Recovery After Stroke

By Recovery After StrokeEducation

Recovery After Stroke episodes

February 27, 2023 Addiction Diabetes And Stroke – Loyd James Fox III
In this episode of the Recovery After Stroke Podcast, you’ll hear how Loyd navigated the intersection of addiction, diabetes and stroke and how he found the strength to overcome adversity. This is a must-watch for anyone facing similar struggles or looking for inspiration on their own journey towards recovery.
Highlights:
00:54 Introduction
04:09 The Off And On Stroke Symptoms
12:20 The Five Foods To Avoid After A Stroke Course
16:33 The ER Doctor The I Disliked The Most
24:09 What It’s Like Being On The Other Side?
26:40 Laughter Is The Best Medicine
33:49 Addiction Diabetes And Stroke
45:14 Gratitude And Forgiveness
53:19 The Hyperbaric Chamber And How It Works
1:04:04 Finding New Perspective: Life After a Stroke
1:11:09 Finding Your Tribe
Transcription:
Loyd James Fox III 0:00
I’ve got this doctor who’s doing the stroke scale on me. And he’s asking me if I can see his fingers wiggling. And I’m trying to tell him. No. But I have history of diabetic neuropathy with laser surgery on my retinas. That has ruined my peripheral vision. So I couldn’t tell you if I was having a visual stroke. Because I can’t see until about here. He wasn’t listening to me. I’m probably sure the bill is gonna be huge for a doctor that did nothing for me. Just weightless fingers.
Intro 0:41
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Loyd James Fox III

Bill Gasiamis 0:54
Hello, and welcome once again to the recovery after stroke podcast. This is episode 239. And my guest today is nurse, Jim Fox. In our discussion we discuss Jim’s journey of living with type one diabetes, overcoming addiction and healing after an ischemic stroke. Jim Fox, welcome to the podcast.
Loyd James Fox III 1:15
Hello, how are you?
Bill Gasiamis 1:17
I’m well thank you, Jim, tell me a little bit about what happened to you.
Loyd James Fox III 1:24
November 13th, of 2022. I woke up, started a fire by woodstove. And then I went back to bed. And then I woke up, tried to use my cell phone. And I wasn’t able to use fine motor control to type in a message to my wife good morning, because my wife’s a registered nurse also, we’re both nurses. So she works at an ICU I used to work in ER. So we’ve got a little bit of history medicine.
Bill Gasiamis 2:09
So you couldn’t type the good morning message?
Loyd James Fox III 2:14
I could not know. At the time, I realized that I was having problems with speaking too I was going to talk to my dog of all things. And I was garbled. So I knew at that time that I was having a stroke. I absolutely knew it. So I got up, try to call 911. And the thing about it was is that I didn’t even attempt to use my left hand it was my right hand that I had the stroke in so on my right side.
Bill Gasiamis 3:03
It didn’t occur to you to just swap over the hands for a moment.
Loyd James Fox III 3:07
No. So the kicker is that I was having a stroke throughout the day before. So it was coming and going, so I went to lunch from work got to my truck. And when I got out to the street, I pushed on the gas pedal. And you wouldn’t think that there’s fine motor control with your gas pedal.
Loyd James Fox III 3:40
But I pushed my foot down and the truck jumped out in the street. And when I went to turn the wheel, it slipped out of my hand. So I had to grab it with my left hand. And then I was able to grab it with both hands and then figure out like what the heck is wrong with my truck?
Bill Gasiamis 4:08
It was the truck.
The Off And On Stroke Symptoms of Loyd James Fox III
Loyd James Fox III 4:09
It was the truck. And I’ve heard you talk to other people on your podcasts about how they drove and it was always something else. Look, I’ve been trained in emergency medicine certified emergency room nurse trained in the NIH Stroke Scale, Cincinnati Stroke Scale educated. I drove home, once I got home, the symptoms resolved.
Loyd James Fox III 4:43
So it was coming and going. Had lunch, drove back to work. And then it was my pen. I didn’t put two and two together. My didn’t wasn’t writing, I wasn’t writing with my right hand. So often on off and on, I currently work as a dialysis nurse. And I was getting patients off. And when I got out of my chair, I stumbled.
Loyd James Fox III 5:25
And it just went from there. I had a little slurred speech, but I’m a type one diabetic also. So I have symptoms like that when my blood sugar’s low. So I had something to eat. The speech went away, I went home, and I was really tired. Mind you, I get up at 3am to go to work at 4am and then work a 12 hour shift and come home.
Loyd James Fox III 6:00
Came home went sat the backyard. I mean, it was like 55 degrees out and I just sat there just thinking, what is wrong? I had this feeling of doom. I have this feeling of I’ve never told my wife this. So she probably gonna watch this and listen and go Oh, shit. So I went to bed, and I slept all night. And I got up the next morning, my wife had gotten to work. She got up at 5:45 to be at work at seven o’clock. And she was at work. I couldn’t call 911 so she called 911.
Bill Gasiamis 6:50
Hang on a sec. How did that happen, though? Because you couldn’t type the message to her. You couldn’t speak to the dog, how did she actually understand what was happening?
Loyd James Fox III 7:04
So in the middle of that, I know I’m kind of piecemeal, my brain is still just, this is so new.
Bill Gasiamis 7:15
So I’ll guide you.
Loyd James Fox III 7:21
In the middle of it, I was able to type a message to her. By that time, I switched to my left hand. And I texted her stroke. And my son who’s 16 comes out of the room. Just before all that. And he said good morning and I’m kind of grumpy in the morning anyways.
Loyd James Fox III 7:59
And I grumbled at him. I said good morning, but it was a grumble because I was slurred speech. So went into the kitchen, got something to eat, went back to his bedroom. And then he came out with his phone and said Mom wants you to smile. And at that point, I smiled and was able to speak kind of smiled, stuck my tongue out, put my arms out. You put your arms out one way and then you hold them up and you’ve been through the deal.
Bill Gasiamis 8:39
The stroke test.
Loyd James Fox III 8:41
So she said I called 911. So, the ambulance gets here, the fire truck gets here. I’m not sure if they do that in Australia.
Bill Gasiamis 8:58
They don’t but we’re very familiar with the fact that you guys have your fire trucks loaded with paramedics I believe.
Loyd James Fox III 9:07
Some places have paramedics. I’m not sure about city of Shasta Lake, I’m not even sure if it was the city of Redding or the city of Shasta Lake that developed I live right on a line of cities on I could throw a rock at the city of Redding and I have Shasta Lake on the other side where I live.
Loyd James Fox III 9:29
So it could have been one or the other. So we have them i i squeezed their hands. I did hold my hands out and then the ambulance drove up just after the firetruck got there. I walk out to them was having weakness in my left leg. But I was able to control it kind of you know because I can’t believe I did it. I just, I walked out there, I could have fallen and hit my head and ended up with the bleed. But I’m so stupid.
Bill Gasiamis 10:11
You’re normal, it’s what we all did. There’s so many stroke survivors have done something like that. But I get it, I get that comment that you made about yourself, you know, you’re so stupid, but you’re having a stroke, like, it’s okay. You know, your brain is not really working the way that it needs to be.
Bill Gasiamis 10:32
But there is another part of you. That’s work. And that’s the part that’s getting you moving to go towards help, right? So you are being proactive towards your support and your recovery because you’re moving towards help you’ve done all the right things, even though they’ve been in a haphazard way. Or they haven’t been efficient or whatever they haven’t been.
Bill Gasiamis 10:56
They’re still all the right things, you know, stroke, you typed you became involved in that part of the process, which was you know, to test whether you’re having a stroke or not the FAST signs that everyone took you through and then you walked towards the ambulance if you had fallen, maybe you would have tripped maybe you wouldn’t have hit your head.
Bill Gasiamis 11:23
If you had blacked out and fallen. You might have hit your head and then that would have been really dramatic. But you didn’t so don’t worry about it. You got there. And now you’re about to enter the ambulance. Right? Is that what’s happening or are you waiting for the ambulance to arrive because the fire guys are there?
Loyd James Fox III 11:42
I mean, they it was like the fire truck stop parked, they got out, they tested me. For what little they know. And then the ambulance pulled in and the EMT got out, opened the door the paramedic pulled the gurney out and set me down on it got me in the truck. My cute little neighbors come out. Like they’re crying. Oh my god. They’re so cute. Carl and Janet. I’ve been neighbors with them for 23 years.
The Five Foods To Avoid After A Stroke
Bill Gasiamis 12:20
Hi, everyone. Just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. So I developed a course The Five Foods To Avoid After A Stroke. While most people are talking about what to eat after stroke to support brain health and recovery. Very few are talking about what you should avoid eating after stroke.
Bill Gasiamis 12:43
If you want to support your brain to heal and you are curious about the five foods that may make matters worse, when you consume them, then this course may be for you. In the fun five series of interviews, you’ll hear about what foods not to eat after stroke. But most importantly, why the interviews are done with a qualified nutritionist Stacy Turner and performance coach Matthias Turner.
Bill Gasiamis 13:07
In the more than five hours of interviews we discussed the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how that could make fatigue worse. For just $49. This five part series of more than eight hours of interviews will with full PDF transcripts. mp3 and videos will give you everything you need to know about the foods to avoid and why the modules include eight reasons to quit sugar after stroke.
Bill Gasiamis 13:37
Seven reasons to quit caffeine after stroke. Eight reasons to quit gluten after stroke, Six reasons to quit dairy after stroke, and six reasons to quit alcohol after stroke. So visit recoveryafterstroke.com/courses. For this and other specifically designed courses that are made by a stroke survivor for stroke survivors. Once again, you’ll get more than eight hours of content.
Bill Gasiamis 14:03
All audio is downloadable in mp3 format so you can listen on the go. full transcripts of all the content to take notes on are available for download or so that you can read instead of listen presented by a stroke survivor for stroke survivors. also presented by a trained nutritionist and performance coach. You’ll get 24-hour access lifetime access to the courses purchased and you’ll be able to interact with me in the comments section. Go to recoveryafterstroke.com and check them out now.
Loyd James Fox III 14:39
So they were crying and said you’re gonna be okay. I’ve had a stroke before Carl said you can get through this. So, we get to the ambulance, they put an IV in me they they put the EKG on me, they don’t put oxygen on, they stopped doing that. But they did all the other stuff. They didn’t give me aspirin because.
Loyd James Fox III 15:13
They couldn’t tell that I was having a bleed or if I was having a clot. Yep. So ischemic stroke versus clot, so got to the emergency room. And my wife’s there. My daughter’s there. I have no idea how my daughter got there. But she was there. And then the intensivist was there. Because my wife is friends with the intensivist.
Loyd James Fox III 15:48
What’s an intensivist?
Loyd James Fox III 15:53
The only work she does, is an intensive care, Doctor. So, I’ve got, I’ve got an ICU nurse, I’ve got an intensivist there. And please forgive me. But I’m gonna say, I get the doctor that I disliked the most out of all the doctors I’ve ever worked in, in the emergency room that I worked in that I helped run. And here this guy is.
Bill Gasiamis 16:28
And now and now that’s on your mind when all this other stuff is happening.
The ER Doctor That Loyd James Fox III Disliked The Most
Loyd James Fox III 16:33
All this other stuff is happening. And now I’ve got this doctor who’s doing the stroke scale on me. And he’s asking me if I can see his fingers wiggling. And I’m trying to tell him. No, but I have history of diabetic neuropathy with laser surgery on my retinas. That has ruined my peripheral vision. So I couldn’t tell you if I was having a visual stroke. Because I can’t see until about here.
Loyd James Fox III 17:16
He wasn’t listening to me, I’m probably sure the bill’s gonna be huge for a doctor that did nothing for me. Just wiggled his fingers. But I got to the CT scanner. The neuro intensive care doctor that retrieves clots has been called in the CT scanner. I mean, I got the best care on the planet waiting for me I’ve got the A team.
Loyd James Fox III 17:53
They do the scan, they they kiss me die. They do this scan, and then they do another scan with an IV dye. And my wife comes back into tell me that it’s not a bleed. But the doctor wants to look at the scans as they go through. So I have a we have a carotid artery that comes off our neck.
Loyd James Fox III 18:25
The vain there’s two lines, the M1 is the first vessel that comes off the carotid on my left side is 90% occluded. So they decide that since I woke up with the stroke, I can’t give them a time exactly that we’re not going to do the TPA.
Bill Gasiamis 18:58
Too many hours have passed.
Loyd James Fox III 19:00
So many hours have passed. They couldn’t tell. But the problem being was that the risk outweighed the benefits for the little symptoms that I had. Give the TPA, blow blood vessel, end up vegetable. Will treat you medically, you’re talking you’re walking I was able to transfer from the CT scanner table to the ER gurney so I’ve gone from the paramedics Gurney to the ER gurney, back to the emergency room. And still it’s just so much it’s like oh my God, this is really happening. So much is going on. So many things going through my brain.
Bill Gasiamis 20:05
Yeah.
Loyd James Fox III 20:07
So at this point, my speech is very slurred. I can agree with them I can. People are telling you that my speech isn’t as bad as it could be. So we get transferred to the ICU. And we’re going to do an MRI scan the next day. So I’m being admitted for observation. I’m going to start on Plavix, they gave me aspirin. I’m not sure if they gave me Lovenox or not. So much going on.
Loyd James Fox III 20:55
So we did that, we’re doing all all of the hourly stroke stuff. But my wife has to go home, she’s got to get some sleep. She’s been up all day. And now it’s 11 o’clock at night, the days just flown by. And I give her a kiss and she goes home. My kids are all gone. It’s just me. And in this ICU room, the monitors is beeping, my blood pressure’s 190 over 106. So it’s called permissive hypertension.
Bill Gasiamis 21:44
What does it mean?
Loyd James Fox III 21:48
That means that we don’t want to change one’s blood pressure too fast, because your blood pressure’s high for a reason. Our bodies do stuff. Not because it wants to because it’s trying to get as much blood to my brain as possible. Increase the pressure, get the blood in there. So at this point, I’m slurring still. And like shit, so I take my phone out. I got earbuds in and I start playing music.
Loyd James Fox III 22:34
I can’t even remember what music. Maybe it was pink that I was listening to. And I’m a big fan of Pink. She’s way cool. I’m 54 years old. And I’m listening to Pink. Right? And about halfway through the first song. This is weird. I start singing. I can sing the words to the music I know. But I’m having trouble with words. Forming to tell people how I’m feeling or how I’m doing.
Bill Gasiamis 23:18
Wow. But you can sing the song and you can’t speak under normal circumstances as we are speaking now. But you can sing a song you’re probably a terrible singer I don’t imagine you’re. But , nonetheless you do something that resembles singing.
Loyd James Fox III 23:38
I’m not singing way out loud, like Pink does. But I’m mouthing the words and it’s coming out of my mouth. And I’m like, this is weird. So I told the nurse this. And she said, Well, I guess that’s a plus. Right? You know, it’s now three o’clock in the morning. And I’m not slept. Actually. I’m not going to sleep all night. I just can’t.
What It’s Like Being On The Other Side?
Bill Gasiamis 24:09
What’s it like Jim? What’s it like to be on the other side of the hospital bed? You’re the guy that goes around and cares for people and make sure they’re well, and now you find yourself on the receiving end of that care as a patient. Did you ever in your wildest dreams, imagine that you one day might be a patient in the hospital where you’re so familiar?
Loyd James Fox III 24:39
Yes.
Bill Gasiamis 24:40
You did? It had crossed your mind?
Loyd James Fox III 24:45
The thing about it is is I didn’t think it would be my brain. Okay, I thought it would be my heart. I’ve been a diabetic since 1976. I was diagnosed when I was nine. Look, I’ve taken care of lots of diabetics. I knew that it was gonna happen. I just did, living every moment that I can, as best I can.
Loyd James Fox III 25:20
I’m telling you that the sunny and roses and, you know, rainbows coming out of my butthole. And, you know, it’s not like that I’m a normal human being I can be crabby. If my blood sugars are high, I can be an asshole. If my blood sugars are low, I can be violent. It’s the diabetes.
Bill Gasiamis 25:49
Okay. So when you find yourself in that situation, is it comforting to know the medical stuff that you know about what they’re doing next and how they’re going about this? Is that good? Or are you overthinking the negative side of that because you’ve seen the some of the you know, some of the bad luck stories?
Loyd James Fox III 26:19
Bad luck stories. I’ve seen ugly, awful, horrible, things. I don’t sleep because of those ugly, awful, horrible, things. If you want to call in the middle of the night, I’ll be awake.
Laughter Is The Best Medicine
Bill Gasiamis 26:42
Are you generally a positive outlook kind of guy, or are you not that way inclined? I’m just trying to get a sense of what a nurse who has your history in helping other people and what you’ve seen goes about thinking about their own experience with a life threatening situation?
Loyd James Fox III 27:05
I know for a fact that I’m going to die. Right? We’re all gonna die. It’s part of the deal. I know things, I know that the worst things can happen. I always try to be upbeat and happy and joke and laugh, because I truly think there’s really no better medicine than laughter.
Intro 27:44
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind.
Intro 27:53
Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 28:08
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 28:27
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recovery after stroke.com and download the guide. It’s free.
Loyd James Fox III 28:47
Some of the stuff that I’ve seen and help people through to be able to laugh with them and joke with them. To get them through it helps. That in the question about the bed, a hospital bed.
Loyd James Fox III 29:08
I grew up in a pediatric ward at the same hospital that I’m in now. Lots of of the time in the hospital. Hospital experience as a patient 100%. You know, I I’ve heard you talk about how you went in for your surgery how you went in as the best patient that they’d ever seen right?
Bill Gasiamis 29:37
That was my intention.
Loyd James Fox III 29:39
That’s it. When I’m in the hospital, I’ll be the best patient you’ve ever had. I’ll be nice. I’ll be cooperative. I’ll let you do what you need done. I will go beyond what needs to be done. And so the part about being under the other side of the bed is it’s scary. It is scary. It’s what it is.
Bill Gasiamis 30:19
I hear you, I get what you’re saying in that you’re expressing it differently to most other stroke survivors who have had a stroke who are not in the medical field who are not caregivers who are not nurses.
Bill Gasiamis 30:37
You know, most other stroke survivors go down the path of they can clearly tell me the you know, it was the time when they realized they were mortal. It was a difficult time it was all of this.
Bill Gasiamis 30:46
And they didn’t have that, that years of experience of seeing good outcomes and seeing negative outcomes and seeing people pass away and the rest of it.
Bill Gasiamis 30:54
So we’re not programmed to know that that’s part of life. So when it comes our way, it’s like, oh, this is unexpected, I didn’t expect that this would ever happen to me.
Bill Gasiamis 31:15
Your experience is extremely interesting to me to listen to because you’re a diabetic patient, because you’re a nurse, you’ve got a whole much broader range of knowledge and information about a topic like stroke than the average person.
Bill Gasiamis 31:40
And your approach is really what is it? I mean, for me listening to your approach about we’re all going to die and all that, it’s kind of comforting, even though you’re very gently matter of fact.
Bill Gasiamis 31:57
It’s still kind of comforting to see that from you and to know what you know, and to have been through what you have, you seem to have an acceptance that most people don’t have.
Bill Gasiamis 32:13
And it’s a great skill, and it’s why I’m going there to try and understand it. Right. It’s acceptance. I feel like that’s what it is, would you describe it as acceptance?
Loyd James Fox III 32:22
It’s, acceptance, with a lot of gratitude in involved. Because in 2010, and this is going to be an interesting story. 2010 my father had a massive stroke. So I have a familial history of stroke also. Massive stroke, intubated, they didn’t know where his family was when he had the stroke, and it took a couple days.
Loyd James Fox III 33:06
And of all the things a girl I dated, when I first got my nursing license, was working in the ICU and saw my dad’s name. And my dad was Lloyd James Fox Jr. My legal name is Lloyd James Fox III.
Loyd James Fox III 33:27
So they found out that it was my dad, they called my house. I was in the mountains, camping with my five year old son, who was just about ready to go to the kindergartens.
Addiction, Diabetes And Stroke
Loyd James Fox III 33:49
So he had the stroke, and then all hell broke loose. My dad was an alcoholic. And he passed that gene on to me. But I take things just a little bit beyond that. So at that point in 2010, I was taking opiates for shoulder injury that I got working in the ER and got hooked on him.
Loyd James Fox III 34:26
A doctor in 2014 decided that he was going to stop prescribing them. What does one do when he’s got a candy machine at work that gives you whatever you want?
Loyd James Fox III 34:47
I’m not saying it’s the right thing to do, but I ended up as a full-fledged addict and suffering miserably, because I didn’t have what I needed. It was awful. It was God awful.
Bill Gasiamis 35:09
You were in withdrawal or not able to access?
Loyd James Fox III 35:13
Drugs during the beginning of the week of my work week. And then by the end of my weekend, I would be in withdrawals. So I got caught. I entered a program for nurses in California here that allows you to hold your license, so you can’t work, really work on yourself, weekly counseling, weekly nurse support meetings. Weekly, or daily, for a year narcotics anonymous needs.
Bill Gasiamis 36:07
Okay, hang on a second, hang on a second. What you’re telling me there is a need for a specific program for addicted nurses to be able to attend rehabilitation, while maintaining their license, going through this rehabilitation process to get to the other side. And then hopefully, be well enough to go back to work?
Loyd James Fox III 36:35
Yeah, doctors, nurses, dentists, pharmacists, lawyers.
Bill Gasiamis 36:42
That is fucking amazing. So instead of treating people who get addicted like criminals, and taking their license, their ability to practice away and the rest of it is supporting those people to get rehabilitated.
Bill Gasiamis 37:05
And get off the addictive substances and get back to work. Man, that is amazing. I absolutely love the sound of that. And, but I don’t like the fact that you ended up there, or that there’s a need for it. But what an amazing program.
Loyd James Fox III 37:27
Amazing, so much that when I got out of the program in 2018, I ended up with pneumonia. They gave me morphine, for air hunger. And it started all over again.
Bill Gasiamis 37:45
Hang on a sec, what’s air hunger?
Loyd James Fox III 37:48
Air hunger is what you can get when you can’t breathe. Morphine relaxes you enough to where you can breathe.
Bill Gasiamis 37:59
Okay. And morphine is it a long term solution to a long term problem? Or is it a short term solution to a short term problem?
Loyd James Fox III 38:12
Short term problem.
Bill Gasiamis 38:13
It’s just a short term thing and then they just, it’s something to help get you over the line. But do they know your addictive personality? And did you go there willingly? Or do you get concerned? I gosh, I’m going to be prescribed morphine. Is that going to continue?
Loyd James Fox III 38:40
I thought I could handle it. I thought I had this and I could get through it. And I was wrong. I did the program twice, eight years. So get through the program. I’ve got enough gratitude that when I go to bed every night, I make list of what I’m grateful for.
Loyd James Fox III 39:17
From the smallest things of that I got kindling in my bucket because my son made it for me to the fact that I was able to get through the day without hurting anybody’s feelings or break anybody’s heart.
Loyd James Fox III 39:39
So back to the question of where I was sitting in that bed. I was grateful for the fact that I was sitting there alive I know I’m gonna go. I know that my life is shortened with my diabetes.
Loyd James Fox III 40:12
I’m not ready to go. But I’ve heard you say, God, higher power, the universe, whatever might be out there. I’m ready to go see if they want to take me. But if it’s not my time today, let’s get on with this.
Bill Gasiamis 40:43
Yeah, let’s make the most of it. So it’s quite the journey, diabetes at nine and then the challenges that you have to face with addiction and then the relapse and all that you’re 54 now does it get easier? As you get older? Do you grow the resilience that you need to make the bouts of the things that you do that impact your life negatively?
Bill Gasiamis 41:40
Have you got to the point where you’re decreasing the extent of the damage of the words damage, but the extent of the I’m going to use it anyway because I didn’t have another word, the extent of the damage that you caused in that time when you’re A addicted or etc. Do you know have you kind of become more skillful at moving beyond it and letting it go and dropping that behavior that causes the addictions and so on?
Loyd James Fox III 42:13
So this is the gist of it is that I used to think my dad was lying, that when he talked about his 12-STEP program, I thought it was a place that he just went to to drink coffee.
Loyd James Fox III 42:18
Right? If he had lived long enough, I would have to give him an amends for that. So about that feeling I had, but those were my feelings and you can’t take it away until you walk a mile in someone else’s shoes. You don’t know.
Bill Gasiamis 42:49
They’re legitimate. And they come from ignorance, because you don’t know any better. And you make assumptions. And that’s what happens. And I’ve learned that lesson as a stroke survivor.
Bill Gasiamis 43:21
There’s no doubt that I judged people who spoke differently, walked differently. Then, quote unquote, somebody who was normal or physically normal. And then I had a stroke. And then it’s like, oh, okay, what an idiot you were.
Bill Gasiamis 43:41
And it was a genuine, idiotic way to be because I was so ignorant. I had no life experience, I had never been through something that that impacted my ability to be myself.
Bill Gasiamis 43:56
And it was the most information that I had. So I did the best with it as I could. And I didn’t seek out enough information to make a to make the correct decision about how I’m going to approach somebody or speak to somebody.
Bill Gasiamis 44:12
But that’s one of the wisdom. wisdoms that come that came with having this episode. You know, 11 years ago, that’s, that’s one of the things that I gained from it, I gained the wisdom to not judge people and to and to give them the benefit of the doubt, and not to take not to take their behavior to heart and be personally wounded and offended by it.
Bill Gasiamis 44:41
Now, I can say that to you as a 48 year old, but there’s no way I could put that sentence together as a 23 year old, of course. You know, I’m going to take that to heart. Of course, I’m going to be wounded by their comments.
Bill Gasiamis 44:54
Of course, I’m going to think it’s personal. I don’t know but and you would have been similar you would have been in a similar situation. That’s what your addiction taught you. Amongst other things. It taught you to have compassion by the sound of things towards your father.
Gratitude And Forgiveness
Loyd James Fox III 45:12
Yeah, so as for the, the wreckage of my behaviors, you walk through those, 12 steps, and they’re my steps, if you want to go to a meeting, there’s a meeting everywhere. So I recommend if you feel the need to go, go, but that’s not the message I’m sending here today.
Loyd James Fox III 45:42
The message I’m sending here today is that I’ve got gratitude in, in everything I do. So my wife this is this is how well it’s gone, is that my wife took off three months to walk me through and helped me with my recovery.
Loyd James Fox III 46:13
You know, you don’t get that unless they really care. And I had always wondered about my, the amends I gave to her and asking her for her forgiveness.
Bill Gasiamis 46:29
Let’s do the conversation that I really don’t know how to do well, anyway, let’s talk about karma. In a past life, you must have done some amazing things to get so lucky to get a wife like that, who has the background that she has, has that understanding that she has, who can support you and guide you through a situation like that.
Bill Gasiamis 46:53
I mean, that is such an amazing thing for somebody in your situation to have as a support mechanism, because many people who are addicts don’t have that kind of support mechanism at home, they can seek out the best type of support they can out of the home, but then they may not have that additional layer of support.
Loyd James Fox III 47:23
Yep. So she’s so supportive that she agreed to some pretty expensive treatments, you can’t call them treatments, some steps I’ve taken to help heal my stroke. Over here to my right, I showed you earlier the hyperbaric chamber
Loyd James Fox III 48:02
$14,000. I have a really, really good friend who used to be an ER doctor who now does rejuvenative medicine. And he gave me a list of things that you that you should do that I should do that he was doing.
Loyd James Fox III 48:33
Because he has a coronary artery disease, and he’s trying to fix it. This was one of the things that he mentioned to me. But I kind of call them this is gonna sound funny, the Voodoo medicine because nothing’s been proven that this works. I’m willing to take that chance.
Bill Gasiamis 49:07
Hyperbaric therapy is being used effectively for knee injuries and for other ailments, I know for sure there’s even probably good research about it. And as a nurse, I know that you want to make sure most of the time that what you’re doing and treat and how you’re treating people and what you’re prescribing.
Bill Gasiamis 49:28
There’s scientific evidence and real good proof that it works and that it’s not harmful and it’s more helpful than harmful right. And now you’re going into this space of out of the medical field, so to speak. Out of what you’re used to.
Loyd James Fox III 49:47
I’m going right to that line.
Bill Gasiamis 49:51
I was gonna say and I see that in so many stroke survivors who will tell you that Reiki is rubbish until they have a stroke and then they straight up the Reiki practitioner, or they’ll tell you that meditation is rubbish, and then they’re meditating.
Bill Gasiamis 50:08
For me, I went down that path and I would have tried anything, I would have tried slapping two fish together, if I thought that there was a possibility that that might make my recovery continue and be better.
Bill Gasiamis 50:23
So, I get it, like, I know that there’s that desire to solve problems, and at least, you’re going about it in a way that I think is quite reasonable. It’s a recommendation from a doctor, the therapy is proven for other for other challenges.
Bill Gasiamis 50:46
And it’s most likely not going to cause harm, it is going to cause some positive outcomes. And, if it doesn’t necessarily heal your brain, in that specific spot is probably doing good to the rest of your body.
Loyd James Fox III 51:05
So this is kind of weird. Over the last two-three years, when I get little cuts on my hands or stuff, it takes a while for those wounds to heal. I have a blacksmith shop in my backyard basically.
Loyd James Fox III 51:37
And when I’m out there, hitting hot steel and stuff, I can get injuries. Well, my wounds on my hands are healing, like 10 times better than before I got this thing. So it’s helping the wounds on my hand, or the scrapes on my legs to heal.
Loyd James Fox III 52:06
So I’m hoping that it helps in my brain. That we that being said, is that in China, Russia, Britain, I’m not sure about Australia. They pay for all kinds of different things.
Loyd James Fox III 52:34
In the United States they pay for the hyperbaric treatments, they only pay for hyperbaric treatments for certain things. Sudden stroke of the eye, gangrene, diabetic foot wounds, burn wounds that aren’t healing.
Loyd James Fox III 52:59
So they’ve got like nine things that the United States only pays for. So this is out of my pocket. But if I were in Britain, or if I were in Russia, for I was in China, I would be in one of these things. And it wouldn’t cost me anything.
The Hyperbaric Chamber And How It Works
Bill Gasiamis 53:19
Yes. So out of curiosity, how long do you spend in the chamber? How does the therapy session go?
Loyd James Fox III 53:30
So what I do is, that I wear an insulin pump. So it gives me insulin throughout the day, I’ll give three units of insulin, get in the chamber. I have to take the pump off because it doesn’t, it doesn’t handle the pressure. Get in the chamber. Turn it on. And then I’ll sit in the chamber from anywhere from an hour to three hours. So I’ve spent a lot of time in there since I had the stroke in November.
Bill Gasiamis 54:10
Okay. Did you notice any changes? Is this something that you can hang your hat on? Can you say this is what other than the scars on my hand and all that stuff? Did you notice anything different now?
Bill Gasiamis 54:32
I am in fact very impressed that three months after your stroke, you’re on my podcast. That’s amazing. That’s just fabulous that somebody is capable of doing that after a stroke. And I’m grateful for that.
Bill Gasiamis 54:48
But then I do notice that you have some fragmentation in your thinking and in your speech and in your ability to begin and finish sentences, which I don’t know if it’s your normal way of speaking, or it’s as a result of the stroke.
Bill Gasiamis 55:07
But that’s how I was I’m very familiar with the feedback I was getting from my wife and other people about how I was communicating after the second bleed that I had.
Bill Gasiamis 55:23
So am I seeing you the way you were before stroke? Or am I seeing a slightly different way of communicating and to make the question a bit shorter than it has been. And what have you noticed about the hyperbaric chamber with regards to your stroke recovery?
Loyd James Fox III 55:45
So I feel that my speaking is better. When I first had the stroke, I had to stop. My brain has always been bing, bing, bing, bing, bing, bing, bing, bing bing bounce around this subject to that subject. That’s not new. Me going from one subject to another. Sometimes I have to be straightened out. Or, well, what about this? What about that? Or I’ll just keep rambling.
Loyd James Fox III 56:24
When I had the stroke when I started to talk like I did, when I normally did, I would slur all my words, all of my words sounded like I was drunk. So I had to slow my my thinking down and my speech down.
Loyd James Fox III 56:48
I’m doing that just because this is what the way it had to be after the stroke, right after the stroke, I had to slow it down. So the hyperbaric chamber was not my idea. It was my friend, Mike’s Idea. Mike Anderson, one of the best men I’ve ever met in my life.
Loyd James Fox III 57:16
His son ended up with a C7 fracture. We had some big fires in 2019, I think, big fires, burned his house down, left his garage, his son ended up with a C7 fracture. Ended up with a wound driving from San Diego to Redding. Because of a heater in the seat that got bumped. So they treated him for that wound in a hyperbaric chamber heart chamber.
Loyd James Fox III 57:55
And then after the 40 treatments, 40 treatments is the normal prescription for hyperbarics. And after the treatment, they bought a system and was using it while they healed and it was just sitting in his house. He invited me over and say hey, why don’t you get in this after he found out that I had a stroke.
Bill Gasiamis 58:30
So that’s how you got to it. So okay, that’s great. Now, I’ve done a bit of a online search about the benefits of hyperbaric therapy right. And it says it supports wounds to heal. It supports people who have had carbon monoxide poisoning, it can help reduce the harmful effects of that. It helps people reduce swelling and promote healing when they’ve had severe crush injuries.
Bill Gasiamis 58:57
It can help prevent the spread of gas gangrene, a serious bacterial infection by increasing the delivery of oxygen to the affected areas. Okay, it all sounds legit. You know, increasing oxygen to the brain is really good for the brain to heal and to operate better.
Bill Gasiamis 59:19
It can help reduce the symptoms of decompression sickness, which is what we know hyperbaric therapy for more than anything, diving and having the bins and getting the bins you can help reduce the effects of radiation injury by increasing the amount of oxygen in the bloodstream.
Bill Gasiamis 59:41
So for cancer patients, I imagine that is a useful tool and definitely mentions burns. It can help reduce pain, promote healing, and reduce scarring and people with burns.
Bill Gasiamis 59:56
And is used by Athletes, it supports improving apparently athletic performance by increasing the delivery of oxygen to the muscles. Okay there is no doubt that it has a medical benefit, because it’s been used to bring people back from the bends for many, many, many years before it was applied to other areas of medicine and before other people started to use it, for example, for burns and the reasons that you’re using it.
Bill Gasiamis 1:00:36
So I think this is going to make people curious, I did not know that you can buy one for $14,000. I mean, it’s not cheap. But the fact that you can buy one and have it in your home and access it.
Bill Gasiamis 1:00:51
And even then I imagine, once you’re done with it, there’d be a secondhand market for a good condition, hyperbaric chamber, and it may not end up costing you the full 14 grand, you might have to just cough out and pay for the amount that you lost in the buying and then selling of the product. And then I did a search just while we were talking about hyperbaric therapy in Australia.
Bill Gasiamis 1:01:20
Again, I didn’t know that it existed. There’s an organization here that sells tanks, and they have different versions of them. And they start at about 20,000 Australian dollars, which is roughly the equivalent in about time you do the conversion, all that kind of stuff.
Bill Gasiamis 1:01:41
It’s a similar amount to what you paid. And then they have a more expensive version, which is about $23,000. But I am just stunned that that is so accessible these days. I know $20,000 is not accessible for everybody, but it’s more accessible than it’s ever been. And I think you can rent them as well.
Loyd James Fox III 1:02:02
That’s what I’m doing with this one. I’m renting it. So it was a big cost to rent it. But I’ve decided I could rent this one and own it at the end of the three months. But I’ve decided that I want something that has an air conditioner involved.
Bill Gasiamis 1:02:27
Inside of it. Okay.
Loyd James Fox III 1:02:29
Because you start taking science into stuff, Boyle’s law, you increase pressure, you increase the temperature. This unit doesn’t have a dehumidifier on it. So when you compress air, you humidify you’re pushing the air in there and you’re humidifying it, or concentrating the air that’s in there.
Loyd James Fox III 1:02:59
So you get the humidity increased. So increased temperature increase humidity. You put a dehumidifier on it. It feels better. I’ve been in multiple chamber chambers now. So I know what I want. So and that’s why I did what I did. This is going to help me for the rest of my life.
Bill Gasiamis 1:03:25
Yeah. Well, fantastic. This has been a fascinating conversation. It has had so many layers and different things that we’ve discussed. I’m really buoyed by the fact that at 54, you’ve been through so much, and you’re still working towards making improvements and making changes that are going to benefit your life.
Finding New Perspective: Life After a Stroke
Bill Gasiamis 1:04:04
Often I asked stroke survivors, how has your life changed since the stroke and they’re not normally three months into their stroke journey, but I’m going to ask you that anyway. Because I feel like you’ve had another turn for wisdom or you’ve had another turn for thinking about life differently again. So how has your life changed since you experienced the stroke?
Loyd James Fox III 1:04:34
Everyday life I need to go back to work. But I have that problem that that you’ve talked about on many of your things about fatigue. I get tired, so fast. And I would really I would really like to know the only reason I know about it that It’s a stroke thing is because you’ve mentioned it all the training I’ve been through everything I’ve done. You’re the only one that has brought this up. Your, guest have brought it up.
Bill Gasiamis 1:05:16
Yeah. So strange. I can’t understand that. But that’s okay. Yeah, fatigue, quite normal, not not fun, and can be made worse by the food that you eat. So I know that as soon as I foods that are high in processed carbohydrates, like bread, like sugar, like pasta.
Bill Gasiamis 1:05:45
You know that food coma that we talk about after a Thanksgiving meal, or a big Christmas meal, or a big Easter meal, that can happen to me immediately after just a small amount of food.
Bill Gasiamis 1:05:59
That’s just a normal regular meal if I ate those types of foods, and especially after alcohol, so I still experience fatigue, as a result of my, my strokes, and my brain surgery and all the stuff that I’ve been through.
Bill Gasiamis 1:06:18
But I’ve been able to really minimize its impact and decrease the the severity of it by stopping the consumption, in my case of breads, pastas, and sweets, and sugary drinks.
Bill Gasiamis 1:06:42
So I might be kind of boring to hang out with at lunch, or a dinner. But at least I’m going to be awake, and productive, and I won’t have to separate myself from an event and go and rest and, you know, try and recuperate.
Bill Gasiamis 1:07:06
And it has worked for me, I know it works for other people, as well. But I’m not a nutritionist, I’m not trained or qualified. Anyway, I’m just talking about my experience.
Bill Gasiamis 1:07:18
And I don’t know what stroke and diabetes combined. I don’t know how that except, you know, interferes with fatigue and causes more fatigue. I don’t know about that.
Bill Gasiamis 1:07:34
But I do know that after my brain injury, I also had a thyroid condition. And the thyroid condition was causing the same neurological fatigue that I was experiencing after the brain injury. And at the beginning, it’s very difficult to understand what was happening to me.
Bill Gasiamis 1:08:02
And I was trying to get feedback and information from my doctors about why the fatigue is so debilitating. And I had kind of a double fatigue if you like because the thyroid wasn’t functioning properly, and the brain wasn’t functioning properly. And I was eating the wrong foods. It was just really terrible. I couldn’t walk from the couch to the toilet and back.
Bill Gasiamis 1:08:27
So after many doctor’s appointments and visits and many attempts to get to the bottom of the fatigue and to try and understand Google searches, you know what causes fatigue of the brain and all that kind of stuff.
Bill Gasiamis 1:08:43
And you get a number of different hits. I had these tests and they accidentally one of the tests that happened when I was in hospital because I was so lethargic, was they did a chest X ray that accidentally discovered that I had a nodule on my thyroid gland that was so large, it was the size of a baseball.
Bill Gasiamis 1:09:03
And it was and it had moved and deviated my windpipe and my esophagus by six centimeters, which is about two inches or three inches or something like that two inches, I think, to the wrong direction. So that scan was the one that revealed that I have a thyroid condition but I didn’t know the gravity of the situation.
Bill Gasiamis 1:09:26
And what eventually happened is a year after my brain surgery, I had surgery to reveal half of to remove half of my thyroid and, and that’s why I’m even more susceptible to fatigue because I have two predisposing conditions that both cause fatigue. And if I’m not careful, I can be really unproductive, you know, an entire day. And it’s not fun. It’s not fun being productive.
Bill Gasiamis 1:09:54
So if somebody out there is watching and listening, and they do experience fatigue, just consider some Other things that I said, Ask some trained professionals about what I just said, do a little bit of Googling and see if there’s some articles that are verified that are online that you can read about that. And you might make a massive difference to the way you experience fatigue.
Loyd James Fox III 1:10:19
Simple a simple blood test. Thyroid panel.
Bill Gasiamis 1:10:25
Yeah, thyroid panel. Exactly. Yeah, you nailed it. Because a lot of people have undiagnosed thyroid conditions. It’s why some people are overweight, and they can’t explain it.
Bill Gasiamis 1:10:35
And they don’t know how they’ve become overweight or gained weight all of a sudden. So maybe all the stuff we’ve discussed is going to just get people thinking, that’s really what we want to achieve here.
Bill Gasiamis 1:10:49
And, and share stories. I really appreciate you coming on the show and reaching out. Thank you so much for doing that. I wish you well on the rest of your recovery. And all the best in overcoming all the obstacles that that you need to overcome. And congratulations on how far you’ve come so far.
Finding Your Tribe
Loyd James Fox III 1:11:09
Thanks Bill. Fantastic. I searched you out. Once I got in the chamber, I searched you out. Maybe not you exactly. But looked for some of my people. You know, because there had to be an answer.
Bill Gasiamis 1:11:35
Thank you for saying that. Because you and the people that have already been on my podcast are my people. That’s exactly how I feel like they’re my people.
Bill Gasiamis 1:11:42
Because we get each other we understand. Without needing to really even talk really, we could have just done this in five minutes. We completely understand. But, you know, I get it. You’re my people. So thanks for being on the podcast.
Loyd James Fox III 1:11:55
You’re very welcome. It’s my pleasure.
Bill Gasiamis 1:12:00
Well, thanks again for joining us on today’s episode to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview.
Bill Gasiamis 1:12:11
Please go to recovery after stroke.com/episodes. If you’d like to purchase the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses and get on board now.
Bill Gasiamis 1:12:25
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Bill Gasiamis 1:12:34
And if you’re watching on YouTube, comment below the video like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:12:50
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor, or care for someone who is a stroke survivor. Or you are one of the fabulous people that help stroke survivors go to recoveryafterstroke.com/contact fill out the form.
Bill Gasiamis 1:13:09
And as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you so you on the next episode.
Intro 1:13:23
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 or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:13:40
All content on this website at 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 1:13:53
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.
Intro 1:14:09
Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.
Intro 1:14:25
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 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:14:42
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Intro 1:14:55
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1 hr 16 min
February 23, 2023 Jenny Clarke’s Vision for a Brighter Future for Brain Injury Recovery – SameYou.org
Jenny Clarke together with her daughter Emilia Clarke are the founders of the charitable organization SameYou.org, a non-profit that supports young adults who have suffered from brain injuries, including stroke.
Website
Youtube Channel
The Untold Story
Highlights:
00:45 Introduction
03:00 How Emilia Clarke’s Stroke Journey Began
10:34 The Five Foods To Avoid After A Stroke
17:29 Discovering The Stroke Community
28:04 The Importance of Getting Access To Brain Scans
35:34 There Is Prevention In Recovery
45:13 Regaining Control In Your Recovery
55:16 The Importance of Mental And Emotional Support
1:10:06 Telling Your Recovery Story
1:17:20 The Biggest Project by Same You
Transcription:
Jenny Clarke 00:00
What you said is you wanted to take back control. And I think that is such a fascinating topic in itself. Because what you highlighted was that you felt that you weren’t in control the others were in control of your recovery. And I think that so many people say that to us, but it’s sort of infantizing people. So it’s taking away your adulthood, your urgency about yourself.
Intro 00:32
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction

Bill Gasiamis 00:45
Hello, and welcome once again to the Recovery after Stroke podcast. This is episode 238. My guest today is Jenny Clark, who together with her daughter Emilia Clarke co-founded the charitable organization, Same You.
Bill Gasiamis 00:59
Same You is a nonprofit organization dedicated to improving access to neurological rehabilitation for adults, particularly those recovering from brain injuries and strokes. Emilia Clarke is an actress best known for her role as Daenerys Targaryen on the television series, Game of Thrones.
Bill Gasiamis 01:18
Through Same You, Jenny and Emilia aim to raise awareness of the challenges faced by young adults in accessing neurological rehabilitation and to provide support and resources to those in need. Jenny Clark, welcome to the podcast.
Jenny Clarke 01:34
Thank you so much, Bill. It’s a privilege and honor and I’m excited to find out what it’s going to be like,
Bill Gasiamis 01:40
it’s gonna be fun. We’re going to have a good time. I reached out to Same You via the Instagram page. Because sometimes when you don’t know how else to connect with somebody in an organization like Same You, and you love the work they do.
Bill Gasiamis 01:58
You just go the quickest route. So I did that. And I said, Hey, is it possible for me to interview with Emilia Clarke? And of course, they said, look, Emelia is busy. It’s not possible. And then I didn’t think to say A. What about somebody else from Same You?
Bill Gasiamis 02:17
And a little while later, literally a few months later, I received an email from the amazing Veronique, and Veronique said, Hey, would you love to have Jenny Clarke on the podcast, the founder of Same You? And I said, of course, I would. Therefore, I fulfilled my goal of connecting with you guys and getting you on my podcasts, so I can share the work that you do because I love the work you do. I don’t like the way you got to doing the work that you do. So I’m wondering, though, if you could share a little bit about the journey that got you guys to be in this space right now?
How Emilia Clarke’s Stroke Journey Began

Jenny Clarke 03:00
No, thank you for that. So we were just completely unaware oblivious, of any issues that you might have with your brain until Emelia had her first brain hemorrhage. And that was just after she finished filming the first season of Game of Thrones, which was pretty traumatic for somebody just out of drama school.
Jenny Clarke 03:00
And we don’t know why it happened. She was actually at the gym, doing the plank when the brain hemorrhage happened. So she was super fit, super young, early 20s, which is what saved her life. So the issue that we first found, which I can go into later, was it interestingly, it’s very difficult to have general doctors diagnose brain hemorrhages.
Jenny Clarke 03:59
But when she was diagnosed and was treated, and we realized everything was fine, took a long time to realize that. We knew that she had a second mirror aneurysm. So two years later, she was on Broadway, and she went to have preventative surgery. And the US system is very different from the UK system. And we believed that we really could trust them to coil a very small aneurysm.
Jenny Clarke 04:30
And it didn’t work. It went very badly wrong, no fault on anybody because these things happen because it’s so sensitive and friable. So she had a very, very serious couple of strokes open-head surgery fighting for her life.
Jenny Clarke 04:46
And then, despite everybody saying, Oh, she’s gonna lose this, he’s gonna lose that she’s gonna be whatever she isn’t and wasn’t. And so the result is that she has clinical fatigue, which she has to manage, that doesn’t go away.
Jenny Clarke 05:04
But that’s about it. And you know, twice, and these near-death experiences, we just thought, Well, my goodness, we, you know, she has a platform, maybe if she did start to tell people about what happened to her, she could help normalize it in some way.
Jenny Clarke 05:22
Because we saw straight away that there was such little provision for helping people get their lives back after a brain injury or stroke. And because she was in her 20s, both times it is obviously, clear that when you’re young, and maybe haven’t quite got your identity together yet, whatever that might be.
Jenny Clarke 05:47
And then something catastrophic happens. And it’s your brain, which is, you know, arguably, you. And you haven’t got help, whether it’s physical, psychological, cognitive, speech, or language, whatever the things are, that you need, you need mental health support. Just really, in most countries, it’s patchy, or it doesn’t exist. So we just thought, let’s try and do something. So that’s how we started.
Bill Gasiamis 06:25
Was Emilia in the UK, or the US, for the majority of her, we’ll call it treatment or recovery?
Jenny Clarke 06:37
The first time she was completely in the UK. And so the wonderful NHS gave us. Intravenous paracetamol, we like that. In the US, she was given a cocktail medley of terrible drugs, we don’t like that. And so that was all obviously about pain management at the beginning. But in terms of recovery, there was none offered in either country.
Bill Gasiamis 07:05
So you’re not saying anything that’s not familiar to me, this is the weird part, you’re talking about the American system and the British system. In Australia, it’s not that different. So my journey was in 2012. So around the same kind of base in time when nothing existed online to get support when I went home after the first bleed in my head, and it was just sick, go home, sit and wait it out for six weeks.
Bill Gasiamis 07:33
And then what we’ll do is we’ll reassess in six weeks when things have settled down, hopefully. And then it’s like, okay, so six weeks, almost to the day that I was supposed to be back in hospital for my follow-up, I had another bleed. And then it was pretty catastrophic in that the size of the clot that was in my head started as what I would call the size of your large fingernail.
Bill Gasiamis 08:00
And then it became about the size of a golf ball. And which meant that it was impacting way more of the brain. And I went home with cognitive deficits, that were so dramatic that I didn’t know how to start a sentence sometimes finish a sentence, I would forget about who came to visit me. I was aggressive and angry.
Bill Gasiamis 08:23
I had a whole bunch of issues relating to trying to make my brain calculate things and work out things. And my working memory was terrible. There’s a whole bunch of issues, right? And just by habit, I had been seeing a counselor for many, many years before my first bleed. So, I think by then I would have been on that counseling journey for about 12 years.
Bill Gasiamis 08:52
It’s just something that I’ve always done. And when I got to my first appointment, after the second brain injury, and I had a conversation with my counselor, my psychologist about what had happened to me, she must have noticed a massive difference. And she’s the one who said, have you ever had anyone booking a neuro-psych assessment so that they can determine what your deficits are so that they can provide you with some support to help you navigate those deficits and do some work to potentially improve those deficits?
Bill Gasiamis 09:31
I said no, no one’s ever told me that I didn’t even know what a neuropsychologist is. So on that information, we went through the public system here in Australia, and I made a booking for an appointment with a neuropsychologist, but the earliest booking that I could have was nine months later.
Bill Gasiamis 09:55
And I didn’t realize that because my brain wasn’t working properly and my wife was in all sorts, I didn’t realize that nine months was nine months away and that it was such a long time away. And by the time I eventually got to nine months, a lot of the deficits had decreased on their own and gone away. But we hadn’t done anything to do that. It was just a natural progression of the brain kind of dealing with or getting used to the blood clot. And as it decreased in size because it was being absorbed by the body or being broken down.
The Five Foods To Avoid After A Stroke
Bill Gasiamis 10:35
A lot of my deficits just came back online. Hi, everyone, just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. So I developed a course on the five foods to avoid after a stroke.
Bill Gasiamis 10:52
Most people are talking about what to eat after a stroke to support brain health and recovery. Very few are talking about what you should avoid eating after a stroke. If you want to support your brain to heal, and you are curious about the five foods that may make matters worse, when you consume them, then this course may be for you.
Bill Gasiamis 11:12
In the Fun Five Series of interviews, you’ll hear about what foods not to eat after a stroke. But most importantly, why the interviews are done with a qualified nutritionist Stacy Turner, and performance coach Matthias Turner? In the more than five hours of interviews, we discussed the five common foods that cause inflammation in the body and brain how they could interfere with healing, and how they could make fatigue worse.
Bill Gasiamis 11:41
For just $49 this five-part series of more than eight hours of interviews with full PDF transcripts mp3 and videos will give you everything you need to know about the foods to avoid and why, the modules include Eight reasons to quit sugar after stroke, Seven reasons to quit caffeine after stroke, Eight reasons to quit gluten after stroke, Six reasons to quit dairy after stroke, and Six reasons to quit alcohol after stroke.
Bill Gasiamis 12:11
So visit recoveryafterstroke.com/courses. For this and other specifically designed courses that are made by a stroke survivor for stroke survivors. Once again, you will get more than eight hours of content. All audio is downloadable in mp3 format, so you can listen on the go. full transcripts of all the content to take notes on are available for download so that you can read instead of listen.
Bill Gasiamis 12:41
Presented by a stroke survivor for stroke survivors. also presented by a trained nutritionist and performance coach, you’ll get 24-hour access, lifetime access to the courses purchased and you’ll be able to interact with me in the comment section. Go to recoveryafterstroke.com and check them out now.
Bill Gasiamis 13:00
Of course, it wasn’t dealing with just that. Like you guys, we were dealing with all the unknowns, all the uncertainties, all the emotional trauma, trauma. Well, the psychological trauma.
Bill Gasiamis 13:12
And then the lack of guidance at home meant that every time something weird happened to me or I felt strange or I wasn’t feeling well, we were always wondering, oh my gosh, is this another one? What do we do? Always second-guessing ourselves, never feeling comfortable with any decision that we made about how we should proceed going forward.
Bill Gasiamis 13:43
And it meant the endless amount of unnecessary in hindsight visits to the hospital, to wait again in waiting rooms to get assessed and reassessed to have more MRIs, more CT scans, and so on to see what was happening. So that we share in common.
Jenny Clarke 14:07
Yeah, and I think we share that in common with millions. And what we think, you know, after this journey of actually launching the charity, four years ago, in March next month, what we’ve learned is astounding, that this is such a prevalent problem. And it’s an emergency problem it’s always catastrophic and traumatic.
Jenny Clarke 14:31
Whether you have a stroke or anything else that happens organically in your brain, or you have some sort of an accident, sports or road traffic, whatever, it makes it a brain trauma. It is just so catastrophic for people and their families and their friends and their workplaces and the health service because everything you’ve just described so eloquently has such a major economic impact and knock-on with readmissions.
Jenny Clarke 15:05
Preventing people from getting back to work getting back to school and getting on with their lives. So it just still is extraordinary that this is not a topic that everybody is hotly debating, and trying to fix. I mean, I know the world is burning, and we have so many problems. But this is a severe problem that isn’t hitting the radar.
Bill Gasiamis 15:29
Yeah, the world’s always been burning, and not only has always been burning, but I’m somehow in that state in that situation. There’s been amazing progress forward to raise awareness about prostate cancer for men, breast cancer for women, among the many other amazing things that we have awareness about now, ALS, or Lou Gehrig’s disease, or Alzheimer’s or all those things, whatever they are, and when the stats are now I think they’ve been revised that one in four people will experience a stroke in their lifetime.
Bill Gasiamis 16:07
We in Australia still struggle to have people be aware of what a stroke is, what it looks like when somebody is having a stroke, and what to do. If you are with somebody that’s having a stroke. And still, stroke survivors often tell me they went to hospital.
Bill Gasiamis 16:26
And if they went on a wrong day, Friday evening, or Saturday evening, they were often told to take a seat because they were probably drunk or probably taken some drugs or did something like that. And then they did what they were told, and that made the situation and matters worse.
Jenny Clarke 16:47
Indeed, exactly. And in fact, we say put if we call it acquired brain injury, which is the clinical term for a stroke, or traumatic brain injury, so anything that isn’t generative, and anything that hasn’t happened at birth to you, any other brain injury is called an ABI acquired brain injury. And that we reckon with UCLH. In London, that’s one in three people. So it’s astounding. So yeah, I think there is so much to be done. And I think one of the hard things when you’ve got such a large problem is knowing where to start.
Discovering The Stroke Community
Bill Gasiamis 17:29
Yeah. And it sounds like that’s what motivated you. But that’s what motivated me to do what I’m doing. So in 2017, I thought well, it was actually in 2015, I thought, well, I’ve got to somehow find a community for myself. So it was kind of like a selfish thing. At the beginning. It was like finding a community for myself, to feel better about everything that I was going through and still had to come.
Bill Gasiamis 18:01
And I thought, Well, I’ll start interviewing people that I think are inspiring, who have overcome really serious health issues. So that I can, you know, have some role models and feel good about the possibility of my recovery and moving on from this situation. And that led to a podcast that wasn’t called the Recovery after Stroke podcast that was called.
Bill Gasiamis 18:29
Well, such a while ago, I forgot what it was called. And, as a result, I got so overwhelmed by the responses from people and the fact that I was being contacted every so often being told that that episode was necessary for that episode I relate to and thank you for this episode. And the rest of it, I realized I was onto something.
Bill Gasiamis 18:58
And I realized that what I was onto was the thing that I was missing when I was going through this because we had nothing we had just me and my wife and frequent communication with our doctors who spoke in medical speak anyway. And the only thing that I could speak to was the part of your journey that started in the hospital, and then that ended in the hospital, and then they weren’t able to speak to anything that came after that.
Bill Gasiamis 19:28
So I felt like I needed to do this for me, but then I realized that it’s doing a massive thing for other people. And that was unexpected. I didn’t realize in my state that that would be the case. Before we get to speaking about Same You and how you guys got to come up with the idea develop it and create the charity I want to get a bit of a sense of what it was like for you to go through the diagnosis and the hospitalization of your daughter.
Jenny Clarke 20:13
So I think parents everywhere understand that when you have a child in their early 20s, they’re still a child to you. They might believe that they are, you know, world-beating professionals, but there is still such a strong bond. But you’ve gone through the whole process of leaving home university, drama school, whatever living away all of that stuff. And then you something you know, you always, again, a parent dreads getting a phone call, my phone is on 24/7 because I’ve got two kids.
Jenny Clarke 20:55
No other reason. Because you always think what if something happens, and so with my son, something happened earlier, which was, again, not good. But that’s all been managed. And then when we got the call for Emilia so I think that my reaction was one of complete terror. And it was, in fact, a New Zealand neuroradiographer who saved her the first time when I say saved her, effectively put a coil into her bleeding aneurysm that blocked it, and prevented a further stroke.
Jenny Clarke 21:37
And he did it very well. And it’s a great art. And so we were so lucky that we weren’t we managed, I fought to get her into the best place in the UK in London. And that’s called the National Hospital. And colloquially known as Queen’s Square, because that’s a place that it’s in. It’s an old hospital, it’s linked to UCLH. And it’s somehow separate form from it because it focuses on diseases and emergencies of the brain.
Jenny Clarke 22:09
So it was it was horrendous, it was the worst possible, you know, thought that I could have, because we didn’t know if she’d live or die. And going through that. That was pretty terrible. So but you know, it’s all about taking action, doing something not sitting passively. So I was one of those annoying women, really bugging the doctors every step of the way to find out what was happening.
Jenny Clarke 22:36
And to see what else they could do, and to just, you know, use my will to try and make her survive. And then we found out later, two years later, that I’ve got aneurysms, because the first thing they say to you, when did they discover you’ve got an aneurysm, is there anything in the family any familial experiences? And we said, no, no, not at all. And so I’ve now got three aneurysms.
Jenny Clarke 23:05
So the same as Emilia to mirror an aneurysm, one life had coiled as an emergency, which I didn’t know about, just by accident, I had a brain scan. And then I’ve got two other smaller ones. So that relates not just to Same You, but it relates to, you know, really quite a broad understanding of the issue of actually living with something like a time bomb ticking in your head. And how do you deal with that?
Intro 23:37
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 24:01
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 24:20
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Jenny Clarke 24:40
And what that can mean and the impact it has on everyone’s mental health. But yeah, to answer your question, it was the worst possible experience I could ever have. Apart from losing her course.
Bill Gasiamis 24:53
Yeah, yeah. Thank God, that it didn’t end that way. Now, I so often wonder what my parents thought, and I haven’t been able to have that conversation with them. It’s been this February will be 11 years, since the first instance. Now I know that they fell apart.
Bill Gasiamis 25:17
Personally, each of them fell apart differently, because of the way that they responded, I could just tell that they weren’t able to manage the situation and the gravity of the situation. But I’ve never actually sat down to have a chat with them about that. And it’s very interesting for me to hear your response to what it was like for you because I’m a dad, I have a 22-year-old and a 26-year-old, you know, I can only imagine.
Jenny Clarke 25:50
Wow what’s your skincare, tell me.
Bill Gasiamis 25:54
It’s called being young and dumb, and getting married way too early. And started a family before I had planned it, but I wouldn’t change it for the world. And everything I did, has just worked out beautifully. And it’s amazing. And it’s fantastic.
Bill Gasiamis 26:11
And I’m 48 and it’s such a great time to have my kids around me because they are adults now. And we, in my early middle age, we have, you know, have an amazing connection and relationship. So I cannot imagine what it’s like to go through what you went through.
Bill Gasiamis 26:35
And at the same time knowing that material event arteriovenous malformations are sometimes potentially, in families, they run in the family. And discovered that my cousin in Greece, my dad’s niece also has an arteriovenous malformation that is causing her some drama like epilepsy, etc.
Bill Gasiamis 27:02
It puts me in that situation where I don’t know whether what I should tell my kids is to go and get their heads scanned or not. If we find that they get the head scan, and there’s something there, then what do we do with that ticking time bomb, so to speak all that information?
Bill Gasiamis 27:18
And then if we don’t do anything, you know, then do we just sort of bury our head in the sand and pretend that everything’s okay when it could well and truly be okay, but it may not. So this is kind of what’s troubling me about my journey. And then having kids that are, you know, vulnerable to life as well. And then me dealing with my mortality, and then somehow, maybe sometimes even superimposing that potential mortality onto other beings that you love that around you. It’s just, sometimes it’s troubling to think about it and contemplate it.
The Importance of Getting Access To Brain Scans – Jenny Clarke
Jenny Clarke 28:04
No, I understand what you mean completely. Because I talked to many doctors, neurosurgeons, neuro neurointerventionists. And many people, many of them have said to me, because there is the tricky question of do people have brain scans, because the only way you’re going to find out if there’s anything in your brain that has a potential of imploding or exploding or whatever way you want to describe it?
Jenny Clarke 28:37
If you can’t do anything about it, why alert people? So that’s, I think, maybe received wisdom in the UK from the established clinicians. But I think that while applauding them being internally grateful, and understanding what huge a training a neuro anything has to go through, and what would we be without them? The whole point is that medicine today is science-based completely.
Jenny Clarke 29:12
So everything has got to be evidenced. And there is a very gray area in my experience, about what evidence is. And so medical establishments are in charge of our lives. And obviously, they need to be as sure as they possibly can. And I think that there’s got to be a revolution which I see happening all over the world, where there is much more of a balance between the scientific approach and the ancient emotional approach.
Jenny Clarke 29:45
So I’m not being in any way, talking about alternatives. I’m talking about the growth and development of the science of medicine. And I think through broadening it and broadening everybody’s perceptions of how people can be helped. I’m my I would love to say healed, because recovery, which is the focus for our charity is about healing. And on so many levels, people can be healed.
Jenny Clarke 30:19
They may not be healed completely, they might always live a life that they didn’t expect to live. But we call the charity Same You, because we’re all the same, whatever catastrophe happens to us, inside we are the same. And it’s really hard to fight for your identity to be acknowledged by people that you know or people who you just met. And so I think it’s vital for everyone to know who they are.
Jenny Clarke 30:53
But that’s a bit of a digression. But to go back to your question, or maybe it wasn’t a question a rhetorical question, giving me your experience, I think that people should investigate and know because using a very strong cliche, knowledge is power. But if you are of a very anxious disposition, naturally, and people are, it is questionable whether you’re an anxious person with fearfulness about the world and life, that will just make things worse for you.
Jenny Clarke 31:34
On balance, I think people should know, but then you’ve got the question of how expensive it is to be scanned and how it’s not in any health service, which is all a failing around the world. It’s very difficult. So it’s a very deep and complicated question.
Bill Gasiamis 31:50
Yeah, again, I never know how to phrase this, I had the pleasure of interviewing a lady who lost her daughter to an arteriovenous malformation when the child was five years old. And she’s again, also moved to do something about the situation that she found herself in and then doing something to prevent it happening to other people. And one of the things that she’s advocating for in the United States, is free brain scans for people.
Bill Gasiamis 32:34
And they going around, and while I’m talking, I’m just trying to look it up on my website to find the episode. So I can tell people about it in case they want to go back and listen to it. And, they are in the process of raising enough funds to create to set up a clinic where they have their machine that is supported by doctors I imagine, and radiographers who are qualified to evaluate such scans.
Bill Gasiamis 33:08
And then from there, their goal is to basically for people who want to know to give them the information so that they at least have a chance at potentially doing something about it if they choose. And again I found myself conflicted in the interview. Not at all, the work that she’s doing amazing work, there’s tireless work that she’s doing while dealing with the challenges of losing a child.
Bill Gasiamis 33:56
But then, with the idea of what do you do with that information? You know, how do you move forward with that information, especially if your child is young? But she assures me that there would if she had known, they would have done something about it. She says that in hindsight, I know that she says it in hindsight, but they would have done something about it and to be robbed of her child the way that she was robbed of a child at school, in class around her classmates, and then to get the phone call that they got.
Bill Gasiamis 34:40
It’s why wouldn’t that person want to go out of their way to find other ticking time bombs in other people’s heads and tell people about it and say, hey, you’ve got this, maybe you should take some action, or at least you should know about it. And I’m not normally somebody who struggles to talk on my podcast, get words out make sentences, or put sensors together.
Bill Gasiamis 35:06
But this bothers me, this is a real struggle for me to come to terms with because I’m as a father, struggling with that idea. And then I’ve had plenty of interviews with people that have been through it like you and, and other people. And it’s, and it’s just, you’re damned if you do and you’re damned if you don’t it’s a situation of that.
There Is Prevention In Recovery
Jenny Clarke 35:34
No, it is. And then there’s, you got the two critical words, I think prevention and recovery. And we focus on recovery. But in reality, there is prevention within recovery. And what I mean by that is if people have got support and are treated in the best possible way.
Jenny Clarke 36:04
And having access to recovery, and rehabilitation services, whether it’s from clinicians, from therapists, from peers, or self-help, you do prevent people from getting ill again, from having another crisis. And I think that the concept of being armed with information that they you have, potentially life-threatening issue somehow feels that it’s very important for people to have that choice of knowing.
Bill Gasiamis 36:43
Yeah, I feel like I agree with you. And there’s a sense of a little bit of control where otherwise control is taken away from you, it’s put in the hands of other people. And, at least in this way, you’re partly in control of your destiny, and you make it a really good outcome. And if you don’t, at least, it’s a path that you took under your own steam.
Bill Gasiamis 37:08
And therefore, for me, at least, it would give me some feeling of not being out in the wilderness and not waiting for supposedly fate to take its course, it’d be an intervention that I could take and, and, do something about being that my kids are adults. It’s their decision.
Jenny Clarke 37:42
But you’re there to guide them even if they’re adults. So I think that what we see from all the thousands of people who’ve written to us is that you’ve got on the one hand, you know, the group of people who have gone through this problem, and they tell us their needs and wants. And then you’ve got, on the other hand, the amazing clinicians who are not a bad word to say about them.
Jenny Clarke 38:12
But then if you see that they’re not like this, there is a very, very big gap between what people want and need and what clinicians believe that they can offer, or that people should have. So I think that one of the things that has got to change in the next years is this coming together of that dynamic, where you’ve got a much, much more open dialogue, and multitude of services that don’t currently exist in an organized way.
Jenny Clarke 38:50
Many services do exist. And fantastic. And they might be small, they might be unproven. And they’re the first, so in, you know, in universal health care, you always have to have something with a systematic approach. So I think that what we’re trying to do is to see if we can find ways of understanding what these new advances are, and understanding what could be possible with trying to find pilots and funding some ways to test different interventions. So I think that is the future for me. And that also, obviously, has to do with prevention as well as recovery.
Bill Gasiamis 39:37
And we’ll get into talking about the same you in a moment, more deeply, but as part of that thing that you guys do is it also creating an easy path to access those services for people that have had a stroke?
Jenny Clarke 39:54
We would love to be able to I don’t think that it’s in our power to do that but it’s about accessibility. So what we see is that wherever you might be, there are so many levels of severity of brain injury. In the UK, it’s a very complex NHS hierarchy. And if you have got a severe severe brain injury, there are places to go.
Jenny Clarke 40:23
And you get automatic post-discharge, or, inpatient rehab, and then post-discharge help. But it is quite, depending on the severity, it’s finite. And usually, and it’s the same in the States, you know, it’s four weeks, 12 weeks, 16 weeks, and we talk to people in 10 years after they’ve had their stroke or brain injury, and they’re still not in one piece, again, when they could be helped to be putting their pieces together.
Jenny Clarke 40:54
And living fulfilling lives in a much more easy way and a much easier way. And so that is such an issue. And so accessibility is one thing, and innovation is another. So what we still do as a, I call us a startup charity, you know when coming into our fourth year, we still are trying to figure out, what is the best approach for us to take. Because we don’t have ambitions to be you know, anything that’s got a lot of overhead, that is an organization.
Jenny Clarke 41:37
Because I think that is there’s plenty of people doing that. And they’re not moving the needle very much. And again, no criticism, but they do what they do. But they’re just to me has to be a different way of approaching it that maybe could have more impact less conventionally.
Jenny Clarke 41:37
Organizationally, I mean, I don’t mean, again, and don’t mean alternative medicine, I mean, just structurally trying to solve problems in much more of a community a network of collaboration, as opposed to this 20th century in a large organization.
Bill Gasiamis 42:21
Yeah. And it feels to me that, at the moment, things are fragmented. Like you said, there are amazing service providers of those services, but accessing them in a cohesive way that works for particular individuals, is challenging. For me, I had, you know, one appointment on this side of town, the other appointment on that side of town.
Bill Gasiamis 42:42
It was just difficult to navigate, and fit all those appointments in considering the condition I was in, the amount of time it took out of my day the fatigue that I was experiencing, and the resources that I had available to me and all those things, and it was just 1.3 appointments per week was just almost too many to get to.
Bill Gasiamis 43:08
I did get to the stage where I got my rehabilitation to a point where my walking improved enough that I told my therapists You guys are sacked I no longer will be coming to see you, you’ve done a great job, I’m taking the responsibility for the way that I walk myself now to myself, and I’m going to relieve you of that duty.
Bill Gasiamis 43:33
And that was because I couldn’t handle the three-hour round trip that it took one hour to get there, and one hour to be there. And then one hour to get back in the middle of my week. It was just so disruptive to my week that I needed to stop going there.
Bill Gasiamis 43:51
And I didn’t want to stop going there. Specifically, I wanted to put as much energy into my walking again as I could. But I just felt that I was better served doing that at home. Then allocating that much time of well, I’ll call the travel time wasted time to be there for an hour, you had to go two-thirds of my time away. It was not in rehabilitation. It was a way of travel and I just thought it was nuts.
Bill Gasiamis 44:26
It wasn’t an efficient use of my time. So I get it, I get what motivated you to put your heads together and come up with something to make a difference and I love I love that now just before we get onto the same younger, just let people know anyone interested in listening to Paige to Episode 141 it’s about Gina Keeley and the foundation that she set up in the honor of her daughter Paige It’s called the Paige Keeley foundation. So you can just go to recoveryafterstroke.com/episodes, scroll down, and you’ll find episode 141. And you can have a bit of a listen to that story now.
Regaining Control In Your Recovery
Jenny Clarke 45:13
But can I just say that you were just framing something that I think has got to be highlighted, what you said is you wanted to take back control? And I think that is such a fascinating topic in itself. Because what you highlighted was that you felt that you weren’t in control, the others were in control of your recovery.
Jenny Clarke 45:41
And I think that so many people say that to us. Because it takes me, I can’t even pronounce the word, but it’s sort of infantizing people. So it’s taking away your adulthood. And your urgency about yourself. So I just at some stage, can we talk about that a little bit more? I think that’s fascinating.
Bill Gasiamis 46:03
Yeah. Let’s talk about that now. Because I’ve got time. For me so if I shed some more light on that, it’s exactly that. It’s the reason why I sacked my first neurologist, and team of doctors that were helping me after the second bleed. So what happened was, that I went in for the first bleed at the Austin hospital here in Melbourne, it’s very close to home, and it’s extremely convenient.
Bill Gasiamis 46:34
And when I went home and did my six weeks, as I was told, and then ended up back in hospital, I found that they were talking about me, at the end of my bed, but they weren’t including me in the conversation. And as much as I tried to involve myself or get them to respond to my questions, I kind of almost got brushed off.
Bill Gasiamis 47:02
And I’m the kind of guy that I need information good, bad, or indifferent, I need to know everything about what’s happening to me so that I can help inform the way forward. Because I don’t feel comfortable with somebody going down the path of making decisions on my behalf from their version of the world.
Bill Gasiamis 47:23
And from the version of the world where they consider themselves or elevate themselves to the point of expert, which they are in medicine, but they’re not in how I want my life to unfold and evolve. So I had a friend of mine, who was a radiographer at the Royal Melbourne Hospital, which is inconveniently further away from home.
Bill Gasiamis 47:51
Nonetheless, the fact that he was there, I was able to ask him to put the word out for me and find a neurologist. And these are the words that I said to him who’s going to talk to me? And he was able to find somebody willing to take on my case.
Bill Gasiamis 48:09
And that changed the course of my recovery, because from then on, even though she was the neurologist, and the person that was the expert at helping me stay alive, I felt like I was the one that was calling the shots. And I believe one foot wholeheartedly that I was because her approach was, tell me how you want to proceed. And my suggestion was, can we wait to not have brain surgery yet?
Bill Gasiamis 48:48
Are we at that stage where we can still wait? Or is it? Do we have to go in now? And she said, Look, we could probably wait. And to help you go down that path. Why don’t we do monthly MRIs for the next six months, and see how everything is changing or pay to notice what differences there are so that we can make informed decisions rather than just immediately decide to go in and potentially, we’re maybe going in where we don’t need to.
Bill Gasiamis 49:26
So that’s what we did. And I got to that point where everything was going well and I was great. And about two and a half years from the second bleed. I had the third blade. And when I went to the hospital, it was Kate Drummond, my surgeon who said, we’re going in this time.
Bill Gasiamis 49:48
I accepted I said no problem. She came back the next day and said I know I told you we’re going in. But are you on board? Do you want to go in? I say I want this over and done with whatever comes, comes, it’s time, let’s get it done. And let’s move on with life, regardless of what that looks like after the brain surgery.
Jenny Clarke 50:15
That was a vital element of your humanity, and helping you recover whatever happened to you, because you felt that you had some decision-making capability. Because when you’re in a hospital, and you don’t know what’s happening to you, it’s very hard to feel as though you can do anything. And that’s you or your family around you or your friends.
Jenny Clarke 50:47
And I think and lots of people say, to me, recovery starts in the acute state. And it’s a great thing to say, but I don’t quite know what it means in practice, because I think we’re so again, use a word that will use a lot fragmented in our approach. And the pathway of care is so fragmented, and so haphazard because it’s not systematic.
Jenny Clarke 51:16
It depends on which hospital you’re in which level of hospital you’re in, which country you’re in which town you’re in, and how long it’s been since you’ve had your trauma to actually being recognized as needing treatment. So I think that that is such an issue.
Jenny Clarke 51:35
And I think that the recovery should be you understanding the bigger picture and being told the bigger picture quite early on. And again, that’s not medical practice, people only will give you the information that they think you need to know, one day at a time.
Bill Gasiamis 51:55
And yet, they will give many stroke survivors, the bigger picture on the downsides, the possible downsides it’s like, you probably never walk again, talk again, do anything and it’s like, hang on a second, you know, how about giving me the what’s possible speech? I don’t get that at all. That’s so strange, and yet, I hear about it still to this day in 2023. I hear about it almost all the time.
Jenny Clarke 52:24
Absolutely. And so I talked to a great group of neuro neurologists in the States, who, you know, when we launch said, you know, we’d love to see how we can support you because our membership in the States, 1000s, of neurosurgeons and radiologists, you know, that they don’t have the understanding that you can recover.
Jenny Clarke 52:49
Because today people are told, okay, that’s it, you had a stroke. You know, we can’t do any more for you. You are where you are, which is patently untrue. Yeah, so that it’s, you know, it’s not to I don’t think it’s too high blown to say, we need a revolution in thinking to, you know, to every sort of, at every level, you know, we need wonderful neurosurgeons and doctors to understand the implications of their words, on patients and their families.
Jenny Clarke 53:28
And while they are doing it, for whatever reasons they’re doing it, there has to be an understanding. People have to have hope. Because if you haven’t got hope, where can you Where can you go? Yeah, and there’s always hope, you know, any, there’s no one I’ve ever met or talked to, in this journey of the charity, that, you know, that can’t have hope.
Bill Gasiamis 53:54
So, it’s been a pretty heavy episode so far. But I want to transition from that because I did interview an amazing guy, Dr. J Mocco MD, MS for World Stroke Day 2022. And he’s a vice chairman of neurosurgery in the particular hospital that he works in in the United States. He’s part of an organization called Get Ahead of Stroke. And we had an amazing interview and he was so upbeat and encouraging.
Bill Gasiamis 54:32
And I clipped certain sections of the podcast interview specifically because and I quote, I’m going to quote him and I’m going to read a little bit transcript and this is what he said. I want to make sure that people know there is hope, and we are making some kind of headway he said.
Bill Gasiamis 54:52
“What I want to highlight is a positive thing that you just said and that I think is worth broadcasting which is people would say that after two years, they tied their shoelaces after three years, they walked a few miles. So that’s important with stroke, one of the amazing things is that you can keep getting better even after two years. And three years later.”
The Importance of Mental And Emotional Support
Jenny Clarke 55:16
Yeah, right. And, you know, it is, there is the equation of physical repetitions of exercise to be able to tie your shoelace, or to walk or to lift a cup. We also think that there is a parallel to that such a big part of life is the mental and emotional support that you need.
Jenny Clarke 55:46
Because while you’re doing physical repetitions? How would you get the motivation, day after day where you don’t see the changes that you pray and hope for immediately? Because it’s a slower recovery how do you keep motivated, and keep your mind alert that will in turn give you a lot more in your life when you think it’s all darkness.
Jenny Clarke 56:15
So I think having, you know, a structured approach to emotional recovery is vital. And I started Emilia and I started talking about emotional recovery right at the beginning. And you talked to neuropsychologists and clinical psychologists, and that’s one of the words they use to describe, but language is so clumsy, isn’t it? I think the whole words that are around all of this issue, you know, people understand to a certain degree that a stroke is a brain injury.
Jenny Clarke 56:45
What does that mean? So many types of brain injury. And somehow, you know, we say all the time in the charity, obviously, and we hear it all the time. And it’s just, it’s a confusing name. And then when you think about emotions, and emotional recovery, you know, depending on who you are, as an individual, you could think, well, how important is that?
Jenny Clarke 57:10
Is that just that very girly? Is it you know, you’re using all sorts of discrimination language to you know, to pigeonhole you? Anyway. So I just think when we talk about mental health and recovery, it’s more helpful. Because there is at least a level of understanding about mental health as well as physical health these days.
Bill Gasiamis 57:35
I love that. I love what you just said because at least the conversation about mental health is starting to happen and people are aware of it. So it’s one way to infiltrate the hearts and minds of the people that we need to get on board.
Bill Gasiamis 57:51
Because you’re right, going to the emotional part of the recovery does, you know, mess with people, I know that because I am advocating for emotional recovery, after stroke as a very important second step to the physical recovery that happens after the hospital. And when you put it out there, when you put out there the words, the emotional recovery, people don’t grasp the concept.
Bill Gasiamis 58:24
And often they’ve got their barriers around going to emotionally challenging spaces in their own heart from past traumas, past relationship issues, or past challenges around emotions. And therefore, you’re thinking about, you’re looking at the peak of the mountain, you’re thinking of, I’ve got to be right at the peak of the mountain now and not realizing the path that’s ahead of you.
Bill Gasiamis 58:53
And that becomes overwhelming. And it’s like, we’re not going there. But at least the conversation about mental health has started to come into our vocabulary. And people are getting appreciation for what that means, especially after two years of lockdowns, COVID restrictions, and all the stuff that we went through. Because most people can relate to that now.
Bill Gasiamis 59:16
But I like to tell people that stroke recovery is a mental, physical, and emotional approach. It’s a three-pronged approach, and you have to address every one of them equally. Because if you don’t do any emotional recovery, after a stroke, and you just do the physical recovery, you’re creating emotional energy around your stroke and your recovery that gets in the way of the rest of the physical recovery that needs to happen in the head.
Bill Gasiamis 59:57
And the mental recovery if that’s not dealt with then you also get in the way of the physical recovery that has to happen in the head. And then you’re not supporting the body efficiently and well, because you’re wasting energy, overthinking things and becoming distressed and becoming anxious and becoming depressed and a whole bunch of other things.
Bill Gasiamis 1:00:26
So I feel like part of the journey for me that made me brag about my success and brag in a lovely way to encourage other people to brag about my success was that I feel like I’m fully healed. Even though I live with deficits every single day, I feel like I’m fully healed from my stroke experience, because I was able to do all the mental health work, the emotional health work, and then all the physical work that put me back on my feet, and made me my ball and access and be a part of my community.
Jenny Clarke 1:01:17
Yeah, you’re so right. So it’s an artificial barrier between your mental health and your physical health. It shouldn’t exist. It’s a project of 21st or 20th-century medicine. And hopefully, in the 21st century, that is going to change. Because it is about, you know, we have a wonderful supporter, somebody who had a very serious brain injury. And she’s a copywriter.
Jenny Clarke 1:01:44
And she’s worked with a wonderful animator who’s got a fabulous, we have a wonderful animation, which is the words of people recovering from brain injury, explaining what it’s like, to people who don’t know, and that’s on our website, and I can send you a link.
Jenny Clarke 1:01:57
But this wonderful girl said, that brain injury just doesn’t happen to the brain, it happens to the whole person. And that is something that has to be acknowledged because of the complexities of this. To me, that’s one of the simplest ways of defining what a brain injury is.
Jenny Clarke 1:02:15
It’s a trauma that happens throughout your body your mind and your brain. And there are no, there’s no difference between your brain and your body. It’s gotten in terms of healing and recovery. It’s got to be done simultaneously and have as much effort put into it.
Bill Gasiamis 1:02:34
Completely agree with you. When I went to my psychologist recently and had a conversation about overcoming life’s challenges, we got to the part of the conversation where I challenged her understanding of the origins of the word psychology. And because I’m from a Greek background, I think I’ve got a bit of an advantage.
Bill Gasiamis 1:02:58
And she was kind of a little bit perplexed that I would ask that question, and she wasn’t able to give me an answer. And that didn’t diminish her ability to support me and be an amazing guide in my life. Not. But it gave me an insight into the world of help. If somebody is a psychologist, and they don’t know, the origin of the word psychology, and what it means that shows how far away we’ve come from, and where the healing needs to be.
Bill Gasiamis 1:03:42
And the fact that we’ve elevated the head to the point of being the most important thing that we need to pay attention to, and provide resources to. And we’re missing the other part. So I had, of course, researched the word I had read about it extensively over the years, and I knew about it, because I have a Greek background, and I’m pretty fluent in Greek.
Bill Gasiamis 1:04:02
And then I Googled it, like I have just now so I can read it to you. And the origin of the word psychology is formed by combining the Greek word psyche, which means soul. And, then with the word, logia, which is words, but also reason.
Bill Gasiamis 1:04:31
So it’s and logos refers to the head, it does kind of refer to the head. So it’s kind of a combination of these two words. And what I get from it is that it’s about the it’s like the soul logic. Its first word in the word psychology refers to the soul the psyche and then it refers to logic.
Bill Gasiamis 1:05:02
And when you have a conversation with somebody who’s a psychologist and has been to school for probably 10 years and is amazing at their job, but they don’t know that, it just shows where the disconnect is from the professions that help, and why sometimes they miss the mark and aren’t as effective as they could be in guiding people to get beyond the mental health issues and the emotional issues and all the stuff that they go through.
Jenny Clarke 1:05:39
So what are we going to do about it?
Bill Gasiamis 1:05:40
What we’re going to do about it is we’re going to continue this journey, and we’re going to support each other. And we’re going to promote organizations like Same You, we’re going to continue bringing together people who are on our team who think the way that we think and who have the backgrounds that we need them to have.
Bill Gasiamis 1:05:40
Like Dr. J Macco, for example, and all the other people that I’ve interviewed who are advocating for change, we will make a difference. It’s just a matter of how big you want to make this how much time you have in front of you, and how much effort we’re all willing to make.
Jenny Clarke 1:06:31
Well, everything, I think that the whole way forward is based around giving people their permission to do something about it. We’ve talked about this a lot. So building communities that will make a difference. I don’t know how to do it. I wish I knew how to do it. But I know that what needs to happen is there needs to be a call for change from the people who have been affected by the change.
Jenny Clarke 1:07:03
So you’ve got these huge issues like climate change, and we’re all affected by that. But it’s the vanguard of people who see what’s in front of them that make a difference. But with something like cancer when I was a child, which is a long, long time ago, and my mother’s large female family all had cancer of some sort.
Jenny Clarke 1:07:28
It was a secret, it was a stigma. It was ashamed, you had to be ashamed. And you didn’t mention the C word. And we were whispering about it. And so the secrecy around that, which has completely changed by so much effort by so many people, that I sort of equate, that’s where we are with brain injury and stroke problems because people are people still see having a brain injury as having something to be ashamed of.
Jenny Clarke 1:08:03
And something that is a stigma associated with it. It took Emilia a long time to talk about it. And we were told that she shouldn’t talk about it. Because nobody wants to hear about people with a brain injury. Because it means that something’s wrong with you.
Jenny Clarke 1:08:21
And if you look around the world, how many people with a public profile stand up and say, I’ve had a stroke or a brain injury? You can name about four or five people. And sometimes they are way, way older than when it’s happened to them.
Jenny Clarke 1:08:40
So I think that there’s a reason for that. And we’ve got to have everybody banding together to saying, well, you know, what’s the stigma, if something happens to you? It’s not anything that you can do something about, but you can take control of the way people view you and view your identity.
Jenny Clarke 1:09:00
That’s, I think, vital. We need to start a movement for change. And we’ve got we’ve got everybody who’s experienced it. They’re the people and we’ve got to find mechanisms to help people come together to build communities in their local area, to connect to other communities.
Jenny Clarke 1:09:19
And then it’s got to have a life of its own, because they use a lead movement for change, demanding better recovery services, demanding a better understanding of the issue, and demanding a change of attitude for people who are trying to live their lives after something’s happened to them.
Jenny Clarke 1:09:39
Just like cancer, you don’t look at somebody with cancer and judge them. But there’s judgment with people. When you think you’re meeting somebody with a brain injury, and you’ve alluded to it, you know, I’ve met so many people, you know, they can’t handle that change at a supermarket checkout, and people sort of push past them and think they’re drunk, or on drugs, or, you know, there’s a lot, you know, just a lot.
Sharing Your Stroke Recovery Story
Jenny Clarke 1:10:06
So we need to start somewhere. And so what we’ve been trying to do is just by starting to say to people tell your story to us, because Emilia launched the charity on the 21st of March 2019. And she said I’ve told you my story because she told it to the New Yorker to the edge of the New Yorker. And she explained what happened.
Jenny Clarke 1:10:30
And she said, Now you tell me your story. And so our charity is being shaped by the response. Because when we started the charity, we didn’t know what to expect. We were sure that we wanted to find funding to help with research, particularly for young adults after brain injury. And we also see that there’s a lack of training in mental health.
Jenny Clarke 1:10:56
And we see that there is a lack of innovation. When we’re mainstream technology, like, you know, using Zoom that we’re doing now, can be used with clinicians to do group therapies and recovery programs. And the COVID, we were able to do that in the UK with COVID. And we funded a pilot that has gone on to get extra funding from other people. And so now with that spreading in the UK.
Jenny Clarke 1:11:24
So there are so many things that we can do, but the thing that is extraordinary about our charity is that shaped by people who have experienced brain injury in their families because we have something called portraits. And I have a team of three amazing volunteers. And Viro, who you met, is now working for us doing other things as well.
Jenny Clarke 1:11:45
But she has been managing a team. So people write to us, and we ask them if they want to tell their story in public. And generally, people do. Because sometimes people say it’s the first time they’ve ever really talked about it and being honest. And that is a therapy in itself.
Bill Gasiamis 1:12:06
That’s my experience with stroke survivors who come on, haven’t spoken to anyone about it for 10 years, and decide that the first person they’re going to speak to about their stroke is me on the podcast that goes out to the whole planet.
Jenny Clarke 1:12:22
We’ve got to learn from that. I mean, everything is a learning experience, isn’t it? Because these things are just so many, there are still lots of secrets in here when we have to just get rid of all secrets to deal with brain injury.
Bill Gasiamis 1:12:36
Yeah, who are some of the partners that you guys have come together with?
Jenny Clarke 1:12:42
So in the States, we started with Spaulding rehab, Hospital Boston. And so we funded through Emilia, her own money, and also doing silly things online when she was in Game of Thrones that people wanted to donate to win, opportunities to meet her and be on the red carpet.
Jenny Clarke 1:13:04
So we raised a lot of money by the generosity of all of her fans. And so we’ve funded a major three-year program, where the particularly young investigators and Spaulding a wonderful hospital, part of the Harvard Medical Group, are looking at why some people are resilient, more resilient, in their approach to recovery than others.
Jenny Clarke 1:13:27
So that’s something that hasn’t been looked at too much. So that’s happening. And that’s a very big project. We then worked with the Royal College of Nursing in the UK, and said, we want to see how we can support nurses because that’s something we haven’t talked about. But we see how important nurses are to world health and individual health.
Jenny Clarke 1:13:50
So our journey was helped tremendously by Emilia as nurse Tina, that years and years after her first brain injury, we still were able to talk to Tina when there was a fear that something was going wrong. So we funded the first-of-its-kind training program for neurological nurses to look at how important research is that’s one module, how important mental health recovery is never been looked at before, and then obviously, the physical recovery.
Jenny Clarke 1:14:21
So it’s a program that’s run by Edinburgh, we’re in the second year. And we would love to be able to put that to different hospitals and universities and to share the learnings because it’s something that’s just very little training. So that’s the Royal College of Nursing at Edinburgh University. We’re also funding starting a major research project with Edinburgh again through the World College of Nursing to see if we can identify the need in terms of sizable chunks of data about the need for neuro recovery, particularly in young adults.
Jenny Clarke 1:15:01
And so those are ongoing, major, major projects that we fund. And then we started working with UCL UCLH, Queen Square when we started the charity, the first office had, we don’t have an office now because of COVID. And you know, who needs an office these days, but it was in Queen’s Square, so we could be physically close.
Jenny Clarke 1:15:22
And so I’ve been working almost daily with UCL experts in rehab. And so we started to do what they call neuro rehabilitation online enrollment. And I alluded to that earlier, which was just in COVID, when people couldn’t come into rehab in a hospital, or community nurses can’t go to it, or therapists can’t go to you. How can you do it? So this is a program that can easily be taken by any hospital or any group of therapists around the world.
Jenny Clarke 1:15:56
There’s a wonderful man, Professor Nick Ward at UCL, and he and his team and I worked on what that could look like. And so we have 10 people, 12 people on a screen with several people as a programmatic approach. So you can have, for instance, physiotherapy, you would think how could you do group physiotherapy, and that was the barrier. At first, the clinicians themselves didn’t think that it was going to be effective and impactful.
Jenny Clarke 1:16:24
But they worked out very quickly, if you had two physiotherapists one giving the exercises, and the other one watching and noting down what people were doing and able to do course correction. That worked. They also included something wonderful called Carers Cafe as part of this digital group therapy, to talk to the husbands, wives, partners, lovers, children, you know, parents, to get them to talk about the issues that they face.
Jenny Clarke 1:16:56
So that’s been great. So we funded that for six months in the UK in London. After the funding ended, and we couldn’t afford to do it anymore, they got together themselves as a peer-to-peer group, and then we got some more funding from the wonderful UK National Lottery. And so that’s not being rolled out in Lancashire, with another hospital group, where they’ve taken their therapists and what they look like because every group is different.
The Biggest Project by Jenny Clarke And Same You

Jenny Clarke 1:17:20
And they’ve interpreted the Enroll concept to fit what they can do as an addition to their recovery programs. And we’re on the verge of the National Health Service, seeing if they can be commissioned, so it’s going to be rolled out. And maybe it is, maybe it isn’t. But that’s one of the things we’re doing. And then our big project is a real blue sky blueprint for what could a recovery center of the future look like.
Jenny Clarke 1:17:51
So I’ve been working with UCL for years on this. And we built it and built it and built it. And so it’s massive, and it’s far too big to try and get funding for. But we’re just on the point of getting some funding fingers crossed in the next couple of weeks, where we can start to work in a small way to work out the feasibility of a mental health pathway. And the idea of a feasibility study is to interrogate researchers as well as clinicians.
Jenny Clarke 1:18:21
And so it’s going to be acceptable as an evidence-based, cooperative program, where patients and their families are saying what they need and want for mental health support. And so we hope we’ve got the funding secured for that. And that’s going to be a six-month program. And then we hope we’ll get funding to pilot that in London, and then build that into something that we can now see as a vision of prevention and recovery center that can be lifted and shifted around the world.
Bill Gasiamis 1:18:54
Wow. Sounds like you’ve been busy.
Jenny Clarke 1:18:57
And we haven’t got the money. So anybody listening to this would like to get involved. Please send me an email at [email protected]
Bill Gasiamis 1:19:09
We’re gonna have all your details there so people can connect with you. I love the sound of the possibility of a specialized hospital or specialized care facility for people so that you guys can take them through the whole holistic approach to recovery from a brain injury.
Jenny Clarke 1:19:31
Using the performing arts, using the visual arts, using the environment using healing buildings using different things.
Bill Gasiamis 1:19:40
You may be aware that Olivia Newton-John was a resident of Melbourne before she hit the big time and became popular in the United States and around the world. As a well-loved Melburnian. She was very heavily involved because of her couple of cancer diagnoses earlier on in her life.
Bill Gasiamis 1:20:09
She was very big and she played a massive role in creating a similar type of center in Melbourne called the Living Olivia Newton-John Center, I think that ONJ Cancer Center they were able to bring in things like music therapy, and a whole bunch of other things. And my wife who’s doing a psychology, psychology degree by the way, knows the origin of the word psychology. She’s doing the final years of her master’s.
Bill Gasiamis 1:20:58
She was able to as one of her projects, she was able to do a study to see how people responded to what I’m pretty sure was music therapy. And reported back to you know, school the findings, it was an amazing insight into how, with enough noise, for lack of a better word.
Bill Gasiamis 1:21:29
You’re able to create and generate the movement that brings the people together, that raises the money that funds the center that allows people who are experiencing cancer to go to and have the medical treatment and in the same place have all the other necessary treatments that support the medical system, and add quality of life.
Bill Gasiamis 1:22:04
While people are going through some of the hardest times of their lives, so it’s not like it has never been done. And I feel like you’re on the verge of something amazing. You know what they say, to be an overnight success, it takes about five to 10 years, so you’re not that far off.
Bill Gasiamis 1:22:24
And then one day you’ll be an overnight success, I’m very happy to get behind the work that you guys do. It’s exactly why I started the podcast to raise awareness about not only what it’s like to be a stroke survivor, or a caregiver for a stroke survivor or a family member or a stroke survivor, but also to bring awareness to amazing organizations like Same You that are doing the type of work that I would have benefited from if it existed where I live.
Bill Gasiamis 1:22:54
And it’s so challenging for me to thank people for doing the work that they’re doing. The only reason I know you’re doing the work that you’re doing is because you’ve gone through something traumatic and life-threatening and difficult. And you’re living with, you know, some things that are in your head that you’ve got to contend with.
Bill Gasiamis 1:23:21
So I’m really glad that we connected I don’t feel that this is going to be the last time we connect and work together or support each other. I feel that I’m on board. I’ll help wherever I can. And however I can. And if anyone wanted to donate to sameyou.org, how would they go about it? What’s the best way?
Jenny Clarke 1:23:48
Well, it’s very simple. It’s on our website, sameyou.org You’ll see buttons everywhere saying donate. And you go into a simple system where you can donate in any currency. And you’ll also see the things that we’re doing. Not just the portraits, and the stories, we have recovery home videos the people have donated. We have a wonderful neuro directory, which at the moment is only in the UK.
Jenny Clarke 1:24:16
We’ve got working we’re working with UCSF in the Bay Area in the States to try and extend that. We’d love to have, you know, Australian ideas and therapists and clinics and hospitals that might want to get involved. Everything is most of what we do is funded by volunteers and are funded in terms of we have 21 volunteers around the world, some in Australia, and certainly some in New Zealand with a wonderful Veronique.
Jenny Clarke 1:24:46
And across the states where people are giving their time to help Same You you because we can’t afford, you know, great graphics and you know, we have to pay, you know, hundreds of 1000 for its agencies. So we get through making graphics for people who are wonderful at it. And they just donate it and do their time. So we have a fantastic group of people that support us now.
Jenny Clarke 1:25:08
But so you can donate, you can see the things, the campaigns that we run, you can see our new buddy program is going to be online soon where we’re starting in the UK. So we have buddy people helping each other. Because they’ve gone through it just as you’re trying to do with you and are doing with your podcast, how your experience is helping others with a program and on neuro directory.
Jenny Clarke 1:25:31
And, I think that by coming together and extending that, and extending a community and seeing how we can start to talk to build a movement. That would be phenomenal. If anybody was listening to this, that’s got experience, ideas, and energy around it. Maybe they talk to both of us.
Bill Gasiamis 1:25:54
Yeah, absolutely. I look forward to it. Anything that comes my way, I will pass your way. But at the same time, anyone that’s listening. At the end of the podcast, we’re going to have the show notes, there’ll be the show notes recoveryafterstroke.com/episodes. That’s where you’ll be able to get all the contact information for Same You.
Bill Gasiamis 1:26:17
You can sound like you can donate your time as well as money if money is not something that you can manage to donate. And you can also donate your creativity skills if you’ve got skills in creating something for the team that they want to put out whether it’s a flyer or graphics, or whatever it is. So that’s amazing. You can do that. Jenny, thank you for being on the podcast. Thank you for reaching out.
Jenny Clarke 1:26:47
I’ve enjoyed it so much. And thank you for doing what you’re doing. It’s brilliant and will make a difference to so many people I know.
Bill Gasiamis 1:26:57
Thank you once again for joining us on today’s episode. I just love the work Jenny and Emilia are doing and the organization that they have set up, I’m thrilled that they are doing the kind of work that is making a massive difference to people’s lives. Now to learn more about my guests, including links to their social media and other pages, and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:27:23
There you’ll find links to the same you donate page and if that’s something that you would like to do, they accept donations in any currency. And as well as that you’ll find the link to the short film untold stories of brain injury voices from stroke survivors. Go ahead and check it out. If you’d like to support this podcast, the best way to do that is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:27:51
If you’re watching on YouTube comment below the video it’s really important and it makes the video accessible to a whole bunch of other people like this episode and to get notifications of future episodes. Subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come join me on the show.
Bill Gasiamis 1:28:14
Interviews are not scripted, you do not have to plan for them all you need to do to qualify as a stroke survivor is care for someone who is a stroke survivor. Or you’re one of the fabulous people who help people who are stroke survivors just like Jeyie and Emilia.
Bill Gasiamis 1:28:31
So go to recoveryafterstroke.com/contact and fill out the form. As soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:28:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Their 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 in all content on this website at any linked blog, podcast, or video material control.
Intro 1:29:13
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances, or health objectives.
Intro 1:29:36
Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:29:52
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Intro 1:30:12
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The post Jenny Clarke’s Vision for a Brighter Future for Brain Injury Recovery – SameYou.org appeared first on Recovery After Stroke.
1 hr 31 min
February 22, 2023 SameYou.org: Jenny Clarke’s Vision for a Brighter Future for Brain Injury Recovery
Jenny Clarke together with her daughter Emilia Clarke are the founders of the charitable organization SameYou.org, a non-profit that supports young adults who have suffered from brain injuries, including stroke.
1 hr 31 min
February 21, 2023 From Emilia’s Aneurysms to SameYou.org: Jenny Clarke
Jenny Clarke together with her daughter Emilia Clarke are the founders of the charitable organisation SameYou.org, a non-profit that supports young adults who have suffered from brain injuries, including stroke.
1 hr 31 min
February 13, 2023 A Guide To Understanding Your Stroke Recovery – Bill Gasiamis
Successful Stroke Recovery – Discover the 10 things stroke survivors can do to have a great recovery and find the silver lining in their experience. Get motivated and uplifted by the resilience and positive mindset of these individuals. Watch now and see how a stroke can be a blessing in disguise.
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Highlights:
01:10 Introduction
04:01 What Stroke Survivors Have In Common
09:14 The Emotional Roller-Coaster Ride of Recovery
19:29 What’s Important About Neuroplasticity
29:50 Let’s Talk About Nutrition
41:38 What Happens When You Discover Your Purpose
46:44 Creating A Community
50:50 The Stroke Recovery Mindset
Transcription:
Bill Gasiamis 0:00
So if you’re somebody who is in pain emotionally, because you’re afraid to go with the emotional pain, you’re just swapping one emotional pain for a different emotional pain. And the one that you’re swapping out with is an emotional pain that lasts forever.
Bill Gasiamis 0:17
If you never deal with the emotional problems of the past, you are going to be living with the emotional problems and pain of the future, that will continue to come because that’s what happens in life stuff continues to come. We are not immune to life.
Bill Gasiamis 0:35
As you are aware, if you’re a stroke survivor, you’ve already experienced a bloody ton of life. And what you don’t want to do is have that cumulative effect impacting you negatively. And making things worse and decreasing the level at which your brain can rehabilitate.
Intro 0:57
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Successful Stroke Recovery
Bill Gasiamis 1:10
Hello, and welcome to episode 237 of the recovery after stroke podcast. If you have been following me for a while, and would like to get updates more often go to instagram.com. And in the search bar type recovery after stroke and come and follow my page. Over there, you’ll be joining more than 5000 other people that already follow my page.
Bill Gasiamis 1:33
In those posts, you will see there are lots of people getting involved, just like you in conversations, sharing their experiences with stroke and learning from each other. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:54
This actually means the world to me, and makes the show more visible to the algorithm and pushes it in front of more people who are stroke survivors like you that need this type of content and may benefit. In today’s episode, I will be answering your questions now. I made a post on my Instagram page quite a while ago now.
Bill Gasiamis 2:17
Which went, what are some of the stroke related questions that you would like my thoughts on? And I had a lot of responses. And I’ve had already answered a ton of them on episodes 224 and 225. So if you haven’t heard those yet, go back and have a listen to them. And in this part, part three. And yes, it took me 11 More episodes to get back to here. I will be answering a question from Andy Dovey, who was a guest on my podcast as well on episode 206.
Bill Gasiamis 2:55
And Andy had a cerebellum stroke. And he asked to hear my thoughts on the common threads between all the stroke survivors that I’ve interviewed. Now, it’s a pretty massive question. And I probably won’t mention all of the common threads, I’ll mention the ones that I think are important. And there are lots of common threads.
Bill Gasiamis 3:18
But the question that he asked still continues, and it says, Are there personality traits that you’ve identified that are more prevalent in the more “successful survivors?” What enables somebody to make more improvements than someone else? Is it the psychological? It’s the psychological aspects that intrigue him. That intrigued Andy.
What Stroke Survivors Have In Common
Bill Gasiamis 3:45
So I’m going to answer that question, there is definitely a lot of things that I have found that are very much common in certain stroke survivors. And I will tell you what those are right now. Okay, so there are a number of things that make people feel like they are getting ahead and making a good inroad into the stroke recovery. And this is despite what the challenges are that they continue to live with.
Bill Gasiamis 4:17
So they may have deficits, they may have paralysis on one side of the body. They may have vision problems, they may have an inability to walk and talk 100% like they did before the stroke. But these things are definitely the things that make people stand out as “people who feel like they are achieving a really high level of recovery, even though they’re living with deficits.”
Bill Gasiamis 4:45
Now, one of the first things that I want to mention, one of the main things that I find is that those people have a recovery mindset. So you might ask what is a recovery mindset? Well, a recovery mindset is the type of mindset that is honed in or tuned in or fine-tuned to becoming somebody who recovers from their stroke, that does not mean going back to the way they were or the condition they were before stroke.
Bill Gasiamis 5:24
So it does not mean going back. And being the same as they were before they had the stroke, it means that they are going to take on this recovery, and they’re going to move towards getting better each and every day. And it is a mindset. So they don’t necessarily focus on the negatives, they don’t necessarily focus on what they haven’t got occur to, still or anymore. They focus on how far they’ve come and where they want to go.
Bill Gasiamis 5:56
So they’re looking at the type of things that they can achieve, and get better at rather than looking back at the things that they have lost or supposedly or maybe become worse. And what that does is that allows them to focus on seeing the wins, seeing how far they’ve come, noticing what they’ve overcome, noticing what they’ve been able to achieve, and not focusing on the negatives.
Bill Gasiamis 6:28
And that gives them a boost in this state of mind, that gives them a boost in the way that they feel about themselves. And that gives them encouragement to keep going forward and continue the focus on the goals, the things that they are going to overcome and the things that they’re going to achieve. So they have a recovery mindset. That is the first thing that they noticed.
Bill Gasiamis 6:54
Now the next thing is that all of the people who I’ve spoken to who seem to have a more “successful” recovery or feel like they are doing well within their recovery, have done some kind of emotional work. And when I talk about emotional work, I’m talking about work in the heart, they’ve gone back perhaps, and dealt with some emotional traumas.
Bill Gasiamis 7:21
And the reason why they’ve dealt with emotional traumas is because somewhere, they realize that those emotional traumas from the past that they harbor have been getting in the way of their recovery, because stroke is not a one approach thing, you have to address all the issues in your life to get out of the way of your recovery. And some of the things include mindset, like I said a bit earlier, but emotional recovery is a very big part of it.
Bill Gasiamis 7:52
Because without the emotional recovery. And without having dealt with the difficult emotions from the past, how are you meant to deal with difficult emotions from now, they can potentially all become, all too many or too much and put you in a situation where you are struggling, not only because you’re dealing with the new emotional challenges that you’re feeling because of the stroke.
Bill Gasiamis 8:16
But because of the cumulative effects of the emotional challenges that you’ve had, for an entire lifetime, that perhaps you were afraid to go toward, and deal with.
Bill Gasiamis 8:31
It’s a situation of going where the pain is, and then dealing with the pain so that you can overcome that pain from the past. Every time you do that you get better at overcoming traumas, from the past things that you’ve struggled with, with some emotional challenges, you’ll overcome them quicker than others. That’s why I recommend ticking off all the small things that you can as quickly as possible.
The Emotional Roller Coaster Ride of Stroke Recovery
Bill Gasiamis 8:59
And then as you get good at dealing with the emotional traumas from the past, then you can deal with the current emotional traumas and the ones that are going to come in the future because let me tell you, stroke is an emotional journey. It is a roller coaster ride, it is definitely going to make it difficult for some people to handle what it is that they are experiencing.
Bill Gasiamis 9:25
I myself experienced massive amounts of emotional turmoil when I had my three brain bleeds, but by the third one, I had done a lot of work. So it wasn’t so much more traumatic than the first one was, for example, brain surgery wasn’t a breeze but compared to what I was dealing with with the first Brain Hemorrhage, it was a completely different experience.
Bill Gasiamis 9:53
And I gotta tell you that I did a lot of emotional work between the two and a half years from the first incident, to the third incident, and then brain surgery. And that help that I got. And that work that I did for my emotional challenges actually went a long way to making my recovery and learning how to walk again and use my left side again, and get back to my life again, it made it a lot easier.
Bill Gasiamis 10:20
Now, it took me seven years before I got from the first Brain Hemorrhage to feeling like myself again, or in some way, being able to say that I feel like myself, because I still have the numbness in my body, I still have the left side deficits, I still have some balance issues, I still have weakness in my left side, I still have the tingling sensation, and all the things that go with stroke when you’re impacted on one side of your body.
Bill Gasiamis 10:53
But my emotional experience, and the way that I think about that now is nowhere near what it was compared to what it was at the beginning of this whole process and this whole saga. So emotional work will help you overcome your traumas from the past, it will improve your emotional intelligence, it will help you overcome those ideas and thoughts that you had about whether or not it’s safe to go to emotional trauma and deal with it and take it on.
Bill Gasiamis 11:27
And it’ll help you get to the point of understanding that you are capable of dealing with emotional traumas from the past, you are capable of overcoming them. And you are able to become more resilient to the emotional turmoil. If you’re somebody who wears their hands on their sleeve, like I was, trust me, the more emotional work you can do, the better off you will be, I went and got help.
Bill Gasiamis 11:56
And I made sure that it was something that I focused on. And this is also what other stroke survivors have done, they’ve been able to get in touch with their emotional side, develop it, deal with it, attack it, face it, or whatever the words are that you want to use, they went where the pain was. And let me tell you about going where the pain is. Once you go there, the pain goes away.
Bill Gasiamis 12:21
So if you’re somebody who is in pain emotionally, because you’re afraid to go with the emotional pain is you’re just swapping one emotional pain for a different emotional pain. And the one that you’re swapping it with is an emotional pain that lasts forever. If you never deal with the emotional problems of the past, you’re going to be living with the emotional problems and pain of the future that will continue to come because that’s what happens in life stuff continues to come.
Bill Gasiamis 12:54
We are not immune to life. As you are aware, if you’re a stroke survivor, you’ve already experienced a bloody ton of life. And what you don’t want to do is have that cumulative effect impacting you negatively. And making things worse and decreasing the level at which your brain can rehabilitate themselves. Now, the next thing that people have in common, somehow they tap into their intelligence of their gut. So what do I mean by that?
Bill Gasiamis 13:33
Well, if you hear yourself or if you’ve heard other people say that I used my gut or I followed my gut, or it was my gut instinct. Well, that’s what these people have done, they’ve been able to somehow use their gut instinct to help guide their recovery.
Bill Gasiamis 13:33
Now, I did this a lot with my stroke recovery, my brain, after the second bleed, pretty much completely switched off, I was unable to use it to make any real decisions, any important decisions that are needed to make about my life, about my medical needs, about anything that was happening, my life basically went on hold. And it was just a holding pattern until I worked out the way forward. And it was my gut instinct that guided me really well at the beginning.
Bill Gasiamis 14:25
And a lot of people who I deal with, who say that they are doing well , “having a very successful recovery”, will go to the gut instincts. mine told me to set my first lot of doctors and the neurologists that I was seeing and change hospitals, because they were having conversations about me at the end of my bed, they are not including me. And when I did have questions that I asked about my prospects and about what was going to happen going forward?
Bill Gasiamis 15:02
They didn’t really want to commit and answer any of my questions. So I felt like I was alone, I felt like I couldn’t move forward with the people that were put in charge of my health care, especially since they weren’t involving me. So it was my gut instinct that said, you gotta get out of here. So I reached out to people that I knew.
Bill Gasiamis 15:20
And I made it, so that I could find a neurologist and a brain surgeon and a different hospital that will help me and will talk to me in a language that I appreciated. And as a result of that, I found that amazing surgeon, Professor Kate Drummond, who was at the Royal Melbourne Hospital, who answered my questions, spoke to me amazingly, her team was awesome.
Bill Gasiamis 15:46
And as a result of her amazing work and monitoring of my conditions, it took some time, but we finally got to brain surgery. And at that time, she did an amazing job of removing the faulty blood vessel in my head. And then I began the journey of rehabilitation and getting back on my feet. So I followed my gut instinct. And so do a lot of the people that I speak to about stroke recovery, they tune into the gut instinct.
Bill Gasiamis 16:15
Now there is a couple of ways that you can increase the conversation that you have with your gut, you can specifically go to your gut, and you can go there and you can talk to it. It takes a little while to respond. But if you close your eyes, and gently go and ask and place your hand on your belly, and ask yourself a question, and specifically ask your gut, what it thinks of that particular question, you will get an answer.
Bill Gasiamis 16:44
It won’t be immediate, it might take a few seconds, maybe 30 seconds or more, and you will get a response. So if you want to do that, pause this episode right now. Go there and ask a question and see if you get a response. Okay, so if you’re back now, you might have noticed the response or you might not have sometimes the gut will process the question that you asked that, and it will ask you overnight, and it will answer it overnight in your sleep.
Bill Gasiamis 17:14
Or you might have a big aha moment the next day. Now, if your guts not talking to you, one of the reasons it might not be talking to you is because it is being overwhelmed by the type of food you’re consuming. So one of the next things that the people who consider themselves having a good stroke recovery is that they attended to their nutrition.
Bill Gasiamis 17:40
But I’m going to come back to that, and I’m going to talk about it in a while, because there’s a few things that I want to get through first before I go to nutrition. So your gut brain is your gut, is also known as your gut brain. It’s been very commonly referred to now by a lot of people in the medical field, as a gut brain researchers, and a whole bunch of different people, you can just Google, any search on Google get you a result, when you type in what is the gut brain, you’ll get an amazing amount of information.
Bill Gasiamis 18:13
So you can go there and check that out. And there are books that specifically talk about the second brain in your gut, it is considered a brain, it has neural networks, it is where dopamine, serotonin, and a whole bunch of other neurotransmitters are created. And they are created in the gut to be used by the brain, the brain does not create a lot of those neurotransmitters.
Bill Gasiamis 18:40
So when you are eating incorrectly, and you are putting stuff in your gut, that is going to inflame the gut and make it difficult to digest. Your gut is going to decrease the amount of neurotransmitters, it’s going to decrease the amount of support that it can give to your brain. So your brain can go along and do the healing that it needs to do. And then as a result of that, so it can also support Neuroplasticity. So that is an amazing thing.
What’s Important About Neuroplasticity
Bill Gasiamis 19:16
That if you think about the fact that you have said the words I’ve followed my gut or my gut instinct told me if you follow the words, then I told you that yes, that’s because your gut is your second brain. That should just work for you. You should understand that and that should go well. And if you don’t, that’s okay because it’s a pretty new concept. But what you could do is go and do some further research on that and be amazed at what you find out.
Bill Gasiamis 19:42
Now, I just spoke about Neuroplasticity, in not so many words. When I refer to if you get out of the way of the of the gut and you give the gut what it needs to eat, to create to support the brain. One of those things things that the gut supports the brain to do is Neuroplasticity.
Bill Gasiamis 20:05
It supports the brain to create new neural pathways and overcome where possible some of the challenges that you’ve experienced with your deficits that are that are related to the stroke, if your deficits, physical, or if they’re speech deficits or hearing deficits, there could be some situations where those deficits cannot be improved. And that might be because the damage done in that area of the brain has permanently impacted those spots and damage them.
Bill Gasiamis 20:39
But if there are areas where there’s some damage, and there is some deficits that are not going to be totally impairing their person in a permanent way, the Neuroplasticity is the other thing that a lot of the people who talk about having brain plasticity
Bill Gasiamis 21:05
that the other people talk about, who have had a very successful or good or are having a great recovery, they take advantage of Neuroplasticity. Neuroplasticity is a thing that you hear about now, and 12 years ago, it wasn’t a thing you, never heard about it just before I had my stroke in 2011 there was only a few people talking about it.
Bill Gasiamis 21:31
But the time I discovered Neuroplasticity was mid to late part of 2012 and the research on Neuroplasticity was fairly new. Now I did an interview with one of the forefathers of Neuroplasticity, a gentleman called Dr. Michael Merzenich. And that was episode 108, where we discussed what Neuroplasticity is and help particularly it works.
Bill Gasiamis 21:57
Neuroplasticity is something that you can practice without being physically active, you can imagine yourself doing something. And that is creating new neural pathways in the brain, just as if they would be getting created if you were physically doing that thing that you would like to do.
Bill Gasiamis 22:16
So what’s the benefit of that? The benefit of that is if you’re experiencing fatigue, or you can’t get on your feet yet, or you don’t have enough hours for therapy, or you insurance company doesn’t pay for therapy, or you’re on your own and it’s unsafe to get on your feet, you can imagine yourself walking, you can imagine yourself moving your hand, you can imagine yourself doing the things that you want to get better at.
Bill Gasiamis 22:41
And Neuroplasticity will be kicking in to create new neural pathways to support that. So that when you do get on your feet and start moving your legs or start moving your hand or start overcoming the challenges that you have already given yourself a head start so that it is less foreign to you when you get to the point of doing the exercise actually physically or in person in a rehabilitation setting.
Bill Gasiamis 23:07
So a lot of the people who I speak to will be taking advantage of Neuroplasticity. And they will be making the most of their time when they are not being physically active or they can’t access rehabilitation services, so that they are improving the neural pathways in their brain and overcoming the challenges on their own as much as possible. So they’re very motivated to overcome and get better in this way and overcome their deficits.
Bill Gasiamis 23:40
So the next thing that they do is they start to pay attention to their sleep habits. And they want to make sure that what they do is overcome some of the things that they are doing that get in the way of sleep, here’s some tips to help you perhaps get better sleep. If you’re struggling with that. One of the things that I do is as soon as the sunsets, all lights in the house gets switched off.
Bill Gasiamis 24:11
So if I’ve got lights on in a dark part of the house or if it’s not very bright outside, all overhead lights get switched off, and what I do is put on lamps. And those lamps have got warm light bulbs in them, you can get them in LEDs these days, they used to be the old incandescent lamps, the style of the old, original lamps. And that color is a warm kind of yellowy, orangey red.
Bill Gasiamis 24:40
And if you can get lights and lamps that do that, that certain goes some way to supporting and mimicking the type of light that you get. If you were in a cave many, many hundreds and thousands of years ago where the sun has set and in order to illuminate your surroundings you had a campfire, the kind of lighting that you use is going to make a big difference to the way that your brain understands whether or not it’s time to start shutting down and putting you into a sleep zone.
Bill Gasiamis 25:12
And the reason being is because any fluorescent or very bright white, stark lights mimic daylight. And when you have lights like that in the house, your eye receives that information, and it shoot and makes the brain and the body and your circadian rhythm think that you are outside and you’re getting the UV rays that are for awake time. So it’s changing the cycle that you may or may not be going into to help you support, dozing off and staying asleep.
Intro 25:50
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 26:14
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 26:33
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. And download the guide, it’s free.
Bill Gasiamis 26:52
You might have heard that blue light from TVs, computer screens and mobile phones are lights that interfere with sleep or can activate the brain to remain awake, even though it is bedtime. So it’s a good idea not to use those types of screens at night, at least an hour before you go to bed if you can switch those off. And if you have devices which allow you to use them in night mode, perhaps switch on night mode so that you can have those devices.
Bill Gasiamis 27:24
Change the color of the background lighting, decrease the blue lighting, and increase the warm, incandescent style lighting that mimics fire. So attending to sleep habits is really really important, go to bed at a regular time, every night. So that you start getting used to being in bed by a certain time and your body starts to know that it can start to wind down and decrease the stimulus in your brain.
Bill Gasiamis 27:55
And also, if you are struggling with sleep, and you think that you’re doing a good service by drinking alcohol, you are not going to actually be supporting good deep sleep, alcohol has been shown that it actually interferes with REM sleep, the part of the sleep cycle that helps the brain flush toxins out of it, refresh it and make it less inflamed. And alcohol does only potentially, maybe support people dozing off because it’s a day to you.
Bill Gasiamis 28:32
So it kind of puts you into sleep, but it actually makes you miss out on REM sleep on the deep sleep that you need. So if you’re drinking alcohol to go to sleep, you need to stop doing that, you can once again jump on Google and do any amount of research that you want about the link between alcohol and decreased quality of sleep. And there is just a ton of information.
Bill Gasiamis 28:55
So definitely don’t do that. Now, I know a lot of people on listening to this podcast will be consumers of marijuana or weed. And there are a lot of benefits for marijuana and weed. But it doesn’t help sleep either. It does today people and put them into a state of being able to get to sleep, but it does interfere with the sleep cycle. And it doesn’t allow people to rotate through the sleep cycle
Let’s Talk About Nutrition In Stroke Recovery
Bill Gasiamis 29:25
as well as they would have if they were alcohol and weed free. So short-term gain, but long term it is actually changing your sleep cycle your, sleep habit and it is decreasing the quality of sleep that you’re getting. It is therefore decreasing the rest and the recovery that your brain can get. And as a result of that you are getting in the way of your recovery. So here’s some food for thought for you to think about.
Bill Gasiamis 29:54
Speaking of food for thought that’s a great segue, because the next thing that people do as they change their nutrition, and I’ve already mentioned nutrition briefly and about the benefits of nutrition on the gut brain. And what food does is definitely either get in the way of your brain health, or support brain health, it either inflames the brain, or decreases inflammation, and your brain after a stroke is already inflamed.
Bill Gasiamis 30:24
So what you don’t want to be doing is you don’t want to be increasing the inflammation in your brain, you do not want to be doing that, you want to be decreasing the inflammation in your brain. And the best way to decrease inflammation in your brain is to cut out certain foods. And this is where I get to talk about a little course that I’ve put together that specifically answers this question.
Bill Gasiamis 30:47
Now, the thing about nutrition, it’s not necessarily about what you should eat, which is really important as well, this particular course, and the information that I’ve put together is about what you should not eat. And in order to put this together, I’ve brought along a couple of amazing people who have been interviewed by me. And one of them is qualified nutritionist Stacey Turner and her husband performance coach, Matthias Turner, who are both Aussies.
Bill Gasiamis 31:20
And we got together and we recorded five interviews, where we spoke about what we call “The Fun Five Series.” Actually, the fun five was not something that I coined, that was what the guys coined, but I loved it. And I use it to name this course, because the fun five are the foods that you should avoid after stroke. And there’s a lot of reasons why you should avoid them after stroke.
Bill Gasiamis 31:44
And I’m not going to go into all of them here. Because it’s this particular thing took us five hours to explain and put together. So the five foods that you should avoid after stroke are sugar, caffeine, gluten, dairy, and alcohol. Now, I’ve already spoken briefly about alcohol. But you need to understand all of the reasons why you need to avoid sugar, caffeine, gluten and dairy after a stroke.
Bill Gasiamis 32:10
And how that is going to go do well to support your gut health, which is going to do well and support Neuroplasticity, which is going to do well and support a whole bunch of other things in your body. Now, in that interview, we do eight reasons to quit sugar after stroke and seven reasons to quit caffeine after a stroke.
Bill Gasiamis 32:31
It’s a really comprehensive discussions and interviews, 8 Reasons To Quit Gluten After Stroke, 6 Reasons To Quit Dairy After Stroke and 6 Reasons To Quit Alcohol After Stroke. Now, when you get them, you pay $49 to access those courses. And you will basically be able to sit down and listen to actually more than eight hours of content, not five, all episodes, all parts of this particular course are available in audio in mp3, they’re available in a video, you’ll get to see the video as well.
Bill Gasiamis 33:08
And you’ll be able to print off a full transcript of all the content. So you can take notes, highlight things that are important to you. And they’re presented by myself. And like I said to amazing people who know a thing or two about nutrition, and how to get the best out of people, and how to help people perform and overcome injury and be better at life. And from day to day and at work and all the things that they need to do. You’ll have access to it at any time.
Bill Gasiamis 33:40
You don’t need to wait around and get it at a specific time. You’ll get lifetime access to the course once you’ve purchased them. And you will be able to leave questions in the comment sections that I will respond and answer for you. You’ll be able to get in touch with me. And we’ll be able to speak about them. One on one, I’ll be able to answer your question specifically.
Bill Gasiamis 34:04
And hopefully you’ll get a lot out of that particular course, in order to access that course just go to recoveryafterstroke.com/courses. And you’ll see a couple of other courses there. But the one that you’ll be looking for is the 5 Foods You Must Avoid Eating After Stroke. It’s a very comprehensive course. It’s only 49 US dollars. It’s over eight hours of content. And it’s five interviews with two of the most amazing people.
Bill Gasiamis 34:32
So I’m going to wrap this up quickly by just saying the five foods that you need to avoid are sugar, caffeine, gluten, dairy and alcohol. Now the next thing that people do to overcome their stroke and to start feeling like they’re making some progress and that they are becoming successful overcoming the deficits and getting beyond this situation that they find themselves in is they’re getting physical. So what does this mean? Well, they’re not necessarily running marathons.
Bill Gasiamis 35:09
Although I’ve interviewed a lot of stroke survivors that have, I’ve interviewed stroke survivors that have run marathons with foot drop, some that have participated marathons, by not running. But by walking. I’ve interviewed people who have participated in marathons by cycling in different versions. There’s a whole bunch of different ways that people have participated in amazing, crazy events that they wouldn’t have dreamed of before stroke, this is the most amazing thing.
Bill Gasiamis 35:37
Now getting physical doesn’t mean that you are attending grueling events, it means that you are just becoming physically active as best as you can. If that is from your chair, and you’re doing it sitting down and seated, and you can only do chair aerobics, or whatever it’s called. And that is perfectly fine.
Bill Gasiamis 35:57
But it is really, really important to get physically active after a stroke, the more physically active that you get after a stroke, and the more you will experience the opportunity to support your brain to heal from all the challenges, physical activity just spurs off a whole bunch of amazing neuro chemicals in the body. And it can only be created when you get physically active.
Bill Gasiamis 36:23
Yes, being physically active after stroke is probably harder than it’s ever been to be physically active, I totally get it, I’ve been there. And there are some certain exercises that I will not do, because I don’t enjoy doing them anymore. And one of those is running.
Bill Gasiamis 36:41
Although I can run I will avoid running because my balance is an issue. I’m always overthinking where my leg is going to go, whether I’m going to over-extend my knee, when I’m going to do damage to myself, and it is no fun. So I found an electric bike that I used to ride. And as a result, I get some physical exercise like that. I love walking, and I can do a lot of walking. So I do that instead of running. I don’t play sports anymore.
Bill Gasiamis 37:10
Because again, that physical impact that a lot of sports have is a challenge to me, and I don’t like being hit on my left side, it’s much easier for somebody to put me off balance and knock me over. And I’m not keen on getting myself into situations that are uncomfortable and where I risk hitting myself as well as injuring my head. So getting physically active, no matter what you do, is one of the most important things that you can do after a stroke.
Bill Gasiamis 37:38
Now, I have met people that interview people on the podcast, do physical exercises, to the extent that you and I couldn’t imagine like powerlifting, one of the people that I interviewed was Kelly Studebaker on Episode 106, who is a powerlifter, who uses only one side of her body to lift the weights because of the other side has been impacted by the stroke.
Bill Gasiamis 38:02
So physical exercise doesn’t have to be that crazy. But anything you can do with the good side of your body, or with the side that’s better than the other side. Or even with the side that’s weak and needs rehabilitation, don’t neglect that.
Bill Gasiamis 38:15
Just do anything you can to start getting to the point where you’re creating resistance in your body, whether it be from walking, cycling, weightlifting, I don’t care if it’s crawling, whatever you need to do, to get physically active, get help from another person, get training, get any coaching.
Bill Gasiamis 38:38
Get anything you can, ju st get physically active as much as you can, being sedentary is only going to make matters worse, it’s going to increase your risk of stroke, and probably a second stroke, it is going to decrease your health.
Bill Gasiamis 38:51
And it is not going to be a good long-term solution. So that’s another thing that other people who are considered that they are achieving better or going well or having a good stroke recovery are doing. And they are doing that in spite of their deficits. Now, the next thing that people do to achieve a good stroke recovery is they do some kind of an internal work. So we spoke about emotional work earlier.
Bill Gasiamis 39:20
Now they do meditation, like a heartful kind of meditation, what they’re doing is going in and concentrating on doing a guided meditation, whether they download it from YouTube or Spotify or some other and they get to go in quietly, to quiet the mind and start connecting with the other parts of their body like their gut and their heart. So a meditation practice is something that really does help to decrease stress levels. Decrease cortisol, helps to decrease blood pressure.
Bill Gasiamis 39:56
So there are a whole bunch of different reasons why a meditation practice, five minutes in the morning, five minutes at lunchtime or five minutes before you go to bed is all you need to start to have a positive impact on your health and your recovery and the way that you feel and the way that the brain is being supported after a stroke. So a harmful meditation, I specifically said harmful because in those meditations, I’d like you to be able to focus on that area of you on the heart.
Bill Gasiamis 40:29
And give yourself another way to connect to your heart. So that you can go to where some of the things that trouble you and give yourself an opportunity to gently and quietly just heal and overcome things that have been with you for a little while.
Bill Gasiamis 40:45
Anything you can do to support your heart via meditation, or another method is really going to help you and believe me, coaching, counseling, which is something that I’ve done for many, many years really will support that emotional intelligence upgrade, going to a great psychologist, will help you let go of some of those things from the past and change the way you think about things.
Bill Gasiamis 41:09
And at the same time, if you’re doing meditation, it’s going to be an amazing, beautiful thing that you can do for your body and start to support it in a way that perhaps you’ve never supported before. And if you’re a man, and you’re listening to this, and you’re thinking out and do meditation, or even if you’re a lady, and you’re listening to this, and it’s not for me, it could be for you, and just be curious about it and think about it and see whether or not you’d be brave enough to go there.
What Happens When You Discover Your Purpose
Bill Gasiamis 41:38
Now, this is a big one, discovering your purpose is the next thing that people do. Now, it’s not that they discover their purpose immediately. And all of a sudden, they know what the purpose is, is they start working towards doing things for other people. And somehow their purpose emerges. So what happens is they go through the process of saying, “Oh, my gosh, I’ve had a stroke, this is terrible.”
Bill Gasiamis 42:05
I’ve come some way in my own recovery. And I’ve learned some things. And I’d like to share them with other people. So they come on my podcast, they volunteer somewhere, they raise funds, they do anything they can to help themselves, but also at the same time, be helpful to other stroke survivors, it helps them find new people to connect to, who understand them. And I’m going to talk about that in my next step.
Bill Gasiamis 42:32
And the next thing that happens for people who are getting to the point of saying that they’re recovering well, and they’re having a good recovery in spite of their deficits and the challenges.
Bill Gasiamis 42:42
So what happens is, when you go towards the path of doing something purposeful, where there is a purpose for what you are doing, as in I’m going to volunteer to help these people or I’m going to go on a podcast to raise awareness, or I’m going to support the local food bank, or I’m going to cook a meal and take it to somebody, when you’re doing something with purpose that’s purposeful and has a good outcome intended, then what happens is, you discover your purpose.
Bill Gasiamis 43:17
Now, that is how I came about discovering my own purpose.
Bill Gasiamis 43:21
And I had no idea that I was on the path to do so. But I wanted to help, I wanted to do something for people that are having a stroke after I had one. I’ve been down this path for more than 10 years now. And when people came along and had a stroke after me, I had some experience that I could share. And I did it in the form of a podcast. And I didn’t want to do it alone. So I recruited other stroke survivors to come and share their stories.
Bill Gasiamis 43:46
And with them, I created the Recovery After Stroke podcast. And we’ve had more than 230 episodes now, where we share information that every single day somebody contacts me and says, that was an amazing episode. Thank you so much for that I really needed to hear that. And I really love your podcast and all those things. All of those responses and all those people that have come on my podcast and all the things that have come from this podcast, made me realize that I’ve actually found my purpose.
Bill Gasiamis 44:15
My purpose has become to be the person who creates the most podcast interviews of stroke survivors, and make a database of it that’s available to anyone who has come and had a stroke before us, or somebody who’s going to have a stroke after us so that they can not be in a position where I was and blindly trying to navigate stroke. After I was released from hospital, I don’t want anybody to be in that position.
Bill Gasiamis 44:44
And my purpose in life is to make sure that this podcast continues and the coaching and the support and the courses that I put together are all going to go towards helping people overcome stroke. So that is what some people do or a lot of the people do, who talks about having a great stroke recovery and overcoming their challenges.
Bill Gasiamis 45:05
That’s what they do, they start doing things purposefully. And some of them even get to discover what their purpose is, you’re not going to work out what your purpose is in your head, your head will not do that. Do not try and think about what your purpose is. Purpose is heart related thing. And it’s why it’s important to go back and do some healing, some emotional intelligence upgrades, some healing of those challenges that have
Bill Gasiamis 45:31
hustled your heart for many, many years. That is why mindful meditation, and heartful meditation is helpful and useful. Because what we want to do is we want to get you living your life via your heart’s desires, we want to get you living your heart’s desires via this purpose that you’re going to discover that you don’t know yet that you do not have to work out, you just have to start working towards doing purposeful things for other people.
Bill Gasiamis 46:03
It doesn’t have to be full time, part time, doesn’t have to be many hours a week, it can just be once a month, that’s all that’s necessary. Even if it’s 30 minutes a month, it doesn’t matter. But as soon as you start putting other people before you, and I’m not talking about with regards to your health and your recovery, yours first when it comes to health and recovery from stroke.
Creating A Community – Bill Gasiamis
Bill Gasiamis 46:27
But when it comes to helping people and doing something for somebody else that’s going to reward you, it’s going to make you feel great about yourself. And it’s going to make somebody else feel great about the fact that somebody is helping them. So do something purposeful, you might discover your purpose. That’s the next thing that is on the list. Now the last thing that is on the list, and this is a list of 10.
Bill Gasiamis 46:52
And it is an amazing thing that these 10 things are the things that people have in common to support them in overcoming the deficits over stroke and to have “a successful stroke recovery”, even though they still live with deficits and challenges and losses that the stroke has created, is they go about building a supportive community. And I’ve done that, how have I done that?
Bill Gasiamis 47:22
My community has been built on the podcast and brought people in and they’ve become part of my community. And I have more than 5000 followers on Instagram, and they’re part of my community. And I am part of their community. So together, we are creating a community of people, where we are able to go and learn and discuss and overcome things together. And feel like we’re not alone.
Bill Gasiamis 47:45
Now my community doesn’t only exist online, my community now also includes people on the ground. In my hometown, in Melbourne, it includes people overseas that I have caught up with. While I’ve been overseas, it includes people that I catch up with regularly or irregularly. But I have people that support me, they’re not people who are in my life, because it’s about them. They’re people that are in my life, because it’s about me.
Bill Gasiamis 48:12
And since they make it about me, I make it about them. I don’t have people in my life who drain my life, I do not allow people to come in and make it about them, and drain me of my energy so that I can put into them, and I get nothing in return from them.
Bill Gasiamis 48:28
This is a situation that is difficult for some people to deal with. When you have people in your life that are not about you. There are people in your life that are narcissistic, or have personality traits that you don’t like, that you would prefer not to deal with, as a result of becoming a stroke survivor.
Bill Gasiamis 48:49
Because you realize life is too short, you need to start slowly, just walking backwards and distancing yourself from people who are not going to be supportive of your recovery, who get in the way of your recovery. You know, some people are like bad food, they just get in the way of your recovery, they cause inflammation, they make things worse, and you do not want to be hanging around with people like that.
Bill Gasiamis 49:11
That doesn’t mean that you have to have arguments with them and break friends with them or make it difficult for them or anything like that. It just means that you have to replace the amount of time that you spend with them, that you are going to spend more time with people that fill your cup, people whose cup you feel, people where there’s a reciprocal relationship and there is mutual trust and love.
Bill Gasiamis 49:36
That is the type of people that you want to surround yourself the most with. You know, there’s a famous saying that goes that you’re the average of the five people that you spend the most time with. That is a really, really important thing to remember. Not only are you the average of the five people you spend the most time with.
Bill Gasiamis 49:54
You are also the average of the five people they spend the most time with, and the five people they spend the most time with And as a result of that, you’re being influenced negatively by negative people, if they’re hanging around with other negative people, and if they are hanging around with other negative people. So basically, if I’ve confused you, I didn’t mean it.
Bill Gasiamis 50:13
Basically, what I’m saying is the friends of your friends and their friends are also influencing you negatively. So if your friends, your five closest people that you hang out with, that you spend the most time with, negative to be around, hard to be around, not encouraging, making it about them, narcissistic or have other personality traits that are not helpful. You want to start decreasing the amount of time you spend with them.
Stroke Recovery Mindset
Bill Gasiamis 50:38
And you want to start increasing the amount of time you spend with amazing people that fill your cup more often. Now, that is the list. That’s the list that I’ll go back and quickly summarize. They have a recovery mindset. They have an emotional intelligence upgrade, and they go to the heart and they do some emotional work and heal traumas of the past.
Bill Gasiamis 51:01
They make use of their second brain in their gut, they support the second brain, they talk to the second brain, they follow their gut instincts, they listen to their gut, they are guided by their gut, they do things to start using the gut intelligence as a tool to guide their life going forward to take action on the heart’s desires. That’s what the gut is supposed to do. It’s supposed to help you take action.
Bill Gasiamis 51:28
So the more healthy your gut is, the less things that you’re putting into your gut and making it feel inflamed, the better your gut is going to respond and guide you and help you have great gut instincts about how to move forward. So that’s what they do. They also then use Neuroplasticity.
Bill Gasiamis 51:50
They use whether it’s physical activity or imagined activity, they make the most of Neuroplasticity that create new neural pathways in their brain to overcome the challenges that they are experiencing. And they may not be able to overcome them completely, but they do their best to overcome them as much as possible and to improve things always, always moving forwards towards improving things.
Bill Gasiamis 52:17
They sleep better, they look for ways to improve their sleep cycle and to make sure that they are getting deeper, more restful and more cleansing sleep. So they are doing that, they are making the most of their food choices and they stop consuming certain foods that I mentioned that are not good for brain health and recovery. They are not consuming food that are increasing fatigue and making fatigue worse.
Bill Gasiamis 52:47
And they are improving on eating foods that are decreasing inflammation and making fatigue less impactful. They are getting physical, some way shape or form, be it with an electric scooter, an electric bike, within a gym setting, whether they are walking or riding, whether they are doing it in their chair, just waving around their arms and waving their legs, they are getting physically active in some way, shape or form.
Bill Gasiamis 53:17
They are doing meditation, they are checking in with their body, their heart and their soul. And they are going internally and doing five minutes of meditation, I would recommend five, five and five, five minutes in the morning, five minutes in the afternoon and five minutes before bed. They are doing things purposefully and it’s helping them discover their purpose. And they are building a supportive community.
Bill Gasiamis 53:45
Now, I just gotta mention that a supportive community can also include doctors, your GP, it can also include your physical therapists, you can include a whole bunch of people that have already been involved in your stroke recovery that can continue to be involved in your stroke recovery. That supportive community can also include coaches and counselors, and psychologists and other therapists.
Bill Gasiamis 54:11
So your supportive community can be amazing. Just hanging out with supportive people more often, and let go and just slowly walk away from people who are not supportive. And I hope that what you’ll be able to do is learn a little bit from this and get to the point where you are now, thinking of some things that you haven’t thought before.
Bill Gasiamis 54:32
And this might be what leads you to some stage get to the point where you are feeling like you are at least successfully getting better and overcoming your deficits and moving through life and feel like you’re leading a fulfilling life and you’re living a life where you feel like you are once again a success, you are feeling like once again, that you are able to participate in life fully, and you’re able to be a part of your community fully.
Bill Gasiamis 55:02
And I just hope that this episode, inspired by Andy Dovey is going to be an episode that you’re going to take to heart and you’re going to listen to multiple times, I hope I’ve done a good job in speaking to you about it and letting you know my thoughts on the topic. The reason being is because these 10 things are going to be the chapters of my book, which by the way, I have just finished.
Bill Gasiamis 55:29
And in a couple of weeks, I’ll be submitting the first manuscript to my editor to start editing. And hopefully within the next six months or so there will be an actual book. But that’s why I know the answer to Andy’s question is because I interviewed people who said that stroke was the best thing that happened to them. And believe it or not, I’m one of those people. And I couldn’t believe that we had all these things in common.
Bill Gasiamis 55:56
These are the 10 things, that the people who say stroke is the best thing that happened to them have in common. And I hope that you have at least ticked off a few of these. And if you haven’t, you’ve got some idea of how to go about ticking off a few more. And then from that, maybe, just maybe in spite of all your suffering, and all your challenges and all the things that you dislike, and that stroke has done to you.
Bill Gasiamis 56:26
Hopefully, maybe one day, you might say that stroke from the perspective of a learning experience and how far you’ve grown in your life. Maybe stroke was the best thing that ever happened to you. Well, thank you for joining me on today’s episode, I hope that you got something out of it. It was pretty rapid fire. I spoke very, very quickly because there was a lot to get through and I wanted to make sure that this episode didn’t go forever.
Bill Gasiamis 56:57
But if you would like to support this podcast, the best way to do is leave a five star review. If you liked this episode, and you’re watching on YouTube, please do hit the Like, subscribe to the show. Tell your friends about it. Share this in your communities let people know about it. If you are a stroke survivor with a story to share about your experience, come and join me on the show The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 57:21
All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor or you are one of the people who helps stroke survivors. You’re also welcome on the show. All you have to do is go to recoveryafterstroke.com/contact fill out the contact form.
Bill Gasiamis 57:38
And as soon as I receive your request, I will respond with more details on how you can be on the show how you can choose a time that works for you and me to meet over zoom. Thanks again for listening. Thanks again for being here. I really appreciate all the support. See you on the next episode.
Intro 57:54
Importantly, we present many podcast 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 at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only
Intro 58:20
and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 58:39
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your 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
Intro 59:02
if you are experiencing a health emergency or think you might be called 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. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.
Intro 59:26
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 A Guide To Understanding Your Stroke Recovery – Bill Gasiamis appeared first on Recovery After Stroke.
1 hr
February 06, 2023 Some Much Needed Hope After Stroke – Tsgoyna Tanzman
Discover the power of a holistic approach to recovery and find hope on your journey as a caregiver or stroke survivor. Tsgoyna shares her expert advice, so don’t miss this opportunity to find hope on your own recovery journey
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Hope After Stroke for Caregivers and Survivors
Highlights:
01:20 Bill’s guest introduction
04:06 Why Tsgoyna Tanzman wrote the book
16:32 What is the Nocebo effect?
20:33 What’s next now that you’re home?
30:43 What is ICU psychosis?
33:25 Preparing for homecoming after hospitalization.
40:06 The book is for caregivers and survivors
49:57 What is the penumbra? What does it mean?
1:03:30 Finding meaning in stroke recovery
1:18:24 The importance of forgiveness and acceptance in stroke recovery.
1:24:46 The stroke got me out of my head.
Tsgoyna Tanzman 0:00
You talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. Right? Why not? If the end goal is to feel better to do that, and we do feel better. There’s also the nocebo effect. I don’t know if you know what that is?
Bill Gasiamis 0:21
I’ve heard about it tell me.
Tsgoyna Tanzman 0:22
Yeah, well, that is where a person can feel worse because what they’re programmed to hear, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things.
Tsgoyna Tanzman 0:46
So the nocebo effect is that limiting belief that we can internalize by a person, a well-respected person whose words are impacting us, or limiting our own ability to achieve.
Intro 1:07
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill’s guest introduction – Tsgoyna Tanzman

Bill Gasiamis 1:20
Hello, and welcome once again to the recovery after stroke podcast. This is episode 236. And my guest today is Tsgoyna Tanzman the author of the highly successful book Hope After Stroke For Caregivers And Survivors: The Holistic Guide To Getting Your Life Back.
Bill Gasiamis 1:37
Her engaging and moving stories have also been featured in 15 Different Chicken Soup for the Soul anthologies. She’s also a contributor to thrive global and writes about mental health for I love recovery cafe, the largest online addiction recovery site, Tsgoyna Tanzman, welcome to the podcast.
Tsgoyna Tanzman 1:59
Thank you. It’s great to be here.
Bill Gasiamis 2:01
My pleasure. It’s great to be awake. Instead of slept through our last appointment like I did.
Tsgoyna Tanzman 2:08
Well, you come by it. Honestly, it’s very early where you are. It’s a whole other day where I am.
Bill Gasiamis 2:14
You know, when you’re having one of those beautiful sleeps, and you get to the other side of it. And then when you wake up you go, Oh my gosh, I think I’ve missed something. And then it was about five emails from you going, are you okay? Is everything okay? Are you there? Where are you? And I thought, oh, no, I’ve done the wrong thing I’ve slept through. It’s the first time I’ve slept through a podcast in 235 podcasts. So you’re the lucky first.
Tsgoyna Tanzman 2:42
Well, I’m so glad I was your first Bill.
Bill Gasiamis 2:47
That’s hilarious. Hey, thank you so much for reaching out and letting me know firstly about your book, which we’re going to talk about, Hope After Stroke. But first, tell me a little bit about you.
Tsgoyna Tanzman 2:58
Yeah, so I’m a speech-language pathologist and a life coach. And I’ve worked with stroke survivors and those with traumatic brain injury for well over 30 years at this point now. And, you know, I live in California. And I’ve had the opportunity though, because I have lived in various places in the country in the United States.
Tsgoyna Tanzman 3:26
I’ve lived in New York, I’ve lived in Florida, I’ve lived in Washington State, and California. And wherever I go I see people who are recovering from stroke, recovering from brain injury, and it doesn’t matter where you live. So many of the same questions came up so many of the same concerns. And most importantly, for me, as a speech-language pathologist, but always working in that coaching sort of aspect of it, because quite honestly, your mindset is the most important thing for recovery.
Why Tsgoyna Tanzman wrote the book Hope After Stroke

Tsgoyna Tanzman 4:06
And I really wrote this book because I wanted people to feel empowered. I wanted them to take ownership, and I wanted them to feel smart. So that’s kind of why I wrote the book. I you know, I guess I had gotten to a place in my life. I was just turning 60. And my mother died at 64. My father died at 68. And there was a part of me that said, What am I leaving behind? What can I really leave behind?
Tsgoyna Tanzman 4:41
I would drive around and I’d see buildings built and I could say, well, those people can say I built that it’s here, right? And writing was a skill of mine. I’ve always been able to write. I’ve had a bunch of funny stories and humorous things published in Chicken Soup for the Soul.
Tsgoyna Tanzman 5:00
But what Like, what can I leave, and I got this download in a meditation really, which was to write the book, and I went, Okay, but I’m writing the book I want to write, and that is the holistic guide to getting your life back. And it’s going to be different. And it’s going to be kind of a challenge to people, maybe in my academic community, that I could utter the word holistic, right, as as if that wasn’t scientific enough. So that’s what I decided and I did.
Bill Gasiamis 5:33
That’s a good one, that’s a great thing to decide. So you became a speech language pathologist? Have you been touched by somebody who’s had a stroke in your family personally, that made you go down that path? Or was it just an area of passion or an area of interest that you followed?
Tsgoyna Tanzman 5:53
Yeah, it was actually, because my grandmother did have a stroke. And it was just at the time, where I was starting college, and really not knowing, you know, what I wanted to major in or what I wanted to do. And my mother said, why don’t you take a look and see what this speech therapist is doing with your grandmother, you’re always been interested in communication, you’ve always been interested in speaking with people.
Tsgoyna Tanzman 6:20
And, you know, from the time I was a little girl, I thought I wanted to work in an orphanage and help little kids. And the more I looked at what this speech therapist was doing with my grandmother, I got curious about the topic, the interest, the field. And the more I studied, the more I liked, and it all sort of snowballed from there.
Bill Gasiamis 6:44
Yeah, a lot of people you hear who have been touched by stroke, as a caregiver or a family member, or somebody who’s not had a stroke, do get really encouraged and enthusiastic about helping other people have been through similar thing.
Bill Gasiamis 6:58
And I’m on the same you, you kind of go through that process. I’ve learned a bit, I know a few things, I could pass that down to the next lot of people who are coming through, unfortunately, and who are feeling like they’re in the wilderness at the moment, and it’s something that I experienced, for sure. And then it was, Who do I reach out to to get that information.
Bill Gasiamis 7:21
So I reached out to wherever I could, but when I started on my journey, it was 2012. And it was, in a time where there wasn’t a lot of online resources, there wasn’t a lot of online communities. And the ones that were there were clunky, and not really well run and weren’t run all the time, because the people that were running them were stroke survivors. So they’re all unwell, and they’re all trying to stay on their feet.
Bill Gasiamis 7:47
And there were some books that you could pick up and read, but there just wasn’t a proliferation of different types of books so that you could have a few different ways to approach this, you had a very clinical one way approach. And I think that a lot of information that I missed out on was getting what I thought was, and where I thought I needed to get it from was from the hospital saying to me, Okay, now that you’re gone home, you’re going to do these things, and it’s like, I got none of that information.
Bill Gasiamis 8:19
It was we fixed you up, we patched it up, go home, see you later at the next appointment. And that was a bit of a shock. When I think about that, and when I hear other stroke survivors talk about that, I know that that’s not their role. Their role is not to educate us about what we’re going to do when we get home. That’s become our responsibility.
Bill Gasiamis 8:41
And it’s a big responsibility, because I’ve got to do that when I’m recovering from stroke and dealing with fatigue and not able to work and not able to walk and move my hand and sometimes not able to talk and it’s ridiculous that it’s my responsibility to teach myself how to get better. After all the things that I need to get better, that are necessary after I go home from the hospital. And it was such a struggle.
Bill Gasiamis 9:15
And that’s what a lot of people complain about right now, a lot of stroke survivors who I’ve talked to on my Instagram page, that’s what they complain about. So we do look for other people to give us guidance. And your book is called Hope After Stroke. We will talk about it in a little while Hope After Stroke For Caregivers and Survivors.
Bill Gasiamis 9:37
The holistic guide to getting your life back, so holistic is one of those words overused by a lot of people, throw it around. I potentially, well, I don’t overuse, but I use it. And for me, holistic is a really important approach to stroke recovery. What does it mean for you to approach recovery in a holistic manner, what does that mean?
Tsgoyna Tanzman 10:03
Yeah, totally means to me that there is a whole human being here. So as a speech therapist working in the hospitals, we have this very convenient way of vivisecting a person, right, the speech therapists worked from the neck up, the occupational therapist worked from the neck to the hips, and the physical therapist worked from the hips down. And of course, we would meet as a group and we would integrate kinds of things.
Tsgoyna Tanzman 10:34
But there was still this overall lack of understanding that we have this whole human being here, right? With a whole life, that they came to us with a whole life, with relationships with spouses, with children, with work environment, with friends, with dreams, with goals, and because it was just so myopic, this approach that we take in the hospital and making sure everybody has stays within their own lane.
Tsgoyna Tanzman 11:14
I think the person behind all of that is the person that suffered. And it was very difficult to integrate all those things. So that’s one aspect of holistic for me, the other aspect of holistic for me, and by the way, I got a lot of pushback from people that said, maybe you don’t want to use that word, holistic, that’s a dicey word to use. That’s like, a scary thing.
Tsgoyna Tanzman 11:43
You know, like your academic, you know, the people in the medical field are gonna, like, maybe not so as all whoo, whoo, and, you know, chickens being swung over your head? Well, you know, even things like acupuncture, which is considered in our country alternative care, well, that’s the standard of care that takes place in China, right, that they do surgeries, they do brain surgeries using acupuncture.
Tsgoyna Tanzman 12:12
And if you speak to people in the stroke community, and you look at a variety of different therapeutic approaches to managing problems, you’re going to see a wide variety. I wanted people to see what other types of approaches, it’s not just like there’s one and done.
Tsgoyna Tanzman 12:37
And if that doesn’t work for you, sorry, good luck, you know, you’re on your own. So holistic to me, meant really being exposed to what other therapeutic approaches are using, what self care tools can we use, that really was a part of the whole process of recovery,
Bill Gasiamis 13:02
For an intelligent, medical community, a really intelligent medical community, they really miss that thing, where they’re not the “be all end all.” I wouldn’t be alive without surgeons, but I would not expect my surgeon to tell me that I shouldn’t be going to see an acupuncturist. It is non invasive. It doesn’t mean you have to swallow anything or do anything, all you’ve got to do is go and attend and lie there.
Bill Gasiamis 13:31
And perhaps just the fact that they put you in a state of calm, safety, relaxed, decreases your blood pressure, decreases your stress hormone, decreases all those things, and maybe the two pins that they put in there, reroute something. And maybe they do that too, why not, even if they don’t reroute something with the two needles that they put in your leg and one in your head, or whatever they do, it doesn’t really matter.
Bill Gasiamis 13:57
What really matters is that when you go there, and you leave some money down, that you leave feeling better and feeling different, even if it’s a placebo, even if it doesn’t work, even if it’s not real. It doesn’t matter. What matters is that I go there and I have the experience.
Bill Gasiamis 14:11
I went to Reiki, I went to acupuncture, I went to massage, I went to you name it, everything that you can possibly imagine after my brain surgery, and before I went to because I wanted to know for myself whether or not it was beneficial or not. And some things were less beneficial than others.
Bill Gasiamis 14:32
So I didn’t go to them anymore. And the person offering that service is potentially somebody who is doing good for other people, and I’m just not one of them. So who am I to judge, but I did get some right if experiences with acupuncture, I really did find that acupuncture did make a difference.
Bill Gasiamis 14:57
And I had this amazing Reiki practitioner who I went to, who I would go and do an hour session with every so often, and I would just walk out there, out of there feeling just like a completely different person, I have no idea what she did, how she did it, I don’t understand Reiki, all I know is that when I walk in there, I feel different to when I leave. And that is just an amazing thing to be able to offer me, this feeling of lightness, and calmness.
Bill Gasiamis 15:32
And without a raising head and things that just, you know, processing better or working better, I still walk out with the deficits that I’m always going to have my entire life and I’m always going to have my left sided numbness, I’m always going to have some balance issues, I’m always going to have tingling in my arms, I’m always going to be sensitive to hot and cold. But when I walk out of Reiki, it all seems to just go away for a little while. And that is such a blessing.
Tsgoyna Tanzman 16:03
It’s a remarkable thing you’ve moved energy in your body. And you’re right, you know, when we can decrease our stress response, we put our body and our cells in the most optimal condition for healing, for optimizing our body systems for creating resilience within our body because our body does want to heal itself, and to recalibrate itself.
What is the Nocebo effect?
Tsgoyna Tanzman 16:32
And the more we can put our body in that ability to do that. It is a wonderful thing. You know, you talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. But wait, why not? If the end goal is to feel better to do that, and we do feel better? There’s also the nocebo effect. I don’t know if you know what that is.
Bill Gasiamis 17:00
I’ve heard about it, tell me.
Tsgoyna Tanzman 17:01
Yeah, well, that is where a person can feel worse, because what they’re programmed to hear. So very often when we have, you know, and like you said, you needed those surgeons to do the surgery. Absolutely. We need our medical profession. Everybody offers a fantastic ability to do what they’re best at.
Tsgoyna Tanzman 17:27
But for example, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things. So the nocebo effect is that limiting belief that we can internalize by a person, a well respected person whose words are impacting us, or limiting our own ability to achieve.
Intro 18:02
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 18:26
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke.
Intro 18:50
They’ll not only help you better understand your condition, and they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 19:08
Yeah, I love your approach. It’s so needed, and there’s not enough of it. And the thing about the medical community, the only thing that I have an issue with is that there’s not enough people who are open to at least if not suggesting alternative therapies as part of a approach to supporting what they’ve done the work that they’ve done, like we’ve done our part now, just go and see if there’s somebody else that can help you with another little part.
Bill Gasiamis 19:46
That’s probably my biggest issue, the lack of willingness to kind of say go and have a look. And they’ll use the excuse that I don’t have any evidence for that or I don’t have the time to look into that etc. Well I think they should they should have time to look into that.
Bill Gasiamis 20:01
And they should have time to be able to gently just make suggestions generally about things that other people have done, that have had some support, that have had some positive experiences and just go, look, it’s not my thing. I don’t do that. You know what I do open heads, I do that type of stuff. But there’s other people that help with other things. Just go and seek them out and see who they are. And just be careful, you don’t find the wrong one and give money to people who promise things and offer things that are certainly not possible, you know.
What’s next now that you’re home?

Tsgoyna Tanzman 20:33
And I think that there’s probably they feel a responsibility that a person does not just go for any kind of crazy thing. But there’s a big gap between dismissing the possibility that there are other things, and that people have gotten better, and that it’s important to explore, I think the biggest challenge is when they say, it’s as good as it gets, right now you’re at six months post-stroke, that’s as good as it gets.
Tsgoyna Tanzman 21:11
And we know that’s not true. We just know that from 1000s and 1000s. of people. And that’s the place where, in their desire to protect people, they can also limit people. And you know, you brought up an interesting thing, Bill, when you talked about, you know, once you let go of the hospital, you’re kind of in this wilderness really.
Tsgoyna Tanzman 21:39
And that is one of the reasons why I wrote this book is like, what happened now that was like life in the hospital? What now that you’re home? And what’s next, now that that level of care, even once you’re home, where maybe you’ve got home health care, people coming in, and therapists coming in? That eventually leaves and then what now? Right? Like, what’s the next phase for you? Because life is therapy, then?
Bill Gasiamis 22:13
Yeah, every single day can be therapy every single day has to be therapy. Because you’ve got a massive mountain to climb, you’ve got a hill, that’s so big, that can be overwhelming. Because if you’re looking at the top of the hill, and you’re trying to work out, what are all the obstacles that aren’t going to come across to get there, you are going to be overwhelmed.
Bill Gasiamis 22:34
And this is the thing about these little offerings, there’s beautiful offerings, that Reiki give that acupuncture, give that all these different things give is I think what they do for me, what they did for me is they give me the next step, even though if it’s not the entire journey, and if that next step is showing me that it is possible to calm my nerves, it is possible to feel great for a little while it is possible to get out of my head.
Bill Gasiamis 23:06
Then that is something that is a great thing to teach me because what I need to do then is go okay, if I’ve done it once, and say I don’t want to do it with a Reiki person again, but how can I do that again, on my own? Where can I do that? It’s going to cost me nothing. Maybe there’s a YouTube video I can download where somebody is going to guide me in a five minute meditation where I can get out of my head. And that’s what those things did for me.
Bill Gasiamis 23:34
They created curiosity about where else, I can go and experience that thing. But do it on my own so that I don’t have to travel an hour to get there an hour to get home. And so that I can become self sufficient at some point. But then also, if I can’t get myself over the line, what I can do is go Hey, Deb, my amazing Reiki practitioner. Can I come and see you? And then she says yes, come and see me. And I’m like, great.
Bill Gasiamis 24:04
Thanks for that you gave me another beautiful gift that hits a head start another path that I can go down and begin my journey again, because it’s not about doing it alone. Clearly, we cannot do this alone you know, we can’t do this alone or we can’t rely sometimes. It’s not sometimes a lot of the times on our loved ones at home because they’ve never been through stroke with us. They’ve got no idea how to do it. And we don’t listen to our loved ones anyway.
Tsgoyna Tanzman 24:37
Right? It’s like being taught to drive from the person that you love most are taught to play golf. Both are not so recommended.
Bill Gasiamis 24:44
It’s not gonna happen. So I want to encourage people about that thing that you said. Where we’re lacking people, the doctors don’t do that they don’t encourage and I’ve spoken about it. I had an amazing interview. For world stroke day, 2022, last year with a guy called Dr. J Mocco. And he was part of the world stroke organization amongst other things. He’s just an amazing guy. He’s a surgeon, he’s a neurologist.
Bill Gasiamis 25:17
He’s a researcher, he does amazing things. And just a couple of days ago, I posted a clip from the video that we did the interview that we did, where he’s just encouraging people that you can recover after one year, two years, three years, you can still get back little bits of movement or something that you lost because of stroke.
Bill Gasiamis 25:41
There’s a lot of reasons why recovery continues to happen and is just going on for about a minute as to why that is the case. So for anyone listening, and watching, you can just go watch episode 222. And listen to that, because that is the most encouraging doctor I’ve ever come across in my life. And I’ve come across some amazing ones. But he’s next level amazing.
Bill Gasiamis 26:04
So hopefully what that does is gives us a bit of a head start into now sort of moving in towards and talking about your book, because I open the first couple of pages and automatically I got stopped. And I’ll tell you where I got stopped. I got stopped when you mentioned the name Peter G. Levine.
Bill Gasiamis 26:25
Can you please tell me how you knew Peter? Because I interviewed Peter for episode 135. And Peter is an amazing guy. And I know that he’s passed away. And I was so shocked. And I couldn’t believe it. Can you tell me a little bit about Peter and how you got to know him.
Tsgoyna Tanzman 26:45
I got to know him through email because I read his book, of course, and found it to be incredible. And I knew that I studied his work I knew where he got his training. And I was really very fascinated to speak with him. So I emailed him, I never met him personally. But we had a very lively back-and-forth email correspondence. And it’s really interesting because I shared something with him.
Tsgoyna Tanzman 27:16
And he was pretty emphatic about making sure that I labeled it Levine’s stages of recovery. And I was happy to do that. I was really, really happy to do that. I felt like we had a great spirit of connection, and professionalism. But that was friendly and useful to further this idea of helping patients.
Tsgoyna Tanzman 27:51
And I too, was utterly shocked to hear on another podcast that he had passed. And quite honestly, I looked to find out any information. And I really couldn’t find any information. He was a phenomenal researcher, very dedicated to the field. And his work is long lasting in this community.
Bill Gasiamis 28:17
Yeah, I think he passed from ALS, or motor neuron disease. And it seemed to be very quick, very rapid. It wasn’t that long after I interviewed him that he passed away and somebody on the video on my YouTube channel where I’ve got the interview with Peter.
Bill Gasiamis 28:38
Somebody said, Do you know that Peter Levine passed away? I was stunned. I didn’t know. So it’s great that we have that common connection I really love that. Now, tell me about the structure of your book. How is your book structured?
Tsgoyna Tanzman 28:59
Well, I decided that I wanted people to have sort of a roadmap so to speak. Because like you said, you get to the hospital right? That’s the first place everybody ends up is in the hospital. And that’s like, Oh, my God, what happened? I mean, I tried to keep it very simple. Because I’m a really simple person. I wanted it very straightforward. And the first question I thought I would have is like, Oh, my God, what happened?
Tsgoyna Tanzman 29:30
And so the first part of the book is literally what happened? It talks about in, you know, as simplistic terms as possible, not because anybody’s dumb, but because anybody that’s trying to read this right now is probably in an overwhelmed state. The good news is that you seem to be in such a readiness period to consume the information because it’s so important and so relevant to you.
Tsgoyna Tanzman 29:59
So The learning curve is like, fantastic, you’re going to absorb that really quickly. I wanted people to have the facility of communication with their practitioners, with any of the hospital personnel so that when they’re throwing all these medical jargon terms at them, that they are really understanding what that is.
Tsgoyna Tanzman 30:20
So that first part is just really kind of generally explaining what happened, you know, the difference between a block and a bleed in terms of a stroke, but also all the acronyms that we just so easily throw around the OT, the ST, the SLP, the physiatrist, that goes like, what are you talking about? Right?
What is ICU psychosis? – Tsgoyna Tanzman
Tsgoyna Tanzman 30:43
So, given all the terms of who are the people on your team, typical things that happen in the hospital, in ICU, what to be on the lookout for in terms of ICU psychosis? I mean, that is a scary thing for people, and sometimes can be just knowing that in advance, somebody’s prepared for that somebody can have a dialogue with their doctor with their nurse.
Bill Gasiamis 31:15
What is that?
Unknown Speaker 31:16
What is ICU psychosis? So very common thing that happens when a patient is in ICU. And it can happen for a couple of reasons. What it looks like, is a person who is physically aggressive, combative, defiant, is ripping out their tube, pulling things out of their nose. And it can happen for a variety of reasons, right? The brain is, in a hypersensitive state, people are terrified. Now, you put them in an ICU thing where they’re separated from any familiar face.
Tsgoyna Tanzman 31:53
If they’re having any kind of speech impairment, they can’t communicate, so they don’t know what’s happening. It’s exacerbating their fear response, their stress response, then you’ve got all the noises from all the machines, the disorientation of time and place. Frequently, there are no windows in an ICU unit. So there is no access to understanding day from night.
Tsgoyna Tanzman 32:23
It’s very confusing all of this, and it’s very upsetting to the family to see a loved one in restraints, that is, you know, like, why are they doing that? Well, they’re trying to keep them from pulling out these tubes, because that person just is not aware of what it is they just feel like things that are annoying them. So it’s a natural response. So helping to understand why that can happen. It can even happen from dehydration, right?
Tsgoyna Tanzman 32:55
That’s causing a urinary tract infection, which is causing a very different, almost stroke like response that’s going on. So that’s one thing that can occur. But then the next part of that is, like you said, once they are, you know, released from the hospital, typically within about seven to 10 days. I don’t know what it’s like, how long were you hospitalized for you went in for a surgical procedure, right?
Preparing for homecoming after hospitalization
Bill Gasiamis 33:25
Yeah, first time I was in hospital for seven days. That was the first bleed, February 2012. Then the second time, march 2012. I was in there for about three or four days. And then I had brain surgery. And then I was in hospital from the 25th of November in 2014 to a couple of days before Christmas.
Bill Gasiamis 33:53
So around the 23rd of December. So the first few days we’re in ICU in acute care, and all that type of thing. And then after that it was in rehabilitation. So it took about after brain surgery about four days to get to the rehabilitation hospital. And then I was there all up. My entire stay in hospital was about a month.
Tsgoyna Tanzman 34:16
Yeah. And everybody’s course is going to be somewhat different. Sometimes they’ll release somebody and they’ll say, Well, you can be treated in an outpatient setting. Sometimes they’ll go to a skilled nursing facility, if they’re not even ready for rehab, but they still have acute nursing concerns.
Tsgoyna Tanzman 34:38
But at some point when people are released from the hospital, that next phase of what’s next is all about the homecoming really like preparing for homecoming one of the things that I would see with patients, you know, we all have this belief there is better than here, wherever I am.
Tsgoyna Tanzman 34:57
There’s got to be a better there right And so people would say, as soon as I get home from the hospital, it’s like, it’s gonna be great, it’s gonna be great. And it’s not all of a sudden, coming home has its own set of challenges, I see you laughing.
Bill Gasiamis 35:15
It sure does. Falling over, not being able to get to the toilet quickly enough, not being able to get up the stairs. Now, they do in Australia, at least do some preliminary work to ensure that your home is safe, the occupational therapists do that, to ensure you’re going to be able to get into your house and into your bed and all that type of thing. So there’s a bit of work that goes into it.
Bill Gasiamis 35:40
But still, nobody tells you about your specific way that you’re going to trip over. So for me, sitting at the couch, eating some breakfast with a plate in my hand, and then deciding like normal to just get up and walk and take the plate to the kitchen. And not realizing that my leg doesn’t work the way that it used to before all of this saga. So I get up and instantly, my leg just collapses and I fall over and I end up on the ground.
Bill Gasiamis 36:12
I think I didn’t break the plate, I think I managed to save the plate. But smashed my hip and smashed my ribs. And then was in pain from the impact of the fall to make matters worse, so yeah, so there’s a little bit of a discussion about what I can expect at home. And then I’m on my own when that happens. So it’s emotional, so it’s scary.
Bill Gasiamis 36:40
And then you don’t want to tell your loved ones that you fell over because then they’re worried because they’re not going to be with you all the time. Because by that stage, my wife had to go back to work. So it’s a real big challenge getting home was the place I wanted to be.
Bill Gasiamis 36:57
And then it was the most at one stage it was the scariest place to be because of the uncertainty of what was to come while I was there. But it was good to be around in familiar surroundings, that was definitely good.
Tsgoyna Tanzman 37:19
Yeah, and it is there’s great things about it, and really some scary and uncertain things about it. And despite going in and doing a home assessment, they’re not going to be able to get every, you know, concern taken care of and every situation taken care of. And, you know, we of course we try as best as possible to prevent a complication like yours. And most of the accidents occur in a bathroom. Those are typically where most of the really bad injuries can occur.
Tsgoyna Tanzman 37:56
A slip or a fall in a bathroom on a hard surface can end in another head injury, which is the last thing we want to have happen. But even just the routines of being at home. And like you mentioned, your wife went back to work right we’ve got to sort of create the ways in which you have support systems in place for you for safety, in the event that you’re home by yourself, even exiting the house, in terms of a fire or all those safety awareness things that we often just don’t think about.
Tsgoyna Tanzman 38:36
And so that was the second part of this book. And you know, even a caregivers guide I really address in that second part of that homecoming you know the caregivers guide to rewarding routines and understanding why a routine for anybody conserves really important brain real estate, like if we do things on an automatic basis, we don’t have to decide and we decide all over again. So creating structure to a day. Facility facilitates growth in other ways.
Tsgoyna Tanzman 39:16
And as you recover, you know better than I there are certain activities that require more cognitive demand, and certain activities that require more physical demand. And, you know, if you have to make a phone call or if you have to manage some aspect of your business, you’re going to need to have padded time on either side to recover and reboot.
Tsgoyna Tanzman 39:42
Because you’re not up to the same level of complicated cognitive function that you were prior to being hospitalized prior to having the surgery as part of your recovery. It doesn’t mean that you can’t get there. But you’ve got to really conserve and utilize your energy in a really appropriate way.
The book is for caregivers and survivors

Bill Gasiamis 40:06
I’m going to make a suggestion, I love the fact that you actually have said that the book is for caregivers and survivors, it really sounds like it’s for caregivers first, because you’re talking about the things that my wife was asking that nobody had answers for, you’re talking about the stuff that I couldn’t help her with.
Bill Gasiamis 40:27
And that she had to just what do we do now? And it’s a whole bunch of what we do now is we’re coming, and we were like, I don’t know, we just had to work it out and guess and make mistakes of the rest of it. And if you’re somebody who’s listening to this, and you’re a stroke survivor, and you’re curious about the book.
Bill Gasiamis 40:49
Check it out as a potential gift that you could give to one of your caregivers, somebody who needs to know what the hell is going on, and how to manage this and tackle this journey, because this is where my wife lacked information, I lacked my own certain types of information. And then my wife left a whole bunch of her own information, and it would have made a big difference, I think if she had somebody guiding her like this in this way, so this the sense that I get from it.
Tsgoyna Tanzman 41:24
It’s so funny, you should mention that too. Because when I was writing this, and I said, the caregivers guide to, you know, the holistic guide for caregivers and survivors. And again, I have a lot of feedback. Well, who is it for? Is it for the caregivers or for the survivor? And I kept saying, it has to be for both. Because even if you live by yourself, now you’re both your caregiver and your survivor. Yeah. But it’s it’s kind of like a dance at the beginning. The caregiver is leading more.
Tsgoyna Tanzman 41:57
But that caregiver eventually, we hope, anyway, that the survivor is taking more and more responsibility, more and more action towards his or her own recovery. But in the beginning, yes, you are relying on a caregiver and in the book, I answer a lot of the most common questions like why is my loved one behaving so erratically? Why don’t they trust me? Why do they sound like they’re drunk? Why are they crying all the time? Why are they… right? You’re laughing. Do these sound familiar?
Bill Gasiamis 42:34
Oh, my gosh, every one of them tick, tick, tick, tick, tick. It’s so ridiculous. I was really angry at one point, and I used to really lash out of my wife, then I would be very emotional and cry a lot. And there’s a lot of what the hell’s going on here. And then I’d be, you know, a different level of ridiculous, and then she would just be trying to work it all out. And she had no idea. No idea.
Bill Gasiamis 42:59
And we found out eventually, but it took sometimes months and years to find out that there is such a thing as the pseudobulbar affect, and some people will laugh uncontrollably at a funeral from now on. Other people will cry when they see the kitty cat trip over or something. And I say, oh my gosh, how do you navigate it?
Bill Gasiamis 43:21
We didn’t we just accepted it as being how I am now. And without explanation. It’s because of the stroke. We don’t know why there isn’t a label. There’s not a word to it, but you know, whatever. And then all of a sudden, six months down the track. Someone goes Oh, yeah, I used to do that. i It’s called this. Oh, I wish I knew earlier, but I’m glad to know now.
Tsgoyna Tanzman 43:47
Yes, absolutely. Like, and so being able to look at those and go okay, all right. There’s this feeling of like such aloneness, such powerlessness that I think people have in not knowing and you can’t possibly know what questions to ask.
Bill Gasiamis 44:08
Yeah. You don’t know, what you don’t know.
Tsgoyna Tanzman 44:10
Yeah, exactly. Like I know when I go to talk to a web designer about doing a web thing. I look there and my mouth is open. Because I don’t even know the questions to ask
Bill Gasiamis 44:21
You know a web designer, you tell me.
Tsgoyna Tanzman 44:24
Like what am I supposed? I don’t even know what I don’t know. Right. And so that’s definitely part of why I put those in there. And you know, I will talk about in the homecoming thing, this is one area I thought that nobody ever addressed. I will say that there’s a lot more holistic stuff coming around now. But I will say that nobody talked about sex. Nobody talked to the people who had had strokes and said anything about sex?
Tsgoyna Tanzman 45:02
Absolutely not. And there are tons. It’s like, okay, you are still a human being, you are going to have sex or want to have sex, or maybe you don’t want to have sex. But if you do want to have sex, you’re probably thinking like, oh my god, is this safe? Am I gonna have a stroke having sex? You know, like, all these questions that nobody ever wanted to address.
Bill Gasiamis 45:27
Let’s talk about sex.
Tsgoyna Tanzman 45:31
Got a chapter in there called Let’s get physical. Yep, I’m talking about sex.
Bill Gasiamis 45:35
Awesome. Absolutely love it. Now, I’ll tell you why I want to talk about sex. Because when I was in my very first appointments with all my doctors, and then they sent me home after the first seven days, of course, the first question, one of the first questions asked was, am I going to be able to have sex, and they told me to refrain from everything. And sex was on the refrain list, because I had a active bleed and a blood vessel that was potentially going to bleed again.
Bill Gasiamis 46:08
And they didn’t know why it bled, and they couldn’t get exactly worked out what the issue was, because there was, the blood clot was interfering with the MRI, so you couldn’t see the cause on the bleed. They said, No sex. So my wife kind of rolled her eyes. And she kind of thought, well, of course, the only thing after a bleed in the brain, he’s going to be asking about whether he can have sex or not, right. Now as a stroke survivor, who knows that that’s a sensitive issue.
Bill Gasiamis 46:43
I haven’t been able to get anybody on the podcast to talk about that. Not with their own experience about the lack of intimacy, after stroke, or the challenges with intimacy, I haven’t been able to get to that point. If anyone’s listening and wants to come on the podcast to talk about that. Please reach out, go to recoveryafterstroke.com/contact, fill out the contact form. Tell me you want to talk about sex. And I’ll have you on the podcast.
Bill Gasiamis 47:12
So it’s kind of still taboo. But I do feel like it’s taboo from a stroke survivors perspective, because maybe it’s embarrassing, or maybe it’s difficult for the caregivers to hear their partner talk about or for their loved one or their wife or husband to hear about them talk about the lack of sex perhaps, or all the things that are associated with it. I’ve never come across anyone who’s spoken about it. So I’m glad that you’re doing that.
Tsgoyna Tanzman 47:47
Yeah. And I’m certainly not the expert in it. But I did reach out to some experts, and got some great information. One of them came from Mitchell Tepper, who is a spinal cord injury survivor. And he gave me really the most information that I thought was really, really useful. That could be applied, but then I did a lot of other research around that. But I think it’s still an area like you say, that really needs to have some frank conversations.
Tsgoyna Tanzman 48:26
Because it is a source of emotional concern for a lot of people, and shame, and embarrassment and frustration. And these are all part of it. And there’s, you know, from both parts from the from each partner has their own different perspective. But they’re all part of your whole emotional mental well being.
Tsgoyna Tanzman 48:53
And that’s why I think it is so important to really at least peel back the layers and begin to have some conversations with your caregivers and ask some of those questions. So good for you for being able to ask that straightforward, right. A lot of people might want to but be afraid to and, you know, one thing I found that was fascinating, the literature was that actually having an orgasm, only elevates your heart rate to about the level of climbing stairs.
Tsgoyna Tanzman 49:28
And I thought, Oh, well, that’s interesting. Right. And there were some other research in there that was funny about sneezing and drinking coffee and, and how those can, you know, potentially what the risk factors are associated with that compared to having sex. And I think in my book, I went okay, well, I think I’d skip coffee, and have sex. That was my takeaway.
What is the penumbra? What does it mean? – Tsgoyna Tanzman
Bill Gasiamis 49:57
I could go without coffee any day and I’ll leave the next part up to you to think about. I love it. So yeah, that’s a great thing that it’s in there. I’ve highlighted a few other things now. Tell me, so part of, I’m going to set it up before I tell you to talk about this. But I’m going to set it up first for the people listening and watching, which is part of the reason why recovery happens. Two, three, a little while later, whatever you want to call it years later.
Bill Gasiamis 50:34
Part of the reason that happens is because of this thing called the penumbra. And it’s not very widely known or spoken about, and I didn’t hear about it from my doctors. I heard about it online somewhere. And then I did some research into it.
Bill Gasiamis 50:51
And I found out what the amazing Penumbra is that what they’re thinking about the preliminaries and the fact that a lot of people won’t be able to access the brain cells in the penumbra until a little while later, until certain conditions change to allow those brain cells and allow those neuronal connections to come back to life.
Bill Gasiamis 51:13
So can you just give people a bit of a guide as to what the Penumbra is? And why it’s important to know? And how that then supports getting some things back some? What do we call it? Some? I don’t know what to call it. You tell them about the penumbra.
Tsgoyna Tanzman 51:35
Some connectivity, right, some connectivity? So like, if you imagine kind of what a bullseye looks like a target, you know, outer rings, and then inner rings. Typically where the stroke has occurred, right, there’s a core that center point, but all surrounding that. And I think of it like this, again, I like to think of analogies when, you know, if you imagine that there’s an accident on the freeway, we call them freeways here, I don’t know what you call them there.
Tsgoyna Tanzman 52:12
So there’s a point where the cars crash, right, that’s like the area of insult. But there might be debris in a wide scattered area around that, that is still problematic. And when the you know, when for the people that are on the freeway, well, traffic comes to a halt, right, everything comes to a halt, and then they might reroute you off of that freeway.
Tsgoyna Tanzman 52:39
So you’re going around it, and that’s kind of like the slow pathways in your brains of, you know, you can get to an endpoint, but it’s going to take longer, and it’s going to be slower. Well, The Penumbra is that area where all the other debris is. And it’s not the actual area of insult, but there’s a lot of toxic almost like a toxic soup, as your body is trying to recover. And until that area really clears.
Tsgoyna Tanzman 53:10
It’s kind of like they’re stunned, the cells are stunned, they’re not dead, but they’re stunned. And it takes a bit of time for that recovery to occur for, you know, the good aspects of inflammation, right, all the things that are trying to help your body recover is still kind of toxic. And it’s that area where the cells are stunned, but they’re not dead.
Tsgoyna Tanzman 53:38
So they’re coming back on line. Again, if we were trying to use an analogy, if you’ve ever dropped your phone in the toilet, I’ve been there. You don’t want to do that. But then you rush to put it in the rice to let it dry up, right? And the connectivities. Like, oh, it’s starting to glimmer, it’s starting to show up a little bit. It requires a period of time for the cells in your brain to get back on line.
Tsgoyna Tanzman 54:08
And so there is recovery, there is neurogenesis, new neurons are building their grow growing. But it does take time for that to happen. So yes, recovery can take place, we typically see recovery, the most amount of spontaneous recovery, we see is in that first three month period, it slows down a little bit to six months. And that’s where very often the doctors will say, six months, it’s as good as it gets. And that’s just not true. It’s just not true.
Bill Gasiamis 54:47
I love the analogy of the bullseye because it’s like the dartboard you know, it’s everyone’s going for the center. They’re trying to hit the center so it’s often on the dartboard, it’s where the most dots are, it’s where the most holes are from the darts that have hit there, right. So it’s where the most damage is, but then as you go to the next ring out, there’s less and less damage as you continue to go out in the rings.
Bill Gasiamis 55:14
And the fact that there’s less and less damage there means that the healing happens. And there’s more intact neurons and connections there because there’s less damage there. And as a result of that, those areas come back online quicker, they make new connections, they reroute better, they do a whole bunch of things quicker.
Bill Gasiamis 55:33
And that’s where people get those little 1% 2% 3% gains, that they didn’t realize they could get down the track, or one, two or three years down the track, and that the doctors don’t really pay attention to but those little one and 2% gains, if you pay attention to those, and you add them up over a year, or over 18 months, or every two years, they actually are a lot.
Bill Gasiamis 55:57
And then you notice how far you’ve come rather than how far you have to go. If you’re noticing how far you’ve come, then you’re going to feel better about that in your head in your mindset. And then you’re going to be more encouraged about continuing the journey
Tsgoyna Tanzman 56:12
100% and this is where that life coaching comes in. Right? Wherever you put your focus and your attention that expands right, you can look at how far you have to go, or how far you’ve come, right. When you look at how far you have to go, it seems overwhelming seems impossible seems like you want to get up, we give up.
Tsgoyna Tanzman 56:35
But when you look at how far you’ve come, how much progress you’ve made, that thought of making progress creates that hopeful or curious or determined condition, which then stimulates the various actions that come from determination. Versus when you feel overwhelmed, we tend to spin not do anything give up. But when we feel determined, because we’re seeing and believing that we’ve made progress, then we continue to make progress.
Tsgoyna Tanzman 57:10
And connections. It’s so interesting that you said that because we found out that the connections between neurons are more important than the number of neurons that have been damaged. But it’s that connection. And I think it’s a great metaphor for for recovery all over the place.
Tsgoyna Tanzman 57:28
Because connections outside in human connection, isolation is probably the worst thing that can happen. And it’s a very common thing that can happen because of stroke, particularly if their communication deficits. But we can be isolated. And we need to connect not only with other stroke survivors, loved ones, our connections mean more than anything
Bill Gasiamis 57:57
I wrote about that recently in my book. So and by the way, I love the amount of overlap between your book and my book. My book is still not out yet. But I finished the last chapter just about a few days ago. And the chapter is about building a supportive community. And I talked about in that community, it’s about really bringing people into that community. It’s not, I use the analogy.
Bill Gasiamis 58:23
It’s not like a suburb, or a locality where you buy a place or you rent a place and you go there, and you don’t get to choose who’s around you. And nor should you. When you go there. Everyone who is there is there and you have to work out who they are and you have to navigate that. But a recovery community is people that you choose to bring in. And they only come in if they’re serving your recovery.
Bill Gasiamis 58:46
And I’m not saying that you don’t talk to people who don’t serve your recovery. Of course you do. You don’t separate yourself from the people that you’ve been around, but you bring in people that are going to be part of your recovery team.
Bill Gasiamis 58:58
They can be doctors, occupational therapists, acupuncturists, they could be Reiki healers, they could be a whole bunch of people that you go to, or that are around you, that are motivating you that are helping you that are bringing you a bowl of soup that are doing everything that is about just having an amazing experience when you’re around them.
Bill Gasiamis 59:25
And it may not be specifically stroke-related, but you just feel good when you’re around them. I know that I chose to hang out and spend the majority of my time with people who made me feel like that I was uplifted when I was there. So they were part of my stroke community recovery community even though they didn’t know that they were part of it.
Tsgoyna Tanzman 59:47
100% and I really make a point of saying in there, you know, PPO of positive people only, you’ve you’ve got to kind of connect with the people that have your vision, that share your vision that share your optimism for recovery, and that are of that same genre, but like, it’s very important.
Tsgoyna Tanzman 1:00:13
What you put into your mind what you put into your body, what you put into your energy field, it is the people that you get to lovingly be with or to lovingly dismiss, you know, like, that doesn’t work for you, you know, and that’s fine. You’ve got to find that support community that furthers your support.
Bill Gasiamis 1:00:38
It seems to be what you talk about in Chapter 13. Right? Which is help is not a four-letter word. Learning how, who, and when to ask.
Tsgoyna Tanzman 1:00:48
Yeah, and that’s for caregivers, as well as for survivors, it really is.
Bill Gasiamis 1:00:58
Caregivers, especially, who often go out of their way to make sure that they’re doing everything for the survivor and neglecting themselves.
Tsgoyna Tanzman 1:01:09
And there’s a huge risk for burnout, and premature, you know, problems, physical problems that happen from caregiving.
Bill Gasiamis 1:01:20
Death, often the caregivers, passed before the person that they’re caring for, they’re doing such a great job on them, that they’re not looking after themselves.
Tsgoyna Tanzman 1:01:31
Right. And I’ve always said, you know, you must fill your own tank first before you become that caregiver. And people really struggle with this, like, how do I do that, I don’t have the time, I can’t do that. And it really becomes a mindset shift to, of finding a way to care for themselves, so that they can be a better caregiver, because you are a human being, we are all only human beings.
Tsgoyna Tanzman 1:02:00
And, we’re all subject to being overtired, over-hungry, over-frustrated, right? We have basic human needs. And we must be able to care for ourselves, if we have any hope of trying to care for another person.
Bill Gasiamis 1:02:21
it’s definitely put on your mask first, in the aeroplane, before put on the mask for somebody else, you can’t help anybody if you’re not around to help them. It’s simple as that. Now, one of the things that are really difficult for some people to do after stroke, and because stroke is so varied in the way that it impacts people, and some people have we’ll call it a minor impact from stroke, which I don’t believe there’s such a thing when the brain is impacted, there’s no such thing as a minor.
Bill Gasiamis 1:02:56
But then deficits wise, some people are impacted a lot more dramatically. And, it’s difficult to get them thinking in a way that’s going to support their recovery. So they might be unable to get up and walk around, they may be unable to go back to work, there might be a whole bunch of issues that makes their identity feel completely different to what it was before they started down the stroke journey.
Finding meaning in stroke recovery
Bill Gasiamis 1:03:30
And we often talk about finding meaning, you know, what’s the point of all of this, you know, where’s the meaning in this? You know, what does it mean? And you can understand somebody who’s been seriously impacted by stroke and has a lot of deficits going well, there is a meaning it doesn’t mean anything and going into a negative spin. But I feel like there is a way to even in that situation, find meaning.
Bill Gasiamis 1:03:57
And for me, my version of meaning kind of came from this. I’ve been down this road now for five years, I’ve learned some things I’m going to share them in hopes that somebody who’s going through this is not going to have to struggle the way that I did. And as a result of that. What that did is it allowed the meaning of all the stuff that I’ve been through to emerge and the purpose of my life to emerge. And I had no idea that that was happening.
Bill Gasiamis 1:04:35
And I’ve just spoken about this in my book as well. Because that is part of my hope for people is that they are going to be able to somewhere find meaning. And in order to do that the first thing that you have to do I think you tell me what you feel, I think is you have to do something for somebody else without wanting anything in return. And keep doing that as often as your resources allow you to.
Bill Gasiamis 1:05:08
And then out of nowhere one day, meaning and purpose will emerge. And for me, my meaning is pretty clear. Now, it’s about stroke recovery. It’s about a podcast, it’s about other people and all that type of thing. But it’s become my purpose in life.
Bill Gasiamis 1:05:25
My purpose is to have the biggest database of interviews with stroke survivors and other people who help stroke survivors so that nobody ever has to go through this journey alone ever again. And we, you and all the other people that I’ve had on the podcast are helping me fulfill that. So tell me about your thoughts on meaning and how to help guide people towards meaning and purpose.
Tsgoyna Tanzman 1:05:56
Yeah, I think everybody, as you say, finds their own way to meaning. And I think your discovery of what that was, came from all of your circumstance, not your circumstances, but all of the changes that you made that naturally and spontaneously evolved for you. I’ve seen people so there were I worked with a man who had had a spontaneous carotid artery dissection.
Tsgoyna Tanzman 1:06:31
It was on New Year’s Day. He had spent the morning surfing with his buddies, his wife, and one of his four daughters was on the way to college his eldest daughter that was on the way to college. And he went to go help his mother move a very heavy piece of furniture. And he had this sudden onset of illness that manifested like throwing up and dizziness, and nobody really knew what it was. And he didn’t get any medical help.
Tsgoyna Tanzman 1:07:08
By the time I met this man, he’d already been hospitalized, maybe three weeks. He had the most extreme as far and I’ve seen a lot of stroke patients. He had no usable language whatsoever. He was paralyzed on one side. The sounds that he uttered didn’t even sound like English sounds, they literally sounded alien. But he would look at you. And one gesture he could do, he would put his hand to his heart, and he would close his eyes.
Tsgoyna Tanzman 1:07:48
And you knew that it was a sign of gratitude that he was experiencing well, what became this man’s purpose in life, he’s now 10 years post stroke. He went through lots and lots of therapy, I will tell you one short story about it that was like his immediate purpose in life. And you talk about feeling good for a period of time, there was a program called Life Rolls On. I don’t know if you’ve ever heard of it.
Tsgoyna Tanzman 1:08:19
It was a program that was created by a young surfer who had been surfing he was going he was pro, I believe. And he was in a terrible surfing accident, became quadriplegic. And after he became quadriplegic, his purpose in life was that people would surf no matter what, in any condition, he was going to surf again, and he was going to teach other people to surf, no matter what the condition was. Well, I found out about this program.
Tsgoyna Tanzman 1:08:53
And ironically, you know, like I said, this man’s injury came subsequent to the him surfing that day on New Year’s Day. And we were having a particularly challenging session. I could see he was getting super frustrated. And I remember saying to him, do you want to look at this thing about surfing and in his eyes would like he could understand. He could understand some of the time not all the time.
Tsgoyna Tanzman 1:09:19
Well, anyway, we looked at this program, and I went, do you think you want to try this? And he got really, really excited. I said, Well, okay, we have this small problem. We have to get this part of your skull that is now in your stomach. Because, you know, when I don’t know if you ever went through that, but like, did they put part of your skull in your stomach?
Bill Gasiamis 1:09:42
I have had people who I’ve interviewed who told me that and yeah, it was amazing to hear that. In order to relieve the pressure of the brain, they remove the part of the skull, they store it in the stomach for a period of time and then they take it out of the well it’s actually in the belly fat. And then they remove and put it back. I haven’t heard that. But it’s lovely to hear that thing it’s just amazing.
Tsgoyna Tanzman 1:10:11
So we said, well, this would be really great. We got to get clearance from your doctor. And oh yeah, by the way, we’ve got to get that bone flat back on your head, if you want to go in the water. Right? And it was not very far away. Well talk about having a purpose. Right? By the time that we went to do this, we cleared it with his doctor, he did get his bone flat back on. It required so many people to, imagine getting a half-paralyzed body into a wetsuit.
Tsgoyna Tanzman 1:10:42
That’s no easy feat. Anyway, he got on his surfboard, there were three people in the water with him, getting him to surf, getting him and just joy and elation from having achieved that in the short run. So how does this bring me to purpose and meaning, right? Well, he wasn’t able to go back to work, he was a very smart engineer, he ended up becoming very interested in photography.
Tsgoyna Tanzman 1:11:16
And for him, the purpose and meaning of his life came from photographing his family and his growing family. And that’s where he created his significance and contribution. And everybody’s going to have a different way. A different means another person who had been an architect who could no longer speak and was so frustrated by that started doing paintings, he ended up selling paintings. For a real estate person who was looking for things to stage.
Tsgoyna Tanzman 1:11:59
You know, to stage homes exactly. So I never know what a person’s purpose and meaning is. But I think you touched on something important, I can say that the most successful thrivers, as I call them, have some things in common. And one of those things in common is that they found something bigger than themselves. Something that was more important, whether they called it God, higher power, Allah, Jesus, YeHoVaH, it didn’t matter what it was.
Tsgoyna Tanzman 1:12:37
Even those that were total atheists that believed their doctors were a higher power, finding something that was beyond themselves was important. I think that’s when you’re speaking to talking about doing something for somebody else. It’s believing that there is a purpose beyond you. Right? That was one of them. Finding a sense of humor, finding humor in things, in the most ridiculous things was absolutely a factor in being a thriver.
Tsgoyna Tanzman 1:13:15
Those were definitely two factors. I always call them like my, you know, non-scientific, purely anecdotal features, because we’re always looking at, like, what makes person a successful thriver. And we can connect the dots backwards. And those are two of the most important things.
Bill Gasiamis 1:13:36
I agree. The thing about purpose is it’s not something that you’re going to work out in your head, it’s a heart led thing. You know, you hear about these people who say, Oh, you know, you have to find your purpose. And then they tell you, you’ve got to think about it and you got to work at it, you’re not going to it’s not meant to happen like that you don’t plan for your purpose to come forward.
Bill Gasiamis 1:14:00
But that classic example of taking photos for the family of the growing family for that patient, that guy, he’s doing that for them, as much as he’s doing it for him. He’s doing that for them. He’s taking photos, capturing moments, and giving that as a legacy, something that people can reflect on and look back on, in many years to come and say, Our dad did that or our granddad did that or whoever it was that did that.
Bill Gasiamis 1:14:30
And that’s the thing about it is it’s a reciprocal thing you do for other people you get something back from it, as if I don’t get anything out of interviewing stroke survivors, it’s my therapy session every single episode. And I don’t get to pay for it. You know, people come to me and they tell me their story and we share and I get tons out of what they share. My wife does not want to sit through another 235 conversations about me and my stroke journey.
Bill Gasiamis 1:15:03
I mean, it’s in our lives all day every day. She just doesn’t want to hear it anymore. It’s not her job, right? So that’s what I get about it, that’s the gift that they give me. And then I’m paying that forward to the people who are going to receive that down the track who need that information, who are desperate and do that Google search. And they’re either going to do the Google search and go, I found a podcast, or Oh, my God, I found a book, how about this book, or I found a podcast about a book and it’s maybe you and me. And that’s the thing, right?
Bill Gasiamis 1:15:36
I get a lot out of something about following my path and my purpose, and hopefully the person on the other end is getting something out of it. And my purpose wasn’t to do this at the beginning. At the beginning, my purpose was to get back on my feet. So purpose changes and shifts, right. And it’s broad. It’s not just one thing, and there’s, oh, well, this is my only purpose, I’m not going to do anything else.
Bill Gasiamis 1:16:03
No, there’s many different purposes involved in that purpose. If I’m doing this and I’m happy, then my family life is better. If I’m doing this and I’m healing, then my recovery is better. That means that my wife is impacted better, that means that my children are impacted better, that means that my mom and dad are impacted better.
Bill Gasiamis 1:16:21
So if we’re going around, if we’re going towards a purpose, it’s not just so you know, it’s not a selfish thing. Everybody benefits around you, if you’re following your purpose, or trying to discover your purpose.
Tsgoyna Tanzman 1:16:40
100%, and that is so true what I say about my patients, too, is that I learn more from them, right? I get from them. In working with those people, I learned more about resilience than I could ever learn. So you’re 100%, right that as you fulfill your purpose, it affects the next person and the next person, the next person, everybody benefits from you taking care of yourself.
Bill Gasiamis 1:17:15
Yeah. And I’m going to move on from purpose in a moment, but you could tell it’s a passion of mine, to live it to talk it to encourage people to go down there. The thing about purpose is, it could be as simple as even if your purpose is just to be a great example, to somebody else about how you go about tackling such a dramatic, life-changing situation.
Bill Gasiamis 1:17:40
So that in case one of your loved ones has to go through that in the future, when you’re no longer around, they’ve got some kind of a formula, or some kind of an example that they can follow to help them overcome whatever it is that they might go through.
Bill Gasiamis 1:17:56
It’s better than being the version of a stroke survivor, who just gives up throws the hand in the air and leaves that as the example as to how to go about dealing with a serious issue from a disease or, or a condition like stroke. This has been a beautiful conversation, by the way as we continue to chat about one more thing about the book.
The importance of forgiveness and acceptance in stroke recovery
Bill Gasiamis 1:18:24
And come to wrap this up. Chapter 29. And there seems to be a lot of chapters, maybe you can tell me about that in a minute. Chapter 29 is about forgiveness and acceptance. Tell me a little bit about your thoughts on forgiveness and acceptance. Who are we forgiving? What are we accepting?
Tsgoyna Tanzman 1:18:44
Yeah. Well, there’s a lot about forgiveness with regard to stroke, right? Where we start to sometimes were angry at I know, I worked with a man who was angry at the physician who caused the stroke, right when he went in for a surgical procedure. And he stroked out his thought was the surgeon cause this, right? That can certainly happen when you’re having a brain surgery and something goes a muck.
Tsgoyna Tanzman 1:19:17
You know, I don’t know if you’ve ever read the book, Gray Matters. Dr. Levy, brilliant neurosurgeon who worked in the brain and I really looked at his work too, because it was so important. When I first went to hear him speak. He described himself as being the kind of guy that wanted to get warm and fuzzy with his patients as long as they were anesthetized behind a scalpel.
Tsgoyna Tanzman 1:19:46
That was as close as he wanted to get. And he would perform these very high risk surgeries of removing aneurysms and all that kind of thing, and occasionally, he had a bad outcome. And his was all about praying with patients before but forgiveness is there’s so much a patient I’ve heard of, I shouldn’t have lived this way, I should have done something different.
Tsgoyna Tanzman 1:20:16
There’s forgiveness of themself for lifestyle, there’s forgiveness of other people, but when I heard the words taken apart, forgive, as for give, how can you be for giving yourself love? Can you be for giving yourself? Appreciation?
Bill Gasiamis 1:20:42
Wow.
Tsgoyna Tanzman 1:20:45
I mean, that just put it in a context for me, that still gives me the goosebumps. And understanding, you know, they say that, anger or harboring resentment towards somebody is like drinking poison and hoping the other person will die.
Tsgoyna Tanzman 1:21:03
And there is a degree of peace that comes, especially when we are for giving ourself a new beginning, a new start, the acceptance is a challenge, it doesn’t mean we like it doesn’t mean anybody’s going to choose yep, I’m gonna choose to have a stroke, that’s a great thing. You know, I didn’t put that on my to do list. And I didn’t want that to happen.
Tsgoyna Tanzman 1:21:37
And here this situation is when we come to terms and everybody has to do it in their own time, and in their own way. But when there’s the acceptance of this is where I am right now, doesn’t mean that I’ll be there a year from now or five years from now. But where I am, and to literally except, to move all the way to love, appreciate, what can I appreciate about myself today, today, just as I am. That’s really powerful. Because that’s where we move into that mindset.
Tsgoyna Tanzman 1:22:29
When we resist that, when we absolutely don’t accept it, and we resist it, our resistance grows greater, our stress level goes greater. And any ability for us to really embrace our body’s natural resilience and facility to improve is stifled is dampened. And that is where we do have some power. And it may require working with a professional that can help you get to that place. I’m not saying that it’s an easy place to get to.
Tsgoyna Tanzman 1:23:12
But even the self help that you can get from putting your thoughts down on paper and looking at them out of your head is a place to evaluate them in a better way. Recognizing that any of those thoughts are thoughts that there are people that have had strokes that may have a different like a person like you right?
Tsgoyna Tanzman 1:23:44
At this stage of your recovery again, not that you would choose it. But where has this come in your life? You have found a purpose that is so powerful for you. That had you not had a stroke you wouldn’t be where you are today.
The stroke got me out of my head
Bill Gasiamis 1:24:00
No way. Yeah, I would not be and I hate to think what kind of person I would have been because the path I was going to wasn’t a fun one. I was cranky, I was working too many hours. I had too many negative thoughts. I didn’t believe in myself. I didn’t think that anything was possible. I had never done any personal development. I thought that I had all the answers and nobody else knew anything. I was a great guy to be around.
Bill Gasiamis 1:24:37
But I was my own worst enemy like so terribly bad to myself. But you wouldn’t guess it by being around me or seeing me or hearing me interact with other people. I was just the hardest person on myself and I wasn’t an encouraging of myself. And what the stroke did for me it is it got me out of my head. So I had a really overthinking over negative head and my stroke meant that the head switched off for a few months.
Bill Gasiamis 1:25:12
And that was what allowed my heart to come forward and express itself. And then it allowed me to hone into my heart’s desires. And then to follow them, because my head wasn’t telling me not to. And then that made me find those amazing people and make them part of my community. And then they made me follow and fall into personal development courses, and discover what I’m capable of.
Bill Gasiamis 1:25:47
And then, of course, overcoming the not being able to walk again, and learning how to walk again, was a massive, a massive personal development opportunity that I did on my own, but with obviously, the help of all the therapists, and it just took my growth, my personal growth to the next level, so it just taught me things that it was impossible to learn any other way. And I’m glad that it came at 37 and not 57, because at least the 37.
Bill Gasiamis 1:26:30
It was well overdue, I was well overdue from being in that position of stuck in a stuck mindset. And I needed to move into a growth mindset. And that’s kind of what has continued to happen. I didn’t know that I was in a growth mindset, by the way, and I didn’t know that it was in a stuck mindset. I know that now, because I’ve read a book about it, you know. But it’s what happened, and I can reflect on it really lovely now.
Bill Gasiamis 1:27:03
Yeah, I would hate to think where I would have been, I think I still would have been successful, I still think I would have been a good family man and I would have had all of that stuff. But I feel like there would have been a lot more, potentially a lot more tension, a lot more stress, a lot more unnecessary kind of stuff that doesn’t support happiness, I think is where I would have been. But you wouldn’t know it if you met me on the street.
Tsgoyna Tanzman 1:27:39
Yeah, it’s remarkable to see who you became, what was available to you. What creativity, what wisdom, what genius would come from this, and you’re not the only person I’ve ever heard say, my stroke turned out to be a blessing. You know, I hear that time after time.
Tsgoyna Tanzman 1:28:05
And that’s why it is just so remarkable to me to listen to each person’s story about how and what they learned about themselves, how badass they learn, they became, how resilient. Like really, it’s like, how loved they were so many of those things have occurred to people that I just continued to marvel at each individual story is so remarkable.
Bill Gasiamis 1:28:36
Yeah. Thank you so much for reaching out being on the podcast.
Tsgoyna Tanzman 1:28:40
Oh, such a pleasure Bill, like amazing. And thank you too, for sharing your journey, but also this beautiful new purpose that you have developed over these years and just keeps expanding. And I think I can find somebody that help you talk about sex.
Bill Gasiamis 1:29:00
Please, I want to talk about sex. Get them on, let me know.
Tsgoyna Tanzman 1:29:03
Okay. Take care, thank you.
Bill Gasiamis 1:29:06
Thanks so much. Thanks for joining us on today’s episode. I hope you enjoyed that particular conversation as much as I did, it was really lovely to hear the approach that somebody in the position of Tsgoyna has taken and the benefits that her patients and clients have received over the years because of her amazing way to go about supporting people on the road to recovery.
Bill Gasiamis 1:29:39
Now to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes If you’d like to support this podcast, the best way to do it the way that I would love you to do it the way that I would really really, really appreciate get you to do it is to go and leave a five-star review on your particular podcast app.
Bill Gasiamis 1:30:06
Whether it’s the Spotify app or the Apple podcasts app or any other app that you listen to your podcasts, that would be fantastic. If you are watching on YouTube, please leave a comment below the video, just two words is fine. Anything to make the algorithm push the episode to more people, way more people need to listen to this episode. And the algorithm won’t do that unless there is interaction with the episode.
Bill Gasiamis 1:30:34
So if you’re on YouTube, please hit the like button. Subscribe. And definitely leave a comment. I answer all comments, whether you have questions, whatever it is, just please let me know what you think about the episode I would love to hear from you. Sharing the show with family and friends on social media will make it possible for people who may need this type of content as well to find it easier.
Bill Gasiamis 1:30:58
And that’s going to make a massive difference in their recovery. It really does. This is exactly what people who are recovering from stroke need just like you. Hopefully you can share this and let other stroke survivors know about it. Now, if you are a stroke survivor with a story to share about your experience, just come and join me on the show. The interviews are not scripted, you don’t have to plan for them.
Bill Gasiamis 1:31:21
All you need to do to qualify as best stroke survivor you need to be a caregiver for a stroke survivor or you need to be somebody who works to help stroke survivors overcome whatever it is that they’re challenged with. So go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive your request, I’ll respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:31:54
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 or 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 at 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 1:32:24
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 1:32:48
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 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:33:13
Medical information changes constantly. While we aim to provide current quality information and our content. We did 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 Much Needed Hope After Stroke – Tsgoyna Tanzman appeared first on Recovery After Stroke.
1 hr 36 min
January 30, 2023 “Stroke Abroad: A 21-Year-Old’s Journey of Survival and Recovery” Kristin Taylor
In this episode of our podcast, we talk to Kristin Taylor who survived two strokes while traveling abroad. Kristin shares her journey of determination and resilience, as she recounts her experiences and the challenges faced. From navigating the healthcare system overseas to their emotional recovery, this interview provides a unique and powerful insight into the world of stroke survival and recovery.
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Highlights:
00:46 Introduction
02:39 The Really Bad Migraines
06:56 Having A Stroke Abroad
12:09 Kristin Taylor Had An Ischemic Stroke
15:26 Vision Loss Caused By Anti-Migraine Medication
20:00 Just Another Bloody Tourist
26:56 Pushing The Limits To Get Out Of The Hospital
31:24 Coming Home
38:13 You’re A Lot Stronger Than You Think
46:46 Not “Looking” Like You’ve Had A Stroke
58:05 Achieving The “Impossible”
1:03:45 Post-Stroke And Training Diet
Transcription:
Kristin Taylor 0:00
One quote that I live by, like after this all happened is if it doesn’t challenge you, it won’t change you. And I think it’s just taught me you’re so much stronger than your mind and you just gotta keep pushing and don’t ever ever give up like it’s okay to have shitty days and stuff like that, but just pull yourself out of that. And it’s taught me to don’t let other people predict what your future is gonna look like because they’re wrong.
Intro 0:34
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Introduction – Kristin Taylor

Bill Gasiamis 0:46
Hello, and welcome back to the recovery after stroke podcast. This is episode 235 And my guest today is Kristin Taylor, who was only 21 when she experienced two ischemic strokes on the Amsterdam leg of a European trip in 2014.
Bill Gasiamis 1:03
Her tenacity and rebellious spirit has proven to be very beneficial as she continues to overcome the limitations of her body proving her doubters wrong along the way. Kristin Taylor, welcome to the podcast.
Kristin Taylor 1:15
Thank you.
Bill Gasiamis 1:17
Hey, fellow Aussie from Wollongong, I love Wollongong.
Kristin Taylor 1:21
Yep, yep.
Bill Gasiamis 1:24
Beautiful part of the world. Thanks for being on the show. Tell me a little bit about what happened to you.
Kristin Taylor 1:29
So I was actually 21 at the time traveling during Europe, with my friends. And previously to these trips, I had been a really bad migraine sufferer went to a number of neurologists, and no one could really pinpoint why they were happening and stuff like that.
Kristin Taylor 1:56
I used to always get cluster migraines where I’d have three days off work sometimes I’d get the whole lose my vision, everything like that and get a really bad headache and then throw up and everything so yeah, and leading up to these trip but I was I don’t know you can say I was a little bit stressed.
Kristin Taylor 2:18
I was a little bit of a stress head. And I had a few migraines were now we look back at it and think they could have been TIAs. They were really bad where I completely would lose my vision. I actually had pins and needles down my face one time, but just was just like whatever.
Kristin Taylor’s Really Bad Migraines
Kristin Taylor 2:39
No one can solve these it’s just hereditary. I just get migraines, I have to get used to it. They prescribe this medicine, it was called Maxalt. And I used to take that it never used to help Panadol never used to help Nurofen I ended up I couldn’t take anything with codeine in it.
Kristin Taylor 3:00
That was kind of the only thing that helped. But then the neurologists figured out that what was happening, I was taking the codeine, when I’d get a migraine, it would knock me out, take away the pain. But then the next day, I would get another migraine so that I would give my body more codeine.
Kristin Taylor 3:23
So yeah, had quite a few bad ones before I ran overseas. And then I had a little bit of a turn when we we’re in London visiting one of my friends, family members, and I just said something doesn’t feel right. I almost had like vertigo, I just was off balance, I was feeling sick, I was just really, really exhausted.
Kristin Taylor 3:51
And that lasted probably about three days. And then anyway, we’re traveling, we’re in Amsterdam. And I used to also get migraines when I’d be hungover. Obviously with all the artificial stuff in drinks and everything like that.
Kristin Taylor 4:11
So the day before I had the strokes, I yeah had a really bad migraine was throwing up and everything like that. But then my friends obviously being overseas wanted to go out. And we went out for the night and I just said to them, I just don’t feel right.
Kristin Taylor 4:29
Like I’ve still got a really bad headache. I still feel really sick and everything like that. And then one of my friends she just said come on, let’s go we’ll go back to the apartment. And yeah, and then we were back at the apartment together and she just looked at me and she said are you okay? And I said yeah, I feel a little bit funny. I’m gonna get up gonna go to the toilet.
Kristin Taylor 4:54
And for some reason she followed me. And then when I came out of the toilet, I just said to her, I feel like I’m gonna faint. And then I obviously quickly laid down on the floor. And she lifted my legs up and everything. And I just looked at her and I said, I don’t want to scare you but all down on my right side of my body, I’ve just got these really, really intense pins and needles.
Kristin Taylor 5:20
Like, you know, when your arm goes to sleep, and like, you just can’t shake the pins and needles and they hurt, like, so this was happening, you just would have drawn a line down my body. And the whole right side was just gone, just pins and needles.
Kristin Taylor 5:39
And anyway, she got me up, we sat on the lounge. And I think without us even noticing, I stopped using, obviously my right side. So the two clots that I had the first one, they were both on the left side of the brain, which affected my right side.
Kristin Taylor 5:39
And then I started to get really bad headache. And then I started to feel really sick. So almost similar to how I used to get my migraines and everything, but obviously had the pins and needles and everything, which was different.
Kristin Taylor 5:58
So she just like kept monitoring hand everything. And then my other friends came back from their night out. And I think everyone was just kind of trying to play it cool. And I’m very, I don’t know, if I have to go to hospitals, something seriously is wrong and that scares me.
Kristin Taylor 6:38
So I avoid, avoid, avoid, which I did in the situation. We were just all hanging around in the lounge room. And my friends were just saying to me, you know, like, if you want to go to hospital, just let us know. We’ll call an ambulance, all of that stuff.
Having A Stroke Abroad
Kristin Taylor 6:56
So we just waited probably about two hours. And I was obviously starting to panic a little bit because the pins and needles weren’t going away. I just kept wanting to vomit. My pain in my head was just getting excruciating. And then yeah, we made the call to call an ambulance, obviously being in Amsterdam.
Kristin Taylor 7:22
They were like, young girls probably drink spiking, drugs, whatever. So they weren’t really that nice when they picked us up. So got me in an ambulance. And then we’re in emergency got sent for a CT scan. And then as I was in the hospital, I started to become really disorientated.
Kristin Taylor 7:51
I was getting confused, I started to lose my speech. And that in itself was so frustrating, like I can’t explain that to anyone like they were asking me what day it was. And I would say something, but then this, like gibberish would just come out and it was so so frustrating for me.
Kristin Taylor 8:13
And then a nurse is still we’re just kind of being really horrible. And my best friend at the time, she just looked at the nurse and she said, Are you sure my friends not having a stroke? I’m like, because she had watched her dad prior to coming overseas, watched her dad had a stroke.
Kristin Taylor 8:34
And the nurse just looked at my friends and said, you girls need to calm down. Your friend is not having a stroke, just sit down and be quiet. And then anyway, so they left us down in emergency that if they did think it was drink spiking or whatever, they didn’t give me any fluids.
Kristin Taylor 8:54
They didn’t want me on a drip. They didn’t like give me any painkillers, nothing. And then eventually, I think it was like close to 10 hours later, they put me up in the ward. And the head neurologist, he came and did the rounds the next day, so I was still in the same clothes from the night before I hadn’t had any fluids hadn’t had any water like nothing.
Kristin Taylor 9:11
And then the had neurologist came around and first thing he did, he got me to sit up in the bed. And he went to shake my hand and without even noticing I gave him my left hand instead of my right. And he just looked at me and he said, why didn’t you give me your right hand, I said oh l don’t know, it just didn’t work.
Kristin Taylor 9:51
And he said okay. And then he goes alright, close your eyes. I was like alright, and then he goes, lift your left arm up. lifted my left arm up fine, and then he said, lift your right arm up. And then he repeated himself. He’s like, lift your right arm up.
Kristin Taylor 10:10
I’m like I can’t. And then he said, Okay, he’s like, stand up with me and said, I can’t. Sorry, he helped me stand up. And then he’s like, okay, he’s like, how’s your head feeling on like, excruciating. It’s really, really killing me. And he’s like, and then he did the sensation test where they run that horrible thing under your foot, and everything like that, which was horrible.
Kristin Taylor 10:41
And I just explained to him the sensation that I was having down the right side of my body. And I said, it’s horrible. Like, I just want to get rid of these pins and needles. And he said, Okay. And then he just looked at his team. And he said, it’s almost 24 hours later, why has she still not gone for an MRI yet?
Kristin Taylor 10:55
So then anyway, panic, obviously, my friends, they left the hospital, they went home to shower, and everything like that, I went to get my MRI, which was for somebody, you just can’t explain it for somebody that can’t actually move their right side of their body, and had these pins and needles just laying still for that amount of time.
Kristin Taylor 11:22
And having that anxiety of like, What the hell is going on? It was just horrible. It was like I was in that MRI machine, for like hours, and just couldn’t wait for it to be over. And then the nurses wheeled me back into the room. And within, it was about an hour they had neurologist came back and he said, Where are your friends? I said they’re just off showering, they’ll be back soon.
Kristin Taylor 11:51
He said, Okay, we’ll just wait until they get back. So obviously, being on my own, I was just like something seriously wrong. And I was just like, oh my gosh, and then my friends came back and God bless them, they had come up with a complete plan of what we were going to do.
Kristin Taylor Had An Ischemic Stroke

Kristin Taylor 12:09
They’re like, when you’re better we’re gonna go here, we’re just gonna chill it, like my family friends house in London, like trying to be all positive. And I’m just like, No, something’s seriously wrong, because the neurologist wouldn’t talk to me on my own. And then anyway, he came back when they were there. And he just said, Look, I’m extremely sorry, you have had an ischemic stroke, you’ve got a massive clot.
Kristin Taylor 12:42
And I kind of just was in shock. And I had one friend, she just walked out of the room, I had another one on the end of the bed, just crying. And then I had the other two just like what the hell and I just burst into tears. And the head neurologist just said, like, we need to take this extremely seriously. He’s like, I know your friends are here with you.
Kristin Taylor 13:08
But we need to get in contact with immediate family now and we need to get someone over here. So they kind of just said, I’ll give you a minute. And then we’ll come back and we’ll have a chat and everything. So yeah, we were all obviously blubbering messes. I was just everything was running through my head just going oh my gosh, like, I’m like this for the rest of my life.
Kristin Taylor 13:36
I didn’t even know what to think. And there was a point there that I was like, I just, I’m gonna get emotional. But like with the pins and needles and everything. I thought, if they’re there for the rest of my life, I don’t even want to be here. Like, that’s no way of living. Like it was just horrible. And then yeah, anyway, my friend obviously contacted my mom, and was just like, everything’s okay. But Kristin just had a stroke and my mum was just like.
Bill Gasiamis 14:14
Everything’s not okay.
Kristin Taylor 14:16
Yeah, yeah. She’s like, what do you mean she’s had a stroke? And she just explained the situation and everything. And then obviously, that day, my family got things rolling and everything. The hospital was really good. The head neurologist spoke to my mom and just said, like, you know, we need someone you can’t both come over here because we need someone in Sydney, organizing everything organizing all appointments for when I’d get back and everything like that.
Kristin Taylor 14:51
And then, anyway, while she was in the air coming over, they ended up moving me into a private room on my own. It was a completely different story, the nurses and the doctors and everything that were really harsh prior to that they all were fussing, they were like, We’re so sorry what happened like, and I was disgusted with like the care that they gave me prior to knowing what was wrong and they even came around to like shower me to wheel me into the like shower.
Vision Loss Caused By Anti-Migraine Medication
Kristin Taylor 15:26
And I just said, No, I don’t want you to touch me. Like I’d prefer if my friends can shower me and everything like that. And then yeah, when I got moved into the private room, the next day, I thought I was having another migraine attack. The symptoms that would usually occur with my migraines, they were all out of whack. So I would usually lose my vision first, I would get the headache, and then I would vomit.
Kristin Taylor 16:01
Where we this time around, I felt sick first and went to throw up and as I went to throw up, I got the headache like really bad shooting pain on the left side of my head again. And then quite a lot of my vision went and it wasn’t. Usually when I’d get my migraines it would be almost like pixelated, where these time, the vision on my right side was just gone.
Kristin Taylor 16:31
And I was like, okay, that’s not normal. And then my friend said she’s got medication that she usually takes when she has these migraine attacks. Can we go get it? And the doctor said, yeah, go get it, we’ll have a look at it. Anyway, when I got back, the doctors had a look at that. They took one look at it. And they said no, she should have never ever been prescribed these because these actually my type of migraines obviously, the arteries are tightening and that’s why I would lose the vision.
Kristin Taylor 17:03
Where apparently this medication would do the same thing. So it was making it worse. Yeah, yeah, so that was interesting. And so no wonder why it never did anything because it was actually making it worse. Anyway, they left us alone for a bit. And actually my sister, she was traveling in Southeast Asia at the time, and she called me because she hadn’t heard from me for two days.
Kristin Taylor 17:35
And she knew that something was wrong. And when I spoke to her, I was obviously going through these having a little bit of a turn. Didn’t even remember talking to her. And at that point, she was like, I need to get over there like, and anyway, the head neurologist came back eight hours later and he said, How are you feeling? I said, my head is killing me.
Kristin Taylor 18:02
And he said, Okay, how’s your vision? And I said, No my vision’s still gone. And he said, Okay, it’s been eight hours now we’ll send you for another MRI. So and by this point, this is two days in hospitals. So I was already on the heavy blood thinners, getting the injections like everything. And yeah, they sent me for another MRI.
Kristin Taylor 18:30
And then in between that my mom had arrived. And my friends could go back to the hotel and chill and everything and gosh the poor thing she was in all sorts she was just an emotional wreck, and she was jetlag, she was so tired and everything like that. But yeah, when she got there, they head neurologist came around and said, Look, were really, really sorry. You’ve actually had another stroke.
Bill Gasiamis 19:02
That time.
Kristin Taylor 19:04
Yeah, so if I didn’t have the second one. My vision would have been fine so I would have Yeah, I had obviously lost like my mobility on my right side and everything like that. I lost the sensation on my right side, but my vision up until that second one was completely fine. So you can imagine my mom was just like, how did you miss these?
Kristin Taylor 19:31
Like, how could you not and the head neurologist was just like, you know, she’s young. She’s 21 like she wasn’t showing like the typical signs like she could still you know everyone says if you’re testing someone for having a stroke, get them to poke their tongue. Yeah, get them to do these. I could still do that. So I’m like that’s not always the case.
Just Another Bloody Tourist
Bill Gasiamis 19:57
And you’re a tourist, you’re in a country where it’s known for people traveling to go and get high and stoned and all that kind of stuff, you know, the bloody tourist who’s turned up sick to the hospital, everything kind of fits the picture of another bloody tourist, you know, and it’s really hard for them because they’ve got to separate the tourists, in their mindset from the sick patient and always assuming that it’s a stroke is probably the wrong thing to do.
Bill Gasiamis 20:33
But never assuming it’s a stroke is also the wrong thing to do. And, you know, that’s the thing, like, and maybe they were on the 14th hour of their shift, and God knows what was going wrong. You just became unlucky with the way it all turned out.
Bill Gasiamis 20:54
And now, what’s really interesting to me is how vividly you are telling the story and how well you’re sharing like, every single detail, it doesn’t feel like it just happened yesterday, it seems like it’s just so fresh. I know it was in 2014. What’s it like for you, nine years later, to be sharing the story in this way?
Kristin Taylor 21:24
I don’t know, it’s yeah, I’m like, I was really nervous about coming on here. Because I didn’t know how I would feel. But then, like, I love telling my story, because I love inspiring other people, especially young people. And, yeah, it does honestly just feel like yesterday. But I think, I’m happy to share my story, just because I really, really want people to know that they’re not alone.
Kristin Taylor 22:06
And you’re not I think the hardest part for me was the head neurologist, he just, I don’t know, my family are very, very positive. And we try and make light out of a crappy situation. And you can say, this is a pretty crappy situation. So like, I obviously was learning how to eat again, and everything like that.
Kristin Taylor 22:36
I went to OT once my sister had got over there. And my mom just said, can you go to OT with her? And it was the first OT session. And they said, Okay, pick up a pen and write your name. And I didn’t even think of that. So I was kind of, I guess I was more fascinated with what was going on with my body than really concentrating on what was actually happening.
Bill Gasiamis 23:08
What you couldn’t do? I like that though. That’s really interesting to be fascinated about what’s happening to your body, rather than worried about what’s not happening. I think that’s a real good shift in your mindset.
Kristin Taylor 23:22
Yeah. And the more doctors said things to me, the more it pushed me to go against what they said, if that makes sense. So the first thing they said to me, all right, what do you want to do with your writing? Do you want to train your left side? Or do you want to retrain your right side? And I just looked at them and I’m like, Are you kidding? I’m like, I’m just going to retrain my right side.
Kristin Taylor 23:48
I’m not going to like learn how to use the left hand now like, and everything and same thing, like the head neurologist came around, and we were having a good laugh. I was I think we were testing myself, we were eating peas, or something. And like, my hand just had a mind of its own. Obviously, I lost the vision. So I’ve lost my hand eye coordination.
Kristin Taylor 24:15
I’m sitting in the hospital bed with a spoonful of peas, and literally, peas have gone everywhere and it just so happen we’re having a good laugh about these. And then the head neurologist comes in and sits down, and we’re just like, oh, you know, like making a good joke, she just “pead” all over the floor and everything. And then he was just like, you know, this is a really serious situation like, you’d be like this for the rest of your life.
Kristin Taylor 24:52
And he goes, what do you do for a job? And at the time, I was working with children with autism, quite a high behavior, quite demanding on the body and everything like that. And he said, yeah, you’re not going to go back to that when you go back to Sydney, you’re going to have to change jobs, you’ll probably be walking with a walking frame or a walking stick and all of that, and I just looked at him and I said, how do I get out of hospital? When can I get out? And he said, Oh, let’s just take one day at a time. And I said, no, like, what will it take for me to be able to leave here?
Intro 25:32
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 25:57
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Kristin Taylor 26:35
Because I was just so off him then once he said that I was just like stuff you I love my job like and I’m not giving that up like so anyway, you said once you can walk for a minute, then we can think about getting you out of hospital. And I just said okay, all right, no worries.
Pushing The Limits To Get Out Of The Hospital

Kristin Taylor 26:56
So anyway, that day, I just said to my mom, I was like getting in the wheelchair, get me downstairs, take me outside. I do not want to be in this hospital. And I won’t come back until they need me for OT or Physio, anything like that. So we just every day they take me down in the wheelchair we just go for walks around Amsterdam with me and the wheelchair and everything like that.
Kristin Taylor 27:23
And then yeah, the day came where they were just like, Okay, you have to walk for a minute. And people on here will think like a minute is nothing. And I was just Yeah, I pushed myself so hard. I used to my arm would just sit up like this. And I just dragged my right leg and I walked for that minute nonstop. And I was so so sick. I was just throwing up so much after it like my head was pounding and that just did me for the day.
Kristin Taylor 27:58
But after that, they would like to say that was two weeks. And they will okay. As long as you’ve got all year they obviously checked if we have like cardiologists booked in if we add neurologist appointments or booked in back in Sydney, we have to get the health insurance to organize all of the flight home.
Kristin Taylor 28:18
The nurse, I have a nurse with me to fly all the way home to come all the way to the front door with me. And everything. And yeah, they let us out. So we by this time, my sister as well. She flew back continued on her holiday. But then my mom and I we were just at a hotel near the hospital for I think it was an extra week just while they organize like the nurses and everything like that.
Bill Gasiamis 28:46
Where were your friends in the meantime, because they’re on holiday.
Kristin Taylor 28:50
Yeah, so they were really they were in two worlds. And they were just obviously trying to be good friends. And they like we don’t want to step and my mom just looked at them and said you know what you need to continue your holiday. It’s not now that she needs you. It’s further down the track that she’ll need you. So they continued on. They went to sail Croatia and all of that stuff. And then I just told them obviously when I got home but yeah.
Bill Gasiamis 29:23
Wow. That would have been hard. Was that hard for you? You’re laying in hospital. They’re leaving going to the next leg of the trip?
Kristin Taylor 29:32
Yeah, yeah, extremely hard, but as well, I think I was just extremely although things happen the way that they did. I was extremely grateful that I wasn’t on the next part of the trip because the next part of the trip was sail Croatia, knowing me I probably would have been hung over I probably would have put myself in a room on the boat and things could have ended up a lot worse.
Kristin Taylor 29:57
I mean after things did come through, and we knew what was going on the doctors and the nurses obviously had a complete turnaround and they were really good. The only thing that we didn’t the pain threshold, apparently in Amsterdam is completely different. So the whole time, they had morphine on standby for me. And I just kept saying, like, pain is at a ten.
Kristin Taylor 30:24
And they’re like, Okay, here’s more Panadol. And it wasn’t until like the I think it was like the ninth day in the hospital and these lovely nurse he came in and he said, do you understand our pain threshold? Because like, I’m reading your body and thinking, Nah, there’s no way this girl is a 10. And he’s just like, one is actually our worst with pain. So he’s like, we’ve had more pain on standby for you this whole time. And you’ve just been taking Panadol I’m like, Oh my gosh.
Bill Gasiamis 31:03
And 10 is the worst for us in Australia. 10 is the worst pain. And you’re saying and they’re going one. Oh, my God.
Kristin Taylor 31:14
Yeah, with just looking at me, you would have been able to say I was just yeah, I’ve never ever had pain like that in my life.
Coming Home After A Stroke Abroad
Bill Gasiamis 31:24
That’s crazy. What’s it like landing back home after you’ve been on such a dramatic? life-threatening, you know, problematic situation so far away from home with nobody around you until they finally got there? Like, what’s it like coming home?
Kristin Taylor 31:43
That still makes me tear-up. That was such an emotional like, even like before going home, the nurse obviously had to come to the hotel, and she had to meet me and she had to test everything out and explain everything that needed to happen on the flight and go through all of that. And even then the day she came to see me, she goes, You need to calm down.
Kristin Taylor 32:13
She’s like, your heart rate is through the roof. And I was like, I know, I’m like, I just want to get home and because everybody was so drained, like with the time difference, like trying to call Dad and get him to organize everything. Like was just yeah, so the nurse, she actually came all the way home with us. So she even it was just such a big emotional experience because we pulled up in the driveway.
Kristin Taylor 32:47
And dad was obviously there and even the nurse like she walked me up to the front door and we were just all crying and I was like I was ruined. I was so like, just being on the plane. And everything was just touching back down in Australia and just getting home to like Sydney and getting home to like my own, like house was just, a breath of fresh air and just like oh my gosh, like I can’t believe what has just happened.
Kristin Taylor 33:25
Like my mom, she will still memories pop up on Facebook of like the day we’re all coming home and she’s just, she’s always like, Oh my gosh, I could still cry like, and we often have like little moments where we just we’ll both cry and everything like that. But it was just an amazing feeling getting back home and because it changed everyone like even my dad was working at the time and even mom kind of took turns.
Kristin Taylor 33:55
So my dad who very rarely took time off-work was yeah, he took I think it was about a month off and he took the responsibility of pretty much being my carer taking me to all my rehab appointments. We’d go do the shop together that was part of my rehab learning to walk with a trolley and everything like that. And just getting out around in those surroundings and stuff which was amazing. My family was just great.
Kristin Taylor 33:55
What was the underlying cause of the blood clots. Did they work that out?
Kristin Taylor 34:38
So they ended up in a neurologist back in Sydney, he said the contraceptive pill and then the type of migraines that I used to get so obviously are from the contraceptive pill. I was getting migrains which Touchwood since I’ve had a stroke and I have not touched any form of contraception. I have not even had one migraine. And now it’s really funny because you talk to people, you talk to females, there’s obviously enough studies now. And I’ve had, I think, to people I’ve known have gone to a neurologist and said, I’m getting migraines, first thing they do take you off the pill.
Bill Gasiamis 35:25
I know the back of the box that has all the side effects and all that says stroke in one of them. And in the other one, you know, there’s a whole bunch of other symptoms, right? Like, of what can happen if you take the contraceptive pill, when you decided to go on birth control, which is a really smart decision for a lot of people to do, right?
Bill Gasiamis 35:55
You think you’re being proactive and you’re doing it? Were you aware of the risk of stroke? And was there no moment where you went? I never had migraines. Before then I started taking this thing. And now I have migraines. Did you connect the dots at all? Was there any idea? Did you have any awareness of any of the side effects?
Kristin Taylor 35:55
No. And the frustrating part, too. I’m so frustrated at myself, because I didn’t even really need to be on it when I was on it. But because I had obviously found one that worked with my body. I was just like, I’m not even going to go off it. But originally when I was younger, and did when I first started on it, I was just yeah, the stuff that it did to my body. I just wished it was enough to go not look at what these can do to your body, that’s it.
Kristin Taylor 36:21
Yeah, but I did. Like I had the neurologist in Sydney. And he was extremely funny because I talked they always say bring all the medications you take and everything like that. And he wouldn’t even touch the pillbox he was just like was I think a bit funny about that. So that wasn’t even we just did a food diary. I eliminated like, I love chocolate. And I eliminated chocolate for a year we found out that was a trigger. I couldn’t have tomatoes couldn’t have processed food, all that stuff like alcohol, all those triggers. But no one ever said anything about the contraceptive pill.
Bill Gasiamis 37:44
Ridiculous. I love the fact that you’re 21. And you’ve handed him a contraceptive pill. And he’s unfortunately, gone and done the dad thing and he’s probably thinking of why he’s doing all that stuff and he’s gonna kind of talk about it. I’ll just ignore it pretend it never happened. He’s probably got a daughter your age and thinking could just as easily be my daughter. He was freaking out. It didn’t know what to do.
Kristin Taylor 38:08
Yeah 100%.
You’re A Lot Stronger Than You Think

Bill Gasiamis 38:13
Love absolutely love it. So you’ve overcome those initial couple of years? What did they teach you about yourself? It would have been hard and you would have had to gone through as a 21 year old. Some of the hardest days of your life, you know, you’re just fresh out of school just starting to explore the world spread your wings sort of discovering what’s out there, then you get stuck in this situation. What does it teach you about yourself
Kristin Taylor 38:46
Like a prime example, the head neurologists, you’re gonna be like this for the rest of your life. I had a physio that said I was inspired by my sister who used to do bodybuilding and base it off you with all your issues like you’ll never be able to do that. So straightaway I was like no that’s it. Like once I finished my rehab everything I thought I was Yeah, into the gym and I’m yeah, I’m coming up to like my third season of competing in bodybuilding comp I guess it’s yeah, just told me you’re yeah, you’re a lot stronger than what you think. And if you believe you can overcome it you 100% can and you should never ever, ever doubt yourself.
Bill Gasiamis 39:43
Yeah, I agree. So what are you dealing with now? It’s been nine years have the vision returned. Do you have deficits on that right side still? What What’s that situation like?
Kristin Taylor 39:58
That So you can literally draw a line down the middle of my body and my right side, the way I explain it, because as soon as I say numb, everyone’s like, what you can’t feel me pinching you or you can’t feel this. And I was like, no I can. So when you go to the dentist and you get a numbing needle, and you can still kind of feel your face, but it’s that weird sensation.
Kristin Taylor 40:28
So I’ve got that all down on the right side of my body. And obviously, like some points on my right side are a little hypersensitive to others. So I do need to be mindful, like with hot water, or anything like that, that can sometimes catch me off guard because on my left hand, it won’t feel too bad. But then on my right, it may. I’ve got so division on my right side, never ever came back.
Kristin Taylor 40:55
So it’s like the way to explain it. It’s the top quarter of my eye on the right side, and then a little bit of the bottom quarter. And then, obviously, like with my right hand, they always say like your fine motor is a lot harder than your gross motor. So my right hand of turn seizes up or it twitches a lot. And I find that happens quite a lot when I’m really really stressed.
Kristin Taylor 41:32
Apart from that, everything is pretty good. I’m fitter than I’ve ever been. I hated the gym prior to the strokes like previous two strokes. And now I just love it, I find if I don’t go to the gym, my body will not shut down. But I can kind of see the right side, but I’m struggling a little bit. It also, I have primary lymphedema in my lower legs, which is really a swelling and my lymphatic channel doesn’t work properly.
Kristin Taylor 42:10
And I actually with the strokes, I set it off in my right arm as well, because I was obviously doing everything I could to try and get like the sensation back in my arm. I was getting acupuncture, I started doing boxing, so rehab for for coordination, and that triggered, unfortunately, this swelling in that arm. But yeah, apart from that, I think we just pushed really, really hard because one person said to me, when we got back to Sydney.
Kristin Taylor 42:44
Whatever you’re left with, after 12 months, that’s probably going to be permanent. So that 12 months is crucial. And then another family friend who had experienced a stroke, he just said, look at me. He’s like, push yourself because if you don’t use it, you’ll lose it. Like it’ll stop.
Bill Gasiamis 43:06
Not everything’s permanent. There’s a lot of reasons why people have deficits. Sometimes it’s a learned deficit, where you know, remember you said at the beginning, you said, do you want to just learn to write with your left hand, that whole entire situation, if you had gone yeah, let’s learn with my left hand, you may never have learned to write with your right hand again.
Bill Gasiamis 43:30
And that’s a learned experience, that’s you expecting your hand not to work and it doesn’t, whereas other people will have the connection completely gone from that part of the brain. So that’s why they can’t write it’s a very different version of why they can’t write and it may not get better, it may retrain to some extent, but it may therefore be easier for them to just swap hands and learn how to write with the other hand.
Bill Gasiamis 44:01
The reason I asked you about what you’re left with is because I know you go to the gym, and it’s something that I’ve avoided because my left side, you describe my left side, when you described your right side, it’s exactly the same. And my left side fatigues so quickly, that if I’m pushing a barbell above my head, it feels unsafe on my left side, because my right eye wants to keep going forever and my left sides going were done after two or three reps.
Bill Gasiamis 44:33
So because it’s so uncomfortable, I’ve always got to overthink it. I just got sick of I said stuff that I’m not doing that and of course I want to benchpress or anything like that. Now I’ll use you know machines that are you know, electronic sort of assisted machines, the ones that are not free weights. And I noticed in on Instagram on your very lot most recent posts, you’ve got a strap around your right wrist holding the row bar. Is that because you can’t grasp it properly? Why do you have the strap?
Kristin Taylor 45:13
I use straps because I feel my wrist on this side just isn’t as strong. And it will often I don’t know whether it’s because of my vision too, as well. I do have to be really careful with my right arm because it will often it will often flare out. And I have to be really mindful of that or get someone to help me at the gym. But I mean, I’ve Yeah, absolutely where myself with that.
Kristin Taylor 45:48
I’ve worked very, very closely with a personal trainer, after my rehab and everything like that, even last year, I was working with another personal trainer who’s become a best friend. And we used to do three sessions a week, and yeah, and I’m always I need to be in front of a mirror. I’m very specific with how I train.
Bill Gasiamis 46:12
And look at your form. Yeah, is that why?
Kristin Taylor 46:15
Yeah, cuz I’ve got the vision missing. If I’m doing any weights or anything, I can’t see my right arm as soon as it goes out of there. So I’m always I need a mirror in front of me. Yeah, I’m very things on like, my right side, like lunges and everything like that I’m very off balance. And that becomes frustrating. But that’s something that’s a goal of mine this year to kind of push her that and yeah, get on top of that.
Not “Looking” Like You’ve Had A Stroke

Bill Gasiamis 46:46
I imagine like, when you look at your Insta, it’s very inspiring, by the way, the fact that you’ve overcome all of that stuff, you’re competing in bodybuilding competitions, you can tell the amount of work that you’ve put in, but and I look at those pictures and I’m like, that’s one healthy looking person.
Bill Gasiamis 47:07
Is there situations where people look at you, and then you are healthy, there’s no doubt about it, and look at you and then go, like, stroke? What do you mean, like, you look fine? Do you get that you get that part of the conversation where people just can’t wrap their heads around? How somebody that looks like you is in the shape that you are, can be stroke affected?
Kristin Taylor 47:35
Yeah and you get I think the biggest question is like, what do you mean a stroke like an actual, like full blown stroke or like, just a, like a TIA or? And I’m like, No, I have photos to prove that two massive clots in my brain. Like I still like even doctors. Doctors are fascinated by it, which was quite frustrating when I was younger, because you were like a guinea pig and everyone would just get so excited to be working with this like person.
Kristin Taylor 48:05
But like I’ll still get doctors that will make a joke and be like, What have you done in your like previous life to like, get handed these cards and everything but yeah, everybody I think as soon as you say stroke victim, they expect someone with a droopy face like everything like that. They just Yeah, yeah, so no, it does. Yeah, definitely shocks people.
Bill Gasiamis 48:32
They can’t connect the dots, some in some of the outfits you’re you’re getting ready to go out with your friends or whatever you’re probably at a party. Nobody at a party would be able to tell that you’re living with the right side feeling the way that it feels nobody would have a clue whatsoever.
Bill Gasiamis 48:52
It’s the invisible part of stroke. That’s the sometimes frustrating and challenging for people. Do you like sometimes get frustrated about the fact that you might be having a bad day but you don’t look like somebody who’s unwell or gone through?
Kristin Taylor 49:11
I think that’s the hardest thing or I’m very confident very social and everything like that. But then I think that was the hardest part of the stroke people not being able to see what is going on and I do get I can get quite awkward in a social atmosphere, especially with the vision so until I know people and feel comfortable like if we’re going to a restaurant or something I will say can I just sit at the end of the table where the wall is?
Kristin Taylor 49:50
Because otherwise I feel rude because I’m constantly turning my head to talk to people if a way that comes up on my right side I get really awkward if I haven’t been able to see them. Where that can be quite frustrating. But yeah, in the beginning, that was I had a lot of anxiety around that. And I actually, to the point just pulled myself back, I thought I was ready to go out and socialize.
Kristin Taylor 50:16
And I just had a few bad experiences where I’ve just put myself back into my shell went home and cried and everything my family was like, it’s okay, pull yourself together, like, tomorrow’s a new day. And yeah, but now it’s just we make jokes about it. Like I’ve once I get to know people, I tell them I’m like, you know, you can pull faces on my right side. I don’t even see you when you’re there and everything like that. But yeah, it can become quite frustrating sometimes. But yeah, especially if you run into things if you don’t know they’re there. But I mean, if we don’t laugh, we cry, right?
Bill Gasiamis 50:56
Running into things would be an interesting situation. I have my vision, I still run into things a lot, because sometimes I just can’t tell. I can’t judge the distance between, say, my shoulder and the doorframe. And if I’ve had a big day, and I’m tired, I’ll bw closer to the doorframe than I thought I was and a whack. And it’s like, oh, well, there’s a doorframe again. So totally appreciate that. I know what that what that’s like, with the vision thing. Does that mean that you’re unable to drive? Have you been able to get your license as a result of vision loss?
Kristin Taylor 51:36
No. So what I think you have to be in a certain vision field, and I’m okay, because I’ve still got quite a lot. It’s just that where I felt was more and it was the complete right side. And I wouldn’t be able to, so very, very grateful for that.
Bill Gasiamis 51:58
Yeah. It’s been nine years, those friends that were on that trip with you. Do you still see them? Do you keep in touch?
Kristin Taylor 52:08
The one that was there pretty much the whole time. I’m still extremely close with her. But unfortunately, I Yeah. outgrew? I think the other ones. Yeah.
Bill Gasiamis 52:21
Yeah. Well, that happens. Those types of trips. Tend to yeah, definitely be that way. Anyway, it’s a good reason to get together with those people and travel because everyone wants to travel so often, people outgrow each other. That’s pretty cool. But it’s so great to have this other friend that you’re still there after all that time. How important is that relationship?
Kristin Taylor 52:48
Yeah, yeah. No, very, very important. Yeah. And she’s like, She’s literally my number one supporter. She’s, my first bodybuilding comp was up in Queensland. She was there, but she’s just amazing. And yeah, obviously, it’s very special bond there.
Bill Gasiamis 53:09
Yeah. How did you go in the competition? Did you finish where you want it? Or does it even matter?
Kristin Taylor 53:16
Yeah, no, I did. Yeah, I was extremely. I think my first one I came 2nd, 3rd, and 5th and then the one that I did last year, I brought home my gold medals got three golds. One 2nd. And then another show. I got three 2nds. One, 4th. So this year, keep pushing and hopefully bring those golds home again.
Bill Gasiamis 53:42
Wow, that’s pretty cool. And what are they judging? are they judging? What do they judge at bodybuilding competitions?
Kristin Taylor 53:52
Oh, they judge everything. They judge your overall physique, they judge symmetry which is obviously a big thing for me because obviously my right side years ago, was completely different to my left side, even like my butt cheek on my right side would used to sit down like that. So and we had to do a lot of one sided things to get that to catch up to my left side that they go off everything they go up your bikini, your stage performance, your, everything whole shebang.
Bill Gasiamis 54:31
I’m very curious to understand what you said about the symmetry because my left is my weakest arm anyway. But it now does look, you know, people paying attention. It does look different to my right arm. So does my left leg. They kind of a bit leaner. I suppose. That’s the only way to describe it. How hard was it to get your right side to be symmetrical or as close to your other side as possible, because that’s a big job. Because it’s the side, that’s the weakest. And you have to work it the most.
Kristin Taylor 55:15
Again, just that initial year, we just worked extremely, extremely hard, and just really, really focused on that. But now to the point, I almost concentrate so much on my right side. I’m doing a lot better than what I think to the point I ignore, my left side, which is my good side by coach last year used to always say, Stop concentrating on your right side so much is actually doing so well. And you’re not focusing, you’re starting to neglect the left side. So yeah, yeah, no, I guess like everyone used to say, like muscle memory. It’s there. You’ve just got to use it. You’ve got to activate it. And yeah, if you use all those muscles will reconnects themselves.
Bill Gasiamis 56:10
I love that because I’ve had a lot of conversations with people on podcasts. Now, we’ve never really spoken about that before. We’ve never really touched on the asymmetry of one side to the other, except in one of the interviews that I did with a powerlifting stroke survivor, an amazing lady.
Bill Gasiamis 56:37
I’m going to bring it up now. So for people listening and watching, I’m going to recoveryafterstroke.com/episodes. All the episodes are listed from one to 233 at the moment. This is going to be Episode 235, I think. And the person who I interviewed, it’s Kelly Studebaker, and she has hemiplegia so her I think it might be her right side doesn’t work so much. So she does powerlifting with one side of her body. So one side of her body is completely jacked. It’s massive, like double the size of your arms.
Bill Gasiamis 57:29
And the other side is just, you know, like normal regular stroke affected, not jacked. And she had a ruptured arteriovenous malformation or brain hemorrhage. And I think she was only aged 11. So in her adult life is when she decided to become a powerlifter. And it was again, she wasn’t meant to be doing powerlifting. And nobody ever sees you as a possibility of being a powerlifter, and she’s just gone are stuffed, I’m going to be a powerlifter.
Bill Gasiamis 57:38
And she is and the photo that I’ve got on the episode thumbnail. You just see she’s lifting a weight, it’s on an angle, and you just say the ripped shoulder, bicep and tricep and it’s just it’s such a powerful image. I love it. I love sharing that story of Kelly. She was on episode 106. Man I get really excited when I hear people like yourself, overcome the trauma, overcome all of the hard stuff and then achieve something that you’re not meant to achieve.
Achieving The “Impossible”
Bill Gasiamis 58:51
And Kelly is one of those people and so every other person I’ve interviewed on the podcast, I mean, they’re the same. And that’s that’s what I love about getting people on the podcasts because they were you guys do for me is you prove over and over and over again to people who are early on in this journey, that we can overcome stuff we can get better.
Bill Gasiamis 59:13
We can do a lot with our deficits. And we can overcome a lot of the deficits even though they don’t leave us you know, we can leave them behind. So it’s just really cool. Yeah, as you could tell, I get really excited. I just love it. So what happened with work? Are you still employed in the same role you’re in or has it changed? Have you moved on what’s going on with that now?
Kristin Taylor 59:44
Originally I went back. We just obviously slowly introduced me back into work and then yeah, I ended up working with the really challenging kids again and the ones that would always have tantrums and stuff like that like, but in saying that my patience, and my understanding for the children with autism was just out of this world, because I was like I could understand their frustration, like with writing, and everything like that.
Kristin Taylor 1:00:22
And it just made me love that job so much more. But I ended up, I did leave that job. But I was in that for 12 years working at the same school for seven years, then went on and did program managing for before and after school care. And now I manage a respite home for people with disabilities that come and stay for short term accommodation.
Kristin Taylor 1:00:50
And I just, I just love it and love helping people. And yeah, and quite a few of my clients, you know, they have like, they’ve got other things going on, but a few of them have had strokes. So we sit down, and we have a chat. And yeah, talk about all that. And it’s just, it’s nice to be able to do that profession and be able to connect with people as well, and just have that understanding.
Bill Gasiamis 1:01:20
You really relate to them in a way that non stroke survivor can’t relate to, and we never want them to right? You really understand exactly what it is. They’re going through. And they would feel a lot better being in an environment with somebody who understands them to that extent, because most people don’t understand that they don’t really get it.
Bill Gasiamis 1:01:48
It’s giving you that insight to be able to understand frustration about what an autistic child might be experiencing. With writing or with expressing themselves. It’s just so cool that you get that understanding, and it makes you better at your job.
Kristin Taylor 1:02:10
Yeah, yeah. Like I wouldn’t change it for the world. I absolutely love it.
Bill Gasiamis 1:02:16
Congratulations. I really love the way that you’ve evolved and overcome a lot of your challenges. When’s the next competition?
Kristin Taylor 1:02:27
It’ll be near the end of September so I’m competing.
Bill Gasiamis 1:02:36
And then are you training for that? The entire time? And then does this sort of training take a more serious sort of turn just before competition? How do you prepare for a competition like that?
Kristin Taylor 1:02:56
So right now, we’re technically in the building/the bulking phase. So we’ll try and increase my food as much as we can try and build as much lean muscle as we can. And then usually anywhere from about 20 to 15 weeks out from your competition, you start cutting calories and stripping back that body fat percentage, which that’s when Yeah, the mentor.
Kristin Taylor 1:03:27
Stage comes into place. But yeah, yeah. And then you have to after the competition, you reverse out of it. And you have to slowly increase your calories and everything and then you go back into a building phase to build more muscle and.
Post-Stroke And Training Diet
Bill Gasiamis 1:03:45
Wow. What is the thing the one food that you miss the most when you’re going into the calorie deficit stage?
Kristin Taylor 1:03:54
I love Krispy Kreme Doughnuts original glazed absolutely obsessed. Like they just ordered Oh, my sister always goes oh my god, here you again. And I’m like, No, they just melt in your mouth. And I just Yeah, I love them.
Bill Gasiamis 1:04:17
Fair enough. They probably the details delicious. I know exactly what you mean, they’re kind of plain and amazing and fabulous at the same time. I can see it. I can see the mental struggle when you have to go off them. How many would you eat in the year leading up to them and then do you go cold turkey on them. It’s just sounds like you have to start. It sounds as serious as stopping smoking or drinking or stopping alcohol.
Kristin Taylor 1:04:47
Yeah. When you’re when you’re eating prep and you’re in the cutting phase. It’s very, very straight to the point. I would go if I go out with friends for dinner. I’ll be sitting there at Kmart container of food it’s no drinking No, like, you’re Yeah 100% I have to track all your food to a tee you’re Yeah, you’re mentally exhausted.
Kristin Taylor 1:05:15
We laugh about it because you actually you get prep brain where you just, your body’s eating in starvation mode is firing because you’re you’re burning a lot more calories than your intake and yeah, but I guess it’s a sport and yeah, people would call us bodybuilders crazy. But yeah, I think you have to be a different breed to do it, but we just love it.
Bill Gasiamis 1:05:41
I agree. And do you get hangry? Hungry and angry at the same time?
Kristin Taylor 1:05:46
Very, very hangry. You get yery, very hangry.
Bill Gasiamis 1:05:55
Wow. Hey, thank you so much for being on the podcast. I really appreciate it. Thanks for sharing your story. I think it’s gonna make a big, it’s gonna help a lot of people listening, feel okay about the situation that they’re finding themselves in and overcoming that situation and then doing amazing things.
Bill Gasiamis 1:06:13
9, 10 years down the road, and maybe even further. I really appreciate it and it’s so nice to talk to a fellow Aussie every so often because because there’s less of us on the planet. There’s not so many who I’ve been able to get on the podcast. I truly love it. And I’m just so grateful that we could connect and that you’re willing to be on the show.
Kristin Taylor 1:06:38
Definitely. Thank you so much for having me. It’s been great. Yeah, it was a wonderful experience I’m glad I could share my stories.
Bill Gasiamis 1:06:47
Well, thanks for joining us on today’s episode to learn more about my guests including links to their social media, and other pages and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do that is to leave a five-star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:07:11
If you’re watching on YouTube, comment below the video, like the episodes and to get notifications of future episodes. Subscribe to the show. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find that easier. And that might make a massive difference to someone that is on the road to recovery after their own experience with stroke.
Bill Gasiamis 1:07:32
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify as be a stroke survivor or care for someone who is a stroke survivor or you are one of the fabulous people that help stroke survivors on the road to recovery just go to recoveryafterstroke.com/contact.
Bill Gasiamis 1:07:55
Fill out the contact form and as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:08:09
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:08:26
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 1:08:54
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your 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.
Intro 1:09:17
If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:09:34
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 “Stroke Abroad: A 21-Year-Old’s Journey of Survival and Recovery” Kristin Taylor appeared first on Recovery After Stroke.
1 hr 10 min
January 23, 2023 Link Between Lupus And Stroke – Kristy Duncan
Kristy Duncan experienced an ischemic stroke many years after living with Lupus at age 52. She’s on a mission to remind other lupus warriors about becoming complacent about the condition.
Highlights:
02:12 Introduction
02:53 Diagnosed With Lupus
03:49 Having The First Stroke Symptoms
06:07 What is Lupus?
09:18 Life In The Military
18:11 Learning How To Have Self Compassion
28:51 Dealing With The Physical And Emotional Stress
42:02 Recovery In And Out Of The Hospital
50:16 Kristy’s Mindset While Having A Stroke
54:01 The Pseudobulbar Affect
1:01:28 Finding Humor In A Terrible Situation
1:10:10 Dealing With Post-Stroke Deficits
Transcription:
Kristy Duncan 0:00
Because of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.
Kristy Duncan 0:21
But then my blood pressure actually started to drop. So then they did another scan. And then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems I couldn’t raise my arms on my left side.
Intro 0:45
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:58
Hello, and welcome back to the recovery after stroke podcast. This is episode 234. And before I get started with the rest of the show, I would like to give a shout-out to all the people who reach out and let me know how helpful it has been for them to come across the podcast.
Bill Gasiamis 1:15
Sometimes it’s the first place they discover after they themselves or their loved ones experienced a stroke. Not only that this is a shout-out to all my guests so far as well and the ones to come, because without their stories and willingness to share them.
Bill Gasiamis 1:31
This podcast doesn’t exist. Just this morning, I woke up to an email from Naomi, who told me about her husband who is a physician that experienced a stroke just 11 days ago. And since then she has found comfort in the interviews.
Bill Gasiamis 1:49
And it has helped her somehow deal with all of the unknowns that have come their way. So thanks again to all my guests and to all my listeners, you are helping me create this beautiful tool and it has come from such a terrible time in my life. And I’m forever grateful for how things have turned out and for everyone that is helping me to do what I love.
Introduction – Kristy Duncan

Bill Gasiamis 2:12
So thank you. Now my guest today is Kristy Duncan who is living with two autoimmune conditions that increase the risk of stroke. They are lupus and antiphospholipid syndrome. Kristy experienced her stroke aged 52 and joins me to help raise awareness in the lupus community and encourage others living with the condition to be more proactive, decreasing the risk factors that may cause lupus to generate blood clots. Kristy Duncan, welcome to the podcast.
Kristy Duncan 2:47
Thank you so much for having me.
Bill Gasiamis 2:49
It’s my pleasure. Tell me a little bit about what happened to you.
Diagnosed With Lupus
Kristy Duncan 2:53
Well, it actually started a long time ago, I have lupus. And that was diagnosed in 1994 with my first life-flight I was in the military and I started having chest pains at the tender age of 23. And they couldn’t figure out what was wrong with me.
Kristy Duncan 3:18
And it turned out that the sack around my heart was filling with fluid and crushing my heart. So they had to send me via medivac to a better hospital to do emergency heart surgery. So that was in 1994. So I’ve had lupus for a long time. And unfortunately, kind of lost sight of the stroke risk and the blood clot risk. And so did my doctors unfortunately.
Having The First Stroke Symptoms

Kristy Duncan 3:49
So that in November of 2021 it was veteran day of all things which I find kind of ironic, since all of this happened to me when I was in the military. My husband and I decided to go fishing and hiking. And so we were a couple hours from home is beautiful area.
Kristy Duncan 4:14
And as a matter of fact, an hour before I had the stroke symptoms start we were literally standing on top of a waterfall, looking down over the mountain. And thankfully it didn’t happen at that moment, got back in the car and drove to a little stream and I was filming my husband catch some fish, got into the car, sat down.
Kristy Duncan 4:38
The first thing that hit me and it still kind of bothers my husband to this day. If I get a bad case of hiccups. I guess hiccups can be a symptom sometimes in women, long duration of hiccups. So I had really bad hiccups that won’t stop.
Kristy Duncan 4:56
And I guess I just wasn’t acting right, I’m not really sure he just knew something was wrong. And I don’t know if I was slurring to him or what it was. But he drove down to a little store. They got a local EMT that looked like he was about 15 years old.
Kristy Duncan 5:17
And he came and asked some questions. And he called an ambulance. And then the ambulance, they came and asked me some questions and asked me to squeeze their fingers and looked at me. And it was when I was talking to them then I started hearing that I was slurring, and I sounded like I was drunk.
Kristy Duncan 5:39
And then they called the helicopter that landed in a field on top of this mountainside. And that was my second life flight, and flew me to the hospital, where they told me I had had a stroke. And that was a very scary time, still during COVID.
Bill Gasiamis 6:03
Tell me, what is lupus exactly?
What is Lupus?
Kristy Duncan 6:05
Lupus is an autoimmune disorder where your body creates antibodies that attack primarily with lupus, it’s collagen, which is pretty much in every organ in your body. And I have the systemic form of it. Systemic lupus erythematosus.
Kristy Duncan 6:28
And I also have another autoimmune disorder, which is what actually caused the clotting, which is called antiphospholipid syndrome, where my body creates antibodies that attack phospholipids, which are on cell walls and in blood vessels. So basically my own body turned against me.
Bill Gasiamis 6:54
Yeah, do the two conditions often go together lupus and antiphospholipid syndrome?
Kristy Duncan 7:04
I think it’s about 50% of lupus patients also have APS. But you can have APS as a primary autoimmune disorder as well.
Bill Gasiamis 7:21
Without the lupus.
Kristy Duncan 7:24
Right, but lupus in and of itself puts you at a very high risk for blood clots as it is four times higher than the average population is matter of fact.
Bill Gasiamis 7:35
What would be the regular way to manage the lupus condition? For people who have it? So I’ve heard of a lot of people who have lupus, they live a long time. There’s no real issue in their life most of the time, but every once in a while, you hear that somebody that who has lupus has had a stroke. So in the time leading up to your stroke, what was the way that you’re managing those conditions, and did that lapse did that management lapse and therefore cause the stroke?
Kristy Duncan 8:17
I would say that biggest thing about lupus is it’s an inflammatory type of disorder. So anything that you can do to manage inflammation, primarily stress. And there are medications like hydroxychloroquine is a very popular medication used to treat lupus.
Kristy Duncan 8:43
And I honestly should have been on blood thinners the whole time aspirin or something because of having the APS on top of the lupus but I wasn’t. So general treatment is trying to keep your stress levels as low as you can and keep your weight under control blood pressure, cholesterol, the normal healthy markers like that. And It hadn’t lapsed at that time.
Kristy Duncan – Life In The Military
Bill Gasiamis 9:18
Right. Is it easy to keep stress levels low when your job is in the military?
Kristy Duncan 9:29
Well, that’s what definitely brought it on. I attended a military school and then was active duty in the military. And yes, and what actually brought the lupus on the first flares, what they call it whenever it gets very active is a flu shot, a flu vaccination, so it triggered my immune system and then it wouldn’t turn off.
Kristy Duncan 9:58
So with the stroke. No my weight had gotten up a little bit, but I was working on getting that back down. But I was fairly active, I did yoga and exercise every day, we were hiking did a lot of that. I’m a certified health coach.
Kristy Duncan 10:17
So I watch what I eat. And I enjoy eating healthy foods and things of that nature. My cholesterol has never really been a problem, and my blood pressure was usually low and not high. But one of the things when I was researching, the risk of a stroke increases approximately every three years post diagnosis of having lupus at the risk of a blood clot anyway.
Bill Gasiamis 10:48
So it’s kind of like, as we age and go into the stroke risk category anyway, because as we age it, you know, the older you get, the more risk, you are having an ischemic stroke, more so than a hemorrhagic stroke. Then you’ve also got a condition, which is kind of bringing you into that zone, even more so than somebody who didn’t have the lupus or the antiphospholipid syndrome.
Bill Gasiamis 11:22
So, you’re gonna be at a very high risk. However, the doctor that you’re seeing, was that your long-term ongoing doctor, the one that you have been visiting for a long time? Or how do you change doctors over the years? And did perhaps the conversation about the level of concern, did it sort of ease as time went on rather than have you guys focusing on?
Kristy Duncan 11:56
I think that good question. I think that being stable for so long without having a Lupus flare, had both in the doctor’s perspective, and in my own had kind of lessened the hypervigilance. But I had literally gone to a rheumatologist the month before I had the stroke.
Kristy Duncan 12:23
And I was going through menopause. So I was taking some hormones for that, which I know can sometimes increase the risk. That doctor knew that. And he felt also because I was so stable, and all indicated that I was not in the age group to be of risk taking the hormones, but I shouldn’t have taken them. But I had taken birth control when I was younger with no issue. So again, a little bit of that. Overconfidence from a long period of time with no active disease.
Bill Gasiamis 13:06
Yeah, when you did when you took the birth control, were you aware of the stroke risk? It sounds like you are now but did you know at the time that there was a stroke risk, and did you take that knowing that there was a stroke risk?
Kristy Duncan 13:24
I was seeing my rheumatologist who I really loved at that time really enjoyed working with him and he knew and he wasn’t concerned and he was monitoring me I think better than my more recent rheumatologist, my gynecologist also knew and had treated many women with lupus and felt that it was he had me on a formulation that was the lowest risk.
Bill Gasiamis 13:55
So it sounds like there was a lot of conversation sounds like there was a lot of questions sounds like everything that you needed to do to understand the risk factors was taken into consideration. You made informed decisions. You had a really good run, you didn’t have any conditions.
Bill Gasiamis 14:15
And it’s similar to although you had this lupus condition, it’s similar to what other people describe, you know, I was really they’ll tell you, I was really healthy. I didn’t have any issues. I ate well, I exercise, I did all the right things. And then I had a stroke and I don’t know where it came from.
Bill Gasiamis 14:31
And it’s usually a sticking point. And I’m not trying to come up with a reason why it happened or anything like that. But I’m just curious about the mindset that’s leading up to your 52nd year. And then it sounds like it was on par, it sounds like it was on the right track.
Bill Gasiamis 14:49
You guys went about doing most things. And it’s pretty common when you have insurance on your house and you’ve never had your house burned down, you kind of say, well, you know, I’ve been paying insurance for 25 years, do I really need it? Like, it’s a really interesting question that does come up, and and then some people might make the decision that they don’t need it, for example.
Bill Gasiamis 15:16
And that’s their decision, but then the protection mechanism goes away, and then you’re kind of at risk of loss, you know, a heavy loss. So that analogy, I hope it kind of gives people an understanding of the mentality of, like, I’m looking for danger, there is no danger, I can let my guard down.
Kristy Duncan 15:49
And I also trusted my doctors to keep an eye on it. And I should have been watching it better myself. And that’s part of the reason why I was really interested in being on your show, because I know I’m not the only woman out there with lupus, who will either be faced with similar decisions, or not.
Kristy Duncan 16:12
But even something as simple as a baby aspirin a day, the risk of taking the aspirin is so low, but the benefits are so high. And I had lost a friend, I worked with the Lupus Foundation and was a support group leader. And I had lost a friend in 2016 with lupus, she had a heart attack.
Kristy Duncan 16:38
And she was very young. She was 35, and then I lost another lupus facilitator in 2021, about 10 months before my stroke. She died from lupus complications, not specifically, I wasn’t informed specifically, if it was a stroke or heart attack, but I was definitely at high risk playing Russian roulette, I guess.
Bill Gasiamis 17:20
Yeah. And it sounds like you’re being a little bit hard on yourself or you have a few regrets. Is that correct? Is that accurate?
Kristy Duncan 17:31
I’m being mild I’m being well-behaved compared to how I could beat myself up over this. Yes very much so. I was very upset about it a couple of days ago.
Bill Gasiamis 17:44
And you’re upset at yourself? Is it you that you get mad at?
Kristy Duncan 17:52
Frustrated at myself at my doctor’s just the whole thing. Yes. That’s something as simple as taking an aspirin a day could have prevented this. Yes. Trusting in the medical facilities so blindly.
Learning How To Have Self Compassion
Bill Gasiamis 18:11
Yeah. It’s a tough one. I mean, you only gain this knowledge in hindsight, but don’t gain it. Without this crappy situation occurring, this incident occurring, and that’s the thing the shit has to hit the fan before you know it’s happened. And then you can only deal with it once it’s happened. And I would ask people that are going through something similar to you is to have self-compassion for not knowing what you didn’t know, you know, to be your own advocate now, your best advocate now.
Bill Gasiamis 18:50
And to try and moving forward, take the role that you now know, may have been the role that would have made your condition potentially stay calm and not have a flare up. And be understanding that you’re not the only one that’s in the situation that you’re in because of lupus.
Bill Gasiamis 19:20
And if you were talking to a friend of yours, who has a lupus and had the same situation occurred to them, and they were hard on themselves, how would you speak to them about their own I’m not sure if the right term is self loathing or, you know, how would you go about sort of trying to ease their suffering at that moment?
Kristy Duncan 19:50
I would definitely challenge them to forgive themselves. Like you said you don’t know what you don’t know. sometimes. And again, that’s why I’m hoping that maybe this podcast will reach. And I’m going to share it with the Lupus Foundation in the hopes that it will reach other women and spark some deeper conversations with their doctors of what their risk level is that and is there something that they can do to to mitigate that.
Bill Gasiamis 20:29
I just love that idea. What you’re doing is such an amazing thing, because it’s exactly what’s necessary. I love that what has happened in this situation is you’re automatically thinking of other people. And you’re being the one that in order to raise awareness for other people, you’ve had to go through this thing.
Bill Gasiamis 20:52
It’s such a paradox that you have to go through something so serious and so life-threatening, but what comes from it is this amazing, need to reach out and ensure the safety of others because you’re wiser for your journey, you know, more about it now than you did beforehand. And the first thing on your mind is, let me reach out to the rest of the girls and let them know what happened to me so that they could be a little more informed, prepared, mitigating more of the risks.
Bill Gasiamis 21:39
I think that’s an amazing thing, that’s fabulous. And I hope that brings you some comfort, and hope that eases you know, that other part of you who’s angry and frustrated, which is I think it’s also absolutely okay to be angry and frustrated at yourself, but it’s just not useful, it doesn’t have an outcome that’s beneficial to you, your condition, and your ongoing journey. However, I appreciate that you’re there, and that’s okay. But I hope that angry person, part of you is eased a little by this other version of you, who is the one that is the compassionate, caring one and thinking of other people.
Kristy Duncan 22:29
It does help. I became a health coach so that I could help people and I have done some videos about my journey with the stroke on my YouTube channel. And I think it will be an opportunity to leverage my experiences in the future to help others yes. Because the point of the matter is, is we listen more to people who come from a place of understanding than we do from somebody who just doesn’t know what we’re going through.
Bill Gasiamis 23:18
The doctors tend to not know what we’re going through that is one of the fantastic and strange things, because we never want them to know what we’re going through, because the only way they’re going to know that is to have had a stroke to be in our shoes. And that’s such a terrible way to know what it is that we’re going through.
Bill Gasiamis 23:41
And therefore that makes them a little disconnected from what the shell that we live in, feels like inside and how it expresses itself differently on the side where you might have your deficit for me, for example, it’s the left side, I feel completely totally different on the left side as I do to the right side.
Bill Gasiamis 24:06
And I had this conversation with a friend of mine just yesterday. And we were talking about how I don’t like exercising, I don’t enjoy the way that it makes me focus on the way that my left side feels when I’m exercising as opposed to how my “normal” right side feels.
Bill Gasiamis 24:31
And as a result, I avoid exercise because it has moved on from being exercise and enjoyable to this constant. I’m out of balance, conversation or everything’s not the same conversation. And the only exercise that I do, which I do as much as I can and I love is I ride a bike because with an electric assisted motor in the bike.
Bill Gasiamis 24:57
It makes me not have that conversation in my head. One where, my leg feels weird when it goes down as I run, or my arm feels strange, as I move it, it makes all of that noise go away. And therefore, I can just move. And try to have a conversation like that with the doctor is near impossible. That’s why I started the podcast because I needed to speak to people who understood what I was saying.
Bill Gasiamis 25:25
So I can feel understood even though my doctor who was extremely helpful, didn’t understand that part of me. I was okay with that, you start to get to the point where you’re okay with it. And then what I love about your journey so far is then you’ve become your own self-advocate, you’ve taken responsibility for the advocacy part of this situation.
Bill Gasiamis 25:53
And you’ve taken it away from the doctors who, quite frankly, if they had to be responsible for every single patient that they had, that’s a responsibility, that’s way too big a burden to carry. And I prefer that asked the stroke survivors, and the lupus warriors and all the people that are going through it, I prefer them to be their own self advocate and to be.
Bill Gasiamis 26:23
So focused and passionate about finding out what else they can get their doctors over the line with what else they can ask their doctors for help for, because doctors sometimes just don’t realize that you need additional support, they look at the charts, they look at a very brief summary of what’s going on, they may only have 10, or 15 minutes to consult with you. And they’ve got to make all these decisions in that time.
Bill Gasiamis 26:51
And I only ever became my own advocate after my first and second bleed, there was no way that I was and I use this word because it’s lack of a better word “intelligent” enough to realize that I needed to take responsibility, and be my own advocate before the stroke, because like you, even though I didn’t have lupus, even though I didn’t have an autoimmune condition, I had 37 years of why am I paying insurance for it’s not necessary, everything’s fine.
Bill Gasiamis 27:25
I could smoke, I can drink, I can eat badly, and I’ll be fine, I’ll go to work and everything will be fine. And it wasn’t and I wasn’t contributing to supporting myself, I was contributing to making myself sicker, more unwell. So I kind of have a similar story to you.
Bill Gasiamis 27:47
Even though I don’t have the diagnosed underlying cause, because I had an undiagnosed underlying cause, sitting in my head, like a time bomb just waiting to go off. And I did everything that I possibly could to make the situation of my head, I made it more likely by every cigarette I took by every alcoholic beverage that I drink, I made it more likely that that thing was going to burst.
Bill Gasiamis 28:15
So beating up on myself, thankfully, was not something that I wanted to do. And that I felt good about. And it wasn’t useful. And it didn’t achieve anything in helping me my recovery, in fact that got in the way of my recovery. So still a little bit of a rant and hopefully you’re seeing the similarities, even though I wasn’t diagnosed with a condition.
Dealing With The Physical And Emotional Stress
Kristy Duncan 28:51
Thank you, I can appreciate that. Because we can all look back at decisions that we’ve made in our lives and realize some of them are just really bad. Like I went to a military school that I had no business being at, I didn’t belong there. I wasn’t strong enough physically or emotionally to be in that type of ultra competitive environment.
Intro 29:18
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things but obviously, you’ve never had a stroke before.
Intro 29:39
You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 29:57
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide, it’s free.
Kristy Duncan 30:21
And that’s what started my hyper stressed environment that eventually led to my lupus, the physical and the emotional stresses. Because you’re right, in military, you don’t have a lot of time to de-stress.
Bill Gasiamis 30:42
Yeah, that’s a lot to bear. Especially when you’re a young kid, you know, you’re some people are teenagers, when they join the military, others in their 20s, or whatever, it’s a lot to bear you just barely coming out of being in the most oblivious time of your life, you know, when you’re a teenager, which is the best, potentially, and then you go into this other world, which I understand is necessary.
Bill Gasiamis 31:10
And it requires people to continue to be a part of, but it’s not for everybody. But how do you know that when I’ll say this, but then take it the wrong way. When you’re so young and dumb, and you haven’t lived and you don’t know about life? How do you know and until you make the wrong decision? You just don’t know.
Kristy Duncan 31:41
Right? And I mean, sometimes you just have to look at why do you make the decisions, but sometimes you can only look back with wisdom on those when you are older. And you see alternatives that you didn’t see at the time.
Bill Gasiamis 31:58
Yeah, absolutely. And then you can redirect. And that’s part of our growth is to redirect and make less of the mistakes that we made when we were younger, because we’ve already been there. And we know we don’t need to go down that path. It’s definitely how my life has got calmer and better.
Bill Gasiamis 32:18
And I hear about people who are older than me, I’m 48. So I hear about people who are older than me, who say everything’s sort of, in their later years, everything’s chill, they know exactly what they need to do. They know how they enjoy their day, they know what pastimes they’re going to occupy the time with.
Bill Gasiamis 32:37
I think what it sounds like to me is that they’ve very much realized and learned what are the things that they, if they repeat, they won’t enjoy, that won’t be beneficial, that won’t be useful, they won’t be helpful, and they just weed them all out over the years. And then by the time they get to their, you know, seven years or wherever, there’s just nothing but wise decisions and wise choices for the for many of them.
Bill Gasiamis 33:07
And I feel like that’s why, you know, these older traditions and these older communities of native people. That’s why they had the elder, who you know, was depicted as being old and gray and wrinkly, and always talking to somebody who was younger than them and sharing their wisdom or giving guidance or whatever it was, I feel like that was lost on me when I was younger.
Bill Gasiamis 33:43
But as I’ve aged, it is starting to become more apparent to me that although I want to be connected with younger people, I also really need to understand for me what the next 20 or 30 years is going to look like and how I’m going to get to be the wiser elder
Kristy Duncan 34:04
Well, I don’t have children so I’ll be honest, I struggled to relate to really much younger than I am. I can relate to the 20s and the 30s some things that I work with, but I mean, I find it easy to talk to people about anything and everything but to go back to when I was a teenager. I mean, my husband and I’ve talked about this even with music nowadays, I don’t understand modern music in any of the draw that it has, compared to when we were are younger.
Bill Gasiamis 35:01
Yeah, it’s like a different language, isn’t it?
Kristy Duncan 35:05
It is very much so.
Bill Gasiamis 35:09
Well, I’ll give away a little bit of my secrets, I was really heavily and deeply into 90s dance music really deeply in it, and I listened to it now, all the time. Some of it is timeless. So my kids have been able to appreciate it. But then I also listen to a lot of metal like Metallica. Just one example, that’s good enough, because people kind of know then what my taste is like.
Bill Gasiamis 35:46
And, then sometimes I find myself listening to classical music, because of its power, and its energy, etc. And then most recently, like you to hear some of that new version of rock, or the new versions of pop, or the new genres that are around, it’s like, literally like they are a different language and my kids one of them the older one played in a band.
Bill Gasiamis 36:17
And they played a type of music that they called punk. It was not like the punk that I recognized from the late 70s and early 80s. It was kind of next level. And you actually couldn’t work out the words. But we were forced to go along and, and take him to gigs because he was underage.
Bill Gasiamis 36:42
And he couldn’t get into some of the pubs and some of the clubs that his band was playing in. And it was a real drag being there to listen for an hour to the show before him and then perhaps even the show after him while we waited to pick him up.
Bill Gasiamis 36:58
And it never kind of took hold it never embedded, it never grew on us we loved being there. Because we enjoyed watching him. But yeah, we couldn’t relate to that. So we found another way to interact with him. And that was just to be there with him in that moment, even though we had no idea what the benefit and what the draw card was.
Bill Gasiamis 37:29
Now that being said, I shouldn’t have judged his music on whether I liked it or not, because there was enough people there to really show that they appreciated the music, and that it was a draw card. And that they did understand that. So it’s like going into a different culture. And just going I’m gonna hang out here like going to France, for example, and saying, I’m just going to hang out here for a little while.
Bill Gasiamis 37:56
And I’ll see if I can learn something I don’t know. It’s interesting. And that might be the level of my hanging out with younger people. That’s kind of the extent of it. It’s not more they don’t engage as much with me as perhaps I have. But that’s a cool experience. That’s about all I need. I just need to be able to know what goes on in that world so that if somebody asks me, I can pretend that I know about that world and get a laugh.
Kristy Duncan 38:38
Well in support your son, so I think that’s a good thing.
Bill Gasiamis 38:42
Yeah, I think so if it comes from that place, then I think it’s easy to connect with the younger community because if it comes from I’m supporting you even though I don’t understand you, I think they feel supported. And that’s enough. That’s good enough. I’m wondering, with regards to the stroke, how long did it take for you to get to hospital and then released from hospital how long did your hospital stay take and then what were you left with that you have to overcome and recover from?
Kristy Duncan 39:21
Well I don’t remember how long the helicopter ride was. It was pretty quick. And I know it was pretty because it was beautiful fall leaves flying over all of the trees. That was pretty but I was obviously worried but I was also worried about my husband and you know him getting from where we were the two plus hours or so by car to the hospital. And then I was in the hospital I think for about a week and then in rehab for about a month and the hospital was a little challenging, because I was not vaccinated. And that was contentious in the ER.
Bill Gasiamis 40:09
Oh, gosh.
Kristy Duncan 40:14
Very contentious.
Bill Gasiamis 40:18
You weren’t vaccinated for a perfectly good reason as well. So the vaccine had previously caused you a health issue.
Kristy Duncan 40:29
Yes one that had been around for a lot longer too
Bill Gasiamis 40:36
I find that so bizarre that you’re that you’re in this life threatening situation. And the biggest concern is whether somebody has been vaccinated at the time. It’s just intense. And how did that go down? What was the conversation like, what, what eventuated
Kristy Duncan 40:59
I see that you’re not vaccinated. That’s correct. Mask, why, while he’s wearing almost Greg called it the Darth Vader mask, because it was like a full black face shield kind of thing. And I said, well, because I, obviously am a blood clot risk. And so then he proceeded to tell me about all of the people with COVID that get blood clots, and, you know, try to shame me into it.
Kristy Duncan 41:34
And thankfully, it didn’t work, because I think that would have increased my risk of further strokes. But he really wouldn’t back off until my husband got there and kind of, you know, made it clear that she’s not getting the vaccine. And so then I was in the hospital for about a week.
Recovery In And Out Of The Hospital
Kristy Duncan 42:04
The thing that was interesting is, I also feel like, while I was in the intensive care, or the ER, because of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.
Kristy Duncan 42:38
But then, my blood pressure actually started to drop. So then they did another scan and then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems. I couldn’t raise my arm on my left side.
Kristy Duncan 43:00
And so then, I went into I was in a rehab facility for about a month. And that was all during the holidays, from the day after Thanksgiving, I believed to the 23rd of December. And my rehab, I have to say, I really appreciate the facility and they did a lot for me and they had me walking with an AFO by the time I left, I did not need a walker, or anything like that.
Kristy Duncan 43:45
But I still have complete left arm paralysis. While I’ve got a little bit of shoulder, I can shrug a little bit and pull my arm a little bit. And my knee and ankle are very stubborn and resistant. And the challenge that happened was actually after I got out of rehab and was doing outpatient therapy, I did so well during outpatient therapy that they released me very quickly. And I’ve been doing all my rehab on my own from YouTube videos now.
Kristy Duncan 44:20
So I found some excellent therapists on YouTube, and I’m reading Anat’s book. And what’s very interesting is one of the therapists was using attenuation. One of her principles, he was using that in his video before I even knew what it was from reading the book. But I can see that using those videos and finding therapists and having a variety of different therapists that I’m working with and exercises is actually not a bad thing.
Kristy Duncan 45:00
And I think I’m getting, I mean, my left side is definitely getting stronger. But my club as my husband calls my left arm, we deal with a lot of things with humor, I have a very sarcastic sense of humor, so much so that the doctor in the rehab facility asked me if I was always like that, or if it came on after the stroke. I’m like, No, I’ve always been this sarcastic. So that’s helping, but I’ve been pretty much doing everything of that rehabilitation on my own.
Bill Gasiamis 45:45
Yeah. With regards to your diet now, and your understanding of the fact that your conditions are inflammatory. And what you need to do is, support them and create an anti-inflammatory state in your body. Do you have a different diet? Is there something that you’re doing that’s changed the way that you consume food and what you might avoid? And what you have included?
Kristy Duncan 46:19
Honestly, no, I lost 30 pounds from my stroke to getting out of rehab. And I’ve lost another two in the last month or so. I haven’t really changed what I eat. And I actually, I’ll be very frank with you. I don’t eat as well as I should I have a bit of a sweet tooth.
Kristy Duncan 46:44
So I still eat more sweets than I should. I have an occasional adult beverage not frequent. I’ve never been a frequent drinker. And I’ve never smoked. I think the biggest thing that I miss is I can’t do yoga and other types of exercises that I actually enjoyed. And that were very stress relieving to me.
Bill Gasiamis 47:16
So as a result of the condition that you’re in, you can’t do yoga, because is this spasticity in your muscles? Is that because you can’t get into well, some of those because of your arm, some of those moves won’t be possible?
Kristy Duncan 47:36
Right, I have yet to try a chair yoga I’m looking for some chair yoga, to see if those might work. I’m actually doing a retreat with two of my college roommates in June. And it’s a lot of breath-work, and yoga. But I’m going to do that from a chair because I know I’m not going to be able to get up and down off the floor comfortably.
Kristy Duncan 48:11
I may be able to do it in a limited space. I mean, I have fallen one time and I had to get myself up. So I know I can do it. But it’s not a comfortable type of situation. And with the one arm, it actually puts a lot of stress. I don’t know if you or any other patients have mentioned just about how it puts a lot of stress on the functioning side to make up for it.
Bill Gasiamis 48:37
Yeah. For me, it tightens my right side muscles and it gives them it over compensates my right hand side has to overcompensate to kind of keep the left hand side up and upright and not from tipping us over. So there’s always that happening. Were you in active duty at all during your time as a person in the military?
Kristy Duncan 49:14
Yes. When the lupus first flared and I had the flu shot, I was active duty. Yes. And as a matter of fact, that was another interesting situation. I was very sick having chest pains and spiking fevers. And basically, they couldn’t figure out what it was. So they just sent me home.
Kristy Duncan 49:40
They kept sending me home until one time. I just was like I’m not going home until you figure this out. And then they did a chest x-ray. And that’s when they determined I had pericarditis and my heart was grossly enlarged due to the sack around the heart.
Bill Gasiamis 50:00
And recently, have you still been involved and employed in the military? Or has that career ended?
Kristy Duncan 50:09
No I was medically retired after the lupus diagnosis.
Kristy Duncan’s Mindset While Having A Stroke
Bill Gasiamis 50:16
Okay. I’m asking because I’m wondering, was your training at all, did that come into play? Did that kick in, when you found yourself in a situation where you’re 52, you’re needing to be medivaced out of the place that you were with your husband? Do you have a mindset, some kind of training that you call on or you recall that you start to go through the motions of or that you apply to this dangerous situation that you’re finding yourself in?
Kristy Duncan 50:58
Just more of general mindfulness and breathing exercises that I had learned from yoga and and other mindfulness type exercises to help with stress management, yes. To the point where I had to when I was in the ER, and my blood pressure started to go down, I had to stop, not allow myself to get overwrought. But I had to stop the deep breathing as much so that my blood pressure would not keep going down.
Kristy Duncan 51:34
Because then it wasn’t allowing all the capillaries in other areas around the clot to get the blood flow. So I mean, they were literally tilting my bed at one point, putting my head lower, along with giving me medications to raise my blood pressure. But a lot of the mindfulness type exercises and things I had done, I had just were self taught to learn how to just keep stress levels manageable to keep my lupus calm.
Bill Gasiamis 52:15
Yeah, well, that’s definitely a great thing to do. Keep it as calm as possible in the most difficult times, especially when you don’t exactly know what’s going on. That’s probably the best thing is just to keep calm and to try and manage your physiological response to this situation that’s happening in your head. I think that’s a great thing. Your husband, how’s he going? How’s he managing this whole journey with you?
Kristy Duncan 52:43
Oh, he’s outstanding. I mean, he, he’s taken over. So many things that I used to do, shopping, animal care, taking the animals to the vet. And then just being a positive humor for me, keeping me going. We have this thing where because I do have a tendency to get emotional sometimes. And that is a little bit more post-stroke.
Kristy Duncan 53:17
But I’ve always been one that would. I mean, I used to tear up watching Little House on the Prairie. So we joke and we call whenever I start getting teary-eyed, we call that either squishing or getting mushy. And he told me I was getting nervous about talking with you.
Kristy Duncan 53:17
And he’s like, why are you getting nervous? It’s just a chat. And I said, that’s exactly what he told me. Just chatting over coffee. And he said, Yeah, except you don’t want to be drinking coffee or you have to keep getting up and go in the bathroom. But he’s like, don’t you dare cry. And I’m like, I’m not gonna cry.
The Pseudobulbar Affect
Bill Gasiamis 53:57
I’m being mushy, and that I think does come with a territory. I have you heard of the pseudobulbar affect?
Kristy Duncan 54:12
No.
Bill Gasiamis 54:13
Okay. It is a condition that ails stroke survivors and people who have neurological conditions where uncontrollable crying and or uncontrollable laughter is one of the side effects of having a neurological challenge I went through that and uncontrollable crying would happen at the drop of a hat. And let me tell you if the kitty cat walking down the road tripped over the grass it would be enough to get me crying like a madman just for no reason in the middle of everywhere.
Bill Gasiamis 54:54
I’ve spoken on stage and while in the middle of speaking on stage I find myself bursting into tears. But you know what happens, I thought it was going to be a negative thing. But then I’ve got the audience wrapped around my little finger. And I’ve just sucked them all in into feeling sorry for me into becoming really emotional, you know, they get out of their head, and they connect with their body.
Bill Gasiamis 55:22
And it’s a real lovely opportunity to sort of be a man be on stage in front of potentially a few 100 people and cry. And then, instead of that being a negative, it actually works in my favor. And now I own the room. And everybody’s paying attention, everybody’s listening.
Kristy Duncan 55:44
I’m an ugly crier though. So it’s just not a good thing for me.
Bill Gasiamis 55:53
Okay, so that complicates things a little bit, if you’re an ugly crier, but I totally get where you’re going. And the pseudobulbar affect is something that when people hear that, that is a thing, they do feel a little better about it, because I know that some men, and I speak for men, because I’m a man, the sun, men do have an issue with showing emotion and expressing crying.
Bill Gasiamis 56:20
And it becomes really challenging for them to find themselves in a situation where they’re being so vulnerable. It’s actually a positive thing. I feel like it’s a release of something that needs to come out that is getting in the way of recovery. So when it happens now, for me, it’s like, well, you know, that’s okay. And I would now probably cry over a Little House on the Prairie. Where I didn’t when was a younger kid watching it, I might cry now. I mean, there’s so many touching moments in that show.
Kristy Duncan 56:58
Well, I’ll have to let them know that it is quite normal. We are still very, more geared towards humor and being funny to help cope with a lot of things. So having animals helps with that. So we’re always finding something to laugh at them about.
Bill Gasiamis 57:21
Yeah. And I like the fact that you have humor. And if you can find humor in your situation, I certainly did find humor in my situation, one of the most humorous moments, which was terrifying and humorous, at the same time, was when I was going into hospital to have my last appointment before brain surgery.
Bill Gasiamis 57:41
So they go in, they check you out. They make sure all your vitals are where they need to be and all that stuff. And then they brought you in for surgery, it was literally going to be three or four days later. And I was in the hospital for probably a maybe a couple of hours. And on the way home, I started to get numbness on my left side, it came on really dramatically more dramatically than it had ever before.
Bill Gasiamis 57:44
My vision went, and I had a strange sensation on my face that was more dramatic than before. And I was told, and I went back to the ER, and I saw one of the nurses then I said to them, listen, I’ve just been upstairs, I’m getting ready for brain surgery, this kind of stuff. And I’m having a situation and not explaining it to them properly enough. And then not necessarily being certain about my history.
Bill Gasiamis 58:38
They just taught me to sit down and wait in the emergency room waiting area. So I did, and next to me was sitting a child who was probably autistic. And he had been to the bathroom and he was sort of sitting on the chair right next to me. And we were sharing the elbow rest.
Bill Gasiamis 59:02
And his mum asked him, did you go to the toilet? And he said, Yeah. And then she asked him, did you wash your hands? And he didn’t respond and that was enough of a response for the mum to know that he didn’t. And perhaps his hands weren’t dirty in any way. But she made a scene and made a point of it to him.
Bill Gasiamis 59:33
And I was holding the same arm chair that he was holding. So immediately when I’m going through the most terrible situation of being really concerned about potentially another bleed happening right there and now all that went away and the only thing I was worried about was did he come out of the toilet with clean hands and do I need to get up and go and wash my hands.
Bill Gasiamis 59:59
In the most terrible circumstances, the only thing that I was concerned about was whether or not I touched something I didn’t want to have touched. I found humor in that moment later after it happened we were talking about it humorously.
Bill Gasiamis 1:00:17
And that just goes to show that you can find something humorous in a situation, even though it’s potentially life threatening, and risky. And who knows what the animals are another thing that I absolutely love to hear people share about because they bring so much comfort and joy to people. How many animals do you have? What type of animals?
Kristy Duncan 1:00:51
Many. We have two cats. We could probably apply for an Animal Rescue because they just show up at our house and we don’t turn them away. But yes, we have too many. And while I was in rehab, my husband would send me pictures of them doing various things to help cheer me up and saying, you know, hurry home mom, and you know, little captions like that.
Finding Humor In A Terrible Situation – Kristy Duncan
Kristy Duncan 1:01:28
My funny stories, I think some of them are to make fun of myself, and some are just yes, they do help with the situation. One of them I laugh about now, but I later found out that if I had actually hit the nurse, it would have been a felony. But I don’t know if you’ve ever had them do the pain response to try to get you?
Kristy Duncan 1:01:55
Well, I, they were doing neurological checks on me like every two hours. And this one nurse came in, and she had the very hard artificial acrylic nails. And she kept pinching the back of my left arm, and I finally had to tell her, I said, you need to stop doing that.
Kristy Duncan 1:02:14
Because my right arm works, and I’m gonna slap you if you do that to me again. And she, you know, explain why and I said, I appreciate why you’re doing it. But I am telling you, it hurts and you need to stop. And she did, thankfully. I mean, I had bruises on the back of my arm from the sharp little fingernails.
Bill Gasiamis 1:02:43
She didn’t realize her strength?
Kristy Duncan 1:02:46
Right. And another time was just the funny series of events when my husband was gone one day, and it was just, I just realized how funny it was when I looked back at it. So I recorded a little audio and I shared it with some of my work friends, to kind of bring them up to speed and to share a little bit of, you know, a day in the life and I call it at lunchtime adventures.
Kristy Duncan 1:03:16
And they all just thought it was hilarious. Then another time. I fell underneath the house. And it was very minor. But I just kind of I did another recording of it and just kind of walked him through in slow motion, how it happens, like the placement of my legs and how I was leaning forward in a lunge. And my foot slipped and then I went down on my hands and I was wearing a raincoat.
Kristy Duncan 1:03:52
So then my elbow slipped and then I’m literally facedown in the mulch underneath the house, hoping that none of the cats had used the bathroom in the mulch so that I didn’t have my face. And I mean, I just had to laugh about it. And just I’m laying there, my face in the mulch, both arms straight eagle, just laying there. And all I got was a tiny little scratch from my glasses being pushed up on my forehead. So very, very blessed but just have to look at it from a humorous perspective.
Bill Gasiamis 1:03:53
Absolutely. Even nine years after my first incident, the falling over thing is something that happens to me. So this is a real dramatic situation. We’ve gone for a drive to see some family across one of the borders. I live in Victoria and we went to New South Wales, and it’s 1000 kilometers. And we drove there. We saw them and on the way back we’re driving and I’m looking in the rear vision mirror up, and I see this car with a trailer on the back of it.
Bill Gasiamis 1:05:04
It rolled, it tumbled and tumbled and tumbled and stopped on the freeway pulled over and expected to save the worst thing when I went went to that car. So I’ve run to the car, I’ve got there, and there’s no one in the car. And we were doing 100 kilometers an hour at the time, which is 60 mile. And the guy whose car, it was who rolled in the time that I’ve stopped my car, we’re talking about not even 30 seconds.
Bill Gasiamis 1:05:49
And the time that I ran back to his car to check up on him and everyone else was stopping as well. He was already on the phone calling a friend of his saying, I’ve stuffed up the car, come and get us out of here, you know, come and help us. And then I was looking around for a passenger was there any passengers and there was a passenger. And the passenger was telling me everything’s cool, we’re all right, nothing to worry about.
Bill Gasiamis 1:06:19
And I’m like, Should I bring an ambulance should I call for help. No we’re good, we’re all good. And it was just absolutely shocking. And it was the exact opposite to what I wanted to see. And it was amazing, it was fantastic. So it literally took me about another two minutes after first approaching them to head towards my car. So now these guys are in a car, the car has rolled it is totaled, they are out of the car walking and talking, telling everyone to calm down and keeping us under control.
Bill Gasiamis 1:06:54
And I’ve walked past the scene of the accident. And I’ve gone to get off the grass onto the road to go into my driver’s seat. And I’ve tripped over and I’ve fallen on my face. And I was wearing sunglasses and I smashed them. And my wife who was looking for me to try and work out is everything okay? Because I asked her not to get out of the car to make sure everything is okay.
Bill Gasiamis 1:07:22
Then immediately became worried about why I was on the ground face down, and why I had scratches on my face. And all I could do was laugh about it. I said to her, those guys are all right. But I think I might need to go to the hospital. I didn’t need to go to the hospital. But I did crack my head on the ground when I hit the ground.
Bill Gasiamis 1:07:44
It’s like it still happens to me nine years after the initial incident, the left side didn’t realize that I had stepped off of the off of the grass onto the road. And it kind of wanted to stay where it was. And as a result of that, I stumbled and fell broke my glasses, scratched up my face and was the most injured person at the scene. And those guys were in a rolled car and didn’t get it. But that’s the way it goes sometimes.
Kristy Duncan 1:08:19
Well, I was just excited to hear you say that you ran. I never enjoyed running when I was in the military. But I was in the kitchen making tea or something the other day and just told myself one of these days, I’m going to do a 5k again. And if you had asked me that this time last year, now I still would have been at strokeville two years ago, I never would have I’m like why would I ever want to run a 5k and now it’s because I can and I want to.
Bill Gasiamis 1:08:56
I love it. You should do it. Now a friend of mine I interviewed very early on in the series, I’ll share that particular interview. Her name is Donna Campisi. And she has a foot drop and she ran a proper marathon. She is trained and trained and trained. And she overcame that challenge ran 40 kilometres. With foot drop she trained with it. She got personal trainers and everything.
Bill Gasiamis 1:09:35
And I interviewed her way way back at the beginning before the podcast was called the recovery after stroke podcast for episode 28 and the episodes called running after stroke with Donna Campisi. And let me tell you, the amount of people that I’ve heard, who have overcome really dramatic deficits who have been able to complete marathons or half marathons or do some crazy things that I never would have done before the stroke they’re doing after the stroke, I think it’s amazing.
Dealing With Post-Stroke Deficits
Bill Gasiamis 1:10:10
And it took me a couple of years before I felt comfortable to start going back to the gym and running on the treadmill. Because I can’t, even though I can run to my car, I’m at risk of falling out because exactly what happened to me during that particular time seeing if those people needed help, because my leg doesn’t give me the same feedback as the right leg, I’m at risk of hyper flexing or overextending my knee.
Bill Gasiamis 1:10:48
And also my leg hits the ground a lot harder, so it doesn’t hit it nice and smoothly and subtly like my right leg, and it kind of just jars all the time. And I feel like it would be impacting my hips negatively, etc. So it took about, I would say a few years. And then the first time I went back to the gym to run, it was so uncomfortable. And it was so man, it was weird.
Bill Gasiamis 1:11:25
I can’t explain I didn’t really enjoy it, my leg would fatigue far quicker, say my right side wants to keep going for kilometers and kilometers and my left sides going, I’m done. It’s a few 100 meters. And I’m done. I’m not I don’t want to go any further. So it’s a complete mind struggle to continue to make my leg do the do the task to run. So when I was in therapy, and my physical therapist asked me what was one of my goals, I said to him to run.
Bill Gasiamis 1:11:59
And he was like, okay, cool, do that. Do you want to run marathons? Or what type of running do you want to do. And I said, I just want to be able to run across the road in case of cars coming. And it’s unsafe, and I need to get off there. That’s it. If I can do that, I’ll be wrapped. So that’s what we trained for. That’s what I did and overcame.
Bill Gasiamis 1:12:18
And now I can almost run across the road, so to speak without having to think about the sensation differences. If it’s a short road and a short distance. It’s too short for me to go into the overthinking pattern. But if somebody says to me, let’s go for a run around the block or down to the park, it’ll be a no for me, I’ll I’ll ride my bike, you can run and we’ll do that. We’ll do it like that.
Kristy Duncan 1:12:48
Yes, I enjoy hiking much more than I ever did running. And I don’t think that was more, I can’t do it now and I want to do it. So that kind of thing. But I’ll be glad when I can just wear normal shoes again, I have to wear a large hard plastic AFO because my ankle rolls on my left side. So I started out with just a drop foot AFO and that wasn’t enough. So I wear a size eight on my right foot and I have a size 10 on my left to fit the AFO in there
Bill Gasiamis 1:13:38
So just the size difference in the two shoes would make it a little bit odd as well. Because of the amount of space that the shoe takes up compared to the amount of space that the right shoe takes up.
Kristy Duncan 1:13:55
Potentially, I mean I can walk fine around the house, except at night I don’t use a cane or anything. When I go out I use actually a hiking walking stick because I found that that neutral position is gentler on my right hand and wrist because all my fingers have like trigger finger now and the tendons are tight and it hurts my wrist and it all the way up into the shoulder so I find that when I go out in public that the stick is much easier on my arm
Bill Gasiamis 1:14:38
Yeah. The right tools are really important in this situation and you can make things worse by using the wrong tools. I am still a little bit amazed and shocked in the fact that a AFOs are still such, the technology still seems really old.
Kristy Duncan 1:15:12
Rudimentary, almost for the hard plastic with just a little bit of a hinge. Yes.
Bill Gasiamis 1:15:20
This day and age, I find that a bit strange that the technology hasn’t moved. And there isn’t some Silicon Valley whiz bang TECHO guy going, we need to change this part of physical rehabilitation, and make it better and more efficient and thinner and stronger and more flexible or something, I don’t know, I think it’s a bit weird that we’re still in that situation with AFOs. But at least there is something that does help.
Bill Gasiamis 1:15:54
And it does help a lot of people. I’ve also come across a few stroke survivors who have had a AFOs and thought that the AFO was getting in the way of the recovery of the leg. And then they’ve decided that somehow they were going to remove the AFO and then go about rehabilitation without it. Some, I imagine with more success than others.
Bill Gasiamis 1:16:25
But that’s another interesting mindset shift and change that they had, which was perhaps this thing, which is technically supposed to be helping me is actually decreasing the recovery of the foot drop, and not making it and training of the foot not to recover perhaps. So different things.
Kristy Duncan 1:16:49
That is interesting. I am, I make myself walk a few steps without it every day. And even just to stand up on the side of the bed without it to get the feedback through the bottom of the foot. Yes, and sometimes if I’m really feeling daring, I’ll walk all the way into the bathroom without it because I can hold on to things very carefully. Because my ankle, it rolls very badly. And I’ve just found a video about how to stop the ankle rolling because of the tightness in the calf and the spasticity. So I’m going to start working on that too.
Bill Gasiamis 1:17:39
Fantastic. Well, Kristy, I really appreciate you reaching out to be on the podcast, I love why you did it, why you’re doing it. I love that you’re thinking of other people, and that you’d like to raise some awareness in the lupus community. And I wish you well in your ongoing recovery. And I want to offer you some hope and tell you that it’s early days in your recovery. And I think there’s a lot more recovery to go.
Bill Gasiamis 1:18:10
And I feel like with your attitude of a little bit of laughter, a little bit of self deprecating humor, and all the sarcasm and all the stuff that you need to do, I think it’s going to be really helpful as you go forward and continue to improve and get better. Thanks so much for being on the podcast.
Kristy Duncan 1:18:35
Thank you very much. I’ve enjoyed it. And I enjoy all your other podcasts. Thank you very much.
Bill Gasiamis 1:18:40
Well, thank you for joining us on today’s episode to learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is leave a five star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:19:05
If you’re watching on YouTube, comment below the video, like the episode and hit the notifications bell to get notifications of future episodes and subscribe to the show. These things make it possible for the algorithm or nominees on all these networks to assume or to believe or to think that the show is worth putting in front of a whole bunch of other people. Every time you do that, it gets spread to more and more people who need this type of content.
Bill Gasiamis 1:19:40
People like Naomi, who don’t know they need this content until something happens and they have nowhere else to turn initially. So I would really appreciate it if you interacted with the episodes as much as possible wherever you possibly can. Also by sharing the show with family and friends on social media, it will make it possible for those people who may need this type of content to find it easier.
Bill Gasiamis 1:20:08
And that might make a massive difference to someone that’s on the road to recovery after their own experience with stroke, it may also make a difference to their loved ones who are supporting them and trying to get them better. If you are a stroke survivor with a story to share about your experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor, or care for someone who is a stroke survivor.
Bill Gasiamis 1:20:36
Or you’re one of the fabulous people that help other stroke survivors. Go to recoveryafterstroke.com/contact, fill out the contact form and as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here. I truly appreciate it. Thanks for listening and see you on the next episode.
Intro 1:21:02
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcasts 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 at any length 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 1:21:32
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 1:21:57
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 000 zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:22:21
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 Link Between Lupus And Stroke – Kristy Duncan appeared first on Recovery After Stroke.
1 hr 23 min
January 16, 2023 A Heart-Centered Recovery – Bill Lee Emery
Bill Lee Emery was recently given the all-clear after being diagnosed with stage 1 throat cancer. The wisdom he shares about following the lead of his heart while on the road to recovery is relevant for people overcoming any health setback.
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Evolve Australia
Highlights:
01:44 Introduction
03:30 Diagnosed With A Throat Cancer
10:24 No Two Cancers Are The Same
14:57 Refusing To Take The Prescribed Painkillers
22:38 Blessing or Curse
28:41 Communicating With Your Body
39:48 Mainstream vs Alternative Medicine
48:09 Man’s Search For Meaning
59:54 Nothing Is Sacred Anymore
1:08:00 A Heart-Centered Recovery
1:17:16 The Three Things In Life
1:24:12 If You’re Not Following Your Heart
Transcription:
Bill Lee Emery 0:00
I’m here, I’m listening to my heart. I really love my body, we have a really nice time on the inside of us. I have a beautiful partner, we live in a beautiful part of the world. We have a gorgeous community that we live in.
Bill Lee Emery 0:16
There are so many blessings in my life. And Julie and I, when we go for a walk around our village, here we, we often say, Okay, three things, what are the three things that we’re grateful for.
Bill Lee Emery 0:30
And those things helped me to remind, sometimes of the little things. Just the little things that can bring so much joy, it doesn’t have to be a big thing. It can be a simple, simple thing. But that, to me brings more richness than some of the big milestones in my life. I’ve got to appreciate the little things more and more and more.
Intro 0:56
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:09
Hello, and welcome back to the recovery after stroke podcast. This is episode 233. And to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:25
If you’d like to support this podcast, the best way to do it is to leave a five star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video like this episode and to get notifications of future episodes, subscribe to the show and hit the notifications bell.
Introduction – Bill Lee Emery
Bill Gasiamis 1:44
My guest today is my friend, Bill Lee Emery who has recently overcome a throat cancer diagnosis who has the most amazing approach to recovery and the most amazing outlook on life. The wisdom he shares is relevant for people overcoming any health setback. If you are anything like me, you will see how our conversation is applicable to stroke recovery as well. Bill Lee Emery welcome to the podcast.
Bill Lee Emery 2:11
And thank you, Bill. So good to be here.
Bill Gasiamis 2:14
It’s so good to have you here. It’s been a long time, my friend. How long was the last time since we caught up?
Bill Lee Emery 2:23
I don’t know if my memory goes back that far.
Bill Gasiamis 2:27
Was it at my place over dinner? Or was it in Queensland at one of your courses?
Bill Lee Emery 2:34
Gosh, you know, I don’t know. At my age, that’s not such a good thing to do.
Bill Gasiamis 2:42
It was one of those look, I’m younger than you. And I still can’t remember exactly the order. But every time that we were together, it was a really amazing interaction. And although we’ve kept in touch online through Facebook, and I kind of get to know what you’re up to, and you kind of get to know what I’m up to.
Bill Gasiamis 3:03
I was a little bit shocked about one of your recent posts about some of the stuff that you had been through recently with your health. And I know it’s not related I know it’s not specifically a stroke story. But it is a story that’s similar to what a lot of stroke survivors experience. Tell us a little bit about what happened to you and what it was that your health scare was about.
Bill Lee Emery Was Diagnosed With A Stroke Cancer
Bill Lee Emery 3:30
So in July last year, I was diagnosed with throat cancer. Fortunately, stage one so I was lucky enough that I felt a lump here on my throat and it’s a bit unusual for that might have been a lymph gland. So I waited two weeks still there and it was a bit hard. So I went to see my doctor he said Yep, go check it out. So did a whole variety of different tests. And then I think was the CAT scan or the biopsy.
Bill Lee Emery 4:09
Basically the cancer was at the base of my throat. And this was like an offshoot if you like, this is the early warning signal for me. So because I found this and were able to find this and it was stage one. But I’ve never had a night in hospital in my life. I’m 73 I’ve never had any major illness or any major accidents. So I’ve been blessed with good health. And then to hear this was a bit of a shock to me.
Bill Gasiamis 4:48
Yeah. I can’t relate to that specifically because I was a lot younger when I had my dramas 37 But before that It was smooth sailing, so to speak until 37. And how I can relate to you is through my dad, because my dad Touchwood he’s been really well he’s turning 80 in a couple of days.
Bill Gasiamis 5:12
And what was interesting about going through that time when my dad was unwell and it for him while he was unwell with dodgy knee that he needed to have surgery on and replaced. And he was out of action for about three months, where they operated on his knee, then it was a time of rehabilitation, and then he had to get on his feet. And I remember how deeply that impacted his psyche, and how deeply that made him feel sort of put him into depression, and all these things that I had never seen in my dad before.
Bill Gasiamis 5:55
Really usually somebody who’s quite stoic, able to cope with a lot of stress, challenges, all the things that life kind of threw his way. But then to see him off his feet for three months, which was temporary and in the space of his lifetime, because the surgery was only about maybe seven or eight years ago, it was such a small amount of time, but it had such a massive impact on him in a negative way. Until he got back on his feet. What was it like for you to receive that kind of news? And then to kind of grapple with the what that could mean, in your head?
Bill Lee Emery 6:33
Yeah. So the so the doctors and several doctors told me this, I said, the thing that will help you go through this one is support. And your you know, Julie, so I have, in my part, I have a superb support system. Like I’m so blessed. So support was one thing, but mindset and mindset is the other is that these two things will make the difference between really how you deal with what’s going on, and how you process and recovery, etc, etc.
Bill Lee Emery 7:11
So one of the things, one of my default the things that I hold in my life is that nothing is good or bad, except that I make it. And Shakespeare put it very well when he said and how much nothing is I think he said that nothing is good or bad except how you make or I forget the phrase exactly. But so this I knew was a potentially pivotal moment in my life, especially around health.
Bill Lee Emery 7:47
So it could either be a blessing or a curse. And the choice hack was not going to be a curse. So I was going to turn it into a blessing. I didn’t know how. But that’s a framework that I had this experience is going to be a blessing for me, I have no idea how it’s going to turn out what’s going to happen. So let me just skip forward a bit. So during treatment, a lot of the Allied staff including speech pathologist, occupational therapists, and other allied staff will say to me, you’re amazing Bill.
Bill Lee Emery 8:29
And I’m going in my own head. Well, yeah, I’m amazing with or without the cancer. But I’m just what they’re saying what they’re really saying is Bill, the way you’re dealing with this is amazing. And for me, it’s not me being amazing. The thing that was amazing if something was amazing was a structure that I had that supported me through this.
Bill Lee Emery 8:29
So the structure itself is the thing. That’s amazing. I just happened to be using it. Now because I’ve been around. You know, I’ve trained with elite athletes training with the National skydiving team. I’ve worked with world class golfers, triathletes. So I know a lot about mindset and how to use it.
Bill Lee Emery 9:16
So this is a real opportunity for me to take those things that I’ve been using for somewhere 40 years and go, Okay, this is where the rubber hits the road. This we’re really going to use all the stuff that I know, and it’s going to be solid. And so I had some very clear boundaries.
Bill Lee Emery 9:35
Now when you mentioned cancer, the response I got from some people when I said you know, I got throat cancer, and some people say oh my gosh, how awful for you. I go, No, it is not awful. It is my cancer. My stage of cancer is 90% curable so it’s not awful. And I would not take on board and I was kind of I hope I wasn’t too blunt.
Bill Lee Emery 10:02
I was firm. Like, that’s your story about cancer I understand what your meaning, but it’s not awful, it is manageable, and I’m going to deal with it. And so this was the structure that I had inside of my head. And I’m so glad I was strong enough to have it and not get into other people’s, “oh you poor thing” kind of stuff.
No Two Cancers Are The Same
Bill Lee Emery 10:24
And I wasn’t going to have a bar of that. Like, they could see the fire in my eyes a couple of people like oh, okay, right. And but they got it, they understood what I was getting out that nothing is good or bad, except that I make it. And the other thing I learned through this as no two cancers are the same.
Bill Lee Emery 10:46
And it’s the same with stroke with brain injury, no two things are the same. They may have similarities, but the individual events within a human life. And so because, you know, I’m a healthy human being, I don’t smoke, I haven’t smoked for like 40 years or something I smoked when I was a teenager, my 20s I hardly drink, I’ve got very good diet, I exercise.
Bill Lee Emery 11:18
So all these things meant that my body was in a pretty good shape. And there are other people that had maybe less healthy structures in middle life. And so if they would come to this kind of event, they would have a different outcome. Now I got it at stage one. So it was right at the beginning.
Bill Lee Emery 11:37
And I said to the ENT surgeon, lovely doctor, I said okay, well, what if I wait six months or 12 months? He said, Well, you can. But he said when you come back, it might not be stage one. So I’ve been around so called alternative medicine or natural medicine for 40 years.
Bill Lee Emery 12:00
The medical system is an alien thing to me. I wouldn’t take Astros when I had a headache I you know, I use acupuncture points or drink a glass of water or something. So to go into this world of pharmacology and of high-end medicine was something of a complete unknown for me and for Julie my partner.
Bill Lee Emery 12:25
So we had some major things to learn. And one of the experiences I’ll tell you it’s kind of funny, but kind of tragic. One of the things that happened in throat cancer and as the ENT surgeon said, he said swallowing is likely to become it’s got to feel like you’re swallowing razorblades Oh, okay.
Bill Lee Emery 12:50
Just swallow, and for me, just being able to swallow was such something I look forward to be able to do so without this. This feeling of I’m swallowing razorblades and it’s painful. And I lost my appetite and didn’t know what to eat, I lost weight, but anyway, does that soak up from what they normally do at the beginning of treatment?
Bill Lee Emery 13:15
So I had from when I got my diagnosis. You know, Julie and I, we pondered do we go down the medical path? And fortunately, my naturopath is also a nurse happens to work with the oncologist that we were talking with. And she said if I were in your shoes, Bill, I’d go down the medical route. It’s a seven week treatment, seven weeks of chemo seven weeks of radiation five days a week, chemo once a week.
Bill Lee Emery 13:48
It’s a short intense period of time. Once you’re done with that, and then we can do all the things that I’m used to doing like acupuncture, naturopathy, chiropractic etc. Homeopathy use all those things, not only during as support, but also after. So it was a seven week actually nine week intensive sprint.
Bill Lee Emery 14:15
I have a friend of mine who’s had a seven year journey with cancer and that stage four prostate cancer. And he actually wrote a book called Patting The Sharks by Tim Baker, I highly recommend people read that whether you know, cancer or not doesn’t matter. It’s a story and what he did.
Bill Lee Emery 14:33
But coming back to this at the beginning of my treatment, I’m supposed to have a feeding tube that goes into your stomach. It’s I don’t have it here. But it’s basically a tube 20 centimeters long and it’s, you know, it’s a thin tube. It’s basically so if I can’t swallow, and I’ve can’t swallow, I’m going to die. You got to swallow take nutrition in.
Bill Lee Emery Refused To Take The Pill
Bill Lee Emery 14:57
If I can’t swallow, then at least I can in through the feeding tube. So I go in for the open, it’s hot out, but they knock you out and etc. So I come out of this and I’ve got a feeding tube in me and I’m about to go home and say, well, here’s some drugs that you can take for pain. So good old hippie me. I said, well, what’s the alternative? That way you can take some Panadol. I really got this hardcore nuclear-powered pain control pills.
Bill Lee Emery 15:29
I take Panadol now I go home and I take one Panadol. And one Panadol is like farting in the face of a cyclone, it doesn’t know bloody good at all. I imagine if you haven’t done any exercise, and then Sunday, one day you go, I want to do 100 crunches, you know, add crunches, and then you’re gonna lie down slowly.
Bill Lee Emery 15:51
The pain was extreme when I lay down in bed, because I took one bloody Panadol and so and the look in Julie’s face when she’s seeing me go through this extreme pain that was actually harder than the pain itself. Anyway, we who went to certain naturopath and she said, Bill, just take the bloody drugs.
Bill Lee Emery 16:40
And so I had to go, Okay, just give me the drugs, man, give me the drugs. So I go back there take these nuclear power, pain control pills, and they work. So I had to learn to become a surgeon on my body. So I don’t normally pee at night, not until I had this cancer, then my body would wake me up at to 2:30 or four o’clock in the morning, at 2:30 in the morning, I don’t want to get out of bed and go do a wee.
Bill Lee Emery 17:20
But I had to realize I am the servant of my body right now my body needs me to do things, take the drugs as required. Get up at 2:30 in the morning, go do a pee and come back and go to sleep. So I became a servant to my own body. And I’m really glad I made that shift. Because I stopped doing the internal arguments like I don’t want to do this. And if my body needed it, I would almost salute and just do it.
Bill Gasiamis 17:48
I love that concept. My dad, going back to the reason for your explanation is my dad didn’t want to be the servant of his body after a lifetime of being well and doing as he pleases, so to speak. He didn’t want to give his body three months to just heal from having a new knee, and then he created his own additional mental anguish and suffering to the physical suffering that he was experiencing.
Bill Gasiamis 18:31
And it’s unnecessary, because I think that that mental anguish, decreased the rapidity of his physical recovery and his mindset was not that of somebody who was going to overcome this adversity. It was somebody who was stuck in a moment in time and couldn’t see light at the end of the tunnel a path forward.
Bill Gasiamis 18:58
Literally, after being forever well. And then just finding himself for like, you know what the audience would say? It’s like, the amount of time he was unwell. It’s like pissing in the ocean like it makes a difference. It’s like you’re saying about fighting in a cycle and and trying to make a difference. It’s such a small amount of time yet to see him suffer through that was worse than seeing suffering him suffering from the pain of being freshly operated on and stitched up and immobile.
Bill Lee Emery 19:34
Yeah. And that’s actually you know, for anyone listening here, this is such an important point. When when I had my PET scan, so we test came back said Yep, we’ve got throat cancer here. Then I had the PET scan to see if there was cancer in the rest of my body. So I had the PET scan on a Monday, and I was supposed to talk to the oncologist on the Wednesday. Well, he got COVID so that kind of blur that out, so it didn’t actually talk to him till the Friday.
Bill Lee Emery 20:04
So I had five days of wondering, is it just here in my throat? Or is it in the rest of my body? And it was like being, you know, practice mindfulness for a long time? Well, this was mindfulness on steroids. You know, I walk out, you know, where we live here in the Eco village. And I’ve looked at nature and I’ll be again, wow, it’s like I was, you know, back in my 20s, smoking dope going far out, man, look at this leaf.
Bill Lee Emery 20:34
And it was like, every single day, no day was Ordinary, ordinary day, just every day was like, an adventure, because I didn’t know what was going to happen next. But one of the things I was very clear about my body was about to go through a whole bunch of trauma, chemotherapy, radiation, like neither of those things are pretty things.
Bill Lee Emery 21:03
And what I didn’t want to do was to add more stress to my nervous system to my adrenals. So maybe twice, in that period, I would go forward into the future with a negative outcome. Oh, my God, what if I did it twice, and I’m going whoa, hang on Bill. I’m a servant of our body, I’m not going to hit myself over the head with all this unnecessary angsting. Because I didn’t know what was going to happen.
Bill Lee Emery 21:33
And if I don’t know what’s going to happen, then at least give myself the best chance of something good happening, because it’s either a curse, or it’s going to be a blessing. So I didn’t allow myself, I had boundaries on my own imagination, I wasn’t gonna go forward and scare the shit out of myself, about all the horrible things that could possibly happen to me. I knew there was a 90% chance of recovery, and I was gonna be in that 90%. So I had a very clear outcome.
Bill Lee Emery 22:01
And so for anyone listening to this, when you get any kind of diagnosis like it’s almost indulgent “what if” “poor me” I understand it. But it’s indulgent, our body, just does not need that extra stress. And I’m really glad I had those clear boundaries, other people, but I had those really clear boundaries with myself, I wasn’t going to do that to myself.
Blessing or Curse

Bill Gasiamis 22:38
What’s interesting that came up for me when you said it’s either a blessing or a curse, even a curse could be a blessing. Right, because we label something as a curse. Before it has been able to fully play out its lifeline, its cycle. And again, labeling it occurs is again, taking us down that path of despair, taking us down that path of negative mindset I’ve stuck of being fixed of not being able to see the light at the end of the tunnel. Yet, I know that, you know, and I’m writing the chapter in my book at the moment, which is a chapter about stumbling across your purpose.
Bill Gasiamis 23:27
My purpose be this podcast writing a book about supporting stroke survivors, doing all that stuff came from, what was or appeared to be to some people a “curse”, I never took it that way. But some people did. And now those people are the ones who 10 years down if you you happen to get into a conversation with them and kind of give them the update of where I am now what I’ve overcome whatever achieved, etc.
Bill Gasiamis 24:01
If you remind them what they said 10 years ago, or what they imagined or what they thought that perhaps this was some kind of a curse. They would, they would have a completely that they would their head kind of wouldn’t be able to comprehend that what they said such a long time ago could have been so short-sighted. Do you know what I mean? Like it was so short-sighted.
Bill Lee Emery 24:36
Yeah. And it’s about perspective. And it’s also you know, it’s tough when you get, you know, a diagnosis of any kind. That can be potentially life-changing or life-threatening. But there’s so many people doing extraordinary things in the world. And they’re doing it Because of some event that happened, that could have been a curse, but they’ve taken that thing. And they’ve made it into their life’s purpose, their life’s work, and they’ve been able to serve like you are so many people because of that particular thing happened.
Bill Lee Emery 25:16
And many people said to me you know, am I am I going to share what I’ve, what I’ve learned? And I’ve written a couple of books this, you know, and Julius hits me. This isn’t going to become another book, as I say, well, now one, well, kind of well, yeah, probably. So of course it is, of course, it’s gotta go revocable something I’m going to be doing this year, because there are things that any of us, you and I, if you’ve been doing something for a period of time, you can take that for granted.
Bill Lee Emery 25:55
Almost, it’s like everyone knows that stuff. Well, not everyone does. Not everyone knows that things that you and I have experienced and some of your listeners have experienced. And so for me, if I can adjust some of the people I would speak to in the hospital and around, just give them a little, a few snippets that go, Wow, that’s amazing. Game one. Yeah, it is amazing.
Bill Lee Emery 26:17
So it’s even more amazing when you use it. So talk to some of the nurses about pain control, you have that language, a whole bunch of different things. So, you know, this is an event is neither good nor bad. And I intend to make it a blessing. So there will be a book, my version of what’s been going through my life last six months, so that maybe other people can pick it up.
Bill Gasiamis 26:42
I feel like and, again, this just coming from me, right? I feel like it’s your obligation to write a book about it. Do you know what I mean? You know, where I’m coming from coming from a place of love, right? It’s that the only thing we can do as human beings, well, we can do lots of things. But I think the only meaningful thing that we can do is make life better for other people, whether we’re here or not.
Bill Gasiamis 27:11
If we can make life better for other people, our purpose in life, our life’s purpose has been met, we’ve done it. And I feel like everybody doesn’t have to write a book. But I think everyone has an obligation to write one if they have the resources, and if they can, and if they choose to. And it’s like, there’s no doubt about it, that your version of your story, although it’s different from mine, I can learn from it, I have already learned a lot from it.
Bill Gasiamis 27:41
And, and the fact that you’ve already experienced what it’s like to not be able to swallow and to go through occupational therapy and to go through all the things that you went through, there are things that stroke survivors go through stroke survivors often lose their ability to swallow because of the stroke. Others have that ability taken because of the stroke of then it’s complicated by the tubes that go down their throat and the amount of time they need to keep them there. And there’s no doubt about it that what we’re all doing is doesn’t matter how our, our suffering, turns up, we’re all going through suffering, and we’re looking for a way out of suffering. And that way out is the part of the story that needs to be told yes. And shared so that others can go, I might try and do a little bit of Bill’s version. And I might try a little bit of that guy’s version and so on. And then yes, let’s see what happens.
Bill Gasiamis 28:08
And there’s no doubt about it that what we’re all doing is doesn’t matter how our suffering turns up, we’re all going through suffering, and we’re looking for a way out of suffering. And that way out is the part of the story that needs to be told and shared so that others can go, I might try a little bit of Bill’s version. And I might try a little bit of that guy’s version and so on. And then let’s see what happens.
Communicate With Your Body – Bill Lee Emery
Bill Lee Emery 28:19
Yeah, because all the things that I did my system that I had, I didn’t make them up other people made them up. And one of the things that I found really, really useful. And something I’ve been doing for a long time from my Gestalt training, is I talk to my body, you know, me and my body have a lovely relationship.
Bill Lee Emery 29:03
We really like each other, you know, I’ll hug myself sometimes, and even in public, don’t scare too many people don’t do it on buses, me, and my body had this really beautiful, intimate relationship. And I’ve been doing this for a long, long time. So when I first got the diagnosis, me and my body would have a chat and say, Hey, buddy, this is what’s going on. And the other thing I did not do is wage war on my cancer.
Bill Gasiamis 29:39
Tell me about that. This is really interesting.
Bill Lee Emery 29:41
Because you know, the war against drugs, the war against terrorism, the war against this, the war against that, in my view, all it does, is put money and attention into places where you don’t need it and they’ll never stop drugs on the world, they’ll probably never stop terrorism in the world. But you find all these different companies becoming extremely rich because of it.
Bill Lee Emery 30:10
And so when people have a battle against their cancer or their stroke, they are fighting their own body. Now, me and my body, my psyche, my DNA, my genetics, everything, my view of the world, my childhood upbringing, my traumas, all these different things, we all collaborated together, and it came up in a form of throat cancer. So it’s like, if I was to stab my toe, will be to blame my toe, and hit my toe for stabbing it against a rock, well, I’m part of my toe, it was my lack of awareness not looking where I’m going, then I’m connected to this.
Bill Lee Emery 30:57
So instead of fighting my cancer, I decided to collaborate with my body. Because together all of us, you know, me, myself and I and my body, etc, we co-created this, it didn’t pick on me, it’s something that we did together. So rather than fight it, I would collaborate, I would talk to them about it, say, Hey, this is what’s going on. Here’s some treatment. So even before I had the treatment before chemo, before radiation I would tell my body, this is what’s about to happen, take the good things that we need from this, you know, high end medical system that are so alien to me and the pharmalogical drugs that they’re gonna give me take the best that you need from this.
Bill Lee Emery 31:40
And, you know, let’s get rid of the rest as soon as we can. So I talked to my body, just before I go to sleep, I’d say Hey, buddy, how you going. And we’ll have this lovely chat. And, I have to share this with you, this is just a beautiful vision I had, you know, as cells in our body are dying, and replenishing as we speak, you know, all the time.
Bill Lee Emery 32:03
So I had this kind of vision of, there were two cells. And it was like, you know, in a race when you have a relay, and there’s a baton that you pass from one to the other. So it was like, the one that was dying would pass on the bathroom of the DNA to the new cell. And the old cell would whisper to the new cell, hey, our human being loves us.
Bill Lee Emery 32:29
And so the new cell would get this information that our human being loves us, we go, wow, good, we have a human being they just loves us and appreciates us. And it was dancing and running off until the next one. And so it was such a blissful kind of experience.
Intro 32:47
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 33:11
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 33:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide it’s free.
Bill Lee Emery 33:50
I don’t take drugs I could feel the cells in my body just radiating out appreciation for my appreciation of all the hard work that they were doing through this seven week intense in a fairly intense kind of sprint, it was a sprint, not a marathon. So and just being able to do that I think made a big difference.
Bill Gasiamis 34:23
For as long as I can remember before I knew that the way we speak to ourselves has a physiological response. Right? I used to do that with cold so I’d have a get a bug over winter or whatever and I’d let it run its course for a couple of days and then by day three or day four, you know I’d be over it as well. I wouldn’t want to I’d want to get back out and about and whatever not go to bed and just say okay, it’s been a couple of days you’ve done your thing.
Bill Gasiamis 34:54
I appreciate it, I’m taking notice, I’ve you know, rested and I’m good gonna continue to rest and get better and heal myself and the nose, you can stop running now and the chills, they can go away now and you know the rest of the body can just do what it’s got to do to get me back on my feet and make me feel better, etc. And I will do that always after probably day two, maybe day three, and then the next day, I would start to notice a shift in the way that I’d feel.
Bill Gasiamis 35:31
In the times that I didn’t do that my cold my recovery or whatever you want to call it took a little bit longer, three, four or five days, and it would extend out. And I’d be off my feet for a little bit longer. And it was I think me just not paying attention to what my body was telling me and then not doing what it needed me to do, and therefore extending that, but when I did pay attention to my body, and I did tell it that I was paying attention and listening, it was coming, it was decreasing the amount of time that it was expecting me to be on my butt resting.
Bill Gasiamis 36:10
And again, I took this into surgery when I was going into brain surgery for the after the third bleed in 2014 in November 2014. And I remember, I had spent about three years preparing my body for this particular surgery. And I had stopped drinking caffeine, gluten, dairy, alcohol, all those things were out. And I was in the best shape I had ever been. And the whole purpose of that was to deliver to the surgeons the best possible version of myself. So what they’re dealing with is just my head and not with the rest of my body.
Bill Gasiamis 36:54
And that I figured was the best gift I could give them. Seeing as though I really wanted a really good outcome from them. And I expected them to be on their game, right. And then I remember, I got in touch with a guy who is a hypnotherapist amongst other things. And I asked him to come and take me through a session where the outcome was to have a conversation with my body about how much it was going to bleed during the surgery and for what purposes it would bleed. And when it would be necessary and when it’s ok to stop.
Bill Gasiamis 37:37
And that’s basically what we did, we went through that process so that when the and that I told my brain that it was going to be opened up and interfered within that when it happened, it wasn’t going to be a shock to the brain, it was going to be prepared for it. And that when that finished that was also going to be a a time to just settle down, relax, get into healing and let let the next sort of part of the process take its course.
Bill Gasiamis 38:09
And I don’t remember any of that conversation that I had with my hypnotherapist because I was under I was out. It was an hour session. It felt like about a minute or two. And when I went into surgery, we had been given the expectation that this is going to take the majority of the day, I was the first person booked in because they expected it to take the longest.
Bill Gasiamis 38:40
And they were planning on a massive long day. And I was in surgery for half the time that they expected. And it was a real kind of surprise to the surgeons when they were speaking to my wife saying, look, this went really well everything that we needed to do was done with took out the faulty blood vessel. You know, he is going to recovery now he’s going to recover but the surgery took half the time to what we thought.
Bill Lee Emery 39:18
What you’re saying here, Bill, it is so important. I learned to negotiate and make deals with my body 30, 40 years ago, and the same thing you know, I get a cold or flu or whatever. And I say I’m becoming a servant on my body. Now in my journey into mainstream medicine and pharmacology, etc.
Mainstream vs Alternative Medicine
Bill Lee Emery 39:47
There’s this sometimes a separation of views. There’s mainstream medicine and there’s so called alternative medicine. And both these fields, sometimes throw Scud missiles at each other. And they that learn from the wisdom that are both caught. And I have to say I appreciate all the millions of dollars that they put into these machines that were wurring around my head and body with the radiation.
Bill Lee Emery 39:48
Because I might have been the same state. So I have now and for pharmacology, I have a great deal of appreciation for that. But one of the things they don’t always share some of the wisdom that comes from maybe a more philosophical approach, my radiation specialist at the end of my treatment, we were reviewing my progress. And he said to me, he has asked me what I was doing.
Bill Lee Emery 40:54
And I was telling him, you know, because they pretty much heard my story all the way through, he said, Bill, you’re not normal. And I said, Thank you. Can I quote you? He said sure. So that’s the first line of my book, Bill, you’re not normal. And my point here is that if only the surgeons who worked with you, and I don’t know whether they did or not, and I’m assuming that they didn’t.
Bill Lee Emery 41:24
But they said, hey, you know, this guy Bill that came in? How come it took half the time? Yeah, if every patient that came in, did the same thing that Bill was doing. We can get twice as many people in a day. Or we could spend half a day playing golf whatever they choose. So why isn’t that they don’t go just Oh, yeah, that just, you know, that’s weird.
Bill Lee Emery 41:52
And they don’t go exploring? Well, what are they doing? So I was talking to my radiation specialists whose full name is Siddhartha. They call it his name, they called Sid, I’m going Siddhartha as in Prince Siddhartha, as in who became Buddha? And he is smiling, because he knows, but not too many people, I guess, know that I’m going well, I have got Buddha as my radiation specialists.
Bill Lee Emery 42:21
And he was telling me a story in Western Australia, where a naturopathic friend of his wanted to get together with some mainstream people, and have a conference where both opposites if you like, could meet and share wisdom. And it never got off the ground. And he said, he’s a guest who candidate? I’m going to medical people. He said, No, it wasn’t. He said it was the naturopaths.
Bill Lee Emery 42:51
They didn’t want to deal with the opposite side. And really, what I’m saying is here is there is a place for Integrative Medicine, where we take the best of both, and we get both sides to explore and see what’s in the other camp. Because there may be some things that are just out of your viewpoint that can actually save a lot. They can reduce suffering, that maybe there’s some drugs that you do need, maybe there’s some homeopathics, or naturopathic things that can mitigate some of the side effects of medicine.
Bill Lee Emery 43:25
When I cut the list of what the chemo can do, there was like five pages of all the things that the chemo therapy can do to my body. I think if I looked at that list, the beginner would have gone whoa, all of that stuff. No, thank you. But fortunately, I was working with a natural, so Well, okay, take the drugs for this, and we can mitigate those side effects. So, you know, as a consumer, I’ve got the best of both worlds.
Bill Lee Emery 43:53
I’ve got the high end, you know, technology and the drugs. But I’ve also got the wisdom from acupuncture, which has been around for 5000 years, or more. So I have regular acupuncture and going to my chiropractor and have natural probably I can say my naturopath, I’ll do all these things to support me because I wanted to give my body the best chance of so my mantra through this was to heal through it and thrive from it, not just survive, I want to thrive.
Bill Lee Emery 44:29
So now I’m in the thriving part of all of this, because to just give an update just before Christmas, when I had another PET scan. So it was three months at the after the end of my treatment of radiation and chemo. They give you a PET scan to see what’s going on. And my pet scan was an all clear. So my body has gone through this journey. It’s come out it’s okay there’s no cancer cells anywhere. It’s all that now I still need to check every three months and then every six months.
Bill Lee Emery 45:01
You know, we kind of figured that was going to happen, but it was really good to get the clinical results of clean Bill of health. And, and that’s in part because of the state of my body to begin with. But also because it’s for that I got because of the mindset I had, because of all the beautiful test another thing that we did the beginning, Julie and I decided, okay, so this is going to be January, I don’t know how it’s going to happen.
Bill Lee Emery 45:31
But let’s have let’s call in human angels along the way, let’s have these beautiful human beings pop up exactly when we need them. And they would, in our health fund in government services in the hospital, we’d have people come in to do some gardening for me because I didn’t have the energy to do that at all. Someone produced pumpkin pie so all these human angels will pop up and go, Wow, this is far out, how long has this been going on.
Bill Lee Emery 46:02
So we keep on we’ve kept that going, we’re still calling in human angels to help us to do this to do that. And so this is now a permanent thing. And human angels are everywhere, your Human Angel, to so many people I am to so many people. And so they’re there, we just have to kind of once you call them in, they show up more often. Because now you recognize that they’re there.
Bill Gasiamis 46:26
The similarities in the stuff that you’re coming up with, that happen to you that you experienced, and the stuff that happened to me and I experienced and all a whole bunch of other stroke survivors who I’ve spoken to, you know, more than 200 Now on my podcast, is just uncanny. And I’m gonna go over it, but I’m gonna do it at the end, because I know we’re going to touch on more.
Bill Gasiamis 46:49
And I just, I’m not surprised. But now that I’ve seen the pattern it continues to pop up in every aspect of life. It’s just, it’s just fabulous that we all share actually the same pattern to get to this point. i The point that I got two strikes, the best thing that ever happened to me. And what you’re describing is you’re describing a lot of the key things that made it possible for me to say, and many other stroke survivors who I interviewed to say that and that came from a situation that was not ideal suffering.
Bill Gasiamis 47:31
And then what else came from that was from attaching meaning to that suffering. Which then if you attach meaning to suffering, and then you take action on that, then that leads to purpose. Now, some people listening might not be at purpose yet, but they are already in the phase of experience suffering, they’ve attached the meaning to it, and now they’re starting to reach out to make a difference for other people.
Man’s Search For Meaning

Bill Gasiamis 48:09
And what’s to come is their life’s purpose will emerge because that’s what life’s purpose is. And that reminds me of an equation that Viktor Frankl spoke about which is despair = suffering – meaning.
Bill Lee Emery 48:42
Yes, I was thinking about Viktor Frankl and he, of course, was a Holocaust survivor. And what’s his book in search of meaning?
Bill Gasiamis 48:52
Man’s Search For Meaning.
Bill Lee Emery 48:54
Yeah, which is like, you know, from such a dire kind of horrendous place. You know, that was his book, and his experience and the way that he approached it was his gift to humankind, which was such a precious gift, and so many people that have gone through horrendous things. But what’s emerged from it, and you say, the best thing that’s happened to you and, this has been one of the best things that happened to me, I gotta say.
Bill Lee Emery 49:27
Because of the gifts and the gems that are there. And if when something like this happens, we can have the foresight to go, okay. There are gifts amongst this. I don’t know what they are, but I’m going to look for them, then you’ll find them. But if we go in going, this is shit, this is horrible, this is a disaster. Then they have right in front of us, but we don’t have the eyes. We don’t have the ears. We don’t have the consciousness and notice that they’re there. And so we miss them.
Bill Lee Emery 49:58
And so we have to go Through all this despairing and more suffering, like, I don’t know who said it, but it might have been, it might have been Buddha that he said, but it’s like pain is inevitable. Suffering is optional. Any living things are going to experience pain, and suffering is an optional extra. And to the degree that we do despairing around our suffering, then we don’t make anything useful of it. So no matter what happens to us, we can, we can if we choose, and it can take, you know, understand this can take a lot of courage, it can take a lot of perseverance, it can take a lot of consciousness to go and do that.
Bill Lee Emery 50:40
But the alternative is just despair. And that’s just plain shit. No good thing about playing despair, and you can pick yourself out of it. So at least people listening to this, if they’ve listened to the other podcasts that you’ve gotten and for other people is, it comes down to us, in the end, it comes down to us and our state of consciousness, and our perspective and what we choose to do with it.
Bill Lee Emery 51:18
Because you know, we can have all this laid out in front of us, it’s like going to a banquet. And we’re starving, hungry, it’s laid out in front of us. But until we reach our hand up and pick out a piece of fruit, or, you know, a piece of chicken or whatever, and we eat it, and we consume it, and we do something with it, is there in front of us, but it’s no good until we actually take some kind of action.
Bill Gasiamis 51:45
Yeah, one of the things that I think Viktor Frankl was really good at was understanding the different types of suffering. So he definitely experienced physical suffering, because he was in a concentration camp, they used them as slave labor to build train tracks and to build infrastructure and to build all this stuff that they needed to keep the war effort going. So he was in constant physical suffering, because of the lack of equipment, shoes, the beatings that he would receive.
Bill Gasiamis 52:17
And then he realized that there was another aspect of suffering the mental suffering, which was the one that was going to be his worst enemy. And that he separated that the physical suffering from the mental suffering and he made the mental suffering, he transformed that into this is going to mean that I’m going to be able to get back to humanity, when all this ends, and I’m going to be able to tell the story, and I’m going to be able to help people overcome things.
Bill Gasiamis 52:50
And he also, as a psychotherapist, he was also able to use his skills to support people get through whatever it was that they were going through while they’re in the concentration camp with him. And what I think I also understood, but I haven’t been able to find a follow up to it was that he was also able to, for the moment, while he was in their time, kind of put a pause on the emotional suffering. Because he saw so many horrors, that what he had to do was disconnect from that for that time.
Bill Gasiamis 53:23
And then as a result of that, he kind of park the emotional suffering. And I feel like, but I never got to see any information about Viktor Frankl later. I feel like he dealt with the emotional suffering later. Yeah. But while he was in that moment, he was kind of accepting the physical suffering, transforming the mental suffering, and parking, the emotional suffering, and they all got dealt with in the appropriate time.
Bill Gasiamis 53:58
And when you see him speaking interviews on YouTube, you know, maybe I think in the seven years he’s being interviewed about his time, and about his experience and what he learned and what he taught other people he doesn’t appear to be the kind of person who I would picture talking about his time in such terrible circumstances in such a terrible situation, does not put that vibe out at all.
Bill Lee Emery 54:28
Yeah. And I think you know, when we’re in a time of crisis, you know, let’s say there’s a car accident and someone’s injured if we, you know, cry and wail and moan and and have a big emotional reaction then we’re not much good. You know, at that point, you’ve got to Okay, move the body, help the person in the way do things stop the traffic, get help, etc.
Bill Lee Emery 54:55
And park your emotional distress about it, and then deal with it later. And of course, the body becomes a vehicle for anything that’s an Express, that’s not resolved. And so, at the beginning of my treatment, I went to see someone who could help me deal with any of the past emotional things that have led to me because it’s the throat chakra. I’m the youngest of three boys had to get my voice heard, there’s a bunch of things around this.
Bill Lee Emery 55:30
And part of my story was, you know, my throat was my weak link. And if I get a cold, and it would hit my throat first. So my story around my throat was this was my weak link. And I’ve been keeping the story going for decades, once I realized that I stopped that. And now this is actually my strength, and my voice has got power. The other story around me is I’ve got a cast iron stomach when I was a child, so I could eat anything. And that’s a really healthy thing to have.
Bill Lee Emery 56:03
So I was really the language around my throat, and how I would do this. So, you know, when I look back, and all of these things, and you know, the emotional aspect, the DNA aspect, the things from my ancestors, all these different things that culminated in this experience for me, giving me an opportunity to learn more about myself. One of the things too, when I was doing my NLP Master Practitioner, there was one of the trainers a guy called Peter Dawson.
Bill Lee Emery 56:37
And he was well known in the NLP field for doing what he called slaughtering sacred cows. And what he would do, he would take one of the concepts around NLP. And he’d pull it apart, he would slaughter the sacred thing that we had held in NLP, I think it would help us put it back together and why. So one of the sacred cows that I’ve had since I was 28 29, is I haven’t eaten red meat in like 45 years.
Bill Lee Emery 57:12
I did that because I learned I’d come out of the world of computers and start a whole new life and now I’ve been meditating. And when I first started my body said, Bill, you don’t need red meat anymore. And I’ve been an avid red meat eater. And so I went okay, sure, and I just stopped eating meat. And then that became part of my identity. I am a non meat eater, I would eat chicken or fish, but I don’t eat red meat.
Bill Lee Emery 57:43
So when I was going through chemo, and chemo just shatter my blood cells, like just annihilated them, my platelets were down my red blood cells were down they were just like as a mess. And at one point, I couldn’t actually have chemotherapy because my platelets were down so low. And then the next week, they were down even lower. So not only couldn’t I have chemo, but they had to give me a blood transfusion.
Bill Lee Emery 58:12
And a friend of mine said, Bill, the best way to get your blood cells, your hemoglobin back up again, is actually eat red meat. I haven’t eaten red meat in 45 years, but now I’m a servant of my body. If my body wants red meat, I’ll eat red meat. And my daughter who’s 32 now and she’s a vegetarian has been all her life has never eaten meat ever in her life. So I’m telling her Hey, darling, guess what, I’m gonna need some red meat now.
Bill Lee Emery 58:53
So I said a men’s retreat and I told people what was going on. I said I’m slaughtering the sacred cow of a non meat eater and now I’m going to become one and on the Saturday morning, they most of its vegetarian and saturday morning we’re going to have sausages and bacon, etc. So I’m going, alright it’s a good time. So I had two sausages, and some bacon and some eggs and mushrooms, etc.
Bill Lee Emery 59:24
And I ate them down. Too much too soon. My body was just going, what are you doing Bill? So that next morning, I was like I was I miss workshops in the morning. I couldn’t participate. My body was just churning and I just you know beef sauce is probably not a good starter bacon probably not a good idea. I would have been better off just having little bits of brisket.
Nothing Is Sacred Anymore

Bill Lee Emery 59:54
So I did tell my body okay, body, I’m gonna give you some red meat because of blah, blah, blah, and here it comes. And my body should’ve said, Bill, not two sausages, maybe a quarter of one and forget the bacon, let’s just do this bit by bit. And so I kind of learned from that, and my next door neighbor was making this beautiful Angus beef lasagna. And it looks so really nice, so lovely.
Bill Lee Emery 1:00:24
And I had a slice, and I should have had a quarter of the slice, because the next day, you know, my body is going oh no. So now I’m a very slow red meat eater, but that was me, again, being a servant to my body, and taking the things that I’d held as being sacred. And going, you know, when I first stopped eating red meat, my body didn’t say just for a week, Bill was just for a year. And I kept it as an ongoing thing. I never questioned it.
Bill Lee Emery 1:01:01
And so the lesson for me is, you know, whatever I take on board, maybe I need to review those things. And in this space, what my body’s actually needing is a little bit more protein from red meat. So I am taking a little bit, and it really helped me to go at that time I’m going, anything is open, I’m willing to look at any part of my life, in service to my body, nothing is sacred anymore, nothing is sacred.
Bill Lee Emery 1:01:34
And that was like a big jump for me. Because, you know, there are certain things that I would hold as being this is it, this is me, so everything was on the table. The only thing the higher, logic ever around this was like, if it says my body, I’ll do it, if it means standing on my head, whistling Dixie, that I’ll do that. Whatever my body needs, I’m gonna serve it.
Intro 1:02:00
It feels similar to the way people bring behaviors from the teenage years or from the 20s. Or from, you know, when they were in primary school and apply them to life when they’re 30 40 50, or 60. And it’s like it was appropriate, then, yes, times have changed, things have moved on people around you are different. No one knows your history in the place that you work, for example, that behavior is no longer appropriate, you can stop doing it, expressing it, telling us about it, whatever it’s possible to stop, and to change it and to turn it into something else.
Bill Gasiamis 1:02:43
Because it just has no value here. It’s like trying to plug in, you know, the very first television that was ever invented in 2020, you’re not going to get anything out of it, you’re just going to be wasting your time. So it’s really interesting, and you did it a couple of times, you also did it with your ideas and your thoughts around, you know, modern medicine, and whether it was appropriate to go down that path.
Bill Gasiamis 1:02:43
And up until that time, it hadn’t been appropriate, it wasn’t necessary, and you did well in I’m not gonna say avoiding it, but in not being reliant on it, because you did a great job. And then when it was necessary, yeah, it was necessary. And that idea from your 20s to be a, you know, that hippie version of you.
Bill Gasiamis 1:03:40
Express itself, but not so fundamentally that it was going to then be in the way of you getting better. And being able to tell the story about it and then being able to write a book about it that’s coming up. And then also, you’ve gone down that path of changing, turning this or evolving this or growing from this, this other work that you want to do and help men out. Tell me a little bit about what else has evolved from this situation that you went through?
Bill Lee Emery 1:04:12
Yeah, so I’ve done a lot of work in the last 10 years around men’s work. There’s an organization called Men’s Wellbeing Australia, which is a national thing and that two gatherings that happened in Queensland one called Manhood and the other ones called Man shine. And I went to an elder’s gathering and was initiated as an elder, officially an old fart now.
Bill Gasiamis 1:04:43
Congratulations.
Bill Lee Emery 1:04:47
And in that work, you know, men are typically portrayed as not having access to our feelings, and I had to say that’s completely wrong in the right circumstance, we are fully connected to all the feelings of human beings have.
Bill Gasiamis 1:05:10
What’s the distinction? We are fully connected. So, men are perceived that way. You, and I both agree that we are connected. But what’s the distinction there? What is the thing around men and their feelings that’s challenging? Or, that’s an issue.
Bill Lee Emery 1:05:27
So again, that’s like, you know, as we’re a teenage we act in a certain way. And we generalize about life as a teenager or life as a male life is a female, and that women are more in touch with their intuition. Well, you and I both know that intuition is a human thing. It’s not gender specific. But you know, cultures grow up, and men do this, and women do this, and etc, etc, etc.
Bill Lee Emery 1:05:55
And so we get assigned certain ways of, you know, men can’t multitask. Well, I have to say, multitasking, is a load of shit anyway, in my view, you’re better off doing one thing at a time being fully present. So part of my involvement in men’s work is, it’s been such a sacred space for honesty, and truth, and respect.
Bill Lee Emery 1:06:22
So when we sit in a circle, and someone has a talking stick, that only one person speaks at a time, no one tells people want to do there’s no advice giving, there’s no philosophizing, there’s only owning your own stuff. So we use a lot of I statements. So I feel I think I do, not you do we do is me owning my stuff.
Bill Lee Emery 1:06:46
And within this space, when human beings, male or female, because I know women’s groups do the same thing, too. When we’re allowed to express what we’re feeling, what we’re thinking, and our experience of the world, without interruption, without advice, without someone telling us how to do or how to be, we can become our own healers. And what we do is we create the space around there for absolute intimacy, and honesty.
Bill Lee Emery 1:07:24
So going back to, you know, my earlier conversation about the structure that I had, structured creates everything, everything has structure, one kind, when we have a clear structure, which leads to a certain outcome, then the structure is the magic. You know, we have to go through and do the magic thing. So you know, when the doctors and nurses are saying, you’re amazing Bill and going yeah, well, right. What’s really amazing is the structure that we’re using. So in men’s work, that’s a very clear structure.
A Heart-Centered Recovery

Bill Lee Emery 1:08:00
And I guess why I’m led to this and why I love it so much. It’s very heart-centered. It’s very heart-centered. You know, people don’t care when we go to the gatherings what your status is, what kind of car you’re driving, how much money you’ve got, how many houses you got? Your investment? The only thing the only criteria is how open is your heart?
Bill Lee Emery 1:08:26
How generous is your heart, how compassionate is your heart, not how clever you are or how gutsy are you are as a warrior it’s what’s in your heart. And that’s why I love this particular space, and why I’m doing a lot of work in that area. And that’s where, you know, this next area of my life is going to be around doing that. And the other thing that comes from this, too, is, you know, I said before that I want to heal through and thrive from.
Bill Lee Emery 1:08:58
So part of my thriving is helping men in particular. But not exclusively, find their second wind. You know, when you’re in a competition, and you’re in a race, for example, and you hit the wall, it says they come from this point of exhaustion, but you keep on going. And what happens is you kick into a phenomenon called the second wind, and you’ve gone through all the hard stuff, you know, the hustle and the grind and, and the exhaustion and the pain and the determination.
Bill Lee Emery 1:09:29
And then when you get into the second when it’s easier, there’s less effort, and you get further faster. And for me, a lot of people half the age men in particular, you know after the age of 45 50 they’ve come from the corporate world, they’ve done all the hard yakka and now they want more ease and grace. Now they want to live more on their heart. So my work really now is helping people find their second wind, what’s the thing that brings them joy, what’s the thing that makes their heart sing.
Bill Lee Emery 1:10:03
Because in my world, if my heart has not singing, it’s probably sobbing quietly somewhere in a corner. And I would much rather use my skills, things that I’ve got to help people find what makes their heart sing. And, to allow more that space into the world. Because, you know, when I look around the world, and all the things that I see happening, which I’ve never seen before, in my whole life, we need more heart singing and laughing.
Bill Gasiamis 1:10:36
It sounds like it’s supporting people to, to apply meaning to their life now that the we’ll call it hard stuff is out of the way, raising the family paying off the mortgage, or that kind of stuff, and then potentially even uncover and discover the purpose for their life. Because purpose takes on this weird thing again, you know, kind of we fall into purpose when our kids are born in that, you know, we make our purpose about our kids, and then they and then they leave the house.
Bill Gasiamis 1:11:18
And then it’s like, shit, what am I supposed to do now? My purpose, if my identity is so narrow, and it’s only ever focused on a needs to provide for my family, and for my kids, you’re going to be disappointed in about 20 years or so. And then you might have another 40 or 50 years to go. And you have to find another way to occupy your time that’s purposeful, and meaningful, and it might not be grandchildren because although grandchildren kind of come, they’re the ones that you’re happy to hand back.
Bill Gasiamis 1:12:01
They get somebody else’s problem. So that’s interesting. I’ve also kind of find that people fall into purpose at work, for example, they might start off in the first job they ever get, and then that job may lead to a promotion. And that may lead to promotion, they might even like their job specifically. But a pays well, that pays the bill helps them achieve their purpose of raising the family, if they’ve got a family if they haven’t, it’s where they create their communities where they create connections.
Bill Gasiamis 1:12:36
That’s where they, do all their lifing. And then they get to retirement or just before retirement or some crazy corporate takeover, or redundancy or whatever. And then everything they’ve ever done, the purpose for going to work and for living abruptly comes to an end. And then it’s like, I’m 40 Something I’m at maybe midlife crisis stage. What the hell do I do now? Like, who am I? How do I go about life without what I’ve known for the last 20 years, and I haven’t put any thought into, I haven’t put any thought to what comes after that phase of my life.
Bill Gasiamis 1:13:18
And I’ve been naive and thinking that that phase is forever a forever phase. It’s like, as if, as if something was going to last forever. And last that long, that I don’t have to put any work into thinking about what may come later or what or how I need to position you know, the, the parts so that they can serve me down the track. It’s like being it’s kind of living life without purpose, but thinking that you have one.
Bill Gasiamis 1:13:55
And then you realize I actually didn’t really have a purpose, I had a task and my task was to raise my children to pay the bills to support my family, etc. And then it’s like, well, what do I do now stroke does that stroke, illness, whatever it is, takes people from identifying as they did the day before, to not knowing how they identify not knowing any more who they are.
Bill Gasiamis 1:14:24
And not knowing how stroke or how illness, you know, can be blended in and made part of life’s purpose or, or life’s lessons or life’s blessings. And it’s just a real challenging and battling and can lead to despair can cause unnecessary mental suffering and anguish and, you know, without applying appropriate meaning to it can lead to despair.
Bill Lee Emery 1:14:55
Yeah, and for me, and you’ll be familiar with this term. It’s an evolving thing. So, you know, my purpose or the things that I found meaning in my 20s, or 30s is different from now. And in my early 70s, you know, my purpose and meaning is very different from 20 years ago, there are connections and threads along the way. But we are human beings, you know, we are evolving, we’re not a static thing I’m not 20 year old anymore, I’m not a 25 year old anymore or 35, so, we’re always evolving.
Bill Lee Emery 1:15:36
And so if we allow ourselves to, to step into that, and to allow change, and to embrace what is there, and what’s coming up, that is, for me much healthier than hanging on to my identity as the CEO of an organization, or this or that, or an actor or an actress, or whatever it might be, you know, and I was just thinking you’re in, we’ve been watching a series on on Apple TV, and it really got us engrossed. And there’s a couple of older actors there.
Bill Lee Emery 1:16:14
And you know, the story about, you know, old actors in the 70s and 80s, watching the movie of them 30 or 40 years ago, when they were young and healthy, and, and pining for how they used to be, and staying in the past, rather than embracing the fact that there might be at and gorgeous, and old and wrinkly. And what a shame that we, we sometimes go back into the past got a whole wish, I was just like this, you know, I’m the age that I am.
Bill Lee Emery 1:16:43
And I love the age that I am, I’ll, you know, I’ll never be this age again, you know, tomorrow, I’ll be a day older. And so, but I’m really enjoying my aging body. Well, some parts, but you know, sometimes I wish I could swim a little bit more or whatever, etc. but you know, that’s part of me also accepting my aging, my mortality, and not to fight it, but to go, but to bless it.
The Three Things
Bill Lee Emery 1:17:16
What’s that saying about old age is something that not everyone gets to have. So, I’m here on this listening to my heart, I really love my body, we have a really nice time on the inside of us. I have a beautiful partner, we live in a beautiful part of the world, we have a gorgeous community that we live in, there are so many blessings in my life. And Julie and I, when we go for a walk around our village, here we, we often say.
Bill Lee Emery 1:17:49
Okay, three things, what are the three things that we’re grateful for. And those things helped me to remind, sometimes of the little things. Just the little things that can bring so much joy doesn’t have to be a big thing. It can be a simple, simple thing. But that, to me brings more richness than some of the big milestones in my life. I’ve got to appreciate the little things more and more and more.
Bill Gasiamis 1:18:17
Gratitude is part of meaning like it’s one of those things that it’s the antidote to despair. It’s what takes suffering and mental anguish and mental suffering, and makes it less powerful and less able to take hold, you know, being grateful for the fact that you have a just a flower, just the flower that you noticed, you know, when you needed to notice it, so that you could take your mind away from all the other stuff you’re going on.
Bill Gasiamis 1:18:50
And to have that trippy moment where you noticed your plants and you’re going wow, like that’s amazing. That that’s something that you can be grateful for, because he actually made it possible for you to occupy your mind elsewhere at a time when it was really important and necessary for you to do so. That supposedly insignificant flower not only gives life to you, but it gives life to us because of that bees existed because bees exist.
Bill Gasiamis 1:19:20
They pollinate other plants, and they give us honey and we learn from them and and then birds exist because of that, like the whole thing is not little it’s such a big thing of such a massive thing. And it’s the ability to have the wisdom to notice that little thing, which is not little it’s actually actually very huge, you know, and it’s so beneficial to you in a moment where you needed nothing else.
Bill Gasiamis 1:19:57
You didn’t need medical intervention. You didn’t need If you didn’t need we were intervention, you didn’t need naturopathic intervention, you didn’t need alternative intervention, you needed a flower to notice. So that it can take your mind off it. I mean, what a gift what an amazing thing to have. That serves us. Yes, just for the sake that it grew there.
Bill Lee Emery 1:20:26
And thank you, there’s one thing when I have my first PET scan, and it was five days before I had the results, I was almost like having a near death experience and my awareness was like on maximum. And, as I was going through this, and there was no ordinary guy, I began, wow, it’s almost like, I’m high. And I want to help everyone to hold on to that state of consciousness, I want to keep this with me forever.
Bill Lee Emery 1:21:02
And I know that everything was passed, you know, I won’t have that same heightened state of consciousness. But I was able to go, Huh, here’s one thing that helps me get back to that. And that one thing was focusing on detail, small, infinitesimal detail. And I can go into my garden, and there’s a crape myrtle there and it’s flowering. And there’s ths big bees and little bees.
Bill Lee Emery 1:21:31
And I can just focus in on the detail of every single pedal, and I’ll be back, not may be in the same way. But I’ll take tap back into that state of consciousness, or wonder of nothing else in this entire world, except for that little petal, that little bee, that little bee in that little petal in their little dance together, and the whole world goes away. And that’s kind of like this, you know, kind of trippy space. And I go, that’s it detail. It’s not the big picture is the detail of small, small little things that can be quite trippy.
Bill Gasiamis 1:22:10
And in that moment, you’re not depressed, nothing, there’s no anxiety, there’s no past, there’s no future, there’s just the moment the present, and it’s the most ideal place to be. In that time, it’s definitely that time, when you’re in the doctor surgery, you might be thinking about what you’ve done in the past, so that you can stop doing that, so you can support your future. And that’s okay. But when you’re in the moment in the garden, and that’s really that time where everything goes away, and you can just be and that’s it.
Bill Lee Emery 1:22:53
The bees going, Yup I’m just gonna be.
Bill Gasiamis 1:23:02
I love it, I love it. I’m gonna ask you one last thing, because it’s great to see you kind of being back in this space, I feel like not because of what you had to go through with your health. But it feels like there was a bit of a pause between what you were doing when I knew you, say 10 years ago.
Bill Gasiamis 1:23:27
And then the middle kind of stage and then what I know of you now that to me, between you and me feels like there was a little bit of a pause between what I knew about you and how I knew you were going about life. But I knew generally what you’re doing and what you’re up to and how things were.
Bill Gasiamis 1:23:44
And you made a couple of posts in that first post that you made that really, that kind of brought you into my awareness again, was the one that you made about the seven weeks of your treatment, and then the work that you’re going to continue to do which we spoke about the men stuff. And then a little while later, you made this post on Facebook. And it was really deep and meaningful to me.
If You’re Not Following Your Heart

Bill Gasiamis 1:24:12
And I want to unpack it a little bit. Because when I mentioned it, some people are going to think, oh, yeah, that’s deep. Some people are going to think oh, well, doesn’t really mean much. But when we look into it, we philosophize a little bit about it it’s really cool. And you ask this question. And it went, “If you’re not following your heart, then where are you headed?”
Bill Gasiamis 1:24:41
And I know that when a question like that is asked by you, it’s not just a surface question. I know that there’s so much more depth to that and I know exactly where you’re coming from. But can we unpack that a little bit if you’re not following your heart where are you headed? What does that mean?
Bill Lee Emery 1:25:02
Okay, so I’ll tell you when this quote came from. And this is when I just been involved in mBraining as we both are.
Bill Gasiamis 1:25:16
Which is multiple brain integration techniques, if anyone wants to know what mBraining is just Google it, perhaps by the book, it’s called using a multiple brains to do cool stuff, it is one of the most profound books you’ll ever read. That being said, go ahead.
Bill Lee Emery 1:25:42
Okay, so it’s by Grant Soosalu, and Marvin Oka. And so I was just sitting and meditating. And, the phrase just popped into my head. And it said, and it was a question of myself of myself. So if I’m not following my heart, then literally, where is my head, taking me? And when I’ve allowed my head brain, to rule the roost, to decide my direction or life, decide what I’m going to do.
Bill Lee Emery 1:26:20
It hasn’t been a happy ending. And my physiotherapist around about the same time, said to me, when, when someone who is standing with correct posture, you will notice that their heart is slightly ahead of their head. So we are structurally and biologically designed to live from our heart. So in our heart is deep meaning is core values is compassion, compassion, for self compassion for others.
Bill Lee Emery 1:26:50
And our head brain and our gut brain are both there to serve our heart. So if I’m not following my heart, and I’m following my head, I’m going to be going into the jungle. And I’m gonna be doing what angsting and more suffering than I need to. And when I go in and ask my heart, hey, heart, what’s going to make you sing what makes you come alive, what brings joy is going to, it’s going to go into that place of compassion, compassion for myself first, and compassion for others.
Bill Lee Emery 1:27:26
And from this will come my direction, purpose and meaning, and joy and all those and fulfillment and satisfaction. So for a lot of people that I work with in the corporate field, you know, they’ve been driven by ambition, you know, by an idea might be fascinating. So the head brain, the gut brain kind of got together and cleansed this, what are we going to do in life, and they’ve gone through three divorces, their kids hate them, you know, their bodies in a mess. But they’ve got all these material possessions. Nothing wrong with those things.
Bill Lee Emery 1:27:59
But when they’re taken in place of what brings the heart joy, for me, that is true. Suffering and despairing. So it was really a question for me it was, so Bill, you’re going to follow your head, or you’re going to listen to what your heart wants. And it was a reminder for me to come back and check into my heart is what’s what’s filling you with joy. And, and when, when I connect with this in my head brain can get really creative on how to what to do, you know, organize the logistics, manage, research, whatever.
Bill Lee Emery 1:28:42
And then my beautiful gut brain, which is around boundaries, deep core sense of self can organize itself on my actions to deliver those things that my heart won’t and when I mentioned before that you know me and my body have a really good intimate relationship. You know, my head and my heart and my gut have a beautiful relationship with a really learned to come check in with each other. How are you going? What do you need from me? And so we had this little happy dance inside of us and I know when my head is leading with something.
Bill Lee Emery 1:29:18
But if it’s disconnected, if it’s directionalized by my heart, that’s fine. But if it’s going on a little journey, all by itself, I’m going to be in shit somewhere along the track that I had to bring myself back to does my heart is this what my heart truly wants? Because my heart can be fickle. The fickle you know, when I go to Bunnings, for example, and we go for take my heart rate with because I’ll want this and we’re all gonna have this and my gut brain going well, do we actually need it?
Bill Lee Emery 1:29:48
You know, like, we’ve got three already, do we really need another one? I guess not. So but underneath the fickleness is the deeper things, the deep and meaningful things so things that are connected to purpose, deeper, evolving purpose, you know what brings meaning what brings satisfaction, deep satisfaction, not superficial stuff. And for me if you know, and this was really a reminder of, if I’m not following my heart, then Where am I headed? And for me, I need, I need reminders, you know, I fish around and stuff for a while, but I still need reminders. What does my heart want?
Bill Gasiamis 1:30:29
You’re not perfect.
Bill Lee Emery 1:30:34
Despite what I told you.
Bill Gasiamis 1:30:39
It’s been really lovely having this conversation with you and catching up with you after some time, I reckon about five or six years, at least. Getting to be around you and learning from you, as a wise elder that you are. Was really a pleasure at the time, you know, I got a lot out of being in a room with you, having you at my place, you know, connecting with you with other brains and that it was really good. The one thing that I remember about you that I loved the most was your hugs.
Bill Lee Emery 1:31:23
Yes, I have a bit of a reputation for that.
Bill Gasiamis 1:31:25
And best hugs ever Bill.
Bill Lee Emery 1:31:30
Yeah, and you know, why? So I learned to hug 40 something years ago. And what I learned, the secret of a good hug, is not gender related. It it’s human to human. And it is breathing the same air as the other person. And being fully in my body, in the present moment.,with nothing else, my internal dialogue would be always nil. And I just, and I breathe, and I’d feel the other human being in front of me close to me, and I’d feel my human being. And it just be to human beings enjoying presence together that’s it.
Bill Gasiamis 1:32:32
You know what that experience taught me? It taught me that I was keen to get out of a hug pretty quickly. I was just coming. I was just doing the old come in, get it get out. And I remember having to kind of having to stay there with you.
Bill Lee Emery 1:32:54
I wasn’t gonna let you go.
Bill Gasiamis 1:32:55
Yeah. And then allowing myself to stay there and then experiencing the hug. And then going, when we’re in a room in a training room, or coaching, or when we were learning together, then it was like, Okay, time for the hugs. And I was like, okay, straight to, Bill, go over there and get a hug over there. Because that’s the standard, you know, that we all need to aspire to.
Bill Gasiamis 1:33:22
It was truly an interesting learning experience that to connect with somebody, you know, you do have to be out of your head in that moment. You do have to be present. And you do have to make it about the other person, as much as it is about you, you know, has to be about the other person. And it’s interesting to remember one thing about something somebody who is more than, you know, one thing above all else about somebody asked for to be the hug.
Bill Gasiamis 1:33:57
I don’t know anybody else for the hugs, you know, I know some people for their terrible handshakes and some for their overbearing, hard handshakes. But the hug is it’s a really interesting thing. You know, it’s kind of, it’s the one thing that Zoom, when I interview people from all around the world. It’s one thing that Zoom doesn’t allow me to do and it’s the one thing that I’ve hoped that I wished I could do more. But you know, we have this distance, and we have all the stuff that we can’t get that Zoom doesn’t offer, but it’s the one thing you know, it’s like the one thing.
Bill Lee Emery 1:34:41
Yeah. And that’s like, it’s pure connection. That’s it.
Bill Gasiamis 1:34:45
Yeah. Bill, thank you so much for being on the podcast.
Bill Lee Emery 1:34:50
My pleasure Bill. I have to say I always enjoy being in your presence. We have a good time. together in for me doesn’t matter the years passing of how often we talk. It’s just coming back to that playful five year old space.
Bill Gasiamis 1:35:13
Yeah, I agree. Thanks, Bill. Thank you, Bill. Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after own experience with stroke. If you’re a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:35:40
The interviews are not scripted, you don’t have to plan for them. All you need to do to qualify is be a stroke survivor, or be a caregiver for someone who has had a stroke. Or be one of the fabulous people in the medical field that help people who are stroke survivors. Go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive it I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:36:16
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or 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 at 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 1:36:46
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Intro 1:37:11
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Intro 1:37:35
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1 hr 39 min
January 09, 2023 Neuromovement – Anat Baniel
Anat Baniel, the founder of the Anat Baniel Method, a powerful practice that takes advantage of the brain’s remarkable ability to change itself, for the better to heal body and mind.
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Highlights:
01:47 Introduction
06:26 The Two Main Pillars
09:46 Resistance To Change
15:38 Conditions To Activate Brain Functions
24:22 Proper Intervention
33:01 Safety First
52:39 The Variation Essential
1:03:08 The Importance of Enthusiasm In Rehabilitation
1:19:58 The Nine Essentials
Transcription:
Anat Baniel 0:00
You have rehab facilities for stroke? He said yes. I said the usual length of rehab is between three to five weeks. He said, yes. I said, you send away your patients at the point where there is no real detectable improvement, it sort of plateaus.
Anat Baniel 0:19
He said, Yes. I said, Now, the understanding of the reason for reaching the plateau, is the fact that the person had a stroke, correct? He said, Yes, I said, that’s where you’re wrong. And that’s where my work comes in.
Anat Baniel 0:37
The reason they need rehabilitation is because they had a stroke. The reason that they could reach a plateau is the intervention. They reached the outcome because of the intervention, and they reach that plateau, because of the intervention.
Intro 0:58
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:11
Hello, and welcome to episode 232 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview.
Bill Gasiamis 1:23
Please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Introduction – Anat Baniel

Bill Gasiamis 1:47
And if you subscribe in YouTube hit the notifications bell so that you can get notifications of new episodes as they arrive. My guest today is Anat Baniel, the founder of the Anat Baniel Method, a powerful practice that takes advantage of the brain’s remarkable ability to change itself, for the better to heal body and mind.
Bill Gasiamis 2:10
Anat is also the author of the book Kids Beyond Limits. And although marketed to parents of children with neurological conditions, be it from birth or as a result of traumatic brain injury. The book is rich in information that may help you while on the road to recovery after stroke.
Bill Gasiamis 2:29
Trained by Dr. Moshe Feldenkrais, and with high praise from people like John Gray, Norman Doidge, Arianna Huffington. And Jack Canfield, this book would be a great addition to your bookshelf. Anat Baniel, welcome to the podcast.
Anat Baniel 2:45
Happy to be here.
Bill Gasiamis 2:48
Thank you for being here. I’m probably three-quarters of the way through listening to your book, Kids Beyond Limits. And it’s interesting because the title of Kids Beyond Limits is I know, it’s been written for parents about their kids, but really, it’s also applicable to me and anyone else who’s had a stroke, or any other neurological condition that needs some new insights and new ideas, new ways of approaching recovery and healing the brain.
Bill Gasiamis 3:29
And also the other part of that which is like a new approach, or a different way of looking at healing the brain and recovering movement that was lost, etc. And I’ve got so many questions. But before we talk about the content in the book, which is so appropriate for my listeners, and people watching on YouTube, I’d like to ask you about how you got to be in a position where you’re doing the kind of work that’s helping people overcome neurological conditions.
Anat Baniel 4:08
Okay, so regarding the book Kids Beyond Limits I totally agree with you it’s about you know, how to facilitate for the brain to do its job when there’s interruption. Genetic or stroke, you know quite a few babies are born with stroke or gets stroke early on.
Anat Baniel 4:33
And then there’s the book for adults Moving To Life that you know, we’re actually going to publish soon a new edition so if people want to read about it in the more adult version, that’s possible. In a way it’s better for people who had a stroke, because it really deals with assault to the brain, Moving To Life is more in general how to enhance your life, not necessarily in the face of a traumatic brain injury.
Anat Baniel 5:05
So how I came to do this work, my training was in psychology, clinical psychology, I also have a degree in statistics, you know, because of interest also in the science side of things, but also always had interest in the brain. And as I was in my graduate studies you know, schooling to become a clinical psychologist, I realized that it was all very cognitive, it was very interesting, it was valuable, it served me my whole career.
Anat Baniel 5:53
And at the same time, what was missing for me was the immediacy of the body the immediacy of the kind of aesthetic experience and of movement that is so there for us all the time. And I search where I could study and I also made the about the brain, but there wasn’t much known in terms of actually impacting function directly thinking about the brain.
The Two Main Pillars – Neuromovement
Anat Baniel 6:26
So I then remembered my studies of Dr. Feldenkrais’ movement work. Moshé Feldenkrais as a child and with my dance teacher, so I found him and connected with him, and trained with him to learn his method. And his method, has two main pillars.
Anat Baniel 6:59
One is movement, the other one is the brain. So actually, he was a scientist, he was a, physicist and mathematician, and you know, so I got all what I was interested in, covered in one person’s way method. And I worked with him. And first I worked primarily with dancers and musicians, and academicians, because that was my world.
Anat Baniel 7:38
And Feldenkrais actually was the one who got me to work with the first child, I didn’t expect to work with children with babies. And in about a year or two parents started hearing about the work and the outcomes, and more and more parents started showing up.
Anat Baniel 8:05
So the children started taking more and more of my time, and the dancers and high performers became less and less. And then also, I started working with stroke patients, adult stroke patients. And in the process of doing that, I looked into understanding what about what I do gives the outcomes that the clients were getting, and they were getting really, in are getting really breakthrough outcomes. And, you know, we can talk more about that, but this was the path.
Bill Gasiamis 8:46
We will talk about that for sure. Because I think it misses things, sorry. A lot of recovery after a stroke misses some things that I think now that I’ve read, most of your book is obvious. Now that I’ve read a part is very easily missed during recovery.
Bill Gasiamis 9:12
My experience in recovery is you have brain surgery, you wake up, you can’t walk, you go into recovery, and the people trying to rehabilitate you, the personal therapists and occupational therapists, they do a fantastic job, they get you on your feet, and they try and reinstate what was there before using the same method that was being used before I was unwell and couldn’t use my left side of my body.
Resistance To Change
Bill Gasiamis 9:46
So they kind of approach it with the exact same tools that they would have if I for example, injured my knee, or my toes or my ankle. When the challenge is actually not my toes on my knee or my ankle, it’s my brain. And they understand Neuroplasticity to an extent. But they understand in a very simplistic and basic way, which is enough for a lot of people to get over the line and get decent results. But I think they missed some critical components, we’re going to talk about those in a moment.
Anat Baniel 10:25
There is a resistance to change. And the resistance to change is not just this way, there is it, the word resistance is the correct word, but resistance to change. Also, on a biological basis. If you look at us, we develop habits. And the habits, we need the habits, we can’t function without habits. And the habits get grooved in they get automated, and our sense of safety and a sense of predictability.
Anat Baniel 11:03
You know, uncertainty is very disruptive to our sense of well being. So, in the habits form very quickly, and very powerfully. And we can change the habits, it’s a big part of what my work does. And that’s a big part of Feldenkrais’ work was doing.
Anat Baniel 11:24
Because how do you get the brain to not just learn something new, but to transition from what it is relied on until today, to transition and rely on your left foot, or on your right foot, you have a stroke, and all sudden you can’t rely on it? And very, very quickly, the brain changes itself reorganizes itself, so that you look to be able to transport yourself to transition yourself from point A to point B in a safe way?
Anat Baniel 12:02
And it doesn’t want you to use or doesn’t let you rely on that which is not reliable, and for good reason. But that becomes a very powerful habit very quickly. And because of that it’s so important what’s done immediately after stroke. And the kind the way that rehab is done is so important, because it can instill limitations very powerfully due to the way that the rehab is done.
Anat Baniel 12:36
And that’s the place where there’s in my experience, complete blindness and we can talk about that because it’s simple. It’s actually very simple. But it’s different. I was interviewed on another podcast last week. And at the end of the podcast, the interviewer said to me something that I never heard before in this way, and it was a wonderful, he said to me what you offer is very counterintuitive. And makes total sense. He said, and I never had those two things happen at the same time for the same thing.
Bill Gasiamis 13:18
With would completely agree. Absolutely 100% agree with that statement. And the reason being is because you talk about things that most people miss. And one of the things that you talk about is movement with attention. So we’re going through therapy, and although perhaps I’m in rehabilitation, and somebody’s paying attention to my movement, I am not being made aware to pay attention to the way that I’m moving and the way that I need to adjust my movement, right?
Anat Baniel 13:55
No, no, you’re missing something. I’m so sorry. And everybody needs it. And when I teach a training or a workshop, it takes three days of we been engaged in the process before people start really getting it. It’s not the attention to the instructions. It’s not even so much that attension to what you do you know, lift your arm you know, whatever.
Anat Baniel 14:19
It’s the attension to watch you feel as you do the movement and that is a huge job and that is the job that got Dr. Michael Merzenich to become a huge supporter of my work the rest of it to all the nine essentials and his research that we discovered because the one I knew it I made it my essential but when I wrote my book by colleague Dr. Neil sharp, I said to him can you go out and research to see if anyone in the research universe in neuroscience research has realize that movement, without attention to the feeling of self as you d, it does not provide change, or very limited change.
Anat Baniel 15:13
And if there’s an attention to the feeling of what is done as it is done, changes happen, improvements happen, the range of motion increases, spasticity reduces by the fact that it gives the brain information to improve what it’s doing the intention that it’s executing, as it’s executing it.
Conditions To Activate Brain Functions – Neuromovement

Anat Baniel 15:38
And this feels so weird, you know, it’s like, I don’t have to go 1 2 3 or stretch it or put electrical an thing, you just have to activate the capacity of the brain to feel, to notice the sensation, the feeling, because without it, we can direct ourselves anyway.
Anat Baniel 16:00
And that’s my main essential, that’s my first essential because movement, first of all, is my jewel. And I say that movement is the language of the brain. But then the question is, how good are you in speaking it or use it to communicate with the brain intentionally?
Anat Baniel 16:20
In the conditions and I should have brought it there’s a quote, where did I see? Oh, yeah, oh, yeah, I know where saw it. I can look for it in a minute briefly. If you provide the brain, the conditions that the brain needs, the conditions, that under which the brain functions well, then you get a brain that can learn and change in ways that otherwise it can’t. And when somebody had a stroke, we need to try and really optimize those conditions with which how we provide the interaction to the other person.
Bill Gasiamis 17:31
So practically, with regards to movement with attention, if I’m putting my foot on the ground, for the first time after my brain surgery, is the part when I’m putting my foot on the ground, and I’m paying attention what it’s giving me back what kind of feedback I’m getting from the ground or from the underneath of my foot. What specifically do I need to pay attention to?
Anat Baniel 17:58
Okay, so yes, but it’s a little more refined conversation, and there are important elements here. Okay. So let me just say a few general things that will then what I say can fit into it, okay? Because it’s a shifting in understanding, okay? The brain is an information system is a self organizing system, it’s a holistic system, when I move now, my brain has to come to every part of my body.
Anat Baniel 18:40
If I’m sitting like this, and I’m completely into something, and I’m totally safe, and I can maybe move this and not really care what happens to the rest of my body because it hasn’t impact my relationship to gravity. But if I’m standing up, I better know, if I move my arms forward, or otherwise I’ll fall on my face, right? So the brain is and it’s very complex, it’s very dynamic.
Anat Baniel 19:09
And it’s just they’re going back and forth you know, like, in it is the thing that gets us be who we are and organizes everything we do, right? Why am I saying that? In a minute, we’ll talk more about the essentials. But when somebody wakes up from surgery or just from the stroke, not everybody gets surgery after stroke.
Anat Baniel 19:42
And all sudden, your right leg doesn’t do what you want it to do. Right? The tendency or the arm the tendency is to try and interact with the parts that are not working like the arm or the leg. The most affected parts, which means are the parts of the brain lost most of the connections.
Bill Gasiamis 20:14
Yes.
Anat Baniel 20:15
That’s the parts of everybody zeros in.
Bill Gasiamis 20:19
Yes, correct.
Anat Baniel 20:20
That’s the last part I will touch. Think of it in terms of the whole body and think of a baby, a newborn. Every part of their body has twitches and stuff, but they’ve no voluntary movement, the first place that comes into voluntary control is basically the mouth tongue, the sucking actions, eyes, kicking, necks by the way.
Anat Baniel 20:50
But the child does not get really an ability to do much with the arms or the legs, like standard walk before, there’s very significant control of the center of the body. In very complex relationships, so I have now a granddaughter, she’s seven months old, I just got a video. And you know, I couldn’t even show it here, I can just put it up and show it. And you see she’s now holding objects, and she’s moving them and looking at them.
Anat Baniel 21:26
But the biggest thing she’s doing is rolling to her belly rolling through her back, rolling to her belly rolling to her back. And magnificent way that she does it, the arms and the legs are still kind of like the outcome of that as she gets more and she gets to sit, and stand. And I got my daughter to absolutely not do tummy time with her.
Anat Baniel 21:53
This is one of the again, another huge mistake in people tried to control an outcome before and skipping the process that leads to the outcome. So I’m talking about the process that leads to the outcome, I get somebody who had stroke one of the things that they will do first is go to their pelvis, their back their spine, because it’s much easier to recover.
Anat Baniel 22:24
Because let’s say, if somebody had a right side stroke, the left side, you know, the whole left side is impacted. But because there’s much less differentiation, there’s less density of mapping of the center of the body in very dramatic way, if you go and look at the homunculus, the sensory homunculus or the motor homunculus.
Anat Baniel 22:48
You know, the arms and hands are huge, and the thumb is enormous and the tongue is enormous. And then your tiny little fingers, the pelvis and a tiny little thing, that’s the back. So the lost proportion is much smaller, to recover function there is a lot easier.
Bill Gasiamis 23:08
Okay, so to give you an analogy you’re working with our strengths and not our weaknesses.
Intro 23:19
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 23:44
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Proper Intervention – Anat Baniel

Anat Baniel 24:19
Very much so but to understand the thinking. I say do not try to make somebody stand up when they lost their ability to stand up. Just like you will not take a three months old baby and try to make them stand up. And by the way, don’t do it with a nine-month-old either because if they don’t do it spontaneously, it means they’re not ready. They don’t have the underlying neural networks to perform it well enough.
Anat Baniel 24:50
So I’m working on helping that brain recover and it can’t go back if these are lost connections Since there are two things here, there are lost connections in their loss net networks, neural networks. Because the neural network is a lot bigger than a bunch of connections, you see, the motor cortex is associated the sensory which associated to the visual, which associated the large centers of the brain.
Anat Baniel 25:18
So but if you’re feeling nothing in the network, t he whole network is off. So if you bring back elements of the network, we just had been working with a 17 year old she had a tumor in her brainstem, which is like not a good place to get a tumor but anyway, when she was two years old they did a surgery and removed it.
Anat Baniel 25:47
She’s been getting therapy for 15 years. She’s 17, she’s by the way, the most potent or one of the most potent learners I’ve ever worked with. But she presented herself terrible kind of standing, but has two people to support her from the back, and she’s more spastic on the right side.
Anat Baniel 26:15
And her speech is (slurring) kind of like that. And it happened very young. So of course, in terms of schooling and everything got severely interrupted. So people also way underestimate her intelligence. Just two weeks ago, she has had a total of six weeks of sessions with us two weeks, and then they went back, they live in the other, you know, on the east coast, they came back for four weeks now.
Anat Baniel 26:44
So four-ish weeks into her thing. I and she couldn’t sightsee to one side, and, you know, can’t control. And, of course, we’ve already been me and my team, most of the work was done by my team, I had her on the floor, not on the table and I had her start doing a rolling movement through the side, in a way that a child, a young child tends to do it around age one and a half years to two years. I mean, that’s usually when they get that really well.
Anat Baniel 27:24
And very slowly, with the essentials, and at a certain point, she could just do it, and perfectly and quickly and very accurately in terms of the timing of what bends when and the way, the relationship of her head to the pelvis and the whole thing. And it was like, Whoa, it’s like her brain recognized it.
Anat Baniel 27:48
She did it until she was two or something like that. But she had no access to it. But when enough around it was built was recreated, reinvented by the brain. The whole thing came in. And we see that depends how much destruction there was. But I’m saying so much stuff. I don’t know if people can follow that. But the point is, you start where the person is, if the person is the person who had stroke or brain surgery, or brain surgery after stroke is not able to stand themselves up.
Anat Baniel 28:36
You might have to them up for medical reasons. There was another 26 year old woman friend of mine, a female athlete that had a horrible she did like a performance on bicycles mountain, and just smacked her head terribly, and so on and so forth. And, because of the drainage that they wanted the swelling, they needed her upright, then support her fully and hold her up fully, but don’t ask her to stand. Don’t expect her to participate, right? And you start working lying down because we learn to stand up line down.
Bill Gasiamis 29:21
You explained my whole experience with the right side, brain damage and then the left side deficits. It’s exactly what happened. And one of the first things that happened to me, which was extremely uncomfortable and really frightening, even though I went through the motions because I was told that that’s how I needed to be rehabilitated, was I was attached to the harness which was attached to the ceiling and I was like a puppet.
Bill Gasiamis 29:51
And that’s really uncomfortable in the crotch. And then I had one person on each side of my body moving my left leg for me into the position and into the right, and then the right leg and so on. And it was really, I have a photo of it, it was such a weird experience to be harnessed to the ceiling.
Anat Baniel 30:12
And did you find it helpful? Were you able to start standing better afterwards?
Bill Gasiamis 30:17
No, that took another two or three weeks for the standing to happen. That was probably two or three days after surgery, but the whole time, I needed to be the person who supported myself, because then they put me in between the two parallel bars, the two horizontal bars,and I had to hold myself up with the left side, again, of my body on my arm, which wasn’t working properly, the whole thing was completely dysfunctional and not really comfortable. And it was really scary. And I was afraid I was going to fall and my fear was getting in the way of my excitement to be there. And to participate in my in my own recovery.
Anat Baniel 31:10
I want to say that between doing what went through and doing nothing. I think doing what you went through is absolutely the thing to do. Correct. So it’s not like, Oh, you shouldn’t have done the rehab that you did. And it’s very important to say that. I mean, if you were just left lying down, I don’t want to even think what it would have been like.
Anat Baniel 31:41
However, we’re talking about the future. We’re talking about possibility. The same people that gave the dedication, you know, they learn to do this that give their time. And there’s the funding for it and the institution, that whole thing can be upgraded in a quantum way.
Anat Baniel 32:06
And that’s what I’m after. So it’s not about bashing what the people or what is being done. Even though it might sound like I’m doing that, it’s not that, it’s my passion is about it’s kind of like, if you want you need to get from the East Coast to the West Coast, you want to visit your family or to go something important.
Anat Baniel 32:35
But you only have a horse and the cart. And there are no roads paved. So we don’t want to do the horse and buggy version of crossing from the East Coast to the West Coast. We want to take the version of the you know, really good airplane to get us there.
Bill Gasiamis 32:56
The upgraded version, and that’s exactly it in order to feel safe.
Safety First – Anat Baniel
Anat Baniel 33:00
It’s more than an upgrade, it’s transformational. And by the way safety is most important, and you were obviously able to benefit. I work a lot of people that really didn’t. And because we’ve been working on a research proposal on stroke, we have studied the field, you know, and we haven’t looked at it for two years, you know, COVID kind of stopped everything.
Anat Baniel 33:32
So maybe there’s more stuff that we’re not aware of, but the statistics of success and failure in recovery from stroke. And, of course, what is considered success, I wouldn’t call it success. But the rate of success is really, really, really low. I mean, people don’t get back to being independent and functional in a sufficient way. You’re doing very well.
Bill Gasiamis 34:03
I agree. In order for me to feel safe. I asked to do my rehabilitation in a swimming pool. Because I didn’t need to be attached to the ceiling. And I didn’t need to be afraid of falling over. And it was a real godsend.
Anat Baniel 34:20
So you asked for what?
Bill Gasiamis 34:23
Rehabilitation in the swimming pool.
Anat Baniel 34:25
So you just did it without being hanged from the ceiling.
Bill Gasiamis 34:29
Yeah, I was in the swimming pool. The water was supporting my weight.
Anat Baniel 34:32
Oh, that is the best thing you could have done. Fact is we say that in my work. If I could do it all in water. Everybody will get better faster.
Anat Baniel 34:43
Yeah, right. Okay.
Anat Baniel 34:44
You take it with a gravitational demand. You see, lying down is the closest approximation to removing the demand that the gravitational field puts on the body in terms of balancing everything. So This was brilliant. I mean, this is actually, we used to have a petitioner that I trained, that did work in the pool with mostly with children. So we used to send our clients to also work with her. Because it is like the optimal conditions initially in the rehab process. I mean, it’s fantastic.
Bill Gasiamis 35:26
It worked, it was disarming, I was able to become a very different participant, a very different patient in that swimming pool compared to the one that was outside the swimming pool. I didn’t have the words to describe what you just described, about enhancing the methodologies used right now to rehabilitate people.
Bill Gasiamis 35:52
But that’s what I felt when I’m reading the book, when I’m listening to the book, I’m, I see your nine essential steps towards supporting somebody in their recovery. And, you know, we’ve already spoken about movement with attention, essential one, but essential two going slow, even though I was asked to go slow, there was an emphasis put on the benefit of being slow because I wanted to get better quick, I wanted to recover fast, I wanted to get out of rehab quickly.
Bill Gasiamis 36:28
So when they were slowing me down, which was an amazing thing. Now I understand it’s an amazing thing. I was getting frustrated and annoyed. Because they wouldn’t let me walk on my own sooner. And it was like, you say it’s not safe for you, and you’re not there yet. And they just didn’t emphasize certain things that they were doing. And I’m not sure whether they deeply know the benefit of being slow.
Anat Baniel 37:00
The being intentional. And a lot are not asking to go slow. They’re asking to go fast.
Bill Gasiamis 37:06
I yes you know, what they want you out of there quickly, because it’s a public system, you’re filling a position. And they want to make sure that they can get the next person in, and there’s not a big wait etc. So, tell me a little bit about, you know, the benefits of slowness, and being intentional.
Anat Baniel 37:25
Let me say something that maybe will make it very clear right away. Fast, we can only do what we already know. That means the connections are there, the myelination is there, the signals golf quickly, you know, the electrical signals move quickly. In the beginning of something is new, it’s not grooved in yet what we say grooved in which means the, the neurophysiological process of creating the connections and the communication between the cells that can go fast.
Anat Baniel 38:05
So when somebody has a stroke, a bunch of those communication channels are gone, right. And you need to create new ones. But when you create new ones, if you put the burden on fast on the new thing, it gets inhibited. And it reverts to what’s there. And what’s there is the way you show up after you had stroke, that is the existing things that you have whatever is left over.
Anat Baniel 38:39
And, one of the things that kicks in right away is spasticity. And in spasticity is the result of loss of differentiation of loss of connections. So things deceives the baby when it’s born, it can only do this or this with the hand it’s either all flexion or letting go flexion letting go it doesn’t have this this is billions of connections, billions upon billions of connections to be able to do that.
Anat Baniel 39:09
Okay. So so you get smacked on the head, blood whatever. And you lose those connections. When you give the intention it activates what it knows but the whole area that has been affected can only do one thing it is not differentiated anymore more we need to work on differentiation I just said she’s became a very close friend Jill Bolte Taylor, I’m sure you know the name.
Anat Baniel 39:41
And she did my training and she wants my work to get out and anybody emails her just she says go to Anat go to Anat do the Anat Baniel Method. And we’re all experiencing the the difficulty to bring the novel way of thinking the novel way of practicing rehabilitation into the world. And, she says to me Anat it’s all differentiation or bottom line it’s all differentiation, I said, Hello, good morning. You know, that’s what I’ve been telling her enough for, I don’t know, 8-10 years.
Anat Baniel 40:17
So what happens when you go fast? You get the outcome on your attempt to go fast, you get the default of what’s available, what’s available is specificity. And then guess what the brain group, you know, learns its experiences, that becomes the patter. That’s why I said to the head doctor, a bunch of years back of all the Kaiser, you know, medical system. And I was invited to speak to him privately in a dinner by another doctor to explain to him my thinking about brain change, and its relevance in medical intervention.
Anat Baniel 41:08
And I saw that he wasn’t quite groggy or whatever, so I asked him towards the end, I said to him, you have rehab facilities for stroke? He said, Yes. I said, the usual, let’s just talk about ischemic stroke. I said the usual length of rehab is between three to five weeks. He said, Yes. I said, you send away your patients. At the point where there is no real detectable improvement. It’s sort of plateaus. He said, Yes.
Anat Baniel 41:50
I said, now, the understanding of the reason for reaching the plateau. The reason for that is the fact that the person had a stroke, correct? He said, Yes, I said, That’s where you’re wrong. And that’s where my work comes in. The reason they need rehabilitation is because they had a stroke, the reason that they reach a plateau is the intervention. And that is, now they reached the outcome, because of the intervention. And they reached the plateau, because of the intervention.
Anat Baniel 42:33
I said, you shift some of how they do what they do, you will have a completely different trajectory of outcomes. That is what my work is all about. And that is what my vision is all about. So slow is important. Because it allows the person to feel, it gives the time and the space to feel what is going on that goes into movement with attention to what you feel. So if you ask somebody to move fast, or you move fast with them, you kill off the ability to do that, for the brain that are the conditions.
Anat Baniel 43:20
That’s what Michael Merzenich realize when he says in the foreword to my book, that how surprised he was to find me coming from a completely different direction. Defining the same understanding of what gets positive neuron, you know, branch age to happen is 30 years of neuroscience research, except by combining those and bringing it to rehab is a whole other story, which you’ve talked about.
Anat Baniel 43:52
So then I want to mention a couple other essentials, because it’s so quick to once you understand that you want the brain to perceive differences, because it’s one way perceived differences. That’s the information. The brain is an information system. It’s not a mechanical system. Stimulation alone is not information. Stimulation is required for there to be information. The brain generates transformed stimulation into information, it can work with by perceiving differences.
Anat Baniel 44:33
So if you move me really fast and hard and it hurts, and I’m afraid I’m gonna fall, I have no idea that brain is very global, undifferentiated chunks of information, which he says I’m in danger. So you hold your breath you stiffen your chest your arm gets more spastic something may happen and maybe you got your son into water. I mean you’re like in any intuitive genius, because this is brilliant. Now, next essential, reduce the force.
Anat Baniel 45:12
Because it’s a physiological law. This says it’s Weber-Fechner law that in order to perceive a difference, or perceive an increase or decrease in the intensity of a stimulation, the more the base stimulation is intense. The greater in a logarithmic equation, that means it’s like this, it just jumps up. So when it’s this stimulation is very faint, not so faint, you don’t perceive it but very faint, you need very little edit stimulation to notice the difference.
Anat Baniel 46:01
So if you’re in a dark room, and somebody puts just a little bit of light, you notice, you turn the flashlight on, you jump, right. But if you are in full sunlight, and somebody behind puts a flashlight, you wouldn’t know it happened. It happened but you wouldn’t know.
Anat Baniel 46:23
If you’re talking to somebody, if there’s a very light sound around you, like party, you were in a party and people drink usually when they drink, they get loud, you sit in a restaurant, you can’t hear what people say, because it requires for somebody to scream and God knows what level right and at a certain point, it just doesn’t work, you just don’t perceive it.
Anat Baniel 46:49
And that is really really a huge deal. Because once people have a stroke they get spastic, the spasticity itself is already very, very intense. So I put you lying down, I support your head. And I do not activate, I look to avoid activating the spasticity, because let’s face it, you will reduce your sensitivity. And then the whole exercise from my point of view is ridiculous, and a waste of an opportunity. So I leave your spastic arm, I leave your spastic leg, but I go and I just move your chest in certain ways that doesn’t require much differentiation.
Anat Baniel 47:41
And I just have taken note, there is a documentary about my work called A Life Unbound. First half is about a small child. Second half is about a 27-year-old young woman that had a stroke. And she, you know, aphasic and stuff, beautiful gal was a cheerleader for the NFL, sort of an athlete, terrible stroke, and they didn’t discover her for 36 hours. You know, so massive damage.
Anat Baniel 48:17
And she came when she was done already with the rehab. And in the very first session I did with her. She went with her father, they went to the hotel. And it was the first time that she felt her chest and her face since the stroke I didn’t even know that, I don’t know what the outcomes are going to be. But I start talking to the brain and go “look, look, you could do this, you can do that.” So reducing the effort. Now they’re hanging you from above.
Anat Baniel 48:53
You’re not a bird. So your whole life, everything is from the bottom up the baby’s like flat on the ground, then it rolls then it starts distancing itself from the ground until it comes to standing. And of course it’s an all four so it has four points of pressure, and then it comes all the way up. And it’s the information from the feet that the brain uses to balance you not information being hanged.
Anat Baniel 49:26
So this alone, I mean, it’s a variation of movement is okay but not as the basis. So reducing the effort in the force, in the movement itself is so important. I will not try to get somebody who had a stroke or any other kind of TBI to regain function in an upright position or semi upright position. I will get the brain to start restructuring itself, rebuilding itself or reorganizing itself from its line position.
Anat Baniel 50:03
And the most comfortable line position, which is on the side, bent more like a embryonic position. And that’s why I said water is so great because it’s supported from all directions, almost all directions, you don’t want to drown, and then comes variation. And variation is magical. Because people know what you lost. So they asked you to do the thing you lost. You can do the thing you lost, because if you could do it, you’ll do it.
Anat Baniel 50:39
I may start this insane thing. But this is how you would learn. Because if I don’t tell you what to do, did you tell a baby how to do all the movements? Of course no, you don’t, it’s the organic progression. So variations is such a rich source of information to the brain, intellectually, physically, emotionally. So if we can do something, one of the things that I do with people is have them fail on purpose in many different ways.
Bill Gasiamis 51:16
Say that again, fail on purpose in many different ways.
Anat Baniel 51:19
Fail on purpose in many different ways. I worked in the beginning, before I started doing so much work with children. I worked with some of the world’s best known classical musicians, conductors, wellness, players, you know, pianist, hall orchestras, I worked with the San Francisco orchestra, I worked with a Tanglewood Music Festival and their orchestra and some Seiji Ozawa, I mean, you name it, they worked with these people.
Anat Baniel 51:53
And not many of them are brilliant musicians, but they were trained, not following the essentials. They were supposed to hold the violin a certain way they said, so they developed repetitive injuries and so on. And I worked with a member, Chelsea a British brilliant cellist that could hardly play anymore. It was entangled. And I had only 20 minutes with him. It was a demo. So I set him down. And I did it also with a very well known cellist in a quartet, a very well known European quartet, I did a similar thing with him.
The Variation Essential – Neuromovement
Anat Baniel 52:39
I had him take a very, very simple kind of music, you know, like, Twinkle Twinkle, Anna Magdalena Bach thing that he wrote and I just take a phrase and they’re brilliant musicians so for them that alone is a huge variations because hey, I can play Schubert I can play this I can play that.
Anat Baniel 53:01
You know, I go I know you can, but we’re going to do this, you see, reduce the effort, reduce the intensity, and I had him hold the cello. But with a ball, imaginary ball, so he couldn’t really do the movements, right. And you activate the imagination, which is of course one of my essentials. And then I said to him just feel like you really loved it and just the German guy I said to him play it raw. And it was nothing he could play then he had pain here.
Anat Baniel 53:39
And then I said to him, play it badly. At first he couldn’t grasp what I told him because since he was a little child, he was always taught played a certain way to play it correctly. I said play badly. And he just couldn’t do it. He was so rigid. And I said do you teach little children to play the cello? He said yes. I said do they play badly sometimes? He said sure. I said Do you remember any of the badly played things?
Anat Baniel 54:11
He said sure. I said imitate it, so he did he played it badly. And then I asked him to play badly the second time a third time fourth time. While he was playing badly I did all kinds of movements a lot of different differentiations variations with the shoulders so he really played badly because he was holding the ball. The young guy didn’t even bother boy does something different.
Anat Baniel 54:34
But anyway, so it went like crazy. And when I asked him to do the fifth badly way, he couldn’t think of anything I said that’s okay 4 was good enough. So now just play. Two things happened. The pain was gone. And it stopped him from playing. I mean, he was afraid he was losing his career. You and the sound the tone was so spectacular. I heard it, he heard it. He was like stunned. Variation the brain needs elements with which to work to put together the thing you’re trying to accomplish,
Bill Gasiamis 55:23
I understand exactly what you’re saying I just me, re expressing it back to the audience in my own way is very difficult. But I know what you’re saying I came across many, many years ago, an artist who had lost the ability to paint because the because you’re describing with the cellist exactly the same problem that the artist had, for an entire lifetime, the artist was using their hand to paint and put ink on a piece of paper or canvas a certain way every single time. And what they discovered after many, many years was that there was some kind of a tremble in the hand, which was not the type of tremble that your associate to Parkinson’s or anything like that, because it wasn’t in any other part.
Anat Baniel 56:20
That’s what happened to real Fleischer, I worked with him. I mean, that’s what happens to a lot of musicians that have Sunday have involuntary spasticity. And yeah, I mean, I worked with hundreds of musicians. Yeah. Men. And, and it’s the biggest mistake in teaching music. You imagine you take a child, tell him to hold the violin, you say all it this way, now hold it this way.
Anat Baniel 56:43
Now, put it a little here, make it a little uncomfortable, not try to play this way now tried to play these will not lie on your back. And I worked. I mean, I was asked to do it professionally. But it wasn’t I didn’t have passionate about I work with golfers. I did a few things with golfers. And I just had them do. It did also move a whole movement lesson on the floor, I really needed to get their brain to just wake up and start operating on a higher level.
Anat Baniel 57:11
But then, because the brain itself when you give it the essentials becomes that’s what merzenich wrote, you know, in the back of my first book, he wrote that my work helps the brain become a stronger, better brain that does its own job better and its own job is to learn is to put things in a way that they weren’t there before.
Bill Gasiamis 57:36
Is it to find many, many different ways to get the same outcome. For example, the painting using the brush.
Anat Baniel 57:44
In many different ways to execute the same intention.
Bill Gasiamis 57:47
To get the same result?
Anat Baniel 57:49
Not to get the same result. We don’t control the result. We try to execute the same intention, in different ways. And I’ll give you a bigger extreme. My father, I just my book moving to life was just published. My father was a brilliant researcher, right. And there was something that if they build a whole plant to produce the thing that he invented.
Anat Baniel 58:20
And they had a big problem doesn’t matter the story they but something was happening that they didn’t expect. So that my father was sitting on a computer trying to resolve the problem, right? Chemists, and he’s working and he calls me he says I sat for two hours and I could not figure out a way to solve this problem. But he said, but I just read your book.
Anat Baniel 58:44
And I thought about the variation essential. So intentionally. He said, Oh, let’s try this. And he knew it wasn’t going to work. You know, sometimes when you’re big expert in something, you know, he said, but I took myself through the process of failing. He said in 10 minutes, I have the solution.
Anat Baniel 59:07
That’s how extreme it is, you can know it’s not gonna work but by the fact that you give yourself the experience of the process. Because in the process of failure, they’re always useful elements for success? So you create, you generate a lot of mobility and freedom and options for the brain to integrate from those different approach to create something new.
Bill Gasiamis 59:37
It’s like Edison. The story about Edison failing 9999 and then learning the one.
Anat Baniel 59:45
Yeah and the good thing is that most of the time you don’t have to fail 10,000 times. You really don’t. I mean, this will 70 new role, or the mother of my friend it’s heartbreak but you know, they were trying to spend her up, but not just to get the drainage, but they were doing it it’s part of physical therapy.
Anat Baniel 59:45
And, it’s devastating because if she knows what’s happening to her, she’s gonna be traumatized realizing how much she is lost or believes she is lost. And if she’s not getting what’s happening, what are you doing? And so I gave her the courage to stop it. And she’s not a practitioner, but I showed her on Zoom, very gentle few things, she couldn’t touch anything around the neck and you know, too much injuries and stuff.
Anat Baniel 1:00:37
But to do some very simple things around the chest and the pelvis in the feet, because the feet it reflects in the brain so much of what he does, when we walk in standard and so on, imagine an athlete she has more than most people. And I told her to do it so she could feel whether her daughter feels there’s a way to know if when you touch somebody, they’re feeling it what I call movement with attention.
Anat Baniel 1:01:15
And I said, then don’t do more than seven minutes at a time. Because if it’s not helping, don’t exhaust her system. And if it’s helping, don’t exhaust her system. So you see, that’s another thing, don’t exhaust people and let them sleep. That’s Jill Bolte Taylor, her mother, a big part of what worked is because she’d let her sleep and then little units you realize, when she’ll start little units, that was like ingenious on the part of her mom.
Anat Baniel 1:01:46
So she did that, in the next day, the girl was able to stay and hold up in a hurry to her head. Not 10,000. Now does she need a lot more for recovery, of course. But you see real change the girl that I don’t do that now they’re going home for a month, and they’re going to move for a year to be next to us, because we want her to catch up on because she’s brilliant. I said, this girl is so intelligent. And she grew into being very limited, because people didn’t see that she was intelligent, because she couldn’t respond to the way they were trying to help. You can hear I’m just crazy passionate about this.
Bill Gasiamis 1:02:29
I can. That’s why I’m letting you talk and for people listening, this is going to be a podcast that you have to listen to again, and you have to actually get the book because the book is extremely well written extremely succinct, and to the point and I get so much out of it. And, that’s why I am a bit in awe, and I’m a little bit overwhelmed at the same time because I’m learning so much. But we’re only spoken about three of your nine essentials, we’ve spoken about movement with attension, about being slow about variation. And we don’t need to talk about all of them.
Anat Baniel 1:03:05
And the reduction of force reduction.
The Importance of Enthusiasm In Rehabilitation

Bill Gasiamis 1:03:08
And reduction of force. But we don’t need to talk about all of them. However, I want to definitely talk about enthusiasm, because this is something that can be lost on survivors of stroke or traumatic brain injuries when they’re going into rehabilitation situation because there’s, like I was in a little bit of fear. I wasn’t enthusiastic about being hung up.
Bill Gasiamis 1:03:37
And, being rehabilitated in the form of a puppet. Although I understand why people were doing it I don’t have an issue with the way I was rehabilitated. But reading this, I see the missed opportunities that could have potentially been there. So tell me about the importance of enthusiasm and not just of the person going through the rehabilitation, not just the patient.
Anat Baniel 1:04:04
Okay, let me tell you what I mean, when you say ASAN, which really goes with the whole idea that the brain is perceived differences and the motional relationship or the relationship between learning and emotions. Okay, that’s really the essential that kind of like, really, that’s what’s behind it. So we reduce the force, we slow down, we focus on what we feel as we move. And then we notice that I’m just giving you an example. It’s just an example. That yesterday I could only move my arm this much rotated, let’s say, and now I’ve done this and often it rotates this much.
Anat Baniel 1:04:57
Further, and maybe lighter, always When it goes like that better, it’s lighter, easier, more pleasurable, that always happens, there’s the way that the brain goes like check like it works well. But I need to do this, I don’t know, for tennis for something. So I’d go like this. But because it’s not the whole thing, I’m going to either not notice it or not give it importance. The brain gets gazillions of units of experiences every day, right?
Anat Baniel 1:05:34
But some things get memorized. You know, or grooved in very quickly. And other things just like dissipate, right, they don’t release stay. One of the ways, there are two ways that are very clearly the way the brain goes like, this is important in the neurophysiological processes of grooving it in very quickly.
Anat Baniel 1:06:02
One is when it’s really dangerous, or painful, or scary, that it compromises our sense of safety. Okay, the other one, when it’s really great, really pleasurable, distinctly better than anything else until that moment, positive emotions. So both of them have a lot of power, the negative has actually more power because it’s like survival.
Anat Baniel 1:06:32
When something good happen, and you go and you amplify, do you let yourself feel enthusiasm. And the best place to start practicing enthusiasm is maybe a little bit outside of yourself. So you go to the grocery store, and the checkout person is a has a nice buckle on their belt.
Anat Baniel 1:06:59
And you go like, Oh my goodness, I really think this gorgeous, and maybe you even tell them or, or I mean, you just let yourself be an amplifier of the positive and the seeker of the positive not Pollyanna, not denial kind of nonsense. But a sick. And the my students that improve the fastest are the ones that get most kind of that ladder of well being.
Anat Baniel 1:07:35
Now the story comes, I worked with this little girl she was diagnosed really, really bad. She had real ish stuff with a brain, okay. She changed every lesson. And of course, the practitioner, the more the practitioner can feel subtle changes, the more powerful and useful they are to their client.
Anat Baniel 1:08:08
Because if I work with you, and you’ve changed just a little, and I don’t notice it, and I keep going as if it didn’t happen. Missed opportunity. If I notice it, and I go with you, you notice that you go with me, I noticed you go with you. And we’re running forward together, right? So but it’s not like oh, yeah, you’re great because that externalizes I want the experience to be internal.
Anat Baniel 1:08:35
So it’s very quiet, it can be totally non-verbal, we train parents to not say good, yes, to just feel it inside, because one of the parents would bring her and every little change, got them to feel hopeful and grateful and happy. They saw that is going the right way or possibility. The other parent actually had the reverse reaction basically, because the changes were so “small” but they got despaired.
Anat Baniel 1:09:21
And I started noticing and then I noticed it also other places. So I realized it’s real it’s not just me fantasizing. I realized that when she was with one parent, everything she changed really fast. I mean, the progress was just the other parent it was like with clay. And after a while, I asked the one parent that felt good about the process, the little changes to be the only one to bring her two years until that the changes were so significant that it didn’t matter which parent came.
Anat Baniel 1:10:01
I mean, she’s arrived, at such a place that it was fine. And I’ve had it with other other people, I’ve had it sometimes with therapists, you know, that come to watch. And if they were, like had difficult feelings or competitive feelings, I felt it immediately in the channel.
Bill Gasiamis 1:10:26
If I remember correctly, with the enthusiasm, essential, and that particular chapter, the parent who was getting better results with the child was saying, Look how far you’ve come. And then the mother was saying, Man, they’ve got so far to go or something like that.
Anat Baniel 1:10:52
It actually a lot more immediate, it’s in the moment. So we’re now working with a wonderful gal, adult, the older side who had a devastating stroke, went through three years of intense, intense, intense, you know, rehab, and then found us a and moved here, to be able to work and I don’t know how she was before the stroke, but she changes. But she really is still very impacted, but by what is not there yet.
Anat Baniel 1:11:37
I mean, she remembers how she was before. And, she keeps comparing yourself to how she was before. So when she’s with us, she feels the change and she’s delighted. But then when she doesn’t get our emotional support, she sinks into the sense of the comparison. And she’s paying a high price for it, I mean, she is progressed and she’s doing a lot better and, also during therapy, they told her whoever was their therapists kind of scared her about a few things.
Anat Baniel 1:12:15
If you don’t hold that arm your shoulder with the disconnect, if you don’t do this, this will happen. And it’s kinda like it’s already not happening. And already there are music is free and already down, he’s hanging and it hasn’t fallen off the shoulder. But but there’s, there’s a huge bias towards the fear actually, for her the the triggers the fear. And, so enthusiaism I wrote the book for the parents of the therapist, but in this case, my listeners, the adults who are themselves the subjects.
Anat Baniel 1:12:57
So it is really a practice, not to go into denial not to say that everything’s fine when it’s not denial is not my thing. However, the change is really the change. And because it’s a quantum system, the brain is not a small change, or a large change, it is a change or no change. It is a desire change, or an undesired change, these are the distinctions.
Anat Baniel 1:13:26
So if it’s in the direction you want, if you feel so you know, when I work somebody, and they get off the table, and they are free of pain. And then they say, well, let me see if I feel the pain. I said no, if you look for it, you will find it. Especially if you have had this for a long time, three years of you know all the limitations and everything. They’re there, she can always go back to it. That’s not something that I mean, it’s just like you can go back to crawling on all fours.
Bill Gasiamis 1:14:01
You can change your physiology so that it’s making pain again.
Anat Baniel 1:14:06
We don’t lose the old patterns. We develop new ones.
Bill Gasiamis 1:14:09
Yeah. And you replace the old pattern with a new one.
Anat Baniel 1:14:12
Yeah, I will need to get off really soon. I mean, I’m always happy to talk with you and your audience again. Listen, I would like we are going to be showing the Life Unbound. It’s a very, very inspiring we have Merzenich on it, we have Martha Herbert, we have Jill Bolte Taylor, we have five scientists that say why they think what I do is cool. I mean that approach makes sense.
Bill Gasiamis 1:14:56
Yeah. I agree. The approach makes sense.
Anat Baniel 1:14:59
And then I’d love to let your people know that so they can watch it.
Bill Gasiamis 1:15:05
Yeah, absolutely, I will. I really appreciate your time, I really appreciate the fact that you do the work that you do. Your book is amazing, I haven’t finished it yet, I’m going to finish it. And it really has changed the way that I can now kind of express the path to recovery, where, where before, it didn’t feel like I was doing the that I had the best opportunity in the version of recovery that I was given, although I’m very grateful for it.
Bill Gasiamis 1:15:41
I see how it can be definitely enhanced by adding some of the amazing essentials that you spoke about, you know, and that we’ve already discussed. So it does do that, like your method does make me feel and I think I would have benefited from having those additional essentials and that different counter intuitive way to look at recovery, all the all those years ago.
Bill Gasiamis 1:16:11
But that being said, it doesn’t mean it. I love what you also said earlier, which was that the Recovery Version that I was giving is still amazing in the face of having no recovery support. So it’s brilliant, right? And I’m very happy and grateful for it. This is a great tool to enhance the things that other people are doing.
Anat Baniel 1:16:34
And I would go further. It’s not just enhance what they do is different. What we do is to transform how we do it. We did move from buggies to airplanes. So they’re still transportation, it’s the recovery. But he said different universe. It’s important part step in the evolution of humankind.
Anat Baniel 1:17:05
It’s different humans, humans that operate that way use their own brains, you see, you can’t help somebody else to go gentler and do variations. And if you’re stuck and rigid and repetitive and limited and forceful, you you have to be doing the essentials from within yourself. So your awareness in I one of my essentials is awareness. You know, I mean, it’s truly an it’s an evolution of the use of self is what was given to us. You know, look at us, that we have ways to go, but yeah, so it’s not just improving what they’re doing. It’s different.
Bill Gasiamis 1:17:58
Yeah. And I love that part. I love that part that you said it’s also about us understanding the nine essentials, that people recovering. So that we can apply them.
Anat Baniel 1:18:08
With us the nine essentials with us exercising, yeah, you can’t do them. You can’t bring them to someone else. If you’re not doing them because then you’re not doing them you’re doing the opposite or different. It’s a transformational, it’s a shift. It’s not a little editing. That was one of the things that people have asked me occasionally, well, why don’t you just, you know, collaborate with the PTs, as I said, because it’s just like asking me to speak, you know, Chinese when I’m speaking Hebrew is a different language. It’s a different thing. And it’s hopefully, the future not too far away from now. That’s the point.
Bill Gasiamis 1:18:54
Anat, thank you so much for being on the podcast.
Anat Baniel 1:18:57
Thank you for allowing me to speak what I really think. And thanks for all you’re doing and for caring about your people.
Bill Gasiamis 1:19:08
Thanks for joining us on today’s episode. This is an interview that you must listen to more than once I believe. It is a very deep conversation that I must admit even I struggled to have the words to bring out what I wanted. Anat to discuss and tell us about so that you can understand the importance of the work that she’s doing and how she helps people.
Bill Gasiamis 1:19:34
But if you do listen to it and you’re curious and you just kind of barely understood some of the concepts, what I would encourage you to do is get her book, absolutely get her book, go through the book lists, listen to it online, if you can read it, and understand her nine essentials to supporting somebody.
The Nine Essetials
Bill Gasiamis 1:19:58
Make gains in recovery after a traumatic brain injury, or whether they’re born with a neurological condition because they are really counterintuitive and quite amazingly expressed in the book these nine steps, basically. So you know, before I wrap this episode up what they are is, is essential number one is to move with attension. And it doesn’t actually mean what the chapter heading says it’s far deeper and more nuanced than that.
Bill Gasiamis 1:20:39
Essential number two is to do things slowly to move slowly. And we briefly touched on that in the episode, essential three is variation, to give the body lots of different variation, lots of different ways to get to the same outcome or to the same intention. Essential number four is to use subtlety, something we didn’t really go into too much and discuss. Essential number eight is to a bigger part an essential number five is to enroll enthusiasm in the path to celebration of wins that somebody has no matter how big or small they are.
Bill Gasiamis 1:21:29
Essential six is flexible goals, which is a really important one, which we didn’t touch on, that you need to understand about having flexible goals so that the goal posts can be moved in your favor, if you don’t reach a particular outcome. Essential seven is the learning switch, which I haven’t read about yet. And I’m not sure what that refers to. But no doubt, it’s going to be another amazing chapter.
Bill Gasiamis 1:21:58
Essential eight is imagination and dreams. So how to activate your imagination. And I’m not sure exactly what dreams refers to, but it’d be really worth looking at. And essential nine is awareness. And I imagine that’s around about having awareness about what it is that you’re experiencing, and that you’re noticing.
Bill Gasiamis 1:22:25
And although the books written for parents, it kind of is something that you could look at and learn from, and apply to yourself in your own recovery. And potentially, you could make this book available to your caregivers, that they know what page you’re on, if they’re interested in, in understanding, a different way of looking at recovery.
Bill Gasiamis 1:22:53
And not only your caregivers, but also your physical therapists and occupational therapists, I know I’m going on about this book. And as soon as like, I have shares in it, I don’t, this is not a book that. That’s like all the other books. It’s a very, very different book. And, and that’s perspective is very different. So anyhow, if at all you got curious about it, you’ll be able to find the links to the book and to a net website via the show notes.
Bill Gasiamis 1:23:24
So please feel free to go to recoveryafterstroke.com/episodes so that you can see her episode, and then click on the link there and it’ll open up and it will give you all the details on the shownotes. So thank you so much for coming to the podcast and listening every week. I really appreciate it. Thanks for all the people who have left review, thanks to the people who get in touch and leave me amazing feedback.
Bill Gasiamis 1:23:54
And let me know how much of the podcast does for them. And I really appreciate the people who are sharing this podcast on social media and telling other people about it, because it’s really making it easier for other stroke survivors who are going through something similar to what we’ve all been through. It’s making it easier for them to find the podcast.
Bill Gasiamis 1:24:17
And that makes a huge difference when you’re in that early phase. And if you remember how good it was when you discovered the podcast, and makes a huge difference to to help how people can go about their recovery and not feel alone and hopefully it’ll lift their spirits and it’ll teach them something. If you’re a stroke survivor with a story to share about your experience, come join me on the show.
Bill Gasiamis 1:24:42
The Interviews are not scripted, you do not have to plan for them. All you have to do to qualify is best stroke survivor or care for a stroke survivor or be somebody who helps out stroke survivors. Whether you’re in the medical field or in an allied health environment, just go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you and see you on the next episode.
Intro 1:25:17
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Intro 1:25:34
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Intro 1:25:51
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Intro 1:26:12
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1 hr 28 min