Recovery After Stroke

When we hear about stroke recovery, we often imagine slow progress, physical therapy, and determination. But for some survivors, the road begins at an even more unimaginable place: locked-in syndrome.

Dylan Alford’s story shines a light on the reality of recovery from locked-in syndrome, a journey filled with emotional battles, small victories, and relentless courage.

Locked-in syndrome is a rare and severe neurological condition where a person is conscious and aware but unable to move or speak due to paralysis of nearly all voluntary muscles. It’s often caused by a brainstem stroke, as was the case for Dylan.

Key fact: Recovery from locked-in syndrome varies greatly between individuals. Progress may be slow, but meaningful improvements are possible, as Dylan’s story shows.

Dylan experienced his third stroke, a brainstem stroke, in 2023, which resulted in locked-in syndrome for two weeks. Trapped in his body, fully conscious but unable to move, he began a recovery journey that continues to this day.

Over the months that followed, Dylan worked tirelessly to regain basic functions:

• Speech: With the help of a nasal device and intensive therapy, Dylan can now speak, despite ongoing fatigue and effort.
• Mobility: Dylan uses a walker but dreams of walking faster and more confidently.
• Emotional health: Dylan battles PTSD, pseudobulbar affect, and emotional ups and downs while practicing emotional awareness and resilience.
  

Dylan’s experience highlights the often invisible side of stroke recovery — the emotional and mental toll.

He bravely shares:

• The trauma of waking up locked-in and the fear that still visits him at night.
• The emotional lability that leaves him crying easily over small things.
• The challenge of staying hopeful when progress feels slow.
  

Dylan’s advice: “Be aware of your emotions. Take control where you can — through food, movement, or mindset.”

Nasal speech device: Helps redirect airflow, making speech less exhausting.

Baclofen pump: Manages spasticity, offering the potential for smoother movement.

Support community: Connecting with others like Duncan and Clodagh through the podcast made Dylan feel less alone.

Dylan’s goals are simple but powerful:

• Walk faster and more confidently.
• Strengthen his speech and reduce reliance on devices.
• Stay emotionally resilient through ongoing challenges.
  

Progress is possible, even after locked-in syndrome.

Community and connection matter.

Every small step counts.

Dylan’s journey reminds us that stroke recovery isn’t just physical — it’s emotional, mental, and deeply personal.

Yes. While full recovery is rare, many people — like Dylan — achieve significant improvements in speech, movement, and independence.

A combination of therapy, assistive technology, emotional support, and medical interventions like a baclofen pump can make a big difference.

Dylan’s story shows that recovery from locked-in syndrome is about more than regaining movement. It’s about reclaiming hope, purpose, and identity.

If you or someone you love is navigating life after a stroke, know that you are not alone. Community, determination, and small steps forward can create meaningful change.

Dylan’s recovery from locked-in syndrome shows the emotional, physical, and mental battles stroke survivors face every day.

Dylan Alford’s Instagram

Listen to my interview with Duncan Campling (Episode #133) — another survivor of locked-in syndrome.

Check out Clodagh Dunlop’s story (Episode #38) for further inspiration.

Explore my book The Unexpected Way That a Stroke Became the Best Thing That Happened

Highlights;

00:00 Dylan Alford’s Introduction and Background
03:56 Radiation’s Long Shadow: Dylan’s Journey from Brain Tumor to Stroke
09:23 Dylan’s Medical History and Stroke Details
16:08 From Coordinator to Survivor
20:52 Emotional and Mental Challenges
31:35 Daily Life and Rehabilitation
43:30 Baclofen Pump: Dylan’s Hope for Regaining Movement
47:01 Not Alone: How the Podcast Helped Dylan Through Recovery

Transcript:

Bill Gasiamis 0:00
Before we dive into today’s episode, a sincere thank you to everyone who’s taken a moment to comment, leave a review, support the show on Patreon, click the YouTube super thanks button, buy a copy of my book, or even just not skip the ads. Your support means more than you know you’re helping this podcast reach someone who, like Dylan once did feel trapped physically, emotionally or both, you’re helping them feel seen, and you’re keeping this work alive. Today’s episode is raw, real and quietly powerful.

Bill Gasiamis 0:37
Dylan Alford faced something few can imagine: locked-in syndrome after a brainstem stroke. For two weeks, he could see, hear and think, but he could not move or speak. Since then, he’s been working every day to reclaim what was lost, speech, movement, and independence. His progress is hard won. His emotional strength inspiring, and his journey a reminder that even the smallest steps forward matter. If you’ve ever felt like recovery was too heavy, or that no one sees the fight behind your progress, this conversation is for you. Let’s get started. Dylan Alford, welcome to the podcast.

Dylan Alford 1:20
Thank you. It’s nice to meet you.

Bill Gasiamis 1:27
It’s nice to meet you too. Tell me a little bit about that device that you just put on your nose. What is that and how does it help you?

Dylan Alford 1:35
Breathing is just a nose blow up
, it helps by breathing so I can talk easier.

Bill Gasiamis 1:55
You had a brainstem Stroke?

Dylan Alford 1:58
Yeah.

Bill Gasiamis 1:59
What was it caused by?

Dylan Alford 2:23
When I was younger I had a radiation in my blood vessel. So I guess a blood clot is it.

Bill Gasiamis 2:27
So it was a blood vessel?

Dylan Alford 2:31
Yeah it was small.

Bill Gasiamis 2:34
A really small blood vessel.

Dylan Alford 2:36
And I had a blood clot.

Bill Gasiamis 2:42
You had a blood clot that went in there and got stuck in there.

Dylan Alford 2:45
Yeah.

Bill Gasiamis 2:46
Okay, what caused the blood clot? Do we know?

Dylan Alford 2:49
I don’t know.

Bill Gasiamis 2:53
Okay, how old were you?

Dylan Alford 2:57
This was in 2023. But this is my 3rd stroke.

Bill Gasiamis 3:11
So the last incident in the brain stem was in 2023 but this is your third stroke.

Dylan Alford 3:16
Yeah.

Bill Gasiamis 3:18
Okay.

Dylan Alford 3:21
I’ve had my first in 2019.

Bill Gasiamis 3:28
In 2019 you had your first one, and was it the same kind of stroke, a similar type of thing in the same place?

Dylan Alford 3:36
No, it was an ischemic.

Bill Gasiamis 3:44
Schemic stroke?

Dylan Alford 3:45
Yeah.

Bill Gasiamis 3:46
In a different location?

Dylan Alford 3:48
Yeah on my left.

Bill Gasiamis 3:53
On your left side.

Dylan Alford 3:56
Yeah.

Bill Gasiamis 3:56
Why are you having multiple strokes? What’s causing it?

Dylan Alford 4:02
Well my neuro surgeon says it was, when I add my radiation.

Bill Gasiamis 4:18
Okay when it was what? What was it? What was the last part you said?

Dylan Alford 4:24
It was from the radiation.

Bill Gasiamis 4:28
From radiation.

Dylan Alford 4:29
Yeah.

Bill Gasiamis 4:31
Okay, so radiation from what?

Dylan Alford 4:34
Well when I was younger, I had a brain tumor. Yeah, so I’ve had so much fun.

Bill Gasiamis 4:55
You’ve had heaps of fun, man.

Dylan Alford 4:57
“Oh, yeah.”

Bill Gasiamis 4:58
Okay, shit. It so you had a brain tumor when you were younger. In order to treat the brain tumor, they use radiation, yeah, and the radiation, one of the side effects is it causes damage to the blood vessel, and as a result of that, it makes it smaller.

Dylan Alford 5:21
Yeah, and that’s how I get the blood clot.

Bill Gasiamis 5:24
That’s how you get blood clots, because of the passage for the blood to go through is smaller. It changes the blood flow. The blood flow causes clots and it gets stuck in the blood vessel.

Dylan Alford 5:31
Yeah, exactly.

Bill Gasiamis 5:47
Wow, man, how old were you when you had the brain tumor treated?

Dylan Alford 5:53
Since 6 and 12.

Bill Gasiamis 5:56
Since you’re 12?

Dylan Alford 5:58
Well, 6 up to 12.

Bill Gasiamis 6:06
So you had the brain tumor diagnosed earlier. It has been treated up until the age of 12.

Dylan Alford 6:13
Yeah.

Bill Gasiamis 6:13
Okay.

Dylan Alford 6:14
Now I just hit it more, and it gets serious every year.

Bill Gasiamis 6:23
Okay, and the brainstem stroke was the most serious stroke that you’ve had of all.

Dylan Alford 6:32
Yeah, my first stroke I’ve been having in about two months, but not this one. It’s been about a year and a half.

Bill Gasiamis 6:58
Before this brainstem stroke, did you have deficits that were related to the brain tumor?

Dylan Alford 7:09
Memory loss.

Bill Gasiamis 7:11
Memory loss, but you were physical, you were active.

Dylan Alford 7:15
Yeah.

Bill Gasiamis 7:17
And since the brain stem stroke, that’s the one that has caused a spasticity?

Dylan Alford 7:24
Yeah.

Bill Gasiamis 7:25
Altered your speech as well.

Dylan Alford 7:27
Yup.

Bill Gasiamis 7:28
And then also made it difficult for you to be mobile so you’re in a Wheelchair.

Dylan Alford 7:35
Yes.

Bill Gasiamis 7:36
Okay, it’s been a crazy journey.

Dylan Alford 7:42
Yeah. You know who has been helping me on the talking.

Bill Gasiamis 7:54
Duncan Campling.

Dylan Alford 7:55
He has been everything than I was, and so has Clodagh.

Bill Gasiamis 8:02
Clodagh Dunlop.

Dylan Alford 8:10
Yeah, both of them.

Bill Gasiamis 8:11
That is so good to hear that you’ve connected with Duncan Campling and Clodagh Dunlop, who Clodagh I interviewed so many years ago, very, very early on in the podcast. And let me, I’m going to go and get the details of when I interviewed them both. So that we can make sure the links are there in the show notes. Clodagh was so many years ago. She was episode 38 I mean, there’s 350 episodes.

Dylan Alford 8:52
I was in the hospital that was the first episode, that was the first episode, I’ve watched.

Bill Gasiamis 9:05
Wow, man, and then, and then Duncan was episode 133.

Dylan Alford 9:11
And what am I?

Bill Gasiamis 9:17
And you are going to be something above 350.

Dylan Alford 9:21
“Oh, man.”

Bill Gasiamis 9:23
Yeah, okay, that is really cool. Man, I’m so glad to hear that you’ve been able to find other people that have been through what you’ve been through. Is that a good thing?

Dylan Alford 9:35
Yeah, they have helped me a lot.

Bill Gasiamis 9:42
Have you had the opportunity to zoom with them, or are you just talking with them via email?

Dylan Alford 9:49
Can talk on Messenger but we sometimes talk.

Bill Gasiamis 10:04
On zoom.

Dylan Alford 10:06
Yeah, well I barely talk to you on Instagram.

Bill Gasiamis 10:15
Instagram Messenger.

Dylan Alford 10:18
Yeah.

Bill Gasiamis 10:19
Yeah, okay, wow, man, let’s pause here for a moment. By now, you’ve heard Dylan share what it’s like to wake up locked in, to fight for every word, every step, and to carry that emotional weight day after day. If you’re listening and thinking, This feels familiar, please know you’re not alone. The struggle to speak and move to be understood. It’s real and it’s exhausting. If this part of Dylan’s story resonates with you, drop a comment on YouTube. What’s been the hardest part of your recovery that people don’t see?

Bill Gasiamis 10:54
A big thanks to everyone who helps this show continue. Your super thanks on YouTube, your support of the book and my amazing Patreon supporters. All right, let’s return to Dylan as he talks about the emotional challenges, the tools that help and what keeps him pushing forward. So is it? Who do you live with?

Dylan Alford 11:18
My Wife.

Bill Gasiamis 11:20
Your wife and where are you living? Which country?

Dylan Alford 11:25
I live in, Texas, USA.

Bill Gasiamis 11:32
Okay, so the time zone is pretty good between you and Duncan. You guys can usually catch up at reasonable times.

Dylan Alford 11:42
Yeah.

Bill Gasiamis 11:46
He’s funny. Him and I communicate every so often as well. Through Instagram, he sends me messages, and I send him messages back. And sometimes he sends me terrible emails, and sometimes I sent him terrible emails. Yeah, brilliant. So he’s been on the journey for quite a few years now, and he’s He’s always making improvements, and he’s always looking for a way to recover and overcome his Duncan’s lock locked in syndrome from the brain stem. Stroke was in 2018 did you have locked in syndrome as well?

Dylan Alford 12:38
Two weeks.

Bill Gasiamis 12:40
Two weeks, when you woke up in the hospital, when you were awake, but you’re you couldn’t move anything. What is that like?

Dylan Alford 12:54
I don’t know, I was like playing, I’m telling me “I don’t wanna be here.” and I was like, there has to be a night there.

Bill Gasiamis 13:20
Wow, and you could hear everybody and see everybody around you?

Dylan Alford 13:26
Yeah.

Bill Gasiamis 13:27
And could you move your eyes?

Dylan Alford 13:30
Yeah, and I was barely moving my head.

Bill Gasiamis 13:41
You know with your voice, is that as a result of the tracheostomy? What was that as a result of?

Dylan Alford 13:48
Well, when I had locked in I couldn’t talk for one month.

Bill Gasiamis 14:03
One month.

Dylan Alford 14:04
Yeah.

Bill Gasiamis 14:05
And now is it very tiring to talk?

Dylan Alford 14:11
A little, but not with this.

Bill Gasiamis 14:18
That makes it easier?

Dylan Alford 14:20
Yeah.

Bill Gasiamis 14:20
Yeah, and then your that just makes it change the airflow somehow, does it?

Dylan Alford 14:29
Yeah.

Bill Gasiamis 14:40
All good, all good?

Dylan Alford 14:42
Yeah.

Bill Gasiamis 14:43
Okay, and that meant, how long did you spend in hospital?

Dylan Alford 14:48
Well I was at different hospitals and rehabs for about 1 year.

Bill Gasiamis 15:01
One year.

Dylan Alford 15:01
Yeah.

Bill Gasiamis 15:09
One year, two different hospitals.

Dylan Alford 15:14
Well more than one, 3 or 4.

Bill Gasiamis 15:23
And when you came home, you came home to the house that you were living in beforehand.

Dylan Alford 15:33
Yeah, we moved.

Bill Gasiamis 15:38
You changed location, was the house that you moved into, was it accessible? Easy to get around with your wheelchair?

Dylan Alford 15:52
Well, when I first had hope, it was hard, but now I had to use to it now.

Bill Gasiamis 16:08
Okay, and what about work? What kind of work did you do beforehand?

Dylan Alford 16:14
I worked at a hospital and I was a volunteer coordinator, and I also worked with animals.

Bill Gasiamis 16:37
Volunteer coordinator at the hospital, and then you also worked with animals for?

Dylan Alford 16:47
Volunteer coordinator for that too.

Bill Gasiamis 16:57
Okay, so sounds like volunteer coordinating was your thing?

Dylan Alford 17:01
Yeah.

Bill Gasiamis 17:02
Okay, so your left side was that the side that is not back on board yet, is that the side that’s not back on board? Were you left handed or right handed?

Dylan Alford 17:20
I’m right handed.

Bill Gasiamis 17:23
Okay, I see.

Dylan Alford 17:23
But with my first stroke I was my right hand.

Bill Gasiamis 17:35
For something you’re, what was it?

Dylan Alford 17:39
My first stroke it was my right hand.

Bill Gasiamis 17:48
So your first stroke caused damage to your right hand, and the second stroke caused issues on the left side.

Dylan Alford 17:49
Yep, but now my right hand was a lot better now.

Bill Gasiamis 18:11
But your right hand is a lot better now, you use that to control your, I believe your wheelchairs, is it an electrified wheelchair?

Dylan Alford 18:26
It’s manual.

Bill Gasiamis 18:29
So do you have people coming into the house to care for you, or is your wife doing a lot of that heavy lifting, so to speak?

Dylan Alford 18:40
No, now I’m pretty independent on my own, even though I’m really slow.

Bill Gasiamis 18:57
So you you’re independent on your own, it takes a bit longer to do things.

Dylan Alford 19:03
Yeah.

Bill Gasiamis 19:05
You can get to the bathroom, you can get to eat and make something to drink.

Dylan Alford 19:12
Yeah.

Bill Gasiamis 19:13
Okay.

Dylan Alford 19:16
Now, before when I was lost in and then even a little bit after, I was so weak. I needed help with everything.

Bill Gasiamis 19:39
You were so weak. Well, not moving all that time, there would have been definitely muscle loss and function loss, and then the injury would have caused the same thing, movement loss and function loss and all that stuff. So you had a lot of different things that needed to overcome and rehabilitate. And your rehab, it’s still ongoing, of course. How often do you go to rehab?

Dylan Alford 20:10
Well, right now, it’s on hold until I have a Back Baclofen Pump.

Bill Gasiamis 20:23
A pump of some sort. What was that pump?

Dylan Alford 20:27
It’s for the spacticity.

Bill Gasiamis 20:34
Okay, so the spasticity is getting in the way of your rib.

Dylan Alford 20:41
Yeah, it makes me move so slow.

Bill Gasiamis 20:48
It painful as well?

Dylan Alford 20:52
It was, but not anymore.

Bill Gasiamis 20:56
Okay, so you’re you’re not experiencing pain. Are you on medication to help you? What kind of medication that you on?

Dylan Alford 21:09
I’m on Back Baclofen Pump, and some aspen, and if better, it might end on October.

Bill Gasiamis 21:27
So you’re on a few different medications. Okay, so what is the what does your week look like? How do you occupy your time during the week. What does it start off like on a Monday? And how do you go through that week?

Dylan Alford 21:47
Well, now I try to work out as much as I can and build strength.

Bill Gasiamis 22:02
Build strength and work out as much as you can.

Dylan Alford 22:05
Yeah, and I said to this, I try some tips in my time of different things like that.

Bill Gasiamis 22:20
Yeah, so you so you do as much as you can, so you’ve been in this situation for a little while now. It’s affected you physically, I imagine it’s also affected you emotionally and mentally as well.

Dylan Alford 22:39
Yeah.

Bill Gasiamis 22:40
Okay, that seems like I hit a topic that we need to discuss then, so tell me about the emotional and mental side of it. What is the biggest challenge that you face in that space?

Dylan Alford 22:55
Well, I kind of have PTSD from last year some times when I’m asleep. I think I’m still locked in.

Bill Gasiamis 23:19
Okay. So the PTSD is related to the trauma of waking up locked in, and then you go to sleep, and you have to fight, and you have to catch yourself and remind yourself that you’re not locked in, that you’re asleep.

Dylan Alford 23:42
I am, also many times my emotions are all over the place. I cry about every little thing.I’ll be watching cartoons and I’ll randomly cry, it’s so annoying.

Bill Gasiamis 24:12
I know the feeling I experienced something similar. You know that condition is common, pseudobulbar affect, it’s called.

Dylan Alford 24:24
I know I have a friend who has a stroke that have this too. So, at least I’m not the only one.

Bill Gasiamis 24:44
Yeah, you’re not the only one. So your emotions are all over the place. And does do you also range from crying to angry and frustrated and all that kind of stuff? Yeah?

Dylan Alford 25:01
Well, I was, but now I have a medicine for my anger and my depression, so it helps me stay calm.

Bill Gasiamis 25:23
Antidepressants and that helps the situation a little bit and keeps you a little calmer.

Dylan Alford 25:31
Yeah.

Bill Gasiamis 25:32
Yeah, it’s a lot to deal with, isn’t it? All this stuff, heaps to deal with it.

Dylan Alford 25:37
Well, at least I’m having it now, so I know how to prevent it in the future.

Bill Gasiamis 25:51
So it’s about being aware of it and then taking the right steps and precautions and making sure you prevent it.

Dylan Alford 26:00
Yeah, I’m so much healthier now with what I eat.

Bill Gasiamis 26:11
Okay, so you be healthier than you used to be.

Dylan Alford 26:15
Yeah.

Bill Gasiamis 26:16
okay, how bad was it before? Were you unhealthy?

Dylan Alford 26:19
Well, I wasn’t really bad but I just neglect how would I eat or drink.

Bill Gasiamis 26:35
So now you understand the connection of food to helping your brain heal and recover and for you to get more physical and to improve, basically.

Dylan Alford 26:47
Yeah.

Bill Gasiamis 26:52
That’s fair enough. What else have you discovered that you can do? So one of the challenges that stroke survivors have is they feel like they’re a little bit out of control of situation, which makes sense. When you have a stroke, you realize that there’s some things you can do to take control of your recovery and influence it in a positive way. So you’re paying attention to your food. What other things you’re physically active, you’re doing as much as you possibly can to rehabilitate yourself. What other things have you taken responsibility for and are doing to support your recovery?

Dylan Alford 27:28
Well, now I’m a lot more aware with my emotions like when I’m feeling angry or I can’t turn it better.

Bill Gasiamis 27:53
Okay, so you’re more aware of your emotions, and you’re and you’re able to catch yourself out, and you’re able to adjust the situation, like change the way you’re reacting. What is it?

Dylan Alford 28:08
Well, also the medicine helps.

Bill Gasiamis 28:17
Combined, they both help.

Dylan Alford 28:20
Yeah, because before the medicine, I want to control my emotions, but sometimes I just couldn’t.

Bill Gasiamis 28:40
Yeah, well, you’re pretty normal in that way, everyone is there every so often.

Dylan Alford 28:49
Yeah.

Bill Gasiamis 28:49
And it’s not justifiable, but you have understandable reasons why you can lose your shit every so often. It makes sense, okay, but you still want to be aware of your behavior. Is it you still want to be better? Regardless of whether or not you’re gone through a tough time.

Dylan Alford 29:17
I would like to control it without medicine.

Bill Gasiamis 29:27
To control without medicine?

Dylan Alford 29:29
Yeah.

Bill Gasiamis 29:30
Well, that is, that’s a great thing to achieve, absolutely, if you worked on that and you got to that stage, that’s a great achievement, most people don’t manage to control their emotion, so curiosity, other than meeting me and me meeting you, how come you decided to reach out and jump on the podcast.

Dylan Alford 29:30
Well, actually when I first had my stroke, I watched really a lot of your podcast, and then help me feel like I wasn’t alone.

Bill Gasiamis 30:25
Yeah, okay, so you’re hoping that this interview again will be found by somebody else, and it will help them.

Dylan Alford 30:34
Maybe it’ll help them feel more like they’re not alone.

Bill Gasiamis 30:45
They’re not alone. And there’s other people that have been through this.

Dylan Alford 30:49
Yeah.

Bill Gasiamis 30:51
Duncan, I’ve noticed his improvement over the years as well, since he joined me.

Dylan Alford 30:58
He has improved so much from when he did the interview with you.

Bill Gasiamis 31:14
I haven’t spoken to him face to face for a little while, so as he improved in his talking and his abilities.

Dylan Alford 31:23
Me and him almost talk the same.

Bill Gasiamis 31:30
Okay, almost talk the same.

Dylan Alford 31:34
Yeah.

Bill Gasiamis 31:35
Okay, that’s so good. Duncan, I remember we were talking on the podcast interview that I did with Duncan. We were talking with the with his voice, automated voice, with his computer voice, which we prepared that interview so that he had the questions ahead of time, and then he typed the answers. And then, when we met for the podcast, I would ask him the question again, and he would respond with his computer voice.

Dylan Alford 32:09
Well, I was thinking about doing that myself, but then I thought “Wow, this is a good exercise for my speech.”

Bill Gasiamis 32:29
Yeah, absolutely.

Dylan Alford 32:32
Yeah.

Bill Gasiamis 32:36
Absolutely, it’s a good exercise for your speech. Do you normally have this length of conversation?

Dylan Alford 32:41
No. Usually I talk only for a minute or two and then I’m quiet.

Bill Gasiamis 33:01
So, is it fatiguing to talk for this period of time.

Dylan Alford 33:05
Well, if I didn’t have this, it would be.

Bill Gasiamis 33:16
That’s that device is just blowing me away. I just can’t wrap my head around how that device works. I need to look into it and understand it better. But I’m so good, I’m so good that a little device like that makes such a massive difference.

Dylan Alford 33:29
Well, it really helps me with my breath.

Bill Gasiamis 33:38
With your breathing.

Dylan Alford 33:38
Yeah, you remember how hard and tough, for the air to exhale, and just want a sip, you know, that was me too.

Bill Gasiamis 33:59
Okay, so the idea is to stop the air going through the nose.

Dylan Alford 34:04
Yeah, but the speech therapists told me.

Bill Gasiamis 34:11
Okay, your speech therapist told you. How often do you do speech therapy?

Dylan Alford 34:16
Well, right now, it’s on hold. But before I did it Monday to Friday.

Bill Gasiamis 34:32
Five days a week?

Dylan Alford 34:34
Yeah.

Bill Gasiamis 34:35
Okay, and would you what percentage, how much has your voice improved since the beginning of this situation?

Dylan Alford 34:46
I’m not, I’ve been in the beginning I couldn’t talk it or drink. I couldn’t even open my mouth. So to me now I’m so thankful.

Bill Gasiamis 35:14
You’re grateful. So you couldn’t even open your mouth. Was even a problem?

Dylan Alford 35:20
No.

Bill Gasiamis 35:23
So now you’re drinking safely, and you’re eating safely.

Dylan Alford 35:29
Yeah.

Bill Gasiamis 35:34
Are there any restrictions on what you will eat or not?

Dylan Alford 35:37
Nope, no. Well, even when I was on resource, I did my own thing. I just ask whatever I want even though I wasn’t allowed.

Bill Gasiamis 36:03
Okay, so even though you weren’t allowed, you just ate whatever you wanted. Okay, that’s dangerous. Did you have any close calls?

Dylan Alford 36:19
Man, one time I was choked on a grape and then had to call 911.

Bill Gasiamis 36:34
Choked on a grape. A grape is the most deadliest food in the planet, I feel like.

Dylan Alford 36:38
Yeah, well, now I know.

Bill Gasiamis 36:43
Now you know. No more grapes, or are you back on grapes? Can you eat grapes now?

Dylan Alford 36:50
No, I can’t.

Bill Gasiamis 36:54
Okay, so did that happen at home? Or did that happen at a hospital?

Dylan Alford 37:00
Happened at one of my rehab sessions.

Bill Gasiamis 37:04
Rehab Sessions. Wow, man, that’s risky.

Dylan Alford 37:11
Yeah.

Bill Gasiamis 37:14
Now you understand the reason why you weren’t allowed to eat certain foods.

Dylan Alford 37:17
Yeah.

Bill Gasiamis 37:17
Fair enough.

Dylan Alford 37:17
I was such like, whatever and I didn’t hear what happened, but now I understand why.

Bill Gasiamis 37:38
Now you yeah understand why. Fair enough. So, what else are you hoping to achieve? What are your goals for the next, say, 12 months.

Dylan Alford 37:50
Right now, I really want to walk with nobody. I walk with a walker but I am so slow.

Bill Gasiamis 38:14
You walk with a walker at the moment.

Dylan Alford 38:17
Yeah, but I am so slow.

Bill Gasiamis 38:23
Slow, okay.

Dylan Alford 38:25
So, I would like to walk more fast and normal.

Bill Gasiamis 38:35
More fast and more normal.

Dylan Alford 38:38
Well, and also my voice of course.

Bill Gasiamis 38:46
You want to improve your voice as well. So with your walking, for example, do you walk into the house and go into the bathroom or go into the kitchen? Is that how you get around the house? Walking?

Dylan Alford 38:59
Yeah, well, only if someone is here. When I’m alone I’m in my chair.

Bill Gasiamis 39:18
Make sure you don’t fall over without anyone being there to help?

Dylan Alford 39:22
Yeah, because I cannot help up my self.

Bill Gasiamis 39:32
If you fall over, you can’t get up. Yeah, have you had falls on your own?

Dylan Alford 39:39
Maybe.

Bill Gasiamis 39:43
Okay.

Dylan Alford 39:46
Well, nobody’s here know me by name.

Bill Gasiamis 39:53
Yep, do you have people who come into the house to support you during the day, or are you alone most of the day?

Dylan Alford 40:01
Well, I did, but right now we are waiting on a new care giver to start.

Bill Gasiamis 40:09
Okay, so you’re waiting for a new care giver to start, at the moment and the old carer finished up or couldn’t support it? Couldn’t do the role anymore? What happened?

Dylan Alford 40:37
There was once a rehab. So, now I have a new one.

Bill Gasiamis 40:39
Is it a massive inconvenience to not have somebody with you, dropping in to see you?

Dylan Alford 40:46
Yeah, because if someone is here the whole time, then I had practice by walking.

Bill Gasiamis 41:04
Use it as an opportunity to practice your walking?

Dylan Alford 41:06
Yeah, but when I’m alone, I was always in my chair. Not improving.

Bill Gasiamis 41:24
So the more people who are around, the more opportunity you have to be on your feet, focusing on getting better quicker, walking more normal, and then and achieving one of your goals, one of your aims.

Dylan Alford 41:40
Yeah, exactly.

Bill Gasiamis 41:42
Okay, and then other than that, so with your talking, you’re doing therapy. How come that’s on pause?

Dylan Alford 41:53
Well, they are just waiting for me to have my pump, so I can improve more.

Bill Gasiamis 42:11
To have your pump.

Dylan Alford 42:13
Yeah, because right now, my improvements are kinda on a plateau.

Bill Gasiamis 42:29
So, your improvements are kinda on a plateau at the moment.

Dylan Alford 42:31
Yeah. So, they wanna see how I do with my pump.

Bill Gasiamis 42:40
Okay, tell me about the pump again. What’s the pump?

Dylan Alford 42:43
It helps relieve my spasticity.

Bill Gasiamis 42:51
Okay, that pump. So is it a medication?

Dylan Alford 42:55
Yeah, and it goes in your spine.

Bill Gasiamis 43:01
I’m gonna just search that right now. I just want to understand a little bit about it. So it spasticity pump medication.

Dylan Alford 43:15
Yeah, best medication pump.

Bill Gasiamis 43:30
Let’s see if I can find it. I’m trying to understand what. Okay, you mentioned that earlier, but I didn’t pick up on it. So it’s the Back Baclofen Pump.

Dylan Alford 43:44
Yeah.

Bill Gasiamis 43:44
Or the intrathecal baclofen pump. What do they make it so hard to to say.

Dylan Alford 43:53
Yeah, yeah.

Bill Gasiamis 43:54
So a spasticity pump, also known as a baclofen pump, is a medical device implanted under the skin to deliver medication called baclofen directly into the spinal fluid. It’s used to treat severe spasticity. It delivers a small, controlled dose of baclofen directly into that intrathecal space around the spinal cord. This allows medication to bypass the digestive system, reducing side effects, compared to taking baclofen orally.

Bill Gasiamis 44:28
It helps relax the muscles, reduce spasms and improve comfort and mobility. So when you have that from 1 to 10, if one is it doesn’t change anything. And 10, it changes a lot of things. How much does it change your spasticity? How much does it improve it?

Dylan Alford 44:51
Well, right now I’m talking. To other who has it and then tell me it helps you a lot.

Bill Gasiamis 45:08
A lot, heaps, okay.

Dylan Alford 45:11
And they were able to walk, run, drive on his.

Bill Gasiamis 45:21
Wow, okay, so it improves that dramatically where they’re able to improve their walking, driving and everything else.

Dylan Alford 45:30
Yeah, I mean obviously he has, he had been up, but whole fully not.

Bill Gasiamis 45:47
And have you had the baclofen pump before, or is this the first time?

Dylan Alford 45:51
The first time.

Bill Gasiamis 45:54
Okay, so it’s all new to you. You’re going to learn about how it’s going to help you. And then one, once you have that set up, then you’ll be able to determine how much more activity you can do?

Dylan Alford 46:09
I have to rehab again.

Bill Gasiamis 46:17
Then you can go back to rehab. Okay, so it’s a very important step.

Dylan Alford 46:28
Yeah.

Bill Gasiamis 46:28
Okay, I see and your wife. Does she work during the day?

Bill Gasiamis 46:34
Yeah.

Bill Gasiamis 46:38
I was gonna say, how many hours a day is she away from the house?

Dylan Alford 46:47
She makes her own schedule, so a lot of time she was from home.

Bill Gasiamis 47:01
She makes her own schedule, so she can drop in and check in “Okay, goodbye.” excellent. So, what else should we discuss? What else did you have something that you wanted to share or talk about?

Dylan Alford 47:25
Well, I would just wanna say, I want many of your episodes. When I was in the hospital, it helped me a lot.

Bill Gasiamis 47:48
I’m so glad that it helped you, man, I am so glad that my episodes made it possible for you to find Clodagh and Duncan make you feel like you’re not alone, that somebody understands you and encourages you. Your hope, encourages you to keep going after recovery like they did.

Dylan Alford 48:07
Yeah.

Bill Gasiamis 48:10
Yeah, fantastic, man.

Dylan Alford 48:10
They help me a lot.

Bill Gasiamis 48:17
I love hearing that. That’s the whole reason why I started the podcast was to find people to help each other so that we can connect, so that we know we’re not alone. And in 2012, of when I went through my three brain bleeds, there was nothing around that I could find or connect with or do that was making me feel the way that I needed to feel, like I wasn’t alone, and there was other people going through what I was going through.

Bill Gasiamis 48:47
And I started the podcast, and it changed everything for me, and then I didn’t realize that it was changing a lot of things for other people as well, which was just a bonus.

Dylan Alford 48:58
I remember when I had that, I’m lost in, but I still couldn’t talk, I was just lay in bed watching the different episodes.

Bill Gasiamis 49:22
I’m so glad, man.

Dylan Alford 49:26
Yeah.

Bill Gasiamis 49:28
Well, I really appreciate you reaching out, connecting, following me, listening to my episodes. I love that you are still passionate about your recovery and finding solutions to help you get better, and thank you for being my guest. Man, I really appreciate it.

Dylan Alford 49:48
Thank you as well, for having me.

Bill Gasiamis 49:52
Well, that’s it for another episode of the Recovery After Stroke podcast. Dylan’s story doesn’t have any ending yet. It’s a journey of small, gritty winds, clearer word, a steadier step, a deeper breath. I’d love to hear what stayed with you from this episode, what part of Dylan’s journey spoke to you and your experience.

Bill Gasiamis 50:15
Let’s keep this space one way stroke survivors feel seen, heard and supported. If you’re ready to go deeper, The Unexpected Way That A Stroke Became The Best Thing That Happened. My book is for anyone looking to find meaning and momentum after stroke, you’ll find stories, tools and circuit breakers to help you shift. Check it out at recoveryafterstroke.com/book, if Dylan’s story moved you. Please share this episode. Someone else may need it today, and remember, slow progress is still progress. See you next time.

Intro 50:47
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 51:17
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 51:42
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 52:09
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 Some Days I Break Down: Dylan on Recovery from Locked-In Syndrome appeared first on Recovery After Stroke.

The recovery of brain hemorrhage is one of the most misunderstood and under-supported journeys in stroke care. For many survivors, the moment of hemorrhage comes without warning; one minute, life is normal, and the next, everything has changed. What follows can be months or even years of physical, emotional, and mental rehabilitation. And no two journeys are alike.

Whether you’re early in your recovery or years down the road, this post offers insight into the multifaceted path of healing after a brain hemorrhage, from clinical interventions to emotional breakthroughs, and everything in between.

A brain hemorrhage is a type of stroke caused by bleeding in or around the brain. This bleeding creates pressure that can damage brain tissue, interrupt neural connections, and affect functions like speech, movement, vision, memory, and emotional regulation.

Recovery is possible, but it takes time, patience, and often, creativity.

Once the initial emergency is managed, survivors often discover that recovery is far more complex than anyone explained. It’s not just about regaining movement, it’s about rebuilding life. The recovery of brain hemorrhage involves:

• Physical rehabilitation: Learning to walk, talk, or use affected limbs again through physiotherapy and occupational therapy.
• Emotional healing: Managing trauma, identity shifts, grief, and isolation that often follow stroke.
• Cognitive training: Rebuilding memory, focus, speech, and executive functioning.
• Lifestyle changes: Nutrition, sleep, exercise, and stress management play a big role in reducing brain inflammation and supporting neuroplasticity.

Some survivors pursue traditional rehabilitation pathways, while others explore experimental or complementary approaches. Commonly explored treatments and supports include:

• Hyperbaric Oxygen Therapy (HBOT): May support brain healing by increasing oxygen delivery to damaged tissues.
• Transcranial Magnetic Stimulation (TMS): A non-invasive therapy that uses magnetic fields to stimulate neural activity in targeted brain regions.
• Etanercept (Perispinal): An experimental anti-inflammatory injection not widely available, but showing promise for some with post-stroke inflammation.
• Botox for spasticity: Can offer temporary relief from muscle stiffness, though results vary.
• Acupuncture: May provide pain relief and reduce stress or inflammation.
• Dietary changes: Many survivors adopt anti-inflammatory or plant-based diets to support brain and body recovery.
• Psychological support and coaching: Holistic recovery often depends on addressing mindset, inner dialogue, and long-held emotional patterns.

Each of these options comes with its own risks, costs, and potential rewards. Recovery is rarely about just one solution, it’s about layering tools that work for you.

The emotional impact of a brain hemorrhage is often overlooked, but it’s just as real as the physical symptoms. Survivors frequently report grief, fear, frustration, and even moments of hopelessness. Others describe breakthroughs that came only after deep inner work through therapy, coaching, or spiritual reflection.

The truth is: healing happens on multiple levels.

Changing the way we speak about ourselves (“I’m not disabled, I’m recovering”) and processing emotional wounds from the past can have a profound effect on how the body responds to rehabilitation.

One of the most discouraging myths in stroke recovery is the so-called “plateau”, the idea that progress stops after 6–12 months. But that’s not how the brain works.

Recovery can, and does, continue for years. What may look like a plateau is often the body recalibrating, consolidating progress, or responding to fatigue. In some cases, significant gains occur after the first year. Neuroplasticity doesn’t expire.

The key is to stay engaged, curious, and supported.

The recovery of brain hemorrhage is not a solo mission. Whether you’re still in the hospital or adjusting to life months or years after your stroke, know this: there are communities, conversations, and tools out there to help you heal.

At Recovery After Stroke, we’ve created a space where hundreds of survivors and experts share their stories, strategies, and support. You can find full-length interviews on our YouTube channel or connect through our growing community of stroke thrivers.

Recovery doesn’t always look like it used to. Maybe your hand still won’t open, or your walk isn’t perfect. But if you’re choosing better food, showing up to rehab, or speaking to yourself with more compassion, you’re recovering.

Progress isn’t always visible, but it’s real. Your story is still unfolding.

Recovery of brain hemorrhage from Jason’s perspective, treatments, setbacks, and mindset shifts that shaped his healing journey.

Neurologic Recovery Clinics
Hyperbaric Oxygen Therapy (HBOT)
Emma Thompson: Holistic Life Coach
Andy Husler

Highlights:

00:00 Jason’s Introduction and Initial Conditions
03:45 The Day of the Stroke and Initial Reactions
10:40 Treatments and Their Impact
15:51 Trading Life, Family, and Recovery After a Brain Hemorrhage
22:51 Hope, Hype, and Unanswered Questions
32:19 Tangible Relief from Spasticity
40:02 Family Life and Emotional Recovery
56:35 Challenges and Future Plans
1:01:51 Final Thoughts and Advice
1:05:26 Navigating Plateaus in Stroke Recovery
1:13:50 The Podcast That Heals: Bill & Jason on Connection, Recovery, and Regret

Transcript:

Bill Gasiamis 0:00
Jason was 56 driving to dinner in Dubai when his hand suddenly slipped off the steering wheel, and moments later, his foot slammed down on the accelerator. That’s how his stroke started. What followed was a brain hemorrhage, partial paralysis and a recovery journey that took him across countries, through experimental treatments and into some deeply emotional territory. But here’s the part that might surprise you, it wasn’t the cutting-edge drug or the therapy machine that changed everything. Jason says that the biggest breakthrough came from something far more personal.

Bill Gasiamis 0:39
Hello everyone, and welcome to another episode of the recovery after stroke podcast. I am so glad you’re here. Whether you’re a stroke survivor, a caregiver or someone just looking for hope after a brain injury, you’re in the right place. More and more people are finding this podcast while still in hospital, sometimes just days after being diagnosed. That’s why I started this to shorten the time between stroke and connection. And if you’re someone who believes in the power of shared stories to make recovery feel less lonely and more possible.

Bill Gasiamis 1:13
Please consider supporting the show at patreon.com/recoveryafterstroke every contribution helps keep this mission alive. Now let me introduce you to Jason, a brain hemorrhage survivor who tried nearly everything to get his life back. Etanercept, TMS, HBot, acupuncture, Botox, dye changes, and more. But what you’re about to hear goes beyond rehab and into something much deeper. This is the real work of recovery, the mental, emotional and human side. Let’s dive in. Jason Hellowell, welcome to the podcast.

Jason Hellowell 1:49
Nice to see you. Nice good morning.

Bill Gasiamis 1:52
Thank you for being here. I really appreciate it. Tell me what was like, What was life like for you before the stroke?

Jason Hellowell 2:05
I was a very active person. I rode motorcycles, I water skied, I skied. I have a boat, living life at its best without question. Yeah, and then things change. How old were you within split seconds, I was 56 when it happened.

Bill Gasiamis 2:25
Tell me about that day. What was it like leading up to the strike? Did you notice anything? And then what happened?

Jason Hellowell 2:34
You know, in hindsight, when you look back after it happens, you you kind of think back, was there anything that gave me a sign that potentially would say, Okay, you’re about to have this brain hemorrhage. And in hindsight, yes, there may be a couple of things that happened, among others, waking up in the morning and having a very dizzy spill spell, just bang, whoa. That’s dizziness, right? And then it was gone. And being a typical man bloke syndrome, I just went “Oh, that’s nothing.” Just waking up. You know, I’m 56 nothing.

Jason Hellowell 3:07
And then on the ninth, sixth of September 2023 I was driving along the sheik Zayed Road, which is the main artery Road in Dubai, here where I live, and my hand fell off the steering wheel of the car, and my right hand just went and dropped off the steering wheel. Luckily, I pulled into the side, I put the car into Park, because then two minutes later, my foot did the same, but landed on the accelerator. So then it was, you know, the engine was revving and it was going absolutely Ah, so luckily I’d stopped the car, because if I’d have just carried on driving my left hand.

Jason Hellowell 3:45
I would have driven into whatever right Anyways, my wife was with me. Luckily, she found super strength to get me out of the car, into the back of the car, and off we went to hospital, and there you go. Where were you heading? We were on the way out for dinner, regular day to go in for dinner. No symbols, no pain, no signs, no pains, no headaches, no no nothing. I was aware that I had a blood pressure, and had had for some time, and I had been to the doctors and the doctors that all told me there is blood pressure, but none of the only one.

Jason Hellowell 4:23
I look now and find an email with a prescription for blood pressure tablets in 2000 in 2020, I think it was. And for some reason, I missed that email, and nobody followed up. So it was a prescription by email that I never saw anyway. But then you’ve gone to the doctor a few times afterwards, and you’ve been told blood pressure, nobody has gone boom, let’s just take you and give you a blood pressure tablet, which I’m a little furious about. But anyways, as everybody tells you, you can’t cry over spilled milk. You’ve got to face with the fake facts of what it is. And here I am now.

Bill Gasiamis 4:59
What were your face? First thoughts about what’s happening to your hand while you’re driving, and what happened to your leg

Jason Hellowell 5:06
Afterwards? Well, first of all, when my hand fell off the steering wheel, I said, I said to my wife, there’s something wrong with the steering wheel of the car. I don’t know what my reaction was. It felt like the steering was loose. So I blamed everything else. I didn’t even think about it. And even when I was in the back of the car, though, I did have seconds or moments where I thought, this is the end of it, right? Here’s the end. I did have that thought.

Jason Hellowell 5:34
I continued to be very chilled, and just thought, We’ll fix this. You know, it’s, it’s just something that you go to the doctors, they’ll give you something, you’ll be fixed. And I kind of still think that, but now you’re kind of more aware of what it really is and where I am. Now we’re just under two years from the happens, of it happening and fighting on the path, you know, of recovery, basically.

Bill Gasiamis 6:02
How long did it take to get you to the hospital from that particular location where you guys stopped the car?

Jason Hellowell 6:09
Less than half an hour. Okay, so we were very quickly to the hospital, but we had to go to another hospital to be treated. So I went to the clinic, actually, where I’d been six months before, and where I was told that I had high blood pressure too late then, but and then we took we were sent in an ambulance to a neurospinal hospital where they could do the neuro where I was told to wait for 72 hours to let the blood pressure go down. They had done a scan. They could see the bleed.

Jason Hellowell 6:44
And then afterwards, they did an operation where they cut in and they took out the blood, the excessive blood that was there, to give a better chance of recovery. And thankfully, because prior to the opening and the removal of the hematoman hematoma, my speech was pretty bad, but this the minute that blood was removed, my speech came back very weakly, but did come back so I didn’t lose speech.

Bill Gasiamis 7:15
Yeah. So the blood like me when I had the bleed in my head the first time it It impacted my left side, feeling sensation, all that kind of stuff. Everything was numb, like you’ve like, you’ve sat on your foot, your foot’s gone numb, then you’ve gone to step on it. Yeah, my entire left side was like that. But you know, you wouldn’t really feel like, you wouldn’t really feel like I didn’t know that it was associated to my head. Anyway, when the second bleed happened six weeks later, there was more blood about the size of a golf ball in my head. So that took offline.

Bill Gasiamis 7:53
That took offline the memory, you know, speech, typing, concentration, focus, driving, you know, lots of things went away, and then as the blood decreased in size over about a year and a half, because they never took it out initially, then what happened was all the functions started to come back, and I, I started to feel normal, and everything started to go back to like it was before, but the blood vessel was still faulty. It was still bleeding, micro bleeds. They called it micro bleeds. And then later on, when it bled for the third time, then I blacked out like everything went, pretty dramatic.

Bill Gasiamis 8:34
No, so I beg your pardon, the second time everything went and I blacked out. The third time it felt like sunburn. I was sunburned. That’s all I felt. And I went to the hospital said, right, so it feels like it’s burning. I have definitely have having another bleed, because this is my history, etc. So what your what your brain, what happened to your brain was the blood is just compressing on neurons and cells and just make them go offline. It’s not damaging. Yeah, I make them go off sleepy. The part that’s damaged is in a different location.

Bill Gasiamis 9:09
It’s at the at the epicenter of the blade, for example, and that’s the part of the blood, the part of the brain that perhaps you could say died or stopped working, and then the rest of it around there’s just gone offline and just waiting for an intervention so that it can come back online. Yeah. So when you were hospital, how long were you in there for?

Jason Hellowell 9:37
I was in hospital for a month, yeah. So we were doing, or obviously I was very, very disabled, you know, I was fully paralyzed right side. And quite quickly after the operation, I was beginning to do physiotherapy, but very difficult, but I managed to get. Up and move around. But then I was about a few weeks once I came home, was wheelchair bound. And then, you know, you just start training and hoping and the walking. I mean much as it looks, you know, I limp and I struggle and balance is pretty bad.

Jason Hellowell 10:17
My biggest challenge is the arm. I have very little use of the arm. And, you know, I can see your hand does the opening and closing. I just want to have a little bit of opening and closing to start to train that, you know, because I do believe that you can train it back, but I need that connection to begin to be able to train it. And at the moment, that hand doesn’t react, unfortunately.

Bill Gasiamis 10:40
Let’s take a moment to pause and reflect on what Jason’s been sharing from paralysis on the right side of his body to trying nearly every therapy he could. Jason’s story is one of relentless effort and emotional depth, and while he’s seen progress from experimental treatments like etanercept and TMS, what stands out most is his emotional recovery, learning to speak kindly to himself, releasing long held pain and discovering strength he didn’t know he had. If this podcast is helping you make sense of your own Recovery After Stroke.

Bill Gasiamis 11:12
One way you can support it is simply by listening through the ads. It’s a small gesture, but it helps us keep producing and sharing stories like Jason’s. If you’d like to go further and help bring these conversations to people who are just starting their recovery, sometimes even in their hospital beds, consider joining us on Patreon, at patreon.com/recoveryafterstroke. Your support makes this possible. Now let’s get back to Jason’s story and hear what he’s discovering about healing body, brain and heart.

Jason Hellowell 11:45
I can grip, I can grip, but I can’t open.

Bill Gasiamis 11:50
Yeah. Is it painful?

Jason Hellowell 11:54
Do you know what the pain went away when I did that? 10 recept. Okay, so you know, as I wrote to you on the thing, I’ve tried most of the solutions that you, you’ve written, talked about on your podcast, I’ve done all of them. Actually, the only one I haven’t tried yet is stem cell treatment, which I may go towards in a while, but I don’t know. I’ve looked into the guy in America, this guy Tom, who’s done the, who’s created the drug, you know, I’d be interested to hear that. Yeah, so the pain mostly went when I had a 10 receptor. Okay, we’ll talk about before that. It was like a it was a glowing pain. It’s just a continuous and in fact, having had it for, let’s say 16, 15 months, by the time I went for a 10 recept.

Jason Hellowell 12:47
I didn’t even realize I had the pain until it was gone. You know, your body gets so used to it. You get so used to being in pain all the time that until somebody injects you, and all of a sudden, I when I was lying in the chair, felt like somebody, what you know when they talk about somebody walks over your grave and you go cold, I had that down my right hand side, and the pain was gone. It’s come back a little bit. In certain times when my fist is tight like this, I get pain, but otherwise, I’m not in that much pain, to be honest with you.

Bill Gasiamis 13:24
Okay, so how about your leg? What sort of situation is your leg in? Are you fully mobile?

Jason Hellowell 13:33
Yeah, I can get up and walk around. You know? I can move around. I walk like this morning, I went out for a walk, and I walk a kilometer. It’s not the prettiest walk walk. It’s my arm. My leg swings out a little bit, but I can use it to get around, like you said before, a little bit of imbalance. So the risk of fall is there. I have spasticity in my ankle, spasticity everywhere, but my foot tends to kick inwards, which makes a little risk of standing wrongly and then falling.

Bill Gasiamis 14:06
Yeah. And if I recall correctly, that swing that your leg has got is from the knee, it kind of hasn’t got that real focused swing so that it goes backwards and forwards. It kind of just goes wherever it wants for a little bit.

Jason Hellowell 14:23
That’s right, exactly. So from the knee down, I have less control than I do at the hip. And actually the hip is interesting, because I have, I have forward and backward movement on the hip, but I have very little stability on the diagonal movement, so the leg tends to go out and swing around that, you know, it’s kind of like that, and then you land on your foot and use it as a support to move forward in the next one.

Jason Hellowell 14:47
Yeah. But again, that’s a training thing. I think we can train that pattern and get back to normality by building strength. I believe if I can get my leg strength fully back, we can begin to get there. Yeah. I. I need my hand. You know, I need to ride my motorcycle. Priorities, that motivation?

Bill Gasiamis 15:07
Yeah, you might have to get a three-wheeler and reconfigure the grips, or get an automatic one.

Jason Hellowell 15:14
Yeah, maybe. But I need the left-hand throttle and balance would be incorrect. It’s just, I keep the motorcycle because it’s a motivation to get better. Yeah, and I think where there’s a will, there’s a way, is my saying, right?

Bill Gasiamis 15:27
Yeah, why not? Like, I don’t see an issue with that as well, be great thing to try and and redo, and then and also adapt if you can’t get there, however many years down the track you decide I’m not. I might not get there. Well, then just adapt it and find another way to do it. Of course. Yes, if it’s a three wheeler, it’s a three wheeler.

Jason Hellowell 15:48
Exactly. It’s no issue. Yeah.

Bill Gasiamis 15:51
So yeah, just before we move into all the things that you’ve tried, I know you’ve tried a few things. I love that, because we’ll talk about them all. So yeah, what’s family life like you? Your wife? Who else? Anyone else around? What kind of work were you doing? How busy are you? What things were you up to?

Jason Hellowell 16:11
I’m kind of lucky that I work for myself, and a lot of what I do is networked or, you know, WhatsApp or zoom, and I do go out and meet people occasionally. I have a trading company here in Dubai where we import and export certain things. So that’s that’s okay, not obviously, there was a long period of time where I wasn’t even sharp enough in my head to do things. But I’m back to, you know, I’m on a path of recovery, and I’m good on my way there, right, with some restrictions. Family life. I live here with my wife, my two kids have grown up.

Jason Hellowell 16:44
They’re both, you know, in their 20s, living in Copenhagen, hence why I went to Copenhagen for the Aten recept and, yeah, you know, try my best in the situation we have. We gotta take the best you can, because I’m still here, right? Yeah, as you well know, brain hemorrhages are one of those ones where the chance of living are very minimal.

Bill Gasiamis 17:03
Apparently, so less common but more fatal.

Jason Hellowell 17:07
Correct. From what I’ve read, 5% of people who have a brain hemorrhage survive.

Bill Gasiamis 17:13
Right, wow, that’s dramatic.

Jason Hellowell 17:16
We’re the lucky ones.

Bill Gasiamis 17:18
Mate, I’m very lucky. I’m blessed. I didn’t know that there were the numbers were that bad against Yeah, it is bad images, right? Okay, yeah. So how did you find out about etanercept?

Jason Hellowell 17:36
I think it was just online, you know, or very possibly, I’ll tell you what it was. I have a friend in Denmark who has another friend who had had a stroke, ischemic stroke, a little older than me, and he had heard about this being given in Denmark. And so then I started to research on it, because this friend sent me the information, and I watched all the videos on the website and so on and so forth. And then I spoke with these people in Denmark.

Jason Hellowell 18:06
And then we went and did it. You know, it was my opinion, my attitude was, what have I got to lose once you’ve understood that there is no risk with it, it’s either going to work or it’s not going to work, or it’s going to work a little bit, and maybe not totally, but there’s, there’s more benefits and more, you know, chances of doing something than not.

Bill Gasiamis 18:29
The doctors in Denmark, are they affiliated at all, in any way with Dr. Tobernick from Florida?

Jason Hellowell 18:35
Yes, they are the licensed providers of a 10 recept perist final, attend recept following the, what can we say, the guidelines of Dr. Tobernick.

Bill Gasiamis 18:46
The method.

Jason Hellowell 18:48
Yes.

Bill Gasiamis 18:49
Is there any, did you do any? Did you do any preliminary test examinations to determine whether you’re a candidate or not? Like, what was that procedure like, beforehand.

Jason Hellowell 19:02
Yes, I had to do blood tests to test if my blood or, sorry, if I’d ever had tuberculosis, and come back with the tests to show them that my bloods were good to receive etanose. And then when we got to the clinic, I went through a bunch of tests, you know, load questions and cognitivity, how you walk, just to give a benchmark, so that when you’d had the injection, they could check how you were doing after having had the injection.

Bill Gasiamis 19:34
And what’s that like for you? You fly in, you settle in in your family home with your with your kids, or whomever, and then head down do the injection. What was that like that whole day?

Jason Hellowell 19:47
So my kids live there, but we stayed in a hotel, so we flew into Copenhagen, checked into the hotel, and then the next day, my daughter drove us out to where the clinic was, and we. Sat down and did the test with Doc, Mister Michael, and yeah, had the first injection. And the first injection, I definitely felt a difference, like within four minutes, I told you, this cold feeling through the body, pain was gone. The main benefit was my voice. I have depth to my voice. You know, I sound powerful in my voice. Before it was very weak it was, I was struggling to get the words out.

Jason Hellowell 20:28
And I would trip over words. You know, I would have to pause and count and think and, you know, my brain was working to try and get all these words into place. Now it’s just there. So I’m very grateful for that first injection was like that. I thought maybe that there was some mobility benefits. I’m not sure if that’s a placebo effect. And my desire willpower, wanting to be better, because injection number two came, and now there was not really any big change after injection number two. And the question is, now, would I go back in July and do the third one? Why July?

Jason Hellowell 21:10
Because you’ve gotta wait two months or something for the third one. You do two within a 10 day period, so first one and then 10 days later, you do the second one. If the first one has given you effect, if you didn’t have effect on the first one, you may say, okay, it didn’t do anything. There was not enough inflammation to be able to get a result. I wouldn’t do number two, but I was like, I’ll try anything, right? So I’ll do it, and maybe I’ll do the same with number three, but I don’t know, given that there has been no drastic change since number two, I’m not so sure.

Bill Gasiamis 21:44
Yeah, fair enough. What is the cost per injection?

Jason Hellowell 21:51
I’m not sure if I can talk about that, because I think they differ from different places, so I don’t want to mislead people, but the first injection was 9000 euros, and I believe in the United States, it’s $9,000 for an injection, I believe. But again, it may differ per injection. I think the first one, second, 1/3, one have different prices in different places, but the average price is about $9,000 per injection.

Bill Gasiamis 22:16
Okay, or 9000 euros somewhere there. Yeah, they’re around. Yeah, there seems to be a really interesting conversation happening around thetacept. So in Australia, you can’t actually access ataricept unless it’s in a clinical trial, which is for a very small amount of people, and that’s just to determine its efficacy, because nobody’s doing clinical trials for a tonic atanacep to see whether it is efficacious for people who have had a neurological injury. So Right? It’s extremely difficult to find anyone to talk about it, etcetera.

Bill Gasiamis 22:51
Now, I recently received an email from Doctor Toby’s office telling me that they wanted to refute some of the findings of a trial that was called the pesto trial, that was that was done about a year and a half ago, and the results haven’t been released yet after a year that the study has finished, And I asked Dr Tober Nick’s office for an interview, and I they refused. I couldn’t get an interview with him, so I also tried to get an interview with the researchers on the pesto trial, the trial that concluded in mid 2420 24 which the results were supposed to be out by now.

Bill Gasiamis 23:41
And they also haven’t been able to confirm whether or not I’ll be able to get an interview with anybody. So there’s this whole kind of industry of keeping information close to their chest, rather than telling people you know what’s going on with this product, or whether or not it’s suitable how to access it and all this type of stuff. And I don’t understand exactly why.

Jason Hellowell 24:05
No, neither do I.

Bill Gasiamis 24:08
One of the challenges, then, is managing all of the comments on YouTube. Which is it, was it worked for me? It was great, or this is a scam. This is where we’re sitting. From your experience, I know that you had a positive outcome of sorts, but your hand didn’t, perhaps have any positive outcome. No, what is your sense of the entire of this entire thing? Like I know you, you kind of thought it can’t harm so I might as well give it a try.

Bill Gasiamis 24:46
But what’s the sense now that you’ve done it about this whole etanercept thing, miracle drug for some people, complete, demonic, ridiculous, terrible thing for others.

Jason Hellowell 25:00
Yeah, I think you know my reckoning is that the sooner you can do it, the better you know I was beyond 12 months. So I can’t remember. It was 16, 17 months after my stroke that it happened. So therefore has the inflammation reduced. And as we both know, every single stroke is different. Every single person’s reaction to the stroke is different. You know, how, how much you affected whatever, I’ve watched all the videos, I’ve listened all the interviews online. You know, it’s working for some people.

Jason Hellowell 25:39
So my belief I’m very pro-etanercept, as I said, I’ll try it if it works positive, if it doesn’t, I’ve not lost anything. But given that, it has worked for many people, and I can tell you, for me, it has given me clarity of brain. It has given me better speech and a pain relief to a degree that is unexplainable. Mobility. You know, my stroke happened on the left side of my brain in what’s called the motor strip.

Jason Hellowell 26:15
So my mobility is very affected. Is it 10 recept going to fix that? You know, I don’t know what I would be interested to know, because they say you can do these three injections, I’d be like, what if I took six injections? Would that have any bigger benefits? Is there a chance if I took more of it, that I would have a better effect? I don’t know. I would love to know those kind of things, and I will be following up to find out that.

Bill Gasiamis 26:42
Yeah, the good questions to ask, I feel like, what a tenner step does is it impacts in a positive way, inflammation, as opposed to brain damage. So once the brain is damaged, it’s damaged, it’s offline. You’re not getting that part back. Yeah, and if you have a lot of that, well, then your deficits are huge. But with regards to the other parts where there’s inflammation, and it’s taken some of the brain offline, just like the blood when it was touching on the brain cells. Yeah, that is, I think, what it impacts positively by reducing the the inflammation there.

Bill Gasiamis 27:15
Removing the chemical situation that occurs, and then allowing that part of the brain to come back online, and it does it instantly. The question is, is also, with regards to inflammation, you can re inflame the brain, poor diet, say you’re smoking and drinking, you can re inflame the brain, and then I imagine, yeah, undo the positive work that etanercept has done, have you? Yeah, give us a bit of an understanding of like, how you look after your body and brain these days. What do you do?

Jason Hellowell 27:50
You know, my wife has become my personal nutritionist, and she’s amazing. So I eat, eat healthily. I eat, I would say, 80% vegan, no dairy. You know, I do eat meat, and I do do, like, I say 80% I exercise every day. I’m pretty much in the gym every day. I still do physiotherapy, 345, times a week. Yeah, so a lot has changed, and it’s all focused on the path of recovery.

Bill Gasiamis 28:23
Yeah, so in regards to a vegan diet, I wouldn’t recommend a strict vegan diet, but I’m not a I’m not a doctor, so don’t take any of my recommendations or comments as advice, but but also, adding protein is really important to help the brain, so the fact that you’re having a high vegetable diet that includes protein and doesn’t include dairy, what I’m saying is, like, that’s a very anti inflammatory diet most of the time, correct, especially if you’re not overdoing it with lentils and things that have a lot of inflammatory kind of situations.

Bill Gasiamis 28:59
You know, people can some people can bloat if they lentils, beans and all that kind of stuff that tends to also impact the brain negatively. Okay, so you’ve tried some other things as well as etanercept. What else have you tried?

Jason Hellowell 29:15
So, pretty much, soon after I came from hospital, I did hyperbaric oxygen chamber, which I did three sessions. I did 30 sessions of hyperbaric oxygen chamber. Again, I had read that, you know, if you can increase the oxygen and you go to hyperbaric, it’s very good for healing. So will it heal the wound in the brain and so on. And can I give you a specific Yes, it did something. No, is it a part of my healing? Is it a part of where I am? It’s very possibly. You know, the more I read about it, the more I think I would go back and do it again. You know, it’s very good for you anyway.

Jason Hellowell 29:56
So there’s nothing to lose by doing it, but there’s no specific. I felt this different because of it, whereas with the tan receptor was a definite, I felt this, there we go.

Bill Gasiamis 30:10
Did you do the 10 seconds or the hyperbaric first?

Jason Hellowell 30:14
Hyperbaric first? Then I did so. I did hyperbaric first 30 sessions. I then went to Switzerland, to a particular clinic in Switzerland where they did TMS, transcranial micro magnetic stimulation. There I only did 10 sessions. I’ve since come to I’ve since met a doctor here in Dubai who does it too, and they want to do me 30 sessions, which I will possibly, you know, I’m likely to begin soon.

Bill Gasiamis 30:44
Okay, tell me about that. Yeah, that’s supposed to do.

Jason Hellowell 30:54
I think the whole idea is, so it’s a plate that comes to your head here, and you just feel this like a crackling. It’s not painful. It isn’t. It’s a little weird. If you imagine two electric things going together and you see that little flashing light that goes across it, and it’s like, if you put your finger between it, that’s the feeling that you have on your head kind of thing. And it’s supposed to, you know, if you go on to chat GPT and say, what, what are the best things I can do to recover mobility of my right arm having suffered a intercerebral hematoma, TMS is one of the top things that comes up.

Jason Hellowell 31:34
And you know whether you believe in AI or not, you know, AI is a source of information second to none. And so when you go in and throw these questions into chat GPT, it comes up with some fabulous responses, yeah. And so I, you know, I’m following those kind of things really.

Bill Gasiamis 31:52
Yeah. So TMS and ChatGPT. I mean, ChatGPT is just a search engine, and it’s really good at, of course, being really detailed search engine, and sometimes it’s not accurate. So if there is, so if there is some information there about TMS, it’s only because it’s starting to be discussed regularly, and there’s stuff on the internet about it, because church apt is trained on the entire internet, so that’s where it’s getting the information from.

Bill Gasiamis 32:19
So, I type in TMS to ChatGPT, which I just did, I said “What does TMS do?” It says it delivers magnetic pulses through a coil placed against the scalp. These pulses target specific areas of the brain, often the prefrontal cortex, to influence neural activity. Okay, great. Is that how it was described to you? Again, do you need to qualify for that? Do they need to assist you? How do you just? How do you do this?

Jason Hellowell 32:55
Well, I was in a particular clinic in Switzerland where it’s a neuro specialist, neuro rehabilitation clinic, and that was a part of their recovery suggestions to me. And yeah, I just it was a part of my process of recovery. You know that that was one of the things. And I have to say, the result of that was also tangible. It was a huge reduction in spasticity in my shoulder. I had frozen shoulder for a good six or seven months where I could not move at all. It was so painful. It was agonizing.

Jason Hellowell 33:31
And TMS definitely, relieved the spasticity. It has not gone fully, but that’s that is the reason that I will go back and try again to see if I keep going with TMS. Can I reduce more spasticity, and can I get to a level where I can train my hand more?

Bill Gasiamis 33:50
Did you notice it gradually getting better? Or did one day again you woke up and thought “Oh, my God, that’s gone.”

Jason Hellowell 33:57
Well, we did 10 sessions, and I did a lot of electro stimulation and training immediately after having had the TMS. And I would say it was a gradual feeling of reduction in spasticity, okay? And it was primarily the reduction in spasticity. And as you may know, I don’t know if you ever suffered spasticity, but the spasticity is a big blocker from being for being able to gain recovery, because the spasticity freezes you up so you can’t train you can’t build muscles.

Jason Hellowell 34:31
You can’t teach yourself, you know, because, okay, that part of my brain is dead, but Neuroplasticity continues, so you can teach yourself to use those parts of your body by using another part of your brain. Yes, if you work hard.

Bill Gasiamis 34:46
Yes, if, and I believe that spasticity released and gave you access to those muscles, correct? Yeah, hence Botox and hence other things to try and relieve spasticity in people’s arms, legs, shoulders. And all that kind of stuff. I know what you mean. Okay, so I did do Botox as well. Okay, we’ll talk about that as well then. So your your TMS, 10 sessions over what period of time?

Jason Hellowell 35:16
During a two to three week period.

Bill Gasiamis 35:19
Okay, how long do they sessions go for 10 minutes.

Jason Hellowell 35:25
Yeah, you just, you go into the room for 10 minutes, and then off you go to the rest of your rehab.

Bill Gasiamis 35:33
Does it make you feel strange, different at the time? Do you notice anything?

Jason Hellowell 35:38
No, you sit there. I mean, initially you’re a little bit apprehensive to this device going to head, but once you’ve felt the feeling, you go in and sit down and let it happen. You know, in hindsight, I would want to do that, you know, having been to visit this doctor in Dubai who would now like to do 30 sessions, I would like, you know, ideally, if it wasn’t so expensive, give me 30, you know, let me keep going. Okay, I’m very much. I’ll try anything.

Bill Gasiamis 36:07
I love it, I love it. Jason, so, hyperbaric first, TMS second, a tennership Third, yeah, and then yeah. What was the other one I mentioned you just, yeah, me too. You just mentioned that, just then.

Jason Hellowell 36:25
Yeah, Botox, you know, there’s a lot going on. So I did Botox. Probably I did the Botox before the TMS, actually. So I came out of hospital, I did hyperbaric oxygen, and then I did Botox, which was injected with ultrasound so that they could sense the movement of the muscle to make sure that we injected it into the right muscles that controlled, for example, the wrist and the hand and the shoulder, because the frozen shoulder was there as well.

Jason Hellowell 37:01
Because of that, think I felt a little change from there, but I went twice. Actually, I went back for a little top up as well. I’m not so sure about the but, you know, I do believe that Botox works. I’m not that keen on putting botulism into my body. Call me weird. Call me whatever. I’m not that keen on that a you know, that’s not my thing.

Bill Gasiamis 37:32
Not weird, fair enough. Yeah, people have had really negative reactions to Botox, which makes sense, because it’s a poison.

Jason Hellowell 37:41
Yeah. So they just in those words there, right? Botox is a poison. So why would I inject poison into my body? Yes, I know it’s going to relax the spasticity, but it’s also disabling the muscle. So therefore my training ability, I don’t think, is going to be that good, like right now, my grip. Can hold on to a rope, and I can pull weights up and down with my right hand.

Jason Hellowell 38:05
If I have the Botox, I can’t hold on to things, and I like to be able to hold on and be able to do some exercises, even though it doesn’t give me great mobility. You know, I can. You know, I can. I can get down, up there and move it around, and the hand closes, you can see, but the spasticity now it’s difficult for me to push it out.

Bill Gasiamis 38:23
So it just releases the hand. It doesn’t give you more ability to activate the different parts that you need to activate, to do the things that you need to do, correct, correct. Okay, so botulism. The reason they do it is because it’s a poison. But dose matters. Dose is really, yeah, right food is certain foods are okay, but if you overdo certain foods, well, it’s a poison. It’s just a dosage is over a longer period of time, and you, you know, you cause all these negative things by eating the wrong foods. And, yeah, it’s having the same outcome.

Bill Gasiamis 39:00
So that with botulism, I imagine, because of the way it’s absorbed into the body, the way that it’s dealt with in the different locations, etc, that’s why they can pinpoint accuracy, put it somewhere and do, quote, unquote, good with it instead of cause harm, dosage. But yeah, there have been negative outcomes with people receiving cosmetic Botox, and who knows under what conditions they received that and why they have negative effects. Everybody’s different. Yeah, agreed, agreed. So I understand that.

Bill Gasiamis 39:36
So as far as your personality goes, you’re really interesting kind of guy, because let’s talk about the negative stuff, a little bit like, didn’t you have bad days? Weren’t you? Yeah, struggling having, you know, depressive thoughts or anything like that. Tell me about that side of it, not just the Woo, woo, everything’s fantastic. I’m going to go for it. Stuff. Yeah. What you’re human, right?

Jason Hellowell 40:02
Absolutely, absolutely. And, yeah, of course, you know, you have very bad days where you wake up crying in the morning and everything’s, you know, I can get myself crying now if you want, but it’s an emotional trip, right? The whole thing is an emotional trip. And I’ve, I’ve gone to therapy, you know, I have a friend who’s a holistic life coach, and she’s done a lot of work with me, working to understand things about myself, to be able to be stronger in on the path to recovery. You know how you use the vocabulary of what when you talk about yourself in this situation.

Jason Hellowell 40:47
The vocabulary you use about your situation, so that you’re not being derogatory to yourself? You know I’m going to say it now. You know I would say, Geez, I’m handicapped, or I’m disabled, or whatever. Well, no, you’re not actually. You’re just on a path to recovery, and there’s nothing you know. You’re absolutely fine, you you, you are normal. I used to say when I’m normal again. And she said to me, you can’t say that, because you are normal. There’s nothing wrong with you. You do. You’re just on a path to recovery. You’ve just got to recover.

Jason Hellowell 41:22
And we will work on that conversation, and we’ll go deep inside and dig out things and remove barriers and emotional things that you work on to to, it’s called the journey to, to help you be stronger, you know, yeah, but yeah, definitely, I’ve had black moments. I mean, come on, you can’t you know the the the not being able to do the things you would normally do. I mentioned riding motorcycles, water skiing, skiing, all these wonderful things that you can’t do that has, that has an emotional burden, no question.

Bill Gasiamis 41:58
Your, you know, your is it? Your predisposition to be problem solving, looking for solutions, rather than focusing on, again, on the negative. But as happens with a lot of people, when you’re in a stroke situation, the negatives tend to, you know, rear the rack of the heads. And let you know that things a little bit shit at the moment, and you’ve got to, you’re going to dig deep, and you’ve got to find new ways to overcome what’s going on in your life, right? 100%

Jason Hellowell 42:32
Yeah, I am definitely a you know, solution guy. I will look for, I believe that there’s a solution to everything. We just have to find the way. I believe that “Where there’s a will, there’s a way.” And if you work hard, you will get to the top of the hill, and that is the only result that I’m looking for, but the easy option, in many cases, is to just sit back and accept and “Oh, this is my situation.” I’m going to sit on the sofa, I’m going to eat the wrong food, I can’t exercise, I can’t walk, so I’m going to sit in a wheelchair. And that’s me done. Well, I’m not gonna accept that. I ain’t having that at all, no way.

Bill Gasiamis 43:26
And it seems like the easy route, but it’s not because it creates a harder life, still, still. It just makes things more complicated, difficult. And, yeah, yeah, it’s a different kind of hard. It’s a hard down the road rather than a hard effort, consistency, yeah, eating well, changing your habits, changing the way you speak to yourself, your behavior and all of that stuff. Yeah, what fully agreed? Maybe this is inaccurate, but I’m going to ask it like this anyway.

Bill Gasiamis 43:58
And then we can address it. Why is? Why is your wife not the person that you can sit down and talk to about those things that your life coach can talk to you about, as in, what does a third person bring into the conversation that you’re not getting in your regular daily life?

Jason Hellowell 44:19
Yeah, you know, I mean, I can definitely have deep conversations with my wife and my family and my kids and everything. That’s not a problem. But I think when you bring in a person who is professionally educated and has tools to work on understanding and helping you to come through these things, barriers, emotional barriers, that you maybe even don’t forget the stroke in general.

Jason Hellowell 44:43
I think talking to a third party who has tools and methodologies to help you to discover how to be a bit more you know, in line with yourself is, yeah, it’s fabulous, amazing. That my therapist is called Emma, and she’s genius.

Bill Gasiamis 45:06
Professional, Tools. That’s why, because your wife is your wife, and her profession is not to find ways and tools to get you over the line. It’s to provide emotional support, household support, you know, all the things you need to cook a meal, to take it to an appointment, to do all these sorts of things. And she offers great value, but she’s, it’s not her, it’s not the way she makes her living.

Jason Hellowell 45:33
That’s right, absolutely. And you know, like, yeah, professional person who is trained. And I’ll be honest with you, you know, I go to these sessions, the session is two hours long. If I let’s say I’ve done 11 sessions out of the 11 sessions, I would say nine or 10 of them, I have probably bald with tears for an hour and 45 minutes, like uncontrollable emotional release that’s not going to happen when you talk to your wife.

Jason Hellowell 46:08
This is people who have an ability and a tools and an emotional a spiritual connection. I don’t know what you want to call it, but they know how to get you to be honest with yourself, and I think that’s one of the biggest problems so many people have. They lie to themselves. They don’t face the truth.

Bill Gasiamis 46:32
Yeah, so these releases that you’re having are these long-held, pent-up things from your past that you didn’t know were there, or are these things that you professionally avoided confronting while it was okay and you didn’t need to confront it.

Jason Hellowell 46:48
And no, a lot of it is definitely, you know, past things that have happened in your life that you have, what I call boxed and shelved, you know, emotions that you have boxed and parked, and you just carry on and until you go back and dig them out, deal with them, face them. And as Emma says, embrace them with love. You can never get rid of them, and they’ll remain a blockage in your system or in your journey.

Bill Gasiamis 47:17
How are they blocking your life before stroke that you weren’t aware of and how have they released you now that you’re aware of them?

Jason Hellowell 47:23
I can’t tell you that because I didn’t, you know. I can’t tell you that because I wasn’t aware at that time that that’s where it was. But could that be an added reason for what’s happened? Who knows? You know, I just don’t know. I can’t explain it, but I can tell you it’s been good to do it.

Bill Gasiamis 47:41
Yeah, emotional trauma is definitely going to considered a a negative health risk to people’s outcomes, stroke, heart attack, cancers, like it’s all connected, because you change the chemistry of your body when you’re in constant emotional stress, turmoil, pain, suffering, and if you don’t run it and you don’t release it and let it go, well then it constantly impacts the body negatively.

Bill Gasiamis 48:11
So that’s really important. 100% 100% and it sounds like because this is the thing you’ve bragged about more than any of the medical interventions, it sounds like the thing that was one of the keys to, well, your recovery, and I’m not talking about being able to move your hand better, but that other part of recovery that’s in here and in your heart.

Jason Hellowell 48:36
You know, As I say to many people, the biggest challenge with the result of my stroke is the mental fight you have with yourself, within yourself. You know you have the physical issues, but it’s that willpower to carry on that is the challenge, and to have that mental strength is is one of the challenges. And therefore, I think you can take medicine and you can do medical things, and they’re obviously a part of the process.

Jason Hellowell 49:14
And you hope that they’re going to give you something. But that emotional control to manage the mental state of mind is, you know, you not unquestionably, one of the biggest things you have to deal with.

Bill Gasiamis 49:29
Is that what you refer to, what people would refer to as building resilience.

Jason Hellowell 49:37
Yeah, I guess, I guess partially Yes, yes. But building the resilience to continue with a will and a drive and a self motivation that you will win this.

Bill Gasiamis 49:51
Yeah, I, I went and did a whole bunch of coaching at the beginning of my journey as well 2012 right, man for about. Two years solid, and then counseling from a psychologist at the same time. So psychologist was more about helping me with the thinking, how i i did my thinking, and make me aware of the things that I was doing, saying acting, that were perhaps getting in my way. And then the Yeah, the coaching was more about how to take action on the new ways I wanted to think, the action on the new ways I wanted to behave, talk to myself, etc.

Bill Gasiamis 50:28
They combined, right, and they were the they were the biggest part of the transformation. That was Bill. Because the people that watch this podcast who’ve never met the bill before, the stroke at 37 that was a completely different person. I mean, we inhabit the same body, but they were completely two different people.

Jason Hellowell 50:51
In what way do you feel that you’ve changed?

Bill Gasiamis 50:54
Well, the old me would never do a podcast, would never write a book, would never have met 350 people from all around the planet that had gone through something similar to find a way to make sense of it, transform it, battle it out, overcome it. I wasn’t a problem solver. I was a problem finder, and that was about most of find a shitload of problems and then get stuck there and go “Oh my god, I’m overwhelmed. I’ve got all these problems.” And what I didn’t realize was, I was focusing on all the problems rather than all the solutions.

Bill Gasiamis 51:32
And I was and that created more problems in my head, in my heart, sure, in my entire life. And I felt like the walls were sort of coming in around me, and I find myself there sometimes as well. Still these days, okay, because the stroke makes me wake up in the morning like I did this morning with a headache that I’ve had for about, I don’t know, the last three or four weeks, on and off. Every second or third day, it kind of dissipates and then it comes back again.

Jason Hellowell 52:01
Have you tried to 10 recept yourself?

Bill Gasiamis 52:03
I haven’t tried it yet. I haven’t tried I haven’t I haven’t gone down that path.

Jason Hellowell 52:09
I thought that would be interesting for you.

Bill Gasiamis 52:11
I mean, on the path of kind of trying to convince myself whether I should go down that route. And the challenge I have with it is that there is no and maybe this is, again, that thing you know, where I’m getting in my own way. The challenge I have with it is that there’s no way of knowing whether you’re the right candidate or not, where some of the people I have interviewed about HBot will go through the process of determining whether you’re a candidate for H bot, and whether you’ll get results, which is the most important thing.

Bill Gasiamis 52:45
Because what that does is that minimizes the risk of people who haven’t got 20 grand or 30 grand to put it down and then get no result for it. And I know sure a lot of stroke survivors might not be in a situation where they’re comfortable financially, and especially when you’ve had a stroke and you can’t work, and you’re working a job, you know, finances an issue instantly, right?

Jason Hellowell 53:10
Sure, and I heard you on one of your other podcasts with people talking about insurance. You know, insurances are good. I was luckily insured, so the hospital was covered by the insurance. And the insurance has been fabulous on that level, but when it comes to being an outpatient, having left hospital as an outpatient, you need physiotherapy for as long as it may need.

Jason Hellowell 53:32
And these insurances have a limit to how much they will pay for physiotherapy or chiropractic or occupational therapy, and that i is, is for many people a problem. And, you know, of course, I feel the expense, you know, it’s an expensive game. This whole thing is very expensive.

Bill Gasiamis 53:50
Yeah, I’m at the chiropractor, I’m at the my therapist, I’m at the acupuncturist, I’m at all those people. So regularly, you’ve tried acupuncture.

Jason Hellowell 54:01
You mentioned acupuncture, so I had to bring that one in too. So had a very, very good acupuncturist from who was from Switzerland, called Andrew, and he came to my house and we did acupuncture, and I’m talking needles across the top of the head, with electricity and all these things now, was that a part of my reasons for recovery at the time? I don’t know his his healing, his pain removal was pretty intense and very good. It wasn’t permanent, unfortunate, yeah. But acupuncture was also a good one.

Jason Hellowell 54:37
And I’ve watched, I don’t if you ever watched the video on YouTube called “999 Needles” or something.

Bill Gasiamis 54:43
No.

Jason Hellowell 54:44
Do you watch that? It’s about an American guy who unfortunately passed, but he was very affected by his stroke, and he went to China for acupuncture, and they managed to do some pretty intense recovery on him. And he number of years later, he had another stroke and didn’t. To survive, but that was an interesting one.

Bill Gasiamis 55:03
Maybe you’ll send me the link, it will include it in the show notes, and then we’ll get people to go have a look at it.

Jason Hellowell 55:10
Yeah, maybe not sure if I should reference to that. Maybe Yeah, I can do Yeah. But yeah, interesting acupuncture is one. What else have I tried? I feel like I’ve tried everything, and it sounds like except stem cells. Stem cells? No, I’m not going to stop. Yeah. Have you heard about stem cells? What do you think to that?

Bill Gasiamis 55:34
I have but nothing positive in that. Again, stem cells seem to be not negative, so they don’t tend to cause negative side effects. The challenge with them is, how do you get them into the location that you want them to go, and how do you ensure that they target the part of the brain that they can that they need to target, and and where this Where do the stem cells come from, and which ones are the best. I know there’s a bit of research and little bit of work being done, but again, in the Western countries, there is this seems to be a ethical issue around stem cells.

Bill Gasiamis 56:10
And I know in Panama, there seems to be more work done on stem cell research than anywhere else. And I think the reason is because the government is a little more relaxed about the so called ethical issues around stem cells, and when they come from, and it’s a little it’s one of those places in the world where there’s a little less what’s the word government into interference into.

Jason Hellowell 56:35
Red tape.

Bill Gasiamis 56:35
Yeah. So I’ve had somebody who I know who’s had stem cells in the hip before and told me that they’ve got good results in pain relief, etc. But again, yeah, it’s about it’s a bit of an arthritic hip, so it doesn’t remove the damage that the arthritis has caused. It somehow seems to regenerate supportive tissues or or structures that make the pain ease, but again, it also wears off. It doesn’t last forever, similar to Botox, similar to acupuncture, the temporary resolutions.

Jason Hellowell 57:13
Fixes. Okay, interesting, yeah, you know, the story that you talked about one day in your podcast with this drug that they found, DD-970, I think it’s called.

Bill Gasiamis 57:28
Yeah, the trial that was done recently.

Jason Hellowell 57:32
Yeah, Dr. Tom, something, in UCLA.

Bill Gasiamis 57:36
They showed it in UCLA and it showed positive results in mice that they can reduce inflammation in the brain with a pill, yeah, tablet.

Jason Hellowell 57:48
Yeah. And, you know, then there’s neuro link in all of these things. Basically, for me, those things all provide a positive outlook that, and with AI and science now and technology, I’m quite confident that we will find something soon, not, not, not too much in the distant future, that is going to be positively able to help with mobility, over, over and above, physical training. You know, I definitely believe in physical training.

Bill Gasiamis 58:24
I do believe there was some groundbreaking work done in people with quadriplegia and paraplegia, where they were able to bypass the damaged part of the spine, from the top of the spine to the path underneath the damaged area of the spine, to take the signals and send them further down the spine, bypassing the area that was damaged. Again, not massive inroads, but results, some kind of theoretical results, anyhow, being able to sort of show that.

Bill Gasiamis 58:57
And if you think about people who have lost an arm, they have a robotic arm that they can open and close and twist and grab things with it, kind of is the similar type of thing, yeah. But somehow they they get those signals to transfer from the part that’s remaining to another device and create a create a movement, create an outcome.

Jason Hellowell 59:26
Yeah, I that there’s got to be a way. I have this dream that we could create a form of poly filler, or silicon filler, that we could go in and that silicon filler can fill the gap. Because if I showed you the scan of my brain, there is, there are definite black areas, right? Yeah. And you know, you have this vision that if you could just go in with a poly filler and fill it, then that material that has gone in could carry the neurons, and it would like a plant grow new roots through that piece. At the moment, the black.

Jason Hellowell 1:00:00
App is unable to grow. It needs to be reconnected. Put some poly filler in there, and Let’s reconnect the wires that are in between. Surely, that’s possible in today’s science. You know what I’m saying? It’s like, I have this dream that we could create, that it’s I like the idea.

Bill Gasiamis 1:00:15
Love him or hate him, we need another Elon Musk type character to get that product under development. I know with neural link, there’s been a bit of a challenge. A cousin of mine is a neurologist, and he spoke to me about the challenges with stuff like neural link, because the implants that they put into the brain to sort of generate that additional function with the implant chip, they say that those prongs that they put into the cavity of the brain, or wherever they go to sort of embed.

Bill Gasiamis 1:00:49
They say that there is a challenge with them in that they get ejected from the area that they were installed over a period of time, and reinstating and re intervening with the brain, you know, creates additional challenges and risks. So not as, not as clear cut as what it might have been like, thought up for be like early on, long term, people who are being studied with it seem to have had this, what’s the word, like, like, a disconnection with the device? And, right? They’re not certain yet how to address it.

Jason Hellowell 1:01:30
You know, hence my thinking that if you could have this silicon filler that was able to carry the, you know, I don’t know, like a special potting potty that allows growth for the neurons and wires to grow through, slowly, must be possible.

Bill Gasiamis 1:01:49
Conductive of electrical type.

Jason Hellowell 1:01:51
That was the word I was looking for.

Bill Gasiamis 1:01:53
Yeah.

Jason Hellowell 1:01:54
My lack of English words, there you go. Even though I’m English.

Bill Gasiamis 1:01:59
Now you’re doing alright. You’re doing alright. Well, that’s really interesting. So we’ve had a very interesting conversation. What? There’s people listening here? You know, the title of this podcast is going to see, going to be some like, he’s tried everything, or he’s tried this. He’s tried that. People are going to jump on and they’re going to have a listen, like, what would you sort of say to people who are just going through what you and I have been through?

Bill Gasiamis 1:02:28
Because some people are finding this podcast in their hospital beds just after they’ve had a stroke. So what do we tell people, I wish I had that journey?

Jason Hellowell 1:02:37
Well, firstly, I wish I’d done that and found it the when I was in hospital, you know, I What would I say? You know, hopefully you have somebody who cares for you and loves you, which I had, and does the research. I think I would have liked that hospitals and doctors who were treating me at the time were more open to telling you about all these different opportunities or possibilities that there are, you know, instead of just saying you’ve got to go down the path of physiotherapy and occupational therapy and repetitive movement and data you know.

Jason Hellowell 1:03:20
That’s what you’ve got to do. I would have liked somebody to tell me of all of these different things we can do now, of course, then I went to this place in Switzerland, and they had of all those things very expensive, so prohibitive to many people because of the price. If you can afford it, great. The sooner you go to those places, the better it is. I think with with a stroke, the quicker. If I knew that, you know, those early six to seven to 10 months were, how important they were, I may have made more of an effort, you know.

Jason Hellowell 1:03:58
Because at the time you’re very neural fatigue. You have fatigue. You’re tired. You know, I’m not as tired now as I was. So I can fight harder. But the reality is, had I known that and pushed harder in those first six months, could I have made a difference? Now, I did push quite hard. We did do a lot of work, and I think there is also a natural recovery process that goes on. I believe that even, you know, I went to one doctor who said to me, you know, once you’ve passed your six months to one year, you’ve pretty much done the recovery you’re going to do.

Jason Hellowell 1:04:36
That was probably the worst statement any doctor could ever tell me, because that really knocks you back. I agree you who shit? You know, luckily, my wife and other people kept me going. You can’t say that, because there’s always hope and there’s always, you know, the more effort you make, the more chances you are going to recover. You. You will recover. You just have to work hard and believe.

Bill Gasiamis 1:05:04
And you might recover with an arm that doesn’t work. You might recover with a leg that doesn’t work, yeah, but that after that six month period that they keep talking about, I know why they bloody say that. But after that six month period is a, you know, they you know, they call it the plateau. People hit the plateau, yeah, but the reality is, that’s when things become nuanced.

Bill Gasiamis 1:05:26
You start to focus on little bits of the recovery that you didn’t get in the first six months, that might also include the emotional recovery, because that’s a part of the recovery that people gloss over and overlook.

Jason Hellowell 1:05:42
100% you know, you talk about plateau. I think I’ve hit multiple plateaus. You know, some days I’ll wake up and I will feel that my leg is less effective than it was two days before. Now, the way I deal with that is, as you said, every time there is a difference, it’s a difference. It may be a backwards movement, but that backwards movement may well be the body just going, hold on a second. We’ll just recheck this passage before we go there, and then two weeks later, like this morning, when I went for my walk, my walk was so much better than it was two days ago.

Jason Hellowell 1:06:22
But then I’m going to say two, three weeks ago, my walk was very good, and it kind of went down. And I feel that every time I hit those plateaus and I have these sort of down moments, the next step up is a bigger one. So all of these plateaus are bounding levels where you improve, you might go back, you improve, but every time you improve, it’s that little bit better than it was. Yeah, that’s my result and feeling of it. But the plateau is definitely an issue, and it’s also one of the spaces where you’ve got to be really mentally strong, because it will, it smacks you back.

Bill Gasiamis 1:06:58
Yeah, you kind of got to anticipate it a little bit it might come, if it does, don’t panic, just yeah, let it go, let it do its thing, and then reassess a couple of weeks after this supposed plateau, or whatever has passed.

Jason Hellowell 1:07:14
Exactly, and you, I think that’s one of the things that I would say to somebody now, and I’ve spoken to a lot of people who I’ve found online, stroke survivors. I’ve was a couple of people here, stroke survivors, you know myself and this guy, Galinda. He’s a fighter. I mean, he’s a fighter, unbelievable fighter. And you know, the happiness of of being alive is key. You have to be focused on I’m still here. It, you know, it’s easy for me to say, because I have my speech.

Jason Hellowell 1:07:50
And you know, if you look at me now, I like you. We work. We can’t tell that we’ve had strokes, you know, severe brain hemorrhage, and that’s difficult to say to somebody who maybe has aphasia and many other issues where they can’t communicate or whatever. That’s a bigger challenge, right? But you’ve gotta stay positive. You’ve gotta believe that you can.

Bill Gasiamis 1:08:12
Yeah, I agree with that.

Jason Hellowell 1:08:15
I think an Etanercept for people with aphasia is one of the bigger things that works is it is aphasia speech as from what I’ve seen.

Bill Gasiamis 1:08:28
I interviewed Lorenzo a few weeks ago, and we spoke about his AVM brain hemorrhage, like me, and as a result, his vision is impacted, and he used to be a tattoo artist, and, you know, he’s lost that ability. And for a stir, for a laugh, I sort of said “Why? Why don’t you see if somebody would be willing for you to do a tattoo from a blind person?”

Bill Gasiamis 1:08:58
It would have to be the first tattoo from a blind person, and in this day and age with the amount of body art that people have, yeah, surely that could be interesting.

Jason Hellowell 1:09:10
And what did he say?

Bill Gasiamis 1:09:11
Yeah, it was like his eyes lit up, like you could see that he kind of had a moment of, like, I don’t know if it’s a thing, but if somebody wants to be tattooed by me, yeah, I’ll, I’ll tattoo them, yeah. I mean, you can create, yeah, you can create a stencil and work within the stencil so you don’t go all over the arm or all over the leg or wherever, and, yeah, and look at that piece of art behind that piece of art. I’ve had a lot of artists who said they can’t be they can’t paint anymore because they can’t see properly, or their hand, or their hand trembles, or they can’t hold the brush properly.

Bill Gasiamis 1:09:47
Like, if we look at that piece of art behind you, who cares? You’re still an artist. You still have that capability of understanding how things go on a canvas, color and texture, all these things. I don’t even know what the words are, so, yeah, I kind of want to encourage people to take their identity and bring it and combine it with their stroke identity. So they’re not just one or the other. They are both of them, and they are weird and strange and different because they’re tattooing blind, or they’re painting blind, or whatever they’re doing like to me.

Bill Gasiamis 1:10:28
I don’t want people to say, I can’t be this anymore, because this happened to me. It’s not great. It should be one or the other. I think it should be every part of you combined into this thing that you’re going to move forward as and you need to develop that. I don’t let anyone tell you that you have to stop now, like sports people who are in the Paralympics, who win gold medals after they’ve had a massive car crash or, do you know?

Jason Hellowell 1:11:01
Yeah, absolutely. You know, I think for me, you know, I say to myself, this is one of those challenges that been thrown at you to teach you a bunch of things to make you a better person. You know, my has my personality changed? I don’t think so, but maybe other people tell you I have, but I definitely am more conscious of things and the way of being than I potentially would be before. Yeah, the diet and the health and all of these things you’ve got to carry on to do.

Bill Gasiamis 1:11:36
Yeah, and not better, as in you were bad or terrible or worse, before, but more evolved, more wise, more knowledgeable, you know, like 100%

Jason Hellowell 1:11:49
you know, I would like to create a charity to help other people in the similar situation to me. You know, I want to, I would love for people who can’t afford the tools to recover. It would be great to have a foundation that could, even if it’s only 20 people in my vicinity, or that I can find out about that I can help them on the path to recovery. I would love to do that. And I have a few tricks that I would like to you know, if I could find somebody to invest a few million dollars into something I can make a way to do this. So it’s very possible to do that.

Bill Gasiamis 1:12:25
Yeah, and some philanthropy that would be amazing as well. That’s my hope for the podcast, is say that I get some sponsors and or I get some, you know, decent revenue from from YouTube or wherever. You know that would be my hope. That hasn’t happened yet. But you know, you never know I should do.

Jason Hellowell 1:12:45
I mean, you it’s a great podcast, and you know, I, I fell across it. There’s a lady in America who’s a stroke therapist, occupational therapist. I forget right now the name of the lady and I was on there. And when you look at it on YouTube, it, you know, and you search for these things, you came up as one thing. And then I read, watched a couple of your podcasts, and when you talked about it and recept, and I thought, I just drop you that note and say, I’ve tried everything, pretty much, or I’ve tried most of the things.

Jason Hellowell 1:13:20
Might be as a worthy conversation, you know. And I would love to partake in conversations with other people too, you know, where we build a conversation with people, to encourage people to be stronger emotionally. Because I think the emotional and mental fight is going to be the biggest one for everybody.

Bill Gasiamis 1:13:38
I tend to agree with you, yeah.

Jason Hellowell 1:13:40
And I think, if in conversation, you can help somebody giving them back up. And, you know, a conversation with somebody is a wonderful thing, isn’t?

Bill Gasiamis 1:13:50
Man, it’s the best, I mean, it’s literally been the key behind my own recovery without this podcast, I’m not sure where I would be in the mental health space, in the emotional space, because even though I can’t represent the broad spectrum of stroke, because, you know, I look the way I look, and my experience is my own. Yeah, the people that I’ve had, they’ve arranged every version of stroke, from aphasia and actually not being able to talk at all while we’re on the podcast.

Bill Gasiamis 1:14:23
Yeah, to people who can’t walk, to people who have had a stroke and don’t look feel talk about it in any way that it impacted them negatively, like there’s a one in 350 of them, but there is at least one person who had the medication immediately, and everything went away and went better, and they don’t have any deficits to deal with and overcome, which is like, amazing.

Jason Hellowell 1:14:51
The few of us, that’s a friend of mine’s mother, the other day. A friend of mine’s mother had that and was, you know, straight away and has no effects. And I’m so happy for them, and that’s amazing. I wish. You know, you kind of wish, don’t you? There is always that fight in your head when you look, in my case, you look back and go, Why didn’t I see that email? Why didn’t I do this? And you can beat yourself up for days on end. Changes it ain’t going to get you nothing. Not going to give me nothing, if you can’t do anything about it, pack it.

Bill Gasiamis 1:15:23
Yeah. What I love is that the I looked at the stats on the YouTube channel and the people listen to the podcast is about 60% men, 40% women. Now I didn’t expect that. I didn’t expect that men would be listening. Now they’re not the people who reach out the most. It’s a lot of women who reach out and do more of the conversation side, but the men are paying attention listening into the background. So congratulations to everybody who pays attention and listens. Congratulations to those blokes who are paying attention or listening to us.

Bill Gasiamis 1:15:57
Thank you for being on the podcast and reaching out. My pleasure, and Yeah, my pleasure. And I’m really excited by the amount of people who reach out and say I’d love to be on the podcast, and I don’t have to reach out to them and find them now, that is exactly why I created this community, to create a platform for people to come on board. And what it’s helped me to do is be a connector every, every so often.

Bill Gasiamis 1:16:20
I find out who something from somebody that I remember, that I can pass on to somebody else, and that that’s a life change. Very cool, decreases the time that we that it takes to gain new information. And yeah, it’s brilliant, I love it. Thank you so much for being in my podcast.

Jason Hellowell 1:16:39
Amazing, my pleasure. Thank you for having me on board. It’s, you know, it’s an interesting topic, isn’t it, and one that affects a lot of people. So we need to spread the word, spread the word, like I said, if, if only the medical practitioners spread the word about alternative things more openly. It could be different.

Bill Gasiamis 1:16:59
It could be let’s hope. Let’s hope that things change and continue to improve for stroke survivors, mate, thank you so much for joining me.

Jason Hellowell 1:17:09
My pleasure, all the best. Thank you very much.

Bill Gasiamis 1:17:12
That brings us to the end of this remarkable conversation with Jason, a man who faced a life altering brain hemorrhage, lost his mobility and speech, and then set out to reclaim what he could by trying nearly everything he could find, from hyperbaric oxygen to etanercept in Denmark, from frozen shoulder to holistic coaching sessions that moved him to tears. Jason reminds us that the recovery of brain hemorrhage isn’t just about medical treatment. It’s about the courage to keep showing up even when progress is slow and the emotional toll is high.

Bill Gasiamis 1:17:47
If this episode resonated with you, please let me know. Like comment and subscribe on YouTube or leave a review wherever you’re listening, and remember even just pressing play or listening through the ads helps this podcast stay alive. If you’d like to go deeper in supporting this community and help me keep sharing stories like Jason’s, please visit patreon.com/recoveryafterstroke.

Bill Gasiamis 1:18:13
Your contribution helps ensure that the next stroke survivor, maybe one Just days into the recovery, finds hope, connection and possibility right when they need it most. Thanks again for being here, wherever you are on your recovery journey, remember your stroke isn’t over, and your next breakthrough might be closer than you think. I’ll catch you in the next episode.

Intro 1:18:35
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 1:19:04
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Intro 1:19:29
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The post From Paralysis to Progress: One Man’s Quest to Recover After Brain Hemorrhage appeared first on Recovery After Stroke.

Fibromuscular dysplasia (FMD) is a rare condition that can silently impact arteries and, in some cases, lead to life-changing events like stroke. While not commonly discussed in stroke recovery circles, it’s a diagnosis that stroke survivors and their caregivers should be aware of, especially when the stroke occurs in a younger individual or without traditional risk factors.

Fibromuscular dysplasia is a condition that causes abnormal cell growth in the walls of medium-sized arteries, most commonly affecting the carotid artery (in the neck) and renal artery (leading to the kidneys). This abnormal growth can lead to areas of narrowing (stenosis), aneurysm, or artery dissection—all of which may disrupt blood flow and increase stroke risk.

When FMD impacts the carotid artery, it can cause weakness or tearing in the arterial wall, leading to ischemic strokes or transient ischemic attacks (TIAs).

Although strokes are more often associated with high blood pressure or heart disease, FMD presents a unique stroke risk, especially in younger, otherwise healthy individuals. Many stroke survivors who are ultimately diagnosed with FMD were unaware they even had the condition.

• Frequent, unexplained headaches
• Dizziness or visual disturbances
• Pulsatile tinnitus (whooshing sounds in the ear)
• Sudden numbness or weakness (often a sign of a TIA or stroke)
• Right-side paralysis if the left carotid artery is involved
  

FMD is often discovered after a stroke or TIA, through imaging like:

• CT angiography
• MR angiography
• Duplex ultrasound
  

These tests can detect arterial abnormalities, helping clinicians make a definitive fibromuscular dysplasia diagnosis.

In some cases, FMD may be coded in medical records using ICD-10 codes such as I77.3 (fibromuscular dysplasia).

After a stroke caused by FMD, recovery may involve:

• Neurological rehabilitation
• Speech therapy for aphasia
• Occupational therapy to address cognitive and sensory deficits
• Ongoing vascular monitoring with FMD imaging
  

Because FMD is chronic, regular imaging of the carotid and renal arteries is essential to monitor for new arterial changes or dissections.

While there’s no official fibromuscular dysplasia diet, stroke survivors are typically encouraged to follow a heart-healthy, anti-inflammatory diet. This may include:

• Whole grains
• Leafy greens
• Healthy fats (like olive oil and avocado)
• Limited processed sugar and salt
  

These dietary choices support vascular health and reduce stroke recurrence risk.

Many people with FMD live long, full lives. However, outcomes depend on early detection and whether complications like stroke, arterial dissection, or aneurysm rupture occur. With proper monitoring, lifestyle adjustments, and care from a neurologist or vascular specialist, stroke survivors with FMD can continue progressing in their recovery.

A stroke caused by fibromuscular dysplasia can feel like it comes out of nowhere. That’s why education, awareness, and self-advocacy matter. If you’ve had a stroke and don’t know why, or if your medical team suspects arterial dissection, ask about FMD and request thorough vascular imaging.

Whether you’re adjusting to new deficits, navigating medical scans, or simply trying to understand what happened to your body, know that you’re not alone. FMD may be rare, but with knowledge and support, you can regain your strength, protect your health, and continue moving forward.

Fibromuscular dysplasia (FMD) led to Tara’s stroke. Her story of loss, recovery, and rediscovery offers hope to stroke survivors everywhere.

Support The Recovery After Stroke on Patreon

Highlights

00:00 Tara Miller’s Introduction and Initial Stroke Experience
05:46 In a Blink of an Eye: Tara’s Sudden Stroke After Mysterious Illness
19:39 Fibromuscular Dysplasia (FMD)
30:33 Stroke Follow-Up: Monitoring, Not Intervention
41:06 The Clock Test: A Stroke Survivor’s Recurring Challenge
44:12 Invisible Deficits and the Power of Peer Support
51:09 Healing in the Saddle: Tara’s Journey with Sierra
1:02:45 Quieting the Mind: Tara on Naps and Brain Fatigue
1:08:39 Parenting Through Stroke: Missed Moments and Long-Term Understanding
1:12:15 Small Wins, Big Heart: Tara’s Stroke Recovery Journey

Transcript:

Bill Gasiamis 0:00
Before we begin today, I want to say thank you to everyone who’s left a comment, written a review, supported the show on Patreon, clicked the YouTube super thanks button, bought a copy of my book, or even just chose not to skip the ads. You’re the reason the podcast reaches someone in the middle of their darkest moment. You’re helping them feel seen. You’re helping me keep this going. Today’s conversation is one of those revelations, the kind that stays with you.

Bill Gasiamis 0:29
Tara Miller was 46 when she had a stroke, seemingly out of nowhere, she wasn’t sick, she wasn’t at risk, and yet, a tear in her artery caused by a rare condition called fibromuscular dysplasia, changed everything from a busy career and parenting two daughters to losing her ability to drive, to cope with numbers or to handle the spreadsheet, Tara’s life didn’t just pause it reset.

Bill Gasiamis 0:58
What followed was a slow and deeply personal process of rediscovery through invisible deficits, tias and even a collapsed lung, Tara found new strength in volunteering, horseback riding and learning to show herself the patience she never had before. If you’re in the middle of rebuilding yourself after stroke, this episode is for you. Let’s dive in. Tara Miller, welcome to the podcast.

Tara Miller 1:27
Thank you, Bill. Thanks for having me.

Bill Gasiamis 1:30
Thank you for joining me. I look forward to our conversation. Tell me a little bit about what it was like for you before stroke.

Tara Miller 1:42
Before stroke seems so long ago to me, only three and a half years ago, but a lifetime ago, to be honest with you, before stroke, busy, Busy, busy, I had a career, and he mean, we human resources of payroll. I, I am a mom of two daughters and a wife, but we were busy with life at the time of my stroke in 2021 it was COVID, so I was working at home, but generally I wasn’t at a person that would work at home.

Tara Miller 2:35
So that was kind of, I mean, the world that was an odd time for I believe all of us, but at the time on my stroke, I was working at home, and I just, I don’t, I don’t really think about pre stroke anymore. I don’t have pre stroke is, is a lifetime ago. To me, it’s a lifetime ago.

Bill Gasiamis 3:03
Do you recall what you were focused on back then? What were your goals? What were you hoping to achieve?

Tara Miller 3:12
That’s changed dramatically. I was looking to move up in my career, to be honest with you, and that has that that’s at a standstill, that’s I’m I’m not even back at work. There’s not even like a return to work in place. My company, we have said our goodbyes. Just given the length of time, I have been off, understandably, but at that time, three and a half years ago, I was looking to move up in my career.

Tara Miller 4:01
My youngest daughter was entering her teen years, so you can imagine that was going to be fun and challenging and very demanding of me as a mother, with driving her around, which also came to a dead stop with losing my license for medical reasons, and just everything just came to a stop.

Bill Gasiamis 4:29
How did you view your health? Did you have a sense of whether you were healthy or not, or were you out of shape? Or was there anything that you look back on now and go, or, you know, then I didn’t take care of that or this.

Tara Miller 4:45
No, I would say I wasn’t unhealthy. I wasn’t the healthiest person, like, I’m not a fit guru or anything like that, but I wasn’t unfit. No. Well, I it came out of the blue. It was shocking. I just, I mean, I remember the day like, like it was yesterday.

Bill Gasiamis 5:13
Tell me.

Tara Miller 5:15
Yeah, just it’s even sitting here in this desk, remembering back, because I was actually working down in this room the day it happened. It didn’t happen in this room. It did happen upstairs in my own bedroom, but I had been ill that week, probably related to the stroke, but I had no idea what was going to happen the night I had my stroke, just no idea.

Bill Gasiamis 5:46
Did you when you say you were ill? What kind of illness did you have? What? What the issue?

Tara Miller 5:53
Earlier that week, I was I had some headaches. I have had headaches, foot stroke, and I have a lot of headaches post stroke that I’m still dealing with, as I think a lot of stroke survivors do. I’ve tried everything, but that couldn’t be another, another topic. So earlier in that week, I had had a headache, one of my money, and I was just feeling unwell, kind of like sick to my stomach. So I had been vomiting, aggressively, vomiting like bruised myself vomiting just because it was so aggressive it was so I was home, I actually, I mean, I was home, but I was home sick.

Tara Miller 6:54
So I called in to sick, even though I was working from home, so I had missed a couple days of work, and then I went back on the Wednesday, Thursday and Friday, and worked my full shift on Friday, or my worked a full hours on Friday, and still wasn’t feeling good. I still had like this stomach.

Tara Miller 7:19
I didn’t know if I had a virus or just my stomach was unwell, and I never wanted to be sick again the way I was, because it was aggressively aggressive, and I went to bed early. And then my world changed. Our world changed. My family’s world changed in a blink of an eye.

Bill Gasiamis 7:44
You went to bed early to get some rest, to hopefully feel better, and then what happened? What did you notice that wasn’t the same? How? How did it go down?

Tara Miller 8:00
It’s just, it’s, it’s surreal to me. It’s surreal because I’ve taken first aid, and while I was in, like, having a stroke, I did not realize I was having a stroke, but while I was in it, I did not know what like, I was fully aware something was different, but I did not know what was different. I i went to the washroom, and then I came back and I had this sensation of, like, this overwhelming sensation of dizziness and like, like a vision loss. So I crawled into bed, and I have one of those beds that can go up and down. And I was watching, and it’s kind of ironic.

Tara Miller 8:58
I was watching shits Creek, like, I love it. I love that show. And I was, I felt this overwhelming sensation that I wanted to go to bed like, I just felt like I’m so tired, and then I was lying there, and I don’t know what episode it was, I don’t remember now, and I don’t know what had happened, but, like, my right side was went numb, so I just thought, Oh, my arm’s asleep. Like, that’s so weird, because I felt something under me, and I was like, what is that? And then it was my arm. I’m like, That’s so weird, like, what’s what’s going on?

Tara Miller 9:42
So I lifted it and it would fall like, That is so weird. And I kept like that is, like, why is it so asleep? Like, it should wake up now, because I’m holding it, and I’d pick it up, and it would fall again, and it would just fall, like, fall back. And I’m like. This is so weird. I don’t know what is going on, but I had this overwhelming sensation. I just wanted to close my eyes, so I was looking for my converter that would put my bed down. And then I kind of this is, this is so weird, but I kind of slid off my bed because I was paralysis on one side, but I did not know that.

Tara Miller 10:25
Because in my head, I didn’t know I was, I guess, stroking out ultimately. So now I’m on the ground, and half of my like my right side, is fully paralysis. So now I’m on the ground with one of my cats, not the one that you’re watching now, and I’m looking at him, and I’m like, What is going on? This is so bizarre to me, like, this is weird. So I finally my husband yells up to me, and he’s like, hon, are you okay?

Tara Miller 11:02
And I kind of, I thought I yelled down to him, like, no, like, something’s weird, but what I feel comes out is what’s, you know, Snoopy, and the like, blah, blah, blah, yeah, that’s what I feel was coming out. So I literally crawl back on my bed, and I’m sitting there, and my husband happens to come up because he he doesn’t hear a response from me, and I show him, I say to him.

Bill Gasiamis 11:43
Let’s pause here for a moment. At this point in the story, you’ve heard what it was like for Tara to lose her career, her license and the ability to do something as routine as math, all while looking fine from the outside. If you’re listening to this and thinking, That’s me too, I want you to know you’re not alone. Invisible. Deficits are real. The exhaustion is real, and making it through the day can feel like a full time job.

Bill Gasiamis 12:09
If this part of the story resonated with you, drop a comment on YouTube and let me know what’s been the hardest part of your recovery that others don’t see. Also, a huge thanks to everyone helping this show grow your YouTube super thanks your support of the book, and those of you on Patreon, you’re keeping this conversation going. All right, let’s get back to Tara as she begins to talk about rebuilding life with fatigue, horseback riding and a new kind of resilience.

Tara Miller 12:41
Look at my arm, so I lift up my arm, and he looks at me, and his face drops about 10 shades. And I’m like, Oh my God, what’s wrong? And he’s like, I’m going to call 911, and I’m like, why? But I guess I didn’t realize I wasn’t really speaking like so it’s gibberish, and to me, I’m speaking perfectly fine, but to him, I’m not making any sense. So he calls 911, and then paramedics came and they call over to a hospital that has a stroke unit and well, I guess the rest is history.

Tara Miller 13:29
But the fun thing about the paramedics coming is, when they come to get me, I don’t have a droopy face, so I only have two of the three symptoms, yeah, the fast. And we do fast. We don’t do be fast. We’re starting to do be fast here, but it’s just fast. So as we’re as we’re like, in my driveway, I’m like, I have to be home by Sunday, I have payroll to do, and the paramedics are like, Yeah, I don’t think so.

Tara Miller 14:08
But you you talk to the doctor. I’m like, Well, no, like, I gotta be home. Like, I don’t think so. Yeah, yeah, okay, so then we went to the hospital. I don’t know where I was, like, I don’t know if I was like, in my body or not, because I was, I was, I was all coherent, but I wasn’t really an I don’t think I knew the severity of what was going on, because then, when we got to the hospital and they opened up the doors.

Tara Miller 14:50
There was, like, all these doctors and nurses at the at the like the doors, and I’m like, Are they there for me? And the paramedics are. Yes, it’s like an episode of Grey’s Anatomy for me. And I’m like, Oh my goodness. They’re like, this is very serious. I’m like, Well, it’s, it’s, it’s odd to me, because I feel I’m perfectly fine, wow, like in my head, but I don’t, I don’t realize the severity of it.

Bill Gasiamis 15:22
There’s a disconnect between your brain, which is stroking out the seriousness of the situation your body, and that whole test that you were doing where your arm wasn’t working. That’s just it’s very common. People often tell me how they observe their body during the stroke. They’re not alarmed or concerned or anything, and they just find the fascinatingly bizarre that their arm or their leg is not working. It’s not uncommon at all. So you get to the hospital, they treat you like royalty. They bring you in, and then what? What happens then?

Tara Miller 16:10
So I did ask if I could go to the washroom, and the doctor’s like, No, we’re going to do some tests on you. Can you wait? And I remember saying, I guess so, but, and she said, this is very serious. And I’m like, okay, whatever, so I just went with the flow, keep in mind I had on my pajamas, because it was bedtime, and I asked the paramedics if I could change, and they’re like, no. So I looked at my husband, so I left the house with a T shirt on, shorts and my cell phone.

Tara Miller 16:58
So when I get there, I have my T shirt, shorts, my cell phone, and they put a pair of yellow socks on me because I was bit cold, like after they do all these tests. I did a CT scan, I believe I was still stroking, so the doctor at that hospital, did not administer the TPA. She did not it was, I have learned it could have gone either way, but she took the more conservative approach, I would say, and did not do it, because she didn’t see the stroke at the time on the on the CAT scan. So they admitted me to the stroke ward.

Tara Miller 17:56
I was there for a week. We did the MRI, which that was my first MRI ever, and that is absolutely scary. I’m used to them now, because you get used to them after having a brain injury, but I had the MRI. So the stroke was a Friday night. I had the MRI, I believe, on the Monday, and then it came back. Yeah, indeed, it was a stroke. And when the doctor told me, I just started to cry.

Bill Gasiamis 18:37
Was that the realized something was actually seriously wrong.

Tara Miller 18:44
I was like a stroke, like I’m 46 years old. It seems weird, and I just, I can still remember him telling me, because I was just coming back from walking around with my walker, and I mean, not even that far, because I couldn’t walk that far. And him saying, Yeah, you’ve had like a left side stroke.

Bill Gasiamis 19:15
So were you walking within seven days? Were you back on your feet? Did that initial paralysis settled down.

Tara Miller 19:24
It did. I was walking with a walker.

Bill Gasiamis 19:27
Yeah. So it started to settle down quite, quite quickly while they were treating you. So it was an ischemic stroke. Do they know what was the underlying cause?

Tara Miller 19:39
So the medical term is fibromuscular dysplasia. So artery dissection, which means I have weak arteries, and we would never have found that out unless I had a stroke. So it stemmed from the neck and then went to my brain. Now with, with, it’s common that. So that was a major stroke, probably the week before I did have a mini stroke that was on the right side. And it’s quite common that you have a little stroke before a big stroke, but I might have had just a headache, which I did.

Tara Miller 20:37
I’ve had headaches commonly, so with the type of stroke I had which and I’m thankful that I do know why I had a stroke, because there are lots of people who don’t I did. So I’m in year three, three and a half years now. I did go every six months for scans of my neck and my head and my my stomach, because they want to make sure all the major arteries they’re staying.

Bill Gasiamis 21:14
In good working order.

Tara Miller 21:16
They’re in good working order. So I do have a vascular specialist that I do see regularly on top of the neurologist, yeah, and I’ve had, you know, in my recovery, I was, you know, hopping along, doing okay, cuz recovery is the first year for me, is, I think just I don’t even know what to say about the first year. To be honest with you, I think I was in denial.

Bill Gasiamis 21:51
You couldn’t accept that.

Tara Miller 21:53
No, I joined a lot of peer support groups through March of Dimes. That’s where I’ve met a lot of my stroke survivor friends. That’s how I found out about you, obviously, through my my friends. But I thought I was going back to work in January. I thought I was getting my license back. So many things, and it’s 3.5 years and I’m not back to work because of my cognitive deficit. I just got my license back last week. Congratulations. Thank you. It’s quite a milestone. Mm, but the the brain fatigue is a new level, a new level with driving.

Bill Gasiamis 22:42
So much to concentrate on. And, oh, your brain gets overwhelmed.

Tara Miller 22:47
It does. It does get overwhelmed. But I’m very thankful I have my license back.

Bill Gasiamis 22:52
It’s short trips now.

Tara Miller 22:56
Yeah, I just.

Bill Gasiamis 22:59
And it’ll come back, it’ll improve as you start to build up the muscle again of driving, and it should be less and less fatiguing, but it makes complete sense the sensory overload from driving so many things you gotta pay attention to, all at one time.

Tara Miller 23:18
It is my naps are much longer. My naps are much longer now with driving.

Bill Gasiamis 23:27
When do you find you need to do a nap, like, what time of the day?

Tara Miller 23:30
I nap about anywhere between like one and four. I used to be able to nap for just an hour, but since driving, I would probably do a two to three hour nap, and I will still go to sleep just fine tonight.

Bill Gasiamis 23:53
On the right time as well. Yeah, wow. That just goes to show how much you need that nap to just get you past that fatigue that driving has caused. I love that, though, because it’s the perfect way to continue the rehab. We’ll call it rehab, right? It’s driving, but we’ll call it rehab because you’re driving, you’re doing something really hard for your brain, you’re putting it in a difficult situation, you’re fatiguing it, you’re tiring it out.

Bill Gasiamis 24:20
And then you give it what it needs to rehabilitate, to rest, to recuperate, and then you’re back at it again, and you feel recharged, and it helps you get through the rest of the day.

Tara Miller 24:32
Absolutely, absolutely I if I don’t nap or rest, there my husband can tell, I can tell, it’s, it’s not good. It’s, I do. I’ve had many strokes since my my stroke, and I think one of them was because I was. Overdoing it, but one of them actually just came out of nowhere, and it was as a stroke survivor. I was on the road to recovery. I was in year two. I thought everything was going fine and dandy.

Tara Miller 25:17
I was kind of feeling really good understanding this new path, understanding you’ve met Doug, understanding 2.0 trying to get to know her, and then, boom, I was hit with a mini stroke, and I thought, wow.

Bill Gasiamis 25:35
Just hard to accept.

Tara Miller 25:40
It was at first because I was just like, Why? Why? I don’t understand. I’m doing everything that I’m told to do. I’m following everything like I I’m just, I just don’t understand, why? Why? Me like I’ve already, I’ve already been through this. Why is this happening again, and why a mini stroke? So luckily for the support groups and the peers, it’s normal. And I was like, Okay, I guess it’s normal to have these little tias when you least expect them.

Bill Gasiamis 26:25
So, it’s just common. It’s common. It does happen normally. I don’t know about normal, but common. Yeah, and it’s a lot of people describe. There’s often a number of events afterwards. Sometimes there people have events that are kind of false alarms, but then also sometimes there are actual events. I was in a similar situation. My first two happened within six weeks of each other, the bleeds that happened in my head.

Bill Gasiamis 26:54
And then the next one happened, you know, a year and a half later, and it was the biggest setback, because that one there required brain surgery and then learning how to walk again and everything so that you do, you go through those ups, downs, then you go through, like, big ups, and then you go through downs. That’s kind of my journey was very jagged. It was not a straight line, that’s for sure.

Tara Miller 27:21
Yes, that’s you’ve explained that well. But I think because I was so up, it just it. It did bring me so down. And I think with the TIA, I felt my my speech did step back a lot. My aphasia comes out when I’m tired, or my speech is delayed when I get tired, and still to this day, but a lot of people don’t notice it because, well, they they do notice because I will start talking like slower or more delayed. But I found after the first Tia, or maybe the second one my speech did step back.

Tara Miller 28:25
So it was like I went to two feet forward, or two steps forward, and then 10 steps back. So like you said, that was a big adjustment for me, but now, because it’s been that was in 2003 that I had, Tia is and now it’s 2025, I’ve learned to just go with the flow. And I, I was a high, tense person pre stroke. I’m a calm person. Now, I wouldn’t say I’m like a hippie calm person, but I’m calmer, like there’s an improvement, there’s a huge improvement. So I can’t, I can’t let the little things bother me.

Bill Gasiamis 29:23
So you know this Tia that you experienced. Did you know that was happening, at least? Was there a warning sign? Did you do something about it?

Tara Miller 29:32
The first TIA, I did call 911 and I know I’m supposed to call all the time, so I’ll leave it at I do call 911, now, yes, I do. I’m supposed to check my blood pressure frequently because I have low blood pressure. So if I’m having a stroke, it will go very high, mm. Mm, so that day that I had, when I have my tias, they mirror the exact symptoms I had when I had a stroke. I have right side paralysis, I get dizzy, my vision gets blurred, and I have high blood pressure, and in both, in, in all the instances, like I can’t stand, like, because my whole right side is paralysis.

Bill Gasiamis 30:33
Okay, so, so what did they do to support the blood vessel that had dissected. Did they put a stent in there? What did they do with it?

Tara Miller 30:47
They just watch it okay, and you’re on. There’s been, there’s been no change in three years. So the big stroke was from my neck, and they won’t do anything like they’re just watching it, but there hasn’t been any change. The mini stroke was an artery between my brain and my skull. I can’t do anything.

Bill Gasiamis 31:23
Okay, so it was a new location.

Tara Miller 31:26
A new location. So they will, so I do go for scans yearly to make sure that one’s not doing anything. And then they also check my stomach. But, yeah, new location.

Bill Gasiamis 31:42
I see, okay, so you’re on a kind of like a regular scan, a regular, hospital visit, so that you guys can just keep everything monitored.

Tara Miller 31:57
Yes.

Bill Gasiamis 31:58
Okay.

Tara Miller 31:59
I’m very I feel very fortunate. I have a vascular specialist, and I have two neurologists, one that I see regular and then one that I asked to keep because he was the one that I saw at the hospital that I stayed in. The other neurologist. I was the one neurologist suggested me to. So he’s a top neurologist in in Ontario, like in Canada, so he’s a little farther away, but, like, I go to him every six months.

Bill Gasiamis 32:42
Yeah, so you know that idea of needing help and connecting with the stroke support groups, what was behind that? What were the issues that you needed to, I don’t know, get your head around and therefore you needed to connect with other stroke survivors.

Tara Miller 33:07
Actually, I didn’t even know there was programs available. I was at rehab after my stroke, and I found a poster that said Young stroke survivors. So I called or emailed.

Bill Gasiamis 33:25
Did you think you were young at 46 Yes, yes, some people think they’re old. Good. You at least thought you were young, cool.

Tara Miller 33:34
Well, young stroke survivor. I thought I’m a young stroke survivor, yeah, when I think of his when I and hopefully noone takes offense to this, because now that I’ve been open to the stroke worlds, I mean, stroke, strokes do not discriminate, they hit any age. But when free stroke, when I think of strokes, I thought of the movie. Oh, what movie is it? You know, with Brad Pitt when he’s in, his name’s Tristan, and his dad has a stroke.

Bill Gasiamis 34:15
Maybe someone can tell us in the comments. I don’t know, but you think of old people I know do 20 year olds Think of us as old people?

Tara Miller 34:24
Definitely. Well, I would think so. I think my daughter thinks I’m old and she’s 26.

Bill Gasiamis 34:32
Yeah. So when you get to 46 or 50 like I am, we’re still young, and we feel young and we are young, because the average age of an adult human being somewhere around 80 or something, or more, or the expected living age, I beg your pardon. So, yeah, I agree with you. I think we’re young.

Tara Miller 34:57
We’re I think we’re young to have strokes.

Bill Gasiamis 35:00
That’s it even more specific there, yep, okay.

Tara Miller 35:05
And I think, I think this poster said working age, young stroke survivors, working age. So I think that’s what caught my attention. Because I think a lot of people, and again, now that I’ve I’m a stroke survivor. It helped me. I wanted to to reach out to other survivors in and around my age to understand. Well, how are you coping? Mm, How are you coping with no license? How are you coping not going back to work? How are you coping with a teenage daughter or a young a young daughter, a young adult daughter, and now and now you’ve had a stroke?

Tara Miller 35:53
Because there’s some, there’s some peers that are retired. So some of the stroke stories are, well, I was retired when I had a stroke and I and I want to hear your story, but I don’t relate with you completely. I’m you’re at a different you’re at a different stage. I’m not retired yet, and I shouldn’t be retired yet. I’m like, I’m only 50 now. I had a stroke at 46 I still had 20 years of work, 20, and I’m not good with math, so let me do the math on that. And like math. Oh, I didn’t. I actually didn’t realize, and I laugh at it, how stroke could affect because I had a left side stroke.

Tara Miller 36:46
Math is gone. All gone. So when we talk numbers, I mean, I can add two plus two, but if you, if you, if you showed me like a spreadsheet, even a spreadsheet I did because, I mean, I did payroll, I would be amazed. I would be amazed by it.

Bill Gasiamis 37:11
So I know what you mean. I mean, I have a problem with maths, and it’s not the standard numerals and all that kind of stuff. You know, adding things, simple things. In my business, I can put quotes together, and I can develop a price for somebody. But if you give me something like a spreadsheet, I think it’s the again, I think it’s the sensory overload, like it actually triggers me. And I don’t normally get triggered by almost anything. I remember being in a meeting when I was when I wasn’t working in my business.

Bill Gasiamis 37:46
I had three years where I was working in an office, and the guy that I was working for was actually a friend of mine, and he was in charge of this particular department in this organization. And this guy is a numbers genius, like he’s a number savant. He can look at a spreadsheet and make it sing, and we’re sitting in a meeting, and he’s explaining to the team about this spreadsheet and how we’re going to use it, and all this kind of stuff. And I’m looking at it and it doesn’t I cannot gleam from that spreadsheet that it is going to.

Bill Gasiamis 38:20
I am going to be able to do what he said with that spreadsheet, just the amount of data, the numbers, was overwhelming, the lines, the brightness, the font, you know, like every single aspect of it, it was just completely overwhelming. I’d never felt overwhelmed to that extent before. I resigned on the spot that day. I said to him, this is the last day of work for you, because I cannot do the kind of work that you ask, because I cannot comprehend a spreadsheet with that much detail.

Bill Gasiamis 38:50
I physically cannot comprehend it my brain, and I know brains don’t have sensory neurons, but my brain hurts when you show me that spreadsheet, and you tell me to get information from it. It’s not possible.

Tara Miller 39:07
I know my mind is blown when I look at spreadsheets these days. And I used to build them, I used to do them, and I’m like, blown, and I can do simple math, but other math, I’m just like, oh, payroll, it’s and that’s why, obviously, I I’m not working at job I was doing before, because, like, I can’t.

Bill Gasiamis 39:33
If you give yourself some time to work out, say, a calculation of how much change you might get, you know, one of those basic calculations, how much change you might get from buying a loaf of bread, a carton of milk and all that type of thing. Are you able to do that?

Tara Miller 39:52
No, even you just saying that to me, like, I’m starting to get like, anxious.

Bill Gasiamis 40:00
Isn’t it interesting? Anxious? You said that. That’s what I felt, and that made me walk out of my job on that day.

Tara Miller 40:08
That made me anxious.

Bill Gasiamis 40:09
Wow, yeah. So, thank God for well, the supermarket machines that just work it all out for you, and you don’t have to think about it or worry about it.

Tara Miller 40:22
Well, exactly because I wouldn’t be able to make change there’s now when, when you were in the hospital, did you have to draw a clock?

Bill Gasiamis 40:35
I did once I did in my neuropsychological assessment, I definitely did, yes once, and I passed that one, I had no trouble during the clock. And I know where you’re going, so I’m going to ask you in a sec. But I think what they’re testing is to work out whether or not you have all of the left side and all of the right side of your brain’s functions. What was your test like? Sorry, to laugh. Because about an hour.

Tara Miller 41:06
Definitely laugh because, like, the clock with the hands, like my, my kids would probably never be able to do it, because there’s not a lot of clock with hands anymore, but so in the hospital, I failed terribly. Well, that test came up again because I had to do the driver’s rehab assessment. I had to go through a rehab Assessment Center before I went to get my license. And it came up again. And I thought, What is this really coming up again? And I did get the big hands right, but I did not get the little hands right.

Tara Miller 41:45
And I thought to myself, this test is going to follow me around, and it’s and I cried in the hospital. I can remember well in the hospital. I mean, I didn’t do well on a lot of things, but that was like a few days after my stroke, but last two weeks ago, they were like, okay, draw a clock. And I looked at her and I said, What? Draw a clock with hands like this. That is my nightmare. So that’s why I have to pose a question, did you have to draw a clock? Because now I need to know, and I can’t remember if I drew a clock for my neural assessment, so I’m going to start practicing.

Bill Gasiamis 42:32
Yeah, maybe because if it keeps coming up.

Tara Miller 42:38
I did pass it, because I did get the main idea of where it all goes.

Bill Gasiamis 42:45
The numbers right. So you put the numbers. I didn’t get the numbers right and in order.

Tara Miller 42:49
I did get it right. I didn’t get the little number right.

Bill Gasiamis 42:54
So when they told you make eight o’clock, for example, you found the 12, but you couldn’t make the eight.

Tara Miller 43:01
Yeah, it was, No, I got the big numbers. So I got 3pm but I didn’t get like, 315 because then what happened? What happened is my payroll brain clicked on, and then I was like, I clicked into, like, look at it as a quarter. So I didn’t look at it as a clock. I looked at it as at a quarter. So yeah, it’s and she said, yeah, you passed anyways, like, I did get a point off for not getting the little hand.

Bill Gasiamis 43:32
But was not enough to restrict you from your license.

Tara Miller 43:39
That was just one part of the test that was just one question of the test. It’s a very in depth it’s a very in depth test, and it, I’m glad they do it, just because, I mean, I did have my license suspended for medical reasons. And, I mean, we did lots of brain brain tests, but I just can’t believe that one came up. Yeah, it was just like, oh, the hospital again.

Bill Gasiamis 44:12
But sounds like you’ve had a bit of a turn from, you know, all the difficult times, the tough times and all that. Sounds like you’ve kind of shifted your mindset. Was there somebody that you met that encouraged you or that made a difference for you? How you know? When does that turn happen? How do you describe that?

Tara Miller 44:35
I think it’s a combination of all the people I’ve met and all the different groups. They’ve all their stories, all their milestones, the sadness and the happiness, just sharing our stories, sharing our updates, our happy stories, our sad stories. I think that helps me get through. I was explaining to my husband just the other day, actually, that there’s not a day that goes by that I don’t think about the stroke, and I don’t think he realizes that, like, there’s not a day that goes by.

Tara Miller 45:19
And he is an amazing caregiver. He’s been my number one supporter, my daughters, my family, everyone, my friends. I’ve been very fortunate, because I’ve actually heard like such sad stories, and I’ve been very fortunate and I’ve met amazing peers that have also had their ups and downs, but they’ve supported me and I’ve supported them, um, but I’m not saying it’s been an easy road. I I like my deficits are invisible. And it’s like that famous comment, oh, my God, you look so good. It’s almost in our groups, it’s we, kind of, we laugh at it now, because, thank you. I know.

Bill Gasiamis 46:12
It’s a cheap consolation prize. It’s not really anything. It’s not meaningful to hear that. I know it’s not intended in any way to be negative. I totally get it.

Tara Miller 46:26
No, it’s not. It’s actually supposed to be very thoughtful and an amazing compliment.

Bill Gasiamis 46:33
Yep, and uplift.

Tara Miller 46:34
But it’s in our groups, and that’s why we on in our groups. We’re always like, Oh, it’s the other Oh, you look so amazing. Yeah, my brain doesn’t though my brain is is like, so for me, I honestly, I can’t get sad about it. It is what it is and but I mean that in a positive way. I’m not looking at the stroke as being a positive thing, but I have to take the recovery positive. My life has changed, like I’m not the person I was. I can’t be that person is, is is kind of gone. I’m not fully, you know, as Doug says two point like, I’m not tear 2.0 yet, I’m still learning her.

Tara Miller 47:28
But I’m doing things now that I probably wouldn’t have done if I didn’t have a stroke, like, what? Well, I started horseback riding again, and I’m not, yeah, I know I do have medical clearance to do so I wouldn’t just jump on a horse. I mean, I haven’t ridden a horse since I was 19, and that 49 I’m like, let’s do this. Let’s do this, and I love it.

Bill Gasiamis 47:59
I bet.

Tara Miller 48:00
I’m not going to do anything silly, like, I’m not going to I’m not going back to the riding I did as a young like a child, early, early adult. But even just getting on the horse and walking and trotting. I mean, it’s, I love it, like my husband says, I’ve never seen you smile so much, and I don’t know if I would have taken that up again. If you’d asked me five years ago if I would pick up horseback riding, I would probably be like, No, I’m too old for that.

Tara Miller 48:33
And now I’m like, Yeah, I go horseback riding once a week. And I’m not like, I just, I love it. I I, and I’ve always wanted to learn how to knit. So I go to a knitting club or, yeah, I feel I want to knit.

Bill Gasiamis 48:57
Well, it’s so cool, it’s so useful and practical.

Tara Miller 49:01
Yeah, I want to knit blankets. I don’t know. I mean, I have enough blankets in the house, but I want to knit. And I think five years ago, I wouldn’t have taken the time to learn how to knit. I’ve asked my mom to show me, but it’s that’s a little different. Having someone you know, teach you, I think is very difficult, but I’ve learning to knit. I volunteer at the on the stroke ward at the hospital where I had a stroke. And I’m not saying I don’t know if I would have ever volunteered, but I enjoy it. I still haven’t found the word I want to use, but the way I explain it, it humbles me.

Bill Gasiamis 49:52
Yeah, it’s rewarding as well. Is it?

Tara Miller 49:55
Well, that’s it. It is really rewarding for me. It’s it. It’s like, I, I’m, I’m, it is, and that’s, I’m trying to find another word, because I don’t like how many strokes that are happening, yeah, like, it’s, it’s, it’s so sad. But I I say that we’ve all been invited to this. It’s an invite only club, even though we didn’t want the invite. Yeah, we’re here anyway, so we have to make the best of it.

Bill Gasiamis 50:34
Yeah, volunteering is really cool. I did that early on as well, quite a bit, yeah, probably the first three or four years and and then after the brain surgery, was a little bit harder to commit to volunteering. Just recovery took a bit longer than than I needed or wanted. And then not long after that, it was hard to get away from work, because I got back to work and then COVID. But volunteering was always supportive of me as well as that other person. That’s what I found. And my volunteering was for the Stroke Foundation.

Bill Gasiamis 51:09
And we were raising awareness, and we were meeting other stroke survivors, creating a community people I still catch up with and see. You know, 10 years later, because of that, and it’s really, it’s really rewarding. And like you, I don’t think I would have done any volunteering before stroke. I just wasn’t in that frame of mind. It wasn’t something that I thought was necessary for me to do. I understood the value of it, but I just didn’t think it was something for me.

Bill Gasiamis 51:40
So I like that you’ve taken up these, what old passions that you let go of because you got busy with work, being a mom and all that type of stuff, and now you’re thinking, Well, what have I got to lose or go horseback riding? Is it easy to access to get to a horse riding club from your place.

Tara Miller 52:03
Oh yes, I live in the country. Oh yeah, yeah, I live in the country.

Bill Gasiamis 52:07
And you get to ride the same horse every week, or is it a different horse?

Tara Miller 52:13
It’s funny. I met my instructor actually had a brain injury, so we’re perfect for each other, as far as I’m concerned. And her horse, Sierra was like, literally, my my soulmate horse, and she was the perfect horse for me to ride. She’s just she, she’s just an angel. And it was like meant to be for for me to be her, her rider, and she had other other students, but it was the perfect horse for me to learn how to ride on again. And we were doing well.

Tara Miller 53:00
And we were, we were actually getting ready to practice for a possible horse show, just walk, trot, horse show this May and in January, unrelated to stroke, I had just real weird stuff happens to me. I had a cleft lung Just out of nowhere. Yeah, clefts a partial collapse lung, and then pneumonia. So, yeah, it’s very bizarre, very bizarre. Out of nowhere, and I had to take, obviously, several weeks off. And so my horse, Kiera, then we found out that so she has some leg problems, and I don’t really, I don’t know the medical term, but she has retired.

Tara Miller 54:00
She had to go into early retirement because of her legs are not getting better, and it’s just like I was broken and then she was broken. So that’s my story about Sierra, who literally was my sole horse. And I’ve ridden a million horses. I’ve loved a million horses. I’ve had horses, but Sierra and I, we were meant to be together for that short little stint. Yeah, from and she’s going to be as her her mom says, pasture potato now, yep, and she deserves to be beautiful horse.

Tara Miller 54:40
So now I’m going to be riding Scarlet, because I don’t, I’m, I’m of the age in the and I’m delicate where I can’t just get on any horse, yeah. Um, so that was a great question, but Sierra and I, we jived like she knew it was me on her. Yeah, and it’s very heartbreaking, but we, I mean, I’m, I’m heartbroken, so you can imagine what her mom is going through after having her for 13 years. But I’m now riding in scarlet. Is an Arabian horse. Beautiful, beautiful face. So I’ve only ridden her once because I had to take some time off. Do you do my collapse?

Bill Gasiamis 55:28
Yeah, tell me about that. What’s also, what about, how does that even happen? And how do you collapse lung?

Tara Miller 55:34
Well, I was horseback riding, and that’s not I already had it. The collapsed lung had already been there, and I was just out of breath. And I said to my instructor, I feel like I am out of breath a lot more. And she said, yeah, you seem barely out of breath this time. And then I just went to an urgent care and I thought I had pneumonia, and they said, No, your your your chest is clear, but go get an x ray like something’s going on.

Tara Miller 56:09
And then they called me, and they said, Yeah, you have a partial collapsed lung. Go to the hospital. So I went to the hospital and waited and waited and waited and waited, and the doctor said, yeah, you have a partial collapsed lung. We need to do chest tube.

Bill Gasiamis 56:33
To reinflate it.

Tara Miller 56:35
Yeah.

Bill Gasiamis 56:36
Wow.

Tara Miller 56:37
It was horrible.

Bill Gasiamis 56:38
Did you have like, a rock bottom moment. Did you get to the stage where you’re thinking, oh my god, what is going on? This is really. Was there a moment like that? No, no, that’s all right. That’s good.

Tara Miller 56:50
I was just like, really, really, like, I’ve gone through one major throat, stroke, three tias, one hospital stay like, or like, two hospital stays. Now collapsed lung, it’s partial collapse lung. And then a week after that, then I had pneumonia, which I got from the collapsed lung, or partial collapsed lung, but they said they don’t know why or how I got it mostly come like that type of collapse, long comes from very tall, lanky men that are runners and I’m like, I’m Five two, I’m not lanky, I’m not a man, so help me out here, like we got nothing.

Bill Gasiamis 57:48
That’s an interesting explanation to give to somebody that’s the exact opposite of all those things.

Tara Miller 57:53
But the exact opposite. So I was like, Okay, I’m gonna go on my way then. So luckily, I didn’t have to my my lung did reinforce, and I did not have to leave the hospital with the test tube, chest tube, test tube. So I’m happy for that. I do not encourage anyone to get a chest tube. I did not know what it was going to feel like. It’s not something I recommend. It’s horrible. But I just, I went with the flow.

Bill Gasiamis 58:32
What do they do? Put a hole through the front of your chest, into your lung.

Tara Miller 58:36
In this side.

Bill Gasiamis 58:38
My gosh. I actually have never seen through the ribs type of thing.

Tara Miller 58:42
Correct. I’ve never seen a chest tube be inserted, prior to this, this little incident, and since then, I’ve seen it done maybe five times on on medical shows. And I’m like, oh, and it’s, it’s not it’s it does hurt. There’s nothing they can really give to you that really stops all the pain.

Bill Gasiamis 59:09
It’s always feel it right. Okay, so you’ve had quite the journey. How have you changed, not just physically, but also emotionally and mentally. How do you see yourself these days?

Tara Miller 59:28
I think I’m happier.

Bill Gasiamis 59:32
I do. That’s not what I was expecting you to say. That’s cool.

Tara Miller 59:38
I but I have my moments.

Bill Gasiamis 59:41
Everyone does, right, but you’re happier, generally, happier and calmer. I am. That’s a great I am happy to arrive to what are you happy about?

Tara Miller 59:53
I just I don’t take life for granted. I don’t take anything for granted anymore. Mm, I, you know the sayings top smell the flowers like I literally do. I stop and look at birds on my walk. Mm, I never thought I’d stop and look at birds, but I do, because they’re pretty, and that’s something in my previous life. I don’t think I ever would because I didn’t have the time, because I was Go, go, go. And the stroke, just it.

Tara Miller 1:00:29
It stopped everything. It put me in my like, it just it, well, it scared me, scared everyone. It’s scary. It’s but it, I didn’t die. I could have died, but I didn’t. I was given, I look, I was given another chance.

Bill Gasiamis 1:00:51
Sounds like it’s changed you in a very meaningful way, this experience that you’ve had with your health the last few years.

Tara Miller 1:00:59
I think it has. I wish little things would stop happening. Like, I don’t need a partial collapse long again. No one needs that. Yeah, we’ll just like, I don’t need those. Like, I do have to work. I do have to work at when I go out. I mean, I do rest up for functions. There are behind the scenes stuff, as you probably know, to get ready for big functions or just to go out. I do prepare. I do prepare when it’s time to go horseback riding, like I will sleep the day before, little longer, or I’ll rest the day before I don’t, I try not to do back to back stuff because I can’t.

Bill Gasiamis 1:01:45
Yeah, can relate to that.

Tara Miller 1:01:48
So there’s a lot of behind the scenes to make something happen.

Bill Gasiamis 1:01:55
And then usually the next day after horseback riding, is that a rest day as well?

Tara Miller 1:02:00
Yes. Actually, even after horseback riding out like my naps are closer to four hours.

Bill Gasiamis 1:02:07
Yeah.

Tara Miller 1:02:08
It’s, but it’s exhilarating while it’s happening, and then it’s nap time.

Bill Gasiamis 1:02:17
Have you noticed that improving that nap times are changing that they’re are they sometimes not even needed naps, or are they always needed?

Tara Miller 1:02:27
Still, they were improving, definitely improving, where I could probably just go have a quiet, you know, lie in the bed and just have quiet time until I got my license, and now I’m back to I need them.

Bill Gasiamis 1:02:45
Okay, so you’re starting to put your brain in a little bit of discomfort by going for a drive, and it’s going, alright, I need a rest. Now, you know, there this whole discussion around naps reminds me of the kids when they were little, you know, and then suddenly they don’t need to nap anymore. And what do you mean? You don’t need to nap. You do need to nap. You’re going to be grumpy at the end of the day and them insisting that I need to nap, and then me insisting, and my wife insisting that you have to nap because now you’re ruining our plans for the day.

Bill Gasiamis 1:03:18
Or we we were used to your napping routine, we would get some quiet time. You know, it reminds me of those conversations when I was talking about friends with friends and family, about kids nap time and how it’s changed, and how they eventually stopped needing it. But this kind of reminds me of a similar thing, where you have a lot of need now, but as the years and time progresses and the healing continues, that it should get less and less, but it doesn’t seem like you mind napping. You seem to quite enjoy the opportunity to go and have a rest and a nap.

Tara Miller 1:03:55
I do, especially if I’ve had a big day out or something and naps were getting better and not needed, as much like you said, until I started driving and I noticed a huge I do need to at least go lie down or a quiet time, listen to relaxing music, spa music, just to quiet my head.

Bill Gasiamis 1:04:21
I know now for me, sometimes it’s probably a nap is probably not necessary, but that just lying down and listening to chill music or something like that dark room is enough to recharge the brain battery. And I really do look forward to it as well. And I love having nothing to do after something eventful, whatever it is, whether it’s going to the football or going to a concert or going out on the town, just enough to have nothing to do afterwards, just to chill out and it’s kind of like my time to decompress and appreciate.

Bill Gasiamis 1:05:00
At what I’ve just seen and done and reflect on it, instead of getting onto the next busy thing and going and going and going, is there something that you so the stroke survivors watching and listening, they’re probably not at this stage of your journey, or they might be Before this stage. What would you like to say to them about the journey and about stroke recovery?

Tara Miller 1:05:30
The journey is, well, I’ve I’ve said this to the survivors in the hospital, that it’s a slow process, and I like to say, and sloth is one of my favorite animals, along with horses, cats and dogs and dolphins, like just sitting with you, but and all of them, and all the animals, oh yeah, birds, birds are my favorite too. But it’s, it’s, it’s a sloth, sloth space, it really is and you can’t make it go faster, and you have to go with the flow. And every and every journey is different. Every stroke is different, every journey is different, and to have patience. I never had patience.

Tara Miller 1:06:24
I think I have more patience now than I’ve ever had before. My older daughter has said, You’re not the mom, you’re not the mom you were to Abby than you that you were to me like you’re different mom, and I’m like, I’m a different person, though, and it’s of no fault to my own. Like, I’m sorry that I’m different. It’s different times. And she’s like, Abby gets away with everything. And I’m like, Well, I have to pick my battles. I don’t right. Like, I was more uptight then I can’t. I don’t care that Abby’s room is dirty like I don’t I did when Alex was young.

Tara Miller 1:07:08
So that’s just an example. I picked my bottles now, when you’re raising kids, because I can’t let the little things bother me like I did the stroke recovery is, is kind of my first priority. I know it’s hard to say, Yeah, but I do. I do put myself first. Yep, the recovery is first, and it’s slow, but it can be, it is rewarding. The milestones are rewarding. And there’s good days, bad days, happy days, sad days. But you just, it’s an invite only club. Even though you didn’t want the invite, you just, you have to accept it and go with the flow.

Bill Gasiamis 1:08:02
So it sounds like your child is noticing the different in your behavior and then is comparing, as all kids do, comparing themselves to how you treated one sibling as opposed to the other one, and is going, you should be stricter on the other sibling of mine correct to even out the playing field so I can feel like I got a little bit of revenge back, or some equality in treatment or something. I totally get that from a kid’s perspective.

Tara Miller 1:08:35
Well, they’re 10 years apart.

Bill Gasiamis 1:08:39
It’s completely different times, yeah, but they don’t understand that.

Tara Miller 1:08:43
No, and I mean, I’m, I’m a little easier on I just, I feel when I had my stroke, was it a very imperative time for my younger one. She just turned like she was starting grade eight, crucial time for a young girl like needed her mom to drive her here, there and everywhere, and then, boom, her mom’s in. I felt like I was in bed for one year. I literally felt like all I did was lie in bed and order Uber Eats.

Bill Gasiamis 1:09:21
Yeah, yeah. I remember missing out on stuff that we should have done, quote, unquote, should have done with my youngest as well, camping, fishing, that kind of stuff that we just couldn’t make it happen. And now that they haven’t happened, he’s 24 trying to get him into the zone, to come to an event with me so I can relive something I should have done with him 10 years ago, like it just doesn’t happen. But I totally get where you’re coming from, number one has to be you, because if you’re not well, then you can’t be.

Bill Gasiamis 1:09:59
But you can’t participate in your child’s life in any way, and maybe not at all. You might not be around. So what’s the point of that? You have to make a sacrifice. But when they’re little, they don’t understand the sacrifices that adults make. I remember my oldest son, who’s 28 now it would have been about three or four years ago, come to me and say he kind of had a deep realization as to what I went through and how bad it really was.

Bill Gasiamis 1:10:30
And it took him eight or nine years to get to that stage, to actually, you know, where he grew up, he became mature, and he had a different view on life. And he really kind of came to me one day and he goes, I think I just really understood now what happened and what you went through. So it’s kind of good that they don’t know that they’re a little bit ignorant the kids sometimes, and that they think you’re just being a mean mum, or you don’t treat me the same as the other one.

Bill Gasiamis 1:11:02
The usual kids stuff. That’s like, if it’s that, if we’re still at that stage in life where they still assume that they’re just being unfairly treated because they’re the most important what they want is the most important thing in the world. I think that’s a good space to be, but Oh, absolutely, it comes with a bit of a cost. That’s what I felt. And it sounds like you’ve experienced similar conversations where.

Tara Miller 1:11:29
Abby was home when I had the stroke, so she was a part of it. She was here. She was saw me. Her face looked just as scared as my husband’s, and I was kind of like, what is going on? Alex at school. Yes, so two different and Abby lives here. Abby deals with me, um, daily. She deals with mom recovering from a stroke. Alex does it so it’s Abby’s gonna get to have a messy room if she wants.

Bill Gasiamis 1:12:15
And so Alex is dealing with the but you look fine version. Yep, didn’t see the ill part, the serious part at that time I hear, yeah, it makes complete sense. Hey, Tara, thank you so much for reaching out. I really appreciate you coming on the show and sharing the story, and I wish you well in your recovery ongoing. And thank you. Have a lovely time with your animals.

Tara Miller 1:12:42
Thank you. Thanks for having me, Bill. It was very fun.

Bill Gasiamis 1:12:46
Well, that’s it for another episode of the Recovery After Stroke Podcast. Some stories don’t end with a miracle moment. They unfold slowly, like Tara’s, through setbacks, surprises and small wins that all add up. I’d love to hear your thoughts on this episode in the comments. What part of Tara’s story resonated most with you? Let’s keep this space where stroke survivors feel seen, and if you want to go deeper, and if you want to go deeper, check out my book. The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 1:13:19
If you’ve ever struggled with meaning after stroke, this book was written for you. You’ll find stories, tools and circuit breakers to help you shift. Check it out at recoveryafterstroke.com/book, to support the show. Hit the super thanks button on YouTube or join the Patreon community. And if something in this episode moved you don’t keep it to yourself, share it with someone who might need it, and remember, slow progress is still progress. See you in the next episode.

Intro 1:13:49
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 1:14:19
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The post From Collapse to Comeback: Tara’s Story of Stroke, FMD, and Finding Herself Again appeared first on Recovery After Stroke.

Recovery after stroke isn’t a straight line, it’s a winding, unpredictable journey that challenges not only the body but the mind and emotions. It’s easy to think recovery ends when rehab does. But for most survivors, that’s just the beginning.

There’s the grief of lost abilities. The confusion of waking up in a body that feels foreign. And perhaps most misunderstood of all, the kind of fatigue you can’t sleep off.

Post-stroke fatigue is not the same as being tired. It’s deep, cellular. A kind of heaviness that sleep doesn’t fix. You can wake up exhausted. You can rest all day and still feel drained by evening. It doesn’t come and go; it lingers.

This kind of fatigue makes small tasks feel enormous. Putting on shoes. Taking a shower. Holding a conversation. Everything demands energy that your body no longer gives easily.

And the hardest part? It’s invisible. To the outside world, you might look fine. But inside, your brain is still working overtime just to keep up.

For many stroke survivors, recovery starts with relearning: how to walk, how to speak, how to navigate a world that suddenly became unfamiliar. Whether the stroke affected the left side, the right side, or speech centers, it leaves an imprint.

Some people regain skills quickly. Others move slowly, step by step, using devices or therapy to support their progress. What matters isn’t speed, it’s consistency, compassion, and staying in the game.

One of the most disorienting parts of stroke recovery is not looking sick anymore.

People stop asking how you are. They assume you’re back to normal. But maybe your hand still doesn’t work like it used to. Maybe stairs are still terrifying. Maybe your brain feels foggy by lunchtime, and you need to nap every afternoon.

These hidden deficits are real. They affect your work, your relationships, and your self-esteem. And they’re often the part of recovery no one talks about.

Many survivors face mobility issues long after hospital discharge. One common issue is foot drop, where the front part of the foot drags or doesn’t lift properly. It can make walking feel awkward, slow, and even dangerous.

There are technologies that help, orthotic devices, functional electrical stimulation, and targeted rehab. For example, devices like Bioness can provide electrical signals to assist foot movement and improve gait. Some clinics even offer free trial sessions to see if they’re a fit.

The right tool won’t solve everything, but it can be a stepping stone toward greater independence.

Physical therapy is only one piece of recovery. Emotional support is just as essential.

Recovery can be isolating. Friends may drift. Work might not feel possible. Your sense of identity can blur.

That’s why connecting with others who understand stroke, not in theory, but from lived experience, can be life-changing. Whether it’s an online group, a local meet-up, or a comment section under a podcast, having a place to feel seen and understood is part of the healing process.

Stroke recovery is slow. It’s messy. It’s frustrating. But above all, it’s possible.

If you’re still using a cane, still wearing an AFO, still struggling with speech, still waking up tired, you are not behind. You are rebuilding.

The fatigue, the grief, the tiny victories, they all count. And no matter how long it’s been, recovery is still happening.

Alyssa reveals the raw truth of stroke recovery: the fatigue, the grief, and how she’s rebuilding life after a stroke at 31.

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Highlights:

00:00 Alyssa’s Life Before the Stroke
05:17 The Onset of the Stroke
12:43 The Stroke and Its Immediate Impact
19:50 The Road to Recovery
28:44 The Heart Surgery and Its Aftermath
39:37 Life After the Hospital
45:28 Fighting Through the Pity Party After Stroke
59:46 Reflections on the Experience
1:08:49 Alyssa’s Coping Strategies and Daily Challenges
1:15:26 Fully Healed, But with Scars: Alyssa’s Message to Stroke Survivors
1:26:80 Introversion and Adapting to Social Environments
1:32:42 Support and Community Building
1:39:06 The Role of Podcasts and Personal Stories
1:42:54 Final Thoughts and Gratitude

Transcript:

Bill Gasiamis 0:00
Before we dive in today, I want to thank Bioness for supporting this episode. Today’s conversation features one of their patients, but more importantly, it’s a story about resilience and recovery. This is not a paid testimonial, just an honest look at one person’s journey and the role technology played along the way.

Bill Gasiamis 0:19
Alyssa Van Steen was 31 when a rare bacterial infection attacked her heart valve, leading to a hemorrhagic stroke and eventually open heart surgery. What followed was months in hospital, re learning how to walk, speak, and function with her dominant side offline. This conversation isn’t about easy answers. It’s about the days that don’t get better overnight.

Bill Gasiamis 0:45
It’s about the kind of fatigue you can’t sleep off. And it’s about what it means to rebuild your life when the world thinks you’re better, but your body still knows the truth if you’re in it right now, if recovery feels heavy, endless or invisible. Alyssa story might be the reminder you didn’t know you needed. Let’s get into it. Alyssa Van Steen, welcome to the podcast.

Alyssa Van Steen 1:11
Thank you.

Bill Gasiamis 1:14
Thank you for being here. Tell me a little bit about what life was like for you before stroke.

Alyssa Van Steen 1:25
Life with before stroke, so I was 31 when it happened, and I was just working, and I don’t know, just doing my life. I think I was at a point where I was, I think in like, your 30s, you kind of know, like, okay, this is who I am now. And I kind of was, like getting that sense right before everything happened. So I was in a good place in my life, when things happen.

Bill Gasiamis 2:01
what kind of work were you doing?

Alyssa Van Steen 2:06
Just our local grocery store down the street?

Bill Gasiamis 2:09
Yeah, so very locally focused, focused in the community. I imagine that it’s pretty rewarding meeting the locals. Everyone knows you. You know them. Is it a small type of community? What’s it like?

Alyssa Van Steen 2:26
It’s smaller, but I’m still in Orange County in California, so it’s, I mean, it’s busy. There’s a lot to do and but the where I live is a little bit more slower and family driven. But yeah, the grocery store that I work at is the more sought out, I think, the sought after grocery store, so it’s busy, busy, yeah.

Bill Gasiamis 3:01
And what did you do to for downtime? Did you have some stuff that you did on a regular basis that you enjoyed doing, getting out and about? What? How did you occupy time other than work?

Alyssa Van Steen 3:13
So other than work, I am an artist, so I work with cut pieces of paper, and I’ll do like hand painted and at the mouth and and I did that as well for work as well. I was on the in the art department for my work as well. And so that was kind of like what I spent a lot of my time with as well, as well as gardening.

Alyssa Van Steen 3:46
I’m a big gardener, and yeah, I’ve transformed my yard, the front yard and the backyard, many times. So yeah. And then other than that, I love to walk my dog. Um, my dog’s a 75 pound dog, so I, you know, he needs a lot of walks. And I love to walk and so that is a, yeah, that’s where I was at, right now.

Bill Gasiamis 4:19
You walk dogs, you or you walk your dog.

Alyssa Van Steen 4:23
Oh, my dog, my dog, yeah.

Bill Gasiamis 4:25
But it’s if it’s a 75 pound dog, you’re not walking it. It’s telling you.

Alyssa Van Steen 4:32
no, he’s a good he’s a good listener.

Bill Gasiamis 4:39
Fair enough. So did you study the arts?

Alyssa Van Steen 4:44
I didn’t. I actually went to school to become a teacher, and I graduated, and I ended up kind of thinking like, Oh, that’s not really what I want to do. So I was like, Oh, I’m just going to do. Work, and I’m just gonna do my art on the side and garden and do my thing. And, yeah, that’s where I was at.

Bill Gasiamis 5:07
It was just like a hobby that turned into something that you were getting paid to do.

Alyssa Van Steen 5:12
Yeah, yeah, that’s pretty cool.

Bill Gasiamis 5:17
So tell me. Do you recall the time when at 31 something went wrong. How did that day unfold? What happened?

Alyssa Van Steen 5:28
Yeah, so my stroke happened on Well, I guess all before everything happened, it was April 23 was the first day that I went into the hospital. So it was about a day and a day, maybe a day and a half, before April 3 that I I just kind of started to feel like I was sick. And I have had COVID before, and it really felt very much like COVID.

Alyssa Van Steen 6:03
I had body aches, I had chills, I had a migraine and no appetite, and I am someone that I have had migraines my whole entire adult life, where I’ve had anywhere from like three to four a week. And it was always under the under control, pretty much, where it was just kind of like, this is just what happens.

Alyssa Van Steen 6:31
Like, my mom gets migraines, and it was just like, oh, some people just have a more prom or, yeah, they’re just more prone to it and so, yeah, and so. But this migraine didn’t feel like any other migraine I’ve ever felt in my whole entire life. This was a migraine that I was trying to take, like, an ibuprofen, just to like help, and I was screaming and crying on my floor like I didn’t know what to do.

Alyssa Van Steen 7:14
So it was that evening that my mom took me to the urgent care to see what was going on. And Urgent Care basically just gave me a shot of ibuprofen and sent me on my way, and I could, like, barely walk in. It was so it was so excruciating, I don’t I never want to ever experience that type of migraine. It was, it was crazy. So when I got home, my mom was trying to get me to eat, and I just couldn’t.

Alyssa Van Steen 7:52
And so she ended up, like, having to, like, spoon feed me spaghetti, because I just couldn’t even, like, lift my arms. It was, it was weird, and that was the last thing I remember. I only I remember her feeding me spaghetti in the dark because I couldn’t take any kind of lights. And the next thing that I remember, I’m waking up in a hospital bed. Wow. So what had happened was my my blood pressure went super low, and I guess I was starting to scream and be incoherent, I guess.

Alyssa Van Steen 8:42
And that’s when my mom and my brother had to call for an ambulance, and they also were saying that my heart rate was very high. And so it was about two days in the hospital where we were just testing and testing like and we we just, we couldn’t figure out what it was, what happened, and I was still having like, constant migraines. It wasn’t that same migraine, but it was migraines, right? I started to have a bladder infection.

Alyssa Van Steen 9:22
My kidneys were failing. They were talking about it was possibly ms, it was just I was on oxygen. It was like I was then I was starting to go septic. It was just like, nuts, intense. And yeah, and so it it, it took a couple of days. No, it was, it was actually two weeks, but I was in the hospital and we found out what it. It. It was so basically, I had an infection that was attached to my heart valve.

Alyssa Van Steen 10:12
So it was a rare bacterial infection that went into my bloodstream and attached itself to my heart valve. And it was deteriorating my heart valve, and so it, it was, they were like, Okay, well, we can, we can get some strong antibiotics to help this, and we probably don’t have to go in for heart surgery or anything. We could probably just like, kill it on the spot.

Alyssa Van Steen 10:46
And so that’s what we were doing. So we stayed in the hospital. I was on antibiotics for a couple of times a day. Very strong. Was like, making my hair fall out. It was crazy. So that was, and they were kind of, they were kind of, now looking like, Okay, this is the problem. And then you’re also, you’re having many strokes, and there’s lacerations on your brain. So I was like, okay, so this is but they’re like, but we’re, we’re killing the and the the bacteria, so we’ll be okay.

Alyssa Van Steen 11:29
So it was a while, and then I had to, it was May 1. Is when they were like, Okay, you can go home. And what we can do. You still have to be on antibiotics for couple, like, another six weeks or something, but we can have a nurse come out and once or twice a day and do your injection and then, or whatever, or the drip, and you’ll be fine, like, you can go home.

Alyssa Van Steen 12:06
And we’re like, okay, so I’m getting ready, ready to go home. Um, we’re waiting to be discarded, discharged. And I went up to go to the bathroom, and I was like, and I was feeling better. I was starting to feel better too. So I was like, okay, like, I’m like, things are things are looking at. Wasn’t on oxygen or anything like that anymore. And so I went to go to the bathroom, we’re waiting for to be discharged. And I come back from the bathroom, and I was like, I feel kind of weird.

Alyssa Van Steen 12:43
And my mom was in the room, and she’s like, What? What do you mean? And I was like, I don’t know. Like, something’s weird, and I don’t know how to like, describe it. And she’s like, Okay, we’ll sit down. Let’s have the nurse come in. A nurse comes in. She’s like, kind of checking me out. All of a sudden, my whole right side gets super heavy, and I know exactly what it is. I was like, I’m having a stroke, and I’ve never had any type of scare with like, stroke or anything, but I just knew, like, I knew that that that happens with stroke.

Bill Gasiamis 13:18
Let’s pause for a moment, you’ve just heard Alyssa describe one of the hardest pivots of her life, from being days away from discharge to suddenly realizing she was having a stroke her right side when heavy, her speech disappeared. Her world flipped. If you’ve been through something like that, the suddenness, the shock, the feeling of your body no longer responding. I want you to know you’re not alone, you’re not broken, you’re rebuilding.

Bill Gasiamis 13:47
Now this is recovery involved layers of trauma, rehab and fatigue, and most people never see it. And like many stroke survivors, she faced something called foot drop, that dragging, uncooperative feeling that makes every step harder than it should be. If you’re dealing with that, there’s a device that might help the bonus system. It’s not fit for everyone, but there’s free one hour trial.

Bill Gasiamis 14:13
You can try No pressure, just a chance to see if it works for your recovery. You can schedule it at locations across the United States. Now let’s get back to Alyssa as she starts to make sense of the stroke, the Aphasia, and the first steps towards healing.

Alyssa Van Steen 14:31
And so, um, once they kind of were like, I said, I’m having this stroke, it was like gangbusters. Everyone came in. There was like people were moving me around. They and then they took me to to what do you call it? The I can’t think of it to test your brain, am I right? MRI? Thank you. Yeah, I remember going into the MRI machine. And I don’t remember coming out.

Alyssa Van Steen 15:04
And so I had had a hemorrhagic stroke, and it affected my right side. I wasn’t talking much when I woke up from my stroke, and a lot of this is like things that I’ve had to be filled in from my family members, because I don’t remember a lot of it. I remember bits and pieces of when you’re in the hospital, but you don’t remember it like it happened. And you it almost it remembers. I remember it in like, little seconds, here and there.

Alyssa Van Steen 15:48
But I can’t say that like this second happened before this one and then this one was it’s just scattered. So I wasn’t, wasn’t really talking. I could say like yes or no, but I couldn’t do much more than that. I couldn’t say my name when they after a couple of days, they were trying to get me to say my name, and I just said my birthday for and that went on for a couple of days as well, where I just what’s her name, November 17, 1991 just so There was that. And, yeah, so pretty. So that was, yeah, so it was, it was a lot.

Bill Gasiamis 16:47
What was going through your mind at the time. So before that, you’re having a migraine. They come, they go, no big deal. Okay, we’re going to a dark room. Bit of ibuprofen. Things settled down, but then you went on this ridiculously wild journey in that time.

Bill Gasiamis 17:11
And then at some point, the news is getting worse and worse and worse, and then you think you’re on the way out and back home, and then you have a hemorrhagic stress. What are you thinking? Are you able to comprehend? What is going on? Are you going? How the hell did I end up here? What? What’s going on in your mind during that time?

Alyssa Van Steen 17:34
I don’t think I really like clued in that this big thing happened until, like, maybe a week or two later, when I was kind of like, oh, this happened to me. I think also like, I and I was also transferred to a different hospital. After I went into the MRI machine, they transferred me to another hospital that was specifically for, like, stroke patients. And I just, I don’t know if it was a combination of, you know, because when you have a stroke, I feel like, when I woke up, my brain was like scrambled eggs, like it just didn’t.

Alyssa Van Steen 18:20
There was no like, way to, like, sort out what I couldn’t even say in my mind, like, what’s happening to me? Like, I couldn’t even say that. It was just everything was broken. Yeah, and I it took me a long time for me to be like, Oh, okay. Like, this is what happened. And I and I also had, and I had aphasia as well. So that was, like, really difficult for me to try to even try to talk, because it wouldn’t really come out.

Alyssa Van Steen 18:59
I would say, say things, and I could say, like one little thing, I couldn’t say, like a sentence, or I couldn’t even say, like three things, three, three words in the order, you know, I could only say, like, one or two things. So it was, it was difficult to, like, have my family talk to me and me communicate, respond, yeah.

Bill Gasiamis 19:30
So what was so sounds like, life after stroke changed dramatically, right? What was like? What was it like? What could you do? What could you not do? How did your body feel? What deficits did you have? How did it change?

Alyssa Van Steen 19:50
Well, I couldn’t walk anymore. Couldn’t go to the bathroom by myself anymore. My whole right side was completely. Uh, numb and limp. So it was it, it wasn’t until so they also, they kept me, I, you know, I kind of went moving floors, ICU and different things and, and then they were like, I think because her age and the type of stroke that I had, they were like, you would do really well on a rehab floor.

Alyssa Van Steen 20:30
And so I was like, okay, like, and I remember, I do remember, actually kind of saying, like, I just want to go home. Like, saying something like, I just want to go home. And my parents were like, no, no, you’re going to go to the rehab floor, because this is going to be better for you in the end. So like when you do go home, you need to be able to have a little bit, like a leg up on your rehabilitation.

Bill Gasiamis 20:55
And your mom, did your mom promise to bring you food and feed you pasta while you were.

Alyssa Van Steen 21:03
Yeah, well, my family was really good, too. Also, like, a little bit about me. I’m terrified of any type of doctor’s office, so this whole thing was so already, the fact that, like, I had to go into on like an ambulance and I’m in the hospital, was traumatizing, yes, and so I’m so squirmish around like needles or whatever. And so the whole time that I was at the hospital, my parents made it a priority to like, no matter what, like, at least one person stays with Melissa, whether it’s just my parents or my brother, like there is one person that will be there with her.

Bill Gasiamis 21:50
Can I a little bit just be just sorry to interrupt? Can I unpack a little bit so my wife is not afraid of doctors and needles and all that kind of stuff. She doesn’t really enjoy needles, etc. I’m the opposite, right? So I love doctors because doctors make you better, because hospitals is where people go to help be patched up and fixed up and then sent home.

Bill Gasiamis 22:18
So my I don’t get how people are afraid of doctors, doctors, surgeries, hospitals. Are you able to unpack that a little bit and just give me an insight so I can kind of understand.

Alyssa Van Steen 22:30
I think, you know what? I think from my own experience, I can’t really say about like my family, that that were also going through with me. But for me, I think the the only times I would ever be in a hospital was when I would be watching my grandparents die. Okay, and so I’m like, this is where people die. Got it?

Bill Gasiamis 22:59
I completely get it. So I don’t I know that people have to pass away at a hospital from time to time, and that’s kind of where they end up. I get that, and I know what you’re saying. So it’s just literally, it’s like your experience probably also as you were younger, with older grandparents, and you have to go and see that and experience that.

Bill Gasiamis 23:22
Go through that process with them. Okay, yeah, I totally get it. Now I know exactly why. All right, let’s pick up on your in hospital. Mum’s bringing you food, and everyone’s staying with you. One person is staying with you all the time because of your experience, let’s and then what?

Alyssa Van Steen 23:46
So I was on the rehab floor, and we were doing rehab, and that’s, you know, there’s speech therapy, there’s occupational therapy and physical therapy. And the way that I it was set up in this hospital that they had a schedule put out for you the next the night before, and they’d say, like, 7am you’re going to have speech, and then at 730 you’d have so and you’re, you’re going, going, going.

Alyssa Van Steen 24:22
And I think because, also because I was younger, they were like, We’re gonna work her as much as she can. And I think when I got to the rehab floor is when I start to remember my memories. I don’t remember a lot from before that, but I also was starting to talk a little bit more when I was on the rehab floor, and it so I remember being like, I’m here to work. Like, this is like, no, bring it like you’re gonna if you want to.

Alyssa Van Steen 24:59
If you want to have me, like, two different PT sessions in one day, like, we’re going to do it. Like, let’s do it. Um, and I was so like, I get I’m just, like, so grateful for the the rehab floor and all of the people that work there, because, oh my gosh. Like it’s crazy. How much, how, how much knowledge they have to fine tune little things for every little need that you might have.

Bill Gasiamis 25:11
So you embraced it so there’s no denial of your condition, There’s none of that stuff. No resistance to what you needed to do, the hard work that was coming up, that you needed to do. You were just up for it.

Alyssa Van Steen 25:53
But I also wasn’t, you know what? It’s funny, because I really was just kind of focused on, like, right now. I wasn’t thinking, like, Well, when I go home, what’s gonna happen? Can I am I gonna walk when I go home? Like, I just didn’t even think about that. I was just so focused on, like, no, no. This is what’s going on right now. Like, let’s just focus on right now.

Alyssa Van Steen 26:14
Because I think I didn’t even there wasn’t there was a like, towards the end of my stay, there was a moment where I was like, wait, I can’t even, you know, my right is my dominant hand. And I was like, I can’t write with my I don’t, I can’t write right now, like, and I, that’s what I used to do for work, like write and draw and, you know, cut paper and like, I was like, I can’t do that. And I remember breaking down and like, and, yeah, it was, it was rough.

Bill Gasiamis 26:53
So one stage, the majority of the time you’re going day by day, it’s about focusing on the task at hand. I did something similar. I never once thought about what it would be like when I went home. When I went home, I was more capable than I was when I started rehab. I could walk and I could use my left arm again. They weren’t perfect at all, but they were I was still able to make breakfast and a cup of tea and that kind of stuff.

Bill Gasiamis 27:22
So all the usual stuff were okay. I couldn’t walk work. I probably couldn’t work. So I didn’t occur to me at all, not once in my head, like, I’m going to go home next week and I’m not going to go to work, I’m not going to do anything, I’m just going to be at home waiting for more rehab. I had a patient rehab to go through, but you’d you’d had that realization, it was like The what now moment like, how were you afraid that you weren’t going to rehabilitate further, that you were going to be at home. What was the, what were the thoughts or the concerns in your head?

Alyssa Van Steen 28:10
Yeah, because I was like, I can’t even go to the bathroom by myself, like, you know, like that didn’t like I even when I when I got home, like, I still didn’t, like, I could go to the bathroom, but I had to have, like, someone watch, like, kind of watch me walk in, make sure I’m okay. Like, it was not it, yeah, there was so much more to go that I think I was it. It’s better. I think it was better for me to just stay focused on, like, what’s going on today?

Alyssa Van Steen 28:44
Because I think when I had that moment of like, wait, I can’t even write my name, like it, that just like, destroyed me. And so I worked and worked and worked, and I was also still being given the antibiotics for the bacteria in my heart, and it was not working. They were saying that, well, we killed the germ, but it destroyed that heart valve. So you’re going to have to have open heart surgery, and you’re going to have to have a valve replace.

Alyssa Van Steen 29:31
And so I was like, I think that day, I was like, it was like, I think I only had one more, one more thing on my to do list, and it was physical therapy, and it was at the end of the day, and one of my doctors came in and was saying, like, Yeah, this is like, this is happening. Like, we have to do it sooner rather than later. You are going to have a lot of restrictions and things that you can’t do once you have the heart surgery.

Alyssa Van Steen 30:10
You’re going to have to be on the cardiac floor for a week. You won’t be able to raise your arms, you won’t be able to push out of bed, you you and so there was so much in my head. I was like, I won’t be able to I have, I already have all these restrictions with losing my right side. I can’t even, like, do any I can’t do things. I can’t even get up out of bed. And now you’re I have more restrictions. And it was like, it was really hard.

Bill Gasiamis 30:44
Full on. So what kind of timeline did all this stuff happened? So from that crazy headache to the bacteria being found, and by the way, I still have to ask you about the hemorrhagic stroke, then the hemorrhagic stroke, and then the heart valve surgery. What’s, what was the timeline?

Alyssa Van Steen 31:06
So I went into the I went into the first hospital on April, in April, and my heart surgery was on June 7. So that whole time I was still in the hospital. So I was in the hospital for a while. And so, yeah, and I remember that day too, when they were kind of, they told me about the heart surgery, and I was really, like, distraught about it, and then, and I just knew I was like, I don’t want to go to physical therapy.

Alyssa Van Steen 31:39
And that was the first and only time I’ve ever said no to one of my therapies. And my mom was like, okay, when she was walking down the hall and she saw one of my therapists, and she was like, she doesn’t want to, she’s really distraught, like, she doesn’t really want to go. And she’s like, Okay, well, I’m gonna, I’m still gonna, like, peek my head in, in like, 3030, minutes and see what happens.

Alyssa Van Steen 32:03
And she peeked her head in, and she’s like, how are you feeling? And I wipe my eyes. I’m like, let’s go. Like, I was just like, Nope, we’re gonna go. And I ended up having the best session that day. I walked a lot more than usual. We did steps like it was just, and I think that was like, that was just like, one of the things that really, like, solidified in my brain that, like, you’re gonna have to work hard, but the payoff is going to be so much better.

Alyssa Van Steen 32:36
If you just keep going. And so I was just like, I think from, I mean, I was already in that headspace, but even when I was not wanting to do things, I was just like, you’re never going to say no to any of this now, like, I’m never going to say no to any of my therapies. I’m always going to try, because even even the things that you don’t want to do is going to benefit. You in one way or another, even if it’s the smallest amount.

Bill Gasiamis 33:08
I love that. It’s a great attitude to take into the next phase of your surgeries, of your medical interventions. We know what caused the heart valve issue. We know what caused the massive headache. It was the bacteria, what caused that brain hemorrhage.

Alyssa Van Steen 33:27
So the heart valve was not pumping enough oxygen or blood to my brain, and it is it caused me to have a stroke.

Bill Gasiamis 33:41
Did it cause an actual bleed in the brain? Yes, that’s so bizarre. How would it do that? I mean, maybe you don’t have the answer, but that’s okay.

Alyssa Van Steen 33:52
I don’t know. And it was also, I was, you know, it was also like the infection was in my blood. It wasn’t just in one place, so I don’t know if it was, yeah, I don’t know. It was crazy. And then the fact that, like, the type of stroke that I had, people would walk in, like nurses, and they’d be like, Oh, this is not what I was expecting.

Alyssa Van Steen 34:18
And so I was like, Oh, okay. And I didn’t get it until I was out of the hospital where I was like, oh, a lot of people don’t survive this type of stroke. Like hemorrhagic strokes are not like they think it’s like, 2620 25% survival rate. And I was like, okay, like, now I get it. But at the time, I was like, What? What do you mean?

Bill Gasiamis 34:46
It’s a big deal that they’re treating a hemorrhagic stroke survivor. It is a big deal. The numbers are not that good in the favor. They’re not in the favor of. The person having the hemorrhagic stroke, that’s for sure. So you know that last PT set or that therapy session that you had was that kind of like a mind shift? Was that a moment? Did that help you prepare better for the heart surgery? How did that change the way that you were going to tackle the heart surgery. Did it help?

Alyssa Van Steen 35:24
It totally did. I think that was like, and that was when I was in that therapy session, and I was working hard, and I was having that revelation in my head afterward, too. I was like, okay, like, this is my one day of like, I’m like, down the dumps about having to have all these things happen to me. The next day, I woke up and I was like, I’m ready. Like, I’m ready when, when’s the surgery?

Alyssa Van Steen 35:52
Like, let’s do this. And up until I went into surgery, I was like, in good spirits. I was like, people are they’re going to take care of me. Like, this is what’s going to happen. I have to do it anyways. Let’s just put a smile on and let’s do it like and we had, again, I had such a great team of people that were preparing me, and it was just, it was great. And then coming out of the surgery was really rough, because open heart surgery actually does feel like you got hit by a truck.

Bill Gasiamis 36:33
And opening up your your rib cage.

Alyssa Van Steen 36:39
Yeah, wow, so you’re when I woke up, it was just like, I could barely speak. I couldn’t even, like, breathe without hurting. And it was intense. And the next day, they have to, they get you like, you gotta, you gotta stand up. You gotta be moving. And I was like. I was like, okay, someone’s gonna have to, like, Help me up, because I can’t get up. And, yeah, it was, it was rough. I was in pain for a while.

Bill Gasiamis 37:17
What was the biggest challenge that you faced during the recovery, after all of that stuff that you’ve been through, this was the last hurdle, a massive hurdle, but the last one, what was the, what was the, what was the hardest part about that recovery? What would you say?

Alyssa Van Steen 37:44
I think I don’t know if anything really sticks, other than the fact that, like I it was, it was all very challenging, and it was, but I don’t have anything that really sticks out where I’m like, that was the hardest, because it was, it was all hard. And they were, and, you know, when I went to the cardiac floor too, they were like, sending physical therapists to make me walk around the halls, and I had, like a pillow on my chest to make sure that, like nothing was going to happen to my chest, if anything, if I were to fall.

Alyssa Van Steen 38:28
You see my walker, and I had my AFO at this time. And so I was, I was able to walk. I every once in a while I’d have to sit down in a wheelchair and have to rest a little bit. But it was, everything was doing well. And my heart was, everything was looking up. They, they had a put, like a pig implant in my my valve. So it’s a pig valve that they and it’s, it’s working great.

Bill Gasiamis 39:02
You’re one of those modern miracles. You know, just the fact that you went through all of that stuff, a little bit of a piece of this here, and a piece of this there, and a intervention here. I mean, everything that you went through to get to where you are today is an absolute medical miracle. Is a religious miracle, whatever you want to call it. I don’t mind what you call it. It’s sensational, isn’t it that, yes, you went through all of that trouble, and here you are. We’re on a podcast. We’re talking about it. I love it.

Alyssa Van Steen 39:37
It really is. And I know and I knew it from the very beginning, because I didn’t, I think it, it wasn’t until I got home from the hospital that I was like, starting to go through the ups and downs of coming home. You know, when you it’s, it’s rough. You. And because I really did believe that I wasn’t supposed to be here by the time I got home. But in the hospital, I was like, no, no.

Alyssa Van Steen 40:10
Like, this is good. Like I’m I can do this, but then when I got home, you know, life changes significantly. Like, we have a we have a tri level house, and I can, I couldn’t do the stairs, so we had to move my bedroom downstairs. And it was, I was sleeping so much and like I, you know, it’s hard for me to put, even put on my shoes. And it was, and there was so many medication I went home with 10 different medications.

Alyssa Van Steen 40:41
It was so rough I had, and you might know this too, like, when, when? Because you had a little bit, you had your left side was affected, right? Yeah, yeah. So when you’re the side that’s affected tries to, like, come back online, and your it almost feels like bugs are crawling up your legs or your arms. But it’s painful.

Bill Gasiamis 41:10
Yeah, I get, I used to get, like, little electrical shock, things happening, coming through, and, like, I know, like, zapping my hand and kind of trying to bring it to life, you know, like, I don’t know. Like, yeah, I can’t explain it. Like, there you go. It was just some electrical impulses that zapped my hand, made made it feel like it was, like, there and it was painful and it was annoying, but it wasn’t constant, and it was twitchy. It would twitch.

Bill Gasiamis 41:47
And that would happen. I would lie down, sometimes in my bed, sleeping or just about to nod off, and then my entire left side would do this massive like jolt, and it would just move for something. It did heaps of weird things when it was coming online and I had to get my coordination back. And my left leg, I have numbness and sensory issues on my left side, and the muscles are tighter, and my left leg would buckle, so the knee would just kind of collapse and buckle when I walked.

Bill Gasiamis 42:25
And then my eye. Because up until from the age of five to 40, I wore glasses, and I was used to doing the old push up the glasses, up your nose routine as they slide down. Just push them up, push them up. And at 40 in June, on my 40th birthday, June, July, somewhere there, mid, mid year, I had surgery, cataract surgery to remove the cataracts in my eyes to which then restored my vision, and I didn’t need glasses, but I was used to pushing the glasses up my nose, and I kept doing that for a long time after I had finally gotten rid of the glasses.

Bill Gasiamis 43:17
So in November 2014 this all happened. In 2014 I had the brain surgery my left side’s not working properly, but I’m lying down in hospital, and I remember being in the rehab facility, and I go to fix my glasses, but because my coordination wasn’t right, poke myself in the eye, and then I would continue to poke myself in The Eye regularly because I went to fix my glasses and missed the middle of my head and got it into my eyeball. So that took a little bit of getting used to both the not fixing my glasses that weren’t there, and also dealing with the poking of my eye.

Alyssa Van Steen 44:01
Yeah, it I was so thankful I didn’t have any kind of, like facial anything with my stroke. I think it was like a day or two like my stroke happened. I had a little bit of slight, like, down, turning on my on my right side, but it kind of corrected itself. And so I was so thankful for that, but oh my gosh, the at night, I would just feel like bugs were crawling and biting me on my right side, and it was so painful.

Alyssa Van Steen 44:37
And my I was also like, I also lost quite a bit of weight when I was in the hospital. So I was only about 100 pounds, and I’m five eight, so I’m I’m pretty tall. So they were like, well, we can’t give you any more medication, so you really just have to put a bunch of ice packs on you.

Alyssa Van Steen 44:58
So I was like, laying. Bed, just like a bunch of ice all over me trying to sleep, because that is just it’s so painful to have, like, your body is responding but doesn’t know how to, like, come back online and like, Hey, I’m here now, like I’m I was asleep, but I’m awake now. But they don’t, they don’t know how to react.

Bill Gasiamis 45:28
Did you ever do the pity party? Did you ever want to give up and say, oh, forget this. I’m not doing this anymore. Did you ever have moments?

Alyssa Van Steen 45:34
When I got home? Yes, I had a lot of days where I was like, throwing my cane around, like, and I was just mad that this was my life now I really, like, you know, and then like, I’d go to, like, trying to wean myself out of off the medication, but the because I wanted to not have to take so much medication, and I would try to wean off, off of the medication, but then it wasn’t working, so then I have to go back on it, or, like I was trying to hold out.

Alyssa Van Steen 46:12
And I would just, like, collapse into, like, this breakdown where I was like, I just, I didn’t want to be here anymore. I really didn’t want to live, I didn’t want to live this type of life like I didn’t think that I was supposed to be here anymore. But it, and it took me, like, a good month to, like, get out of that headspace. I got home on she June, June 26 is when I got home. It took me a good month for me to like, get out of that headspace.

Bill Gasiamis 46:53
What year was that?

Alyssa Van Steen 46:56
2023.

Bill Gasiamis 46:58
It’s very, very recent.

Alyssa Van Steen 47:01
So, um, but that I also, I think you it’s, it’s, I don’t think that, like, I don’t look back on, like, the little pity parties and saying, you’re like, oh, I shouldn’t. I should have just, like, sucked it up or anything, because you have to go through that because, but also, like, I wasn’t. I wasn’t saying, like, No, I’m not going to, I’m not going to do therapy, or, like, No, I’m not going to practice my hand movements, no, I’m not going to, you know, work with my Play Doh today, or, like, whatever. Like, I was like, I still did all that.

Bill Gasiamis 47:38
So it was more of an expression of your frustration and the realization that I’m in this completely different world than I was three months ago.

Alyssa Van Steen 47:49
Yeah, because I was like, how am I supposed to, like, go to work, how am I supposed to do anything? Like, how am I supposed to I don’t know how long this is going to last. Like, because in the hospital, I was kind of like, I think I got the idea of, like, no, no, I can do this. Like, I can ill. I think the misconception with like strokes, I think if you haven’t had one yourself, or if you haven’t had a loved one, had it, had one, you you’re under this impression of like, oh, okay, oh, well, he’s driving again, so it just comes back, like, or you’re walking again, so it just comes back.

Alyssa Van Steen 48:28
It doesn’t, it doesn’t just come back. You have to find new pathways in your brain to now learn how to walk, learn how to drive, learn how to talk. It’s it doesn’t just come back.

Bill Gasiamis 48:45
And often not in the same way that you had it before. It’s not the same. It’s different version, and it’s usually different on one side of your body, which makes you focus on the difference. Like, my left side feels like this. My right side feels like that. For me, that’s kind of the part that’s still kind of I grapple with. It’s like, I wake up in the morning. I gotta get out of bed. My right side’s up and awake and ready to go. My left side still needs another half an hour. That’s why we when we connected at around eight o’clock Melbourne time, I was still half asleep.

Bill Gasiamis 49:20
Because, literally, half asleep. How about that? Yeah, because my left side just it doesn’t want to move at the same pace as my right side. Actually doesn’t want to do that at the same pace. Needs a lot longer. My leg needs to wake up so that it does come back. And everything appears normal to me if people look at me.

Alyssa Van Steen 49:43
Yeah, that’s so funny that you said that, because that’s like, that is so what you feel like, even today, when I got up, I was like, oh my god, I’m so tired, but I’m like, ready to wake up, but like, I need to lay down a little bit longer. And there’s, there’s days where, like, I’m getting ready for work, and I. Day and I’m like, I have to sit down. Like, I can’t, like, I can’t just, like, get up and go, like, like I used to, like, I have to, like, take it easy. You need to, like, have rest days.

Bill Gasiamis 50:11
Those running late days, running late days, right where you used to wake up, no breakfast, throw your clothes on, yeah, either jump in the car or walk to the train station or wherever, and just go to work, no big deal, and just, there’s just another day. They they don’t happen for me like that. I’ve got to be up, I’ve got to have time. I’ve got to settle into the day before I even get started.

Bill Gasiamis 50:39
It takes a while. I’m curious, so you would have been, you sound like you were a person who had a bit of a social life. You would have had friends. You would have had people in your life other than work. Then you’re in hospital for three months. How do your relationships change? You know, did some people step up extraordinarily, like, what happened there with your personal life?

Alyssa Van Steen 51:06
I think that, um, I’m I have a lot of family friends, but I have two really good friends that they were actually on a cruise when all of this was happening, oh my gosh, and so and they were like, you know, I’m sure they were like, so distraught by it, but then when they came back, I had told my mom and my family, like, I don’t want people in the hospital with me. I don’t want, I just want my immediate family. I don’t want aunts and uncles, and I don’t.

Bill Gasiamis 51:47
The whole extended family in there.

Alyssa Van Steen 51:51
It’s just too over stimulating. I think it’s like, yeah, and it’s just, like, too much for me when I could, you know, and I was, at the time, like, I was still not able to, like, speak that great and like, I just, like, didn’t want people to see me, like, you know, it’s just it wasn’t my thing.

Bill Gasiamis 52:14
It makes sense. Well, firstly, it’s, it’s hard. We’re the same, like my family, Greek family, like everybody was there. Everybody actually came. And I didn’t have the opportunity to think about that, because I went from, you know, being two, two brain hemorrhaging in within six weeks. That’s a little bit but upright. But see two brain hemorrhaging, but upright in some kind of a strange way.

Bill Gasiamis 52:45
So when people saw me, they didn’t really have the deep desire to completely overwhelm us with love. They were just okay. He looks all right, like mustn’t be that bad. But then, after the brain surgery, when they find out that I can’t walk and, you know, my head has got a massive scar on it, and I’m in hospital and I’m lying down, well now they can see that that’s more dramatic than what the two brain hemorrhaging looked like early on, it looked way more dramatic.

Bill Gasiamis 53:21
So they all came, and I didn’t have the opportunity those first few days to think about, who do I want there? And they were all there. My wife was overwhelmed. I was overwhelmed, and it took about two or three days before I realized we can’t have that many people in the room. It’s way too many people we can’t be dealing with everyone else’s emotional baggage that they bring without knowing that they’re bringing it and making it burdensome. They don’t know. Yeah, they come for the right reasons, but it’s the wrong time to turn up for the right reasons. You need to come later.

Alyssa Van Steen 54:00
Right and, and my best friend actually said she said this to me multiple times afterwards. She’s like, I I just know you and I know that you wouldn’t want me to go to come in anyways, because I remember my my mom had said something like, why don’t you just come anyways, even though she doesn’t want and she didn’t, and I’m glad she didn’t, because she knew me, whereas my mom was more of like, I just want people around her. Maybe it’s going to make her feel better.

Alyssa Van Steen 54:33
You know, you don’t, she doesn’t. You don’t understand it, unless you’re in the hospital bed and then when and when I was having my stroke, there were people that were around me, but I, I mean, they said that I was No, I didn’t even know, and so I, I don’t have any, I don’t have memories of those people being there, but they were just like, I mean, they all. Had said, like, it was really terrible. I’m like, yeah, it’s not great. It’s not really like, what I don’t I don’t want people to, like, remember that time.

Bill Gasiamis 55:12
That’s cool. I totally get it. So you’re back into the land of the living everything is going great. As far as the medical stuff is all behind you, the actual critical, urgent, acute medical stuff is all behind you. How does life evolve now into what you’re doing now into how it’s got you to where you are today? So I heard you say a little earlier that you’re back at work. So tell me a little bit about that transition from bedroom after the hospital bed, bedroom downstairs to outside world.

Alyssa Van Steen 55:51
I think I was determined. By the time I got home, I was like, determined, like, I will go I will get upstairs, I will get back into my room. I will do these things. I will drive again. And that was, those were my goals. I was like, that that was more my set. I set my sights on it. And I was like, even if I’m going to be struggling up and down the stairs, I’m still going to be doing it.

Alyssa Van Steen 56:20
And so I moved back upstairs when it was very difficult for me to go up and down the stairs, but I could do it safely with my hand handrails, and I had, I was still wearing my AFO, and I could do it. It takes me, it takes a lot out of me to just go up down the stairs, but I’m gonna do it. And I did. And same thing for the driving thing. I now drive with my left foot.

Alyssa Van Steen 56:50
I have my my pedals are reversed on my car now, and I have, like, a little steering knob, yeah, and that was really exciting. So once that, once that happened, once I got back into my car, which was, um, last fall. It was like, September, um, 2024, I was like, the minute I am able to drive around, I’m going back to work. So I was like, even if it’s too soon, I’m doing it, and I will figure things out when I get back to work once I’m in the job, if I if I need little leeways here and there. I know that they’re gonna be there for me.

Alyssa Van Steen 57:44
Let’s just go. Because I didn’t, because I think you can, you can say like, Oh well, I don’t know if it’s time yet. And it’s like, you’re never gonna know when the time is. You just gonna jump in the deep end, right? And so I also was, oh my gosh, was that? I think it was last summer as well. Yeah, it was last summer as well. So I was 2024 I also ditched the the brace and a device on my leg that by an S device that helps me walk, and I was able to put down the neighborhood that I can, I can do more.

Bill Gasiamis 58:36
Sounds like you’re it sounds like you’re driving.

Alyssa Van Steen 58:39
I’m gonna. Now, I don’t.

Bill Gasiamis 58:45
Connection issue, it sounds like the driving was your I’m back moment. It sounds like that was the kind of defining moment you got into the car, you became independent again, and you were going to find a way to overcome all the other stuff as well.

Alyssa Van Steen 59:03
Yeah, I was like, once I’m driving, I feel like I got a sense of my like, life back, like I was able to, like, go and go to therapy by myself, like, or because I was doing outpatient therapy as well. And I was like, it was, it was crazy. And so I felt like, Okay, I had my independence back. So I went back to work in last October, and it was a, it was a transition. It was, it was difficult, but it was great.

Alyssa Van Steen 59:46
And I could have asked for shorter days, but I didn’t. They were just, they were all eight hour days, and I was like. If they that, I just knew that they the way my work is. They’re just so accommodating for anything and anyone, really. So I just knew that, like if I needed a shorter day, they would help me. If I needed to work less days, they would help me.

Bill Gasiamis 1:00:20
And so as your role remained the same.

Alyssa Van Steen 1:00:25
My role has been, yeah, it’s the same now I’ve, I am able to, I can, I can write and I can cut. And the way I my my writing, it looks nice, but it’s not. It doesn’t look like my writing. You know what? I mean? Like, it’s gonna, it’s gonna take me some more time, but I can do the work at work for it, and, and, yeah, and it took me a while to, like, be able to, like, get on ladders.

Alyssa Van Steen 1:01:05
And a lot of you know, we work, we work with, like, a lot of boxes, and sometimes heavy boxes and but there’s always people around. So if I really needed to, if I really needed someone to, like, help me with anything I could. But now I feel like I’m at a good place where, like, I really don’t need people to help me.

Bill Gasiamis 1:01:30
Yeah, that’s excellent. What is what have you? What have you learned about yourself during this time? What a stroke taught you, or the heart condition taught you, or everything that you’ve been through taught you, my gosh, there’s so many things that you’ve been through. What are they taught? What are some of the lessons?

Alyssa Van Steen 1:01:48
It’s funny too, because I was listening to one of your your vlogs that you had put up, and you said something that I’ve always said to my mom, is that this stroke has been the worst and best thing that’s ever happened to me. I don’t think I would have known a sliver of how strong I am until I went through this. I have this, like, listen, we also we, I still have my bad days. This is not, like, you know, I’m not, I’m not saying that I don’t have bad days.

Alyssa Van Steen 1:02:30
There are days and I there’s a lot, a lot of things that I still have to work on. But I just, I, I’m, I am, I am capable of doing so much more than I thought I would have ever been able to even think about doing. So it’s been, it’s been really eye opening, especially for my age as a person.

Bill Gasiamis 1:02:58
You’ve changed as a person as well. So how have you changed as a person?

Alyssa Van Steen 1:03:07
I think I don’t like, I don’t have the trying to say it, like, kind of nicely, there’s, I don’t, I don’t have the time for any of the BS, you know what’s, you know what I’m talking about. I don’t have, yeah, like, I don’t have, I don’t have that in my brain where I’m like, this, doesn’t it? That doesn’t matter. It’s not for me, you know? It’s not. I think when you go through things like we both have been through, it’s you’re like, that little in this big world.

Bill Gasiamis 1:03:52
It sounds like your focus has changed from the little things to the more important things, whatever they are for you.

Alyssa Van Steen 1:04:01
I mean even if something for me is to, like, go out with, like, go buy tickets to a concert or something, it’s not. It’s what’s making me happy right now, and it’s not, I think you kind of get stuck in this, like, oh, well, is this?

Alyssa Van Steen 1:04:30
Should I be doing this? Or should I be saving my money for this? Or should I be doing this? Or should I be worrying about the next thing that’s going to happen? And I feel like, with a stroke, you’re just kind of like, No, you’re just gonna, you have no guarantee. There’s no guarantee, like, for anything. So it’s like, who cares? Like, go.

Bill Gasiamis 1:04:52
There has to be money or whatever. I agree. I agree. There’s part of me that’s like, all right, save for a rainy day. I. Yeah, but, but say for just a few of them, not for 1000 rainy days, right? Just say, for a few rainy days, so that you know, you get into the habit of not blowing every single dollar you made the last week, which is cool, but also experiences. I think it is, for me, like it’s about experiences and people. So if you give me your time, oh my gosh, like I’ll do anything for somebody who gives me their time.

Bill Gasiamis 1:05:29
I value time more than I’ve ever valued it, and that really is something that I see as being the only true i it rich. Riches, the only true riches is time, how much time we have, and we don’t know how much time we have. So that’s the problem, right? So, yeah, which I experiences? Can we have this experience like, say it’s a traveling overseas experience. It’s like, well, we could, we could do it on a budget, which means we still travel overseas, we still see that place, thing, those people, or we can do it five star all the way, which we’ll never be able to do.

Bill Gasiamis 1:06:18
We’d be broke in no time, and we wouldn’t be able to experience anything else after we came back from that event. So for me, it’s like going all right, how can I do what I want to do? How can I have that experience in a way that supports me what I want out of it, and allows us to also be able to buy food next week or tomorrow or whatever? And that before, I used to be in this pattern of, we can’t go anywhere, we can’t do anything, because something might happen down the track, and then if we are not, you know.

Bill Gasiamis 1:06:57
Five years ahead on our mortgage, or 10 years ahead on our mortgage, or any of that stuff, well, it’s going to be all ridiculous and terrible, and oh my god, we can’t spend any money on anything. And then I got the sickest you could possibly get. Things were so terrible. Everything was so bad for such a long time, for at least three years for us. And even though we I had created that buffer of if something goes wrong, which I want to be okay for 10 years without working, if necessary.

Bill Gasiamis 1:07:30
Even though I created a buffer like that, it actually meant nothing, because I didn’t know whether I would be here tomorrow or the next day. So or fantastic. You don’t have to work for 10 years or forever. You might never work ever. You might not come out of the hospital after your brain surgery. So it’s like it meant nothing. Things didn’t seem to have the importance that I imagined in my head that they needed to have. Now I’m not saying that a lot of people don’t have a different experience than us. They definitely do, and I get everyone has a different way of approaching that.

Bill Gasiamis 1:08:07
But for me, it helped me break down some negative thinking patterns and barriers where I was missing out on life while trying to preserve my life. If my life went wrong, it’s just it was backwards. It didn’t make sense. I wasn’t living for my life right now, while I was in it, I was preparing for a life I wouldn’t be living kind of thing so weird. I don’t know it’s so weird, I can’t explain it, but like you, yeah, I look at opportunity to have an experience is something that I need to make happen, rather than not make happen.

Alyssa Van Steen 1:08:49
Yeah, it was. It does put this like perspective in you, and you’re like, I can’t get rid of that perspective anymore. There’s no way of like going back to the way I thought before. So it, yeah, like I said, like to put the nice, nice way, like, there’s just no room for the there’s no room for that type of thinking of you. We’re just never promised anything. So it’s, it’s just better to, like, at least have some time to have fun while we are we’re here.

Bill Gasiamis 1:09:30
One of the things that was really cool recently is somebody was watching one of the interviews I was doing, I think, or maybe one of my vlogs while they were in hospital recovering from a stroke.

Alyssa Van Steen 1:09:44
I heard that one that you were, what you were telling me, that while your video was telling me, yeah, I did. I did hear that. I thought that was so cool, because I really, because you were kind of saying, like the way. That you in the hospital and you were almost you were already thinking of doing this podcast, basically, in one way or another.

Bill Gasiamis 1:10:10
I had rolled out. I had rolled out of surgery, couldn’t walk. The first day of not walking, they hung me up on a on a on a device where I was attached to the ceiling so that my feet are touching the ground, but I’m not at risk of falling or collapsing or anything like that. It’s to take the weight off of the therapist so they’re not holding my body up while I’m trying to learn how to walk again. And we knew then that things were pretty serious. I couldn’t walk, and they needed to put me in a month of a two months of rehab they were going to put me into.

Bill Gasiamis 1:10:47
So I’m going through this after seven days of being in the hospital, in recovery, day one day one of therapy was moving me just from hospital to the therapy room. And while they were putting me through, I go through this door, and on the top of the door, it says the transit lounge. And I’m like, Wow, that’s pretty cool. I’ve been to transit lounges before. They were all for a trip overseas or somewhere exotic that I hadn’t been before. This one was a little bit weird. The name of the room was a bit bizarre.

Bill Gasiamis 1:11:19
But I knew what it meant for me was I’m going from where I don’t want to be, where recovery has sort of paused, it’s not happening much more, to a place where recovery is going to continue and I’m going to get better. And I thought, wow, that’s cool. And that became the first name of my podcast, and it was the transit lounge podcast when I first started. And that podcast was about 10 or 20. Was about 20 episodes, I interviewed people who weren’t stroke survivors. We were talking about recovering from something serious.

Bill Gasiamis 1:11:55
And when we got to the end of that, I didn’t feel right about it. And then I realized I should be interviewing stroke survivors, and then their recovery after stroke podcast happened. And I don’t know, I cannot remember how I joined the dots between about 2015 when the podcast started, middle of 2015 somewhere there, to November 2014 where I saw that lot sign and said, Oh, that’s a cool name for a door for a room. I had no idea how I connected the dots and then turned it into a podcast.

Bill Gasiamis 1:12:33
But was happening in my mind, and I was doing a lot of those things in my mind that that helped me with my recovery. One of those things I was also doing was, um, I was imagining myself walk. I mentioned that in the vlog, and didn’t know exactly how that was helping, but I know that it was firing off the same neurons as if you’re walking. So that was like, oh, in my downtime, without any physical effort, I can create pathways and reroute and get it all going.

Alyssa Van Steen 1:13:09
I wish I would have had that video of you talking like that when I was in the hospital, so that that makes me so happy that someone was in the hospital that was hearing that. I really wish I would have heard that, because me, I’m, I’ve always been such a walker. And I just walk like multiple times a day, and I just, I love it. I can’t get enough of it. And the fact that you have this thing that is taken away from you in a split second, and now you have to work so hard to just get it somewhat back.

Alyssa Van Steen 1:13:53
You can’t even so it was just it was really hard for me when I was, like, not able to, like, go on walks, I worked really hard, and the first time that I walked without my brace, I was on the Halloween and like, I’ll never forget it, because we went at night to walk around the the street, and I was like, I’m not I’m Not wearing my brace anymore. My brace was like, pinching me, and it was just like, just like, I’m so over this, like, I want to walk more.

Alyssa Van Steen 1:14:29
And, yeah, you just, I think, also, like, I have so many and I remember in the hospital too, I had dreams of me walking and so that made me like, think it was crazy. When you said that on the on the vlog, I was like, well, it’s crazy. I wonder if that was actually 100% right. It’s so crazy.

Bill Gasiamis 1:14:54
You’ve woken up from James before and felt like it was a real experience. Well, that’s why. Why? Because you’re actually living your your your mind, your body, your soul, your spirit, everything is re is experiencing that dream as if it’s actually happening. The fact that you’re unconscious in sleep and you’re in a bed matters not the same parts of the brain are firing, the neurons are firing, the neural pathways are wiring up. It’s all happening, right?

Bill Gasiamis 1:15:26
And that’s the thing I wanted to ask you about, like, what we might be chatting about this right now, but there could be a stroke survivor listening right now, who’s in the hospital, but what would you say to them?

Alyssa Van Steen 1:15:44
I think that I was under the impression that I would be like healed at some point. And now it’s 2025 I’m approaching my two year and you had said something in one of your vlogs, and that really stuck with me is that you, especially now, like in in where I’m at right Now, I still wear my device on my leg every day, um, but you can’t really tell that I, you know I’m wearing pants too. You won’t see it. You and I’m not wearing a I’m not using a cane, unless it’s like nighttime, or if I’m really tired, then I’ll, I’ll use my cane. It doesn’t really look like anything happened to me.

Alyssa Van Steen 1:16:45
I talk, you know, you wouldn’t know that I had lost my speech, you know, you you wouldn’t have known any of that, and you had said, fully healed, but with scars. And that’s but I don’t see the scars being and I don’t think that you meant it in this way either. But I think a lot of people think like, scars, like, it’s a like, it’s a bad thing, and I see it as a good thing. These are, these are like, we want these scars, because you’ll never forget the things that you have went through with these scars, even when you look like you’re fully healed.

Alyssa Van Steen 1:17:34
And when people say, like, when people ask, like, oh my gosh, how are you doing? Okay? And they do say that they’re like, Okay, so you’re fully healed. And I’m like, yeah, like, like, sure, because I think like you had said in one of your vlogs. I think a lot of people say like, they want to hear, they just want to hear you saying and, and that’s fine, because I know that there are certain people that, like, want to ask more questions.

Alyssa Van Steen 1:18:02
And then I will tell them, like, yeah, no, I’m not fully healed. I don’t know if it will ever happen, but like, for right now, like, this is what’s going on and, but I’m doing really good. Like, there’s probably no healing. But for the MO, for most people, I’m just, I just say, Yeah, fully healed.

Bill Gasiamis 1:18:22
Qualify a little bit what I meant by that, because you’re you’re right about what I meant is that I actually have a physical scar on my head. Everyone’s because of where my hair really, really short, like a number one. Everyone sees it all the time. And it’s not why I wear my hair a number one, but they see it. So there’s that, then there’s emotional scars that are there. And let me tell you, when I did the book launch, I’m in a room, there’s about 40 people there. I I was supposed to do a 20 minute speech. I cried about four times, and I was like, Oh my gosh, I didn’t plan for this in my speech.

Bill Gasiamis 1:19:02
It’s ruining the flow. But, you know, it’s heartwarming, and people kind of made, probably made them buy an extra book or something, I don’t know. So it was okay. So that little emotional thing, I didn’t realize it was there until I got up to do this presentation in front of friends, family, loved ones, people who came to support me, and it just came out of nowhere. So the trauma that I went through is basically has been dealt with.

Bill Gasiamis 1:19:31
But you know, there’s a little niggling bit that needs to come out every so often and say, Hey, remember me, and I’m okay. I remember you, and then there is the mental scars as well. So again, healed from them, but I had to grapple with I’m not going to be here. Maybe tomorrow. I don’t know if I’ve said the things I need to say to my family, to my friends, to my wife, to my children “Oh my gosh, I haven’t got time. I need to get all that stuff done and sorted” and then I think my healing really started to take the a turn to the next level.

Bill Gasiamis 1:20:14
Where things started to improve a lot, despite my pain, despite my numbness, despite falling over, despite not being able to work the same as I did before, when I started doing stuff for other people, helping people, I didn’t realize that at the time it was a little bit selfish. When I started this whole podcast and book thing and everything, because I wanted to, I wanted to use what I’d learned and the people that I met to help me, which was cool, right? Because I was at least advocating for myself, and at least I was leading my own recovery.

Bill Gasiamis 1:20:55
I was in charge of it somehow, right? There was other people involved, doctors, therapists, they were all involved, but I was leading the charge. But then when people reached back through the podcast, comments on the YouTube video or from the book, and said, This really helped me. I don’t know that just took everything to the next level that made my whole experience that really tough stuff that we had to go through worth going through. I don’t do that kind of stuff from normally.

Bill Gasiamis 1:21:27
That’s not what I do. I used to do all selfish stuff. It was all about me, me, me, me, me, how much money am I going to make, how much, what car I’m going to drive, and how many houses I’m going to have, and all this stuff, and now all that, all those ideas went away, they went away, they just, they fizzled. And I’m content. I have contentment, which is a gift that I’ve never had before.

Alyssa Van Steen 1:21:51
Oh my gosh, yes, that’s such a good way to describe it, like the contentment, I think because I, um, I also have a scarf, but you can’t really see it because I have hair. It likes to pop out every once in a while, but yes.

Bill Gasiamis 1:22:10
On a bad hair day.

Alyssa Van Steen 1:22:15
Yeah, I also think, like when we go, we go back to, if we can come back to what to tell people to. I also think that, like the it was the first, I think it was the Okay, so it was the September after I got home from the hospital. So I got home from the hospital in June, right in September, I had purchased about a year in advance. Well, I I purchased Cold Play tickets with my best friend, and the pandemic happened, and then they canceled their tour, and they were like, but we’ll keep the tickets, because when we come to LA, we’ll give we’ll let you have first pick, like, where you want to see.

Alyssa Van Steen 1:23:07
And so we’re like, okay, so it just happened that, right? It was probably the month before my stroke happened that we were like, We got in, we got tickets. It’s coming. It’s in September. And I was like, I’m not missing that con concert. I waited for that concert, and it was also like, it was going to be special, because it’s my friend, it’s my best friend’s favorite artist. And so I was like, I’m gonna go. It’s gonna be really challenging for me, especially because I’m wearing my, I was still wearing my brace.

Alyssa Van Steen 1:23:41
It was at the Hollywood Bowl, which, if you’re familiar, it’s just not, it’s old, it’s very it’s it’s muddy, where we had to park there. It was a lot. It was a lot. And then there was a lot of people, because it was, everyone was stoked that it was only there for like, two nights too, and they were going to go overseas. So it was, like, it was a lot people were bumping into me. It was I got home, and while I had a great time, I got home and I just collapsed and, like, bawled my eyes out, because it was just so over stimulating.

Alyssa Van Steen 1:24:21
But I’m so glad I did it, because the next concert I had was like two months later, and I was like, I’m gonna go. I’m gonna do it because it was really traumatizing, but I’m gonna do it again, and it was so much better the next time I went. So I feel like a lot of people that are sitting in their hospital beds, maybe right now, where they’ve gone through their stroke, and they don’t think that they can do things like you can do things we can do it like you might have to change your seats. You might have to whatever it is. It doesn’t have to be a concert.

Alyssa Van Steen 1:24:58
But I think like, and also for me, like, I’m such an introvert too, to like, go to a concert, it’s just already overstimulating. But then the with the stroke, it’s, like, so much more over stimulating. But I got little earplugs, and I had, like, a little safe zones, like, planned out. Like, okay, if I need, if I need to go and, like, have, like, some quieter time I’m going to go over there, like, or whatever it is. Like, I like, made little plans to make sure that I was going to be in the safest environment for me to also, like, live my life, though, like, I’m not going to say no to things.

Alyssa Van Steen 1:25:44
Yeah, and I don’t think people should say no to anything like, especially when it’s it’s really hard to it’s really hard to like, say that you’re going to get up and do all your exercises and do all of your words, scrambling and little things that I have to, you know, that I’ve done, and it’s hard to, like, get up and be like, Okay, I have to do this today. I have to do this like, there’s no there’s no negotiation, like, I need to go for a walk today because it’s going to help me, because then I’m not going to be as stiff. My spasticity is not going to be as stiff the next day, and it’s just, yeah.

Bill Gasiamis 1:26:25
I love it, there’s, I don’t know who said it, so I’m not going to be able to credit them. But on the social somewhere, I picked up this video where the guy was saying, do something for yourself today that your future self is going to thank you for and so, yeah, okay, I love that. I love doing it for my future self, because my future self really appreciates all the hard work that I did today.

Bill Gasiamis 1:26:50
And it sounds like they’re two different people, and they almost are. They almost are two different people, but we benefit together, and the hard the person who’s doing the hard stuff might really hate it, but Bill of the future is so glad that I did the hard stuff when right, I had to do it. Yeah, yeah, I love it. So you said you’re an introvert. I don’t get that. I don’t get that. Is it just a tendency where you prefer quiet time, alone time, that type of stuff.

Alyssa Van Steen 1:27:27
Yes, I prefer quiet time, alone time, yeah, but I, I also just, I think I because I also worked when I was younger. I worked at Disneyland, and so when I worked at Disneyland that I was, like, I was they, they push you to, like, get out of your shell. And I really wanted to stay working there so, and I think that kind of helped me. That was, like, a long time ago, but, and then now, like, the work, the place that I work now, very extroverts, and so I can go, go in and turn it on, but I definitely have to go to my car and take my break in in silence.

Alyssa Van Steen 1:28:12
I think also, like the for me, like the biggest things that get me on a daily, day to day to day basis, is the fatigue and the over stimulation of anything and everything, even if, like, certain lights, or even if it’s just like, oh, like a lawn mower going in the backyard, or something like, I just like, can’t There’s Certain times the day, or, like, whatever it is, and then fatigue, just, you just, you don’t know when that’s going to happen. It’s just going to happen whenever it feels like, because it’s like, sometimes you think, like, I’m going to beat the fatigue, like I can. I can do this, like I can.

Alyssa Van Steen 1:28:56
I can take a little easy here, and then I can. But it No, there’s no, I think, like a traumatic brain injury, you can’t beat the fatigue. I have to, I have to keep learning that and to say that out loud, because I know.

Bill Gasiamis 1:29:12
Beat you down. You can test it, and you can push the limits of it a little bit. But then it’s like, not even me. I’ve been at this for 13 years now. I come home sometimes at, say, 330 or 4pm and I’ve got a list of emails, stuff to do, send, and my brain’s going, you’re not getting any of that done today. Absolutely none of it. Don’t even think about it. Sit down and do nothing. Otherwise we’re not going to have a good day tomorrow, and then the fatigue wins. But I’ve come to terms with it.

Bill Gasiamis 1:29:47
I think introversion is actually a really good skill, because when you’re comfortable being on your life, on your own and with yourself and. Having quiet time while you’ve practiced it for so many years, you know how to do that really well and switch it on, whereas I’m not like that. I was always out and about with somebody doing something. I’m a total extrovert. So then when it came to alone time and me time, it felt weird. It felt weird. Ah, okay, I’m alone and all right, what now this is boring, and I can’t occupy myself and I can’t stimulate myself.

Bill Gasiamis 1:30:27
I’ve gotta get out and about, and that’s where I struggled. I struggled with the fact that even in hospital, after the the first bleed, my doctors and nurses were looking for me because I was never in my hospital bed. I was never in the bed. And they’re like, You are not well. There is a blood vessel bleeding in your brain. You have to be in your bed. And I’m like, No, everything’s fine. I would meet up with people at the cafe. We would chat.

Bill Gasiamis 1:30:56
They would send search parties down to the cafe to look at look, look for me so they can take me back up to do blood tests, scans, all that kind of stuff. So I I see introversion in this scenario as like being a skill that gives you guys the opportunity to really give you, give yourself that time of No, I don’t want people around, I don’t want noises. Just wanted to be me quiet place. I always felt like I wasn’t productive enough.

Alyssa Van Steen 1:31:29
No, but that’s so true. But then I will say, like, although like, I’m also the type of person that, like, I can’t just sit still, like, I need to be doing something like, I and I think that’s why I like, I like gardening, I like walking, I like, like, like, going out with my dog. Like, I I’m introverted, but I’m also, like, if I’m sitting and watching like a movie or something, I’m working on my hand. Like, I’m working with my hands. I’m I’m cutting paper, I’m doing like, art or something, because I can’t just sit still.

Bill Gasiamis 1:32:04
You’re occupied that.

Alyssa Van Steen 1:32:06
Yeah, I need to be occupied. But that also, in turn, like, doesn’t really help me when I’m, like, supposed to be resting, and I’m like, I’m like, already thinking, I’m like, Okay, I have to do this. Okay, then I’ll do okay. I’ll do that. When I’m rest, I’m resting, and, you know, it’s like, I’m trying to lay in bed, but I’m already, like, making lists of all the things that I can do this week and like, and so it probably doesn’t really help that I’m like, not great at, like, Resting, resting, but yes, I can be by myself alone, no problem.

Bill Gasiamis 1:32:42
I love it. Well, hey, I really appreciate reaching out. Thank you for sharing your story. Is a wonderful story of overcoming and recovery and moving forward, and thanks for following my vlogs and, yeah, supporting me the way that you have. It’s brilliant. And I look forward to hearing how things evolve from here and how life improves further.

Alyssa Van Steen 1:33:11
I am too. I do want to like Leave, leave. I guess the audience with this, when I got home from the hospital, it was really hard for me to find anyone like me that have gone through a similar thing, um, any type of stroke, or at least, you know, any kind of stroke or I would love to find, I would have loved to find, like, a hemorrhagic stroke person that was like posting, like, day in the life of how, like, you know, healing from I couldn’t find it. It was really hard. And, and then when I, if I do find it, they’re not in my area, so I don’t have people that around me that have that similar interest.

Alyssa Van Steen 1:34:13
But I found it online when I started posting videos on myself, and I got so many messages over like, I think it was like one or two episodes, or episodes of posts on Tiktok, and I had so many people like, say, like, oh my god, I’m a hemorrhagic stroke survivor as well. Like, blah, blah, blah, or, you know, or whatever, even ischemic stroke or and it was like, so crazy, the amount of people that reached out to me, and they were like, Oh, thank you for posting this. This is so cool. Like, I’m so I’m so surprised you can do this, or, like, whatever it is. And I was like, Okay, this is cool.

Alyssa Van Steen 1:34:54
And I had this, like, similar thing that you kind of had, where it was like, Oh, I. Wow, I really love this, but it’s also like, helping me as well. Like, I’m, it’s like, very selfish, but like, it is true. Like, it makes me feel so good when I’m like, I can’t, I didn’t find it for myself, but I’m going to be it for someone else. And I think that, like, there’s, there’s so many people that have strokes younger and younger right now, and they’ve been, they’ve told me this in the hospital. They were like, we’re seeing more and more like younger people with strokes. And it was really hard for me to find people.

Alyssa Van Steen 1:35:39
So I was like, I’m gonna, I’m gonna break that wall, or at least, like, maybe, maybe I wasn’t looking hard enough, or whatever. But, you know, it’s like, you need it, because I think, like, your podcast is so it’s it. There’s so many episodes of people.

Bill Gasiamis 1:35:58
Yeah, nearly 350.

Alyssa Van Steen 1:36:01
Right? It’s crazy, like, and when I found out, you, I found it, you’re, I was like, Oh my gosh, look at all these people have had different types of stroke. I was like, and it’s so it’s so lovely to have someone different podcasts, but they all say the same type of things that I went through, and it’s something that’s like, Oh my gosh. It’s very meaningful. It really is. So I also, I also have, like, this little quote that I have been telling myself that I kind of like remind myself every day that the toughest gems are the hardest to mine.

Alyssa Van Steen 1:36:47
And I really feel like when you’re when you go through any type of stroke, I feel like you feel that, that that you feel that like the whatever it is that you had to get back to to give you, like a some a little semblance of your regular life, like it’s really hard, but it’s so rewarding. Um, yeah, and I just, I appreciate I appreciate you, and I appreciate the things that you’re doing. And I can’t wait to listen to more podcasts.

Bill Gasiamis 1:37:30
Thank you. I’m gonna, I’m vlogged, yeah. Thank you so much. I’m definitely be following your journey on Tiktok. We’re going to have the show notes. Anyone who wants to connect with you will be able to go and connect with your community. Is so important I was missing that I created the same thing. And that’s the part of it like that’s what our responsibility is. You need to create your own community the way that you’re comfortable doing, in the format that you want to do it.

Bill Gasiamis 1:37:57
And then people will will be attracted to that, because it’s you, because you’re unique in the way that you tell your story. Even though we are stroke survivors and we’ve had similar things, we’re totally different. There’s only thing we have in common, is stroke but also, then we also have the understanding in common of each other. It’s like, okay, and that is, that’s what you can you imagine the amount of people that I’ve spoken to, the different political views, the different ideological views, and all that kind of stuff. I’ve never spoken about that at all.

Bill Gasiamis 1:38:33
I’m not interested any of that. I’m just interested in people’s stroke journeys, what happened to them, their recovery, how they’re fighting back, how they’re overcoming what they’re learning along the way, because they all help me. And every episode I get something out of, every person I interview I get something out of, and I am glad that there’s more people talking about it, because I can’t be the only voice. Like there’s just not, it’s not, it’s not diverse enough for me to be the only guy talking about strike.

Bill Gasiamis 1:39:06
I can’t represent women. I can’t represent people from different socio economic backgrounds. I can only represent me the way that I experienced it, and that’s what I love. I’ve I’m even having meetings with people now online for half an hour who have reached out and said, Oh, how do I start a podcast? Or what can I do? I try to fit in. If somebody asks me, you know, how do I do it? Because I want to know. I want to make sure that none of us, former stroke survivors, and unfortunately, stroke survivors to come are without information.

Bill Gasiamis 1:39:42
And I don’t want them to go through all the tough stuff that we all went through, that we can avoid. If we can avoid some of the tough stuff on their journey, if we can help with that, then I think that’s a great thing. The rest we can make space for them to discover and overcome on their own. You know? So. Um, yeah, thanks again. I really appreciate it. This has been an amazing chat. We’ve been going for more than an hour and a half, just gone like that, but briliiant.

Alyssa Van Steen 1:40:11
Sorry, but thank you very much. This is it’s been I was so looking forward to this. I was so looking forward to this. So thank you. I’m I’m so grateful for you.

Bill Gasiamis 1:40:25
Well, that’s it for another episode of the recovery after stroke podcast, some stories don’t resolve neatly. They keep unfolding, and Elisa’s is one of them. She’s back at work, she’s driving, she’s walking with support, but she’s also still exhausted, still navigating deficits, still waking up some days needing more time to function than the world expects, and yet she’s showing up for herself, for others and now for this community. If you’re in a season where progress feels invisible, let Alyssa story be proof that healing isn’t about going back.

Bill Gasiamis 1:41:01
It’s about becoming someone new, someone stronger, softer, more aware of what really matters. Thanks again to biones for supporting this episode. For anyone listening who might be dealing with foot drop, there’s actually a way to try the bio nest device in a free one hour trial, just to see if it’s the right fit for you, binance offers trial days at different locations across the United States. Just call to schedule a time we’ll catch you in the next episode.

Intro 1:41:33
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 1:42:02
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 1:42:27
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Intro 1:42:54
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The post The Stroke That Took Everything – And What Came Back appeared first on Recovery After Stroke.

A brain bleed stroke — also called a hemorrhagic stroke — can change your life in an instant.
One moment you’re functioning normally, the next you’re fighting to stay alive.

But while the physical trauma is visible, the emotional and psychological impact runs just as deep, and often goes unspoken.

In this article, we’ll explore what stroke survivors often discover in the wake of such a devastating event — and how healing doesn’t always look like recovery. Sometimes, it looks like rediscovering who you are.

A brain bleed stroke occurs when a blood vessel ruptures and bleeds into the brain. This can cause sudden loss of consciousness, neurological deficits, or even death if not treated urgently.

It’s often caused by:

• High blood pressure
• Aneurysms
• Arteriovenous malformations (AVMs)
• Cavernous malformations
• Head trauma

Recovery depends on many factors: the location of the bleed, how quickly treatment is provided, and the support systems in place afterward.

But even after the medical emergency ends, the journey is far from over.

For many survivors, the road ahead includes:

• Right or left side weakness
• Paralysis or limited mobility
• Vision loss (often tunnel vision or loss of peripheral vision)
• Fine motor skill impairment

• Memory loss
• Brain fog and confusion
• Loss of speech or difficulty forming sentences
• Emotional lability, frustration, or depression

• Loss of independence
• Shifts in relationships and roles
• A grieving process for the “old self”

Recovery is rarely linear. But survivors often speak of unexpected insights that emerge through the struggle:

Being vulnerable during recovery often deepens relationships.
Survivors frequently report a renewed closeness with family and caregivers.

When survival isn’t guaranteed, every moment becomes sacred.
Small wins — standing, eating, smiling — take on profound meaning.

A stroke strips away distractions.
It forces stillness.
Many survivors describe it as the first time they were truly present in their own lives.

Whether you’re weeks out of the hospital or years into recovery…

• You are not broken.
• You are rebuilding.
• There’s no timeline for healing.

And you don’t have to do this alone.

A brain bleed stroke can destroy plans, routines, and even parts of your body. But it doesn’t have to destroy your future.

Presence. Connection. Growth.
These are things that can emerge because of your stroke, not just in spite of it.

Take this moment to breathe.
To reflect.
And to remember: recovery isn’t just possible — it’s already happening, one moment at a time.

Jen’s brain bleed stroke nearly ended her life. This is how she and her mother turned trauma into connection, healing, and post-stroke growth.

Instagram
The Book: In The Face of Catastrophe
Support The Recovery After Stroke on Patreon

Highlights:

00:00 Introduction
01:43 The Beginning of Jen’s Stroke Recovery Journey
08:32 The Initial Emergency Room Treatment
12:35 The Cavernous Malformation
19:58 Constantly In and Out of Consciousness
23:06 Jen’s Initial Deficits
29:21 Difficulties of having Cognitive Issues
32:10 Communicating After a Stroke
43:19 Writing the book “In the Face of Catastrophe”
50:54 Life Appreciation After a Stroke
56:51 The Power of Family and Writing

Transcript:

Bill Gasiamis 0:00
Hi everyone. Before we begin today, I want to say thank you to everyone who’s left a comment, written a review, supported the show on Patreon, clicked the YouTube super thanks button, brought a copy of my book, or just chose not to skip the ads.

Bill Gasiamis 0:16
You’re the reason this podcast reaches people in their hospital bed, sometimes only days after they’ve experienced a stroke, you’re helping them feel less alone, and you’re helping me keep this going. Today’s episode is one of those conversation that gets under your skin in the best way.

Bill Gasiamis 0:35
Jen Goldman was just days away from her 31st birthday when a sudden brain bleed. Stroke changed everything. She was healthy, vibrant and thriving, until the moment her brain hemorrhaged at work, unconscious, unresponsive, rushed to surgery. Her mother, Karen Karen Hersh Lifer, arrived to find her daughter on the brink, and what followed was a long, uncertain road through ICU craniotomy, months without memory and years of rehabilitation.

Bill Gasiamis 1:09
But it’s also a story about connection, gratitude, and how even in trauma, there can be gifts together. Jen and Karen wrote a book in the face of catastrophe, about what it means to hold on to each other when everything else is falling apart. If you’re tuning in from a hospital bed or from the quiet of a tough recovery day, this episode is for you. Let’s get into it. Karen Hersh Lifer and Jen Goldman, welcome to the podcast.

Jen And Karen 1:41
Thank you.

Bill Gasiamis 1:43
Thank you for your patience in waiting for me. We are 20 minutes late because I had computer problems. And these things happen sometimes, and in the scheme of things, computer problems are not a big deal. Jen, tell me a little bit about what happened to you.

Jen Goldman 2:00
I was 30 years old at the time, and out of the blue. I have been in perfect health. I suffered a massive brain leaving my left envelope. I was turning 31 in three days, with two days before 31st birthday, and it was completely out of the blue. I’ve been in perfect health. I had been running, walking, in perfect physical shape, eating, healthy, exercising, just doing all the things that I did, that I was doing in my life.

Jen Goldman 2:37
I run a business, I had essential oils and an aromatherapy company called Sensual Rose. I was very spiritual and into positive psychology and practice meditation, visualization, and I love positive psychology. And, yeah, this just struck me out of the blue, completely out of the blue. And it really was devastating my whole life.

Bill Gasiamis 3:02
Where were you at the time?

Jen Goldman 3:05
I was at work, my mom’s store.

Bill Gasiamis 3:07
Was mom there?

Jen Goldman 3:09
Yeah, yes, she came but off work that day.

Karen Hersh Lifer 3:14
I actually got there. The general manager called we have a a business and about 10-12, minutes from where we live. And so I got a call that morning at 9:15 the general manager saying there’s something very wrong with Jen. She’s not comprehending. She’s walking weird. She’s banging into things. She’s speaking in gibberish.

Karen Hersh Lifer 3:46
And so it just seemed to me that this what, what is going on here? And my husband, Jen’s Father, is an he’s board certified in emergency medicine. He’s a physician. He was off that day, and he said, You know what? This sounds really weird. And he went over to check in. And before he arrived, I got another call from the general manager who and she was with Jen, and it was during that call that Jen was having the bleed. You could actually hear it, and hear her.

Bill Gasiamis 4:31
Say that again, you could hear the bleed?

Karen Hersh Lifer 4:35
Yes, when the bleed happened, when the vessel in her brain burst, blood rushed into this closed surface her brain, and it was an agonizing, agonizing, terrifying event, and she was screaming in agony.

Jen Goldman 5:04
At that point. I had been unconscious, of course.

Bill Gasiamis 5:08
You have been conscious for a little while beforehand. And were you in and out of consciousness?

Jen Goldman 5:13
No, I was completely unconscious at the time.

Karen Hersh Lifer 5:19
When she had the bleed, she became unconscious and remained unconscious for a significant period of time thereafter. You know, turned out where I work is about 10 minutes from a major hospital Trauma Center, and it turned out that they have a really excellent neurosurgery department, which I didn’t really know about, because I had really no reason to know about neurosurgery, thankfully.

Karen Hersh Lifer 5:57
And so we got over there, and, you know, initially, Jen was not supposed to survive, she was not supposed to live, and actually was able to survive. And was in the ICU, there for three weeks, on the floor there for a week, and then went over to acute inpatient rehab for seven weeks. And from the day she got home, she’s been working on her recovery. It’s almost four years.

Bill Gasiamis 6:36
So did you arrive there Karen? Did you see your daughter in that unconscious state?

Karen Hersh Lifer 6:50
I did. I got there and the other thing that is sort of important to know is that our business is a family, run and owned business. We have 150 employees, all of whom know us very intimately. Knew Jen very intimately. Some of them have watched Jen grow up and so when I got to the store, because it’s a retail store, it was extraordinary, people were crying, and I was just really, really emotional.

Karen Hersh Lifer 7:37
And when I walked in the ambulance, the EMS were taking her out in a stretcher, and she looked like she had left her body. It was just, Oh, my God. She looked dead. I mean, it was just like she was not there. And I didn’t know it at the time, but my husband told me afterwards that she actually was very close to death because she was her posture was decorticate, which means that her legs were turning in, her feet were turning in, and her arms were turning in, and that happens sort of right before your brain herniates and drops out of your skull.

Karen Hersh Lifer 8:32
And so, yeah, so they got her into the ambulance. They got her to the hospital. I mean, I knew things were bad when they wouldn’t permit my husband or I to stay in the ambulance with her and got to the hospital. And for the next three weeks, for as long as she was in the ICU, we were just not certain if she was going to live or not.

Karen Hersh Lifer 9:03
I mean, initially, the neurosurgeon came to us and said, I think there’s multiple bleeds in her brain, and if that’s the case, I can’t save her. I’m going to go in and do an angiography. Now it should be 45 minutes, and we just sat there. It was just like impossible to process. And in about 10 minutes, he comes bounding back in to the waiting room. And, you know, I thought she’s gone, she’s died. And he comes in and he said, so I have good news, and maybe not so good news.

Bill Gasiamis 9:52
Wow let’s take a moment to breathe. You’ve just heard Jen’s story of collapsing at work, slipping into a coma and waking up months later without speech memory or control on her right side. If you’re in the early stages of recovery, still learning how to move, to speak, to be again, know that you’re not broken. You’re rebuilding. And to everyone who supports this podcast, thank you again.

Bill Gasiamis 10:17
Your comments and reviews, your super thanks, and your Patreon pledges, your purchase of my book, even watching without skipping the ads helps this reach someone else to find out more about supporting the show on Patreon, go to patreon.com/recoveryafterstroke, now back to Jen and Karen and the healing that came not just through rehab, but through presence, writing and love.

Karen Hersh Lifer 10:46
The good news is it’s not what I thought it was. It’s not multiple bleeds. I think what it is is a cavernous malformation, and what that is is like a little berry, if you will, a raspberry that was sitting on an artery in her brain, and that, for whatever reason, burst, and it ruptured the artery.

Karen Hersh Lifer 11:17
So he said, So, I think that’s what it is. The problem is that if we don’t get the blood out soon, she’s not going to live, and if she rebleeds, she’s not going to live. And so what then became, what that then turned into was a rush, a race to try to get the blood out of Jen’s brain so that her skull actually so that the neurosurgeon could do the procedure. Yeah.

Bill Gasiamis 11:58
Wow, Jen, before the actual unconscious state, any were there any signs? Did you have any idea that there was stuff going wrong? Did you feel a weird headache, or in the days leading up to it? Anything at all?

Jen Goldman 12:15
No, because I’d had headaches every day for since I was like little so it was very common for me to, like have that feeling. But other than that, there’s nothing that could indicate to me that this was going to happen, it was completely out of the blue, I was in perfect health.

Karen Hersh Lifer 12:35
And what’s sort of interesting or scary, or whatever the adjective is, if so, I’ve always had migraines. My mom’s had, has had migraines. So headaches are, I mean, you do a scan, maybe, but you know, even if they had done a scan and they found this cavernous malformation.

Karen Hersh Lifer 13:04
A cavernous malformation in and of itself, is not so uncommon. And if it’s not presenting you with any difficulties, in many cases, you watch it. And so even if we knew that she had this, we probably wouldn’t have done anything about it so, and it’s very rare for the cavernous malformation to burst. That was an unusual event.

Bill Gasiamis 13:39
They are really benign. Most of the time, they just sit there, similar to what happened to me, an arteriovenous malformation. They just sit there. They don’t do anything. And then, very commonly, you hear about them bursting at around middle age, between 30 and 45 for some reason. I’m not sure why. And even if they had found mine, they probably wouldn’t have suggested anything, because it was benign at the time.

Bill Gasiamis 14:09
It wasn’t doing anything, and it was probably very deeply into the brain and in the position that it was, it was hard to get to and hard to extract, so they kind of left it there. So, so Jen, you’re everything’s fine, and then it’s not, and then you’re going to hospital. Do you recall coming around, waking up? Do you recall any of that part of the hospitalization?

Jen Goldman 14:39
My memory is really like, I don’t really remember actually coming back to myself fully. It’s very hazy. When I got my memory back, there was like a moment where I was like, Oh, I remember this now. It was very like, it was hazy. So like, there was like. Okay, um, how do I not explain it honestly.

Bill Gasiamis 15:09
Yeah, I get it. It’s difficult to explain because you’re in another realm. I imagine it’s like the only way to describe it. You’re in a completely different experiencing things in a completely different way.

Karen Hersh Lifer 15:22
You know, it was interesting to me, because when Jen was in rehab, and so she got to rehab exactly 30 days after her her stroke. And so, you know, I would sort of try to inquire, to sort of see where she was at, you know, cognitively, you know, because Jen used to be a motivational speaker. I mean, Jen was an entrepreneur. She started a company in her college dorm, you know, she traveled all over the country.

Karen Hersh Lifer 16:04
She would go to workshops. She was certified in three types of yoga and Reiki. And did you know, meditation, and I mean, she was very active and spiritual, unconscious, right? She was very much engaged in the world around her. Yeah, nature loved, you know, loves nature, loves the beach, loves, you know, very adventurous, ethereal and and, you know, I used to always call her a badass, because she would just get in the car and go.

Karen Hersh Lifer 16:41
We have a place in Colorado, and during COVID, Jen actually moved home because she had had a breakup with a boyfriend, and so we’re all living at home, and Jen is, like, very ornery and difficult because she’s unhappy about this breakup. And so my husband, David said, listen, you’ve got two choices. There’s two things. One of two things is going to happen, either I am going to move to Colorado or you’re going to Colorado and you’re going to live there. And so Jen.

Jen Goldman 17:21
I packed up myself, my car.

Karen Hersh Lifer 17:23
And drove by herself, for 30 hours to Colorado. Which is two thirds of the way across this, you know, the country, without a care in the world, without a care. And, you know, Jen was, like, super independent and really creative, like, I used to call her a spider. I called her a lady, arachnida, because when she would weave, she was weaving her web all the time.

Karen Hersh Lifer 18:02
And if someone would come along and and knock get out of the park, she wouldn’t come to me and say, oh, whoa, it’s me. She would, without a peep, just figure out a way to reweave it. And it was just this incredible determination and energy and focus and an absence of fear.

Jen Goldman 18:31
I was fearless. That’s good way to describe me.

Karen Hersh Lifer 18:36
And so for me, I was absolutely terrified about losing that Gen, and losing her wit, you know, and her snarky sense of humor. And so it was absolutely terrifying. And so I would basically try to, sort of, you know, engage, to figure out a little bit about where things were. And, you know, I asked her, I said, Do you so I brought in calendars, we had photos, trying to see what she could connect with.

Karen Hersh Lifer 19:17
And there was a the employees that work had put together a board where they all put their photos and and I asked Jen, you know, do you remember any of this? And she said, Well, that was 10 years ago. I said, No, that was, that was two weeks ago, 30 days ago. That was 30 days ago. And she was like, What do you mean? Like, her sense of time, everything.

Bill Gasiamis 19:49
I was going to ask Karen, how long after hospitalization, did Jen wake up?

Karen Hersh Lifer 19:58
Well, I mean, she was in and out of consciousness, and then, so it was definitely a good couple of, like, 10 days. But she, what would happen would be, she would storm. Okay, I don’t know if you ever stormed.

Bill Gasiamis 20:20
Tell me about that. What is a storm?

Karen Hersh Lifer 20:22
So storming is when your autonomic nervous system, which you’ve lost, okay, goes crazy. And so what happens is when you storm, and after a stroke, it’s pretty common.

Karen Hersh Lifer 20:41
When you storm, your blood pressure drops, you get a fever, you shiver, and your cognition drops to a lower level of consciousness. And storming, there’s another word for it, a medical term, but it we you know, it’s called storming, and during the period where she was in the ICU, she would storm daily.

Karen Hersh Lifer 21:07
And the problem with storming at you know, when you’re in the ICU and you storm, it’s one thing, because you’re hooked up to so many different machines and monitors that they will know it’s not an infection. It’s not a heart attack, okay, it’s just a storm.

Karen Hersh Lifer 21:29
But when she actually came out of the ICU and went to the neuro floor at that hospital, and when she was subsequently at the at rehab. They every time she would storm, they would have to rule out all of these other potential causes of storm, and every one of them is really potentially problematic.

Karen Hersh Lifer 22:00
You know, infection, heart issue, and so her cognition would rise and fall. And it wasn’t really until she got home three months later. Where she was more consistently awake. Uptunded. That’s how she was in the hospital, constantly.

Bill Gasiamis 22:35
So the time frame between hospitalization and then coming into consciousness. How long did that take?

Jen Goldman 22:47
Three months at least. By the way, when I came back into consciousness, it was not like being aware of anything at all. I still had a lot of work to do because I was not conscious of, like, what I was conscious of?

Bill Gasiamis 23:06
What were your deficits? What did you wake up with that you had to overcome or you had to work on rehabilitating?

Jen Goldman 23:14
My whole right side, I currently have no peripheral vision at all.

Bill Gasiamis 23:20
You currently still have no peripheral vision?

Karen Hersh Lifer 23:23
Her vision is limited.

Bill Gasiamis 23:29
Your whole right side is, how do you how would you describe your whole right side?

Jen Goldman 23:35
It’s impacted. It’s been impacted. I use a walker, and my right arm is a work in progress. It’s so tight, though.

Karen Hersh Lifer 23:47
Spasticity of the muscles?

Jen Goldman 23:49
Yes, and tone. No pain thankfully, I’m so lucky that I don’t have any pain.

Bill Gasiamis 23:59
Sensory neurons. What about the skin? Does it feel like it’s itchy, burning, or anything like that?

Jen Goldman 24:06
Thank god no.

Bill Gasiamis 24:08
Okay, so it’s kind of like it’s not activated to the fullest extent the way that your other side was, or it was previously your your right side.

Jen Goldman 24:22
The sensation is dulled on the right side.

Bill Gasiamis 24:26
Does it kind of feel numb?

Jen Goldman 24:29
Not numb, but it’s much harder to like, to feel it.

Bill Gasiamis 24:33
Yeah, to get like feedback to the brain.

Jen Goldman 24:37
Like, I’m much more sensitive on my left side and right side, not so much so sensitive anymore.

Bill Gasiamis 24:41
Yeah, I’m wondering, guys, what was the procedure? Was there a procedure that was used to deal with the cavernous malformation?

Karen Hersh Lifer 24:55
So they finally were able to get the blood out. Which was an odyssey. They inserted three or four different drains. The drains kept getting clogged, um, her intracranial pressure was going up, and if it hits 20, okay, that I would come to think of that as brain meltdown, okay, because there’s just too much pressure, and her, her good brain cells were being destroyed. And so there were days where I would sit in her ICU room, staring at the the intercranial pressure monitor, willing it down. And it was just, it was unbelievable. So, so basically, what was I saying?

Bill Gasiamis 25:52
About how they dealt with it.

Karen Hersh Lifer 25:55
Yes, so what they then did was they got it down, and the neurosurgeon went in, and in order to also there were drains, they also did a craniectomy. Yeah, they had to remove a part of her skull to give her the brain, and so between, that’s really what ended the bleeding and enabled them to get all the blood out. And then what they did was he went in and did a procedure where he removed the cavernous malformation, which was enmeshed with some, you know, some clots in, you know, removed that, and then restored her skull. And so that happened about 10-12, days after.

Bill Gasiamis 26:57
Initial visit of the to the hospital. Okay. And then rehabilitation started. I imagine after that, what was it like to experience your body not working the way that it was before?

Jen Goldman 27:12
I’m still in rehab to this day, very frustrating for me. I used to be so athletic. I used to ski and go to the gym every day. I was very active physically, and now I have to, like, work on that, and I can’t express my body and I can’t activate it if I want to, and it’s very frustrating because I can’t just, like, go on a run, or, like, go to the gym and workout.

Karen Hersh Lifer 27:38
Or even go into the kitchen and make yourself some tea. You know it’s, I mean, the one area where Jen is almost completely back is the area of cognition. I mean, initially things were so jumbled in her head. I mean, she didn’t how to play tic tac toe. She did not know what a comb or brush was or a toothbrush, what to do with them.

Karen Hersh Lifer 28:09
She had like, I mean, she recognized certain things, and that was sort of weird as to what she did remember and what she didn’t remember, but there were, like, glaring gaps in her memory, some of which, much of which returned once we would talk about something and but like, how she met her boyfriend, where she met her boyfriend.

Karen Hersh Lifer 28:38
The fact that Mikey was her boyfriend, that they were living together, you know, and these things were absolutely terrifying, and, you know, just and she, Jen, couldn’t speak. She didn’t speak for a while, and she, she was intubated, she was intubated, and then she had a trach.

Bill Gasiamis 29:10
And that was because they were afraid of your swallowing or something was going to go wrong in the throat, and therefore they want to keep that airway clear.

Karen Hersh Lifer 29:21
Yeah. And so Jen had no working memory, and so she could not tell a sense, tell a story. She couldn’t really put a sentence together. So for example, whereas in the past, if you said to her, hey, you know, what do you like about the woods? You know, she’d go off on, you know, the five senses, the smell, the you know, how it makes her feel the connection with nature.

Karen Hersh Lifer 29:55
You know, she would go on and on. Whereas, when. At immediately after her stroke, when she was home, I’d say, How do you feel about the woods? And she’d say, I like them. End of conversation, nice. They’re nice. Whereas then I would say, tell me why, and it would be a one word answer, and eventually, over time, it became, I like them because they make me feel good, because I love nature, because it’s a connection.

Karen Hersh Lifer 30:34
Um, so, but all of that has taken tremendous amount of work, yeah, and so. But what started to happen, what I think, facilitated it and accelerated it, was that, you know, basically when Jen came back from the hospital, she wanted to know what was going on, what had happened to her, and I had taken notes in the hospital, just because there was so much that went on that needed to be processed.

Karen Hersh Lifer 31:15
And I knew it, it had to be processed at some point. And so I said, Well, I have notes. And she said, I want to understand, because everyone here is so traumatized. And so I started to go through the notes, and some of them, I said, you know, maybe I’ll just, you know, edit this here. This is, this is tough. This. I don’t know if, if we and Jenna said, No, I want to know everything.

Karen Hersh Lifer 31:44
And as we started to read, she said, I want to write a book with you about this, and we’re going to call it the gift, because this stroke has given me the gift of time with you and with the family that I didn’t even know I needed. And we wrote the book.

Bill Gasiamis 32:10
Yeah, we’ll talk about the book in a minute. I want to try and get a sense from Jen what it was like to experience trying to communicate with people who are trying to help you get through all that stuff. And A, you’ve got a trach, and B, you’ve experienced a stroke. What was that whole experience like?

Jen Goldman 32:35
It was so frustrating. Honestly, it was so frustrating to be able to express myself, to be able to get the words out. I’m telling you know what the words were. It’s like have that gap that cognition was really frustrating for me, because I’ve been so intelligent before, and I want to get back to that place. I want to be smart again, obviously. And I felt really stupid, and that was really frustrating to me to feel that way.

Bill Gasiamis 33:04
You felt stupid because your brain wasn’t working, probably not because you lost your intelligence.

Karen Hersh Lifer 33:15
She couldn’t access her intelligence.

Karen Hersh Lifer 33:18
Yeah.

Jen Goldman 33:19
I’m I’m not sure what I thought. Honestly, I felt stupid. That’s how I felt. It was so frustrating to not be able to access what I wanted to say and to access the thoughts that I want to think and to have the depth of the thoughts that I want to think.

Bill Gasiamis 33:37
Now with your voice, your voice seems a little bit soft, or is it different than what it was before?

Jen Goldman 33:47
Yes, much different. I think it is different. Yeah, I don’t know if it’s much different, but it’s definitely different.

Karen Hersh Lifer 33:54
And it’s different.

Bill Gasiamis 33:58
How difficult was it to regain your voice and to start talking again? Because I know the the trach in for a long time does cause interference with the vocal cords. What was it like to start talking, and was that a difficult experience? Was that draining, physically?

Jen Goldman 34:17
Yes, it’s still difficult. Honestly, you hear my voice now you just said it’s low, it’s difficult all the time. It’s much better than it was, but it’s still a work in progress.

Bill Gasiamis 34:31
And do you still experience fatigue, the general kind of neurological fatigue that comes after stroke, where people describe and is that with you as much as it was?

Jen Goldman 34:49
Not that, not as much it was, but still there definitely,

Bill Gasiamis 34:54
So you have good days and you have bad days.

Jen Goldman 34:57
Yeah, definitely.

Bill Gasiamis 34:59
And are those bad days sort of starting to get shorter and shorter? Have you become more resilient to the fatigue as time has moved?

Jen Goldman 35:11
I think, yeah. I have definitely, I think so.

Bill Gasiamis 35:15
So your mum has taken notes. She’s diarised this event, and she’s reading back that stuff to you. What? What’s it like hearing that information back from her? How do you How are you taking it?

Jen Goldman 35:31
I was so disturbed by what my family had experienced, and the fact they were so traumatized was really upsetting for me. I could not understand how they’ve been so traumatized, and I wanted to turn it into a book, and so we did.

Bill Gasiamis 35:51
But she’s reading it back to you in stages, like, in the whole savings, in sessions, like, how are you receiving it? How does it make you feel when you hear that they’ve been traumatized. How are you responding?

Jen Goldman 36:04
I was very upset. I was crying. I couldn’t believe what I was hearing. It was so painful to me to be able to hear that. I also, like, didn’t really believe it, like, I didn’t really it was so like, hard for me to comprehend that had actually been real. And I had been like conscious for that understand that that had happened, and I had experienced that, and that they had experienced it all.

Bill Gasiamis 36:32
And it’s you, Mom and Dad, your sister is this, others in the family, in the direct family?

Jen Goldman 36:41
My boyfriend at the time Mikey.

Bill Gasiamis 36:48
And Karen, are you at just a general note taker? Is it something that you did to help you process what was going on, what was the purpose of this?

Karen Hersh Lifer 37:04
So, I mean, I’ve always, I love to write. I’m not leaving my day job, but I actually did write a book before this. And so for me, writing helps me process. And I knew that this was so traumatic I was going to have to figure out what, what happened here. And so I just, you know, just taking notes from of all sorts of different things, sitting in the waiting room and hearing there’s like a family room, and hearing the remarks of other families dealing with this crisis.

Karen Hersh Lifer 38:04
And you know one woman, you know a mom with her kids and saying, oh my god, who’s going to run the business? And so it was the kinds of issues that people around us were dealing with were, they were just so profound and so things like that. Here I am, and I’m dealing with my own issues, and yet it’s like almost being in like some kind of, like holy space, like taking in this information and being respectful of what each of the families, you know, was was going through, so stuff like that.

Karen Hersh Lifer 38:53
Or, you know, one day we come in, and every night when Jen was in the ICU, was a bad night, because we didn’t know if she was going to survive the night. And we come in in the morning, and the the head resident, the head attending of the ICU, said we had some excitement last night. And I, I said, Oh, wow, something good happened.

Karen Hersh Lifer 39:22
And he all of a sudden, looked, he had this horrific look crossed his face, and he said, excitement is never good in ICU, but, you know, but So again, going to how doctors, you know, interact. How do they navigate these types of medical issues where a 31 year old could be dead? You know, they’re like, she’s hanging on by a thread.

Bill Gasiamis 39:53
It’s exciting to them, but it’s probably not the type of information they need to pass on to the family. They could maybe keep to themselves.

Karen Hersh Lifer 40:01
So there were things like that in the waiting room. You know? There was the sign that basically said, miracles happen every day. And I looked at that sign and it terrified me, because it’s like, is that where we are at we need a miracle. And it was just like, you know, I mean, the sign is benign, okay, but when you’re in that space.

Bill Gasiamis 40:32
You create a context for it. And then it could mean whatever your experience is. At that time, we were in a waiting room a few months ago last year when my father in law was passed away. He was in an induced COVID For seven days, and then we’re in the we know that he’s going to go and we are there with him every day, and in that family room, it’s the same thing for every other family that’s in there.

Bill Gasiamis 41:05
And that was a really strange experience to be in another room with whole bunch of strangers who are waiting for their loved one in the next bed, or they’ll bed down the thing to to pass, and the interactions we were having about stuff, and it’s so strange. And everyone’s trying to go about business as normal or usual, or some kind of trying to kind of get through it. And then there’s a guy next door, in every bed, just on nearly on the way out. It’s so weird.

Karen Hersh Lifer 41:43
It’s sort of like this tension between, like, the irregularity, the, you know, the act that some of the process that somebody near you is dying and their families near you, but at the same time, what are we going to have to eat from the dining room downstairs, which is like the 10th night we’ve been eating from the dining room. It’s like, Oh my God. And so it’s like, in one moment, you know you’re dealing with this realm of issues. And you’re not alone. The people around you are dealing with this realm of issues.

Bill Gasiamis 42:30
And the mundane at the same time.

Karen Hersh Lifer 42:33
Yeah. And it’s like, how do you deal with it?

Bill Gasiamis 42:41
I don’t know how you deal with it. It’s a weird thing. Doctors are pretty cool for being able to deal with it on a regular basis. So you guys then decided that you’re going to tell the story in a broader scale, and you want you decided that you’re going to write a book. By any chance. Do you have a copy of the book there?

Karen Hersh Lifer 42:58
Yeah, let me grab it.

Bill Gasiamis 43:01
I’d love to have a quick look at it. I’ve got the PDF here, and I’m looking at, I’m looking at the cover. It’s one of the most prettiest covers I’ve ever seen on a book.

Jen Goldman 43:12
Thank you. We created it ourselves. We designed it.

Bill Gasiamis 43:19
It’s beautiful. So tell me a little bit about the book. What it’s intent? What does it tell?

Jen Goldman 43:27
It basically tells my stroke and how we came together as a family, to navigate it, and what we learned along the way, like resilience, and how to have hope, and how to be present, and the power of family and community, and how to adapt to change, and the power of positivity.

Bill Gasiamis 43:55
Yeah, you’ve called it In The Face of Catastrophe: How a Traumatic Brain Injury Became a Blessing. So I know there’s blessings. I’m that guy as well. I’m The Unexpected Way That a Stroke Became The Best Thing That Happened To Me, guy I wrote that book. What are your thoughts like? Where are the blessings? What are they? Give us a little bit of an insight, because there’s a lot of people going through stroke who I actually received comments on the YouTube channel about who say it’s the worst thing that happened to them.

Bill Gasiamis 44:29
It’s terrible, it is, you know, they want to people say the most amazing and horrific things on the comments on YouTube and I don’t understand, like, I’m not sure how to bring people around, and I don’t know if it’s my job to but this type of sharing, this type of stuff, is kind of a window into our minds, our strange minds, that there’s blessings in all of this. So this is what I want. I want to open the window a little bit and let people see through, where are the blessings? How are they there?

Jen Goldman 45:06
The blessings are that I have become close with my family than I ever was before. I want to talk them now. I love them. I’m I’m aware of how much I love them. I’m really grateful for my connection with them. I’m doing like a hair of my mom, and I really feel connected to her, and I love her, and she means so much to me. That’s the blessing in all this, is recognizing how the gratitude I have for the people in my life.

Jen Goldman 45:35
That’s the first blessing. The second blessing is that it’s a miracle that I’m alive. It’s a miracle that I’m alive. And I really reconnect that miracle every day, every time I take a breath, every time I open my eyes, it’s a miracle that I’m doing that.

Bill Gasiamis 45:56
Yeah, they’re pretty cool blessings in amongst all of that, you’re dealing with, all the other things that we spoke about, that your body not working the way that it was, your cognition, not being the way that it was, your lifestyle, not the way that it was. Doesn’t that cloud those blessings, or are they completely separate and different things? One is something that you have to overcome. It’s a challenge, and the other one is something that’s a gratitude experience or practice.

Jen Goldman 46:28
I practice acceptance for the things I can’t control. I surrender every day. It’s really difficult, but I have to what are my other choice? What’s my other choice? I’m not going to give up. I can’t give up. I never will give up. The only thing you do is push through every day, and I do that every day.

Bill Gasiamis 46:49
What’s interesting as well is you said that you’re more connected to your family. You’re aware of how much you love them, etc. Before were you just going through the motions? Did you not know that you really love them.

Jen Goldman 47:02
I took them for granted. I took things for granted, and the people in my life for granted. I didn’t realize what I had, and now I do.

Karen Hersh Lifer 47:16
You know, it’s also, what is connection and and what is presence? And you know, for, you know, there’s this part. The very last entry in the book is called hineni, which is a word from the Old Testament, and it means I am here. I am present. And the point of that last entry is that through everything, I look back at that first year as a gift and a blessing, because I had the ability to spend time with Jen, especially being completely present with her.

Jen Goldman 48:14
Yeah, and nothing in that time. There was no filters between us. We’re just so raw and real and connects to each other, and you can’t, that’s just really impossible to like to unfabricate that time. You would never get that experience if you didn’t have to.

Karen Hersh Lifer 48:34
You know, it’s interesting, because when my mother in law passed away, we were very close to her, and I spent some time with her, and we all spent time with her when she was in hospice, and we knew she was passing, and the conversation was real, like about life, what a time to be us at that point, right?

Karen Hersh Lifer 49:08
We’re, talking about you know, Papa, her husband, you know, and telling stories about how you know, things that had gone on and but it’s, it’s like, it’s so intense and so connected that is sacred and sacred, right? Time is sacred, yeah, and I agree. We actually so the blessing me was the sanctity of that time that we got to spend with each other.

Bill Gasiamis 49:50
It’s very much a gift. I’m of the same mind with in law, we had Monday to. Saturday with him, and the girls were there pretty much the whole time, in and out, different shifts. We all made sure that we’re in there as much as possible. And that’s the interesting thing. Even though they knew he was passing, they were able to say that the days that they spent with him were really precious, and that it made it I’m not sure if the word’s better. I might be not speaking how they would describe it, but it made it a little better.

Bill Gasiamis 50:26
The whole situation and even the eventual outcome seemed to they were able to give, you know, some thoughts, and they were able to share some things with him, even though he wasn’t responding, and they were able to have a conversation with him. And in the room, we were chatting about past things and all that type of stuff, memories, etcetera. And it was a lovely and difficult time, all at the same time, all the emotions.

Bill Gasiamis 50:54
So I hear what you’re saying, especially now that you’re quite some time out of that acute phase, and you get to experience that blessing more regularly, and you’re able to aware of it more often, and you’re able to really appreciate it and take it to heart. That’s kind of what I get with the kids when I see them, when they pop back into the house after they’ve been busy for two weeks I haven’t seen them, and it’s like, wow, this is really cool. You know, I get to hang out with my boys with their mum at the same time.

Bill Gasiamis 51:32
And it’s really the the thing that I appreciate the most in life. If I’m going to hang out with anybody, I want to hang out with them as much as I can without being too a dad you know, who just over, over, enters their life, you know, all the time, and crowds them and all that type of thing. In the book, you’ve got 10 chapters, it goes through basically the whole event until the end, which is the end of the book, not the end of the journey or the story the Epilog onward and upward, but at chapter eight, you talk about the seizures. Is that something you still experience?

Jen Goldman 52:16
No, thankfully, I’ve had them under control for two and a half years now, thank God I’m on the right combination of medicines, and that was what I had to do to to make them stop.

Bill Gasiamis 52:31
Do they know why the seizures occur? I have an understanding that for some people, it’s because of scar tissue that develops on the brain. Yeah, tell me a little bit about that. What is behind the seizures?

Jen Goldman 52:44
The scar tissue? That’s what the scar tissue.

Bill Gasiamis 52:49
And does it somehow interfere with the way that the neurons fire and the way that the brain communicates to it? Okay, yeah, and medication is just able to settle that down completely, get rid of them. How did how much has it worked?

Jen Goldman 53:06
It’s worked completely. I’ve not had a seizure in two and a half years. Thank God, yeah.

Bill Gasiamis 53:11
And what were the seizures like to experience? Were they violent, or were they kind of, sort of, did you know that they were happening and they were coming on?

Jen Goldman 53:19
No, they complicate. Came out of the blue completely. They would come out without any warning. Um, I would be unconscious when it happened, and I would wake back up with a headache.

Bill Gasiamis 53:43
What was it like to re experience, your daughter going into that stage, Karen?

Karen Hersh Lifer 53:50
It was, it was terrifying. It was absolutely terrifying. And especially because when she came out of it, she you it she her cognition was, again, had decreased, and so she had her seizures came like six months after her stroke, yeah, and it was just, we were just getting to the point where writing together, you know, we’re working on things, things are and it was just, oh my god, you know. Then there’s back down to, you know, and then to try to sort of rebuild that.

Bill Gasiamis 54:35
So you seem to talk about it with quite some ease. I know it’s a difficult conversation. Does it re traumatize you when you discuss it? Or have you been able to reflect on it as an event, as something that’s in the past? How do you you guys experience it when you talk about it? I know some people get triggered, especially by anniversaries and by having the conversation, I’ve been talking about what happened to me for the best part of 13 years now, and I talk about it like it’s a memory in the past, something that happened almost not even to myself. What’s it like for you?

Karen Hersh Lifer 55:16
You know, I actually did some trauma therapy work around it, and I was able to process it in that in that way, through this therapeutic technique called EMDR, mm hmm, which is eye movement desensitization. And so for me, I, you know, I even if I go back and think about the scene in the store when I saw Jen and she, you know, as I tell it to you, now I see it, but it does not trigger me. It does not terrify me. It feels distant.

Bill Gasiamis 56:15
Yeah, that’s good. That’s the point of it, right? That’s dealing with it, talking about it makes it feel like an event that happened in the past, and you’re not bringing it to the future and re-traumatizing yourself every time you talk about it. And that’s I asked that, because for people who are watching and listening, who perhaps aren’t at that stage yet and are challenged by that, the thing that got me there was therapy, was counseling, like heaps of counseling, so that I could just express it, and what’s the word like, just get it out.

Bill Gasiamis 56:51
Process it, and then as a result of that, it became a story, rather than another experience that I was having. Exactly, yeah, yeah. And then Jen, your first entries into the book. How did they come about? Well, actually, it was your mom’s writing at the beginning. It was just about whatever she was going through and processing as well. And then how did you start interacting and becoming a part of that kind of first manuscript.

Jen Goldman 57:27
I spoke to her about what I wanted to write, and she would physically write it for me, and we would process it together. And it was actually really beautiful experience having that time with your mom. Yeah, was very joyful. I loved it.

Karen Hersh Lifer 57:43
It was it was so cool. It was really cool.

Bill Gasiamis 57:49
You guys been through a lot. I totally get it right. This is so cool to see you both doing this together and kind of transforming it further from something you wouldn’t wish upon anybody to then becoming, you know, this thing, this beautiful thing, a book that you get to share, hopefully people will be able to pick it up, read it, connect with it, learn from it, grow from it, heal with it.

Bill Gasiamis 58:19
It sounds like it’s going to be that type of book, like, it’ll it’s going to give people, I suppose, what’s the word? It’s going to give them permission to also find the blessings in their own trauma or journey.

Jen Goldman 58:34
We hope it does, yeah, yeah. We hope it’s a guide for people navigating trauma and catastrophes of their own.

Bill Gasiamis 58:41
How long did it take to go from that first manuscript to the book in the end? How long did it take you guys to get it completed?

Karen Hersh Lifer 58:49
It was pretty quick. I mean, we wrote it in maybe six months or so, yeah, and you know, when we wrote it, it was like, I knew this is really a great book, you know? And so try to go the traditional route of finding an agent to get us a publisher.

Karen Hersh Lifer 59:17
And that was tough. And so eventually we found a publisher that does hybrid publishing called Greenleaf. And there, there are handful of publishers that do hybrid publishing. But Greenleaf was, for us, our first choice, just because we thought it would help us produce the best product. And so we submitted the manuscript, and they wrote back and said, we’re going to do this, we accept this.

Bill Gasiamis 59:56
And what’s hybrid Publishing?

Karen Hersh Lifer 59:59
Hybrid publishing. So, literally there’s three types of publishing, really. So there’s, there’s print on demand, self publishing, where you, you know, you basically somebody might buy the book. There’s no hard copies like this sitting around. They’re not going to be in a bookstore or on a a library shelf there.

Bill Gasiamis 1:00:27
That’s my version. Yep, that’s how I do mine. Yep.

Karen Hersh Lifer 1:00:31
Okay, so that’s print on demand, and, and, and. So the other extreme is where you get an agent and they find a publisher, and they pick up everything for you, all the costs. And then hybrid publishing is where you find a publisher who will accept your work, your manuscript, and then you contribute to the cost of producing it.

Bill Gasiamis 1:01:00
Okay, so then there’s a couple of different options. I wanted to mention that so the people watching and listening who are perhaps thinking about writing their own book, which I highly, highly encourage them to do, know the different options. Can you show us the Book One more time, and then can you tell us where people can go and find it. Mention your website. I know it’s available on Amazon. It’s a gorgeous it’s such a gorgeous book cover.

Karen Hersh Lifer 1:01:30
Thank you. We created that ourselves. We designed it ourselves. So basically, the book is available anywhere books are sold. So Amazon, although you guys are in Australia, so you, you might have to, yeah, Amazon, or Barnes and Noble, I don’t know if you have access to.

Bill Gasiamis 1:02:00
You know what it is, Amazon, have a print facility in Australia, near where I live. So local people who live locally, New Zealand or in the southern hemisphere near us will be able to order it on Amazon, and they’ll get it delivered. And then for people overseas, I know that there is a print facility in the United Kingdom, and there’s one in the United States. I’m not sure if there’s one other in Europe somewhere. So between the four of them, you order one, and the books come printed one at a time, direct from the print facility. It’s fantastic.

Karen Hersh Lifer 1:02:39
And so the website is inthefaceofcatastrophe.com. And Jen’s on a lot of social media.

Jen Goldman 1:02:52
@jenniferrosegoldman.

Bill Gasiamis 1:02:53
Yeah. I’ll have all the links in the show notes, I’ll make sure people can find it. I really want to thank you guys for being on the podcast, sharing your story. Congratulations on your journey so far. I mean, it’s just fabulous. You guys have done a tremendous job, and I look forward to hearing about further successes and stories in the future. Reach out anytime. Thank you for being on the show.

Karen Hersh Lifer 1:03:24
Thank you so much, Bill. We really appreciate it.

Bill Gasiamis 1:03:27
Some episodes sit with you long after the mic turns off. This was one of them for me, Jen’s strength doesn’t shout, it radiates. And Karen’s presence, the way she documented their trauma to help others is a reminder that healing often begins without being seen and being heard. If this conversation moved you or reminded you of someone you love, share it. Let them know they’re not alone.

Bill Gasiamis 1:03:53
If you want to go deeper my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is at recoveryafterstroke.com/book. You can also support this podcast via YouTube, super thanks, or join the community on Patreon. Thanks again for showing up for this podcast and for your own recovery. We’ll see you in the next one.

Intro 1:04:14
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 1:04:44
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 to. 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 1:05:09
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Intro 1:05:35
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The post Jen’s Brain Bleed Stroke Story: From Coma to Connection appeared first on Recovery After Stroke.

Some mornings you wake up and think, Today will be different. Today I’ll catch up.
But by lunchtime, you’ve folded a towel, answered one message, and the fatigue hits hard.
And the guilt follows right behind it.

Sound familiar?

If so, this post is for you. Because stroke fatigue recovery isn’t talked about enough, and it’s not as simple as needing more sleep or drinking more water. It’s complex, emotional, and deeply misunderstood.

Let’s talk about it.

Post-stroke fatigue is more than being tired. It’s not just feeling a little drained after activity, it’s a full-body, full-brain depletion that can strike at any time, without warning.

You might feel:

• Like your brain is in a fog, even if you slept.
• That walking across the room takes more energy than a gym session used to.
• Overwhelmed by tasks as simple as reading a menu or answering a text.
• Frustrated when others don’t understand what’s happening inside your body.
  

This isn’t laziness.
This isn’t weakness.
This is your brain recovering from trauma.

One of the hardest parts? Other people can’t see it.
You may look fine, which makes it harder to explain why you cancel plans, nap at odd hours, or get overwhelmed in noisy places.

People might say:

“You look great! Are you back to normal now?”
“You’re just tired — we all get tired.”

But stroke fatigue isn’t regular tiredness.
It’s not solved with coffee or a power nap. It can hit in the middle of a conversation, after a short walk, or for no reason at all. It’s not just physical — it’s cognitive, emotional, and neurological.

And yes, it’s real.

Recovery doesn’t mean “get over it.”
It means learning to:

• Pace yourself without guilt
• Rest before you crash
• Explain your limits without apology
• Celebrate small wins, even if they don’t look like progress to others
  

It also means dealing with emotional layers: grief for the old version of yourself, frustration with your pace, and the fear that “this might be as good as it gets.”

But let me tell you something from experience: stroke fatigue recovery is not a straight line.
It’s more like a spiral, and even when you feel like you’re going in circles, you’re still rising.

When stroke fatigue hits, it’s easy to zoom in on what’s going wrong.
You see the unwashed dishes, the texts you haven’t answered, the goals you haven’t reached.

Try this instead:

• Zoom out. Look at where you were 3 months ago.
• Look at what you can do now that you couldn’t before.
• Acknowledge that healing is happening, even if it’s slow.
  

Recovery doesn’t mean feeling amazing every day.
It means showing up anyway, even if that just means brushing your teeth and sitting in the sun for five minutes.

If no one’s said it to you today, I will:

You’re doing better than you think.
You’re not lazy. You’re not broken. You’re healing.

And healing looks different for everyone.

There are days when stroke survivors feel almost normal, and days when the deficits hit hard. And both are part of the journey. The more we talk about it, the less shame we carry.

So if you’re navigating your own stroke fatigue recovery, be kind to yourself. Let the small victories count. Ask for help. Rest without apology. And remember that every step forward, no matter how small, matters.

If this resonated with you, I share stories, tools, and encouragement in my book
The Unexpected Way That a Stroke Became the Best Thing That Happened
It’s written by a stroke survivor, for stroke survivors, and filled with insights on how to move forward, one day at a time.

Emily and I recorded this episode while feeling the weight of our deficits, what followed was one of the rawest conversations on stroke recovery.

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Recovery After Stroke Patreon

Highlights:

00:00 Emily Stewart’s Stroke Journey and Initial Conditions
02:28 Life before the stroke
07:02 The Day of the Stroke
16:51 Medical Diagnosis and Surgery
25:21 Finding Blessings in the Unexpected
33:06 Recovery and Therapy
46:41 Living with the Invisible
54:14 Daily Life and Adjustments
54:51 Impact of Social Media and Support
1:06:17 Emotional and Mental Challenges
1:06:58 Final Thoughts and Encouragement

Transcript:

Emily Stewart’s Stroke Fatigue Recovery Journey and Initial Conditions

Bill Gasiamis 0:00
Today’s episode almost didn’t happen. Emily Stewart and I both woke up feeling the weight of stroke recovery, those days where the fatigue is deeper, the brain fog is thicker, and even the basic things feel like a battle. But we hit record anyway, because if you’ve been through a stroke, you know those are the days that matter the most. Emily’s story is layered. Before her stroke, she’d already lived with alopecia for years, and she shared that journey publicly to help others with their own identity in a world obsessed with appearances.

Bill Gasiamis 0:35
Then in 2024 while on a trip with her husband, she had a stroke caused by a carotid artery dissection. What followed was an experimental surgery that may have never been done that way before. This is a conversation about medical miracles, hidden deficits, messy recoveries, and what it takes to keep going even when your body says stop, whether you’re early in your recovery or deep into the long game. Emily brings perspective and honesty you’re going to feel in your bones. Let’s get into it. Emily Stewart, welcome to the podcast.

Emily Stewart 1:11
Thank you. It’s good to be here.

Bill Gasiamis 1:13
It’s great to have you here. So let’s let people know the conditions under which we have attended, because it’s really important. So you told me that?

Emily Stewart 1:25
Yeah, yesterday and today, of course, at the like, most inopportune times, I just woke up, like, really feeling my deficits, really feeling tired, and just, you know that exhaustion that comes as part of the stroke recovery and my aphasia was a little worse, and my thought process was slow, and I was like, I’m not sure if we can do this today. But then I just thought Bill and his listeners, of all people in the world, would understand exactly what I’m going through, what I feel like, and so we’re going to just muscle through, carry on and push forward.

Bill Gasiamis 2:00
I love that you did that, because I woke up this morning with the biggest headache I’ve had in ages, my deficits as well. I love what you said, feeling them more than usual. So my left leg feels a real tight, and it’s kind of like telling me you shouldn’t probably be walking. But nonetheless, I got up and I thought, if I cancel, that’ll be the wrong thing to do. I don’t like canceling either, because people make a lot of effort to get to the podcast just like you.

Bill Gasiamis 2:29
And then I thought, “Oh well, we’ll just get it done.” And there you are. That’s the first thing that you said to me, and I felt a little better. So if this podcast is basically what we’re trying to do is we’re trying to say to people, if we seem a little bit strange during the podcast, that’s why, and you guys are alright with that, because, you know what little bit strange?

Emily Stewart 2:49
Yeah, feels like, yeah exactly.

Bill Gasiamis 2:54
Emily, tell me a little bit about what life was like before stroke.

Emily Stewart 2:58
So before stroke I said this actually to my family earlier today. I’m like, that was actually the best time of our lives. We’ve had a really great life. My husband and I have been married for 27 years. We have four kids, and I was a stay-at-home mom and homemaker for 25 years, and I loved it. I loved everything about it. I felt like I really mastered that, and I was really good at it. And our young, well, not our youngest, but our last child has had just left the home, and so she was now off on her own.

Emily Stewart 3:30
Now all of our kids were off on their own. It was just my husband and I, and it was like this time that we’d, like, dreamed of, right? Like, we were so excited to just be the two of us in this moment together, because we got married young. We had kids right away. We had four kids in five years. And so our life was just like consumed with kids very early on, and so we were.

Emily Stewart 3:50
We had really looked forward to this time, our whole married life. And so we were, we love this it was about 10 months prior to our stroke that it was just the two of us, we and we had a great time. We traveled, we did whatever we want. We kind of thought “This is it.” We’re like, we made it. We survived the hard years, like, this is it. We’re gonna have a really good time now going forward. So that was kind of life before stroke.

Bill Gasiamis 4:13
So four kids. How young were you when you got married? So I was 21, I had two kids. That was enough for me.

Emily Stewart 4:20
I was 21, and so I had amy first at 22 my second at 23 and then there’s a three year break, and then two more. Boom, boom, back to back.

Bill Gasiamis 4:30
Wow, busy household.

Emily Stewart 4:32
Yeah, exactly, it was.

Bill Gasiamis 4:34
Breakfast, Bedtimes, Dinner, 24/7

Emily Stewart 4:39
Yeah, literally, which was fabulous, and it was exactly what we chose. We chose that life, we chose. Thankfully, my husband was an awesome provider, and he really chose that and it worked really well for us. I know it doesn’t excuse me, it doesn’t for everybody, but for us, it worked really well. We chose that life. We chose that I would be the homemaker.

Emily Stewart 5:00
And like, I said, I felt like I was really good at it, like that was kind of what I was made for. Was motherhood and, like, running a home, and I was efficient, and I felt like, I was good at it. It was really what I had mastered, yeah.

Bill Gasiamis 5:15
Wow. So the oldest, how old would the oldest say? And how old is the youngest?

Emily Stewart 5:20
Right now. So the oldest is 26, you’re going to challenge me 26, and then my youngest is a, let’s see, is he 20? I think he’s not quite 26 and then my youngest is about to turn 20.

Bill Gasiamis 5:36
So my kids.

Emily Stewart 5:37
And then we have, I mean, the kids are great, blah, blah, blah. We have three grandkids. So that’s really the best part.

Bill Gasiamis 5:46
Okay, I love that immediate just forget about the kids. Let’s talk about the grandkids.

Emily Stewart 5:51
We were here. We survived the kids. Now we have grandkids. Yeah, and that’s the best.

Bill Gasiamis 5:56
Okay, so I thought that my tendency to, like, feel neglected when my kids came along and my parents completely ignored us and just made it all about the grandkids, I thought that I wasn’t going to do that. It sounds like when I get my grandkids, I’m going to be just like you, and I’m going to like, forget about you guys.

Emily Stewart 6:18
Yeah, like they we have one of those cameras at our front door, and the second the camera goes off that they’re here, we, like, run out, screaming out, you know, fighting who’s going to get out there fast enough to get the grandkids out of the car, and then we’re like “Oh, yeah. My son’s here too, and his wife’s here too” you know.

Bill Gasiamis 6:35
I love it. I love it. Okay, I’m looking forward to that part. Hopefully my kids get their act together as well, and then they, you know, bring us some grandkids. But I don’t know. I’m not sure, it sounds like a really just typical kind of existence, trying to make do you get to the other end, and now you’re looking for a little bit of me time, new identity, new relationship with your partner, just because there’s no more kids anyway anymore?

Emily Stewart 7:02
And we were talking about starting a business. I’d always wanted to open a bakery, and we were talking about doing that. And, you know, we had all these big like, hopes and dreams, and then all of a sudden, it’s like, just kidding, you thought you knew what life was about. Turns out you don’t know anything.

Bill Gasiamis 7:18
So what happened on that day?

Emily Stewart 7:20
It was a stroke week. Actually, my husband, in July of 2023 he took a job. We live in the Dallas area and the USA, kind of outside of Dallas, kind of in the country. And my husband had taken a job in 23, in the summer of 23 in a company that’s in Birmingham, Alabama, which is about a 10 hour drive from us. And so he would go two or three times a month. He would travel there, and I just be here by myself. And it was fine, whatever, but he’d done that quite a few times. And then we got to January, and I was like “You know what? We don’t have any kids.”

Emily Stewart 8:03
We have nothing going on. I want to go with you. And he was like, Okay, let’s go. So I booked my flight, and I went with him to Birmingham. So we arrived on a Monday night, and got there, you know, at bedtime. And so we went to bed, excuse me, and that night, I woke up with a really bad headache, and I thought, you know, we we just went on an airplane, and I think it’s just like the elevation changes.

Emily Stewart 8:27
And I had been sick a couple of weeks prior, and so I thought, maybe I’ve got like, a lingering sinus infection going on or something, just this headache and kind of in my face and and head and behind my eye. And I was like, well, it is what it is. I took some medicine. I went back to bed. Tuesday morning, he woke up and he was like, are you okay? And I said, Yeah, I’m going to take you to work, and then I’m going to go to an urgent care. And for those who don’t know an urgent care in the US is like, it’s like, a doctor’s office.

Emily Stewart 8:54
Just a regular doctor’s office, but you don’t have, like, a general practice doctor, that is your assigned doctor. It’s just like, for people like me who are traveling, maybe have a little medical something come up, or it’s not really urgent, but it’s like, you can’t get into your regular practice doctor, and so you go to this place. And so I said, I’m going to take you to the office, and then I’m going to go to this urgent care. I’m gonna get an appointment, go to urgent care, and just, I know it’s a sinus infection, I’m just gonna go get some antibiotics and move on.

Emily Stewart 9:21
And he said, Okay, so I dropped him off, and I on the way home, I was like, I am so tired, and so I stopped and got an energy drink. Bad idea, but I stopped and got an energy drink and drank it. And got back to the hotel and took some meds, like Sudafed and things that were hopefully to clear out my sinuses, and got an appointment, and went over to the urgent care, and when I got in, she said “Your blood pressure is kind of high.”

Emily Stewart 9:45
And I said “Well, yeah, I drink an energy drink, and I, you know, I’m on Sudafed and stuff, and so that that’s on par.” And she goes “Well, just check with your GP when you get home.” And I’m like, okay, that’s fine, whatever. Anyway, met with the doctor. He gave me a prescription for antibiotics and a steroid, and said you’ll be fine in a couple of days.

Bill Gasiamis 10:05
Let’s take a breath for a moment. This part of Emily’s story, the rare surgery, the early days of rehab, the shock of waking up with paralysis, might feel familiar if you’ve ever had to start again from zero. I just want to say, if you’re in the middle of that right now, you’re not broken, you’re rebuilding. And to everyone who supports this show through Patreon or YouTube, super thanks. Thank you. You’re not just backing a podcast. You’re making space for stroke survivors around the world to feel seen, understood and part of something bigger.

Bill Gasiamis 10:38
Now back to Emily as she shares what it’s really like to walk again, one shaky step at a time.

Emily Stewart 10:45
So that night, my husband finished work, I went and picked him up, and we went and had dinner, actually, with a coworker that I’d never met before, and we had dinner with her, and then, actually, three months later, I ran into her, and I did not recognize her at all, and I was kind of embarrassed, but I was like, there’s only one person I’ve met from here, so I kind of just deductive reasoning. It has to be her, but I didn’t recognize her anyway.

Emily Stewart 11:11
So Wednesday, sorry, it’s kind of long winded, but Wednesday, he got up and he said, I said, “I’m going to feel better today” like I’m determined to feel better today, so I’m going to take you to work, and then I’m going to go shopping or something. I’m going to sleep in a little bit, and then I’m going to go shopping a little bit. And Wednesday, I just felt terrible. I just, I couldn’t really describe what it was. I had some weakness on my left side, and still that pounding headache.

Emily Stewart 11:38
And I kept thinking, I’ve just got to get these antibiotics to kick in, like I’ve just gotta feel better soon, wasting my whole trip with my husband, you know. And so Wednesday night, it started to rain really hard, and I had to go pick him up. And so I got in the car and drove to pick him up about 40 minutes away. And when I got there, I really, the blurred vision was really kicking in. And I when I got there, I was like, I shouldn’t be driving. And so I got out and got in the passenger seat, and he drove. And he said, what’s going on? And I said, I just feel terrible. I can’t describe it to you.

Emily Stewart 12:14
That’s nothing I’ve ever felt before. I just feel terrible. And so he said, have you eaten today? And I said, No. And he goes, let’s go get something to eat. It might just be like, low blood sugar kind of thing. And so we went and got something to eat. Didn’t really make me feel better. Went to bed Wednesday night. Thursday, I said, I am just going to stay in bed today. You take the car and go to work. I don’t feel well, so he left, and I stayed in bed, and after a little while, he said, I’m going to come and pick you up for lunch.

Emily Stewart 12:43
So he came back. About lunch time, I had managed to get myself up, get a shower, and I was like, I’m just going to steam all this out. I turned the shower on really hot to kind of steam it out. And I ended up passing out in the shower. And eventually got up, got myself back together, and got ready.

Bill Gasiamis 13:01
When you passed out. Were you standing? Did you collapse? Did you fall?

Emily Stewart 13:06
I woke up on the floor, and that’s, I don’t remember, actually, like passing out, like I’m going to lose it, kind of feeling which I have passed out before, and that was kind of how I felt before, and this time I didn’t, I just woke up and I was on the floor. So I kind of stayed on the floor for a minute till I was sure I got myself together. And then I got up and I finished getting myself ready.

Emily Stewart 13:28
Excuse me with this cough, but, I kind of got myself together. And then he showed up, and when he showed up, he hadn’t taken a room key, and so he knocked on the door, and it took me a little while to get from the bed where I had been sitting over to the door, long enough that he was said he was kind of sitting there, like looking back at the elevator, like, do I go get somebody to come up and open this door for me? You know, like he was starting to really worry. And he came in the room. Finally, I opened the door, and he and I took his hands, like, right away.

Emily Stewart 14:01
And I was like, I’m so unsteady. I’m just completely, like, wobbly. And he said “What do we need to do?” And I was like, I don’t know. You know the decision making now, I know the decision making process was impossible at that time, but I was just like, I don’t know. And he kept saying, do we need to go back to urgent care? And I was like, I don’t know. I don’t know what to do. I don’t know what I feel. I don’t this is totally foreign to me.

Emily Stewart 14:23
And I had actually Googled my symptoms earlier that day, which is kind of terrifying, but I had Googled my symptoms and it said two things, either a stroke or the onset of MS and I was like “Well, it can’t be a stroke, because I’m not old, right? I’m 46 I’m healthy.” I’m literally in the healthiest shape I’ve been in probably 25 years. Like, it can’t be a stroke. And so I just mentally checked that off. And I was like, it must be MS and so when he was like, let’s go back to urgent care, I was like, what are they going to do for me?

Emily Stewart 14:55
You know, if it’s MS like, what is an urgent care not my doctor going to do for me? So I just was like “Oh, whatever, whatever.” And then he said, okay, you sit down. And he kind of took me by the hands and sat me down on the bed. And he said, when he sat me down on the bed and looked in my face, he could see that the left side of my face was drooping. And so then he said, we’re going to go to urgent care. I said, Okay. And he grabbed my phone, and I said, this is the, you know, showed him my phone.

Emily Stewart 15:24
I said, this is the urgent care I went to before. And he and he pulled up my phone and he said, there’s one appointment left for today, and it’s in 15 minutes. So get your shoes on and let’s go. So I put my shoes on and off we went. And he put my symptoms into the registration of the urgent care. And as soon as I got in there, they said “Just sit down. We’re coming to you.” They came out to me. They said, Put your hands up. And I put them up, and it was like, you know, one was up high, and one was like, at my waist, and they were like, looked in my eyes.

Emily Stewart 15:54
And they said, I think she’s having a stroke. You need to go to the hospital and they need to do a scan. And so he said, where’s the closest hospital? And they said, it’s about a mile and a half away. And he was like, great. So we jumped in the car. Well, not jump, but we got in the car and drove to the hospital. And I think they said, we’ll call the hospital and tell them you’re coming. And I don’t know if they ever did that, because we sat for a few hours in the hospital, in the waiting room, just waiting, you know, for them to decide they wanted to treat us or whatever.

Emily Stewart 16:23
And then they ended up, I remember, I have, like, bits and pieces of it, like, I remember he was feeding me Chick-fil-A, and it was a long time later before I was like, where did the Chick-fil-A come from? And he said, somebody from work. I told him I wasn’t coming back because we were in the emergency room. And he sent us Chick-fil-A, and he’d been feeding me like a bite of Chick fil A, but I remember taking a bite and then just being like, so tired, I could not hold my head up, like, just put my head right back down.

Emily Stewart 16:51
And he’d give me another bite, like, come on do you want another bite? You know, like you do with a toddler, like, you can do it, come on. You can do it. Just one more bite. And I would, like, take a bite and then head back down and just kind of basically go back to sleep. I wasn’t ever unconscious, but I was basically asleep. You know that whole time.

Bill Gasiamis 17:08
Are you guys the type of family that food fixes everything as well?

Emily Stewart 17:12
Yeah, absolutely. And so Addie was like, same thing, like, your blood sugar’s low. You haven’t eaten today, which I don’t have a trouble with blood sugar, but that’s kind of something that we always say you gotta get a little energy in you, you know, kind of thing. And so eventually they did the scan, and they said she has arterial carotid artery dissection, and her right carotid artery, and they said, the inner lining, you know, for those who don’t know, it’s like an inner lining and outer lining of your carotid artery.

Emily Stewart 17:46
And the inner lining was kind of had come away, and was kind of closing up the artery a little bit, right, blocking the artery, the little flap and so it, they said, the way we this is very treatable, we give you IV blood thinners, and we’ll just do that overnight, and then we’ll do another scan in the morning. I said, Okay, and so they started doing that, put my IV in and started the blood thinners, and my husband said, I just got less and less responsive as the night, when I got to where really all I did was sleep and just he would try to talk to me, and I couldn’t really communicate anymore.

Emily Stewart 18:24
And the morning came, and they did a scan, and then they decided, and again, because I was not really there for this part, I don’t know exactly the situation, but they decided that hospital was not sufficient, and that I needed to be transferred to another hospital, which is actually a huge miracle, in my opinion, that I happen to be in this city where there’s a teaching and research, neurological research and teaching hospital, and so UAB hospital. Shout out to UAB.

Emily Stewart 18:59
They transferred me to UAB hospital and via an ambulance, and by the time they they took me in an ambulance, and my husband drove, and by the time he got there, I was already in surgery, like they had taken me right away, because they said that flap that had come away from the outer part of the artery is now 100% blocking that carotid artery, you are 100% blocked. And so they said, they told him, you know, we do this surgery. It’s fairly routine. It’s about a 90 minute surgery, and we just go in with a scope and it’ll be fine.

Emily Stewart 19:37
And so that’s what he planned for. They said, we usually get about 50% opening, which is really great, and it’s about a 90% success rate. And so that’s what he went in, thinking an hour and a half, we’ll have some some good success, and on with life, right? And so they sent him to a waiting room, and obviously I was already in surgery. And hours went by, and just hours and hours went by. And I think he ended up being in there five hours. And finally the doctor came in and he said, she’s fine, but we had some complications.

Emily Stewart 20:16
And proceeded to explain that they went in, he went in through my right femoral artery to try and get up the right side, and couldn’t get the scope in enough to put a stent in. And so for whatever reason, he decided he was going to call a vascular team and a vascular surgeon to come in. And so he called this vascular team who happened to be out, just out of surgery, happened to be available, happened to still be in the hospital, to come in, and they went through my left carotid artery up that side and up and over from the top.

Emily Stewart 20:50
And when he got to the top, he told the surgeon, I can see now I’m going to go ahead and place a stent here, because I can see it. And so he placed it. And when he placed it, the surgeon that was still in there, from the under part of the carotid artery could see an opening, and so he placed a stent too.

Emily Stewart 21:07
So I actually have two stents that overlap in my right carotid artery, and they were able to get 100% blood flow, 100% opening back up again. Yeah.

Bill Gasiamis 21:20
Wow.

Emily Stewart 21:20
So it’s in my opinion. I mean, I know everybody doesn’t believe religiously what you will, but I see all of this as miracles, and I am grateful for everyone you know.

Bill Gasiamis 21:30
Why not? As if it’s not miraculous that two humans can open up your arteries on either side of your body and drive something through every blood vessel and get into the top.

Emily Stewart 21:42
From your leg, your groin, all the way up to your head, and me they’re in the middle.

Bill Gasiamis 21:49
And see each other. “Hello, hello” as if that’s not a miracle.

Emily Stewart 21:54
And it’s really amazing, because I went to the dentist fairly recently, and he took scans. And he’s a friend, a long time friend of ours, and he’s like “Oh my gosh, this is so amazing.” And I was like, what? And he goes, have you ever seen your like in an x ray? And I was like, my stent? And he said “No.” And so he took a picture of him, and he was like, Look at this, and he and he sent it to me, and I was like, That is phenomenal. You can see exactly where they overlap. And it’s, it’s phenomenal.

Bill Gasiamis 22:18
Yeah, it’s a proper bragging the bragging rights, the surgeons, the scientists, the guy who invented the little thingy majiggy that goes into.

Emily Stewart 22:28
I know, exactly.

Bill Gasiamis 22:28
The guy who invented the thing that you know, goes, the ladies that are there that are doing that stuff and the like, the whole entire thing the hospital that exists in the way that it exists, like every single part of that thing, is a miraculous thing, and it wouldn’t exactly it’s not meant to be possible. You’re not meant to do that to human beings.

Emily Stewart 22:53
Well and all of that aside, where we live in, outside of Dallas, we’re like, 45 minutes from the closest hospital that could have even tried to handle this situation, and I would have been alone. I’m out on property, like, away from everybody else. I’m like, had I not been with my husband that week? I really do believe, like the sleepier I got, I probably just one night would have gone to sleep and just not woken up. Yeah, no, and he wouldn’t have known, it’s wild.

Bill Gasiamis 23:24
Yeah, a completely different outcome that would have been. There’s so, so many blessings there. I mean, you just, you can tick them all off. We’re here, we’re talking about it. That was 2024 I mean, we’re 2025, that is a short amount of time for somebody to end up in the condition that you’re in, which is an amazing outcome, like, it’s just brilliant. And, you know, I often say, and I know not everyone has the same opportunity and luck, and things don’t go well for everybody.

Bill Gasiamis 24:00
I totally get it right, but we need to make sure that when they do go right, that you pay attention and that you let you know you accept the fact that they went right, and then you do something positive with the fact that now you have the opportunity to take things in your life and achieve more things that maybe would have been robbed from you if you didn’t go to that trip with your husband. Like, do you know what I mean? That’s the kind of game that I play.

Bill Gasiamis 24:27
I play that game. They opened my head, they found a blood vessel, you know, four centimeters or two and a half inches in from my ear into the middle of my head. Like, they found that, they pulled it out, they fixed it up, they closed my head and they sent me home. I mean, like, as if.

Emily Stewart 24:45
Yeah, my one day in therapy, when I went to inpatient rehab, I got emotional because I was like, I just am so, you know, you get emotional. It’s emotional, and I was emotional, and my therapist said “You have to look at how far you come.” Like you literally, a week ago, you had people in your brain, like messing around in there, you know. And, yeah, you should be tired, you know, you should be exhausted. That is completely normal, and it’s just that perspective, yeah, it’s just crazy.

Bill Gasiamis 25:21
It takes a time, a little bit of time, to adjust and come around and notice what the blessings are. Even when the outcomes have been worse or more debilitating, or whatever, the outcomes are always in someone, if someone can do like, what’s good about this? Not that, not this is good, but what is good about this terrible situation? There will be something that you can find. And if you can’t find anything, you need to look harder, because there’ll be something and then you need to work on that.

Bill Gasiamis 25:50
You need to use that as a leverage to continue sort of finding the blessings, the things that went well, relationships, whether it’s you know, the people you met, the people that helped you, the researchers that you never met, that did the work that made it possible for the doctors to do the like, there’s blessings everywhere. You just gotta well.

Emily Stewart 26:11
And as we were leaving, the doctor actually came out and was talking to us, and he said, as far as I know, this procedure has never been done this way. And he said, I think I’m going to write a medical journal about it. And I said, that’s great. And he was like “Do I have your permission?” And I’m like, Absolutely. He’s like, I won’t use your name. I’m like, I don’t care, whatever. But he you know, he’s like, as far as I know, this has never been done this way.

Emily Stewart 26:34
And I had mentioned that to one of my siblings, and he said “You know what, if all of this was because at some point down the road, there’s somebody else who needs to have the surgery done this way.” And now they’ve tried it, and it was a success, and they know that, and you know, now they have it as a data point to be able to go “Hey, what we’re doing isn’t working. Maybe we try this other way instead.” You know, yeah, it’s like I hadn’t even thought of that.

Bill Gasiamis 27:01
Why not? I love that, and it’s great. I had a when the blood vessel burst in my head and it bulleted over the three years, they had this theory where they do nothing, they just kind of let it sit, and they monitor the blood vessel to see if it stops bleeding over a period of time. And they kind of make a judgment call. They try and determine whether or not, if it bleeds again, is it going to be a catastrophic bleed, like, what level of bleed? They kind of try and make all these assessments. And then, for us, they kind of determined that the type of bleeding that it was doing was relatively safe.

Bill Gasiamis 27:40
I don’t think they use those words, but they’re the only words I have, relatively safe to monitor. So they monitored it, and then, and then it bled again, and then it bled again. By the third time, is when they made the decision, okay, this thing is going to complete, continue bleeding. But in the meantime, what I didn’t realize, and I think was happening, was, there was a school of thought that said, if we leave it bleed, and the person is, you know, 90% there and happening, and everything is working, and yet the they’re experiencing deficits.

Bill Gasiamis 28:15
They’re not working, they’re not driving, but they are quite well and healthy. Let’s not intervene by opening their head and potentially making matters worse. And it’s like, that’s cool. I get it. So come forward now, 12 years my friend’s daughter, my friend who helped me through my worst time in that situation that happened to me, worked at hospitals. He was a radiographer, and he got me into the best hospital in Melbourne with the best surgeon, pretty much in the country, if not Melbourne, sorry, in Melbourne, at least, if not in the country.

Bill Gasiamis 28:51
And then he would, he would do the scans, and he would then come out and tell me I would I didn’t have to wait for my appointment to learn what my scans looked like. There’s a little bit cheeky, right? But we got over the line on the inside, yeah, I’m never going to mention his name. So then what happened was, 12 years later, I get a phone call from him. His daughter has, the 17 years old, has the same bleed in a similar location.

Emily Stewart 29:22
I heard you’re talking about this in another podcast. That’s crazy.

Bill Gasiamis 29:26
And then it’s like, what is going on? I cannot understand what is going on. Why is this happening? And and now we’re trying to kind of wrap our heads around it. And there, as a couple, his wife and him are trying to work out what’s going on and how they’re going to sort this out. Doctors that they know from their background, they know doctors. There’s people coming around from everywhere, and they have discovered over the last 12 years that an awesome intervention is to enter the the skull and the brain through a small little.

Bill Gasiamis 29:59
Hole and put a tube in there and drain the brain out the blood out. So they went from my version, which was, do nothing, just watch it, and they were trying to do the most non invasive way to kind of handle people like me. So with me, eventually it was surgery. They opened my head, coronavi, the usual stuff, but for her, it was just a little hole and a tube and a device that drained the blood out. So she went from having a catastrophic bleed to having no blood in her head within hours, but still a serious condition, right? She was in ICU, she was in a coma, the whole works.

Bill Gasiamis 30:42
And you see her now, and you think she has some deficits, and she’s experiencing some pain in her leg and all that kind of stuff, I think, on the left side as well. And you see her now and you think, wow, like that. That’s how far they have progressed in 12 years. And it’s simply because somebody would have gone exactly what this guy’s we’re stuck here. We don’t know what to do, but let’s just try. And we’re probably going to cause damage in this other way anyway, so we’ll do this anyway.

Bill Gasiamis 31:14
They got they got an outcome, and I think the same thing would have happened with this other medical situation. They would have said, let’s put a little hole in there. Let’s try and be non-invasive, and let’s see what happens, and monitor this patient. And it’s the blood in a brain hemorrhage. It’s the blood in the brain that causes the damage. It’s not necessarily that the blood vessel has a hole in it. That’s a problem because blood is still flowing through it, but it’s the pressure on and, but it’s too much blood is entering into cavities where there’s no space for it.

Bill Gasiamis 31:47
And then it puts pressure on brain tissue by squeezing up against it, and it causes pressure, and it causes damage. That’s so they’ve worked out this new method. So it’s wild, somebody was patient or zero, like one, like you, somebody was that person. And if that person is ever listening, well, you know, you’ve done an amazing service to the people that come after you.

Bill Gasiamis 32:13
And I feel like that’s kind of what our job is to do us, to take our thing that happened to us and turn it into a I’m going to use the word service, but to use it in service of people that are going to come after us and they’re going to experience what we’re going to experience. You know, that’s the only way I kind of would be able to extend it all.

Emily Stewart 32:34
What is saying that flowers grow best in manure, or whatever that saying is like, that’s really what we’re doing here, is we’re, we’ve been given a whole bunch of manure, let’s grow some roses.

Bill Gasiamis 32:46
I love it. Yeah, I would have been a little bit blunt about it, but I like the way that you did it. That’s cool. So, what happened after you woke up and you were kind of getting better, and then I imagine you realize there was some deficits that you had to deal with. What was that like?

Emily Stewart 33:06
So I woke up on Friday, so surgery was Friday. I don’t exactly know when I woke up. I was in the neuro ICU for a little while. I think they transferred me maybe Saturday or Sunday to a normal wing of the hospital, non-ICU wing of the hospital. But when I woke up, I had complete paralysis on my left side. My speech was very slurred, but I could get it out. You know, like enough, just really, like, I just found a video on my phone of me trying to talk to my daughter, like my daughter was sending me daily, like, get ready with me videos.

Emily Stewart 33:46
And she was like, so today I got up and I went to the gym, and I found this video that I had made for her that was like, I went to the gym too. But today it consisted of trying to move my left hand, you know what I mean? And you can barely understand what I was saying, but I but I was saying something. I had some abilities still to speak. I my recognized my family, which I was so grateful for. I know at one point you woke up and didn’t recognize your wife, right? Yeah, thankfully that didn’t happen.

Emily Stewart 34:14
My husband was terrified of that and and thankfully that didn’t happen. It was really just that left side was really, I couldn’t move it at all. And so Friday, or Saturday, when I woke up, they kept trying to get me to move in the in the nurse, this big burly guy, he would like squeeze my hand, and he’d say, okay, squeeze my hand. And in your brain, it’s really impossible to describe to somebody, but my brain was saying squeeze. And my brain really thought it was happening, right? But nothing was happening with my hand.

Emily Stewart 34:50
And he would just kind of look at me and smile and go, good job, you know, you’re doing so great. And I was like, and then he’d look at my husband like things happening, you know? But we just kept trying, right? Because that’s what you do. And so we just kept trying and trying. And eventually we’re car people. Our family is and so my husband on, I think it was Saturday or Sunday, he got down at the end of my bed, and he started, just like, massaging my leg, and he’s like, if you want to drive our manual transmission car again, you’re going to have to move these legs.

Emily Stewart 35:23
And so he’d like rub my leg, and then he’d say “Okay, now push the clutch. Push the clutch.” And he’d push against my foot. And I would try really hard. And I think it was Sunday, my foot just moved for the first time that, you know, clutch, clutch, push, wow. And as soon as the nurses heard that they were they were all over. They’re like “Let’s Get up. Let’s get going, you know, let’s get walking.” Then I’m like “Okay, I just moved.” So they had me up walking, like, quote, unquote, walking by Monday.

Emily Stewart 35:51
So surgery was Friday by Monday. They had me up walking, you know, four steps, and then I was exhausted and have to go back to bed. And they were like, what’s your goal? And I’m like, I just want to walk to the bathroom by myself eventually. And they were like, well, that’s going to be a while. And I’m like, I know, but let’s try, you know? But I still really hadn’t moved my hand at all. I still had this really, like, tight grip on my hand, and that was really upsetting to my husband. He would come over and just hold my hand and squeeze it and say, come on, just try.

Emily Stewart 36:21
And I was like, I am, you know, in my head, I was like, arguing with them, like, I’m trying. I am trying the best I can. I’m doing everything I can. But the reality was, nothing was happening, and then it was like, Tuesday morning. All of a sudden, he squeezed my hand and he said “Good morning.” And he squeezed my hand, and we actually have it on video, which is really precious. But squeezed my hand and I squeezed it back. And he was like “Yes, that’s it.” And so that was the first, like, any kind of real feel I got in that left hand.

Emily Stewart 36:48
So really, from just Friday to Tuesday, which, in the grand scheme of things, is pretty quick to get some movement back on my left side. And so by Wednesday, they were like, well, let’s get you out of here. And so my husband, they said, she needs to go to inpatient rehab, and so he started Googling, like, best inpatient rehabs in the United States, and one was in Boston or Pennsylvania or something. I don’t know where it was, but the second-best one was actually in Texas. And he was like, okay, we can do this again. Those little mercies, right?

Emily Stewart 37:21
Those tender mercies you see, you see the miracles. And he’s like, there’s one bed left in this place, and it’s the second best place in the US. And so we’re going to leave tomorrow, and we’re going to drive the 10 hours home and stay for one night and then check you in the next day, drive the three hours down to where this place is and check you in the next day. And so that’s what we did. And when we got there, they said, we tell people two weeks to three months, we just don’t know until we do all the evaluations and whatever, and how long you know you’ll be here.

Emily Stewart 37:54
And I said “Well, I got things to do. I’m going to get out of here soon.” And so I ended up staying two weeks in inpatient and just two weeks to the day, and had an amazing experience there with my amazing therapist, one of which, who happened to be from Birmingham, Alabama, which is where my hospital was. And so that was actually a real treat that we had, that that connection, and she was fabulous, and I did speech and occupational and physical and music therapy, trying to think what else they had some like, recreational, you know, games and stuff like that.

Emily Stewart 38:35
But really it was like just all day, every day for two weeks therapy from 8am till dinner time, it was half hour PT, half hour OT, then arrest, then speech, then PT, then OT, you know, it was just all of that. And I think my my therapist, because I had, I regained my mobility quite quickly, and I think it was kind of a treat for them. And so my physical therapist, I would joke, like, she’d pull out this thing, and she’s like, today we’re going to try something new.

Emily Stewart 39:05
And I was like “Well, you do it first, because if you can even do it, then I can do it, because I just learned how to walk last week. So you do it first.” But she did some really hard stuff, like I had. She said, What kind of things do you want to get back to? And I said, we love DIY, like, we do stuff around our home, we remodel our home and things like that. And I really want to get back to that. So like, day three, I want to say three or four. She was like “Okay, today, here’s a ladder, and you’re going to climb the ladder and grab the bean bags off the top and then climb back down.”

Emily Stewart 39:36
You know, this is your PT for today, and then do a push up at the bottom, then climb back up and back down. And I was like, it was exactly what I needed. You know, it was very catered to me, what I needed and what I was looking for. And it was a huge blessing. So after two weeks there, they sent me home, and I did. There’s a great facility here in Dallas, about 45 minutes from our house. It’s called Day Neuro, and it’s kind of like inpatient where they have physical therapy, occupational therapy, speech therapy, and a neuro psychiatrist on staff.

Emily Stewart 40:14
And so you just go and you do all of your therapies there during the day. So we would drive in the morning, the 45 minutes, and do the therapies all day from like nine to three, and then drive home, and then we go back the next day and do the same thing. And they would just have you in this rotation of you go straight from your physical therapist to your occupation, and so on, all day long. And that was really great.

Emily Stewart 40:38
And I did that for two months, and then they were like, well, we’re done with you. We’re you’re basically graduated and so on. You go off into the world. And I was like, okay, and since then, I’ve just been doing around my house and whatever I can do.

Bill Gasiamis 40:55
What was it like getting home? Was there any little setbacks did? Was it a little bit difficult?

Emily Stewart 41:02
I felt really, you know, still, the fatigue was huge. I mean, the fatigue, I think the fatigue is probably my biggest battle. It’s my biggest deficit, in my opinion. Because, you know, sometimes I feel like my body’s up for it, but I do a little bit, like, I said before I was a mom, and I went, 24/7 and I still have that mentality of, like, you can still go, you can do eight loads of laundry today and be just fine.

Emily Stewart 41:30
But in reality, I walk down the hall to my laundry room carrying a basket, and I’m tired, and so I barely get it in the washing machine, and I’m like, I gotta go lay down for a little bit, and so those, I think are the biggest deficits, the most eye opening was, now you gotta do it on your own, figure it out. And I think we’ve done okay. I think I still may end up at some point going back and doing more, maybe speech therapy, just for the cognitive side of things.

Bill Gasiamis 42:08
It’s really early when this thing happened.

Emily Stewart 42:13
It was January. So what are we in 13th months? Yeah, it’s like, 14 months now, which everybody keeps telling me, and I get that. I get that it’s early, because I still feel and see the deficits. I won’t stop till I don’t know that I won’t ever not see them, I actually one of the biggest gifts for me personally has been this podcast, because I found it just a couple months ago, and I was I never, I haven’t done like, therapy or group support or anything, because there, it just really doesn’t exist right here where I am.

Emily Stewart 42:51
I’d have to travel long distance and and so that’s not really an option. I was listening to your podcast, and somebody talked about a like, online support groups. And so I’m going to look into that a little bit. But I just when I found this podcast, it made me feel like, more normal. I don’t know what the words are like, not more normal. But like that, what I was experiencing was not abnormal, you know? Because until that point, I was like, I don’t know a single person who has experienced this, my family is a million times like more supportive than anyone would ever expect, not expect.

Emily Stewart 43:30
But everyone, anyone would ever need, but which is amazing, but they, like you’ve said before, they haven’t experienced it, and I don’t want them to experience it, but they don’t. They don’t quite get it, and so it’s really hard to be like, I’m tired, and they’re like, what does that mean? What does that feel like? And I’m like, not like, I need to go take a nap. Just like, my brain, my head is going to fall off, like, that’s what it feels like, you know.

Bill Gasiamis 43:56
A feeling version and they try and understand. So they compare to their to I’m tired. I’ve been tired too, dude. Yeah, I remember that tired. I wish I had that tired. Like it’s a completely different one I had. We went out to dinner last night, six of us, eight of us, and we were just chatting about different things. And I’m unshaven today, and normally I like to shave for my podcast episodes. It’s the only thing I like to do is just so that I’m cleanly shaven. And I didn’t get around to it yesterday because it didn’t have shaving cream.

Bill Gasiamis 44:33
And I wanted to go buy some shaving cream, and I was going to buy that when we were going out, but we were running a little bit late. I didn’t want to be late at the restaurant, so I just skipped it. And I thought, I’ll buy it this morning, and I’ll shave this morning. Well, I woke up with a massive headache, forget about it. So one of the things that happens to me is one of my deficits. And I don’t know why we got into this topic, but I have a very curious a family member who just asks me all the dumbest questions, but like, they really come from curiosity.

Bill Gasiamis 45:06
And I love that, I love that he asks because then I can try and explain something that I’ve never explained before. And he asked me the question about, like, what shaving cream do you use? I’m like, well, this, this particular brand is going okay, and why do you need new razors? You don’t even need a shave. And then I had to explain to him, I don’t need to shave because of the podcast, the whole story. And I couldn’t believe I was even in this conversation with this guy.

Bill Gasiamis 45:33
He was frustrated. And then he goes, What do you shave with? You shave with a electric shaver, or do you shave with a razor blade. I’m like, dude, like, what are you talking about? I shaved with an electric razor and a handheld razor blade. He goes, that’s different. Why do you use both? And I said “Well, I use both because the electric shaver is more gentle on my face when I scrape on my left side with a razor, it make it hurts like it pulls every single hair follicle and it makes my face hurt.” And it goes “Oh, he goes, have you tried a fresh blade?”

Bill Gasiamis 46:17
It doesn’t hurt on my right side? No idea. Yeah, it’s on my left side because my left side has got a neurological deficit, and what happens is, if I use shaving cream and the electric razor and I trim them and I make it a little bit shorter than they currently are, what will happen is, when I use the razor, it’ll pull less and the shave will be a little less painful.

Bill Gasiamis 46:41
Yeah, that was a 15 minute conversation, just trying to get him to wrap his head around my left side deficits. And then eventually he goes, how it been impacted, and then eventually the only thing he come up with was, well, that’s, that sounds really bizarre.

Emily Stewart 46:59
It’s real, I know. Like, when I when people are like, What do you mean? Like, your left side is numb, like you can’t feel anything. I’m like, No. Like, you know when your arm goes to sleep and it’s starting to wake up and it’s like, pins and needles. I’m like, that’s what my left arm feels like all the time, all the time, just that pins and needles. Like, waking up, I feel like I just need to shake it out really a lot, and that’ll just make it like, wake up, but it doesn’t wake up. And so that people have kind of responded to that, like, okay, that I can, I can feel that.

Emily Stewart 47:28
That’s a very common feeling, I think. And so people are like, Okay, I recognize that, but, yeah, but the tired, I don’t think people really get it. I know one of your guests, said that it felt like being hungover, and I’m not a drinker, and so I’ve actually never been hungover, but I was like, but even that, I could explain that to people like that, that tired feeling of like my head is just wobbly, maybe that hungover, like, I don’t know, it’s hard because you can’t, people can’t understand it unless they’ve experienced it.

Emily Stewart 48:01
So I’ve been really grateful for this podcast to hear some of those things that I’ve felt. And been like, Okay, I’m not the only one. Like everyone else who’s experienced this has felt the same things. And that’s that’s really reassuring.

Bill Gasiamis 48:15
And you can kind of live with a lot of it, like, probably live with it, even though it’s so annoying and frustrating and you always have the comparison. I have my left side to always compare to my right side. And I was wondering, like, if they were both the same, would it be less annoying or challenging or difficult, because then at least my body would be the same everywhere.

Bill Gasiamis 48:43
Whereas now it’s I always have a comparison. Always this side feels like that and and they always compare the two some days, I go through the day without becoming aware of my deficits, and then one day, I wake up in the morning and they’re there all day, and they’re annoying me all day, and I’m doing what you described, like I’m doing this with my hand, trying to loosen and shake it, whatever, and it doesn’t come.

Emily Stewart 49:09
I was in the airport with my daughter. We’d just gotten off of the three hour, I think, like a three hour flight, and I was kind of, you know, you’re slow to move again after sitting for a long time. And so I’m slow to move, and I’m kind of moving, and we stopped at the elevator, and I started just like, stomping my foot. And she’s like, What are you doing? I’m like, I just am trying to get it to wake up. I just needed to wake up, yes, but I don’t know. You don’t want it like you said. You don’t want them to understand, but you also are, like, trying to put it in terms that they can relate at least.

Bill Gasiamis 49:43
I do the same thing with my foot. In the morning when I wake up, I just make sure that it’s on the ground and that I’m stepping and I’m using my ankle like I’m just testing, making sure the ankle is kind of still flexible and working. Otherwise, if I get up, I could, and I have, almost, in the middle of night, fallen a couple of times. So it can be a bit dramatic.

Bill Gasiamis 50:03
Wow. So, you would have been like, quite a stoic human being for kids, you know, all the stuff that you had to do to get through, like, do you? Did you get tested, emotionally, mentally? Did you find times where it really impacted you.

Emily Stewart 50:28
You know, I don’t think there were, like, specific, how do I say, like, long-term times? I feel like I have moments and I feel like it’s important to let yourself sit in those moments like, like today or yesterday. It wasn’t today, it was yesterday. When I woke up, I we had family coming into town last night, and so I was like “We got I had kind of left a few things to do because I’d felt good all week.” And I was like, Okay, tomorrow, I’m going to do all of these things to get ready for them to come.

Emily Stewart 51:01
And then when I woke up and I just felt like garbage, just so fatigued in my left side, my hand was really the spasticity was like, big time in my left hand yesterday, I was like, well, now what? And I have those moments where you just kind of break down, and I think it’s okay. In my opinion. I think it’s healthy to have those moments to let yourself just cry it out, or whatever emotion you feel, just let it out, let it go.

Emily Stewart 51:29
And allow yourself to feel that for just a minute, and then you have to stop and look back and say “Okay, today is whatever, we’ll count today is done because it’s garbage today I may not get anything done.” And my family is so great that when I say today is not a good day, that’s all I have to say. And they jump into action, and they’re amazing. And my husband and my daughter, who is living with us till she gets married next month, and my daughter in law, cleaned the house and just got everything, change sheets, and did all the things that I had planned to do.

Emily Stewart 52:05
And were so amazing. But I think it’s really important to just when you have those moments, give them the minute that they deserve. Because I think it’s okay. It doesn’t show weakness to to cry it out, in my opinion, like let it out, let it go, and let people see that you are still impacted by it, and then pick yourself up. And my mother in law says, pull yourself up by your bootstraps and just get up, get walking, you know, and get on.

Emily Stewart 52:35
And I it’s so important to just, I think you have to just keep that big picture, you have to keep zoom out if you’re just think about the hike. My husband and I used to love to hike when we lived in Arizona, and so there’s this hike that we went on one day we used to go early, early in the morning, like before the sun even came up. And one day we were hiking, and I had a headlamp on because it was too dark. And so I was just looking down.

Emily Stewart 53:04
And I was like, walking, just following where the headlamp was taking me, you know, and trying to see where I was going. And I was so focused on these steps right here in front of me. And then we get little further up, and my husband goes “Oh my gosh, that’s the most beautiful sunrise.” And I was like, I was literally so focused on one foot in front of the other, right in front of me, that I missed this, like, beautiful sunrise that had happened. And so I think that’s kind of what happens even in this stroke recovery, where we’re really focused on our, you know, I can’t do this today.

Emily Stewart 53:36
My deficits are such and, you know, I used to be able to, whatever, instead of, like, kind of zooming out and going, okay, but where was I a year ago? Where was I a month ago? Where was I six weeks, you know, and being able to see kind of a bigger picture, I had an Instagram memory pop up yesterday that said “Today I walked 1.5 miles in the most glorious weather I’ve seen in a long time, and it’s the farthest I’ve walked in my recovery” and it was from a year ago. And at this point, I walk every single day because like you, exercise is important.

Emily Stewart 54:14
I feel like that’s something that really, if I don’t get my walk kind of first thing in the morning, my brain does not connect to my body, and so I never walk now less than a mile and a half. And so I was like, this is one of those moments where you have to zoom out and look at the bigger picture and say, okay, a year ago, a mile and a half was as far as I could go. And I’m sure I was exhausted when I got back.

Emily Stewart 54:35
And now I’m a year later, and it’s the least. A mile and a half is the least amount I’ll do, you know, in a day and so give yourself credit for those you know, those little steps of progress that you make along the way.

Bill Gasiamis 54:51
I love it. So I love your zooming in and zooming out things. So in all of the terrible stuff that was happening during COVID and lockdowns, and all the things we’re seeing on TV and social media and everything. I had this thing where I was trying to tell people to zoom in. So imagine living in Australia and getting updated like I was living in Australia, in Melbourne, the most locked-down city for two years. We were pretty much locked down the entire time, and at the same time.

Bill Gasiamis 55:20
All we’re seeing on all of the screens that we that we use during the day is every other country and all the terrible stuff happening in every other country. It’s like “Oh my God.” Like, this is never going to end. We’re going to be locked down forever, and then it was like, how do we how do I snap myself out of feeling and thinking like that was like, okay, zoom out to that was no good, zoom back in. Forget all about that. Shut it all out, go local.

Bill Gasiamis 55:49
What can I do locally? Okay, I was allowed to, I can’t even believe I’m saying this. I was allowed to walk five kilometers. I was allowed to go past my elderly parents house see them, we were able to connect on zoom with other family members and all that kind of stuff. Like, how’s everything happening locally? There was I could go to the cafe down the road and pick up a takeaway cafe and that coffee and that so locally made it a lot easier, even though it was strange and a lifestyle that I wasn’t used to, because there was so many restrictions.

Bill Gasiamis 56:25
You could still go out into the courtyard, I’ve got a little courtyard, and you go out, you could see the sun, and you could just zoom back in to where it was more contained and more easy for you to focus on, right? And you’re doing that when you’re walking, but you were in a space where what you needed to do was see the bigger picture. You’re just focusing on a step, but there’s a sunrise, and you missed it because you didn’t look up to have a look at it. And it’s like, I need to be focusing up and looking at that. Are you there, Emily? You’re back.

Emily Stewart 57:03
Yeah, there you are. Sorry, I don’t know what happened. I lost you.

Bill Gasiamis 57:05
Yeah, alright, we’re here. So what I was saying was, you’re on the trail, you’re walking, and you need to zoom out because you’re focusing so, you know, hard on one little small part of the entire walk, there’s a whole sunset, a whole sunrise, a whole sky, the clouds, the trees, everything else. And that’s a great game, like, if you can play that, regardless of what situation you’re finding yourself in, you’re going to be able to control how things are impacting your emotional, mental and physical state just by being able to go “Ah, okay.”

Bill Gasiamis 57:45
Now narrowing my focus too much. Need to look at the bigger picture. Looking at too many things out there. I need to narrow my focus again and come close. I love that. It’s a very simple way to control your the way that you’re experiencing things. Now, if it’s okay, I would love to mention your Instagram, because you focus on some topics there that are a little bit different. I’m going to have you share it. And I wonder the big question here is, I wonder whether the adversity that you’ve faced before has helped you with this particular challenge. Tell me a little bit about your Insta.

Emily Stewart 58:24
So my Instagram started, actually, I don’t even know how long ago, maybe three or four years ago I started, goes way back further than that, but when I was eight years old, my hair started to fall out, and it was like falling out in patches, in various spots all over my head. And so my parents took me to, multiple doctors. Eventually they end up finding out it’s something called alopecia, which is just a hair loss General.

Emily Stewart 58:52
Alopecia is just a hair loss disorder. Mine was alopecia areata, which means it falls out in areas or spots, and over time, it’s kind of evolved into, like, where I didn’t have any hair, like when you’re when you’re pregnant, and your hormones are kind of going crazy. My third baby, I basically lost all of my hair, and so three, or maybe it was four or five years ago. I have three daughters, and I have always really kept it under wraps. I wore wigs, this is a wig. I’ve always worn wigs because, you know, I wanted to feel like I looked like everybody else I didn’t.

Emily Stewart 59:31
The last thing I wanted was to draw attention to myself. And I have three daughters, and so I started to feel like, you know, you raise these girls to be strong, independent women and to be proud of who they are, that they have value, and they’re important, and you’re hiding is really what it came down to. And so I decided that I was going to put it all out there. And so I took my wig off and I went to Instagram, and I made an account of pictures of me, you know, and what I had gone through.

Emily Stewart 1:00:07
And my initial purpose was really to share with people who were experiencing what I was experiencing, the hair loss, and give them some tools, like how to buy wigs, like how to find good online, you know, reputable companies to purchase through those kinds of things, and just experiencing life in a way that was not impacted by my hair loss and show my girls and my family and everyone else that like you can still have this thing happen to you and still be something important and still be something special.

Emily Stewart 1:00:40
And so that’s why it started. And then over the last year, as things evolved with me and my stroke and my physical health, my husband came, I had really felt a push to, like, change it like I want to reach a broader spectrum of people who are going through things. Because this is one thing that I went through, and now two things that I’ve gone through, but I want to reach a broad spectrum of people who are going through things and just help them understand that you can go through it and you’re still important.

Emily Stewart 1:01:12
And you still have value period, regardless of what you’re going through, and so I changed it. It was originally owning alopecia, and I changed it to owning adversity, owning.adversity, so that when people come to my Instagram, I want them to leave just having more information, having more light, having more joy and just having perspective, I think, is the most Important thing.

Bill Gasiamis 1:01:39
You know, when I was in a wheelchair for about a month, I kind of became aware that people in wheelchairs aren’t just sitting down or just hanging out. There’s a whole bunch of stuff going on in the background, in their life that I can’t tell or see, you know, but it’s not just, you can’t walk, sit down. No worries you’ll be fine. Just push the thing around. Like, I really became aware of how ridiculously, like, close minded, stupid.

Bill Gasiamis 1:02:17
I was like, I won’t even be I need to be, like, really dramatic about explaining that, and then on your IG like, when I see, when I’ve heard about people with hair loss or alopecia. We have a cousin who lost his hair in his 20s, but he kind of lost male, male pattern baldness, you know, which means he’s got a little bit of hair left, but it’s nothing to do anything with, and he just shaves it off. And there was a time in there was a time in our kind of relationship, in our when we were younger, when we said him, just get a wig, man, like it doesn’t matter, like you’ll be fine.

Bill Gasiamis 1:02:56
You’ve got a nice shaped head, even when you’re bald. That suits you know, we just just rub say dumb things, you know, that kids do to each other cousins and that say to each other. And then I’m looking at one of your photos, where you’re wearing a wig cap, and what it’s done to your head over the entire day. It was irritated, it’s left lines and all that kind of stuff. I mean, it’s not just as simple as, like, just put a wig on and everything’s going to be fine.

Emily Stewart 1:03:28
Yeah.

Bill Gasiamis 1:03:30
And it’s, again, it’s the same moment. It’s the same moment that I experienced when I was in the wheelchair, I’m going “Ah, okay, I get it now.”

Emily Stewart 1:03:44
And that’s my biggest thing is that I it’s important for people like I used to do a lot of like, going to high schools and talking to teenagers in high school groups and talking and I’d like do this dramatic like, whip my wig off and show em, you know, what if everything you thought you knew was a lie kind of thing? And I’d, you know, you look at me and think my life is perfect and whatever, and it’s pretty awesome. But what if this was the reality, and I’d wake rip my wig off and whatever, and it was pretty dramatic.

Emily Stewart 1:04:16
But really, what it comes down to is, like, it’s important for me to make people who are around me feel like they’re important, their value period, like regardless of what you’ve been through, what you’ve done, who you are, who your family is, or your history has, you know shown is that you still are important and you still have value. And so that’s the important thing for me on my instagram is for people to just really feel like they walk away lifted and feeling important and special, regardless of you know where they came from or where they’re headed.

Bill Gasiamis 1:04:50
How many people do we stand next to in the shopping, right at shopping or wherever we are and we. We have just assumed that everything is going fine for them. We don’t really look into it too much, and, yeah, there’s probably, you know, hundreds of things going on for people that we have got no idea about now, we just assume that their response is their attitude or is their personality rather than what happened to them that day or what’s happened to your entire waist.

Emily Stewart 1:05:25
And I tried, I tried, like, growing when our kids were growing up, like they’d come home be like, Jimmy was mean to me on the playground. And I was like “Well, you don’t know what’s going on in Jimmy’s life.” Like, What if his parents are getting divorced, or his sister’s sick or, you know, like, we played these kind of, like, fictitious roles, you know, role, yeah. And I was like, you don’t know what’s going on in somebody’s life. Just because you think you know, just because you think you see what you see, you actually have no idea.

Emily Stewart 1:05:50
And it’s with stroke, it’s really interesting, because those hidden deficits are the hardest thing. I think one of the hardest things for me is that, like, people look at you and go “Well, you’re pretty much back to normal, aren’t you?” And I’m like “I’m pretty much back to figuring out what my new normal is, you know.” But no, I’m not what is back to normal, you know, that’s not a thing, and they just don’t, they don’t understand that.

Bill Gasiamis 1:06:17
But yeah, we’re going to have all the links to your Instagram for people who want to reach out, connect, follow you. Great to do that in the show notes. I really appreciate you soldiering on through your difficult day yesterday, the day before, and making it to the podcast. I really appreciate the chat and thank you for doing the work that you do, the way that you go about things I love, that you’ve been able to kind of turn your adversity into this thing where it supports and helps others. I wish you well in your recovery, because there’s plenty more to come.

Emily Stewart 1:06:55
Yeah. Thank you. I appreciate it.

Bill Gasiamis 1:06:58
That’s the end of another episode of the Recovery After Stroke Podcast, some conversations stay with you. This was one of them. Emily’s courage isn’t loud, it’s steady. It’s in the way she’s talks about fatigue, about rebuilding, about the way life shifts after a stroke, and how identity keeps evolving long after rehab ends. If this episode hit home for you. Let it be a reminder. You’re allowed to have off days, you’re allowed to cry, to rest, to stomp your foot and will it back into life. That’s part of healing, too.

Bill Gasiamis 1:07:31
If you want more, you’ll find support, perspective and hard, worn wisdom. In my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, it’s at recoveryafterstroke.com/book, or just search by name Bill Gasiamis on Amazon. Thanks for showing up for this podcast, and for yourself, we’ll see you in the next one.

Intro 1:07:54
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 1:08:24
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 1:08:48
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Intro 1:09:15
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The post We Pushed Through Stroke Fatigue to Share This With You appeared first on Recovery After Stroke.

An ischemic stroke in the pons, a key area of the brainstem, can feel like life-changing in an instant. Recovery can be complex and emotional, but healing is possible. In this article, we explore what a pons stroke is, why it matters, and how stroke survivors can begin to reclaim their lives with a sense of hope, direction, and support.

The pons is a vital structure located in the brainstem, connecting the brain to the spinal cord. It plays a central role in:

An ischemic stroke occurs when a blood clot blocks the flow of oxygen-rich blood to part of the brain. When this happens in the pons, it disrupts many critical functions. Because the brainstem houses the nerve pathways to the rest of the body, even a small injury in this area can have major impacts.

Symptoms may vary depending on the severity and exact location, but commonly include:

Some patients remain fully conscious and aware but may be unable to move or speak — a condition known as locked-in syndrome in more severe cases.

A pons stroke typically occurs due to:

In some cases, the cause remains unknown and is labeled cryptogenic.

Recovery depends on the extent of the damage and the survivor’s access to rehabilitation services, but most recoveries begin with:

Early medical intervention (often including clot-busting drugs) can limit damage if given within the right time window.

Essential for regaining strength, mobility, and balance. Walking, weight-bearing, and coordination exercises are introduced gradually and often adapted for brainstem-specific deficits.

Focuses on relearning daily activities like dressing, feeding, and writing. Therapy may also include assistive devices and adaptive strategies for living independently.

Many pons stroke survivors experience dysarthria (slurred speech) or dysphagia (difficulty swallowing). A speech pathologist helps retrain these muscles and supports safe communication and nutrition.

The emotional impact of a stroke in the pons can be profound. Survivors may face grief, frustration, identity loss, anxiety, or depression. Access to a counselor, psychologist, or support group can make a world of difference.

Neuroplasticity is the brain’s ability to adapt and rewire itself after injury. It’s the foundation of stroke recovery. With consistent effort and practice, the brain can form new pathways to regain lost functions, especially when supported by:

A stroke may slow you down, but it doesn’t mean you stop growing. Survivors who embrace curiosity, patience, and self-compassion often report greater resilience and personal growth after the stroke.

You don’t need to be relentlessly positive — you just need to believe there’s more ahead of you than behind you.

Every recovery journey is different. Whether you’re in the early stages of rehab, years into recovery, or caring for someone who’s had a pons stroke, know this: support is available. You are not a burden. You are not broken. You are becoming.

If you’re looking for more guidance, you can explore narrated stroke recovery courses, community support, and personal coaching at RecoveryAfterStroke.com.

At 66, Thomas Graham faced a sudden pons stroke. Discover how he rebuilt his life through mindset, rehab, emotional work, and poetry.

Thomas Graham‘s Book “Let’s go for a walk: Rebuilding body, mind and spirit after a stroke”

Highlights:

00:00 Introduction and Acknowledgements

Transcript:

Bill Gasiamis 0:00

Bill Gasiamis 0:31

Bill Gasiamis 0:53

Thomas Graham 1:26

Bill Gasiamis 1:52

Thomas Graham 2:01

Bill Gasiamis 3:02

Thomas Graham 3:07

Thomas Graham 3:53

Bill Gasiamis 4:55

Thomas Graham 4:58

Thomas Graham 5:52

Bill Gasiamis 6:54

Thomas Graham 6:56

Bill Gasiamis 7:00

Bill Gasiamis 7:26

Thomas Graham 7:48

Thomas Graham 8:55

Thomas Graham 9:33

Thomas Graham 10:22

Bill Gasiamis 11:16

Bill Gasiamis 10:57

Bill Gasiamis 11:29

Thomas Graham 11:51

Bill Gasiamis 12:13

Thomas Graham 12:16

Bill Gasiamis 13:04

Bill Gasiamis 13:44

Thomas Graham 14:01

Bill Gasiamis 15:06

Thomas Graham 15:14

Thomas Graham 16:06

Bill Gasiamis 16:49

Thomas Graham 16:51

Bill Gasiamis 16:52

Thomas Graham 17:21

Bill Gasiamis 17:22

Bill Gasiamis 17:33

Thomas Graham 18:05

Thomas Graham 18:54

Thomas Graham 19:38

Thomas Graham 20:38

Bill Gasiamis 21:28

Thomas Graham 21:30

Bill Gasiamis 22:02

Thomas Graham 22:42

Thomas Graham 23:35

Thomas Graham 24:19

Bill Gasiamis 24:52

Thomas Graham 25:16

Thomas Graham 26:07

Thomas Graham 27:05

Bill Gasiamis 27:59

Thomas Graham 28:16

Bill Gasiamis 28:44

Thomas Graham 28:46

Thomas Graham 29:32

Bill Gasiamis 30:06

Thomas Graham 30:25

Bill Gasiamis 30:41

Bill Gasiamis 31:25

Thomas Graham 32:08

Thomas Graham 33:01

Thomas Graham 34:09

Thomas Graham 34:57

Thomas Graham 35:46

Thomas Graham 36:32

Thomas Graham 36:32

Thomas Graham 38:14

Bill Gasiamis 38:44

Thomas Graham 39:22

Thomas Graham 39:46

Thomas Graham 40:52

Bill Gasiamis 41:19

Bill Gasiamis 41:57

Thomas Graham 42:31

Thomas Graham 43:18

Bill Gasiamis 44:08

Bill Gasiamis 44:42

Bill Gasiamis 45:22

Bill Gasiamis 45:54

Thomas Graham 46:25

Bill Gasiamis 47:06

Thomas Graham 47:07

Bill Gasiamis 47:43

Thomas Graham 47:48

Bill Gasiamis 48:37

Thomas Graham 48:37

Bill Gasiamis 48:40

Thomas Graham 48:55

Bill Gasiamis 48:58

Thomas Graham 49:31

Thomas Graham 50:18

Bill Gasiamis 51:07

Bill Gasiamis 51:44

Bill Gasiamis 52:21

Bill Gasiamis 52:57

Thomas Graham 53:27

Thomas Graham 54:03

Bill Gasiamis 54:03

Thomas Graham 54:49

Bill Gasiamis 55:23

Bill Gasiamis 55:49

Thomas Graham 56:11

Thomas Graham 57:03

Thomas Graham 57:41

Bill Gasiamis 58:17

Thomas Graham 58:52

Bill Gasiamis 58:52

Thomas Graham 58:57

Thomas Graham 59:37

Bill Gasiamis 1:00:10

Thomas Graham 1:00:51

Thomas Graham 1:01:46

Thomas Graham 1:02:47

Thomas Graham 1:03:41

Thomas Graham 1:04:35

Thomas Graham 1:05:37

Bill Gasiamis 1:06:47

Bill Gasiamis 1:07:20

Bill Gasiamis 1:08:09

Bill Gasiamis 1:08:55

Bill Gasiamis 1:09:40

Thomas Graham 1:10:18

Thomas Graham 1:10:56

Bill Gasiamis 1:11:22

Bill Gasiamis 1:12:21

Thomas Graham 1:12:49

Bill Gasiamis 1:13:00

Thomas Graham 1:13:07

Bill Gasiamis 1:13:33

Thomas Graham 1:13:40

Thomas Graham 1:14:41

Bill Gasiamis 1:15:32

Thomas Graham 1:15:34

Thomas Graham 1:16:15

Thomas Graham 1:16:58

Bill Gasiamis 1:17:41

Bill Gasiamis 1:18:18

Bill Gasiamis 1:18:55

Bill Gasiamis 1:19:34

Bill Gasiamis 1:20:14

Bill Gasiamis 1:20:52

Thomas Graham 1:21:11

Thomas Graham 1:21:11

Bill Gasiamis 1:22:13

Thomas Graham 1:22:15

Bill Gasiamis 1:22:24

Thomas Graham 1:22:25

Bill Gasiamis 1:23:08

Thomas Graham 1:23:09

Bill Gasiamis 1:23:45

Thomas Graham 1:23:46

Bill Gasiamis 1:24:07

Thomas Graham 1:24:36

Bill Gasiamis 1:24:55

Thomas Graham 1:24:58

Bill Gasiamis 1:25:04

Thomas Graham 1:25:15

Bill Gasiamis 1:25:26

Bill Gasiamis 1:25:58

Bill Gasiamis 1:26:28

Intro 1:26:43

Intro 1:27:12

Intro 1:27:37

Intro 1:28:04

The post How Thomas Graham Rewired His Life After a Pons Stroke appeared first on Recovery After Stroke.

Dr. Lisa Murphy, CEO of the Stroke Foundation, discusses stroke recovery, advocacy, and the support services stroke survivors need now more than ever.

Stroke Foundation

Highlights:

00:00 Dr. Lisa Murphy’s Journey to Leading the Stroke Foundation

Transcript:

Bill Gasiamis 0:00

Bill Gasiamis 0:37

Dr. Lisa Murphy 1:15

Bill Gasiamis 1:17

Dr. Lisa Murphy 1:38

Dr. Lisa Murphy 2:18

Dr. Lisa Murphy 2:42

Bill Gasiamis 3:09

Dr. Lisa Murphy 3:15

Bill Gasiamis 3:23

Bill Gasiamis 4:12

Bill Gasiamis 4:50

Dr. Lisa Murphy 5:11

Dr. Lisa Murphy 5:51

Dr. Lisa Murphy 6:29

Bill Gasiamis 6:58

Dr. Lisa Murphy 7:14

Dr. Lisa Murphy 7:59

Dr. Lisa Murphy 7:59

Dr. Lisa Murphy 9:17

Bill Gasiamis 9:32

Bill Gasiamis 10:02

Bill Gasiamis 10:39

Bill Gasiamis 11:12

Bill Gasiamis 11:44

Bill Gasiamis 12:22

Bill Gasiamis 13:01

Dr. Lisa Murphy 13:18

Dr. Lisa Murphy 13:55

Bill Gasiamis 14:32

Dr. Lisa Murphy 15:04

Bill Gasiamis 15:42

Dr. Lisa Murphy 16:08

Dr. Lisa Murphy 16:46

Dr. Lisa Murphy 17:00

Bill Gasiamis 17:26

Bill Gasiamis 17:59

Bill Gasiamis 18:32

Dr. Lisa Murphy 19:11

Dr. Lisa Murphy 19:46

Bill Gasiamis 20:21

Dr. Lisa Murphy 20:41

Dr. Lisa Murphy 21:15

Bill Gasiamis 21:38

Dr. Lisa Murphy 22:08

Dr. Lisa Murphy 22:49

Dr. Lisa Murphy 23:22

Bill Gasiamis 23:51

Dr. Lisa Murphy 24:13

Bill Gasiamis 24:41

Dr. Lisa Murphy 25:23

Dr. Lisa Murphy 26:07

Dr. Lisa Murphy 26:45

Dr. Lisa Murphy 27:19

Dr. Lisa Murphy 27:19

Dr. Lisa Murphy 28:31

Bill Gasiamis 28:59

Dr. Lisa Murphy 29:25

Bill Gasiamis 29:51

Dr. Lisa Murphy 30:22

Bill Gasiamis 30:52

Dr. Lisa Murphy 31:19

Dr. Lisa Murphy 32:01

Dr. Lisa Murphy 32:27

Bill Gasiamis 32:43

Dr. Lisa Murphy 33:10

Dr. Lisa Murphy 34:01

Dr. Lisa Murphy 34:30

Bill Gasiamis 34:48

Bill Gasiamis 35:17

Dr. Lisa Murphy 35:39

Dr. Lisa Murphy 36:14

Dr. Lisa Murphy 36:54

Dr. Lisa Murphy 37:30

Bill Gasiamis 37:55

Bill Gasiamis 38:17

Bill Gasiamis 38:52

Bill Gasiamis 39:27

Bill Gasiamis 39:59

Bill Gasiamis 40:44

Bill Gasiamis 41:11

Bill Gasiamis 41:50

Bill Gasiamis 42:12

Dr. Lisa Murphy 42:28

Dr. Lisa Murphy 43:04

Dr. Lisa Murphy 43:44

Dr. Lisa Murphy 44:17

Dr. Lisa Murphy 44:43

Bill Gasiamis 45:00

Dr. Lisa Murphy 45:31

Dr. Lisa Murphy 46:07

Dr. Lisa Murphy 46:35

Bill Gasiamis 46:53

Dr. Lisa Murphy 46:56

Bill Gasiamis 47:10

Dr. Lisa Murphy 47:18

Dr. Lisa Murphy 47:55

Bill Gasiamis 48:06

Bill Gasiamis 48:34

Bill Gasiamis 49:15

Bill Gasiamis 49:55

Dr. Lisa Murphy 50:11

Dr. Lisa Murphy 50:39

Bill Gasiamis 50:53

Dr. Lisa Murphy 51:06

Bill Gasiamis 51:07

Dr. Lisa Murphy 51:14

Bill Gasiamis 51:19

Bill Gasiamis 51:53

Bill Gasiamis 52:14

The post Dr. Lisa Murphy on Stroke Recovery, Advocacy, and a New Vision for Survivors appeared first on Recovery After Stroke.

When you hear Lorenzo Price’s voice, you might not immediately realize how much he’s endured. A talented tattoo artist and musician with a deep love for family, Lorenzo had his life turned upside down by something he didn’t even know was inside his head — an arteriovenous malformation (AVM) in his brain.

His AVM ruptured. But not before years of misdiagnosis, disbelief, and emotional trauma.

Lorenzo’s symptoms didn’t start overnight. He’d been struggling with episodes of vision loss, migraines, and intense fatigue. Each time, doctors would send him home. Sometimes with nothing more than a pat on the back and a suggestion to drink more water. Other times, with medications that made things worse.

And then came the stroke. A major one.

By the time they found the AVM — hidden deep within his brain — the damage was done. He’d lost much of his vision. His ability to work was gone. And his home, relationship, and sense of self-worth began to unravel.

What makes Lorenzo’s story so powerful is that he kept going. When everything in his world fell apart, he leaned into his faith and started looking inward. That’s where the recovery truly began.

He underwent radiation therapy to shrink the AVM, knowing it might take years to fully work. Along the way, he battled seizures, financial collapse, and the emotional grief of not being able to do what he loved — tattooing and visual art.

But his creative spark didn’t fade. It just found a new outlet.

Despite left homonymous hemianopsia (a type of vision loss), Lorenzo began reclaiming parts of his life. Music became his therapy. Storytelling became his service. And showing up for his daughter became his mission.

Lorenzo reminds us that stroke recovery isn’t linear. It’s a deeply emotional and spiritual journey, especially when you’re recovering from something as misunderstood and complex as a brain AVM.

He still lives with limitations but he’s not defined by them.

This conversation isn’t just for those recovering from AVM. It’s for anyone who has felt dismissed by the medical system… who’s been told “its all in your head”… who’s lost more than they thought they could handle and still managed to keep going.

You’ll hear Lorenzo speak openly about:

• Losing his vision — and what that taught him about seeing life differently
  
• Rebuilding from rock bottom — emotionally, financially, and spiritually
  
• What radiation therapy for AVM is really like
  
• Why having faith (in any form) helped him find a new path
  
• The power of being heard, and why he’s now telling his story to help others
  

If you’re looking for hope, clarity, and connection, especially during a hard stretch of your stroke recovery, this episode will speak to you.

From musician to stroke survivor, Lorenzo Price shares his powerful AVM of the brain recovery story and how he rebuilt life after loss.

Instagram
Facebook
The man who saved my life

Highlights:

00:00 Lorenzo Price’s Introduction and Background
03:15 Transition to Tattooing and Music
08:03 Health Issues and Initial Diagnosis
15:36 Medical Journey and Diagnosis Confirmation
20:18 Finding Relief in Diagnosis and Facing Relationship Loss
32:36 Impact on Personal and Professional Life
40:32 Lorenzo’s Extreme Acceptance: Choosing Strength After Stroke
52:45 Faith and Community Support
57:56 Challenges and Coping Mechanisms
59:11 Future Plans and Aspirations
59:37 Advice for Stroke Survivors
1:00:25 Conclusion and Final Thoughts

Transcript:

Bill Gasiamis 0:00
Welcome everyone before we dive into today’s powerful conversation, I want to thank you for being a part of this incredible Recovery After Stroke Community. Your support, whether it’s by sharing the podcast, leaving a review or simply tuning in each week, makes a huge difference. Together, we’re creating a space where stroke survivors, caregivers and allies can feel seen, heard and supported. Since 2015 I’ve been personally covering all the costs of producing the podcast to make sure stroke survivors and their loved ones can access helpful and free recovery resources.

Bill Gasiamis 0:36
And last year, I opened up the doors for those who want to support the show through Patreon. If you found value in these episodes and you want to support what I do, head to patreon.com/recoveryafterstroke. Also a quick reminder about my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, it is available on Amazon. It’s become a helpful guide for many stroke survivors and families, especially during the harder parts of recovery.

Bill Gasiamis 1:07
You can find it by searching my name, Bill Gasiamis or going to recoveryafterstroke.com/book. Now, I’m really excited to introduce today’s guest, Lorenzo Price. Lorenzo is a musician, a former tattoo artist and a stroke survivor whose story is as raw as it is inspiring. After an AVM rupture caused vision loss and delayed diagnosis, he’s been rebuilding his life through faith community and resilience.

Bill Gasiamis 1:37
In this conversation, Lorenzo opens up about navigating tough emotions, adapting to new challenges, and holding on to creativity and hope even when things got dark. Let’s jump in. Lorenzo Price, welcome to the podcast.

Lorenzo Price 1:53
Thank you very much for having me.

Bill Gasiamis 1:55
My pleasure. Thank you for being here. I wanted to get a bit of a sense of what life was like before stroke. Tell me about Lorenzo, what he got up to, how he went about life before stroke.

Lorenzo Price 2:09
Yes, before my stroke, I was a body piercer and a tattoo artist and a musician full time, that’s what I did. So I heavily relied on my vision and my sense is that way I worked downtown in Cartersville, where I live, for a really great tattoo shop. Things were going awesome, things were going really well, and then boom, all of a sudden, I woke up. There’s really, like, no kind of lead up to it. It just sort of happened.

Bill Gasiamis 2:41
Wow. How old were you?

Lorenzo Price 2:44
I’m 34 when it happened, I was 34, I’m 36 now.

Bill Gasiamis 2:49
So that’s a pretty unique combination of things to be employed in or to be doing. So how did that all fit into your daily life? Tattoo artist, piercer, which I imagine happens at the same place, roughly at the same time of day, and then musician were tell me about like, how one of your days would unfold, or one of your weeks.

Lorenzo Price 3:15
Well, mostly I’d go check into the tattoo piercing shop, you know, around 11, and I’d be there until eight o’clock at night most days. Um, on my off times on if I didn’t have anything to do on the weekend, I would be on a gig playing music. I actually did that for a lot longer than I did the tattooing and piercing. I was a musician for the majority of my life. The tattooing and piercing thing came later after COVID.

Bill Gasiamis 3:44
What kind of instrument do you play?

Lorenzo Price 3:49
I play guitar and piano and bass and drums.

Bill Gasiamis 3:57
Fair enough. You’re a little prolific when it comes to music, by the sound of it.

Lorenzo Price 4:01
I love it.

Bill Gasiamis 4:04
So your tattoo work? Did you find that you were very skillful in being a tattoo artist, out of the blue. How did you come into that? Why did you move into that part of the role?

Lorenzo Price 4:23
I was always an artist my whole life. Since I was a little kid I was into drawing. And when COVID happened and I moved up, back up here to Georgia I’m from Fort Myers, Florida, where I was gigging most of the time, I happen to know some people, and he needs somebody to help, and I just happened to be that help, I started piercing. After a while, I needed a tattoo, and I asked him for one. When he asked me for the image that I want to tattoo, I gave him an image, and it was a drawing of mine.

Lorenzo Price 5:03
And he asked me, he said “Who drew this?” I said “Oh, I did.” And he was like “Wait a second” like, you know he’s known me sometimes, like 13. He’s like “You’ve been able to draw this whole time?” And I was like, yeah. He said “Why need a new tattoo artist?” He’s like “Would you like to apprentice for that?” And so I did, and it came pretty naturally, pretty easy. It was great. I really, really loved doing it. Loved piercing, loved working on tattoos. Loved music, too.

Bill Gasiamis 5:38
What’s it like going from a paper drawing, and then using the ink and the tattoo gun to put the image on a skin. How do you transition to that? Is it easy?

Lorenzo Price 5:51
It was pretty easy, honestly, but you know it was easy because I guess I came from a musical background, so I knew how to practice. So I would practice, like, 10 hours a day, every day, until I just got it down. But when it’s on, on regular skin, it’s just a matter of having to stretch the skin versus a piece of paper that’s always static.

Bill Gasiamis 6:18
Are there people who you’ve tattooed to have a not so good tattoo, that had to be a guinea pig.

Lorenzo Price 6:26
Yes, most of that, most of that is me. My legs are totally covered in Guinea Pig tattoos, and a couple of friends my mom included.

Bill Gasiamis 6:38
Wow, that’s a lot of trust in somebody who isn’t expert at tattooing it.

Lorenzo Price 6:44
Yeah, exactly.

Bill Gasiamis 6:46
Fair enough. Tell me a little bit about that transition from working as a two tattoo artist a musician on the daily like, what happened when you finish your eight hour shift and then go and play a gig.

Lorenzo Price 7:02
Yeah. So it would, it was a mixture of things, I also taught music. So sometimes I would teach early in the day, so I could, you know, I might be teaching in the morning, and then do my piercing stuff or tattooing stuff in the afternoon, or an afternoon gig, and then go to a late night gig. So my days were very full. For most of my life, I just kind of woke up and got going right away and didn’t stop until I didn’t have any gas left.

Bill Gasiamis 7:31
Well, you are properly busy, man. What kind of genre of music did you guys play?

Lorenzo Price 7:37
Honestly? Like, I know you probably hear this a lot, but all genres, I love jazz and funk and rock and blues, and I love it all. I went to the Atlanta Institute of Music. I studied music there and got my Associates there, and I just learned to love all styles and music.

Bill Gasiamis 8:00
So was it a band that you filed?

Lorenzo Price 8:03
Some of them were I had a bunch of different bands. Majority of them were covered bands. That’s where the money was. I had a family to take care of this. So, but yeah, a lot of the couple of the bands are mine. Then I would join a lot of other people’s bands and just be like, utility guy for them.

Bill Gasiamis 8:26
Hence why it was really good to have that ability to play multiple instruments.

Lorenzo Price 8:33
Yes, and like, have a knowledge for the different genres and like, how they work together.

Bill Gasiamis 8:38
Yeah, fantastic, man. Can you describe the moment when you started to realize there was something wrong with your health?

Lorenzo Price 8:49
Yeah, I can.

Bill Gasiamis 8:50
Lorenzo story is a reminder that resilience doesn’t mean being fearless. It means moving forward, even when it’s hard. Let’s take a quick pause, and if you’ve been finding value in these kinds of conversations, here’s how you can help keep them going. The podcast exists to create a space for stroke survivors and their families to feel heard, encouraged and uplifted.

Bill Gasiamis 9:16
If it’s been helpful to you, consider supporting it through Patreon, you’ll be joining a group of people who believe in the power of lived experience and recovery. You can learn more at patreon.com/recoveryafterstroke. Now, let’s get back to Lorenzo as he shares more about rebuilding identity, leaning into faith and finding new purpose after stroke.

Lorenzo Price 9:41
So in 2000 it actually the moment I realized there was something wrong with me was in 2015 which was years before my hemorrhage happened. I was on a cruise line shift with my family, and I went to go dancing, and the next thing I know, I woke up with the nurses and paramedics that were on the shift line, like they told me they know what happened, that I just, like, kind of freaked out.

Lorenzo Price 10:22
And they had no explanation for it, but they said that they had, they had given me a shot to put me to sleep becausethey couldn’t, didn’t understand what was happening.

Lorenzo Price 10:32
My family didn’t either, needed to die like I don’t even remember this incident, but I just remember waking up and having no idea how I got where I was or what had happened, or where my family was, or anything. And then they just told me what happened. They told me that the night prior, I came knocking on my dad’s room, and he said that he thought that I had a nervous breakdown, so that was screaming and yelling and like, totally like that. He couldn’t understand what I was saying.

Lorenzo Price 11:11
And that’s when they called the people, and they gave me a shot and put me to sleep that night. But after that, when we got back home, I started having these really weird waves, I guess I would call them. That was happening on my right side of my face, waves on it was like, I don’t know how to describe it. It kind of like the way it culture would feel, but more internal, and it would it sort of like pulse this right side of my temple, and then it would vibrate, and then have this wave that would go down my whole body.

Lorenzo Price 11:55
And that kind of got worse and worse over years and years and years when I got to the neurologist here in Georgia, it was at Kaiser Permanente. They gave me an MRI and a CT and but, you know, not just like a regular CT and MRI no contrast or anything, no angiogram, and they just said that there was nothing wrong with me. And so that turned into them sending me to a psychiatrist because they thought I had psychological issues, that this was all something I was making up in my mind. But I knew it, and I went to the doctors over and over and over again.

Lorenzo Price 12:39
I went to what doctors in Cape Coral, doctors in Woodstock, Georgia. I went to doctors in Kennesaw in Atlanta. And time and time and time again, I was turned away. Like they would always say basically the same thing to me, we can give you something for your anxiety, but like, there’s nothing wrong with you, they would say. But I could feel it. I knew that there was something wrong with me, like and I kept requesting a neurologist over and over and over again, and they kept sending me to different doctors. You know, first it was the psychiatrist.

Lorenzo Price 13:21
Then the psychiatrist sent me to the neck and spine specialist. The neck and spine specialist sent me back to the psychiatrist who saw me have an episode in her office, and she got me hooked up with the neurologist. And that was in September of September of 2021, I saw a neurologist finally. So it took like six years from the to get me to one. That was like taking me seriously. His name was Doctor Pearlstein, and he told me if there’s that he believed there was something that had some kind of mass in my head that I was having.

Lorenzo Price 14:07
He saw the videos and saw me having episodes, and said that I was having seizures. And that’s somebody my age with no history. Shouldn’t be that we need that. We need to go get these tests run at Emory in Atlanta. But shortly after finally seeing him and getting these tests set up for me, unfortunately, my wife at the time, she with me at the doctor, and found out, and kind of just threw me out of my home and canceled my bank account and canceled my health insurance so I couldn’t go back to the doctor.

Lorenzo Price 14:51
And like, it was madness, and, you know, I tried to go back afterwards, but didn’t have an insurance that. More so like they wouldn’t take me. But yeah, so it was kind of a really exhausting situation. Right before I had my hemorrhage, I finally got set up for all the scans that was supposed to get set up for my family was going to pay for it. My mom was and it was just like, too late that point, dude.

Bill Gasiamis 15:36
Okay, let’s unpack this a little bit. You know there’s something wrong, you’re feeling it. You’re experiencing it, they tell you to go and see a psychiatrist. What is it like to be at a psychiatrist when you know there is something wrong physically in your body, and they’re trying to do the psychiatric thing? What is that like? That experience like, what the hell happens in a consultation of that nature, when you are certain that there’s something wrong with you and they’re telling you, it’s all imagined.

Lorenzo Price 16:20
You know, it feels like the ultimate dismissal, like, just like I’m being betrayed by the doctor and medical system. That’s what it felt like, because I knew it like, I knew it so hard, like, and I can never quite explained what I was feeling to people or what was happening, but like, they always boiled it down to that I was anxious, and I would tell them again and again, I saw four or five different psychiatrists that kept getting the arguments with them, you know, and I would tell them the same thing, like, there’s something wrong with me, like I need to see a neurologist.

Lorenzo Price 17:01
And again, I guess maybe my demeanor, because I was getting upset, maybe they agreed with them. I’m not sure why, but it was the most frustrating experience of my life and and it led you know it never the answers never got solved, until catastrophe happened. And actually spoke to my vascular neurologist recently about this, because he wanted me to do a testimony at Sea Time Memorial Hospital, who I’ve heard, one of the people on your podcast, I think he was getting her what happened? He had, like, a steroid issue or something, and gave him a stroke.

Lorenzo Price 17:41
Yes, I believe he so it says same hospital and Dr. Thomas Devlin up there is incredible, because after years and years and years and years and emergency room visit after doctor visit of different doctors like I can’t even explain to you how many doctors I saw to try to figure out what was wrong with me. He literally just did what you’re doing right now. He just listened to me. I told him what was going on, how it happened, and he said, you’re 34 years old.

Lorenzo Price 18:15
And he said “Don’t lie to me.” He said “Do you do drugs?” I said “Dr. Devlin, on my children, I do not, I’ve never done any drugs” I said “Except for marijuana.” And he said, marijuana didn’t do this to you. He said, a 34-year-old with no history of drug use or any head trauma, anything. He said, there has to be. He said “You have an AVM.” He said, that’s what you have, and you need to get an arteriogram done. Has anybody given you an arteriogram ever?

Lorenzo Price 18:48
I said “No” and he said, that’s what you need. He said “Because I’m telling you, that’s what you have.” And they gave me an arteriogram and that’s what I have.

Bill Gasiamis 18:58
Wow, man.

Lorenzo Price 18:59
Like, he was like Dr. House, the way he just, like, listened and like, just put the puzzle together. And just told me, before anybody ran another test on me, just told me exactly what it was he knew.

Bill Gasiamis 19:14
Perfect episode of Dr. House.

Lorenzo Price 19:16
Amazing, yeah.

Bill Gasiamis 19:19
Come in, weird guy presenting with all this stuff. Everyone thinks he’s crazy. I know. Let’s just ask some strange questions. Yep, it’s definitely that solve the problem. 30 minutes, we’re done, go home. Everyone’s happy.

Lorenzo Price 19:32
Yeah, it was wild. Dr. Thomas Devlin, like, he saved my life. I love him. Like, yeah, I couldn’t believe that. Like, he just put it together that quickly after, like, all of these years and all like, you wouldn’t believe the losses that have come from this.

Bill Gasiamis 19:49
So when you got the result, when Dr. Devlin kind of said what he said, and then it was confirmed. Was that a blow to you, or was it a relief? Or some kind of.

Lorenzo Price 20:01
It was the absolute biggest relief of my life. It was the biggest relief of my life because I have lost my family and friends and my home and everything over nobody believing me.

Bill Gasiamis 20:18
But you’ve got a serious health issue, your life is at risk. You’ve got a blood vessel in your brain that could burst any time. And you reckon that was a relief getting that news. That’s insane.

Lorenzo Price 20:30
It was a relief. It was an absolute relief, kind of like you always say it a stroke. I was one of the best things that’s ever happened to you, right? Like knowing like this happening to me, and knowing that I wasn’t contained, that there really was something wrong, and that they were able to find it like it was, it just felt like the weight of the world came off my shoulders.

Bill Gasiamis 20:54
That would have been heavy, and that whole other people not believing you would be what I just imagined myself going through would be crippling, like not being able to convince somebody that you’re completely right would be crippling your emotionally, mentally, and it will be impacting negatively on you physically, and it wouldn’t be helping the AVM. It would be making matters worse in your brain as well, right?

Bill Gasiamis 21:23
So absolutely, what if you can, if you’re happy to talk about and comfortable talk about it, what was the catalyst that meant that your relationship with your wife ended? How did that come about? Was this stuff before stroke that was sort of still bubbling away that led it to end, or was it something else?

Lorenzo Price 21:45
It was, ever since that first seizure I explained to you in 2015 we just sort of had a steady but slow decline from there, like she just didn’t, she wouldn’t believe me, and I couldn’t trust her anymore. I couldn’t trust somebody who couldn’t believe me like, I was her husband, and just that’s coming together. And when she told me to leave my home, I was just absolutely wrecked like I couldn’t. I just couldn’t take it anymore. I couldn’t take like this is how far nobody trusted me.

Lorenzo Price 22:29
Nobody would give me the benefit of the doubt. Even my wife at that time, my family members, some of them you know me and my dad, have had a tough time because of it, you know, my little brother’s the best, and but it’s caused a lot of tension. Yeah, it sounds like.

Bill Gasiamis 22:53
Now, it sounds like a betrayal of something. Can you pinpoint the betrayal. What it was that you felt isn’t even the right word betrayal. Is it something else? How would you describe that situation? Because I have deficits that are not visible, which sounds like you might have two. That means that people don’t know that I’ve had a stroke. They don’t know how serious my condition is, and they’re not betraying my relationship with them, their trust, their belief in me and my story, what I’m saying, but they can’t connect the dots. You know, stroke doesn’t look normal.

Bill Gasiamis 23:36
You look normal, bro. I kind of have this feeling of forever, feeling the real word is misunderstood, but it goes a bit deeper to your core, like it feels like I’m also, you know, not believed, even though that’s not really true. So how was it for you? Was it betrayal? Was there another word that you would describe that kind of breakdown in those relationships?

Lorenzo Price 24:05
You know, for me, honestly, betrayal feels like the only right word, because, like I’ve done, I’m not a Turkish person. Nobody is, but I’ve done my best to be the best that I can to everybody in my life, my whole life. So when these things started happening to me, and when Doctor Pearlstein finally said “Yeah, you’re having seizures.” I think there’s something in your mind, in your brain, and still, nobody believed me.

Lorenzo Price 24:35
I just felt like I deserve the benefit of the doubt, like I’ve been good, like I haven’t harmed anyone, and nothing I’m doing is harming anybody. Like, why won’t any my family believe me? My own dad wouldn’t believe me, my own wife wouldn’t believe me that there was something wrong. They both thought that I was losing my mind, that I was that had some sort of serious psychiatric condition going on, yeah, man, to me, it betrayal seems like the only right word.

Bill Gasiamis 25:11
Yeah. I’m sorry that you had to go through that, honestly am. I feel like it should have never have happened. But I think it stems from ignorance more than anything else, and people’s inability to grasp a concept that they can’t see. I mean, it’s almost like being an atheist. You can kind of understand why an atheist is an atheist?

Bill Gasiamis 25:42
Well, you telling me about God and all those kind of things, but I can’t see, touch it, feel it, whatever, and therefore I choose not to believe in a being that I can’t touch, see or feel, that is supposedly controlling my life and making my life better or making somebody else’s life worse or whatever.

Bill Gasiamis 25:59
Like you kind of get the atheist discussion, and this kind of feels like similar they can’t touch, feel, see, they just see you. They judging you, on your behavior, on your attitude, on your frustration, on the way that you’re interacting with them. And they’re making a call, and they’re feeling like, perhaps you’re deceiving them, and they’re going, This dude’s being deceitful, and he’s doing all that kind of stuff, when at the same time, you’re feeling that you can see how quickly and easily a wedge can be brought between two people.

Lorenzo Price 26:39
Absolutely like it was, it impressed me, and I was living it like I feel like I couldn’t believe it, like I was people my family are calling me to drug addicts. All of a sudden, you’re on drugs. I know you’re on drugs, and I’m not, and it, yeah, it is ignorant. You’re absolutely right about that.

Bill Gasiamis 27:08
And then you’ve received a diagnosis. Does what’s the next step? So what happens after that? Now you know what the what’s going on, the medical intervention starts to kick in. What happens after the diagnosis?

Lorenzo Price 27:22
So after the diagnosis, which was a year after my hemorrhage, after that, Dr. Devlin set me up to go and meet a guy named Dr. Cleary at Erlanger. He’s a radiation oncologist, and they performed an SRS on the AVM itself to try to SRS, a cyber knife radiation treatment, basically, like a targeted X rays, like super high dose X rays. I think I’m not exactly, I’m not 100% sure, but it’s something along the lines of that, yeah.

Bill Gasiamis 27:57
It’s laser, it’s a laser radiation therapy that’s designed to change the DNA of the AVM to kind of make it like dissolve or dissipate or stop working and disappear.

Lorenzo Price 28:13
That’s the whole idea, that was in last August. So it’s been almost a year since I had the SRS done.

Bill Gasiamis 28:27
And then what happened? How did that continue to evolve?

Lorenzo Price 28:34
So since then, things have, actually have kind of gotten a little better. You know, my doctor, Dr. Devlin, put together a great team of doctors for me. So I’ve got a great epilepsy Doctor who takes care of my seizures, to my seizures of like, I’ve had one now since May. So, I’m like, that’s a long time for me. Like I’ve had a seizure at least May. So is it May? June, July, August. So, yeah, like 10 months now, because I’ve had a seizure, and I feel like I’ve been doing great since then. Yeah, I’m still in physical therapy for my legs that fallen a couple of times.

Lorenzo Price 29:22
And I still do some speech therapy for, like, the way that I read out loud, I read out loud kind of funny. There’s like, some kind of weird connection there, I feel like I can hold, like, a fair conversation, but kind of a little bit of an issue reading things out loud. They told me back in that, but it’s just been your follow up, follow up scans, follow up with the doctor, and it’s just been kind of that, like every three months or so. So I see Dr. Devlin, and then I see Dr. Gaski, who actually did the arteriogram on me, who’s also an incredible man and doctor.

Lorenzo Price 30:12
He explained it to me the best way that I think anybody could have, because he came to me after my arteriogram with a giant iPad to show me what the AVM looks like. And he said, you have an AVM in your brain. And I just told him, so you got to go tell my mom. You got to let her know like she’s downstairs worried that he said I saw her hours ago, but then we started talking about it. And I said, so what, you know, what is this thing? He explained how it’s a congenital malformation, something you’re born with.

Lorenzo Price 30:50
And I was like “No” I told him. I was like, you know, I exercise like I eat fairly well. I don’t understand. And he said “Lorenzo, no matter where you were, no matter what you were doing at that moment in time, this is always going to happen to you, had you not had some intervention prior.” And like, I don’t know that made me feel better. For some reason.

Bill Gasiamis 31:15
It’s a small consolation because you weren’t responsible for causing it. I like that, that’s a good thing, man. I mean, I was partly responsible for making the environment around my AVM worse. So I smoked, I drank, I worked too many hours, you know, it’s just stress head, all sorts of things, and I kind of created the perfect storm for it to pop, you know, or to bleed, or whatever. But the reality is that an AVM, for a lot of people, and often, this is what’s weird. They can occur anywhere in your body.

Bill Gasiamis 31:54
They don’t just occur in the head. But I’ve never come across, or heard of anyone having had an AVM that bled in a different part of the body, skin, muscles. You know it’s possible for them to occur anywhere so and most of the time they’re benign. They just sit back, chill out, do nothing. Most people who have them won’t know they have them unless they play up, and they tend to play up at middle age between, say, 35 and 45 the amount of people who I’ve interviewed whose AVM has played up somewhere around the age of 40 it’s ridiculous.

Bill Gasiamis 32:36
It’s a pattern that continues to evolve. And then there are a few people who have met whose AVM caused problems way earlier than that. So it’s a small consolation prize, when somebody says you didn’t do this to yourself. It would have happened anyway. It’s random.

Lorenzo Price 32:59
Yeah, you know, it like all the bad news felt like good news, yeah.

Bill Gasiamis 33:04
To me, everything’s upside down and all over the place. So what was life like after stroke? So before stroke, everything’s busy. Jobs, you know, morning to the end of the day, gigs, tattooing, piercing, the works.

Lorenzo Price 33:23
Yep. I’ve been with my children.

Bill Gasiamis 33:25
Yeah, your children, your wife. And then the contrast begins with the relationship breakdown. How did your interaction with your kids change?

Lorenzo Price 33:42
Changed immensely. I’m not as capable as I was like, so I can’t drive to go and pick them up like I used to be able to. There’s a lot of things that I’m being held back on that, unfortunately I’m not getting help. On the other side, like they’re their mother told them that I don’t have seizures, that I am not partially blind, and then they believe that, they believe that, that was the reason why I wasn’t coming to see them.

Bill Gasiamis 34:21
Okay, I hate it when they do that to kids. Such a terrible thing to split kids from their parents in any way. Like, it’s ridiculous.

Lorenzo Price 34:35
It’s horrible, like, it’s absolutely horrible. They don’t, children don’t deserve that.

Bill Gasiamis 34:40
No.

Lorenzo Price 34:41
I’ve done my best to like, remedy as much of that as I can. And when I have them like we I basically play like, speech therapy games with them and brain games with them to keep them occupied and have fun. So like and I try to teach them how to use, so I gotta walk with a walking stick, almost I can’t really see, I have this thing, it’s called left, this is big. It’s called left homonymous hemianopsia is what it’s called from the damage to my right occipital parietal lobe region.

Lorenzo Price 35:20
So, all the information that’s coming into my eyes, you know, left doesn’t keep you like, so it’s like there’s nothing. It’s not black. It’s just like there’s nothing there and it’s really strange. But I’ve just kind of, when I have them now I give them their own little sticks. So here, use the stick. Come walk with me, and I try to make it fun so, like, I don’t want this to be like a tragedy to them.

Lorenzo Price 35:46
I try to make it so, like, hey, let’s learn something, you know, that I’ve talked to them all about seizures. I’ve taught them all about blindness, I taught them all about strokes. And I try to keep them, you know, as informed as possible, but not scared.

Bill Gasiamis 36:01
I like that. Yeah, that’s cool, man, and work situation is totally different than what it was before.

Lorenzo Price 36:08
Now, yeah, I used to work 18 – 20 hours a day. Now, I’m at home. I’m disabled, like, can’t drive, I can’t do, I can’t really do it anymore. The vision deficit is the absolute worst of it. It just makes things incredibly challenging. Like even centering myself on this panel was difficult, like, it’s that with the seizures, and it’s just, it’s been a lot.

Bill Gasiamis 36:45
Yeah, is your vision blurry? How is it other than the area, other than that part that’s missing that you don’t have anymore, the areas that you do have? What’s that vision like?

Lorenzo Price 36:57
It’s blurry, like, I’ve got some lenses that help a little bit, but not great. I’m supposed to get prisms soon. Prism lenses soon, from a neuro optometrist up in Chattanooga, so I’ll be doing that soon, and they think that might help some of that. I’m not really sure how they work, yeah, but it’s might help some of this left stuff, but the center, even what I can see is still blurry. It’s not sharp. It’s kind of like you’re like, I can see, like, the silhouette of your face right now. Like no like, no details.

Bill Gasiamis 37:42
I’m a good looking guy, mate.

Lorenzo Price 37:44
I’m sure.

Bill Gasiamis 37:48
You wouldn’t know if I wasn’t, but I am, I really am.

Lorenzo Price 37:52
I believe you. Yeah, I’ve got my eyes are blurry because not only do they have this brain damage in the occipital region, and my optic nerves from the intrathenial pressure got squeezed, yeah, and then this eye hemorrhaged also. So I had a hemorrhage in my right eye, and my optic nerves got damage, and then sorted my lobes back here. So just, but it’s like you said, it’s kind of I carry myself in a way that, like nobody really knows, unless I tell them, yeah.

Bill Gasiamis 38:33
I just love that about you. I love that about you, but it doesn’t sound like you’re doing the I’m holding it all in and not talking about a thing which is different. You know, some people don’t share, don’t say so that they appear normal, or whatever that means, you know, to people, so that no one knows. Whereas you’re kind of like, I’m just going to go about doing things the way I need to do things to get things done, and then if the situation necessitates it.

Bill Gasiamis 39:03
Well then I’ll elaborate on what’s going on for me, why I carry a cane, and why I’m struggling with my vision or something. I love that approach. It’s kind of just getting on with business, by the sound of it.

Lorenzo Price 39:15
Yes, thank you. That’s exactly what it is. Like my mom always tells me, like, what else are you going to do? You got to do it.

Bill Gasiamis 39:22
I mean, that’s so true. There’s nothing else you can do, I did. But did you ever have this is not happening moment? What were the internal battles like? How did you comprehend what was happening to you? And then you know what you had to deal with, the sudden changes of all the things that you had to deal with.

Lorenzo Price 39:49
So, I don’t know if this is healthy or not, but I have just you. I almost immediately accepted it like it was, like I had this moment where this nurse woke me up from the coma in the hospital. Her name was Chloe. I went back and met her so and she woke me up in the hospital and told me that I had been in a coma and where I was, and I just had like, this immediate thought in my head and like, instead of, like, panic, or like, oh my god, like, what is like, what’s happening?

Lorenzo Price 40:32
I just had this moment of clarity, like, wow, I’ve wasted a lot of time in my life being upset, you know, being mad. I just like I and ever since I that moment, ever since I came home, I’ve just maintained this, like it’s all good. I accept this and I can, I can do this. And I think that a lot of people don’t have that kind of mindset.

Bill Gasiamis 41:02
Extreme acceptance.

Lorenzo Price 41:04
Yeah, I guess it’s extreme, but it’s, I just also know that it could crush me if I let it. And it seems there’s really only two options, I either let this thing like crush me, or I do the best I can, to be as good as I can with my life the way it is now.

Bill Gasiamis 41:25
I love that man, extreme acceptance is probably my word. I don’t know if it’s totally your word and 100% appropriate, but you said you’re not sure if it’s healthy or not. I mean, it’s properly healthy to accept something and then move on with it and find solutions to problems, then focus on problems without looking for the solutions, you know.

Lorenzo Price 41:51
Yeah, and that’s, yeah, you’re absolutely right. I just don’t feel like there’s time to dwell on the things that can make me sad I can’t do anything about that, because I can do, I could do right now. I can reach out to you and ask you about your podcast. I can take an Uber to see a friend, you know, I can. I can hang out with my kids on Friday night and Saturday and like, and I just look forward to those things instead of pushing it all in which I think a lot of people are afraid that I’m doing, but I’m not like, I honestly don’t feel depressed or upset or anxious or sad.

Lorenzo Price 42:34
If I get in the mood where I do feel like, you know, this kind of sucks, I’ll sit down and I’ll write something like a journal entry with all on my phone or my iPad, or I’ll write some music and, just kind of channel it that way. But I don’t like, I don’t know. I just don’t want to. I got to be a really good example for my children.

Bill Gasiamis 42:59
I love that.

Lorenzo Price 43:00
I don’t want them to look at their dad and see, you know, this disabled guy who can’t do anything, who’s let this beat him. I want them to see me and have an example for themselves. So when they grow up, if something ever does happen to them or someone they love, like they know there’s like, they could do better, and I’m going to keep doing better because of it.

Bill Gasiamis 43:19
I love it. I love it, that’s meaning as well. Like I always thought about the kids, and how do I go about presenting the after a serious you know, medical issue occurs, how do you present that to them so that they can touch wood in their time when they come across some difficulties with health or whatever that they’ve got an example to model or to lean on or to use as one way to go about it, when they’ve if they saw the other version the one, they’re losing my shit, where I can’t cope with everything, and when I haven’t come to terms with what I’m dealing with, it’s like, you know, why?

Bill Gasiamis 44:10
Why show them that version of it? Not that I didn’t have bad days, tough times and intermittent issues. I did, I let them play out, and then I moved on from them, so they saw me cry, get frustrated, angry, mad, all of those things. But then they saw me bounce back, overcome, and then transform it into a podcast, into a book, into all those things. And it’s like, it’s amazing what you’ve done. Yeah, it’s very different than just sort of sitting back and letting it take over my entire life. It does live with me every day like it’s the gift that keeps on giving.

Bill Gasiamis 44:48
For sure, you know, numbness, wake up in the middle of the night, balance issues, checking, you know whether my foot’s on the ground, muscle tightness never. Feeling comfortable in my body, you know, on the left side and all that type of thing, needing constant massages, needing therapy and all sorts of things. But I kind of also did that well. This is what I’ve got to deal with. I’ve got to find a way to live with it, adjust, modify the way I go about life and and just sort of this is going to sound weird, like, appreciate the opportunity to view life from a completely different perspective and lens.

Lorenzo Price 45:36
Absolutely.

Bill Gasiamis 45:37
You know, I don’t know if that’s hard for people to hear. Some stroke survivors may not resonate with that, and I get it totally cool, but it’s like, I don’t know it’s offered. It’s more depth if I can’t give it a better word, a different, more amazing word, unless offered more depth in how I viewed life, or how I experience life, I don’t know if some people are not comfortable about it.

Lorenzo Price 46:09
I feel, yeah, I do like things taste better, things smell better. I’ve had this I talked to Doctor Michael David. He’s the guy who actually did my craniotomy and literally saved my life that day. But he and I talk a lot. I see him often, and I’ve got this thing that we talked about where, like, I have this get to attitude a lot, even when I know I gotta go and kill my legs in therapy, like I don’t have to do it, like I get to do it and like that.

Lorenzo Price 46:45
That kind of perspective helps me a lot, because I might have, like, for a whole day ahead of me, that’s just a nightmare. Like I get to do this instead of having to, and it makes it makes my outlook a little bit better. Get to just think of things that way, like I don’t have to do anything, like I get to do it all.

Bill Gasiamis 47:07
That’s pretty cool. How old are the kids now?

Lorenzo Price 47:11
They’re 5 and 8.

Bill Gasiamis 47:13
They’re very little.

Lorenzo Price 47:15
They’re very little, yeah, so when this happened, they were 2, almost 3 and 5.

Bill Gasiamis 47:24
Yeah, right. Well, that’s really cool that you can still have them in your life, and they can be part of your, you know, Fridays and Saturdays and whatever comes later, because that will evolve and emerge as well, and that might pick up and improve, and they’re kind of lucky to have you around, but also lucky to have this version of you, which is so curious about how to go about this new way of life, and you’re discovering things that you never knew before. You’ve let go of a lot of things, though.

Bill Gasiamis 48:01
So what is it like? How did you go about, kind of getting your head around, having to let go of tattooing and to let go of the other things that you were doing that were important and interesting?

Lorenzo Price 48:15
Those things took a little bit longer for sure. You know, I was in love with my job. I was, I loved what I did. So having to get used to not doing that again, it felt like I lost the whole part of my identity. Like, just like strips from me. I don’t know if that makes any sense, like, yeah, that was like me, like I was the tattoo artist, piercing musician. That was who, that’s who I was professionally, like, coming waking up from a coma, and, you know, my apartment’s gone, my job’s gone, and, like, just like, now I’m living at home again and all that’s behind me.

Lorenzo Price 49:00
It just was a struggle, that was a struggle for a while, to like, accept the fact, like, I’m not gonna be able to do this anymore, I can’t tattoo. I can’t see enough to tattoo. And it’s just like it killed me a little bit on the inside. It really did, because drawing is what I’ve always done since I’m a little little kid, and not being able to draw it just, it just took a huge part of me away. But I’ve channeled that into writing. You know, I always like to write, so now, since I can’t draw like I just, I try to write a lot.

Bill Gasiamis 49:42
And that’s been really helpful. What do you like to write about? At the moment.

Lorenzo Price 49:47
I’ve been writing all about my experiences. I’ve been posting them on my Facebook for like, the last like eight months or so. So they’re just, you know, just stories or or freestyle poetry. Just audio, just all about this whole thing, all about my stroke and strokes in general, and what it was like to be in a coma, you know, and types of questions people ask me. It’s all about that stuff.

Bill Gasiamis 50:13
Do you see this body of work getting compiled in some way, shape or form in the future, becoming a book.

Lorenzo Price 50:20
I think it could, I think maybe it could be one day. You’re not the first person to ask me. I think that, with some help organizing it, maybe it could be, yeah, I think the materials good. I think that it’s, I just try to, you know, I’m not good at, like, A A B B, rhyme, this or rhyme that.

Bill Gasiamis 50:52
Your bitter life never happened.

Lorenzo Price 50:55
Yes, like, I just kind of, like, write it like a letter.

Bill Gasiamis 50:58
Almost, I hear you, but not to anybody. Yeah, it could be a memoir to yourself. You know, the days that you wrote individual stories or feelings or expressions, that could be fine, too. There’s no such thing as the perfect format book, you know, like, I think it’s more interesting and more raw to have a blow by blow, day by day, kind of linear experience of what somebody who’s going through, what you’re going through, might have experienced.

Bill Gasiamis 51:32
You know, or had happened to them, and the thoughts and the things you overcome, and all that, Like it could work really well. Yeah, I was just curious about that.

Lorenzo Price 51:45
I’ve definitely been considering it, because I’ve been asked multiple times. I just got to organize it all, I guess, and get to get to an editor, I don’t know, like I can write, and I have my friends like “Hey, check this out. Will you help me edit it?” I’ll have them help me that way. But yeah, like, I think getting it into a book format could be really, hopefully, maybe inspiring for people. It would be, at least for my kids one day.

Bill Gasiamis 52:14
Absolutely, man, yeah, I would love that. I would love to see that that happened or that it didn’t happen. It doesn’t matter, but it’s a great idea to sort of contemplate and think about, because if you’re writing and you’re putting it somewhere like online, there’s no reason why you can’t transfer that onto paper and just bind it and turn it into something with a little bit of support help, a little bit of tweaking, you know, a little bit of refining whatever it is. There’ll be plenty of people that might be able to advise you on that and support you with that, just when the time comes.

Lorenzo Price 52:45
Yeah, I’m sure, yeah. I’m really fortunate with like, the support that I have, like the people that are around me are all my mom, my brother, my sister, my dad, everybody, even my neurosurgeon, yeah, formed a really great relationship with him. He, you know, like you spoke earlier, I believe about your sort of comparing, an atheist, yeah, before the stroke happened, I was the total atheist. I was like I didn’t believe in God. I didn’t see any room for it at all. And then this brilliant Catholic Surgeon named Dr. David McCaleb, like, saved my life.

Lorenzo Price 53:40
Like, and then offered me some room in his, like, get to know him, and a way to play some music, because he plays music. So, like, now I can go to his house and he’ll hop on the piano, and I can play some music with him, and he was really, really helped me. And after getting to know him and I made a decision one day, I went to his office, and I’ve just went there to thank him. I asked my mom to drive me up there, like, can we? I want to thank Doctor Michael? And I said, Doctor McCaleb, thank you.

Lorenzo Price 54:16
Like you saved my life. I feel like the luckiest man on the face of the earth, like there couldn’t possibly be anybody luckier than me. And he said to me, he said, Lorenzo, he said you weren’t just lucky that you’re that this worked out. He said you were lucky to have me as your surgeon, he said, because most other surgeons would have let you go, because I had to fight for you, with you. I guess the higher ups you keep me on. I guess the medication is very expensive. I guess it’s expensive to keep somebody in like Him.

Lorenzo Price 54:59
So, and he told me, and he said, by the way, he said “There’s no such thing as luck.” I said “What do you mean?” He said, well, he said, when he was younger, as a surgeon, that a nurse told him that there was no such thing as luck, that there was only God’s grace and God’s mercy. And that just resonated with me so heavy. And like, I went from like this non-believing atheist to Doctor McCaleb. Would you confirm me?

Lorenzo Price 55:25
So like this man saved my life twice. He took me to the Catholic Church, and I went to the RCIA, basically, like an adult catholicisms, and he’s my sponsor for it. And it was, it’s just cool. It’s really cool. He’s been an amazing person to have gained in my life. So I might have lost some people, like I’ve gained some really great people.

Bill Gasiamis 56:09
Now you definitely have. And when people go through an existential crisis, often times they go one way or another. They find God, religion, whatever, or they move away from it. And it doesn’t really matter which way you go or why you go that way. What I love is that what you found is some what’s the words, something positive out of it, some strength, you know, some deeper meaning. And that’s what’s really good about it. That’s, you know that’s useful and helpful in recovery and helping somebody get through.

Bill Gasiamis 56:44
You know, the idea of faith, wherever that comes from, is like a faith in a surgeon who’s going to open up your head, faith in a hospital system, faith that everything will be okay, faith, even if you don’t associate it and attach it back to God. Faith in God, it’s a really powerful thing to experience, to be able to fully have faith in something working out, even if you can’t see the way forward, even if you can’t understand how it’s going to be okay, you have to start with faith.

Bill Gasiamis 57:19
If you don’t have faith in something well, then the path forward is going to be a lot harder to unfold and see and develop and walk and walk, you know.

Lorenzo Price 57:31
Absolutely it’s honestly coming into the church, bringing this into my life, has been a wonderful experience too. Like I never thought that I could embrace it the way I had, like, it’s been great for me. And there’s a stroke support group at the church too that I attend.

Bill Gasiamis 57:54
Bonus.

Lorenzo Price 57:56
And, you know, they’re all very nice people, you know, varying ages, found my age all the way up till, it’s my grandparent’s ages, all different stories. And it’s been really nice for me. It’s been making me feel better, like I said, I don’t. I’ve been letting this thing beat me up. Not gonna let it beat me. And I haven’t been letting it.

Bill Gasiamis 58:20
Yeah, what was the hardest? Was it physically, emotionally? Was it mental? What was the hardest part for you do you feel?

Lorenzo Price 58:30
The vision is still and what was the hardest part, especially in the beginning, for like, the first year in this right eye over here, there was a big black spot in it from the retina hemorrhage that happened, and noticing it was way worse than it is now, like, now, I can’t tell you where I’m missing, the spot I know just from knowing, but like it feels normal for me, but where, when I first came home from the hospital.

Lorenzo Price 59:11
And for like, that first year, probably like it was just black on this side, just a big black, like a broken Television. And having to adjust my vision, and getting used to not being able to see, like, that’s still the worst part, but it’s, you know, it could be 10 times worse than it is. So, like, it’s not that bad.

Bill Gasiamis 59:37
I love that you’re such a positive guy. Like, everything is half glass full, but there would have been dark moments, a couple of dark moments. One, maybe, was there any dark moments, and how did you get through them?

Lorenzo Price 59:50
I think that this is why I say I’m not sure if it’s healthy or not, because I just haven’t had that moment for, it’s good. I haven’t had that moment where I broke down, like, and I don’t know if I’m going to, I don’t like, I know that like people around me, like my dad or like my friends. Like “Are you okay?” Yeah, totally fine, you know. And like, I honestly feel like that’s the truth. Like, I don’t know, I don’t think I’m gonna break down and I haven’t.

Bill Gasiamis 1:00:25
And beautiful man, I love that. It’s the true answer as well. You know, you come across people “How you doing?” and they always say “I’m good, I’m fine.” And they’re not really. That’s just their default response, if you’re truly good and fine, and that’s the answer, that’s brilliant. I love that. That is, why not? I mean, it’s a skill to teach people and to master. And if I could model that version of a stroke survivors mindset, like bottle that and then just hand it out in droves, and people just took that and then that’s what they had. I mean, wow, you’ve been through so much, and it’s still like that.

Bill Gasiamis 1:01:06
It is the ultimate stoic philosophy in practice. I’m not sure if you know much about the Stoics, but it’s like, what’s good about this? Or what can I learn from this? Or how can I evolve from this? It’s always your questions always seem to be about how to transform whatever it is that you’ve experienced into something more meaningful. Something just popped into my head. Tell me what you think about this idea.

Bill Gasiamis 1:01:33
You know how tattoos are a trend, and all these kind of different styles and all these things are a trend, and you see them happen. What if you become the first visually impaired tattoo artist, and you get some brave souls to allow you to tattoo them visually impaired?

Lorenzo Price 1:01:49
It might not be a bad idea. There might be a market out there for that.

Bill Gasiamis 1:01:55
I reckon there is. I’ve often come across artists, people who draw, etc, and one of the things that kind of, you know breaks my heart a little bit is when they say I can’t paint draw anymore because of my vision or my hand. And I’m like, dude, like you should be painting and drawing with the skills that you have, the way that your brain artistically works, which is the the that doesn’t go away in this new version of yourself, with this new way that you see the world and express the world.

Bill Gasiamis 1:02:37
I figured that what that would do is kind of give a deeper insight and create a unique perspective into things that visually, quote, unquote, normal people can’t see or comprehend. Do you know what I mean? And it doesn’t matter what you that it doesn’t look traditional or whatever. It just matters that what you’re doing is still applying your technical knowledge in this new visual way because of the way that you’ve been impacted.

Bill Gasiamis 1:03:14
And I often reflect back on one of the most famous female artists, Frida Kahlo from Mexico, who started painting when she became injured and expressed her challenges and all that kind of stuff in the most unique way. And as a result of that, her work has become renowned across the world for 100 years. I don’t know. I just feel like that’s something that people should explore, people who have previously been, quote, unquote, normal and now visually impaired or physically impaired. I think that should be something that people explore. What do you reckon of that idea?

Lorenzo Price 1:04:00
You know what if I can get some people who want me to do it, I’ll do it. I’ll give it a shot, you know, like, why not?

Bill Gasiamis 1:04:09
Yeah, even if it’s not tattooing. But I think that would be a cool story to share that first, you know, visually impaired tattoo artist has their first client or victim, or whatever you want to call them. And then if you did art. I mean, you can imagine how simple it would be to transfer that onto a canvas, for example, and have that as part of the entire journey you know, your life, where you came from, where you ended up, and how you transformed that from being a disability to an ability and one of the most.

Bill Gasiamis 1:04:59
Best examples for that is a young girl who I interviewed on the podcast who had a stroke when she was a very little child, and her parents have supported her to find a way to raise some money. And her name is Clara. Clara Woods. I interviewed her mum and her stepdad and the entire family, they’re crazy. She had a perinatal stroke, and that was episode 265, and let me tell you, she has like 200,000 subscribers or followers on Instagram or socials or whatever. And she’s a teenager now. She’s probably just turned 18, something like that.

Bill Gasiamis 1:05:59
And she paints man. She paints the most unbelievable. I would call it abstract work. And she sells canvases because she has become known as the young stroke survivor who has developed she’s non verbal, and she has some, I think, physical deficits as well, the way her muscles work, etc, make it a little bit difficult for her to get around. She’s had a lot of therapy and stuff, but she expresses herself in really vibrant colors. There’s a lot of hearts in her art. She does little canvases.

Bill Gasiamis 1:06:40
She does massive ones, and it’s just been a real joy to follow this story about how they’re, they have the whole family has the same attitude as you, and they’ve just come together, and they’re just running with everything that they possibly can to not miss out, to not miss out on anything, and not to kind of step back and be kind of one of the many people who are not seen after they have such a thing happen to them.

Bill Gasiamis 1:07:07
I know I just get really passionate about hearing people saying, I can’t paint anymore. I can’t express myself anymore because this thing happened to me. I don’t know if that’s real. I don’t know if it’s true.

Lorenzo Price 1:07:20
You know that’s I like, I like that. Maybe it’s not true.

Bill Gasiamis 1:07:25
Yeah, I think I might send you that link, just so you can have a bit of a look at it. It’s just, it’s heartwarming, and it’s great to see this person express themselves, and it’s great to see that they’re turning it into a career, or making a few bucks out of it and helping cover the costs, because the costs are pretty huge, you know, as you know, and it’s something different. I’d like to throw that out there and just challenge people to think about.

Lorenzo Price 1:07:59
Yeah, please send me the link.

Bill Gasiamis 1:08:01
Yeah, I will. I’ll send it to you. I’ll also put it on the show notes. So anyone who’s interested in having a look at Clara’s story, they can have a they can have a bit of a look and get inspired by her and her family. They’re just the most amazing. Never Say Die, never quit, kind of people, and we need more examples of that.

Lorenzo Price 1:08:22
People gotta have that attitude. Like, I think that a majority of my whole recovery has been like, just having positivity and like being positive about it.

Bill Gasiamis 1:08:34
I reckon if I was near you and I wasn’t in Australia, like 12,000 miles away or something like that, I don’t know how far away we are, I reckon I might be. Might have been your first tattoo client after stroke, because I’ve never had a tattoo before, and what a perfect way that would have been to.

Lorenzo Price 1:08:55
Well, then I guess I’m going to have to come while we out there, and we’ll test it out on you.

Bill Gasiamis 1:08:59
Absolutely, man, come and do it. What we’ll do is to make it safe so you don’t cover my entire arm. What we do is, like, would create, like, a perimeter out of, like, some kind of a thing, right, where you could just start drawing and whatever comes out of it, comes out of it. I think it’d be the best way to do it. I’m totally into it. And then you can feel your way around that perimeter. You know where the edges are. So you could, you could maybe create in your mind and in your eyes, you know, some kind of thing that starts with the perimeter. You start on the outside and you work your way in.

Bill Gasiamis 1:09:34
I don’t know what like I’m just running with it. I don’t even know if it’s appropriate, but.

Lorenzo Price 1:09:39
These are already good ideas.

Bill Gasiamis 1:09:40
Good, good. Well, I hope so, man, I just, I don’t know. I get passionate about it, you could tell, and I could over-talk about it, so I’ll just move on now.

Lorenzo Price 1:09:51
I think it’s great. I don’t have any issue hearing about it.

Bill Gasiamis 1:09:54
Yeah, good. I’m glad. I just wanted to ask you, so there’s a lot of people listening now, who are being in your situation, my situation, our situation, they might be early on in the process. They’re looking for a little bit of wisdom. They’ve definitely picked up on heaps of it through the podcast. But is this something that you specifically would like to share with the people watching and listening?

Lorenzo Price 1:10:19
Yeah, no matter what, no matter what is, you’ve survived this thing, like this, like, life is so good post stroke. You might, might have had a miserable experience prior to stroke, and think that things are going to be worse after but like, you’ve survived it and you’ve lived it, and you should focus on that, because that’s what I did, like, the gratuity of just being alive and keeping that attitude, no matter what’s come my way, no matter what I’ve had a bad seizure and ended up in hospital again.

Lorenzo Price 1:10:56
No matter if I’ve fallen or whatever’s happened to me, I just keep up no matter what. I think everybody who goes through things like this needs to keep that attitude, even if it’s hard, like, I know it’s difficult, it’s been not like, it’s just been easy for me to do. It’s been a challenge. But I’ve made sure that I’ve maintained that no matter what, like, I can do this, and so can they.

Bill Gasiamis 1:11:22
Yeah, that’s great advice, man. I really appreciate you reaching out to be on the podcast. It is fantastic meeting you and getting to hear your story and to learn from you. I really appreciate the you’re telling me what I needed to hear about the way that we should approach recovery, or that’s beneficial to approach recovery. It’s just been an absolute pleasure, man. Thank you so much.

Lorenzo Price 1:11:53
Thank you so much. It’s been a pleasure for me as well. I really appreciate it.

Bill Gasiamis 1:11:57
And that wraps up today’s episode with Lorenzo Price from surviving an AVM rupture to coping with vision loss, delayed diagnosis and redefining his path forward. Lorenzo story is a powerful reminder that healing is possible and that creativity, faith and community can be anchors during recovery. If this episode resonated with you, I’d love to hear your thoughts. Leave a comment, like and subscribe on YouTube, and if you’re listening on Spotify or Apple podcasts.

Bill Gasiamis 1:12:28
A five star rating or review really helps more stroke survivors find the show. Remember my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is now available. Just search my name on Amazon or head to recoveryafterstroke.com/book. Thanks again for being here. I’ll catch you in the next episode.

Intro 1:12:50
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 1:13:20
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Intro 1:13:45
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The post A Tattoo Artist’s Life Turned Upside Down by AVM – Lorenzo’s Stroke Survival Story appeared first on Recovery After Stroke.

When we think about stroke, many of us imagine the classic signs — facial droop, arm weakness, slurred speech. But what happens when a stroke strikes deep in the brain, with no clear warning signs? And what if the cause isn’t in the brain at all, but in the heart?

In this post, we’ll explore the connection between thalamic ischemic stroke and PFO (Patent Foramen Ovale), a heart condition that can quietly go undetected until something major, like a stroke, occurs. If you’re a stroke survivor seeking clarity or a caregiver trying to understand the medical puzzle, this guide is for you.

A thalamic ischemic stroke happens when blood flow to the thalamus, a small but critical structure in the center of the brain, is blocked by a clot.

The thalamus acts like a relay station, processing and transmitting information between different areas of the brain and body. It plays a vital role in:

• Consciousness
  
• Sensory perception
  
• Sleep regulation
  
• Motor control
  
• Emotional processing
  

Damage to the thalamus can affect everything from sensation and balance to memory, alertness, and even emotional stability. Symptoms vary depending on the affected region, but may include:

• Confusion or sudden unconsciousness
  
• Numbness or tingling
  
• Fatigue
  
• Difficulty with coordination
  
• Changes in speech or language
  
• Visual disturbances
  

Because it doesn’t always show up with the classic FAST signs, a thalamic stroke is more prone to misdiagnosis or delayed detection, especially in younger individuals.

A Patent Foramen Ovale (PFO) is a small flap-like hole between the left and right upper chambers of the heart. It’s part of fetal circulation and is supposed to close after birth. However, in about 25% of adults, it remains open, usually without causing any symptoms.

So why does it matter?

In rare cases, a PFO allows a blood clot to bypass the lungs (where it would normally be filtered out) and travel directly to the brain. This can result in a cryptogenic stroke, a stroke with no obvious cause.

When a stroke occurs deep in the brain and the usual risk factors (like high blood pressure or atherosclerosis) don’t apply, especially in younger stroke survivors, doctors may start investigating heart-related causes. A PFO is one such possibility.

Here’s how it might connect:

• A small clot forms in the body, often in the veins.
  
• Instead of being filtered out by the lungs, it passes through the PFO into the arterial system.
  
• The clot travels to the brain and blocks blood flow, possibly to the thalamus, causing an ischemic stroke.
  

This pathway is called a paradoxical embolism, and it’s increasingly recognized as a contributor to stroke in people under 55, particularly those without traditional risk factors.

If you’ve experienced an ischemic stroke, especially at a young age and without clear risk factors, your medical team may recommend a test like a bubble echocardiogram to check for a PFO.

If a PFO is found, treatment options include:

• Antiplatelet or anticoagulant medication (like aspirin or blood thinners)
  
• PFO closure, a minimally invasive heart procedure that uses a catheter to implant a small device that seals the hole
  

While not all PFOs require closure, in cases where it’s likely the cause of stroke, closing the PFO can significantly reduce the risk of recurrence.

Whether your stroke was linked to a PFO or not, the emotional journey after a stroke is just as significant as the physical recovery. Many survivors of thalamic ischemic stroke — even those with no visible impairments — report:

• Fatigue
  
• Cognitive fog
  
• Emotional overwhelm
  
• Survivor’s guilt
  

These are real and valid experiences. Healing from stroke isn’t linear — it’s a process that involves community, compassion, and ongoing learning.

If you’re navigating life after stroke, know this: your story matters, and your recovery is worth fighting for — no matter how “invisible” your symptoms may feel. Many survivors live with unseen challenges that are just as impactful as physical deficits.

Explore more stories of stroke recovery on the Recovery After Stroke podcast, or grab my book The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book for tools, hope, and community support.

And if you suspect your stroke may have been caused by a PFO or are still searching for answers, speak to your doctor and ask about further testing. The more we understand the root causes, the better we can recover and prevent another.

Her stroke was missed for 12 days. Fatty, guilt, advocacy, and a powerful return to purpose followed. A must-hear for stroke survivors.

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Highlights:

00:00 Introduction and Acknowledgements
03:07 Lisa’s Stroke Experience
05:43 Diagnosis and Initial Reactions
21:33 Discovering the PFO
29:14 Joining the Stroke Foundation Board
35:19 Survivor’s Guilt and Stroke Recovery: Lisa’s Honest Reflection
43:25 Accepting the New Normal
54:51 The Hardest Thing About The Stroke
55:47 The Lessons From The Stroke
1:04:00 Advice to Other Stroke Survivors

Transcript:

Bill Gasiamis 0:00
Welcome everyone before we dive into today’s powerful conversation, I just wanted to thank you for being a part of this incredible community. Your support, whether it’s sharing the podcast, leaving a review or simply tuning in each week, makes a massive difference.

Bill Gasiamis 0:15
Together, we’re creating a space where stroke survivors, caregivers and allies can feel seen, heard and supported, as you may have heard in recent episodes, since 2015 I’ve been personally covering all the costs of producing the recovery aftershock podcast to make sure these conversations remain free for those who need them, late last year, I opened up the opportunity for those who found value in the podcast to support it on Patreon.

Bill Gasiamis 0:43
You can learn more by going to patreon.com/recoveryafterstroke, a heartfelt thank you to everyone who’s already supported the podcast, and a special shout out to my most recent supporters, David and Luke, your generosity helps make this work possible, and if supporting financially isn’t something you can do right now, just listening to the podcast and not skipping the ads goes a long way.

Bill Gasiamis 1:11
Every little bit of engagement helps keep this going, and I’m incredibly grateful. Before we begin, a quick reminder about my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It has helped hundreds of survivors and their families around the world find meaning and hope after stroke, you can grab your copy at recoveryafterstroke.com/book, or on Amazon by searching my name Bill Gasiamis.

Bill Gasiamis 1:37
Now I’m really excited to introduce today’s guest, Lisa cook. Lisa experienced a thalamic ischemic stroke at just 30 while attending a work conference interstate. Despite collapsing and losing consciousness, her stroke went undiagnosed for 12 days, initially mistaken for a seizure. It wasn’t until a follow up MRI back home in Adelaide that the truth came to light. In this episode, Lisa shares what it was like to have a stroke with no classic symptoms, how it led to the discovery of a hole in her heart and the emotional impact of surviving when others don’t.

Bill Gasiamis 2:16
Including survivor’s guilt, extreme fatigue and the invisible symptoms that still linger. She also talks about how this experience eventually led her to the board of the Stroke Foundation, bringing her governance expertise and lived experience to improve stroke advocacy and support. Lisa’s story is a profound example of post stroke purpose and resilience. Let’s jump in. Lisa Cook, welcome to the podcast.

Lisa Cook 2:44
Thank you so much, Phil. I’m really excited to be here.

Bill Gasiamis 2:48
Same here I was. It was really lovely to meet you at the Stroke Foundation event that we were both at a few weeks ago. One of the things that I have done recently is re engage with the Australian Stroke Foundation, with the Australian stroke survivors.

Lisa’s Thalamic Ischemic Stroke Experience

Bill Gasiamis 3:07
It’s not that I was disengaged, but it’s that with the podcast, things have taken off, and my biggest audience is in the United States, which is nothing I expected. So it’s really good to meet people locally, and when, when I met you, I thought, well, this is a story I need to learn about. So can you start by telling us a little bit about what happened to you?

Lisa Cook 3:35
So we’ll go back to 2015 so it’s coming up to a 10-year anniversary having my stroke, and it was really a day like mainly any other day. But that night I was I was actually in Sydney, so I live in Adelaide, but was up in Sydney attending a conference and attending a big, sort of gala dinner that was on for that conference that night. It was fine, things normal, you know, didn’t drink much, didn’t do anything out of the ordinary.

Lisa Cook 4:15
By the time we got back to the hotel room, I started to feel really dizzy, which for me, is actually not that out of the ordinary to have that happen. So normally I just lay down, and it kind of passes, and everything’s fine, but this time when I laid down, I proceeded to fall unconscious, and was then unconscious probably for about an hour or so so, passed out in the hotel room, woke up in St Vincent’s Hospital in Sydney, not knowing, obviously, what had happened.

Bill Gasiamis 4:56
How were you found?

Lisa Cook 4:58
Well, my husband was with me. Me. So he was the one that had to experience all of that really, you know, fear for the worst. He was trying to get me to wake up, and I wasn’t. So that’s never a good feeling. And he was the one who called triple zero for the ambulance to come, but couldn’t quite work it out, so ended up getting the hotel security and a whole bunch of people in the room, apparently, trying to help out and and sort of fix me up, get me well, or get me somewhere where I could get better.

Bill Gasiamis 5:38
What type of stroke did you have? And do they know what the underlying cause was?

Lisa Cook 5:43
Yeah. So I had a clot in my Thalamus, so I believe is that an ischemic stroke, yeah, in my Thalamus, which is a part that’s right in the middle of your brain. And unsurprisingly, because of the symptoms I had, it’s the part that controls consciousness and things like that. So that was the part of the brain where it happened, the underlying cause. So as many of your listeners might be aware, if they themselves are young and have had a stroke, which is crazy in itself, because I always thought of strokes as like an old person thing, right?

Lisa Cook 6:32
Like a lot of us probably did, and then we get thrust into this world where it’s like no actually, anyone at any age can have a stroke, and a lot of people that I talked to had the same underlying issue as I did, and that was a PFO so patent foramen ovale, which is a hole in your heart that serves a really great purpose when you’re in utero.

Lisa Cook 6:59
But once you’re born, should really close over and not cause any issues. But mine had not. Many others I’ve spoken to have had the same scenario where really the first sign that you get that you have this heart problem, a congenital heart defect, is that you have something major, like a stroke.

Bill Gasiamis 7:20
Yeah. So then you’re in hospital, you discover that you had a stroke. Somehow, they worked it out, I imagine, relatively quickly.

Lisa Cook 7:32
No.

Bill Gasiamis 7:33
Oh, no. What happened?

Lisa Cook 7:34
They didn’t. Because my symptoms, what I presented with, were not our classic fast signs or FAS signs. They sort of, I guess, take the sort of, what is the most obvious answer that could be happening here? And of course, they do a CT scan to check if there’s anything major going on in your brain that early after having a stroke, doesn’t actually show up on a CT scan. So that was next to useless, really.

Lisa Cook 8:10
And it could be because it was the middle of the night. It’s kind of around 1130 12 at night. There probably wasn’t an MRI technician available, so they didn’t opt to do an MRI, and they’re a little bit more expensive than your CT scan. So there could be a bunch of trade offs that are happening there that you know could have really expedited the diagnosis here. But they also, when I was in the hospital, undertook some epilepsy tests.

Lisa Cook 8:39
So I was actually those epilepsy tests, you know, didn’t cause me to have an epileptic fit, because that wasn’t the problem, but they did discharge me with a potential first seizure as being the most likely reason why I passed out and was unconscious for an hour. It wasn’t until 12 days later, when I was back in Adelaide and had an MRI because my discharge was under the proviso that I go back home and I go and see my GP and I get an MRI. So I had the MRI, and it was that MRI that showed up that I had had a stroke.

Bill Gasiamis 9:19
Wow. How old were you?

Lisa Cook 9:22
I was 30 at the time.

Bill Gasiamis 9:27
And in the 12 days after you were discharged, did you have any other moments, any other scares, anything else that happened to you that made you feel like something’s still not right. How did it go?

Lisa Cook 9:45
The fatigue, the tiredness, was just off the charts.

Bill Gasiamis 9:51
Lisa’s story is such a striking reminder that stroke doesn’t always look like we expect, and that healing takes time, patience and. Often reinvention. Let’s pause for a moment, and if you’re finding value in stories like this, here’s how you can help keep them going. Stories like leases are exactly why I created the podcast to shed light on real experiences and help stroke survivors feel less alone on the road to recovery.

Bill Gasiamis 10:18
If this conversation resonates with you, please consider supporting the podcast through Patreon, at patreon.com/recoveryafterstroke, Your support helps me continue bring lived experience to light and make a big difference. Now let’s get back to Lisa as she shares more about overcoming survivors guilt, navigating life after misdiagnosis and finding purpose through service. On the Stroke Foundation Board.

Lisa Cook 10:45
I would sleep really long nights, like 9,10, plus hour sleeps, then get up the next day and kind of only really be able to last until lunchtime, and then I kind of fell off a cliff. And the weird thing was, like, the fatigue is one thing. The other thing that was really out of character for me is that I just didn’t care.

Lisa Cook 11:14
I didn’t care that I was that tired, that unmotivated, that literally, all I wanted to do was stare at a wall. And that was just, that’s just not my character. I mean, Bill, you’ve kind of seen me in person. I’m a little bit more energized now. It’s been 10 years, but I still, I still get to that lunch time period each day, and after lunch really have this dip down. It’s, it’s sort of like my capacity for mental work really is only kind of half there. It feels.

Bill Gasiamis 11:56
So they’ve discovered that you’ve had a stroke, how does that news go down? That would have been an interesting thing to deliver to you and your husband after 12 days?

Lisa Cook 12:12
Yeah, I’ll tell you how it all unraveled, because it was, it’s a weird story, and it’s always funny in hindsight, right? I’m glad that we’re here, that we can look back and laugh on some of these things. So I by this stage, when I had gotten to the point where I was having the MRI on the day my husband had gone back to Sydney for work, so I was staying with a friend, because my darling friend did not want me to be alone, given what had happened, and given that we were still so uncertain of of what’s going on here.

Lisa Cook 12:47
And so she was out and about doing something I had Ubered or caught a taxi to the radiology place, had my scan. No big deal. Got back to my friend’s house as I was walking in the door, I get a phone call from the radiology clinic, and they said, We need you to come back. We forgot to scan some parts. And I was like, this is not just a place that like opened up yesterday.

Lisa Cook 13:20
You know, this is a reputable brand. I was like, That’s so weird. What a pain in the butt. Okay, fine. I’m coming back because we need answers. So I went back in the MRI again. Anyone who’s had an MRI, you know, they’re just not, you know, those headphones they give you, where they play you whatever radio station you want, then you can’t hear it anyway.

Bill Gasiamis 13:43
What’s the point of that one MRI is too many, let me tell you.

Lisa Cook 13:48
So as I’m getting out of that second MRI like, getting off the bed, stepping off the bed, holding my gown to, you know, save your dignity as much as you can. The the the person who like shuttles you between the waiting room and the change room and the machine, and then they take you back to the change room and stuff. She came up to me and said, We’ve booked you in to see your doctor at five o’clock this afternoon. They were the exact words out of her mouth. And what do you think I thought when she said that I’m dying.

Bill Gasiamis 14:26
I thought I would have thought the world’s coming to an end.

Lisa Cook 14:29
Yeah, I’m dying. I have a brain tumor. I’ve got three months to live. I’m dying. I’m dead, yeah. And so I said, Why? Why have you booked this appointment? We can’t tell you, and yes, they’re very reticent, but I think she would have acknowledged the fact that she just dropped that on me without any real kind of closing that loop, and rather than let someone live in agony for half a day, she was like, Well, I. The radiologist thinks that they found evidence that you had a stroke.

Lisa Cook 15:06
And I tell you what, I was not expecting that I was not expecting that at all, because to look at me, you can’t tell that something has happened like that. I’m one of the very lucky ones who managed to, somehow, by some sort of grace of some sort of higher power, whatever it was to, to not have any outward signs that I’ve had, you know, brain damage. So I was like, in my head, going through all these things. I’m not old. I’m not disabled. What does this all mean?

Lisa Cook 15:42
I what I do know of things like this is that once the damage is done, the damage is done, it’s not like, it’s going to get worse and because it’s been 12 days, but really let it go, kind of thing. And I was just like, really? And she just said, Do you want to go talk to the radiologist? And I was like, Yeah, so the radiologist, he’s showing me the images of my brain on the screen, on a computer screen, and he’s and he’s Man, these bedside manners of these people sometimes really does make me just get big question marks.

Lisa Cook 16:19
He goes, Yeah, I found this. What you can see this bright white spot on your brain. Some people would think that’s a tumor, but I’m pretty sure that what you’ve had is a stroke, and you probably had it about 12 to 14 days ago. And I’m like, Really, my choice is between a stroke or a tumor, like, what? What is it? Tell me for sure, so I know what’s going on anyway. And I when he said the 12 to 14 days, I was like, Well, today is like 12 days.

Lisa Cook 16:48
How do you know what sort of time period? And he explained that the brightness of the the sort of white patch that you see where there’s been that brain damage is quite bright, the sort of fresher that it is. So he said, so this and this and this, pointed it out. I was like, Okay, this is a lot. And then he goes, by the way, I found something on your cerebellum. I think you’ve had an earlier stroke, but it would have been so small that you probably didn’t even realize it happened.

Lisa Cook 17:27
So I’ve just found out I’ve had two strokes. I just lose my marbles, right? Just bawling my eyes out because I’m just so confused. I’m like this. What does this mean? This doesn’t make sense. I’m I look fine. Yes, I’m really tired, but, but what does this all mean? Like, it was just so overwhelming to get that news, I think, in that fashion and sort of all at once.

Bill Gasiamis 18:00
And did you connect the dots when you said to me that dizziness or not feeling right in your head was common for you, you go, you lie down, and it gets better. Did you connect the cerebellum one with the dizziness later?

Lisa Cook 18:16
No, I, I honestly cannot think of when that might have happened. He, he the radiologist said you might have, like, accidentally bumped into a wall, or, like, dropped something you were holding and, you know, we do that kind of stuff all the time, and just go, what is going on with me?

Lisa Cook 18:37
And, yeah, after you’ve had a stroke, you kind of start to get paranoid with all those little things, but no, I also used to get migraines, and I’ve heard that migraines are associated with PFOs, and if you have your PFO closed, that for some people, it helps alleviate their migraines. There really is nothing that I can connect it with my my dizziness is more associated with my low blood pressure than anything else.

Bill Gasiamis 19:06
Okay, or it could be both. Wow. Anyhow, so you know that the way that they dropped the news to you when I went in to hospital for the first bleed that I had in my head, I was there again at around about 11:30 pm before somebody come to see me and say, we found a shadow on your brain. Oh, my God. And I was like, Okay, wow. What? What does that mean? And then this, I kid you not, these are the words, it could be a tumor. It might be malignant or it might be benign.

Lisa Cook 19:44
Great.

Bill Gasiamis 19:47
The next question was, Do you have any questions?

Speaker 1 19:53
No, that was a very informative description of what’s going on here.

Bill Gasiamis 19:58
I’m like, I. Okay? And he said, but you’ll see somebody tomorrow about it. I’ll take you through and they’ll explain the details. So with that news, I had to update my wife. She was at home with the kids back then, Feb 2012 that was and then I had to ring her, and I’m like, so what do I tell her now and then? What I thought was okay, I’m gonna play the incompetence card. I’m here. They’ve done nothing. They’re taking the time. They can’t get a doctor. There’s no news.

Bill Gasiamis 20:29
Go to sleep, put the kids to sleep, and come and see me in the morning. That’s how I wow, tried to get through the night.And I was like, I can know what was really weird for privacy. He pulled the curtains. Next behind the millimeter-thick curtain is another patient over there. There’s another patient over there, and it’s like, Why do you even bother pulling the curtains? I don’t understand. They’re not going to stop anybody from hearing what’s going on.

Bill Gasiamis 21:01
And I just found that whole experience real bizarre. Anyhow, the next day, I broke it to my wife, and I was 37 so we’re in the same situation as you was like, What is going on? How do we deal with this? How do we move forward now? Okay, so now you know, and then you go for a drive. I imagine you somehow get to your GP, yes, you have a further conversation with him about or her what the situation is, what’s going on.

Lisa Cook 21:33
Yeah. And my I have a really interesting, like, medical past, and weird stuff always happens to me, so my doctors kind of, I think she’s used to me by now, or wasn’t the time, and she was like, Ah, so that’s interesting again. I think I cried to have done a lot of crying. I cried to her. I’m like, I don’t know what this means. It’s just, like, just really full on.

Lisa Cook 22:01
And she explained, well, because you’re young, you’re a young person who’s had a stroke, we need to explore the two lines of possibilities. Well, the most obvious possibilities of why you’ve had this stroke. So the first one is the PFO, the heart thing. So you do that, you go down the cardiologist route with that one, and the other one is an autoimmune thing. So having a stroke is a sign of lupus, or one of the symptoms of lupus.

Lisa Cook 22:33
And so you go for a bunch of, like, 1000s of blood tests around your autoimmune stuff. And yeah, you just, you end up seeing neurologists, cardiologists, rheumatoid what are they called? Rheumatologists, all the ologists end up like talking to you and poking you and prodding you and trying to figure things out.

Lisa Cook 23:00
And yeah, so it turned out that I had the PFO the autoimmune stuff was kind of borderline, but there was nothing that was really definitively calling lupus or anything. So we kind of just closed that avenue of of exploration down. And yeah, went down the heart route. And it was quite, quite my cardiologist described the PFO as quite flappy. I love it. Yes, whatever that means.

Bill Gasiamis 23:33
That’s cool. So not only are you diagnosed with having had potentially two strokes, yeah, a little while later, you’re told that you have a hole in your heart, yeah. And then that most likely was what the cause of the blood clot was that traveled up into your brain, yeah? And now are they talking about closing the hole and having heart surgery? Yeah?

Lisa Cook 23:59
So that sounds more dramatic than what it turns out to be in reality, because, surprise, surprise, a lot of people have a PFO, and they’ve developed a technique and a do you call it a device, that they put in hearts for this reason. So they go in through your femoral artery and they feed up this little device that they then implant into the heart over that spot that should be shut, but there’s a flapping spot they shut the flap down.

Lisa Cook 24:43
So yeah, if they’re going in to give you heart surgery anyway, like crack open your chest kind of thing, they’ll go and fix it at the same time. But if there’s really no reason to open you up so dramatically, they’ll do it through that artery. Okay, and so that was, I said, I have weird medical stuff.

Lisa Cook 25:04
I ended up having an allergic reaction to the antibiotic they put me on before surgery, and that just then they gave me for nurgan to counteract the allergic reaction, which made me feel like I was having a stroke again, because I couldn’t talk when they gave it to me. I just couldn’t find words, and it just was such a weird experience. And, yeah, that was just weird. The whole thing was weird. Wow.

Bill Gasiamis 25:30
So they’ve gone in, and they’ve minimally invasively attended to the hole in the heart that’s been closed over, so to speak. And now, at least from a hole in the heart perspective, you’re out of the risk of having another stroke with regards to the clot, right? So everything’s kind of settled, and you’re cool.

Lisa Cook 25:54
Yeah, the procedure wasn’t 100% successful, so there is a bit of a residual leak, which is annoying. I take aspirin every day for that. I mean, it’s at the in the grand scheme of things, I’m pretty scope free. Yeah, so it’s, it’s more, it’s, it’s no big deal, really. But yeah, it doesn’t mean that I can then go and, like, eat whatever I want and not exercise and, you know, go crazy.

Bill Gasiamis 26:27
You gotta remain healthy.

Lisa Cook 26:28
Absolutely for so many other reasons, other than as well reducing your stroke risk.

Bill Gasiamis 26:35
Just for general good quality of life, but also because you’ve had a stroke and you are a higher risk. So why? Why go against the grain and do the things that are going to make it potentially worse for you? That was my biggest fear, was that I do something that puts me in a situation where I cause another one, yeah, and I don’t want to. I can’t deal with that kind of what, what’s the word like?

Bill Gasiamis 27:00
I probably could, if it happened, if I was that stupid and did it like I could probably accept my responsibility at that stage, but I wanted to avoid that completely and not be that guy. So I’ve gone out of my way to not smoke, not drink, you know, not eat this, not eat that, the whole box and dice so I hear you and so you had fatigue. Yeah, they’ll leave you with any other deficits that you’re dealing with still, or what was that situation like?

Lisa Cook 27:34
I can’t like I don’t want to say I do. But over the years, I have realized that I have two things that I don’t think were there before the stroke. And one is like in the categorization of aphasia, and it’s clear that I don’t have what most people would associate with aphasia. I have a very, very, very, very, very, very mild form of it, where sometimes the word that I want to say doesn’t come out in the way I want to say it.

Lisa Cook 28:12
And when I’m typing, when I’m doing work things, I jumble up letters. Oh, I do that so much, it’s such a pain in the bum, and it gets worse the more tired I am, and it gets worse when I’m overstimulated. So I find that there are some environments, not all the time, but many times that have become, like, too overwhelming to stay in.

Lisa Cook 28:47
Like, if you’re at a concert, or you’re at a busy football game, and like, you’re on the train and you’re like, shoulder to shoulder with everyone trying to go home, or you’re at the markets and it’s really busy and there’s like a band playing, and there’s people there, and someone yelling out names for the orders, and it’s like all that kind of stuff just becomes a little bit too much to kind of your brain to sort of filter through.

Lisa Cook 29:14
And yeah, just so it decides to prioritize that rather than allowing me to speak properly?

Bill Gasiamis 29:22
Absolutely. I know that feeling. I know a lot of stroke survivors know that feeling as well. So it’s really interesting, like your path from 30 now approaching 40, if you haven’t hit the 40 mark yet, and then the role that you decided to take to I suppose you should describe that, right? So we met at a Stroke Foundation event. You are on the board of the Stroke Foundation. What’s behind the thinking of that? Why did you end up on the board?

Bill Gasiamis 29:59
I know you have got some work that you do helping people apply to be on boards, actually, first me first, tell me a little bit about the work that you do, just so we can understand the background, and then what, what was behind the idea to actually join that board, if not you’re, if you’re not involved in other boards, and even if you are, why that one like, what’s the, what’s the long term vision?

Lisa Cook 30:24
Yeah, yeah, I’ll talk through that. So I’ve sat on boards now for about 1516, years, and boards, serving on boards, was always my sort of longer term. We’ll call it career ambition. Let’s say I when I started to get into boards and into governance, I realized that there was sort of a gap to help people who were at that very first starting point on their board journey, so they may be joining the board of the local sport club or a small not for profit, or something like that.

Lisa Cook 30:59
Really how I started my board career, to really get into the boardroom and then to understand what to do once they’re there. So I have a business that works in that space, so I teach boards and board members what they’re meant to be doing and how to do that better. So I do have quite an extensive governance background and experience very soon. So let’s just park that to the side, because I’m sure your listeners do not want to go down that rabbit hole.

Lisa Cook 31:34
And fast forward to when I had my stroke. Like many of us, I wanted to just go back to normal, whatever that I just wanted to not be like I am now, and I just wanted to go back to normal. So probably no, I think I might give a bit more context. So when you have a stroke and you virtually have quote, unquote, nothing wrong with you. You get a really nice dose of survivor’s guilt.

Lisa Cook 32:05
And then once you start getting into the stroke landscape, you realize that there is no age group, there is no demographic that is untouched by stroke, right? It’s not just an old people thing. Babies can have it, and anyone in between those age groups.

Lisa Cook 32:32
So probably about so that realization, understanding it more, giving my given my governance background and experience, probably three years after my stroke, when I finally came to terms with it, and was like, Okay, this is a stroke I needed to have, because it identified that heart problem, and so now what are you going to do about it? Lisa? So I thought, well, I have a voice where others don’t.

Lisa Cook 32:58
I have a skill set and an expertise where some others don’t. And you know, you talk about my nail is, you know, business, the hammer is governance. And I thought, well, boards is how I do things. That’s my wheelhouse. That’s my interest. That’s my zone of genius, if I want to say that. So I thought, why not serve on the Stroke Foundation Board, or any sort of like stroke organization?

Lisa Cook 33:29
Obviously, the Stroke Foundation was there for me very soon after I had my stroke, just to hear from the community. Because you do feel when you’re thrust into this landscape. You think I’m young, I’m the only person who’s had this thing happen to me. You kind of feel a bit alone, and the Stroke Foundation really helped me to understand that I wasn’t alone.

Lisa Cook 33:52
And there’s a lot of people out there who have gone through what I’ve gone through, or have certainly had someone close to them go through something similar, and to help you sort of come to terms with everything, because it it is a lot to to come to terms with and accept. And so exploring how I can get myself involved with the Stroke Foundation.

Lisa Cook 34:15
And I was doing things like fundraising on my birthday, fundraising on my stroke anniversary, doing certain things like that, tangentially, reaching out to people. What else can I do? Sort of thing. Eventually it came about that there was a board position that was open that really did align with that governance experience that I have, that I’d had sort of through my board career. So it seemed like a natural moment, a natural opportunity, and so I put myself forward.

Lisa Cook 34:53
I definitely went through all of the process that any other person who was going for the opportunity. Be went through. And I do believe that having that lived experience on top of what I could bring to that board, being that governance experience really was seen to be a value to the Stroke Foundation.

Bill Gasiamis 35:19
The movement towards a lived experience of late, which is of late, probably the last two or three years from the Stroke Foundation has been amazing, because the amount of lived experience people who are being what’s the word being accessed by researchers, the Stroke Foundation, etc, to help make better programs, better research projects, etc, is phenomenal. It’s fantastic.

Bill Gasiamis 35:54
And now that there’s somebody who had a stroke on the board, like, Yeah, hello. Like, such an obvious thing, isn’t it like that a stroke survivor would be on the board of the Stroke Foundation, but I understand why that might not have been the case up until now, for example, or until you joined. But I want to go back a little bit for a sec where you spoke about your survivor’s guilt. So What’s all that about? Like, why did you feel guilty for surviving a stroke?

Lisa Cook 36:26
Yeah. Well, you hear about, you know, we hear a lot about the high profile people the the most recent one that comes to mind is Jessica Watson, who was that young lady who sailed around the world when she was 16 or so that her partner in the last handful of years had a stroke and passed away from it. So you look at two extremes. You could be someone like me, where you kind of people look at you and they say, Well, you don’t look like you’ve had astroke, which is true, and I don’t find that offensive, because I don’t look like someone who’s had a stroke.

Lisa Cook 37:05
But then you have the other extreme, where people are dying, if this does kill people, and there’s a broad, vast range of spectrum in there, from being sort of, quote unquote totally fine, and quote unquote normal to dead, and a lot of people have a lot of disabilities and chronic issues that come from experiencing a stroke. Why did I not get that? And why did that next person get that and why did that person die?

Lisa Cook 37:44
And why did that baby lose half their head like you just can’t get into it, because you’ll fall into an existential crisis. But it’s, it’s real, and I, I would feel, and probably guess, that there’s a lot of stroke survivors out there probably even ones who have disabilities and impairments from their stroke that have a degree of survivor’s guilt.

Bill Gasiamis 38:11
I agree, because I’ve interviewed a ton of them, and I’m one of them, and it was an existential crisis, and it was like, Well, how do I go about life now? And am I just gonna treat this like a stubbed toe and move on? Yeah, or what? Because I nearly died two times.

Bill Gasiamis 38:37
Well, maybe the second time really came close to if I wasn’t at hospital, probably death properly, because I blanked out when I got to emergency, and I don’t recall what happened after I announced myself and said My name’s Bill, and that’s pretty much all I remember. And then I wake up in a bed all connected and all that stuff, right?

Bill Gasiamis 39:05
And then the third time, I had brain surgery, which could cause all sorts of dramas for people. And it’s like, okay, well, I can’t possibly treat this like a stub toe. It’s far more serious than that, and it was the first thing that taught you about your mortality.

Lisa Cook 39:27
It makes you realize how thin that veil between life and death really is, and that’s so confronting. And how, how lucky, how luck plays in it as well. My mom likes to bless her, I’m sure it’s a survival mechanism. Likes to think that because I was healthy and exercising before my stroke, that that’s what meant that I didn’t get any impairments. And I have to keep telling her, no, it’s actually just luck, where. That clock decided to travel to where it landed, what it did.

Bill Gasiamis 40:04
Luck, random, explainable luck.

Lisa Cook 40:10
It’s crazy and it’s not. And then you go down the avenue of well, that that’s not fair, that’s not right. And I have to keep reminding people, this stuff isn’t about fairness. This stuff isn’t about what’s right. That’s just not how this stuff works. It’s not how it works, and that’s hard for us to take because we like to feel that we control our environment and the outcomes that we get, to a degree, especially me.

Bill Gasiamis 40:42
Bit of a control freak. Is that? Was that a type A personality?

Lisa Cook 40:46
Yeah, fair enough.

Bill Gasiamis 40:48
I had the existential crisis, and then it was about, well, you’ve learned a little bit on this journey. You gotta do something about it. You know, your there’s no point bitching and moaning about all the deficits that you live with, numbness, fatigue, a little bit of spasticity, muscle tightness, some dizziness, every once in a while, migraines. Now there’s no point whinging about it you’re you feel alone, so just go find people you need to learn more.

Bill Gasiamis 41:23
So why don’t you go and reach out to as many people as you can? Hence, the podcast, the book, the whole box and dice, everything that became the recovery after stroke community, the YouTube channel, etc. And that brought a lot of purpose and meaning. That’s kind of what came from it, purpose and meaning that I didn’t have, which I added to my already purposeful and meaningful life of being a dad and a husband.

Bill Gasiamis 41:53
That was a very shallow version of what purpose and meaning is not that it’s not a cool cause, it’s an amazing cause, but it’s a very narrow cause, like, it’s a small niche in what purpose and meaning could be about, right? And then it was also about, well, I can sit a really good example here to my loved ones, family, friends, whoever, about how you tackle a massive existential crisis.

Bill Gasiamis 42:17
You know what you do and how you make the most of the second chances that you’ve been given, or the opportunities you’ve been given that you didn’t know could be taken away from you, right? And I feel like that’s also what you’re doing by attending to to in your way, make somehow a difference in the community that you were selected to be a part of by randomness that you didn’t really choose to be a part of.

Lisa Cook 42:53
Yeah, that’s a lot of what it is there’s there comes a point. And I feel like this is a lot of people you talked about how the foundation really taps into the lived experience and those amazing people that step forward because it is hard, and it is hard if you’re constantly the one being drawn on for that lived experience to really represent, represent such a broad array of of people and experiences and outcomes, and everyone has because it’s the brain.

Lisa Cook 43:25
Everyone’s got their own unique, different experience. It’s hard to to encapsulate that through like one person or a small group of people, but what drives those people to step forward, even though it is hard because you’re reliving that trauma every single time you talk about it, is that desire to make it mean something I can’t have gone through this harrowing experience just to like you said, treat it like a stub toe. Go, okay?

Lisa Cook 44:01
It’s the next day. Now, whatever’s on with life, which, if that’s you listening, and that’s how you’ve dealt with having a stroke, that is, you do what you have to do, right? Like, cool, there’s no, there’s no right or wrong way to to recover after stroke. But that whole sense of which, I think is a human condition, our desire to give meaning to something, to make meaning from what has gone on.

Bill Gasiamis 44:36
It’s to wrap the head around that somehow, and then to go, Okay, I’m gonna, I’m gonna make it mean more than what it meant, which was, I think that’s what it is for me. It meant You nearly died. And it’s like, I’m gonna make it mean more than that. That’s not good enough. That’s, I don’t want to contemplate that so often that I nearly did. And make it I am probably a lot more comfortable with the idea of death these days, but still, I’m not really keen to just think about it as a oh, well, you nearly it all nearly almost died, you know?

Bill Gasiamis 45:12
So I remember, just a couple of weeks ago, I posted a vlog, my first vlog, where I spoke about my fatigue and all the challenges that I was going through. I posted it on YouTube, and it’s been really popular, and people commented, and there was a person who come and I did the vlog walking around my neighborhood, just talking because I was having a bad day. Yeah, and somebody commented, and I don’t know where in their recovery journey they are that they will never walk like I am walking around right after their stroke.

Bill Gasiamis 45:49
And it’s like, Thanks for the reminder. Yeah, pretty jarring to hear that again from another stroke survivor and and it’s like, I totally get my opportunity. And why I am, I don’t know. Maybe this is the dumb way to explain it. Luckier than you in that particular situation, okay, I’m able to walk in your not, even though I have deficits. However, I don’t from that. From that person’s perspective, maybe they’re early on in their recovery.

Bill Gasiamis 46:30
Maybe they haven’t dealt with certain things enough yet. What I want to say to people like that is, well, that might be the case, but there’s no reason why you can’t experience a full life either, and there’s no reason why you should just give up at that stage and not continue to look for ways to improve your life. Yeah, I don’t know, and don’t let me be or the doctor or anyone else be the judge of to what extent you’re going to live your life, you know.

Bill Gasiamis 46:58
And I always go back to Stephen Hawking, you know, the great physicist who was completely and totally disabled because of his motor neurons disease, I believe it was called, and still was, the leading physicist in his field, until the day he died, and the majority of his life he spent not even Being able to move anything other than his eyes. Yeah, and it’s like, I know you’re doing a tough and at the same time, I want to remind you that there are other people who are doing it as tough, if not worse than you.

Bill Gasiamis 47:33
And I don’t know if there’s anyone doing it tougher than somebody like Stephen Hawking and And nonetheless, has lived an extraordinary life according to the majority of the population and the people who met them, right? So I I hear what you’re saying and I accept your comment, and it is a great reminder about my responsibility to continue doing the work that I’m doing to make it easier for people like you, I’m going to advocate for me, for the person on the other side of the screen, and for you who I’ve never met before.

Bill Gasiamis 48:05
I suppose, if that makes it any better, I hope that that helps you know, I think that that’s my responsibility, like I don’t know. That’s how I try and grapple with comments like that and people’s journeys with the very debilitating parts of stroke, way more debilitating than my little whinge that particular day.

Lisa Cook 48:31
I think it’s all relative, and feel like it’s absolutely 100% normal to be angry, to be angry at what happened, especially because with something like stroke, it’s not like you’re given a warning. It’s not like it’s coming in in 12 months, like get prepared to live your life completely different. It’s literally blink of an eye. Old life gone, new life. Here we are, and you’ve got no time to adjust. So all this stuff compounds.

Lisa Cook 49:06
And like we said, how you experience stroke is different to how I experience stroke is different to this guy that made this comment, experience stroke none is is right or wrong, or better or worse, or anything like that, like I often feel at times that people, and I’ve never had anyone, do anything or say anything to me that would make me feel like this. This is my issue, that I’m like, I haven’t done stroke, right? Because I’m not impaired physically, like people will look at me and just go, what would she know? She’s fine, she’s normal. She doesn’t look like she’s had a stroke, and that plays on it as well.

Lisa Cook 49:46
It’s like, well, you know, let’s talk about the psychological impacts of having a stroke. And chances are, our psychological journey has been very similar, yeah, in a lot of things. But it is all relative. We can’t look at someone and go, Yeah, but you’re you’ve got it so much better than me. Yeah, okay, maybe I do in some aspects, but you don’t know the whole picture of someone. You don’t know the whole thing.

Lisa Cook 50:12
And just because Bill’s at this stage with this outcome from a stroke, and you’re at that stage with that outcome from a stroke. It doesn’t mean that bill’s luckier than you or different than you, or better or worse. Or, like, you’ve just gotta see it that it’s all relative. Everyone’s on their own journey. And like, you were emphasizing it really is your choice at the end of the day, of like, what do you do with this, okay, you’ve been served up this real crab cake.

Lisa Cook 50:44
But then what you choose and decide to do next really is up to you, and no one can take that away. Stroke can’t take that away. You still have your own vocation, right? You can choose to do and react however you like. If that helps.

Bill Gasiamis 51:06
It all helps. The whole conversation helps. And it’s not that, you know, it’s just that it’s good because it makes me contemplate things from somebody else’s perspective and the part of the journey that they’re on. You know, the hardest part when people see me doing a vlog 13 years post stroke, I mean, that’s it’s been a long a lot of water under the bridge to get to today, and you’re looking at the vlog and You’re going, Ah, I should be that recovered.

Bill Gasiamis 51:41
Or, why is he so well? Or how did he get to that so quickly? It’s like, man, it’s been 13 years of ups and downs and wondering whether I’m having another stroke and having an actual another one, and having brain surgery and not being able to walk and learning how to walk again, and not being able to work, and not being able to be a regular member of society, like the whole thing has been dramatic, and having emotional challenges like I’ve never had before, and psychological challenges and counseling and all that kind of stuff.

Bill Gasiamis 51:55
And that’s the biggest challenge I have, is like my you know you can’t wear all your badges all at once because people wouldn’t be able to read them anyway, but also, you have to just present yourself at the stage that you’re at, and that’s really important, so to try and every so often, explain to people or remind people about that I’m presenting myself at the stage I’m at when I was much sicker.

Bill Gasiamis 52:43
I couldn’t do a vlog, I couldn’t do a post, I couldn’t have a podcast, I couldn’t write a book, I couldn’t read or type or do any of that stuff. So we’re at that stage so many years down the track, and I’m just trying to go, I’m going to get you to engage with me in any way I possibly can so that I can teach you something, and maybe if what I’ve done to you now 13 years out is remind you of like where you might be in 13 years, or how your 13 year journey from your two year part of the journey is completely different, maybe even that’s a Cool thing, I just did that, and hopefully that’s going to help you.

Lisa Cook 53:25
Yeah, if not a reminder that time is going to pass, whether you want to be angry about it or not, the time is still going to pass.

Bill Gasiamis 53:37
Yeah, it sure will. And it passed so quick. Even though it feels like forever, it also feels like forever, and at the blink of an eye, I just can’t wrap my head around how there’s been this warped experience of my timeframe, like it’s so weird, and when I talk about it, I’m right there back then. I’m not reliving it, though, because I think after 350 episodes of just talking forever about it.

Bill Gasiamis 54:10
I’ve stopped reliving it, and I’m more remembering my remembering when I share it, rather than reliving it. But I have had a few crying moments when I’m having a bad day or whatever, and it’s related to the stroke. It’s still related to that. But it’s not about what happened to me. It’s about on my the difficulty of my yeah, that particular day.

Lisa Cook 54:39
Yeah, and just being upset that everything’s now a little bit harder, right? Yeah? Like, come on, man, you know, I think that’s totally normal. I think that’s totally normal.

Bill Gasiamis 54:52
Yeah, yeah, what would you say was the hardest thing about stroke for you?

Lisa Cook 55:01
I think just accepting, accepting that I can’t go back to normal, normal is a figment of your imagination. Now, there’s a different normal, and how can we thrive, given where we are now, like what you were talking about 13 years out. I’m nearly 10 years out, what thriving looks for me now, obviously could never have been what thriving would look for me in the six months, 12 months. You know, I said it took three years to really come to terms with it and accept it and go, Okay, we’re going to put the line in the sand. Now. What do we do about it? Yeah, that was probably the hardest part.

Bill Gasiamis 55:47
And what would you say it has taught you, you know, like, really taught you.

Lisa Cook 56:00
I have a funny thing happened to me after I had my stroke. I used to so before stroke, I used to be really scared of flying, right airplane. Fear of flying, very normal. A lot of people have it. After I had my stroke, my brain was like, you cannot have survived a stroke only to die in a plane crash. So now I’m fine on an airplane. So I don’t know how that works. That’s just how the brain is thinking. And yeah, that’s what’s come about from it.

Bill Gasiamis 56:43
That sounds like the lightning doesn’t strike in the same place twice.

Lisa Cook 56:52
Relying on that now. So touch wood.

Bill Gasiamis 56:56
Flying is the safest form of transportation.

Lisa Cook 56:59
Look, you could ask me to rationalize until the cows come home, but that emotional, like response that I would get just, it’s irrational, yeah.

Bill Gasiamis 57:04
It’s also irrational because there’s like, I don’t know how many tons is an airplane, and that shouldn’t be floating in the air.

Lisa Cook 57:23
So you, you know you can then research into how power planes actually flying, like how does the physics under it, the physics of flying and that that can help you to feel more comfort in it as well. So, but yeah, or you can have a stroke.

Bill Gasiamis 57:46
You get over it for it.

Lisa Cook 57:49
So what it taught me is maybe the things that you’re scared of, like actually aren’t that scary relative to so I guess you can get a new set point. And part of me feels like, I feel like everyone at one point in their life will have a near death experience.

Lisa Cook 58:12
And I feel like for some of us, we were kind of lucky enough to have that early enough in our life that we could then really change how we think and feel about things, and then about what we do and what we can and can do, like we might do, things that past us would think are a bit scary, and I’m not sure I want to do that, whereas now we’re Like, really, how bad can it freaking be?

Bill Gasiamis 58:43
I before stroke was a tradie, still have that business, and I’m painting people’s houses, you know. And I don’t talk on a podcast, I don’t interview people, I don’t write a book, I don’t do public speaking, I don’t do presentations, I don’t involve myself with communities other than the very close community that I hang out with, family, friends, etc. It’s a completely different version of me after stroke, and that’s one that most people wouldn’t recognize.

Bill Gasiamis 59:16
They would that people that knew me wouldn’t recognize it, but they would encourage it. They would say, yeah, that was cool, what you’re doing, and it’s great to see. And they would support it, but they wouldn’t recognize it. I don’t recognize myself. I don’t even know how I got into this situation and why I took each step that I took, other than every time I took it. I learned something new. The curiosity got the better of me and and I think I approached after stroke from a curiosity mindset. And curiosity killed the cat, but satisfaction brought it back, you know.

Lisa Cook 59:56
I agree with that 100% And I feel like so many others on their stroke journey would probably have the same reflections as well. If you were to think of because a lot of people who haven’t had a stroke will look at those stroke survivors, particularly the ones that have impairments, disabilities, and it looks like they’re struggling, you would think crap. I could never cope with that.

Lisa Cook 1:00:26
If that was to happen to me, I think I would fall apart. But when you’re not given a choice but to survive, but to find a way to thrive, whatever that means for you, you actually realize the potential that you actually do have. And yeah, those people that may not have had something so traumatic happen in their life, maybe they are not reaching their full potential and are underplaying what they could be doing.

Bill Gasiamis 1:01:00
Yeah, and great good luck to them. I hope that they get to that stage without a stroke or a heart condition or something else, right? That’s, you know? Yeah, We’ll root for them to either get there or not get there however they want, but without a medical situation. But that’s how thick I am.

Lisa Cook 1:01:23
Yeah why do we need that trauma to to get us to that point?

Bill Gasiamis 1:01:29
That’s how thick I was. Like, I needed to have all of this stuff happened for me to find my voice. And I’m okay with it, but it was, it is interesting to contemplate. You know, from a philosophical perspective, it’s like, yeah, why did you have to go to that much trouble? Yes, the outcome that you have, and it’s like, you’ve always done things the hard way, but this is pretty hard I mean, really.

Lisa Cook 1:01:55
This is extreme. Yes, it’s so funny. I feel like I have to, like, you have to hit rock bottom before you can kind of get better. I feel like that’s like a pattern in so many areas of my life. But I feel like that then maybe puts the burden of responsibility on us that we gave ourselves a stroke, whereas that’s not, I mean, what caused yours? Do you know?

Bill Gasiamis 1:02:21
Well, a faulty blood vessel that I was born with an arteriovenous malformation, right? That stays benign, or every once in a while for people, many people, it pops. And you might not have it in your brain, you might have it somewhere else in your body.

Bill Gasiamis 1:02:36
So mine was just in my brain, and it did nothing for 37 years and then, I do say, though, that I still created the perfect storm around it, smoking, not drinking excessively, but drinking, stressing out at work too much, probably working 16 hours a day because I was a bit of a control freak.

Bill Gasiamis 1:03:02
I didn’t want to outsource things to other people. I didn’t seek the help that I should have, you know, so I created the perfect storm around this blood vessel so that it doesn’t have the support that it needed to not pop. And people we find ourselves in that situation in life. Sometime we put ourselves under undue pressure, and I was really good at doing that. I’m less.

Bill Gasiamis 1:03:29
I do that less these days, but it was I realized very quickly as well that I can’t continue going about my life in the same way that I had, because it wasn’t, it wasn’t going to be conducive to a good outcome, whether it was heart attack or high blood pressure or something else. So that’s kind of how I got to that stage. I wanted to as we wrap up, I wanted to ask you one last question.

Bill Gasiamis 1:04:00
So people are listening here, and you and I, we’ve been on our journey for a little while, and they’re probably looking for some guidance, some wisdom, some nugget, on short notice, I know. And putting you the under pressure, a little bit under the microscope. What do you want to tell people who are listening who are perhaps a little bit earlier on in their journey compared to us.

Lisa Cook 1:04:28
The thing that came to mind, Bill was that it gets better. It gets better. It’s you’re not going to go back to what was beforehand. I think that’s having gone through that and wanted that, and realizing it’s not going to happen. It’s not going to happen. So work on accepting that as much as you can. There’s no, like we said, there’s no right way or wrong way to really process come. To terms with it and recover, but it does get better.

Bill Gasiamis 1:05:05
I would agree with that. And the acute phase is the worst phase. And I think for me, one of the things that it was good for me to remember was that the acute phase lasted years. It didn’t, Yes, last only two weeks or three months or six months. The acute phase lasted years. And I’ve gotta say for me, I reckon the acute phase lasted about three and a half years, four years, something like that.

Bill Gasiamis 1:05:35
Yeah, and and then I started to turn the corner. But by then I had dialed in my nutrition. I had dialed in, you know, my my inner work. I had done a lot of meditation and psychological counseling, you know, so I had dialed in a lot of things. And that is kind of what made me move the needle to in my favor further than where it was before.

Lisa Cook 1:06:08
And ask for help.

Bill Gasiamis 1:06:10
Yeah, that is a beauty, actually. Yeah, and we’ll end on that one. Thank you so much for joining me on the podcast. I really appreciate the chat.

Lisa Cook 1:06:18
Yeah, thanks, Bill. I’m really glad that you’ve given me the opportunity to share my story.

Bill Gasiamis 1:06:24
Well, that brings us to the end of this moving episode with Lisa from being misdiagnosed after a thalamic ischemic stroke to facing extreme fatigue, uncovering a PFO and confronting survivor’s guilt. Lisa’s journey reminds us that recovery isn’t just about what’s visible. It’s about navigating the internal landscape too. Her courage to share, serve and advocate, especially through her role on the Stroke Foundation Board, shows just how powerful lived experience can be.

Bill Gasiamis 1:06:57
If today’s episode resonated with you, I’d love to hear from you, leave a comment, like and subscribe on the YouTube channel, and if you’re listening on Spotify or iTunes, consider leaving a five-star rating. It would mean the world to me. It also helps more stroke survivors discover the podcast and join this supportive community. Remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. You can find it on Amazon or by visiting recoveryafterstroke.com/book, and if you’d like to support the podcast directly, head over to patreon.com/recoveryafterstroke. Thank you so much for being here and for making this podcast part of your journey. I’ll see you in the next episode.

Intro 1:07:42
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