Recovery After Stroke

When you meet someone who has had a stroke, you expect to see something.
A limp. A drooped smile. A visible clue.

What you often can’t see is the one thing that shapes their entire recovery: post-stroke fatigue.

For survivors like David Willick, fatigue wasn’t just tiredness — it was a complete rewiring of how his brain operated. And because nothing looked “wrong” from the outside, the exhaustion was misunderstood, dismissed, or invisible to everyone around him.

This is the part of stroke recovery that many people never talk about.
But for countless survivors, it becomes the most life-altering part of the journey.

If fatigue is the thing stopping you doing everything else, I recorded a session on the three changes that made the biggest difference to mine: 3 Things That May Improve Fatigue After Stroke.

In the first weeks after his ischemic stroke, David slept for 44 out of 48 hours. Twice.

Not because he wanted to.
Not because he was lazy.
But because his brain was fighting to rewire itself at a level no one else could feel.

Post-stroke fatigue isn’t physical tiredness.
It’s neuro-fatigue — the deep brain exhaustion that follows even the simplest task.

For David, driving for ten minutes meant sleeping for hours.
A restaurant meal became overwhelming within 30 minutes.
Noise, light, background conversations — all of it flooded his brain faster than it could process.

Survivors often say:

“I look normal, but I’m exhausted inside.”

And that’s exactly what makes post-stroke fatigue so frustrating.
People don’t see it, so they don’t understand it.

After a stroke, the brain becomes like a construction site.
Damaged pathways collapse.
New ones must be built.
Old ones must be rerouted.
Simple tasks suddenly require manual mode instead of the automatic brain patterns that existed before.

David described driving after stroke like this:

• “I had to consciously think about braking.”
• “If I brake too softly, I’ll hit the truck ahead.”
• “If I brake too hard, I’ll get hit from behind.”
• “Where’s the noise coming from?”
• “Why is the windshield so bright?”

That’s one minute of mental processing… for something he had done automatically for decades.

This is what drains survivors.
Not weakness — but the intense cognitive load of rebuilding pathways.

One of the hardest parts of David’s recovery was convincing others he wasn’t alright.

“I looked normal,” he said, “but I was struggling more than ever.”

Post-stroke fatigue is invisible.
You can’t X-ray it.
You can’t bandage it.
You can’t show someone what light sensitivity feels like or what it’s like to suddenly forget where you parked your car.

When fatigue shows up, it looks like:

• turning down invitations
• leaving a restaurant early
• needing another nap
• feeling overwhelmed in a shopping centre
• struggling to keep up with conversations
• cancelling plans last minute

To friends and family, it can look like disinterest.
To survivors, it feels like survival.

One of the best things you can say to a survivor is:

“Whatever you’re feeling is valid… and I believe you.”

Every stroke survivor eventually discovers this:
Recovery is not a straight line.

David described it as a long-term stock market chart — trending upward, but filled with unpredictable rises and drops.

Two good days in a row don’t guarantee a third.
A setback doesn’t erase progress.
Your brain is always working, always rewiring, always adapting.

And fatigue can flare for reasons no one can pinpoint:

• overstimulation
• weather
• stress
• sleep changes
• doing too much the day before
• mental load
• emotional overwhelm

You can be “fine” one moment and overwhelmed the next.

This is the reality survivors live with.
And it doesn’t mean they’re failing.
It means their brain is healing.

David didn’t just rebuild strength.
He rebuilt himself.

Here are the strategies that helped him navigate post-stroke fatigue and regain stability in his life:

David tracked his improvements daily.
Not because he felt optimistic — but because depression and mental spirals made progress hard to see.

Reviewing weekly entries became proof that he was improving, even when he couldn’t see it in the moment.

“When I felt discouraged, I looked back at the journal and saw how much better I was than the week before.” — David

He learned to respond to fatigue, not fight it.

Early on, if his brain said sleep, he slept.
If fatigue hit while walking, his wife spotted it instantly.
If his voice changed — softer, heavier — it became a signal that the day needed to slow down.

Rest wasn’t weakness.
Rest was medicine.

David went from:

• 6 hours per week
• to 12
• to 20
• to 30
• slowly back to full-time

At 20 hours per week, he almost quit — the fatigue was brutal.
But pushing in measured doses expanded his “ceiling” a little at a time.

This part of his recovery became one of the biggest catalysts for growth.

Before the stroke, success for David was high performance, global work, and climbing the corporate ladder.

After the stroke?

Success became:

• peace
• health
• family
• meaningful work
• mentoring the next generation
• living with purpose

That shift transformed everything.

David’s message is simple and powerful:

“It’s going to be okay.”

You may not return to the person you were before — but you can grow into someone wiser, more self-aware, and more grounded.

Here’s what he wants every survivor to know:

• Recovery is possible.
• Fatigue doesn’t mean failure.
• You can improve for years.
• Rest is part of rehabilitation, not the opposite of it.
• Don’t compare your recovery to anyone else’s.
• Track your progress — your future self will thank you.
• Your mindset shapes every part of your healing.

And perhaps most importantly:

“You’re allowed to say no. You’re allowed to protect your energy.”

Understand that:

• They’re not faking the exhaustion.
• They’re not being dramatic.
• They’re not “overreacting.”
• They’re not trying to avoid you.

They’re trying to survive a neurological crash you can’t see.

Ask them gently:

“What do you need right now?”
“How can I make today easier for you?”
“Do you need rest?”

Support doesn’t fix fatigue, but it makes the journey human.

If you’re dealing with fatigue, overwhelm, sensory overload or hidden deficits, I want you to know something:

You’re not alone — and recovery doesn’t end after rehab.

Here are two resources that can help:

• My book: The Unexpected Way That a Stroke Became the Best Thing That Happened — a practical guide to post-traumatic growth after stroke
  recoveryafterstroke.com/book
• Patreon:
  patreon.com/recoveryafterstroke

There’s a path forward.
There’s hope.
And your energy will rebuild — one small step at a time.

Post-stroke fatigue can feel impossible to explain. David’s story reveals the hidden exhaustion behind recovery and how hope slowly returns.

Support The Recovery After Stroke Podcast on Patreon

Banksia Tech Links:

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Website

Highlights:

00:00 Introduction and Acknowledgments
06:37 The Discovery of PFO and Its Implications
09:20 The Day of the Stroke
11:16 Emergency Response and Delays
17:00 Initial Reactions and Miscommunication
25:23 Post-Stroke Fatigue and Recovery Challenges
27:28 Sensory Overload and Sensitivity
31:35 Emotional and Physical Challenges
37:01 The Journey of Recovery
41:13 The Impact of Memory Loss
48:10 Shifting Perspectives on Life
51:50 The Importance of Mentorship
01:00:14 Encouragement for New Survivors
01:11:46 Conclusion and Reflections

Transcript:

Bill Gasiamis (00:00)
Before we get into today’s interview, I want to say thank you to everyone on Patreon who supports this show. You’re the reason I can keep creating this content after more than 10 years of doing it on my own. Your support helps cover hosting costs and keeps these conversations alive for the survivors out there who desperately need hope, clarity and community. I also want to take a moment to give a shout out to everyone who comments on YouTube, leaves reviews on Spotify or Apple, has bought the book

or simply tunes in without skipping the ads. You are helping stroke survivors feel less alone and that matters. Now today’s episode is a powerful one. I’m speaking with David Willick who experienced an ischemic stroke caused by a PFO, a hidden heart condition he never knew he had. What makes David’s story so important is that you can’t see the sensory overload, the extreme fatigue and the invisible deficits that shape his recovery.

If you’ve ever felt misunderstood because you look fine on the outside, but your brain tells a different story, this episode will resonate deeply. Let’s get into it. David Willick, welcome to the podcast.

David Willick (01:11)
I’m glad to be here. Thank you, Bill.

Bill Gasiamis (01:13)
David, what did a normal day look like for you before stroke?

David Willick (01:17)
Well, I had a global role in an internationally ⁓ recognized company. And I actually reported ⁓ into Australia from Canada. So I used to call some of my days bookend days because they would begin at 4.30, 5 o’clock in the morning and go for a few hours and then calm down a little bit.

and I would do my day job with my local people in my own time zone. And then right about 4.30, five o’clock in the evening, Australia would wake up and it would get super busy again well into the evening. And that was my day.

Bill Gasiamis (02:02)
Wow.

David Willick (02:02)
managing a large department and with lots of direct reports. So it was good, it was fun, but I thought it was Superman, I could do it all.

Bill Gasiamis (02:20)
And you probably did do it all for a little while.

David Willick (02:23)
for a little while.

Bill Gasiamis (02:25)
What industry was in?

David Willick (02:29)
It was in the electronics industry.

Bill Gasiamis (02:34)
So then the 4.30 start, was that just to get you going for the day? What was the 4.30 in the morning start all about?

David Willick (02:47)
Yeah, so what that was is working within the convenient time zones of the people that were in Australia. And so it wasn’t every day. It was ⁓ maybe once a week or twice a week, ⁓ but nevertheless. ⁓ And it was just over the years, it just became normal. And that’s just what you had to do. And you just rolled with it. So that was pre-stroke.

Bill Gasiamis (03:17)
What does the family life look like at that time?

David Willick (03:22)
You know, ⁓ we’re empty nesters, my wife and I, so, you know, and very ⁓ open and we did what we had to do. So when the kids were younger, the role wasn’t as demanding. And so I was able to have a fairly decent work-life balance ⁓ before that. But it was only really intense ⁓ for a couple of years before the stroke.

⁓ Prior to that, was less intense and therefore there was a fairly decent work-life balance ⁓ raising the kids to the point where they eventually left the nest.

Bill Gasiamis (04:01)
What were your goals, responsibilities or passions back then?

David Willick (04:07)
goals were, you know, family oriented, ⁓ you know, success oriented, ⁓ both success, you know, with, with home, but success with, ⁓ with, work as well and building a career and moving up the corporate ladder. and, ⁓ and my hobbies, you know, included, ⁓ doing stuff, sports, ⁓ woodworking, ⁓ you know, that type of thing.

Bill Gasiamis (04:37)
end of the interview, hopefully remind me if I’ve forgotten to ask you what success looks like now. I don’t want an answer now. I want an at the end because I imagine it will have changed just a little bit, but it’d be interesting to hear ⁓ what that is. So did you have a sense of your health back then? Did you have an idea of whether you ⁓ consider yourself healthy? Was there any signs of any ill health or potential challenges coming?

up.

David Willick (05:08)
No, there wasn’t. As a matter of fact, I would have annual executive physicals, ⁓ ate a great diet, I thought, you know, ⁓ fantastic, avoided, ⁓ you know, all of the taboo foods. ⁓ I had stopped drinking alcohol a few months before the stroke, because I just felt that it was the right thing to do. ⁓

new food guides introduced and not that I had a problem before, but it was just the new daily recommendations essentially were avoided if you can. And then, you know, as far as I had low blood pressure and borderline low, I had essentially low to normal cholesterol.

⁓ never smoked a day in my life, ⁓ anything. ⁓ and so, you know what I was, you know, after the stroke, when I was in the hospital, they said, you won the negative lottery. was like a one in a million chance you would have this. And cause you had no risk factors, ⁓ for that. And I’m not overweight. ⁓ you know, I’m in the same size pant that I was, ⁓ you know, finishing secondary school way back when.

And so, you know, it was just one of those things. And ⁓ in my case, it was, it ended up to be a PFO or a significant hole in my heart.

Bill Gasiamis (06:49)
Well, that will do it. Yeah. And one of those things can be there forever for some people and cause no challenges. then for some people, it then at some point does cause a problem. Did you have the PFO closed up?

David Willick (07:07)
I did. Unfortunately, it was after the stroke. ⁓ And so I had a catheter surgery, which is pretty amazing. You know, it was day surgery, right? And they, yeah, so you, I checked into the hospital at two o’clock in the afternoon, ⁓ did pre-op at 2.30. And essentially they, they put a camera up your vein in your arm.

And then the catheter with the device goes through the artery in your leg, in your groin area. And you’re completely awake during the whole thing. They’re asking you questions. And in my case, it was a pretty significant hole. So they said that the device that they used to cover the hole was 25 millimeters. ⁓ So pretty significant. And ⁓ they close it.

So it was interesting and I describe it to my friends that it was essentially like, you know, those fruity drink umbrellas that you get when you’re on vacation. It was essentially two of those going up through your groin. And the first one gets pushed through the hole, then gets inflated. And then the second one gets up to the other side of the hole.

and gets inflated and then they torque them down together and that plugs the hole.

Bill Gasiamis (08:35)
Wow, that is stunning.

David Willick (08:38)
And you know what? And then it is stunning. And so two o’clock check-in, pre-op to 30, procedure at about four or five o’clock, ⁓ post-op at about 6 p.m. They get you up walking around the ward of the hospital. If you can do one lap without bleeding, you’re good to go. And I was resting comfortably in my own bed by ⁓ 9 p.m. the same day it was done.

Bill Gasiamis (09:09)
That’s sensational. you know, years ago, maybe not that many years ago, that would have been an open chest procedure.

David Willick (09:18)
Exactly, it really was.

Bill Gasiamis (09:20)
That’s phenomenal. love how far technology science has come. It’s just brilliant that it can be like that. And to hear that, hopefully now the potential for another stroke has decreased even further.

David Willick (09:36)
Exactly. And so now that the PFO has been closed. So now that it’s been closed, they said my risk is decreased significantly.

Bill Gasiamis (09:47)
So on the day, what was the first sign that something wasn’t right?

David Willick (09:51)
You know, it happened in the evening ⁓ as I was sleeping. so first thing in the morning, we had a small dog at the time that required medication, that didn’t like the pill. And so I would open the capsule of his pill and put it in his food. And so normal day, I pick up the capsule because I’m right-handed with my right hand.

I went to take off the other side of the capsule with my left hand and I made three or four attempts at it. And I couldn’t line up my left hand to grab the other side of the capsule. So then I thought, well, that’s really, really odd. Eventually I got it, but it was multiple attempts. And then I decided, you know, let’s make a pot of coffee. And so I reached over for a plastic pitcher that we fill up with ⁓

with ⁓ water to fill the coffee pot and I dropped it. And I had no ⁓ sensation. I couldn’t detect how hard or how lightly I was squeezing the handle of the pitcher. So I dropped it. And after these two things happened, my wife was still sleeping at the time. I woke her up and I said, you know, something is not right. You know, get me to the hospital.

Bill Gasiamis (11:16)
We’ll be back with more of David’s story in just a moment, but first I wanna take a moment to acknowledge something important. If what you’ve heard so far resonates, the fatigue, the sensory overload, the frustration of looking normal when you’re anything but, I want you to know that you’re not alone. David’s experience mirrors what so many stroke survivors go through every day. And the second half of this episode gets into how he rebuilds his energy.

reshaped his mindset and found stability again. But before we continue, I also want to take a moment to thank Banksia Tech for supporting this episode. They’re proud distributors of the Hanson Rehab Glove by Syrebo a soft robotic glove designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it. You’ll hear more about the glove later on. Also go to banksiatech.com.au

to find out more. So what went through your mind as it began to escalate? Can you get me to the doctor? A few minutes ago I could do these things with my hands, now I can’t. Was there anything going through your mind?

David Willick (12:27)
Yeah, at first what went through my mind was, know, did I pinch my neck as I was sleeping? Like, was it because it I felt fine, I was able to walk, I was able to move around, I had no paralysis at that time. In my face, I had no issues. And, you know, looking at it, you know, in 2020 hindsight, it was the beginning of the stroke, it wasn’t an actual stroke yet.

So it was a blood flow restriction. And so I was able to still move. ⁓ But it was, some blood was still getting through. It hadn’t fully ⁓ blocked yet.

Bill Gasiamis (13:13)
Okay, ambulance turns up. ⁓

David Willick (13:16)
No, we actually, we were living in a very remote area. And so we didn’t call the ambulance. And this is where the story takes another turn for the worst. And so we didn’t call the ambulance because I still at this point thought it was just a pinched nerve or something like that. so anyway, so we, my wife drove me to the nearby hospital, which was about maybe a 35 minute drive.

But keep in mind, this is very remote, very almost primitive type of hospital. They were understaffed at this particular hospital. And they had substituted ⁓ the triage nurse with a ⁓ PSW, so just a personal support worker not trained in nursing or whatever.

And after this all happened, I had filed a formal complaint with the hospital and then I was able to get the report. And ⁓ what I learned from the report, didn’t know at the time, but she, the triage nurse, clicked the wrong button on her mouse. Instead of highest priority, she clicked lowest priority. And so I sat there for two and a half, three hours waiting

to be treated in the emergency room. And we kept going up to the nurse every 15, 20 minutes to the PSW. You know, some, this isn’t right. Something’s not right. Other people are coming in and out, other people. Anyway, so when I finally got to see the doctor, the doctor recognized the signs right away and ⁓ he ordered what they call a hot ambulance. So lights and sirens.

all the way to a larger center where they could confirm what type of stroke it was, ⁓ what was happening. So they didn’t have a CT scanner at the small remote hospital that we went to, but he needed the CT scan. I said, just give me the, the, the clock buster drug, ⁓ TPA. And he says, listen, if you’re having a hemorrhagic stroke, this is going to kill you. So I can’t just give it to

And so, but we’ll try to get you there as fast as possible. So guess what happened? I actually, ⁓ through the rural roads and bumping and grinding through in the ambulance on the way to the hospital, I had the stroke in the ambulance. So this is when the blood flow was completely ⁓ stopped to that portion of my brain. So it was the frontal lobe, right side.

⁓ And so by the time when my wife dropped me off at the small hospital and they told her not even, don’t even try to follow the ambulance because we’re going to be going full speed. So when she got and saw me at the larger center, she said, it was unbelievable. It was night and day. My face on the left side was completely drooped. ⁓ I had mobility issues on my left side.

You know, I was significantly worse because the stroke had occurred in the ambulance on the way. I had no sensation whatsoever on my left side. ⁓ The ambulance attendant that was with me, ⁓ you know, had this device. It looked like a sharpened pencil and he was sticking it at various different parts of my left side and I had no feeling whatsoever.

Bill Gasiamis (17:00)
Yeah. Wow, man. I’ve been through all of those tests and all of those scary moments waiting for somebody to take action, to do something. Both from my perspective, I’ve done that to myself by delaying going to the hospital and also then after having an incident while at a hospital, ⁓ sitting on the chair in

⁓ emergency and waiting for somebody to see you is a difficult time. It is such a difficult time. ⁓ Were you, did you have any thoughts, any kind of like this can’t be happening moment? you, were you cognitively there enough to be able to do that?

David Willick (17:55)
Sorry, you froze there for a minute, Bill. Just repeat the question.

Bill Gasiamis (17:58)
Okay.

Yeah. Did you have any, this can’t be happening ⁓ thoughts in your head?

David Willick (18:07)
Yeah, I was floored. just, this can’t be happening. What the heck is going on? And then I’m negotiating at the larger center of, know, give me, give me TPA, give me the clot buster. And they said no, because, and of course it’s a completely different set of doctors. They said no, because you had this in the night and it was more than four hour window. And I said, no, no, I didn’t.

I said there was a restriction. I wasn’t like this. This only happened a half an hour ago. ⁓ But they wouldn’t give it to me. And so there was a little bit of miscommunication between the smaller center and the bigger center. But yeah, so it was disbelief. was how could this be happening? I have a healthy lifestyle. The only risk factor I had for a stroke was stress. ⁓ And everything else was ⁓ I didn’t have.

Bill Gasiamis (19:05)
Yeah. What were you afraid of most at the beginning?

David Willick (19:09)
deficits, right? ⁓ My ability to losing the ability to walk or to use my my hands, you know, physical impairments, cognitive impairments. I didn’t think of cognitive impairments back then. And when it first happened, I was just more focused on I don’t want to be left with any any physical deficits.

Bill Gasiamis (19:38)
Yeah, that’s fair enough. That’s probably how you recognize somebody that’s had a stroke. If you say physical deficits, it makes it quite obvious that person like that has had some kind of a neurological situation. ⁓ but then there’s the invisible deficits as well, which, you know, plague people after a stroke. who was it that first helped you make sense of what had happened? Were, did that take a little bit of time or?

How did you wrap your head around the situation that you found yourself in now?

David Willick (20:14)
Yeah, so ⁓ I was in the hospital for six days and getting CT scans and MRIs and meeting with the neurologist and the doctors there. And I was in the stroke ward, so there was other peers. ⁓ And then there was the ⁓ physical therapy and occupational therapy. ⁓

sessions that I would have. And so I guess the, you know, everybody was pleasant and nice, but then, you know, working with the neurologist at the hospital, I guess he was more the realist. And they said, Listen, sir, like, you know, I was a little bit making light of this, you know, it was, you know, I’m just gonna bounce back and I’m gonna be fine because the the

The loss of feeling and the complete loss of feeling on my left side only lasted, I would say, for about 36 hours. And then the feeling came back. But my deficit was fine motor skills ⁓ with my left hand. and so

I thought, you know, just another day or so and I’m going to get all those back, right? And so that’s my philosophy at the time. And then it wasn’t until meeting with the neurologist at the hospital that put it in perspective. And they said, he said, listen, this was not a small stroke. You are going to have deficits. And he said that on a scale of one to 10, this was about a 5.5.

Bill Gasiamis (22:07)
Thanks

David Willick (22:09)
So

he said, you’re awfully lucky that this fine motor skill is your only physical deficit, but I guarantee you there’s gonna be deficits from this. And he was right. He was right. But I was incredibly determined, determined to, ⁓ had almost like a perfect life beforehand, right? Everything was going well.

you know, perfectly and all this and I was determined to get back to my near perfect life as fast as I possibly could. So the occupational therapist, they showed me where the self help table was. ⁓ And when I wasn’t in my room, I was ⁓ I was at the self help table going through all these things. So I would have the formal ⁓ occupational therapy for

with a therapist for an hour a day, but I would work at the self-help table for two to three hours before my session and two to three hours after the session. Like what else do you do? You’re in the hospital, you’re locked down, right? So I was always at that table and working through that, which really helped.

Bill Gasiamis (23:28)
That’s exactly my point, the theory as well. was in rehab. My left side was numb. I had to learn how to walk again, use my left side ⁓ motor skills were off. ⁓ The muscles in my leg were weaker or didn’t weren’t activating so they, my knee kept dropping. I couldn’t stand up and, but I was experiencing fatigue, a lot of fatigue and

I’d go to rehab, we’d do the hour in the rehab hospital for whatever day that was. Sometimes it was in the pool, sometimes it was in the gym, sometimes it was playing video games. And then I would come back and have a bit of a nap or a rest and kind of recuperate. But then there might be some time, quite a lot of time between the next session. So I would imagine, I would meditate and imagine myself walking again.

I would imagine my hand working again. And I imagined it doing those tasks perfectly, as if it was doing them before the deficit. But it wasn’t, in reality, it wasn’t doing it perfectly, but in my mind, I was running the program for perfection of the walk and using the arm, so that the neurons that are firing off in my head

⁓ then hopefully have something to remember and recognize when I’m going through the physical part of the recovery. And then I was watching YouTube videos of people ⁓ and neuroplasticity and about stroke recovery and about all this kind of stuff. And I was just trying to find as many different ⁓ resources to just complete the

recovery picture, even though it was only an hour or two a day, physically, it was maybe six or seven hours in total because the rest of it included all these other little bits and pieces. And I think it helped tremendously because instead of just sitting there being bored, it made me feel like I was contributing to the recovery more and more. And that was what I think got me through the one.

probably the five weeks that I spent in rehab.

David Willick (25:59)
And that’s awesome. And that’s along the lines of what I was doing as well, just really pushing the envelope to, to visualize yourself, you know, back. ⁓ There was a, I’m an engineer. so there was this, you know, rector set toy type of thing at the occupational therapy. And I was, I was just so focused on

you know, these small nuts and bolts and being able to do this again, because I like tinkering with machines and, know, on the side and, and it was so important to me to have that back to, to not lose that and what I used to do. And my, manager sent me this book and it was called my stroke of insight. And it’s a very, yeah, exactly. And, and I, I found that.

Bill Gasiamis (26:52)
You’re popular.

David Willick (26:59)
fascinating and it was very helpful for me to read through that and and you know it taught me a lot and it also taught me just you know when your body says rest ⁓ rest and and I had tremendous amount of fatigue and so when people would look at me they would say well you you look normal you know you don’t have that deficit but they didn’t realize how hard it was and how much I was struggling and and actually

And during the first, I would say two months after getting out of the hospital, had two periods of 48 hours where I slept for about 44 of the 48 hours. I would wake up and maybe have a little bit of food. And then I would look at my wife and I’d say, you know what?

Bill Gasiamis (27:47)
tomorrow.

David Willick (27:58)
I feel really tired again. And then I was asleep for like another 10 hours and get up for 10 minutes. then, and then, you know, we’ve, my wife phoned the hospital and she said, is this normal? And said, just let them get as much rest as, as, as he needs. it has, it was almost like my brain became like an infant again. And when you’re learning so much and you’re trying to rebuild so much,

you require a lot more sleep. And so the fatigue, yeah.

Bill Gasiamis (28:29)
It is,

I was going to say it’s a great analogy. Your brain is becoming an infant again and it needs to heal and recover. And sleep is one of the most critical things that you need for recovery. Without sleep, then those neuronal structures cannot, ⁓ they can’t become stable and they can’t stay attached and ⁓ they just disappear. So you need…

as one of the key ingredients to the physical recovery, you need to sleep. That’s the next stage of the physical recovery so that those neuronal patterns can stick.

David Willick (29:13)
Yeah, absolutely. And, and so I’ve respected that and I, and I never, I never tried to force myself to, ⁓ to stay awake when my body was telling me I needed to sleep. another thing that was really, you know, weird or, or interesting in my case, every stroke is different. But when my, when my sensation came back on my left side,

it came back in a hyper way. And so if I say before the stroke, was a hundred percent. And then, you know, at the first 36 hours or so it was zero. When it did come back, it came back like 125%. And so it took me six months to have a warm shower again, because even warm water felt scalding to my skin.

absolutely scalding. And so it was it was almost like a heightened sensitivity on the on surface of my skin. It was really

Bill Gasiamis (30:20)
What about cold?

I have the same issue on my left side, over sensitive. ⁓ The wind on catching the hair on my arm hurts. The hot water, I don’t know whether it’s warm enough or cold enough. I can never tell because half of my body’s feeling good. The other half’s not feeling the best. Sometimes I perspire on just half of my face or body.

Do you have similar kinds of things as well?

David Willick (30:53)
No, for some reason it wasn’t the cold so much and it was the heat. And so I would take ice showers only because anything warm was scalding on my left side. And so I got used to just taking ⁓ cold showers, but I never had that, ⁓ the extreme, like my right side just seemed to adapt.

you know, be okay with the cold. wasn’t like I was, I was shivering. It was more sensation. The heat was, it was a big deal.

Bill Gasiamis (31:30)
What was the hardest challenge to overcome physically or emotionally?

David Willick (31:35)
⁓ It was the exhaustion ⁓ associated with complicated tasks. It took me a year to learn how to drive an automobile again.

And not to say that I couldn’t do it, I could do it. But driving for five minutes or 10 minutes would cause me to need to sleep for hours. All right? And the best way to describe it is when I was learning how to drive again, and

all I’ve driving for decades and all the normal ⁓ driving ⁓ that had become ⁓ automatic to me is almost like my automatic part of my brain was no longer there. That’s where the stroke was. And so everything became very manual.

And let me describe it with a bit of an analogy. So when I first started driving again, I lived in a small remote area with only one stoplight in the whole town. And so as I’m approaching the stoplight and the light is red, there’s a truck in front of me. And they say, OK, my brain’s telling me, OK, I must apply the brakes. But there’s a car behind me. But I can’t apply the brakes too quickly.

Otherwise I’m going to get rear ended. If I apply the brakes not hard enough, then I’m going to hit the end of that truck. So at what point in time and, that mechanical thought process was there on every observation. And so to this day, you know, three and a bit years later, driving in acclimate, ⁓ weather conditions still

makes me more exhausted than anything else, right? So if it’s raining, if it’s dark, if it’s snowing and I’m driving and the noise associated with the car, I had a real issue with noise. And ⁓ for the first six months, I had to wear noise canceling headphones and sunglasses even inside the house because any noise was just… ⁓

It was just mind boggling. And I remember going to a restaurant the first time after a stroke and I was starving. I was really hungry and I went out with my wife and our two closest friends. it was like my brain was trying to understand everything that was happening in the room. Every single conversation at every single table, I was trying to understand and I was trying to just

And I couldn’t shut out background noise. And I was just trying to understand it. And so after about 35, 40 minutes, I didn’t even touch my meal. I said, I can’t do it. I’m too tired. I need to leave. so I had to leave. That’s what it was, exactly.

Bill Gasiamis (35:05)
It’s very common and I still get sensory overload. Right now in front of me, there’s a bright light. You can see it reflecting on my hand. And it’s necessary because of, you know, what you hear about recording videos and all that. There’s certain things you have to do to make sure that the lighting is amazing and you look fantastic. And on this side, there’s another bright light. Exactly. There you go. There’s that bright light there. And the challenge with these lights is that they are the widest of the white.

lights and in that spectrum, even on a cloudy day where the sun is not appearing, but it kind of is causing that real bright sort of experience, I get headaches. So I have to record a podcast interview every time with two lights that are going to cause me mild discomfort while I’m discussing it and then a little bit of time to recover afterwards. I’ve got some

noise-cancelling headphones, I take them on the airplane, I take ⁓ them if I go to a concert or somewhere loud, and I just put them in just so that I can just get a little bit of chill time and I can enjoy the space because I used to avoid going to those events because it was too hard. So that helps. it’s one of the things that has sort of lasted the longest for me is that light.

sound sensitivity, but it is lesser than before. So it doesn’t happen as often, except if it’s a cloudy day. If it’s a cloudy day, it’s happening all day. And there have been moments where in the house as well, I’ll have my sunglasses on during the day. And at night, there’s no lights above my head. It’s all dark above my head and we just have night lights in the corner. So very common experience.

one of the ones that is the most manageable for me. It’s one of the ones that I can manage quite as a pair of sunglasses, thankfully for the noise canceling earphones and then ⁓ changing the lighting.

David Willick (37:20)
Right. Yeah, no, it’s, it’s, it’s hard to describe to anybody that hasn’t been through the experience. To this day, I still have difficulty listening, listening to some music, especially if it’s, it’s like music in the car. I can’t do it yet. And ⁓ it’s just because there’s too much going on. I remember my first Christmas, post stroke my first Christmas.

And my daughter had background music, Christmas music on in the background. And the chatter in the foreground and the music in the background was too much. So I had to ask her to shut that off. But I’m better now. I’m better, but it still adds an element of exhaustion.

Bill Gasiamis (38:10)
If I’m in the car early in the morning and the music is off, it’s way, way better and there’s no radio. It’s way, better than if it was on. And I’ve just become more recently aware that, the radio is not on and there’s no additional noise. And that’s a better experience while I’m driving and focusing on the road. So that happens quite often now. As the day progresses and

I think, you know, my brain comes online or I wake up more or I’m not sure what the word is. It gets a little better. But then if I’ve had a big day and then I’m tired at the end of the day, then it’s better to have it off. ⁓ That’s fascinating. Did you have a moment when things clicked for you and you kind of felt, my gosh, I’ve improved here. I’ve got better here. I found myself in a situation where I wasn’t the most aware of my…

improvements somebody else had to tell me and at one point in the communication recovery ⁓ speaking and that the my psychologist was the one who brought it to my attention did you have ⁓ a aha moment like that

David Willick (39:25)
I did actually. ⁓ what I did, again, being a scientific person, I kept a journal. And I kept a journal of what I was doing today and what worked, what didn’t work. ⁓ And then because I was dealing with a little bit of depression at the time as well. ⁓

And I found what was helpful for me was just to record and keep a daily journal on what I actually did do. And so then I would look over the list at the end of the week and I’d think, you know what? This stuff is, you know, I’ve definitely improved. And, you know, at the very beginning, just little things.

Like if something went wrong, it would send me down a downward spiral, sometimes for an hour, sometimes for two days. And, and I just, it was hard to get out of that. Say for example, I, I lost a key and I know I’m going to find this key and I know it’s somewhere in the house, but, I lost it. And so a downward spiral and, and that, I guess the aha moment.

was when I started reviewing things and realized like, you know, these little things that used to trip me up all the time, you know, they’re not tripping me up anymore and I’m able to do it. And I was able to be less bothered by this, which was helpful.

Bill Gasiamis (41:13)
Yeah, had moments where…

I went to the, when I first started driving again, I went to the local shopping mall, what we call the shopping center. And I parked the car and then went and picked up the things I needed to pick up for the dinner, the dinner that night. And then I went to find the car and I couldn’t find the car. I had no idea where the car was. And I was walking around the car park.

for ages and ages. And it rang my brother at one point. I said, I think he rang me. What are you doing? What are you up to? I said, I’ve just gone to the shops and I went and bought some things and I’m looking for my car. I have no idea where the car is. Just cannot find it. I was more, it was more a what the heck is going on moment. Like it was more me going, this is so strange. This is so bizarre.

I have no recollection of where I parked the car, which level it might be on, which wing of the shopping center it be on, I had idea and just kept walking around. And then eventually, I don’t know whether I fluked it or I just stumbled on it what happened, but I had the, oh, okay, there it is. And I got in the car and I could, it wasn’t an hour. I don’t think I was looking for an hour, but it was way longer than say 30 minutes. And it was just so.

interesting for it to be gone. And when my memory came back,

I couldn’t remember, for example, who came to visit me at some point. And even ⁓ about a year ago, I bumped into a friend of mine who said, I came to visit you when we had lunch, et cetera. And I saw that is not in my memory at all. Like, I believe you, but I just cannot recall it. And then that started to get better and I started to remember ⁓ things and I kind of felt much better about it.

and also speaking. So I would start a sentence and then forget in the middle of the sentence what I was talking about. And my wife would go, where’s the rest of the sentence? And I’m like, I don’t know, it’s gone. I’ve got nothing to say.

David Willick (43:35)
interesting. You know, I had I didn’t have those exact issues, but I had an issue with repeating myself. And I would, I would forget completely forget that I had just explained something to somebody. And then, you know, 30 minutes would go by and then I would, I would explain it all over again, or I would ask the question all over again is that what we just covered this, you know,

30 minutes ago as it changed and I said, we did, you know, I didn’t have any recollection of the prior conversation. So, you know, the repeating myself got better, you know, over time, but I didn’t recognize it.

Bill Gasiamis (44:21)
Mm-hmm. Yeah, that’s the thing. That’s the part of it. You don’t know what you don’t know because Yeah, so it’s not there anymore the same way that it was before a little bit earlier. You mentioned depression 33 % of people who have a stroke roughly will experience depression of some kind Was your depression kind of based around your

the changes that had occurred to you and how you were dealing with them. Was it a ⁓ mental health type issue that you, something that you couldn’t grapple with? Do you know what was at the bottom of that?

David Willick (45:02)
think it was just a kind of a temporary, a temporary.

event that or that I went through for a few months where, little tiny things like just any little, I would have little sparks or little, little events that would happen. mentioned the key that I lost and there was a couple of other things and I, and I think I would just get so down on myself for being injured. And that was essentially

the source of the depression. And so I was never clinically diagnosed as depressed. I never had to take medication for depression, ⁓ but it was just something I had to be aware of. And I’m so lucky to have a loving family and a loving wife that ⁓ was with me every step of the way and ⁓ really guiding me and helping me through this.

you know, highlighting the things that I could do now that I couldn’t do yesterday type of thing. And another thing that was really difficult for me was, you know, again, as a scientific person, I, if you break your arm or your break a ball, then you know that, you know, week, week one, you’re going to do this and week two, you’re going to do this and week three, you know, by end of week six, maybe week seven, you’re going to be all set, right? What

what I couldn’t understand and I had no, I couldn’t even fathom was the nonlinear recovery of this. You you’d have two or three days in a row where, my God, I’m better today than I was yesterday and I’m better, you know, I’m going to be better tomorrow. And then by next week, I’m going to be really, you know, pretty good. And that linear recovery was completely wrong. My recovery was completely nonlinear.

It was like looking at a 30 year chart of a stock market. Yeah, eventually, yes, you you’re going in the right direction. But boy, boy, there’s some rough days down. That’s for sure.

Bill Gasiamis (47:22)
Yeah, that is a great analogy. those, ⁓ that little, those moments of sort of feeling depressed and down, did you ever feel like giving up? Did they get to that? How ⁓ deep were

David Willick (47:36)
never

really got to that level. No, I never really got to that level, but there was a few times where it would get close and then I would just kind of talk to myself and just say, okay, just take a deep breath and one day at a time type of thing, one day at a time. But ⁓ it was a few dark days. But like I said, with a good support network around, was good. ⁓

Bill Gasiamis (48:02)
But,

⁓ so how have you changed as a person since the stroke?

David Willick (48:10)
Well, I guess I’m, I’m a lot more appreciative of health. You know, there’s always that, you know, you, your focus is on, you know, career or your focus is on ⁓ building wealth and all of this stuff. And you know, building, you know, going higher and going faster, you know, doing this. Now I’m

I’m not so worried about those things. And ⁓ I’m very fortunate to ⁓ work for an awesome company. And ⁓ so I took six months of short-term disability, and then I did an additional one year of long-term disability.

And then I went back to work in a part-time basis and I had a gradual return to work plan. And so it started off at like six hours a week and worked my way back to full time over the course of I’d say eight weeks. And when I hit 20 hours per week, I didn’t think I was going to make it. I really didn’t.

because I needed morning and afternoon naps at that point. so, you know, and anyway, and I eventually pushed through it and I used the analogy of a ceiling. so when I was at that, you know, 20 hour week, I was banging up against the ceiling.

and then I was resting, listening to my body and resting. And then I would bang and it would hit the ceiling again and then resting and then bang, hit the ceiling again and then resting. And then over the course of multiple weeks, my wife and I looked at each other and said, my God, your ceiling is so much higher now than it used to be. So.

even though it was painful, even though it was slow, I think for me and in my case, like I said, every stroke is unique. In my case, going back to work was one of the best things that I could have done. And it really pushed my recovery from I would say 65 % all the way up to like 95%.

And then I guess this is long way to answer your question in that, do I aspire to be, you know, the CEO of the company? Absolutely not. Absolutely not. So, you know, I’m kind of in the last role of my career phase right now, and I have no aspirations for further career growth. My whole point now is knowledge transfer.

And how can I take 35 years of industry experience, 35 plus years of working with people? And how can I mentor younger people and transfer as much knowledge as I can for the relatively short time that I’m going to be still working?

Bill Gasiamis (51:50)
I love it. That is sensational. And then long-term, you can write a book.

David Willick (51:57)
Perhaps, or maybe start a podcast.

Bill Gasiamis (52:00)
Wow. Even better because I am not an engineer and I could come on the engineering podcast and talk about stroke just because I know you and that would be fantastic.

David Willick (52:14)
It sounds like a great collaboration for sure.

Bill Gasiamis (52:17)
It would be. And that’s the beauty about podcasts is actually, ⁓ it’s a forever. It’s evergreen, right? So you record the episode, you put it on YouTube job done. You don’t have to worry about it anymore. And you don’t have to worry whether anyone watches it or not. You don’t have to worry what people think about it or not. And if you want to, you can interact with people and all that type of stuff. ⁓ it is one of the best ways to get a deep.

conversation occurring about a topic that you’re interested in and the other person is interested in. And now we have the means. We don’t need a studio. You can just do it from your bedroom. This is a little studio. It’s in my garden and it’s like a garden shed and it’s painted black and it has some sound proofing type of acoustical kind of treatment. And that’s about it. And a $400 microphone and a computer and you’re done.

And now if you edit it, well then you can learn about editing. Now you’re gonna have time on your hands and that’s gonna be perfect. So there’s this, ⁓ and even for me, I was a painting contract, I still am, still have a painting company. And the boys are working at the moment and things are getting managed and I’m recording an episode. But what this sort of shift in technology has enabled me to do.

is find new opportunities, new skills, ⁓ develop new skills and meet people from all around the world, create a community that was never there before, record 370 episodes. And then as a result of that, a book, speak publicly about the topic that I’ve become interested in. And it’s all doable simply because you no longer need to get into the news ⁓ studio. You no longer need to have ⁓

a radio ⁓ contract. You can just be you and you can get it out there and it’s very, very rewarding. It is just amazing how rewarding it can be. So I would encourage you to contemplate all of those opportunities. And now what’s great about ⁓ this is that

If you need help to do it, you can reach out to so many different people to find help as to what you’re lacking or what you’re missing or what need to do. And YouTube is just full of helpful videos about lighting, about recording equipment, about sound, about settings, everything you need to know. there’s…

David Willick (54:56)
YouTube is amazing. I use it in so many things. If I have to rip something apart that I haven’t done before, first thing I do is watch a couple of YouTube videos. It’s amazing.

Bill Gasiamis (55:06)
Yeah.

It was the beginning of my recovery YouTube and it’s and it’s continuing to be because now if I’m interested in philosophy, if I’m interested in any topic that kind of comes across my desk, then I can just dive, dive deeply into it. And from the comfort of my own home, I don’t have to be near somebody to

benefit from hearing them speak about a particular topic. It’s great. And I don’t do well reading, although I like reading. It’s a bit of a struggle. ⁓ So listening makes it way, better.

David Willick (55:47)
Right. Absolutely. So do you listen to eBooks as opposed to reading them? See, I’m still okay with, you know, reading and writing is not an issue. And for me, it’s ⁓ like yesterday, had an incredibly busy day. And, you know, I commuted an hour into the largest city and had multiple meetings with multiple different people.

There was a evening ⁓ social hour and all that stuff and ⁓ a late night and then you come home and it’s like, okay, I’m feeling it today. it’s a pushed it a little bit, but once again, it’s, you know, relatively speaking, it’s very minor and ⁓ it’s just ⁓ something to be aware of. It’s the new me, right?

It’s, you know, again, I’m thankful that, ⁓ you know, that’s, I’m able to do so much and I’m just ⁓ self-aware that when I do push it one day, I make sure that my next day is relatively light.

Bill Gasiamis (57:04)
I love that self aware. I’m the same in that if I have a big Saturday, then Sunday is there’s nothing booked. So still after all the time that I’ve been going through this, you know, since 2012, I cannot have two big days in a row because then the rest of the week becomes really terrible. and then work piles up, then I can’t get stuff done. Then I can’t catch up. And then it’s just a terrible cycle. So

⁓ It’s really important. So if somebody was ⁓ Just coming across this episode, they’ve just had a stroke, what would you like to say to them?

David Willick (57:50)
I would like to say that it’s going to be okay. You know, it’s, you can get better and will you ever be a hundred percent again? Maybe, maybe not, but don’t get discouraged. ⁓ Work at it every day and keep pushing and you’ll see over time.

that you get better and better. You have to know when to push and you have to know when to ⁓ relax and to allow your body to recover and sleep. And that was the hardest thing for me. And it was like, when do I push and when do I relax? And there’s no magic formula.

You have to do it the way you feel. And so for me, I like pushing and then seeing me hit the ceiling and then recover. And then the next day, the ceiling is higher. So for those people that had just had this, there’s hope. There’s ⁓ a future.

you know what, sometimes my outlook is better now than it was pre-stroke, you know, I, you know, I was focused on, you know, climbing higher in that social and in that corporate ladder. And, and now that’s not important to me anymore. And I’m perfectly comfortable, you know, trying to, guess, just mentor other people to, to, you know, take that knowledge. And so you can pivot.

and still get fulfillment and very good satisfaction out of life, ⁓ even though it’s slightly different than it used to be. Another thing for me is I use exercise and I used exercise through my recovery. And, you know, it’s easy to sit on a chair and just sit there for hour and hour. But if I do that for a couple of days in a row, what ends up happening is I start losing ⁓

a little bit of mobility in my left side. And ⁓ so too many days of ⁓ not walking or being, you know, know, stuck in a chair. And so I would say get up and move because then I start walking like I’m intoxicated and staggering a little bit. so I try to get out there and I try to walk, ⁓ you know, at

you know, a good portion every day and get a little exercise. When the weather is not cooperative with that, I have an elliptical in the basement where I could jump on the elliptical for a little while or a treadmill and, you know, just have a walk indoors. And I think that’s really important as well.

Bill Gasiamis (1:01:03)
Do you ever have the, do you ever walk next to somebody, your wife or somebody you know, and find yourself sort of running into them? I do it all the time with my wife when we’re walking, especially if she’s walking on my left.

David Willick (1:01:17)
Yes, I do that. And my wife is very aware of everything. And I also have a voice. And when I first had the stroke, and the best way to describe this is if you had a loose tooth and you’re afraid to swallow it, and you start talking like, you know,

And as soon as I start talking as if I’m trying not to swallow a loose tooth, my wife, 100%, she knows, okay, you’ve pushed it too far. That’s my first sign of being tired, right? And then if I push past that or if I’m not talking, if I start staggering while I’m walking, ⁓ she’ll know, okay, I know you’re pushing it, you’re tired. ⁓

And so see the signs, know your own signs and just respect those signs. And I guess, you know, going back as well, what really helped me was journaling. And if you’ve just had a stroke and you think it’s so, you you’re in despair and whatnot, you know, if you journal and keep a really good track of what you’re doing and you will see that over time.

⁓ You’re doing more and more and you’re having less and less issues. so, and when you’re having a bad day and you’re feeling, you know, you know, it’s, the despair is just too much. Just take a look at your journal and take a look at how far you’ve come and it’ll pick you up.

Bill Gasiamis (1:03:04)
Yeah, that’s a great, ⁓ that’s great advice. So what is there? What do you believe about healing or growth that you perhaps didn’t believe before?

David Willick (1:03:18)
I think that it’s multi-dimensional. so healing and growth, the definition of it today for me is quite a bit different than the definition that would have been three, four years ago before stroke. So I’m more appreciative of the little things. ⁓ And I think I would classify some positive growth

⁓ not just ⁓ in dollars and cents, but positive growth ⁓ is all about mindset now and it’s less about monetary things. And so I like to say that, you know, if you’re thrown a situation and the situation doesn’t change, that’s the situation, the mindset that you take at that situation could lead you way off there.

or way off the other direction. And even though the situation is exactly the same, the mindset that you have looking at that situation could make you really angry, really sad, really depressed, or it could make you maybe appreciative. It could make you pivot. It could make you, you know, perhaps happy, but…

nothing has changed in the situation is on your mindset. And I didn’t really fully understand that prior to stroke, but I guess I’ve had time to reflect and I’ve had time to, to really do some self awareness learning. And, and now I applied that mindset shift more now than I ever have before.

Bill Gasiamis (1:05:11)
One of the cool things that I was taught to ask was, is this serving me right now?

And if you’ve got one of those bad mindset moments that you aren’t aware of and you’re in the spiral, the negative one, the terrible one, and you have the self awareness just to say, is this serving me right now? That’s usually something that can support shifting the mindset in another direction. I’ve definitely done that and found myself being able to decrease the amount of time that I’m in that loop of negativity perhaps, and then change it so that.

⁓ that is less impactful and is it serving me kind of makes me.

David Willick (1:05:57)
wish.

Bill Gasiamis (1:05:58)
It’s a meta position. You have to kind of observe yourself in that situation as you’re looping in the negative way. And then from there, you can see that doesn’t look good. Like I’ve got to stop that. I’ve got to change and shift and get into a mindset that at least is neutral, if not serving me.

David Willick (1:06:21)
Exactly. And it’s just making you more injured or in my case, when I spiral, you know, it’s only harming me, you know, and so I chose to avoid that before it gets too, ⁓ too severe, right? And it’s not easy. It, it takes a lot of practice and it takes a lot of, ⁓ you know, internal coaching, but

you know, once you once you’re able to recognize that first step towards that negative side, and then you take a step back, it’s easier than trying to pull yourself back when you’ve been in it for minutes or hours, you know,

Bill Gasiamis (1:07:08)
Yeah. ⁓ what’s one lesson that stroke has taught you that most people might not understand.

David Willick (1:07:19)
Patience, perseverance, think is, know, buzzwords perhaps before, but nowadays, know, that perseverance, ⁓ you know, we can overcome, the human brain is just, is so amazing and it’s so resilient and just,

to keep going and to have that perseverance to go. And I think that’s one thing I did learn from this experience. And so I remember my nurses and the occupational therapists that I had in the hospital and they said they’d never met a more motivated patient than me. And it’s something about that motivation, that determination, that perseverance

that don’t accept. And I remember going to my family doctor after this and the family doctor, she said something that really infuriated me. She goes, just accept the fact that this is the way you are. This is your new reality. And I didn’t, I was nowhere near in my recovery. And if I had listened to that advice, you know, I would still be stuck at that 60, 65 % threshold.

and nowhere near the 95, 98 % threshold that I’m at now. So perseverance is one thing and determination. those are things that I always had, but I learned. I learned a lot more about myself and about those things that make it really important.

Bill Gasiamis (1:09:09)
Yeah, that new normal thing is really frustrating. I’ve heard it a few times as well. ⁓ And I also heard it during lockdown here in Melbourne, in Australia, during COVID, we had nearly two years of lockdown. saying new normal was such a triggering thing because it came from a, no, you shouldn’t expect anymore. And that’s kind of what I, when somebody said that to me in the past, you know, through stroke recovery,

in the future, anytime I’ve heard that, it’s always been, you shouldn’t expect anymore. And it’s like, rest on your laurels, do less, don’t make any effort. And so what are you talking about, new normal? As if we’re gonna just sit now, we’re gonna, this is gonna be the peak of our existence, we’re just gonna accept everything and then not try for better. And that was really frustrating. And why I don’t do things normally.

You know how there’s some people who do things to prove other people wrong? I’m not that guy. So those types of comments really upset me to hear them from other people because I’m on the journey to achieving, overcoming, recovering, all those things. And what I don’t need is somebody messing with my journey. I don’t want you messing with it. If you’re enhancing it, you’re welcome. You’re on board. Let’s do this together. If you’re not,

Keep quiet and stay in the corner. Don’t come near me.

David Willick (1:10:38)
Yeah, exactly. You know what exactly right life’s too short. And, you know, you can pick and choose who you want to be around you want to be dragged down by by people and or do you want to be lifted up and you know, so we we like to socialize with positive people. And, you know, we like to avoid those people that are always dragging you down, right. So it’s just

And you just, I guess it’s opened my eyes to, we have choices. You know, we have many choices in our life. We have choices about our careers. We have choices about our friends. We have choices about the social things that we can do. And it’s okay to say no, it really is. And, you know, I like to push myself a little bit outside my comfort zone. And, and I think that’s okay. ⁓ As long as it doesn’t go too far.

but sometimes if something’s not a fit or if you know it’s not gonna end well, then it’s okay to say no.

Bill Gasiamis (1:11:46)
Yeah, I agree. And on that note, David, I really appreciate you reaching out and joining me on the podcast. enjoyed our conversation. Thank you so much.

David Willick (1:11:55)
Thank you for having me, Bill. It’s been my pleasure. Thank you.

Bill Gasiamis (1:11:59)
Well, thanks for tuning into my conversation with David Willick. I hope his honesty about invisible fatigue, sensory overload and redefining success gives you something to hold onto in your own recovery. Remember to subscribe on YouTube, leave a review on your favorite podcast platform and share this episode with someone who needs it. These simple actions help push this content out to survivors who are feeling lost, confused or misunderstood. And you never know.

who might hear exactly what they needed today. If you want to go deeper, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s my lived experience guide to post-traumatic growth after stroke. And if you are able to support the show and help me reach 1,000 episodes, visit Patreon at patreon.com/recoveryafterstroke Remember to take the next step in your recovery, no matter how small it feels today. As always, see you in the next episode.

Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus.

Content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator.

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The post David Willick on Life with Invisible Fatigue After Stroke appeared first on Recovery After Stroke.

When life is full of business meetings, celebrations, and long weeks that blur into long weekends, it’s easy to ignore the quiet signals your body sends. For Jason Hellyer, a real estate professional who prided himself on working hard and playing harder, those signals became impossible to ignore the night he experienced an ischemic stroke.

For decades, Jason ran successful property and finance franchises across Queensland. He thrived on achievement, 90-hour weeks, long nights, and the social rituals of beer, smokes, and mateship. Like many Australians, he believed success meant constant motion.
“I lived a life of pleasure, worked hard, played hard,” he told me. “It was the Aussie way.”

Behind the scenes, his blood pressure regularly climbed above 210/110, but he brushed it off. “I felt normal,” he said. “No headaches, no warnings. That was just an ordinary day for me.”

After an evening out with his wife, Jason tried to get out of bed and couldn’t. His right arm went limp, his speech slurred, and his face drooped.
His wife, having watched her own mother experience a stroke two years earlier, recognised the signs immediately. Within ten minutes, she had him in the car and on the way to Sunshine Coast University Hospital.

Those minutes saved his life.

Doctors confirmed an ischemic stroke, caused by a blockage restricting blood flow to the brain. Jason’s business instincts kicked in: stay calm, accept the problem, and act. “Panicking wouldn’t help,” he said. “I just thought, what’s the best way to deal with this?”

Many stroke survivors describe denial. Jason took a different path.
“I knew instantly everything had changed. I’d never drink again. Never smoke again. That decision was made within half an hour.”

That instant acceptance became the foundation of his recovery. He channelled the same focus once spent on business into his health, taking every recommendation seriously, and leaning on his wife’s calm guidance.
“Business teaches you: if there’s a problem, face it. Don’t pretend it’s not there.”

The first weeks were filled with frustration, facial droop, weakness on his right side, and slurred speech. A self-described “constant singer,” Jason struggled most with losing his voice.
“I couldn’t sing in the car or around the house. My wife always said, ‘If you’re singing, you’re happy.’ I felt like I’d lost part of my identity.”

Through steady physiotherapy, speech practice, and daily walks, strength and clarity returned. The droop faded. His words grew sharp again. The business owner who once ran at 100 mph was learning to slow down, and in doing so, he started to heal.

The stroke stripped Jason’s life down to essentials. What remained became sacred: his family, health, and peace of mind.
He quit alcohol and cigarettes immediately, lost 24 kilograms, and developed a daily routine around movement and mindfulness.

His mornings now begin before sunrise, cycling, stretching, or walking instead of nursing a hangover. He describes his new clarity as “crystal-clear focus, every day.”

“I used to think I was sharp at work. But I was foggy. I didn’t know what clear felt like until I stopped drinking.”

“It’s probably the best thing that ever happened to me because it made me change.”
— Jason Hellyer

After years in real estate, Jason now works in the lifestyle and retirement sector, helping others plan peaceful futures, an irony not lost on him.
He and his wife recently bought a small farm near Dubbo, where they’re renovating a 110-year-old cottage. Their goal: a slower, healthier life surrounded by nature.

“It’s about choosing lifestyle over labels. I don’t care what car I drive anymore. I care about mornings, quiet, and the people I love.”

Once Jason’s physical strength returned, he began testing his limits again, but this time for meaning, not ego.
He started cycling: 10 kilometres, then 25, then 50. Eventually, he completed a 700 km ride through the Pyrenees on the Camino de Santiago. The challenge reignited his belief in what was possible.

That led to an even bigger dream – paddling the entire length of the Murray River, Australia’s longest. Alone and self-sufficient, Jason joined a short list of only 500-odd people to complete the journey.
“It was my apology to my past self,” he said. “I wanted to prove I was capable and grateful to still be here.”

Jason’s six children were his anchor. The stroke made him see that being a father wasn’t just about providing; it was about presence.
“When it happened, I realised I’d have traded everything I owned just to have them in the room with me,” he said.

Today, he and his wife share early mornings, simple meals, and long conversations, things they used to rush past. “We used to chase what doesn’t matter,” he reflects. “Now, it’s peace over prestige.”

When asked what advice he’d give someone newly diagnosed, Jason didn’t hesitate:
“Choose the right mindset. It’s easy to feel defeated, but recovery starts with small goals one at a time. Recognise when you’re slipping, talk yourself around, and remember why you’re doing it.”

For some, that might mean physiotherapy milestones. For others, simply walking an extra block. Each step matters.

• Acceptance beats denial: Facing reality early gives recovery momentum.
• Lifestyle matters: Quitting alcohol, losing weight, and staying active can reshape outcomes.
• Mindset drives healing: A problem-solving attitude turns fear into focus.
• Purpose sustains growth: Transformation lasts when it’s anchored in gratitude and family.

• Get The Unexpected Way That a Stroke Became the Best Thing That Happened — Bill’s book on finding post-traumatic growth after stroke
• Join the Recovery After Stroke Patreon community for survivor support, Q&As, and coaching access

Before we wrap up, a huge thank-you to Banksia Tech, proud distributors of the Hanson Rehab Glove by Syrebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it.

Jason Hellyer’s story isn’t about loss; it’s about rediscovery. His stroke forced a hard reset, stripping away noise until only what mattered remained.
Through discipline, humility, and purpose, he shows that overcoming ischemic stroke through lifestyle change isn’t just possible – it can open the door to a richer, calmer life.

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 an ischemic stroke, Jason Hellyer transformed his life — quitting alcohol, losing weight, and finding peace through change.

Highlights:

00:00 Jason Hellyer’s Lifestyle Before Stroke
06:21 The Impact of Stroke on Jason’s Life
13:47 Acceptance in an Instant
26:24 Losing My Voice, Losing Myself
35:37 A Reality Check That Redefined What Matters
45:21 Overcoming Ischemic Stroke
52:37 Choosing the Right Mindset: Small Steps, Big Recovery
56:18 Finding Strength, Joy, and a New Identity After Stroke

Transcript:

Bill Gasiamis 0:00
Before we dive into today’s inspiring story, I just want to thank everyone who has taken a moment to make this show possible. To all our Patreon supporters, your contributions now cover some of the hosting costs after more than 10 years of doing this solo, and to helping me keep producing content for stroke survivors who need guidance and hope. To everyone tuning in on Spotify, YouTube, Apple podcasts, thank you for commenting, reviewing and sharing, and to those of you who picked up my book The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 0:32
You’re helping spread the message of post stroke growth now a big thank you also goes out to Banksia tech, proud distributors of the Hanson rehab glove right here by cerebo. This glove helps stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, you’ll hear more about it later in this episode. All right, my guest today is Jason Hellyer, a Queensland real estate professional who built his life around work weekends and plenty of beers, until one night, everything changed.

Bill Gasiamis 1:04
Jason suffered an ischemic stroke that turned his entire world upside down. What followed was a total lifestyle transformation. He quit drinking and smoking overnight, lost 24 kilos and discovered a new sense of purpose. He’s living proof that sometimes the biggest setbacks can become the star of something better. Let’s jump in. Jason Hellyer. Welcome to the podcast.

Jason Hellyer 1:29
Thanks for having me, Bill.

Bill Gasiamis 1:31
G’day, mate.

Jason Hellyer 1:33
G’day.

Bill Gasiamis 1:34
I love it. Another Aussie. Tell me a little bit about what life was like before stroke.

Jason Hellyer 1:42
I lived a life of pleasure, worked hard, played hard. So I Yeah, it was worked in the property industry. So it was always a, you know, the grind Monday to Friday, and on weekends, it was play up time, so many a beer and a celebration had often and for decades. So it was a, not a smart way to live, but it’s how it was, and that was part of the, I suppose, the year we grew up in. It’s just how we did it. You know, it was just worked during the week of play out on the weekends. And I said I got a gold medal in that dude.

Bill Gasiamis 2:24
That’s not too bad. I mean, if you can get a gold medal, but always in peak performance sort of sports, you need to know when to get out.

Jason Hellyer 2:36
That’s right, yeah. And I didn’t know no first one there, last to leave, always.

Bill Gasiamis 2:41
So what was your role? What type of role did you play in the property industry?

Jason Hellyer 2:46
So, I owned real estate franchises, and I also had finance franchises, and I also worked. Once I sold those, I moved back into working for a large company based on the Sunshine Coast, and did that for quite some time. And I think that role, when the responsibility of business was taken away from me, I didn’t have to be so on hand. So to speak, it allowed me to sort of a bit more freedom and play up a little bit more so to speak.

Bill Gasiamis 3:20
So what’s behind that whole I’m going to run through two businesses and have all these branches and all this stuff, like, what’s behind it from a like, psychological perspective? So, yeah, I want to try and understand, like, how do you go from being just a regular kid at school to building a career? That means that you’re working probably 90 100 hours a week on multiple businesses and tracking all this stuff. What is the purpose and point of it?

Jason Hellyer 3:49
I think it was the Australian brainwashed way that we have, that we believe that you need to go out there and succeed and buy and have all these assets and to build this and to be successful in everything you do, and that’s where that was the driver, at the end of the day, to prove people that prove to people that I could I was capable of these things. And I think about it often that that question, what you’ve asked, you know, why did I go so hard? And it was, I was always a sort of an overachiever.

Jason Hellyer 4:14
I mean, coming through school, I was always that was a very handy sports person and did so at a pretty high level. Then that sort of moved on to my career. And so as always, once I sort of found out what direction I wanted to go in the property industry, it’s sort of a well, given salesperson was one stage, and I had to be better and go to the next stage, and I had to go into ownership. And then once I got the ownership of a franchise, how could I make that bigger? What can I go from there? And then it was into was into finance, and just kept building.

Jason Hellyer 4:45
And once you, once you’re in, it’s sort of, it’s all consuming, you know, just you sort of, when you’ve got employees to look after and, you know, and families and things like that. It’s just, there’s no way out, you know, do you found one, though?

Bill Gasiamis 4:59
Yeah, yeah. It found you. It did. Yes, yes. Do you have a moment where you go? What the hell am I doing?

Jason Hellyer 5:07
All the time, yeah, yeah, all the time, back then. But as I said, I was you’re so far in you can’t just step back, you know, not something you can just walk away from, because you’ve there’s so much responsibility buying for yourself, but for other people as well, you know their families and the people you’re paying, and everyone’s who’s invested in your business, or you know your career and what you’re doing, it’s a multiple domino effect of any decision you make.

Bill Gasiamis 5:37
So, how many years were you going hard, like a few decades, but how long before you got sick that? Were you doing that kind of work or that?

Jason Hellyer 5:48
Yeah, but listen, probably, there’s probably 10 to 15 years of business ownership, and then I got out of that, and we moved back into more of a, I suppose, an employee type role or work for a larger company, and that was about probably seven years of that.

Bill Gasiamis 6:06
Okay, so probably two decades, going real hard.

Jason Hellyer 6:10
Yes, yeah, definitely, and it was, yeah, we definitely two decades, maybe even A little bit longer, to be quite honest.

Bill Gasiamis 6:21
Yeah. And what about the day of the stroke? Like, what was that like? Was there any sense that there was something about to go wrong? Any previous warnings that, in hindsight, you go “Oh my god, that was probably.”

Jason Hellyer 6:36
I think it’s got a hereditary high blood pressure in the family. It was, you know, and it was something I hadn’t been treated for, but I was very I was a bit blase about tablets and things like that, and I sort of didn’t take it too seriously and to my different, of course, but it was something that’s been there. I mean, I’ve been in, I was in the doctors once it was a reading of over, like 210 over 110 sort of thing, you know. And he was to me, I felt normal. Didn’t feel there’s no headaches, no nothing.

Jason Hellyer 7:09
That was just an all day for me. And so that was always there. It was just, I think the night had happened. It was late, and the wife and I had been out for a few drinks, and we’d come home, and I was lucky enough that she’s pretty switched on with it all, and she noticed straight away what was going on. I tried to get up out of bed to go and go to the bathroom, and I couldn’t get up, couldn’t get a hold of the bed, and she looked at me instantly and just said, you’re having a stroke, Jason, and she had me in the car in 10 minutes, I already in the back of my mind.

Jason Hellyer 7:45
It’s quite weird at the back of my mind, I already always had a precautionary hit in the cupboard of aspirins, so if anything ever went wrong, would be so I sort of, I think deep down, I knew that they would catch up with me one day, I suppose. And I remember chewing on two aspirin straight away. She got me in the car and then down to Sunshine Coast hospital and straight in, yeah, and what kind of a stroke was it? Is it a I always have trouble pronouncing it ischemic. Pronounce it man, well done. Yeah, I practice that.

Bill Gasiamis 8:23
The only trouble with strokes is you don’t know what kind of stroke you’re having. So aspirin would have been a disaster. Because if you had, of course, yes, if you had a hemorrhagic stroke, that could have been terrible.

Jason Hellyer 8:38
That’s right, yeah. In hindsight, I had no idea.

Bill Gasiamis 8:41
Yeah, for a heart attack, I think they recommend, you know, chewing a couple of aspirins if you’re feeling chest pain and all that kind of stuff, yeah, thins the blood and helps her flow better. But for stroke, the best thing to do is nothing.

Jason Hellyer 8:54
Yeah, and all this education over now, afterwards, beforehand, I just decisions made back 20 years.

Bill Gasiamis 9:02
So were you a smoker and a drinker?

Jason Hellyer 9:04
I was one of those people who smoked when they drank. I wouldn’t smoke at all. Didn’t even think about it, but as soon as I had couple of beers, it was a it was on for young and old. Yeah, all the above, you know. And I love to, you know, I love to be here. I love the boys, and it was going out for and having a good time, and it was just, and I was a social I wasn’t a drinker at home. I was a social drinker.

Jason Hellyer 9:32
And that’s just how I was. It was all my life and but in hindsight, Bill, to be quite honest, it’s probably one of the best things that’s ever happened to me. That’s it changed my life. Changed my life dramatically and and only for the better.

Bill Gasiamis 9:50
Yeah, so I agree, because I wrote a book that was named The Unexpected Way The stroke Behind Became The Best Thing That Happened, right? Like, I totally get what you’re saying. Some people do not. Like hearing that they don’t like hearing I understand, yeah, stroke was the best thing that happened to us, because what they see is a different version of that, and they see recovered X amount of years down the track, to a certain extent, right? And they they are not physically like us, and they’re struggling with a lot, lots of other things, and they can’t, that’s right, comprehend that.

Bill Gasiamis 10:21
But what we’re saying is we’re not saying we recommend stroke. What we’re saying is that the growth that came after stroke is the part that was the really good thing about it. We wouldn’t recommend the stroke for anyone. It’s shit, totally shit, and it remains to be shit for many years. And I went through a really hard time for seven, eight years, and it started to get better and better and better, but in the acute phase, my God, like I wouldn’t wish it on anybody, let alone.

Jason Hellyer 10:49
Nah, yes. I certainly didn’t think that for the first six months. But looking back now, I can see that in my mind, it was a, it was a wake up call I needed, you know, yeah, better my life has become after it.

Bill Gasiamis 11:09
We’ll be back with more of Jason’s remarkable story in just a moment. But first, I want to take a second to thank the team at Banksia tech for supporting this episode. They’re the proud distributors of the Hanson rehab glove by cerebo, a soft, robotic glove designed to help stroke survivors improve hand movement and coordination from home, whether you’re early in recovery or years into it, the Hanson glove can help you retrain your hand through gentle, repetitive motion, and it’s being used by stroke survivors around the world to rebuild confidence and independence.

Bill Gasiamis 11:42
If you’d like to learn more, you’ll find the link in the show notes. All right, let’s get back to Jason, who’s about to share how a single mindset shift changed the way he lives every day. Yeah, I will ask in a little bit. I want to just to get my shot around your wife and her response like so she realized something’s wrong. You’ve smashed the couple of aspirins just because. And then how do you get to the hospital? Did you get an ambulance?

Jason Hellyer 12:08
Straight in the car, was lucky enough. We had a near new hospital at Sunshine goes to University Hospital just been probably about three or four years old that stage, and we were only about 15 minutes away. So she was straight in the car, and I was still able to get to the car and get in, straight down, straight into the emergency the lady behind the counter there see me. Instantly, I was straight in, and yeah, into the wards, and doctor see me, and what they did to me, I don’t know, a couple of things went on, and I’ll sort of in a bit of a eight days.

Bill Gasiamis 12:42
And so the fact that she said you’re having a stroke, did that register with you? Or were you just like it.

Jason Hellyer 12:48
Did it did register? Yeah. And I was sort of, I was surprisingly calm in my own mind. I didn’t panic at all. And I’ve been a bit like that during my life. It’s just sort of Right, right? You got a situation. What’s the best way we need to deal with this? And certainly me panicking, and I was probably about 110 kilo at the time, it’s not something my wife needs to deal with, and trying to get me into a car or out of a car and things like that. And just just sort of, I suppose, just did the best I could in that with what I was dealing with at the time. Yeah, what’s my mindset?

Bill Gasiamis 13:23
Yeah, that’s pretty cool. I mean, calm is good. That’s the best way to be because it also decreases the likelihood of you creating your own complications through stress and through anxiety and through all the things that we can do to ourselves so and then when they finally kind of tell you what’s happened, then how do you know it’s a weird one?

Jason Hellyer 13:47
I’ve thought about that beforehand. I mean, I’m very, always very quick to to what’s the word, I suppose it’s to accept what’s happened. You know, I’m not going to go into denial. I This has happened. Now. I need to sort out, how do I deal with this, and how do i What’s the best outcome I can make from this? And, you know, it’s always a thing about itself. I was thinking about like, we’ve got six children, and there’s 1000 other people I’m thinking of. I wasn’t thinking of myself. I was like, well, right? I’m just going to listen to everything I say.

Jason Hellyer 14:25
I’m going to do everything I’m told. And I knew my life was changed right at that minute. I knew instantly everything was changed. I knew I was never going to touch another beer again. I knew I was never going to touch another cigarette in that within half an hour of being waking up that decision was already made. So, yeah, I just accepted what it was, and then just had to go forward, for me.

Bill Gasiamis 14:50
It’s really interesting acceptance, right? I imagine when you came to that acceptance, you would have had the deficits already you did experience some pretty soon.

Jason Hellyer 15:00
What were they? Yeah, I was more so the Face drooping and slurred speech and of weakness in the right arm, and I noticed that instantly and also over there over the coming weeks. But I was very lucky that with a little bit of work, it sort of slowly started to come back, and then I’m still, well, you can still see a little Occasionally, you’ll see a little bit of my side here, or have a bit of a drop to it. But apart from that, on the day to day, you probably couldn’t tell if you’re looking at me, but I can tell sometimes when I’ll still get 100% I’ll get the occasional slur.

Jason Hellyer 15:46
I can feel it in me. I can feel it. And as I said, you might not know, but the wife picks it up straight away. Go to bed. You’re dribbling again. So yeah, on the day to day, I know, and it’s the back of my mind, it’s there, but I certainly, you know, as I said, I’ve accepted what it is, and I just will try and build the best life I can around it.

Bill Gasiamis 16:13
Yeah, you know, acceptance is a really, it’s a practice. I think it’s a practice everything way to overcome with it. But I think, you know, correct me if I’m wrong with you did the business, the businesses you were in, help with that, because in business, stuff goes wrong. Things happen, you know, really quickly, and you have to adjust and sort of shift focus. And you also can’t think of solving problems that haven’t occurred for you yet.

Bill Gasiamis 16:43
You just realize that I’ve got to solve each problem as it appears, because I’ll never take action on anything if I try and solve everything before, before it occurs. Do you think the business, business helped you understand like the best way to approach this particular life situation.

Jason Hellyer 17:04
I think that’s a great question, actually. And think about it now you probably were right. I mean, so many times dramatic events would arise and you just had to deal with them. So yeah, I tend to think you’re probably correct there without me knowing it at the time, I think that certainly could be the case.

Bill Gasiamis 17:24
Just defaulted to that business mindset of, okay, well, we’ve got a problem. Well, yes, do anything, but accept that we’ve got the problem, and now let’s find a way forward, and then let’s solve this. And then hopefully, yes, yes, don’t have another one, but if we do, we don’t know what that will look like, but we’ll put the same approach towards it?

Jason Hellyer 17:42
Yeah, I think you’re under percent correct. That’s exactly what, and that’s exactly the mentality.

Bill Gasiamis 17:45
I had when you tried to get out of bed for the first time you’re you had right side weakness. So what was that like your experience?

Jason Hellyer 17:55
Yeah, it was, it was, well, frustrating is a word, I think, because you just, it is because you just, you just don’t when your body’s not working how you want it to work, or your speeches and etcetera. And I was one of those people that always sang in the car and around the house and around the yard and things like, and I couldn’t. And that was one of my, weirdly enough, that was one of my most devastating things to me, is I couldn’t be verbally, who I was, where it was like, always having a tune going on and thinking, I’m Harry Connick Jr. and just having a laugh.

Jason Hellyer 18:29
And I couldn’t do that, and that was wildly frustrating for me. Yeah, I worked on the right hand side weakness that was lucky enough to come back pretty quickly in the first few, sort of four weeks, I suppose.

Bill Gasiamis 18:47
You got heaps of extra neurons around talking and all that.

Jason Hellyer 18:50
Yeah, so I always had, I was always going to be practicing all the time.

Bill Gasiamis 18:54
So, were you an auctioneer?

Jason Hellyer 18:56
No, It’s funny enough. I’m a I’m great. In a crowd of three or four. I don’t know why these people want to listen to me. Nothing worthy of telling you, you know, so that’s been that mindset, but I think I’m getting a little bit better at that with the role I’m in now. I need to do a lot more of it, so it’s certainly something I’m working on what kind of role are you in now? I work for a major ASX, 200 listed company now in the retirement sector or the lifestyle sector for over 50s. Run the sales teams for those.

Jason Hellyer 19:34
So there’s no I haven’t got the stress of property in where you’re dealing with people’s listings and their emotions of homes and the responsibility of that and, and it’s all consuming 24/7 where this is their beautiful homes, they’re there in place. And it’s just talking to people in general. And, and I’m dealing with people in city over 55 bracket, so that excuse, that train going past. So it’s a very. Easy conversation for me. And there’s no it’s an easy role, and I’m well looked after, yeah, yeah, when the House saw themselves, I’m just there to facilitate.

Bill Gasiamis 20:11
Yeah. Okay, so you, you have got, like, a good carrying speaker’s voice, and, you know, just anything that comes out of your mouth will people will pay attention just because of the way that you construct the sentence. People from you. People want to hear from you, just because you have a different perspective, a different point of view. You don’t have to be special or important or anything like that. You just have to have a different point of view, just so that you can create conversation, right? And and I think like you, I think like me, perhaps you love the sound of your own voice.

Jason Hellyer 20:49
Well, you could be right. I’ve told that.

Bill Gasiamis 20:52
hat’s all right. I mean, that’s a good place, right? You go up there, yeah, just have a listen to what Jason’s got to say. You think about it for yourself. And then you just talk. And then you go, shit. Yeah. Did I say that? I really love that, that I said that.

Jason Hellyer 21:05
Well, that was I’m certainly famous for things coming out that shouldn’t So, yeah, but it was my wife who encouraged me to come on and talk to you and to have a chat and to share my story. So I appreciate you letting me do that and and certainly getting practice in talking to you here now, and my public speaking, in a way, in a sense, yeah.

Bill Gasiamis 21:24
Don’t worry about it. This is only going to hundreds of 1000s of people around the world.

Jason Hellyer 21:30
I can only see you at the moment, so I’m happy with that.

Bill Gasiamis 21:33
Thank you. Really interesting, isn’t it, right? So I’ve done a bit of public speaking. That’s one of the first things I did after I had my first two brain hemorrhages, and one of the challenges that I had was constructing a sentence, remembering and all that kind of stuff. And I did that as a volunteer for the Stroke Foundation, and I feel like instinctively, that helped me with my speech, my memory and my recovery in those areas. And the first time I got up to speak, you know, I was petrified, you know, shaking. I was trembling the whole bit, the whole works.

Bill Gasiamis 22:05
But every person in the room was a stroke survivor, so everyone had some kind of a deficit that was impacting them on delivering, you know, their their speech or their presentation, like we only had to speak for minutes, literally minutes. But then it gets better and better, because what you do is you start relating to the crowd from the perspective of, like, I’m here to share something, but I’m going to learn from you as well. So it’s an interactive conversation. It’s less about I’m telling you what to do, and you might think I’m an idiot, but like it’s more about let’s learn together.

Bill Gasiamis 22:43
We will talk and we will learn together. That’s kind of what I get out of it. Now, that being said, that led me to the podcast, and that led me to all the other things that I’ve done, as well as recently for the Royal Melbourne Hospital neurosciences gala bull, they asked me to speak so that I could be the guy who comes on just before the auction start to just squeeze, to squeeze as much money out of the people sitting in the audience as possible, right? No pressure, yeah, and I was, and I was cool, right? Not nervous or anything.

Bill Gasiamis 23:18
But I’ve been speaking now on stage for about 13 years, right? 10 – 13, years, I’m talking about about 12 years. And I was being asked the whole time, are you nervous? You’re okay. You know, other people who, of course, must have been would have been nervous if they had the same job to do or whatever.

Bill Gasiamis 23:38
I’m like, No, I’m all good. I don’t get nervous. But I got emotional because I started talking about my story, and then I finish a sentence, and I was like trying to get through it, and I got through it all, but I had to compose myself. It was I had eight minutes, and I reckon I had to compose myself about five times.

Jason Hellyer 24:00
All right. Wow, yeah, no.

Bill Gasiamis 24:04
they reckon they loved it. They reckon it was awesome. It was the best. They reckon it will, you know, it pulled at the heartstrings. And it doesn’t really matter, like it doesn’t really matter. I’m on the stage just sharing my story and trying to get them to kind of connect with me, and the tear, the tears and the emotion kind of did that more, even though I was trying to.

Jason Hellyer 24:28
Absolutely, would have yeah from the heart, no doubt.

Bill Gasiamis 24:32
Yeah, and I couldn’t control it. Anyhow, got through it and tried to actually not burst into tears between the walk from my table to the stage and from the stage back to my table, like far out, but that’s it, man, it doesn’t really matter. People don’t really judge it that much. They probably give you more credit for being up there and speaking. Then, yeah. Me then, because they probably think that they can’t do it either. Do you know?

Jason Hellyer 25:05
Yeah, we always create the worst scenarios in our own heads, don’t we, you know? Yeah, we think.

Bill Gasiamis 25:10
Are you a bit of a head case or.

Jason Hellyer 25:14
Depends on who you talk to, Bill, yeah, no, no, I’m pretty I’m pretty level. I’m pretty level headed.

Bill Gasiamis 25:23
It’s not that, it’s just in that moment, you just get a little bit in your head about it, and it gets too much.

Jason Hellyer 25:29
I think so, yeah, there’s something I’m working on. I was lucky enough I just My eldest daughter just graduated from university, and she’d worked for 11 years for a doctorate, and she got us a very proud dad moment. She was also asked to do the closing speech on behalf of all the students etc there. And I’ve watched her over the years get better and better at her public speaking, but she’s addressed this audience of all these academics and, you know, and proud parents and other students, etc.

Jason Hellyer 26:01
I was just blown away at how calm and and relative she was to everyone, you know. And it was just, I couldn’t believe it. I was so proud of her, and I just aspire to be able to do that sort of at that level, you know. And it was nothing to her. She was like “Oh, it’s just stepped it’s fine.” I couldn’t believe it. Yeah, it was amazing to watch.

Bill Gasiamis 26:24
Now that’s good. So, you know, going I might not be able to do this anymore. Like, what do you think was happening there?

Jason Hellyer 26:32
Yeah, well, I felt like I’d lost part of who I was, especially with the just the singing around the house. It was such a big I didn’t even realize at the time, and how big a part of that, of me that was just in because my wife always knows he goes, if you’re singing, you’re happy, you know, she always says that to me all the time. And, and the fact that I couldn’t do that, and I couldn’t recall words, and, you know, little bits and pieces like that, yeah, I sort of felt like I’d lost part of my identity. Yeah, absolutely.

Bill Gasiamis 27:00
Was there any like, really difficult moments, really hard, dark moments? Did you get to that stage at all?

Jason Hellyer 27:07
Or, I think, I think how close I come. I came sorry to putting my family, what putting my family through? It was my it wasn’t about me. It was more about them, and what I was putting them through and and said, My, what I haven’t explained to you is my wife’s mother’s had a stroke about two years beforehand, and hers was from falling at work and hitting her head, and she’s in a chair now and has lost a lot of her of complete right side movement.

Jason Hellyer 27:41
So the scare that it would have given my wife would have been, I can’t even imagine. She hasn’t shown anything, and she’s been nothing but supportive, but I know internally she would have been terrified.

Bill Gasiamis 27:53
And you smoked, you drank, it didn’t pay attention to your high blood pressure, and you should have done better.

Jason Hellyer 28:00
Yeah, so self indulgent. It’s ridiculous, you know. And, you know, being a father and a husband is, I know now, is so much more than just providing a house or, you know, the monetary side of things. It’s so much more. And, you know, I was a foolish man, it’s as simple as that. Well, that’s how I feel now anyway.

Bill Gasiamis 28:21
Yeah, do you think it’s about also example, leading by example?

Jason Hellyer 28:25
Grab. Couldn’t absolutely 100% and that’s why my life has changed dramatically from what it was now.

Bill Gasiamis 28:33
Yeah, one of the things that I did was sort of like, create the center of my universe became the kids and the wife, and it was about, like, trying to get better for them. If I got better for them, then I got better. And if I got better for them, then I got better for my parents and my brother and my extended family and everyone was kind of involved in it, but it was them. Initially. I wanted to be a better dad. I wanted to, you know, create a good example.

Bill Gasiamis 29:05
I wanted to be as hard working on my recovery as I possibly can. So I went out of my way. And then, when I wrote my book, The the dedication of the book is, you know, to all the stroke survivors first, and then it’s also to my family. It was like, if nothing else, I hope I’ve set a good example.

Jason Hellyer 29:29
Yes, absolutely. And how did no doubt you have?

Bill Gasiamis 29:34
Yeah, I’m trying to every day. It’s about how to also, how do I kind of read, not drinking? Reading was working too many hours, just having no downtime, no past times, no you know, and the interactions that I had with people were just small, short stints, family and friends, we saw on the weekends, that kind of stuff. But there was really no substance. It’s to my daily life, other than how much jobs I could get and how many quotes I could do, how many clients I could get everyone, how much I could charge them.

Jason Hellyer 30:11
Yeah, true.

Bill Gasiamis 30:15
Was it did you? Are you the kind of person that needed somebody to give them a bit of a lift, some support? I know your wife definitely would have done that. But was there any doctors or any professionals that you came across that kind of said, let’s move forward?

Jason Hellyer 30:35
Actually had a few different doctors I spoke to, and to be quite honest, I had some I’d felt just didn’t even care, you know, and then I was, I was on the search to find one who actually, you know, wanted to listen to you and hear what you’re saying, instead of just, here’s a pill, take the pill. I just wanted someone to, you know, ask those questions that I didn’t think to ask myself. And eventually found one and been with him ever since, and even though I live a long way away now, we have catch ups on the via zoom, etc, like we are today.

Bill Gasiamis 31:07
Yeah, that’s very common people finding that they come across doctors who are really well, difficult to deal with and don’t understand the human side of the That’s right, recovery, and a very disconnected so you had that.

Jason Hellyer 31:24
Absolutely, I did, yeah, yeah. But once I sort of found the doctor I was happy to deal with, or that was, I made a point of letting him know that was my experience and that I would be I was looking for a long term relationship, so to speak, even if I might not be in this part of the country or in Queensland, I wanted to be ability, to be able to still talk to him and deal with him. And he certainly gave me that flexibility.

Bill Gasiamis 31:52
No problems at all. Yeah. How important is that? Like my surgeon, you would have thought initially, right, she’s opened up my head, taken out the faulty blood vessels, set me back up, sent me out into the world, and that the interaction should stop and end there. And you would kind of be okay with that. You would say, All right, well, that’s pretty normal. I don’t see that as an issue, but it’s so much cooler that since my brain surgery in 2014, 11 years later.

Bill Gasiamis 32:21
I get to be at a ball on her behalf and represent stroke survivors that they can’t other donors or the state government or the federal government. So good, yeah. So just it’s next level, right? It just feels like I’m giving back. It feels like I’m still involved. The journey hasn’t ended. You know, it’s not just no big deal. We opened your head up, we stitch you up. You go home and move on. Like there’s more that’s required. I feel like I need to do more with this experience than just cop it on the chin.

Jason Hellyer 32:58
Certainly motivating you to continue on and go bigger and better I’d imagine.

Bill Gasiamis 33:03
And I don’t really kind of understand, understand that part of the journey, but it’s really cool that I get to give back in that way. It’s something strangely, what’s the word like, makes all the things that I went through kind of, I don’t know, worth it worthwhile?

Jason Hellyer 33:23
Yeah, no, get it well, you’ve got purpose. Now, you know your purpose is, what you’re doing is to to bring not only your story, but all of our stories, to everyone who’s going through this terrible, terrible thing. But, I mean, I listened to so many of your podcasts when I was going through it and and that’s how my wife actually found your name was on my podcast list when she was telling me what I should do and go and tell your story, etc. And so, yeah, certainly helped me, and helped me understand what I was going through. I mean, I didn’t know anything of anything.

Jason Hellyer 33:53
And listening to yourself, I lucky enough I had, I never took holiday. So I had a I had like, 12 weeks plus of holidays up my sleeve. So I just took them. But be quite honest, Bill, I never went back. I just stopped completely. I was lucky enough, and I was a position I could do. So for a short period, I was never going to be forever, but I knew what for that next 12 months, I had to concentrate on me and fixing me, and with, like you said, By fixing me, I could then help everyone around me as well, sort of recover, because they’ve all been impacted in some way from what happened.

Bill Gasiamis 34:30
Yeah, 12 weeks of holidays in Australia, that’s three years of holiday.

Jason Hellyer 34:34
That’s right, that’s right. You haven’t gone on.

Bill Gasiamis 34:38
Yeah, how? No downtime, nothing. I mean, just public holiday, obviously, and the main days, Christmas, New Year’s that kind of stuff, yeah, but no getting away, no, nothing.

Jason Hellyer 34:49
No, not really, no, not a lot of it. You know, it’s just how it was. It’s just how it is in that industry, you know, yeah, just crazy. You know, a lot of people don’t have a sort.

Bill Gasiamis 35:00
Like, I was gonna say your wife, like, surely, she’s going take a break. Let’s go somewhere. Let’s do something in that time, isn’t she?

Jason Hellyer 35:07
Well, casually, yeah. Well, I mean, she might have had a break, but I didn’t.

Bill Gasiamis 35:12
So she might have given that, had herself that opportunity to, you know, chill out a little bit somewhere for a couple of weeks. But you never did?

Jason Hellyer 35:21
Yeah, well, a little bit here and there, but nothing, nothing where I took major leave from or anything like that, but I certainly, I certainly did in the end, and it was also glad I had it up my sleeve, because certainly allowed a good peace of mind knowing you had income too during that period.

Bill Gasiamis 35:37
So yeah. So what did you do, like for downtime? When you did have some couple of days away from work or some downtime? How did you like to have fun, other than drinking and smoking.

Jason Hellyer 35:49
Which is always been about Mad fisherman. So I was a especially a beach fisherman. Grew up on the coast my whole life. So, you know, I surfed all my all my youth, and it’s the ocean’s been part of my life forever. So, you know, always a lot of time around the beach and around the lakes and around the river systems, etc. And, you know, it’s a place where I feel at home, whether it’s on a river and kayaking and all that sort of anything to do with the water I was involved in.

Bill Gasiamis 36:18
Yeah, that’s very cool. Did you do a life mortality check when you went through this? Did it trigger you in that way to think about things could end Absolutely?

Jason Hellyer 36:33
Yeah, it gives you a great the great reality comes with the fact that you know you’re not going to be here forever, and it certainly sets in place very quickly of what’s important. And it’s not how big your house is or what sort of car you drive, I can tell you now there’s no no importance to me whatsoever, it’s just all about, I remember lying on that bed, and I would have given when it first happened, older, given everything I owned just to have my children the room, it was, it’s a realism is something everyone needs to sort of go through. I think it’s a check that everyone needs at some stage.

Bill Gasiamis 37:18
What were the ages of the children. What’s the span?

Jason Hellyer 37:24
At that stage? It would have been 17 up to 26.

Bill Gasiamis 37:32
Okay, my god, you guys had a busy life. Well, sounds like you were at least good at one pastime. That’s right, yeah, yeah, good on you, man. So, so like nine years between the first one and the second one, and there was six children, you know, six children all up. Yeah, wow. You had to be just on all the time to deal with all of the stuff that happened in a family of six.

Jason Hellyer 38:04
Yeah, it’s probably why I drink.

Bill Gasiamis 38:07
Yeah. Super Woman. Is she working in that time, or is she, like, doing homework.

Jason Hellyer 38:16
Lucky enough that she could do a bit of a stay at home parenting, which was a blessing, yeah.

Bill Gasiamis 38:23
Yeah, far out. Man. What an out. What a like, you know, what an output that needs to sort of happen on a daily basis, you know, managing all those kids, get up, go to school, do your homework, sit down and eat, tidy up, you know, yes, I struggled with two kids, and you guys had six. I love it. Crazy. It is, I like it. So now, what’s life like now? So I know you’ve said there’s been a big difference, a big shift and a swing away from that kind of stuff. How do you go about your your day to day?

Jason Hellyer 39:01
Well, I have a very, very calm and peaceful life now. Well, the kids are flying the roost, so I don’t have any of those responsibilities. They’re often at university and working and doing all the bits and pieces. That’s the wife and I now. We’ve done a bit of travel, and we’ve, as I said before, we’ve just bought ourselves a little little farm up near Dubbo, and we’re renovating an old cottage up here now, and eventually we’ll get up here in the next few years.

Jason Hellyer 39:27
And this will be our little forever Nan and pop home looked at it was going to be we would choose a beautiful lifestyle over monetary items and Chasing career goals that mean nothing on a gravestone.

Bill Gasiamis 39:42
Yeah. Are you planning on having anything on the farm? Like, I know you have a farm, but are you going to grow anything raising it?

Jason Hellyer 39:50
No, I was up to the washi over miniature cows and all those things I see on Instagram. But yeah, in reality of it, I think it’ll be a. You chokes. We do. We don’t know yet. We’ll just see what happens. Just concentrate on getting the farmhouse up and running at the moment. And, you know, got chippies here as we speak, knocking things out. It’s 110 years old, so they’re finding new little things here and there all the time that we’ve been hidden. So, but it’s fun to do.

Bill Gasiamis 40:17
Yeah, for the people listening who are overseas, chippies are carpenters. We call, of course, in Australia, amongst others, of course, of course. Yes, that’s cool. So how about your health? Medication, all that kind.

Jason Hellyer 40:33
Of turned.

Bill Gasiamis 40:34
Radically. So how much weight did you lose?

Jason Hellyer 40:38
About 24 kilos. I’m down now. I think from I’m starting, I’m still on my work in progress. Still, I’ve done quite a few things and but I’m constantly working on, working on flexibility and everything at the moment. Whereas as we’re getting older, one of the worst things for as you get older is to get up and out of chairs and up and down off the ground and little things like that. So working. So it’s a forever work. I’m an ongoing artwork that’s got to always need fine tuning.

Bill Gasiamis 41:10
And are you tall?

Jason Hellyer 41:13
No, God no. Wish I was. My father was six foot four, and my mother was five foot two. And guess height I got mums? Yeah, so I come in around five eight.

Bill Gasiamis 41:23
It’s five eight roughly me so, but 110 kilos, that’s quite heavy for somebody, that’s fine.

Jason Hellyer 41:28
Yeah, I was rotund.

Bill Gasiamis 41:33
Rotund. Okay, yeah, that’s a big improvement, just the difference that that that makes on your physical like your body, being able to deal with all the physical side of it, that’s really good outcome, and working on your strength ongoing is really interesting that they say, Can I think like this studies about, Like the the muscles that you have on your body is directly correlated to the longevity of your life.

Jason Hellyer 42:08
Absolutely, yeah, I’m a big reader of all that sort of Dan Buettner stuff on the blue zones and longevity, and so I’ve done a lot of homework on that and, you know, and all that precautionary sort of exercise that we can do. So yeah, said every day is a little bit.

Bill Gasiamis 42:25
Like you go down that path. What you’re doing is you are improving your health, increasing your biological age, you know? So that’s exactly what we want to do, and that helps the brain. It helps the brain heal, recover, get better and better and better. And that’s exactly where you want to be heading. Also, absolutely, I was curious about, like, how stroke has changed you, not just physically, but also emotionally and and mentally.

Jason Hellyer 42:53
You know, I think the fact that I gave up the drinking was such a big part of my life on the day to day. I mean, I never considered myself to be an alcoholic. I was just someone who went for a beer. But in hindsight, I think I was, you know, and for, like, for the last three years now. I mean, I’ve been at a crystal clear mind every day, all day. I’ve had nothing. I’ve never had a hangover. I haven’t had this of so sharp now, and so my mind is so clear, and I’m so focused on everything I do with no deterrent or anything sabotaging it.

Bill Gasiamis 43:28
Wow.

Jason Hellyer 43:29
That it’s because better than ever, magic, so to speak.

Bill Gasiamis 43:37
So you just like you just had it. You were doing it for so long, you didn’t have a moment of extended period of time where you had a lot of clarity from.

Jason Hellyer 43:48
No alcohol, no, just get up and just grind and go again. And I’d a couple of beers on a Wednesday night, and that’d flow into a Thursday, then catch up on a Friday, then Saturday, down at the pub with the boys on the betting on the horses and Sunday recovery session, as I used to call them, going over couple of beers and a meal over the water. And they’re just week in, week out, week in, week out. Just yeah, it was for so long, it was normal, and I wasn’t alone. I mean, there was an army of us that used to do it, and they’re still doing it.

Jason Hellyer 44:25
I’ve actually influenced quite a few of my mates have actually given up the drink and everything now too. So sort of seen the changes I’ve made, and they’ve made the change themselves. But there’s plenty. There’s plenty of still playing the big game, so hopefully they don’t find out the hard way, like me.

Bill Gasiamis 44:40
Yeah, do you still get to hang out with them in the same environment? Environments and not drink? Sure? Yeah, I’m the first.

Jason Hellyer 44:45
One they ring because I drive everyone home. Yeah, if I’m up in the area, I don’t stay for hours or anything like you still just catching. Drop in, catch up, say, good day. And, you know, I head on back home and got on my I’m in bed by nine these days, you know. And the more the mornings are by my my beautiful place, it’s the early mornings are where I thrive. I love it. Yeah, so good.

Bill Gasiamis 45:21
What strengths have you discovered in yourself that you didn’t know you had?

Jason Hellyer 45:26
IEP challenges some of you, which you’re aware and firstly, that was to lose the weight and to rebuild my strength, and then to get to here and there, and then set some tasks, like whether it was bike riding, at first it was like a 10 kilometer ride. Then it became a 25 kilometer ride. And then I thought, I could, I can do that lap twice, so it’ll be a 50 kilometer ride. And once I started to realize I could do that, I was thinking, I’m probably capable of more, a lot more than what I’m thinking I am.

Jason Hellyer 45:54
And when I was a young bloke, I loved endurance events, and certainly was it was capable in that regard, and could run all day, so to speak, you know. And I wasn’t. I couldn’t. My knees were shot from the weight I carried. But I could cycle. And I wasn’t a road cyclist or anything like that. I was basically board shorts instead of pluggers or thongs for those overseas listeners and well, flip flop, sorry, yeah. And a, you know, a surf t shirt, and I was off on the foot pass, and I was born. So, yeah, so our target then, so then we decided, let’s go and have a crack at that.

Jason Hellyer 46:36
We did that 700 kilometers through the Pyrenees and through Spain and all that over, in this case, was gone, and another option, not an option. And if you know Europe well, and I’m sure you realize that it’s not flat like Australia, it’s she’s up and down everywhere. It’s crazy, you know. And also to prove to my, you know, friends and my family and and in a way, to apologize to my past self for what I’d done to myself to now give myself the opportunity to do something amazing.

Jason Hellyer 47:10
And that’s when I decided to paddle the length of the Murray River, and Australia’s longest river and the third longest navigable, navigable river in the world, and set most sights on that dude.

Bill Gasiamis 47:21
Was that televised somewhere? Did people talk about that?

Jason Hellyer 47:26
I read about it. I read about it years ago as a young man, and I was always been, I’ve always been fascinated by Australia, the historic side of Australia, and the explorers. And it was always a great read for me. And the old river systems used to be highways, really. And there’s 1000 stories of people who’ve done it. And, you know, canoes, they used to make corrugated iron. And, you know, there’s a million stories out there like that. And it fascinated me, and that’s sort of what led to that.

Bill Gasiamis 47:55
Yeah, very cool. So do you think that part of the reason why?

Jason Hellyer 48:01
Well, the limiting mindset was that it was taking too long away from work and beer, simple as that, yeah, how do I take beer with me? That’s mental. It’s so messed up. It’s ridiculous, you know? It’s just but, I mean, I wasn’t even thinking about doing I said to myself, I’ll do that one day. I’ll do that one day. Then I’d look at myself in the mirror and go, you’re not doing anything. You’re fat bastard, you know, until you get your life sorted. But then one day just roll into another. It was just, it was just Groundhog Day, because continuously, and I said the wake up call I needed, was what happened.

Jason Hellyer 48:42
And then finally, as I said, when we got to the Camino, I realized I was capable of doing something as epic as that, you know, and there’s only, there’s an inland rivers register they have of Marathon journeys in the river systems here in Australia. And to date, there was 514 people had done it prior to myself. And to put it into context, as I tell people, is over 20,000 have climbed Everest.

Jason Hellyer 49:10
So there’s a small handful have done the trip on the in the modern era. I’m sure there’s plenty more that prior, but it was a challenge. I wanted to set myself alone, self sufficient. That was the scariest thing, I think, was actually being alone. And if something happened, I had no one to call on, and I wasn’t, you know, in some circumstances, of the hundreds of quarters from anyone.

Bill Gasiamis 49:34
Man, that is crazy. So you know, what’s interesting is that in the modern era, you know, we have these massive goals of, like, going further, longer, harder, whatever the indigenous people would have been up and down that river millions of times. And they always, surely they never thought, let me just see if I can just go, like, for 20 days straight, you know, without any support, help or anything.

Bill Gasiamis 49:57
It was always about practical. You shop the river. It was, I need to get somewhere. I need to, you know, deliver something. I need to go see another community. We’re gonna get food, whatever, you know, but we’ve got to do these, I don’t know, let’s go to the moon.

Jason Hellyer 50:14
Yeah, couldn’t go more, yeah, absolutely. They done it just to just get the family fed.

Bill Gasiamis 50:21
And I kind of get it. I kind of get those long endurance kind of events. I know that a lot of people get a lot out of them. Personally, it helps them break down barriers and overcome negative talk and all that kind of stuff. And I know that stroke survivors would benefit a lot from going. I’ve never walked more than a kilometer. I’m going to push myself to go two kilometers today, like I totally get that. But for everybody who’s listening and watching, what I’m trying to say is you don’t have to do a 5 day, 10 day, 12 day journey.

Bill Gasiamis 50:54
Just go around a block an extra time than you’ve been before. That’s enough. You the the feats of brilliance or effort or whatever, they just have to be something that helps you improve your personal best so that you can just see that there’s more to you than how you perceive yourself right now.

Jason Hellyer 51:14
That’s right, and getting all gone by one big choice, it was as I as I reached each goal, it allowed me to realize that maybe I could do a little bit more, you know, maybe I could do a little bit more of this and go a little bit harder. And I think it was more than just also just just to prove to myself that I can.

Bill Gasiamis 51:35
Okay. So that makes sense. Then, like, if you’ve done it in 1000 small steps, and then you’ve had goals that you beat every single time, then that makes life sense. I love that. That’s better than going, I’m going to wake up today and I think I’m going to go run 400 kilometers, and if I don’t, I’m a loser.

Jason Hellyer 51:53
Yeah, no, I didn’t. Didn’t know a lot of training is probably a year and a half where the training went into it, and 1000 1000 small goals in that process as well. So I knew if I didn’t get from that one to that one, I wouldn’t be able to do this one. So yeah, it’s all, it’s a domino effect moving forward.

Bill Gasiamis 52:12
Yeah. So sounds like stroke has changed your life in a meaningful way, like proper.

Jason Hellyer 52:17
Absolutely, yeah, and I think it’s certainly your mindset has so much to do with it, you can either choose the defeated mindset, or you can do the best of what you’ve got. I mean, I know I’m very lucky compared to some, and I’m fully aware of that, but every day I remind myself, and it’s sort of what keeps me motivated.

Bill Gasiamis 52:37
Yeah, if you could share one lesson from your journey with somebody who’s newly diagnosed? What would that be?

Jason Hellyer 52:46
Well, I think about basically just, I suppose what I just said is that choose the choose the right mindset. You know, you can’t, even though it’s, feels defeating and it’s easy to go down that path you really need to focus on those one those small goals, one at a time, and step by step, you’ll get there. But that mindset is so important to a to a faster recovery and the appreciation of still being here.

Jason Hellyer 53:16
I think that’s, it’s so important. I mean, that’s my mindset. Is the number one thing that’s got me through everything. Don’t get me wrong, it’s been bad sometimes too, but recognizing it, and I could tell when I’m heading down that path and I’ve could have a little chat to myself and talk myself around and not let yourself go down that way.

Bill Gasiamis 53:38
Did you feel the need to have conversations with counselors, psychologists, or anything like that in this time?

Jason Hellyer 53:44
No, I didn’t. I probably should have, but I didn’t know. And I read and read and educated myself listen to podcasts like your own and others on not only on stroke, but also on health and healing, and you know, the nutrition and just physics in general, the body and a million different things, you know. And I’ve always been an avid learner or a self educator, and it was that was certainly what helped me as well understand what had happened and understand what I had to do going forward.

Bill Gasiamis 54:20
Yeah, that’s just as helpful. I mean, it just getting stuck into the content that’s available for free online is just as good as being absolutely you know, counseling, for me is kind of that a little bit next level. It’s when I want to personalize my conversation what I’ve learned with somebody else, so that they can reflect back on me, and they can give me another and I feel like you don’t get anything out of watching or listening to YouTube videos or books or whatever, then a counselor could be perfect, right?

Bill Gasiamis 54:52
Just go there, have a quick one hour conversation, get some stuff off your chest, get some feedback, and then, you know, take that to the next session. And. And also implement whatever you learned during during the break between one session and the next. And it’s awesome. It’s a great way to go. So I like the way you go about things, like, I like how you catch yourself, you know, in a negative mindset or spiral, or whatever, and you can snap out of it. And I think that’s a skill, if we practice that more often, I think that helps.

Bill Gasiamis 55:24
One of the ways that I do that is I say like, is what I’m doing useful right now? Is that helpful to me in any way? Is arguing with my wife beneficial in any way? Like, what the hell are you doing? Okay, take a moment. Get the hell out of there. Change the scenery, go back, maybe apologize to my wife, to myself, to whomever. Can I do, do the work that I’ve got to do, to kind of go all right, I was there. I’m okay for being there.

Bill Gasiamis 55:51
I prefer not to be there, and this is how I’m going to stop myself staying there for a long time, because I’m still giving myself permission to go there. But I’m going to try and decrease the amount of time I stay there absolutely.

Jason Hellyer 56:05
Yeah, no, I hear you exactly, yeah. I just tried not to argue with my wife in general.

Bill Gasiamis 56:18
I’ve got one last question, which just popped into my head right now, when you’re walking 700 riding 700 kilometers, yes, what are you doing on those rides? I know you’re pedaling and that, but what else are you doing? Because I imagine it’s not just no talking close, you know, like focus and just writing, like, what goes on?

Jason Hellyer 56:40
Well, it’s, I think, the beauty of the Camino de Santiago. It’s such an ancient pilgrimage. And it’s we riding through towns and past cathedrals are 1002 1000 years old, and the same as the towns that we’ve got, we’ve got such a lack of history here in Australia, not not our Aboriginal history, of course, but our white history that we can have. You just realize how young we are here as a this side, that side of our country. It’s incredible, and the it’s so different. And, you know, and you can the amount of pastries you can eat on 100 kilometer bike trip is phenomenal.

Jason Hellyer 57:24
So yeah, every little Yeah, and it’s not like it’s 100 kilometer stretches between towns. There’s a new little town every 30 or 40 kilometers. So it’s quite, it’s not, you know, we weren’t sleeping, we weren’t sleeping in the bush or anything like that. So there was luxury at the end of the day, and it was amazing things to go and see and sells the sites. And we weren’t, we weren’t rushing through it. So it was beautiful.

Bill Gasiamis 57:53
Yeah, okay, so it’s an experience. It’s not grueling, it’s not a endurance event or anything like that, go along and then see what’s going on and where you’re Yeah, you’re at something new. And the good thing about doing 700 kilometers, you don’t have to feel guilty about the pastries.

Jason Hellyer 58:13
No, that’s right. No, we certainly didn’t. No, no, I don’t think we lost any weight at all, but that’s okay. That’s what it was for us to for us a little reward for us for all the work we’ve done on, you know, repairing my health and and Sharon, my wife, being as beautifully supportive, supportive as she’s been.

Bill Gasiamis 58:33
Yeah, mate, it’s a real pleasure to meet you. Thank you so much for joining me on the podcast your story.

Jason Hellyer 58:40
You too, Bill. No worries. Thanks for having me.

Bill Gasiamis 58:42
That was Jason Hellyer sharing how a stroke became the turning point that reshaped his life, physically, mentally and emotionally. If you’ve been inspired by Jason’s story, remember, recovery isn’t about perfection, it’s about progress, lifestyle change, mindset and patience can make a world of difference. You can find Jason’s full episode and others like it on YouTube, Spotify and Apple podcasts. Just search Recovery After Stroke.

Bill Gasiamis 59:10
If you’d like to dive deeper into your own recovery journey, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com/book. And if you’d like to support this podcast and keep it going, consider heading over to patreon.com/recoveryafterstroke. And of course, a final thanks to Banksia Tech, proud distributors of the Hanson Rehab Glove by Cerebro for helping make this episode possible. Until next time, remember, be kind to yourself, celebrate the small wins and keep moving forward in your recovery journey.

Intro 59:45
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion. Nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:00:15
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Intro 1:00:40
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Intro 1:01:06
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The post Overcoming Ischemic Stroke Through Lifestyle Change: Jason Hellyer’s Wake-Up Call appeared first on Recovery After Stroke.

When a series of crushing headaches brought Carolyn J. Routh to the hospital, she thought it was just another battle in her long fight with Type 1 diabetes. But what looked like migraines was something far more serious — a venous sinus thrombosis stroke waiting to strike.

On Thanksgiving morning in 2003, while lying in a hospital bed surrounded by doctors, 

For weeks, Carolyn had been in and out of doctors’ offices looking for answers. Her MRI had come back clear, and everyone believed she was fine. But her instincts told her something was wrong. “The pain was unbearable,” she remembers. “It wasn’t a normal headache — it felt like my head was going to explode.”

When she suddenly lost her speech, everything shifted. “In my mind I knew what I wanted to say, but all that came out was gibberish.” She was transferred to a larger hospital, where she would finally discover what had been missed — a blood clot the size of a pinky finger sitting in her brain.

By the time the doctors realized it, the stroke had already begun.

The clot had caused a venous sinus thrombosis — a rare but dangerous form of stroke that blocks blood flow in the veins of the brain. The damage left Carolyn unable to speak and paralyzed down her right side.

“I could hear and understand everything,” she says, “but I couldn’t make anyone understand me. I just gave up. I thought, this is it — I’m done.”

It’s a thought many survivors have when they first come face to face with the unknown. You can feel the life you once knew slipping away. And yet, even when everything seems lost, something inside keeps fighting — sometimes quietly, sometimes fiercely — to come back.

When Carolyn finally woke up, the doctors had warned her husband, Daniel, that she might not remember anything. But as soon as she saw him, she burst into tears and said his name.

That moment marked the beginning of her recovery.

Her speech came back first, followed by the slow, painstaking process of walking again. “Before I left the hospital, I told myself I would do everything they said I couldn’t,” she laughs. “It took me an hour to button my shirt and zip my pants — but I did it.”

Therapy became her new normal. Her right hand wouldn’t cooperate at first, and she had to consciously think about every single movement. But through persistence and sheer determination, she not only regained her strength — she found herself again.

“I may have to walk slower, but I can walk. That’s all that matters.”

Even after the body begins to heal, fear often lingers. For Carolyn, the mental recovery was just as hard as the physical. “Every headache terrified me,” she admits. “Every little twitch, every off day — I’d think, is this another stroke?”

That’s the part most people don’t see: the constant vigilance, the second-guessing, the worry that history might repeat itself.

Overcoming fear after stroke isn’t about pretending it doesn’t exist — it’s about learning to live with it. Carolyn found strength in acknowledging her fears and talking about them openly with Daniel.

“I’ve learned to tell him when something feels off,” she says. “That way, if something ever happens again, he knows what to look for.”

That communication — and her willingness to face fear head-on — became one of her greatest tools for recovery.

Today, Carolyn calls herself “a walking, talking miracle.”
She’s grateful for every moment she gets — even the hard ones.

“I used to say, ‘I hate my life,’ when things went wrong,” she admits. “But not anymore. I realized I don’t hate my life. I love my life. I just hate the tough moments sometimes — and that’s okay.”

That simple shift in language — from hopelessness to gratitude — transformed her recovery. She stopped seeing her stroke as the end of her story and began viewing it as a new beginning.

“Find your happy,” she says. “Some days it’s harder than others, but there’s always something to be grateful for.”

Throughout her recovery, Carolyn’s husband, Daniel, became her anchor.
He pushed her when she needed it and caught her when she fell — figuratively and literally.

“There were days I’d get so mad at him for pushing me,” she laughs. “But I know now, he was doing it because he believed in me even when I didn’t.”

For many stroke survivors, that kind of support — from partners, family, friends, or even an online community — can make the difference between giving up and growing stronger.

If you don’t have that support around you yet, find it. Connect with other survivors. Join a group. Talk to someone who understands. You don’t have to do recovery alone.

Carolyn’s story is one of resilience, but also of realism. Recovery isn’t quick or easy. There are moments of fear, grief, and frustration — but also joy, laughter, and gratitude.

Every day is a balancing act between fear and faith, exhaustion and persistence, setbacks and victories.

Carolyn continues to travel, share her music, and live life fully — proof that recovery isn’t about getting back to who you were, but becoming someone even stronger than before.

Fear after stroke is normal. But it doesn’t have to control you. Here are a few ideas that helped Carolyn — and may help you too:

• Acknowledge it: Fear thrives in silence. Talking about it breaks its grip.
• Track your triggers: Notice what causes anxiety — fatigue, pain, certain thoughts — and share that with your doctor.
• Stay connected: Isolation feeds fear; community dissolves it.
• Focus on gratitude: Each small victory matters — and gratitude fuels hope.
• Remember your why: Like Carolyn, find your reason to keep going. It could be your family, your friends, your dreams — or simply life itself.

If you’ve survived a stroke, you’ve already proven your strength.
Recovery isn’t about being fearless — it’s about moving forward despite fear.

Carolyn’s journey reminds us that even when life stops without warning, it can restart with purpose.

Want more stories like Carolyn’s?
Read The Unexpected Way That a Stroke Became the Best Thing That Happened — a book that helps you find meaning and direction after stroke.

Join our community on Patreon: patreon.com/recoveryafterstroke
You’ll gain access to survivor Q&As, behind-the-scenes insights, and one-on-one guidance to help you move forward.

Carolyn J. Routh’s story shows how strength, hope, and love can guide you through fear and toward recovery after stroke.

Support The Recovery After Stroke Podcast on Patreon

Carolyn’s Socials:
Instagram
Tiktok
Website

Highlights:

00:00 Carolyn J. Routh’s Introduction and Background
02:24 The Day of the Stroke
07:23 Immediate Aftermath and Recovery
13:30 Challenges and Deficits Post-Stroke
25:06 Emotional and Mental Impact
32:42 Bill: Navigating New Battles After Stroke Recovery
41:58 Life After Stroke and Band Activities
54:32 Advice for Stroke Survivors
1:03:21 Final Thoughts and Contact Information

Transcript:

Bill Gasiamis 0:00
Hey there. It’s bill here before we jump in a quick thank you to everyone who’s been supporting the show on Patreon. Your help covers some of the costs and keeps this Recovery After Stroke Podcast going after more than 10 years of me doing this solo and a big shout out to Banksia Tech, proud supporters of this episode and distributors of the Hanson rehab glove by cerebro. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, and you’ll hear more about this later in the episode.

Bill Gasiamis 0:33
Today’s guest is Carolyn J. Routh, who had a venous sinus thrombosis stroke at just 34 she lost her speech, her right side movement, and for a moment, her confidence. This episode is about overcoming fear after stroke, and how Carolyn found her way back to strength, gratitude and purpose. So grab a tea or coffee, settle in and let’s get into it. Carolyn Routh, welcome to the podcast.

Carolyn Routh 0:57
Thank you for having me. This is going to be great.

Bill Gasiamis 1:00
It certainly is. Tell me a little bit about what was life like before stroke?

Carolyn Routh 1:06
Pretty normal. I guess. I grew up in a family business. My grandparents started a restaurant in 1946 so I grew up in the back of the restaurant and worked there. Always wanted to be a musician. And finally, in 2003 Well, 2001 let me back up. My husband, Daniel, and I met. He’s the guitar player, and we started new blue, and we haven’t looked back since. We’ve enjoyed playing music.

Carolyn Routh 1:31
And I had two strokes my my two strokes right after we started new blue. So everything was great. Up until that point, the band was going great. We were both enjoying what we did. I was just loving life, and then the strokes that set us back a little bit.

Bill Gasiamis 1:54
I have a feeling that new Blue was a country band.

Carolyn Routh 1:59
We played blue grass, and we do a little bit of country here and there. We even throw some rock tunes in, because Daniel and I both had a rock and roll background, so we had to do a little bit of that just to satisfy what we came from.

Bill Gasiamis 2:12
How old were you guys when the band got started?

Carolyn Routh 2:14
I was 34, and let’s see, 34 Daniel would have been 25 he’s nine years younger than I am.

Bill Gasiamis 2:24
Okay, I like it, my wife’s four years older than me. And, you know, even she got the ah, you go for the younger ones. And it’s like, wow. Age is really, you know, it’s really not that relevant, in my opinion. And as long as the two people are in it for the same reason, and everyone’s on board for the same reason, then that’s cool, right? And that reason for me would be love, right?

Carolyn Routh 2:52
Yes, sir, absolutely. We started out as best friends because of the music, and in fact, we were best friends long before we ever started new blue. So I really don’t know when it turned from friendship to more than friendship. Those lines kind of blur. He never really asked me to marry him. It was just like we both knew it was time to get married, and so we went and got married at the courthouse.

Bill Gasiamis 3:17
I love it. So he, he was definitely, I’ll tell you now, he was definitely on board the whole time. He was thinking, Well, how am I going to manage this? How am I going to get married to this person? And then I think he he thought, why don’t I just go with the flow, go with the flow, and then just spring it on her one day.

Carolyn Routh 3:35
That’s kind of what happened. It really is. That’s a good description of it. But he was there through all the strokes, because that’s when we were best friends. We didn’t get married. We started the band in 2003 and we weren’t married until 2006 so there was a while there.

Bill Gasiamis 3:50
What was the day like of the strokes before they happened? What were you up to? What were you doing?

Carolyn Routh 3:55
Well, it really happened in a weird way. I had been having severe, severe headaches, like for three or four weeks, went to the doctor. They thought it was migraines. They were going to send me to a Headache Clinic, and before I got there one weekend, it just got so bad that it was debilitating. And so they took me to the hospital, and I stayed in the hospital for the weekend, they the only thing they really did was just medicate me, which was not good. I don’t like taking a lot of medicine. And then they released me on Wednesday morning, they had done an MRI.

Carolyn Routh 4:34
The MRI came back and they said, You’re clear. There’s no problems. We’re just going to send you to the the Headache Clinic the following Sunday and then on Thursday morning, Thanksgiving morning of 2003 laying on a hospital bed in an ER and Moses cone, it’s one of the hospitals here. It’s one of the the bigger hospitals here, surrounded by Team. Of neurologist, I had my strokes, so I could not have been in a better spot at that time to have strokes than where I was at.

Bill Gasiamis 5:09
Goodness, that is the best timing ever and when. So that’s the thing. You’re in the hospital and you have the strokes, but the before that, the MRI didn’t show anything.

Carolyn Routh 5:21
No, when I got to the hospital, they did another MRI. This is before I stroked I actually came into the hospital the night before, because I lost my speech. I was just garbling everything in my brain. I knew what I wanted to say, but it just came out like mush. It was indistinguishable. So that’s when they took me to the hospital then, and I’m also a diabetic, and at that point, everybody just thought I was having a very low blood glucose, and that’s what was causing that. And then they transferred me from our hospital to the larger hospital late in the night, and they did another MRI.

Carolyn Routh 5:59
And after I had the strokes, my neurologist took Daniel back in some room and showed him the two MRI slides, the one at the previous hospital, like four days before you could see the clot. You see the clot perfectly formed, and they just totally missed it. I don’t know who read that, but they need to find another job.

Carolyn Routh 6:23
I don’t know whether that would have made a difference or not, but I would think possibly, if they had known about it even three days before the incident, that they may could have started blood thinners and done something about it. So it just, it was, it was really unfortunate on the front side, but it was going to happen again. I was in the best place for it to happen, at the hospital.

Bill Gasiamis 6:44
Yeah, human beings sometimes make mistakes, and unfortunately, in hospitals, the mistakes can be dramatic. Then you you know, you’re presenting with a stroke, with stroke symptoms. They take a scan, somebody missed it, or whatever. You don’t look like you’re having a stroke, really, you know, you know, it’s not the common stroke signs or or symptoms, they kind of go, “Oh well, and it’s probably not a stroke. It’s something else” And that’s the thing. They scanned my head about what I’d say, maybe 18 months before my stroke, my first bleed, and they never found it either. It was mine.

Bill Gasiamis 7:23
Was a blood vessel that was malformed, and they never found that either. So sometimes, you know, these things happen, and I went for a massive headache and all the real challenging kind of head situation. And they did every test. They scanned it. They did everything because it hadn’t bled yet. They never found blood. So that ruled out certain things. But then they also missed it on the on the scan, because the scan wasn’t looking for, unfortunately, a blood vessel type problem. It was looking for other things. I don’t know what, but yeah, these things happen, it’s common.

Carolyn Routh 7:59
Mine was very surprising because I had venous sinus thrombosis, and my my clot was right here in the top of my head, and it was about the size of a pinky. I mean, it was very pronounced, and when my brain had started rerouting around that spot, thank goodness it was it was a vein. It was Venus, so it was flowing back, or I would have probably not been here right now, but my brain, being the remarkable thing that it is, had started trying to reroute around the clot.

Carolyn Routh 8:30
And that’s I stroked first. So that’s when that one blew out and the blood hit my brain, and then that’s when I stroked and they found the clock. It was. It was a pretty remarkable occurrence, genuinely very unexpected, and just if it’s going to happen, it’s going to happen to me.

Bill Gasiamis 8:53
It’s a remarkable occurrence. That’s understatement of the year, definitely remarkable. I mean, everything that could go wrong went wrong. And then everything that could go right under the circumstances definitely went right this time around. What when you woke up? Or firstly, how long did it take for you to sort of come around and be back in the world again?

Carolyn Routh 9:14
Well, I I remember being in the first hospital again. I had awareness of what was going on around me. I just couldn’t speak. And because I could, and I just, I sort of gave up at that point, you know, I just, I felt like I was just laying there on that bed. Nobody knew what was going on with me. Nobody knew. I couldn’t tell anybody what I was feeling. And so I had just sort of given up and just resigned myself to what happens, happens, because I had no clue what was happening either.

Carolyn Routh 9:39
And when I got to the larger hospital after they did the MRI, or when they were doing the MRI, I am terribly claustrophobic, and I was aware enough to realize they’re sliding me into this tube, and I freaked out. I mean, I can remember the I can remember hands on me. I can remember the tube, and I can. Remember what to me sounded like the Wicked Witch of the East or the West, whatever it was from the Wizard of Oz movie, just screeching at me, stop moving. Stop moving. You’ve messed everything up.

Carolyn Routh 10:12
They ended up drugging me when they put me in and then when they found the clocks I stayed they had me totally knocked out like for three days, just to try to give my brain time to heal. And they had apparently told Daniel that when I woke up they didn’t know what my cognitive ability would be at that time, what my memory would be. They were kind of preparing him for the worst.

Carolyn Routh 10:35
So it was three days, and when I finally woke up, I saw somebody going out of the room. I caught it out of the corner of my eye, and I spoke to him. I, you know, cried out to him, and they came in there and checked me and got Daniel in there. And I remember the first time that I saw him after that, the door was behind me, and he had come around the door and walked to the end of the stretcher and, sort of, you know, touched my foot and said, and said, Do you know who I am? And I just started crying.

Bill Gasiamis 11:03
We’ll be back with more of Carolyn’s remarkable story in just a moment. But first, I want to take a quick moment to thank Banksia tech for supporting this episode. They’re the distributors of the Hanson rehab glove by cerebro. This one here that I’m holding in my hand, a clever piece of tech that helps stroke survivors regain hand strength and function right from home. If you’re working on your recovery and want to know more, there’s a link in the show notes. All right, let’s get back to Carolyn and how she learned to face fear with courage.

Carolyn Routh 11:34
Because I remembered him and so it was that was another one of those moments in life that really stands out in my mind the first time I saw him again and realized I was kind of back in the world. So those few days though I have, I have really no memory of I have, I have flashes. They would wake me up every so often to make sure I would wake up. But that’s all, nothing was clear.

Carolyn Routh 11:57
Then I would have a little bit of reasoning skills to know how I’m waking up, but I thought somebody was trying to kill me. That’s where my brain was. I thought they were trying to kill me. Thankfully, we were not.

Bill Gasiamis 12:07
They were doing the opposite. So you’re, you know, when you said you ex, you kind of resigned. Was it resigned to the fact that something’s happening to you? Don’t know what’s happening. You just kind of let it happen. Was that acceptance? Did you know you were having a stroke? What was that? Was it just resigning to the fact, or was it that you would just wear cognitively not capable of processing everything?

Carolyn Routh 12:33
What triggered that mostly was I had been seen a new endocrinologist for my diabetes, and my blood glucose levels had not been in very tight control. There I was just at one of those points in life, they were just kind of crazy. And I remember him emphatically telling me over a few visits, you’ve got to get this under control, because if you don’t, you’re going to have a low one day, and you’re just going to you’re just going to be in a coma, you’re just going to be a vegetable the rest of your life.

Carolyn Routh 13:00
And that’s what I was thinking when that happened, and I couldn’t talk and I hadn’t did have a low blood sugar about the time that this was happening at home, and they had treated it, they’ve given me orange juice. So it wasn’t, it wasn’t a blood glucose thing. It was the stroke. It was all of that starting. But for me, when I just kind of gave up there at the hospital to begin with, in my brain. I was actually because of my blood glucose being low, I done it. You did this to yourself. This is your fault. It finally happened.

Carolyn Routh 13:30
What this doctor was saying, you’re just going to be a vegetable the rest of your life, and that’s what I was believing. So that’s why I gave up. And you know, what can you do about it at that point?

Bill Gasiamis 13:40
Yeah, going with the flow is probably the only thing you can do, and hopefully the flow goes the right direction and it goes in your way. So were you dealing with type one or type two diabetes?

Carolyn Routh 13:51
I developed type one when I was just before I turned 11 years old, and I’ve been living with that essentially my whole life.

Bill Gasiamis 13:58
And what does it do? What is the dangerous part of it? Because I understand type two. It’s people’s pancreas not being able to generate insulin or becoming or the body becoming insulin resistant, where it doesn’t matter how much the body tries, they can’t deal with the high blood sugar levels due to diet and due to your consumption of food, right? So what is type one all about?

Carolyn Routh 14:26
Type one, essentially, my pancreas is dead. It doesn’t do anything. It produces zero insulin. So I have to take insulin. When I was younger, I took insulin shots. That was way back before insulin pumps. In fact, I can remember the very first Medtronic insulin pump that was invented, and they were pushing me to go on. And at that time, they were very large, and I was a child, and I didn’t want to carry this thing around all the time, so I started taking shots. And that’s, that’s totally where I get my insulin is from shots. And I do have an insulin pump.

Carolyn Routh 14:59
And now I’ve been on this since 1992 and it was a life changing experience, because now I can program how much insulin I’m getting, so I don’t have to constantly take a shot. I do have a blood glucose monitor that gives me in real time where I’m at so that I can adjust as necessary, but type one is an entirely different beast than type two. It’s like night and day, a lot of type two. Like you say patients can control it with diet, and a lot of people do, and there’s a lot of oral medications and things like that.

Carolyn Routh 15:34
Now, medical science has come a long way in treating type two, unfortunately, since they’re unable to revive your pancreas, they can’t do much for curing type one. They have just come up with a lot of ways to make it easier to manage and be able to live a more normal life when you’re type one. But there’s, there’s always that insulin issue if you don’t have enough insulin, like with type two, and your blood sugar gets really high. If it gets too high, it causes a condition called ketoacidosis, which can be deadly.

Carolyn Routh 16:11
It can cause you to go into a coma, and can kill you from lack of enough insulin. The reverse of that is low blood glucose, which is insulin shock and is a genuine emergency. High blood sugar, you need to get it taken care of, acidosis, you need to get it taken care of but you’re not going to die instantly. With high blood sugar. When your blood sugar drops, if it drops too low, you’re you’re essentially starving your body of oxygen. Works without oxygen, so it goes too low, you start feeling it in your extremities, you know, you’re dizzy.

Carolyn Routh 16:47
Different people have different symptoms that they notice, but it’s a big difference, and that’s when you have got to immediately treat it, or you could die very quickly with low blood glucose reading a lot different.

Bill Gasiamis 17:02
Your doctor was. Were your doctor saying we’ve got to get this under control? As in, there’s some kind of thing that you’re doing that’s making it worse? Can you make type one diabetes worse by diet or lifestyle or anything like that? Or is it simply you’re not taking care of when you’re taking your insulin and how much insulin you’re taking. What’s the issue with it?

Carolyn Routh 17:28
That’s all involved in it? You need to follow a diet of some sort of another to be able to control blood sugar spikes. You also have to manage your insulin, because, like you say, if you get too much insulin, that throws you into insulin shock, which is low blood glucose, that is immediately deadly, or if you’re not giving yourself enough insulin, or if the insulin level is where it needs to be, but you’re overeating, that can cause your blood sugar to go high and put you in ketoacidosis. So it’s a constant, it’s a constant vigil to try to balance your diet with your insulin intake.

Carolyn Routh 18:07
And it can go either way, but the two, the two are in this dance all the time, and you’re you’re trying to figure out who’s leading, not the one you want to be leading.

Bill Gasiamis 18:19
Sometimes you have human times, and then you just do what you need to do to feel good in the moment, and then you pay the price later.

Carolyn Routh 18:26
Well, exercise can affect it, or does affect it? Emotions can affect it, like if you’re really upset, if you get depressed, if you’re in a happy place, your emotions can have an effect on where your readings are too. Yeah, it’s a very complicated, very complicated disease, and a lot of people don’t understand it. A lot of people just automatically go because you hear more about type two, really, and about controlling it with diet and meds. And so most people, if you tell them you’re diabetic, their brain goes to type two.

Carolyn Routh 18:59
Well, can’t you control that with diet? I only wish it would be so much easier, if I could just control it with diet. So it’s a constant education, an educational process, too, with people that just don’t understand it.

Bill Gasiamis 19:15
Absolutely and then, and then you decide that you’re going to have a stroke, and now you’re dealing with type one diabetes, but you’re also dealing with what stroke caused? What did it cause to happen to your body? Any deficits that you’re dealing with?

Carolyn Routh 19:28
Well, when I first stroked, like I told you before, I lost my speech. I was just garbled with my speech. Couldn’t make sense of anything. I lost my right side, my total right side, which was really tough, because I’m right handed, so that made a big difference. And the first thing that came back when I woke up was my speech. Thankfully, I got my speech back very quickly, because I’m a vocalist, and without my voice, I mean, I was really devastated over that. And maybe more than losing my right side. Not that I wanted to not have that. But you know, you can roll somebody on stage if you need to.

Carolyn Routh 20:07
They can sing. You just you can’t replace your voice. So my voice came back first and then with my right side. I had to go through a lot of physical therapy and occupational therapy, physical therapy with my legs and learning how to walk really went very quickly. They had me walking within a few days before I left the hospital, I was able to walk. Now I was doing what I refer to as the grandma shuffle. Both feet are on the floor, and you just kind of shuffle along. And I remember one day when they were walking me down the hall with all the straps on me.

Carolyn Routh 20:41
So if I fail, and I’m just sort of shuffling around. And I thought, you know, I may have to walk this way for the rest of my life. And for about a split second, I started to feel sorry for myself. And then I thought, but I can walk, you know, it’s okay if I have to walk like this, I can still walk and get around my the occupational it took a while for my hand to come back. They had told me that I wouldn’t be able to for a long time, and I may never be able to button my shirt, zip up pants, tie shoes, brush my teeth, eat any of that stuff.

Carolyn Routh 21:13
And so when I left the hospital, before I left the hospital, and it took me about an hour to do it, but I did every one of those things getting ready to go home from the hospital. I was just so determined that I was gonna do this. I went probably for about four weeks, which ended up being about six occupational therapy visits, and at that point, they just turned me loose and said, We can’t do anything else for you. My grip strength was higher in my right hand, where the stroke it affected than it was on my left hand.

Carolyn Routh 21:41
So, I was really fortunate. I attribute part of that to just sheer tenacity, of just being determined that I was going to get better. Of course, Daniel was pushing me the whole time. You can do this yourself. You can do this yourself. I now have this is strange, but if I’m going to sign an autograph, or if I write anything, I have to focus on what my hand is doing and every movement that my hand makes.

Carolyn Routh 22:07
I couldn’t sit here with you right now and be jotting something down or writing something down on a piece of paper while I’m talking to you and focusing on you, I would have to stop and focus on my hand to be able to write again. So it’s little things like that. My husband says that my memory is a lot worse than it used to be. But what’s a husband going to say? That’s his act, you don’t remember.

Bill Gasiamis 22:28
I told you that. Why don’t you listen to me when I say something?

Carolyn Routh 22:32
So I don’t know if I can put much stock in that or not. That’s that’s an argument he and I have occasionally.

Bill Gasiamis 22:38
I wouldn’t believe him either. Well, your timing, honestly, it’s really lovely to hear your outcome, because your timing to have the stroke when you did was, you know, the best timing ever. If something bad is going to go wrong, well, then you may as well just be in the best place when it happens. And I think that’s exactly what happened to you. So it’s not a surprise that you got so much back so quickly as your brain starts to heal and everything starts to kind of, the inflammation starts to go down, and everything gets treated.

Bill Gasiamis 23:10
Waking up those neurons again with therapy and rehab and all that kind of stuff is just beautiful, like perfect. That’s, you know, we very rarely hear such amazing like good news stories after stroke, there’s always a challenge. And I’m not saying that you don’t have your own challenges. Now with it, of course you do, but it’s so much better when things go bad, things go the right way. I don’t even know if that makes sense.

Carolyn Routh 23:34
It was a miracle. I mean, I tell people a lot of times even more on stage and I talk about it, you’re looking at a walking, talking miracle, because it could have gone a lot worse, a lot worse, so many things. And I try not to think about that, because I just want to focus on where I’m at now and getting through it and coming out the other side, not to dwell on the what could have been.

Bill Gasiamis 24:00
Absolutely there’s no point in that, because it never was. So it doesn’t mean anything. What could have been, you could, you could do the whole, you know, it’s interesting. Sometimes I do this in the car, you know, when there’s a close call and we nearly have a collision, right? But, but we didn’t have the collision, because even though I or the other person made the mistake, we were able to realize what action we needed to take immediately to avoid that collision from happening. And nothing bad happened. It was fine, and yet you still get all worked up about it.

Bill Gasiamis 24:33
And you know, you shake your hand at the person that was driving potentially having done the wrong thing, and you think that that’s the right response, and it’s really not, because it was avoided. Nothing happened. So that’s, you know, it nearly happened. I mean an inch away. Well, you’re that doesn’t mean anything. You may as well been two kilometers away. It doesn’t make a difference. But I love what you’re saying. How about you. So who’s the biggest person? Who was the person in your life motivating you the most?

Carolyn Routh 25:06
Daniel, definitely. He’s the one that got me started playing bass. Turned out to be, and it was a little bit after the stroke, but still, again, with my hand. You know, I’m always, I’m always working on my hand and making sure that I still have the dexterity and things like that, and focusing. Have to focus a lot of mental power on my hand, and so play, learning to play bass was a great therapy for me, because it was engaging both hands at the same time. It was engaging my mind.

Carolyn Routh 25:37
And he’s, he’s the one that did that, he’s the one that pushed me to that he was always the one that was there for me to cry on his shoulder when I just felt defeated. Because there’s always those times there’s there’s always those times that you’re having a really bad day or or things just aren’t going right, and you have those moments. You have those moments of defeat, and it’s the best thing in the world when you’ve got somebody there, especially somebody that’s been there from the beginning and knew you before this happened, so they know where you’re coming from.

Carolyn Routh 26:07
And they know where you’re trying to get to. So he definitely, I got mad at him a lot of times when he was pushing me, because it’s like, just leave me alone. I can’t do that right now. But he kept pushing in a good way, in a positive way he kept pushing me, and it turned. He still teaches me a little bit, and I don’t know if he needs to now.

Bill Gasiamis 26:27
He probably does.

Carolyn Routh 26:31
He’s still my best friend through everything.

Bill Gasiamis 26:33
You can get mad at him still. I think you have permission to, you know, it sounds like you guys have permission to push each other, get mad at each other, get over it, and move on and and then notice the growth. That’s the beauty of it, right? Is notice there has been growth like I think for me, my wife’s not a pushy, pushy kind of person, but there’s been growth after the stroke, both mine and hers, because she had to deal with a stroke survivor at home who was quite debilitated for a long time, because it was about, you know that the difficult parts for us lasted.

Bill Gasiamis 27:13
One stroke in February 2012 another one in March 2012 another one in November, 2014 and then brain surgery. So the really extended period of time in the acute phase, you know, where shits going wrong all the time. And then after that is when we kind of start to learn how to Okay, let’s try and move back into routine, some kind of life, etc. But even then, she doesn’t have the experience to be a caregiver of a stroke survivor. She’s not a nurse, she didn’t study, she’s not a doctor. So that was interesting.

Bill Gasiamis 27:49
To go through all of that and we had to grow, because you couldn’t be the same dumb ass that you were before the stroke. At least I couldn’t, because it didn’t work. It wouldn’t work. You know, when you say emotional upset makes your diabetes worse. So does emotional upset during and after stroke and stroke recovery. It makes things worse. And the idea was to learn how to stop being emotional when it wasn’t necessary.

Bill Gasiamis 28:15
And then to be practical and to attend to the emotional part, the part where you’re feeling upset, mad, sad, whatever it is, so that you can not allow it to affect you in a negative way when you’re going through a tough time trying to heal your brain and and get your deficits under control somehow or recover somehow. So I love that you guys had the opportunity to dance around that time we did.

Carolyn Routh 28:45
Yeah, we did. It was, I don’t know, I don’t know where I would have been if it wasn’t for him in there and helping me through it. And even now, even now, he kind of, you know, when I’m having trouble writing or anything, sometimes he’ll sort of, for lack of a better term, take the blame. If I’m taking too long on something, you know, he’ll sort of field it for me so that, so that people don’t look at me strange. He’ll deflect, right? He’ll come step in and intervene and take, take some of the heat for me, if it ever becomes necessary.

Bill Gasiamis 29:15
I love it. That’s excellent. So what were the biggest challenges that you faced? Now, I know that you had a number of deficits, but what would you describe as the one that was the biggest challenge to deal with, with regards to stroke.

Carolyn Routh 29:28
Just being able to get back into my normal routine in my life without being scared all the time, because if I had the least little bit of a headache, or even if I didn’t really have a headache, but I was just sort of feeling bad That day, my mind always went to “Oh my gosh. Am I going to have another stroke? What am I going to do?” You know, do I need to be here? Be I just that probably was the hardest thing to overcome. More so than the physical, was the mental games and just being terrified that I was going to have another stroke or another seizure.

Carolyn Routh 29:59
And I have another seizure. Seven years post stroke, I had been fine, no problems at all, and all of a sudden, I just seized one day, but I was not on any medication. I wasn’t on any kind of suppressors, because I had gone for several months and not had any strokes that I kept pushing my neurologist to not be on it, because my mom has seizures, and she had been on Dilantin all of her life, and it had really played a number on her body with several things. And I didn’t want to do that, because I felt I’m still so young, I don’t want to go there.

Carolyn Routh 30:33
So he agreed to take me off of it, he said, but you can’t drive for three months. You can’t do this. You can’t do that. We got to make sure that this isn’t going to happen again. And it didn’t. I had no problems after three months, not three months. It was six months. After six months, I was fine, no sign of any any abnormalities. And then seven years later, I just had a seizure. That was another one that happened at the perfect time. I was in the bedroom, and I was walk, fixing to walk out of the bedroom and back into the living room, where Daniel was at.

Carolyn Routh 31:06
I started, for some reason, I just felt my legs start to tighten up, and in my mind, I thought, you’re going to have a seizure. And I launched myself onto the bed as I screamed for Daniel. And He came in there, and I’m half on the bed and half off season, and he got me to the floor and called the ambulance for me. But again, that could have been very bad. I could have fallen. I could have hit my head on or hit my head on a piece of furniture. Had a head injury from it, so I was really lucky. But even now, even now that I’m on seizure medications, because that happened again.

Carolyn Routh 31:41
I want to be on them now, because I don’t want that to happen again. There’s still that place in my brain that sometimes I’ll still go to, I’ve got a headache. Is this okay? Or or have a weird headache, like my pre stroke headaches were where they actually move. They’re in the back of my head, and the headaches would actually move. And I’ll have those occasionally, and I always tell Daniel, I’ve got this headache. It’s doing something else so that, God forbid if something else happens. He knows, he knows the symptoms that were happening before the incident.

Bill Gasiamis 32:15
Yeah, I have headaches all the time. It’s my I mean, it’s such a conversation. That’s all I bloody talk about, is the headache this, and the headache that, and I’ve been talking about it for years. I think I’m trying to remember when I first started sort of really talking about headaches post stroke, and it’s taken me, probably, I don’t know, maybe four or five years to discover that it was high blood pressure.

Carolyn Routh 32:41
Wow.

Bill Gasiamis 32:42
Yeah, so recently, I got diagnosed with high blood pressure because the headaches were so severe. They were taking so that they were around for so long that I couldn’t do anything. I was, you know, my whole days would go in, you know, thinking if I do this, if I do that, or if I avoid this, or if I don’t go there, or all sorts of things.

Bill Gasiamis 33:03
And became high blood pressure was the issue. Took the meds, and then, as a result of that, the headaches go away. The blood pressure is under control. But when I was being die, when I was going through it for five years, or whatever it was, there would be spikes of high blood pressure.

Bill Gasiamis 33:19
So it wouldn’t last for days. It would last for a few hours, and then it would settle down. It would last for half a day, and then it was settled down for a few days. And I had days in between where everything was fine for a long, long time, and now it’s just ongoing and constant. So now the battle is, how do you you know, Can I do something to improve my blood pressure? But I’m not overweight, I don’t smoke, I don’t drink, you know? I haven’t got any of the risk factors. And it’s like, well, I can’t cut out that stuff to improve my health and well being.

Bill Gasiamis 33:52
So what do I do? What else is there? So now we’re doing a barrage of tests to discover, is it because my blood vessels are closed up. Is it because of some other condition? Is it a liver issue? Is it a kidney issue? What are the issues? So we’re trying to get to the bottom of it, and it’s a bit of a blow to me. Like, I kind of said to my wife, I had a bit of a pity party moment. I said, like, how much more shit Do I have to deal with? What else has to go wrong? You know, like I’m over it. I just want to have a smooth run for a little while.

Bill Gasiamis 34:25
I don’t want to think about another headache. Could it be this? Could it be that? But it is not my journey. Obviously, I don’t get to choose, but I get to take action and respond and be proactive about, how? About how I might be making things worse. So I get to have a opportunity to reflect like, okay, am I I’m not, but if I was, I’d be able to go like, am I smoking? Should I stop that? Am I drinking? Should I stop that? And so on, but, and now it’s like other things, so looking deeper to find more things that might be and all.

Bill Gasiamis 34:59
Also accepting the possibility that maybe it’s just me and my body, and the fact that I am here on the planet where, if it was any other generation of mine, you know, before us, medical help for Brain Hemorrhage wouldn’t have been available in the way that it was for me. So maybe, you know, maybe I’ve dodged one bullet, but in but I have to deal with all the stuff that comes with life, the gift of life after stroke, and that part of that is you have to jump over more hurdles, I don’t know.

Carolyn Routh 35:34
It’s the great mystery of life.

Bill Gasiamis 35:35
It certainly is. And that’s, you know that’s, that was my little philosophical rant. You know that my lovely philosophical rant to try and wrap my head around, because that’s what I find myself doing all the time. And my mum’s favorite question is, how’s your head? And it’s like, it’s good today, Mom, it’s good. Ah, thank God, she always does that. Oh, thank God.

Bill Gasiamis 35:57
And as I we’re on top of it. I’m handling it, I’m taking my meds, and I’m making sure that I’m that I’m not being slack about it, because I’ll tell you what it’s I don’t want to go down that path again. We’ve been there, done that. We just want to move on, right? We want to get on with our lives. Did Did you have a rock bottom moment where things felt like real bad and you didn’t know if you were going to be able to get back to life.

Carolyn Routh 36:25
I don’t think I would call it one rock bottom moment. There were a lot of days, there were, there were a lot of days through that entire time period that I felt like that. You know, am I ever I’ll give you an example, and this is, this is minor compared to everything else, but it was major to me at the time. It’s amazing how many things really aren’t that big of a deal, but when you’re going through that physically and mentally, it becomes a big deal in your mind. So not long after I came home, I had gotten lots of emails and well wishes from a lot of family and friends and some people.

Carolyn Routh 37:04
Just from that I’ve met on the road with the band, and I told my family, don’t answer any of those emails. I want to be the one you know. Don’t delete anything. I want to go through. I want to read every email, and I want to respond. When I came home, I couldn’t sit up for very long. There were no laptops. There was just the desktop computer. And so sporadic times I would feel like sitting up for a while, and I would go, go through these emails, and I would read one and “Oh, it’s so sweet” And I want to respond to it, and I couldn’t type.

Carolyn Routh 37:35
Anyway, I’m a hunt and peck or typing. So I would think, Okay, this is what I want to say, and I’m looking at my fingers very, very meticulously and hitting the letters and the numbers, and I finally get this sentence all the way out, and get my hand working, and I would look back at the screen and there were no spaces in the sentence. And I’ve always told everybody, the space just fell out of my head because there were no spaces in the Senate.

Carolyn Routh 38:00
And I got so frustrated at that, and that was another thing. Am I ever going to be able to put these pieces together? Am I ever going to be able to sit down and write a letter to somebody or type something to somebody, you know, just the normal things that you don’t think about in life. You don’t think about when you want to write something down, you just write it down. There’s, there’s not really a lot of thought process that goes into that, other than composing it in your brain. And I couldn’t do those things the the simplest things in life. I had to struggle with eating.

Carolyn Routh 38:32
I still had to struggle picking up a fork. I could eat with the fork myself, but I still had to think about every movement of my hand and what I was doing. And that was very frustrating, because I had always been very independent, you know, leave me alone. I’m going to go do what I want to, and it’s my life. I’m going to I’m going to go do this, and I couldn’t do that anymore. I had to kind of be chained to my circumstance. Yeah, that was really tough sometimes.

Bill Gasiamis 38:59
You know the no spaces thing? That I get a lot of comments on YouTube with no spaces.

Carolyn Routh 39:06
Yeah, hey, somebody else is dealing with this too.

Bill Gasiamis 39:08
Yeah, they definitely are, because and typing and rewriting and all that kind of stuff becomes a challenge, and it was for me for a short amount of time. But, yeah, it’s very interesting to come across a slab of writing with no spaces whatsoever in between.

Carolyn Routh 39:25
Yeah, that’s how I felt when I looked at my own writing. I wouldn’t let it go out with that. Now I got to go back through and I got to find where the space is supposed to be. Some of those times I would, I would just work on one thing, and then I had to go lay down, because I still had trouble sitting up for long periods of time. Then, because I just, I mean, you know, your hope it has such a great effect on your entire body. You’re just exhausted all the time. At least I was. I had no strength. And I don’t know if that was totally because of the strokes, or if it was just.

Carolyn Routh 39:56
I just been down for so long, and even then, y’all couldn’t get up and. Exercise. There’s a lot of things that I wasn’t able to do. I was walking, but I wasn’t walking very well, and there was just so many components going on that I’m trying to piece together and make work again. So it was very challenging to go through that.

Bill Gasiamis 40:18
Yeah, but absolutely, it doesn’t never stop getting challenging. That’s what’s really interesting. What What have been some of the strengths that you’ve discovered in yourself that that you didn’t know you had?

Carolyn Routh 40:28
I always knew that I was a very determined person, but I think I learned just how hard headed I was just pushing myself. Obviously, Daniel was pushing me a lot, but pushing myself to try to get beyond mentally and physically, and I found I had a lot more strength than I thought I had to be able to do that and get there. And I’m a really emotional person, and I let my mind play a lot of tricks on me, and I don’t smoke or drink either. So it’s not that, you know that I’m doing something that’s causing that. It’s just my brain, and I am a what effort person.

Carolyn Routh 41:10
So my mind gets to going and all that stuff, and I just really have to take a step back and not do that. And a lot of times I’ll go back to the point that I was at when I had my strokes, and think, you know, I feel like I didn’t die then, because I still have a purpose in life. And I try to remind myself of that all the time. You know, you this bad stuff didn’t happen to you, because you’ve still got to be here.

Carolyn Routh 41:36
So that’s a that’s a strength, I think that I’ve found somewhere to go when I’m in one of those emotional moments and I’m strong enough to go there and bring myself out of that place that I’m at that was a big deal for me. That’s still a big deal for me, because I just I get so upset over the least little thing and trying to hide that’s tough too.

Bill Gasiamis 41:58
Yeah, that’s important to be able to go somewhere and just stay there uncomfortable and just alright, I have to be here for a little while, and then I’m moving on. I’m not going to stay there forever, but I’m going to experience the feeling and then work it out later. That’s the thing. Being comfortable with being uncomfortable is kind of how I sort of see it, and then going, okay, alright, I may or may not have learnt something from that.

Bill Gasiamis 42:24
I’m moving on now, and we can let it go and then tackle the next thing when it comes when it comes up. So the band I’m looking at the website, NU-BLU.com (nu-blu.com) that’s a good looking band there.

Carolyn Routh 42:41
Thank you. I’m really proud of those guys. They’re just awesome. They’re family, now traveled together so long and experienced so much of life together.

Bill Gasiamis 42:51
So how do you guys go about getting gigs? It seems like also you’ve got a section for free music. You’ve got a, I imagine a paid section like, how does the band work? What in this day and age when the music game is controlled by Spotify and iTunes and people like that? How do you guys create a successful career or a band?

Carolyn Routh 43:16
Touring. We tour very heavily. Daniel does a lot of the booking. Primarily booking that he does is for more bluegrass events, because he’s done that for so many years, and he’s got so many connections in that field. We have a booking agency in LA called Harmony artists, and they do a lot of PACs and fairs and like business conventions and things. And they have really, they, they’ve really come on and sort of taken us into an entirely different circle working than we were at. So that’s that’s a big thing. It’s just touring for income. Streaming, that’s where it’s at.

Carolyn Routh 43:59
Now the sad part? Well, the good part about streaming is more people hear your music, which leads to more people coming to shows, which leads to more ticket sales, more income. However, the challenging thing with streaming is streaming pays very, very little per stream. I mean, it’s like hundreds of a cent or less that you get for each play on most of these streaming platforms.

Carolyn Routh 44:23
So you’re not really, you’re not really making anything off the music, unless you’re one of these huge, mega stars that you know, sell millions and millions and millions of records. When you used to have physical product, we do still have physical product on our table. Hold on a minute. I got somebody calling in. I’m trying to get away from this. We still do have physical product on our table, but we don’t sell as much of that now that’s one of those things that has just kind of fallen by the wayside.

Carolyn Routh 44:52
Daniel always said, when CDs finally went away, it would be when car manufacturers stopped putting CD for. Players in cars, and that’s about what happened, because people would come and they would buy they would come to the table and meet the band and buy a CD, and then they would stick that CD in the player on their way home and listen to the music. And now there aren’t CD players, and a lot of cars and people, people resort to streaming.

Carolyn Routh 45:20
It started with the younger generation, for lack of a better way to put it, but it’s really spread, and most people are going to streaming platforms now to hear their music.

Bill Gasiamis 45:31
Yeah. So what’s really cool is, I’m looking at your upcoming today. What is today the October the 16th, where you are, because it’s October the 17th, where I am, it’s the 16th. So you, you’re playing a gig tomorrow, the next day, six days after that, seven days after that, and so on. And you guys have got shows booked out until February 13, 2026

Carolyn Routh 45:57
Yeah, and that’s a light schedule right now. They’ll still please to fill in on that. They’ll they’ll still be more shows to to fill in on that schedule. So and I, I never know when something’s going to show up that he’s booked. I don’t. I always tell everybody that my job in the band is to be on the bus at the right time. Know when to get off and play a show and then get back on the bus again. He does all the routing and all that fun stuff so that I don’t have to worry about it. Yeah, good partnership like that.

Bill Gasiamis 46:28
How much time do you guys spend away at any one time? What was the maximum amount of time?

Carolyn Routh 46:33
When we first started back in 2003 we actually went full time in 2011 we we quit our day job, so to speak, and went full time in 2011 and when we did that, we would make seven week runs at the time. We go out for seven weeks, we’d come home for three or four days, and we were right back out again for five, six or seven weeks. So it was a very, very grueling schedule. We spent, we live on the east coast, in North Carolina, we spent more time on the West Coast, in California and Washington and Nevada and all those states than we did on the East Coast those first three or four years.

Carolyn Routh 47:10
Again, very grueling schedule. Now that we’ve been at it for a while, we finally come to a point that the most we ever go out at a time is usually two weeks or less, and then we come back home, we’re home a week or so with just, you know, weekend stuff. And then we’re we’re out on the weekends, but we’re not out on these really long trips like we were before. We average about two 200 – 250 days a year on the road, give or take.

Bill Gasiamis 47:39
Wow.

Carolyn Routh 47:40
Yeah. We travel in a bus, though. So it’s my home away from home, and that makes it a lot easier. I don’t think I could do it, having to fly and hotel hop. I just don’t like airplanes. I hate to fly. I’m not very fond of Heathrow is a big Air Force. There’s a lot to navigate, especially when it’s international.

Bill Gasiamis 48:04
You guys are amazing. So life after stroke is pretty full on for you.

Carolyn Routh 48:09
It is, and I that’s really a good thing, because it does keep my mind occupied with positive things, because I love to go play. I absolutely love what I do. I don’t think there’s a lot of people in this world that get to do what they love for a living and just just be out and go and do and I love the travel. I’ve got to see so many things, so many things that I never thought I would get to see in this country. And I was in Paris two years ago, and I never thought in my life I would stand under the Eiffel Tower.

Carolyn Routh 48:41
So, that was a real rush. We saw Stonehenge. We actually were driving around London the day of the Queen’s funeral. So that was, we talked about going to it, and I just, I could not get there’s crowds. I absolutely could not so, but it was, it was pretty neat to know that that was going on and we were right there.

Unknown Speaker 49:00
Well, yeah, what’s the deal with crowds? Just overwhelming.

Carolyn Routh 49:04
The time that it takes to get in and get out, and just so much chaos. And I knew that that was going to be chaos and standing that long. And I love people. I love being around people, but when people are shoved in like sardines, I get really uncomfortable. I always tell everybody I don’t mind crowds. I just love them more when they’re in front of my stage than if I’m in them. That’s all it is.

Carolyn Routh 49:33
It’s just a discomfort for me, just being packed in so tight for so long. And, you know, covid came along and it was the six foot rule. And I’m like, you know, I don’t mind this so much. I still have my space, but I can see people. I can talk to people.

Bill Gasiamis 49:48
That worked well for you. What sort of crowd sizes attend the shows?

Carolyn Routh 49:53
It varies depending on where we’re at. I would say average for most like theaters. Or something like that. We play a lot of 300 – 400 seat theaters. They’re not huge, but they’re really nice size. You know, sometimes there might be 100 people in the audience, sometimes there might be 300 people in the audience. We’ve played venues that there’s like, eight to 10,000 people at some outside venues. So there’s a really broad range. And we also occasionally do house concerts where you might have 20 people in the room or 30 people.

Carolyn Routh 50:27
And believe it or not, those are a lot of fun because it gives you a chance to get more personal with people and connect. And I like that. I like doing some of the small stuff too, and being able to make new friends and actually get to know people a little bit.

Bill Gasiamis 50:42
Some of my most favorite things that I’ve attended were small, intimate, whether they were musical shows or theaters or whatever they were and plays. And it’s because you get to really feel like you’re part of the action. And then you get to meet your you know your hero, and you ask them questions, and they answer your question. And it’s really fun. I love it. We did. We had an opportunity to go and watch a theater in Melbourne quite a few years ago, which was about the famous Greek American opera singer Maria Callas, who lived in the 50s, 60s and 70s, and kind of.

Bill Gasiamis 51:23
She even married Aristotle Onassis, who was Jackie Kennedy Onassis husband. So, like, it was a she was a big deal. She was the biggest opera singer in the world. Anyway, the play about her was done in Melbourne, and we went along and saw her, and the actress that played her was just phenomenal, like it just felt like she had embodied this person. And we were sitting in the front row of this theater, which maybe held, I think it might have held maybe 200 – 300 people.

Bill Gasiamis 51:53
And what was and is, if the show and her performance and the performance of all the other actors wasn’t amazing enough. There’s a part in the in the presentation, where she picks a few people out of the crowd and interacts with them, as if it’s part of, you know, a live teaching so, so the way it was set up, she was pretending to be the show is about her teaching some students how to be artists, opera singers, etcetera. And it was done like as if you were at a university and then you were in the audience.

Bill Gasiamis 52:30
But you were a student listening and learning from her presentation, that kind of thing. And then she picks me out, and she points at me. She goes, you seem to have a laugh on your face all the time, and somehow she made that part of the show. And what a treat that was. It was such a, you know, it takes, and I’ve been to heaps of shows, but that one is even more special, you know, because you become part of it.

Bill Gasiamis 52:54
You interact with the audience, and it’s just brilliant. So I know what you mean about those home shows? I couldn’t imagine anything better than having my favorite band in my backyard. That wouldn’t be anything better than that, even if I and if I could do it without anyone else, then I just had them to myself. That would be amazing.

Carolyn Routh 53:16
You can make that happen. If you have enough money, they’ll come.

Bill Gasiamis 53:18
Well, one of my favorite bands is ACDC, so they probably won’t need to, but they are touring in Melbourne in about a month, and I’ll be going to see them for about the sixth or seventh time.

Carolyn Routh 53:29
That’s awesome. My son, we were on the road somewhere, and I get this phone call from my oldest son, and all I hear is this really loud music, and I’m like where are you at? He said, ACDC, I’m going to kill you. I didn’t get invited.

Carolyn Routh 53:46
Axel Rose was singing with him. We got a big treat there, getting to see Axl Rose along as ACDC.

Bill Gasiamis 53:54
Wow. Okay, yeah, so I think this is probably going to be one of their last tours. Angus Young is just like an old man. Now, Brian Johnson’s struggling with other challenges. So if they pull it off, I mean, it’s going to be amazing, and maybe the last time. So we’re, I’m sure it’ll be great. Ah, it’ll be sensational. I first time I saw them, I was a teenager, and it was for the money talks to her. I had never seen anything like it. I just, I was just blown away. I couldn’t believe that I was there. And then that particular album cover had a fake American dollar with Angus on the in the middle.

Bill Gasiamis 54:32
They threw them down from the top of the ceiling, and everyone was running around to pick up the Angus money. And it was sensation. I still got a couple of those in my album cover. Now, maybe it doesn’t matter. I’m not getting it, rid of it. I’m keeping it right. So, yeah, fantastic. I love it. I love it that you are able to perform and do the tour and be on the road as much as you can, and you’ll live. And you know, you’re living your life, and I love that it probably is more meaningful for you now than post stroke. I have a sense, it is.

Carolyn Routh 55:09
It absolutely is, because there’s, there’s things that I didn’t think I’d ever get to do, especially after the strokes. You know, who would have thought, who thought that I would be able to go to Europe and just travel all over this country, go to Mexico, you know, the Bahamas, just all those fun things that I get to do on a regular basis. Now, just a bonus, right? Absolutely, absolutely.

Carolyn Routh 55:34
The Grand Canyon, that’s probably my favorite place of any place I’ve ever been. I’ve been there multiple, multiple times, and standing on the rim of the Grand Canyon and looking out across it. No movie, no photograph, does that justice. It’s a totally it’s the Grand Canyon. Isn’t just a view, it’s a feeling. It’s a feeling that kind of reminds you just how small.

Bill Gasiamis 56:00
Yeah, and how insignificant you are and what and how it’s necessary to just tell your head to be quiet and forget the stories and just move on. Absolutely, yeah, if you if there’s something that you could share with people who are listening or newly diagnosed that may have come across this about your journey with stroke, what would you like to say to them? What would you share?

Carolyn Routh 56:22
Try as much as you can to stay positive, and that’s that’s a big thing to say, because the negativity will eat you alive from the inside, and that’s just going to add more difficulty to everything you’re going through. Something I like to tell people is, find your happy. And some days, that’s a lot harder than others. But if you look forward, if you’ll just find one little thing every day, just one positive thing. It doesn’t have to be major. Just one positive thing, it will help you through the rest of your day. Inevitably, that one small thing can help you through the rest of your day.

Carolyn Routh 57:01
So find your happy life is too short. I used to be horrible. When something would go wrong, I would say, I hate my life. Hate my life. This happened, and I hate my life. And then I had my strokes, and I figured out, I don’t hate my life. I love my life. I’m thankful every moment to still be here. And since then, I never say I hate my life. I haven’t said it since then. I will never say it again. I might hate the circumstance that I’m in at the moment. You know, I might hate something that’s happened, or I might hate a bite of food that I just ate. But I never say I hate my life.

Carolyn Routh 57:40
I think that’s very important, and the finding you’re happy is very important. If you just remember those two things, just put one foot in front of the other figuratively, and just push on to the next thing. Just keep pushing on. Don’t give up. Don’t feel like you’re at your end and there’s nothing left, because there is something left. It may not be what you expected it to be, but there’s something else out there.

Bill Gasiamis 58:07
You know, that allocating a word like hate to your life because of a moment, it’s such a trap that we find ourselves in. So that whole because that moment was shitty, you know, my life is shitty, and we don’t realize, I think most of the time, we don’t realize that we’ve done that. And to be able to have the distinction to go that moment was shitty, or that food was shitty, or that person was shitty, not all people are shitty, or not all experience are shitty. That’s it lifts a massive burden off your shoulders.

Bill Gasiamis 58:37
It actually is more accurate as well, because moments are shitty, but all the moments in between, they don’t have to be sort of wrapped in the same attitude that you had to the moment before, even 24 hours ago or 48 hours ago, or whatever. So that’s a really great distinction, I think, like people in recovery might have a lot of shitty moments, but pay attention on the moments in between that are not shitty, and do not tar them with the same brush, because then it films feels overwhelming, and that’s one way you can improve your mood.

Bill Gasiamis 59:14
Really simply, is just by being specific with what’s happening right now, rather than generalizing Yes. Carolyn, thank you so much for joining me. I thoroughly enjoyed our conversation. I really appreciate you reaching out. It’s great to hear your story, and I’m going to see if I can get some of your music, I think.

Carolyn Routh 59:35
Okay, great. Do you need me to send you any links? Because I can do that.

Bill Gasiamis 59:39
Well, why don’t we have a discussion about that right now? If someone went to get some of your music, where’s the best place for them to get it, where you guys get a little bit of the revenue, and it doesn’t go to the streaming services.

Carolyn Routh 59:56
Pretty much everything, pretty much everything right now is streaming, unless you want. You order a CD and order that from our website, new blue com, n, u, dash, b, l, u.com, so you can still order physical product directly from us. That’s where we get the biggest bang for the buck. But you know, if you’re going to listen to streaming Spotify, Pandora, Apple Music, I’m sure those others, those are the big three for me personally that I’ve got on my phone.

Carolyn Routh 1:00:24
But I know there’s a lot of other streaming services. Everybody’s got their favorite platform. So, you know, just go there, and even if it’s just a 100th of a cent, I want you to listen to the music. I want you to enjoy it. I hope you love every minute of it and pass it along to all your friends.

Bill Gasiamis 1:00:41
Yeah, do you guys ship internationally?

Carolyn Routh 1:00:43
Yes, we’ll ship internationally.

Bill Gasiamis 1:00:45
Wow. Okay, so the CDs start from 9.99, which is a mega deal, like, that’s a sensational and there’s, at least there’s six albums, and then there’s the way you’ve been vinyl and the way you’ve been CD. So there’s seven albums, and one of them is a vinyl.

Carolyn Routh 1:01:03
Yes, it is. That’s the first time we’ve pressed vinyl. That’s kind of exciting to us. You’re growing up. That’s all I listen to my ACDC. Vinyls are right over there. So vinyl was a big thing, even when it scratched. You get so mad that your your favorite vinyl scratch. So when we decided to press vinyls. It was so exciting. I remember we got in. They send you the test pressings that don’t have any of the artwork, just to approve them. And we got in the five test pressings.

Carolyn Routh 1:01:29
We had to buy a turntable. We didn’t even have one. And my husband went and got a turntable and put it on. And he was like a school girl. He was so giddy. There’s just something different about a vinyl, and hold it in your hand and to realize that, hey, we have a vinyl of us.

Bill Gasiamis 1:01:45
It’s tactile. You get to see it spinning, you know, you put the little needle on. It’s not like a CD where it goes into a little box and it disappears and you don’t really see it. It’s tactile. You know, you have to touch it a lot. You have to be careful with it, you know, you have to position the needle, you have to close the lid on the turntable. There’s so much to it. It’s brilliant and and then you get that, you know, crackly sound that the vinyl makes just before the track starts.

Carolyn Routh 1:02:11
There’s a lot more tone in vinyl. A lot of people catch that, but that whole process, it’s just different. It’s just old school. It. It it brings back a past era of when that was the thing, and everybody was so excited to go down to the local record shop and buy a record. So I think I like the where things are now. I like music being so readily available and people can listen to it, but I kind of miss those days of going to the store and buying a record.

Bill Gasiamis 1:02:42
Clicking through all the album covers and just going one at a time until you find something that you looks interesting. So for anyone watching and listening, go to NU-BLU (nu-blu.com) and go to the store, where you’ll be able to see those CDs and get them, and get one or two.

Carolyn Routh 1:03:04
And we’ve got, we got new music coming out. We’re working on a new CD right now, so it would be great. You want to listen to it. Go on to Spotify Pandora, any of the streaming platforms, Apple Music, and go ahead and like, join our page there, and that way, when the new music comes out, you’ll be one of the first to hear it.

Bill Gasiamis 1:03:21
Fantastic. Of course, we’ll have all the links in the show notes, so people can go there and find them and follow you guys on socials. Thanks so much for joining me. It is an absolute pleasure to have you on the show.

Carolyn Routh 1:03:31
Nice meeting you. Enjoy talking to you, whole lot.

Bill Gasiamis 1:03:33
That was Carolyn J. Routh, sharing her powerful story of fear, faith and determination after stroke, a huge thank you again to Banksia tech for helping make this episode possible. Their ongoing support and the hands and rehab glove by Cerebro keeps hope and progress within reach for stroke survivors everywhere. If Carolyn’s story spoke to you, remember, recovery isn’t about being fearless, it’s about moving forward despite the fear.

Bill Gasiamis 1:03:59
You can find my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com. And to support the show, you can go and join our Patreon at patreon.com/recoveryafterstroke. Thanks so much.

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The post Carolyn J. Routh Stroke Recovery Journey: Overcoming Fear After Stroke appeared first on Recovery After Stroke.

When Anshul Bhadwaj collapsed at his gym in Delhi at just 27 years old, he thought his life was ending. The thunderclap headache, the dizziness, the vomiting he was certain he was having a heart attack. What he didn’t know was that his brain was bleeding, and the hemorrhagic stroke he was experiencing would challenge not just his ability to walk, but his sense of manhood, dignity, and identity.

What Anshul shares in this conversation is what most stroke survivors won’t talk about: the loss of erectile function, the inability to control his bowels and bladder, and the profound shame that came with both. But his story isn’t just about loss, it’s about the courage to speak openly about these taboo topics, the journey back to dignity, and the mission to ensure others don’t suffer in silence.

Anshul was living the demanding life of a political journalist in India long hours, intense deadlines, and relentless pressure from his news channel manager. The stress was so extreme that even when he was hospitalized for hypertension in 2023, his manager told him to bring his laptop to the hospital and work from his bed.

“Life of a journalist in India is very stressful,” Anshul explains. “It looks good from the outside, but not good from the inside.”

That unmanaged hypertension, blood pressure exceeding 180/86 despite medication, was a ticking time bomb. On February 27, 2025, while working out at the gym, Anshul felt a sensation behind his brain, followed by severe dizziness. Within moments, he collapsed.

Because stroke awareness in India is remarkably low, no one at the gym, including Anshul himself, recognized what was happening. He thought it was a heart attack. Even when a friend drove him home and his father rushed him to a chemist, they were given electrolytes for what they assumed was low blood pressure.

It wasn’t until hours later, when his sister noticed he was having seizures, that the family finally took him to the hospital for a CT scan. The results were devastating: a brain hemorrhage. One junior doctor even said within Anshul’s earshot, “He’s going to die soon.”

After emergency angiography and coiling to stop the bleeding, Anshul survived. But survival came with challenges that went far beyond the left-sided paresis that left him unable to walk or use his dominant hand.

“I lost my manhood at that time,” Anshul shares, his voice steady but vulnerable. “I’m sharing this for the first time.”

For approximately one month after his stroke, Anshul experienced complete erectile dysfunction. As a 27-year-old single man, the psychological impact was crushing.

“I used to think, what will happen in the future? Nobody will marry me. Nobody will accept me,” he recalls. “I was thinking I was not a man now.”

The shame was so profound that he couldn’t share this with his family or doctors. In Indian culture, discussing sexual dysfunction carries immense stigma; people judge, people assume you’re “less of a man.”

But what Anshul eventually discovered through his own online research was that erectile dysfunction after stroke is a common neurological symptom, not a permanent condition. As his brain healed and his testosterone levels recovered, his erectile function gradually returned over the course of several weeks.

“I want people to know about this. This is not a shame thing. If something like this can happen, people need to accept it. This is happening to them too.” — Anshul Bhadwaj

Perhaps even more challenging than the erectile dysfunction was the complete loss of bowel and bladder control. For the entire time Anshul was hospitalized for 35 days, he was unable to control when or where he would urinate or defecate.

“I used to pee in the hospital bed only,” he explains. “I was wearing diapers. I would vomit everywhere. I couldn’t control anything.”

What made this experience even more traumatic was the response from some of the hospital nursing staff. Rather than showing compassion for a neurological symptom, some nurses expressed frustration and even mocked him.

“They used to ask me, ‘Why don’t you tell us to take you to the washroom? Why are you doing this in the bed? You’re wasting our time,'” Anshul recalls. “I used to tell them, ‘I can’t control it. I don’t know why I’m doing this. I want to control it, but I can’t.'”

This lack of understanding, even among medical professionals, highlights how little awareness exists around the full spectrum of stroke symptoms, particularly those that affect intimate bodily functions.

The good news: Like his erectile function, Anshul’s bowel and bladder control gradually improved after returning home and beginning physiotherapy. Within a month of leaving the hospital, he no longer needed diapers and could independently use the bathroom.

The physical challenges were only part of Anshul’s journey. The psychological impact of losing these fundamental aspects of bodily autonomy sent him into a dark period of shame and fear.

When he first started attending physiotherapy sessions, he would wear a traditional Sikh head covering and a face mask, not for COVID protection, but to hide his identity.

“I was scared people at my neighborhood would recognize me,” he explains. “They would see how I was walking and start laughing at me. I didn’t want to face people.”

The breakthrough came when Anshul began working with a mental health therapist who helped him confront his fears directly.

“She told me, ‘These are your fears. This is not reality. Stop wearing this mask. Don’t come again wearing this mask in front of me,'” Anshul remembers.

That single month of therapy was transformative. It helped him reclaim his dignity and realize that his worth as a person and as a man wasn’t defined by his temporary physical limitations.

Anshul’s story reveals critical gaps in stroke care, particularly around:

Today, six months post-stroke, Anshul continues to work on his left-hand motor skills and is waiting for medical clearance to return to the gym. His blood pressure, while improved, still requires monitoring.

But something more powerful has emerged from his trauma: a mission.

“I want to spread stroke awareness in my country to every household,” Anshul declares. “I want to have a stroke awareness series on my news channel. In India, awareness is very low. People don’t even know what stroke is.”

His willingness to discuss erectile dysfunction and bowel control openly, topics that carry immense shame in his culture, is already breaking down barriers and helping other survivors realize they’re not alone.

Anshul’s message to anyone facing similar challenges is clear and hopeful:

“Don’t lose hope. Everything will get back. If you’re not able to walk right now, you will walk. I’m walking. I’m talking properly. Everything will get better with time. Don’t fear anything. Nothing is permanent in this world.”

He’s right. Just as seasons change, so too do the challenges of stroke recovery. What feels impossible today, whether it’s walking, regaining sexual function, or controlling your bowels, can improve dramatically with time, proper treatment, and compassionate support.

If you’re experiencing erectile dysfunction after stroke, bowel control issues, or any other symptom that leaves you feeling ashamed: you are not alone, you are not less than, and there is hope.

Read Bill’s Book: Learn how stroke can become an unexpected catalyst for growth → recoveryafterstroke.com/book

Join the Recovery After Stroke Community: Get access to exclusive recovery strategies, connect with fellow survivors, and participate in live Q&A sessions → patreon.com/recoveryafterstroke

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At 27, Anshul lost more than movement after his stroke. His brave truth about erectile dysfunction & dignity is changing stroke conversations.

Anshul’s Instagram
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Highlights:

00:00 Introduction and Acknowledgments
01:44 Anshul’s Life Before the Stroke
04:24 The Day of the Stroke
08:31 Seeking Medical Help
18:47 Recovery and Rehabilitation
23:10 Impact on Personal Life and Relationships
29:40 Erectile Dysfunction and Bowel Control Issues
36:32 Positive Changes and Future Goals
40:52 Anshul Bhardwaj: From Fitness Icon to Fighting Spirit
48:57 Spreading Stroke Awareness Across India

Transcript:

Bill Gasiamis 0:00
Hi everyone, and welcome back. And before we dive into today’s powerful conversation, I want to take a moment to thank some incredible people who make this podcast possible a heart valve. Thank you to everyone who’s been leaving comments on YouTube, your stories, questions and encouragement. Mean the world to me and to other survivors who read them to those leaving reviews on Spotify and Apple podcasts, thank you for helping more people discover these conversations.

Bill Gasiamis 0:27
And to everyone who’s purchased my book The Unexpected Way That A Stroke Became The Best Thing That Happened. Thank you for trusting me to be a part of your recovery journey. And finally, thank you to those of you who watch the ads instead of skipping them. It might seem small, but it genuinely helps keep this podcast going. This episode is brought to you by Banksia Tech, proud distributors of the Hanson Rehab glove by Syrebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into your journey.

Bill Gasiamis 0:59
Now, today’s conversation is unlike any we’ve had before. I’m joined by Anshul Bhardwaj, a 27-year-old journalist from India who survived a hemorrhagic stroke earlier this year. What makes this episode so powerful is Angel’s courage to discuss something most stroke survivors won’t talk about, the loss of erectile function, bowel and bladder control and the profound shame that came with it.

Bill Gasiamis 1:24
This conversation is raw. It’s vulnerable, and it’s incredibly important, if you or someone you love is struggling with these hidden challenges of stroke recovery, please know you’re not alone. Let’s get into it. Anshul Bhardwaj, welcome to the podcast.

Anshul Bhardwaj 1:39
Thank you, sir. I’m big fan of yours. It’s a big pleasure of mine to come into your podcast.

Bill Gasiamis 1:44
Tell me a bit about what life was like for you before your stroke.

Anshul Bhardwaj 1:49
Actually, live for my struggle, very hectic. I’m a journalist from India, so I used to work with a new news channel, so it was more of a hectic schedule, going to the office, coming back to home, stressful lifestyle. I’m telling you this again, life of a journalist India is very stressful. It’s very stressful. It looked good from outside, but not good from inside. Life. Journalists in India is very stressful. Job, very hectic.

Bill Gasiamis 2:17
Is that because you have to meet deadlines and you’re working a lot of hours.

Anshul Bhardwaj 2:23
Yeah, we have to meet the requirement required, require, requirements of the news channel, of the chairman of the news channel. We have to meet the requirements of the news channel chairman.

Bill Gasiamis 2:33
And what was your specific task at the news channel? What did you collect news information for? What was the purpose?

Anshul Bhardwaj 2:41
So, actually, Sir, I used to work on political weight. So, you know, I told you before, also, I used to write News Channel, News Headlines, news updates, which you see on live TV.

Bill Gasiamis 2:54
At the bottom of the screen. You see information coming at the bottom of the screen. Okay, so you used to collect that information?

Anshul Bhardwaj 3:02
No, we don’t use to collect the information. The information used to come to us. We have to write in an hour of on forms, model letter, 60 characters, 60 to 70 characters. Yeah, there’s a limitation.

Bill Gasiamis 3:16
I see. And How long had you been doing that job for you?

Anshul Bhardwaj 3:20
So, I started in November 16, 222, I was working there for around right now, if, if we calculate it, it’s been three years. I have completed my three years with the company. So before my stroke, I completed around the two high two years with the company.

Bill Gasiamis 3:37
Do you have to go to university to get qualifications to become a journalist.

Anshul Bhardwaj 3:42
Yes, sir, I have, I have done my poor graduation mass communication.

Bill Gasiamis 3:46
And tell me about the day of the stroke. How long ago was that? And how old were you?

Anshul Bhardwaj 3:52
So, I had my stroke in Feb. 27, 2025 this year only. I’m 27 years old, quite young for this job. So, so it was, it was normally hectic schedule for me. Schedule day for me. I was not happy with the work. While, you know, I told you, my manager used to very pressurize me for the work. So it’s a hectic job. Life of a journalist in India, very hectic, very stressful job. So, I was in the office.

Anshul Bhardwaj 4:24
I was not happy with I was talking too much. I remember at pm in the evening, so I were telling her that I will skip the gym today. I will not go to the gym. I don’t want to go to the gym today. I go back home, come back home. So, while coming back from the office to the home while driving, I made up a man, let’s not skip the gym. Today I go to the gym. So that time, I decided I go to the gym at 8pm only.

Bill Gasiamis 4:48
And then you were at the gym doing some routine exercise, and then you had a stroke.

Anshul Bhardwaj 4:54
Yeah, I had a shock during the gym only.

Bill Gasiamis 4:56
What did you notice? What happened to your body?

Anshul Bhardwaj 5:00
So I had, I sense a sensation behind this area of my brain. So everything, I experienced dizziness.

Bill Gasiamis 5:10
And did that make you feel like you were falling over? Did you feel unwell other than the dizziness?

Anshul Bhardwaj 5:16
Yeah, I was not feeling well. Everything was moving in front of me, the walls and all. I thought that I was having a heart attack, because, at that time, due to low awareness of stroke in India, so I didn’t know what stroke was before my stroke. No, not. No one in the gym even knew. So I just fell. I fell in the ground. So I actually knew I’m going to get something I would think of a heart attack or cardio.

Bill Gasiamis 5:43
Did somebody call for help? Was there an ambulance that arrived? How did you get help?

Anshul Bhardwaj 5:47
So, when I walk, when I got conscious, so I saw myself lying on the floor. So everybody was scared looking at me. You know, it’s a very scary moment. Everyone surrounding me, while looking in very me, looking to me on a in a very different way. What has happened to him? Why is fall off? So I vomited in that area, only people. Your people were very good at the time. They were helping me to they knew something bad had happened to me, so they were helping me. Let us drop to your hot, to your home. So they were asking me. They were gave me water to drink.

Bill Gasiamis 6:22
And then did they take you home? Or what happened? Did you go to hospital?

Anshul Bhardwaj 6:25
Yeah, there was one guy who who took me to the home. He told me that you’re, you are not well, because my face were drooping from left side. So he knew I was getting seizure also. So he knew something is wrong with him. Actually, anybody who does not know about shock will get to know something is going wrong with some this guy, Caesar, is something very different thing.

Anshul Bhardwaj 6:47
So, he told me, I will drop you to the home. Let’s go home. I’ll drop you. No, don’t worry. I’ll have I must thank him. He got me to the home. So when I came back home, so, I was thinking. I was just thinking what had happened to me, because I didn’t know that time was, stroke was.

Bill Gasiamis 7:06
And then was there somebody home with you? Did you have family at home, or were you home alone?

Anshul Bhardwaj 7:11
Yes. So I used to live with my father. When I came back home, he was not at home. So I just called my sister. I have my elder sister, so I called her, something is going wrong with me. I’m having a very acute headache, a thundercrack headache, so I’m not able to control it. So I don’t know what to do. I just need a sleeve for 1520, minutes. You just came back, come back to home. Just see me.

Anshul Bhardwaj 7:36
And nothing is wrong and nothing is right with me right now. I can die soon, I told her. So I was very scared. Actually, I didn’t know what was happening to me. I thought I was getting a heart attack. So I told her, something is going going wrong with me. I soon may get a heart attack.

Bill Gasiamis 7:52
But the headache, you had a very big headache, very it was a thunderclap headache, yeah. And then at some point they realized that it was more serious than a headache, and you went to hospital. How did you get to the hospital?

Anshul Bhardwaj 8:06
So, when I came back home, when I called my sister, she called my father, something is wrong with your son, just go back and see and he just came rushing to the home. And then he saw me. He I was vomiting all over the place, all over the place. At my home, I was in my bed. I was just vomiting everywhere, wherever I’m getting a space, I’m vomiting there.

Anshul Bhardwaj 8:31
So, he didn’t knew about the stroke. My father also didn’t knew about stroke. He just went back. He can he he went to the chemist. He told my son is vomiting everywhere after working out. So the camera thought, it was due to low blood pressure. He gave electrolyte to my father.

Bill Gasiamis 8:49
So is the chemist, the first place where you might have gone to get some support for some help.

Anshul Bhardwaj 8:56
My father went there and he gave electrolyte drink to my father actually came. Didn’t knew, my father want elder bill to explain this to my chemist, what are happening to me? He just say, my father, my son, is unconscious. He’s vomiting everywhere. So my chemist thought that he might be suffering for low blood pressure. Actually came. Didn’t you know? He didn’t saw me. So, he gave electrolyte to my father. He He told him that give him, he will be better.

Bill Gasiamis 9:26
And then you weren’t better.

Anshul Bhardwaj 9:28
No, even after doing the electrolyte, I was just vomiting everywhere. Just after half an hour, my sister arrived, so rushing, and one thing I want to thank my sister for this one, she noticed, she noticed that I was having a Caesar. Nothing is something is wrong with him going on right now.

Bill Gasiamis 9:48
And then at some stage, who made the decision to get you to a hospital? Did you go to a hospital?

Anshul Bhardwaj 9:54
So, it was around pm, at night time. So it. 8pm I had a stroke, so I went to the hospital at 12pm because I came to know something going wrong with me. You must experience yourself only why I’m doing this, why I’m omitting my body is not in mind control. You know you’re getting seizures. You are doing different type of things. You are your hand are moving yourself so you’re not able to control it.

Anshul Bhardwaj 10:23
So my sister told me, You’re you are not looking good. Let’s go to the doctor. So I was new from inside, something is going wrong with me that I decided, no, let’s go to the doctor. So I told you before, also, I was thinking of heart attack. So I thought, I will get the heart attack the CT scan. Then they took me to hold a CT scan.

Bill Gasiamis 10:42
The CT scan revealed that there was a bleed on your brain.

Anshul Bhardwaj 10:47
So, when they were two doctors who were treating me at that time. I was unconscious during the CT scan. I don’t know how I got consciousness, so I just they took my CT scan. That took my report. They saw my report. There was one junior doctor who was who got frightened looking at my report. He said, sir. He told his senior that, sir, he is going to die soon. He is getting so much bleeding, his nerve is ruptured. He will die soon. I told you also I was aware that time.

Anshul Bhardwaj 11:19
I hope I just heard him saying this, he’s going to die soon. I was so frightened that time, I was like, I’m going to die soon. I was just praying to God. God, give me just one more chance to live. Wow, that’s be confronting. Yeah, I was just praying to God. Just give me one more chance to leave. I will live my life to the fuller this time, give me one more chance. I don’t want to die today.

Bill Gasiamis 11:44
We’ll get back to more of Angel’s remarkable story in just a moment, including how he navigated the loss of bowel control and erectile function and the insensitive treatment he faced from hospital staff. But first, I want to tell you about Banksia tech, the proud distributor of the Hanson rehab glove by cerebo. This isn’t just another rehab device. It’s specially designed to help stroke survivors regain hand function through mirror therapy and assisted movement.

Bill Gasiamis 12:12
Whether you’re struggling with grip strength, finger mobility or hand coordination like angels is with his left hand, the glove works with you at your own pace in the comfort of your own home. You can learn more at their website. I’ll include the link in the show notes. Now back to Angel’s story, because what happens next reveals just how little Stroke Awareness exists, even among medical professionals. Yeah, fair enough. And then what happened? Did you go into surgery? How did they resolve the brain hemorrhage?

Anshul Bhardwaj 12:47
So, they told me, We don’t have this. The hospital we have came to is not a neuro special hospital. You need to go to a special hospital. So they referred my family. They told my family you had, your son had only 50% chances of survival. You just rush him to the big hospital as soon as possible.

Bill Gasiamis 13:09
So was your family’s responsibility to get you there.

Anshul Bhardwaj 13:13
So, yeah, they went. They took me from to them, from the ambulance to a neuro special Hospital in Delhi, only by car, near by ambulance.

Bill Gasiamis 13:22
Okay, so the ambulance took you, it was, yeah, yeah, under medical supervision, yeah, yeah. And then, how did they treat your brain hemorrhage? Did they? Did you need brain surgery? How did it work?

Anshul Bhardwaj 13:36
When I went to the neuroscience Hospital in Delhi, sir hospital, so they give two choices to my family. One is to they said me, they told my family, I do to go for open brain surgery. And second is safe surgery and geography. So they told my family, if you go for open brain surgery, the one thing that will happen will he can go to coma. His condition is very critical. He may go to coma and he can die also. The better option is to go for angiography, coiling, coiling. I had my coil I have my coiling beside this area.

Bill Gasiamis 14:14
So you had an angio gram, and then they used that method to put a coil in and coiling blood vessel from bleeding.

Anshul Bhardwaj 14:23
Yeah.

Bill Gasiamis 14:24
Wow. So how long did you spend in hospital?

Anshul Bhardwaj 14:28
Around 35 days.

Bill Gasiamis 14:31
Were you able to feel better as soon as the procedure was done? Or did you have some deficits that you had to deal with?

Anshul Bhardwaj 14:39
So, yeah, actually, I suffer from left-sided paresis. My left side got affected.

Bill Gasiamis 14:44
Left side paresis. What is that?

Anshul Bhardwaj 14:46
Paresis, P A R E S I S.

Bill Gasiamis 14:49
Yeah. What does that mean? What does it how do you feel? What does that do to you?

Anshul Bhardwaj 14:54
I was not able to walk. I was not able to move my left part of the body, left leg. I was not able. Were to walk, I was not able to drink the cup of coffee, tea like this. I’m still suffering from it. I’m not able to write from my left hand. I’m a left handy.

Bill Gasiamis 15:10
So you’ve been impacted on your left side. And yeah, is that better now?

Anshul Bhardwaj 15:15
Right now, walking is better, much better. I went to a physiotherapy, so work is much better right now. I can walk, but still writing is bit tough.

Bill Gasiamis 15:26
What about using a computer? Typing on a computer does that okay?

Anshul Bhardwaj 15:30
The speed is not okay. The speed is not good. I used to do it for my right hand, , right now, talking to you, I log in for my right hand only. Left hand, the gripping motor skills are not good.

Bill Gasiamis 15:44
So what’s the medical support like for somebody who’s having a stroke in India? Do you get all the support that you need when you’re in the hospital and then in rehabilitation?

Anshul Bhardwaj 15:54
So yeah, the hospital, I’m really thankful to them. They are the one who saved my life, so they were always checking on me. All the doctor always checking on me. So it was like, I, had physiotherapy in the hospital. Also the hospital was the reason of my stroke were hypertension.

Bill Gasiamis 16:12
So you had undiagnosed hypertension. Yeah, wow. And you’re, you’re 28 years old. You have hypertension? 2727 Yeah, yeah. And did you have any idea that you had hypertension?

Anshul Bhardwaj 16:29
Yes, I had. So, in 2000 20s, yes, in 2023 I had a nose bleeding in former this area while working in the office only so due to pressure and all. So, I went to the medical room of my office. So they checked my blood pressure very high. One more than 180 $6 more than one eight. That is very high.

Bill Gasiamis 16:55
Why do you think you had such high blood pressure? Was it due to the work, or is it just some kind of a genetic thing that you have?

Anshul Bhardwaj 17:03
I think, due to the work because the work pressure is much more in the media industry, news industry.

Bill Gasiamis 17:09
So when you discovered that you had high blood pressure, did they put you on blood pressure medication or or not?

Anshul Bhardwaj 17:17
So yes, I was on medication. I want to share one, one of the biggest thing with you, when the this thing happened with me when I was 2023 I’m talking about 2023 when I had my nose bleeding, so I was admitted in the ICU due to hypertension. So, I took a leave from the office, so I told my manager that I won’t be able to come today, and he told me, why don’t you work from the hospital only? Like a work from home.

Anshul Bhardwaj 17:50
You are very strong guy. He told me. He told me, tell your father to take the laptop to the hospital and you start working. We have very less people in the team can’t We can’t afford you taking a leave.

Bill Gasiamis 18:07
Wow, even if you’re very sick and you’re in hospital, he expected you to work. And did you do that? Did you work from hospital?

Anshul Bhardwaj 18:14
No. I just called it him, and it’s not possible. I reported to my all these things.

Bill Gasiamis 18:21
That’s a good move. Wow. Okay, so I understand now what you say about the pressure at work was very high, very high. Yeah, understand. So when you experience the stroke and you realized you’re in hospital and need to coil your brain, what is it like to be so young and to experience a life-threatening situation like that. How did it make you feel about what was happening?

Anshul Bhardwaj 18:47
It was very bad phase of my life, one of the worst phase you are young, just few days where you can drive motorcycle, you can drive car, but after few days your left side is not working. It’s a very big thing for a young guy, he’s seeing himself, he’s not able to feed himself, he’s not able to go to the washroom by himself. So it’s a very live, I think it affected me a lot. Just after a few days only, my manager removed me from all the WhatsApp groups.

Bill Gasiamis 19:21
So what about mental mental health? Like, did you start to notice that you were a little bit unwell, as far as your mental health was concerned? Were you worried? Were you concerned about what life is going to look like? What all yeah means for you?

Anshul Bhardwaj 19:37
Actually, I was very concerned. I was like, I don’t know how, like, I used to ask everyone in the hospital my doctors, when will life become normal for me? They told me, took some take some time. Everything will get your hand will start moving. You will start moving again. Everything will get normal. Nothing is permanent in this world. The doctor used to tell me, God is kind on you. It go alive, embrace their life.

Bill Gasiamis 20:02
Was that comforting to hear that? Did it help?

Anshul Bhardwaj 20:06
Yeah, this helped. This boosted me a lot.

Bill Gasiamis 20:08
Some positive feedback from your doctor, yeah. And did you accept what happened to you? Is it something that you understood that this is how things are now, and I have to tackle it. I have to move forward. Have to find a way through this.

Anshul Bhardwaj 20:26
Yeah, acceptance were not very good for me. I will never accept that I had a stroke. So I was not able to accept this reality that my left side is not working anymore. So I was like fear, fear of facing people. I was suffering from fear of facing people, so I was thinking that when things will get sad again, normal.

Bill Gasiamis 20:48
Yeah, fear of facing people, because they might judge you. Why?

Anshul Bhardwaj 20:53
The awareness of shock in India is very less so people judge you. You’re walking in a very different way, like this, like this, you’re not able to work properly, so they used to make fun of you like this. Fun of you why he’s working funny off your walk, walk style.

Bill Gasiamis 21:12
Wondering why that’s happened to you. They don’t understand about stroke.

Anshul Bhardwaj 21:16
Why he’s moving like this, holding his father’s hand to why this young guy who was so fit before, why he’s saying his father’s support to move to work, why he’s so dependent on his father now.

Bill Gasiamis 21:30
Do you think they’re asking out of curiosity more, or is it that they’re being silly about?

Anshul Bhardwaj 21:37
Actually curiosity because they’d want to know? Awareness is very low in my country, so they don’t know what stroke that’s why they are more more into like, why is this happening with him? When I went to the physiotherapy center, people used to ask me, What happened to you, what happened to you, son, what happened to you? My son, stroke used to happen with older people. So there were people of 80 years old. They used to ask me, What happened to you? Do you used to think a lot.

Anshul Bhardwaj 22:09
So I used to say, no, no, life. I used to explain my story to them the way I’m talking to you. So I used to say them, no, I had a strong due to hypertension. So they used to see, yeah, chill your life. Take your chill your life. Why you take so much pressure? I say, No, I don’t take pressure. I want to recover. I want to go back to my old life.

Bill Gasiamis 22:30
But you want to recover. You want to go back to your old life, but not your work. What about your work? Do you want to go back to your work?

Anshul Bhardwaj 22:38
So, just recently August, my doctor told me, You should go back to the work, start work from home. You can’t you can’t travel. My office is around 40 kilometers away from my home. So he told me, driving is very tough for you. You will get stressed out very easily. Go try for work from home. Then email my company, my manager about this. I want to work for home. They denied my request.

Bill Gasiamis 23:06
So you won’t be going back to the journalist job.

Anshul Bhardwaj 23:10
I want to go back to the job, but they are denying my request to work for Home. I don’t know when I will be fully fit to go back to the work. I see, I’m waiting for that moment.

Bill Gasiamis 23:22
I see so it’s very early days, though, your stroke wasn’t that long ago. It was still only a few months ago. And strokes takes some time to heal, yeah, yeah, and take some time to heal and recover.

Anshul Bhardwaj 23:35
Yeah. I just want to share one thing with you. I just had a Zoom meeting with one of the senior and most member of my organization. They don’t know my stroke. So he the way we are talking. He was talking to me. He say, Hey, you look very fine. Why you are saying you can’t come to the office? Just they are judging with whom I look say they You are looking very fine. You are looking very nice. You are looking very nice. You are so happy, looking very happy. Why don’t you come to the office?

Anshul Bhardwaj 24:03
Because awareness very low. They’re not able to understand what shock is. Mentally taking so much. We can’t travel 40 kilometers, a big thing. You can you can see 80 kilometers a day. It’s a very tough job for a shock survivor.

Bill Gasiamis 24:17
That’s huge, especially if your left side is not working properly.

Anshul Bhardwaj 24:22
So I told him that. I told my senior that I’m not normal like you. I’m a stroke survivor, I’m not a normal person. You can’t compare my journey to yours.

Bill Gasiamis 24:36
And just because you look a certain way doesn’t mean yeah, that everything is fine.

Anshul Bhardwaj 24:41
Yeah, this is the main aspect, just I’m talking right now. I’m looking good, so I’m looking normal. I didn’t mean I’m normal from inside too.

Bill Gasiamis 24:50
And if he saw you in person, he would notice your deficits. Your left side isn’t, yeah, operating correctly, yeah. But he saw you from zoom. And from zoom, everything looks fine.

Anshul Bhardwaj 25:02
Yeah, they look me. From zoom, they just assume that you are fine. So there’s You look fine. You look fine. Why don’t Why can’t you come to the office?

Bill Gasiamis 25:13
I understand. So when you go home after hospital and you’re at home. Are you being cared for at home by your family? How do you get support when you’re at home after hospital?

Anshul Bhardwaj 25:28
So when I came back to the home, mom to the from the hospital, I were getting a good care for my father. My father used to treat me, my meals, everything.

Bill Gasiamis 25:39
And is your father somebody who works, or is he not working at the moment.

Anshul Bhardwaj 25:43
Actually, he’s a retired person, government official.

Bill Gasiamis 25:46
Okay, so he has time to be able to support you.

Anshul Bhardwaj 25:50
Right now I’m leaving his horn. He’s paid all only.

Bill Gasiamis 25:52
So he still has some kind of payments.

Anshul Bhardwaj 25:56
He’s paying. He’s paying all my bills, for all my medicines bills and all because I’m not getting pay for my organization. So they are. He’s the only one who’s paying me all my bills.

Bill Gasiamis 26:08
And is it expensive to be a stroke survivor in India?

Anshul Bhardwaj 26:12
Yeah, very expensive. The cost of medicines is very high, maybe around $100 a month.

Bill Gasiamis 26:19
So you’re at home. You’re being looked after. Your dad is helping you out. So that’s really positive. That’s great support. Who else is helping you get through this? How else are you managing to find a way through to overcome all the challenges that this is creating?

Anshul Bhardwaj 26:35
I’m just waiting to get back my talk to my doctor. Recently, I had my appointment with my doctor. He told me, wait. Things will take time. Just wait to get back to your old fellow again. Wait two, three months more. It’s been only six months. You are expecting more from six months. Wait for one year. Next year you will complete one year. Then let’s see what we have.

Bill Gasiamis 26:57
I see and are you going back to the gym? Have you been able to go back to the gym and rehabilitate or do anything like that?

Anshul Bhardwaj 27:05
No, I can’t work out because left side is not working. So doctor has told me, No, don’t go to the gym again. We only go to the gym when I will give you, give you a clean sheet.

Bill Gasiamis 27:15
When they give you. What was that?

Anshul Bhardwaj 27:17
When he will give me the clean sheet.

Bill Gasiamis 27:21
Okay, so nobody has authorized anything like that for you yet.

Anshul Bhardwaj 27:25
No, he will do the MRI of my brain. Then I only will decide.

Bill Gasiamis 27:31
I see, make sure everything has settled down and the bleeding is not happening and the coil is in a good position, etc. Yeah, yeah. Has the hypertension settled down, or is it still high blood still there?

Anshul Bhardwaj 27:45
When I went recently, my sister Ollie, was 156 even after medication.

Bill Gasiamis 27:51
Even after, I understand. Was there a turning point when you said, I’m really going to fight for my recovery? Did you find yourself in that situation where you decided that you’re going to make sure that you get better.

Anshul Bhardwaj 28:06
When I understood that in India, nobody understand your pain, I made a decision. I will raise my voice through social media. I will do anything to raise shock awareness in India. I need just government support, support of the government. And government, I can do much big things.

Bill Gasiamis 28:25
Yeah, the government. Do they support Stroke Awareness programs?

Anshul Bhardwaj 28:31
I don’t know. I don’t know. In India, we have any Stroke Awareness Program also, I don’t think we have.

Bill Gasiamis 28:39
See in Australia, we have the Stroke Foundation helps to raise awareness about stroke. There isn’t a foundation like that in India.

Anshul Bhardwaj 28:48
No.

Bill Gasiamis 28:48
Okay. So do you know anyone else who had a stroke?

Anshul Bhardwaj 28:55
Have you met other people? Yeah, when you used to go to physiotherapy, I met many people there. I connected with them. We made a WhatsApp group of art stroke survivors.

Bill Gasiamis 29:06
So together, you guys are creating something new.

Anshul Bhardwaj 29:09
We used to talk each other pain. We used to talk about each other pain only we can understand then you Yeah, older people than me, some are in 50s, and some are in six.

Bill Gasiamis 29:22
So in your rehabilitation, you’re the youngest person there in that rehabilitation hospital. Yeah, yeah, I understand. So what did early recovery look like for you? How hard was it for you? Are you back on very high are you able to be independent and go to the bathroom on your own?

Anshul Bhardwaj 29:40
So, in the early stage of my life, for one of the threatening moment for me, I lost my manhood. At that time.

Bill Gasiamis 29:47
You felt like you were less of a man.

Anshul Bhardwaj 29:50
Yeah, because I lost my erections, I’m saying this for the first time, yeah, I was in India. It’s like, it’s very tough to share these things with a. Other people. People judge you on this basis. So I was not able to share with my family. I didn’t share with anyone. I’m sharing this with you for the first time. So I was not having any movement. In Boyle, we have a election in the morning. I lost all my election for around one month.

Bill Gasiamis 30:19
Are you think, and is that something that you were able to receive some support with from your doctors or anybody like that?

Anshul Bhardwaj 30:26
No, I was not able to share it with my anyone, because people judge you. People say you’re less of a man. You’re not man. They judge you on this basis. You can’t share this with anyone.

Bill Gasiamis 30:40
It’s very difficult, I know, as a man, to be able to admit that it’s difficult, and also to have a conversation with other people. Yeah, the reality is, is that it is something sexuality, and the way I feel after stroke in in that way does change. It’s, you know, for some women, it’s completely different. For some men, it’s completely different. Yeah, and you felt that you were going to be judged by other people that had that conversation, so you haven’t shared that with them, but you, you thought it’s a good idea to share it on the podcast that goes all around the world.

Anshul Bhardwaj 31:16
Yeah, I want people to know about this. I don’t, I want to spread awareness, to know people accept this. If something can happen, to accept this thing, this is not a shame thing. People will get, I think, through this, people will get to know, yeah, this is happening with them, okay, something like this. Who those who don’t know about shock, they will get to they will get to know about this thing. Shock is a tough thing. It’s not an easy thing.

Bill Gasiamis 31:42
Yeah, it’s an it’s part of the injury. What you’re experiencing, you can’t get an erection. That’s part of your injury that happened inside your brain. It’s got nothing to do with you or anything else. It’s it’s not something that you created. It’s just something that’s happened as a result of the brain bleeding.

Anshul Bhardwaj 31:59
So, I used to search on net also, so I just didn’t I got many people stories and read it, people talking about they had some erection issue also.

Bill Gasiamis 32:11
After stroke, or just?

Anshul Bhardwaj 32:15
After stroke. So then I was able to connect. Is rare, because at that time, I was very shattered, because I’m not married, I’m single. Right now, I was thinking, when, what will happen the future? Nobody will marry, nobody will accept me.

Bill Gasiamis 32:29
Okay, so now you’re thinking that as well.

Anshul Bhardwaj 32:33
I was in a bit of mental pressure after this, knowing this, because when I was in hospital, I used to feel very bad. I used to feel what has happened to me, I’m not a man. Now, what will happen to me in the future? Who will marry me? Nobody will going to marry me. Nobody will accept this type of man.

Bill Gasiamis 32:50
Yeah. Do you feel better about that now, now that you’ve had the opportunity to discover that other people have been through this, do you know that there’s a path forward that you can also rehabilitate that part of your life.

Anshul Bhardwaj 33:05
Yes, I can say that this improve with time. The problem which I was suffering from, improves and improved in one month. Started improving I was thinking I was looking at improvement in just one month only. And the hospital, there was no movement, no erection control. I used to feel very bad. I lost my urinal and bowel controls.

Bill Gasiamis 33:27
As well, so you also weren’t able to hold on to your bells.

Anshul Bhardwaj 33:31
Yeah, I was used to doing the hospital bed only, okay, so I used to be on the hospital experience and to go through that. Yeah, even the nurses used to make fun of me at that time. They were not able. I don’t know why they were not able to understand it. I used to tell me, I’m not able to hold my pee. I used to pee on the hospital bed only. They used to fund me. Why you pee so much? You can’t control your pee?

Anshul Bhardwaj 33:58
They were not able to get me. I don’t know there was a communication issue. They didn’t know about this, so you should tell her that I’m not able to control. I don’t know why I’m doing this. I want to control. I’m not able to control. I can’t do anything.

Bill Gasiamis 34:11
The nurses are not trained to understand what happens with people who have a stroke.

Anshul Bhardwaj 34:16
I don’t know about this, but this is the reality that happened with.

Bill Gasiamis 34:20
Okay, so they’re making life even harder. It’s hard already. Yeah, hospital, you’re recovering from a stroke, you have all these challenges, and then these people do not understand that you are not being a terrible patient. You are just this is one of the symptoms of what happened to you.

Anshul Bhardwaj 34:37
Yeah, actually, when the nursery used to change my diaper around three to four times a day because they used to get frustrated about this. They used to tell me, why are you? Why don’t you tell us to get yourself to the washroom, get someone to take you to the washroom, to pee.

Anshul Bhardwaj 34:58
So why don’t you pee? In the bottle instead of doing hair in the bed you’re doing in. This is taking so much they used to waste our time on the bed, so we used to change your diet, but feel weird to us. So I used to also feel shy because I’m male, they are female, they are we are I’m not able to connect with them. So I used to feel very shy.

Bill Gasiamis 35:21
Yeah, that’s a very difficult situation. And did that continue while you were in hospital the whole time? Did that improve with time?

Anshul Bhardwaj 35:29
But in the hospital, there were no improvement. I got improvement only at home after one month.

Bill Gasiamis 35:36
After one month. So is that because you can hold on to your bowels now and have more time to get to the hospital to the toilet.

Anshul Bhardwaj 35:45
So, I just want to tell you one thing. When I came back to the home, I started my physiotherapy. I think after my body started becoming little bit my this part of my body also started recovering, getting strength, my testosterone level started improving at hospital. It was very low due to that reason, I was not getting any erections at that time.

Bill Gasiamis 36:09
Yeah, and the bathroom situation, how did that change when you were at home? Were you able to hold on to your bells before going to the bathroom at home? Or did you have to wear a diaper at home as well.

Anshul Bhardwaj 36:22
I used to wear diaper at home also.

Bill Gasiamis 36:25
And that has improved. Now it’s not like that.

Anshul Bhardwaj 36:28
Now, no, I don’t wear diapers. Now I can go myself.

Bill Gasiamis 36:32
So you don’t need any help at the bathroom?

Anshul Bhardwaj 36:35
No, no.

Bill Gasiamis 36:35
Yeah, that’s a positive sign that’s improved. Your testosterone is increasing. Yeah, you’re able to feel a little bit like yourself again. So it’s interesting that there is such a lacking awareness of what stroke can do to a person, especially even in the medical field and the nurses were giving you a hard time. I understand it would be very difficult to clean a diaper of somebody who is an adult when they’re in hospital, but it’s unfortunately, very necessary, and something that needs to happen so you can you can recover.

Bill Gasiamis 37:08
These things need to happen. They need to that’s what the job of a nurse is. Do you feel like the nurses were untrained, or were they just is that a cultural issue? What kind of issue is it? What’s happening there? Why are they so uncomfortable dealing with their patient?

Anshul Bhardwaj 37:24
I can’t say that they were untrained. That was the bad this, that hospital was a I can’t say they were untrained. I don’t know why they knew didn’t understand my thing, my condition. I don’t know why they were very well trained. They know how to throw things. They were frustrated because of me, because I was being in the bed every time. I don’t know why this one had it happened with me.

Anshul Bhardwaj 37:48
It could be this thing that God wants me to come to your fort card and share this thing that that’s why that happened with me. I think so. Yeah, everything is enough.

Bill Gasiamis 38:02
Why not? That’s a good reason. Why, especially if it’s going to help other people by you sharing your story and and making some awareness. Yeah. So what was it that, what was your biggest challenge and test? Do you think so far after the stroke.

Anshul Bhardwaj 38:17
It was accepting myself. I still remember when I went to the physiotherapy I used to wear outside. I used to go outside. I belong to a Punjabi family in India, so we used to keep a Talib at home and patka type of thing. When I used to go outside of Maha I used to cover my mask. I don’t want to face people wear that patka type of thing on my head. Where my Tata you need to seek people, you know, seek, seek people, Sikh people, yes, sikha, yes, sikha, Sikh religion.

Anshul Bhardwaj 38:53
People used to wear something on the turban at the top of their head. I used to do that type of thing so nobody recognizes me and on the because people at my neighborhood know me. They were under they will recognize me. How well this guy is working like this. They will start laughing on me. I was fair speaking, looking at people. I used to get scared a lot, and I used to wear a mask on my face, or nobody recognizes me who is working on the road.

Bill Gasiamis 39:23
And how long did it take you to take that mask off and to go into public? Around one month. What did you decide to do that for? What happened? How did you decide I’m not going to cover my myself and hide.

Anshul Bhardwaj 39:39
I started taking a mental therapy psychologist. I took a therapy from a psychiatrist. I told her everything about me. She told me, these are your fear. This is not a reality. These are your fears. So start working on your fears. Stop wearing this mask. Don’t come again, wearing this mug in front of me.

Bill Gasiamis 39:59
So this particular therapist was very important to help change the way you were thinking about the situation you were in. And did you still see the therapist, the psychotherapist? Or is it a psychologist, or is it a psychiatrist? What? Who did you go and see?

Anshul Bhardwaj 40:15
She’s a mental therapist, psychologist, I guess.

Bill Gasiamis 40:20
Yeah. And do you still see her now?

Anshul Bhardwaj 40:23
Yeah, she is in touch with me. We have each other number. We used to greet her Good morning. I used to get her good morning every day, like this. I’m in touch with her. I used to ask her about her family. What’s going on in your family?

Bill Gasiamis 40:35
Do you see her professionally? Is what I meant, sorry, sir. Do you see her as her patient, or has her client? Do you go back for more therapy sessions?

Anshul Bhardwaj 40:44
No, I just took therapy with her from one for sale, only one month.

Bill Gasiamis 40:49
But there was enough to make you change the way that you were thinking about things.

Anshul Bhardwaj 40:52
Yeah, she helped me a lot to gain my mental stability back.

Bill Gasiamis 40:57
Yeah. Did you find that you found yourself at a really dark place. Was there a rock bottom moment when you felt like. why is this happening to me?

Anshul Bhardwaj 41:07
Yes, sir, I was very fit, very good guy. I was a gym trainer before I became a journalist. I used to be very fit. So, we have an Indian actor in India, a very famous Bollywood actor. His name is Salman Khan. He’s a fitness icon of India. Salman Khan. My friend used to call me Salman Khan before, before my stroke. So, when this happened with me, people used to tell me why. He used to think himself. Someone can that. That’s why he this happened with him. They used to curse me like this.

Bill Gasiamis 41:50
Wow. So people used to call you the name of that person. You didn’t change choose that, but then, because you were happy with people calling you, that you enjoyed being called that name. Other people you were that you had an ego. What did they think you had a why? Why was it a problem that you somebody was calling you the other person’s name?

Anshul Bhardwaj 42:17
No, this was not a problem. I used to feel very happy, because he is a very big actor in India. Very big Bollywood actor.

Bill Gasiamis 42:25
Very famous people thought, but the other people thought that you had a stroke because you thought you were more special, more important. Why did they think?

Anshul Bhardwaj 42:35
They used to tell him on the people on the road to gossip about me, used to him think himself as Salman Khan. Look at him. Now, he can’t walk now. He used to him think himself as a fitness icon. Look at him. Now, what has God given to him?

Bill Gasiamis 42:52
They thought it was negative, that you thought yourself more more important or something.

Anshul Bhardwaj 42:59
It was more of a negative dog.

Bill Gasiamis 43:03
You just had somebody called you that name. You thought it was funny, you thought it was good, and that was it. You weren’t you didn’t have a big ego.

Anshul Bhardwaj 43:12
Yeah, before my stroke, I used to feel very happy when people used to compare with me. Salman Khan, I used to feel very happy that people are calling me and like comparing with a Bollywood icon, it’s a very big thing for me.

Bill Gasiamis 43:27
Yeah, and now they don’t compare you to him anymore.

Anshul Bhardwaj 43:30
Nah, they don’t. I’m very thin now. I’m not a big guy. I’m I lost my weight also.

Bill Gasiamis 43:37
Yeah, and your friends, the ones that were people who you used to spend time with before the stroke. Do you still see all your friends?

Anshul Bhardwaj 43:46
Before my show, I don’t have much friends. I have very limited friends. I used to go out with my family only. I’m a family person. Type of person I see. I used to spend time with my sister or my husband, I see Yeah, like this. So very less friends.

Bill Gasiamis 44:07
Yeah, and the people that you used to know at the gym at work, your colleagues? Do you? Do you keep in touch with any of them?

Anshul Bhardwaj 44:13
Yeah, my colleague used to call me. Then, when are you going to go back to the work? Come back to the work. We are waiting for you. Why don’t you come back? So I used to tell them my story. I had a stroke. They don’t know about stroke symptoms, so they used to tell me, it’s just a stroke, just a stroke. Why can’t you come back? Why are you taking it is taking you too long to come back to the office.

Anshul Bhardwaj 44:36
It’s just a stroke, just a shock. Stroke is just like cough and cold. They used to compare like this, wow. And I’m not able to understand and I’m not able to make them understand that stroke is a big life setting disease.

Bill Gasiamis 44:50
Yeah, it’s difficult when somebody hasn’t gone through it and they haven’t met anyone that’s had a stroke. It’s really hard for them to understand they when there’s no. Awareness, then it becomes your job to make them aware of what a stroke is, how serious it is, and how it’s affecting you. And just because you look fine on the outside doesn’t mean that you’re fine on the inside. Yes, that’s a big thing. So yeah. So looking back now, how have you changed, not just physically, but also emotionally and mentally. How have you changed? How are you different than before?

Anshul Bhardwaj 45:25
So, now I have become more of a positive at that time, I used to work with negative people. I was more negative. One more negative thoughts. Now I’m I’m in a hard home. I’m on a recovery, so I’m with spending time with family more. So I’m more on a positive side. So I think that, yes, I’m no mind. I’m now more positive than before. I used to challenge the movements that I got a one more birth, and my opinion, only few people in the world has a chance second chance in life.

Anshul Bhardwaj 45:58
Very few lucky people get second chance so I used to cherish this moment, this moment. I used to thank God every day I used to enjoy the nature. There was a time I was not able to enjoy the nature. I can see I can just hear the birds chirping. I can’t go and see outside. I can hear the children’s up. I can hear the children’s playing outside. I can see, I can hear the rain falling on the ground. I can’t see. I can enjoy the nature.

Anshul Bhardwaj 46:30
In the beginning of my stroke time, I am just laying on this bed only. I’m just just listening to what’s happening outside. I can’t just see, I can’t just feel the nature. I can see the children’s are playing outside, but the birds are charming, chirping outside.

Bill Gasiamis 46:47
Understand, what have you discovered about yourself? What kind of strengths do you see in yourself that you didn’t know that you had before?

Anshul Bhardwaj 46:56
The strain I have is inner, inner power to face all this thing I have survived six months facing all the negative talks, talks from the other people.

Bill Gasiamis 47:07
It seems like you see your stroke as something that has shaped you in a meaningful way. Yeah, yeah, that’s excellent. So if you could share one lesson from your journey with somebody that’s newly diagnosed. Perhaps they’re newly diagnosed in India. What would it be? What would you say to somebody that has been through what you’ve been through?

Anshul Bhardwaj 47:30
I want to tell him that don’t lose hope. Everything will get back. If you’re not able to walk right now, you will walk. I’m working. I’m working with my I’m also able to talk properly. Everything will get better with time. Don’t fear anything. Nothing is permanent in this world, no weather is permanent. If it’s raining today, sun will rise tomorrow. If today’s monsoon will winters will come.

Anshul Bhardwaj 47:57
Nothing is permanent. I found 27 years old today, I will not remain 27 years old. For my lifetime, I will become 18 or also, nothing is permanent. Yeah, just judge the God, God’s plan. Everything happens for a reason.

Bill Gasiamis 48:10
So what does post stroke growth mean to you? Personally, there seems to have been some growth in your life, even though you’re going through these difficult times. What does that mean to you?

Anshul Bhardwaj 48:23
So, I just want to tell you one thing. Before my show, I was not much connected to my father there. I had a very different I am now much more closer to him, because I have spent six months at home so I can, I have much good relation with him. Now, I used to feel I’m more connected with him now as what I was before.

Bill Gasiamis 48:45
Yeah, have you also discovered a new purpose and passion in life? Is this something that you’re working on? Is there something more purposeful about your life these days?

Anshul Bhardwaj 48:57
Yes, I want to aware. I want to aware, make people of my country aware about I want to spread shock awareness in my country to every household. I have a plan, which I wanted to share with my office. I didn’t got the opportunity to work from home, so I’m not connected with them right now. So, what I have a plan is, so I have a plan. I work for the news channel. It get broadcasted to all of the TV channels, so I had a plan to have a stroke series and my news channel, Stroke Awareness series.

Bill Gasiamis 49:31
Yeah, that’d be amazing. Yeah. I hope it works out for you. And sure, I really appreciate you reaching out and joining me on the podcast, I appreciate you sharing your story and being so open and vulnerable, and I wish you well in your recovery, and I look forward to hearing how you continue to spread the message about stroke Stroke Awareness and how you are achieving those new goals in your life. Yes. Thank you for joining me. I really appreciate it.

Anshul Bhardwaj 50:02
Thank you, sir. It’s a big pleasure of mine.

Bill Gasiamis 50:05
What a powerful and courageous conversation, the honesty, vulnerability that angel brought to the discussion is exactly what the stroke community needs real talk about the challenges that most people are too afraid to mention if you’re struggling with erectile dysfunction, bowel control issues, or any other challenge that’s left you feeling ashamed or isolated. Please know that these are neurological symptoms, not personal failures, and as we heard today, they can improve with time and proper support.

Bill Gasiamis 50:35
If this episode resonated with you and you want to explore more about the unexpected way that growth can come from stroke recovery. Check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. You can find it at recoveryafterstroke.com/book. Please subscribe to the podcast so you never miss these conversations. Leave a comment on YouTube, sharing your own experience, and if this episode helped you. Share it with someone who needs to hear it. And a final thank you to Banksia tech for supporting this episode.

Bill Gasiamis 51:07
If you’re looking for ways to improve hand function after stroke, check out the Hanson rehab glove by cerebo at Banksia tech.com.au, remember, you’re not alone in this recovery journey. There are people who understand, people who care, and people who are walking the path right alongside you. I’ll see you in the next episode. Take care.

Intro 51:30
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 51:59
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 52:24
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 52:51
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.

The post Anshul Bhadwaj: Breaking the Silence on Sexual Health and Dignity After Stroke appeared first on Recovery After Stroke.

When you’ve spent your life working seven days a week, the idea of slowing down feels impossible until a stroke stops you in your tracks.
That’s what happened to Bud Beucher, a resort president from Florida whose drive, optimism, and leadership spirit suddenly met their toughest test yet: an ischemic stroke that left him unable to move or communicate clearly.

After 47 days in hospital and months of frustration, Bud found a path that reignited both his health and his personality hyperbaric oxygen therapy (HBOT) through Aviv Clinics.

Before his stroke, Bud was the president of the Michigan Resort and Club in Howey-in-the-Hills, Florida.
He managed more than 300 employees, ran a full-service property with golf courses, tennis courts, and restaurants, and thrived on being busy.

“I only worked on days that ended in ‘Y,’” Bud laughed. His passion for hospitality wasn’t just a job it was his identity.

Then at 64, everything changed.

Bud went in for a routine colonoscopy after pausing his blood thinner for atrial fibrillation. A few hours later, his wife found him unresponsive on the couch.
He’d had a major ischemic stroke, followed by another two days later.

He woke in hospital unable to use his right side and barely able to speak. “I spent 47 days in hospital and came home 80 pounds lighter,” he recalled.

What kept him going? The same thing that drove his career his mindset.
“My glass has always been half full,” Bud said. “If you’ve got a victim mentality, recovery won’t be nearly as positive or complete.”

Months into rehab, Bud’s son told him about a program in Florida combining advanced diagnostics, personalised rehabilitation, and hyperbaric oxygen therapy.
It was called Aviv Clinics, part of a global network using HBOT to enhance brain and body recovery.

Bud and his wife Jane toured the facility and were immediately impressed: world-class equipment, full medical oversight, and measurable before-and-after testing.
Unlike traditional rehab, every protocol at Aviv is guided by data MRI and CT scans, cognitive assessments, blood work, and fitness testing before treatment even begins.

Bud enrolled in a 12-week program involving five sessions per week. Each “dive” placed him inside a large multi-person chamber one of the biggest outside the U.S. Navy breathing pure oxygen under pressure to stimulate the body’s natural healing mechanisms.

The idea behind HBOT is simple but powerful: increased oxygen levels encourage the brain to build new blood vessels and restore function in areas surrounding the dead tissue caused by stroke.

“They told me the damaged tissue in the center of my brain was gone forever but the surrounding areas still had hope,” Bud said.

During those sessions, Bud’s wife joined him side-by-side, supporting him through every stage. “If she hadn’t come, I wouldn’t have been as successful,” he said. “It’s exhausting, and having your partner there makes all the difference.”

Aviv Clinics didn’t just focus on oxygen therapy. Their program incorporated nutrition coaching, physical therapy, and psychological support to help clients rebuild from every angle.

Bud learned how diet could affect inflammation and recovery, began strength training with a specialist who understood stroke deficits, and embraced the full-time job of healing.

“It’s five days a week, twelve weeks straight,” he said. “You can’t miss a session. But when your health is on the line, you’d spend your last penny to get it back.”

Halfway through the program, Bud noticed subtle but powerful changes. His energy returned. His confidence grew. Conversations that once felt foggy began flowing again.

By the end of 12 weeks, his doctors showed comparative brain images revealing increased activity in previously low-functioning areas.

More importantly, Bud felt like himself again.
“My personality came back to life,” he said. “Before, I’d sit quietly, thinking responses in my head but never saying them. Aviv gave me my voice back and it gave my wife her husband back.”

Today, at 68, Bud is stronger and busier than ever but this time, it’s on his own terms.
He works out with a personal trainer, travels with Jane, and spends time with their 11 grandchildren.

“I’m happy, but I’m not satisfied,” he said. “You only have two choices every day improve or decline. I choose to improve.”

Bud’s story offers more than just medical inspiration it’s a reminder that mindset, persistence, and the right support network are essential for recovery.

“Ants don’t give up and neither do I,” Bud said. “There’s no hill too steep for a mountain climber.”

Hyperbaric oxygen therapy isn’t a magic fix, but for some survivors like Bud, it’s been a key that unlocked new potential years after their stroke.

Watch: [YouTube – Bill Gasiamis Channel]
Listen: Spotify and Apple Podcasts @ Recovery After Stroke

Learn more about Aviv Clinics at aviv-clinics.com and discover Bud’s full journey in this inspiring conversation.

For more stories of hope and recovery, explore:

• The Unexpected Way That a Stroke Became the Best Thing That Happened – Book
• Support Recovery After Stroke on Patreon

Before we dive in, a big thank you to Aviv Clinics for sponsoring this episode and for the incredible work they’re doing to support stroke survivors through advanced hyperbaric oxygen therapy.

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

Resort president Bud Beucher lost his voice after a stroke, not physically, but mentally. Hyperbaric oxygen therapy helped him speak his mind again.

Hyperbaric Oxygen Therapy – Dr. Amir Hadanny
Dr. Shai Efrati on Hyperbaric Oxygen Therapy: A Game-Changer for Stroke Recovery
Hyperbaric Oxygen Therapy Improves Stroke Deficits

Highlights:

00:00 Introduction and Acknowledgments
01:06 Bud Beucher’s Background
04:37 Life Before the Stroke
09:32 The Stroke and Initial Recovery
16:07 Bud Beucher: Remembering Through the Fog of Stroke Recovery
24:25 Redefining Purpose After a Lifetime of Work
32:19 Hyperbaric Oxygen Therapy and Aviv Clinics
45:19 Healing the Brain, One Breath at a Time
57:00 Progress and Support During Recovery
1:12:22 Post-Recovery Life and Travel
1:21:18 Final Thoughts and Advice

Transcript:

Bill Gasiamis 0:00
Before we dive in today’s episode, I want to take a moment to thank the incredible people who make this podcast possible. First, a massive thank you to my Patreon supporters. Your contributions help me cover the costs of hosting, editing and producing this show for 10 years. I did this entirely on my own, but your support allows me to continue bringing these stories of hope and recovery to stroke survivors who need them most. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke.

Bill Gasiamis 0:32
I also want to shout out to those of you who leave comments on YouTube, your insights and encouragement mean the world to me and to other stroke survivors who read them, to everyone who leaves reviews on Spotify and Apple podcasts, thank you for helping others find this show. To those of you who have purchased my book, thank you for supporting this mission and to everyone who watches without skipping the ads. You’re helping this podcast reach more people who need hope now today’s episode is special because it’s sponsored by Aviv clinics.

Bill Gasiamis 1:06
I first learnt about Aviv when I interviewed two of their doctors for the podcast. The links of those interviews will be in the show notes. I wanted to understand how hyperbaric oxygen therapy works and bring that information to you the stroke survivors. Listening, those interviews were so valuable that we’ve come full circle. Aviv is supporting this episode, which allows me to keep creating this content for our community.

Bill Gasiamis 1:33
So today, I’m speaking with Bud Beucher, who experienced two ischemic strokes at the age of 64 Bud was the president of a major resort, managing 325 employees, living life at full throttle. After his strokes, he spent 47 days in hospital and lost over 100 pounds. But the most devastating loss wasn’t physical. It was his personality. Bud could speak, but the conversations happening in his head wouldn’t come out, that is until he discovered Aviv clinics and their 12 week hyperbaric oxygen therapy protocol.

Bill Gasiamis 2:08
What happened next is a testament to the power of innovative treatment, unwavering mindset and the support of a devoted partner. Let’s dive in. Bud Beucher, welcome to the podcast.

Bud Beucher 2:19
Thank you, Bill. I appreciate it being here with you today.

Bill Gasiamis 2:23
Likewise. Thank you so much for joining me. I wanted to get a bit of a sense of what life was like for you before stroke.

Bud Beucher 2:34
Well, I was the president of Michigan resort and club in Howie and the hills, Florida. I had 325 employees that worked for me, and life was a blur. I had four children, and I was 64 years old when I had the stroke, and as my dad would say, I was busier than a one handed paper hanger, and I only worked in days that ended in why.

Bill Gasiamis 3:03
And Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday.

Bud Beucher 3:11
Only those that ended in why. My wife is very supportive, and we’ve had a great life together. And you know it my job wasn’t work. It was my passion. And so we we have a hotel, or we had a hotel, we sold it in March or December of 22 and so it was already in the works when I had the stroke, and so that was that was bittersweet. You know, I spent my whole life working here. I was seven years old when we came here to Florida, and my brother Bob and my dad acquired what was then just a golf course.

Bud Beucher 4:01
And we ended up 176 rooms, two championship golf courses, eight tennis courts, 52 slip marina. We had 1000s and 1000s, like 30,000 square feet of public space. We had a Spa Fitness Center. We have ski and trap range. So it was, it was really a full service resort, and like I said, it was my passion.

Bill Gasiamis 4:29
Were you a workaholic?

Bud Beucher 4:37
It depends upon who you ask, not from my perspective, I love to get up early and go to work. I just enjoyed it so much. And on Saturdays and Sundays, it gave me the quiet time to sit by my desk and kind of think of things, think of things that we could have done. Better, so forensic. So we always looked at holidays and things like that, and we drove a lot of business in that day.

Bud Beucher 5:11
We had like 120 weddings a year. We did like 1600 covers on Thanksgiving, Christmas, Easter, Sunday, Mother’s Day. And I always, always worked those holidays, and so I was up close with the staff and up close with the customers.

Bill Gasiamis 5:34
What were your family’s responses to the fact that you’re always somewhere else for the holidays. You were never available, so to speak.

Bud Beucher 5:47
For Well, my oldest daughter, so my second child is Morgan, and she was 11 or 12 years old, but she before she realized that Thanksgiving did not come on Saturday. So we always, we always had a big Thanksgiving meal. We invited all my brothers and sisters, the kids, cousins. We threw footballs in the backyard. We watched football games. We did all the traditional Thanksgiving meal prep and food. But it just wasn’t on Thursday. It was on Saturday, and that was fine with them. That was fine with me.

Bud Beucher 6:27
And for Christmas, the same way, on Christmas day, I’d set the alarm at four o’clock in the morning. We’d wake the kids up when they were little, and we would tear into presents, and about 730 or eight o’clock, I’d get up and say, Well, I’m going to go to work. Is there anybody that like to give up playing with their toys and come to work with dad? And of course, you know what? The answer was, No. But as as the kids got older, they had responsibilities to the resort.

Bud Beucher 7:02
Yeah, all of all of them, all of my nieces and nephews, at some point in their lives, all worked at the resort. So I’m not painting my children out to be special, although my children are special, yeah.

Bill Gasiamis 7:14
How would you describe yourself? There’s the word driven. Is that appropriate? Is there another word that will kind of describe you in a nutshell? I know it’s a big ask.

Bud Beucher 7:30
Driven would be one word positive would be another word. Optimistic would be another word. Hard working would be another word. My glass is always half full. I’ve got a very positive attitude, even before the stroke, and since the stroke, even more.

Bill Gasiamis 7:51
Great attributes to bring to stroke recovery for sure.

Bud Beucher 7:55
Absolutely, you cannot recover, in my, my opinion, from a stroke, if you are a half empty guy or gal.

Bill Gasiamis 8:05
I mean, yeah, you can benefit from the medical system. You could get the life saving treatment, you could get rehabilitation, you could get all sorts of things. But if the attitude stinks, well, it’s not going to be the best outcome.

Bud Beucher 8:20
What is, what does my sister say? The fish stinks from the head. So if you have a thinking thinking, and you have a victim mentality, your recovery won’t be nearly as positive and robust and complete as if you are working hard to achieve the next goal. And so early on in my recovery, you know, I’m a bit of a hard head. And so my wife and I were walking.

Bud Beucher 9:05
And we were walking on one of the streets here at the resort, and she said, Bud, you’re in the middle of the road. I said, No, I’m not budge. You’re in the middle road. No, I’m not, Bud. You’re in the middle of the road. No, I’m not. And she finally, out of frustration, said, You’re a hard head. And I turned to her, and I looked at her, and I said, You’re damn right, and if I weren’t a hard hit, I wouldn’t be recovering as well as I am today.

Bud Beucher 9:32
So I spent 47 days in the hospital. I had an ischemic stroke, and my wife was amazing. My son in law was unbelievable. He’s a doctor, so he responded to my wife’s call and came to the condo and I was non responsive.

Bill Gasiamis 9:52
And what was it leading up, up to the stroke? What was it like? Were was there any sense that something was off, wrong? Thing. Did you notice anything before that? That, in hindsight, you can say, I think that was the stroke.

Bud Beucher 10:10
There were no external pressures beyond the normal routine that I had. Now. I will tell you that my wife believes that as a function of my getting the covid shot and the booster that that that aided in my stroke and I there was I went in that day for colonoscopy, because my mother died from colon cancer, and so I’m very aware of that. And the doctor I’m also have AFib So, and I’m on Eliquis.

Bill Gasiamis 11:00
So, the doctor atrial fibrillation, so an arrhythmia of the heart.

Bud Beucher 11:06
Yes, sir. And so there was no reason for me to be bridged. So I went to the heart doctor, and I said, I’m going in, you know, on this day for colonoscopy, what do you think about me coming off my office, and he’s he green lighted it. He said, Fine. And so my last dose was like on a Monday, and I went in for the colonoscopy on March 31 so I’ll make this shit up. That would have been Wednesday, and I had the colonoscopy at one o’clock, and I came home with my wife. She was the Uber driver, if you will.

Bud Beucher 11:48
And, you know, like all great colonoscopies, you’re full of air and you don’t feel real good, and you’re tired, and I just wanted to lay down on the couch and watch a little TV. And my wife needed to stretch her legs, so she said, I’ll go for a walk. I said, Great, I’ll be right here. And you know, her boss called me because he had a reservation at the resort and was going to need to cancel it because something came up. And I said, not a problem, Casey, I’ll go ahead and cancel for you. So I called Henry and canceled this reservation.

Bud Beucher 12:25
She came in about five minutes later. She was talking to our oldest son, Nicholas, and when she hung up, I was on the couch, and my glasses were off and the TV was on rather loudly, and she said, Bud, what are you doing? And I didn’t respond. And then she went around the little pass through, and she looked at me. She said, This isn’t funny.

Bill Gasiamis 12:51
We’ll be back with more of Bud’s remarkable story in just a moment. But first, I want to thank Aviv clinics for sponsoring this episode. Bud’s journey with hyperbaric oxygen therapy opened my eyes to what’s possible when you combine cutting edge treatment with comprehensive rehabilitation. VIBs, 12 week protocol isn’t just about sitting in a chamber, it’s physical therapy, cognitive training, nutritional counseling and personalized care, all working together. If you’ve been wondering whether hyperbaric oxygen therapy might be right for you.

Bill Gasiamis 13:23
Aviv clinics offers a diagnostic testing upfront to determine if you’re a candidate. That transparency and thoroughness is what impressed me when I first interviewed their doctors, and it’s why I’m proud to have them supporting this episode. You can learn more about Aviv clinics and their approach to stroke recovery @ aviv-clinics.com. Link will be in the show notes. Now let’s get back to bud and hear how he went from Silent dinners with his wife to traveling the world and reclaiming his life.

Bud Beucher 13:55
And I didn’t respond, but my eyes were moving, and that’s when she called 911, and our son in law, Alex, is a surgeon general surgeon, and so he has privileges at the hospital group here in Orlando or MC, and he came up before he got there, before the paramedics came and the ambulance. And so you know, between him and his wife, him and my wife, they made the decision that ormc had a level one trauma center, and that’s where we should go. And so the ambulance came. And I don’t remember any of this.

Bill Gasiamis 14:39
This all stuff that you’ve been told by the wife and the people who are around.

Bud Beucher 14:44
Yeah, and so they told my wife, because they would have airlifted me, but there were storms in the area, so it wasn’t safe to fly the helicopter. So the ambulance driver said, don’t try to keep up with us. It won’t be safe. So we’re maybe 35 – 40 minutes from downtown Orlando, and of course, Alex knew that there was a three hour limit, or real close to three or four hour limit.

Bill Gasiamis 15:13
So he’s seen, to be seen for a strokes, potentially give you the blood clot busting treatment.

Bud Beucher 15:21
Yeah. And when I got down there to ormc, they were very good. They communicated with my wife, and, you know, doctors speak in their own language, so thank God we had Alex, because he was able to interpret what they were saying, Yeah, and so I got the I got the TPA and the thrombectomy. So it was a blood clot and got lodged in the center of my brain. And you could see it through the Aviv pictures that they took as I was being onboarded in February of 23.

Bill Gasiamis 16:07
Yeah. Now let’s go back a little bit. So when was the first moment that you became aware that there was something wrong with you? Not Do you know you’ve missed the opportunity to understand what was happening to you. The stroke kind of put your brain offline. Most of the stuff you’ve told me was through stories that other people have told you, but in in the process, did you become aware that you’re unwell at some stage?

Bud Beucher 16:35
No, I did not. I was, they were concerned about me living. So it was I spent 47 days in the hospital, and maybe a half a dozen of them was in ICU, and so I can remember being wheeled down the hospital. So I had a second stroke, actually, on April the second, and I can remember being wheeled down the hallway in the middle of the night, and I kept thinking to myself, remember this, remember this.

Bud Beucher 17:12
And I can remember seeing the fluorescent lights in the ceiling going by me, and I was going down somewhere in the hospital for tests. And, yeah, that that, and, you know, little bit here and a little bit there. But in terms of continuity, it really wasn’t until probably two weeks into my stay.

Bill Gasiamis 17:39
How long after the first stroke was the second one?

Bud Beucher 17:43
I had the first stroke on March 31 and the second stroke on April the second.

Bill Gasiamis 17:48
Was that gaming stroke? Again? Was that another clock? What was it?

Bud Beucher 17:53
Yeah, so the what? And of course, nobody ever knows. That’s why it’s practicing medicine. They thought that a little piece of the first clock broke off and traveled through the brain until it got into such a narrow spot that it it couldn’t travel anymore. But they had given me blood thinners at that time, clockbusters and things like that. So, you know, it didn’t have any effect on me.

Bill Gasiamis 18:25
Okay, so you’re around two weeks in, you’ve had two strokes, and you start to realize that there’s something going on. What were the deficits that you had to deal with? What did you notice that was wrong with you your body?

Bud Beucher 18:37
Well, I couldn’t use my right side and my left side was very weak. And, and, and I was pushing 280 pounds.

Bill Gasiamis 18:53
You were overweight.

Bud Beucher 18:55
Well, I don’t like the way you said that. You sound like my wife.

Bill Gasiamis 19:01
Wow, maybe that’s the problem. You don’t like the way it sounds.

Bud Beucher 19:06
You know, I’m just not tall enough for my weight.

Bill Gasiamis 19:09
I hear you. Okay, makes sense then.

Bud Beucher 19:14
So as I was withering away in the bed, I ended up coming home at just like 80 pounds lighter than I went in the hospital, and then subsequently I got down to 180 pounds so like 110 pounds I lost. And now I’ve I’ve been able to put weight on. It’s very difficult for me to put weight on, and I’m almost up to 198 pounds.

Bill Gasiamis 19:49
Okay, so the risk factors for stroke is age, weight. What? Smoking, drinking, any of that stuff.

Bud Beucher 20:03
I only drank in days ahead. Why? Okay, understood.

Bill Gasiamis 20:08
So then only about high blood pressure. Did you have high blood pressure? Yeah, I have them all. You had them all, wow, high blood pressure, just now smoking, and you had atrial fibrillation, yeah, yeah, so it was a cocktail storm. Yeah, perfect, perfect storm for potential stroke. So when you woke up, you couldn’t move your right side. And then what, how do you, how do you kind of deal with that? You, get the news, or do you realize that it’s not working? How did your brain wrap its self around that information, that news.

Bud Beucher 20:57
You know, and I say, Thank God. Thank God. I have four children, and they’re very dedicated to me. My wife is extremely dedicated to me, and so and my son in laws and daughter in laws are very dedicated to me. So I didn’t have a lot of alone time in the hospital. And so my son in law, Alex, He’s the doctor. He got me going right away. He bought any toy he could find on Amazon as a rehab toy, and he convinced me. Wasn’t hard to convince, but I did, if I didn’t use my extremities, they’d atrophy, the muscles would atrophy.

Bud Beucher 21:47
So he got me these squeeze balls that had little spikes on them and things like that. He got me bands. And so I still couldn’t use my right side, and at one point, this doctor who saved my life came in, and he went to shake my right hand, and I moved my right arm. And so he said, aha. So he knew that the connection between my brain and my right side was still good. And so, you know, I would tell my wife, I’m happy, but I’m not satisfied.

Bud Beucher 22:32
So going back to the story about me walking in the middle of the road, me insisting that I wasn’t she said to me, You’re not very happy. I said, Yes, I am. I’m really happy, but I’m not satisfied. So what that means, Bill is, every time you set a goal, that’s a goal in the future, right? And then when you achieve that, you have to set another goal, and if you don’t, you’re complacent.

Bill Gasiamis 23:07
Yeah, there’s no less resting on your laurels. You need to just continue the journey towards improvement, becoming better, more efficient, whatever the words are, stronger, stronger, yep, more wise.

Bud Beucher 23:28
Other than last night, I virtually given up all drinking, and I’ve lost, you know, maybe 90 pounds at this point.

Bill Gasiamis 23:38
I mean, great, you had a deficit with your hand, but also was the deficit with your leg? Was there an issue with walking?

Bud Beucher 23:45
Yeah, I had a very hard time. They sent me home in a wheelchair with a walker and a leg brace. And I was living at that time in a in the second floor of a walk up condominium, and so my wife and I had to figure out how I would get my fat ass up the stairs, and it probably took me, you could convince me, 20 or 30 minutes, with her help, to walk up the stairs. And I’ve seen the videos of me in the rehab room at the hospital, and, boy, I’ve come such a long way.

Bill Gasiamis 24:25
Yeah, that’s great. So how do you come to terms with what’s happened to you? So seven day a week at work, probably, I don’t know, maybe 90 100 hours of work a week at least, yeah, and then all of a sudden that stops entirely, and you have a completely different task. You’ve been doing that for decades and decades and decades. Your identity is all abou the work, the way that you go about work, the people, the amount of work that you’re doing.

Bill Gasiamis 24:59
All of your identity is built around how you how you interacted with the world for the majority of your life, and now it’s completely different. How do you come to terms with that? Do you have to come to terms with it? What’s the adjustment?

Bud Beucher 25:16
The adjustment was easier for me than it was for my wife. I’ll be very honest with you. I say it wasn’t easy for me. It wasn’t easy for me, per se, but you know, so I’m the youngest of six children, and the difference between my oldest, my only brother, Bob, and myself is 16 years. So he’s now in his middle, early 80s. And then I have four sisters, and the difference between myself and my youngest sister is four years.

Bud Beucher 25:57
And so on April the first they asked my sister, Michelle, who’s the number three girl? Actually, they probably volunteer you get to take over the resort. So she ran the resort, and she did it very well. I give her a lot of credit. It’s not an easy job. And you know, we all, we all do things differently, and her style was much different than mine. But you know what? It’s okay. There’s more than one way to skin a cat.

Bill Gasiamis 26:36
That’s my favorite saying. Were you somebody who was sort of happy to pass the mantle on. Was it a relief?

Bud Beucher 26:50
It came with some anxiety, a little bit, because I would see Michelle, and I’d see her doing things with the staff that I wouldn’t do, but I couldn’t say anything to her, because I didn’t want to get between her and her employees. And you know, I had to focus on my recovery. So, you know, it’s about a mile from my condo at that time to the lobby. So I’d get dressed, I’d walk down, I’d work in quotes, I’d go back up for lunch. I’d lay down and take a nap for a couple hours. I’d walk back, I’d work and then I’d walk home. So I was incorporating that commute, if you will, with my rehab.

Bill Gasiamis 27:51
Okay, so you went back to work after the stroke, after coming home, how long did it take for you to come home and get back to work?

Bud Beucher 28:03
I was released from the hospital on May the 17th, and I probably came back to work early June.

Bill Gasiamis 28:10
Okay. Was it too soon?

Bud Beucher 28:14
It depends upon how you ask.

Bill Gasiamis 28:16
I’m asking you clearly not. Okay. I asked your doctor, your doctor son.

Bud Beucher 28:25
He would probably say no, okay. He thinks that I needed to have a purpose, yes, and that purpose for me was the resort and my employees and it was good for me to see my staff, even though they weren’t my staff any longer, and it was good for me to hear those accolades and support. It was it was good.

Bill Gasiamis 28:59
I imagine there’d be some satisfaction, definitely in getting back to where you were before, even in a different capacity. But then also the encouragement from other people, so people that you interacted with, the lovely faces or that type of thing that would be amazing, all right, relate to that. That’s perfectly fine. And also going back to work, I do consider to be a therapeutic thing, both emotionally, mentally and physically. And I think it’s part of recovery.

Bill Gasiamis 29:29
And if you’ve got a great employer for people who are not self employed, for example, if you’re got a great employer who understands the extra needs that a stroke survivor might have to ease up on the work and to have a little bit more downtime, then they could play a massive role in supporting people to get back.

Bud Beucher 29:50
Yeah, you in my opinion only, you can’t stay at home and. Look at four walls, and yet, in the same respect, you can’t go back to work and go at the same pace that you had done before the stroke, at least not in my case. Now there are all different kinds of strokes.

Bill Gasiamis 30:15
I would say, in nobody’s case, I would say everyone needs to attend to healing more than attend to their work, even if it’s just a short amount of time or an extended amount of time, whatever it is, the brain healing journey takes a while, so it’s really important to perhaps incorporate work, but not make it the main goal. And anyway, Stroke Recovery doesn’t allow people to go back to work the same way that they went back before, especially in the early days. It’s so hard.

Bud Beucher 30:47
No, it truly is. And I’d be lying to you if I said that I had the stamina today at 68 that I had at the stroke when I was 64 first of all, I was in that groove, you know what I mean, and I didn’t know any better.

Bill Gasiamis 31:06
How much did your right side come back online in the early days, in that time where you were walking back to work and up and down and all that type of thing, how much did your right side come back online. Were there still areas of improvement that needed to happen?

Bud Beucher 31:25
Yeah, in fact, there’s still areas of improvement. I go to the gym probably two to three days a week, and I have a personal trainer, and his day job is in home physical therapist. So he’s got both the gym experience as well as the, you know, the deficit care. And so Corey is his name, and I was there this morning. And, you know, I would say that I am 75% back.

Bill Gasiamis 32:16
How about then?

Bud Beucher 32:19
No, I could hardly walk. Like I said, they sent me home with a wheelchair and a walker and leg brace. And if I was able to walk down the stairs and of the condo and get through the condo parking lot, I was exhausted.

Bill Gasiamis 32:36
Okay, so I was exhausted. So what kind of rehabilitation. Did they throw at you when you were in rehab?

Bud Beucher 32:45
Well, so when I was at the hospital, they gave me speech therapy, occupational therapy and physical therapy, and what I got was three, one hour sessions for each of those disciplines, and literally, I would sit in my wheelchair at the edge of my door and I checked my watch, and if the physical therapist, who was great, by the way, showed up five minutes late, I said, You owe me five minutes.

Bill Gasiamis 33:20
Fair enough.

Bud Beucher 33:21
And when we got done, she wanted to take me back, and it was five minutes before we were due to get out, I’d say, no, no, no, you owe me five minutes, and we’d walk up and down the stairs. Now it wasn’t pretty, and I mean, I was, I was huffing and puffing, but I wanted, I wanted every minute that I could get, because I just, I just needed to recover. I’ve got 11 grandkids. I want to get on the ground and play with him, yeah? I want to hold him in my arms.

Bill Gasiamis 33:58
Yeah, fair enough. That’s great motivation. So this episode is sponsored by Aviv clinics. They those guys I discovered oxygen hyperbaric oxygen therapy a little while ago, just through just trying to work out what types of information and tools that I could tell stroke survivors about regularly, that hopefully some people might be able to benefit from, that they didn’t know about, right and the Aviv clinics, I’ve done three interviews with the guys from Aviv clinics before now, because I wanted to share what hyperbaric can do.

Bill Gasiamis 34:39
I found in my mind, I found the right type of people to join me on the podcast to share that information, and one of the things that I liked about it was that they they had the diagnostic tools before the. Somebody committing to their protocol to determine whether or not somebody was a candidate, which is something you don’t get a lot in other kind of avenues of recovery, whether it’s stem cells, whether it’s etanercept or whatever the other options are, you very rarely get the diagnostic part is somebody a candidate, right?

Bill Gasiamis 35:24
So it was really lovely to share that bit of information and not to and and to do it just willingly, without requiring sponsorship or anything like that. What’s cool is that now we’ve come full circle, and the guys are supporting me, as I felt I’ve supported them, and it was just brilliant. And when they said, you know, would you consider another episode? I thought absolutely I would. And a sponsored episode is amazing, because that helps the podcast keep going, helps me grow community, share stories, hopefully get to 1000 interviews.

Bill Gasiamis 36:03
So I want to be transparent about that. Firstly, for the people listening, I’ve already, at the beginning of this episode, announced that this is a sponsored episode, that it is about Aviv clinics and your journey and and now I want to talk about Aviv. I want to understand how you stumbled or came across the hyperbaric oxygen therapy as this is something that you might want to consider. How does that happen for you? Where? Where did that happen?

Bud Beucher 36:32
Our oldest son, Nicholas, is the CO-CEO of a company called Tavistock, and they are in Orlando, or actually they’re worldwide, but they have a very large presence in Central Florida. They are the founders, the creators, the developers of Medical City, so that’s where the VA hospital lives, and you know the new Moores clinic, and you know, all those great organizations, and they’ve got houses and everything, so anyway, long story short, they called on Nicholas, or Nicholas called on them to see if Aviv would open up a satellite office down at Lake Nona.

Bud Beucher 37:19
Because he is committed to the Aviv concept. And so when I had the stroke, he spoke to his mother, maybe in the fall of the year, and said, you know, you all should take a look at the Aviv program. It’s fascinating. I’ve been there. Dave, at the time, was the president of Aviv, and so he came down to Lake Nona, met with my son and our son, and so we went up and toured the facilities. And they are world class, without account. And they are obviously, in retrospect, they’re not snake oil salesmen.

Bud Beucher 38:06
There’s always somebody who’s got, as you said, and you didn’t say it in these words, they’re trying to pull the wool over your eyes some way or another, and it’s always data driven. So when I found out that they were and you correct me if I’m wrong, in Israel and Dubai and then Brownwood, which is 3540 minutes up the road from where we live, I thought to myself, Wow, this has got to be great for me. Now, don’t get me wrong, it is a full time job, and it’s 12 weeks, 12 weeks long, and it’s a week or 10 days of onboarding.

Bud Beucher 38:57
And they go through a battery of tests, both physical emotional and, you know, cognitive and and then on the way out the door, they repeat the test, so they compare the before and the after. Now the after test, maybe is six months after, but they do do that comparison, and then they they present that work to you. And so they have nutritionists, they have psychologists, they have MD doctors, and, my God, the the hyperbaric chambers. They’re like, they’re like, first class airplane seats, you know?

Bill Gasiamis 39:42
I mean, it’s really cool, and it’s a room you walk into it, don’t you?

Bud Beucher 39:46
Yeah, you stand up and and there’s, I don’t know, clients, I guess is what they call them. So I was one of their clients, and my wife came with me because I knew. If she didn’t come with me, I would, I would tend to be less successful. We’ve been married for 43 years, and we met at the University of Arizona in the fall of 1976 so I’ve been with this lady. She’s been with this man since 1976 the fall.

Bill Gasiamis 40:20
Wow, let’s go back a little bit. We’ll talk about that in a minute as well. Okay, I found that comment interesting that if she wasn’t there, you would have tended to do have a less successful recovery. Let’s go back though before we talk about that. I’m very interested in that, because you told me at the beginning that your mindset, you alluded to your mindset being a completely different thing compared to what you just said now.

Bill Gasiamis 40:47
So I’m going to dig into that in a little bit. Tell me about the onboarding so you discover a VIV and then you say, I think I might want to access your services. Yes, and then what happens? What do they do?

Bud Beucher 41:04
Then they make arrangements for you to go right in the same building and get a series of tests through Lake imaging. So Lake imaging has a facility right there in that same complex, and so you do CT scans and MRIs, etc, etc, blood work and things like that. And then they give you this huge report. I happen to have it here. And they give you this huge report, and it’s got color imaging of my brain. I don’t know if you can see it.

Bill Gasiamis 41:38
I can.

Bud Beucher 41:40
And the black box are where the stroke was right down the middle of my head and on basically the, I guess the left side, because my right side is affected. And they were very honest that tissue is dead and will never come back, not in a million years. It doesn’t matter what I do. But the reason for the hyperbaric chamber is, the theory is that you go for two hour dive, 20 minutes on pure oxygen, and then I think it’s five or 10 minutes on just whatever the makeup of the air is in your in your body is kind of freaking out, and it’s saying we don’t have enough oxygen.

Bud Beucher 42:31
So your your body is growing, not just stem cells and but it’s regrowing vessels and so the theory is it’s like a nuclear bomb. You get closer to the epicenter and it’s dead. Never come back. But the further you go out, out of the epicenter, you’ve got hope. So in arrears, you know, we did we I had a comparative report, and it showed my brain activity colored, and it was much improved.

Bill Gasiamis 43:11
So, but the onboarding goes for how long? Two or three days. Okay, so they’re determining your your baseline, for example, there, yes, your deficits. They’re checking your brain activity. They’re checking to see what is recoverable, what isn’t recoverable. And then they determine the protocol and what you’re going to experience after that. In that in those early days.

Bud Beucher 43:42
They’re very honest with you. They’re very honest with you. They said it very clear expectation.

Bill Gasiamis 43:48
And what do they say? They say you might not get this back. This might happen. That might happen. How does that conversation go?

Bud Beucher 43:54
They never limit you. You limit yourself. Okay, so as we went through, I would say, about halfway through the 12 week program, both my wife and I realized I was coming out of my shell. So I’m typically a very gregarious person, and I think of myself as pretty funny, and I was pretty silent. I was, I was playing all of these conversations in my mind, but I wasn’t verbalizing. So if we were in a room and you were talking to my wife, I was playing my participation in my head. I just wasn’t verbalizing.

Bill Gasiamis 44:35
It okay? So when you’re in the hyperbaric chamber, you walk in one, is it one session a day? Is it multiple sessions?

Bud Beucher 44:45
One session of days, one session per day. And you, you, you’re supposed to pick a dive time that you’d like. So either seven in the morning as an example, and they have four chambers, all told. Seven, 911, one, I think maybe one is the last time. But it could change, since I was there in the fall of the spring weather of 22 – 23.

Bill Gasiamis 45:13
And you pick your time and you walk in, do you sit down?

Healing the Brain, One Breath at a Time with Hyperbaric Oxygen Therapy Stroke Recovery

Bud Beucher 45:19
And there’s probably 14 client seats in that chamber. It’s the largest hyperbaric chamber outside the US Navy. Wow. In the world. They have these chambers built for them in Australia.

Bill Gasiamis 45:36
In Australia, and we don’t have that opportunity to access that type of care here at all. So you’re in Australia right now. Yeah, we’re in Australia. So we have access to hyperbaric chambers, but you have to go to like a health club or a some kind of other like organization that has facilities that you might access Yoga, you might access all those other things there, and then they may have a chamber.

Bill Gasiamis 46:08
But it is a individual based, yeah, and it’s not just one person chamber, yes, and it’s not and there’s no medical person on site. There’s no way to determine whether you’re a candidate, whether you should be in there, what the risks are. There’s nothing like that. So you’re kind of going in a little bit, I suppose, you’re going in for a like, a bit of a treatment that’s not medically based. It’s more of a idea that you go into the chamber and it’s benefiting from you, but there’s no protocol. There’s no understanding.

Bud Beucher 46:48
So when you sit in these chairs, and again, I use the term airplane seats, very first class, you have a arm that an iPad gets attached to, and you’re supposed to play games with them. Excuse me. And so it’s golly, I can’t even think of name it.

Bud Beucher 47:16
Anyway, they have all these games, and they get harder and harder, faster and faster as time goes on. HQ, brain, I think. Ah, brain. HQ, yeah, yes, that’s it. And and so they they decide what you’re going to play while you’re in the chamber based on your interactions with the staff. So whatever your deficits are, they’re going to play the games that deal with that deficit. Yeah, so, so if memory is your deficit, guess what? You’re going to play memory games.

Bill Gasiamis 47:59
So the memory games are designed by Brain HQ. Brain HQ was, I think, in part, developed or started by, or founded by a gentleman called Michael Mirza Nick, somebody who I’ve interviewed, who is considered the godfather of Neuroplasticity, because in the 90s, he was the one and and the teams that he worked in, the scientific teams that he worked in, that kind of break broke through and developed the first cochlear implant for people who had lost their Hearing and and brain. HQ is designed to encourage Neuroplasticity.

Bill Gasiamis 48:43
That’s the entire point of it, right? And from my understanding, when you’re in a hyperbaric chamber receiving the benefits of the hype of the oxygen therapy, as well as being in the dive that the brain is trying to support, itself by releasing the stem cells and doing all the lovely things that it does when it’s in those conditions, and at the same time.

Bill Gasiamis 49:11
If you’re firing off the particular tasks that you have deficits In that that is going to kind of pinpoint the area where right Neuroplasticity needs to happen, and it will support those, the growth of those new neurons right, more so than it would have if, if it was exercise that you were doing outside of a chamber.

Bud Beucher 49:39
Right, you got it.

Bill Gasiamis 49:42
You should work for Aviv well, they haven’t offered yet, and I’m far, far away, but it’s okay. Maybe you can open up a satellite office. Maybe, maybe I could be the guy. Yeah, yeah. But the. That idea I’m really fascinated by, and that’s kind of why I initially interviewed the guys, because I wanted to understand how it worked, and I wanted to understand how it was different than the therapy that I could quote, unquote, get at the Health Spa, which is not really that targeted. It may be beneficial, but it does also concern me.

Bill Gasiamis 50:25
And I have spoken to a few people that have been to a health spa type of scenario, walked into a chamber, it has concerned me a little bit that what happens if something goes wrong? What if you need to come out of the dive? What if you need to be treated medically, right? You have an inner ear problem, and the pressure causes challenges, like, there’s a whole bunch of things that concerns me about them.

Bill Gasiamis 50:49
And that’s kind of why, like, because I almost as somebody who can’t access hyperbaric medically through the Australian Medical System at all, which I’ve tried, by the way, I’ve asked my neurologist, my surgeons, I’ve asked the doctors like there is no way, unless you are experiencing the bends from diving in Australia, you cannot access a proper medically supervised hyperbaric chamber.

Bill Gasiamis 51:21
So that’s kind of why I know about it, because I’ve spent a lot of time trying to get that type of help myself. So you said it’s a full time job. Like, what does that mean? Are you staying at the facility, or because it’s close to home, you’re traveling backwards and forwards.

Bud Beucher 51:42
So we would get in the car. We had to be there 30 minutes before the dive time. So I’ll make this up up. Let’s say we were on the nine o’clock dive. So we leave our house at 730 we’d get to the parking lot anywhere from 10 after eight, eight o’clock, depending upon how fast I drove. And we’d walk in, we’d go in the back. They always had somebody there that takes our vitals and things like that.

Bud Beucher 52:18
Then we would sit in the waiting room, and we would wait, and then you had to change your clothes. You had to wear special shorts, special shirts, you know, booties, things like that, because you don’t want static electricity, because fires in hyper bear chambers don’t mix.

Bill Gasiamis 52:40
Wow, okay.

Bud Beucher 52:43
And there was always somebody from the Aviv staff inside the dive chambers. So it’s 12 weeks long, so that’s 60 sessions, and then they would and it was five days a week, and they didn’t want you ever, if at all possible, to miss a session. So it’s one after another after another for 12 straight weeks. So we would go, and then they would schedule things like PT, weight training, nutrition education, psychological, you know medical.

Bud Beucher 53:27
Before or after the session, and it’s got a big waiting room in it, and it’s very first class, and They’ve got tile floors. And so even still, today, I don’t walk backwards very well, and so I would walk backwards inside the lobby waiting for my next session to start, walk back and forth backwards, and I’d follow the joint lines, and I always have a sense of where I was, wow. So I’d stop before I ran into the wall.

Bill Gasiamis 54:07
So the so the dive is only one part of the treatment on the day.

Bud Beucher 54:16
It’s a significant part. But they treat you in a holistic way. So the brain HQ is part of it. That’s also in the diet, but that’s a separate part of it. And then when you’re done, they allow you to continue with that for one year and and meaning it’s included the one year is included in the subscription. And then the PT is as you can get in, and they put you on these wild treadmills. They’re really cool. You get a harness. So you can’t fall down. And then you have these games that you play. They’ve got, you know, reaction times and things like that.

Bud Beucher 55:10
And you got to look for the they flash. And then they’re, they’re like, five places wide, five places up, and they change colors and they have now, the faster you get, the subtler the differences are. So when you’re when you’re a rookie, all blue will show up, and there’ll be one that’ll be orange. You got to find the different bird as an example, and they judge you based on time and accuracy. So it’s very, very analytical. There’s, there’s very little subjective.

Bill Gasiamis 55:53
Understand, very thorough. Yeah, so the protocol 12 weeks, but you do you get assessed in between those 12 weeks? Is there any time frame where there’s an assessment? Or do you just go in for the full 12 weeks and then you get assessed again at the end?

Bud Beucher 56:12
You’re assessed all the way along. Now, you’re not necessarily assessed by the dive, but you’re assessed all along. So you on the brain, HQ, you know, you do it four days, and then on the fifth day, you kind of do a test, if you will. And then that test at the at the periodically, will accumulate. And then they tell you “Oh, you’re doing better here. You’re doing better there.”

Bill Gasiamis 56:45
So there’s feedback so that you can see your problem.

Bud Beucher 56:48
Yeah. And even in PT, there’s feedback, and in the weight room, where you do calisthenics and things like that.

Bill Gasiamis 57:00
Yeah, wow. I never knew about that part of it. I thought the protocol was literally only the hyperbaric stuff. That’s cool, knowing that all those other things happen.

Bud Beucher 57:11
Yeah, and then they have, they have a dietitian, and he talks to you about eating healthy and things like that. And

Bill Gasiamis 57:17
what was that like, learning about diet? Were you an unhealthy eater in comparison?

Bud Beucher 57:25
In retrospect, I probably was, you know, because I was 100 pounds overweight, yeah, so it’s hard to be healthy, eating healthy and being 100 pounds overweight.

Bill Gasiamis 57:38
And how did you find the adjustment? Did you stick to that diet, dietary change? Did you understand the benefit of it and why it was necessary?

Bud Beucher 57:48
Yes, I did, and I’ve stuck to it pretty well. Like today, I had granola with a protein drink, and then I put protein powder in my blender, and I put protein drink in that, and that was my breakfast. And for lunch, I had a bagel with jelly, not a good choice, but then I also had a granola with a protein drink mixed on top of it.

Bill Gasiamis 58:18
What would you eat for dinner?

Bud Beucher 58:20
I’m going to my brother Bob’s house so whatever Linda can serve.

Bill Gasiamis 58:27
Yeah, well, you know, I reckon there’s a bit of improvement there, even at granola and and bagel. I reckon even improvement that can be done. But I understand, like, the benefits of perhaps not drinking the amount of alcohol that you were drinking.

Bud Beucher 58:50
They tell you, when you’re in the hospital that you’re not supposed to drink period for the first two years post stroke. And I was pretty good with that. Maybe I had three or four drinks in total the first two years. And I’m not proud of it, but last night, I had three drinks. I mean, what the hell Life’s worth living, right?

Bill Gasiamis 59:18
Well, maybe let’s unpack that a little bit. There’s a couple of things I want to unpack and check up on you on. So drinking, the issue with drinking is that it damages the brain cells, right? Because it crosses the blood brain barrier. So any work that you’ve done, you’re potentially putting at risk and the damage in the area that already is dead, you might extend that. You might make it worse. So you’ve spent all this time, money, effort, in your recovery, and then, you know, you put alcohol in in your body and in your brain, and it’s, it’s like a proper poison.

Bud Beucher 59:54
Hold on, hey, Jane, yes, can you find a charging cord? For me, really, one please, for your phone. Yeah, my phone, yes. Thank you dear.

Bill Gasiamis 1:00:06
So that’s kind of the the thing, like I would, I would push back on that for that reason. Now, there is tons of studies that also say that there is no safe amount of alcohol for any human being, whether they’ve had a stroke or not, and I know that’s hard to say, because what we’ve had to deal with is we’ve had to deal with all of the advertising, all of the marketing.

Bill Gasiamis 1:00:30
All of the social side of why people should drink and why it’s okay to have one glass or two with dinner and all that type of thing. But the reality is, is that if you’ve had a stroke and you’ve done so much work and effort to be better, alcohol stops people from being better.

Bud Beucher 1:00:53
Well, you know, and I’m not defending myself, so please, no, I probably have a three or four drinks in a month? Yeah? Just last night I happened to have three.

Bill Gasiamis 1:01:12
Yeah, and again, I’m not saying that people should never have a drink. What I’m saying is that’s what that’s what the data says. So people who should be aware of it, and doctors in my mind, especially doctors treating people with neurological challenges, in my mind, would be best advising their patients the way that I advised you just then, making them understand like you’re putting all this effort into recovery.

Bill Gasiamis 1:01:42
And you know alcohol is is sort of one step back, just doing it to yourself. Now you also said that if you didn’t have your wife with you at those sessions, that you perhaps wouldn’t have recovered as much as you have. So why? Why is that? How did she support you in that part of your journey?

Bud Beucher 1:02:06
Well, you know, I knew I had to go. I wanted to go, and I knew I wouldn’t be as successful on my own as I would be with Jane. So what does that mean? That means I’d be driving up there by myself. I’d be going through the dive by myself. I’d be driving home by myself, and I’d be really tired at the end of the day. So it’s probably round trip, all included. It’s probably on a short day from Howie up to Vive, the dive back to Howie. If you have nothing going on other than just that, for that day, you got to figure it’s going to be four plus hours.

Bud Beucher 1:03:01
And if you have a session, it’s not like you get out of the dive and go immediately into PT, you might have to wait for an hour or two, and so it could be anywhere from five hours to as many as seven or eight hours. So that’s why I say it’s a full time job, yeah, and it’s in its I mean, it’s exhausting. And I slept a lot, and Jane did too, and yet she she wasn’t trying to recover from a stroke, but she went through the same tests, the onboarding tests that I did.

Bud Beucher 1:03:37
She went through the same protocols and and sessions that I did, and she she got the same measurements that I did, and it really upset me that she did better than I did.

Bill Gasiamis 1:03:59
Wow, so you guys went through it together, the entire 12 week treatment. I thought she was just there in body, but she actually attended all of the sessions at the same time.

Bud Beucher 1:04:15
She sat next to me inside that dive chamber for 12 weeks.

Bill Gasiamis 1:04:20
Okay, Well, I love that that happened, because there is nothing better than doing recovery with somebody that’s supportive with a community of people who are like minded. It just makes everything better. Going to the gym is boring, unless you know somebody at the gym, right. What am I going to do? Go to the gym and push weights? You know, there’s some kind of weird motivation.

Bud Beucher 1:04:49
We saw a lot of couples that would do this together, and they were married, and they were supportive of each other, sometimes the man. In my case, was there for a reason. Sometimes the wife was there for a reason, right? But you know what? She’s my life partner, yep. And in terms of expense, what? What is your health? Course, my goodness, I mean, you’d spend your last penny to get your health back?

Bill Gasiamis 1:05:23
Yeah, absolutely everybody would. I’ve met so many stroke survivors that don’t have access to endless amounts of resources. Finances are always an issue after stroke, especially if you haven’t if you happen to have a stroke and you haven’t established a good war chest, or, you know, it’s quite a challenge, and and they would spend every last and they do spend every last dollar to get their health back.

Bill Gasiamis 1:05:54
And there’s only sometimes so far that people can go, and the spectrum of stroke is so wide that I might not be the exact representation of what stroke looks like for somebody else and somebody’s in a wheelchair is not the exact representation of what stroke would look like for some third person. So it’s it’s lovely that you combine that with your partner. I think one of the luckiest things that I went through was a really supportive partner.

Bill Gasiamis 1:06:29
She was everywhere that I was when recovery was happening. We didn’t understand, we didn’t know about our hyperbaric back then. But again, we can’t access it, even if we do know about it, unless we come to the United States and go through the clinic.

Bud Beucher 1:06:44
Well, if you want, you stay with us, Bill, we’re only a half an hour south of the brown wood.

Bill Gasiamis 1:06:51
Well, I might take you up on that. You never know. Keep my number. Yeah. So it’s really cool. I want to speak about that, and I’ve spoken about that, that part of your journey with your wife, because it’s so important to have community, to have people who support you, to have people who have your back, whether you’re they’re your wife or just the neighbor, or an Awesome therapist or a doctor, somebody you have to reach out and ask people to support you if you haven’t got somebody directly, because it’s such an important part of recovery.

Bud Beucher 1:07:30
So you You are so right? And as as we went through the program, we ran into a lot of people from all over the world, and I don’t remember his name. There was this one particular young man. He probably was 30, and he’d taken a fall, and he was from South America, and he had traumatic brain injury, and his mom and dad tried to get a visa to bring him to the States for treatment, and I’ll make this shit up, for probably four years, and they finally got the visa. And when he first came in, we would see him, and he would be in a wheelchair.

Bud Beucher 1:08:21
And as he went through, he then was getting out of the wheelchair. And we’d say hello to him every day, and you know, how are you? How you doing? And toward the end, when we were graduating, he was looking us in the face and acknowledging us. So you know, he’s living proof that Aviv works.

Bill Gasiamis 1:08:46
So and you too, right? So what about your journey? So what was different from day one to the end of day 60?

Bud Beucher 1:08:59
My personality, my personality came back to life. It was dormant. Like I said, you know when, when, when I got out of the hospital, we Jane and I would have dinner together, and it would be an hour and a half of silence. Now I’d be, I’d be responding to her in my head, but I wasn’t verbalizing, and she was sad and lonely that I was not there. So Aviv not only gave me my life back, but Aviv gave her her husband back.

Bill Gasiamis 1:09:43
That’s pretty cool. What about your deficits? What about your physical injuries? How did they improve?

Bud Beucher 1:09:51
Well, like I said, I’m able to use my right hand real well, and you know, we’re. We just my trainer, and I just had his scale brought in from home, and it’s the Humi scale. And so on my phone, it shows me my composition of my my my body, right arm, left arm, torso, left leg, right leg, and you can see that the deficit is in my right leg. My right leg is four pounds of muscle lighter than my left leg. Wow. So you know, when I go to the gym, I try to only work my right leg.

Bud Beucher 1:10:37
So I’m trying, and I’m eating a ton of protein at the recommendation, suggestion of the VIV folks. And so that’s why I told you what my formula was in the morning. And I eat a lot of fish, and not so much red meat, but I eat red meat.

Bill Gasiamis 1:11:00
So the deficit in so you feel like the most results that you got from VIV was being able to develop your speech. Was it to bring you back online? Somehow that conversation that you were internalizing. How did it externalize? Like, why was it internalizing?

Bud Beucher 1:11:26
My personality just blossomed, and I don’t know why it did. Maybe it was Aviv, which I’d like to think it is. Maybe it’s guy, you know, I’m a church going Catholic, and we go every week, and you know, I’m so blessed. I’m so thankful to God. And, you know, I don’t know, yeah, maybe it’s, maybe it’s a combination of Aviv and God. Why not? Why not? Is right? What you know what? You can’t you can’t deny that my personality is much better. Now you didn’t know me before the stroke. Always thought I was pretty funny and, you know, gregarious, outgoing, never knew a stranger.

Bud Beucher 1:12:22
And you know, I went to the National Training Center, when I got out of the hospital for follow up work, and they were great people, too, but they didn’t have a hyper bear chamber. They had a gym, and they had physical therapists, they had speech therapists, they had occupational therapists, and I clept out immediately of occupational therapy, and, you know, about two weeks into it, I graduated out of speech therapy, so I was only left with P.

Bud Beucher 1:13:00
And it’s it was hard for me at the time to walk up and down the steps. Well, we took a 25 day cruise from Tampa to Alaska, and we virtually never used an elevator. We only walked up and down the stairs.

Bill Gasiamis 1:13:18
Yeah, that’s one of the things that I do. I have left side deficits, and my left side is probably weaker than my right side, and my left side, the muscle structure is probably smaller as well than it is on the right side. And when I go to a place that has sometimes you see stairs, and then you’ll see an escalator right next to it, just for people who can’t use the stairs. And even though it’s hard, I always use the stairs just so I can give my leg even more opportunity to remain remain capable of doing that function. How old are you? I am 51

Bud Beucher 1:14:02
You’re just a pop, yeah, I’m 68 and, you know, I’m really driven.

Bill Gasiamis 1:14:14
That helps. I know that being driven definitely helps. I wanted to also sort of ask you, I know that the deficit has left your muscle not as strong. So when I asked this question, I’m not necessarily talking about your guns or your or your legs or your muscles, do you feel stronger than before the stroke? Somehow? Do you feel kind of more.

Bud Beucher 1:14:41
No, I definitely not. You know, definitely not. But you know what? In comparison to when I was released from the hospital, I am so much stronger today. Yeah, I’m happy, but I’m not satisfied.

Bill Gasiamis 1:14:59
Yeah. It. So there’s more work to do.

Bud Beucher 1:15:02
Absolutely, you only have one of two choices, improvement or decline. There’s no such a thing as stabilizing, yeah, so it’s a conscious choice you make every day, when you go to bed, yeah, are you going to wake up tomorrow and decline? Are you going to wake up tomorrow and improve? Yeah, I choose to improve.

Bill Gasiamis 1:15:24
That’s a great choice. What does life look like now? What are your days look like now?

Bud Beucher 1:15:30
We’re traveling up a storm. You know, we’re absolutely enjoying our retirement. You know, I told you we went on a 25 day cruise back in April, and the day after we got back, I had hernia surgery. About eight or nine days later, we flew to Chicago, and then about two weeks after that, we went to Georgia for a week on a family reunion. And two weeks after that, we went back to Georgia, and we failed around with our my high school classmates, four of them and their spouses. And then about a month after that, we went to Colorado.

Bud Beucher 1:16:13
And we stayed with our we traveled with our daughter and the surgeon, her husband and their four kids and their nanny to Steamboat Springs, and then we came back from that, and we were back about five days. We went out to Seattle, and we went with on my fraternity reunion. We went Seattle, back to Seattle on a ship, but we went in four or five days early. We went to Vancouver, Victoria, and we flew on the seaplane. We just had a blast. And when we got back from that trip, let’s see.

Bud Beucher 1:16:56
We went down to Fort Lauderdale. Week before last, we went on the bright line train. We went to Pier 66 that’s the hotel that Nicholas is our oldest son’s company owns. And when I was a little boy growing up, we were snowbirds. So we spent six months in Illinois and six months in Fort Lauderdale, and we were on Isle of Bahia, and we literally watched the pier 66 be built. And so Nicholas’s company bought it. Maybe I’ll make this up six, eight years ago, and they’ve totally renovated it, they’ve changed it, they’ve put in condos. It’s just a fabulous hotel.

Bill Gasiamis 1:17:39
After listening to that story about your travel experience, so I feel like I need a vacation to get over everything I’ve just heard about.

Bud Beucher 1:17:50
Well, I’m not done yet, and I’m on a 23rd of October. We’re going for four nights after Chicago for my 50th high school reunion, and then we get back on the 26th or so of October, and then on the third of November, we’re going to fly out to Hawaii. Wow, we’re gonna take an intra Island cruise, and we’re gonna spend five nights on the front end of the cruise on wacky beach. And then we get back on the 16th, I think of November, and then, in theory, we’re done for that year.

Bud Beucher 1:18:27
But we’re going to watch our two grandchildren, our our youngest daughter and her husband are going out to Las Vegas, and then when they get back on Monday, then Monday night, we’re going to go down to our oldest son’s house, and we’re going to help their kids survive five nights without mom and dad. And mom and dad are going to England,

Bill Gasiamis 1:18:50
and you guys are going to be the full time carers of these children for five days.

Bud Beucher 1:18:55
Yeah. Grandkids are the best. If I knew grandkids were this good, I’d have skipped the child stage.

Bill Gasiamis 1:19:03
That’d be an interesting thing to see you do. That have been very interesting. Sounds like the mission has completely moved away from workaholic. Sounds like travel a Holic is the new addiction?

Bud Beucher 1:19:22
Yeah, well, I don’t know if it’s an addiction. My wife says I have a fear of missing out.

Bill Gasiamis 1:19:28
FOMO, yep.

Bud Beucher 1:19:29
Yeah. FOMO.

Bill Gasiamis 1:19:30
Yeah. Fair enough. That’s great, and especially, did that fear come about more so after the stroke, did you kind of get a bit of an understanding that perhaps we’re not here forever, and we need to squeeze some things in that we’ve been missing out on.

Bud Beucher 1:19:47
Yeah, we worked our fannies off, our whole lives, you know. And we sacrifice so much. Not just for our children, but the business. You know, for the first 10 or 15 years of our marriage, we only drove to Chicago and vacationed at my mom and dad’s house, or we drove to Texas and lived or went to Jane’s mom’s house, and we never had a vacation per se, if you will, outside of that two experiences, and the reason was financial and time.

Bill Gasiamis 1:20:31
Yeah, my gosh, I’ve just gone blank. Let me hang on a sec. I had the question.

Bud Beucher 1:20:43
Do you have brain drain image?

Bill Gasiamis 1:20:45
I don’t normally, I’m pretty good.

Bud Beucher 1:20:49
You’re having a senior moment. I am.

Bill Gasiamis 1:20:54
I was gosh, I was going to ask a question that was really relevant and I forgot. Doesn’t matter. Okay, so I Yes. Now I know what I was going to ask. I was going to ask about your overall general health and well being. How’s the blood pressure? Is that being managed? How is all the other little things that you took into stroke, into the days before stroke, with you? What is that like now?

Bud Beucher 1:21:18
So when they sent me out of the hospital. I’ll make this up. I was on 13 different medications, and I’m off of virtually all of them, but Eliquis, which is the blood thinner I’ll be on that the rest of my life. Even though I’ve had two ablations, and knock on wood, I am not in AFib anymore, and I have a loop recorder in my chest. I’m verifying that with my cardiologist on a monthly basis, but I’ve had an episode of transient global amnesia. It took place at the over just before the Fourth of July, and I was at the gym, and then my wife came to the gym.

Bud Beucher 1:22:11
I don’t remember, and so it was probably the episode probably lasted, an hour and a half or so, and that’s medical speech for we don’t know what’s wrong with you. And her brother had that in Texas for six hours, and you know, he just can’t get it back. So they ran a whole battery of tests on me, and I spent two nights in the hospital just this July. And so the protocol when they release you from the hospital with that is they put you on a statin. So I’ve got to this last prescription, and I’m going to get off the statin.

Bill Gasiamis 1:22:57
Fair enough. What’s the thinking behind the statin? If somebody experiences global, transient amnesia.

Bud Beucher 1:23:07
Got me, you have to ask the medical guys, yeah, just their protocol.

Bill Gasiamis 1:23:14
Right, and it’s temporary. They put you on it for a period of time, and then you get off it.

Bud Beucher 1:23:18
Well, I want off of all my medications as much as I can. I’m I push the envelope all the time.

Bill Gasiamis 1:23:29
And anyone listening who wants off of their medication should only do that in conjunction with their absolutely professional do not just get off any medications on their initial no.

Bud Beucher 1:23:40
You need to consult your doctor, absolutely, but you have to advocate challenge. Why am I on this? Do I need to be on it? I’d like to get off of it. And whether it’s your urologist, your heart guy, or whatever.

Bill Gasiamis 1:23:59
Yeah, if there’ll be people listening to this that have just recently experienced a stroke. What would you like to say to people like that who are hoping to gain from listening to people share their story about the journey that they’ve had with stroke?

Bud Beucher 1:24:21
You know, I tried to, I tried to be as uplifting as I can. And so one of the things I always used was ants don’t give up, and neither do I. So when your listeners want to give up. Just say that to yourself. And the other uplifting statement I think I say is, I know I say it, but I think it’s uplifting. Is no hill for a mountain climber, and so you have to have. Mantras you have to motivate yourself. Nobody’s going to motivate you but yourself.

Bill Gasiamis 1:25:07
What surprised you most about yourself after this journey or during this journey.

Bud Beucher 1:25:15
How far I’ve come, how effective and successful I’ve been, how far I’ve improved, how much I’ve regained. I am, I am, I’m in awe.

Bill Gasiamis 1:25:32
And on that note, thank you so much for joining me on the podcast and sharing your story, Bud.

Bud Beucher 1:25:39
Bill, thank you for allowing me this opportunity to share my journey, and the journey wouldn’t be nearly as good without Aviv. Aviv has helped me get my life back.

Bill Gasiamis 1:25:52
Yeah, and also, thank you to Aviv for sponsoring the episode, being supportive of the podcast, and returning what’s and creating that full circle where I found that their interviews that I’ve done in the past have been amazing and really important to share that story about hyperbaric, and now that we’re sharing the patient’s journey with hyperbaric, I think that’s really important, like it adds another layer of information to what people might experience if they go down the path of hyperbaric or if they’re considering it.

Bill Gasiamis 1:26:31
I love the opportunity to receive some support for them financially, because then that means that I can pay for my internet, I can pay for the editing, I can pay for hosting, I can pay for all those things. It’s just brilliant, and I’m grateful to them, and I am forever grateful that there is I do this all the time. Whenever I meet people who work in hospitals, who research, who create facilities or whatever I’m always like, ever, forever grateful to people who I’ve never met, who are doing so much work to help people that that they will never meet.

Bill Gasiamis 1:27:14
Do you know like it’s such an interesting concept to be supported by people who have done all this work before we got to become stroke survivors, so that we can have the benefit of recovery. So I’m grateful for that. I’m grateful for the opportunity to talk to you. Thanks, Bud. What a powerful conversation with Bud and his mantra, ants, don’t give up, and neither do I. It’s something I hope stays with you long after this episode ends. If Bud’s story resonated with you, I’d love to hear about it. Leave a comment on YouTube.

Bill Gasiamis 1:27:45
Send me a message or share this episode with someone who needs to hear it. Thank you again to Aviv clinics for sponsoring this episode and supporting the work we do here at Recovery After Stroke, their commitment to helping stroke survivors through hyperbaric oxygen therapy and comprehensive rehabilitation is making a real difference in people’s lives. If you want to dive deeper into stroke recovery, check out my book at recoveryafterstroke.com/book, and if you’d like to support this podcast, visit patreon.com/recoveryafterstroke.

Bill Gasiamis 1:28:15
Remember, you’re not alone in this recovery journey, whether you’re one week post stroke or 10 years out, there’s always hope, always progress to be made, and always a community here waiting to support you until next time, keep moving forward. I’m Bill Gasiamis, and this is the Recovery After Stroke Podcast.

Intro 1:28:36
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:29:06
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:29:31
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:29:55
Medical information changes constantly, while we aim to provide current quality information. Information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Bud Beucher: From Silent Survivor to Speaking His Truth Again appeared first on Recovery After Stroke.

When recovery gets complicated, honest stories help us navigate the grey. In this episode, John Cross shares his lived experience with Vivistim (paired VNS) and why a less-talked-about barrier, spasticity,  shaped what he could (and couldn’t) do in therapy.

John’s story starts with something ordinary: a bad bout of COVID and relentless coughing. Soon after, he collapsed while getting ready for bed. He later learned he’d likely had a carotid artery dissection, a tear in the artery that can lead to stroke. The swelling in his brain was so severe he needed a decompressive craniectomy. Over a year later, he underwent cranioplasty to “put his head back together.” In between were weeks of hospitals, rehab transfers, infections, and a heavy protective helmet that strained his neck.

Before stroke, John worked long days as a mechanical designer and application engineer problem-solving was his world. After stroke, everything changed: left-sided weakness, hypersensitivity, time distortion, and the emotional rollercoaster many survivors know well. Work disappeared after a corporate acquisition; insurance hurdles stacked up. Still, he kept searching for options: hyperbaric oxygen, medications, and eventually Vivistim.

This isn’t medical advice or a recommendation; it’s John’s account. Vivistim is a paired vagus nerve stimulation device: a small implant connected to the vagus nerve. The core idea is timing brief stimulation while you perform a task, to help the brain strengthen relevant neural pathways. John’s sessions included therapist activation and a magnet he could use himself. He didn’t always feel the “throat tickle” many describe. One day, he surprised himself by pinching a Post-it between thumb and finger, tiny, yes, but meaningful.

Here’s the critical insight from John’s story: spasticity can limit functional gains.

He describes his left arm as “locked up” so tight that even in zero-gravity setups, he felt like he was fighting a 15-pound weight. Without the ability to move the limb through useful ranges, pairing stimulation with specific movements was harder. He explored options like Botox (costly with his insurance) and became curious about longer-lasting approaches like cryo-neurolysis still hard to access in his region.

This doesn’t mean Vivistim can’t help someone with spasticity; it means spasticity may need its own plan so therapy, any therapy, has room to work.

John speaks candidly about fear, clinginess, and anger outbursts that felt out of character. He wished someone had prepared him for the emotional and cognitive shifts after discharge. In my experience, that gap is common. Hospital teams do an incredible job stabilizing people, but the “what now?” conversation often happens elsewhere, and often too late.

If that’s you: you’re not broken and you’re not alone. Emotional changes can be part of brain injury, not a moral failure. Support (counselling, peer groups, community) helps.

John’s engineering mindset both helped and hurt. He wanted to “solve” recovery quickly until he realized recovery demands experiments, patience, and feedback. He kept reaching out, kept learning, and kept trying. That’s hero work.

“Small wins count. Pinching a Post-it mattered because it meant my brain could still learn.”

—John Cross

• If spasticity is a roadblock, make it a priority topic with your clinicians. Strength, range, and fine control often need spasticity addressed first.
• Pair therapy with purpose. Whether you use a device or not, rehearsing goal-based movements with repetition is powerful.
• Track tiny wins. A weekly note of “what moved, what felt different” builds momentum.
• Get emotional support. Recovery is physical, mental, and emotional. Consider a psychologist or peer group.
• Be your own advocate. Ask questions, seek options, and document outcomes.

If you want a lived-experience roadmap for the long haul, my book might help:

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

And if this show supports you, consider joining the community:

Patreon.com/recoveryafterstroke

“Spasticity doesn’t mean progress is impossible. It means the plan needs adjusting.”

A thank you to Banksia Tech, distributors of the Hanson rehab glove by Syrebo, designed to help stroke survivors work on hand function at home, whether you’re early in recovery or years in. You’ll hear more during the episode.

John’s story isn’t about a miracle device. It’s about nuance: understanding that tools, timing, spasticity, emotions, and support all intertwine. Recovery isn’t linear, but small, honest wins stack up.

Disclaimer:

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

John shares his Vivistim experience and how spasticity shaped rehab, an honest look at small wins, setbacks, and hope in stroke recovery.

Highlights:

00:00 John Cross’s Background and Initial Stroke Experience
05:03 Jon Cross: The Night Everything Changed
16:48 Hospital Stay and Initial Diagnosis
18:27 Rehabilitation and Vagus Nerve Stimulation (VNS)
21:21 Jon Cross: Rewiring Recovery with Vivistim
35:29 Small Wins and Hope with the Vivistim Journey
49:23 Emotional and Psychological Impact
52:08 Adapting to Life Post-Stroke
54:42 Support Systems and Future Goals

Transcript:

Bill Gasiamis 0:00
Before we jump into today’s conversation, I want to take a moment to thank everyone who contributes to making this show possible. My Patreon supporters, YouTube commenters, Apple podcast reviewers, and everyone who’s brought my book The Unexpected Way That A Stroke Became The Best Thing That Happened, after doing this for more than 10 years on my own.

Bill Gasiamis 0:20
Your support now helps me create this content for other survivors who need hope, inspiration and real world insight into life after stroke and a special thank you to Banksia tech, proud distributors of the Hanson rehab glove by cerebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, and I’ll tell you more about them later in the episode. Today’s guest is John Cross, and he’s got a fascinating story to share. John experienced a carotid artery dissection that led to a major stroke and required a craniotomy.

Bill Gasiamis 0:58
He’s now living with a vivistam implant, a Vagus Nerve Stimulation device, and he talks candidly about what it’s really like, how it works during rehab, and the challenges that spasticity still brings. This is not medical advice or a product endorsement. It’s one man’s lived experience, and the reminder the recovery is rarely linear. Let’s dive in. John Cross. Welcome to the podcast. Thank you. Give me a bit of a rundown about what John Cross used to get up to before the stroke.

Jon Cross 1:34
I went to work every day, 1214, hours a day. Difficult work. Worked as much as I could. I enjoyed my job, and unfortunately, since the stroke work, decided they didn’t need me anymore, so I don’t do it anymore.

Bill Gasiamis 1:53
What kind of work did you do, John?

Jon Cross 1:57
Well, the bulk of it was a mechanical designer with AutoCAD. But they my title was, they called us in a sales Application Engineer, which I’ve always likened to Inside Sales Support. Really, they just like to put a big, fancy title on it.

Bill Gasiamis 2:16
Sales Support, yep.

Jon Cross 2:21
So I’ve for 30 years, I’ve designed clean rooms, like for pharmaceutical and high tech stuff.

Bill Gasiamis 2:32
Rooms where there’s no or small chance of cross contamination or something like that.

Jon Cross 2:39
Exactly.

Bill Gasiamis 2:42
And what about family life? What was that like? What was your situation?

Jon Cross 2:47
My family’s awesome. I wouldn’t be here without them. So I’ve got boy and a girl, both adults and my wonderful wife.

Bill Gasiamis 2:59
So 14 – 15, hours. Was that just part of what was required, what was necessary? Or is that because you loved job so much.

Jon Cross 3:09
A combination, and just couldn’t get it all done because I covered multiple bases where the bulk of my job was to put a, I don’t know if everybody understands what a submittal package is, but in a quick definition, it’s gather all the information from the customer and repackage it so that they understand that you know what they want, and this is what they were going to give.

Bill Gasiamis 3:39
And what did you do? Go ahead, and then you would.

Jon Cross 3:42
Sorry, no. Then I also designed the product too, so I covered multiple bases, but downtime, I kept the family cars going and just tinkered around the garage.

Bill Gasiamis 3:59
And what were you focused on, anything in particular back then? Was there anything that you were sort of straight, aiming towards or striving for.

Jon Cross 4:10
Just basic life stuff, you know, provide for the family? And unfortunately, that was right at the height of covid, and that’s what nailed me.

Bill Gasiamis 4:21
I see what was the sense that you had about your health? Did you feel like you were in a in a good way physically?

Jon Cross 4:29
Well, I knew I could be better, but it wasn’t terrible, like I could run up a flight of stairs and not be winded, but it couldn’t ride my bike up a hill and do it very well. So any other is room for improvement.

Bill Gasiamis 4:53
And how old were you about the time?

Jon Cross 4:55
My stroke was? I was 57.

Bill Gasiamis 5:03
And now, do you have a sense of what happened on the day? Do you have a recollection of how your day started and what evolved?

Jon Cross 5:14
My day was normal. I mean, I had covid, cold, really bad, and probably shouldn’t have gone to work, but I did, and just kept the old mask on and worked through my day. Got home, and normal for me was to come home exhausted and just crash on the couch until bedtime came. Thankfully, I woke up enough to get myself up to bed, and I went in to get ready for bed, and short story is I collapsed in the closet where I would get ready for bed. Thankfully, my wife heard me struggling to get back up, and she knew exactly what happened, and called the ambulance right away.

Bill Gasiamis 6:02
So what did you notice? What did you feel? How? How did things change for you? Before you knew there was something going on?

Jon Cross 6:10
Well, I was trying to get my pants off and get ready for bed, and I have a weird belt, and I couldn’t get the belt under undone enough because it was a ratchet type of belt, and I didn’t know it at time, but now it makes sense, my left hand quit working, and I couldn’t release the bill to get my pants off, so I leaned up against the wall, and before I knew it, I was on the floor.

Bill Gasiamis 6:40
Was there any other than having covid? Was there any other sort of suggestion, now, looking back, that there was something going wrong, that perhaps was a red flag.

Jon Cross 6:54
Well, now I know I explained to the doctor, you know, I had an earache and see my carotid already dissected. And he said the earache that I thought I was having was actually my carotid artery starting to go.

Bill Gasiamis 7:15
I’ve had some people who join me on the podcast with carotid artery dissections. Often there’s a trauma that’s related to it. They’ve been hit, or they were in a collision in a vehicle, or something happened that made their carotid artery dissect. Did you have anything like that? Any blunt force trauma or anything?

Jon Cross 7:35
No, the doctor said it was just my coughing so hard all the time.

Bill Gasiamis 7:40
Wow, from the covid, yep, wow. And does that, was it that hard the coughing? Was it that hard that you felt to it was worse than ever, or was it really, really difficult to cough? How was it that bad?

Jon Cross 8:00
Yeah, I just had a lot of stuff in my throat trying to cough it up, and the constant tickle, trying to get rid of the tickle, and it was, was there’s nothing now looking back this, I should have noticed that.

Bill Gasiamis 8:19
But no, you wouldn’t. How would you have possibly known that?

Jon Cross 8:24
Coughing? Yeah, not now. I would in the future.

Bill Gasiamis 8:29
Yeah, that’s another very strange way to discover that somebody has had a stroke. I’ve had all sorts of different ways. People have been bitten by a dog that caused a stroke. People have hit themselves in the neck and caused a stroke. People have sneezed and caused a stroke. All of those types of things are just so strange and bizarre that it could those seemingly benign events could lead to a stroke.

Jon Cross 8:59
Yeah, and I sneeze very hard. My family’s always proved me about it. And I told the doctor when I was in rehab, I’m afraid to sneeze. And she said, Don’t be afraid to sneeze. Like, well, Doc, you didn’t have a stroke.

Bill Gasiamis 9:17
Yeah, from coughing as well. And did they connect the dots quite quickly? Did they work it out early, or was that something that you kind of connected the dots on a little later?

Jon Cross 9:31
No, I think with their help, it all kind of came together once, you know, I was in the process of not dying, if you will. They had, I had a, I can’t remember his craniotomy or craniectomy, where they take your skull flap off, yep. Can’t keep them straight. Which one’s which, yep. So as recovering from that procedure, when the doctor was talking to me, I told him that I had covid weeks before, and he said “Oh, covid, stroke.” And then I described. Pain. Okay, that’s what happened. And described it because they had the typical questions, did you see a chiropractor? Nope.

Bill Gasiamis 10:12
Tell me about the craniotomy. Why did you have a craniotomy?

Jon Cross 10:18
Just to release the pressure? I actually told the my told my wife I was gonna die because my had so much pressure in my head.

Bill Gasiamis 10:32
And the pressure is that as a result of the dissection, and what happened to to your head after the dissection?

Jon Cross 10:41
Yeah, well, it was from the dissection, yes. And really, they didn’t do anything besides just stare at me and see if I died or not. They didn’t fix my artery. I guess I never talked to him, but they didn’t. I figured they put a stint in, and they didn’t, so they just let my body heal. And the taking the skull flap out gave my brain enough place to swell.

Bill Gasiamis 11:11
So how big? How big was the flap? Was it a large portion of the skull that was removed? Sometimes people have pretty much half their skull removed. What what forms like for you. We’ll be back with more of John’s story in just a moment, including what he’s been learning about patience, spasticity and tiny wins that make a difference. But first, a quick thank you to Banksia tech for supporting this episode. They’re the Australian distributors of the Hanson rehab glove by Cerebro, which helps stroke survivors regain hand function from home.

Bill Gasiamis 11:48
It’s a beautifully simple idea, assistive movement that helps the brain relearn. You can learn more and order directly through Banksia tech.com.au, the links will be in the description, and they also ship internationally. And if this show has helped you in your recovery, please consider supporting my mission over on patreon.com/recoveryafterstroke. Your support helps me keep producing these conversations and sharing hope with people who need it most.

Jon Cross 12:19
I’d say it was about the size of my hand. Okay, I have a picture of the prosthetic they put back in place because the actual piece of bone got infected. It couldn’t put it back in.

Bill Gasiamis 12:32
Okay, well, that’d be something that we I’d love to see personally, if you don’t mind sharing it. And then we could put it on the show notes, and people can have a look at it.

Jon Cross 12:42
I’ll shoot you an email of it. I have a funny story for that. Tell me so if you don’t mind taking the time for it, not at all. Part of what I did was design surgical suites. So the company that we were working for at the time, actually made the product that’s in my head. And my boss was joking with me, said, we’re going to imprint the company logo in your prosthetic. It’s like, yeah, I don’t care. Just give it for me.

Bill Gasiamis 13:16
That’s hilarious. You don’t do you have the company logo imprinted on it now.

Jon Cross 13:20
it’s not no and I’m grateful. Since they got rid of me, I wouldn’t want to be advertising that.

Bill Gasiamis 13:26
Fair enough. I couldn’t agree more. They got rid of you. They had to get rid of you because you were taking too long to get back to work. You weren’t being productive. Was it? What was the situation there? Do you feel? Well?

Jon Cross 13:45
Company I worked for had been sold to a big conglomeration just a couple months prior to my stroke, and I got back to work. I’m not exactly sure the timing, because time is not something I’ve been able to master very well now, and I was working from home quite well. There wasn’t a whole bunch of work to do. And anyway, my recovery slowed down. I hit the old plateau, if you will, and we had found clinical trials down in Houston.

Jon Cross 14:27
So I talked to my boss and said we wanted to move to Texas so I could get into the clinical trials. And I work remote. And he gave the Okay. And literally, two weeks before moving day, HR calls and said, we’ve been talking and we’re kind of slow, so we’re going to move you over to contract work, give you work as we need it. And few months went by and could never get any work out of them, so they just you. Kind of phased me out.

Bill Gasiamis 15:01
I say I understand. So on the on the day of the stroke, your wife realized there was something wrong, she called the hospital, or she called the ambulance, I imagine the paramedics.

Jon Cross 15:15
Yep, yeah.

Bill Gasiamis 15:17
Were you aware of that whole process? Very clearly, you do. You do remember it? Tell me. Take me through that day. What was it like when you realized that something serious was happening? How did you feel about it? And what were you thinking?

Jon Cross 15:30
Well, I didn’t put it together. I just knew I was on the floor and I couldn’t get up, and I’m laughing in my head. I was laughing at myself because at the time, my left hand was working enough that I could reach out, and there’s a laundry basket beside me, and I was trying to hook the laundry laundry basket with my fingers to help lift myself up. And I thought, that’s not going to work. Laundry baskets not heavy enough to pull on. So my wife heard me and came in, and I was just trying to wave her off so no, just call my son and help me get up.

Jon Cross 16:04
I’ll be fine, because I didn’t realize the headache at the time. But I know, you know I felt the ride down the stairs. You know they have the gurneys that walk down the stairs now, and I knew exactly what was going on. I had a pocket knife in my pocket at the time, and I knew I was going to hospital, so I was trying to get out of my pocket to give my wife and she could see what I was doing, and she said I already got it, hon. But later it dawned on me, I couldn’t move my right arm because the gurney had me strapped in.

Bill Gasiamis 16:48
To take you down the stairs to make sure you don’t fall out. Yep, yeah, and then you ended up in hospital. How long were you in hospital for?

Jon Cross 16:58
You know what I’m I actually asked my wife the other day how long, and the best we can figures, has maybe roughly five weeks before they sent me over to what they call a transitional care facility that was supposed to give me rehab, but they sent me over with a bladder infection, and my blood pressure went crazy every time I tried to rehab, so that didn’t go very smooth.

Bill Gasiamis 17:25
So as a result of that, you didn’t have rehab, or was it a different something else happening while you’re a rehab, a different medical issue.

Jon Cross 17:38
Eventually, I wound up back at the hospital at what they call inpatient rehab. And that was okay, and that lasted for, you know, about a month and a half, I suppose. And then I got back home, and we continued to wait for the swelling to go down in my head before they put my head back together.

Bill Gasiamis 18:06
And then they put your head back together, a little while later.

Jon Cross 18:10
So my stroke was in June. I got my head put back together. June of 22 this is where I have trouble with time, because I got my head put back together in September of 23rd.

Bill Gasiamis 18:27
Okay, so quite a while later, over a year.

Jon Cross 18:31
Yeah, which blows me away, because it felt like it was just a matter of a couple of months.

Bill Gasiamis 18:39
And in that time, are you wearing one of those protective helmets or hats or something over your head to ensure your brand is kept safe?

Jon Cross 18:47
Did the big, heavy monstrosity make it sweat all the time and hurt my neck because it was so heavy.

Bill Gasiamis 18:57
And in that time, are you? Are you feeling okay with everything, or are you experiencing deficits and you have challenges to deal with? So it sounds like your left hand doesn’t work. What about your left leg?

Jon Cross 19:12
Well, I eventually managed to walk after I got home, and my wife helped me, and I got walking figured out, but I still have to wear the AFO never really got the arm to work, but deficit wise, it was the left arm, left leg and hypersensitivity were boy when they Were trying to wake me up from the initial craniotomy, they did the finger pinch in the cuticle, and it literally felt like I was being electrocuted.

Bill Gasiamis 19:54
Yeah, hypersensitivity on their left side.

Jon Cross 19:58
Yeah. Did not like that, it whatsoever.

Bill Gasiamis 20:01
Yeah, and then the rest of your skin as well. Is it just your fingers, or is it the rest of your skin as well? The heart, the entire left side,

Jon Cross 20:12
It’s a lot of the skin, not everything, but I still have some sensation issues, but I can tell hot water that’s easy.

Bill Gasiamis 20:29
And as far as the arm work movement goes, does the arm move up and down, or is the arm also not moving too much?

Jon Cross 20:39
I’m basically, I don’t move from the elbow down. I got a little bit of shoulder movement, and I can move my fingers just a slight bit, not as much as my right side at all, but I got some movement into the thumb now.

Bill Gasiamis 20:54
So you’re still seeing a slight improvement over the last period of time.

Jon Cross 21:00
Yeah, actually, this last year, I got the Vivistim implant, so that might be helping some, but gotta get back. I’m gonna get into physical therapy again here in another couple of weeks and get some use of the Vivistim unit.

Bill Gasiamis 21:21
Tell me about the Vivistim unit, because there isn’t a lot of people who have been able to access it, A and B. Provide feedback to other people about what it’s like. There seems to be a very a bit of a black hole of information around it. What, what was it like for you to get the device installed. How do you go about that? How easy or hard was that?

Jon Cross 21:48
Well past the insurance it was a piece of cake that unfortunately, I have a shunt because of the excess pressure in my head. So I’ve got a drain line on the left side, where they normally put the biggest immunity on the left side. So I found a doctor that could put it on the right side, and then he tunneled across my neck to put the coil on the left vagus nerve. But if I could let anybody know, make sure you get your spasticity taken care of, because that was a big limiter on me and getting my arm working.

Bill Gasiamis 22:27
What’s the Vivistim meant to do? How is it supposed to help?

Jon Cross 22:32
Well, I like to say it’s kind of a slap in your in the back of the head, saying, Get your butt back to work so it stimulates the brain to generate new neural connections, and you’re supposed to stimulate it while you’re doing a task. So the brain makes that connection. It’s like, we do this. We make that connection.

Bill Gasiamis 22:58
And you stimulate it. How? How does the stim the Vivistem do that? Do you know?

Jon Cross 23:04
Well, the therapists have a way to do it with their computer and a remote, and then I have a magnet that I can turn it on with. Okay?

Bill Gasiamis 23:13
And what does it feel like when you turn it on? How does it feel?

Jon Cross 23:17
Well, they say I should feel a tickle in your back, your throat like you need to cough, but I’ve never felt anything. Nobody said, why? I don’t just that’s just the way some people are.

Bill Gasiamis 23:33
So you activate it, and then while you’ve activated it, you’re supposed to be doing some kind of a physical activity, an exercise, a movement, a rehabilitation type of correct and then, does it? Does it generate electrical pulses, stimulation? What kind of feedback does it give the vagus nerve?

Jon Cross 24:00
Well, if I remember right, it’s just, you know, they’re talking milliamps of current. It’s like just a very, very short duration of time, like every five seconds, and only lasts for about 30 minutes.

Bill Gasiamis 24:21
And then you have to switch it off. Or does it have a set amount of time that it works for?

Jon Cross 24:29
It has a set amount of time?

Bill Gasiamis 24:33
Do you know why that is?

Jon Cross 24:36
That’s just what they determined that is best for rehab. So you’re supposed to have, and I had six weeks of therapy right afterwards, so you’re supposed to have, you know that how they say you have X number of movements to make to ingrain stuff back into your brain.

Jon Cross 24:59
So you’re. Trying to amplify that time. Repetitions is word I was looking for.

Bill Gasiamis 25:07
Okay, and how big is the device?

Jon Cross 25:12
It’s a large matchbox, basically.

Bill Gasiamis 25:18
And does it sit under your under your skin, somewhere?

Jon Cross 25:21
Yeah. How long you can see I got a small, low scar right there, yep, but I can definitely feel it. It’s right there.

Bill Gasiamis 25:34
And then, does it have a battery? How long does it last? Do you know.

Jon Cross 25:38
They say it lasts up to seven years.

Bill Gasiamis 25:42
Okay, so you got through all of the drama with the insurance company? Was that quite a drama?

Jon Cross 25:52
I’d have to look back at records, but they said when I went into the doctor, okay, the lady that does all the paper potion said it can be like, three to six months to get the approval. And Ryan came back in, gosh, I forget it was like, oh boy. I maybe 30 weeks, I think so, substantially shorter than what they had experienced with the insurance companies.

Bill Gasiamis 26:31
Okay, and now that it’s in your The idea is that you go and get more rehabilitation, or do you also use it and activate it at home? Is that whole idea that you can switch it on and off whenever you feel like, whenever you’re being more active, or whether you’re doing a home rehab?

Jon Cross 26:55
Well, I had one therapist say, anytime I’m like, even going out to the car or going to the store or whatever, turn it on. But I need to clarify that, because that’s not using, you know, my bad side. I’m not doing anything specific to the arm that’s affected. So I want to clarify that. But the idea is that I do therapy, either with a therapist, or I do at home too, anytime, like showering and stuff, I can turn it on.

Bill Gasiamis 27:34
And the Vivistim basically sits there. It doesn’t pulse or doesn’t do anything. When it’s switched off, you don’t feel other than feeling it under your skin. You don’t hear it. It doesn’t make a noise or anything like that, nothing.

Jon Cross 27:51
Hey, the only time a guy notices when the cat walks across me, hell just because she steps on it feels like a bruise.

Bill Gasiamis 28:03
Okay, how long have you had it installed?

Jon Cross 28:08
I shoot. I thought about this yesterday. I should have nailed it down. But April of 25 okay?

Bill Gasiamis 28:18
April, May, June, July, August. So it’s been in there for about four months. Yep, okay. And have you had a lot of time activating it, switching it on and off? Have you been able to utilize it?

Jon Cross 28:36
Yeah, definitely. And I know it’s been a couple of months ago now, but I was able to not going to seem like a big deal because I have a little bit of movement in my other in my bad hand, like I was able to grasp a piece of like a Post It note in between my thumb and index finger with the bad end. So that was encouraging.

Bill Gasiamis 29:07
The vivistim organization, the people who create the product, supply the product, and then your doctors are there follow ups. Do they communicate with you? Do they see how you’re going? Do they check in with you?

Jon Cross 29:24
I had to have a follow up visit. Boy, I think it was a month after it actually got implanted, just to make sure that things look good and they could take the band aids off and all that.

Bill Gasiamis 29:38
And that was about it.

Jon Cross 29:41
That was about it. I mean, the therapist check and make sure that everything looks good. When they activate it, they can actually do readings and see that the connections are all there.

Bill Gasiamis 29:56
So there is a way to connect into it, get a read. An I imagine, on a computer, or some sort of an app or something.

Jon Cross 30:03
Yep, exactly.

Bill Gasiamis 30:06
So they have some data. I’m sorry, I have some data that they can look at.

Jon Cross 30:13
Yeah, I was hoping that they it recorded and they could look back at the recordings, but it doesn’t do that. So it’s just live data that they see.

Bill Gasiamis 30:25
I see, and then first you have to get the Vivistim. You have to get the insurer to approve it. Then it has to get installed. Then I imagine you have to find a therapist that is that knows about the technology and knows how to get the most of it, I would, I would imagine, is that the case, or is that not happening?

Jon Cross 30:55
Well, I have a business in rep, rep, excuse me, in the area, and she’s working on getting training into the local hospital here. So I have offered to be the guinea pig for the hospital to get trained up on so we’ll see if they take me up on it.

Bill Gasiamis 31:14
Yeah, fair enough. How did you find out about the Vivistim.

Jon Cross 31:20
I found out about this 10 years ago, when we were still, you know, I still in my initial rehab, because ever since I got home, that’s all I’ve done is research how I can get better. So I’ve done hyperbaric I even tried ketamine, and that was not good.

Bill Gasiamis 31:43
Okay, tell me about the ketamine experience. Why did you try that?

Jon Cross 31:49
Well, I understood, you know, the brain produces that BDNF protein to help reduce, rejuvenate things, and that’s what I focus on a lot is brain derived.

Bill Gasiamis 32:03
Yeah, brain derived neurotropic factor?

Jon Cross 32:06
Yep, so I thought, What the heck? Let’s go ahead and try ketamine. And this is a guy who didn’t do anything in high school, right? So thankfully, my wife stayed with me, because, as a I’ll say it was a bad trip, because I don’t know what a good trip would be.

Bill Gasiamis 32:24
Yeah. Okay, so your first experience with substances that you most of the time should be avoiding was after a stroke, correct? Well, the about that’s probably about it. We’re not gonna talk about it any more than that. We’ll just leave it at that. It’s not a good thing. You didn’t, you don’t you don’t suggest people should go down that path, I imagine.

Jon Cross 32:51
Well, it depends on your personality and your ability to handle being wigged out. But there’s a new Algernon is the company they are working on a product called a DMT that is a synthetic version of something your body can produce, which is a natural hallucinogen that can achieve similar results, ketamine, without getting you so messed up. I have an appointment with my new doctor just in another week or so. Want to talk to him about the possibility of being able to use it give that a show up.

Bill Gasiamis 33:37
I see understand. So the idea is to activate more of the brain. Isn’t that the idea with ketamine and psycho psychoactive drugs?

Jon Cross 33:51
Yes, good way to put it.

Bill Gasiamis 33:54
And then hopefully you activate parts of the brain that perhaps may have been dormant or support the ones that are dormant to come online, and then, as a result, potentially gain some function.

Jon Cross 34:09
Yeah, even if it’s as much as little, as getting the Good half to take over.

Bill Gasiamis 34:16
Yeah, understood. So you’re you your What were we talking about before? Before we spoke about ketamine.

Jon Cross 34:28
You were on the river STEM.

Bill Gasiamis 34:30
We were talking about vivistim, people are getting trained up in your local area by the river stim. Rep, to support hospitals. I imagine doctors there to work with the product, to make the most of the product. You had it installed by the team that installed it. Are they? Vivistim, people? Are they doctors? Who are they? Who installs it?

Jon Cross 35:01
Just a neurosurgeon did it, and he’s trained up by vivistim. So once you have it installed, you don’t have to necessarily be at a clinic that knows about vivistim, because you can activate it yourself any physical therapy is good for you. Just get your repetitions in. Just need to do them the right way.

Bill Gasiamis 35:29
And is the idea to have it in stored for the entire seven years, permanently after that?

Jon Cross 35:34
Or, you know, I never thought to ask about removal. If that’s an option or not, but as far as I know, it just stays there. It’s kind of like a pacemaker, but it’s a pacemaker for your brain.

Bill Gasiamis 35:50
Understood. Okay, wow. What an interesting experience that is to go through all of that. Hopefully it gets some it gets some stuff happening on your arm and on your left side there, and improves things for you. Have you, have you had some changes that you associate to the Vivistim that you can say, perhaps it’s as a result of the device.

Jon Cross 36:18
Now, not necessarily, but grabbing that post it note, had never been able to do such a thing. But like I said, I have a little bit of movement like this with the bad hand, so I just when she gave it to me, I tried harder to actually grab a hold of it. So might have just been the encouragement. Let’s go ahead and try this now.

Bill Gasiamis 36:41
Yeah.

Jon Cross 36:44
The big thing I want to be able to do is something silly is just scratch my nose.

Bill Gasiamis 36:50
With your other hand.

Jon Cross 36:52
Yeah, because right now I have to pick my hand up if I want to do anything.

Bill Gasiamis 36:57
Yeah. Understood. Well, I hope you get there, mate, I really, really hope you do.

Jon Cross 37:04
I appreciate that, and I’ll give you any positive updates. But making the move back to Oregon has been great because I got connected with a lot of people here. That’s encouraging.

Bill Gasiamis 37:20
You seem very mild minute.

Jon Cross 37:24
Thanks. But going from what I considered marginal rehab initially, to down to Texas for the clinical trials, and then, basically, the day we got moved into the house, I called to tell the university I was there, and then they did the evaluation over the phone. Kind of had the shunt and I got disqualified. So that was a big letdown. Been a lot of ups and downs.

Jon Cross 37:58
That’s one big thing, is dealing with ups and downs, you know, obviously there’s emotional roller coaster anyway, but then throw in these hurdles you didn’t think about, you know, your job letting you go, and losing your insurance and the ability to get back to hospitals and stuff is it’s a big, you know, punch in the gut.

Bill Gasiamis 38:19
Yeah, that’s what I was sort of suggest going to ask you about. You seem very mild mannered, and you don’t seem very easily rattled. However, you’re going through all the emotional turmoil, the physical turmoil, I imagine there’s some mental challenge there as well. You know, trying to get wrap, wrap your head, around all of the stuff that you have to deal with all of a sudden that you’ve never had to deal with before.

Bill Gasiamis 38:47
What’s the hardest part for you of that? Is it something specific that you you hadn’t had to deal with before? And I’m not talking about the physical condition, but is there something specific that came up that was the most challenging for you to grapple with.

Jon Cross 39:05
Well, the biggest thing, I think, was emotionally, you know, I always felt my poor wife has just been through it, you know, because I was basically a little kid again, as far as being clingy and needy. I didn’t want to be left alone.

Bill Gasiamis 39:26
Through fear?

Jon Cross 39:28
Yeah.

Bill Gasiamis 39:31
That something might happen again.

Jon Cross 39:35
Well, I’ve learned to understand that it’s, you know, not real. It’s just my brain, you know, since there’s so much of it missing and it’s just messing with my ability to reason.

Bill Gasiamis 39:51
Okay, so that’s a really great distinction. So it’s, it’s beyond just irrational fear or even rational fear. It’s beyond. I had a stroke. I might have another one. I need somebody around with me all the time. It’s also, you understand that it’s also the injury actually in your brain that perhaps could be running these types of feelings.

Jon Cross 40:17
Yes, definitely. And I wish that they offered, you know, I mean, usually people don’t really like the idea of the doctor offering you to talk to a psychologist, but that would have been great to have somebody specific that could have helped you understand that this is going to happen be ready for it.

Bill Gasiamis 40:39
Yeah, there isn’t much conversation after that initial intervention to make people feel ready to go home, so to speak, or not not feel ready to just send people home. There is no you had a stroke. What now? Conversation? Ever anywhere that I’ve heard of, nobody that I’ve spoken to has ever said that there was a conversation that gave them some understanding of what to expect.

Bill Gasiamis 41:11
And I find that really fascinating and challenging. And at the same time, I think it’s kind of what we do here on the podcast, is we, I think we feel that gap. People seem to tune in to get a handle on how other people are going about their recovery, and what kind of and how they and how they’re forging, you know, their path forward.

Jon Cross 41:38
Yeah, that’s one of my, you know, hopes that I can help people understand better, maybe even if it’s the doctors. Hey, you know, the patients need this kind of support afterwards. But you know, I’m not medically educated, so you’re going to listen to me?

Bill Gasiamis 42:03
Yeah, I’m not sure that there’s much. I’m not sure that there is a lot of conversation between patients and their doctors. The doctors tend to need to move patients on. They tend to get you to a state where they can send you off to make the space available for somebody else, rather than have you come back provide them with feedback, perhaps on your experience, their customer service, the tools that they offered You, the support that they gave you.

Jon Cross 42:42
Sorry, I’m trying to ask my wife to move out because the bag is noisy, but yeah, I think that’s I really want to try to help people in the future learn to cope with the stuff I got connected with a Stroke Awareness Oregon, and lady that’s headed and out of so she, she follows you a lot. Hopefully I can get myself better enough that I can go in and offer some assistance in there.

Bill Gasiamis 43:17
Yeah, it is the communities. The one of the best things that I find is the amount of people that connect, find each other through the podcast, and help each other to solve problems, big or small, I found that that’s probably the most rewarding part of doing this podcast, which I didn’t expect. I didn’t know that that was going to be a thing. And the conversation that you and I just had about Vivistim, that is one that I’ve been trying to do for a long time.

Bill Gasiamis 43:52
I haven’t had any luck finding people yet, drug survivors, sending me information and saying, do you know about the Vivisteam? Have you seen anyone who used it?

Jon Cross 44:06
I like to say, I’m an open book. If somebody’s got questions, send them on and I’ll do what I can to answer. But I have to say, give your spasticity taken care of before you go through the effort of getting the unit, because that was a big limiter for me.

Bill Gasiamis 44:22
How so tell me about that?

Jon Cross 44:25
Well, I even just moving my arm. It’s so locked up I can’t physically move it with the other arm, so there’s no way I can overcome my own muscles with the unit turned on. You know, they try to put you into a zero gravity position to move your limb. I feel like I’m fighting, you know, a 15 pound weight all the time when I move my arm.

Bill Gasiamis 44:55
So the spasticity kind of is, is a hurdle to what. Getting the most out of the Vivistim.

Jon Cross 45:04
Yeah, unfortunately, Botox, with the insurance that I had, was just out of sight for us.

Bill Gasiamis 45:15
As far as the cost, covering the cost and having the injections paid, covered, yeah, right, yep. And then there’s another, there’s another procedure that people are talking about at the moment, which I spoke about on the podcast a little while ago in a short one of my short videos, which was about a cryoneurolysis, or cryonerolysis.

Jon Cross 45:42
Yes. I can’t remember his name. Is it William, I think, but I have emailed with him and was trying to find a location that I could get to to get that but unfortunately, there’s no crowd trained doctors on the West Coast.

Bill Gasiamis 45:58
I think they’re running courses that they’re trying to recruit people to go and attend the courses to learn how to administer the procedure. And the doctor’s name was Paul Winston, okay.

Jon Cross 46:14
Well, thank you, Paula, and I’ve got an email from him. I gotta look that up and try to get my new doctors here to consider it.

Bill Gasiamis 46:22
Yeah, so hopefully, if and what they say about cry neurolysis Is that what you get is a long term positive result from it, unlike Botox, which is quite short term, there seems to be, for some people, quite a long term improvement in the way that the specificity feels, and it could last for some people up to a year or more. Which is I think Botox doesn’t have that type of useful time. Amount of time?

Jon Cross 47:09
No, it takes quite a while for it to actually start doing what it’s going to do. And then, excuse me, it does wear off afterwards.

Bill Gasiamis 47:21
So how, how did you go with the psychology part of this recovery? You wished you could have had somebody support you or offer you that type of service. Did you take up that later on?

Jon Cross 47:42
Well, just after understanding it, I just learned to cope with it. I didn’t really get to I tried to get in to see a neuropsychologist, and my insurance didn’t cover it, so never got there.

Bill Gasiamis 48:01
The psychologist and neuropsychologist is slightly different, though, neuropsych will determine your deficits as a result of the injury, and kind of map it to your brain and tell you that this is where your deficits are, and that kind of gives people a bit of an understanding of where they can focus their rehabilitation effort, whereas a psychologist is going to talk to you about the emotional side or or the cognitive side of the recovery.

Jon Cross 48:34
I assumed that it was just going to be the cognitive side to let me understand what I was up to for a challenge. Thankfully, my daughter had a little bit of a medical schooling, so she kind of knew what was I was in for, and she and my my wife, talked and clued me into stuff, so I didn’t like have fits of rage, but there was times where I just didn’t control myself, like I should have things angered me easily. And looking back, I feel really bad about some of the stuff that I had done. Just losing my temper.

Bill Gasiamis 49:18
Out of character.

Jon Cross 49:21
Yeah.

Bill Gasiamis 49:23
Pretty common. I hear that I was the same. I misbehaved a number of times, apologized later, but behaved in a way that I never behaved before, really aggressively after what I’d been through and the frustrations that I was experiencing. My wife was the person who bore the brunt of that. Who was the person who bore the brunt of your outbursts?

Jon Cross 49:50
Yeah, my wife has been just heaven sent. I can’t say much more than that. She’s. She’s just been a peach, if you will. I wouldn’t be here still. She’s held the family together for three years now, done an outstanding job.

Bill Gasiamis 50:12
So looking back, how have you changed? Obviously, not just physically and emotionally and mentally. Clearly, the strokes had an impact on on you. But how else have you changed? What? Where do you see some changes?

Jon Cross 50:30
Boy, that’s a big question. Yeah, no, still very anxious to, you know, get back to life anytime I reach out for help, it’s like I’m just trying to get back to life. Because, I mean, I took care of everything, like I was telling somebody in one of the emails I sent, you know, my poor wife has to do everything, you know, leaky faucet, taking the garbage out, everything that used to be what I did, and I enjoyed fixing things and taking care of stuff, and now I can’t do any of it.

Bill Gasiamis 51:17
And other than the things I’m sorry and other other than the things that you can’t do, what have you found out about yourself? What have you learned about yourself that you didn’t know?

Jon Cross 51:31
Yeah, well, I’m nowhere near as strong as I had hoped I would be.

Bill Gasiamis 51:39
Strong, how?

Jon Cross 51:41
Emotionally.

Bill Gasiamis 51:51
Pretty normal to have an emotional challenge after stroke, most people will Go there, and it’s hard for everybody, and getting back from there just takes a little bit of time and a lot of work.

Jon Cross 52:08
Yeah, it does, but part of the challenge is knowing what and how to work on something, be it physically or emotionally. Like, how do I go about this, and I’m just grateful that they don’t the Old School ways of tie the good hand behind your back and say, Okay, now figure it out, because I would be lost.

Bill Gasiamis 52:34
The tough love way.

Jon Cross 52:36
Yeah. So I have a couple ideas, I will probably email you. Don’t need to waste time explaining them on the podcast, so you don’t mind, I’ll put it in the email when I send the picture of my prosthetic to you.

Bill Gasiamis 52:52
Yeah, fair enough, that’ll be fine. I’ll be happy to receive your email. All right. Thanks, Bill, you’re You’re welcome. Are you done now? Are you tired? How did we get to this stage?

Jon Cross 53:12
I’m doing good. I mean, I just want to answer any questions that you got anything else ask specific for you?

Bill Gasiamis 53:20
Okay, so I have a few more questions, so we’ll wrap it up in a little bit. But I wasn’t trying to wind you up or get you off or anything. Okay, so your engineering background, is it helpful in this situation, because engineering is about solving problems CAD and all of that is about visualizing something and finding where parts fit and how things can improve. Or if you do this, or you know what kind of result you’ll have, have you applied any of those skills into your recovery?

Jon Cross 54:06
Well, I’ve tried, but it’s also a detriment too, because you think you can get something figured out, but then there really isn’t a way. If you can’t move your dang hand, I can’t do that. It’s like something simple, like washing a pan out. It’s like, I need two hands to do it. So you’re right. It is, you know, with that background, you kind of have a different aspect of stuff. But it’s also like, I should be able to figure this out, but I can’t.

Bill Gasiamis 54:38
You can’t yet.

Jon Cross 54:42
Well, just because, you know, the solution I have in my head isn’t possible right now because I don’t have use of that hand.

Bill Gasiamis 54:50
So it sounds like you have to get creative, because a lot of people have been through what you’ve been through, and are getting about their kitchen with one hand. Right? Yeah. There’d be devices that support people getting around the kitchen with one hand now, perhaps not to wash a pan. Maybe you can outsource that one, but there might be other devices that have already been developed that would support somebody being able to, for instance, chop, chop an onion.

Jon Cross 55:20
Yeah. So one thing that was, I was very happy when my daughter told me she did this. She would challenge me with something, and I’d look at it initially and think, I can’t do that. And she’s no dad. I tried it with one hand, and I can do it. So you can do it too. So I like that a lot when you know, your support has already tried to do something that they want you to try to do.

Bill Gasiamis 55:46
Yeah, so do you think it’s just a mindset thing, that perhaps there needs to be a little more of a shift in your mindset, in how to look at a problem differently?

Jon Cross 55:58
Yeah, Instead of instantly thinking, Well, no, I would normally do that with my bad hand, but now I can’t, so I’m not going to try. So that’s a mindset.

Bill Gasiamis 56:11
So I’m not going to try. That’s probably the worst thing that somebody can do, is not fail. Yep. Because at least when you fail, you find a way, if you might learn something about why you failed or how you can perhaps decrease your chances of failing next time. Definitely if you could share one lesson from your journey so far, there’d be people watching just newly diagnosed going through the early phase of their stroke. Is this? Is there any wisdom at this stage of your recovery that you might impart on other viewers or listeners.

Jon Cross 57:02
Well, thing I’d like to say is, you know, just do your own research. And unfortunately, you got to be your own advocate. And, you know, work with it. Try to find doctors that’ll work with you. Be patient too. I found that I have have a lot of problems with patients like, Okay, I’ve already got this plan set forth, and I try to accelerate it. And it doesn’t help to try to accelerate something that’s already planned. They want to happen now.

Bill Gasiamis 57:38
And is that because that’s just the way things happened. In the past, you were able to take action and get things done when you needed to get them done, and you didn’t have to wait.

Jon Cross 57:49
I suppose that’s some of it. But you know, having, you know, such a deficit and trying to make progress, and you feel like you run into a wall every time you turn around. You want to push to get things moving further faster?

Bill Gasiamis 58:05
Yeah, that makes sense. I completely understand that. I’m not sure how that changes or shifts, but definitely trying and failing will move you closer to your goal quicker, even though it feels like a roadblock, it’s perhaps giving you some data that you can use in your own way to get to the next phase.

Jon Cross 58:37
Yeah, I think you do have to always keep trying and learn from one another for real.

Bill Gasiamis 58:48
Yeah, well, John, I really appreciate you reaching out and joining me on the podcast. Thank you so much for your time.

Jon Cross 58:55
Sure, I appreciate you giving the time.

Bill Gasiamis 58:59
And I look forward to receiving your correspondence.

Jon Cross 59:04
Okay, and I’ll update you when I get some progress going. But you know what’s up.

Bill Gasiamis 59:09
Yeah, I’d love to know how the vivistim continues to support you and help you out, and whether you can find some further support for the spasticity.

Jon Cross 59:25
Yeah, time will tell you gotta get in and have the doctor start requesting it so I can see if I can make it happen.

Bill Gasiamis 59:36
Yeah, understood. Well, thanks again, John. Really appreciate it. That was John Cross sharing his journey with vivistim and some of the emotional and physical hurdles that come with post stroke recovery. What really stood out for me in this conversation was John’s honesty, especially about how spasticity became a bigger challenge than he expected, and how small. All wins, like pinching a post at night reminded him that progress is still possible. Remember, every story shared here is for learning, not medical advice.

Bill Gasiamis 1:00:09
Always speak to your own healthcare team before making changes. If you’d like to support that. Show you can do that at patreon.com/recoveryafterstroke, and remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available at recoveryafterstroke.com/book. Thank you again to Banksia tech for making this episode possible.

Bill Gasiamis 1:00:32
They’re helping stroke survivors all over the world access innovative tools like the Hanson rehab club by Cerebro and everyone listening, remember you’re not alone in this recovery journey. I’m Bill Gasiamis, and I’ll catch you in the next episode.

Intro 1:00:47
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The post Vivistim: One Stroke Survivor’s Experience, And Why Spasticity Matters – John Cross appeared first on Recovery After Stroke.

When a stroke changes the way your hand works, it’s not just about movement — it’s about your independence. Hand therapy after stroke isn’t a quick fix. It’s a journey of patience, persistence, and celebrating the little wins that add up to life-changing progress.

In this episode of the Recovery After Stroke podcast, I sat down with occupational therapist Effie Sibson, co-founder of Banksia Tech, to explore what hand therapy really looks like, why the word “plateau” doesn’t belong in recovery, and how survivors can keep making progress even years down the track.

Hand therapy is more than just exercises for your fingers and wrist. Effie explains that occupational therapy looks at how the hand fits into everyday life:

While physiotherapy often focuses on muscles, balance, and walking, occupational therapy connects those improvements to real-world tasks. Hand therapy after stroke bridges the gap between physical recovery and meaningful independence.

Effie reminds us that recovery isn’t only about regaining what was lost — sometimes it’s about learning new ways to do things. That’s where neuroplasticity comes in.

Neuroplasticity is the brain’s ability to rewire itself. The more you use your affected hand, the stronger those pathways become. But the opposite is also true. If you avoid using your weaker hand and rely only on your stronger one, your brain actually shrinks its “map” for that affected hand. This is called learned non-use or maladaptive plasticity.

That’s why even tiny, daily attempts with your weaker hand are so important. As Effie puts it: “Recovery is not something that happens to you. Recovery is something you do for yourself.”

“Every little attempt you make with your affected hand keeps that part of your brain alive and engaged.” – Effie Sibson

Many survivors hear the word “plateau” — often from an insurance company or during discharge from hospital. It’s a word that can steal hope. Effie doesn’t use it at all in her clinic.

The truth? Recovery never stops. Progress may slow, but it doesn’t disappear. If things feel flat, it’s often a sign to change the approach, not give up. As one of Effie’s clients wisely said: “Don’t change the goal — change the plan.”

Hand therapy is a long road, and it always feels hard. That’s by design — challenge drives neuroplasticity. But that doesn’t mean progress isn’t happening.

Effie encourages survivors to celebrate small wins:

These milestones matter because your brain thrives on positive reinforcement. Recording short videos of your progress can show just how far you’ve come — even when it feels slow day to day.

Recovery isn’t just physical; it’s emotional and relational. Family and friends play a crucial role by:

As Effie explains, sometimes the hardest thing is watching a loved one struggle. But allowing survivors to attempt tasks — even imperfectly — builds long-term independence.

Perfectionism can trip up recovery. Survivors who push too hard for 100% performance often burn out. Effie’s advice? Aim for progress, not perfection.

Sometimes 85% is good enough if it means you can participate in the activity that matters to you. Hand therapy isn’t about flawless movement — it’s about reclaiming your life.

One of the challenges survivors face is access. Traveling hours to therapy can be exhausting and expensive. That’s why Effie and her team at Banksia Tech brought the Syrebo Hanson rehab glove to Australia.

This lightweight robotic glove helps stroke survivors practice hand movements at home, every day, without waiting for an appointment. It’s NDIS fundable in Australia, and international orders are available too.

It’s the kind of device I wish I’d had in my early recovery — something simple, affordable, and effective to help me keep practicing daily.

Hand therapy after stroke is a journey of persistence, adaptation, and hope. Whether you’re days or decades into recovery, every effort counts. As Effie Sibson says, “A little bit every day — and celebrate the small wins.”

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.

Occupational therapist Effie Sibson shares why hand therapy is about small daily wins, not plateaus, and how survivors can keep moving forward.

Banksia Tech

Transcript Will Be Available Soon…

The post Effie Sibson on Hand Therapy, Recovery, and Hope After Stroke appeared first on Recovery After Stroke.

When you hear the phrase after stroke recovery, what comes to mind? For some, it means the early days in hospital learning to walk again. For others, it’s the first year at home trying to rebuild daily routines. But for Terry Gilstead, recovery didn’t end after a year, five years, or even ten. More than three decades later, she’s still finding new ways to heal, adapt, and live with strength.

Terry’s story reminds us that recovery is not a finish line. It’s a lifelong journey of resilience, patience, and unexpected transformation.

At just 37 years old, Terry was six and a half months pregnant when she suffered a stroke caused by antiphospholipid syndrome — a condition that thickens the blood. She had been active, full of energy, and working toward her master’s degree in administration. Then, everything changed.

Her stroke left her with paralysis on her right side and aphasia, making it nearly impossible to speak. In the midst of ICU stays, near-death experiences, and even early labor scares, she had to navigate the unthinkable — protecting her unborn son while fighting for her own life.

Despite the odds, Terry delivered a healthy baby boy in December 1991. But she returned to rehab without him, facing weeks of separation, pain, and the reality of life with new deficits.

Like many survivors, Terry battled depression. She felt trapped in a body that no longer worked as before. Speech was painfully slow, and movement on her right side seemed impossible.

She even admitted to God that she was ready to die. Yet, her family — her husband, daughters, and newborn son — became powerful reasons to keep going.

“Every time someone told me I couldn’t do something, I said, ‘Watch me.’”

This defiant spirit became a turning point.

Just eight months after her stroke, Terry returned to her classroom. She relied on scripts, lesson notes, and creative teaching strategies. She integrated her rehab into her teaching — having students move their arms, practice cross-body activities, and engage with material in new ways.

Though her voice often gave out by midday, her persistence inspired both students and colleagues. She proved that after stroke recovery isn’t just about regaining what you lost — it’s about creating new ways to thrive.

Before her stroke, Terry described herself as spiritual — more Zen than religious, open to many traditions. Afterward, she struggled with anger toward God. For seven years, she couldn’t reconcile why she had survived only to live with deficits.

But with time, her perspective shifted. Recovery softened her outlook, allowing her to reconnect with faith and gratitude. That spiritual healing became as important as the physical therapy.

Today, more than 32 years later, Terry is still in recovery. Balance issues have returned as she nears 70, but instead of giving up, she goes back to rehab. She uses exercise balls, resistance bands, and stair training to stay strong.

Her story underscores a vital truth: recovery doesn’t end. Progress is possible at every stage — even decades later.

“Don’t ever think you won’t get something back. Recovery continues — you just have to find your way to it.” – Terry Gilstead

After stroke recovery isn’t a destination. It’s a lifelong process of growth, healing, and adaptation. Terry Gilstead’s story shows us that no matter how much time has passed, there’s always room for progress.

If you’re on this journey, remember: you’re not alone, and it’s never too late to reclaim something new.

For more stories of resilience, check out my book The Unexpected Way That a Stroke Became the Best Thing That Happened.

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 stroke recovery never really ends. Terry Gilstead’s journey proves that patience and resilience can transform life after a stroke.

Support The Recovery After Stroke Podcast on Patreon

Highlights:

00:00 Terri Gilstad’s Introduction and Background
04:44 Out-of-Body to 27 Years On: Terri’s Long Stroke Journey
10:38 Near-Death: Terri’s ICU Revelation
18:40 The Stroke and Initial Hospitalization
22:39 Returning to Normalcy and Teaching
38:50 Long-Term Recovery and Personal Growth
44:36 Impact and Purpose of Sharing Her Story

Transcript:

Bill Gasiamis 0:00
Hi, it’s Bill from Recovery After Stroke. Before we get into today’s episode, I wanted to thank everyone who’s been supporting the show. To those of you on Patreon. Your contributions help me cover the cost of producing this podcast after more than 10 years of doing it on my own. If you’re able to support the show in this way too, you can go to patreon.com/recoveryafterstroke to find out more.

Bill Gasiamis 0:23
Thanks also to the people leaving reviews on Apple podcasts and Spotify the YouTube commenters who keep the conversation alive, and everyone who has bought my book The unexpected way that a stroke became the best thing that happened, even those who stick with the ads you’re helping keep this show going for other survivors who need hope. Today’s guest is Terri Gilstad.

Bill Gasiamis 0:45
At just 37 and six months pregnant, she had a stroke that left her paralyzed on her right side and unable to speak. What followed was not only the birth of her son, but also decades of continuous recovery, a story of patience, persistence and her unforgettable watch me spirit and before we dive in, a big thank you to Banksia tech for supporting this episode. They’re the proud distributors of the Hanson rehab glove.

Bill Gasiamis 1:11
So Rebo, this glove is designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the road, you’ll hear more about it later in the episode. Terri Gilstad, welcome to the podcast.

Terri Gilstad 1:25
Thank you very much. I’m glad to be here.

Bill Gasiamis 1:28
Tell me, what was life like before stroke for you?

Terri Gilstad 1:33
Okay, I don’t know if you can see it, but this page that I’m showing you is it’s a page of pictures that was of me before the stroke, and I was just in a new relationship with my current husband, and I was really big at skiing and doing things with my daughters. I was really good. As far as I had real big drive. I was type A personality. I really felt that I was ready to get into my masters.

Bill Gasiamis 2:17
So you wanted to get your Masters in what field?

Terri Gilstad 2:20
I was going to get my masters in administration, and liked to I was a person that liked to do really different things, and I was the first person in my school that was working with cooperative groups, and I had all My cooperative groups set up in my classroom, and it was working out really, really well. So I went home and was feeling like I had had a headache, a migraine headache all day long.

Terri Gilstad 2:54
And I was sitting there thinking, Okay, this is the time that I get to get my daughters down, everything will be fine, or whatever, and then I would go to bed and wake up in the morning with the headache gone. And it kind of didn’t work out like.

Bill Gasiamis 3:12
So what was causing the headache?

Terri Gilstad 3:15
The headache was caused by my blood thickening up. I have anti phospholipid syndrome, which I never knew anything about until after the stroke and the the the way it worked, was something that it always gave me a migraine headache, and probably a lot of just my I had really blurry vision and had like wavy lines in front of my vision or whatever.

Bill Gasiamis 3:51
So how little were the children you were 37 how little were the children.

Terri Gilstad 3:56
The children in my class were eight, eight years old? What about your children? My children, my oldest was almost, I think she was nine, and my middle daughter was, I think eight. They’re 14 and a half months apart, so, but that was the ages of my children. So then I woke up in the middle of the night thinking, you know, something’s not right about, you know, all this stuff. And I said, you know, and I woke up my husband, and I said, Would you please call my doctor and also call an ambulance? Because I think I better go in with this.

Bill Gasiamis 4:44
It has been 27 years, yes, and you’re still kind of living with the effects, the impact, the deficits that stroke created. Mm, hmm. On the day of the stroke, what were your first thoughts when you were diagnosed as having had a stroke? Did you go through that process in your mind?

Terri Gilstad 5:10
I did not know that I had a stroke. I just I was I remember going to the emergency room, being taken over to a CAT scan, having a CAT scan done, nothing was unusual about it, because I was, you know, behaving like everybody else would behave, I guess. And then they took me back into the emergency room, and my doctor was there, and he said, you know, he talked with the other people that were there and reading the scan. And they said it doesn’t appear that she’s gone through anything, which I know I was one of those people that never thought about a stroke or whatever.

Terri Gilstad 5:50
So I didn’t realize that it would probably take a few hours for that to start showing up on the prints or whatever. So I was there. I was talking to a lady there in the room who was one of the mothers of one of my students at the time, and she was like, how are you? And I’m just like, you don’t, don’t know what’s going on. And and I asked her if I could go to the bathroom, and she said, why don’t we give you a catheter first. And I was like, okay, whatever. That is, whatever. And I remember saying, I really feel tired. I just, I think, I’m just going to go to sleep.

Terri Gilstad 6:32
And everybody was like, Fine, go to sleep. And when I woke up the next morning, my I was in the ICU, and my husband was beside no not yet, not at the time I woke up and I was in ICU, at the hospital that I was at in Royal Palm Beach, and they were calling my husband from Shands. My husband had been in touch with my sister and her husband, who were up at Shands hospital, the teaching hospital there, and they decided that they were going to fly me up there. So we were waiting for the plane to land, and then I was going to be taken out.

Terri Gilstad 7:13
But I realized at that point in time, though I couldn’t talk to my husband, and my entire right side of my body was completely paralyzed. I mean, I could feel, I feel if somebody touched me, but I couldn’t lift my arm up. I couldn’t lift my leg up. My face was quite just very, very desperately, yes, very much. And so it was like, but nobody had told me at that time that I had had a stroke, so they flew me up to Shands, took me up and put me in the ICU at Shands.

Terri Gilstad 7:52
And it was like, I didn’t really notice that, you know, I was like, what’s going on or whatever, but I couldn’t say, you know, somebody tell me what’s going on, because I couldn’t get any words out. But it was a really interesting time, because during that time, I kept on going out, and that was when I would go out of my body and look down and see my body on this table. And I was sitting there thinking, you know, this is strange, but, you know, this must be the time that I’m supposed to be going or whatever.

Terri Gilstad 8:30
But, you know, I’ve got a baby. I didn’t tell everybody, but I was six and a half months pregnant at the time, and I was sitting there saying, what’s going on with this, you know, just what’s happening. And they kept, you know, just then I was like, all of a sudden, I felt the calm this. I felt the most unbelievable calm moment. I can’t even describe it. It’s just so incredible. I’m not afraid to die, I’m afraid of death. I’m not afraid of death, but I am afraid to die. So I was sitting there and I was thinking, you know, I was the whole time this was happening.

Terri Gilstad 9:14
I had my complete thinking ability. And I was sitting there thinking, you know what’s going on. And I think I, you know, I’m supposed to be going up to God or whatever. I’m going to be doing there, whatever I was like, doing some Zen with my sister. My other sister was a Zen practitioner, and I thought, you know, I don’t think I want to be here, and I don’t want to leave my husband just having to be with a woman that is just, I mean, it was like I was a half a person I and so I was sitting there thinking, Okay, God, you know you’re, you’re going to be able to take me.

Terri Gilstad 9:55
And then my sister, the doctor, came into the room, and she said, I. Have you she said that she was holding a picture. It was a sonogram of my child. And I was like, there was a baby in there that was waving his hand. It was like, Is this baby saying hello to me. This is wonderful. So I was sitting there saying, this is okay. It’s going to be me and I’m going to be okay. And my son wasn’t about to be born until January. He wasn’t scheduled to be due until January, and this is, like, October 31 and I was like, you know, I think that he’ll be okay.

Terri Gilstad 10:38
If I, you know, have to pass away, or whatever they can deliver him, they’ll take care of him. Everything will be fine. And then I would go out, and I’d go back through this thing, and I was out of my body that I was feeling like I was a part of an entire group. And I never thought about I, I always thought about we. And it was like, you know, they, they say that when you die, you you go out, you become one with the whole group of whatever we are, we the beings that were up there, and he or Maya thing was, I was sitting there saying, okay, it’s okay.

Terri Gilstad 11:23
I’m going to die or whatever, but it’s going to be alright because my husband’s going to be there. Well, my parents both came. My sister came down. My other sister was there at the time, and I was just like, I was ready. I was going to go. I was and then my sister said, you can’t go right now. And I said, like, and she said, You we have to stay and keep you here longer, because the the baby is not going to make it or whatever, and so we have to make you stay here.

Terri Gilstad 11:54
And so I thought, okay, maybe that’s why God isn’t taking me. I’m having to stay wait until it’s time to have the baby or whatever, and then I can die.

Bill Gasiamis 12:06
We’ll be back with more of Terri’s remarkable story in just a moment. I wanted to take a second to thank Banksia tech, who are supporting this episode. They bring stroke survivors The Hanson rehab glove by saribo, a soft robotic glove that helps you retrain hand movement at home. It also helps retrain grip and flexibility. It’s practical, it’s effective, and it can make a real difference no matter where you are in your recovery.

Bill Gasiamis 12:32
And the best part, you can order it right here in Australia and Banksia tech can ship it internationally too. I love being able to share tools like this with my listeners, because they solve real problems that survivors face every day. Now let’s get back to Terri’s journey, including what it was like to return to the classroom with Aphasia just months after her stroke.

Terri Gilstad 12:53
And I was like, I cut completely, like I really felt that I was going to be okay or whatever. And so I, like, I was in the ICU for three weeks, and they said, you know, whatever you feel like doing, just go ahead and do it. And I thought, well, I wanted to die, but and so then I thought, Okay, I’m not gonna die. I’m gonna have this baby or whatever. And they said, you have three weeks that you’re gonna stay here a chance.

Terri Gilstad 13:29
And I thought, okay, and I knew I couldn’t talk, so I thought that’s one week for me to get that my power up speech, because I was known as the mouth of the south and they arranged to have me move down here to St Mary’s Hospital. That was the only hospital that they had down here at the time that had a pediatric neon neonatologist. Wow. And they said, you know, it was okay, because I could be with her, or whatever, that she would be around. Whatever started happen. It all started taking place. But so I, we got moved down, and I was put in a room with another woman.

Terri Gilstad 14:15
And the lady, I don’t know she, she had something different going on with her, but it was like, and I was sitting there, you know, just crying the whole time. I couldn’t control my emotions at all. I was just crying, crying, crying, crying. And so they decided to put me into a room by myself. And so I went into the room by myself, and I was just, you know, lying in the bed, and just, you know, wondering what was going to happen. And they brought me a book, and it was one of those books, like a, not a harlequin, but it’s some type of a book that I would just be reading, or whatever.

Terri Gilstad 14:53
And I could read it. I could read it to myself, but then I couldn’t remember. Were what I had read. So it was like, I always had to start over again, and I’d be able to read those pages faster, and then go a few more pages and get tired. And, you know, it was a very and I don’t remember what the book was.

Bill Gasiamis 15:14
So, yeah, wow.

Terri Gilstad 15:19
It was interesting.

Bill Gasiamis 15:20
You’re in, ICU, you’re six months pregnant, and then you eventually came out of ICU. How long did it take? Yes, I did come out of ICU.

Terri Gilstad 15:30
They kept me in ICU, up in at Shands for a week, and then they put me in, Oops, excuse me. They put me in a room by myself, that it was like I was there was not a regular hospital room, but it was a room where they had like a step up from that they would know that I was in there and I wasn’t a person who could speak to them. So people came in and spoke with me a lot.

Terri Gilstad 15:59
So it was really strange, you know, they were trying to get me to talk, and I was getting a little bit better, but it was still like, you know, it’s very strange to be a person who is used to be such a very fast talker or whatever, to have to sit there and think, Okay, I’m going to answer this question that They just put to me or whatever, but I have to figure out how to get the words out of my mouth and and my vocal cords and all were I’m halfway paralyzed or whatever. So that was a little bit more difficult.

Terri Gilstad 16:35
But at the same time, it was like was sitting there and I was trying to do physical therapy, trying to do the occupational therapy, having a wonderful time. You know, I do everything with my right side, and they tell me, okay, now with my left side, left side, then my right side, I couldn’t do anything. It was like an they had me standing up. I’d stand up and they have me throwing this basketball, and then they wanted me to throw it with my right arm. And I was like, that’s not going to work, or whatever. So they had decided to monitor me.

Terri Gilstad 17:15
And so I guess it was probably, it was probably maybe the middle of November that I had gotten back down there, or whatever. And so they were monitoring me with a thing. And I thought, you’re not going to put group you stuff on, you know, anything. It was a sonogram. And she said, Are you feeling strange? And I was like, no. And she said, because you’re like having contractions every four minutes. And they said, so I got to be discharged from the rehab, taken down. Had to be admitted to the maternity ward.

Terri Gilstad 18:00
They took me in, gave me enough medicine that I couldn’t see straight, much less try to talk or whatever. But it took them about 24 hours to get the labor stopped. And then they said, okay, you’re okay. And I was like, yeah, okay. So I had to get just discharged from the maternity, take him back up to the rehab, admitted to the rehab, and it was like, brother, then I was okay for a while, and then it was like, I think it was probably the beginning of December.

Terri Gilstad 18:33
And I was really not making progress, like I could start rolling myself around using just my left side and my left foot to roll around the floor up there in a wheelchair. But they always would say, Okay, it’s time to check you again. And everything was fine, until one day it wasn’t, and the girl goes, you’re in labor again. You’re having contractions again every couple of minutes or whatever. And I thought this is ridiculous, so had to go back down, had to come back up. It was all crazy.

Bill Gasiamis 19:07
So were you in early in early labor? At some stage, did you go into early labor?

Terri Gilstad 19:17
I was in early labor, but I think I wasn’t dilated or whatever check down there, but I was, I was dilating to about two centimeters, but I had, I couldn’t get to like 10 or whatever, and they didn’t want me to go to 10.

Bill Gasiamis 19:36
So then that pause the for a little while. Yes, and then you went back up to the rehab Ward, continued your rehab and then you went into labor again. Yes, okay. And so when you went into labor and finally had the baby, was it was induced, natural birth C section.

Terri Gilstad 19:59
My doctor said they that I would not be able to have a natural birth as far as the feeling it all and pushing the baby out and things like that. I’d had two all natural births with the first two kids I had. And then it was, I guess they were asking me it was in the early weeks of December, and they said that they could tell that my baby was going to be probably eight pounds or so right then. And it was like, I haven’t ever had one that large or whatever. And they said they were going to induce me.

Terri Gilstad 20:40
So it had to be discharged from the rehab unit, readmitted to the ward again for the the baby, and then I guess I went down there about 10 o’clock, they started the Pitocin drips, everything else. And my husband was there, and my doctor was there. But then he was like, no matter what happens when you feel like you’ve got to push, don’t push, and you just have to let us know somehow that you you’ve gotta push, or whatever. So by that afternoon, about four o’clock, my son was ready to be born. It was so funny, he wanted to stay in the womb while he was like, it wasn’t his time.

Terri Gilstad 21:28
Like, I mean, he wasn’t coming out or whatever. And I was like, come on, you’ve been there so many times before, anyway, but then, then he was able to be born by forceps delivery. And it was gorgeous. My doctor delivered beautiful, beautiful baby boy or whatever. And I was just like, this is great. And then he it was like, there was this real a bunch of stuff going on. And my mother came in, and my mother in law came in, and my daughters came in, and everybody was looking at this baby or whatever, and but I was watching them do all this stuff.

Terri Gilstad 22:08
And I hadn’t given up my my thoughts, and I thought, Now I can die. Now I can die. And because I didn’t feel like I was any thing. I mean, it was just like I had been a whole type A personality. I had so much stuff going on or whatever. Now it was like, I’ve done my duty here. I’ve had the baby, so I’m going to be able to go ahead and die. And it was like, I was not spoiler.

Bill Gasiamis 22:39
Spoiler alert. You didn’t die. So the baby’s born, you didn’t die. You guys eventually, eventually went home. And you’re definitely got used to understanding that being a mother, the previous two times you were fit and well, full body, bodily functions. Everything worked well, and then you went home, I imagine at some stage with a baby, and also half of your body not able to work properly and move properly. So what was it like to go home under those conditions with a brand new baby after the deficits that stroke left you with.

Terri Gilstad 23:24
Yes, I believe that it was okay for me to go home that way because I already had two babies that I’d had all my faculties about me or whatever, and I had my husband and my nine year old and my eight year old daughter, and I thought, this is okay. This is alright. You know, I didn’t have to pick him up, or I didn’t have to change the diapers, or I didn’t have to do this, and my husband had moved all their stuff downstairs. We were in an upstairs downstairs house at the time, part of it was, yeah, go back rehab. I know you will.

Terri Gilstad 24:10
My husband just wanted me to let you know that I was in there and I had the baby with me for a week, and I they’d bring him to me, and I could, like, hold him in my arm, even though I wasn’t able to, like, do anything with my arm. And then I could feed him with my with the bottle or whatever. And then after a week, he was discharged, he was able to go home, and I had to stay there for another month.

Bill Gasiamis 24:38
Wow, so, babies at home, babies at home, you’re in rehab for another month. Are you still thinking I should be dying now, or I need to die? Or did you still go? Did you go back to I need to get home.

Terri Gilstad 24:54
I got, I was, I was hurting the whole time after I had. Had the baby, or whatever, I had a hematoma inside of me that was the size of a grapefruit, related to large. And just having the baby or whatever, I was on Heparin, which is the blood thinning medication, yeah. So I was doing everything. Everything was all right, or whatever. And then it was like, you know, I couldn’t stand this. I couldn’t stand just the thought of having to just go through my life with this whole all this pain and stuff.

Bill Gasiamis 25:36
Is that the non acceptance part, you didn’t accept the stroke that had happened to you, the condition you were in.

Terri Gilstad 25:43
Exactly, and I was so upset about it, and all I wanted to do was die, and I thought, you know.

Bill Gasiamis 25:53
About your condition. Were you upset about that? It happened to you? What were you upset about?

Terri Gilstad 25:58
I was upset about my condition because I couldn’t talk to people. I could not, you know, do the things that I wanted to do with the baby, but I was just like, it’s going to be alright, or whatever. Well, the doctor came in and said, we’ll get you in the surgery for another day or so. And I said, Why not today? And I was in the room to do it within the hour, so that that was when they found out I had the hematoma inside me, or whatever, and they got it all taken care of, and we’re fixing all this stuff.

Bill Gasiamis 26:40
And I was like, what was the hardest part to accept, though, was it the fact that you couldn’t be with your baby? Was it that you couldn’t speak? Was it that you couldn’t move your body? Which was the hardest part?

Terri Gilstad 26:52
Yes, yeah, I think the hardest part was not being able to move my body and not being able to speak at the same time. And then when I came out of the surgery, and I felt better, then I realized that God was not ready for me yet. It was like, for some reason, he was just saying, This is not your time. And I was very, very upset, and I think I did not communicate the way I would communicate with God, usually for about seven years.

Bill Gasiamis 27:29
And you were very upset with God, very upset, very upset for having put you in this situation.

Terri Gilstad 27:37
Yes, so or, or for for not taking me. I was like, Why did you leave Why did you leave me down here? Okay, so. But then I knew that I was going to have to go back to school for the next school year, whatever. So I had from, I think I got out January 20, which was Bill Clinton’s Inauguration Day or whatever. And I was I went home, and it was like was going around, and I was very depressed. And at the time, I didn’t know that it’s supposed to be depression is a very, very common thing that most stroke survivors have a lot of.

Terri Gilstad 28:20
And at the time, it was like, I just can’t be around here. I just can’t do all this stuff or whatever. But then my husband and my mother in law, who was also my assistant principal at school, said that, you know, I had to go and walk every morning, and I had a Hemi Walker and then a cane. And then when I was back at school, I was able to start walking pretty much with my leg.

Bill Gasiamis 28:48
Let’s go back, a little bit. You’re an amazing guest, by the way. I love that information that you have, and it’s probably my, my responsibility, to get it out of you at the right moment. So okay, so it’s all good. Now I want to go back to that part. You’re upset with God. God didn’t take you. Your relationship with God for seven years was not the same as it was before. Now, what was your relationship like before you had that experience with God, did did you have? Were you going to church? Were you religious? What? What kind of a relationship did you have?

Terri Gilstad 29:29
I had more of a it’s more Zen than Buddhist or Christian or whatever. I mean, I knew that everybody was supposed to be celebrating their own gods in their own way, that we all have one God. I mean, it’s like, you know, because whoever My God is can be, you know, your God is in another religion.

Bill Gasiamis 29:57
They might have a different name they might look at. Different on pictures, but we all are one. We all kind of have one God, so to speak. And your connection was more like a spiritual connection than a yes, it was directly religious type of connection.

Terri Gilstad 30:15
Exactly, It’s like I had read the Bible. I had gone through a lot of books about Buddhism or whatever, and everything that I was touching spoke to me that it was like, I’m not any of those. I’m just me.

Bill Gasiamis 30:33
Okay, so what, what happened in the next seven years? How did you like, did you actually remain mad? Like, did you have conversations like, how could you have done this to me and all that type of stuff? How did you express that anger or madness at God.

Terri Gilstad 30:50
The very first, probably months after I got out and was doing my thing walking around the neighborhood with my cane or whatever. It would be like me telling him, why have you done this? You know, why did you do this to me? And then I thought, well, I know you didn’t do it to me, but you had a way of keeping me better than the way I am, or whatever, a very positive, upbeat person. And so having the depression was just like, like, it was just way down on me.

Bill Gasiamis 31:27
And I was going to say, like, and did you were you feeling sorry for yourself, like, were you doing, like, the pity party type thing?

Terri Gilstad 31:40
I was like, you know, how am I doing this? And then I would sit there and say, I’m not doing this. I’m just absolutely not doing things. I went back to school the following, the following August, and when I got back in school, or whatever. It was like, I’ve gotta talk. I have to do this. I am an elementary school teacher, and there have to be seven points of the day that I’m doing math and science and reading and dinner.

Terri Gilstad 32:15
And it was like, Okay, I went back to my thinking, and I thought, you know, I was so upset with myself for being so upset about God or whatever. And I thought, well, I can’t, I can’t be that way.

Bill Gasiamis 32:30
So not only were you upset at God, you were upset at yourself for being upset at God. That’s a lot of upset going on there.

Terri Gilstad 32:38
Here it was. It was a lot. But then I thought, well, I’m going back to school in August, so I thought, I’m going to make sure I get back to school and I’m going to have everything that I have to say for the entire day right now. And I realized I couldn’t type on my computer anymore, not with two hands, but with one hand. I did it like it was okay. So every day I would get prepared to go to this room. First of all, I went to the in second grade. This was my third year teaching second grade, or not second but third grade. And I was like, you know, this is just strange.

Terri Gilstad 33:25
And they said, Well, we’re starting something in the school called inclusion, inclusive education or whatever. And I thought, Alright, I can, I can do inclusion. And they let me go with a girl that I knew, or whatever, another teacher who was a special ed teacher, and it was going to be wonderful, because I would have really smart kids for half of my class, and then the other half of my class were the kids that were SLD specific Learning Disabilities.

Terri Gilstad 34:00
But they could have all sorts of information like they’re they were not able to get their speech out properly, or they weren’t able to write things down or whatever. And so I had to learn all the different ways that they would be learning. And thought I have to teach from their visual, their auditory and their kinesthetic what they would do so much. And so I would sit there and write down my lesson for spelling and my lesson for and each day, it was like, I would stand up there and having books in my hands or whatever, was pretty much normal that it was like, Okay, this is my script.

Terri Gilstad 34:39
And if I can’t figure out what I’m supposed to say, I just got to let look at my script again. And so I had been doing the stuff that would help me talk very much. And also, my husband would take my son and my daughters out, and I would be the only one left in the house. And I. Would scream at the top of my lungs. Just scream to help strengthen my lungs. And so it was really so.

Bill Gasiamis 35:11
So that is how long after you came back from hospital and you were at home.

Terri Gilstad 35:18
Let’s see, I came back from the hospital in January and the following August.

Bill Gasiamis 35:25
So, eight months after everything that you went through, you went back to work. Yes, I did. And you taught at a school, even though you were dealing with aphasia.

Terri Gilstad 35:38
And I had my notes there, and I knew that I would be able to talk like, you know, I put information on the board, and I could talk about that information, and I’d have what they’d be talking about. We’re going to do spelling for something. And I’d had everybody stand up in the class, and they would have to raise their arm up, yeah, out cross and then, and so I was still bringing my therapies that I was having in the hospital.

Bill Gasiamis 36:12
Into your classroom.

Terri Gilstad 36:14
It was exactly right.

Bill Gasiamis 36:17
So did that help you? So what role did going back to school play in your recovery? How did did that? Not, not I understand, like what you did and how you did it, and all that kind of stuff. But what happened with the I don’t want to be here anymore. Did that go away when you were back at school? How did that change that?

Terri Gilstad 36:39
That went away. It had probably gone away back when I went home, probably by March or April. It was like, Okay, I’m gonna be here for a long time. I’m definitely not gonna be going back into the La, La Land that I went into. But it was like, you know, I was not ready to give up, but I was able to teach, like, from my notes or whatever, for about half a day in the beginning. And then by by 1111, 30 each day, my voice would start going out or whatever. And that’s when Linda would take over, my friend.

Bill Gasiamis 37:21
Okay, so your assistant was there to take over and support you with your recovery? Well, that’s very, very useful and helpful to help transition somebody back into work. Was there a particular person that supported you more than anybody? Kind of somebody that was your your mentor, your guide, who was it that sort of stepped up that you didn’t expect, that really impacted you in a positive way?

Terri Gilstad 37:50
My husband, my husband was probably the most supportive and the most positive thing that was around me at the time, my sister, my doctor’s sister from Gainesville or whatever, called me one morning, and she was talking, and I said something about, I think I’m going to be trying to go back to work in August. And she was like, Well, you know, you probably are going to say that, but you’re probably not going to be able to make it back.

Terri Gilstad 38:24
And I was in there going, excuse me, it was like, every time somebody said something to me, like, you’re not going to get this if you don’t have it back by the time six months have passed, just don’t expect to get it back. And I was like, tell me, and I will get that just so it was like that was the point where it was her, her having to say that.

Bill Gasiamis 38:50
That was your turning point. Was that your exactly, big, exactly. So your biggest frustration was having something to say and then forgetting or not being able to say it and get it.

Terri Gilstad 39:01
Not being able to get it out. Yeah, that was, it was horrible, but I had to admit, it made me a better listener. Yeah. I mean, I was, I was a good talker, but I was not as good a listener as I had to become.

Bill Gasiamis 39:19
When did the shift happened with God, like what happened? And you kind of felt okay with God.

Terri Gilstad 39:28
I think it was about seven years till I finally somebody could say something to me, and I was able to respond, but slowly, and it took me probably about that entire first seven years for me to be able to initiate a conversation, and I thought, and it was just such a relief that I was the person that was able to say hello before somebody else said hello to me.

Bill Gasiamis 39:57
So, it took seven years for you to. Get to that stage. Love continuous recovery, things improving, things changing, difficulties, deficits, problems, all sorts of stuff that you’re going through and yet they’re still experiencing recovery. After seven years, you’re still, we’re getting better and better and better.

Terri Gilstad 40:20
And I’m still, I’m still experiencing recovery after 32 years, it’ll be 33 years by this.

Bill Gasiamis 40:32
And looking back, how have you changed? What? What strengths have you discovered in yourself that you didn’t know you had for example.

Terri Gilstad 40:41
I discovered that I have a lot of patience, which I didn’t think I would ever be able to say that, but I realized that when I was taken out of the talking world for a while, it gave me enough time to think and to relate to all the people that were around me and to my children and their friends or whatever. And I thought I had to learn patience, I think, as one of my really good skills.

Terri Gilstad 41:16
And I still, I was really disappointed, because everybody was doing certain things where you could take these tests and it would be, you know, like 100 question test or whatever, and had to put all the answers down. I couldn’t take tests like that anymore because I could not remember things that I would study for the night before, I wouldn’t be able to do anything. My thing was to sit back and fake it till you make it type. I was able to write down all the words that I would say, and then I had the scripts every day.

Bill Gasiamis 42:02
After that, find another way of getting through things.

Terri Gilstad 42:06
Exactly.

Bill Gasiamis 42:08
Did you have to like, adapt.

Terri Gilstad 42:13
Yes, had to adapt in a lot of ways, yeah, a lot of ways, yeah.

Bill Gasiamis 42:20
So what’s life like now, 32 years later, daily living. Did you mention something about some deficits having got worse recently, or something?

Terri Gilstad 42:34
As I got closer to 70, I started feeling like I was going off balance physically, and I have been told that I should be using my cane much more than I was using my cane. And I have been using my cane.

Bill Gasiamis 42:53
Have you been, have you been told you should go back to rehab and do some.

Terri Gilstad 42:58
I’ve been, I have been, that is one of the things that I could tell any of your listeners, or whatever.

Bill Gasiamis 43:04
So you so, so you have gone back to rehab. You still do realization. You still follow all of that stuff, trying to make sure that you stay on top of the balances, etc. Yes. And does it improve? Did you find improvement?

Terri Gilstad 43:19
It does. Yeah, it definitely improves. I usually get it for about six weeks at a time, and I will learn all the exercises. I use the exercise falls, I use the exercise bands. I use the stairs so they walk up, and then you turn them walk down, and just everything that they could put me through, I would have to go back do them again, and then each time I get strong enough, and when I go out, I’d have to be able to come home and do them again. But I decided that it’s probably going back to the rehab place that I went to the last time is probably a good place to be just to help me get my step back.

Bill Gasiamis 44:06
Good move. Good move. So your this is probably more about me than you like I would have expected. I would have expected that by the time I got to 32 years post stroke, I’m done talking about it. I’m done rehabilitating. I’m done all of that. It’s just like because I’m only 14 years post stroke, so by then I get, by the time I get to 32 years you know who needs to talk about it? However, you still found my podcast.

Bill Gasiamis 44:36
Somehow. You still reached out. You still felt that there was important for you to join the podcast and share your story. Why is that? What is the why is it necessary to still, after all these years, reach out to the community and share your story?

Terri Gilstad 44:56
Because I realized that I. I went from being very able to being very disabled, and it happened like overnight, and I was having such a difficult time getting it back. I was so mad at God. I was like, No, how could he have done this to me? Did it? And then when I changed my attitude, when I changed my attitude, and I was ready to say, Okay, I’m going to do this. And they’d say, Well, you’re not going to be able to do that. And I was like, watch me. Watch my epic cat. Hello. Say hello. Hello. Yes, I was always there, though.

Terri Gilstad 45:44
It’s like somebody would say to me, you’re not going to be able to do that ever. And I said, Watch me. Just watch me. And at 70, I am still getting things back. It’s just It amazes me, and don’t ever, ever ever think that you will not get something back. I may not be able to play kickball, but I can watch the kids play and let everybody know you’re out. Yeah, but I just had to adapt to ways that I could do it. I could be a part of what everybody was doing, but in my own special way.

Bill Gasiamis 46:26
So what a lovely conversation. Thank you so much for reaching out overcoming all the challenges you needed to overcome to get on the podcast. I know we had a few technical problems, Zoom issues and all that kind of stuff. So I really appreciate your persistence and your perseverance. It’s lovely to meet you. Thank you so much for sharing your story.

Terri Gilstad 46:51
You’re welcome. Thank you so much for having me on.

Bill Gasiamis 46:54
That was Terri Gilstad, and what an inspiring conversation. Her story is proof that after stroke, recovery never really ends. That even decades later, there’s still progress to be made. If you found hope in Terri story, remember to Subscribe on YouTube or your favorite podcast app so you don’t miss future episodes. And of course, you can pick up my book. The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com/book.

Bill Gasiamis 47:21
a final thank you to Banksia tech for supporting this episode and for making the Hanson rehab glove by so Rebo available to stroke survivors in Australia and internationally. Most importantly, thank you for being here by listening, commenting and sharing, you’re helping build a community where survivors don’t feel alone. Remember to keep moving forward. Recovery is a journey, and you’re not walking it alone.

Intro 47:45
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 48:15
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 48:39
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 49:06
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post Terry Gilstead: 32 Years of Recovery, Motherhood, and the ‘Watch Me’ Spirit appeared first on Recovery After Stroke.

For many stroke survivors, the message is the same: “This is as good as it gets.” Doctors talk about plateaus. Friends drift away. The system quietly suggests that progress stops after a few months.

But here’s the truth: recovery doesn’t end unless you quit. And for some survivors, new frontiers in treatment are offering reasons to keep pushing forward. One of the most talked about and controversial is etanercept stroke therapy, often delivered as perispinal etanercept.

This post dives into what it is, what the research says, and what survivors need to know.

Etanercept, also known by the brand name Enbrel, is a medication originally developed for autoimmune conditions like rheumatoid arthritis. It works by blocking TNF (tumor necrosis factor), a chemical involved in inflammation.

Researchers began asking: if inflammation plays a role in the brain after stroke, could etanercept help restore function? That question led to etanercept stroke clinical trials and off-label treatments around the world.

The approach most often used in stroke recovery is called perispinal etanercept. Instead of injecting the drug into a vein or muscle, it’s given into the tissues near the spine, allowing it to reach the brain more directly.

Some survivors report immediate improvements: clearer speech, better movement, sharper memory. Others notice subtler changes over weeks. And some notice no change at all.

That range of responses has fueled both hope and controversy.

Here’s where it gets real. Etanercept stroke clinical trials are still limited. The treatment is not yet FDA-approved for stroke recovery. Some early studies and case series suggest promising results, particularly in areas like:

• Motor function (arm and leg movement)
• Speech and language
• Cognition and clarity
• Mood and energy
  

But larger, double-blind, placebo-controlled trials, the gold standard of science, are still needed.

This means survivors are often left at a crossroads: do you wait for more evidence, or do you pursue the treatment knowing it’s experimental?

Interest has grown worldwide, including in Australia. While some survivors search for an etanercept stroke Australia trial, at the time of writing, most treatments are still offered in limited clinics overseas. That often means significant travel and cost.

For many, this raises a painful question: how far are you willing to go for even a chance at improvement?

The name Enbrel is often used interchangeably with etanercept. And if you type “Enbrel stroke recovery” into YouTube or survivor forums, you’ll see countless stories. Some show dramatic before-and-after videos. Others describe disappointment.

That’s the nature of experimental treatment. There are no guarantees. But there is one constant: those who pursue it are unwilling to settle.

Let’s cut through the noise. Whether you pursue etanercept, stem cells, or any other therapy, the mindset is non-negotiable:

• Set short, measurable goals. Don’t just dream of “getting better.” Define it. One push-up. One step. One clear sentence.

   

• Win the day. Do the work today. Not next week. Not after someone rescues you. Today.

   

• Reject limits. Doctors, statistics, and skeptics will tell you recovery stops. They’re wrong. Neuroplasticity continues for life.

   

• Stay relentless. Some treatments will help. Some won’t. But your effort is never wasted. Movement, challenge, and struggle. They all fire the brain.

This is where stroke recovery looks a lot like elite training. You don’t back down because the weights are heavy. You adapt, you adjust, and you push again tomorrow.

That’s a decision only you — in consultation with your medical team — can make. Here’s a framework:

1. Know the facts. Etanercept is off-label for stroke. Clinical trials are ongoing, but definitive proof isn’t here yet.

    

2. Assess the risks. While generally safe in autoimmune conditions, etanercept can increase infection risk and has side effects.

    

3. Count the cost. Treatments are expensive and rarely covered by insurance.

    

4. Set expectations. Some people notice rapid change. Others notice a gradual change. Some notice none.

But if you’re considering it, here’s the hard truth: no therapy works without you showing up every day. Etanercept may be a tool. But you are the engine.

Want to see real survivor experiences with etanercept stroke treatment? I’ve collected interviews and recovery updates on my YouTube channel. Watch the Etanercept Stroke Playlist here.

• Etanercept stroke recovery is an emerging, experimental frontier.

   

• Delivered as perispinal etanercept, it aims to reduce brain inflammation and unlock function.

   

• Etanercept stroke clinical trials show promise, but more rigorous studies are needed.

   

• Survivors worldwide — including those searching for an etanercept stroke Australia trial — are watching closely.

   

• Whether through Enbrel, therapy, or pure grit, the principle remains: never quit.

   

“Hope is powerful. But hope means nothing without action. Win the day. Stack the small victories. That’s how you fight back after stroke.”

If you’re exploring etanercept stroke treatment or any advanced therapy, go in informed. Respect the risks. Know the science. But above all — remember that no drug replaces discipline.

Because in the end, stroke recovery belongs to those who refuse to stop.

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.

They told him “no hope.” Wesley Ray turned that into fuel, proving stroke recovery is possible with relentless goals and grit.

Hanson Rehab Glove by Syrebo
Support The Recovery After Stroke Podcast on Patreon

Transcript:

Bill Gasiamis 0:00
Hey there, it’s Bill Gasiamis. Welcome back to the Recovery After Stroke Podcast. First, a huge thank you to my Patreon supporters. Everyone leaving reviews on Spotify and Apple podcasts, YouTube commenters and those who have picked up my book The Unexpected Way That a Stroke Became The Best Thing That Happened.

Bill Gasiamis 0:17
Your support means the world, and it helps keep me sharing stories like the one you’re about to hear now. Sponsoring today’s episode is Banksia Tech, proud distributors of the Hanson Rehab Glove by Syrebo. This isn’t just another therapy tool. It’s a soft robotic glove designed to help stroke survivors retrain hand movement at home.

Bill Gasiamis 0:39
Each finger is supported to open and close, giving you consistent, structured practice, whether you’re fresh out of rehab or years down the track, if you’d like to see how it works, I’ve left a link in the description. Now my guest today is Wesley Ray, a US Army veteran, father of two, and former power lifter whose life was turned upside down by a massive hemorrhagic stroke.

Bill Gasiamis 1:03
Doctors told him there was no hope, but Wesley refused to quit. What followed was a raw fight through setbacks, abandonment and a relentless recovery. In this episode, you’ll hear how Wesley set short, brutal goals to claw his way forward, and how he discovered experimental treatments like etanercept that open new doors stick around. This is one of the most honest and powerful conversations I’ve ever recorded. Wesley Ray, welcome to the podcast.

Wesley Ray 1:32
Thank you.

Bill Gasiamis 1:34
Thank you for being here, mate. Tell me a little bit about what life was like before stroke.

Wesley Ray 1:41
Before the stroke, I was living like a cheat code, like I was big. I was a power lifter. My wife was a body builder. I had a brand new boat, had multiple cars. I went on vacation every couple weeks. I had a lot of people around me. I was very outgoing and social. And we’re always doing something, it’d be nothing for me to go to go on the boat with 14 or 15 people, and have multiple cars. When we’re going to the beach, were going to Cancun like I was living like a cheat code.

Bill Gasiamis 2:30
Very full on life. Lots to do. So tell me about powerlifting. How long have you been powerlifting?

Wesley Ray 2:42
At that time. I’d been doing it for a long time, as long as I can remember. I waited about 230, 240 at the time, and like I said, my wife was a bodybuilder.

Bill Gasiamis 2:57
And how old were you kids?

Wesley Ray 2:59
They are 10 or 12.

Bill Gasiamis 3:03
And what were you aiming towards back then? What was the idea? I know you were living at large.

Wesley Ray 3:10
I was living, that was it. I was just living. I didn’t really have any, like, big goals, because I had everything I wanted. My kids were good and happy. They did sports. I was strong. I had a good relationship. Me and my wife have been together a long time.

Wesley Ray 3:32
Everything was good I had a good job, better loved and was easy and stress free. Had a good schedule so like I worked nights, or I would type my kids in bed, go to work, come on, get wake them up, get the one bus, take a short nap and and then go to the gym. And they beat the gym until they get off the bus. All I did was take naps. I took a nap at work. I took a nap at home.

Bill Gasiamis 4:03
So you weren’t sleeping.

Wesley Ray 4:06
No, I was just taking naps. Two or three hour nap take a three hour nap and be good to go.

Bill Gasiamis 4:16
They say that everyone should be getting seven to eight hours a night.

Wesley Ray 4:20
No, I never did. I guess if I slept more than because of my military and all that, if I slept more than four hours, I would have dreams and nightmares or whatever. So I get used to sleeping, just taking naps. And it worked for me. I was, it was like a power nap every time.

Bill Gasiamis 4:40
Can I just interrupt you? Are you on your laptop?

Wesley Ray 4:44
Yes, sir.

Bill Gasiamis 4:44
Can you just position your head a little bit further up? Beautiful, perfect. So you also, did you do tours? Did you do tours with the army?

Wesley Ray 5:00
Went to Afghanistan once, a long time ago. I was in the army for one contract, and then I went done that contract, going to Afghanistan, and then came home and got out.

Bill Gasiamis 5:18
Were they combat missions?

Wesley Ray 5:20
Yeah.

Bill Gasiamis 5:21
How long did that last?

Wesley Ray 5:23
I was in Afghanistan for a little over a year.

Bill Gasiamis 5:28
And how old were you then?

Wesley Ray 5:32
21.

Bill Gasiamis 5:34
Okay.

Wesley Ray 5:36
So before head is before I had kids and everything.

Bill Gasiamis 5:40
Yep, understand. And the power lifting, was it just something that you did to release some stress? Was it just to make muscles?

Wesley Ray 5:49
Basically, I just always, I love the gym. I love going to the gym, and I wanted to be the strongest person in every room, so I just, I go to the gym tour. There I was the dead. And I like being strong. I like, I didn’t like CrossFit and like wearing myself out and all that, but I liked lifting heavy.

Bill Gasiamis 6:12
So you were fairly active. You were living large. How was your health? Did you have a sense of what condition body was in even though.

Wesley Ray 6:22
I feel like I was good, like, I was big and strong, I was never sick at that time, I took a lot of steroids and some the VA Give me medicine for my blood pressure, and I just kind of throw it in the cabinet, never opened it or anything, and my blood pressure was really high, and I’d been on storage a really long time, and I never took the medicine so but I felt fun like I never I didn’t have injuries, I didn’t have a cord. I didn’t have I was never sick.

Bill Gasiamis 7:07
And how did you find out about the high blood pressure?

Wesley Ray 7:10
Um, because I was a truck driver, so I had a CDL, so I had to go do, like, physicals and stuff all the time, and anytime I ever went to the doctor for a medicine refill or CDL qualification, whatever they would have to take my blood pressure, and it was always high, always to get qualified, like they would have to turn off the lights, I would have to lay down and They shut my eyes, and they are barely qualified.

Bill Gasiamis 7:42
Wow, and you had no sense of that blood high blood pressure causing any headaches or any other problems.

Wesley Ray 7:49
I had no symptoms of anything.

Bill Gasiamis 7:53
I just recently got diagnosed with high blood pressure, and I get headaches. So as soon as my blood pressure is high, I know exactly that is high.

Wesley Ray 8:02
I never got symptoms of anything. The at home therapist came to the house, and a couple, several times they came to the house after they struck and, like, check my blood, blood pressure, and they’re like, like, we need to climb the ambulance right now. Like, wow, it’s 100 over 100 it’s bad. I was like, I feel fine.

Bill Gasiamis 8:27
Wow, man. So what about on the day of the stroke? Was it a normal day? Everything go well? Did you notice?

Wesley Ray 8:34
So it was when I say Patrick’s Day was much of 2024 so it’s the Saint Patrick Patrick’s day and we had friends coming in town and staying with us to go to our Saint Patrick’s Day party that night. So where people at the house, and I woke up early to go to the barbershop, to get cleaned up for the party and to go to the gym before the party.

Wesley Ray 9:03
And I woke up and did my usual stuff, and I was downstairs, and I just didn’t feel like something felt off. And my daughter, my, my older daughter, my, my 12 year old, she happened to be be the only one awake, and so she came downstairs. I was and I was talking to her, she’s, like, something alright. So she went, got me some, like, cheese and crackers, Tylenol and peanut butter crackers and stuff.

Wesley Ray 9:33
And she, she’s the starter of, like, I needed to eat. And so she, like, sat with me and fed me those and then some master got me to the bathroom, and I was in the bathroom floor, and she went upstairs, like, because those people sleep, she went upstairs got her mom. It was like, hey, something’s wrong with dad. I need you. Took him downstairs right now.

Wesley Ray 10:00
Her mom came downstairs and started trying to talk to me, and I didn’t know where I was or anything. I was like, which bathroom in my mind and my upstairs and downstairs and all of that. She was like, okay, something invited and somehow they got me to the truck and they took me to the hospital. In the hospital, like on the way to the hospital, my left side went numb, like, like a dentist, like, numbing my tooth.

Wesley Ray 10:28
Like it was instant. Like, now I got really scared. Then we get to the hospital, and I felt fine. They put me an ambulance took me to a different hospital, but I felt fun. Everything felt fun. And they kept me overnight, and I was talking, I texted my boss and my friends. I was like, Yeah, I’m in the hospital. And then this doctor came in, and they did the contrast scan and all of that, and he was talking to me, and he was like, Okay, this is he was like, you had a TIA mini stroke.

Wesley Ray 11:09
And there’s a spot that we’re kind of worried about, but not sure if the nurses just messed up their contrast, or it’s a rough spot, or whatever he’s Like, but we’re going to look again in six weeks. He’s like, but right now, you’re good to go. And they discharged me and all that. And I called my friends is like, Hey, I’m still coming to the party tonight. I will see our men. They’re like, Dude, you just had a stroke, like you’re in the hospital. I was like, I feel fine.

Bill Gasiamis 11:38
Now let’s talk about something practical. If you’ve ever felt stuck because your hand just won’t do what you want, weak, stiff or curling tight, the Hanson rehab glove by Syrebo might be the solution. Distributed by Banksia Tech. It’s built to give stroke survivors more opportunities to retrain hand function at home, the glove uses soft robotics to guide each finger through exercises, helping to rebuild those brain, hand connections day after day.

Bill Gasiamis 12:06
And the best part, you don’t have to wait for your next therapy session. You can put in the work on your own schedule. Check the link in the description to learn more. All right, back to Wesley in the next part of our conversation, you’ll hear what happened when he decided to try atanercept, and how he changed the way he thought about recovery.

Wesley Ray 12:23
They discharged me, I’m good to go. And I caught somebody else, and I was on the phone with them, talking joking around. My wife is next to me. And I was like, Okay, I’ll talk to you later. And I hung up, and I put the phone in my pocket. They looked at her, and I was, like, I heard this loud ringing sound, and like, everything got, like, weird. I couldn’t tell, like, the one felt like it was sideways and spinning.

Wesley Ray 12:50
And I looked at her, it’s like, something I write. And then I fell back in bed, and I don’t remember a lot over the next couple weeks, or or whatever. Apparently, that’s when they had the major stroke, major stroke, and they said it was a hemorrhagic stroke.

Wesley Ray 13:11
So I had the TIA, the the mini stroke. They did discharge me. I had the major, major struck now is in ICU for a while, and they they told my wife, the kids, that didn’t think I’d make it, and all of that the doctors have since then, and we’ll get into it, the doctors have left me no hope at all, and they keep coming with this bad like prognosis and all that, they’ve let me know hope.

Bill Gasiamis 13:44
So they wrote you off.

Wesley Ray 13:47
And like, I don’t remember a lot, I got told stories, and I saw a video where I was sedated and handcuffed to the bed because they said anytime was awake and my wife and kids would leave I would hallucinate and get mad, angry, breaking stuff, and bending stuff and ripping out chords and pickle ends and all that. And so they kept having to sedate me and handcuff me to the bed. And so I saw a video of my daughter like playing in the hospital room, and I was behind her, knocked out, handcuffed to the bed, and I don’t remember, none of that.

Bill Gasiamis 14:29
Wow, man, you would have been a handful, especially at your size.

Wesley Ray 14:36
I was huge. And that became a problem, because a couple weeks later, one of the nurses tried to, like, get me to the bathroom, and she dropped me. And so from that point forward, I would push the Help button or whatever, and they’d be like, four or five nurses outside. I’d be like, hey, like, look, we can’t pick you up like well why don’t you get somebody that can. I was like, I need help.

Bill Gasiamis 15:04
I got dropped after surgery. I came out of surgery, I don’t know, within about, maybe within about the first three, four hours, something like that. You know, you come out of recovery. They wake you up, they get you into the the high dependency ward. They’re looking after you, but they want you to go to the toilet. So they get you up.

Bill Gasiamis 15:25
And I couldn’t feel my left side at all, and see I still get really I got out of bed. They got me out of bed on my left side. I put my left leg down the nurse who was trying to hold me. She was very petite, about five foot, something high, you know, not very tall at all. I’m, I’m almost six foot, not, not quite, but kind of there, and probably double her weight. And she said, just put your hand around me, and I’ll help you get to the the toilet.

Bill Gasiamis 15:57
And I put my hand around her, and then I just felt straight on my it was shock, horror. I freaked out. I was on the ground. Everyone rushed. They got me back up into the bed, and they realized, Oh, this guy can’t walk.

Wesley Ray 16:12
See, I’ve only fallen a couple of times. There was that time where the nurse dropped me, and then after that, we went to the beach once. And my, my wife, is trying to guide me on the beach. So I was thinking a couple steps with her hands, and my leg just disappeared in the sand, like the sand just ate my leg, and I just fell over it. It was soft, yeah, so soft. It didn’t hurt.

Wesley Ray 16:37
But I was gonna say that I couldn’t get up, and they weren’t big enough to give me up. So these guys walking by were like, do you want to help? Yes please. And then I was at one fast time. I can’t see left, so I started, I was starting off the bench to stand up or to leave, and I just kept saying, all the way to the floor.

Bill Gasiamis 17:03
So are you able to get on your feet? How does that work?

Wesley Ray 17:08
Yeah, I’ve came a long way, and the attendance have helped a lot. So now I can cut and I’m walking with a cane now, okay, um, it’s ugly, but I can do it. I’ve kind of, in fact, you can see one right behind me. Oh yes, I had a big Walker and went down to, like a Hemi Walker, yep, and then went down for like a whole letter Walker. And now for the last couple weeks, I’ve had a cane.

Bill Gasiamis 17:40
yeah, so you know when you woke up, Wes, what was that like to wake up in hospital, realize what was wrong and how bad things were. How did you?

Wesley Ray 17:51
I remember going to the hospital? Like, I remember all of that so, like, I would wake up and I knew where I was and what happened and all that. Um, but then people tell me stories. I’m like, I don’t remember, none, none of that. Like, they’re like, you picked up the machine and slump it down and started yelling and cussing at it, saying it was a person. I was like, I don’t know.

Bill Gasiamis 18:21
How long did you end up in rehab for?

Wesley Ray 18:24
So the first time moved to the hospital, I went, it’s kind of a funny story, but so I went to the hospital, and they took me to an ambulance to another hospital, and they ended up being there for a month, and then they, they kind of sent me home, and I couldn’t do anything, like I couldn’t use the bathroom, I couldn’t feed myself, nothing, so they sent me home.

Wesley Ray 18:55
And my wife, is kind of freaking out, like she didn’t know what to do. No, my, and there happened to be this Stroke Center in Tampa, Florida for the VA. And this right, like, rated, like, the number one stroke center in America. And so we’re trying really hard to get me into that, but the VA kept giving me the runaround and like, your duck, just for this out.

Wesley Ray 19:23
And the ducks are like, I don’t fill that out. And, they’re like, Okay, we’ll look again next week. And, we’d like argue with them. My wife is I can’t, and she’s like, this is a time sensitive thing. And so, like, we followed them for several weeks and then went to the VA for appointment to try and go to the hospital at the stroke center. It’s called source. It was really nice.

Wesley Ray 19:58
And so we got the. Like, Oh, we you have to have an appointment for this, but we can get you in today after two o’clock. And that was, like, four hours away. And I was like, whatever, we’ll wait. Like, and so what the hospital just like trying to cut time.

Wesley Ray 20:17
And we rolled up into a the coffee shop at the hospital, and this guy came on the corner neck ability see him, because I couldn’t see good and so he came up was like, do you do recognize me? I was like, Yeah, a little bit. And it happened to be a guy that I was deployed with in Afghanistan, that I used to live with, um, and he was like, what happened? And my wife told him, because I couldn’t really talk.

Wesley Ray 20:44
And my wife told him, she’s like, we’re trying so hard to get him in this stroke center, but we’ll get in the runway. It’s been several weeks now. And he was like, let me see what I can do. Because, like, I worked at VA. I’ve worked here for like, 20 years, let me see what I can do. And that was, like, a Friday or something.

Wesley Ray 21:06
And the following Wednesday, I was checking in and tip up at the hospital down there to say that was in the hospital for a little over four months. Wow, I got to the hospital. And like they it’s like two of the weeks in, the doctor came in and they did another scan and all that. And like I said at this time, I could be so I couldn’t feed myself.

Wesley Ray 21:35
So I had three goals when we got to the hospital. It was, I want to do stairs, because my bedroom is upstairs and hadn’t been there in a long time. I wanted to be able to feed myself, and I wanted to be able to go to the bathroom. Those are my three goals when I got to that hospital. And so the doctor came, in short, I’ve been there about a week, and they just done a scan and all that.

Wesley Ray 22:02
And the doctor came in with a psychologist and all that was like, okay, like, it’s just something to scan. And she had my wife on video call, and she’s like, Hey, like, you want recovery, you want improve, like, what? And she’s like, I’m sorry to tell you this, and the Doc, and she told me, she’s like, you won’t get better. Like, this is a bad stroke, and what it impacted you won’t improve. And, like I said, I had a lot of disabilities at that time. And so she left, and the psychologist was like, How do you feel? Like, that’s bad news.

Wesley Ray 22:42
How are you taking it? I was like, I’m fine. Like, I have my three goals. I know I can get better than accomplishless. But other people need that hope, like hope is powerful, powerful, and other people need that hope. So it wasn’t for me. Y’all upset other people. And couple days later, I can’t remember, maybe that night, my wife sent me a text message. We’d been together 22 years, she sent me a text message that was like, Hey, I can’t be a caregiver.

Wesley Ray 23:18
Things with your hard and heavy and I want fun and easy. I can’t do this. I want to divorce. Wow. I was like, well, and that’s what I meant by the power of hope.

Bill Gasiamis 23:32
Wow, man, so that’s crazy. Did you see you didn’t see that coming at all?

Wesley Ray 23:38
No, not at all. Like, we’ve been together a long time, so the hospital was like, the doctor was like, there’s no point in you being here, like we’re going to start looking at sending you home, like there’s no point in you being here to rehab. And the pilgrim was called Source. There’s like, stroke, optimal, act optimal, something, rehab center, something, it’s really nice place.

Bill Gasiamis 24:13
Dude, this is making me mad. I’m listening to what you’re saying. It’s making me angry. The part where they tell you there’s no hope. You shouldn’t even be here.

Wesley Ray 24:22
And they’ve done that a couple of times. They did that, like, last month, like, so, so they’re trying to send me home. They’re like, there’s no point in you being here. And one of the physical therapists I can fell in love with, like, I’d see her twice a day, and like, she’d come do extra time with me, and we spent a lot of time together for several months.

Wesley Ray 24:55
And then she got pregnant and had to leave. But like, she was, I told her, I was like, I don’t want to go home. I think I can get better. And so she, like, she put her foot down and would not let me go home. And like, did these tests, and I kept getting better on the test. And then they showed the doctor, know, like, no, must I send him home? Like he’s doing good. He’s getting better. And my numbers were, they were, like, getting a lot better. So me ended up being there that was like, three or four weeks in that ended up being there three or four or four months after that.

Bill Gasiamis 25:41
I want to try understand your mindset, right? So a you’re somebody who’s been deployed, you’ve seen action, You’re a big guy, you’re a tough guy, you go to the gym, you sleep three or four hours per little shift. You’re raising a family. You’ve got kids. You’re partying hard.

Wesley Ray 26:04
I got two girls. I’m a great girl, Dad, because I didn’t hunt, I don’t fish, but I like hugs and kisses. I love being a girl Dad.

Bill Gasiamis 26:15
You’ve got everything going for you. You have a stroke, everything’s taken away, and then people are not interested in helping you, and telling you, you shouldn’t even be here, and then your wife leaves you. How do you develop the mindset to push through all of the drama and all of the problems that you’re faced with in such a short amount of time.

Wesley Ray 26:43
Basically, I was just trying to stay busy and get to bed and wake up the next day and just trying to win the day. So I would go, like, I would volunteer for extra, extra physical therapy. So like, I would go in the morning, and they would come get me a lunch and all of that. And I love the physical therapy, but I’ve always loved it because I like the gym and all that.

Wesley Ray 27:09
Yes. So I’ve go to all these therapies, like occupational therapy, speech therapy, physical therapy, all these therapies, vision therapy, and that hospital had their direct recreational therapy, all that music therapy, so I was pretty busy to what they did. So I go to all these therapies for 6, 7, 8, hours, and then come back to my hospital room and look at my phone, and it’s like, my wife telling me that she can’t do this. She wants a divorce, and I’m at the hospital all alone, and, like, it’s sucked. So I go work as hard as I could, come back and, like, look at my phone, and it just crushed me.

Bill Gasiamis 28:01
Yeah, and did you guys have previous any challenges, any marital problems, anything like that that you’re aware of?

Wesley Ray 28:09
No.

Bill Gasiamis 28:10
Yeah, wow, man, look at stroke is really hard. A lot of people who care for people who had a stroke can’t do it, and it’s it’s not something that we can describe or understand or explain. You would say, I would never do that to her. You know, all that kind of stuff we would never know. I know it’s a difficult thing to hear and go through, but you don’t know how you would respond to something that you’ve never been through before.

Bill Gasiamis 28:36
And I’m not saying because I’m not saying that, that I’m 100% certain that I would hang around either, like, I hate saying that. I it even bothers me that it comes out of my mouth, but there’s got to be a part in everybody that just wants to check out and go. Now, this is too hard. I can’t do this. And I think it’s that emotion.

Wesley Ray 28:57
I’m different, I guess. But yeah, I would see it as a challenge, like, we’re going to get through this. Yeah, the challenge is this, the goal is this. We’re going to beat this.

Bill Gasiamis 29:07
But Emotionally, I think that some people, emotionally can’t do that hard work because they must have other emotional issues.

Wesley Ray 29:14
That’s why I blame other issues. They’ve they’ve left no hope, yeah, and like, so at first she’s getting told I won’t make it, and then she getting told I won’t recover, and all that. And then, like I said, they did it again a month ago.

Bill Gasiamis 29:32
I don’t blame you for blaming the doctors, because that’s a disgusting thing to say to anybody. I just don’t understand. Well, I don’t know why.

Wesley Ray 29:41
They would explain the doctors a little bit her living was, of course, that was going to happen, I guess.

Bill Gasiamis 29:47
like at some stage.

Wesley Ray 29:50
Like the priorities now are way different, like after, after this, or the experiences taught me, like, I. Because I was gone, almost died. I was by myself a long time and all that. I just want my kids. I don’t want to be alone. I want my kids all the time, like it’s unhealthy. How much I want need them here, yeah, and with her, she’s experienced something else she had to be she’s going through something else.

Wesley Ray 30:24
I was alone. She had to be there for the kids. She had to take care of everything. And so now she wants to, like, be single and fun and party and all of that. My property is the family, and the kids, hers is something else, but they still cause two different experiences.

Bill Gasiamis 30:47
And you know what it does to caregivers, it also does the other thing it does the life’s short. I’ve probably got things I want to do. What if this happens to me? And then what am I going to do then?

Wesley Ray 30:58
Very much like one of the really bad conversations that we had, like it was okay between us, but I messed up at the hospital being alone, and I googled the life expectancy after the stroke for the type I had, and all of that there was, like 24% or 33% or, I think it was 24 it’s 24% of people survive. Of those 24% 33% make it to one year. I was like this, such I said that that looked at that.

Bill Gasiamis 31:37
Yeah, I agree. I agree. Hemorrhagic streak is such a shit stroke to have, man, I know it does cause a lot more death in hemorrhagic stroke than in ischemic stroke. And yeah, I discovered those stats a few years, quite a few years later. So I’m very thankful, very grateful for being here.

Wesley Ray 31:57
I was in the hospital looking at that like, Why did I look at this? Yeah, why did I look this up? Like, this does not help at all.

Bill Gasiamis 32:08
So you had a couple of things go your way. One was that your former army buddy who came and helped out. So that was.

Wesley Ray 32:18
Just happened to see a metric officer, yeah, didn’t even know he worked there, but, but he was able, like I said, Whatever he did, I was in the hospital four or five days later.

Bill Gasiamis 32:30
Yeah, blessing. That’s a blessing and a half. Yeah. And then what about your military training? Do you think that had a lot to do with the way you’ve recovered, bounce back approach this.

Wesley Ray 32:45
I don’t know. Maybe I don’t really look at it like that. So for me, it’s just I had these goals. I know I can do it like the it was either try to win the day and go to bed and do it again the next day and look, look for something to look forward to, like going home seeing my kids, whatever like right now, my goal is want to be able to do 20 Push Ups by the kids fall back. And I tried yesterday I could do 11. Wow. This is a big difference. Kiernan used to do like 150 but because that’s big, yeah, I went from benching mid force to like, 10 pounds on their machine. So it’s a big difference.

Bill Gasiamis 33:43
That’s where you started all those years ago. Yeah, wow, man. And then you met this other amazing person in hospital who went.

Wesley Ray 33:56
They were about to send me home at one point, and they’ll like, we want you to stay another four weeks. And she’s like, if I think I can have you, like, almost walking in that four weeks, wow. It’s like, okay, I’ll say, just because you and she, she got pregnant and left and wouldn’t have the baby, and the next opportunity I had to go home because she wasn’t there anymore, I took it and went home.

Bill Gasiamis 34:29
Yep, fair enough.

Wesley Ray 34:31
They were trying to get me to stay at that point, because you’re doing so good, like, want you to stay. And they, they’re like, a long term program they’re going to put me in and I was like, No, I want to go home like I miss my kids. I don’t have a wife anymore. I guess I want to go home. I want to be in my bed, like in my house, my life, all of that.

Bill Gasiamis 34:55
Did you have any parting words for the doctors who said that there’s no hope for you? Did you. Did you find them and tell them that.

Wesley Ray 35:02
They were willing, and so I was talking to the doctor, and they were like, tell me no. And I was like, Look, I’m doing all I can to get better. Like I’m if I don’t have the kids and I don’t have physical therapy, I’m walking using the big Walker, like there’s a gym half a mile away. I’m walking that 25 minutes to the gym just just to be there.

Wesley Ray 36:08
And the doctor was like, Well, that’s good that you’re going to the gym and all of that, but you need to understand you’re wasting your time. Your brain is not using the muscle pathways to build muscle anymore. She’s like, so you’re going to the gym is good and great, but, like, it’s not helping. I was like, would you even say that to me? Like, what? What is that even matter? It’s good in my head.

Bill Gasiamis 36:38
It’s a load of bullshit. It helps a lot, even if you’re not making muscle, because it’s not about the muscle, it’s still firing neurons all over the place. It’s connecting your body to your brain, your legs, everything.

Wesley Ray 36:50
Exactly. And I like being there. It’s good for my head. It’s good for my mental. It passes the time. So I go to the gym, I come home and the kids are back from school, yeah, or if, if it’s because we do week on, week off. Now, if it’s the week that they’re here, okay, I go to the gym when I come back, that day is gone. All I have to do is go to sleep and do it a couple more times, and the kids are back like.

Bill Gasiamis 37:19
Physical therapy is so important.

Wesley Ray 37:22
That same mindset. She’s like, it’s not helping you. You’re wasting your time with that mindset. Why am I even going to physical therapy? Like, yeah, obviously, I’ve been going, and I’ve been I’ve been doing extra, and I’m it’s helping, it’s working, and you’re telling me it’s not gonna help. It’s not gonna work. I don’t know.

Bill Gasiamis 37:43
Did these guys impact your mental health? Like, did they make you feel really down, or anything like that.

Wesley Ray 37:49
The doctors didn’t okay. The doctors would say that. And I’m like, You’re full of like, I don’t believe you. I know I’m getting better. I can feel it. I can see it, I can tell by people looking at me more important, like I said, it wastes the day. I’m winning the day. Yeah, I love them. So the doctors didn’t really bother me. They bothered the people around me that needed to hear something positive, but they didn’t really bother me.

Bill Gasiamis 38:21
Yeah, that’s the thing. You know, the people around you, I found myself in a similar situation where a lot of my job when I was recovering was to do the work so that everyone who came to visit me and saw me could see improvement and recovery and they could be okay.

Wesley Ray 38:38
Exactly if they weren’t in the barbershop a couple days ago. And so I was kind of famous at the barber shop, before the barbershop, before this truck. They all knew me from a certain event and and so they saw when I was really big, and they saw me coming in wheelchair, and then they saw me come in, and they up Walker. Then they saw me come in with the other Walker. And so couple days ago, Thursday, they will, they saw me come in with just the cannon. The guys like, Dude, this is crazy. Yeah. And like, those compliments kept me going, keep me going.

Wesley Ray 39:24
The good to you. It’s good to hear when other people notice you’re doing something, yeah. Like I took my took my daughter. We I live in a good area where everything is close by and we can walk to a lot of places. So this art studio, so me and my daughter walked to the art studio. She could paint and do all that, and walked in the art studio, and the lady was like “You came in here in February with a big ass Walker. And like, now looking at you like you came. Long way I can accept the liquidity you’re going to the gym, then you’re using a cane, like you’re not shaky”

Wesley Ray 40:09
And then mentally, especially the gym part, because I was like, the last the last thing hurt, but the gym was, it’s not going to help. So her saying she could tell I’m going to the gym without me saying anything. I was like, okay, good. It is okay.

Bill Gasiamis 40:26
Your instincts are guiding you really well.

Wesley Ray 40:30
The other alternative is to stop it’s too quick.

Bill Gasiamis 40:35
And then to just curl up in a ball and go into the corner and then just end it all. Exactly, yeah, no point.

Wesley Ray 40:43
And my kids, my kids need, need me as much as I need them so. And they’ve been very, very helpful. Yeah, they got to, like, in the first hospital, they got to, like, come to a therapist with me. Is it my oldest daughter wants to be an occupational therapist now. And she thought that was, like, great. She’s been to physical therapy with me here a couple times, and she loves it. Like, not, not so long ago that they took my walker and put it in the kitchen. And they’re like, you can, you can get to the kitchen without it. I was like, No, I can’t, like, give me the walker, stop playing.

Wesley Ray 41:31
Well, I know, seriously, get the walker and what. She’s like, hey, I want to see you push the basket without the worker. And I was like, you know, I can’t do that. She’s like, we’ll go slow. If you fall, we’ll both fall, we’ll both get hurt, but I’ll do my best, right? And I was able to push the quarter one target. Wow, man. How old is this kid? What led me to the one letter worker. Because I was like, okay, I can do this. How old is this kid? She’s 12. That’s amazing. They’re 10 or 12 in the 12 year old, it pushes me a lot. It helps me a lot. The 10 year old is very sweet.

Bill Gasiamis 42:19
Yeah, that’s good, too. That’s amazing, man. So you know, a little earlier, you said that you asked for help. You needed help. What? What kind of help did you need that you asked for?

Wesley Ray 42:32
Well, at invested these times for different things, but at that time I was trying to get, get them to give me some sort of a testosterone replacement therapy, because before the stroke, obviously I took steroids, so my numbers were super high, and then I had this stroke, and they cut me off court. They should have not complaining, yeah. But they cut me off cold, and so that kind of shocked my system into, like, now recovering and a lot of things going with testosterone, other than the muscle, like, it gives you energy and improves your mood. It makes you not get sick.

Wesley Ray 43:13
All of that, it makes, makes you more confident. And all like I wanted the testosterone for, for more than mental stuff. Like, I wanted to be confident. I wanted to feel better, like, so I was like, please. And they, they tested my testosterone in Tampa, and it was like, so before this truck, it was like, over 3000 it was high through the roof. I took a lot of storage suicide seven months or whatever, after this drug, my testosterone level was 108, which is super low.

Bill Gasiamis 43:54
Not healthy low for a man.

Wesley Ray 43:57
And especially when you’re trying to recover and improve and that you have, like, this number, whatever, and that directly affects improving the recovery. Yep. So I was like, hey, look, I’m not trying to, like, take steroids and burn muscle and all that. I’m just trying to, like, improve my head. Really, like, improve my confidence.

Bill Gasiamis 44:23
Yeah, improve my mood, yeah, it probably would have been appropriate in your situation, simply because the your body is so used to receiving testosterone, it doesn’t make as much testosterone as it may have if you hadn’t been taken over.

Wesley Ray 44:40
Trying to get back up to, like, low normal, low normal. Like, yeah, they said no. Like, no. Like, when I didn’t give the testosterone to build muscle, it’s like, I’m not trying to build muscle. Like, I was like, I’m I’m going to the gym. Like this. Now we’re in trying to. Food, yeah, rehab. They’re like, Oh, it’s good to go into the gym, but yeah, it would help.

Bill Gasiamis 45:06
Yeah, fair enough. And were you, how many years were you on testosterone? And were you cycling through? Did you have down times?

Wesley Ray 45:15
I cycled a few times, but I was not testosterone a long time. I think at that time, it had been well over a year, maybe two years, since I came off of it. But I loved it. I was addicted to it.

Bill Gasiamis 45:34
Made you feel invincible, tough, strong.

Wesley Ray 45:38
It made me just a better person, because I was so strong and so confident and so happy and all that all the time, like people are in a bad mood, they’re usually sick or tired or hungry. That’s so strong made me eat better anymore. So it’s never hungry. It made my sleep better, and it gave me more energy, so it never tired, and they helped my immune system, so it’s never sick. So I I was in a good mood all the time.

Bill Gasiamis 46:11
Yeah, understand. Okay, wow, so you have a stroke. Everything goes to ship. People that should be saying, everything will be okay. We’ll offer you some hope. We’re not offering you hope. Your wife leaves you your children. Step up, your 12 year old, steps up, your nurse, steps up, your buddy from the army. Days you hear you bump into steps up.

Wesley Ray 46:42
And I’ve never talked to him again. I don’t have his number or anything because I couldn’t use the phone, I couldn’t text or talk or whatever, like, I had to win on everything. So I never talked to him again. My wife talked to him. He got us in the hospital, and I’ve never talked to him again.

Bill Gasiamis 47:00
Wow. That’s just amazing. Did it even happen? Is it just an imagination thing? What is that? How is that?

Wesley Ray 47:09
I saw him, I remember before I checked in, my wife sent my sent him my thank you message. It was like, hey, we’ll check in. Thank you so much. And like she’s talking to him, but I wasn’t.

Bill Gasiamis 47:23
Wow, I love it. And then at some point you hear about or you learn about etanercept.

Wesley Ray 47:31
So, obviously, I was in the hospital on Tampa a long time by myself. So I just look at things and Google things like life expectancy. And so I started watching all these videos, and that’s why I found your podcast and all that, and I found Paris final eternal set. And so it’s like, okay, like my goals when they get back, or I want to get the eternal set, and then I want to get some stem cells, and then I want to buy a Tesla, because I can’t drive. So I went to buy, I love it. I love it. I was like, those are my goals. I want to get home.

Wesley Ray 48:14
So I got home from the hospital, and that’s what I did, so I get home in September, I saved up, or the end of September, I sent up as much money as I could. Obviously, there was like I had to move houses and vehicles. Could repossess and all that because of my wife leaving and all that and so. But I sent those money. So in January, I went to buckletown for the press panel, a tenor set, and got two doses down there. And it was great. It helped a lot.

Wesley Ray 48:54
And we can talk about that, yeah. And then at the right after Fourth of July, I got this stem cells. I haven’t figured anything from them yet, but they said it takes, takes a while. So I got this stem cells July 7, and then I bothered about a Tesla two weeks or two, or two weeks ago.

Bill Gasiamis 49:17
Okay, so you went to Boca Raton. You? You met the team. You met Dr tobinick. What are they like? How are they?

Wesley Ray 49:27
So you can go Dr. Tobernik was nurse. Obviously, everyone picks up Dr. Tobernik, so I picked the nurse just to get in sooner. And so we went there. My mom drove me down there. Obviously it cost, what it cost, which is not unreasonable. It’s not like a you have to save up for it. It’s like, yeah, 8000 a shot. At the time. It was more than 8000 our shot at the time. And so I got down there, and it’s kind of like an assembly line, but so we showed up, and there’s this couple, and so we sat there when the wedding room, and there’s this couple, and they’re from Sweden.

Wesley Ray 50:21
And they’re like, this is a fourth, fourth shot. They’re like, and they started telling us about their shots. And, like, before the first shot he can walk to he was in a wheelchair. So we came and took one shot and the second then we came back. And we stayed for a month because of him, Sweden. So like, we stayed for a month and got this second and third, and now your letter will hear during the fourth. And like, obviously the guy started issues. But, like, he got up, he walked in, took this shot.

Wesley Ray 50:59
And so that was, like a big confidence boost. Like, okay, they’ve had four because for a long time, like, watching your podcast and all that, and watching videos and reading reviews and comments and all of that, it’s always, you always see the first dose. Like, if you watch videos, it’s like he got his first dose every Tennyson, and then like, you people and like, so the second and third does my okay. What can like? Maybe I should just get one. I’m not seeing anybody like getting anything from the second and third one.

Wesley Ray 51:38
Nobody really talks about the second and third one, the improvements come off the first one, mainly, so almost like, it’s a lot of money. I was like, I almost wanted to save the money and only get one shot. And then I was like, No, I will always think about, like, what would happen if I got the second one. And so we went down there and they did all this testing, like, make you draw, draw something, make you do math, look at numbers. And my vision and my field cut were really bad at that time, like I kept walking to the girl’s bathroom because my brain would black out the W and the O.

Wesley Ray 52:23
So all, all I would see is men or not see the left of anything like, like, if I’m watching in a wood show and two people came, came up to the bottom, I’d only see the person on the nasty person on the left. If I tried to read a block off, like the first few numbers or first few letters or whatever, like, it was really bad. My my vision was, is the left side of both my eyes so all I could see. I had a right blue fuel kind of but I could not see left at all. I could basically only see sugar head and they didn’t. It was like, there was no, like, black spot, or didn’t know, blur.

Wesley Ray 53:08
There was nothing telling me to, like, scan and look, I wish there was, because then I would know, like, oh, this the end. No, it was just like, it looked good to me. So after the first shot, so they gave me the first shot and did the testing. And like, I could barely hold the band mom, because the film feeling on my left side is is was gone at the time, and my right side shook. So it’s kind of like it’s bad the way, either I can’t feel the left and I can’t see the left to know what it’s doing or what it is like, if you tried to shake my hand, I wouldn’t be able to see your hand, but you have to look at your hand.

Wesley Ray 53:56
I had no peripheral vision from that side. So they give me the shot. Well, they had me do all the tests, and I couldn’t. I could barely hold the pen, like it was just like, Mark, Mark, Mark. Like, terrible. And mentally I was fine, like I could read November the math, and I could pass all the testing at the hospitals and all of that, like my memory and like smarts was still there, but so they give me the first shot, and I couldn’t really, of course, like anybody I’m there hoping to walk again. That’s what I’m there for, hoping to be able to walk.

Wesley Ray 54:41
So they give me the first shot, and I sat up, and they come over to give me orange orange juice. And I reached out. Got to go and choose one with one hand and drink it. Where it was taking me two hands to drink anything, because I shook so much so like I couldn’t feel. The left so I’d hold the things in my right hand, but my right hand would shake too much, so I had to hold it with my left hand to keep it from shaking. It’s just, it’s like this whole process. So they came up and they gave me the one. She set me up, and I drink it with one hand.

Wesley Ray 55:19
And then it started talking, and the nurse looked at my mom, and my mom looked at the nurse, and they were like, your voice is way better now. Like, we can understand what you’re saying, and I can, I can’t really hear myself, like, I know if I mess up my word, but like, I don’t have volume control. So I was like, Okay, well, that’s good, like, so that told me that, like, they’re talking with, like, your voice got a lot better. And then my mom walked behind me to, like, to a different table and skim up on my left side. I was like, I could, I could kind of see you.

Wesley Ray 56:01
It’s just like, where and like, so like, we’ve kind of like, tested how far I could see her, and I was like, I can kind of see you. Mm, hmm. And so my vision got a lot better. I can now read and see the like, the bathroom signs and stuff like that. I don’t block off the front, front letters anymore of the words or the numbers or whatever. I still don’t have a good free fuel on that side, but my vision came in a lot, and my voice changed. So honestly, I was kind of disappointed, though, because as I left, and my mom was like, Oh, that’s great. Like, you can see better, you can talk better, all of that.

Wesley Ray 56:51
And I was like, Yeah, but I was hoping for the like, be more physical, like, be able to walk and not shake as much. And I want, I wanted to see the physical stuff. Like, seeing and talking is cool, but like, in my heart, I wanted to get better that way. Like, yeah, because there’s a lot of stuff. Like, I was like, I would never get to do that now, like, I’m a girl, girl that I was like, I would never get to walk my kids down the get to order, baby, because I can’t use my left hand.

Bill Gasiamis 57:28
You started to get a little bit negative, yeah.

Wesley Ray 57:32
And so I was like, Well, it’s kind of sucks. And I was disappointed, really. And we stayed in Bogota for like, a week, because you had to have a week on the first shot to the second shot. So we just stayed then, then went to Key West and had a little vacation and all that. And I went back to the second shot. So before the first shot, they tested my my hand grip, and it was bad. On my left hand, it was like 8.2 something. So they tested it again before the second shot, and it was like 38 point something. Like it, it tripled what it was. And like it, got it a lot better.

Wesley Ray 58:19
And so then they gave me the second shot, and they took me upside down and all that. And I, I got up, and I was like. I was like, I don’t feel anything. And the nurse was like, see if take a couple laps on the room, like with the with the can or all that. It’s a It’s funny, there’s, you’ve seen the videos. The nurses aren’t very big. So like, I’m like, if I fall this the way, y’all are going to catch me. Like, especially doing what y’all are doing. Like, no, like, Y’all are there for video purposes. That’s it. I was making a lap around the room, and then I kind of just handed there’s a big game.

Wesley Ray 59:08
It’s like a big card game. I just handed it to the nurse, and they walked around the room with nothing, with nothing. And I never done that before. Wow. And my mom is recording, and she like, Oh my God. Like, this is crazy. And I think I sent you the video, um, and so I was like, I felt like it to me. I felt like I was Bambi, like in my head, like feeling it, nothing felt stable. I felt like Bambi, like everyone could see me struggling. And then she showed me the video, video, and I was like, I didn’t look bad at all. Like, I look like a normal person just walking around.

Wesley Ray 59:53
It was a big, big shot for me, because, like, is it? I felt like, Baby, like everyone was going to notice. And see and make a big deal and like, I didn’t look good, but so walked around the room. And so we’ve came, I’ve came home since then, and it just helped a lot. And I can it feels like it helped my I don’t. And my daughter said this, she’s, like, a massive it helped as much as it gave you confidence and like.

Wesley Ray 1:00:28
So now you can just, like, stand up and walk around and, like, he been through this now, like, so now I can, pretty much, I don’t, like, in my apartment, I don’t use a can or anything. I can walk around without it in public because of the ground.

Bill Gasiamis 1:00:48
Different surfaces.

Wesley Ray 1:00:50
That mess with me a lot. So, like, I don’t have the confidence to go out like that, okay, because declines definitely bothered me.

Bill Gasiamis 1:00:59
So it caused the it caused the physical improvement, but also a a personal kind of confidence improve all as well. So you have the combined improvement there, and that’s good, because that means you can try something you haven’t tried before, and then you can rehabilitate that thing that you’ve been afraid to rehabilitate.

Wesley Ray 1:01:22
Well and before the before the shot like my physical therapist, my opposition therapist, took a video of me doing all these exercises, and then when I get back, she redid the mulligan video and made it a side by side, showing like before 10, it turns it after 10, Recep and they looked way better on the second one, like it wasn’t so jerky and wasn’t so shaky.

Bill Gasiamis 1:01:51
When you’re there, do you come across other patients at the same time? Do you sit in the same waiting rooms, or anything?

Wesley Ray 1:01:59
So when you first get there, the office is kind of small, so you don’t see anybody in the office. Like, they bring you in, you bed, they watch you to the back, they give you a shot. You leave outside the office, like in the main lobby of like, it’s a big building. So there’s other business, businesses. But that’s why I met the couple from Sweden, though I had just got sit out there fill out this paperwork. And so I filled out the paperwork, and they were like, would you for this? I was like, Yes. Like, this is our fourth time, so we get to talk for a second.

Bill Gasiamis 1:02:39
You did talk to a few people. Okay, so your results were positive, but you also saw the negative results in other people on YouTube, I imagine comments that people said it didn’t work, or that to scam.

Wesley Ray 1:02:55
And they say that they’re like, we, before they schedule you, they said that they’re like, hey, like, this helps everyone differently, right? But they told me that, like, when I talked to them about the deficits, they were like, we’ve seen improvements and a lot of that, like, but we can’t promise you anything. It’s stem cells was kind of the same thing. They’re like, there’s a good chance you see nothing, okay, but there’s a good chance that helps.

Bill Gasiamis 1:03:27
So you feel like you’re very informed when you go in there. There’s no pretending that you’re definitely going to get a result, that you’ll be 100% after this, and there’s none of that. It’s very transparent that it may not work.

Wesley Ray 1:03:40
And let’s be honest, like, if you’re looking at that as an option, you’ve probably obsessed over and then you research and watch videos. It’s not like a impulse thing of you stopping at McDonald’s to get ice cream, like, like, beforehand. You know what you’re going into beforehand?

Bill Gasiamis 1:04:05
Yeah. What a journey, man, looking back, how have you changed? Well, clearly not. We’re not talking about physically now. But what about you as a person, emotionally and mentally?

Wesley Ray 1:04:21
I’m definitely way more patient, and I’m because of the patience, like I have to be nicer. I can’t get upset. I can’t let things bother me. For one, if I do, my hands will start shaking really bad, but because I have to do everything so slow now and talk so slow, and all of that, I became way more patient, and that I used to be a fighter. I would fight all the time. I can’t do that now. I physically I can’t fight. So it’s like, Why send anything at all? Why get upset? Why. Get mad when I can’t really even do that anymore.

Bill Gasiamis 1:05:04
No, you have to be a lover.

Wesley Ray 1:05:07
Exactly.

Bill Gasiamis 1:05:09
That’s good, man. That’s good. So you you were strong, right? Muscular, physically, you could push through anything. What strengths, internal strengths did you find that you didn’t know that you had.

Wesley Ray 1:05:26
I’ve always kind of been a cool person, like, now, like, long term goals, but like, what’s the next thing I can do? What’s the next thing I can look forward to? So it was for a while. Was okay. I want to, I want to be able to walk and want to, I want to be able to do the stairs. I want to be able to feed myself. Want to be able to go to the bathroom. Then it was okay. I want to be able to, I want to do a 10% and then it was okay, I want to get a Tesla.

Wesley Ray 1:06:07
So I always had something to look forward to, and always had a deadline. So I announced I want to be able to do 20 push ups by October 5 my kids spring break, because I’m taking them to the beach and I want to be able to do Tony push ups. So that’s my goal now, yeah.

Bill Gasiamis 1:06:31
So it’s a lot of just doing what always worked for you in the past, continuing to do the things that worked, because they seem to somehow get you there. Having the goal is a massive thing, like just even if you don’t reach it by the deadline, having the goal is huge, because somehow everything seems to line up to start getting you working towards that goal.

Wesley Ray 1:06:55
Well, you don’t reach it when that time comes to try hard, harder, or at least I try harder, if I might, hey, I want to get 15 of this by Monday, and Monday comes, I might admit 13. Okay, how fast can I get to 15? I If I push really hard, I get to 15 by Wednesday. Okay, I hear you.

Bill Gasiamis 1:07:19
Yeah, good. So previously, you would have defined yourself as successful, I would imagine and happy.

Wesley Ray 1:07:27
Before the show, outgoing and social.

Bill Gasiamis 1:07:30
Yeah. How would you define yourself now?

Wesley Ray 1:07:33
Bridge struck, I had tons of people around me. Like, there’d be eight or nine people around me, like, at all times I went, I went on vacation, there’d be six, 810, of us going on vacation. I went to Disney World Two years ago, and I took my kids, my wife, my friend, her kids. Like I took I took my friends kids, and we all went to Disney World. Like, everything was a big group. I wanted everything to be a story, a memory, that you could tell and make.

Wesley Ray 1:08:10
Like, yeah, I didn’t care about the money. Like, okay, you want to bring your friend that’ll help you have good time. Okay, cool. Yeah. I will figure out a way to make it work.

Bill Gasiamis 1:08:24
How do you define that? Now, that type of you know, what makes you happy? Now? How do you define success?

Wesley Ray 1:08:31
Now, just trying to give as much time and be make the time go by as fast as possible, until my kids come back home school for the day. I’m like, Okay, it’s 11 o’clock, okay. I could go to the gym and blame my phone until 230 and then they’re home. Yeah, they come back on a Sunday night, Sunday so I’m like, Okay, I’m going to the bonus up on Thursday.

Wesley Ray 1:09:06
I’m going Thursday night, I’m going to see my old the people I used to work with. I haven’t been there in a long time. Friday, I have depart a Friday avatar appointment in the morning, then the podcast with you. Saturday, I plans to go do something. So it’s like, every day I’m just trying to, like, pass the day, yeah, so they come back.

Bill Gasiamis 1:09:29
But the circle is smaller now. There’s less people hanging around.

Wesley Ray 1:09:33
99% of people you I never saw again, like my best friend at the time, like he was always out of town with us. He he’d be boring cars. He’d stayed my house, like I remember when I went to Mexico, he stayed in my house with my kids to watch my kids, like he was always there. And then I had this truck and never saw him again. I was. Start to him, like, a year after a year, I was like, Dude, what happened?

Wesley Ray 1:10:05
And he was like, I have nothing to it’s all up, but I have nothing to offer. Offered you. I was like, I have no clue what that means. And so 99% of people disappeared, and the 1% that didn’t you would have never thought, Yeah, interesting.

Bill Gasiamis 1:10:25
That’s such a common so like the experience.

Wesley Ray 1:10:29
The friend that took the daughter to Disneyland a year or two, a couple years ago, they live a couple hours away. They’re not close, but since, since the struck, they’ve they’ve came and saw me a bunch of times. They came to the hospital a couple times me, and the one guy, he just came pick me up and took took me to Memphis for the night so we can see comedy show, and went to a casino, and all of that, like certain people have stepped up a lot, but it’s not the one George would have thought.

Bill Gasiamis 1:11:07
That’s always the way, always the way.

Wesley Ray 1:11:09
I thought my wife would be on this journey with me, would go through this together, yeah? She’s like, it’s too much.

Bill Gasiamis 1:11:18
Yeah, fair enough understand.

Wesley Ray 1:11:22
But you would you mess with you, because people are like you saw him. It’s too much. You’re too much like going places after the first hospital, I never got to go nowhere. Yeah, I was also it’s too much to take you out of the house. It’s too much for you to go now, so, as always, at home, book for months of and didn’t really go anywhere. And I remember it being around Halloween, and we went to a pumpkin patch and and she let me go, and I thought that they weren’t going like I got to the carpet, easy.

Wesley Ray 1:12:04
I got back easy. Like the Witcher on the gravel rocks was kind of hard for them, but because I couldn’t propel, because of my hand, I can’t I can’t propel, um, but I thought, like we had fun. The kids had a blast. I got to be included. I was really happy. We got home and I was like, I love today. Like, and she was like, today sucked. It was too much. I was like, damn.

Bill Gasiamis 1:12:37
Right, right, right, yeah.

Wesley Ray 1:12:39
So you get that in your head that you’re too much, you can’t go anywhere.

Bill Gasiamis 1:12:43
Yeah, you’re a burden.

Wesley Ray 1:12:47
Yeah, understand. It’s kind of like my little brother. He came randomly. He was like, hey, I’ll be there tomorrow. They just bought a Tesla, and so drove to the house. It was like, Let’s go somewhere. And I was telling him, I was like, I can’t. It’s too much for me to go anywhere. Like, I can’t. It’s like, Dude, I will pick you up and kill you outside and put you in the garden. We’re going somewhere. And so I remember we we got an escort. It’s really easy to go out there and get in this car. We’re getting this car. And all we did was go to Chick fil A, you know, and went to Walker.

Wesley Ray 1:13:29
And she bought me, like, deodorant and stuff. And just like, he’s like, here’s some snacks, here’s some candy. He’s he’s like, and the whole time, like he did this self driving the Tesla the old time, and never touching anything. He’s like, Dude, you can do this. You can do this. And he’s like, it’s not hard to take you anywhere, like, you legit walked out to the car with the walker.

Wesley Ray 1:13:57
All I had to do was pick the walker a bit folded up. Like, yeah, it’s not you’re not hard, it’s not bad. Yeah, that would have been the next day he took me to physical therapy and all that. And so then I started saying, like, okay, maybe, maybe it’s not so bad. Maybe it’s nice too hard.

Bill Gasiamis 1:14:18
Yeah, that’s good, man. That’s a a good contrast that you needed by the right person, and looks like the right person came along at the right time. Stroke affects everybody, obviously, not just the person who had the stroke. And you learn about other people so much when you in a very difficult situation and people have to make a decision, do they step up, or do they, you know, step back? You know, you know what happens. You really learn about people. And it’s kind of good that it teaches you about what’s deeply inside of people.

Bill Gasiamis 1:14:58
It comes to the surface and. The ones who were all good around for the good times only, they really get worked out really quickly so you can move on. You could just let that lesson come and then move on.

Wesley Ray 1:15:15
Like I said, I learned really quick, like I took the gets to Chicago for Christmas, and let them do all the tourist things and pretty much whatever they wanted to do. I let them do and, like, it was costing a lot every day, like, a whole lot, but I was like, okay, like, I can go to the bathroom by myself. I go to bed like a lot of things in Chicago were multiple level. As I can go up the stairs, I could go to the ice cream Museum. Yep, I can walk. I can do the museum like I’m not restricting us is helping us from anything. Then use the Witcher till the last day, because they forgot me.

Wesley Ray 1:16:04
I didn’t have medicine for that day. He got lost or something. So when the medicine worked, like, I couldn’t really do anything at that point, but, but I, like, I didn’t ask for, will they get any help? So I was like, okay, good. Like, I didn’t hold anybody back. It wasn’t a burden. Nobody had to help me, yeah. Like, it’s all good. Like, to me, I we had a blast. We would went to the slime Museum, went to the ice cream museum. We did all these things. We saw all the things in Chicago you’re supposed to see like, the big bean and the bull and all that, and like, they would get home.

Wesley Ray 1:16:50
And I’m talking about, I was like, like, I think I did really good. And my daughter was like, You did great. You did awesome. And my ex wife is like, I didn’t have fun. She’s like, it was too much. You walk up and putting a walker in the car. It got heavy after a while, I had to do other driving because you can’t drive. And I was just like, like, I thought I did good. Wow.

Bill Gasiamis 1:17:22
Talk about making it about her instead of you, like for that time, because most of the time she doesn’t spend with you, so you could have been, all right, all right, to kind of put her stuff on pause for a little while, just to make the exact family experience Okay, to make it about the kids.

Wesley Ray 1:17:39
And then it gives you, like, a false sense of reality. Like, I told Brandon my brother that that came, like, I told him I was, like, it’s too much me to go places. It’s too much my walk away from which is, like, digital workers, like, seven pounds, yeah. Like, I’m not worried about the walker.

Bill Gasiamis 1:17:57
Like, it just goes to show the difference in people’s behaviour.

Wesley Ray 1:18:03
My walk aways a lot. This is hard, this too much.

Bill Gasiamis 1:18:07
People cope differently. They manage difficult situations differently, and they have different levels of resilience. And, yeah, and it’s probably traumatic and emotional and all sorts of things. Well, you gotta see.

Wesley Ray 1:18:23
For me, it was like, Okay, I moved to here, and everything is close by. I can walk to target, I can walk to home goods. I can walk to Chick fil A, like I said, there’s a I signed up with the gym. That’s like a half half mile walk, yeah, and that’s what I did every day. I work out, sleep in because I have nothing to do, and it goes the day. So I sleep in and then be like, okay, the kids get on my 230 Okay, let me go to the gym. Get busy, even if I take my time and I play on my phone. Have to tell me the gym, at least I’m there doing something.

Bill Gasiamis 1:19:01
Yep. So joining me on the podcast, what was the point of that? What was the purpose to help other people, get the message out there, encourage people.

Wesley Ray 1:19:11
I know there’s a lot of curiosity. Like when I started watching a podcast, I just wanted to hear people like the recovery process. Like, wanted to hear people what happened when they started it, and where’s that now, I really wanted to hear people’s experience with a tenor set curiosity, best stem cells, but I don’t think I ever heard that on your podcast, but so I was like, Okay, I get both. I got attorney said and stem cells, yeah, and doctors told me what, I will never recover. And I have I’m not perfect, yep, not, I’m not. Stopping either.

Bill Gasiamis 1:20:02
Yep, the recovery keeps going. Everything continues.

Wesley Ray 1:20:07
And you hear that a lot like, Oh, you have six months, you have one year, you have to get better. After that it stops. Yeah, no. I just went to a one year for me was in March. I just went to, I just upgraded to the game a month ago. I’m trying to do puss up, not the gym. At the gym, I can almost do everything I can. I did the wrong machine. I get on the treadmill like, Yeah, I’m trying.

Bill Gasiamis 1:20:42
Yeah, you’re doing a great job, man, if you could share one lesson from your stroke journey with somebody who’s been newly diagnosed, what would it be?

Wesley Ray 1:20:54
Just don’t give up. Make short, obtainable goals so you keep, keep going forward, forward. Don’t like, I know you have this drug in there, but it’s like, I want to walk. I want to walk. Want to do this that’s too far away. There’s so many short things you can focus on to help you get there. Like, so for me, it was, I want to be able to feed myself. That’s That’s simple. I can do that. I want to be able to go upstairs with a hand rub, like nasty. I want to be able to do push ups, like short, obtainable goals.

Bill Gasiamis 1:21:41
And then they stack up, they become big wins over a long period of time, yeah.

Wesley Ray 1:21:47
Then you look back and you’re like, Okay, I got it. It’s intercept, okay, I got this stem cells, okay, I got this Tesla, okay, I need something now to work for it. Okay? Now what to do? To push ups like, it never stops, yeah, it’s always something obtainable that I know I can get to. Versus like, hey, I want to get better. It’s too broad. You can’t, you can’t measure that.

Bill Gasiamis 1:22:19
Yeah, it’s too broad? Yeah, you have to focus on something small, measurable, attainable, and then stack that up many, many small, measurable and attainable things make a big improvement.

Wesley Ray 1:22:32
And see when they get to the hospital, they said that a lot though, like, like, the therapist and the doctors that came in, they’re like, because there’s a bunch of us there and they’re, like, if you go and ask people their goals or what they want to achieve and accomplish with you, like, the aiming for the moon, it’s all like, a big part spectrum. So like, but you have short things that you can measure and get there fast. And then you you have steps like, yeah, you’re not trying to get to the top of the mountain. You’re trying to get to the next step.

Bill Gasiamis 1:23:11
The next step, yeah, you rack up the winds, and then you look back to see how far you’ve come. You reflect, and then you focus on the next step. And it’s always it’s like the what’s the first next step, rather than Yeah, how do I get to the top of the mountain? It’s overcome the challenges as they appear. Don’t try and work out what all the challenges are, because there’s too many of them.

Bill Gasiamis 1:23:34
Just the ones that you need to work on are the ones that appear in front of you, and for you, you work on those you got results. You proved people wrong. You were encouraged along the way. Some people didn’t turn up, some people left, others stepped up. And here we are. We’re talking on the podcast. You’ve had a tenner set. You had a good result. You had stem cells. Yeah, not so bad. Maybe something’s going to happen later.

Wesley Ray 1:24:00
These stem cells. I’ve had friends. I’ve had multiple friends get them for, like, some injuries and like joints to make them feel better and stuff like that. And they, they loved it and sore very obviously, I can, I can’t really feel the left side, so I can only feel half anyway. So it might be working on this, I don’t know, yeah, but one of the, one of the main things that they told me about this stem cells, is it takes a while. It’s not like the antenna said, where they give you the shirt, and it works. It works or doesn’t.

Wesley Ray 1:24:37
Yep, the stem cells there’s like, they were like, they were, like, it could take five or six months, like, everything is slow, and so I’m at the one month mark. Yeah, I’m glad I tried. I don’t feel it. Feel it right now, but I’m glad I tried it, because if I didn’t out in my head, I would be like, what happened if. I didn’t try it, or what happened if I would have tried it? The same thing with the thinner set, when they got the second shot, I was like, a big part of me was like, I shouldn’t get the second shot. It sounds like waste of money. And I was like, okay, but if I don’t get it, I’ll always think, what if?

Wesley Ray 1:25:21
So again, but I did because I think it, it did a lot more than the first shot for what I wanted. The the first shot helped, but the second shot did a lot more noticeable things that I could notice. Yeah, if I could do it all again instead of right now, instead of the stem cells, I would have got a third shot of between etanercept, okay, cuz they’re about the same price, so I’d rather gotten the third shot of 10 or six, and that might now okay.

Bill Gasiamis 1:26:05
I really appreciate you a reaching out. I’m so glad my podcast has helped, and that you found some things to go after when you listened. Thanks for joining me and sharing your story. I really appreciate it. I love your attitude. Thank you. I wish you all the best in your recovery.

Wesley Ray 1:26:21
Hope is a powerful thing.

Bill Gasiamis 1:26:23
Yeah, man.

Wesley Ray 1:26:24
Just keep hope.

Bill Gasiamis 1:26:28
Thank you, man, thank you for joining me. I really appreciate it. Thank you. Thank you. Well, thanks again for tuning in. That’s another episode done. Remember you are the hero of your recovery. My job is to simply guide you with stories, strategies that prove recovery doesn’t stop, unless you stop. If today’s conversation with Wesley Ray inspired you, here’s how you can take the next step. Grab a copy of my book The UnexpectedWay That A Stroke Became The Best Thing That Happened. Just visit recoveryafterstroke.com/book.

Bill Gasiamis 1:26:59
You can join my patreon community and help me get to 1000 interviews with stroke survivors. You can subscribe on YouTube Spotify or Apple podcasts so you don’t miss future episodes. And before we wrap up, let me remind you, if you’re struggling with hand function after stroke, the Hanson rehab glove by so Rebo, distributed by Banksia tech, could be a game changer.

Bill Gasiamis 1:27:22
It’s designed to help improve movement at home, you can keep making progress between therapy sessions, and if you want to check it out, you’ll find the link in the description. I’m Bill Gasiamis. Recovery is about showing up, doing the work, and refusing to quit. That’s how you win the day. I’ll catch you in the next episode.

Intro 1:27:42
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:28:12
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice, and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:28:37
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

Intro 1:29:04
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The post Etanercept Stroke Recovery: Wesley Ray’s Relentless Comeback appeared first on Recovery After Stroke.

Karen Quigenden lived an active and full life on Queensland’s Sunshine Coast. At 47, she was working in community care during the week and spending weekends at rodeos with her youngest daughter. Horses, long days, and caring for others defined her lifestyle. She considered herself healthy, fit, and unstoppable.

But everything changed one ordinary day while driving home from work.

Karen began to feel strange behind the wheel. Her right hand stopped working, her mind clouded, and her car drifted across the road. Police noticed her erratic driving and tried to intervene. In a moment she’ll never forget, she crashed into their vehicle before collapsing.

Ambulance crews, firefighters, and eventually a helicopter rushed her to Brisbane’s Princess Alexandra Hospital. What followed was the shocking diagnosis: a hemorrhagic stroke.

In disbelief, Karen thought, “I’m only 47. I’m too young for this.” Doctors explained recovery wouldn’t be six or eight weeks like a broken bone — it would be measured in months and years.

Karen spent weeks in the hospital, adjusting to life with her right side weakened and her speech impaired. Nights were sleepless, surrounded by the noise of other patients. When she was finally moved into her own room, it was the first chance to think clearly.

Rehab at Sunshine Coast University Hospital became her full-time job. Hours in the gym each day tested her body and her patience. She often described hitting a “brick wall” of fatigue — no matter how strong her will, her body forced her to stop.

Through it all, she missed her youngest daughter deeply. “The hardest part wasn’t the physio,” Karen recalled. “It was being away from her.”

Years later, Karen heard about Dr Edward Tobinick in Florida and his off-label use of etanercept stroke treatment. The idea sparked hope but came with a heavy price tag — around $30,000 AUD. Determined, Karen sold her farm, booked the trip, and flew halfway across the world with her daughter.

In Dr Tobinick’s clinic, she was tested with tasks like drawing a clock, then received her first injection. At first, she noticed nothing until a mirror revealed the return of her dimple, a facial feature lost since her stroke.

Other changes soon followed:

• Normal sensation inside her mouth
• Relief from constant neck pain
• Clearer thinking and reduced brain fog
• A lighter feeling in her leg and improved mobility

By her third injection, improvements were undeniable. Karen described the difference as “going from kindergarten to grade two” in her ability to perform tasks.

While Dr Tobinick’s stroke treatment gave her a breakthrough, Karen also credits ongoing rehab tools. She regularly uses the Syrebo Hanson rehab glove, distributed by Banksia Tech, to improve hand function.

“It opens and closes my hand, stretches it out, and makes a real difference,” she explained. “I use it every week.”

Karen has reclaimed independence — even regaining her driver’s license. Now she can support her daughter at rodeos again, this time from the passenger seat or the sidelines.

Her biggest lesson? Recovery takes time, but progress never stops.

“Just keep going. There’s no date where you’ll suddenly be ‘back to normal.’ Recovery keeps unfolding in its own time.”

Karen’s story shows how stroke recovery is rarely a straight line. For her, exploring new treatments like Dr Tobinick’s stroke treatment provided hope and tangible improvements. Combined with consistent therapy and the right rehab tools, she continues to move forward.

If you’re on this journey, remember: you’re not alone, and your story is still unfolding.

Get my book The Unexpected Way That a Stroke Became the Best Thing That Happened

Support The Recovery After Stroke Podcast on Patreon

“Recovery has no deadline — but you’ll get there. Just keep going.” — Karen

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 dramatic stroke at 47, Karen found hope in Dr Tobinick’s treatment — and discovered recovery can keep moving forward.

Highlights:

00:00 Karen Quickenden’s Background and Lifestyle Before Stroke
07:18 The Day of the Stroke
13:56 Hospital Stay and Initial Rehabilitation
26:33 Discovery and Decision to Seek Treatment in Florida
35:32 Experience at Dr. Tobinick’s Clinic
43:23 Post-Treatment and Ongoing Recovery
55:01 Impact on Family and Daily Life

Transcript:

Bill Gasiamis 0:00
Hello and welcome to another episode of the recovery after stroke podcast. Before we dive in, I want to thank all the patreon supporters who make this possible. Your support helps cover the costs of hosting and producing this show, and after 10 years of doing it on my own, I can now keep creating content for stroke survivors who need hope.

Bill Gasiamis 0:20
Thank you also to those who buy my book, leave reviews on Apple podcasts and Spotify, and everyone on YouTube who comments and doesn’t skip the ads. You all make a massive difference. Today’s guest is Karen Quicken. Then she was just 47 when a hemorrhagic stroke struck while she was driving, leading to one of the most dramatic rescues I’ve ever heard.

Bill Gasiamis 0:44
Police, fire and an ambulance all working together. Her journey didn’t stop there, from months of rehab to selling her farm and traveling across the world to Dr. Tobinick’s clinic for three shots of etanercept. Karen’s story is one of courage, risk and surprising breakthroughs. And before we begin, a quick thank you to Banksiatech, distributors of the Hanson rehab glove by Syrebo.

Bill Gasiamis 1:11
The glove is designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about how Karen uses this exact glove later in the episode. Now sit back and relax and enjoy our conversation. Karen quickendon, welcome to the podcast. Thank you. Thanks for being here. What was life like for you before stroke? What did you do? How did you get it by your day? What you got all your hobbies.

Karen Quickenden 1:44
What did I do? I went to work Monday to Friday, and I spent the weekends at rodeos and barrel races and all that type of stuff. I did some split shifts, which allowed me to be home in the middle of the day. So there’d be a lot of dealing with horses then. And my daughter, at the time, is still at school, and she’d get home from school from for the day and have some to eat and then start working on horses.

Bill Gasiamis 2:22
Rodeos that’s a massive Northern Australian thing. We don’t have rodeos in Melbourne. I’ve never heard of a rodeo, I’ve never seen a rodeo, I never knew they existed in Australia. Where do they do rodeos, and how often do they do them? If you were there all the time.

Karen Quickenden 2:38
Probably about every second weekend, or every weekend they’re all over. They’re from Rourke right through to the top end.

Bill Gasiamis 2:52
Uh huh, and how did you participate? Did you just turn up and spectate? Or were you guys participating them?

Karen Quickenden 2:58
My daughter rides yeah. She rides in it. She does the barrel race, which is the three tins. And you go around the three of them in a.

Bill Gasiamis 3:11
Figure eight?

Karen Quickenden 3:11
Yeah, type of thing, yeah.

Bill Gasiamis 3:14
Okay. And then they’ve gotta do it the quickest, so it’s up, yeah, yeah.

Karen Quickenden 3:19
So she she does that, and she does steer and decorating, yep, and she does a broken tie.

Bill Gasiamis 3:29
So, you know, you know, when a horse doesn’t do well, or when the team doesn’t do well, do you sometimes get the riders going? Oh, the horse is terrible. This horse doesn’t know what to do. And then vice versa. Does the horse ever complain about the rider?

Karen Quickenden 3:43
No, the horse doesn’t complain. She’s really lucky. She’s got some really amazing horses, so she doesn’t really complain that much. She blames herself. So that’s good.

Bill Gasiamis 3:57
It’ll wait. She’s learning how to take responsibility.

Karen Quickenden 4:00
Yeah, yeah. She’s turning 19 on Sunday, so it’s been three, three and a half years of going out there and getting things for herself. Why I do rehab.

Bill Gasiamis 4:19
All kinds of rehab. So what was your kind of work? What work did you do through the week before the stroke?

Karen Quickenden 4:26
SB Care, which was South Burnett Care, so I’d care for all sorts of people.

Bill Gasiamis 4:35
like Disability Assistance, that type. And that meant that you spend time in people’s homes, go in check, in on them, etc. Yep, that’d be me, yeah. Fair enough. Your family. What’s that like? Is just you and your daughter, or is there others?

Karen Quickenden 4:52
No I’ve got two older daughters, Tamasha is 30. She. Runs vet clinics in Brisbane, and she’s doing her own thing. She’s a lovely girl, lovely. And Danica is 29 on the first of August, and she’s happily married, and three little girls.

Bill Gasiamis 5:19
So it’s lovely. So you got two that are totally independent out of the house, even become moms, and there’s grandkids running around and everything, and then you’re still caring for your daughter, you know, in her last sort of few teenage years, or she’s about to fly the coop.

Bill Gasiamis 5:41
Life’s pretty full on. It’s exciting, and it’s amazing, and you’re doing things that you love, and it’s a really active lifestyle, yes, yeah. And up in the Sunshine Coast, in the northern part of Australia, you know, there’s more sun, there’s more warmth, there’s a lot of outdoor stuff that’s happening.

Karen Quickenden 6:00
Yeah, there is.

Bill Gasiamis 6:03
Rodeo every second week.

Karen Quickenden 6:05
About every second week, yeah, yeah. Very cool. We go to barrel races midweek and, do all sorts.

Bill Gasiamis 6:16
Did you have a sense of the condition that your body was in? It with regards to your health. Did you? Would you have described yourself as somebody that was healthy, fit, and all that kind of stuff?

Karen Quickenden 6:26
Oh, yeah, healthy fit. I just did what I had to do.

Bill Gasiamis 6:30
Yeah. How old were you at the time?

Karen Quickenden 6:37
I was 47.

Bill Gasiamis 6:42
So you were a young mum, if you’re 47 at the time, and you’ve got kids that are near their 30s, you were a young mum.

Karen Quickenden 6:50
Yeah, yeah.

Bill Gasiamis 6:54
Wow, that’s so cool. So then I can imagine, at 40 ish, you’re still full of energy, real fit all over, running around, doing all sorts of things.

Karen Quickenden 7:04
Yeah, yep, I get up from about six in the morning. And you know, there’ll be some days where I’ve finished work at seven o’clock and, you know, get home, find out which horse has done what. Yeah, it was good. It’s real good.

Bill Gasiamis 7:24
So what happened on the day of the stroke? Do you have any recollections of what that day was like?

Karen Quickenden 7:29
Yeah, it was like a normal day. And I’d been to two clients that morning and and I was driving back into town, and I thought, Oh, my stop. It will worse. And then I started feeling really funny, and I thought, no, blow it. I’ll just go home. And I started going home, and I pulled up that these set of lights, and I was looking around, trying to work out what, what was wrong, and I still didn’t get it.

Karen Quickenden 8:03
I drove forward and kept going, and then I went, something submits, something’s gone really funny. And I pulled over, and then I realized that my right hand wasn’t working. And I thought, what, what’s wrong? And then I thought, oh, righty, oh, keep going. I’ll, I’ll get home. Dad will know what’s wrong. And and I went down and went around a big roundabout, and I started heading out at an old Creek Road.

Karen Quickenden 8:40
And yeah, apparently the police had spotted me. It really like it’s funny for police to see me, and I was all over the road and and the police were behind me, and they come up beside me. And they thought, this girl, there’s something wrong, like she’s not just drink driving or anything like that. There’s something really wrong. She’s not seeing us.

Karen Quickenden 9:14
They got in front, and I sent him again, and I thought, Oh my God, what’s what’s wrong with me? I can’t stop the car and and then they stopped in front of me, and I went, boom, straight up the bathroom. And I thought, Oh my God, and he couldn’t get in the front of my car. And I thought, what’s going on? And then he got into the back of the car, and I just thought, oh, okay, well, I’m going to sleep.

Karen Quickenden 9:50
And then I don’t remember anything from then, apparently, the far. A was there, the ambulance, and everything was there. And I woke up in Kingaroy hospital, and I was just laying in the hospital, couldn’t speak, and I was laying there, and I looked around at everything, and I thought, What are they doing to me? Like and I looked over to the right, left hand side, and my daughter was standing there, and she was crying and crying, crying, and I couldn’t even ask, what’s wrong with me? What just happened? And yeah, it was, oh, big things from then on.

Bill Gasiamis 10:47
We’ll be back with more of Karen’s remarkable story in just a moment. But first, the sponsor of today’s show is Banksiatech.com.au, proudly distributing the Syrebo Hanson Rehab Glove, a soft, robotic love that helps stroke survivors exercise and improve hand mobility at home, whether you’re regaining function or preventing stiffness, it’s a practical tool that makes rehab accessible.

Bill Gasiamis 11:13
You can learn more and order even internationally. At Banksiatech.com.au, I love being able to share these kinds of solutions with my listeners. They are the perfect sponsor, because they’re real products. They can help stroke survivors keep moving forward.

Bill Gasiamis 11:31
Now, back to Karen’s story and her decision to travel overseas for Edward Tobinick’s etanercept stroke Treatment. My God, the cops are involved. The fire is involved, yeah, and bows are involved, yeah, that’s the most dramatic stroke experience that I’ve ever heard. I mean, yeah, all of them are ridiculous and shocking, but even that one, when you’re driving and people are trying to help you while you’re in a car, yeah, they’re trying to stop the car, and you run into the police car.

Bill Gasiamis 12:05
Oh, man, that is so dramatic. And I can’t believe like that would have been almost like one of those slow motion, hot pursuits, you know, where they’re chasing after a car, but, yeah, where they’re chasing after a car, and the person’s going really slow, but it’s like the most cute, high speed chase ever. Yeah, you’ve woken up in hospital. Paper are around you. You’re they’re everyone’s trying to work out what’s wrong. When’s the first time you’re noticing or you become aware that you’re unwell, it’s you that the problem is and you’ve had a stroke.

Karen Quickenden 12:41
Yeah, well, I still didn’t know what it was at Kingaroy. I knew that there was, it was me, and like, I went back out to her then, and then I woke up, and they were putting me in a helicopter, and I remember looking at the faces of the guys, and I’m thinking, Where am I going? But I couldn’t ask, so I couldn’t say anything. And I thought, alright, okay.

Karen Quickenden 13:11
So got in the helicopter and went back to sleep, and I woke up as well coming down in Brisbane, and I just remember going like this, and the guy grabbed me a vomit bag and everything, and because I hadn’t eaten all day, like, like, where’s the food? I’m hungry. And, but I couldn’t ask, and and I vomited, and had a look around, and I thought, oh God. And I went back to sleep, and I landed in the PA.

Bill Gasiamis 13:57
Prince A. PA which hospital is that?

Karen Quickenden 14:00
Princess Alexandra? I think it is. And, yeah, they took me in there, and they opened my eyes, and I saw everyone around the room all in their whites, and I thought, Holy hell, this is real. What’s going on? And they gave me needles and all sorts. They took me into theater. They did what they had to do.

Karen Quickenden 14:28
And then I woke up in the room at midnight, and I looked and tamisha and Danica and Mitch with were there, and I looked at him, and I went. And they went, oh my god, Mom, you’re awake. You’re okay. And I said, like, but my voice wouldn’t let me talk. And and a nurse come in and said, Alright guys, it’s, it’s midnight, you know, let your mother sleep now.

Karen Quickenden 14:58
She’s awake, you know. She. Is okay, and I went back to sleep, and I woke up the next morning and my right arm and leg were just, just there, and I’m like, what has gone on? Oh, really. Like, this is not funny, and the doctors and that come around. And they started talking to me, and I said, book. And they said, Oh, that’s alright.

Karen Quickenden 15:30
And they went through and you, they’ve gone, Karen, you’ve had a stroke. And I went, me, and they’re going, Yes, you have and I said, No, I’m not like I think I got out old enough. And they said, Yes, you are. Everyone can have a stroke. It happens to everyone any age. And I’ve gone, whoa. And I asked six weeks, eight weeks, how they they said, Oh, you want to know how long it takes us. And they said, How long is the piece of string? And, oh, my God, I cried.

Bill Gasiamis 16:18
You’re hilarious. Oh, so even in that moment, you’re in denial. Firstly, day two, right? They tell you, you have a strike, fair enough. That’s, you know, I’m 47 I’m not old enough to have a stroke. That’s cool, denial. And then immediately, like, six weeks, eight weeks, 10 weeks, like it’s a broken bone, you they’ll give you a timeline you’ll work towards that you’ll be back on on board and, yep, back to normal, quote, unquote, normal life.

Bill Gasiamis 16:48
Yeah, yeah. That would have been hard to handle so that that’s day two. You’re already thinking about your recovery and how quickly you can go back to your yes, what? Yeah, it’s like already there. These guys are breaking your heart. Yeah, yep, spend in hospital.

Karen Quickenden 17:09
I spent three weeks in Brisbane, and I was getting cranky because you’re in a room, and there’s four beds, and, you know, it’s pretty disturbing. It’s, you know, like people in there for different things, stroke different, it’s all different. And everyone’s trying to, number one, realize what’s going on with them. And then you got the person in the next bed who’s tied down to the bed and trying to, like they’re filling him up with all sorts of medication and and then you got the guy across from me.

Karen Quickenden 18:08
And you know that there’s people, everyone’s got their own thing. And you know, you get woken up about three times a night because the guy crosses, having a medical episode, and, and you’re like, you just laying there, and you’re just thinking, oh my god, please do something, you Know, Like, so they, they organized my own room and, and that was heaven.

Karen Quickenden 18:44
That was the first night of sleep. And like it was just me. I could think. I could, you know, think about everything and, and it was just me in that little room. Didn’t have to worry about anyone else. And then they came in and said that the kiwana Hospital, which is University Hospital on the Sunshine Coast, is ready to have me. And I said, yeeha, so rehab hospital, yeah, it was the best.

Bill Gasiamis 19:27
So, you know, when originally you went to King ARoy, how close is that to your home?

Karen Quickenden 19:34
At the time I was living out there, it was about 15 minutes?

Bill Gasiamis 19:40
Okay, so king of Roy was the sort of small hospital out of in the middle of nowhere. You guys all lived on your farm and played on your horses. It wasn’t equipped to handle a stroke patient, so they flew you almost what, two hours away by car. You. About three hours to Brisbane, yeah, yeah. So they flew you to the nearest hospital that could handle your stroke, the situation that you were in, and then also, then you went to rehabilitation. Yeah, was that somewhere near Brisbane?

Karen Quickenden 20:18
It was, it’s about two hours, oh, about an hour and a half away from it. Yeah, closer to home. Yeah, well, it’s probably about the same distance. And, I mean, it was home for, what, three months, four months.

Bill Gasiamis 20:40
So you spent time there, and that’s what I’m trying to get my head around. Now you’re away from home, yep, family, yep. It’s really inconvenient, technically, to be where you are. Were they around? Were they able to be there for you?

Karen Quickenden 20:54
Well, Tamasha lived in Brisbane, so when I was in hospital in Brisbane, she was there every day. She’d bring a work with her, and I’d wake up and she’d be there and and we would start talking on a a blackboard. And I remember one day I was trying to say something, and and I and she said, What? And I said, No. And we started laughing.

Karen Quickenden 21:28
And we just like, come on, fix it. Like, start working. It’s only your voice. And then the day that I came back to Sunshine Coast was a Thursday night, and she was in there and got me organized, and the ambulance come and and brought me up to hospital. And then it was danica’s turn. She had two kids then, and they were wonderful.

Karen Quickenden 22:04
They would like, I’d have a a daily routine of what I had to do, and I was awake at eight o’clock ready to go down to the gym room, and I’d go all day. I’d get time off for lunch, and then they take me back down, and I’ll do something else, and like I will work in the gym from eight to 12 and then from one to three in a day. And I was had it. I couldn’t understand the the mental side of it, like it was like, I wanted to keep going, but the body was saying, I gotta stop, yeah. And I wasn’t used to that.

Bill Gasiamis 22:57
Fatigue and exhaustion right? Just gone, and no matter what you wanted to do, it was no doing it. That was it. It was just done. Yep, I know that feeling. It’s like you hit a brick wall. And lots of people have said that to me, I hit a brick wall today, but I’m like, feeling like I actually smacked into that thing at an hour, and it was solid, and it didn’t move an inch, and it just it put me on my and that was it.

Bill Gasiamis 23:24
And until I sit down and rest and recover, there is no getting back up and doing anything. Yep, yep. I know that. So in this three month like you seem very happy, go lucky, quite chirpy and cheerful. Did you have your downs as well?

Karen Quickenden 23:42
Yeah, I did.

Bill Gasiamis 23:43
What was that like? What were the parts that kind of upset you?

Karen Quickenden 23:48
Um, oh, God.

Bill Gasiamis 23:55
Like they still do, right? I understand.

Karen Quickenden 23:57
I think the biggest thing was my daughter being in home. And I couldn’t be there for her.

Bill Gasiamis 24:23
Yeah, the youngest, You’re home alone.

Karen Quickenden 24:29
She was at home with my dad. Yeah, she was.

Bill Gasiamis 24:40
She seems like, though, if she grew up around you and her sisters, that she would have been quite the independent kid, and nonetheless, you’re thinking about her going through it on her own, kind of without you and without anyone attending to her.

Karen Quickenden 25:02
Yeah, yeah. I mean, you know, my dad was always there, but you know what? That’s like? Dad’s a very, um, very different to mum,

Bill Gasiamis 25:24
supportive in a different way. Yes, yeah, they are not mum. And definitely she’s thinking about mum actually being unwell away, and you wanted to kind of prove to her that you’ll be right, that everything will get better, but you couldn’t do that because you were in a hospital elsewhere,

Karen Quickenden 25:45
fighting the battle.

Bill Gasiamis 25:47
So your rehab and your recovery, what were you trying to get back? Obviously, your voice and then, yeah, your right side of your body. What parts of the right side of your body were offline

Karen Quickenden 25:59
the lake and right up the, you know, my chest and right up to the shoulder, the neck, the arm, everything. Everything was down.

Bill Gasiamis 26:16
Where are they now, after nearly, what, three years,

Karen Quickenden 26:20
um, in three years. It’s come a long way, but it’s like anything, um, it would take time. Yeah, time I don’t have. Well, I do. I’ve lost the time. Um, I went over to Florida in

Bill Gasiamis 26:43
February. Yeah, tell me about that. Oh, what a

Karen Quickenden 26:48
magnificent if you look at my face, I have a dimple back.

Bill Gasiamis 26:54
Oh, my God, you went to Florida and you got a dimple.

Karen Quickenden 26:59
I couldn’t care about anything else, but he showed me a mirror, and I looked and I went, my God, I got a dimple.

Bill Gasiamis 27:10
So you’re talking about Doctor, tobernik, right? Yes, that’s him, okay, so this is interesting, right? We have mixed responses. People go to tobinick and they get no result because of the condition doesn’t support the medication, etanercept doesn’t help a particular person, and yeah, or that person ends up being disappointed and dealing with all sorts of things, right?

Bill Gasiamis 27:36
We totally get it, and then we get other people who just rave about it and think it’s amazing. And everyone hears those stories, and then goes there with hope that they will be one of the lucky ones, right? We’ll call it. So you went there, but it didn’t miraculously fix everything.

Bill Gasiamis 27:53
You’ve got your dimple back. I understand that that is really important. My wife has got one dimple. She’s always had one dimple, yeah. And I kind of always ask her, where did the other one go? Has it been relocated? Where is it? Anyhow? You obviously are attached to your dimples. You very fond of them, right? So when one disappears, you notice.

Karen Quickenden 28:16
I notice the dimple the inside of my mouth, which I didn’t think anything was wrong. There was cos I said to him, it’s gone. And he goes, what I said, thing in my mouth. And he said, What’s it feel like now? I said, normal. It feels normal. And he goes okay.

Bill Gasiamis 28:46
Inside your mouth as a as a result of the stroke, you had an strange feeling, yes, on the inside of your mouth, on the right side as well.

Karen Quickenden 28:54
And it was gone. I was like, Oh, thank God. I didn’t even know it was there. But after having the injection, I was like, wow, that’s that’s great, and I got no pain in my neck that’s all gone. I can lift my arm up. I’ve got no pain on my left side, in my ribs or anything like that. Down to my hip, my leg is getting stronger and stronger up the top, top of the leg, and yeah, it’s, it’s moving around. It’s still, to this day, I’m finding things are always getting better.

Bill Gasiamis 29:54
Alright, how long ago was this trip to in this February? Okay, yeah, so February. 2025 it’s been now, and now we’re recording in July, 2025 so it’s been about six months. Yeah, okay, and can you tell me a little bit about how you found out about it and what made you go? Let’s talk about the discovery of the etanercept treatment. For stroke survivors. How did you discover it?

Karen Quickenden 30:27
I had a worker out at Kingaroy, and she rang me and she said, I’ve got a stroke client. And I said, Oh, yeah. And she said, she only had her stroke six months ago or something, at the time of the phone call. And I said, Yeah, how’s she going? She goes, no good. She’s like a husband saying She must not get out of the chair. She must not do this, do that, so she doesn’t do anything.

Karen Quickenden 31:07
I said, Oh, that’s not good. And she said, yeah, she’s not you. And I said, Oh, okay. And she said, I want you to look this up for me and see what you think, because this lady is going for it, and I think you benefit from it. I said, okay, and she gave me his name and everything, and I had a look and recessed as much as I could. I went to my parents and told them about it, and and, of course, when it come down to the money side, they were just like, really? They didn’t know what to say.

Bill Gasiamis 31:48
Because it’s a lot of money, right? They’re thinking, yep, heaps of money. What are you going to do? You’re going to go over there, blah, blah, blah, the usual thing that people think of, right? What? What’s the money amount in Aussie dollars. What would it cost?

Karen Quickenden 32:01
I think it’s about 30,000 it’s a lot of money, yeah. And so I had to go through, selling the farm, selling everything, getting the money for it. And, you know, I I did all that, and we went around my oldest daughter, and I told her about it, and she goes, yep, so when are we going? I said, right, I’m going. You said you’re going, I’m gone.

Karen Quickenden 32:38
And I booked and we are up at three o’clock one one night, and had a phone call with him, and it was like, this isn’t happening. And I said, I can’t believe that I’m going like, I’ve got an opportunity here. It better work. So we booked a holiday as well. We booked we saw the Bahamas, all sorts. Okay, we did all sorts. While we were there, I tried to do everything or possibly could.

Bill Gasiamis 33:23
Why not? You may as well. You’ve gone so far. Yep, traveled halfway around the planet. You may as well. Now, in those initial conversations with Doctor Toby Nick, do you get a sense of you also might not get a result? Does he let you know that there is a possibility that it might not work? Yep, but he take that news like, if he’s upfront and says that, how do you take that news, knowing I’m going to go there, I’m going to drop 30 grand, and then it might not work. How do you deal with that?

Karen Quickenden 33:53
I don’t know. I didn’t think about it. I was on a high, I suppose. But I think planning as if we were going on holidays was probably a good thing because we were, you know, Tamesha has everything down to the tea. And I thought I don’t know if I’m going to follow your routine, but I’ll try.

Bill Gasiamis 34:38
Yeah, because you’re probably also thinking about being exhausted and all the stuff that you have to deal with. But you and her, I mean, at her, her age, like, you know, just before 30 and you at 47 you guys are like sisters more than anything. Yeah, all the time. So it’s very high energy, very full on.

Bill Gasiamis 34:58
And then you guys do the deal, so to speak. You know, you have your chat with Toby, Nick. Toby, Nick tells you all the pros and cons. You make an informed decision, and then you go, I’m off. You also book a holiday so you can make the most of it. But you get to Florida, and then you go to the clinic, yep. Tell me about how that goes for you. What is that like?

Karen Quickenden 35:20
It’s it was like, Well, this is my turn. And, you know, you, you go in there, and the staff are amazing. They’re really positive, nice, general people, you know, like, yeah, they were, they were great. And they took us into a room and did little tests on me. Like, the one that sticks to me is, can you draw a clock?

Karen Quickenden 35:56
Yeah, so do the outside you’re doing the numbers and and, can you place the hands at 10 to 11? I said, yep. And I did all that and everything else that they asked me, and I gave it to them, and they took me in, gave me the first needle, which you put your head down, puts the needle in, then swings the chair up, and you’re laying back for 10 minutes, I suppose, and they’re talking away, having their own conversation.

Karen Quickenden 36:32
And I’m laying there and I’m thinking, huh, what’s happening? Like, yeah, and if it’s flips me back up and says, Can you feel anything? And I said, No, it wasn’t until he put the mirror in front of me that I could see it all happening. And I went back for the second needle at a week’s time. They didn’t do much of investigation. Against me.

Karen Quickenden 37:03
Then it was sort of like, just let it do its thing and see in a week. I said, okay, and I go back for my last one. And they said, we’ll get you to do a a clock again. And I said, Yeah, no worries. And I did it. And I did it perfectly. And they showed me the one that they first got me to do. I went, Oh my God. I said, I didn’t do that, did I? And they said, Yes, you did. I went, Oh my god. It was like looking at a child in kindergarten doing a clock, and then looking at a now, she’s in gray too, looking at her clock. It’s so different.

Bill Gasiamis 38:00
You didn’t happen to take a photo of it. Did you?

Karen Quickenden 38:06
No, I didn’t

Bill Gasiamis 38:09
You know that first week, were you noticing things improving? Did the pain in your neck go and so you noticed the first lot of difference happened quickly, as well as the dimple?

Karen Quickenden 38:21
Yep. And even my leg felt lighter, because it feels quite heavy, yeah, it felt lighter. By the time I had the third needle, I noticed that my hands, I couldn’t touch it. I couldn’t do that. Everything is just improving all the time.

Bill Gasiamis 38:46
Yeah, that’s so good after the second needle. Was it more subtle the changes? Or did you have, like, big changes, big notice?

Karen Quickenden 38:58
Probably not. I don’t think. But there was nothing to really report, though, like it was just, I felt the same. Dimple was the same. It probably wasn’t till the third needle that I started to notice big changes, like, you know, the dimple was definitely there. It wasn’t going anywhere.

Bill Gasiamis 39:31
So the third needle happened a week after the second one?

Karen Quickenden 39:36
Yep, yep,

Bill Gasiamis 39:40
Wow. And then you started to feel even lighter. What happened?

Karen Quickenden 39:45
Yep, it was funny, because the hand, like the shoulder, everything feels really good, but I say, you know, why won’t it work? Okay, you know. And they’re like, well, it takes time, so keep working at it. And I said, Okay, I’ll keep going.

Bill Gasiamis 40:12
So you know, with with your stay, are you staying nearby, an accommodation near there the whole time,.

Karen Quickenden 40:22
Yeah, we stayed at.

Bill Gasiamis 40:27
And in that time, are you, do you have access to the to the clinic if you have any questions or any problems or challenges?

Karen Quickenden 40:34
Yeah, yeah, definitely.

Bill Gasiamis 40:35
And since then, has there been any follow up? Do you check in or touch base with anybody about anything

Karen Quickenden 40:43
They did. Four weeks after I got back, they sent me an email, and I sent back, and they said, well, good luck, and they’ll talk to me in February, see how I’m going.

Bill Gasiamis 40:58
So there’ll be a follow up at some point just to check in. Yeah. Do you think any of it has eased off? Any of the improvements have eased off, or they all still basically the way they were?

Karen Quickenden 41:12
No, like, even, like, my speech is a lot better. The brain fog is gone.

Bill Gasiamis 41:27
So sounds like looking back now, it sounds like your life has changed dramatically, physically, emotionally and mentally. It seems like there’s been a big shift.

Karen Quickenden 41:44
Yeah, a big shift.

Bill Gasiamis 41:46
Would you say is the biggest thing, the most important thing? I know there’s still things that need to come back, yeah, working on and that are not 100% where they you would might prefer. But what do you say is the biggest thing that is improved for you now.

Karen Quickenden 42:02
I think probably the brain and the the normality of the face And, you know, the leg and arm, whatever of I think to myself, well, it’ll get there one day, but at least, you know, to look at me, you you say, Yeah, I’ve had a stroke. Oh, have you Okay? Instead of, you know, them looking at me and going, Oh, she’s had a stroke. You know, blah, blah, blah.

Bill Gasiamis 42:44
So it’s obvious that you that you have had a stroke, if people just look at you and they’re not paying attention to you, yeah, yeah, fair enough, yeah. So what about you, though? Like, What have you discovered about yourself? Like, did you find new strength, or were you always kind of really able to get through difficult times and challenges, or what, how have you personally evolved and changed?

Karen Quickenden 43:14
Um, I suppose I haven’t changed that much. Probably, thinking more about me, and, you know, like, I’ve gotta go to the gym twice a week. I’ve gotta go, I’ve gotta go to this and that and whatever. And whereas before, that wouldn’t have been a choice to me, like going to work, getting home to my daughter, doing what has to be done is done. But nowadays it’s like go to the OT, go to this physio, go to that physio go to, you know, from Monday to Friday is everything about me, and that frees me up for the weekend.

Bill Gasiamis 44:10
But that seems to be a really important lesson that you learnt, that that time has come to make it about you. Yeah, everyone else can kind of fend for themselves, your older daughters, obviously, and your younger daughter’s old enough now she’s getting old enough where she’s becoming more independent. Yeah, yeah, you’ve laid the foundations for them already.

Bill Gasiamis 44:31
They know how to continue on with their life, what they’ve gotta get done. Yep, now you’ve got some space for you. Yeah, that’s right, that’s cool. And then, and then, what’s the idea behind coming on the podcast? What? What were your thoughts when you discovered there was a podcast in that you’d like to share your story? What was that for?

Karen Quickenden 44:59
My OT, Effie said to me, do you know Bill the podcaster? I said, Yeah, I’ve listened to him a few times. And she said, get him to contact you. I said, Oh, okay. That was it.

Bill Gasiamis 45:17
You seem really willing to share your story. Now, Effie is the sponsor of this episode, by the way, through one of their organizations that they do this glove. You might have seen this one. They supply the Syrebo hand glove to people. They use it every week. Okay, so this is not an ad for Effie and her organization, although they are the sponsor.

Bill Gasiamis 45:40
And whoever’s listening to this has already heard me mention them twice, yeah, in the intro and in the mid episode break. But that’s really cool that you use that glove that Effie suggested you should be on here. I really love that. I think it’s a really important part of the recovery is that sharing the story and getting off your chest and making it about somebody else.

Bill Gasiamis 46:05
Because people listening to you will get encouraged. They’ll relate to your story, perhaps, and they’ll relate to what you went through. They might even think about contacting Tobinick and all that kind of stuff. So that’s really cool, and I really appreciate you sharing your story in your own way. It is pretty dramatic. Your one I gotta say, ambos, helicopter, fire, cops. And you’re probably one of the few people who drove into the cop car and didn’t get arrested or didn’t end up in jail. That’s pretty cool. You can say you’ve done that.

Bill Gasiamis 46:45
It’s difficult, though I understand how difficult it can be, if you share one lesson from your experience with the people listening, or maybe people who are newly diagnosed, maybe even listening in hospital. Aanything you’d say?

Karen Quickenden 46:59
Just keep going. That’s all I can say, is keep going. One day we’ll all be back to, well, you could say normal. But what’s normal? Yeah, I think there’s never, like, there’s no date. You can’t put a date on it, like, by this date, it’ll be all over and you just get up and walk away. Well, hello, there’s no date.

Bill Gasiamis 46:59
Your six weeks has blown out a little.

Karen Quickenden 47:23
Yeah, way out. But you’ll get there. Everyone will get there. I know it’s horrible, and it’s, I tell you, the best thing I ever did was got my license. That was the first thing that I wanted to get, because my daughter got a learners, and I could sit next to her. I was allowed to do that. So we put the gooseneck on and and we go, and I say to her, I can’t wait to be driving this. She goes, just sit there, big Wyatt. And then I spoke to the girls from NDIS, and I said, right, how do I go about getting my license?

Bill Gasiamis 48:29
And they said, that’s a National Disability Insurance Scheme.

Karen Quickenden 48:44
Yes, I spoke with my ot at the time, who was out at King ARoy, and I said, I’m ready. I’ve gotta get my license. And yeah, so within a few months and some driving with a a guy in his car. And I was just like, Come on, give it to me. And then I got my license, and yeah, it was just.

Bill Gasiamis 49:17
So they initially took it off you after you became unwell. Yeah, license, yep, and then you had to resit the test and everything, right?

Karen Quickenden 49:26
No, I had to, had to drive. I had to go over to Toowoomba, and they had a lady over there. Had to sit with her one day and talk through it all. And I suppose she was checking that my mind was up to date with it all. And I remember saying to her, I might not sound as 100% but it’s all up here. And yeah. So went driving and NDIS pay for the the modifications, and went for a drive in it.

Karen Quickenden 50:14
And I was like, never, never again. Will you see me sitting still. I gotta be doing things. And even if I’m at home and I just go for a drive somewhere, look at the beaches. Drove out to Gatton, where Marley is living, and we’re going today, actually, um, today, she’s doing some roping training with a guy that does roping, and tomorrow she we go to a little town called Texas.

Bill Gasiamis 50:56
Texas, Australia, classic.

Karen Quickenden 51:00
Yeah. So that’ll be my weekend.

Bill Gasiamis 51:04
I love it. It’s so lovely to meet you. Thank you so much for joining me, willing. Oh, that’s alright. I really appreciate it. I’m just curious, actually, before we go, you know, that glove, how? How have you liked it? Does it work? Well, what’s the situation with it?

Karen Quickenden 51:22
Oh, it’s great. It puts your hand out and sucks back, out and in out and in. I do that for however long.

Bill Gasiamis 51:33
Is that your right hand? Can you bring it up? Okay, so it’s normally in that position, and then when you use this, it helps to straighten it?

Karen Quickenden 51:47
Yep, straightens it out.

Bill Gasiamis 51:49
And have you found that as a result of using this, your hand has improved?

Karen Quickenden 51:54
Yes, and they keep the second skin on it as well, and it sits probably like that. There’s skin on. When I don’t have the second skin on, it sits like that.

Bill Gasiamis 52:10
Okay, so that, so your hand with this opens up, and even though you’ve got that second skin on, this, can still go over the top.

Karen Quickenden 52:18
I take the second skin off and use it. And it’s great. It’s well, you couldn’t tell. It’s just fantastic.

Bill Gasiamis 52:36
Okay, and your hand hasn’t been like that since day one. Yeah. Yeah, okay. And have you found out that it’s more flexible and opens better and closes better since, yep, yep. Did that change with the etanercept injection as well? Did it improve?

Karen Quickenden 52:56
Probably a little bit, but not as much as the machine. I suppose you could put it as if it’s getting repaired. It’s like the shoulders working. It’s making its way down to the hand. It’s about elbow mark at the moment, it’s still got a fair bit to do, but.

Bill Gasiamis 53:23
So does the work at the other end?

Karen Quickenden 53:25
Yeah, it’s so good.

Bill Gasiamis 53:28
Alright, it’s good to know I haven’t met anyone who’s used it, so that was really cool to know that you use it. And also, yeah, the guys are sponsoring the episode, so that’s really cool. So honestly, thank you so much for joining me on the podcast, sharing your story. I wish you well in your recovery, and I hope everything goes well. Congratulations on all your achievements. Thanks for sharing your story about the etanercept, and it’s all been amazing. Thank you so much.

Karen Quickenden 53:55
Yeah, that’s alright.

Bill Gasiamis 53:58
That was Karen Quicken then sharing her incredible recovery journey from colliding with a police car on the day of her stroke to regaining independence and hope through Dr. Tobinick Stroke Treatment, her story is a powerful reminder that recovery is possible in ways we might not expect. Remember to subscribe to the recovery after stroke podcast so you never miss an episode.

Bill Gasiamis 54:21
And if you’ve found this conversation helpful, consider supporting the show through Patreon. Your support keeps this resource alive for stroke survivors worldwide. Finally, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s available at recoveryafterstroke.com/book, and it’s all about how to move from struggle toward post traumatic growth.

Bill Gasiamis 54:45
Thanks again to Banksiatech for supporting this show and episode and for helping stroke survivors improve hand function with the Syrebo Hanson rehab glove. I’m Bill Gasiamis. Thank you for joining me and remember. Remember, you’re not alone on this journey.

Intro 55:02
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.

Intro 55:18
All content on this website and any linked blog, podcast or video material controlled. This website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 55:41
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Intro 56:03
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Intro 56:20
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