Recovery After Stroke

Jeri Ward is the current Mrs. Ohio International, who in 2018 heard a popping sound in her head and instantly knew something was not right.

Social:
www.instagram.com/mrsohiointl2021/
www.thelemonadeproject.com
www.instagram.com/self_care_lemonade/

Highlights:

01:05 Introduction
02:48 Mrs. Ohio International
08:52 How Jeri Ward had a stroke
15:03 Permanent Blood Clot
21:41 The Right Kind Of Treatment
27:51 Jeri Ward Dealing With PTSD
35:46 Dealing With Anxiety
44:04 Jeri Ward Finding Her Purpose
55:39 Journeys Evolve

Transcription:

Bill 0:00
So, your carotid artery is still blocked?

Jeri 0:06
Yeah, forever.

Bill 0:08
And it’s not going to unblock?

Jeri 0:10
Nope.

Bill 0:12
Do you know why it’s still blocked and why it’s never going to unblock what caused the block?

Jeri 0:17
Yeah, so actually blood clots caused the blockage. And they caused so much damage in my carotid and in my areas of my brain. That you can’t replace it or fix it at this point. And I actually went through multiple surgeries, and they still could not remove all the blood clots in my brain, because they said that it would cause more damage than any good so I still have blood clots in my brain, and then my carotid that will never be removed.

Intro 0:53
This is the recovery after stroke podcast, with Bill Gasiamis helping you navigate recovery after stroke.

Bill 1:05
Bill from recoveryafterstroke.com This is Episode 142. And my guest today is Jeri Ward, Jeri experienced an ischemic stroke in 2018. And today is raising awareness about stroke through the Mrs. International pageant, where she competed and won the Mrs. Ohio International crown.

Bill 1:28
Now, if you have enjoyed any of the recovery after stroke podcasts, please share your favorite episode on social media give the show a five-star review on iTunes. And if you’re watching on YouTube, please give the show a thumbs up and subscribe to be notified of the most recent episodes.

Bill 1:47
Your support with this will make it easier for other stroke survivors to find the show and perhaps feel better about the situation they find themselves in. Thanks so much for listening. And now it’s on the show. Jeri Ward, aka Mrs. Ohio International. Welcome to the podcast.

Jeri 2:04
Thank you so much for having me. I appreciate your time.

Bill 2:08
My pleasure. Thank you for being here. I love the outfit. I love the red. Red seems to be part of your color scheme. It’s on your Instagram, it seems to follow you everywhere. It really it’s the color are some stroke awareness. campaigns were read for stroke and all that kind of thing. It is Stroke Awareness Month in the US this month in May.

Jeri 2:35
Yes, it is.

Bill 2:36
And you’re wearing your beautiful Mrs. Ohio. What do we call those?

Jeri 2:42
Well, it depends where you’re from, but we call them sashes. They’re also called banners. Whatever you fancy.

Bill 2:49
Okay. Before we talk about stroke, Tell me about how you get to be Mrs. Ohio International.

Jeri 2:58
Absolutely. Well, the international system. Most people don’t know because there are tons of pageant systems and a lot of people actually have never competed or been involved in pageant, but the system itself, you either compete or apply to be a state or national titleholder or international titleholder so we will actually be competing in July against people from all over the world in Kingsport, Tennessee.

Jeri 3:26
So I’m very excited. We actually have a Mrs. Australia. And so all over the world, literally. And it’s just a beautiful thing where we all come together. And obviously, I’m passionate about stroke. And there are about 50 other women that are passionate about different things. And we’re just a powerhouse force to be reckoned with in a long weekend.

Bill 3:50
Fabulous, what’s the point of the pageant? So I know it’s very much about raising awareness for different causes. What’s the reason it started? How did it get to be this massive event?

Jeri 4:01
Yeah, so the international system itself was born, basically on the premise that women have a lot to offer, and they have a lot that they’re passionate about. And it seems that when you have sashes and I don’t know if you can see my shiny crown up there. But whenever you have those things on people pay more attention to you.

Jeri 4:23
And so that platform really helps you to get out there and be passionate and bring education awareness to what matters to you. And I’ve also found that women especially when married and or have kids, you know, they’re occupied and they put themselves on the back burner a lot of times and it actually ties into my stroke story but more on that later.

Jeri 4:48
But this is really an opportunity to be your best self to get yourself in the best shape possible to represent something that you really believe in and just celebrate being accomplished and a married woman, all in one.

Bill 5:03
Wow, sounds like a very simple idea and an amazing cause. Now, you need to go back to that bookshelf of yours and grab that crown.

Jeri 5:18
You wanna seen my crown?

Bill 5:20
Yes.

Jeri 5:22
Hang on, just second I’ll grab it for you.

Bill 5:24
For the people that are listening on one of the podcast channels, you need to jump onto the YouTube channel, I’ll have all the links there. So you can see this amazing crown. Oh, my gosh, it’s awesome.

Jeri 5:38
This is it. How can you not pay attention to someone with this on their head? Right?

Bill 5:43
I know. Absolutely.

Jeri 5:45
Magic. So people oftentimes think that pageants are just for showing off yourself. And there is an element of that of being proud of who you are, and how hard you work. I’m not going to take away from that, because we work really hard.

Jeri 6:05
But truly, the main point of this is to get out and make a difference, and I actually just got to lobby and speak in front of the Senate and the House of Representatives about a stroke, transportation, law, all thanks to this guy. So I think it’s just so much more, but that’s a totally different podcast that we could go over a different day.

Bill 6:30
Yeah it sounds like it’s really important. And you’re right, there’s different ways to bring awareness to yourselves animals in the animal kingdom, if you think about the peacock, has all these beautiful feathers behind it. And its whole purpose is to bring attention to itself. Otherwise, it would just look like a boring bird like every other bird.

Bill 6:51
It goes to a lot of trouble to make people notice it. And sometimes, that’s what we need to do, we can talk and talk and talk. But if there’s not something separating us from the crowd, what happens is you get to blend into the crowd to people that do something different.

Bill 7:08
You look at artists around the world, it’s all the weirdos, and the different ones and the ones with weird hair and different color that we all gravitate to. And we make international success stories, because they are the ones that stand out and it seems like the message is more likely to get through, and more likely to infiltrate, you know all the noise that you hear from the regular crowd, I suppose.

Bill 7:38
And not that there’s anything wrong with the regular crowd. This is just a bit of a it’s a great example of people who are watching and listening who are stroke survivors and do want to share their story is you’ve got to be a little bit eccentric, you got to be a little bit out there. And maybe there isn’t an official pageant that you can be a part of, in your part of the world. But make yourself a crown and a sash and call yourself whatever you want.

Jeri 8:05
Absolutely, there’s no shame and calling it as you need it and becoming whatever you need to be. And I think that’s, you know, that’s the biggest part, I think, as survivors, especially is that if we want to make real change. So survivor, we just have to get out there, it doesn’t matter what kind of survivor you are, maybe you’re not even your stroke survivor.

Jeri 8:29
There’s no one more important than anyone else. And this doesn’t make me any more important than any other survivor in the entire world. But what it does allow me to do is get out there and have my voice heard. So I think it’s just about being shamelessly yourself and kind of relentless in your nature to get stuff done.

Bill 8:52
Okay, I’m gonna ask you about the stroke now, and then we’re going to loop back because I want to understand how all this connects. But first, what happened to you?

Jeri 9:03
Oh, that’s a long story. I’ll try to make it as brief as possible. But um, so on October 25 2018, I was a social worker, and pretty avid volunteer in my community of Ohio. And during that time, you know, we’re all faced stress and I was pretty stressed with my Social Work career and all the activities that I was participating in.

Jeri 9:31
And because of that, I had a headache for about four days and it just got to the point where on the fourth day that I just had to go home from work early and I was struggling really badly. I mean it was just a pounding headache. I even had some neck pain involved as well, nausea.

Jeri 9:50
I came home threw up a couple of times, took a bath and just tried to relax and rest my head and shockingly the headache went away completely. But later that night, about 10pm, I was sitting on the couch with my husband. And I was working, of course, because typical workaholic myself, and I was working on my laptop for the next day, and I heard a loud pop in my head.

Jeri 10:19
And I felt a bit of vertigo, almost as if the room was spinning and I was still sitting still and vision blurriness. And in that time, after the pop, they kind of fizzled out like the sound of fireworks. And that was the moment that I just knew something was not right anymore, I could just feel in my soul that things were not the same.

Jeri 10:44
And I tried to tell my husband that I was not feeling well, that something weird just happened to me. And in that moment, I realized I couldn’t speak at all also couldn’t move at all. So I was stuck for at least 10 seconds, which that doesn’t sound like a really long time. But when you’re trying to speak and move and you’re unable to, that feels like an eternity.

Intro 11:09
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?

Intro 11:26
Doctors will explain things that obviously, you’ve never had a stroke before, 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 it’s called the seven questions to ask your doctor about your stroke.

Intro 11:53
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. 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.

Jeri 12:12
And so I was finally able to say some stuff after about 10 seconds. And my words were coming out all jumbled up. And I was saying things that I did not mean to say at all. I was trying to say I need help, I needed to go to a hospital like we need to get medical care.

Jeri 12:32
But it was coming out car house dog cat and just from nowhere and I was sitting there and honestly I was kind of giggling out myself, like why in the world is going on. I got to stay at 30 years old, there was no part of me that suspected a stroke, because that only happens to old people, right? That never happens to someone 30 years old. But I was finally able to say hospital. And my husband took me to the hospital at that point in time and it was pretty terrifying.

Bill 13:10
Now that you know the pop noise, what was it? What popped?

Jeri 13:16
Yeah, so what to my understanding with my lack of medical degree. What actually made that popping cell was the blockage in one of my arteries. So my carotid artery which is the main source of blood to the head through the neck. Little anatomy lesson for anyone who doesn’t know you had two carotid arteries in your neck and vertebral supplemental arteries that run through the back of your neck into your head.

Jeri 13:47
Your carotid arteries are actually the main source of blood to your brain. Obviously, blood is very important to the brain for functioning and perfusion. But at that point, it was completely occluded. And so that means that it was completely stuffed up. So you kind of think, like if you’re tucking a pipe inside of your house, and you have long hair and you go to shower, and of course all the water sits on top because you haven’t cleaned out the pipe.

Jeri 14:19
That is kind of what happens in the carotid artery in that moment. And so, fun fact my carotid artery is still occluded to this day and it will never be able to be repaired. So that was what the initial pop was and then the fizzling out, I don’t know what that was.

Jeri 14:40
I think, for me in my opinion, that was just a lot of neuroanatomy dying at that point in time because we know that 2 billion neurons die per minute. And so I think my brain just got tired in that moment in losing that lack of profusion in blood I really shut down my brain.

Bill 15:03
So your carotid artery is still blocked?

Jeri 15:09
Yeah, forever

Bill 15:10
And it’s not gonna unblock?

Jeri 15:13
Nope.

Bill 15:15
Do you know why it’s still blocked? And why it’s never going to unblock what caused the block?

Jeri 15:20
Yeah, so actually, blood clots cause the blockage. And they cause so much damage in my carotid and in my areas of my brain that it is you can’t replace it or fix it at this point.

Jeri 15:35
And I actually went through multiple surgeries, and they still could not remove all the blood clots in our for my brain, because they said that it would cause more damage than any good. So I still have blood clots in my brain, and then my carotid that would never be removed.

Bill 15:53
Okay, interesting. So then people are going people listening, and even me, because we don’t know much about anything with regards to the medical thing. How come you’re still able to talk? smile, laugh, look at us. How can all this be happening? I understand briefly, but you tell me, do you know? Have you asked that question?

Jeri 16:16
Yeah, honestly, I’m able to do all that because the human body is absolutely amazing. and neuroplasticity is amazing. And I put in a lot of hard work during that time. So the region of my brain that was most severely damaged was the Broca’s area of the brain, which is responsible for a lot of speech, and a lot of fine motor activities, gross motor activities, etc.

Jeri 16:46
So the most things that were damaged was my ability to speak, move, read and write. So I lost the ability to do all of those things. Luckily, I think we’ve found through medical that, that stroke survivors, the younger they are, the better off their odds are because you have something called neuroplasticity, which is the brain’s ability to kind of recuperate and rebuild neurons after they die.

Jeri 17:16
The older you get, the more difficult that becomes. And so I’m very thankful for my age, I’m very thankful for how healthy I was, when I had my stroke. My doctors told me multiple times that I would not have made, the recovery that I made had I not been in as good a shape as I was going into the stroke. So I think that’s a testament to keeping healthy because you never know what life is kind of throw at you. And just do the best that you can.

Bill 17:46
How long were you away from home?

Jeri 17:51
A month, so I was released from the hospital. And after I was released, I did intensive speech, occupational and physical therapy for an outpatient. So I did that I couldn’t work obviously, I didn’t even know what letters were numbers were anymore. I couldn’t read or write at all.

Jeri 18:14
So work kind of went out the window. Then I did that from home for so was about six months or so. And so I guess it depends by recovery is always recovering. I don’t think you ever stop recovering. Thank God. But my main sense of recovery was about a year and a half on.

Bill 18:39
Yeah, in that time, how does your husband manage all of that? How does he cope? Because it’s traumatic, and it’s very scary. And here is my wife in hospital. She almost passed away and is there children?

Jeri 18:56
No, no children.

Bill 18:59
But still this whole situation, how does your husband deal with all of this? What is his main focus?

Jeri 19:09
I think keeping me alive and stain is his main focus. And that may just be a regular basis pre and post-stroke as well. I don’t think that was just stroke-induced. But truly, you know, he married who was this 30-year-old woman and then he got this toddler again, right because I couldn’t move without him, I couldn’t read or write, I couldn’t talk at all so I couldn’t even comprehend phone calls or make phone calls or doctor’s appointments or anything.

Jeri 19:49
I remember he had to bathe me during that time as well. drive me everywhere. So you know people often say that must have been so hard for you and for me, I’m just like my poor husband. Like he was the one that really had the difficult part because I was cognizant, but he was more self-aware of everything and the intensity and severity of the situation, I think more so than I even was.

Bill 20:19
Was he involved in bathing you while you were in the hospital, or was that done by the nursing staff.

Jeri 20:26
So I had an a tremendous nursing staff, and they actually took care of all that. But he was responsible for helping to set up all the doctor’s appointments to set up all the rehab appointments, to make sure that everything was paid for because we had over like $27,000 in medical bills during that time. He was also responsible for like sorting, me leaving my job, because obviously, I was not able to do that myself.

Jeri 20:57
So everything that allowed me that made me an independent functioning adult, he then had to take over that because I was literally a 115 pound toddler. And so I just think a lot of people overlook the caretaker and really, how much work and how much effort they have to put in to caretaking someone else? And the toll that takes on someone?

Bill 21:28
Was that something that you were aware of at the time, when you’re at your worst when you’re quite unwell? Are you aware of him? Or is there no opportunity for you to be aware of him?

Jeri 21:41
Yeah, the thing is, is I was completely cognizant the entire time, I was awake, during all my surgeries, I was awake when they were in my brain, and I could see the screen. When they were in my brain, the arm in front of me, I could see them moving everything. And I had an incredible medical staff that would talk to me the entire time, make sure that I was okay.

Jeri 22:05
I was very grateful that I was still spoken to as if I was a real person, as if I was there. I never had a single medical professional talk to my husband instead of me. And so I think things like that just mean a lot. Because we’re not able to do anything but move your eyes, that sense of people realizing that you’re still a real person, and that you still matter, despite the fact that you can’t respond. I think that kind of care is crucial, just kind of validates you as a human being.

Bill 22:41
I left when I was unwell. At the very beginning of the first week, I was at a hospital near home where the doctors were talking about me at the end of my bed. And they weren’t including me in the conversation and I imagined they had some things to talk about that didn’t need to include me, that was fine.

Bill 23:00
But there was a lot of the conversation was amongst themselves. And when I had questions to ask, there wasn’t enough answers. And even if the answer was we don’t know, we don’t have an answer for that there wasn’t even that. So I got really annoyed at that hospital and I discharged myself from that hospital, we went to another hospital, took all the medical records with me.

Bill 23:22
And found somebody who was going to talk to me and include me in the decision-making and in the conversation. And that was a game-changer because then even though in a situation where I had little control of the situation, I felt like I got some control back.

Bill 23:40
And I was able to feel good about the decision-making process about my own health and well-being going forward. So I really relate to what you’re saying. And a lot of doctors, perhaps overlook the patient, especially when the patient can’t speak. Or when the patient has lost their ability to communicate properly. There is a tendency to overlook them.

Bill 24:03
And I kind of understand how that might happen. But I think there needs to be a better focus more focus on the person who is unwell and get them to communicate one way or another however, you can if at all possible, get them to communicate with you. It just makes people feel better about the situation which is really terrible. It just makes it feel better. So I can relate to that. Your husband, is he at work at that time or does he have to take time off work what happens there?

Jeri 24:38
So he actually was supposed to be away but luckily that night he was not I literally would not be here without my husband that night. As far as the medical care. I knew he had to take time off from work. And then of course driving me to all my appointments and everything.

Jeri 24:56
He had to do that in between work. I had a lot PTSD, after my stroke, just the constant anxiety and fear that it was going to happen at any second again, and I was going to die this time, and being alone was the most terrifying feeling in the entire world. And so he would be like, I need to take a shower and it’d be like, Can I sit in the bathroom with you? Like, I could not be at a site for someone.

Jeri 25:25
So I think that’s a lot of overlooked things as well. Is that the caregivers mental health, because we’re needy, we’re needy, when we have a stroke, we need all the help and and love and care that we can get. And sometimes I can imagine he never complained. But I can imagine that in his mind, he was like, please am an adult let me shower by myself for a few minutes. Right. But he had to take time off. And he never complained he did it very graciously. I more appreciate than I could ever explain.

Bill 26:05
I would have been complaining and groaning and moaning.

Jeri 26:08
No, you would have you would not. I share in the back of your head, you would have been like Jesus lady, let me have a few minutes by myself. But no you would have.

Bill 26:21
I reckon I would have been less patient than my wife was, I reckon I would have been maybe not in front of her. But I think I would have been at counseling, I would have been whinging and complaining about her or something like that. And I would have been completely oblivious. And it would have been fair enough. Because I wouldn’t have had any clue what stroke is.

Bill 26:40
Because we’re not medical professionals, we’re normal human beings, we’re going about our daily life. Now we have to learn about stroke, and what happened to us as well as how that affects everybody else. But there’s no skills that you’re given when you get married to deal with that stuff. There’s no boost, you’ve got to learn on the go. And I’m also extremely grateful that my wife she never complained, and I never heard it.

Bill 27:08
But she did a tough sometimes because I was cranky, I was really unwell and being difficult because it was difficult for me and I didn’t know how to handle it. Now, you said something really cool which I wanted to ask about which was you had PTSD, which I’m assuming means that you don’t have so much now or it has eased.

Bill 27:31
There’s people listening and watching now who are going through exactly what you’re going through, then they are probably going through that right now. Because they’re in the early phases of stroke. How did the PTSD is off? And how did things start to get better? Let’s give him a little bit of a glimpse into the future.

Jeri 27:51
Yeah, so honestly, each day gets a little bit easier. And I wouldn’t say a lot. When I say a little I only need a little bit like this, like the slightest slither of joy is brought back into your life each morning that you wake up and you’re like, Oh, I made it. Like I’m still alive. And you kind of move you’re I don’t know, if the listeners have the numbness, their inability to feel their fingers and toes and that kind of thing. But you kind of move everything.

Jeri 28:25
They’re like, okay, it’s also here. But I think you kind of resort back into that childlike behavior of just needing an adult and needing to be safe and needing to be cared for. And I think that that primal nature of I just want to stay alive. And I just need help. And I think you start to get your competence back a little bit every day.

Jeri 28:54
I personally ended up going on anti-anxiety medication, because I felt like I was just drowning. And that was the best decision I’ve ever made. I’m still on the medication, I don’t ever want to go off the medication. It has made me feel as though I can breathe easier each day. And it really reduces my anxiety. I do still have those moments every now and then just being completely honest, where I’m like, Oh, that was a close one like that could have been a lot worse than it even was.

Jeri 29:32
And you know, with the job that I have now actually work in the hospital that I had my stroke. And you know, seeing my ICU room and watching ICU patients in the room that I was struggling in every single day and even washing people a die in the room from a stroke. There’s a lot to it right? There’s a lot to compartmentalize. into process and I just say, you know, you, you’ve got to do what’s best for you. If medication is best for you, that’s okay.

Jeri 30:11
If therapy is best for you, then that is okay. If crime once a day makes you feel better as you release your emotions, and that is okay, too. There isn’t a book, unfortunately, a textbook to walk us through this. And I wish there was, but every stroke, every situation, every person is too different. So you just really have to lean into other stroke survivors.

Jeri 30:38
And I remember I read a book from a stroke survivor. And she was just mentioning things that bothered her and things that she feared and she’s fully, fully recovered now. And I was just like, yeah, that’s me. And so I think finding other people who are step ahead of you as far as in your stroke journey, and really finding solace and peace in that, that can be you just give it time and be patient.

Bill 31:08
Yeah. Was counseling something that was good for you? Is that something that you did do or?

Jeri 31:16
Yeah, I guess so I only had a short spell of it. But it was good when I did it. You know, the fear of dying is actually something that most people have. But the thing is, when you’re that close to death, I think that’s a whole new element of the fear. I even remember things like my first Fourth of July for Independence Day for the US, we always have fireworks, of course.

Jeri 31:48
And I was sitting on the rocks with my husband, in Cleveland, Ohio, getting ready to watch a firework show. And the first firework went off, and it popped in, it fizzled out, and I lost it, I lost it. Because that you can think you’re better. I’m on anti-anxiety medication at that point. And in that moment, I was a mess. I was crying, I couldn’t breathe, we had to leave. So it’s really I can’t express patience for the journey.

Bill 32:27
Yeah, it’s a great example, what you just said about something triggering an emotion from the past. So I’m approaching nearly nine and a half years since the first incident. And I was at a party with one of my best friends who’s a female, and she invited all her best friends, and the majority of them are female, except for me, and there was I think, 10 or 11, or 12 of us girls, and we were really enjoying this party.

Bill 33:02
But the female energy enabled me to talk about stuff that I don’t normally talk about around men, and that I had me in tears, the majority of the party, good tears, and you know, really lovely tears. But just one particular lady brought out some stuff in me that I didn’t know was there.

Bill 33:22
And, it was not appropriate because it was at a party. But it was really appropriate because it was around the right kind of people. And I just left a little bit shocked that there was so much in there still after nine years. And of course, all the people there were all lovely and supportive. So it wasn’t an issue. And I could cry out, and I didn’t have to hide or anything.

Bill 33:49
But what I feel like was every time that happens, it helps me to put my experience further back into the past. So I’m not reliving every moment. Yes, a, an incident will occur where I’m talking about the first time I experienced the bleed in the brain, and then the second time, and usually, it’s when I’m in a public forum, and I’m trying to give a real honest description of what happened to me.

Bill 34:20
And of course, that honest description sets me off, it creates emotions that come up. And as much as I tell myself, I’m not going to cry in this particular presentation, I can’t stop it. Now nobody takes it the wrong way. everyone appreciates it and they take it the right way. But every time I do that, and I think that’s why I talk so much about my stroke in the podcast, and every other place that I talk about my experience.

Bill 34:52
I think why I do it is because it helps me put it in the past and therefore not relive it every single day. But once a year It triggers something triggers. And that doesn’t bother me. That doesn’t annoy me. That’s just like, wow, that came out of nowhere. Okay park that one, get the tissues, wipe those tears away. And just, again, think about why am I on okay now and why it’s okay to go through this and why it doesn’t really mean anything.

Bill 35:26
There’s no real, I don’t need to label myself as I’m still weak or I’m still, you know, emotional or anything. I don’t need to label myself after that happened. It happened. It’s an experience. I observed it. And then I moved on from it. Does that resonate with you? Do you feel like every time you have a little outburst it helps you?

Jeri 35:46
For sure. I think, I think what’s most important to remember is that we’re human. And that’s beautiful. Right? Like, we’re disasters, we try to do the best we can we have had something deeply traumatic happened to us. And you know, what I’m studying cognitive-behavioral therapy. I think the point is that traumas so deep in you, and the fact that you can chip away at that superficial trauma, like oh, you know, I made it through the car ride who I walked past that pasa hospital, so I’m okay with chipping that away.

Jeri 36:28
And, you know, I made it through this firework show, etc. And that’s all great, but it’s okay to feel sad and to feel scared and to feel I was talking the other day about feeling lonely, like strokes are very, very, very lonely diseases. And so for me, what it helps me to heal is actually advocating.

Jeri 36:55
So that doesn’t happen to other people, that’s very important to me. Each time that I have to tell my story in front of someone else to explain why it is so important. Because someone else doesn’t need to go through what I went through. That is kind of my healing process.

Jeri 37:12
And so I agree completely, I think it’s very important to find what helps you heal. Some people find that, you know, meltdowns and telling their story doesn’t work for them. And that’s okay too. But you do have to find what helps you to maintain peace, that is what keeps us sane, and keeps us moving forward. It’s so easy after stroke, because it is so lonely, to really recluse and, and to not seek out new adventures and be you too afraid to live.

Jeri 37:51
And if you stay in that place for too long, you’re going to get stuck there. And that is my biggest fear for stroke survivors is that the world is completely different now, post stroke. But if you find your new joy, and you take on new the little challenges every day, that that’s what it’s all about. It’s not about perfection.

Bill 38:14
That’s what I am. That’s exactly what I did. I didn’t know what I wanted to do. After the stroke, I was almost stuck in my own story in my own problems and that makes sense. And then I just started to solve little problems. How do I talk about this to a global audience.

Bill 38:30
And that was an idea that a friend of mine put in my head. I was having to talk about it just in my local suburb. And he said, there’s more ways to talk about stroke than just your suburb. He said, I got at the whole planet. And I thought, well, that’s a little bit bizarre. How am I going to do that?

Bill 38:49
Well, you could do a podcast. So then I solved little problems. What is a podcast? Okay, how do I get a podcast? What does it mean to have a podcast? How do I find people to talk on it? What am I going to talk about? And then slowly over the years, it became the recovery after stroke podcast, but it started off as something completely different.

Bill 39:08
And, it didn’t do much in the first two or three years. It’s only in the last couple of years that it’s really taken off because I launched it in 2015. And in the last couple of years, I’ve managed to do almost one episode a week. So that’s a big step. But it took ages to get there. And this is kind of what I’m trying to demonstrate and and tell people about.

Bill 39:32
So I love the way that you express the path. It’s small steps and little things and plenty of time ahead of us to do it and no need to put too much stress on yourself. I certainly did not have a goal to do one episode a week. Not at all. It just happened. But I know how it happened it just did.

Bill 39:54
So I’m going with it and I’ve put in systems to support me to do that so that I don’t have to let people down all the time and say to them, so I know I made an appointment. But we have to cancel because I’ve something else come up. If I’ve got an appointment now, for a stroke podcast, nothing else comes up very rare do I cancel one.

Bill 40:13
And that wasn’t possible at the beginning because I had too many doctor’s appointments, I had too much downtime because of fatigue, I had too much upset time because of emotional stress and trauma. So I looked after myself. And then as I started to come out of the fog, I started to then take care of other things that were on my mind.

Bill 40:37
And before the stroke, I had no, no sense no idea that I was going to do anything like this ever in my life about any topic. And I’m wondering, was pageantry in your timeline? Were you going to ever do anything like that? Or did this happen all because of your experience?

Jeri 41:03
So that is a funny question that you asked me that. I’ve done pageants from the time I was four until the time I was 29. And I said, Look, the last pageant that I did in August of 2018, was my last pageant ever, I was retiring, I was moving on to something new, competitive ballroom dancing, I was done with pageantry. I was very excited to kind of close that book.

Jeri 41:34
And then my stroke happened three months later. And, you know, I think you do things in life, for reasons that you never considered, because life happens to us sometimes. Not, you know, having a stroke at 30 was not on my bucket list. I did not check that one off I didn’t plan for that.

Jeri 41:59
But I realize it was actually in the ICU bed that night, after my one of my brand procedures, I realized that I’m as soon as I get my voice back. And as soon as I’m able to talk again, I will ensure that I use the new voice, whatever it sounds like to make sure that people don’t have to go through this.

Jeri 42:25
And I said, How can I do that? I was like, I’m gonna use TED Talk. So I did a TED talk. And then I was like, well, I’m going to do one more pageant, just one more. Because I know once again, that with this shiny crown, I’m able to get and generate the attention that I need to make sure that bills are passed and make sure that education is served in to the area.

Jeri 42:52
So to answer your question, long story short, I had been but I’ve retired. And then three months later, life was like you’re not retiring yet? You got one more day ago. And so hearing him going to Mrs. International in July, and with the hopes of saving the world is that cheesy? It’s real. It’s real. It is I am shamelessly just trying to save the world.

Bill 43:20
And the dolphins and the unicorns.

Jeri 43:22
listen, if they I don’t know if they have strokes, but if they do, then yes, them too.

Bill 43:30
Absolutely. animals do have strokes. And I almost got in touch with a lady whose cat had a stroke. And I was going to interview her for the podcast, but I couldn’t. We couldn’t make it happen anyhow. So she had a beautiful poster of her cat. And the hashtag was stroke survivor.

Bill 43:48
This poor little thing. And I just so wanted to interview this lady because animals have strokes. So yeah, interesting. I love that you want to save the world? Why not? If you’re going to save something you might as well save the world. I mean, everything else.

Jeri 44:04
I mean, we’re only here for a short time, right? Like you have to. It is so hard to explain a lot of times but I feel like pre Jeri stroke and post Jeri stroke are two very different Jeris. I’ve always been a humanist, I’ve always been a giver of making people’s lives easier.

Jeri 44:31
But I never really found my purpose. I honestly just felt like I was always just trying to find like what was important to me. I found that I felt like I had a missed opportunity somewhere and I was doing great work. No had a wonderful husband had a wonderful job, etc. But there’s still just something missing. And I’m telling you my stroke was hands down the best thing that has ever What happened to me? Oh, because I am 110%. Now, the person that I want to be 110%.

Bill 45:10
Okay I can completely relate to that. I say that all the time. That’s hard for some people to listen to some people hear that. And they say that stroke is the worst thing that happened to me, how can you say that bla bla bla. And absolutely I get it. And that might be correct for right now, I’ve met people all over the world who say that and are living difficult, you know, physical lives with regards to their ability and their challenge, they might be using a walking aid or a wheelchair, or they may have lost their perfect job or their perfect this or their perfect that.

Bill 45:47
And it takes a while but you get there. It wasn’t day one after your stroke where you went this is the best thing that’s ever happened to me, it wasn’t when you couldn’t walk or talk or use your arms. It wasn’t then it was later at some point where you got to be the person whose stroke was the best thing that ever happened to them.

Bill 46:08
I said that and I don’t know when exactly it happened. But it was kind of about four and a half, five years in. And I was also doing what you’re doing reflecting on all the things that I have achieved and done since then, that were not on my radar. I was way more self-centered, I was my way more about making money and all that kind of stuff, which is fine, because they’re important things.

Bill 46:33
But I never paid attention to other people. And I never gave my time to causes that were meaningful and helpful and useful. And I never had a real voice. I never don’t believe I had a real voice or a wait for my voice to be heard. And I felt like I had a lot of important things to say. And the only way that that happened was I found myself on the other side of this terrible life-threatening situation.

Bill 47:01
And here I am 142 or 143 episodes later. And they’re all stroke survivors that I’ve met given a voice to let them share and heal some part of their story. And also, who knows what that’s going to create for them. But for me, it’s given me a worldwide audience that I get about three and a half thousand downloads a month that started from three or two.

Jeri 47:29
Yeah. But that’s the stroke journey, right? That’s the stroke journey in general. Like everything just starts from one or two. Like when I’m running in the morning before work. I couldn’t walk. I didn’t just jump up and run. I think, you know, I had days where I cried all day long. I had days where I threw clipboards because I couldn’t remember how to write the word A.

Jeri 47:59
One day when I was trying to learn how to eat and, swallow and that kind of thing again, but I was so excited because I could finally get pasta again. So I was all the like, yogurt and jello and that kind of diet. I was like real food. Right? The first bite that it took, I bet the sign in my mouth because of my dysarthria I took my entire tray just tossed it.

Jeri 48:27
And I think people see us now and they’re like, okay, you know, good for you guys. Good for you guys like being able to walk and talk and have jobs and, and function normally in society, but they don’t realize that they weren’t there to see all the before. And, you know, you’re saying that you realize that this was a good life situation overall for you. That was four or five years later. For me. It was about a year later. And so once again, the timeframe was totally different. There’s no right or wrong for when you feel things.

Bill 49:09
Yeah. Behavior like throwing a tray of food across the other side of the room. Isn’t that unbecoming of Mrs. Ohio?

Jeri 49:22
Listen, I’m very real human being, I have feelings. I think that that is what makes me a really strong title holder is that I do not pretend to be perfect. I do not pretend to always have everything together. And especially when I want my food and they want my pasta still through this day by the side of my mouth, you’re likely to see some food thrown.

Jeri 49:55
So we’re all just once again we’re all just human And it’s the patience with yourself. I can’t reiterate that enough, because you’re gonna have days, when you know what was super simple to you before, like holding the fork is impossible. And learning how to read tie your shoes, impossible. And all these miniscule things, they just become, you know, celebrations, when you can finally do it again.

Bill 50:34
I’m teasing you, obviously. But I say it’s important reason why I say it, I say it because we have to be able to give ourselves a break. And also allow ourselves to be silly and do the wrong thing and misbehave. Just once you’ve done it, apologize after, and try not to do it in the future.

Bill 50:53
But be okay, the fact that you did it and you lost your cool, and you just lashed out, I lashed out heaps of times, and everyone copped the brunt of that. But they copped all the apologies later as well, a lot of apologies. That’s the only way you get through it, you have to get through it by being a little bit terrible sometimes and rude and angry and frustrated and annoyed. And then when you get time to calm down, just reflect on your behavior. And if it wasn’t appropriate, just apologize profusely for it.

Jeri 51:31
Well, and the people, I truly believe that the people who love and care for you and want the best for you. They will never understand completely, but they know that you’re in a difficult new situation, and which you’re just trying to learn how to live again. And that I think that’s what’s most difficult is when you have a heart attack.

Jeri 51:57
You have difficulties internally, but for the most part, you can still function post-heart attack, post-stroke, you’re literally learning how to do life all over again. And I threw a lot of things at my poor husband, but he still loves me. And we got through that. And I think in a lot of ways to become tighter and stronger with people post-traumatic situation. But yeah, a lot of apologies.

Bill 52:33
Yeah, that’s good. That’s fair enough. What about at the beginning, we spoke briefly about the fact that, you know, you’re raising awareness, you’re doing some work to create some awareness in government departments in government, and you were involved in speaking to a senator or at Senate, or what was that about? Tell me a little bit about that.

Jeri 52:59
Yeah. So I don’t know how it is in Australia yet. But I’m hoping to learn when emergency services come to get you at your home or wherever you are. In, you realize that you have a stroke, we have different levels of care, at the hospitals, certain levels of care did not have the highest level.

Jeri 53:20
And so if you have a severe stroke, you’re actually not going to receive the help that you need at hospitals are not a level one hospital. And so I am working and testifying our bills to become law to make sure to educate medical professionals, doctors in the general public on what level one hospitals are and what those protocols are to help to save lives.

Bill 53:44
Fabulous.

Jeri 53:46
Yeah. I never thought that I would be testifying but once again, it’s one of those stroke thing if you never realize what you are meant to do, until life happens to you. And you have to learn how to manage that. And so now I’m changing laws.

Bill 54:09
Well, who would have thought that you could have a stroke and then change laws?

Jeri 54:16
Yeah, I think life works in miraculous ways. Sometimes, ways that you never asked for, and ways that you never expected. But I think I would like to think that my journey and my situation is a testament to that you have to work with what life gives to you, and you have to make the best of the situation that you’re given.

Jeri 54:44
And just because we’re broken, doesn’t necessarily mean that we can’t still survive and make life work. Oh, goodness. Sorry, that was a cat. But I think it’s really important. Do you want to redo that?

Bill 55:07
No, not at all that’s beautiful. I love it.

Jeri 55:09
Oh, okay.

Bill 55:11
Well let the cat crush the party. There’s no problem with that at all. Who is that cat?

Jeri 55:20
This is Snickers. She’s my baby, she’s 1 of 2. She’s the world’s worst cat. But I love her anyway. I think we all have family members or friends that are the worst, but we love them anyway, she’s my one.

Bill 55:37
That’s beautiful. So what I was gonna say about that journey that you went on is, it’s not about thinking about the journey is it’s just about starting it, and then not knowing where it’s going to end up and letting it evolve. Because this is my journey, like everything that happened has just evolved I’ve never planned once.

Bill 55:58
Sure, some people said, maybe you can offer this or do that or do that. And that may be something that I involve or create or use or access or whatever. But initially, it just started and then whatever comes from it comes from it. And this is how stroke recovery really is. It’s just about putting in a little bit of focus towards doing something that you love.

Bill 56:21
And if you’re doing what you love, amazing, other things will come from it. And five years from now, you’ll look back, and you won’t understand exactly how that happened. But you’ll be so grateful that it happened. And I think that’s the story of stroke survivors and, and I see a similarity in the pageant situation is that you start out competing to become a Mrs. Ohio, for example.

Bill 56:46
And other amazing things come from whether you didn’t plan or expect. And that’s not why you started, you just started to compete and to meet new people and to have new experiences and to learn from these other people.

Jeri 57:02
Yeah, I think, you know, I’m a control freak, I always have been. But I do have to say that my stroke really allowed me to loosen up a little bit, and to let me live a little bit. And some of the best things that have happened to me have come from plans that I never made or never intended to.

Jeri 57:26
I mean, I talked to someone in Australia right now that I maybe never would have met. And you know, I hope to meet you in person one day, because I think there are strength in numbers, I think it’s, it’s important to, to live a little and let life happen and realize that I truly believe that everything happens for a reason.

Jeri 57:52
I don’t always understand that reason, a lot of times, but the fruition there were moments in time where I was like, What did I do wrong? to deserve a stroke? Like, I’m just replaying my life and understanding like, what could I possibly have done? But this is what I did. This is this is why. And I’m proud of that fact, it took me a while to get here. But I’m proud of that fact.

Bill 58:22
Yeah. The only thing you did was you’re born. That’s the only reason you had you waited 30 years and then you had a stroke to say anything you did, you’re born that no one else plans, that that’s just part of life, it’s part of our process. And we are oblivious to really those things until it happens to us.

Bill 58:42
And unfortunately, at 30 It’s too early for somebody to have a stroke, any age is too early, but it’s really early. But at least it allows you to have a lot of time ahead of you re realigning your life and re configuring it so that it’s a better version of life for you and maybe this is the message that you needed. I don’t know, um, you know, this is me talking about myself as well, you know, that’s kind of what it was.

Bill 59:10
And I’m taking it as an opportunity to grow and evolve. And I think once you get beyond the initial trauma and all the really, really hard days, there are better days to come. And that’s really what we’re trying to do is create awareness and let people know that we are a number of years ahead of you, perhaps and this is how we are talking about stroke now and we weren’t talking about it like that early on.

Jeri 59:38
Absolutely not.

Bill 59:40
This is your time is going to come there’ll be some time in the future where things are going to feel better. look better. sound better, be better. Just you’ll get a it’ll be a matter of time.

Jeri 59:52
Be patient.

Bill 59:55
Yeah. Well, what can I say? This has been a really lovely opportunity to meet with you, Jeri, I really appreciate your time as we come into the end. And just before we wrap up, can you tell me a little bit about the lemonade project? Because that seems like it’s a little other side of you. But it’s also part of a lot of what you do. Tell me a little bit about what the lemonade project is about?

Jeri 1:00:28
Yeah. So the main reason for my stroke was due to stress. And I think we can all relate to having stressors that are that are very inevitable. And, unfortunately, life we’ve all come to realize, you cannot change life a lot of times, but you can change how you respond to what’s given to you.

Jeri 1:00:51
So the point of the lemonade project is to take my stressful lemons and make lemonade. And what I do through that project is I actually teach free coping skill classes, stress relief classes, and help people to understand what healthy living is.

Jeri 1:01:11
Because I think that is one of the main points of having a happy and successful life is, is to learn how to cope with with what life throws at you. And so, the lemon a project was born actually, when I was in speech therapy. I didn’t know how to read or write yet, but it’s like what they learn it’s game on, we’re gonna get this ball rolling.

Jeri 1:01:35
And so I’ve been able to speak to over 31,000 people and 28 countries and teach them self-care techniques. And really teach them how to prioritize themselves and to teach them that they are important. They are worth it. And it is long term important to make sure that you’re maintaining your health and those that you love.

Bill 1:02:00
Fabulous for people that are listening and want to know more they can go to thelemonadeproject.org and on Instagram they can find you at?

Jeri 1:02:23
MrsOhioIntl2021.

Bill 1:02:25
I’ll have all the links to that in the show notes. Anyway, so all the websites, the lemonade project and the link to the lemonade project Instagram. Thank you so much for being on my podcast. I really appreciate it.

Jeri 1:02:47
Absolutely. I’m so grateful that you have me and I just want to say to anyone listening or to anyone watching to you don’t hesitate to reach out to myself or to yourself for help or advice or if you need someone to vent to we are the perfect people to do that because we’ve lived it done it throw in a lot of plates we’ve been there so just know that you have a support system even if you don’t know myself I’m all for stroke survivors because I know how difficult it can be so happy to be here happy to share my message and thank you.

Intro 1:03:28
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Intro 1:03:53
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The post Mrs. Ohio International & Stroke Survivor – Jeri Ward appeared first on Recovery After Stroke.

Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6.

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Article About Hereditary Hemorrhagic Telangiectasia

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The post Paige Keely Foundation – Gina Keely appeared first on Recovery After Stroke.

Neale Mahon experienced an ischemic stroke nearly 30 years after radiation treatment to deal with a brain stem tumor.

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Intro 18:22

Intro 18:41

Intro 19:02

Neale 19:25

Neale 19:39

Bill 20:09

Neale 20:22

Bill 20:35

Neale 20:47

Neale 21:09

Bill 21:28

Neale 21:32

Bill 21:40

Bill 22:12

Neale 22:25

Neale 22:51

Bill 23:26

Neale 23:37

Bill 23:57

Neale 24:09

Neale 24:49

Bill 25:22

Neale 25:53

Neale 26:21

Bill 26:44

Neale 26:54

Neale 27:23

Neale 27:53

Bill 28:24

Neale 28:41

Bill 29:03

Neale 29:11

Bill 29:19

Neale 29:24

Bill 29:26

Neale 29:47

Bill 29:57

Neale 30:06

Bill 30:13

Neale 30:16

Bill 30:27

Neale 30:30

Bill 30:34

Neale 30:35

Bill 30:47

Neale 30:56

Bill 30:59

Neale 31:02

Bill 31:08

Neale 31:13

Bill 31:15

Bill 31:36

Bill 31:56

Bill 32:12

Bill 32:32

Neale 32:56

Bill 33:11

Neale 33:15

Neale 33:54

Bill 34:15

Neale 34:22

Bill 34:23

Neale 34:27

Bill 35:10

Neale 35:15

Bill 35:25

Bill 35:48

Neale 36:22

Neale 37:06

Neale 37:25

Bill 38:07

Bill 38:37

Neale 39:02

Neale 39:35

Bill 40:07

Neale 40:17

Bill 41:05

Bill 41:32

Neale 41:52

Bill 42:14

Neale 42:23

Bill 42:49

Neale 43:25

Bill 43:38

Neale 43:44

Bill 43:49

Neale 44:05

Neale 44:42

Neale 45:05

Bill 45:26

Bill 45:52

Neale 46:27

Neale 47:08

Bill 47:38

Neale 48:03

Neale 48:25

Neale 48:54

Bill 49:29

Neale 49:30

Neale 50:00

Bill 50:28

Bill 50:44

Bill 51:11

Bill 51:40

Neale 52:03

Bill 52:20

Neale 52:25

Bill 52:30

Neale 52:35

Bill 52:38

Bill 52:59

Bill 53:31

Neale 54:03

Bill 54:42

Bill 54:59

Neale 55:31

Neale 55:58

Bill 56:25

Bill 56:47

Neale 57:20

Neale 57:42

Neale 58:04

Neale 58:29

Neale 58:49

Neale 59:24

Neale 59:45

Bill 1:00:17

Bill 1:00:51

Bill 1:01:23

Neale 1:01:50

Neale 1:02:12

Bill 1:02:53

Neale 1:03:05

Bill 1:03:10

Neale 1:03:40

Bill 1:03:47

Neale 1:03:47

Neale 1:04:15

Neale 1:04:41

Bill 1:05:16

Bill 1:05:47

Bill 1:06:18

Bill 1:06:43

Neale 1:07:11

Bill 1:07:34

Bill 1:07:50

Neale 1:08:08

Bill 1:08:20

Bill 1:08:39

Bill 1:08:56

Neale 1:09:11

Bill 1:09:13

Neale 1:09:16

Intro 1:09:21

Intro 1:09:38

Intro 1:10:00

Intro 1:10:16

Intro 1:10:39

Intro 1:10:55

The post Brain Stem Tumor & Stroke Recovery appeared first on Recovery After Stroke.

The last thing Karen Moorman expected after a Stroke was that the Cryptogenic Stroke Recovery would make her migraine headaches go away for good.

Socials:

Highlights:

00:37 Introduction

Transcription:

Karen 0:00

Intro 0:24

Bill 0:55

Bill 1:20

Karen 1:41

Karen 1:59

Karen 2:18

Bill 2:38

Karen 2:49

Bill 2:51

Bill 3:11

Karen 3:45

Karen 4:08

Bill 4:40

Karen 4:42

Bill 4:44

Karen 5:18

Bill 5:30

Karen 5:38

Bill 5:56

Karen 6:20

Bill 7:04

Karen 7:19

Bill 7:48

Karen 7:54

Bill 8:23

Karen 8:32

Bill 9:10

Karen 9:18

Bill 9:24

Karen 9:32

Bill 10:01

Bill 10:27

Bill 10:51

Bill 11:08

Karen 11:36

Bill 11:56

Karen 12:03

Bill 12:16

Karen 12:39

Bill 12:55

Karen 13:04

Bill 13:06

Karen 13:13

Bill 13:42

Karen 13:47

Bill 13:48

Karen 13:54

Bill 13:59

Karen 14:05

Bill 14:17

Karen 14:23

Bill 14:46

Bill 15:05

Karen 15:41

Karen 16:42

Bill 17:01

Bill 17:26

Karen 17:46

Bill 18:02

Bill 18:18

Bill 18:49

Karen 19:07

Bill 19:32

Karen 19:45

Bill 19:54

Karen 19:57

Bill 19:58

Karen 20:01

Bill 20:08

Karen 20:13

Bill 20:18

Karen 20:25

Bill 20:50

Karen 21:00

Bill 21:02

Karen 21:06

Bill 21:34

Karen 21:35

Bill 21:38

Karen 21:41

Bill 21:43

Bill 22:03

Karen 22:33

Bill 22:57

Karen 22:57

Bill 23:05

Bill 23:27

Bill 23:44

Karen 24:10

Bill 24:48

Bill 25:10

Karen 25:33

Bill 25:35

Bill 25:49

Karen 26:23

Bill 26:32

Karen 26:54

Bill 26:57

Karen 27:08

Bill 27:09

Karen 27:12

Bill 27:44

Karen 28:13

Karen 28:36

Bill 28:51

Karen 29:06

Bill 29:08

Karen 29:13

Bill 29:40

Karen 29:43

Bill 30:02

Karen 30:20

Bill 30:40

Karen 30:41

Bill 30:42

Bill 31:11

Bill 31:37

Karen 31:59

Bill 32:02

Karen 32:22

Bill 32:26

Karen 32:38

Karen 32:59

Karen 33:23

Bill 33:54

Karen 34:14

Karen 34:25

Bill 34:50

Bill 35:16

Karen 35:36

Bill 35:51

Bill 36:10

Karen 36:40

Bill 36:44

Karen 36:49

Bill 36:58

Karen 37:05

Karen 37:30

Bill 37:54

Bill 38:22

Bill 38:41

Karen 39:11

Bill 39:31

Karen 39:35

Bill 39:37

Karen 39:44

Bill 39:47

Karen 39:51

Bill 39:59

Intro 40:21

Intro 40:40

Intro 41:05

Bill 41:48

Karen 42:10

Bill 42:12

Bill 42:26

Bill 42:44

Bill 43:14

Bill 43:34

Karen 44:01

Bill 44:21

Karen 44:31

Karen 44:55

Bill 45:04

Karen 45:31

Bill 45:32

Bill 45:54

Bill 46:16

Karen 46:51

Bill 47:18

Bill 47:43

Bill 48:12

Bill 48:36

Karen 49:06

Bill 49:11

Karen 49:18

Bill 50:03

Karen 50:10

Bill 50:56

Karen 51:13

Bill 51:24

Karen 51:30

Bill 51:32

Karen 51:35

Bill 51:47

Karen 51:50

Bill 51:59

Karen 52:09

Karen 52:37

Bill 53:01

Karen 53:02

Bill 53:10

Karen 53:19

Bill 53:44

Bill 54:08

Bill 54:34

Bill 55:01

Bill 55:38

Karen 55:50

Bill 55:53

Karen 55:54

Bill 55:58

Karen 56:03

Bill 56:06

Karen 56:15

Bill 56:37

Karen 56:39

Bill 56:49

Karen 56:56

Bill 57:03

Karen 57:04

Bill 57:26

Karen 58:01

Karen 58:32

Karen 59:02

Bill 59:06

Karen 59:16

Bill 59:28

Karen 59:34

Bill 59:36

Karen 59:43

Bill 59:49

Karen 59:55

Bill 1:00:19

Karen 1:00:22

Bill 1:00:26

Bill 1:00:52

Bill 1:01:19

Karen 1:01:54

Karen 1:02:19

Bill 1:02:39

Karen 1:02:46

Bill 1:02:47

Karen 1:03:09

Intro 1:03:15

Intro 1:03:42

Intro 1:04:05

Intro 1:04:20

Intro 1:04:44

The post Cryptogenic Stroke Recovery – Karen Moorman appeared first on Recovery After Stroke.

Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life

Socials:

Highlights:

01:10 Introduction

Transcription:

Kent 0:00

Bill 0:21

Intro 0:58

Bill 1:33

Bill 1:56

Kent 2:17

Bill 2:19

Kent 2:51

Kent 3:32

Kent 4:00

Kent 4:40

Kent 5:11

Kent 5:29

Kent 5:49

Kent 6:13

Kent 6:32

Bill 6:47

Kent 6:52

Bill 7:00

Kent 7:07

Bill 7:16

Kent 7:21

Kent 7:46

Kent 8:09

Kent 8:23

Kent 8:38

Kent 8:59

Kent 9:17

Kent 9:35

Kent 9:55

Kent 10:13

Kent 10:37

Bill 11:06

Kent 11:07

Kent 11:36

Kent 11:57

Kent 12:13

Bill 12:52

Kent 12:55

Kent 13:12

Bill 13:33

Kent 13:54

Kent 14:17

Kent 14:47

Bill 15:17

Kent 15:24

Kent 15:49

Kent 16:09

Bill 16:29

Kent 16:41

Bill 17:06

Kent 17:15

Bill 17:36

Kent 17:44

Bill 17:50

Bill 18:15

Bill 18:47

Kent 19:26

Kent 19:51

Kent 20:31

Intro 21:14

Intro 21:32

Intro 21:57

Bill 22:16

Bill 22:47

Bill 23:09

Bill 23:35

Bill 23:53

Bill 24:21

Bill 24:48

Bill 25:19

Bill 25:53

Bill 26:15

Bill 26:30

Bill 27:01

Bill 27:21

Kent 27:58

Kent 28:32

Kent 29:08

Kent 29:29

Kent 29:55

Kent 30:18

Bill 30:49

Bill 31:09

Bill 31:34

Bill 32:03

Bill 32:36

Bill 33:18

Bill 33:48

Bill 34:26

Bill 34:51

Kent 35:11

Kent 35:30

Kent 35:51

Bill 36:19

Bill 36:51

Bill 37:29

Bill 37:55

Kent 38:08

Kent 38:36

Kent 38:56

Kent 39:18

Kent 39:34

Kent 39:56

Kent 40:15

Kent 40:38

Kent 41:09

Kent 41:30

Kent 42:03

Kent 42:29

Kent 43:14

Bill 43:30

Bill 44:08

Bill 44:31

Bill 45:14

Bill 45:39

Bill 46:03

Kent 46:28

Kent 46:57

Kent 47:19

Kent 47:37

Bill 48:00

Bill 48:25

Bill 48:55

Bill 49:22

Bill 49:39

Kent 49:56

Kent 50:20

Kent 50:48

Bill 51:04

Bill 51:26

Bill 51:54

Kent 52:13

Bill 52:17

Bill 52:40

Kent 53:11

Kent 53:41

Kent 54:05

Kent 54:22

Kent 54:41

Kent 55:12

Kent 55:39

Kent 55:59

Kent 56:15

Bill 56:39

Bill 57:06

Kent 57:33

Kent 57:58

Bill 58:21

Bill 58:41

Kent 58:57

Bill 59:26

Bill 59:59

Bill 1:00:28

Kent 1:01:01

Kent 1:01:30

Kent 1:01:55

Kent 1:02:28

Bill 1:02:51

Bill 1:03:14

Bill 1:03:34

Bill 1:03:58

Bill 1:04:17

Bill 1:04:34

Bill 1:05:06

Bill 1:05:48

Kent 1:06:19

Kent 1:06:49

Kent 1:07:02

Kent 1:07:23

Bill 1:07:42

Kent 1:07:47

Intro 1:07:51

Intro 1:08:17

Intro 1:08:34

Intro 1:08:55

Intro 1:09:19

The post Anxiety After Stroke – Kent Bragg appeared first on Recovery After Stroke.

Tracey M. Brown was fit, healthy, and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected.

Socials:

Highlights:

01:11 Introduction

Transcription:

Tracey 0:00

Tracey 0:14

Tracey 0:29

Tracey 0:44

Intro 0:58

Bill 1:36

Bill 2:02

Bill 2:33

Bill 3:02

Tracey 3:19

Bill 3:20

Tracey 3:54

Tracey 4:07

Tracey 4:23

Tracey 4:37

Tracey 4:58

Bill 5:22

Tracey 5:26

Tracey 5:41

Bill 6:06

Tracey 6:40

Tracey 6:55

Tracey 7:11

Bill 7:28

Tracey 7:31

Bill 7:32

Tracey 7:35

Tracey 7:45

Bill 8:16

Tracey 8:28

Tracey 8:47

Tracey 9:06

Tracey 9:26

Bill 9:52

Tracey 10:02

Tracey 10:22

Tracey 10:45

Tracey 11:00

Tracey 11:19

Bill 11:31

Tracey 11:38

Tracey 11:55

Tracey 12:21

Bill 12:43

Tracey 12:50

Bill 12:52

Tracey 13:15

Tracey 13:36

Tracey 13:54

Tracey 14:12

Tracey 14:39

Tracey 14:56

Tracey 15:13

Tracey 15:27

Tracey 15:41

Tracey 15:59

Tracey 16:30

Tracey 16:44

Tracey 16:58

Intro 17:19

Intro 17:36

Intro 17:58

Bill 18:21

Bill 18:50

Bill 19:20

Tracey 19:47

Tracey 20:18

Tracey 20:29

Tracey 20:46

Tracey 21:11

Bill 21:44

Tracey 22:09

Tracey 22:34

Tracey 22:54

Bill 23:15

Tracey 23:16

Tracey 23:38

Tracey 23:50

Bill 24:13

Bill 24:38

Tracey 25:23

Tracey 25:48

Tracey 26:07

Tracey 26:30

Tracey 26:50

Tracey 27:07

Tracey 27:28

Tracey 27:45

Tracey 27:59

Tracey 28:16

Tracey 28:29

Tracey 28:50

Tracey 29:05

Tracey 29:17

Bill 29:49

Tracey 30:11

Tracey 30:31

Tracey 30:53

Tracey 31:22

Tracey 31:40

Tracey 31:56

Tracey 32:12

Tracey 32:31

Bill 32:55

Bill 33:14

Bill 33:42

Bill 34:00

Bill 34:25

Tracey 34:50

Bill 35:17

Tracey 35:18

Tracey 35:43

Tracey 35:57

Tracey 36:22

Tracey 36:48

Tracey 37:11

Bill 37:38

Bill 37:55

Tracey 38:23

Tracey 38:47

Tracey 39:12

Tracey 39:31

Tracey 39:48

Bill 40:09

Tracey 40:16

Bill 40:29

Bill 40:58

Bill 41:26

Bill 41:48

Tracey 42:17

Tracey 42:39

Tracey 42:39

Tracey 43:26

Bill 44:04

Tracey 44:39

Bill 44:57

Tracey 45:00

Tracey 45:23

Tracey 45:40

Tracey 46:00

Tracey 46:22

Bill 46:50

Tracey 47:21

Bill 47:22

Bill 47:46

Tracey 48:05

Tracey 48:29

Tracey 48:58

Bill 49:17

Tracey 49:40

Tracey 50:02

Tracey 50:25

Tracey 50:44

Bill 51:04

Tracey 51:15

Bill 51:33

Bill 52:00

Bill 52:23

Bill 52:49

Tracey 53:19

Tracey 53:38

Tracey 54:02

Tracey 54:26

Tracey 54:54

Tracey 55:18

Tracey 55:41

Tracey 56:05

Tracey 56:25

Tracey 56:44

Tracey 56:58

Tracey 57:16

Tracey 57:37

Tracey 57:55

Tracey 58:11

Tracey 58:35

Tracey 58:50

Tracey 59:35

Tracey 59:49

Tracey 1:00:10

Tracey 1:00:32

Tracey 1:00:47

Tracey 1:01:10

Bill 1:01:34

Bill 1:02:09

Bill 1:02:31

Bill 1:02:51

Bill 1:03:13

Bill 1:03:40

Bill 1:03:57

Tracey 1:04:05

Tracey 1:04:47

Bill 1:05:19

Tracey 1:05:56

Tracey 1:06:17

Tracey 1:06:36

Tracey 1:06:53

Tracey 1:07:16

Tracey 1:07:34

Tracey 1:07:53

Tracey 1:08:11

Tracey 1:08:31

Tracey 1:08:41

Tracey 1:09:01

Tracey 1:09:30

Tracey 1:09:44

Tracey 1:10:00

Bill 1:10:17

Tracey 1:10:24

Bill 1:10:47

Tracey 1:11:04

Bill 1:11:07

Bill 1:11:25

Tracey 1:11:58

Bill 1:12:15

Tracey 1:12:19

Intro 1:12:26

Intro 1:12:52

Intro 1:13:15

Intro 1:13:30

Intro 1:13:54

The post How A 12 Inch Blood Clot Caused An Ischemic Stroke – Tracey M. Brown appeared first on Recovery After Stroke.

Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem.

Social:
www.instagram.com/sarah__nickel/

Highlights:

00:48 Introduction
03:06 What happened to Sarah Curlee?
10:49 Dealing with spasticity
17:02 Leg Spasticity lead to amputation
21:10 Sara Curlee’s life after amputation
28:19 The birth control factor
33:56 Overcoming difficult times
43:43 Sharing your story
54:25 Helping other people
57:42 What’s in store for Sarah Curlee
1:04:51 There are better things to come

Transcription:

Bill 0:00
You made a decision to have the amputation though, like how do you make that decision? How do you make such a serious decision to have part of your body removed? How do you get to that? I imagine, was it a quick decision?

Sarah 0:18
It was a really quick decision. It was like instantaneous, like, I mean, like I woke up my foot start spasming in this hard cast and had to deal with it for so long. I was like I’m gonna cut it off. I didn’t do it quickly.

Intro 0:34
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Bill 0:48
Bill from recoveryafterstroke.com this is Episode 136 and my guest today is Sarah Curlee. Sarah experienced a stroke at age 27. That might have been caused by birth control, or a hole in the heart, also known as a PFO. And a few years after the stroke, Sarah decided to have her foot amputated.

Bill 1:11
This is a fascinating interview. So make sure you listen to the entire interview and get to the very end. Now, if you enjoy this episode, and you think others should hear Sarah’s story, please share it on your favorite social media platform. And also leave the recovery after stroke podcast, a five-star review on iTunes, or your favorite podcast app.

Bill 1:37
And if you’re watching on YouTube, click the thumbs up button and subscribe to get notified of new episodes. By doing this, you will make it easier for other stroke survivors to find The Recovery After Stroke Podcast and it may just be making huge difference for them, especially if they’re in that early phase of stroke recovery where they’re feeling alone, and like nobody understands them, and like they don’t know anybody else who’s been through what they’ve been through.

Bill 2:10
So it would be very much appreciated. If you did leave us a five-star review so that the show can get ranked higher. And also so that other people can find it. Now, thanks so much for listening to the podcast. And for encouraging me to get to Episode 136. It’s a lot of work, but when I meet amazing people like Sarah, it makes it all worthwhile.

Bill 2:37
While the more while and when people reach out and tell me how much they enjoyed a particular podcast or a particular episode, it really makes the whole thing even more worth it. So thank you for being here and listening. Thank you for the amazing feedback. And now it’s on with the show. Sarah Curlee, welcome to the podcast. Thank you so much for being here. Tell me a little bit about what happened to you?

Sarah 3:07
So I had a right hemisphere stroke in August of 2013. And I kind of wanted to know if you’ve ever heard anyone else have this backstory just because that’s kind of why I want to do this because it’s weird. So no one else has ever heard of this happening before. So please let me know if you know someone who’s got this.

Sarah 3:27
So the stroke was on Monday, I was at work. I was caught very quickly. Luckily, I had a friend come up and talk to me. And I thought I was answering him but apparently, it wasn’t. And then he walks off and I’m like, dude, like where you going? We’re talking and then comes back with like a small army of people and like they sit down with me and they get me to stop working.

Sarah 3:46
And like, apparently my face is like really droopy? I don’t know, no one took a picture. So I don’t know what I was saying. I don’t know what prompted and all just like, everyone just go full like, get her to the hospital mode. But I was lucky, and I got to the hospital within about 30 minutes of the stroke onset.

Sarah 3:49
I got TPA. So in the doctor’s words, they took the blood clot size from a 9 out of 10 to 6 out of 10 when I had the TPA, and then the neurosurgeon removed the blood clot later that day, and I remember waking up on the operating table fine I was totally okay.

Sarah 4:31
Like I remember asking the doctor questions. We’re like, hey, like what’s going on? Like, if you clued me into why I’ve been here all day, that would be really great. And the doctors just like kind of stared at me and didn’t really know what to do with that because apparently it’s not common first stroke survivor to wake up, like fully cognizant.

Sarah 4:49
And so I was on a Monday like I said, and then for the Tuesday and Wednesday, we did all the tests. We did the push-pull tests, we did all the cognitive tests which speech was fine, everything was fine. Like I passed every test with flying colors. And I remember like EMT would pop their heads in and they’d be like, are you really a stroke survivor, a young stroke survivor who’s fine? Like no one could believe it.

Sarah 5:17
So I was out of the ICU by that Wednesday into the general ward. And then I left the hospital on Thursday. There’s like nothing. There’s no rehab you ever heard of that before?

Bill 5:31
Never heard of that before. So anyone who is listening to this episode, whoever is on Instagram, however, is anywhere in social media will do us a favor. Get in touch with Sarah, at Instagram, and let her know if you’re one of those people that had a stroke and then woke up and went home and everything was back to normal.

Sarah 5:57
Well, not back to normal, but we thought it was gonna be I was supposed to be okay.

Bill 6:05
They missed, your diagnosis wasn’t complete, and then they sent you home. And you missed out on all of the opportunities to go through rehab and all those types of things?

Sarah 6:15
Yeah, I never got any of that. Um, my brother’s actually his wedding was like a week later, I went to that I was in it and everything. And then, so everything was fine. And then I got doctor permission to start working out again two weeks after my stroke, and he had no reason to say no.

Sarah 6:34
So I started kickboxing again two weeks after my stroke. And then it took about two or three sessions before I started, actually, I am saving my foot and that’s why we’re talking because I am TMF. I will get to it at some point in this but my arm was actually the first one to start to, like feel residuals, like, I’ll hit the bag, and my left arm was dragging, I described as like having a bunch of tiny little rubber bands just like holding it back.

Sarah 7:00
And so I started working again, about a month after my stroke, again, no clue what was going on. I met analytical chemists. So like, I reviewed that all day. So I’m at a computer a lot. My hand was not working for the typing or anything like that. So I just stopped typing with it. Like I just stuck to my right hand.

Sarah 7:22
I went and I saw, I had tons of follow up appointments to like figure out what caused the stroke. Birth control and a hole in my heart are the two main contributing factors is a PFO, PFO got fixed and can’t be on birth control anymore. So theoretically, we should be fine in that aspect.

Sarah 7:43
But I remember showing everyone my hand, like, I would play piano like I do like piano. And I like, it doesn’t do it anymore. It did it better back then. But I’d be like, do a little piano was like slowed down quite a bit. And like my neurosurgeon like literally shrugs his shoulders.

Sarah 8:03
He’s just like, Oh, okay. And then I had another follow up appointment with my GP that I was assigned. And by then my foot did start to take over, my foot started to, I don’t know how to describe this in words without having a visual. So for the podcast sake, supposed to be flat, it started to turn on its outside, and then turn it inward, and then my toe is a hammer, so like becoming a clubfoot.

Sarah 8:31
And my ankle would start to give and it would start to give. So whenever I saw my GP, we focus mainly on that because I couldn’t really not walk, like I needed to be able to walk, I could function without pain coming into walk. So she actually referred me to an orthopedic surgeon.

Sarah 8:50
And I’ve met with him. And he wanted to do surgery on me. I mean, that was the solution to fixing the foot and we did some rehab molded the section over him, but it’s in physical therapy in the meantime. Because it spasming like it was like a foot spasm like all day every day, like constantly and so it took about a year before I finally walked myself in stress fractures.

Sarah 9:14
And I’ve been a walking cast. I was like, alright, let’s do surgery. Let’s do it. It’s gonna fix everything right because Google even said that I was gonna fix everything every other orthopedic surgeons that it was gonna fix everything I was alright, well, let’s do it. That’s fine. And then I’ll be okay. And I wasn’t at all actually made like 10 times worse.

Bill 9:32
So the surgery made it more painful and more?

Sarah 9:39
Yeah. It made it way worse. I’ve never really found a good way to describe the pain but it hurt. And then so what he did was to help control the spasticity and this one I don’t know that’s what it was yet. I hadn’t had a diagnosis yet so I haven’t even seen a neurologist yet.

Sarah 10:00
To control the specificity, what he did was he cut the tendon that goes down the outside of my left leg and cut it into reattach half of it where it was on the outside of my foot, and then took the other half and attached it to the inside of my foot to help like straighten it back out.

Sarah 10:20
And then he did that same thing with the tendon going down the front of my leg, cut it in half, put half of it backwards, where it started and the other half on the inside. And so I woke up from the surgery and hard cast and as I looked down, okay, okay, this is okay. And then a spasm really badly for like, four or five months.

Bill 10:50
What’s that like? Because people go through this and there’s not a lot spoken about what it’s like to feel spasms and to feel spasticity. How do you cope with it for four or five months after you thought you fixed it? What does it do to you emotionally and mentally?

Sarah 11:07
It’s demoralizing. I mean, it was I don’t think I coped with it at all. I mean, physically, I would take my toes to the hard cast to try to get to stop spasming mentally, and emotionally. I don’t think I ever I still, to this day I’ve really processed how much pain it caused.

Sarah 11:29
But I do know, I woke up in spasm and I was like, I’m gonna cut it off. Like, it’s just gonna have to go. It was like, I mean, everyone at this point has had a muscle spasm in their life. Imagine that like all day, every day, 24/7, 365 like, you can’t get it to stop. You don’t know why.

Sarah 11:50
And so finally, the hard cast came off, and the orthopedic surgeon saw my foot and saw that was actually like back to being crooked. And then I got my neurologist referral. So that’s when I found out that it was spasticity and dystonia, those are my post stroke diagnosis.

Bill 12:09
I’ll give you a little bit of a, I did get misdiagnosed or not treated properly, I felt after the second time my brain bled, so it bled in 2012 in February, and then it bled in March. And in March, I went home, and I didn’t know who had visited me, I couldn’t type an email, I couldn’t finish the sentence.

Bill 12:37
You know, I was getting stuck with words, I couldn’t drive, I couldn’t do anything. I was extremely fatigued. And the only thing I knew to do, because I had been seeing a counselor before that was to go and see my counselor and continue those appointments.

Bill 12:53
And when I got to the counselor, I think it was about a month after I’d been discharged the second time. My counselor, my psychologist said, have you seen a neuropsychologist? And I said, What’s that? Like I don’t know what that is. And she said, well, it’s somebody that’s going to assess you to see where you’re at cognitively and what you can and can’t do.

Bill 13:17
And I said, oh no I didn’t know that they existed. All right, I’ll go and we tried to make an appointment and the appointment. It took about six months to get an appointment with a neuropsychologist because, again, I didn’t realize that I could pay upfront to go and see somebody instead of waiting through our public hospital system to get a referral and go see somebody, but didn’t realize that I could just go and pay.

Bill 13:43
So we waited, so in that time, I was zoned out, I was zonked out, I didn’t know what was happening to me most of the time, had a lot of fatigue. I had a lot of spaced-out moments where I didn’t know where I was in the world and what was happening. I was kind of in this kind of like a drugged phase of my life, like it was really bizarre.

Bill 14:07
So that’s the most that I can relate to what you’re saying that you went home and everyone thought, you’re perfectly fine. Whereas when you went back to kickboxing, and all that kind of stuff, I went home and they thought I was perfectly fine. They didn’t refer me to anybody.

Bill 14:23
But I struggled a lot with just being normal and being able to be in the world. So I think that’s part of why I do this podcast. It’s so that other people whose loved ones have had a stroke and when you’ve had the stroke you’re not the one that can make the decision the rational decision or the correct decision about your health and well being.

Bill 14:48
So that loved ones or caregivers can perhaps stumble across one of these episodes and go well I need to ring this person or I need to follow up on this. I need to do that for my loved one. So is that similar to how it happened to you? Do you feel like they just, you kind of slipped through the cracks and missed an important conversation somewhere?

Sarah 15:12
Yeah, thats probably the best way to describe it. I mean, once you’re out of the system, at least where I was living, once I was on a system I was never able to get in. Like, I never. I mean, I told doctors constantly what was happening, and I was constantly looking for questions.

Sarah 15:31
And I was actively seeking out answers from the people that I thought had the answers, and no one could ever tell me what was wrong. Like, no one could ever tell me what to do. I mean, they were all more than willing to open my foot back up, and keep doing surgeries on it. But every single one, I gave them the same questions like, Can you take the pain away? None of them said, yes. So I was like, I’m not doing that again. I’m not putting myself to that kind of pain again.

Intro 15:59
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, or doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 16:23
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 the seven questions to ask your doctor about your stroke.

Intro 16:43
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 17:02
And you made the decision to have the amputation though, like how do you make that decision? How do you make such a serious decision to have part of your body removed? How do you get to that? I imagine was it a quick decision what was that like?

Sarah 17:19
Oh yeah it was a really quick decision. It was like instantaneous, like, I mean, like I woke up my foot started spasming in this hard cast and had to deal with it for so long. I was like I want to cut it off. I didn’t do it quickly, so my stroke was in August of 2013. And my mom was diagnosed with cancer in October of 2013. So she had to fight for her life and all that.

Sarah 17:47
And I wasn’t gonna put myself in a position where I could possibly ruin my life and not be able to get to her whenever I needed to because we lived two states away. So like I wasn’t gonna venture down that road until I was ready until she was ready. And ultimately, what made her ready was she did pass away in December of 2015.

Sarah 18:10
So she passed away in December 2015. So in between September ish of 2014 and December of 2015. I did all the research I did the botox that is apparently very common, it didn’t work. I talked to all the orthopedic surgeons, they all gave me the exact same answers.

Sarah 18:32
I did a lot of research on amputation. And what was out there, and what all, I really want to know if anyone else had ever amputated because of something like that, and I couldn’t find anything. So I didn’t really have any knowledge base for if it would work. And it was a huge risk. And I knew the huge risk. But once she passed away, I went ahead and just blindsided my whole family and all my friends with the decision to amputate the foot.

Sarah 18:58
Because I didn’t talk to anyone about it. Like I didn’t tell anyone like I was supposed to be okay. Like I wasn’t supposed to have to be dealing with that kind of stuff. And like, I don’t share. Well, you’re actually the first person I’ve ever talked to about this seven years later. So yeah, yeah, so like, it’s just like seven years later just now and like actually, like sharing any of this.

Sarah 19:22
So I blindsided everyone, like, my whole family was just like, what, like, you’re gonna do what? And I mean, they were all supportive. They’re totally okay with it. And when she passed once my mom passed, and I got through all that. I got back into Nashville and actually met, I met someone at the gym and we bonded through our crutches.

Sarah 19:47
Because I was on crutches at that point in time just because like I was on and out of crutches I was on and out of air cast I was in and out of AFO I was doing all that. And he was like he told me his story and I told him my story and he said he’s like, but I’m gonna cut mine off. I’m like, who, what, when, where, why and how I want one.

Sarah 20:05
I was like, I’ve been wanting this for like over a year now. And he gave me his doctor’s name and number. And this was like two seconds after I got back in Nashville life going again. I met the doctor, and he was a great guy. He’s a vascular surgeon. He gave me my options.

Sarah 20:21
And it just everything he was saying made so much sense. And everything was just so aligned with what I was wanting out of my life, I wanted my life back. And, it is unfortunate that my mom had to pass away to be able to start the journey. But once she did pass away, I was able to start looking for ways to get normal again, to get happy, again, to get out of my depression, funk and just the hate of life.

Sarah 20:50
But I met with the prosthesis. He actually runs a charity out in Nashville. I got very lucky with that as well, I talked to him, I was like, can I wear heels again? And I was like, can I run? Not again? But can I really don’t because you always want we can’t have you know, I was like, I can’t run now I want to he unfortunately remember that, that I asked that question and made me run.

Sarah 21:15
I amputated in May 9th of 2016. And, in hindsight, there was a lot of morphine involved in my happiness at the very beginning, but I had no pain, like I was pain-free. Like I was just like, so happy and so relieved. And like, once the morphine were off, it took a little while to get back to that point.

Sarah 21:36
But like I was just so relieved that I didn’t have anything spasming like the pain was gone. Like that you have to do inpatient rehab for two weeks, whenever you amputate. That’s the first time we ever even focused on my hand. Like, I was so ready for the amputation. Like they didn’t have anything they had to do with me for the foot. Like I was already like, Pelican, like Flamingoing whatever.

Sarah 22:00
More often not anyways, like I already took myself off on my left side as it was so I was so prepared for it just naturally, that we spent the whole time focused on the hand and working with it and trying to figure out how to, like get it stretched out and how to figure out how to like, get it functional again, if we even could. But yeah, it was the most insane I think I’ve ever experienced in my life.

Bill 22:23
Wow. It’s absolutely fascinating that the thing that has made a difference to your life more than anything, after all these experiences that you’ve had is the amputation. And that improved your quality of life, I’ve got a friend who is double amputee.

Bill 22:39
And he was about 19 and experienced a condition that was called I can’t remember right now, but I will remember it in a little bit. And as a result of meningococcal, and as a result of that, the bacteria attacks, the extremities of the limbs, he’s lost a couple of fingers, and it impacted one of his legs severely and he had to have amputation.

Bill 23:09
And then it impacted his other leg as well, but not severely enough to need an amputation, but severely enough to cause a lot of pain and a lot of problems. So you had one leg, which was amputated, and had a prosthetic and the other one was just really painful and not really supporting him and able to allow him to get back to his life.

Bill 23:37
So he decided that he would also have that one amputated. And now he’s a double amputee at the legs. And as he arranged it so that he was amputated, his leg was amputated in the same spot, so that he has really good balance. And now he’s able to use amazing prosthetic limbs and walk properly and have no difficulties getting around and being active, and playing golf and doing all the things that he loved to do.

Bill 24:12
I interviewed him for the podcast a few years ago. And what I’ll do is I’ll put a link in the show notes of the podcast episode with Mike Rolls. And if anyone’s interested and curious about Mike, they can check him out at mikerolls.com.au. But all those links will be in the show notes.

Bill 24:39
He’s a fascinating guy and he does some public speaking and it goes around Australia teaching helping other amputees survivors and it just a great guys. It’s an amazing guy. Absolutely amazing. He was the first person I met who said that he was, you know, made the decision to have one of his own limbs amputated.

Bill 24:59
You’re the second person, so it seems like it’s probably rare. And it’s not many people doing that. But it’s great that both of you have had an amazing, positive outcome after doing something so drastic and what other people would say is really dramatic. And how could you possibly cut your own leg off?

Sarah 25:22
Yeah, it’s kind of interesting because I don’t have a percentage or anything, but a lot of empties are elective, like, a lot of us had something happen in life that we obviously didn’t want to have happen. And we had the choice of keeping the limb and keeping the lower quality of life or removing the limb and having a higher quality of life. It’s not as uncommon as I think most people realize.

Sarah 25:47
And I really realized that until I started meeting other amputees and they say, like, they could have kept their limb and they chose not to, it’s actually quite common, I actually know a double amputee as well. And he was born to a genetic defect. I can’t remember but he ended up amputated both of his legs as well.

Sarah 26:07
And his quality of life went through the roof as well. I mean, it’s kind of, it’s all about the mindset. You know, I mean, it’s, no one ever wants to have a stroke. No one ever chooses to have a stroke. So it’s a very depressing mindset. Like, it’s really hard to come back from it’s really hard to, to move on with life knowing what life was before. And it’s just not something that you would ever wish upon anyone. You’d never wished the invitation upon anyone.

Sarah 26:36
But if you choose to amputate, it’s just completely different set of rules on the whole. That’s in the power. Yeah, it is. It’s very empowering. It is. Yeah. It’s just like, when it works. It’s a huge muscle release. I mean, huge, huge commercial, and then you can move on with life and prosthetics are great nowadays.

Sarah 26:57
We’ve come a long ways from the wooden legs. So I mean, it’s just it’s so impressive. I have three feet now. Actually, I have one for heels because Aaron. And then I have one for like everyday usage, it’s got good ankle flexing. It’s so I do get like a bit of an ankle. So I have that kind of.

Bill 27:24
Movement.

Sarah 27:25
Yes, thank you words. And then I have a running blade. He did remember I asked about running. But actually after I amputated I started walking a month after my amputation and I started running two months after my amputation, I ran two half marathons in a Ragnar all within a year and a half of amputating I have confirmed I’m not the biggest fan of running.

Sarah 27:49
And I actually did a lot of damage to my upper limb. Like my arm, I lost a lot of more mobility that I was already losing. And it’s just so it’s not worth it for me to keep running. I still use it at the gym a lot to like do like sled poles and stuff like that. And anything that requires like a little faster movement. But I don’t run much at all anymore. But I mean, it’s I couldn’t have ever done any of that with my real foot. I could barely walk without a cane and with my real foot.

Bill 28:19
I get it, it makes sense. I totally get a well done for doing it and going down that path. Have you ever stopped for a moment to consider the birth control issue, I know that you’re about the fourth a woman or fifth woman I’ve interviewed who has seemingly been completely normal and healthy.

Bill 28:43
And at a very young age below 30 or even somewhere near 30 had a stroke. And the only thing that they could put it down to was that they were taking birth control. Is that something that plays on your mind? Is it a conversation that you’ve had with more people to get to the bottom of that?

Sarah 29:05
I think it is an incredibly important piece of information for everyone who’s ever going to because birth control I’ve got found I was like 12 all for the same thing that most people that age get brought on. I mean, I’m a I’m a preteen with hormones I get it’s just periods are incredibly painful.

Sarah 29:22
So they put you on birth control at such a young age. I was 27 I had the stroke. So do the math how many years it is I can’t remember. But like, and it’s just it comes with the warning labels, but we don’t know to read them. Like we’re kids. Our parents don’t know that read them because they just want us to not be in pain once a month like and they’re happy at the results that they see.

Sarah 29:43
And obviously, we’re not trying to get pregnant if we’re on birth control. So like it has so many benefits, but you never realize that the risks are high. And as actually, there’s actually an episode of Oprah Winfrey Show I’ve never seen it but, she has like a ton of stroke survivors on her show all had strokes and their main reason was birth control.

Sarah 30:10
So I don’t, I used to know the percentage, I can’t remember percentage of birth control cause strokes, but it’s higher than it should be. And then having that hole in my heart as well, the, the general theory is that the clot started in my legs, and instead of going down as my lungs, like I should have it pushed through the hole and went up into my brain.

Sarah 30:34
And I mean, that could have easily been solved with a bubble test, so a bubble test is whenever they shoot sailing into your heart, and then as the sailing stays where it’s supposed to, you don’t have a whole of the sailing moves into another chamber, you have a hole, but I’m just like, at least like, do some, like, check a poor little girl who’s about to start on birth control and make sure that she doesn’t have any kind of pre-existing condition that could cause further problems down the road.

Sarah 31:06
It’s just, really unfortunate how much it’s not talked about. I’ve never really talked to him about it. But I don’t really know how to talk to I don’t know who to talk to, I don’t know how to talk to people in general.

Bill 31:19
You’re doing all right for somebody who doesn’t know how to talk to people.

Sarah 31:23
Yeah, I wrote up a rubric. So I have my talking point.

Bill 31:29
That’s all good. Look, I thought I’d ask just, I’m just so stunned about it, I keep meeting more and more women who have said the same thing. And I just, I can’t believe it, I just cannot believe it. And I figured that somebody needs to do something about it or say something about it.

Bill 31:44
And I’m very surprised, I didn’t know that there was an Oprah special on it or something like that. And that was done, though. Just Google that here. It was done in October of 2011. That was when she made a point of it, and did this particular show about it. So it’s been a while.

Bill 32:07
And I dare say that there wouldn’t be too many people moving to make any kind of change, because the perceived benefit of birth control, I’m assuming in society is far greater than the perceived risk of stroke. And even though people who have a stroke and were on birth control, it’s still not definitive that they had the stroke because of the birth control.

Bill 32:34
And that’s how they get out of saying, well, lots of things cause strokes, we don’t know, and not necessarily the birth control. Although there is a warning label on birth control that does say it does increase the possibility of stroke.

Sarah 32:49
Yeah, and I mean, every environmental factor can be thrown into what can cause a stroke, a lot of strokes are perfect storms, I mean, you have everything fall into the right spot to have a stroke. Like if we go down farther down, like dehydration was a concern of the for the stroke.

Sarah 33:08
But they tried to say kickboxing was part of the reason I had a stroke. Like there was a laundry list of reasons why I possibly had the stroke. It’s just those were the top two. But you’re right. I mean, with so many other different factors that can be put that can play into having a stroke, you could never pin it on just birth control.

Bill 33:25
No, you can’t.

Sarah 33:26
But it really should come as a red warning label instead of like a tiny like in the middle of a word. warning label.

Bill 33:34
Yeah, I agree with you. So your mum passed away at the same time when you’re recovering from stroke when you’re suffering and struggling through all these other issues as well, that I’m gonna make a bloody obvious statement. But obviously, it was hard. I know it was hard.

Bill 33:56
How do you get through it though? Like how do you overcome all the shit that you’ve got to deal with at the same time in your life and you’re fairly young and like most people who are below 30 don’t have a lot of experience in overcoming such emotionally difficult times as well throw a stroke into the mix. But how did you get through what did you need to do to overcome and get through?

Sarah 34:24
I kept busy, I cried a lot. I have a dog. I know it’s not the same but my dog is like, literally the definition of an emotional support animal. Like she was like the sole reason that I ever even remotely wanted to continue trying. Because I mean my mom was failing daily.

Sarah 34:51
And she was actually the only one I ever really talked to about anything. So like it was really great to have her support. So just sit there and talk about our failing bodies and like so I at least had her to talk to about it. I’m gonna talk to you what else about it, especially my family, I don’t want them to know what I was going through whenever we get hurt or worry about, I just a lot of crying.

Sarah 35:14
And I’d be that threw myself back into work, I was working like 70 hour day, that not days, what, like 70 hour weeks, whenever I was needed, I would just work a lot, I would try to get out there and be normal, I stayed active in the gym for sure. To this day, the gym is easily like my happy place.

Sarah 35:36
If I’m on the top bowed mountain, or headed to the top of a mountain with with Caya. I just I tried not to think about it failed more often than not, but try not to think about it. And pre amputation, I didn’t have any other option, but to just ignore it as much as I could, because I had no solution to the problem.

Sarah 36:03
And then once I amputated, or once well once my mom had passed once I amputated i was able, that’s whenever I was finally able to figure out how to be happy again. But I definitely spent the two-ish years just in a funk, like depressed, anxious, like I didn’t know anyone to talk to had no one to like, tell what’s going on didn’t even have an answer to what was going on.

Bill 36:39
You seem like a pretty outgoing person I can’t believe you didn’t have anyone to talk to Is it because you chose not to? Or because you’re not that kind of person. How is it that you didn’t have anyone to talk to I find that amazing that people say that I get that they say it, and I understand how they say it and how they might get to that point.

Bill 37:01
But I find it fascinating that of, you know, you’re one person, and you’re surrounded with people wherever you live, unless you’re in a remote location. And you felt like you had no one to talk to about it? Was it just something that you imagined that you didn’t have anyone to talk about?

Sarah 37:22
I isolated I’m not gonna say willingly, but it is probably more subconscious than anything. my significant other time was a rock, he was great at the whole thing. The stroke ended up causing a lot of arguments, because he wanted life to go back to normal.

Sarah 37:40
And again, I was supposed to be fine. So life was supposed to go back to normal. So a lot of arguments about that, because I couldn’t go back to normal. I couldn’t go back to like being a social butterfly while I was overseas, like going out, like going out places with him and like doing all these things that we were doing pre stroke.

Sarah 37:56
So I followed up on that end, and then the stroke ultimately ended up ending us because I kind of talked to him about it and then work again, I was supposed to be fine. So no one knew what was going on. And once I there was actually one time that I had a cane, I love my cane, I think she’s awesome.

Sarah 38:19
And I would break her out whenever I needed to back when I had my real foot because it would hurt. And so there’s one day I needed my cane back. And so I broke it back out and I was at work with it. And like one of my co-workers like literally pointed at it and laughed.

Sarah 38:35
Like, actually that day, I just found out that my mom got diagnosed with stage four cancer like so it was a really bad day. Like I didn’t leave the bathroom for like two hours, like I was in there crying for like two hours. But like I would hone in on things like that. And I would hone in on my behavior and my attitude and how like I was just so unhappy. And I would get snippy because of it.

Sarah 38:59
And like so I just opted to not talk to anyone like it was easier that way. It was easier to not share than it was to share, especially since I still didn’t know what was wrong. I still didn’t know how to fix it. And I wish I had sought out answers on how to make it better before knowing how to make it better. That makes sense?

Bill 39:23
Makes sense, complete sence. And that’s why I question you on, how do you feel alone and I kind of knew what you were gonna say but people listening and watching this are gonna definitely feel alone and they might recognize something in you that they haven’t recognized in themselves.

Bill 39:42
And they might be able to say, okay, I’ve got to do something about this situation that I mean, and maybe the feeling of being alone is just a creation in your own mind and I get how rude could somebody possibly be by pointing at your cane and laughing.

Sarah 40:03
The rudeness was not intended, I know that.

Bill 40:06
It’s still rude. And, that makes sense that you would retract from interactions with people because you’re trying to protect yourself and you’re trying to keep yourself from being further emotionally impacted. Not only you’re going through a stroke, your mum’s unwell, and there’s people laughing at your cane like ridiculous how stupid?

Sarah 40:34
Yeah, in hindsight, actually, if I had known it was gonna be like a social study amputating my foot, I really would have documented this better. But back when I was in my air cast, strangers would walk up to me like all the time, like, Oh, my gosh, what happened? What did you do? How did you hurt yourself? And I never had an answer to that.

Sarah 40:51
I was always like, I had surgery. But no one ever cared about my answer to is they always wanted to tell me their story on how they ended up in air castle how they ended up with two air casts how they like, fell off a mountain skiing and how they ended up breaking both their feet.

Sarah 41:03
Like everyone just wanted to tell me their story because it was so relatable, right? And I amputated the foot, very rarely do I get asked what happened? Like, more often than not, I get people who stare at me for sure. And it’s kind of funny, because now I want to talk about it.

Sarah 41:17
I’m like, Oh, ask me I want to tell you, I’m ready to tell you. But I wish I had used that time and that air cast as a chance to talk about it. Like I wish I had been honest and been like a stroke. Like, I had a stroke. And I’m not like, I can’t walk without this or I can’t walk out the AFO and I could have at least practiced on strangers.

Sarah 41:42
What to say to people that I knew and people that I cared about. And then instead of I was pushing them away. Instead I was actually like avoiding them because I couldn’t talk about it. Like I really wish I had practiced on strangers I guess.

Bill 41:58
But now it’s a great thing to reflect on and to share now because people listening right now might go Okay, let me test out my sob story on somebody I don’t know and I’m never gonna see again.

Sarah 42:12
Exactly so random person in a grocery store and tell him your whole life. I mean, it’s good practice.

Bill 42:18
If they’re keen enough to ask, they’re gonna have to listen to the answer.

Sarah 42:24
That is true. I had to listen to their stories. They have to listen to yours. It’s true. Very true.

Bill 42:29
And isn’t it amazing that questioning is a way to open up an opportunity for them to tell you what happened to them so that they can get it off their chest. And they don’t really give a shit about you.

Sarah 42:40
Yeah. I would always say um, I would always say I’m just gonna like say like something funny. Like I saved a calf from a burning building or something like that, like some so I’ve never actually did it because I don’t know. I just I couldn’t ever get the words out because not that eloquent with words.

Sarah 42:58
But, but now that I actually tell the truth on the rare occasion, someone will ask me what happened to my foot more people ask me my hand in general, but like, I’ll always answer with I had a stroke. And that’s weird enough. Apparently. Everyone’s just like, Oh, I don’t know what that means.

Sarah 43:14
I was like, Oh, you were so young. I’m like, yeah, I was 27 when I had it, and then it’s just awkward silence. And then I walk away from the stranger. And but I practiced. So yeah, so I mean, it’s just such a strange answer as it is. So it never it very rarely leads to follow-up questions I love it when it leads to follow-up questions. And those are some of my favorite conversations. But it just doesn’t happen that often. So apparently, I had the weird story all along. I just never knew it.

Bill 43:44
You should do just before my surgery, I was really eating really well. No sugar, no gluten, no dairy, no alcohol. And of course, when you go to a party and you’re not having any of that stuff, and people are offering you cake and alcohol and all that, they ask you unknowingly Oh, how come you’re not drinking? or How come you’re not eating cake or whatever.

Bill 44:10
And then I got to that point where at some stage I started telling them and they you could tell they regret asking me about 45 minutes later and their trying to be polite and not get out of the conversation. And they asked you had a stroke. Yeah, and I bled and and this happened and that happened and they cut my head open and they did all that stuff.

Bill 44:31
And people are just sitting there going geez I wish I’d never asked that question. They’re not gonna tell that their thinking that but they’re too polite to walk away and they’re people that I kind of know through other people. So it was you know, not the right time for them to walk away and get out of it but I didn’t do it to annoy them or upset them or anything like that.

Bill 44:55
I did them because I felt I think like you I felt like it was time to start sharing. I think I felt like they were old enough to have a stroke that people that were asking me, so maybe I was kind of raising awareness about it. And I wanted to tell them that I stopped smoking. And I wanted to tell them that I stopped drinking, because, like you, I did have the perfect storm, but I think I created the perfect storm myself.

Bill 44:55
So I did all these little things that did lead to that weak blood vessel in my head finally going, we can’t cope anymore, I’m gonna bleed out, you know. And then I started to take control back of my health and well being, and I was proud of that. So I wanted to tell people that that’s what I was doing.

Sarah 45:43
You should be proud of that. You have such a positive mindset as well, that’s so great. It’s hard to have a positive mindset after having something like that happen. It’s so much easier to just fall in a black hole.

Bill 45:57
Yeah, well, I did. I shared that story as well, on episode 100, I interviewed my wife, you know, and, at the time, a week or two before my surgery, her mom passed away. So we were going through her mom’s passing, and then we were preparing for the funeral. And at the same time, we were preparing for potentially life altering brain surgery.

Bill 46:23
And it was just a real shit time, in every way, shape, and form. And if you didn’t have a positive mindset, even, even in the midst of all the distress and the depression, and the anxiety and the you know, bad feelings and the bad emotions. If you didn’t have a positive mindset, I don’t know how we would have got through it.

Bill 46:44
We had two kids, you know, you can’t just collapsed in a heap. And it doesn’t work, there’s too much going on to do that. So what’s the solution? The solution for me was just to find ways to have a positive impact on my own life. And for me, it wasn’t an amputation, but I can so relate to what you said about how you chose amputation, it seemed like the harder path, but it was the path that gave you back your life.

Bill 47:13
And that’s kind of what I did, I chose what appeared to be like the harder path. And for some people, some people would appreciate this stopping alcohol is a hard path for some people. But for me, that was easy. Because now that that’s done, I can just go back to not having to worry about am I again, creating the perfect storm to have another stroke? And if I have another stroke, how much worse is it going to be than what it is now? Because it’s not gonna be better?

Sarah 47:45
How old were you when you had your stroke, or your bleed?

Bill 47:50
I was 37. You know, and working 16 hours a day and two kids and wife and mortgage and cars and all that shit, right? And then it was like, everyone I know, around me is doing exactly what I’m doing. Like they are a candidate for having the same experience that I’m having.

Bill 48:12
And maybe by me sharing my story, they’ll just pay attention a little bit and reconsider a couple of things on it. I don’t know what but maybe they won’t, but maybe they will. I don’t know. It’s kind of where I was coming from. And also, I was getting used to being public about it and getting used to my next phase.

Bill 48:36
Getting prepared for my next phase, which was to do the podcast and to do you know, recovery, stroke recovery coaching and to do YouTube videos and to do Instagram lives, you know, so it was kind of my proving ground. It was I got those suckers involved and practice my message or story or whatever.

Sarah 48:57
Yeah. And how long ago did you start this podcast? I’m trying to find out, I can’t really get an answer.

Bill 49:03
I started it in 2015. And I didn’t do a lot of episodes back then I was only doing probably, you know, maybe three or four episodes every few months. And it really ramped up in the last three years or so where I’ve been doing about an episode a week. So we’re on close to about doing 50 or so episodes a year. And at the beginning it was called the transit lounge podcast and I was just interviewing random people about different things that they ever come.

Bill 49:35
And then there was some cancer survivors and then there was a lady who overcome multiple sclerosis. And there was Mike Rolls who I mentioned earlier who had the double amputation.

Bill 49:49
So I was just interviewing people about having overcome things but then I realized that actually my real passion and my real community and the people that are related to who related to to me the most was stroke survivors. So I changed it about a year and a half ago, two years ago, and I called it The Recovery After Stroke Podcast. And, it took off from there.

Sarah 50:12
I’ve tried my hardest after my stroke to find something like this, or find a support group or anything like that. So I never found one. So what you’re doing is really very impressive. I mean, everyone has been through something like we’ve been through wants to find someone out there who they can talk to and relate to and know that they’re not alone.

Sarah 50:35
And it’s great that you have a platform that you’re reminding us and letting us all know that we’re not alone or telling us in the first place that we’re not alone. Because it’s a very, it’s scary in of itself. But the idea that you think that you can’t ever talk to anyone and have them understand what you’re talking about makes it scarier, trying to get life back on track. So it’s great that you’re doing this.

Bill 51:00
I was seeking out anyone near me that had a stroke, or I could relate to but the people I was meeting were all older than me. And then I did meet a few locals that were younger than me. And we kind of did relate. But then I think the main reason I did the podcast was so I can meet other people that I related to.

Bill 51:18
So I wouldn’t feel alone. And so I would feel like somebody understood me and knew what I was going through. Even though they were on the other side of the planet, it didn’t really matter. So now I’ve met 130 stroke survivors who have shared their story on the podcast who are, like me, similar to me understand me, and I don’t feel so alone. And when I reach out to them on Instagram and ask, you know, silly questions, I get a heap of answers, people respond.

Sarah 51:48
I love those answers. I love that you asked those questions. I’ve spent more time reading your comments than any other comments on Instagram.

Bill 51:56
It’s fascinating to me that people A would want to respond, and I’m glad that they do because it then makes Instagram worth being on. You know, just today, I put another post there and I asked, What is something that stroke caused that you would pay anything to make better or go away?

Bill 52:16
I’m really looking forward to what people have to say about that.

Sarah 52:20
I’ll answer it when we’re done with this.

Bill 52:22
And they’re already on there, you know, I only posted it 10 minutes before we got on to this episode. And they’re already on the leaving, you know, comments like neuro-fatigue, it’s hard to explain to somebody, and I guess to someone it sounds made up, but it’s very real similar to a migraine, I often feel like, I need to lie down in a dark room with no external stimuli to feel better.

Bill 52:46
People are just posted, there’s like, already 10 comments on there. And I just posted it 40 minutes ago, 50 minutes ago. So I love that I can do that. And I get a lot from it. But the people who comment get a lot from it. And I’m so glad that you’re one of them.

Sarah 53:04
Yeah, mine’s chronic pain, to answer that. I really wish the chronic pain will go away your questions. I mean, they’re just they’re such great conversation starters. And it’s this there’s a stroke survivor support group in Nashville now I actually found them because I ran a 5k for them after I amputated obviously.

Sarah 53:31
But it’s called Seriously Awesome Stroke Survivors. But she was Trista is actually, she’s never had a stroke. She’s just, few last podcast with Peter, he was talking about something that I can’t remember what it was. But it made me think of Trista. Oh, on how she’s never had a stroke. But she’s sitting there trying to help everyone who has and how she’s just like this most selfless person and like want to help someone which doesn’t actually personally know what they’re going through.

Sarah 54:01
But I met a lot of stroke survivors through them. But yeah, same thing. They were all older, I still never met many younger stroke survivors. But they were all such amazing people, though, it is great to be able to share the stories on a personal level. But that’s actually why I started my Instagram was to find other stroke survivors as well. So I think I guess I probably found you about a year ago. I just started on tiny change sort of recovering from a stroke.

Bill 54:25
Yeah, something like that. It makes sense. That’s when it kind of really took off. Peter G. Levine was Episode 135. So his the episode just before you, I just released that today. And it’s gonna go live. It’s live already. And he’s a clinical researcher, and he and his family and his wife and I don’t know how many people he knows are all involved in helping other people overcome brain injuries and recover from stroke and all that kind of stuff.

Bill 54:56
And I’m like, why would you do that? I think it’s so fascinating. That’s the path that they choose, and they go down. And when I met people like that in Melbourne in my hometown, I again didn’t feel like I was alone. Because there was thousands of researchers doing work. At these institutes and at these hospitals to help people like us. It’s such an amazing thing. I find it fascinating.

Sarah 55:25
I didn’t realize that until that podcast that, I know Australia had the Stroke Foundation, I follow them on Instagram, but I didn’t realize that Australia was so passionate about strokes and figuring out what causes them how many people better after them? And I don’t know if that I don’t know if the US has much like that honestly if they do I haven’t ever heard about it. So I think the US is still stumbling through most of it.

Bill 55:49
Yeah, there are a lot of researchers that are working and doing amazing work in the US. And especially the I think it’s the Heart and Stroke Foundation in the US that does really good work in that space. But there’ll be a ton of bodies that really focusing on neurological interventions, or how to help people having neurological issues, you know, what’s really bad about what they do, they don’t do a real good job of advertising themselves.

Bill 56:17
And of letting people know that they exist. Because they’re so focused on rehabilitation and learning new things. And, you know, discovering new discoveries, they’re not really good at telling people about the things that they’ve discovered. And when they do discover them, their version of Instagram or whatever is some medical journal that only doctors read.

Sarah 56:41
Yeah, trying to get through those is impossible, like, like, I didn’t even know what neuro plasticity was until, like, within the last few years. And that’s something that they’ve apparently known about forever. And they didn’t ever put it in an easily read Instagram post, like our attention spans are like, shorter and shorter, the more modern day becomes more overwhelming with all the information out there, our attention spans are too short to read that long post.

Bill 57:12
So that’s pretty much why I would say we don’t know about them. And, you know, I’ve never really been interested in neurological stuff until I had a stroke. And then I needed to know all about the neurological stuff. So I started to really focus and try and research but back then, when you and I had our stroke, it was early days, it was really early days, 2012 there was nothing around and I was looking everywhere for that stuff.

Sarah 57:39
I was too yeah, there was nothing.

Bill 57:42
So that’s kind of what instigated me to get my act together and get the ball rolling on my podcast now I’m curious, though. How’s the future looking for you? What’s, you know what’s coming up, that’s exciting that you’ll be doing or going to continue to do how things evolving now.

Sarah 58:04
So I moved to Utah to do the things that I want to do. Nashville is great. And I loved it. It’s just like, I had to drive three hours for a hike and ABR Amputee Blade Runners were phenomenal in getting me up and running. But Utah has this place out here called the National Ability Center.

Sarah 58:20
And what they do is they work with people with disabilities or PTSD and help them either get into outdoor rec or get back into outdoor rec and so pre-stroke. I dabbled in snowboarding sucked at it dabbled in mountain biking terrified me. But now that I know that I’m poststroke and post-amputation like I can start doing these things and I’m like I want to go out and do this.

Sarah 58:42
And so actually the double amputee that I saw earlier, posted has experienced that and I already want to move out to this coast anyways because humidity is like the worst thing ever like Nashville has. So actually targeted Utah so that I could work with them and I started snowboarding with them.

Sarah 59:01
I found out I can’t do that because my upper limb but I got to try at a much cheaper rate than I would have if I had gone out and bought everything and tried on my own. So I also got to try mountain biking with them. Same issue with upper limb like it just since my left side so tight, everything that I do especially with an adrenaline rush like my left side like immediately like tenses up and then I just fall over.

Sarah 59:27
But I still get a trial this which is really fun. I went cross country skiing like week or two ago. That was really fun. I’m going to try that again because I actually I only fell because I really get excited and then I fall but like my strokes I was fine with that. So I’m excited to try that again.

Sarah 59:44
Hiking, I love to hike I love that I can hike again. My significant other and I we go on hikes as often as we can, you know seasons out here so like it’s not like just constant like rain or hot or like I just wanna go outside and play. That’s all I want to do that’s all I wanted to do, like I have two dogs now and I have my significant other, we just come out here we just go outside to play and we’re in such a great area for it.

Sarah 1:00:15
And the NAC is just like such a good resource to like, let me try it like, I’m gonna try Archery with them. I’ve never done it, but I’ve always wanted to try it. And so I’ll do that and like horseback riding and like all this stuff and like, my upper limb is definitely the constraints.

Sarah 1:00:30
But now that I have amputated my lower leg and remove that, I mean, there’s so many new things that I can do, like so many things that I can do. And the amputation itself is called ertl amputation, I guess I checked on this a little bit because I have had people reach out to me before about the amputation and stroke all that. So it’s an ertl amputation, it’s not conventional.

Sarah 1:00:54
So conventional amputation, they amputate the foot and they leave the two bones, the tibia and the fibula. And they just leave them free floating. So they basically are just there to like tear up soft tissue. So the ertl does is it takes one of the bones that amputated and it reconnects them. So they use tightline and reconnect them so I can like impact. Like I have a stump that I can just beat.

Sarah 1:01:25
And I actually literally had to beat it with like roll up magazines to desensitize it. But because of that, I can be more active than a lot of conventional amputees because I have that support in my stump. And with that, I’m able to go out and try all these things and not get like the like the skin breakdown as easily and not get the Phantom pains aren’t nearly as bad as they can be.

Sarah 1:01:52
Phantom Pain is a really common thing for amputees. I always feel the foot I’ve my toes are always tingling, it hurts sometimes if most part it’s just a phantom sensation. But the ertl helps avoid the phantom pain as well. Going off on tangents now.

Bill 1:02:09
You were just talking about why you’re so active and how that particular amputation is helping you because and you wanted to share that because people ask you about it.

Sarah 1:02:20
Yeah, I have had quite a few people ask me about amputating their foot because of their stroke. And I’m never like yes, do that. But I do share them my story because it’s not the perfect solution for everyone. And it’s not, I just got very lucky that my residuals were for the most part located in my arm and my foot.

Sarah 1:02:41
So like my left leg doesn’t move as well as it did, like I do have limited mobility. And I do have limited mind muscle connection, but it’s not as severe as my foot was. So I have had quite, so every time I talk to someone about it, I just make sure that they know that it’s not necessarily going to fix everything didn’t fix everything for me. But it did it would make life way better.

Sarah 1:03:01
And I strongly encourage thinking outside of the box for how to get your life back. A stroke survivor the other day reached out to me about amputating his arm because he saw how I was on amputating my foot and I was like, dude, I would have cut that thing off. I would have asked for Bogo if I could cut that thing off easily. But it’s really hard to replace an arm unfortunately.

Bill 1:03:27
So you couldn’t possibly have known how good a decision there was going to be to amputate a leg, I didn’t think you knew how much it was gonna change your life for the better. You just wanted to get rid of the pain and if that was gone, and that would have been fine.

Sarah 1:03:43
Yeah, it was a huge risk. I mean, it was a huge risk. I owned a house in Nashville with the significant other at the time. And after we ended our everything, I sold the house, and I paid off all my debt, all my student loans, all my medical bills, everything just in case, I have made a really bad mistake and could not go back from it.

Sarah 1:04:03
So like I set myself up to possibly have to move back in with my dad and have him be my caretaker. I mean, I obviously didn’t tell him all this because I wasn’t gonna like scare him. But like I said, I set myself up to where like I was ready for the risk. And I was ready for it to go wrong if it did, but every finger and toe and everything was crossed, it would go right and it went right. So we’re very lucky with that.

Bill 1:04:31
You sure that you got lucky after being unlucky a few times. So you know what, I think you deserve that and you earned a little bit of luck and a little bit of things going your way. I mean, it’s a great message to people listening that are going through really hard time because stroke makes things a bit worse.

Bill 1:04:51
Even if you know, the stuff you’re going through is still there and then you got to deal with stroke and everything gets compounded. So it’s a great message for people listening to that. You know, there’s a bit of things to come there is a light at the end of the tunnel, you can focus on what you want to do and what you want to achieve and you can get there.

Bill 1:05:08
And yeah, I’m just stunned that what you’ve been able to go through and achieve, and I just hope that you continue to do well and play, you know, go outside and play and have fun with the dogs and enjoy a full a full life, you know, whatever that means for you. I really hope that that’s how it goes for you.

Sarah 1:05:33
Well, thank you. I appreciate it. So far, it’s been pretty good. If work would stop having to pay me to be better, go outside and play more, but I’m just happy that I can still work and do everything that I wanted to do.

Bill 1:05:49
Yeah. Sarah, thank you so much for being on the podcast. If anyone wanted to reach out to you, I’ve got a feeling that a few people might reach out to you. On Instagram, what’s your handle? Where are they going to find you?

Sarah 1:06:01
It’s Sara__Nickel. There’s two underscores between Sara and Nickel and I don’t have anything else besides Instagram.

Bill 1:06:09
Cool. I’ll make sure that your Instagram link is there so people can find it as well.

Sarah 1:06:14
Just keep doing what you do you’re already doing so much.

Intro 1:06:21
Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:06:48
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.

Intro 1:07:10
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 1:07:25
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 1:07:50
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As stroke survivors in rehab reach their plateau they are often discharged. Peter G. Levine a clinical researcher says that this is when the real work starts

Socials:

Highlights:

01:14 Introduction

Transcription:

Peter 0:00

Peter 0:14

Peter 0:30

Intro 1:01

Bill 1:32

Bill 1:49

Bill 2:06

Bill 2:31

Bill 2:34

Bill 2:51

Peter 3:26

Peter 3:52

Peter 4:14

Peter 4:35

Bill 5:02

Bill 5:24

Bill 5:49

Bill 6:16

Bill 6:42

Peter 7:07

Peter 7:25

Peter 8:02

Peter 8:17

Peter 8:37

Peter 8:55

Peter 9:21

Peter 9:50

Peter 10:10

Peter 10:32

Peter 10:51

Peter 11:11

Peter 11:41

Peter 12:03

Peter 12:19

Peter 12:43

Peter 13:04

Peter 13:30

Bill 13:53

Bill 14:14

Bill 14:41

Bill 15:03

Bill 15:22

Bill 15:56

Bill 16:17

Bill 16:50

Bill 17:17

Bill 17:41

Bill 18:01

Bill 18:34

Bill 19:06

Bill 19:24

Bill 20:00

Bill 20:03

Bill 20:08

Bill 20:12

Peter 20:41

Peter 21:09

Peter 21:32

Peter 22:25

Peter 22:54

Peter 23:11

Bill 23:33

Peter 23:35

Peter 24:00

Peter 24:24

Peter 24:41

Bill 25:05

Bill 25:40

Bill 26:04

Bill 26:33

Bill 27:04

Bill 27:29

Bill 27:57

Bill 28:17

Bill 28:38

Bill 28:57

Peter 29:54

Peter 30:14

Peter 30:38

Peter 31:04

Intro 31:24

Intro 31:48

Intro 32:07

Bill 32:26

Peter 32:41

Peter 33:03

Bill 33:40

Bill 33:42

Peter 33:58

Peter 34:27

Peter 34:45

Peter 35:03

Peter 35:20

Peter 35:41

Peter 36:05

Bill 36:23

Bill 36:48

Bill 37:17

Bill 37:36

Bill 37:58

Bill 38:10

Bill 38:30

Bill 39:00

Bill 39:29

Bill 39:45

Bill 40:12

Bill 40:35

Bill 40:59

Bill 41:24

Bill 41:54

Bill 42:20

Bill 42:45

Bill 43:06

Bill 43:31

Bill 44:05

Bill 44:35

Bill 44:55

Bill 44:59

Bill 45:22

Bill 45:38

Bill 46:02

Bill 46:26

Bill 46:45

Bill 47:08

Peter 47:35

Peter 48:01

Bill 48:25

Bill 48:42

Bill 49:03

Bill 49:20

Bill 49:46

Bill 50:07

Bill 50:25

Bill 50:29