Recovery After Stroke

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

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

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

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

“I was dead, honestly.”

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

What Are Aphasia and Apraxia After Stroke?

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

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

“In my brain, I’m fluent.”

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

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

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

“It’s very frustrating. But it’s me

Living With Aphasia: The Parts Nobody Sees

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

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

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

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

“Talking is therapy.”

Recovery Beyond the Plateau

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

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

Her license plate reads DETERMINED.

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

What Michelle’s Story Offers Other Survivors

Three things stand out from this conversation.

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

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

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

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

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

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

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

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

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

Links:

MichelleClemens.com

Recoveryafterstroke.com/momentum

Recoveryafterstroke.com/book

Patreon.com/recoveryafterstroke

Highlights:

00:00 Introduction to Aphasia and Apraxia After Stroke

03:27 The Day of the Stroke

12:32 Life After the Stroke and Writing a Book

15:21 The Journey of Communication and Aphasia

23:37 The Role of Family and Community Support

28:09 Navigating Relationships and Social Connections

31:01 Therapeutic Approaches and Personal Growth

35:43 The Power of Storytelling and Future Aspirations

46:30 The Journey of Recovery

Transcript:

Introduction to Aphasia Aphasia and Apraxia After Stroke

Michelle Lee Clemens (00:00)

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

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

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

Bill Gasiamis (00:33)

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

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

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

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

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

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

Here’s my conversation with Michelle Lee Clemens.

BIll Gasiamis (02:39)

Michelle Clemens, welcome to the podcast.

Michelle Lee Clemens (02:41)

Thank you.

BIll Gasiamis (02:44)

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

Michelle Lee Clemens (02:49)

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

The Day of the Stroke

My reporter life was really weird, random.

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

and my life was sweet and yeah.

BIll Gasiamis (03:35)

Excellent. Busy full life.

Michelle Lee Clemens (03:38)

Yes, definitely. I I

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

BIll Gasiamis (04:08)

You haven’t pierced now.

Michelle Lee Clemens (04:10)

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

BIll Gasiamis (04:27)

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

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

Michelle Lee Clemens (04:38)

Twenty two.

BIll Gasiamis (04:39)

And how old are you now?

Michelle Lee Clemens (04:41)

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

BIll Gasiamis (04:49)

25,

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

Michelle Lee Clemens (04:57)

I know, right?

BIll Gasiamis (04:59)

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

Michelle Lee Clemens (05:05)

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

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

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

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

BIll Gasiamis (06:12)

All right, is that rheumatoid arthritis?

Michelle Lee Clemens (06:16)

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

The doctor took twenty three vials of blood.

BIll Gasiamis (06:38)

Wow.

Michelle Lee Clemens (06:39)

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

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

BIll Gasiamis (07:30)

2, 1

Michelle Lee Clemens (07:31)

Two shots in my eyeballs. Yes.

BIll Gasiamis (07:34)

injections

which you don’t like.

Michelle Lee Clemens (07:39)

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

BIll Gasiamis (07:44)

to do with those shots?

Michelle Lee Clemens (07:46)

I was

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

BIll Gasiamis (07:48)

Uh-huh.

Michelle Lee Clemens (08:12)

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

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

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

Late I had my brand new medicine.

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

We drove to the ER in Green Bay and

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

BIll Gasiamis (09:49)

gosh, he thought you had an anxiety attack.

Michelle Lee Clemens (09:51)

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

to a great possible for my care. I I have

I no sorry.

was bald. I was I mean I

BIll Gasiamis (10:34)

You had,

you had brain surgery.

Michelle Lee Clemens (10:37)

Yes. Brain surgery. three times. I was

BIll Gasiamis (10:43)

Did they remove your skull? Yep.

Michelle Lee Clemens (10:47)

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

and the doctor said

really don’t know. And my dad said

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

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

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

BIll Gasiamis (12:12)

Hmm.

Life After the Stroke and Writing a Book

Michelle Lee Clemens (12:32)

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

story is so powerful. and I

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

BIll Gasiamis (13:04)

Determined

Well done.

Ha

Great

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

Michelle Lee Clemens (13:17)

I

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

Okay. Maybe a car accident.

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

idea and later

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

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

BIll Gasiamis (14:38)

So you also couldn’t see.

Messing with it.

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

Michelle Lee Clemens (14:53)

Yes, yes.

Yeah.

Exactly.

BIll Gasiamis (15:16)

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

The Journey of Communication and Aphasia

Michelle Lee Clemens (15:21)

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

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

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

BIll Gasiamis (16:10)

Hmm.

Michelle Lee Clemens (16:16)

Okay.

Okay, there it is.

Sorry.

BIll Gasiamis (16:21)

No, it’s okay. Take your time.

Michelle Lee Clemens (16:22)

Okay.

My bad.

I’m really sorry.

It’s a different strip. There it is.

Okay.

Not quite.

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

BIll Gasiamis (16:34)

No stress about all good.

Michelle Lee Clemens (16:57)

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

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

Not in jumbling, but I mean it’s it’s

BIll Gasiamis (17:24)

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

Michelle Lee Clemens (17:26)

Yes, right here. Right here. Sorry. Right

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

BIll Gasiamis (17:43)

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

Michelle Lee Clemens (17:49)

Yes, yes.

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

BIll Gasiamis (18:06)

you

Hmm.

Michelle Lee Clemens (18:14)

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

BIll Gasiamis (18:30)

Hmm.

So

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

Michelle Lee Clemens (18:46)

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

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

A author.

BIll Gasiamis (19:42)

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

Michelle Lee Clemens (19:47)

Yeah, I

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

BIll Gasiamis (20:03)

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

Michelle Lee Clemens (20:07)

Well

Huh.

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

BIll Gasiamis (20:21)

it’s

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

Michelle Lee Clemens (20:24)

Exactly.

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

And it’s very awesome, huh?

BIll Gasiamis (20:39)

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

Michelle Lee Clemens (20:47)

Yes, ex my

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

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

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

BIll Gasiamis (21:44)

doesn’t make a lot of money.

Yep, I believe that.

Michelle Lee Clemens (21:52)

Yes.

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

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

BIll Gasiamis (22:42)

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

Michelle Lee Clemens (22:45)

Exactly. And then and

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

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

BIll Gasiamis (23:13)

a lot of well wishes.

Mm-hmm.

Mm-hmm.

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

The Role of Family and Community Support

Michelle Lee Clemens (23:37)

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

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

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

BIll Gasiamis (24:13)

Yeah.

Move on,

So therapy is,

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

Michelle Lee Clemens (24:37)

Yeah!

Well yes.

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

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

BIll Gasiamis (25:00)

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

Michelle Lee Clemens (25:22)

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

BIll Gasiamis (25:32)

but weird.

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

Michelle Lee Clemens (25:37)

Exactly. Exactly. And

Every.

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

BIll Gasiamis (26:16)

I see.

Michelle Lee Clemens (26:17)

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

BIll Gasiamis (26:34)

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

Michelle Lee Clemens (26:46)

I really I’m grateful.

BIll Gasiamis (26:50)

What are you grateful for specifically?

Michelle Lee Clemens (26:54)

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

I

My God is amazing.

BIll Gasiamis (27:05)

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

Michelle Lee Clemens (27:15)

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

BIll Gasiamis (27:30)

friends.

Michelle Lee Clemens (27:43)

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

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

Navigating Relationships and Social Connections

BIll Gasiamis (28:10)

Is it? Is.

Michelle Lee Clemens (28:16)

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

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

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

BIll Gasiamis (28:45)

Yeah, so aphasia is a barrier, a barrier.

Yeah. So

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

Michelle Lee Clemens (29:01)

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

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

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

BIll Gasiamis (29:42)

three years ago.

You broke up in Sydney, Australia?

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

Michelle Lee Clemens (30:07)

Yes. Yeah.

Yes. Yep. Yeah. Yeah. I I

BIll Gasiamis (30:18)

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

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

Michelle Lee Clemens (30:26)

Love it. I love it. I mean, I

BIll Gasiamis (30:30)

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

Michelle Lee Clemens (30:31)

Okay.

You’re right. Exactly.

BIll Gasiamis (30:46)

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

Therapeutic Approaches and Personal Growth

Michelle Lee Clemens (30:49)

Yeah.

Yeah.

Nice. Yeah.

Right.

BIll Gasiamis (31:16)

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

Michelle Lee Clemens (31:28)

yeah.

BIll Gasiamis (31:45)

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

Michelle Lee Clemens (31:49)

Senate.

Nope. No.

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

BIll Gasiamis (32:04)

A lot of jacking it.

Wow. Well,

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

Michelle Lee Clemens (32:18)

Thank you. Thank you.

BIll Gasiamis (32:36)

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

Michelle Lee Clemens (33:06)

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

BIll Gasiamis (33:09)

Thank

Michelle Lee Clemens (33:34)

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

BIll Gasiamis (33:39)

Yeah. And it sounds

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

Michelle Lee Clemens (33:48)

Yeah.

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

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

BIll Gasiamis (34:29)

countries.

Michelle Lee Clemens (34:47)

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

BIll Gasiamis (35:12)

therapy.

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

The Power of Storytelling and Future Aspirations

Michelle Lee Clemens (35:31)

Exactly.

Yes,

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

BIll Gasiamis (36:07)

rest, the rest and recovery.

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

Michelle Lee Clemens (36:16)

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

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

BIll Gasiamis (37:01)

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

Michelle Lee Clemens (37:14)

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

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

BIll Gasiamis (37:59)

Okay.

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

Michelle Lee Clemens (38:14)

yeah.

No.

It

no, I mean I I mean

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

BIll Gasiamis (38:49)

Hahaha

Michelle Lee Clemens (38:56)

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

BIll Gasiamis (39:03)

Yeah, so your hand

is still improving after nine years.

Michelle Lee Clemens (39:08)

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

BIll Gasiamis (39:10)

and your speech too.

They say that you’ve hit

the plateau, you’re not progressing.

Michelle Lee Clemens (39:35)

Yes,

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

BIll Gasiamis (39:44)

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

Michelle Lee Clemens (40:11)

Yes. And

BIll Gasiamis (40:13)

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

Michelle Lee Clemens (40:17)

Yeah,

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

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

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

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

BIll Gasiamis (41:23)

Right.

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

Michelle Lee Clemens (41:42)

Yeah.

BIll Gasiamis (42:11)

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

Michelle Lee Clemens (42:26)

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

BIll Gasiamis (42:28)

Okay.

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

Michelle Lee Clemens (42:39)

Sorry.

Yes.

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

BIll Gasiamis (43:11)

So many years.

Michelle Lee Clemens (43:13)

Yes, many years.

BIll Gasiamis (43:15)

And what’s the book about?

Michelle Lee Clemens (43:17)

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

BIll Gasiamis (43:45)

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

Michelle Lee Clemens (43:45)

I mean, yeah.

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

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

BIll Gasiamis (44:56)

Yeah.

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

Michelle Lee Clemens (45:08)

Yes.

Yeah, definitely.

Thank you.

MichelleClemens.com

BIll Gasiamis (45:28)

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

Michelle Lee Clemens (45:33)

Yes.

BIll Gasiamis (45:35)

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

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

Michelle Lee Clemens (46:11)

Thank you.

BIll Gasiamis (46:12)

And congratulations on getting back to four jobs.

Michelle Lee Clemens (46:15)

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

BIll Gasiamis (46:23)

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

Michelle Lee Clemens (46:25)

Thank you.

Thank you. Have a good day.

The Journey of Recovery

Bill Gasiamis (46:30)

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

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

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

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

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



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

Single Parent Stroke Recovery: How Jeff Manuel Is Rebuilding His Life for His Kids

Jeff Manuel was working two jobs to provide for his two teenage kids – a full-time role in electrical sales plus evening grocery-delivery shifts – when a stroke at 52 changed everything about how he could show up for them.

Four years later, he’s not back to where he was. He’s become someone different, and by his own account, someone he likes better.

A Normal Saturday Morning, Then Everything Changed

Jeff’s stroke happened on a Saturday in March 2022, but the warning signs started the night before, on his last work shift.

The next morning he made coffee, showered, and drove to drop off his kids’ things at their mother’s house in West Kelowna. When she opened the door, she immediately knew something was wrong – his face had visibly dropped.

A local clinic ran a squeeze test that came back fine and prescribed inhalers for what they assumed was a breathing issue. It wasn’t until Jeff tried to pick up oranges with his left hand an hour later, and couldn’t, that they went to the hospital. A CT scan confirmed he’d had a stroke. He couldn’t move his arm or his leg.

Raising Two Teenagers From a Hospital Bed

Single parent stroke recovery comes with a particular kind of weight: the practical question of who looks after your kids while you can’t. Jeff and his ex-wife were separated but living close by, and when he was hospitalized for three months, she and their children – a boy and a girl, both thirteen at the time – stepped in to support him.

She’s been doing a lot for me, and I really appreciate it.

What could have been an awkward or strained dynamic instead became a stronger friendship than the one they’d had before the stroke. Jeff is candid about why the timing mattered to him:

Thank goodness it happened when I was only fifty-two and not seventy-eight, when they’d got their families all grown up and their own worries. I didn’t want to be a worry to their father.

His kids are now nearing graduation, and he stays in touch by text and phone, even though he doesn’t get to see them as often as he’d like.

Two Years Learning to Live Again

After hospital, Jeff moved into a residential rehabilitation program called Connect Communities, where he spent two years relearning basic independence – from walking to cooking to managing a wheelchair-accessible home.

Progress wasn’t linear: partway through, his wheelchair tire caught on a mat and led to a fall that required a hip replacement, adding more recovery time on top of the stroke rehab.

The program used occupational therapy milestones to unlock privileges – once he could complete a task within a set time, he earned the ability to grocery shop and cook for himself, working up to preparing a meal every night.

That system became his bridge from full-time care toward the assisted living arrangement he’s in now, which he describes less as being stuck and more as “graduating” toward independent living.

Managing Pain That Doesn’t Go Away

Chronic pain has been one of the harder, more persistent parts of Jeff’s recovery – constant pain and tension on his left side, in his shoulder in particular.

After four years of prescribed medication, Jeff made his own decision to stop his pharmaceutical pain pills and manage his pain with medicinal marijuana gummies instead, taken a few times a day.

He credits them with helping not just with pain, but with sleep and digestion too. This is Jeff’s personal experience and decision, made under his own judgment about his body after years of living with it post-stroke – not a treatment recommendation, and as always, any change to medication should be made in consultation with your own medical team.

A Rebirth, Not Just a Recovery

What comes through most clearly in Jeff’s story isn’t the physical rehabilitation – it’s the internal shift alongside it.

He describes the last ten years before his stroke as a period of grief he hadn’t fully processed, following the deaths of his mother and sister, and a tendency to put himself first that he says didn’t serve his family. The stroke, paradoxically, became the catalyst for the opposite:

I’d like myself again because I know I’m a good person.

He talks about his recovery in openly spiritual terms – leaning on his mother’s belief that “everything happens for a reason,” and describing his body’s limitations as temporary: “This is only part of your meat suit.” He’s quick to add that this reframing isn’t about denying the hard days. It’s about noticing small, cumulative wins:

Sometimes you’re not aware of what’s happening, and then you think about it – I couldn’t do that yesterday, now I can.

What Keeps Him Going

Jeff found Recovery After Stroke the same way many listeners do – searching for answers in a hospital bed, trying to understand what had just happened to him.

I’ve seen so many other people going through it. It really did help me.

Now, four years on, he’s paying that forward by sharing his own story, pain and all, with the same honesty he found helpful when he needed it most.

If Jeff’s story resonates with your own recovery – or your own path back to being fully present for the people who depend on you – Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, digs deeper into this kind of transformation: recoveryafterstroke.com/book.

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

Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again (Interview)

A single dad’s 4-year journey from hospital to independence – raising his kids, relearning to cook, and rebuilding who he is.

Highlights:

00:00 Jeff’s Journey: Single Parent Stroke Recovery
04:01 The Day of the Stroke
06:42 Personal Transformation Post-Stroke
09:03 Rewiring the Brain and Recovery
11:04 Support During Recovery
13:32 Mindset and Spiritual Growth
15:25 Challenges of Recovery
18:52 Personal Transformation and Reflection
20:24 Daily Life in Assisted Living
24:01 Pain Management and Coping Strategies
26:28 Future Aspirations and Independence
28:13 Finding Community and Sharing Stories

Transcript:

Jeff’s Journey: Single Parent Stroke Recovery

Jeff Manuel (00:00)
Once you get over what has happened, you become a better person.

I like myself again because I know I’m a good person.

if it takes another four or five years to walk again, it takes that.

But if I can get as many tools into my tool chest, I can use later in life.

Bill Gasiamis (00:18)
Welcome back Recovery After Stroke. I’m Bill Gassiamis. My guest today is Jeff Manuel, a single father of two teenagers who was working two jobs full time in electrical sales plus evening grocery delivery when he had a stroke at 52 that left him with left-side paralysis. Jeff describes his stroke as involving a clot and possibly a bleed as well. The exact clinical picture is something we talked through together in the episode.

We get into what it’s like raising teenagers through three months in hospital and two years in residential rehab, and how his relationship with his ex-wife has changed since the stroke, how he’s learned to cook again with one hand and the pain management approach he’s landed for himself after four years of recovery. Quick note before we dive in, if you’re feeling stuck in your own recovery, I now offer one-on-one coaching for stroke survivors.

It’s not therapy or medical treatment, it’s lived experience support, structure, accountability, and someone who’s actually been where you are, having survived three strokes myself. I only work with a small number of people at a time, so it stays meaningful. You can apply at recoveryafterstroke.com/momentum. If Jeff’s story resonated with you, I also wrote a book about my own experience called The Unexpected Way.

That a stroke became the best thing that happened, it is available at recoveryafterstroke.com/book. And if this show has helped you, you can support it directly at patreon.com/recoveryafterstroke. Here’s my conversation with Jeff.

BIll Gasiamis (01:58)
Jeff Manuel. Welcome to the podcast.

Jeff Manuel (02:01)
Thanks for having me.

BIll Gasiamis (02:01)
Tell me a little bit about what life was like before stroke. What were your daily tasks? What kind of things did you get up to?

Jeff Manuel (02:10)
at the time I had two jobs. I had full time journal day and then after after the day job I would go and

And I was I was before I was in a loop to try to catch up and

Provide for my family.

BIll Gasiamis (02:22)
What kind of jobs did you do?

Jeff Manuel (02:23)
I was my last job was in sales, electrical sales.

And I used to I would pick groceries for customers that were just driving by and picking up the groceries. So I’d pick mostly the the dry goods and have it ready for when they eat when they were ready to pick up the groceries.

BIll Gasiamis (02:41)
Was that the after hours job?

Jeff Manuel (02:42)
Pardon me?

BIll Gasiamis (02:42)
Was that the after hours task?

Jeff Manuel (02:45)
Yes.

BIll Gasiamis (02:45)
And how many hours a a week would a day would you say you were working then?

Jeff Manuel (02:48)
I’d be I’d probably have four four four shifts a week.

Sometimes less.

BIll Gasiamis (02:53)
And on the day of one of your shifts.

Jeff Manuel (02:54)
It was manageable

at the time.

BIll Gasiamis (02:56)
It was manageable.

Jeff Manuel (02:57)
Yes.

BIll Gasiamis (02:57)
And on the day of one of the shifts that you went to your regular job and then you did one of those shifts, how many hours would you say that?

Jeff Manuel (03:06)
Five hours.

I believe I worked the five hours that was on my stroke happened on a Saturday. This was a Friday night. So I believe it was five hours. Cause I was started it at five and I finished at ten.

BIll Gasiamis (03:07)
The added

So with your full time job, the regular job, that would be a normal eight hour day and then you would do an additional five hours?

Jeff Manuel (03:30)
Yes.

BIll Gasiamis (03:30)
Okay. And w other than work, what else did you get up to?

Jeff Manuel (03:37)
I’m a single father of two kids.

So as much time as I could spend with him I spent with them even though we were not living in the same house.

BIll Gasiamis (03:45)
Understood. How old were the kids?

Jeff Manuel (03:46)
Thirteen.

BIll Gasiamis (03:47)
Two boys, two girls.

Jeff Manuel (03:49)
boy to give us

BIll Gasiamis (03:50)
Sorry, Jeff, what was that?

Jeff Manuel (03:51)
Boy and

a girl, I’m sorry.

BIll Gasiamis (03:52)
A a boy and a girl.

And you were working the extra hours to cover everybody and make sure they had everything they needed.

Jeff Manuel (04:00)
Yes.

The Day of the Stroke

BIll Gasiamis (04:01)
And what what happened on the day of the stroke, Jeff?

Jeff Manuel (04:05)
Well, I woke up Saturday morning, everything was fine.

Put on the coffee machine. Went and got a quick shower.

Packed up my clothes cause I was going to to their house ’cause they lived with their mother in West Kelowna. And I was living in Peachland at the time. So I drove on the highway, popped into McDonald’s, cup of coffee, couple of sandwiches, and then they were just two minute drive away. knock on a door.

She opens the door and she says, What the heck happened to you? I said, What do you mean?

She said your face is on the ground. My whole left side, I guess, just collapsed.

So then she says we’re going to the clinic.

Is it okay? So go over does a squeeze test. I mean both hands, fine.

And I was walking and talking and doing everything. Like nothing happened yet.

I said the only the only issue I had was a little bit of breathing problems a couple of months previous.

So we prescribe some inhalers and see if that helps.

Mm got the inhalers, tried out an hour later. Didn’t do anything for me.

Then I tried picking I had a shift at twelve o’clock and this was probably about eleven. And I went into the kitchen and tried picking up oranges with my left hand and I couldn’t grab it and put it in the bag and she said, We’re going to the hospital. So, okay. Then I was getting worried. So I didn’t know what it was.

BIll Gasiamis (05:29)
And and then you spent some time in hospital doing tests, were you?

Jeff Manuel (05:32)
Heard me?

BIll Gasiamis (05:32)
Then you spent some time at hospital, were they testing you?

Jeff Manuel (05:34)
Interested C D scan.

Then he comes down and tells me that Mr. Manuel you had a stroke.

Said okay. And then I still can’t comprehend what that actually meant. But I knew it was something wrong. And it wasn’t till the next day that I couldn’t move my arm or my leg.

BIll Gasiamis (05:52)
Mm-hmm. And how long ago was that, Jeff?

Jeff Manuel (05:56)
That was in

Right of twenty twenty two.

BIll Gasiamis (05:59)
March of twenty twenty two.

Jeff Manuel (06:01)
Yes.

BIll Gasiamis (06:01)
Got it. And you seem to be quite still significantly emotionally upset about it. Do you find that you’re have a a few challenges about dealing with your emotions?

Jeff Manuel (06:11)
that’s cool.

I’m sorry, Bible is not upset. It’s happiness.

BIll Gasiamis (06:18)
It’s happiness.

Jeff Manuel (06:19)
I’ve turned a big corner this year And I’m happy I’m happy where I am I’m happy for who I am

This is just temporary. I know that. And I’ve learned to live with it for four years and it’s okay. I’m good.

BIll Gasiamis (06:34)
Lovely, man. So who are you now? Who are you now that you’re happy with who has turned the corner?

Personal Transformation Post-Stroke

Jeff Manuel (06:42)
I’m I’m more of myself a long time ago with the name. In the last ten years it’s

It’s just listening to other people having a broadcast and internalizing it and using it for the good.

And trying to help people as much as I can. Even it just means a smile and hey you’re doing a great job. That means the world to people.

And for some people they can’t say it, so I’d say it for them.

BIll Gasiamis (07:02)
Mm.

So the the the guy from ten years ago wasn’t happy. What was wrong with that guy? Like what is it that he wasn’t doing that wasn’t serving you?

Jeff Manuel (07:15)
I wasn’t paying attention to what I had to pay attention to my my wife and kids.

I was up north and in the North Territories, which is Canada’s Arctic, for twelve years. Awesome years. Beautiful people.

BIll Gasiamis (07:32)
And what were you doing there? What was the task?

Jeff Manuel (07:35)
Doing a couple of different jobs. My last job was I was assistant manager of like a Costco.

But it was a a locally owned Inn Valley store, so

BIll Gasiamis (07:42)
I went

Jeff Manuel (07:46)
When my boss would be out of town I would have to look after the stores and transfer to other parts of the Arctic.

BIll Gasiamis (07:46)
And were you away from your family at that time?

Did that have you away from your family?

Jeff Manuel (07:55)
No, my family lived right in the same community, so

BIll Gasiamis (07:57)
Uh-huh. And what you you weren’t satisfied with the way you were going about life? What was the difference between now and then? Because you’re quite co comfortable suggesting that there’s been a shift, a change? Were how how were you not

Jeff Manuel (08:13)
I was

drinking way too much.

And then along with grief.

BIll Gasiamis (08:18)
What was the grief in relation to?

Jeff Manuel (08:19)
my mother and my sister had passed away from cancer. But like pretty close to tw twenty years ago now. So and recently it’s been my brother. So it’s been I’ve been thinking a lot about that.

BIll Gasiamis (08:32)
And were you using alcohol to cope before the stroke?

Jeff Manuel (08:34)
Yes.

BIll Gasiamis (08:35)
And did that mess up your relationships?

Jeff Manuel (08:36)
Not necessarily.

BIll Gasiamis (08:37)
How how was it that you weren’t doing the right thing by your family?

Jeff Manuel (08:41)
I’m just thinking more about myself than others.

BIll Gasiamis (08:44)
Putting yourself first.

Jeff Manuel (08:46)
Yes.

BIll Gasiamis (08:46)
Mm-hmm. Got it. And then the stroke happened and how did that change everything? Because the stroke made you unwell. It put you in hospital. But how did that shift the way that you behaved and the the way you went about life?

Rewiring the Brain and Recovery

Jeff Manuel (09:03)
Well, in this is my fourth year, so this year I know that my brain is rewiring itself because I can see minuscule changes every single day.

And sometimes you’re not aware of what what what’s happening and well then you think about it and I couldn’t do that yesterday, now I can do it.

BIll Gasiamis (09:24)
understood. And hello

Jeff Manuel (09:26)
And it’s a it’s a

it’s it’s a positive positive thing that happens to you every single day.

BIll Gasiamis (09:32)
Got it, I appreciate that. So you’re seeing small significant changes that are adding up and you’re getting results from that. And it’s been for years now.

Jeff Manuel (09:40)
Yes. I’m happy to say

BIll Gasiamis (09:41)
Understood. That’s excellent. Now, what kind of stroke was it? Did they determine the cause and have they put you on some kind of medication or program to prevent another one? What was the issue with the stroke?

Jeff Manuel (09:54)
No, it was a hemorrhagic stroke on the the right side.

Yeah, I was prescribed a whole bunch of pills and stuff.

I guess it helped at the beginning. I couldn’t tell.

BIll Gasiamis (10:03)
Did they tell you what caused the brain hemorrhage? Do you know?

Jeff Manuel (10:06)
the the doctor said said there was a clot in my this part of the artery on the my right side and my neck. And he also told me that I had a heart attack the week before.

But I didn’t see it, I think. It was just a mark one, I guess.

BIll Gasiamis (10:21)
So so was

So was it a brain hemorrhage or an ischemic stroke?

Jeff Manuel (10:27)
Maybe it’s a brain hemorrhage.

BIll Gasiamis (10:28)
Bleed in the brain?

Jeff Manuel (10:29)
Yes.

BIll Gasiamis (10:30)
Okay. But the clot usually refers to an ischemic stroke, which is like a very different from a a bleed on the brain.

Jeff Manuel (10:39)
No, the it was just the vein that was clouded.

BIll Gasiamis (10:41)
Uh-huh.

As well as a brain hemorrhage.

Jeff Manuel (10:43)
Yes.

BIll Gasiamis (10:43)
So you were really going through it. You had a heart attack, a clot issue and a brain hemorrhage all at the same time?

Jeff Manuel (10:49)
Yes.

BIll Gasiamis (10:49)
Wow. Under. Got it. So how long did you spend in hospital, Jeff?

Jeff Manuel (10:55)
I was there from march twelfth to June fourth ninth in the hospital.

BIll Gasiamis (11:02)
About three months.

Support During Recovery

Jeff Manuel (11:04)
Yes.

BIll Gasiamis (11:04)
And who was there to support you during that time? Because if you’re if you’re no longer married and you live separately from your your former wife, who was by your side? How how did you get through that time?

Jeff Manuel (11:18)
That’s funny because it was my ex wife and my children.

She would bring in to see me and f they would feed me and look after me.

BIll Gasiamis (11:28)
That’s very cool. She stepped up.

Jeff Manuel (11:31)
She did she’ve been doing a lot for me. And I really appreciate it.

BIll Gasiamis (11:35)
Yeah, that is lovely. And then you left from the hospital. At some point they dismissed you or discharged you. Did you have to go into rehab after that to try and get your your left side up back up on board?

Jeff Manuel (11:51)
Well, in the hospital I was doing really hard but but I couldn’t I could still couldn’t walk or go up steps or anything, but they applied to put me into Connect. It’s called Connect Communities. And there was a whole bunch of different houses you live in. And it’s like you have your own room, you have your shower days, and you get fed three meals a day.

But everything was wheelchair accessible.

And it was the best two years I had.

There was that place was amazing. The people were amazing. And what they offered ya and taught you was amazing.

BIll Gasiamis (12:26)
Yeah. It sounds like you’ve gone on qu quite a spiritual kind of shift, some kind of a journey, an internal journey as well as the physical healing of your body.

Jeff Manuel (12:35)
Exactly.

This I can live with. This is only part of your meat suit you’re aiming your leg. It all depends on what’s upstairs and how you can teach p other people to live with what’s happening.

BIll Gasiamis (12:49)
What’s one of the biggest things that you learnt when you were in there, by the time you left after two years? Because at the beginning I imagine you wouldn’t have been as upbeat, as positive as you are now.

Mindset and Spiritual Growth

Jeff Manuel (13:02)
No, because

You still are learning your your

limits of being disabled or paralyzed. You still gotta live it’s like a regrowth. You learn from a baby again to crawl and then walk. And it’s like up until then it’s learning you think about things if you have to use the watchroom you think about it like twenty five different times before you actually use it.

It’s a like a learning process. And I’m just starting to learn again.

BIll Gasiamis (13:37)
So it sounds like the biggest recovery that you had that’s been the most meaningful then was that kind of mindset part of your recovery, the spiritual part of your recovery.

Jeff Manuel (13:47)
I I

I think once you get over what has happened, you become a better person.

But I I’d like myself again because I know I’m a good person.

And if it takes another four or five years to walk again, it takes that.

But if I can get as many tools into my tool chest, I can use later in life.

BIll Gasiamis (14:09)
Yeah. Yeah. And you know what I love about that is you’re kind of setting an example for your kids, right? Y they may not know it and

Jeff Manuel (14:16)
I tried to my best to set an example because I always said, Thank goodness it happened when I was only fifty two and not seventy eight when they got their families all grown up and their own worries. Didn’t want to be wrong about their father.

They stepped up and being adults when they were thirteen.

BIll Gasiamis (14:34)
Yeah. Were you also a smoker then?

Jeff Manuel (14:35)
Yes.

BIll Gasiamis (14:36)
Okay.

Jeff Manuel (14:36)
I did quit three months before going into hospital but I’m back smoking again, so

BIll Gasiamis (14:41)
You’re back smoking again at the moment?

Jeff Manuel (14:43)
Yes.

BIll Gasiamis (14:44)
And drinking?

Jeff Manuel (14:44)
The occasional drink. I’ve tested my limitations and see where it led.

But I don’t I don’t over anything, I’m sorry.

BIll Gasiamis (14:50)
Can I be can I be

Can I be perfectly blunt with you?

Jeff Manuel (14:57)
Yes, you can.

BIll Gasiamis (14:58)
Why don’t you reduce the amount of time it takes for you to get on your feet from four years to a s a shorter amount of time? And the best way to do that and avoid another stroke and be a real example for your kids is to stop smoking and drinking. That’ll make you more in a in put you more in the zone of allowing your brain to heal rather than continuously putting it in a space where healing is not possible.

Challenges of Recovery

Jeff Manuel (15:25)
So understood.

BIll Gasiamis (15:26)
I know the challenge with smoking and drinking is beyond just putting it down and not touching it. I know it’s linked to a lot of other emotions and a lot of other things. I used to smoke and drink as well. But the work to be done is in the it’s in when you don’t have those things to go back to to regulate your emotions or change your mindset, that’s where the work is need to be done. You need to pick up the skills that

make it possible you for you to deal with those particular emotions or those particular things that are going on that make you drink, that make you smoke. And that will enable you to also deal with those challenges of the grief that you’ve suffered in the past. And also will simultaneously make the right environment for healing the brain. And that should speed up the amount of time it takes for you to get back on your feet.

Jeff Manuel (16:20)
That’s gonna be my start processing.

BIll Gasiamis (16:22)
Yeah. I thought you know, we’re here to be honest and frank, and you’re being honest and frank. And I thought, well, I might as well just put it out there. There’s a lot of people that want to get better after stroke, and sometimes they’re doing the things that are getting in the way of recovery without realizing that they’re getting in the way of their own recovery. And that’s kinda like my job, you know, is to sort of say, Hey, here’s a mirror, pay attention to this. Have you seen this before? Are you aware of this? And and then that way, maybe together.

You know, we’ve learned something today and we can overcome and then we can move forward a little better.

Jeff Manuel (16:56)
That’s good advice.

BIll Gasiamis (16:57)
Are you back to independent living now?

Jeff Manuel (16:59)
No, no, no. I mean long term care.

I was in

BIll Gasiamis (17:02)
Yep. Tell me about

that.

Jeff Manuel (17:03)
It’s it’s it’s it’s good for me right now for what I need.

two years ago I had broken my my hip, so I had to get a hip replacement.

So it was extremely hard trying to get your legs into the bed.

BIll Gasiamis (17:17)
Did you have a fall because of the stroke?

Jeff Manuel (17:20)
Not because of the stroke, but there was a a mat that that my tire got jammed into.

BIll Gasiamis (17:26)
The wheelchair tire.

Jeff Manuel (17:27)
Yeah.

BIll Gasiamis (17:29)
man,

I got it.

Jeff Manuel (17:30)
It just slowed down my my mobility a bit in my rehab of the the walking but but it was okay. I got through it.

BIll Gasiamis (17:42)
Got it. And they did

a they did a hip replacement.

Jeff Manuel (17:46)
Yes.

BIll Gasiamis (17:46)
Understood. So then there was some rehabilitation associated to the hip replacement as well to get you back on your feet.

Jeff Manuel (17:55)
Well, caught sorta say get me on my feet, get me in the wheelchair. Yeah. it was another six weeks in hospital.

BIll Gasiamis (18:00)
Yeah, got it. Okay.

Yeah. You had a quite a journey, man. Like a lot of sort of downtime as a result of this condition and then all the little complications and bumps in the road. How have you sort of dealt with that mentally? Have you had somebody to talk to? Have you done some therapy? Like how is it that you’ve been been managing to, you know, wrap your head around all of this stuff?

Jeff Manuel (18:30)
and my mom always had a good say and she said everything happens for a reason. We just don’t know what that reason is at that time. And it’s like, okay, this had happened to me, so now I’m getting to learn why it happened because this is the rebirth of me.

In my journey.

I’m not the guy I was four years ago or five years ago. I’m me now. Somebody different.

Personal Transformation and Reflection

BIll Gasiamis (18:52)
Mm-hmm.

Had you had you in those last ten years before the stroke, had you forgotten about that side of you, that kind of spiritual element of you that you’ve rediscovered? Was it lost in the grief and in the drinking and in the all the work?

Jeff Manuel (19:09)
It went away somewhere, I don’t know exactly where it went, but it went away.

You know, being being on this on this side of the the grass, I guess, I don’t know how you would say it, but going through the healthcare system, you get to see a whole lot of people. And y and you you can sense their their expressions and stuff. A lot of good people. A lot of good people too.

BIll Gasiamis (19:32)
How’s your relationship with with your former wife and kids now? Are they nearby? Do you see them often?

Jeff Manuel (19:37)
And they are nearby, but I don’t see as often as you want. I see at least probably about once a month.

Well, we’re in contact, we text each other and phone each other every now and then.

to graduate next year, so

BIll Gasiamis (19:47)
Are the kids in school?

they’re graduating, so they’ve been busy with school and

Jeff Manuel (19:53)
Their friends and stuff, so

BIll Gasiamis (19:54)
Pretty normal.

Jeff Manuel (19:56)
Yeah, that’s normal teenagers.

BIll Gasiamis (19:57)
Yeah, understood. And your relationship with your ex wife, is it very cordial? Do you guys get along, even though you guys are exes and

Jeff Manuel (20:05)
Yeah.

Yeah, we get we always got along, but we’ve been way better friends the last couple of years.

BIll Gasiamis (20:14)
Yeah. That sounds like it’s a it’s a great relief for you. And also she’s able to really kinda take care and help out with the children.

Jeff Manuel (20:24)
Exactly.

Daily Life in Assisted Living

BIll Gasiamis (20:24)
What is a day like in your facility there where you live? What what do you guys get up to? How do they keep you occupied? What’s it what’s that like?

Jeff Manuel (20:33)
There is a there’s a you have breakfast at eight to ten and then lunches from twelve to one and dinners from five to six. And then you have the rec department that do little games and stuff in the activity room.

I usually go out and and enjoy the fresh air and the sun. It’s warming up here.

much fresh year and San John I can get the better.

BIll Gasiamis (20:55)
And

And do you have a few people that live in the facility with you? Is it quite a large facility? How many people are in there?

Jeff Manuel (21:05)
yeah, there’s three different floors. I’m on the main floor. And there’s probably

BIll Gasiamis (21:10)
Mm-hmm.

Jeff Manuel (21:13)
Probably two hundred people, two fifty in three floors.

BIll Gasiamis (21:16)
Mm-hmm.

A lot of people that I’ve spoken to in the past about those types of facilities get really down about They kind of don’t feel like they should be there or need to be there. How do you manage being there?

Jeff Manuel (21:29)
I’m not totally at the point where I can go live by myself. Right now I still need I still need this. Until I can afford something that is realistic. And you have to be realistic. You gotta think about things a hundred and fifty times more than you would regularly think about things.

BIll Gasiamis (21:34)
So it’s a cent.

Jeff Manuel (21:47)
I can still cook, but

Right now I gotta concentrate on being me.

BIll Gasiamis (21:51)
And getting better. And getting back on your feet.

Jeff Manuel (21:54)
Exactly.

BIll Gasiamis (21:54)
So you can still cook, which is awesome. So you adapted to cooking with one arm?

Jeff Manuel (21:59)
yeah, no problem. As long as you you know what you can do, your limitations, you can do anything.

BIll Gasiamis (22:04)
What’s the hardest part about preparing food with one arm?

Jeff Manuel (22:07)
Well, you it’s pretty hard to make a salad with one arm ’cause you can’t hold the tomato or the cucumber with the other. That’s about it. That’s where you get the you can get these the plastic cutting boards that have spikes in So you just lay out your vegetables.

And then you can use the one hand to cut it off.

BIll Gasiamis (22:27)
And is cooking encouraged to cook for yourself or is that just part of your occupational therapy?

Jeff Manuel (22:34)
at Connect you kinda you led up to being able to cook so the O T would give you a certain task and if you could achieve that task within a certain time limit you you would get X amount of dollars per week to go grocery shopping so you could cook for yourself.

usually and every night I would cook a meal for myself.

And then that graduated into becoming more self sufficient for myself so I could go in assisted living. So they found a place on the west side in assisted living and I lived there for a year and two years.

BIll Gasiamis (22:55)
And the

Jeff Manuel (23:09)
Like just threw you throws your curveball.

BIll Gasiamis (23:11)
Yeah, it sure does.

Jeff Manuel (23:11)
And up there, but

but you know what? I kinda like it. Because you get to meet people, you have discussions.

When you when you’re dying for communication

You can talk to anybody.

BIll Gasiamis (23:22)
Yeah. Your facility there, there’s is there a lot of downtime? Do you guys get to intermingle and connect with each other and share spaces together?

Jeff Manuel (23:34)
Yeah. We can do that. Until we up in the morning and that we go to bed tonight.

BIll Gasiamis (23:40)
Yeah. So it sounds like it’s the great kind of a great place for you, like a a like a space between being independent again to kind of help you get through all the things you need to get through before you qu kind of was it like graduate to independence, I suppose. Is that like i is w is that how you would describe it?

Pain Management and Coping Strategies

Jeff Manuel (24:01)
That’s that’s pretty good. I think to me now mentally the better I can become, the better my whole body will become.

BIll Gasiamis (24:08)
Hmm. What would be the hardest part of this stroke journey for you that that you kind of would be able to recall from all of this journey, the thing that was the hardest for you to deal with or overcome or or be challenged by?

Jeff Manuel (24:24)
Still

still deal with the post stroke pain. It’s the hardest.

BIll Gasiamis (24:30)
The fatigue.

Jeff Manuel (24:31)
The the constant pain.

BIll Gasiamis (24:33)
the pain. Yep. Is that on your left side?

Jeff Manuel (24:35)
And

arm, leg and shoulder, yeah, all on the left side.

BIll Gasiamis (24:39)
Do they medicate you for that? Do they try and give you some kind of pain relief?

Jeff Manuel (24:43)
No, I found my own.

More medicine.

BIll Gasiamis (24:45)
Understood. And is that manageable then now the pain? Does it kind of help ease the pain?

Jeff Manuel (24:50)
Yes, it does.

BIll Gasiamis (24:51)
Okay.

Jeff Manuel (24:52)
It eases it away for me and and helps me not think about it.

BIll Gasiamis (24:57)
Uhhuh. Understood. So is the smoking related to medic medicinal marijuana, perhaps?

Jeff Manuel (25:04)
No, I ’cause I don’t smoke it. I it’s take the gummies.

BIll Gasiamis (25:07)
okay. So it’s it’s medicinal marijuana then.

Jeff Manuel (25:09)
Yeah. Well it’s all legal in Canada, so

BIll Gasiamis (25:11)
The the Yeah,

it’s legal almost everywhere now. And it sounds like it’s actually very supportive of a lot of people that gummies sin seem to be a good alternative to you know, like the the Yeah. Or and also for some people it seems to be a better solution than the pharmaceutical painkillers.

Jeff Manuel (25:25)
Smoking it. Yeah, these are

I I g I s had to stop taking my pharmaceutical pills altogether.

BIll Gasiamis (25:40)
Why were they causing

Jeff Manuel (25:41)
After af

after four years I should know what’s happening to my body.

I didn’t feel no but it no better after four years of taking the drugs. So I decided no more drugs.

I’ll just have a gummy, figure out how I feel.

BIll Gasiamis (25:53)
Yeah.

Jeff Manuel (25:57)
Yes, this is working. I like it.

BIll Gasiamis (25:59)
How often do you have to take it?

Jeff Manuel (26:01)
Mm.

Wait, four four times a day.

BIll Gasiamis (26:03)
Okay. So you notice when it’s starting to wear off?

Jeff Manuel (26:06)
Yeah, it’s only when it comes to extremes that it would take another

BIll Gasiamis (26:09)
And it helps you sleep, I imagine.

Jeff Manuel (26:10)
It helps the whole body.

From your digestion and it has helped me.

BIll Gasiamis (26:14)
Yeah.

Jeff Manuel (26:14)
And

actually sleep also.

Sleeping eight, nine hours a day.

BIll Gasiamis (26:17)
Wow, that’s great, man.

Do you have a lot of contact with your medical team, the people who helped you through the early phases? Do you have regular follow ups or anything like that to check in with them?

Future Aspirations and Independence

Jeff Manuel (26:28)
No, sir.

I haven’t once.

BIll Gasiamis (26:30)
Does does the facility there have medical professionals that you can access?

Jeff Manuel (26:33)
Yes. Does the doctor assigned to me?

That comes every supposed to come up every three or four weeks.

BIll Gasiamis (26:41)
So what’s one of the things that you hope to do after you graduate from being in assisted care to being in independent living?

Jeff Manuel (26:52)
It’d probably have to be assist lived against.

BIll Gasiamis (26:54)
So again.

Jeff Manuel (26:55)
Assisted living.

BIll Gasiamis (26:56)
Yeah. My question was when you do kind of graduate from being in the assisted living to being independent in your own place again, what’s something that you’re kind of looking forward to be able to do?

Jeff Manuel (27:10)
The independence

BIll Gasiamis (27:11)
Can you have guests come and visit you at the facility that you’re at and hang out with you for the day?

Jeff Manuel (27:18)
Yeah. And if I want, I can transfer in the vehicle and we can go somewhere else.

BIll Gasiamis (27:23)
Understood. So Jeff, somehow you came across my podcast. What was it that made you do the search and find it?

Jeff Manuel (27:29)
Well, as soon as I was when I was in the hospital I started searching up stroke and disability and everything started popping up on my YouTube page and then I seen podcast recovery after stroke, so I started watching it and within the last year seen so many other people going through what you you’re going through.

It inspired me. It really did help me.

BIll Gasiamis (27:59)
And then you thought it was time to tell your story.

Jeff Manuel (28:00)
Yes.

BIll Gasiamis (28:01)
Yeah. Good move. I really appreciate you reaching out, letting me know what was happening to you, what you were going through, and also joining me on the podcast. Thank you so much for your time.

Finding Community and Sharing Stories

Jeff Manuel (28:13)
Thank you, Bill.

Bill Gasiamis (28:14)
Well, thanks so much to Jeff for coming on the show and being so open about what the last four years have actually looked like. The hospital stay, the rehab, the setbacks, and the mindset shifts that came with all of that. If there’s one thing to take from this conversation, it’s Jeff’s line. I’d like myself again because I know I’m a good person. That’s recovery in a sentence. Not just getting your body back, but finding your way back to yourself.

If you’re feeling stuck in your own recovery the way Jeff once did, I offer one-on-one coaching for stroke survivors, structure, accountability, and support from someone who’s lived it. You can apply at recoveryafterstroke.com/momentum. If you’re a parent navigating your own recovery or you know someone who is, please share this episode with them. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened.

is now available at recoveryafterstroke.com/book. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. Thanks for listening. I’ll see you in the next episode.











The post Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again appeared first on 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.

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