you were, but understood it was grave, you know, felt settled that we were there and helping, you know.

Kathy Cunningham, & Sean, son (09:21)

Yeah, and I don’t

Paul (09:30)

that you had good care obviously from the hospital and that we were there to help as well. So yeah.

BIll Gasiamis (09:34)

Hmm.

Do you remember any of that part, that very early part?

Kathy Cunningham, & Sean, son (09:39)

No, I didn’t

not for the first ten days. I I didn’t I don’t the very first memory I had was in the middle of the night when I was at Beth Israel in Boston, the the major hospital, when I was being wheeled out of surgery and I had this paranoid feeling that I was being kidnapped and I I in and out of consciousness that I was aware I be became a aware of the

the familiar voices of my siblings were comforting for me and I I worked out that I like I then I was reassured that my that I wasn’t re wasn’t being kidnapped. So

BIll Gasiamis (10:23)

Do remember

the esophageal discomfort?

Kathy Cunningham, & Sean, son (10:26)

No, I don’t. And it was it’s a common a ver ver familiar pain that I’ve had since childhood and but but I had increasing severity and and associated symptoms of the nausea and vomiting. and it that that that was newer for me and but I don’t remember this particular episode at all.

BIll Gasiamis (10:51)

Sean, did you start noticing your mother dipping?

Kathy Cunningham, & Sean, son (10:57)

well, so the at first it was like a sudden just like glassy eyed no awareness. I’m not sure if it’s because of they they gave you hyper hypertonic or a salient solution basically to try to reduce the swelling. And so while she was at the you know, Beth Israel, the main hospital, there was like a little bit of improvement that, you know, gave us all hope, like, okay, she’s coming out of it. Maybe it was like, you know, healing up, you know.

BIll Gasiamis (11:13)

Mm-hmm.

Kathy Cunningham, & Sean, son (11:27)

she got treatment fast, so and but then it quickly, you know, her awareness declined and then you know we had to start talking about like what the next plans of treatment were.

BIll Gasiamis (11:47)

So how did they manage that? So your mom’s kind of declining. They’ve, they’ve discovered that she has a hemorrhage. And then what’s the next step? What do they do next?

Coping with the Aftermath

Kathy Cunningham, & Sean, son (11:55)

Yeah.

So based on well as soon as they had a spot available, they moved shirt to the ICU, the neur the neuro ICU, they had a sp specifically for neuro problems. One second. And and as I as I was as they told me later that the decision was that that they would wait a little bit and pressure once the pressure got to ten millimeters.

which I don’t know what that means. I I’m a nurse. Yeah. So the they gauge the severity by how much laterally the midline of the brain hemispheres is deviated from the center. and so the cutoff to where like, we need to take in invasive action, you know, is ten millimeters. And thankfully Paul and I and my

And our stepdad, who was in California at the time, he was able to fly back, you know, and get involved with the discussion of planet care, and that we were all on board even before the ten millimeters hit, that like if if that comes to that point, you know, we’re on board with doing what’s called a craniotomy. so

Which is pretty scary to think about and but it no it was it was I we didn’t we didn’t push back at all on the timeline. It was basically it would it was discussed and we were on board with it so that when it hit the point where it’s like we need to do it, we were all just like, okay, good to go. Well, yeah. Yeah.

BIll Gasiamis (13:29)

Was it avoided?

so to speak.

Kathy Cunningham, & Sean, son (13:55)

and and I think Paul and I and Bill were not only on board with each other, but importantly we were all on board with what we thought she would want to be done in terms of, you know, plan of a the plan of attack or treatment.

Paul (14:14)

interventions

BIll Gasiamis (14:14)

Yeah,

Paul (14:15)

and treatments and whatnot.

BIll Gasiamis (14:16)

Paul, I imagine you guys weren’t as nonchalant as your brother said. Yeah, all good.

Paul (14:22)

Yeah.

Kathy Cunningham, & Sean, son (14:22)

Yeah.

Sounds good to me, you know.

BIll Gasiamis (14:25)

I imagine it was a little bit more dramatic than that. tell me a little bit about that part, Paul. Like how do you kind of manage and deal with the knowledge that there’s a possibility that in a few moments, your mom could be missing part of a skull.

Stroke Impact on Family

Paul (14:40)

Yeah, it was definitely stressful and not necessarily nonchalant. And I think part of it too was the acute nature, obviously, of the initial stroke event in the local hospital ER to then being transferred and seeing our mother’s kind of state of health decline. There was…

because it was a hemorrhagic stroke, the primary intervention was kind of a wait and see, right? A monitor of status of inflammation and her health, all the blood pressure and whatnot. once there seemed to be some level of stability approaching where it was no longer a strong acute phase, we were kind of in a wait and see moment. So it wasn’t like a, know,

within a six hour period, we were forced with making a decision. It did take a day or two, I think, where she ultimately stabilized and it was now monitoring that midline shift and her other health measures and whatnot. So we had a little bit of breathing room, if you will, to discuss amongst the three of us about what do we think is the right call? What do we think Cathy wants?

for her interventions in terms of quality of life on the other side. We were able to have good conversation with the doctors and the care staff about what are the options, what are the implications. And I felt like they did a good job of educating us about the risks. So we could then be on that same page of, yes, we’re okay with trying to use some of the saline and other interventions in the interim to try to continue stabilizing and hopefully come out of that. But then,

We’re all also on the same page of when the call needed to be made about, hey, surgical intervention is the right thing to do. there wasn’t any hesitation there. It did, you know, come again in the middle of the night. given kind of how, how acutely all this stuff came on. Yeah. Certainly very grateful for my spouse to be able to be at home, take care of things at the house. I actually ended up staying, you know, at

my mother’s house, sleeping on the couch to just be with Sean if there were to be a call. And that did happen relative to the surgical intervention with the craniotomy where we got the call at like two in the morning or three in the morning and said, hey, we’re at the point where we were recommending we’re calling to get confirmation that we can proceed. so thankfully we didn’t have to have that discussion in a groggy state.

like the first call I’d gotten from Sean was. that there was some level of reassurance there that we felt like we were making the best decision we could.

BIll Gasiamis (17:36)

Hmm.

with regards to making the best decision you could often in these situations. And it’s great to have multiple family members in on this call is you, you get conflicting opinions between family members and often you get, what I would like to see for me. So some people feel icky about perhaps a craniotomy and go, no, no, we can’t take our mom’s

head off, know, or we have to shave her head, you know, like there’s a whole bunch of other things that come into it. People make it about themselves. And it’s not purposeful. Like they don’t do it to be nasty mean. It’s just a difficult situation to deal with. They’ve never had to deal with it before. And they’re putting, they’re trying to put themselves into the shoes of that person. And they’re not considering the nature, serious nature of the situation they find themselves in. Perhaps they’re just considering like,

superficially what it might mean if I have to interact with somebody who’s missing part of this goal. You know, so that’s very interesting. How did you guys become only was only because of proximity and who got the phone call first and who was with mom that you guys became the people who managed this with Bill or like how does

Paul (18:43)

Mm-hmm.

BIll Gasiamis (19:06)

How does that happen? How does in a big family, you two guys become the main people to drive this forward with Bill?

Kathy Cunningham, & Sean, son (19:13)

Well, so one one thing that I would suggest just generally, I’m not sure how it works in Australia, but here in Massachusetts, she didn’t have what’s known as a healthcare proxy on file. So there was no officially declared by her, like this is the person I want to be in charge of making the decisions about plans of treatment. which

Thankfully, though, the fact that the, you know, my brother and I and Bill were all on board on the same we were all in agreement, so there was no ambiguity or conflict there from the any sort of disagreement. And I think it defaults to the spouse in that case, but it was a challenge too, because he was in California at the time. So then he’s flying back, and but

one of those this isn’t directly related to that question, but on the topic of the considering like the impacts of like, it’s icky, like whatnot. But one of the concerns I had, and that I was really grateful to be able to ask the surgeon ahead of time as part of the because it wasn’t like an urgent, like we need to make this call right right now.

I was able, or we were all able to talk to the surgeon ahead of time. And one of the concerns I had was understanding what is the potential changes on the other side, you know, like is she gonna be alive, but you know, it’s the brain. The brain is very important. And the surgeon was very reassured reassuring given that the location of the bleed that the

effects would be mostly with language and potentially some changes in impulse control and regulation, emotional regulation. But I’m incredibly grateful that you know on the other side it still feels like it’s my mom. and

BIll Gasiamis (21:31)

Got it.

Reflections on Control and Independence

I love that you had time because often in these situations people don’t have time. So being able to address those concerns, it’s still valid even though I sort of suggested that it might be a bit strange that somebody is concerned about how their mom’s hair might look. But it’s still valid. And if a surgeon has the opportunity to ease your concerns, then that makes the decision much easier. I like that. Now, my spidey sensors picked up

something that I need to go towards, which was Kathy’s response when you mentioned about impulse control. Tell me a little bit about that.

Kathy Cunningham, & Sean, son (22:13)

Yeah. so i I wasn’t aware when when I finally became conscious, I realized I was slowly coming to understand that I had had some emergency, but I didn’t really understand the extent of it.

I didn’t understand that I had a s a a a hemorrhagic stroke. I didn’t even understand w what that meant. Like I just r realized I couldn’t move my right hand, I couldn’t right move my right side, but it was and then I was also had the difficulty in speaking, communicating my needs. And so I

I’m having difficulty even trying to phrase it. Yeah. but Sean noticed that I I would because I I I just don’t want to be able to say anyway, so I I But like as as an example or very early on.

the nurses and caretakers at the at the recovery, the what is it called? Recovery room. No, but the Spauldings rehab center. Yeah. We’re you know very clear on the limitations that she had and the instructions about like, you know, you cannot get out of bed. You need to remain in bed. If you need something, press the call button and wait for somebody to come help you.

BIll Gasiamis (23:40)

Rehabilitation.

Kathy Cunningham, & Sean, son (23:57)

And you were recounting having gotten yourself stuck in in the wheelchair. She had managed to because I what did you even want to get? I I would sit in bed and I would just repeatedly go like view the the clutter on the couch. I could think rationally and but I couldn’t communicate that. And I I was seeing I just over and over I’d say, well it’s easy enough that we could just get things organized.

and move this here and move that there and I was when I went to do it myself they helped me in the wheelchair and w just because I I I couldn’t navigate the space myself and even even just one sided wheeling th that it was I got stuck that I couldn’t you know stuck in in in a place b you you were

Paul (24:56)

You’ve managed to wheel yourself into a corner effectively and you’re like unable to navigate out of it.

Kathy Cunningham, & Sean, son (24:59)

Yeah. Yes. When

like they had they helped you into the wheelchair and said they said like just stay here. Yeah, well I I was just trying to sneak, you know, because of my lack of impulse control that I I just wanted to do it and and not let them find me out it because I felt like i it’s something I can just do and and I didn’t realize how quickly I I got myself stuck.

BIll Gasiamis (25:27)

and

your intention was to tidy up the couch or clean up, what was it?

Kathy Cunningham, & Sean, son (25:30)

Yes,

because it was driving me crazy. because I I I needed to have I need to have my my environment to be neat and I couldn’t hand I couldn’t stand the the how how n unsettled I I was feeling with the exterior. But

BIll Gasiamis (25:49)

It’s probably a little bit of like control, taking a little bit of control back. There’s so much you’ve given over to the hospital staff, the nurses, the rehabilitation. Everything gets given over and what you want is a little bit of control. Now I’m not a clean guy, as in like, I’m not doing the cleaning or the rearranging or the redecorating. But one of the things that I took control of was what I ate and where I ate it.

Kathy Cunningham, & Sean, son (25:53)

Well

BIll Gasiamis (26:17)

Let me tell you, if things were out of line, I didn’t eat that particular food. didn’t eat it. know, mom and dad had to bring me food. What else was I in control of? Like little things like that. You know, I used to kind of make the rules about how my rehabilitation would go and I’d have to negotiate. Cause if I wasn’t capable of doing something, they would have to convince me you’re not capable yet. But they, they realized they had a negotiator, you know, on their hands.

So that we needed to go through this whole process for me to get over the line with what they intended the day to be like. So I get it. It’s a little bit of control, a little bit of also being, yeah, autonomy, being independent again. And even if you have to wheel yourself with one arm, you have to do it, like whatever. I was in hospital, I think maybe a day or two after surgery before I went to rehab.

Paul (26:54)

you

autonomy.

BIll Gasiamis (27:15)

and they had given me laxatives because I hadn’t been to the toilet like they’d like you to go after surgery. And eventually they’ve worked and I was pressing the button and I couldn’t walk. My left side was completely offline and I couldn’t walk and I was pressing the button for the nurses to come. They wouldn’t come. And then it was like, OK, I am not letting these people clean up after me in my bed. I’m going to get to the toilet and I’m going to.

drag myself off the bed, pretty much throw myself into the wheelchair and then find a way to wheel through the door, which was closed. It was a sliding door of the toilet. And then somehow I was going to get up on the toilet, which was way higher than normal toilets for some reason. And I didn’t know how I was gonna do it, but I was gonna do it. And then I got caught halfway in the middle of the doorway. Thank God they got there on time.

Paul (27:50)

Mm.

Facing Mortality: A Son’s Perspective

You

BIll Gasiamis (28:12)

because then they helped me on the toilet, but then they refused to get out of the toilet and they wanted to be in there while I had to go and do my thing. And then I had to negotiate with them to get them out and it took some time. What seemed like an eternity, but eventually I got to have the toilet to myself and I had the nurse on the other side of the closed door waiting for me in case I needed help. So like I get it totally utterly get it, but from a

Paul (28:12)

Mm.

Yeah.

Yeah.

BIll Gasiamis (28:42)

family perspective, the kids are probably thinking, just do what they say, don’t do anything silly because…

Kathy Cunningham, & Sean, son (28:50)

Yeah, well don’t

jeopardize your your care. Like they’re telling you. But baseline, I I’m in the caregiver role that’s most comfortable for me. And so one of the things I I I’m I’m working on writing a book right now. I I and I was coming from the focus of being it being a positive, you know, like your title of your book is what made the

BIll Gasiamis (28:53)

You’re unwell! Yeah.

Paul (28:53)

You have no idea.

Kathy Cunningham, & Sean, son (29:20)

the stroke is the unexpected yeah. but I realized that I want to try to come from the different slant. Pride met my match in stroke because it was not a comfortable position for me to be in as the care needer, you know, and I had to quickly adjust

BIll Gasiamis (29:20)

the unexpected way that a stroke became the best thing that happened.

Hmm.

Mmm.

Kathy Cunningham, & Sean, son (29:43)

and go through a process of of leaning into surrendering to the fact that and I see that this was a necessary thing and I’m I’m I wanna just make sure that I make note of the fact that I see the positive benefits of the stroke. It it i I wouldn’t have made the decision to leave work. I I was I I they brought up the decision for me to retire and

And I had to accept it and but I would not have been able to make the I had was wor at Thayer Academy for twenty five years and and and even working long hours through the pandemic, et cetera. but I realized my nature by nature I I’m more comfortable with control and so

Paul (30:37)

Yeah, your default nature has always been like kind of that strong independent personality and prided yourself on being able to do things yourself and not necessarily rely or have to rely on other people even if you did get help at times. that was both a benefit in your recovery but also a source of growth and challenge for you in accepting help.

BIll Gasiamis (31:06)

Also, Paul, what’s it like to be on the other side as as a son and

I’m assuming having the first experience of getting a phone call that your mother is at risk of not being around, like, and things are pretty dire. How do you kind of, like, how do you receive that type of news and then deal with it later on, learning perhaps for the first time that your mom is not immortal?

Paul (31:40)

Yeah, yeah, it definitely, you know, definitely takes time really for that to to process that and accept that, you know, you’re you kind of get slapped in the face when you get a call like that of, you know, holy smokes, what’s going on? And, you know, so I’m so grateful that that Sean was there to deal with the initial, you know, challenges and.

And so there was less immediate stress of having to feel like I needed to jump in and control something or, you know, do something. I could just ask the question of like, okay, how do I help? Because obviously we’re dealing with something very emergent. And then, you know, those, those handful of days, those first days of just watching your, your mother’s health and

and alertness and whatnot decline slowly. was very hard, just all that uncertainty and trying to process what is a future that looks like without my mother is obviously very.

very hard to think about, let alone accept. And obviously now at this stage, even getting out of the surgery decision and then navigating the, where does she go to rehab? And the idea of transitioning from rehab to somewhere else or to home.

It’s, I don’t know, it’s, it’s, it is a hard thing to accept. but certainly obviously life changing for her and life changing for me and for Sean in terms of our relationship with her too is, is not the same as what it was, you know, growing up and, seeing her, your mom as this like strong, you know, independent person who is trying to

instill those things into us as kids and now seeing the fragility of life and engaging with her on a deeper level now, right, of what life has to offer and what it means to be alive and have a family and engage with the broader community and stuff.

BIll Gasiamis (34:16)

Hmm. My parents immigrated from Greece to Australia in the sixties and I, and I never lived with my grandparents. Never met any of my grandparents unless it wasn’t a family trip back once or twice in, in my lifetime. Maybe I met my grandparents, three of my grandparents I met twice and

And I never got to witness the generational thing that happens, know, one generation helps the other generation, et cetera. So, you know, my parents, as far as I know, have always been up and about. They’ve always been strong and steady and they’ve always, you know, steered the ship. And then they’re starting to do that old switcheroo, you know, which is now you need care from me. What are you talking about? What do you mean you need care from me? They’re in their eighties and they’re pretty…

Paul (35:09)

Yeah.

Navigating Family Dynamics During Crisis

BIll Gasiamis (35:14)

up and about there quite well, but they’ve had a few medical issues as people do as they sort of become octogenarians. And then it’s like, hmm, okay. And then I put myself in that sort of role. And so there’s my brother, but then they also had to look after me, their son who ended up in hospital with three brain hemorrhages, brain surgery, had to learn how to walk again. And I did that to them as well. And it’s kind of interesting to

Paul (35:21)

Hmm.

BIll Gasiamis (35:44)

have that experience from a patient perspective and how I, even though I recognized I was mortal, even though I went through all the emotional and mental and physical trauma, I was still a little bit less concerned about me than my parents would have been. But I’m very concerned about my parents way more than I was about myself. And

the dynamics of how relationships change are very interesting. My dad, when I got diagnosed on the first time, he’s a very soft, he’s a big giant bloke, but he’s really soft and mushy, There’s nothing. Yeah. And he collapsed at home the day he was told, your son’s in hospital and we need to go to the hospital.

Kathy Cunningham, & Sean, son (36:33)

Any America. Big old time.

BIll Gasiamis (36:44)

And he came to hospital in an ambulance, the same hospital I was in. And when my mum came to visit me, I said to her, where’s dad? And she said, well, he’s in emergency, he collapsed. And I had to go down with a brain hemorrhage to see my dad in emergency and get him like, wait, what are you doing? What’s going on here? So there’s a whole bunch of crazy things that happened that kind of make me feel like, my dad is actually a facade. All of this stuff.

that is always done has always been a facade and is put on a brave face and he’s just pushed on. And then I think about my brother being on the phone and almost badgering my wife to get information updates because he wasn’t the decision maker and he doesn’t, he lives near us, but it doesn’t live next to us and trying to get updates and information and all that kind of stuff. And then my wife kind of having to manage her experience with what’s happening. And then my brother’s experience from afar.

It’s such a weird and crazy dynamic that we never had any of that happen. Before we go to Sean, Paul, I just want to ask you, what’s it like to be a little bit further away than where Sean is, especially in the early days when, you know, things are still a little bit unstable and, you know, we’re still concerned about mom’s health.

Paul (37:53)

Yeah.

Hmm.

Yeah. Yeah, that it was very hard to, as I’ve got learned in both genetically and nurture for my mom to be, you know, independent and, wanting to, to give and care for others, not being able to be there the same way that Sean was to care for and help and advocate for her in that immediate time of need was very hard.

hard to accept, hard to lean into and be direct or just honest with myself and honest with Sean about like, hey, I can’t help X, and Z way, or I can’t be there at that time. That was just really frustrating on a personal level. But we had to rise to the occasion and

you know, talk with Sean, talk with Bill and the three of us, you know, try to figure out what made sense. Cause I, you know, I still, lived like, you know, 45, 15 minutes away. So it wasn’t like, it was just easy to just pop over to mom’s house or whatever. And so I had to make a choice of, I, you know, stay at my mom’s house? Cause I’m going to go into the hospital with Sean the next day, or do I have to go home? How do I balance work? Like it just,

It was very hard.

BIll Gasiamis (39:35)

Life goes on, right? Life doesn’t go to pause when something ridiculously sort of unhealthy happens to somebody. It continues and you have to actually go, I actually can’t go there. I have to attend to this other matter that is related to my life that is not maybe the most important thing in the world, but it’s important in the scheme of things and I’ve got to do it. Work is one of them. Attending to your own family is another thing. Sean.

Paul (39:38)

Yeah.

BIll Gasiamis (40:02)

On the other side of that, what’s it like being the closest to your mom with Bill? So perhaps you guys were able to support each other as well, but then to have to deal with all of the challenges that came when mom came home.

Kathy Cunningham, & Sean, son (40:19)

earlier. the doctors and care caregivers overall were so amazing and so professional to a f to a point where it was kind of almost frustrating because they were so factual and calm. It was it was like I I don’t know how how s how serious is this? I like I wanna see something, I want some feedback to like, you know.

BIll Gasiamis (40:42)

You wanna see them

losing their shit?

Kathy Cunningham, & Sean, son (40:45)

Yeah. They’re like talking about, you know, brain surgery like it’s like not like matter of fact, but that it’s like, you know, they’re very calmly explaining, you know, which are Yeah. Which for a neurosurgeon maybe, you know.

Paul (40:55)

It’s like reading the morning paper with a cup of coffee. just I’ll do brain servers. It’s fine.

BIll Gasiamis (41:02)

Drug survivors sometimes say, you know you hear that saying in life, it’s not brain surgery, but now it is. it is brain surgery. Okay, it is serious. Like I know what you mean.

Kathy Cunningham, & Sean, son (41:09)

Yeah. Sometimes

Paul (41:10)

Yeah, now it is.

Kathy Cunningham, & Sean, son (41:19)

Yeah. the sorry. Okay, no go ahead. in terms of being closer in the day to day assistance of my mom’s care, it was I’m proud of the fact that like Paul and I both stepped up to the plate and in a way prove you wrong.

Yeah, I used to say all the time, like, Who’s gonna take care of me? My husband is thirteen years older than me, and then my two sons, you know, I don’t have any daughters and and I thought, Who’s gonna take care of me? And they it was just such a beautiful thing that they sh proved me wrong and they they came through with so I’m such so grateful and loving and caring and kind for they were for to me and

patient. so it is it is just I have a whole new perspective on what life what really matters in life and and I realized really this you know the phrase no don’t sweat the small stuff and it’s all small stuff after all. And and such an appreciation for i it just worked out I I have Sean is not working currently but I had such

physical needs to go to many doctors appointment after the stroke and I needed depended on him to not only drive but to actually help me into the doctor’s offices and and I was so grateful that it it that he was available to help me with that. So But

Paul (43:05)

Yeah. It went from,

it went from the two of you being able to cover things for the house. Cause you know, Bill is unable to drive, uh, to then just Sean being, you know, available to help both mom and bill get to appointments and do things day to day errands or whatever. I think that transition though, uh, I thought was most interesting. talked about mom, kind of independence and stubbornness in a way, you know,

Kathy Cunningham, & Sean, son (43:16)

Yeah.

Paul (43:34)

early days where, you know, mom, you don’t remember those those details, but, you know, Sean and Bill and I were talking about your recovery progression and fortunate for you to go to Spalding because there was kind of uncertainty about where the hospital is going to just say, you know, she’s out of the acute phase time to discharge somewhere. So we’re fortunate for you to go to Spalding. And then the question was, you know, are Sean and Bill prepared to help you at home? And the two of them are feeling uneasy about like.

I’m not really sure. And we wanted to talk about putting you into like a like a step down recovery space for for yes. So you rehab and and you know, in that period of time, you became much more conscious and alert and able to understand and comprehend verbal, even if you were still working through your own speaking and communication that you eventually put your foot down and like,

Kathy Cunningham, & Sean, son (44:06)

Well part

Sell a few after the recovery. Yeah.

Paul (44:33)

I’m not sleeping in somebody else’s bed any longer. I want to go home. And that was the time in which like Sean, you know, having to navigate that transition and be a primary source, I think was a, you know, a big challenge initially, but obviously Sean, you know, stepped up, figured it out.

Kathy Cunningham, & Sean, son (44:53)

Well

Understanding the Impact of Stroke on Relationships

no, I I think we all we all Paul and Bill and I like we all did what we were able to do and with the reality of you know Paul’s working he lives elsewhere he has his own family like but he’s able to handle certain aspects as he can and

It it also like the when you mentioned Bill the the flip the flipping back and forth of the caregiver caretaker that the

It it it’s been a weird like realization of, you know, that my mom is a person. Like I I don’t even know how to describe it, but that she’s not just like the this parent, you know

BIll Gasiamis (45:46)

I know exactly what you mean. Yeah. Yeah. She,

she’s a, she’s a vulnerable human being who, you know, has, has sort of stopped being the role that she was. And now she’s being this other role and you’ve got to change the role that you were being. And now you’re going to be this role. And it’s a challenging thing to, navigate. saw that in my in-laws, particularly my father-in-law who passed away a few years ago.

who became totally dependent on his daughters to look after him because he was in a wheelchair and he couldn’t use his limbs firstly, but also because then his decision-making was not in his best interests. So that was the hardest part because they had to go against his perceived wishes and then argue with him about.

the decisions he was making, because they wanted him to be well and healthy and have a good last few years. Whereas some of his decisions were made out of frustration rather than what’s best for him. He was in his mid to late eighties and he had been disabled for many, many years and he had a lot of issues and he was over it. But the girls weren’t over it, over him.

Paul (47:11)

Mm-hmm.

BIll Gasiamis (47:12)

You know what I mean? They still wanted to make sure he was going to be around and okay, so that they can help him and interact with him. so I know what you’re saying, Sean, it’s like, how do you know, how do you in a really difficult time, you’re also navigating the complexity of relationship shifting and changing. And it’s been thrust upon you. You don’t have time to ease into it and go, you know, I’m going to now,

do one errand for my mom for the next one year and then I’m going to be doing two errands for my mom. And you’re living with another stroke survivor. Bill is another stroke survivor.

As a spouse, Cathy, becoming a stroke survivor, did you then kind of have this different understanding of what it was like for Bill to be in the hot seat

Kathy Cunningham, & Sean, son (48:05)

Yeah. I

I didn’t actually because he didn’t have any visual or physical d deficits, I he only has a a visual he lost his lost his left peripheral field of vision and and therefore it impaired his ability to drive and he just made the decision that he couldn’t drive safely. And so because I didn’t

see his deficits. I didn’t really give credence to it. Like I I I I realized how insensitive I was to his you know struggles and shifting in his capacities. but I I d my siblings called me Lazarus because they thought I was dying and

that that I I it had such a miraculous recovery from the stroke and I had many, many complications, including a D V T and a a pulmonary embolus which is a blood clot and it’s treated differently than you’re concerned for bleeding and you have to give anticoagulation for a blood clot. And so I I had that when I was in at Spaulding.

And then I had a frozen shoulder because of not being able to move my right side and and then had developed four months later seizures which Sean witnessed and when when I had a seizure. Again, Bill wasn’t home because he was visiting his daughters in California. but so

i it it the the cumulative of effect of all those things that multiplied my medical needs and and and just added to the fact that I was clearly a a miracle r recovery. but anyways, I I forget where I was gonna go with that.

BIll Gasiamis (50:16)

No,

you went well. You did really well with that. Thank you. and I was just marveling modern medicine, like its ability to deal with all of that complication, at the same time is just phenomenal. And I am in awe of all the help and the, professionalism that I received as well in all the years that I needed the, the medical system. I remember my, one of my nurses who was in the,

Paul (50:37)

you

BIll Gasiamis (50:47)

who was in my recovery area after the surgery. So I think he was looking after me in the evening. He was so on top of everything and he noticed that my temperature was really high and he was just scrambling of that entire. I get emotional thinking about it the entire night to make sure that my temperature didn’t go too high and it didn’t become further unwell. He notified everybody. He got ice packs out. He undressed me. He dressed me.

Paul (51:09)

Mm.

BIll Gasiamis (51:16)

He did all these things. I just, you know, it’s like, get, kind of get being that committed to somebody else, but then to experience it, it’s just a completely different thing. So I love that you guys have been able to get through all of the challenges that you’ve got through so far and that you’ve joined me on the podcast as a family that is brilliant.

Paul (51:31)

Mm.

you

Kathy Cunningham, & Sean, son (51:45)

Mm.

BIll Gasiamis (51:47)

because very rarely do we get to put out the broader picture of what stroke does to people. And I know that ill health, another, know, take stroke out and put in heart attack or take, in cancer or whatever. Like it’s the same impact. It’s not just the one individual that gets impacted by everybody around that individual gets impacted by it. And I think as a society, we’re unskilled.

We’re unskilled these days because we don’t live in villages to have, um, to be able to manage that because we don’t see the previous generation. Like I missed my grandparents. We don’t see the previous generation caring for their gen, their previous generation to them. And we, we, we, we missed the learning. We miss what it’s like. And then it’s a big deal. It happens all of a sudden. It’s like, Oh, old people get unwell and then they die. What do mean? Like I never saw that before.

Paul (52:26)

this.

Finding a New Normal After Recovery

Kathy Cunningham, & Sean, son (52:45)

No, it it I lived around there

and and realized that what a wonderful gift for my boys when they b when boys that we as a subunit, the me and the two boys lived with my mother and because she has several, I mean a children, that there was plenty of people in and out of her house. But I’m just so grateful for them having had the experience of living with their nanny.

and and having witnessed that and had that experience of just seeing how families can function in the larger aspect. But but I said to Sean when we were preparing for this meeting that the gift of large families is that there’s always such large numbers like 20, 30 people that had taken over the waiting room, you know.

And there was such a just a a a comfortable pool of people to keep the visitors coming and and encouraging in encouraging me, motivation and such, and but without taxing any individual too too much. Like it it it it it is I’m sure Paul and Sean felt the the lightness of of realizing that they weren’t alone with

the the the work of having to be my sole supporter and and i even Bill i it is my husband. so anyways th they can speak to that w when I had visitors that Sean gets emotional when seeing the

Paul (54:31)

you

Yeah.

Kathy Cunningham, & Sean, son (54:39)

the the excitement on my face with a familiar cousin, you know, that I I was just clearly when I was still wasn’t able to speak, but he could see the joy in my face and and he recalls that tenderly, you know. So

BIll Gasiamis (54:54)

Yeah, that’s the relief, you know, that you that you still have a recognition of things, people, etc. And yeah, it’s a real moment for a family member to go, okay, that part’s still there. I see that.

Paul (54:59)

Yeah.

Kathy Cunningham, & Sean, son (55:07)

Yeah. Yeah. It it was incredibly

Paul (55:07)

Yeah.

Kathy Cunningham, & Sean, son (55:09)

reassuring. She hadn’t spoken a single word yet at that point, since the stroke. But to see her immediately smile, well, half smile as she could at the time, when she saw, you know, her cousin walk in the door was just it it was reassuring and it was reassuring that like clearly, you know.

Even if she can’t talk, even if she’s having trouble physically and communicating like that, it she’s still in there, like, okay, you know, it’s gonna take work to try to figure out how to, you know, communicate and and collaborate with it, but it just

Paul (56:00)

I do totally, totally recognize and agree with that observation you shared, right? About the idea of, you know, with any, any event that’s significant, like a health, you know, health scare, health event where somebody, an individual is impacted, but obviously then by extension, the immediate family and any spouses and, uh, you know, it kind of has a ripple effect outward.

for everyone that it impacts. in today’s day and age, we’re partially forced through COVID and how we all adapted to more remote interactions, right? We talking to somebody on the other side of the world, right, it is a beautiful thing. It’s really cool to be able to exchange information and talk, but it is also not the same as having kind of a local community that you physically interact with.

when it comes to managing just the immediate, you know, fortunate to have, you know, my wife to be able to take care of things here, but having neighbors that we have gotten to know and gotten close with that we can also lean on them for myself and my wife to be able to say, Hey, we’re going to be out of the house. Can you take care of the dog? or, know, people stepping in to make a meal or something, just to, to alleviate that sort of burden on the rest of the family.

It’s obviously not, you we’re not the ones experiencing the medical hardship, but it does, it does help with, you know, mom’s recovery when we also are being cared for by that, that larger community.

Kathy Cunningham, & Sean, son (57:40)

Yeah.

The importance of like the carers also being cared for and taking care of themselves too. One thing very early on that I appreciated about the hospital is that you were not allowed to stay overnight. It was like even though it’s the ICU, you know, and Paul and I and Bill would have loved like would have just parked ourselves there and slept on the couch, like the the waiting lobby. No, they said

10 p.m. or 9 p.m., like you have to go home. Like, you can’t be here overnight. And it was like, you know, the recovery, physical recovery of the person having to do things that they don’t really want to do, but is good for them. Like it we couldn’t have helped nearly as much if we weren’t sleeping and eating and

Taking care of ourselves because you can’t help other people well if you’re not taking care of yourself to give yourself a baseline.

BIll Gasiamis (58:49)

It’s such a difficult thing, right? So my dad, he collapsed and then he needed to be looked after and they needed to get him right. then, you know, he had a high blood pressure episode or he had a fainting episode, you know, he couldn’t deal with the news that he heard. And that’s basically what happened. My wife, when I had brain surgery, also the week before we buried her mum and she

You can imagine I was having kind of mini seizures and different episodes before the surgery. And a week or two before the surgery, had a brain hemorrhage. And then a week or two, a week and a half after that brain hemorrhage, her mom died, we buried her. And then I had to go to surgery. So you can imagine the state of my wife trying to keep it together.

while dealing with all of the things that she has to deal with. So when it came to the surgery, it was a really hot day and she had been out and about on a walk, trying to get out of the hospital, waiting for news. And I think it was the day after when she came to visit me, she had gone on a walk and she hadn’t taken any water with her and she hadn’t been eating properly. And then I’m in bed and my wife sitting next to me,

And she’s fainting off of the chair. And I, and I had to call the nurse and say, can you take my wife to emergency, get a doctor to look after her? There’s something wrong with my wife. So I can’t walk. I’ve got a scar on my head and my wife’s fainting at the end of my bed. And, and they take her, they wheel her down, they get her into emergency, they admit her and they.

Paul (1:00:32)

Wow.

BIll Gasiamis (1:00:44)

I put her in one of the daybeds or whatever it’s called. And I turn up down there, I get one of the nurses to wheel me down and she’s connected to all the machines, a drip and everything. And I’m like, what the hell is going on? And then the surgeon, one of the surgeons who was on my, on the team that did the operation on me came past. And you know, when people just walk past and then they doubled, they do one of those. Yeah.

Paul (1:00:58)

you

Kathy Cunningham, & Sean, son (1:01:11)

Yeah, like wait, what what do you

BIll Gasiamis (1:01:14)

He almost lost his head in that double take, because he saw me in the wheelchair at the side of my wife’s bed with her all connected. And it’s exactly that thing. It’s that in the time of crisis, entire energy is going into, I want to make sure my husband’s well. I can’t go through what I went through with my mom a week after.

Paul (1:01:22)

my gosh.

Kathy Cunningham, & Sean, son (1:01:43)

Right.

Yeah.

BIll Gasiamis (1:01:44)

with my husband, right? And she just forgets about everything else. And then she becomes unwell. And now my family potentially has to now think about another person in the family who’s unwell within that period of time, like, it’s not on that should not be happening. And, and it’s one of the biggest points I tried to make with my sisters, sorry, with my sister in laws and my wife when they were trying to care for their dad.

because the three of them are exactly the same. And I was saying to them, guys, your dad is unwell. We cannot have four people unwell at the same time in the family. You all need to look after yourselves. But caregivers are neglected by society in general in that underappreciated. They’re missed in the whole scheme of things because clearly

Paul (1:02:22)

Ha

Kathy Cunningham, & Sean, son (1:02:32)

Underappreciated

BIll Gasiamis (1:02:40)

At that time, they’re not the injured person, the unwell person. They might become that later, but they’re not at that time. So they get overlooked.

Kathy Cunningham, & Sean, son (1:02:50)

I want to give a shout out to Nadia Paul’s wife who solved the problem of communication, streamlining communication. And she had start a caring village, which is an online p portal for communicating about patients. And and it was just tr truly a gift that for for

BIll Gasiamis (1:02:50)

Yeah.

Paul (1:03:08)

platform.

Kathy Cunningham, & Sean, son (1:03:17)

probably for best for pawn Paul and Sean, that it would be communicating daily updates and photos and videos and such that people could individually log in and get their own update, you know, at their own convenient time. So they weren’t having to be taxed, also trying to repeat the same story over and over and over again. So that helped.

BIll Gasiamis (1:03:42)

That’s very important. how’s, as we come to the end and wrap up, how has sort of things settled now, Paul, for you?

Reflections on Healing and Future Aspirations

Paul (1:03:52)

Yeah, yeah, things, I mean, right with with my mom’s, you know, recovery back to, you know, her independence, being able to drive and, and obviously, it was a stressful time of navigating of, you know, is she going to go back to work or not? That was a that was a hard kind of period of, of will she doesn’t make sense, you know, what’s the right decision and, and, you know, so we’ve we’ve fell into a new

a new normal, new kind of baseline of back to work. I’m not worried about getting a phone call at two in the morning again, you know, because there’s always that kind of lingering anxiety of what’s going to happen next coming out of that kind of medical crisis. so, you know, we have our new way of kind of managing things like I can help out.

you know, even though I live a little bit away, we’re pretty regular making sure we’re doing video calls and, catching up and, and, you know, providing any additional support to mom and Sean and Bill that I can, without, you know, totally jeopardizing and throwing my life into this array, right. Of, my responsibilities. So, it’s, it is definitely a relief to be back to a, what feels like a normal,

kind of cadence of life and relationship with my mom and my brother and friends and family. So it’s definitely a relief.

BIll Gasiamis (1:05:27)

And Sean, what’s it like for you now?

Kathy Cunningham, & Sean, son (1:05:31)

it has definitely it’s not totally gone away, the like anxiety about, you know, if I if I sent like give her a phone call and she doesn’t pick up and doesn’t pick up on repeated ones, my mind still does go to like, gosh, is is she okay? Like, because of the, you know, numerous instances of that with the seeing her have the seizure too and

whatnot. But with time it’s gotten much less severe. That anxiety crops up much less and less. And it’s been one a big challenge for me is trying to figure out moving forward for myself what the

For the past several years it had been like my purpose was to help her recover. And as she’s, you know, regained so much, you know, she’s not back. It it it’s been tough to figure out now that we’re well past the acute stage, like

Where does the flip-flopping go from here? Not the flip-flopping, but the yeah.

BIll Gasiamis (1:06:52)

Yeah. Switcheroo.

Yeah. Back to your purpose, meaning you’re doing you. Yeah. That’s a really good thing to ponder and work out over the next few weeks, months, years. Definitely you need to do that. That’s important that your identity is not, sort of commingled with somebody else’s identity because of a role that you played once that you may have to play again, but

Kathy Cunningham, & Sean, son (1:07:00)

Yeah.

BIll Gasiamis (1:07:21)

temporary role that you played once. Now you’ve got to get back to you for sure. And Cathy, where are you with the book? When can we expect it?

Kathy Cunningham, & Sean, son (1:07:37)

so I’m about ninety percent physically recovered. and cognitively and I I find that my language difficulties is and my energy level is I still need a three hour nap midday each day. and I met with the neurologist to try to get him to agree to

For me to reduce my Kepra, which is an anti-seizure med that I have determined is probably contributing to my fatigue. But so I I wanna give myself a deadline. You know, I wanna say six to twelve months from this day, you know, that I would have that that book completed. And and so just what I wanna leave it as that the

Potential of returning to work was such a an important motivation for me that I really pushed forward to that. I had to have neuropsychaval. I it it did have three three ones, and I finally passed the third one. and I thought I would be returning to work. but I I have come to accept that that it wasn’t the time for me to return to that

pretty stressful even even it takes me longer to get ready in the morning. but but I get easily overloaded and I have seen that though I had less hard lessons to learn and there were t certain times that I really didn’t like what I was going through, but but I tried to always choose gratitude.

that I s would start each day with with you know the reflecting on positive things that Sean would be available and that that I was feeling good in the certain ways that I was feeling. And and it it really set the tone for the day that I would focus on the positive things that was in my life.

But it it’s been a journey and I I’m happy to say that I’m I I’m almost there. But but I don’t I don’t see it as you know like a linear not a linear process, but but that it’s life is a journey and there’s lessons to learn.

BIll Gasiamis (1:10:21)

Well, everybody, thank you so much for joining me on the podcast. It’s been a pleasure getting to know you and hear your stories and your different version of how you experienced Kathy’s stroke. And I wish you all well in your journey from here on.

Kathy Cunningham, & Sean, son (1:10:38)

Thank you. Thank you very much for having us.

Paul (1:10:39)

Thank you, Bill.

BIll Gasiamis (1:10:41)

That was Kathy Cunningham, Sean Monahan, and Paul Monahan. And a genuine thank you to all three for joining me on the podcast today. What stays with me from this conversation is the idea that accepting help is not a passive thing. For Kathy, someone whose entire professional identity was built on giving care, learning to receive it was one of the hardest parts of recovery.

Sean and Paul also showed that caregiving, real caregiving, asks something of you that doesn’t go away when the crisis does. If this podcast brought something up for you, share it with someone who needs to hear it.

You don’t have to leave a review, just send it to one person. That’s the thing that keeps this show in front of the people who need it most. My book, The Unexpected Way That a Stroke Became, the best thing that happened, is at recoveryafterstroke.com/book. If you’re in the middle of your own recovery or helping someone through theirs, it was written for you. And if this show has helped you, you can support it financially at Patreon.

dot com slash recovery after stroke. I’m Bill Gessiamas. Thank you for listening to Recovery After Stroke. I’ll see you in the next episode.

The post The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan appeared first on Recovery After Stroke.