Recovery After Stroke

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.

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.

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.

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.

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.

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.

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.

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 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.

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?

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?

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.

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.

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.

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.

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.

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?

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?

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.

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.

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.

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.

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

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.”

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.

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.

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.

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

Transcript:

Robert (00:00)

Lacunar Stroke New Research (00:10)

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.

BIll Gasiamis (01:30)

Robert (01:33)

BIll Gasiamis (01:33)

Robert (01:42)

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.

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)

Robert (05:40)

BIll Gasiamis (05:57)

Robert (05:59)

BIll Gasiamis (06:01)

Robert (06:13)

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)

Robert (07:34)

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)

Robert (08:40)

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)

Robert (11:45)

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

BIll Gasiamis (12:20)

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)

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.

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.

BIll Gasiamis (18:03)

Robert (18:11)

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)

What’s the price?

Yeah.

Robert (21:13)

BIll Gasiamis (21:19)

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)

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)

Robert (26:00)

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)

Robert (27:14)

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

BIll Gasiamis (27:43)

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)

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)

Bill Gasiamis (29:19)

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.

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.

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.

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 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.

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, 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.

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.”

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.

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

Transcript:

Kory Langwell (00:00)

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)

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 (01:42)

BIll Gasiamis (01:43)

Kory Langwell (01:47)

BIll Gasiamis (02:12)

Kory Langwell (02:14)

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)

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)

BIll Gasiamis (03:22)

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)

BIll Gasiamis (03:50)

Kory Langwell (04:01)

BIll Gasiamis (04:17)

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

Kory Langwell (04:54)

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)

Kory Langwell (06:49)

BIll Gasiamis (06:53)

Kory Langwell (07:24)

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)

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)

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)

Kory Langwell (11:12)

BIll Gasiamis (11:13)

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

BIll Gasiamis video 25, image (11:22)

BIll Gasiamis (11:50)

Kory Langwell (11:59)

Yeah.

BIll Gasiamis (12:11)

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)

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)

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)

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)

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.

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.

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)

Kory Langwell (17:21)

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)

Kory Langwell (18:35)

BIll Gasiamis (18:45)

Kory Langwell (18:52)

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, 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.

BIll Gasiamis (20:04)

Kory Langwell (20:20)

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)

How common is foot drop?

Kory Langwell (20:56)

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)

Kory Langwell (22:29)

BIll Gasiamis (22:41)

Kory Langwell (22:51)

Yeah.

BIll Gasiamis (23:08)

Kory Langwell (23:20)

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)

Kory Langwell (24:51)

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)

Kory Langwell (26:06)

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)

Kory Langwell (27:33)

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)

Kory Langwell (29:12)

Yeah, absolutely.

BIll Gasiamis (29:23)

Kory Langwell (29:39)

BIll Gasiamis (29:53)

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

Kory Langwell (30:20)

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)

Kory Langwell (33:15)

BIll Gasiamis (33:30)

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, 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)

Kory Langwell (35:10)

BIll Gasiamis (35:31)

Kory Langwell (35:35)

BIll Gasiamis (35:37)

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)

BIll Gasiamis (36:36)

Kory Langwell (36:37)

BIll Gasiamis (37:04)

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)

Wow. Yeah.

BIll Gasiamis (38:01)

Kory Langwell (38:05)

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)

Kory Langwell (40:33)

BIll Gasiamis (40:36)

Kory Langwell (40:37)

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)

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)

BIll Gasiamis (41:35)

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. 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)

Kory Langwell (43:36)

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)

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)

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)

Kory Langwell (46:23)

BIll Gasiamis (46:41)

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.

BIll Gasiamis (47:41)

Kory Langwell (47:46)

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 Langwell (48:44)

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)

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)

BIll Gasiamis (50:19)

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, 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)

Kory Langwell (51:11)

BIll Gasiamis video 25, image (51:13)

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.

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.

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.

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.

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.

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.

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.

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.

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

BIll Gasiamis (00:00)

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)

Kate (02:04)

BIll Gasiamis (02:07)

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)

BIll Gasiamis (03:26)

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

Kate (04:02)

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)

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)

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?

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)

Kate (07:41)

BIll Gasiamis (08:03)

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

Kate (08:35)

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)

Kate (09:37)

BIll Gasiamis (09:38)

Kate (09:43)

Correct.

BIll Gasiamis (09:48)

BIll Gasiamis (09:58)

Doors open up for you.

Kate (10:30)

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)

Kate (12:23)

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)

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)

BIll Gasiamis (13:57)

Kate (14:17)

BIll Gasiamis (14:41)

Kate (14:57)

BIll Gasiamis (14:59)

Kate (15:28)

BIll Gasiamis (15:41)

Kate (16:04)

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)

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)

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)

Kate (19:11)

BIll Gasiamis (19:29)

Kate (19:33)

BIll Gasiamis (19:34)

Kate (19:46)

BIll Gasiamis (19:51)

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

BIll Gasiamis (20:26)

Kate (20:29)

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)

Kate (22:54)

BIll Gasiamis (22:55)

BIll Gasiamis (23:26)

Kate (23:43)

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)

Kate (26:17)

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)

Kate (27:28)

BIll Gasiamis (27:37)

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)

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)

regime, maybe.

Kate (30:48)

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)

Kate (31:54)

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)

Kate (33:08)

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)

that together? Who puts that whole thing together?

Kate (33:25)

BIll Gasiamis (33:53)

Kate (34:15)

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)

Kate (36:11)

BIll Gasiamis (36:39)

Kate (36:55)

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)

Kate (38:16)

BIll Gasiamis (38:26)

Kate (38:46)

BIll Gasiamis (38:54)

Kate (39:19)

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%.

BIll Gasiamis (41:21)

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)

BIll Gasiamis (43:40)

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)

BIll Gasiamis (44:26)

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)

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)

Kate (46:16)

BIll Gasiamis (46:18)

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)

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)

Kate (48:26)

BIll Gasiamis (48:35)

Kate (48:54)

BIll Gasiamis (49:01)

Kate (49:16)

BIll Gasiamis (49:18)

that feel rewarding and worth pursuing.

Kate (49:52)

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)

Kate (51:16)

BIll Gasiamis (51:23)

Kate (51:29)

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)

Kate (52:33)

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)

Kate (53:27)

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)

Kate (54:35)

BIll Gasiamis (54:37)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For stroke survivors, the preclinical research adds another dimension.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For the person doing the supporting rather than the recovering, I recorded How To Help Someone After Stroke — what it looked like from the bed. A dollar.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If the show has helped you or someone in your life, you can support it financially at patreon.com/recoveryafterstroke.

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

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

Highlights:

00:00 Kathy’s Life Before the Stroke

Transcript:

BIll Gasiamis (00:00)

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

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

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

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

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

BIll Gasiamis (01:30)

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

Paul (01:36)

BIll Gasiamis (01:38)

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

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

BIll Gasiamis (02:41)

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

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

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

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

BIll Gasiamis (04:31)

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

BIll Gasiamis (04:43)

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

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

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

BIll Gasiamis (05:10)

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

Yeah.

BIll Gasiamis (05:38)

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

Paul (06:31)

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

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

BIll Gasiamis (07:51)

Paul (07:54)

Yeah,

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

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

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

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

Paul (09:30)

BIll Gasiamis (09:34)

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

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

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

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

BIll Gasiamis (10:23)

the esophageal discomfort?

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

BIll Gasiamis (10:51)

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

BIll Gasiamis (11:13)

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

BIll Gasiamis (11:47)

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

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

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

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

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

BIll Gasiamis (13:29)

so to speak.

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

Paul (14:14)

BIll Gasiamis (14:14)

Paul (14:15)

BIll Gasiamis (14:16)

Paul (14:22)

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

Sounds good to me, you know.

BIll Gasiamis (14:25)

Paul (14:40)

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

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

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

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

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

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

BIll Gasiamis (17:36)

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

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

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

Paul (18:43)

BIll Gasiamis (19:06)

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

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

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

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

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

BIll Gasiamis (21:31)

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

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

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

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

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

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

BIll Gasiamis (23:40)

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

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

Paul (24:56)

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

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

BIll Gasiamis (25:27)

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

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

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

BIll Gasiamis (25:49)

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

BIll Gasiamis (26:17)

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

Paul (26:54)

autonomy.

BIll Gasiamis (27:15)

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

Paul (27:50)

You

BIll Gasiamis (28:12)

Paul (28:12)

Yeah.

Yeah.

BIll Gasiamis (28:42)

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

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

BIll Gasiamis (28:53)

Paul (28:53)

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

BIll Gasiamis (29:20)

Hmm.

Mmm.

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

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

Paul (30:37)

BIll Gasiamis (31:06)

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

Paul (31:40)

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

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

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

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

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

BIll Gasiamis (34:16)

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

Paul (35:09)

BIll Gasiamis (35:14)

Paul (35:21)

BIll Gasiamis (35:44)

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

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

BIll Gasiamis (36:44)

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

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

Paul (37:53)

Hmm.

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

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

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

It was very hard.

BIll Gasiamis (39:35)

Paul (39:38)

BIll Gasiamis (40:02)

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

BIll Gasiamis (40:42)

losing their shit?

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

Paul (40:55)

BIll Gasiamis (41:02)

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

Paul (41:10)

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

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

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

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

Paul (43:05)

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

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

Paul (43:34)

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

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

Sell a few after the recovery. Yeah.

Paul (44:33)

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

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

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

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

BIll Gasiamis (45:46)

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

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

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

Paul (47:11)

BIll Gasiamis (47:12)

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

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

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

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

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

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

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

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

BIll Gasiamis (50:16)

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

Paul (50:37)

BIll Gasiamis (50:47)

Paul (51:09)

BIll Gasiamis (51:16)

Paul (51:31)

you

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

BIll Gasiamis (51:47)

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

Paul (52:26)

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

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

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

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

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

Paul (54:31)

Yeah.

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

BIll Gasiamis (54:54)

Paul (54:59)

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

Paul (55:07)

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

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

Paul (56:00)

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

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

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

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

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

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

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

BIll Gasiamis (58:49)

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

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

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

Paul (1:00:32)

BIll Gasiamis (1:00:44)

Paul (1:00:58)

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

BIll Gasiamis (1:01:14)

Paul (1:01:22)

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

Yeah.

BIll Gasiamis (1:01:44)

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

Paul (1:02:22)

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

BIll Gasiamis (1:02:40)

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

BIll Gasiamis (1:02:50)

Paul (1:03:08)

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

BIll Gasiamis (1:03:42)

Paul (1:03:52)

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

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

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

BIll Gasiamis (1:05:27)

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

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

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

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

BIll Gasiamis (1:06:52)

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

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

BIll Gasiamis (1:07:21)

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

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

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

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

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

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

BIll Gasiamis (1:10:21)

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

Paul (1:10:39)

BIll Gasiamis (1:10:41)

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

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

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

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

Brad Pitzele did not set out to become an oxygen therapy equipment maker. He set out to survive. After years of battling significant health challenges, conventional medicine had given him answers that kept failing him. He tried around 200 treatments. Some helped. Many did not. Then he found EWOT Exercise With Oxygen Therapy, and something finally shifted.

Brad’s journey is not the same as a stroke. But what he discovered about oxygen, inflammation, and cellular energy maps directly onto one of the most stubborn obstacles stroke survivors face: the feeling that the brain has gone offline, that the body is running on empty, and that the path back is either impossibly expensive or simply does not exist.

In Episode 407 of the Recovery After Stroke podcast, Brad shares what EWOT is, why it works, and why he now makes affordable EWOT systems through his company, One Thousand Roads, specifically so survivors do not have to remortgage their homes to access oxygen-driven recovery.

EWOT stands for Exercise With Oxygen Therapy. The concept is straightforward: you breathe high-concentration oxygen through a mask while exercising even lightly, and that combination pushes oxygen into parts of the body that normal breathing cannot reliably reach.

Most people assume oxygen therapy means a hyperbaric chamber: a pressurized tube, a clinic, a course of treatments costing tens of thousands of dollars. Hyperbaric oxygen therapy (HBOT) is effective. Brad describes it as “a heroic treatment.” But it is also inaccessible for most survivors, financially and logistically.

EWOT operates on a related principle without the chamber. The key mechanism is not about oxygenating red blood cells; they are already carrying close to their maximum load under normal breathing. The target is the blood plasma. Plasma does not carry oxygen efficiently under resting conditions, but during exercise, even light exercise, blood pressure and circulation increase enough to force dissolved oxygen into the plasma. That plasma can then reach the micro-capillaries, the tiny vessels that feed tissues deep in the body, including areas of the brain that become inflamed and oxygen-starved after a stroke.

One of the most commonly reported and least-explained symptoms after stroke is fatigue that does not go away, no matter how much a survivor rests. Most survivors are told that is just part of it. Brad’s framework centres on mitochondrial dysfunction.

Mitochondria are the energy-producing structures inside cells. After stroke, the cells in and around the affected area are often not dead; they are in a kind of low-power state. Brad describes it as a “brownout”: the lights are on, but dimly. The mitochondria are not producing energy at full capacity, and one significant reason for that is insufficient oxygen supply to the tissue.

“The cells that are offline after a stroke are not all dead. Some of them are just starving. Oxygen is part of what feeds them back.” — Brad Pitzele, Episode 407

When EWOT increases plasma oxygen during exercise, it can reach those inflamed, under-oxygenated micro-capillaries that larger vessels cannot access. The result, for some survivors, is a gradual improvement in energy, cognition, and physical capacity, not because the therapy is miraculous, but because it addresses a specific physiological deficit that conventional post-stroke care often does not target.

The honest answer is that EWOT and hyperbaric oxygen therapy are not equivalent. HBOT delivers oxygen under pressure, which drives it into tissue more forcefully. For certain conditions, particularly in acute or severe cases, hyperbaric oxygen has a stronger evidence base. 

But for many stroke survivors in the subacute or chronic phase of recovery, access is the defining variable, not theoretical ceiling. A home-based hyperbaric unit costs $50,000 to $75,000. A clinical course can run to $60,000 or more. EWOT systems are available for under $2,000. 

The question Brad puts to survivors is not “which is better in a lab?” It is: “Which one can you actually do, consistently, at home, over the months and years that brain recovery requires?” Consistency matters more than peak intensity in long-term neurological recovery. 

EWOT does not require running on a treadmill. The exercise component can be a stationary bike, a recumbent bike, or simple seated leg movements with one limb strapped in. The goal is to raise circulation enough to push oxygen into the plasma, not to hit a cardiovascular fitness target.

For survivors exploring this option, Brad’s team has built a specific resource at onethousandroads.com/stroke-recovery with a listener discount of $100 to $500, depending on the package. There is also a broader introduction to EWOT at onethousandroads.com/pages/exercise-with-oxygen-therapy.

If this episode resonated with you or if you want to explore more conversations about recovery options that do not require a second mortgage, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is available at recoveryafterstroke.com/book.

And if the Recovery After Stroke podcast has been useful to you, you can support it financially at patreon.com/recoveryafterstroke. Every contribution helps keep the show going and these conversations accessible to survivors around the world.

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.

Why pay $60,000 for hyperbaric oxygen? EWOT brings oxygen therapy into your living room — and could help the brain cells that are only offline.

One Thousand Roads

Dive deeper on EWOT and red light therapy.

Highlights:

00:00 Introduction and Background

Transcript:

Brad Pitzele (00:00)

BIll Gasiamis (00:15)

That are blocking oxygen delivery to cells in the recovering brain. We talk about mitochondrial dysfunction, post-stroke fatigue, and why Ewatt is worth understanding as an accessible alternative to hyperbaric oxygen therapy. Before we get into it, if you’ve found value in this podcast and want to support it financially, you can do that at patreon.com/slash recovery after stroke.

And if you haven’t yet read my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, it is available at recovery after stroke dot com slash book. Here’s my conversation with Brad.

BIll Gasiamis (01:19)

Brad Pitzele (01:22)

BIll Gasiamis (01:24)

out and ⁓ connecting with me to educate me on another thing that I can bring to stroke survivors that could potentially help them in the rehabilitation side of their brain. The the thumbnail that people found on YouTube is probably gonna have E W O T on it somewhere. E what. And it sounds something like something out of that ⁓ space war out of out of what is it?

Brad Pitzele (01:53)

Wars. Star Wars.

BIll Gasiamis (01:54)

Like the Ewok, right? And it doesn’t really mean anything to me. But before we descri tell people what Ewok is, ⁓ tell me a little bit about your background, the work that you do and how it is you came to be on the podcast today is for s for for the specific discussion that we’re gonna have.

Brad Pitzele (01:58)

Sure. ⁓ yeah, so I ⁓ I I’m an e recovering engineer. I like to joke. I spent my first decade of my life engineering. later on in life, I left engineering and went into different pursuits and I became chronically ill, had a variety of medical issues, ⁓ cancer, autoimmunity, and eventually Lyme disease.

And I was in really bad shape. And a doctor recommended I look into either hyperbaric oxygen or this exercise with oxygen therapy, EWAT, that almost no one had heard of, and I’d never heard of it. ⁓ I I I had tried like everything to get better at this point. I was many years in special diets, ⁓ all sorts of supplements and ⁓ all sorts of modalities and things. And

nothing really worked. There was nothing in a matter of fact, some of the medications I took actually gave me cancer. So it kind of forced me on this road to try something different. ⁓ and eventually I found my way back to health through exercise with oxygen when so many things weren’t working. ⁓ and actually later paired that with ⁓ red light therapy. ⁓ and along the way I started because I’m an engineer and I’m inquisitive, I like

It was Lyme disease is kind of a do-it-yourself disease. ⁓ so I started digging in and pouring into research, not just on Lyme disease, but autoimmunity, ⁓ chronic illness, ⁓ trying to figure out what the heck was going on with me. And so ⁓ what I found about exercise oxygen therapy along the way was really fascinating to me. and about a year into using it, I went back to that same doctor and he was kind of shocked.

At my turnaround, and he was like, What did you use? Did you do oxygen? And I said, I did. And he was like, Who’d you buy it from? I want to tell my patients about it. And I said, I didn’t buy it, Doc. I actually ended up making my own. And he was kind of surprised by that for obvious reasons. And then he said, Well, gosh, would you consider making it for my patient? And so, my patients, and so

that’s how we got into this business back in two thousand eighteen. We launched one thousand roads to kinda make exercise with oxygen therapy accessible to people who are dealing with chronic health conditions.

BIll Gasiamis (04:39)

The blue pill, take that one, everything gets fixed. I mean, stroke is not like that, right? And it’s and it’s stroke is also a you’re on your own kind of thing. Because once you get out of the acute phase, once you get sent home, the ⁓ follow up and the medical fraternity doesn’t have a system to kind of say to you, we can’t help you. Speak to that guy. ⁓ that guy might not be able to help you, but but there’s a guy over there.

Brad Pitzele (05:09)

BIll Gasiamis (05:33)

We can’t put that down just to eat what? We can’t put that down just to exercise with oxygen therapy. Give me the brief steps on the other things that you also attended to because people miss that.

Brad Pitzele (06:15)

Yeah.

I well, here’s what I’ll tell you. I started I started to get arthritis in my hands in like 2010 or eleven. and then I started taking traditional drugs for it. And one of the side effects of the drugs is higher risk of cancer and specifically melanoma, which I developed in two thousand thirteen, I wanna say, maybe two thousand fourteen.

And that kicked me off the traditional medical path. ⁓ to your point, you don’t you don’t in the stroke recovery, there’s not a traditional path. There it was a traditional path, but it was clear that it was a you know it was a choice between cancer and autoimmunity, and neither one seemed great to me. ⁓ from there I tried so many things, Bill. I did s I actually made a list recently and looked at it because I had it like just off the top of my head, I came up with 200 different things I did try. We’re talking special diets.

Eating all sorts of weird, strange things, all sorts of supplements, antibiotics, because it’s Lyme disease, herbal protocols, ⁓ ozone treatments, sa various different types of saunas, ozone sauna, infrared sauna, ⁓ heat steam saunas, ⁓ colonics, coffee enemas, ⁓ weird stuff, you know, you’d never think you’d do. I mean

BIll Gasiamis (07:39)

Brad Pitzele (07:42)

like many of your listeners, when you have a medical issue that isn’t treated by traditional medicine and you’re desperate to get your life back, you will you’ll try just about anything. You the the lens it goes through is like, Well, how bad can this hurt me?

Like like ’cause I know where I’m going right now. For me at least it was a I was just like this gradual step down.

It was like I knew like I I couldn’t do this. I had a young family. so, you know, that doctor, I remember him saying, like, look, Brad, we’re trying all these things, we’re gonna get you on thyroid medications and get that right, and we’re gonna do this. ⁓ there on that list of 200, there were about eight things that gave me any kind of benefit that I could identify. ⁓

But I remember he’s like, Brad, we’re gonna take out the big dog. We’re gonna do this ozone treatment. And it’s a special kind where we remove the blood from your body, we inject ozone, put it through UV light, and put it back into your blood. And this helps everyone. Like if nothing else works, this helps, but it’s really expensive. So we’re saving it, kind of. So he he did it. He’s like, do a course of three of them. And he’s like, You might feel bad after it the next day because it kills a bunch of stuff and might you might feel toxic. Or you might feel better. We’re not sure.

And give it a few days. And like I did all three of them, I never noticed a difference. And it was ⁓ the most depressing, scary part was like going through that. So when he said go do oxygen, I was like, Okay, like I’ve done everything else. I’m just gonna check the box so the doctor knows that’s not gonna work, so we can go try to find something else. ⁓

And I didn’t believe it was gonna work. I I you know, I didn’t jump on the the bandwagon gung-ho. I was, you know, kind of kicking and screaming. And that was part of the reason I built my own, is because at the time they were so expensive and the they were five to twenty-five thousand dollars. And I was like, I just can’t spend, you know, ten thousand dollars on an experiment. I just can’t do that. ⁓

And he also suggested maybe hyperbaric and that was like fifty or seventy-five thousand dollars. And I was like, geez, if I knew this was the the blue pill, as you said it, if I knew this was the blue pill, I’d go mortgage the house and I’d go do it because like then I could work full and I could do all the things, I could be present for the family, but ⁓ I couldn’t.

BIll Gasiamis (10:05)

you know what? And it’s not, and and the reason it’s not for a lot of people is because you need to have penumbras the brain from a stroke survivor perspective that are recoverable and that you can bring back to life that are offline, not dead by ⁓ cell death because of the stroke. And there’s no diagnostic process in the majority of the people I’ve spoken to, you can’t diagnose somebody and then work out whether they’re a candidate, and that really

Brad Pitzele (10:20)

BIll Gasiamis (10:33)

Brad Pitzele (10:38)

Right.

higher yes, you have a higher level of certainty

before you spend the money.

BIll Gasiamis (11:04)

Brad Pitzele (11:33)

BIll Gasiamis (11:34)

can’t spend that somewhere else.

Brad Pitzele (11:36)

If you’re like, wow, now I don’t have money. I feel trapped. There’s nothing I can try. Then hope starts to dwindle. And I

say like hope is is like the most potent weapon in recovering from a chronic health condition. It’s a double-edged sword because like you’re s afraid to get hope up because you’ve been let down. But it’s also the thing you need. You ha like when when you start losing hope, and I and I’ve been at that point, it just gets incredibly dark.

⁓ and incredibly scary.

so I I think that was part of it. I just wouldn’t allow it. It was the financial part. I you’re right. You only have so many shots out of the bow. But it was also like if it doesn’t work and I am depleted financially you know, I don’t like that that brings me to a a level of hopelessness I I’m not sure I can confront.

BIll Gasiamis (12:53)

Brad Pitzele (13:12)

We all love

we all love reading that inspirational story. No one wants to live it if they can avoid it, I’ll tell you.

BIll Gasiamis (13:23)

hundred percent. ⁓ so so you’ve tried all this stuff, you’re unwell, and then somebody says to you, try oxygen. Now, what I imagine when I hear oxygen is get a can from the local gas supplier, ⁓ pop pot in a tube, put it on the back of your chair, wheelchair. You know, I’ve seen a lot of older guys who have got it, and then they’ve got oxygen attached to their face and they’re breathing in oxygen. What specifically did

your doctor tell you to get and if you didn’t get what he suggested, like w what did it look like for you?

Brad Pitzele (14:00)

When you’re exercising, you can easily take in 50 or 60 liters. So it’s a massive multiplier. So you need something that’s going to give you a large amount of oxygen. Now, there’s two ways you can get oxygen in your home. One is that bottle you mentioned, and then you’re always refilling it, and you can imagine lugging one of those things around. ⁓ the other way is there’s a device called an oxygen concentrator, and all you do is you plug it into the wall.

And it turns the it purifies the oxygen in the room. So, you know, at sea level, the oxygen in the room has 21% oxygen and it can purify it to 93%.

Now, the challenge with these devices is they put out either five or ten liters of oxygen in a minute. So not enough to exercise with. If you were to try to exercise with it, you would also be sucking in this air at 21% and diluting it. ⁓ and so what you do is you take this device and you fill a large reservoir, it’s about a thousand liters, ⁓ and you fill it up.

using this device and then you hook up a hose with a mask on it and then you breathe through the mask while you do a fifteen minute exercise session.

BIll Gasiamis (15:41)

Brad Pitzele (15:45)

BIll Gasiamis (16:06)

a bagpipe, a massive bagpipe.

Brad Pitzele (16:10)

BIll Gasiamis (16:12)

Brad Pitzele (16:16)

I’ve s I’ve been using it for a decade straight now.

BIll Gasiamis (16:33)

Brad Pitzele (16:37)

⁓ and so there’s this really well-established linkage between oxygen and cancer. Even today, a ton of research on that. So in the 1960s and 70s, there was a a German physicist and prolific inventor named Manfred von Arden. Now, and he started to want to do research on Otto’s work, and he he actually started doing research on exercising with oxygen as an anti-cancer protocol.

And some of the research he found was really fascinating. what without getting overly technical, basically it our circulatory system, obviously, this is really relevant to stroke, ⁓ people deal in strokes, is as you get down into the the end runs of your circulatory system, there’s capillaries and they’re like thinner than a human hair. And this is where your nutrients and your oxygen are actually exchanged with the cell.

And what he found is as we age naturally this inflammation builds up on the lining of our capillaries. And it actually causes the capillaries to swell shut so that now none of your red blood cells can get by. Now, I mean, this is how exquisite our body is designed. ⁓ our capillaries are actually thinner than a red blood cell. So under the most healthy of conditions.

A red blood cell actually needs to fold up like a taco to get into our capillaries and deliver that oxygen in the last mile of our circulatory system. So any

swelling in that capillary can cause a blockage. And now all the cells downstream are not getting oxygen and in a sufficient quantity. And so they kind of go into what they what he kind of referred to as like a brownout, right? Like it’s a low energy state. They’re doing anaerobic respiration to get some energy. Maybe some of the smaller red blood cells might squeak by here and there and give a little bit, but they’re not getting the full oxygen they need. And what he found is by doing this procedure,

just a few times he had very elderly people with very inflamed ⁓ capillaries. He was able to re-establish normal blood flow. And the reason is is oxygen is incredibly anti-inflammatory. ⁓ and a lot of research on that we can go into a little bit later.

So, number one, it causes this anti-inflammatory reaction inside these inflamed capillaries to reopen them. But it also does something really amazing that he discovered is when you’re doing this procedure, ⁓ it causes the oxygen to not just attach to our red blood cells like it always does, but it also saturates our blood plasma, which is this clearish liquid that our red blood cells ride on. And

Our blood plasma is a thousand times thinner than a red blood cell. So if you imagine these blockages, red blood cells are not getting through, but obviously the blood plasma can get through as long as it’s like as thin as water. So as long as there’s any opening there, and it can immediately deliver oxygen downstream, both to cause an anti-inflammatory impact in the capillaries, but also to all those cells that are starving. And so you can obviously, as we’re talking through this, you can kind of

see how this fits folks who are dealing with various different strokes ⁓ and how that can help them as well.

BIll Gasiamis (20:32)

Because of too much oxygen, ⁓ ill because of not enough oxygen. So what is what what is becoming ill of too much oxygen and why is ninety nine percent saturation not that?

Brad Pitzele (21:18)

You can actually get it without hyperbaric. So hyperbaric is oxygen under pressure. You can get it at normal barracks. So if you were just sitting on the couch breathing oxygen, you could eventually get oxygen toxicity. Now, it would take over twenty-four hours. So if you were breathing just pure oxygen, no exercise, sitting on your couch for 24 plus hours, it starts to get into the risky zone.

When you’re doing exercise with oxygen, that’s actually one of the cool things about it that because of the synergies of exercise and oxygen, it’s impossible to get oxygen toxicity for two reasons. one is that reservoir is only a thousand liters. it’s not a high enough dose that you could get a oxygen toxicity. It is a massive dose, it’s about the same amount of oxygen you take in in a day, and you can take it in in 15 minutes, but it’s not more than.

And the second reason, even if we could make our reservoir 10x, 100x, and you could exercise nonstop, you still couldn’t get oxygen toxicity because when you’re exercising, your body produces a massive amount of carbon dioxide gas.

And that goes into our bloodstream and it increases pressure in our circulatory system. And that actually forces the oxygen out of the circulatory system and into the cells. So it works as a protectant as well from oxygen toxicity. So that’s oxygen toxicity. It’s a real risk. ⁓

Most of the time it’s a very controllable risk. You know, if you’re doing hyperbaric, they’re gonna keep you in there for so long so that you’re not gonna be at risk generally. ⁓ if you’re assigned to do oxygen while you’re stationary at home, they have protocols to make sure you’re not doing it, you know, twenty-eight hours nonstop sort of thing. ⁓ or they have you wear a cannula where where you’re also taking in air and it’s diluting it.

⁓ and in exercised oxygen therapy, it’s not really possible because of the massive amount of carbon dioxide. ⁓ now, not enough oxygen. So if you if you want to measure your oxygen in your blood, the way they normally do it is a device called the pulse oximeter. You can get one for 20 bucks off Amazon. What it does is it looks at how much how many of your red blood cells are saturated with oxygen. And what you’re gonna find in most folks.

Is it’s close to a hundred percent. It’s ninety-eight percent, it’s ninety-six percent, ninety-seven percent. ⁓ there’s not a lot of room in our blood for more oxygen. So that’s why it’s important that ewak can actually oxygenate our blood plasma. The same with hyperbaric does the exact same thing, it oxygenates our blood plasma. So

BIll Gasiamis (24:26)

that’s the key ingredient. It’s oxygenating the plasma as well. Where where previously you’ve got let’s say ninety seven, ninety eight percent saturation of your red blood cells. What we’re doing is adding that little bit of extra oxygen into the space where the plasma is. That’s kind of the key difference.

Brad Pitzele (24:36)

And there’s two reasons why it’s important. so normally, just for comparison, you and I sitting here, maybe 2% of all the oxygen in our blood is in our plasma, so it’s not very much. ⁓ but under these conditions of IWAT and hyperbaric, we can saturate that blood plasma. And it’s important for two reasons. One, obviously, it increases the oxygen carrying capacity of the blood, but that’s the more minor one. The more major one is that the blood plasma can get into

let’s just say the nooks and crannies, smaller spaces in our body where inflammation is blocking off access of red blood cells to downstream cells. And so it can deliver a dose of oxygen where it normally is not able to get.

BIll Gasiamis (25:40)

Brad Pitzele (25:52)

BIll Gasiamis (26:02)

Brad Pitzele (26:05)

Yes.

BIll Gasiamis (26:31)

Brad Pitzele (26:55)

BIll Gasiamis (27:00)

Brad Pitzele (27:16)

BIll Gasiamis (27:27)

And before that it was, you know, ⁓ processed white bread, it was alcohol, it was cigarettes, ⁓ it was all the stuff that you get in a packet that doesn’t really help to nourish the body, right? So I went back to basics. We’ll call it just for the simplicity of the explanation, we’ll call it protein, ⁓ vegetables and basic carbohydrates like rice or potato.

And then what I found was that inflammation decreased, and that was a game changer in how I experienced my brain. And it was a game changer in how quickly I improved neurologically. But just so that people know, it wasn’t the be all end all, it didn’t remove the damaged cells that still are in my head that mean I experienced my the left side of my body in a completely different way than my right side.

I’ve got numbness, proprioception issues. I’ve got ⁓ tingling, I’ve got burning, I’ve got ⁓ spasticity, you know, the muscles are tight. So all that stuff is still there. But I have a better experience of the rest of my body and brain because of the things that I took out. But what I didn’t have was the link between exercise, which I do, light exercise, because I’m a stroke survivor. I can’t.

use the left side of my body like I used to. so I would do exercise ⁓ like riding an electric bike because it’s easier to pedal, like walking and like doing very light weights at the gym. ⁓ but I didn’t have that oxygen part of the the therapy. And that’s kind of why I interviewed the guys about hyperbaric to understand how oxygen supports how

mimicking i a hypoxic brain in the chamber supports ⁓ so how how does like what’s the next part like how does that support the brain to heal let’s give stroke survivors an understanding so that they can kind of grasp that I know we spoke about how oxygen gets into the ⁓ into the red blood cell we spoke about how it gets into the plasma but like

Brad Pitzele (30:15)

BIll Gasiamis (30:20)

Brad Pitzele (30:21)

Yeah. It’s a good question. I think you’re right. I you know, we don’t I will say we don’t try to go out and pitch like exercise with oxygen therapy is a panacea or it’s everything for everyone. Even the name of our company, ⁓ one thousand roads, is about paying homage to everyone’s own healing journey and recognizing everyone’s unique journey.

So I’ll say that, but what I found about oxygen was in IWA in particular. What was fascinating to me was for me when I was dealing with Lyme disease, which similar to folks who are dealing with the stroke, there’s a variety of different symptoms and s from different causes. And I was trying to treat all these things with different protocols, different supplements that and I found that when I started digging into oxygen, I was shocked at how many of them came back to it. So when you have

A stroke, often there’s a lot of ⁓ emerging research about mitochondrial dysfunction. And this is interestingly, mitochondrial dysfunction. Now ten years ago when I was researching it, no one heard of it or cared about it. And it’s really burst onto the scene because you’re gonna find it

⁓ At the heart of so many chronic health conditions, right? ⁓ you’re gonna it’s actually they’re looking at it in cancers, ⁓ chronic illnesses of all sorts, Alzheimer’s, all sorts of cognitive and ⁓ autoimmune conditions, etc., etc. So ⁓ you have this disrupted mitochondria, right? So there was a period of time when your cells were not getting enough energy, whether it was a hemorrhagic stroke and

Blood wasn’t being delivered to those cells, so no nutrients, no oxygen, or an ischemic stroke where they were just cut off ⁓ because of a clot or whatnot. And so they were not getting nutrients. In each of these cases, what happens immediately when the cell runs out of oxygen, like I was talking about that brownout, it goes from aerobic respiration to anaerobic respiration. And anaerobic respiration, ⁓ it’s

It only can produce 5% of the energy as aerobic. So the cell is in a low energy state, which is the first problem, which means it doesn’t have energy to repair, it doesn’t have energy to take out the trash, detoxify. so it’s kind of stuck. But also ⁓ it creates a lot of metabolic waste. So it creates lactic acid, it creates free radicals, all these things produce more inflammation, like you were talking about. So

Now we’ve got these mitochondria, which are dysfunctional. They don’t have the energy to repair. They don’t have the energy to take out all these dead cells or ⁓ you know, all these other byproducts of the immune system and the natural kind of response to this damage, which then leaves more of it hanging around to produce more damage, and they’re producing more damage themselves. So it’s kind of like this swirl, and it’s ⁓ you know, it’s a downward swirl, if you will. ⁓ so

When you can re-oxygenate the mitochondria, the first thing you’re doing is you’re giving them the energy to do whatever it is they need to do. ⁓ and that can be the immediate like feeling sharper, like, ⁓ I feel like I can get my thoughts together quicker. ⁓ it can be, ⁓ I feel like I’m more in control of my emotions. And I I don’t feel like sometimes I have a disproportionate emotional response to something. It can be I I don’t have that brain fog.

⁓ you know, that sort of thing. Or I literally have energy. So our brain actually consumes like 20% of all the oxygen in our body. And it’s only like two percent of the mass. So it’s like punching 10x its weight, right? So when your body starts running low on oxygen, it starts conserving. And the one of the things it tells you to do is like cool it, like stop using your muscles. You’re tired. You need to just sit there and veg out.

BIll Gasiamis (34:06)

Brad Pitzele (34:27)

When you can reestablish normal oxygenation, it improves energy. ⁓ it improves sleep, it improves memory. and the the cells have energy to start repairing and detoxifying. ⁓ and then obviously I always think it’s cool because we’re pairing it with oc with exercise. And there’s so much research on the benefits of exercise. You mentioned it was so important, Bill, in in your healing journey.

And you know, we know how important exercise is for a stroke survivor.

Well, now we’re pairing it with oxygen and we’re using that exercise to catapult more of that oxygen around the body through the circulatory system while your blood vessels are dilated and opening up. So if you’re still dealing with blockages in your microcirculation, which most stroke survivors are.

You’re opening them as wide as they they naturally can at that moment, and that’s when we’re feeding more oxygen to them. So it works it kind of hand in hand in that respect.

BIll Gasiamis (35:48)

Brad Pitzele (36:00)

It’s perfect.

Yeah.

BIll Gasiamis (36:17)

Brad Pitzele (36:48)

and breathe the oxygen. So there’s a few ways you can do it. you know, it doesn’t have to be banging it out on a treadmill trying to get your seven minute mile. ⁓ you don’t need to do that. We have folks, you know, depending on where they are, you can start with slow walking on a treadmill. You can start with calisthenics. You can start with stretching.

⁓ gentle aerobics in your living room. You can start by, you know, lifting weights. You could be sitting and lifting weights with the the hand that’s not. We have folks, and this is probably not so much for ⁓ stroke survivors, but maybe jumping on a ⁓ a rebounder, like a little trampoline if you’ve got the balance one with the handle. ⁓ we have people using under-the-desk pedal bikes, the ones you can get for $49 on Amazon while you’re sitting.

BIll Gasiamis (38:03)

Brad Pitzele (38:04)

The first thing folks notice, the very first benefit most folks notice when they start doing is the exercise is easier. So I always describe this like if you were ⁓ jogging on a treadmill at, I don’t know, pick a number, you know, four miles an hour and you put the mask on, you wouldn’t feel like you were getting the same exercise at four miles an hour. You you crank it up to four and a half, and then later you crank it up more. And

Your endurance actually improves much more quickly than if you were just doing exercise alone. ⁓ and there’s a ton of actually research on you know Olympic athletes using it for performance enhancement, which is not what we’re using for in this, but it’s kind of a nice little side effect. So we have folks who come to us who who are out of condition. We’re not talking about the physical disabilities, but out of condition, we’re like, I couldn’t do.

And they’re shocked at what they’re doing and they come back and tell us in three months, look what I’m doing, sort of thing. ⁓

But it will meet you where you’re at. So if you want to do passive Ewatt, you can do that for a while as you’re working and as you start to feel better. Then maybe you’re using the under desk pedal bike. And as you’re getting your balance back and feeling better, maybe it’s a a real stationary bike later or walking on a treadmill and so on and so forth. ⁓ the goal isn’t to bust hump and like try to, you know, get a new record. As a matter of fact, I find that for most folks that sets you back. You wanna kind of you wanna

do within an envelope that you’re comfortable with because

If we work out too hard, also we set ourselves back because in most chronic health conditions and in stroke, additionally, we talked about this fatigue that’s due to an energy deficit. So if you go out there and overwork, you’re just putting your body in more of a deficit and potentially putting it in more of an inflammatory environment. And we’re trying to do this at a level that’s in you know anti-inflammatory and helping you recover.

BIll Gasiamis (40:30)

But you said the equivalent of ⁓ chair yoga, you know, where all I had to do was just move an arm or move a leg and do something just to get me physically going and then it would benefit. That’s what I love about it. The under-the-leg pedal bike, ⁓ under-the-desk pedal bike is one of the best things because you can strap in your leg with the deficits if you have a leg that has deficits, and you can do all the or the majority of the pedaling with the other leg, which is strapped in.

Brad Pitzele (41:07)

BIll Gasiamis (41:29)

Brad Pitzele (41:45)

BIll Gasiamis (41:51)

Brad Pitzele (42:00)

BIll Gasiamis (42:17)

⁓ brain is offline, not dead. ⁓ so all of these things, ⁓ the previous episode that I recorded with Jack, your episode right now, like all are things that you can do that support brain health, brain recovery, ⁓ overcoming all the some of the challenges that stroke causes. And what I love about this specifically is that you can do it from your house.

and you don’t have to go anywhere, but there is a cost. So let’s talk about the cost a little bit because I I want to mention it because of the massive difference to hyperbaric, which can cost up to sixty grand if you go on the right protocol. And ⁓ that’s unattainable for most people, let alone a stroke survivor who just lost their ability to earn ⁓ and may not have sixty grand to splash.

Brad Pitzele (43:48)

BIll Gasiamis (43:48)

so what is the cost of getting a machine, setting it up and putting it in your house?

Brad Pitzele (43:54)

You know, I think we actually we’ve been in business since 2018 and we had our first customer come back and tell us they wore out their machine like this year. So I have to stop saying we’ve never had one wore wear out yet. So we’ve had one. ⁓ so it it’s one of I think that’s one of the things that’s great about it is it’s something you can do in your house. It’s something that doesn’t take a lot of time. When I was dealing with my chronic health issue, I was

joke around about the ceremonies of counting pills and doing this modality and doing that. And they all in stroke survivors, I think, recognize the same thing. It starts to crowd out your life. And then eventually you kind of throw your hands up. You’re like, I it might be helping, but I just don’t have four hours a day for all this stuff. Like I just I need to go on and and live my life too. So it’s something that ⁓ it’s 15 minutes. You do it three to five times a week in your home.

⁓ it’s a one time expense and then it’s you know, it’s something you’ll have for many, many years.

BIll Gasiamis (45:12)

Brad Pitzele (45:15)

BIll Gasiamis (45:17)

Brad Pitzele (45:35)

You know, when the doctor asked me if I’d make him first patients, I I I I thought about what you were saying about how like spending sixty grand to find out if something’s gonna work. And I felt like I was taking advantage a lot when I was very ill. So we wanted to make something that was accessible to people who are chronically ill. They might not have the ability to earn money. They’re on a fixed in like I

have a I guess a deep personal experience and empathy there sort of thing. So ⁓ that’s yeah. So we ship worldwide.

BIll Gasiamis (46:27)

Brad Pitzele (46:35)

BIll Gasiamis (46:42)

Okay. What kind of ⁓ things can people find on the YouTube channel?

Brad Pitzele (46:56)

BIll Gasiamis (47:17)

path forward, a journey forward as to how to ⁓ s how to kind of obtain the silver lining in stroke recovery. And when I wrote it ⁓ in 2018, when I started writing it, something like that, 2018, 2019, I was lacking a lot of the extra pieces that I could put into ⁓ the mindset chapter, for example, or the exercise chapter, or, you know, the nutrition chapter. And

In the last five or six years, I’ve been picking up those pieces to sort of attach to those chapters because they’re really relevant. And with the exercise chapter, I think this protocol was the one thing that was missing because I made the point of how important exercise was. I didn’t make the point of how you can exercise and get more bang for your buck during that exercise by

Increasing the amount of oxygen that you were getting into your ⁓ bloodstream. How would I have known that if I hadn’t come across the science, which I hadn’t? Plus, there’s only so much you can put in each chapter, but this is the perfect addition. Like, and I love it. So I can go on and on about how much I think this is amazing. Brad, I really ⁓ want to thank you for reaching out and joining me on the podcast.

Thanks for the work that you do. I’m glad that you’ve been able to get your health back and now you’re helping other people.

Brad Pitzele (49:06)

BIll Gasiamis (49:08)

or explore the equipment, head to 1000Roads.com Stroke Recovery. Brad has arranged a discount for listeners of this show of between one and 500 dollars, depending on the package you choose. This episode pairs well with the episode 402 with Jack Clifford, which covers a protocol for regenerating blood vessels around the injured area of the brain.

The two conversations complement each other. Worth going back to if you haven’t heard it yet. Now, if this episode was useful, please share it with someone who could benefit. And my book, The Unexpected Way That a Stroke Became, the Best Thing That Happened, is available at recoveryafterstroke dot com slash book. And if you’d like to support the show financially, I would love it if you could. You can go and do that via patreon.com/slash recovery after stroke. I’m Bill Garciamas.

Thanks for listening. See you on the next episode.

The post Brad Pitzele – How Exercise With Oxygen Therapy Brings Hyperbaric-Style Benefits Home appeared first on Recovery After Stroke.

In 2024, a team of Italian researchers published a study in the New England Journal of Medicine that stopped the cardiovascular science community in its tracks. They found microplastics, tiny synthetic fragments embedded inside the carotid artery plaque of more than half the patients they examined. And the patients who had them faced more than four and a half times the risk of a serious cardiovascular event compared to those who didn’t.

This isn’t a distant, theoretical risk. These are living people who had already been identified as having carotid artery disease, and plastics were found inside their arterial walls. For stroke survivors and those at elevated risk of stroke, this study raises important questions that the medical system has not yet caught up with.

The study by Marfella et al., published in the New England Journal of Medicine (2024), enrolled 304 patients who were undergoing carotid endarterectomy, a surgical procedure to remove plaque from the carotid arteries. Researchers analysed the excised plaque for the presence of microplastics and nanoplastics.

58% of patients had detectable levels of polyethylene, polyvinyl chloride (PVC), or polystyrene in their arterial plaque. This was not contamination from the surgical procedure; it was already there.

Over a 34-month follow-up period, patients with microplastics in their plaque had a 4.53 times higher risk of a combined endpoint: non-fatal myocardial infarction, non-fatal stroke, or death from any cause.

Inflammatory markers were significantly elevated in the microplastics-positive group. IL-18 and TNF-alpha proteins associated with systemic vascular inflammation were markedly higher in plaque samples that contained plastics. This suggests the mechanism is not simply physical obstruction, but an inflammatory cascade triggered by the presence of synthetic material in arterial tissue.

The carotid arteries are the primary conduits supplying oxygenated blood to the brain. Plaque accumulation in these vessels is one of the leading causes of ischaemic stroke, and carotid artery disease is a condition many stroke survivors are already living with.

“The patients with microplastics in their plaque had a 4.53 times higher risk of stroke, heart attack, or death over the 34-month follow-up. That’s not a marginal finding. That’s a signal the research community needed to take seriously.”

The NEJM study doesn’t yet tell us whether removing microplastic exposure after the fact reduces risk. It doesn’t confirm that healthy individuals with no existing carotid disease are accumulating plastics at the same rate. And it cannot tell us which plastic sources are most responsible because we’re exposed to microplastics through drinking water, food packaging, air, and a dozen other vectors simultaneously.

But what it does tell us clearly and with high statistical significance is that microplastics in arterial plaque are associated with dramatically worse cardiovascular outcomes.

Science at the frontier moves in one direction at a time. This study establishes association, not causation. It cannot yet answer:

Whether people without existing carotid disease are accumulating microplastics at comparable rates. Whether reducing exposure actively reverses or slows plaque-associated risk. Which types of microplastics are most biologically harmful? Whether there will be a clinical screening tool for this in the near future.

These are the questions the next generation of research will need to answer. In the meantime, it’s reasonable to act on what we do know.

No clinical screening currently exists for microplastics in arterial plaque. There is no blood test, no imaging, no biomarker that your GP can order today. What you can do is reduce your ongoing exposure, particularly through food and water contact with plastics.

Evidence-informed steps worth discussing with your treating team:

Use glass, stainless steel, or ceramic containers rather than plastic for food and drink storage. Avoid microwaving food in plastic containers; heat accelerates the leaching of plastic particles. Filter your drinking water; some filters (carbon block and reverse osmosis) reduce microplastic levels significantly. Reduce consumption of highly processed foods in plastic packaging. Bring this study to your vascular neurologist, cardiologist, or GP and ask whether it’s relevant to your personal risk profile.

This is not a recommendation to take a supplement or start a treatment. It’s an invitation to have an informed conversation with the people responsible for your care using the best available evidence.

If you found this useful, my book walks through the science of stroke recovery in the same evidence-first, no-hype way. Find it at recoveryafterstroke.com/book.

Want to go deeper and support the channel? Join the community at patreon.com/recoveryafterstroke.

The post Plastics in Your Arteries: The Stroke Risk Study You Must Know appeared first on Recovery After Stroke.

Stroke Symptoms Dismissed: François Couillard has spent his career protecting people’s vision. As the CEO of Optometry Canada, the national body representing every optometrist in the country, he understands better than almost anyone how much vision matters, what threatens it, and how to preserve it.

Then he had a stroke. And it only attacked his eyes.

The irony is not lost on François. But what makes his story essential listening for every stroke survivor and caregiver isn’t the cruel symmetry of it; it’s what happened at the emergency department before his stroke even reached its worst point.

His symptoms were dismissed. He was sent home.

François arrived at the ER with symptoms. He was assessed and sent home. What the medical team didn’t know and what François didn’t yet know was that he was mid-stroke.

He walked home alone in the middle of the night.

This is not an isolated story. Stroke symptoms dismissed at the emergency department are more common than most people realise, particularly when the presentation is atypical. Symptoms that don’t match the classic FAST criteria, such as facial drooping, arm weakness, speech difficulties, and time to call, can be overlooked, minimised, or misattributed. Visual disturbances, in particular, are frequently missed.

For François, the consequences became clear the next morning.

François woke up having lost the right visual field in both eyes permanently. The condition is called homonymous hemianopia: a stroke-related vision loss that removes the same portion of the visual field from each eye simultaneously.

Here is what makes it disorienting: the brain doesn’t show you the gap. It fills it in. You don’t see darkness where the vision is missing, you see what your brain invents to complete the picture. You look normal. You appear, in many ways, almost normal.

But you are not.

What François describes and what many survivors with stroke-related vision changes will recognise is the extraordinary cognitive load of compensating for what you can no longer see.

The brain works continuously to fill in the missing visual field. That work is invisible to everyone around you. There’s no cast, no limp, no obvious marker. But the fatigue it generates is profound and relentless.

This is the invisible disability that follows many stroke survivors: the gap between how they appear and the effort required to simply exist in a world that assumes full function. Stroke vision loss recovery is rarely straightforward, and the fatigue accompanying it is one of the least-discussed consequences of stroke.

François knows this intimately. He continues to live it.

One week after his stroke, François completed a 100km cycling event.

One week. 100 kilometres.

This isn’t recklessness, it’s the character of the man. A pragmatist who processes by doing, who defines himself not by what has been taken but by what remains. His approach to his stroke carries a dark honesty: he hasn’t minimised what happened, but he hasn’t surrendered to it either.

The 100km ride is not a metaphor. It happened.

François returned to his role as CEO of Optometry Canada. He leads a national health organisation while navigating permanent vision loss, invisible fatigue, and the ongoing adaptation that stroke demands.

He also carries the particular weight of professional identity intersecting with personal experience. The man who has advocated for Canadians’ vision health now lives with the consequences of a stroke that targeted exactly that. He has become, in a specific and irreversible way, both the professional and the patient.

That dual perspective, the insider who became the survivor, gives his voice a precision that very few stroke stories carry.

Episode 406 of the Recovery After Stroke podcast is not simply about vision therapy after stroke, although François discusses that too. It is about what happens when stroke symptoms are dismissed and the cascade that follows. It is about the invisible burden of neurological fatigue. It is about identity, adaptation, and the kind of resilience that doesn’t announce itself.

If your stroke symptoms were dismissed, or you know someone whose were, François’s story will feel familiar in a way that is both validating and important. If you are navigating stroke vision loss and wondering whether the fatigue you feel is real, it is, and François names it plainly.

Listen to Episode 406 with François Couillard available now on all major podcast platforms.

Bill’s book – The Unexpected Way That A Stroke Became The Best Thing That Happened

Support the show: https://www.patreon.com/recoveryafterstroke

When François Couillard, CEO of Optometry Canada, went to the ER with stroke symptoms, he was sent home. By morning, he had permanently lost part of his vision. In this episode, he shares his experience with stroke-related vision loss, invisible fatigue, and the resilience required to adapt and move forward.

Highlights:

00:00 Introduction

Transcript:

François Couillard (00:00)

Bill Gasiamis (00:00)

François Couillard (00:14)

BIll Gasiamis (00:25)

And what happened in the months, hours, days and months that followed is a story about the gap between how you look and how you feel, about the invisible cost of neurological damage, and about what it means to keep leading an organization dedicated to the very thing your stroke attacks.

Bill Gasiamis (01:13)

François Couillard (01:16)

Bill Gasiamis (01:18)

François Couillard (01:24)

Bill Gasiamis (01:34)

It was 29 Celsius and plus two.

François Couillard (01:42)

Bill Gasiamis (01:46)

I thought Melbourne was crazy like that. Often we have 40 Celsius days in summer and then the next day it will be 20 Celsius.

but I think I prefer the 20 Celsius one than the plus two Celsius one.

François Couillard (02:02)

Bill Gasiamis (02:11)

François Couillard (02:16)

I can see the world, but you’re a little bit, I can’t describe it. It’s just difficult to explain, but I just don’t see you well. Now I happened, and she said, you look fine and everything. happened to, at that point I was working with the Canadian Association of Optometrists. My role was CEO of the Canadian Association of Optometrists. So anything site related, I’m gonna call an optometrist. I’m not an optometrist myself.

So I called the president of the association. had just talked to him an hour or two ago. I said, hey, ⁓ I’m having this thing there. Should I worry? And he said, well, it could be one of two things. You’re either having a ⁓ migraine headache or you’re having a stroke. So go lie down for half an hour. And if it’s still there, head to emergency.

So that’s why I did not lie down for half an hour. I stood up and told my wife and that’s still there. We live five minutes from the hospital from a nice large tertiary care hospital. So she took me straight there. I was full of energy just like I am now bubbly, no pain, just this funny thing. So I walk in the emerge and I tell them, you know apparently I’m having a stroke with the looking at me and it’s like, you don’t look like you’re having a stroke, but okay. ⁓

So they got me through fairly quickly, maybe half an hour. They triaged me in. ⁓ they asked me all sorts of questions and, ⁓ I got the CT and came back and said, yeah, you had a stroke. So I, ⁓ they, they gave me a rain check. I walked back home in the middle of the night and, ⁓ I almost got lost cause my site was so bizarre. I couldn’t have my bearings. So I went back home and.

Then I started having a pretty bad headache and ⁓ that’s it. That’s the start.

Bill Gasiamis (04:45)

François Couillard (04:49)

I had no other symptoms. Everything else was functioning. I could touch my nose. I could do everything. So they said you had that episode, you zapped a piece of your brain and now go home.

Bill Gasiamis (04:52)

François Couillard (05:06)

And in this case, no, they were kind of happy that they, was out of danger, it’s a large emerge. So they’ve done their job. I’m not dying. And, but as far as treating what happened to me, which I actually lost a quarter of my field of vision. So I’ve got quadrantinopia. They said, go and get a field of vision, a proper field of vision test and get that done by an ophthalmologist.

And to argue with them, know what, optometrists can do that too, and I can get the appointment next day. Australia and Canada have pretty similar scopes of practice for optometrists. We’re lucky in the States as well. Other countries, it’s typically ophthalmologists, but in our countries, we have good optometry. So, anyhow, the next day I had an appointment with an optometrist, and I did the field test, and it showed, boom.

But then for the next several weeks, I personally figured out what sort of assistance I could get. Vision therapy. I got some help also to set up my screen so I wouldn’t get too much ⁓ glare and too many contrasts. So just getting that adjusted. And there’s organizations in Canada that help those that are vision impaired. And I was able to get in pretty quickly to get access to those people. I knew where to go.

But the system didn’t send me to any of that. And so that’s what prompted me to call you and share my experience because ⁓ unfortunately, for a minor, I call it a minor stroke for me. I was very, very lucky. ⁓ It seems that if it’s just a vision, there’s not too much out there. There’s not that much awareness that something can be done and should be done.

And we also need support. So that’s why I thought I could share my.

Bill Gasiamis (07:18)

François Couillard (07:31)

Right.

Well, they did some tests and blood work and all that and immediately they couldn’t find anything. It actually took them about eight months to figure out what might have happened. It was definitely a clot. And after a bunch of blood tests done by a very specialized neurologist, they discovered that I had a genetic mutation for prothrombin.

2 % of the population has that. I just happened to have that and also had a PFO. So it is possible and they found that I had little clots in my my low in one of my lower legs. So it’s possible that a clot left went on a field trip through my through my heart bypassed the lungs went straight to the brain. So that’s probably what happened. But no, they did.

They didn’t know for sure. Actually, when I showed up in eMERGE, and that’s the other thing, they were very poorly set up to diagnose and evaluate ⁓ site emergencies. ⁓ The guy that was like the resident that was assisting the emergency physician, I probed them while the emergency physician was out of the room. said, what do you think I have there? He says, it’s probably a retinal detachment.

And I said, I can’t be a retinal detachment just happening at both eyes at exactly the same time and exactly the same part of the world that is blocked. So that’s not retinal detachment. It has to be the brain. can’t be just the eyes. So, yeah. Anyhow, they saved me. I didn’t die.

Bill Gasiamis (09:20)

even if it’s a day or two later. But I would have thought that there would have been an admission in that you would have been admitted into the hospital and I would have thought, this is a gentleman, he’s 63 years old, you are in the high risk category for a stroke, regardless of how you look, just because you’re 63, our risk of stroke increases. But ⁓ I’m still stunned by hearing those types of stories.

But also I’m not surprised because it’s not the first time. I’ve done 404 episodes, you it’s not the first time that somebody said to me the diagnosis was a shambles or I was sent home when I was having a stroke and I shouldn’t have been. It happens very often, not only in Canada, in America, in England, in Australia, all over the world, ⁓ people come from. And it’s just fascinating to hear that then,

You took it upon yourself to look into the support services that you needed, right? That reminds me of me. That’s exactly what I went through in 2012. So I had a bleed. The first bleed ⁓ was obvious. know, there was a, ⁓ in America, it’s probably the size of a dime, ⁓ shadow on my brain. The second bleed was six weeks later, about the size of a golf ball. And that blood was sitting in my head.

But if you looked at me, I looked completely fine on the outside. I didn’t have any visible signs that I was having a stroke other than the fact that cognitively I was a mess and I had fatigue and all the things that stroke survivors talk about. I couldn’t, ⁓ my balance was off. couldn’t communicate properly. There were so many issues. So they sent me home after three days after the second bleed, seven days after the first bleed.

They determined what the cause was roughly. They knew it was a blood vessel that had bled. They didn’t understand why. And then I went home unable to drive, walk, start, complete a sentence, remember who came to see me, ⁓ angry, ⁓ like emotionally unwell, all sorts of things. And no follow-up appointment to say you should go and see a

neuropsychologist, you should go and see this person for that, this person for that. And I went to a counselor, my ⁓ psychologist, and she realized that I was in a pretty terrible way as far as communication is concerned. And she said to my wife and I, maybe you should go and see a neuropsych. And I was like, okay, what does a neuropsych do? And she said, well, they’ll evaluate the level of your deficits. So not knowing that I could

François Couillard (12:16)

Bill Gasiamis (12:41)

François Couillard (12:48)

Bill Gasiamis (13:09)

And it was 2012, which meant there was no YouTube channel about stroke recovery. There was no, hardly any books that you could buy. You you couldn’t reach out to anybody. It was a really difficult time. It’s partly the reason why the podcast exists. So I’m still surprised, you know, not, you know, not completely, I’m not, I’m not naive enough to think that.

mistakes don’t happen anymore but even after 14 years like I’m still surprised that people go through this it shouldn’t happen.

François Couillard (14:11)

it’s ironic that I worked in the field of the eyes of vision. And the only thing that got affected on my stroke was my vision. This is really ironic. So I don’t know what happened in the other world there. But something happened. And but if I hadn’t worked in that field, it would have been very complicated.

Bill Gasiamis (14:23)

François Couillard (14:37)

Bill Gasiamis (14:37)

Mm-hmm.

BIll Gasiamis (15:01)

Now back to Francois.

Bill Gasiamis (15:32)

François Couillard (15:45)

I’m sure a lot of your stroke survivors have experienced, maybe not all, but some have experienced sight issues and they probably wouldn’t know where to go or they might not know that there are things that can be done to try to recover some of that sight through vision therapy. yeah, I was lucky to know what resources I could get, I couldn’t get access to.

Bill Gasiamis (16:25)

Yeah, what was life like before strike? I know you say, that’s a busy ⁓ job, but what else were you up to back in the day?

François Couillard (16:38)

I, very active, hyperactive, very, quite athletic actually. I do long distance ⁓ cycling and I do ski, cross country ski races and I’ve skied all over Europe. ⁓ So this was, this was end of November. So I’m starting, I’m finishing my cycling season about to get into my, into my ski season. ⁓ And like two days,

The day after my stroke, took it easy, but the next day I was in my basement doing an hour on my bike. And like a week after I did a hundred kilometers on my bike in the basement and I didn’t venture outside. So it’s like, this is me. have to be very active and, and, ⁓ I’m, I’m, so that hasn’t changed. ⁓ I work, I took, I took a little break. Well, what I call a break, I worked three days a week instead of five days a week, right after my stroke.

Bill Gasiamis (17:36)

François Couillard (17:41)

And as a result, I got a lot of support. I live in the healthcare industry. I work in the healthcare industry. So healthcare workers are supportive, friendly. They know how to give care, whether it be psychological care or physical care. So I got a nice extended support group. After a couple of months, I went back to five days a week. even though my physical stamina was great.

my mental stamina ⁓ struggled, you know, like many stroke survivors, I didn’t sleep that well for a little while, kind of hyper. ⁓ And ⁓ I was not emotional, I didn’t become ⁓ depressed. So I was lucky from that perspective. But my mental stamina, I couldn’t work for as long hours and the screen is tiring. And I told you I’m a cyclist. So that’s interesting because

If you want to be a safe cyclist, usually you go on a bike path. That’s the way to go. You stay away from traffic. Well, I hate bike paths now because my blind spot is one quarter of my field of vision and it’s here. And in Canada, when we ride our bikes, we’re riding this way and people coming the other way are coming this way. If I’m on a small bike path and it’s curvy and bikes come this way,

Sometimes I hear them before I see them. I see them at the last minute. And same thing happens when I ski. If it’s a narrow trail, someone might come at me and only see them at the last minute because I hear swoosh and then I look. So I’ve had to compensate, learn to lift my head a little bit more and not rely on my field of vision. So other than the mental stamina, other than that, I haven’t had any.

and the fact that I don’t see that well, I’m okay.

Bill Gasiamis (20:09)

François Couillard (20:36)

Bill Gasiamis (20:37)

François Couillard (20:37)

Bill Gasiamis (20:37)

François Couillard (20:44)

Well.

Now I do have prisms, but that’s for a different reason. Actually, when I consulted with an optometrist to get vision therapy, they also at the same time, diagnosed and I had one eye that would see an object kind of here and the other eye would see the object here. So this therapy to try to realign that, but we didn’t get quite the full alignment. So she provided me prisms to realign that, but

Bill Gasiamis (21:08)

François Couillard (21:19)

especially in certain environments. If I’m in a social environment where the lights are very bright outside or I’m in a big room full of people with people moving, then the brain is working in overtime to try to fill that void, make that picture. And it becomes very, very tiring. It’s interesting. You don’t realize how much brain power the sight takes. I took a look at… ⁓

the neurologist showed me the CT slice that shows my damage. And it’s like a big thing like this. It’s a big oval shape of destroyed cells, just cooked. Yeah.

Bill Gasiamis (22:30)

So driving is driving an issue.

François Couillard (22:35)

Bill Gasiamis (22:50)

François Couillard (22:56)

get honked at. I’ve never had that before. They honk at me and I say, ⁓ too bad.

Bill Gasiamis (23:02)

And that’s the thing. It’s a great thing that you mentioned that because I actually made a very concerted effort in November last year. I said that I was going to no longer be angry, aggressive and yell at people from my car when I’m driving. And I’ve and I’ve made, put so much work into not doing that. And I’ve had to re-remind myself when I’ve caught myself.

François Couillard (23:21)

Bill Gasiamis (23:29)

It still doesn’t occur to you, to me when I’m driving, when I’m a hothead Melbourne driver, it still doesn’t occur to me that, just take it easy. If they’re going slow, they’re probably paying more attention or being more careful or whatever the situation is. It doesn’t matter. It’s not going to make a difference to your life if you just wait a few more seconds to get through. ⁓ But I totally get how now they would be, people would be honking you.

and trying to move you along thinking, what is this guy doing? And having completely, being completely ignorant about the fact that ⁓ different people are visioned differently, and drivers are also visioned differently. And that changes the way that they have to behave on the road. Was there an assessment that was done to ensure that you could drive or was that not even a thing?

François Couillard (24:48)

the level at which you can see and maybe it’s a percentage, but I met that they were more concerned about the cognitive ability. So they had me do a test of cognitive ability ⁓ and I passed that. for 30 days I couldn’t drive and that was more to keep me in check in case I have another stroke right after. that was just, yeah, so that 30 days and then they said, no, you’re good to go.

I feel more at risk. Yeah, I feel more at risk on my bike than I do in a car. Because it’s more dynamic, it moves and moves all the time. So again, try to avoid bike paths, but there’s places we can ride around here where there’s no cars. It’s roads that are close to traffic. And we can we can ride our bikes or run or I do also roller skiing.

Bill Gasiamis (25:33)

Yeah, fair enough.

François Couillard (26:00)

Bill Gasiamis (26:15)

François Couillard (26:19)

about, I see two a year or so, you know, through the summer and fall. Yeah, but they’re normally on the side of the road and, you know, they don’t purpose, they don’t go in the middle of the road.

Bill Gasiamis (26:31)

I know, every movie I’ve seen though, that’s what they do.

François Couillard (26:39)

Bill Gasiamis (26:50)

the the brown bears the crazier ones or is it the black bears?

François Couillard (26:55)

Bill Gasiamis (26:59)

Yeah, we don’t have large animals like that that will ⁓ kill you. We have little tiny animals that will kill Spiders, snakes, we have little animals that you can’t see that you only know they’re there after they’ve bitten you. ⁓ But we’re still doing all right here. We still seem to be able to survive. your and before I get to my next question, I just need to ask this. can’t.

François Couillard (27:14)

Bill Gasiamis (27:36)

François Couillard (27:40)

full Lycra both on cross country skiing and in cycling. Yeah, full Lycra. Yeah, sorry. Yeah. We take ourselves very seriously. It’s like putting your Superman disguise and you go way faster. It’s just more comfortable. Really, it’s a matter of comfort, especially in the winter, cross country skiing. As soon as you start sweating, you freeze. So you have to have just the right…

Bill Gasiamis (27:49)

I hate you.

Uh-huh.

François Couillard (28:10)

have something that’s very breathable yet cuts the wind somewhat for when you go downhill. It’s a real science. Yeah. Yeah.

Bill Gasiamis (28:18)

the Simpsons put Flanders in a tight bodysuit skiing once and they showed off his butt and now the only thing I ever come back to is that image of Flanders doing that. So that’s all. That’s all that is. I love it. In Australia, we call people like you mammals.

François Couillard (28:26)

Yeah, yeah, yeah, yeah, yeah.

man in Lycra or? Yes, yes, we have the same thing here.

Bill Gasiamis (28:42)

Yeah, I love it. love it. Now,

you seem very upbeat and I love it. It is actually fantastic to have this conversation with somebody who had a stroke and things went so well, all things considered. And did you have moments where this kind of hit you another way? Like you didn’t feel…

François Couillard (29:02)

Bill Gasiamis (29:12)

François Couillard (29:13)

Well, a couple days after my stroke, had a really bad headache, really bad. So I called the 911, the ambulance came and I said, okay, you guys, should you take me back to the hospital? I need to? And is there something bad happening here? They said, well, depends. How do you feel? Would you like to go back or do you prefer to stay? I’m no expert.

I said, well, okay, I’m just gonna stay here. ⁓ I didn’t know I could take a painkiller for my headache. So I took a painkiller and it went away slowly. ⁓ Afterwards, ⁓ was more, I was never down ⁓ because I, yeah, because I felt, I didn’t feel that bad. And

But the uncertainty around figuring out what happened and could it happen again and how quickly could it happen? I think stroke survivors all struggle with that. ⁓ I pushed back when they wanted to give me statins and blood pressure pills and blood thinner. I pushed back and said, I don’t know, need that. But then they said, come on, put all the chances on your side, take the drugs. And I took them, no side effects. ⁓

And, ⁓ no, I don’t, I don’t feel sorry for myself. And maybe it’s cause I’ve, I’ve seen a lot worse. heard your podcast and seen people in much worse conditions. And in terms of sight as well, I’ve, I’ve seen in optometry, there’s all sorts of conditions where you completely lose your sight. And so it’s not that bad. And what am I to complain about? And I can still do pretty much all my daily activities. I just need to pace myself. As I said,

neurologically still. So I don’t, I mean, if I felt sorry for myself, it wouldn’t be of any use to anyone. So no, I think overall I’ve been, I’ve been lucky. I, but I was watchful. I was kind of observing myself saying, okay, I hear that I might get depressed and maybe I’ll have a little bit of a depression here. But so I was watching and, ⁓ but it didn’t happen.

So, but I think keeping my exercise routine, staying engaged at work, ⁓ had good support from my friends. Initially, I couldn’t do too much. So I had time to spend more time with my friends that I had, that I always, because I had such a busy life, I didn’t spend that much time just enjoying an hour chatting or something. So I started doing that again. And I…

as you say in your book, which I really liked and I liked the concept, having a stroke really, was not something that set me back. It’s something that provided me a new perspective, new experience in life and brought me to a new place. And I’ve learned so much that I would have never learned if I had not had a stroke. So in a way I was sent this thing and

It’s a nice, it’s an interesting experience. haven’t yet died from it. might, maybe something will happen. I get another stroke but I’m not going to worry about that until it happens.

Bill Gasiamis (32:41)

I like hearing this version of it. It’s because I’m the same guy.

François Couillard (32:48)

no, I was reading your story and I felt this is is how I feel. Yeah.

Bill Gasiamis (32:53)

and I live with it every day and the neurological fatigue is still there and the deficits are still there and all that type of thing. Now I am quite mobile, I’m independent and all that kind of stuff, so I understand the difference between my experience and some other people’s experience. I totally do. And I don’t want to take away from how they are going, how they’re feeling and what’s happening to them. I don’t want to minimize their experience. I just want to say, you know, like,

If you can find a way to be more like my attitude, not like me as a human being, but just my attitude, know, Francois’s attitude, it’s like, it doesn’t help, it doesn’t harm, it only benefits. And I don’t know how it’ll benefit you, but it will definitely benefit you in a small way. And that might create a snowball effect of more and more benefits that you never expected that you were going to have. And that come your way.

and that make life more interesting to observe and experience, even though it’s hard, even though it hurts, even though it’s exhausting, even though it’s challenging, even though you have less independence. Whatever the situation is, if the attitude changes just a little bit and you think about it like this is another experience that I have to go through, I have no choice, what can I learn from it? How can I grow from it?

you will learn from it and you will grow from it and you will probably make your life better and the other people around you their life better as well. And that’s the whole reason why the podcast exists. I hope that that’s the message that people get, not me telling people, this is what you should do, know, do it the way I do it. I don’t want to, I don’t want to put it out there like that. ⁓ Now, also I’ve met people who have had a stroke and have had very minor

deficits from it. One particular stroke survivor who I met was ⁓ also a client of mine who I was coaching who had a, who was very athletic, ⁓ used to ride a bike a lot. He ended up getting a numb sensation in his, one of his feet as the final deficit that never went away. And it was about the size of a golf ball. And it was the most

difficult thing for him to deal with. He couldn’t grasp how much of an issue he was making it, like in his mind he was overthinking it and it was causing him anxiety etc and he couldn’t settle down the overthinking mind. And we were working together just so that I could get him to the point where he could focus on

the entirety of the rest of his body and the fact that he was still back on his bike and riding and doing a hundred kilometers and all those crazy things. And it was like, ⁓ I’m not sure how to bring you back there. You know, how to develop your understanding of how well you are after the stroke. And we got there and we’ve been able to move beyond that phase, but

he was really struggling just with the fact that that one part of his foot felt different and he was always noticing it. You know my entire left side feels different and I always notice it and it makes there’s no benefit to notice it more often so I kind of

François Couillard (36:31)

can kind of understand him. ⁓ If you’re a high performance cyclist, which you might have been, ⁓ you become acutely aware of every little pain point. It could be your butt, could be your neck, top of your neck, back of your neck, could be your shoulders, could be your hands that go nimble. in order to do the sport you love and perform, you have to keep

Bill Gasiamis (36:36)

François Couillard (37:00)

Bill Gasiamis (37:25)

François Couillard (37:37)

Okay.

Bill Gasiamis (37:54)

François Couillard (38:15)

Right. It’s not a yes.

I think that’s a useful perspective.

Bill Gasiamis (38:24)

François Couillard (38:36)

Bill Gasiamis (38:37)

François Couillard (38:42)

And at the same time, I drop off a few things. I was overstretching myself between work and volunteer activities. And there’s one activity particularly that took me one evening every week and a lot of emails every day. And I told the group there, said, you know, guys, if you don’t mind, I need to get out of that. It’s too much for me. so I

I now had a kind of a reason to be able to say to give up something and clean up my act and focus on what was more important, which I should have done before because I was already overstretched, but I didn’t because I had a felt it was my duty or I’m enthusiastic. I want to let people down. So yeah, that was that was useful. Yeah. And connecting with the friends.

But what I found is as I got my energy back, and as you can tell, I’m pretty high energy, as I got my energy back, then I got back to my old, I’m too busy. I’m doing a lot of things now and I don’t have as much time for friends. I do have a bit more now because I retired in December. So now I have more time again. But ⁓ yeah, it’s a learning journey.

Bill Gasiamis (40:02)

which is my recording studio, and I actually physically have to just go, I’m going for a walk so that I can get a break. Otherwise I’ll be sitting here for seven hours solid.

François Couillard (40:41)

Bill Gasiamis (40:43)

that. And I could do that six or seven days a week. And as much as I enjoy it, I do look forward to someone breaking the cycle for me. So I didn’t have to have the responsibility to do it myself. My wife will say, are you going to be there all day? I’m like, where do you want to go? And she’ll say, want to go. Okay, let’s go. One hour. Can we do it in one hour? Yes. Bang. We’re out. Yesterday, a friend of mine called me and said to me, why don’t we go for a walk on Sunday? And I thought,

François Couillard (40:56)

Bill Gasiamis (41:12)

François Couillard (41:19)

Bill Gasiamis (41:41)

François Couillard (41:57)

That’s not healthy, you know that Bill. Yeah. Yeah.

Bill Gasiamis (42:10)

François Couillard (42:11)

Bill Gasiamis (42:13)

François Couillard (42:16)

Mmm.

So I’ll tell you what I did and I still do it.

I’ll tell you what I do. I, when I was working, I get up early 5:30 or something like that. And at 6:30, 7AM on my, I’m on my bike. I ride about 50 kilometers and I grab a coffee in the countryside and the same coffee shop every day. And I see folks there and I come back and I’m back home around nine and I started my work. So before I even started my day, I

took care of my exercise and I had some social interactions with people. And I’m kind of on this, I’m full of endorphins from my biking and then I dose myself by adding a bit of coffee and I have enough coffee just to get in the right space where I’m not too hyper and I still have the effects of my endorphins and I run through the day like that.

Bill Gasiamis (43:21)

It’s a science.

François Couillard (43:36)

Bill Gasiamis (43:40)

I do love that.

In the evenings, I like to go out. And you what’s weird in the evenings is as we age, my friends tend to be dozing off, you know, at 9.30, 10 o’clock. And I’m like, yeah, and they’re on their way home. And I’m like, ⁓ God, we’ve to go home early again. ⁓ To me, it’s too early to be going home at 9.30 and 10 o’clock.

François Couillard (44:03)

I’m one of those.

So I have friends, they like to invite a little group of us for dinner. They invite us for dinner at four. Four. So like at 4.30, we’re starting to have dinner. all athletes. Some of them do triathlons and like at 7.30, we’re gone and we’re in bed at nine. But you know, we’re up at five and we’re very active during the day. But yeah, we’re boring. Slow in the car and early in bed.

Bill Gasiamis (44:40)

Yeah, so I’m not up so early. So I know that at 5.30, you’re not setting an alarm. You’re probably just waking up naturally. It’s your time, know, 5, 5.30, especially if you’ve been in bed between 9 and 9.30. That kind of makes sense. That’s the right amount of hours to get out of bed. So it sounds weird for people that, oh my God, you get up at five o’clock and you go for a ride or you go to the gym. It’s just part of the normal cycle. It’s my cycle starts a bit later. So I’m probably

François Couillard (45:01)

Yeah.

Bill Gasiamis (45:22)

my left side which is tighter even tighter so you know when you go to the gym and you get that muscle ache the next two or three days my left side feels like that all the time anyway and going to the gym kind of exacerbates it and just makes it less

François Couillard (45:56)

Bill Gasiamis (46:04)

They put you in a room on a machine with another 20 people or so and there’s an instructor and they just take you through some exercises. It’s light, it’s gentle. And I feel like that’s going to be the thing for me.

François Couillard (46:42)

you do do you do cardio at all? Like bike or?

Bill Gasiamis (46:45)

but not so often. I have an electric bike, ⁓ an e-bike where my left leg when I pedal ⁓ doesn’t fatigue. So I bought it because I used to enjoy a bike ride and I would jump on the bike on the weekend and go for a ride. And after the strokes and surgery, my left leg gets fatigued within about five minutes. And then

François Couillard (46:59)

⁓

Bill Gasiamis (47:14)

François Couillard (47:19)

Yeah,

yeah. So you can’t, you’re not able cardiovascularly to get into that endorphin generation ⁓ mode where you would then get filled with these endorphins and that might remove some of the pain on your left side. Yeah. Yeah, that’s tough. Yeah. Yeah.

Bill Gasiamis (47:44)

Yeah. So, and what happened

when I first started writing, I’d fall off my bike a fair bit because I had, ⁓ I had stirrups because my left foot would fall off the pedal. So I’m not a professional rider. So I just had a regular bike and my left foot would fall off and then the pedal would damage my shin and it would be a nightmare. So I got a stirrup and then I would ride with the stirrup. then when I got to a stop,

François Couillard (47:55)

Okay, yeah.

Bill Gasiamis (48:18)

François Couillard (48:29)

Yeah. Yep.

That’s smart.

Yeah.

Bill Gasiamis (48:48)

François Couillard (48:49)

That’s great. That’s great.

That’s great. Listen, I want to tell you as well, one of your, as I was right after my stroke, was searching for information and I stumbled on, ⁓ I researched loss of sight from stroke or something like that. And I stumbled on one of your podcasts where you interviewed this woman, I forget her name, but who had experienced something similar. It was mainly sight loss, but for her it was bad.

Bill Gasiamis (49:09)

François Couillard (49:33)

Bill Gasiamis (49:58)

François Couillard (50:03)

Bill Gasiamis (50:10)

François Couillard (50:17)

Bill Gasiamis (50:18)

not enough. It’s still not enough. We need to get it out there. That’s over 10 years, right? So it’s still not enough. We need to get it out there. I need people to share and people are doing great work. I people to comment. I need people to like, I need people to do all of that kind of stuff, interact in any way that they can. And they are, and it’s brilliant and I love it and it works. ⁓ You know what’s amazing? If people are watching and there’s an ad, if they don’t skip it and they

François Couillard (50:25)

Yeah.

Bill Gasiamis (50:47)

François Couillard (50:49)

Yeah.

Bill Gasiamis (51:16)

Yeah. So thank you for saying that. I really appreciate it. I’m glad that it helped you. Tell me about your family a little bit. How did they react to your whole situation with the stroke and all the things that came after?

François Couillard (51:23)

My wife was, I’m married, we have a son, our son lives, lived in the States in those days now, he’s back in Canada. Of course, they were worried. My wife knows me, she knows and I tend to underestimate the, well, overdo things and poo poo risks and issues and I have a pretty high pain threshold.

So she doesn’t fully trust me when I tell her that things are okay. So I think she worried more than, ⁓ than she showed, but she was always there for me, very supportive. the one thing that was difficult is, getting her to, you know, as we sit at the kitchen, we have all our meals together. So we’re sitting and having a meal and she wants to share something. And especially when I was still working, ⁓ I just had nothing left in my brain to listen to her with empathy.

and she would get annoyed and I had to explain, it’s not you, it’s just my brain is fried, my brain is in ⁓ overdrive, the best thing, just accept it and that was tough on her, that was really tough. ⁓ So yeah, and I discovered a lot of people didn’t have a good understanding of a stroke and to this day people…

think I have a problem with my heart. Well, I have PFO, but 40 % of the population has a PFO. So that’s nothing. But people always ask me, how’s your heart? Well, I don’t have a problem with my heart. You know, it’s the brain. Well, it’s something that went to my brain. So a lot of misconceptions on what strokes are. In Canada, it might be the same in Australia, but there’s an organization called the

Well, the big charity is the Heart and Stroke Foundation. So they bundle together heart and stroke. So maybe that’s part of the confusion.

Bill Gasiamis (53:35)

François Couillard (53:36)

Bill Gasiamis (54:03)

François Couillard (54:25)

Bill Gasiamis (54:32)

François Couillard (54:39)

sometimes, you know, just I know I have this one email I need to send or I need this one little thing I need to do. And it’s just my brain has reached a tipping point. No, I cannot take anything more. ⁓ And in interactions like that, it’s it’s tougher because you’re trying to be nice to people.

Bill Gasiamis (54:57)

Yeah, I still get the odd, ⁓ strange look from my wife when we’ll have people over and I’ll just go and sit on the couch away from everybody, just daydreaming, trying to recover because a lot of noise, a lot of people, a lot of that just overstimulates me and I’ve got to go to the side and she’ll look over at me as if she’s saying, you’re so rude. I’m not being rude, my brain’s hurting. I to go over there.

François Couillard (55:27)

yourself to do that. Now you’ve got the wisdom to do that. Yeah. Yeah.

Bill Gasiamis (55:32)

be there. And then I go and reach out.

François Couillard (55:37)

I tell people, say, you know, most, well, all my friends know I had a stroke. if I tell them, say, you know, we won’t be staying late. This is always tiring for me. So and they understand and it’s not a problem.

Bill Gasiamis (55:54)

François Couillard (56:13)

Yes.

Bill Gasiamis (56:22)

François Couillard (56:29)

Absolutely. Yep,

it’s a risk. Absolutely. But there’s nothing I can do about it. I’m not gonna, it’s who I am. It’s how I am.

Bill Gasiamis (56:47)

François Couillard (56:48)

At the same time, she’s kind of giving up on me. She knows I don’t listen. that’s the problem with spouses. Over time, we unfortunately tune out, which we shouldn’t. We should always listen attentively, of course.

Bill Gasiamis (57:11)

François Couillard (57:16)

Yeah, you got it.

You got it. Yeah.

Bill Gasiamis (57:28)

François Couillard (57:34)

Bill Gasiamis (57:55)

because I always remember Stephen Hawking, the great physicist who was completely disabled ⁓ from the neck down from murder neurons disease, Lou Gehrig’s disease or whatever else they call it, and still had a fully, totally active life in the highest level of his profession and was still considered one of the greatest physicists of all time. And

And I think that his mindset amongst other things would have definitely had something to do with how active he was even though his body had completely ⁓ not been able to support him.

François Couillard (59:07)

Bill Gasiamis (59:10)

François Couillard (59:14)

BIll Gasiamis (59:22)

What he shared today about being turned away at the emergency department, about living with vision loss that nobody around you can see, and about returning to lead at a national level is going to matter deeply to people who have had their own symptoms dismissed or who are carrying the invisible side of stroke every single day. If this episode resonated with you, subscribe to the Recovery After Stroke Podcast wherever you get your podcasts. And if this show has helped you,

A review goes a long way. It helps more survivors find us. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke dot com slash book.

and if you would like to support the show, you can do that at patreon.com/recoveryafterstroke.

until next time, take care of yourself and keep recovering.

The post Sent Home Mid-Stroke: CEO of Optometry Canada on Vision Loss and Recovery – Francois Couillard appeared first on Recovery After Stroke.

There’s a moment in stroke recovery that almost every survivor reaches. You look at the person you used to be. Your job, your relationships, your body, your identity, and you realise something that nobody prepared you for: you can’t get that person back. The question is what you do next.

Greg Graham knows this moment intimately. An AVM (Arteriovenous Malformation), a rare tangle of blood vessels in the brain, changed the course of his life in an instant. What followed wasn’t just physical recovery. It was the hardest work of rebuilding everything from the ground up.

An arteriovenous malformation stroke happens when a cluster of abnormal blood vessels ruptures in the brain. Unlike ischaemic strokes caused by a clot, AVM strokes involve bleeding into the brain. The consequences depend heavily on where the bleed occurs, and for Greg, the impact was severe.

In the immediate aftermath, Greg found himself isolated. Six weeks of recovery largely alone. Relationships fractured under the weight of what had happened. The losses were not just physical; they were existential. The life he had built, piece by piece, was no longer available to him.

“I’ve lost everything. I don’t see a way forward.” This is the thought that lives underneath so much of early stroke recovery. It’s not self-pity. It’s the honest reckoning that comes when the gap between who you were and who you now are becomes impossible to ignore.

The dominant narrative around stroke recovery in hospitals, in rehabilitation settings, in well-meaning conversations with family is built around return. Return to work. Return to independence. Return to your life.

But for many survivors, this framing creates a wall they can never climb. The person they’re trying to return to doesn’t exist anymore. The brain has changed. The body has changed. The world has shifted in ways that can’t be reversed.

Greg’s insight, hard-won through the kind of experience that can’t be faked, is that rebuilding life after a stroke isn’t about restoration. It’s about construction. Not returning to a previous blueprint, but laying new foundations with the materials you actually have.

Rebuilding after a stroke is rarely dramatic. It’s the accumulation of small decisions made under enormous pressure. It’s choosing to engage with rehabilitation when nothing in your body wants to cooperate. It’s finding a reason to get out of bed when the reasons that used to work have stopped working.

For Greg, the path through began with a fundamental shift in framing. Instead of measuring recovery by what had been lost, he began to ask a different question: what is actually possible from here?

That question is deceptively simple. But it’s the foundation on which real recovery is built. Because once you stop trying to recreate the past, you free up everything you have to build something new.

One of the least-discussed dimensions of stroke recovery is identity. Who are you now? Not in a philosophical sense, in a practical, daily, operational sense. If your work defined you, and stroke took your ability to do that work, who are you on a Tuesday morning?

Greg’s experience speaks directly to this. The construction of a new identity after a stroke doesn’t happen overnight. It isn’t a single breakthrough moment. It’s a slow, deliberate process of discovering what you still are and what you’re becoming.

This is why Greg Graham calls himself the AVM Superhero. Not because recovery was easy, but because naming what you’ve survived and choosing to carry it with you rather than hiding from it is itself a form of strength.

Episode 405 of the Recovery After Stroke podcast is available on all major platforms. Greg’s story is one that will resonate with anyone who has faced the impossible question of rebuilding when going back is not an option. You can also find more resources at Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, a practical guide to recovery and personal transformation written from lived experience.

If this show has helped you on your recovery journey, 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.

The post Greg Graham – AVM Superhero: How He Rebuilt Life After Losing Everything appeared first on Recovery After Stroke.