This is the machine generated transcript of Episode 60. You can listen to the episode at http://strokecast.com/MeetPete
I suffered something go terrible. And at the same time I feel like I’ve won the lottery. I am now looking at life as just this absolute free do over. Welcome to the stroke cast a generation x stroke, survivor explorers Rehab recovery, the frontiers of neuroscience and how to peel a banana with one hand. Hello Bill Monroe and welcome to episode 60 of the stroke guest. In this episode we get to meet stroke survivor Peter Evans and his wife Rhea. Peter, survived a massive hemorrhagic stroke in 2017 that left him with cognitive challenges and partial vision loss. It turned his and Rias lives upside down. Their attitudes are really amazing, though they’ve taken this horrible event and are determined to extract every piece of value from it that they can. Peter with Rhea support is using is brightening skills to drive increased support for stroke survivors. He’s becoming a regular guest contributor to the stroke gas blog. Ease become a supporter and advocate for support groups. And Rhea is speaking out about the importance of advanced directives and other documentation. So spouses and partners can most effectively support one another in times of crisis.
Their attitudes towards one another are really special though and that comes across in today’s conversation.
In this episode, we do talk a little bit about finding Peter’s skull. For those who are not familiar with the treatment, it’s not uncommon in the treatment of stroke, especially hemorrhagic stroke to have to remove part of the skull. In the case of a serious brain bleed, the blood can create additional pressure on the brain. Additionally, the trauma of the stroke can result in the brain swelling. This results in too much pressure on the brain tissue as it gets pressed against the skull. One way to relieve that pressure is a procedure called a craniectomy. It’s where they remove part of the person’s skull. When the swelling subsides, they can put that part of the skull back in place. Often survivors who have temporarily had part of their skull removed, we’ll need to wear a custom helmet to help prevent other injuries. Longtime listeners may remember my conversation with Whitney Moravian back at struck [inaudible] dot com slash Whitney about her own experience with craniectomy and cranioplasty 54 year old Peter Evans, originally from Long Island.
New York currently resides in the Marina del Rey section of Los Angeles where he lives with his wife, Rhea ended incredibly Headstrong Yorkshire terrier. They called Geronimo originally moving to La to pursue a career as an actor. Peter made the shift corporate America where he is, does French language skills and traveled internationally as he worked as the project manager of a small international team. We help launch the companies, many international websites across Europe, Australia and Japan. Peter continues to this day contributing online content for stroke resources and putting his years of project management to good use, paying it forward to all his fellow stroke survivors. Now let’s meet Peter and Rhea. So Peter, thank you so much for joining us on stroke cast today.
I’m so happy to be here. Thank you.
Yeah, and I understand you have a, a guest there in the room with you. I do.
I have my wife where you’re sitting on side of me. Ever since his stroke happened has become my right hand person. She’s like, my handler. I, what did I do before she helped me out? I don’t know. Cause right now I feel like, you know, in many ways I’m better after my stroke before. And a lot of it’s bizarre. So see how you [inaudible] hello everyone. It’s Rhea and the caretaker.
Ah, Hello Ria. That is awesome. Our, our caretakers are often, are not nearly appreciated as much as they ought to be. So welcome. I’m thrilled you’re able to join us as well.
Oh, thank you so much, Bill. Thank you.
So, Peter, you mentioned you weren’t sure how you got by, uh, before the stroke without relying on Raya as much as, as you do. So, I mean, what was your life like before you had your stroke?
I was, I call me, so kind of a type a personality. I had a highish agreed degree of aggressiveness and be editing this. I even say, um, I, I, you know, I wasn’t a person that people avoid it because I was like, you know, some, but, but I, I really was pretty driven. I look back now and I, I just walked by so many wonderful things, not acknowledging them and, uh, I can’t believe how today I feel as if the scales had fallen from my eyes. I mean the blessings that I have around me or just too beautiful and too moving it. I get emotional when I think about this new chance I’ve got because of the renewed relationship I have with Rhea and my new found appreciation for life and all the great things that I still have. I don’t focus on my deficits, I don’t think, like, no, I’m fascinated by the fact that I’m completely blind and half of my field of vision on the left side.
So I’m constantly doing these little parlor tricks to see my hand going into outer space when it comes to the left. But, um, I’m, I’m really, really happy now and I think that then I was probably missing a lot of things because I, I didn’t take the time and stroke. We really slowed me down and made me realize what was important because my, my wife’s, she really from, from when I was in a coma right after my stroke, I had a hemorrhagic stroke. I went to the gym one morning and I was doing some pull downs on it and I thought, all right, I don’t feel good. I’ll go, I’ll go step on the treadmill and uh, you know, walk this off a bit and one step two, step three. I was like, this isn’t right. Something’s not right. And it was as if like, the voice of God was playing with a Morgan Freeman kind of voice was like, go to the front desk and tell them to keep an eye on you because if you fall down you could really hurt herself.
I kind of knew, like I could just, I was going to go down and I went there and of course I say this to the front desk and you’re looking at me like, what kind of crazy man are you? Do you want us to call nine one one? And I said, yeah, I’m sorry. I’m afraid. Yes, I, I think we have to call nine one one. And it just went downhill from then. Pain was crazy. I was having this hemorrhage in my brain. I had a hemorrhagic stroke and um, I got to the hospital, I call it my wife. They’re like, you know, they’re like, you just got dropped off. You don’t even have your wallet with you. You don’t know who you are. So I’m like, oh my God. And they’re like, we’re going to send you to county general. I’m like, holy cow. Not only that, you know, it’s like get on the phone and call my wife and I’m like, honey, I got to tell you I’m in the emergency. And then that the phone is dead.
The phone went dead. Bill.
She didn’t, she didn’t know where I was. And I’m there. And they’re like, you, if you don’t get someone to vouch for who you are, you know, you’re out of here. And this all while on my head, it’s like, oh my God. I’m like, oh my God. And then, you know, I think I must’ve gone out for a while and then I opened my eyes and I see someone sitting in this chair and your voice go, hey buddy, how’s it going? And I’m like, who is that and stuff to me? And he goes, it’s Roger Roger from where I’m like, Oh yeah, Roger. I mean, I was that out. It,
no, wait, let me see how I was able to, uh, this is another sort of, I call it like, I call them mini miracles. So when Peter Hung Up, I had no idea where he was in the city. I knew that he had gone to the gym and it was many miles away in la traffic. So I was able to get hold of one of his coworkers. But Peter had just started working here and I had this vision to take down this number a few months before. So I was able to get hold of him and I didn’t know where Peter was and I called the gym and it turns out that the one guy that knew the hospital that he went worked later that day, so was able to tell who where Peter was. So, um, from then on it was a, once we got over there and then Roger got over there, you know, I was thinking, Bill, well, okay, he went to the gym and he broke his ankle or you know, he hurt his arm or you know, you think something like that.
And I get in there and Roger’s looking at me, the doctor comes in and they’re talking about brain surgery and I’m like, uh, and they said, you know what, it’s, it’s the, don’t worry, it’ll only take a month and so on and so on. So even that, to take that in, I need to think about that. You leave in the morning and then it’s brain surgery and then it got worse during the course of the day and then it became catastrophic. And then it was a nine and a half hour surgery. They said that, uh, he might die or spend the rest of his life in a coma. And they told me that news so fast. They told me that on the phone, cause I was in the ICU room and they had taken him downstairs and I thought, oh my God. And they said, I said, please tell me more. And the surgeon said, I have to go. And he hung up the journey of, from that morning. And then he had the nine and a half hour surgery until those that, and then he was in a coma for quite a while and in a Rehab Hospital for 30 days and it was slow, you know, I mean it was really intense and it was fast, you know, it was like the ground was just pulled out and the whole thing was just so shocking and terrifying. So, um,
tells me that, I don’t remember, I don’t remember any of this vague memories. And one thing I’ve noticed about the brain is when it doesn’t have information, it kind of makes things up. Like my vision on the left, it kind of makes up what’s actually over there. And when my memory is not there or something that somebody comes in and I have to question myself, I’m like, is that actually happens? And um, yeah, so she, she helped, she was like taking care of all the doctors. And of course when you’re in a coma you don’t, it’s not like you’re dreaming, you don’t remember anything. But I do have w I must have been just coming out of it and I’m there in his bed and I keep hearing this chapter from the audio book of the secret playing over and over in my head. And I said, Oh my God, I’m in the hospital is playing in my ears.
I must really need it. And that story is about this guy who goes to the hospital and they tell him he’s never going to be able to walk again. He’ll only ever be able to avoid these eyes and he’ll be at a respirator the rest of his life. And I’m like, holy cow, I must be in some pretty bad shape right now. What went through my head and I, that was my first thought, my second thought was, and Rias, they are taking care of it. She’s, she’s there making sure that I’m listening to something that’s putting the right, the right idea in my head. Like I’ve got to get out of some situation I’m in.
Well, you know, Bill too. What happened was during all the shock of it, then when Peter after the nine and a half hours, it was just always, it just, he couldn’t move at all. I mean it was just like, is he gonna make it? And what I told them was they were like, well it doesn’t look good. I said, don’t talk like that. You know, like let’s keep it up. I said, because we really don’t know. We’re all individuals, individuals. And I tried to keep a really good energy in the room, kept good music playing and let him listen to things. Cause I figured he’s in a coma. He’s not going to be saying no, I’m not going to listen to
really felt like you finally get control of the TV remote.
Yeah. And you know, when people would call, they feel been calling you. And I would say them, even though Peter was on a, I would say, no, I don’t want you crying, all that crap. Just talk to him where you were asking you to do things. Can you fix this? Can you do that? You know, just as if you were talking to him and he wasn’t in a coma. So I felt that keeping that energy and I think that that’s really important. I mean in any aspect of life. But I’m, Peter I think is near, well I don’t think he is compared to what he went through his today. This is just a little over a year ago. So it’s pretty amazing. He’s really amazing.
Awesome. You know, there’s so much stuff in that story got unpacked, I think. I think one of the things that strikes me is that as I talk with more and more survivors, so many of them, uh, describe themselves as feeling lucky because of the way things unfolded or because their stroke could have been so much worse or because of what they’ve seen coming out the other side.
I totally understand. I feel like I suffered something terrible. And at the same time, I feel like I’ve won the lottery. I am now looking at life as just this absolute free do over. So as I’m putting myself back together and putting this parts of our life back together, I get to choose. So the crappy parts that didn’t work, you know what? We look at them together and I, it’s like, well, forget that. We don’t need to do that anymore. So it is an opportunity and it’s been, I mean, I’m telling you all the good parts. It’s very, very hard. It’s very painful. There’s so much worry and anxiety that this causes, uh, not to mention I’m a young guy and in the middle of my earning years and all that sort of stuff and, you know, not at work and I’m anyway,
sure. Um, we, I mean, everybody’s life gets turned upside.
Yes. I mean,
you know, when you wake up and suddenly your life suddenly the next 40, 50, 60 years of your life now has to be completely rewritten in a moment.
It is, it’s discouraged, but I mean it does. It’s terrible, but not everything’s terrible necessarily. Um, there, there are some things that actually are better now and that’s what you have to focus on because that really is the choice, you know? Um, or are you focused on because it just, you know, villains and I think as you know, this is really, it’s on every level, you know, it’s emotional, it’s financially devastating. Then you have to deal with family and friends. I don’t know if you’ve had an experience like this, but there are times like when I’m stealing, you know, with people, they try to the side of the booklet space in their hearts, but it’s sort of like, oh, I forget things too when all, you know, when that happens when you get older because it’s, people don’t understand how, um, yeah, and that’s sort of the way that they make you feel better. And then some people just don’t want to hear about it at all. I don’t want to deal with that. So, you know, there’s a lot to, to deal with on all levels. I think what you’re also keeping my mind was that yes, it cannot be ignored. Like I said, not all of it so terrible.
Well I think, I think what’s really interesting is, you know, definitely that whole, Oh, you don’t look so sick or I forget things too. It’ll comes from a good place from folks who just really don’t understand. And I mean, even when I look back on it now and you and you start encountering, I, I’m almost two years post stroke now, but the idea of, you know, for example, just the way neuro fatigue sometimes hates me, that’s been from walking or just in the afternoon when I hit that wall and I never knew that. And I mean I’ve been sleep deprived for big parts of my life. I’ve gone 36 hours and then had to sleep. But you know, it’s a such a completely qualitatively different kind of tired that you just can’t understand.
Yes, yes, yes, yes. Absolutely. I think I’ve heard that, you know, be kind to yourself and if you need, if you feel tired, take on that. Like one of the biggest bits of advice, anyone new in stroke is made sure you get when you work out, for example, you do all this destruction of your muscles in the gym, but it’s when you sleep, rebuild the muscle and it’s when you sleep that you reconsolidate memories and brain function. It’s just so important to give yourself.
Absolutely. One of the things I like to describe it as is, you know, sometimes they shut down the freeway at night, the freeway is not doing nothing at night. That’s the only time they can tear up the pavement and rebuild it and that’s what’s happening to the brain in sleep. It’s getting torn up and rebuilt in a better way.
Oh my God. That is the major work goes on one. Yes. Yes.
The other thing that I think is really critical to take away from your story, uh, and that it applies to survivors and folks who haven’t had a stroke or really any other thing yet, is that whole issue you had with not having your wallet or not having your id because they didn’t have information about you. They were just going to throw you out on the street or transfer you to a different facility. That is absolutely terrifying. Something that should not happen and is something you know, we all need to do to keep in mind to prevent that. And if you are a survivor or have other medical conditions, make sure you have that information on you at all times. If that means you know, even a neck packet that you’re aware at the gym or wherever, that stuff is just so important.
You know, here’s a tip for everyone who’s there listening out out in the cyber world. The other thing that we really came to understand was it so important to have advanced directives and ability for your, you know, your trusted spouse or whomever to be able to make decisions for you. Because I was in a coma and we had to close on three different properties, which they, you know, it was like, how are we going to make this happen? And then at her making decisions about my medical wellbeing was kind of in question and have that in order. Make sure you have whatever powers of attorney to the need and make sure you keep your insurance card with you. You know another thing bill, I would add to that, because I’ve helped out many, I just have told all my friends, so another one I call mini miracle with Peter was when it went from bad to worse, he was downstairs getting an Mri and I was up in the ICU in the room.
So what we thought was we were going to push this minor brain surgery faster, but then as it turns out it was catastrophic and they couldn’t, you know, and then you became an emergency. Fortunately Peter was coherent enough to say to the head, the surgeon that this boy to do it, the doctor said, I’m going to need to, can you give me permission? Peter was large enough, at least for those few minutes to do that. I did not have power of attorney. And another thing I want to tell people is the paper work is free online. All you have to do is get it, get it notarized and like $10 but I think it’s very important because you don’t know when those kinds of situations come up. And I’ve given it to so many of my friends and they’re all like, thank you. I never thought about that. But just thinking about that, if he hadn’t been, that was another one coherent enough to say before he passed out again, yes, you have permission, you know, who knows? Do you know what I mean? So it’s still, those things are very important.
Absolutely. And we’ll link to that paperwork over it struck cast.com/meet Peter.
Well they go there.
So, uh, so I mean that’s a tremendous experience to go through not that long ago. So I mean you mentioned some challenges with memory where, what sort of deficits are you working with today?
So I’m the one that, I mentioned it at the top division, so the left side and they took my license deficits are, gosh, there’s memory issues that are very bizarre. They sent me for, what do you call it, a neuro psych evaluation after my head put the skull tobacco. And they assured me, they said, no, you’re not going crazy. This is where you had the injury in your brain. It’s normal that you would be having another weird deficit I have is, did I say this one is that might spatial reasoning is messed up. I, I go down the hall and I don’t remember where, that’s a real bummer because I used to be a person to be by myself anywhere.
And I think to bill, it’s the executive functioning that really I need and now we’re seeing it now that we’re doing, you know, work. It’s, it’s, it’s really deep.
I have to rely on my wife. No, I should I partner where there is so much stuff because I’m, I’m, I’m, I’m articulate and all that sort of stuff, but there’s some executive function there that I see it, I go, that’s a terrible decision. Or I’m not thinking clearly. So I have to, I have to be less arrogant. I have to be more partnering. Um, and that’s how I feel. I can cope better and know that I’m not making really horrible decisions.
That’s interesting how essentially you end up outsourcing some parts of your brain that you used to be able to do directly.
Yeah. And talking about it yesterday, my wife and she goes, I noticed that she goes, you, you things that you know, that get you the fuddled or take you 45 minutes to do, you did in two minutes before. And she said, I see it, but she,
she’s there to step in if I’m having a little trouble. She goes, she helps me out all the time.
So Rhea, how do you, how do you manage this extra workload? Because I mean obviously you’ve got all of, you know, everything just going on in your own head, in your own life and now you’ve got all this other extra medical stuff to help coordinate. And some of these things that, uh, Peter isn’t able to do effectively today.
You know, I think what happens is it’s amazing what you, what you can do. And I really see it comes down to your attitude about how you’re going to take it on. And when there were other things and I just want to share with people, make sure you have those things in order if you are health and your power of attorney, he should eat because when the whole thing slammed down then I had to do all the medical things and some of them, you know, I had to wait and all that stuff is very difficult. And then I didn’t have here at council with Peter Paying Paul after he was in the call and then he went to a month in Rehab. He didn’t have half of his skull so I wasn’t able to get any asshole assistance. So you could imagine that like every night I was like, oh my God.
Cause if you fell, yes, the school wasn’t there. And then um, it really did take a lot. Then in addition to all the other operations, well the other thing too is that because of this emergency situation, he had to go outside of our medical group. So that was a whole other big thing. They had parts, they have his skull at one hospital. And then when we got back into our system, I said please, cause you know, I’m kind of the person that gets things done. The one they call you from our current medical system and they’re like, oh you so do you know where the skull is? And I’m like, don’t tell me I got to go over there with the fuller insincere because they needed to do the cranioplasty God. Oh my God. And I tried to make light of it. You don’t have some humor with it. She didn’t find it.
I was like, ha ha, don’t you think she’s like, you won’t be coming over here with your cooler from our facility. Okay. So then it ended up, uh, so it’s things like that that you have to think about that if the deal, one of many other things. But we did get the skull issue was all we ended up putting something really great. Yeah, it is a lot. What did you say? What you’re saying? Definitely you have a great ability to keep a sense of humor. Yeah. They just kind of didn’t understand what the doctors were saying. Say that three simple sentences that a normal could understand that. And then anytime they said something I didn’t want to hear because really my feeling was there is no hundred percent I’m like, can you, it’s not like you know, the leg is broken and here’s the bone it use, how it’s going to heal. This is the brain. They really didn’t know people like the here’s probably what’s going to happen, but I liked them. I don’t want to hear that this is still as an individual and you’re still as whole. And I knew I had a feeling that Peter was listening. I’ve always believed that people that are unconscious have some way they’re hearing something. I don’t know why. I think that what I do.
Well, I mean all of that data is still going into the ears. I mean, the brain’s Pri, one of the things the brain spends the most of its time doing is eliminating data and ignoring stuff coming in through our eyes and our ears or nose to handle the information. But you know, in a coma or unconscious, there’s parts of the brain that are still functioning and may still be processing that data in some way.
I was fascinated. Student of the rings. I make myself into my own experiment. I’m constantly, I’m just observing how my memory works around something or I’ll observe how, here’s a trick I do to myself. I just look at my eyesight and they looked straight ahead and I have 50% of the left field. It’s not there. So I’ll look to my left and I left and I look at her. Okay. And now I look straight ahead. I’m looking at the computer, I’m talking to you, but I still see Rhea to the left a little bit. That’s cool. I thought I couldn’t see to the left, but what I do is I put my hand up in front of her face and I’m still looking forward. I can see her, but I can’t see my hand so clearly I don’t see her face. I see like this past impression of her face is in, is put there by my rate. I’m not actually seeing her. I’m remembering her. Does that make any sense? It’s very weird.
That makes sense. That makes a lot of sense. That makes a lot of sense to me. And in some respects, this goes back to, I’m going back to my 1990 selling inkjet printer days. What are the things we used to talk about was interpolated data where it doesn’t necessarily have a pixel but a computer or printer. We’d go ahead and guess at what that Pixel should be to give you a full image. And it sounds like that’s sort of what the brain is doing, its interpolated. It knows what’s supposed to be there even though it isn’t. So it’s just going to give you that interpolated image
is a construct are what we think we see is not always exactly what we’ve seen. The brain is putting things together and we see that the brain does the very same thing with memories because when you recall, memory is put into a kind of a, you know, this working memory area and when it gets put back, if you made changes to it, that memory, um, two years ago is now slightly different. So it’s amazing. All these things we think of it. Oh, it’s a computer. It’s, you know, you know, it’s either ones or Zeros. It’s not, there’s a lot of interpolation at the brand does.
Absolutely. Absolutely. And I think the other thing you mentioned there was so important to you about being able to take a sense of humor to this and figure out, you know, where the skull is and just be able to joke about this. I remember when I was in the hospital, uh, sharing with some folks that, uh, rolling over as a stroke survivor was harder than rolling over our 401k. So, you know, and, and half and half the people I talked to would be horrified at that. And the other half would think it was hysterical.
Yeah. I use, I’m not those reactions too. And you know, when you asked me about being the caretaker, I think dealing with a situation that is as difficult as Peter’s was, um, I think a sense of humor and my God, you have to have say like, whatever that is, you know, or however you do that.
Because the resist going way down because they can really, they can just put absolute breaks on your improvement in recovery. I have a predisposition to sort of going down into the dumps and Rias. Like she’s my guardian. She like, nope, you’re not going down there. So I told it to my mom says, oh yeah, it’s sort of like tough love.
That’s one of the things I wanted to talk about too because Peter, you’ve written about depression as a guest on the stroke cast blog. [inaudible] you tell us a little bit about um, your experience with post stroke depression. I know it is incredibly common and it is something that a lot of survivors deal with or ought to be dealing with.
Yeah, it’s incredibly common. I’ve become much more educated on stroking cause of the, the groups that I go to, and I would say quite easily, over 50% of those people there are, are suffering from clinical depression. And I mean depression, you know, has a lost thing. You have to let that go. It’s your brain, that’s where your emotions are and it’s the very organ that has been severely damaged. And Use a traumatic injury. And, um, the most important things, step number one is to recognize it’s not a failing. It’s not nothing. It’s there, it happens to everybody. I mean, everybody gets some degree of anxiety or depression after stroke because there’s a does it element that’s in some respects like PTSD. I mean, you really coming back from a very, very, very difficult injury and your partner or your, your, your care giver, your spouse, I mean goes through that with you when you’re there in the hospital, in a coma. Um, so
don’t, so don’t just sit on it, you know, and I’ll say this too at me, some more of it, but I mean like if there’s anyone listening who can identify with it and it’s more than just a fleeting thought of, of, you know, oh, it would be better if I was dead. Don’t, don’t, don’t, don’t press that off. Talk to people because you have to, you have to take care of yourself. You have to make sure that you take care of yourself. You’re counting on you. And I’m thinking about hurting yourself is not acceptable. You’ve got to, you got to talk it out and you got to get help.
Yeah, absolutely. Uh, one of the Star Trek fans are probably familiar with actor wil Wheaton, uh, who is also very public and talking about, he’s not a stroke, not connected with stroke, but he’s been very public and talking about his battles with depression, anxiety. And he raises the point that depression buys to you. So it’s your brain telling you things when it’s giving, telling you things you’re not worthless, you’re not worth anything. Your burden on a folks and beat everybody to be there if you’re going. Depression is lying to you.
Somebody said it once before and I don’t believe everything you think, you know, your brain will tell you things that, or as I wrote him some other blog article, I said, you know, there are as many versions of the truth as there are people observing it. And even the same person can, you know, don’t, don’t go for it. Just the worst one first. There are other ways to look at life and don’t think that this horrible feeling is the only, the only truth. And don’t ever fall into the trap of thinking like it’s permanent. It will never get better. No feeling ever permanent.
Absolutely. Just like the good times don’t always last. The bad times don’t either. Right. So, I mean, what would, what would you say is sort of the biggest misconception that folks without stroke have about survivors?
Well, the first thing is it’s for your grandparents. People who were in there, there are people and there are people who are, parents were, we’re young people who were still living at home with her. It is an equal opportunity,
a senator. So
don’t be ashamed about talking about it. Um,
If it happens to a lot of people and it’s not an indictment on you, doesn’t mean you’re a bad person. It’s just happening to more and more people that happens to younger and younger
bill. You know what I’ve noticed, uh, you know, sort of being on the, um, another, from another perspective, the biggest thing that I see is denial. When I say denial, I kind of want you to think about, you know, do you remember a time, way back before time when people were like, oh, those alcoholics, but it didn’t exist. Do you know what I mean? There was, I sort of see there is an awakening, but there’s a denial and it’s like, I love just happens to old people. Oh, that happens to me too. Oh, you know, there’s always that sort of thing.
Uh, thing about it, you know, I think it’s opening up now and I think with Lou Perry, you know what people are beginning to see at war, but there is sort of that, I don’t know if you felt it or noticed it, but that’s what I noticed is there’s a lot of that now. I think it is getting better. Uh, yeah, but, but it’s there.
Celebrity awareness is helping a lot. You know, folks like, you know, obviously Luke Perry, terrible situation, but hopefully it inspires some folks to go ahead and get there. You don’t double check their own blood pressure and get, you know, get themselves checked out and realize it happens. We just had the news come out. Oh, I’m blanking on her name so I’m not really going to have to link to this. But the actress from game of Thrones who plays Khaleesi, she was just talking about her aneurism and her stroke basically right after they wrapped season one of game of Thrones. And she had a second one after that and she just wrote an amazing article about it, I think for the New York Times. So I mean this is greeter awarenesses helping. Yes, there still needs to be more of that. Not that I want more people, more famous people coming out in the same way, but uh, but there needs to be more awareness that this can happen.
Yes, yes, yes. No, no. I just am thinking right now. Another part that’s really scary is that it can happen again. And it’s not like, Oh hey, it’s a done deal. You know, go get up. You know, your broken arm is better. And all that stuff. That’s sort of like, we don’t know enough about the brain. You know, we know a lot about heart and heart attack and all that stuff, but we just haven’t been studying the that long. It’s only
been the last 20 years, you know, so, uh, that’s kind of my point there. The other thing that’s interesting too, you talked about earlier how some folks can’t deal with it and back away from it. The other part of it is I think, especially as younger survivors, we scare people, which is heartbreaking. Absolutely. Absolutely. And as I’ve encountered more people through this program, we’ve gotten to, you know, you start to hear how it impacts people’s, uh, people’s experiences and, you know, folks in their twenties from students to actors to, you know, just whatever they’re pursuing and how it changes it and then how it changes the course of people’s lives. Um, you know, we had, uh, uh, you know, I talked to a Whitney Marae in a number of years ago, our number of months ago, and she’s now after her, uh, experience of surviving or hemorrhagic stroke is now pursuing her degree in Rehab Psychology. Uh, it’s, yeah, it’s pretty awesome. She is. She is, she’s awesome. To talk to Maggie Wisdom, who is an actress in Denver, has turned it into advocacy for folks with disabilities in the arts and is producing her own film, uh, about the impact of, of stroke survival and chronic pain and managing all of that to again, raise additional awareness and seeing what people are doing with these experiences to transform an alter the direction of their lives.
You can’t just stop living because your whole life, the tendency for people to withdraw. You don’t do yourself any favors. By doing that. We need a slightly different days. That can be better. My marriage is better, my wife has said I’m a different person. I’m kinder, I’m more generous. I, you know, I’m more present and I, God, I am more grateful. I just don’t take anything for granted. Anyone
was, that is fantastic. And you mentioned some of the folks you’ve been meeting through your local groups. I mean, what, what’s been your experience with, with the stroke support groups, either online or just in your area?
You know, she calls up for you, she’s called and uh, you know, when’s your next one? You know, do you need to, there’s one tomorrow. And when we went there, I was, I was so nervous, I thought, oh my God, I am absolutely going to be the youngest person here. And because I don’t have as many visible defects, I’m like, they’re going to be like, what are you doing here? You’re fine. And I tell you, we would like on some kind of brand new drug or something. We were in heaven. I couldn’t believe how inspired I was. Like all these people, all varying degrees of deficits and really different points in their recovery path. And I was like to look at all these, these marvelous pianist. I mean if, if anyone’s listening and hasn’t been to a survival group, you don’t know what you’re missing.
You don’t know what you’re missing because it is so reaffirming to see how many people are going on with their lives and having happy times and uh, learning great coping mechanisms. Then I’m really active participants in the game of life, not sitting out, you know, a bill to I want to add. When we found the meeting, it was mentioned just um, one of our doctors mentioned it and he’s like, he kind of was putting something aside, but you know, they have stroke support group and it’s here and you know, not too far away, but we didn’t get any information at that time. But what happened was like a month or two had passed like since Peter have and how things are not looking good and we didn’t really have anybody other than family and friends that was really had this experience. And then I said, oh, I remember that the doctor said. So I went online and I looked it up and I found a newspaper article and I, and it said call this number. And I was like, okay, but whoever answers the phone, she answered the phone and she was like, and it was like, hello? I said, no, I have this.
And she said, as said, as he had a stroke,
I said, yes. She goes, she was tomorrow. And it was life changing, just like Peter said, because you can see people from all walks of life and a love of people that are going through. Also, I’d like to see other caregivers and you know, you’d be surprised how well I’m sure you know how devastating it is on families. And God, I remember this one guy said, um, he looked and he looked at me and Peter and he said, you know what? He said to Peter, you really lucky. He goes, when I had my stroke, my wife said, when is he going to be better? When he’s going to be back to normal again? And she divorced him within six months. She was like, I’m out of here. And then we’ve seen, you know, with some of our caretakers who like, there’s a mother who has to care of her son with, and it’s just heartbreaking how young he is and that’s going to be the rest of her life.
This is only in his twenties. And then we seen some people with just tremendous depression, but the most important thing is that they come to the group. Yeah. I think any way that someone can reach out, even if it’s just you’re going online, uh, reaching out to a stroke to the point, I don’t know what the mechanism, I don’t know what the mechanism is of the group, but it’s something there just by, just by sharing a story of hearing other peoples, it’s, it’s life affirming. It’s really, it’s reinvigorating. Oh Gosh. There is hope that there would like dose go on and look at all these people. Oh, I look how good they’re doing. And even if, like I said, any step that a person can take, it’s online retrieval together. If there are some groups you know, in your area, whatever it is that you can do, making that effort really makes a difference. Even if you’re not thinking that it’s making a difference, you can feel it.
Yeah, absolutely. This tremendous power in community, in being heard and in recognizing that you are not alone.
The other thing that you mentioned that I really want to want to point out here is you mentioned that you were almost afraid to go to the group. It’s like, are they going to kick you out because you’re not quote unquote that enough. I think that’s something that can really happen, especially with stroke, is that we have to deal with this imposter syndrome and I know Joe and Lauren talked about that on the neuron nerds podcast a couple months ago as well, but we think that are we really disabled enough? Is our condition really serious enough? Are People going to judge us? And the answer is go, it’s a very welcoming community and you need support and you know your, yes, you’ve had a stroke, you’ve had a brain injury, you’re, you’re in the club, the sock, but it’s filled with really awesome people.
That really is true once you get there, love it.
And they’ve got great personality. Great. Fantastic. Fantastic. So Peter and Maria, it’s been great chatting with you today. If folks want to know more about you and what you’re up to, where should they go? Well, I’m not terribly social media, but I do have a page in linkedin which I monitor regularly. Whereas if you try and text messages from people on Facebook that I haven’t answered, but I’m happy to be a message or if they just want to know more about me and they can see my age. Fantastic. And we will link to that email@example.com slash meet Peter. This has been fantastic.
And that brings us to our hack of the half week, except we did a whole big round Robin multiple times in these different groups. Everybody to a person was a type a control freak or they’re, they’re welcoming collaboration and they don’t have to be in charge of absolutely everything and they don’t have to hold themselves up to these realistic expectations. Be kind to yourself. And another thing, I tend to be kind of pigheaded stubborn. I can add a touch of arrogance or something. Another thing is just don’t fine, just stop it. I mean if someone’s telling you something you don’t agree with, it’s probably true. If my wife mentioned something, she’s like, Oh, you did this and now I’m, I’m saying my knee jerk reaction. You know she didn’t have massive brain injury so I’ll take her word for it. I hope you can find the same level of inspiration and Peter and Rias lives as I do. It’s a powerful statement about taking a situation regardless of how bad it is and finding the good in it. You may have noticed that this episode is coming out earlier in the week, the normal. Over the next few months. I plan to increase my posting frequency as I work with some additional content contributors. I think we’ll be hearing from Peter. Again, I’d love to hear your thoughts on the additional content as well. You can post in the comments that stroke cast.com/meet Peter or email firstname.lastname@example.org what do you think about Peter and Maria story?
Let us know in the comments over at [inaudible] dot com slash meet Peter Checkout Peter’s stroke guest article by visiting stroke cast.com/peter subscribe to stroke cast and your favorite podcast app so you never miss an episode and of course as always, don’t get best. Get better.
Thanks a lot. I’m Bill Monroe and I’ll talk to you soon. The stroke cast. Bill Monroe and bill’s guests provide general information at entertainment, not medical advice. Please do not make any changes to your treatment plan or the execution of your treatment plan without first consulting your personal doctor or medical team. The stroke cast is a proud production of the currently speaking podcast network.