55. Stroke Recovery and Advocacy: Ralph Cortez's Journey with Stroke Warrior Radio

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Hey. Hey. Hey. Couple of quick notes before we hop into episode 55 of the Lovell Star podcast. This week in the episode, I interview Ralph Cortez. Ralph is from Stroke Warrior Radio. If you haven't heard about it, check it out. Go to strokewarriorradio.com.

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It's a great resource. Ralph's a great guy.

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It's really cool to see what he's doing in this space. We connected through a group called Stroke Oregon, which is a non for profit organization out in Bend, Oregon, and they're doing great work. Actually, if you haven't heard of them before, check them out. See about joining some of the support groups. They're doing really good things in the stroke space more just like all of us.

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So Ralph is definitely an East Coast guy. He has, since his stroke, kinda migrated west, but he's he's had an interesting journey, leads an interesting life, a lot of opportunities, passions. Again, he works with Stroke Warrior Radio. He's founder and kind of proprietor of Stroke Warrior Radio. Again, it's a resource that is great. It's a a collection of different podcasts, different stroke shows, different different perspectives. Kids say enough good things about it, but Ralph is really you know, has become passionate, and it wasn't initially. He definitely talks about the that in the episode where the first couple of years, he was doing good, but he was kinda struggling. But then he found and met some people and is is a huge advocate for supporting, educating, and advocating for stroke survivors and education. Again, he's doing a lot of great things, and Ralph really brings his passion for stroke awareness and stroke education and really community building and just cooling, like a lot of us, trying to bring more survivors together because he, just like all of us, know how hard it is to so, yeah, we'll dive into Ralph's personal journey. He's got a lot of good insights. Funny guy.

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Yeah. I can't say enough good things about Ralph, so hope you really enjoy this episode. You know, I hope you feel empowered by it. He wants to you know, to him, just like all of us, wanna provide to empower stroke survivors knowing that the journey is difficult. It is long, but it is really worth it. It's, yeah, Ralph again is truly an interesting guy.

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I'm excited for you to hear it. I think he's got a lot of great insights. I can't remember everything from the interview because I am terrible at writing down I'm interviewing, but, yeah, check out Stroke Warrior Radio. We're doing some collabs. So, yeah, I I, again, can't say enough good things, and I hope more people wanna get involved. I hope you listen. I hope you check it out, and, yeah, reach out if you have any questions from Ralph or myself. As always, enjoy episode 55 starting now, separately. So this could just be conversation, and we could kinda just get rolling. So it's rolling now. And, yeah. So why don't we get into a little bit of your backstory because we we heard a ton about me, but I I wanna hear about your story and your journey. And, you know, I know it's corny to say journey, but we're all on a journey. Right? Stroke swimmers?

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That's pretty it's pretty decent story. Eventually, I had my stroke in October October 23rd. I'm coming up on 9 years on October 23rd.

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I had a ischemic stroke in my brain stem, infected my left side, my speech, my, swallowing and stuff. I didn't realize my eyesight was bad. The car, I didn't know I was at the bed. I just I thought I worked too hard that week, so I took some Ibuprofen and went to bed. I called the ambulance the next morning because I was even worse trying to get around. My whole left side still wasn't working. And, the ambulance driver me driver asked me, do you wanna go to the hospital? And I said, wants to go to the hospital. Do I have to? You know? And he said, no. You've already had your stroke, and he left. So I was fun.

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Yeah. Exactly. I was like, oh my god. Really?

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It so and it didn't get any better. It didn't and I was my headache was So I, called another ambulance, and I had called around on the floor and packed the bag because I knew I had to go to the hospital.

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I looked up on Google about stroke and figured that So you didn't realize you were having it?

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Yeah. Exactly. Okay. So they immediately took me to the a stroke center, which was fabulous for me. You know? But it was too late for the TPA or anything like that. So I really don't remember much of the first couple days until my daughter got there on Monday. And they put me in physical therapy. I was on a wheelchair, then I got out of the hospital with a walker.

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And I was on that walker for several years, about 6 and a half year 6 years. And then I got on a cane also. And, after six and a half years, a physical therapist, I found out at 7 years, I needed a speech language pathologist for my swallowing issues. Nobody ever told me that.

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I found out at six and a half years about an AFO. Nobody ever told me that either for orthotic.

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So I got that. Made a huge difference. Within 6 months, I was on a water treadmill, wasn't using a cane anymore, wasn't using a walker or anything like that. And I'm now I have no no implements whatsoever. Nice. No no hand?

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No no nuts? Or just in terms of the lost the hands after an acupuncture for 6 months of acupuncture on this side, and I got my hand back. Nice.

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You know, I still have balance issues. I have cognitive issues with organization, which is really tough for me because I got so many things going on at once. You know? But, you know, I'm I I I've come to the conclusion. It's the most difficult thing I've ever been, but it's become the most rewarding. Yeah. So real quick before we keep going, what were you doing for work prior to your stroke? Because you mentioned that you thought you just had a busy week and just had a lot going on. So I was a contractor. I was, building. Okay. And I had just I just gotten a really nice track for a summer camp, remodeling all the cabins. So in that particular week, I was on my 7th, 8th, and 9th cabin, and I had gotten 2 roofs done and 3 porches. It might be vice versa.

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So on Friday, came home and It's interesting because, yeah. I'm sure that must have been frustrating after your stroke not to be able to because I used to be in the woodworking myself and I like, for years, even now, still I'm a lot better, but I can't, like, the fine motor skills, like, hold a screw or just, you know, like, I do it, but I probably shouldn't. I'm, like, on the table saw and I, like, I'm like, should I really do this today? Like, do we wanna play this game? You know, things like that. It always, makes me weary. But, of course, I found out though is and it took me over 7 years to find out. I just started doing this again. You know? I made adjustments like magnetic screwdrivers and Phillips, you know, and I just took it slow. Took me longer to do things, but I started to relearn those things again. So it really helped me just by doing what I always did. That's a that's a good point. Like, a lot of us, myself included, it's like, you just you get frustrated in the early days, but then after a while, like, it makes sense. And I think people have said it along the way, and I think I heard it. But, you know, there's this weird thing where you you know it and you hear it, but you kinda just hope magically everything will go back to normal one day. Just saying because, where is it going with that? Because, yeah, because one day you kinda just wake up and you're like, well, if I don't try to do it, I'm never gonna like, that magic pill doesn't exist. That that breakthrough doesn't exist. You just have to really as frustrating as it is, it's like like when you're like 5 or 10 years old and like really just learn the basics again. And, you know, I think when you force yourself to do it, it's very frustrating, but I think it can be things do come back, like, it doesn't take as long as it took your entire life to learn something. You you know, the first couple of days feels like insane. You feel like what what?

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Like, how how was I able to do this? I remember I remember when I had my stroke, I was 37. And it's like, you literally one day you're walking around totally fine. The next day, it's like, oh, well, you've lost this game back to square 1. Like, it's it's it's wild. Like Yeah. You say that because I one of the negative things I felt like in the beginning in the 1st couple of years before I met of the structure of our squad was was I'm a toddler again. Yeah. You know? But that and and I took that as a negative connotation at the time. But eventually, I came to the point where yeah. I'm a toddler again. I need to relearn this stuff. Yeah. Well, you're an advanced toddler. So, like, it's again, it's, like, it's annoying because I actually had a toddler. I had my my youngest was, like, 4 when I when I had my stroke and I was like, alright. Well, I'll use him as a baseline. So, you know, and, like, over time, I think you realize, like, okay. Yeah.

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Because you had that life experience. I was 37. You were, you know, in your fifties. Really? Yeah. Yeah. So, like, it it does kinda translate, but it is kind of slow and annoying. So you said you mentioned a couple of things that I wanna talk about too because I've explored acupuncture and everybody has varying results, but I'm curious, like, well, a couple of things because you said, like, you were in a walker for several years. Probably, to be honest, 6 years sounds like a lot longer than I would have expected, and I'm sure now you've met others. To have a walker is pretty surprising just because, like I said, you're right. The walker wasn't the total of 6 years.

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The walker was probably 3 to 4, with the cane the last year and then on to the cane after that. Right. But what so because do you feel like you had people and systems in place, or were you just, like, very reluctant to kind of push away from the walker? Because I know I had that issue with the AFO. Like, I had my AFO on for probably a year longer than I needed to. And my therapist one day is just like, can you please take that off? And she, like, took it out of therapy one day and she's like, enough. Like, you gotta just do it, you know?

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So I'm curious to hear a little bit more about that. Yeah. I think I think I probably had it about a year too long, but I was afraid. Yeah. Fear has played a real big part in my recovery. That a good part too because I was I had a sense of urgency. I had to get things done because I didn't know how much longer I had to live type thing. You know, I thought I had suffered ventricular tachycardia in 2001, saw the light in the tunnel three times, you know, visits. So, you know, it was I I had to deal with that fear, and I stayed on a walker because I was afraid. Yeah.

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Yeah. I've actually encountered that with, Pacifica told you on your show that I got into running a couple of years ago, and it's, like, even still today, push myself a little farther because it's, like but it's always a double edged sword. Right? Because it's, like, you wanna be safe. You've come this far in your journey. And it's like, I don't really wanna do stupid something stupid that, like, cut cut, you know, puts sets me back from where the progress that I've made.

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So it's like, you know, and running at my age.

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But it's like, I don't need to run a marathon. I don't wanna run fast. I I'm just glad I enjoy it after hating it my entire life. Like now I'm just like, I enjoy running and like, but there is a point in which you kind of want to improve. And it's, it's interesting because I I have that same fear sometimes. It's like, well, I could run, like, 9 miles an hour on the treadmill, but 1, like, 2, who needs to go that fast? And then 3, it's like, yeah, well, I could, but I also don't wanna trip or, you know, all these things that go through my head. So I'm a little reluctant sometimes, but that's a good that's an interesting topic because I think a lot of people don't think about these things even if they have a good therapy team.

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Sometimes the therapy team too hard and, you know, there is a balance, right, between pushing too hard and I know you are from the East Coast just like me, so we have a tendency to push insanely hard. Right? And then it's like all of a sudden it yeah. I mean, I did this week. To be honest, I fell for the first time the other day, in forever and it wasn't yeah. It wasn't bad. It was just I was playing with my son and we were playing baseball and I got a little ambitious. Like, I I thought I should jump. Like, I should jump to get a ball. Like, why? Like, I should just let the ball go over my head. It's not that big a deal. Right. And I jumped and it it was a fall because I I wear a size 17 shoes. So it's like Jeez. I landed. Yeah. My feet are big. Right? And it just, like, a little bit of balance issues, but it's like my foot just kinda got I I think this could've happened if I had a stroke or was a stroke, so I ever had MS or not. Like, this could've happened on a regular Tuesday to a regular guy. It's not but I just happened to be as it was annoying.

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Well, yeah, you said to a point where you have to pay attention to how you do things. Yes. That is a very good point. And I Well, I I I realized that, you know, for this I started a job at 6 and a half years. I'm and, it was running a storage facility, and I had to do physical work. So I do landscaping one day for 8 hours and knock my knock me on my ass for the whole weekend. You know? So Yeah. Now I set my limits to 3, 4 hours in that physical work. You know? So Yeah.

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Experience for me. Yes. And I think the important thing to share with everybody that's listening is that, like, this doesn't matter how old or how wise or how young or whatever. Like, you just it's just it sounds corny because everybody says, especially in the doctors' offices and therapy teams are, like, that you do realize eventually as a stroke survivor, like, things take time and things are annoying. Right?

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Like you said, the things that you used to be able to do, you're now able to do maybe or you're working towards it, but it's like you have to think it through more which makes it all the more frustrating, but I'm hopeful, you know, I'm into my recovery, but I'm hopeful that one day I will just be able to do things without thinking about them as much.

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But again I mean, I've gotten to that point, you know. But it's it takes time. You know, and a a lot of my recovery too drivers. My anger was huge. And then I had attending physician versus a neurologist with 30 years experience. So I I wound up throwing the attending physicians out. So, you know, these are it's there was a whole lot of stages in there that I was so angry that even harder Right. Which, probably slowed down my progress some, but also gained some progress. Yeah. Again, it's yes. So that weird double edged sword every time. Yeah. That frustration was there, but there, you did well anyway. Yeah. What you mentioned earlier the hand difficulties in the beginning with your your stuff. Yes. And I wanna go back to the acupuncture we Oh, yes. I'd love to hear your experience about that because I think it's it's something that I looked into, wasn't covered by my insurance where I'm at. So, like, I kind of held back, but I'd love to hear kinda your take. Was it or was it dry needling? Was it both? It was both.

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The facility I was going to had everything pretty much all in one place, physical therapy, acupuncture, mental health, everything. And I tried it out for pain for, you know, I had never done it before. I because I I don't like designer treatments, designer illnesses. You know? I think I think that East Coast comes out in us and we're like, no. That's that's that's stuff for the other coast. So Yes. That's an excuse. Right. That's yeah. That's the excuse I use too, and then it turns out there. Yeah. But, you know, I I started with pain, and it it started to help. You know, the the pain in my legs from the neuropathy, those kind of things that I had. And then, I I said, you know, the shoulders really bother me. The left arm's still not lifting up much as I should.

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And he says, well, let's give it a shot. So he started doing stuff up here. And, in about 6 months, all the numbness went away just like that. Wow. It was weird. So that yeah. That's that's interesting because so it's it's it wasn't really so would you say there? Like, you said 6 months. So, like, did you start to notice things, like, 2 months into it, 3 months into it, or, like, is this A couple of months, I started to get the motion in my hand back. Right. Then after the motion in the hand, I started to feel my forearm again.

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You know, so it kinda gradually went up, and then gone. You know, we continued it for about another month to make sure, but it it helped me. Right?

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Yeah. That's actually a really good point because I think sometimes we get to a point, at least I have, and I've noticed this, where, like, they'll feel pretty good on this thing. But I gotta remember to, like, stick with beyond where I think I'm good just to make sure, like, you know, and that obviously depends on what you're doing, but, like, yeah, I think that's an important point too because so often, like, you're like, oh, well, this is good. Let me just stop. And it's like, no, don't stop.

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Like, maybe do less, but maybe, you know, keep it in the toolbox because you don't yeah. Well, and the the thing that happened happens to a lot of us is your therapist or your doctor is gonna tell you it's 6 months to a year. This is good as it's gonna get.

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You know? There's another angle point for me. You just challenged me. So the kids, You know?

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And they took away my hope, you know? And that fight was so important to me that I had hope.

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And it took me a very long time to get it back. But once I did, I tried alternative methods.

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I now go therapy. I've gone back to it. I go to a chiropractor and a masseuse.

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You know, those helped me a lot with my balance. Right.

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I exercise at home, joined the gym. You know, there's if you have an idea, try it for me. That's that's an some people some people I've talked to disagree, but I'm all about that sort of trial and error. Right? Like, we joked about how we're very East Coast guys that Yeah. Sometimes you hear things that are a little bit more West Coast or just things that just traditionally you wouldn't necessarily pay attention to and you might ignore often. Like, I think that's super important because I've learned that in my recovery is, like, everything I thought I knew isn't really true. It's like you gotta try things because you because the brain is so complex and all the deficits are so unique to your body, your your age, like, so many factors just don't know. Know, like, breath work for me is, like, I thought it was bullshit for years. And then I'm like, you know, and now, like, 2 2 years into running at starting at age 39, now 41. And now I breathe and I focus on it every day, and I I never would have thought this would be the thing that really, you know, I always credit it as the kind of pivotal. But going back to you, so you said the first couple of years, you had that walker. I'm curious because you're now still doing therapies. It seems like you're doing a lot of stuff. Was there have you been doing that all along or were you did you find that you were a little bit stuck for the 1st couple of years and, like, it seems like things shift kind of on what I know about your story. Yeah. I I it was about 6 months in before I started physical therapy in Pennsylvania, then I moved to Colorado Springs. It took me 5 months to get into a new, therapy place or Okay. Medical place.

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Insurance prohibits Right. You know, all the it's hard. Yeah. All the insurance bullshit. Yeah. And, when I finally did, I I got an incredible physical therapist. Or that made such a difference in my life.

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I mean, she had me climbing upstairs, all of that she had me going backwards up and downstairs. So, I mean, she was awesome, and then she retired. Uh-huh.

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And then I got the lazy physical therapist to put me on a bike and walked away. You know, do that for 20 minutes, then we'll walk on the parallel bars for 20 minutes.

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You know? So it took a while for me to click, and it was an accidental thing, I think, that I went out out of bed one morning. I just walked to the sit walked to the counter to make my coffee. And it was like, what the? There's no cane. There's no walker. You know? So there was I started I learned that short distances at that point were good without, and I just built up the distance longer and longer and longer. You know? I just kept trying, and I started to believe in myself again. That's, that's a good point. I think that's a good lesson for people. Again, it's kinda like it's not in this case, it wasn't specific trial and error, but I think it speaks to that thing. Right? It's like you sort of you know, it's not great to have these kind of therapists. I've certainly encountered a few a few, you know, certainly when you have a fill in for a day, they may just, you know, they may not wanna be in my case, I've had a fill in where they're, like, ride the bike, go in the parallel bars. It's not a great day of therapy, but, you know, it it doesn't happen often. And I know it's just because they're not used to me, so they don't wanna make any major mistakes when it's still filling.

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And I forgot where I was going with that. But, yeah, I think it's it kind of is a blessing and a curse when you have these people step in to try to help you because it's like you're like, well, they're not doing anything.

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I think I gotta figure it out for myself, and I think that's kind of a light bulb moment. Yeah. It took a few years to put out some of the ideas. You know, I thought I used that anger and turned it outward instead of inward. I got rid of suppression. You know, another thing that triggered me too is I think it was four and a half, 5 years. I got a picture that somebody took of me while I was sitting on my sofa, and I had I don't know. Because of the strong physical or whatever it was or the meds, I got up to £280.

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And I got this picture of me sitting on the sofa, and I was like, oh my god. What the hell happened to me?

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You know? Because like you and I talked about before, we were athletes.

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You don't Like that. So that that was a big trigger for me too. Yeah. That's interesting.

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That's, I guess, yeah, that does happen a lot with stroke survivors because, you know, we get sedentary. Some of that is just physical limitations, especially in the early years. Right? Yeah. Even if you're focusing on your diet, walk just like a normal person every each and every day, just a little bit. Not even talking about going to the gym and exercising, but if you're really pretty immobile, it's it's difficult to really figure out how to work out in a wheelchair. How do you how do you stay fit if you're in a wheelchair or on a walker? It's not like you wanna go for a 10 mile walk with a walker. That's insane. Same things, but I don't even think I had to attempt that. But, you know, one of the Hard things too. I'm sorry to interrupt. One of the hard things too was cooking. You know, I was single.

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You know, I didn't have anybody living with me or married or anything.

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I was single, so cooking was love to cook. It was so damn difficult. They finally gave me a stool to work at work at the counter and oven. But what wound up happening as a result of that is I was ordering fast food. Oh, okay. You know, delivery, junk food, all of that. Yeah. Processed foods.

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You're you're what? You said 9 years out now? Yeah.

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9 years. So even 9 years ago, I don't think I mean, I guess food delivery, like, today was starting, but probably not to the quality. Like, now there are more options or more delivery services are it's more expensive, unfortunately, but better quality options. Even if you're in more, you know, remote places, you can kinda get something usually, or you can even get groceries delivered. Yeah. Well, that that was you know, I was in help, with their home care.

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So they they want me groceries, but I always order processed foods. Yeah. Yeah. That's a that's an interesting thing. It's, stroke teaches you a lot, I think. I think I've also become more aware of what I put into my body. Like Yes. In a lot of ways, it's like, you know, you know, we're a little different. I have MS on I don't think it's terribly different different. It's like you already feel kind of crappy and, you know, probably, like, it takes you were talking about massages. Like, it takes a little bit to get the body going in the morning, getting ready for the day. It's like you need or at least I need, like, an hour of, like, stretch got out of the bed. So I can I have a pretty good quality bed, but it's yeah? It's a lot of, like I say, I always say it's a lot of unfucking my body in the morning. It looks just yeah. People don't realize the work it takes to kinda just get going most days. Yeah.

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It's getting stronger. Yeah. But it's it's it's a lot of effort, and so putting quality is kind of important. So it's like, you know, as much as I want to eat an entire pizza and certainly could, you know, I have to very much tell myself, nope. Like, no pea like, you could have a slice, but you can't have 2, 3, 4, 5, or 6 anymore or the whole damn pie because you just want to feeling shit. And it's like, I don't wanna work on top of the work that I already do each and every day. So I think that's That's what I mean. Right?

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Yeah. Yeah. And, you know, it can get expensive. It's sad that the state of the affair like, just say the things now is, like, the better quality, healthier food is you're almost paying it x by eating better healthier food. I mean, there are obviously ways around that, but generally speaking. I was like, let's say gluten free. They charge extra for gluten free when they're taking something out of the ingredients. Yeah. Doesn't that mean you reduce the price? Yeah.

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Even even if you just I I you know, one of the things I like to do pretty regularly is go to the grocery store. It's just one of those dumb activities I like, in my forties. I kinda like to do the shopping. I like to do I I have always been in charge of the shopping in my house. And now that I don't have to ride the motorized scooter anymore, you know, it's it's enjoyable again. But you're like, yeah. I just want some, like, leafy greens. It's like, well, that's gonna be 10 times the price of, like, you can get this shitty, you know, and there are hard quality frozen, but it's like the frozen stuff that has sauce and all the stuff on top of this. Like, the good greens is, like, cheaper getting a bunch of spinach. I think it's it's wild. It's Yeah. It's crazy. I mean, the Yeah. It's so hard to do it with what they're selling now, but they can't be done. Yeah. I passed the £80. It took me Yeah. 2 years, but I lost the £80. So That's, I think a lot of survivors don't realize that, you know, again, when you're immobilized and you're kind of gaining weight, even though theoretically, you might be losing weight, but you're gaining some mat or, you know, you're losing muscle weight initially, especially if you're in a wheelchair, you're not doing a lot of exercise. But, yeah, it's, it's quite a conundrum. I I I don't wanna go down any conspiracy theory routes, but I think it's wild to have a few food industry, like, almost does the exact opposite of what you would hope and expect.

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Yeah. You know? But that's a whole other topic for another day.

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Well, can I talk to there comes a point where self advocacy becomes so damn important? The research you do, the people you talk to, other strokes survivors, the medical people, the physical therapy, all of those things. I mean, I didn't find out, for example, until 7 years that I needed.

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Right. I was like, what? Why didn't somebody tell me this?

00:31:45.599 --> 00:32:00.273
You know? Yeah. Yeah. It's hard. I mean, that's that's a good kinda segue into some of the things I wanna talk about is, like, you do have to be your biggest advocate, but I think a lot of people early on do not realize this. I was lucky.

00:32:00.815 --> 00:32:04.173
You know, my sisters are both younger than me, so they were in their thirties.

00:32:04.173 --> 00:32:07.548
Also, when I had my stroke, my parents had already passed.

00:32:08.250 --> 00:33:10.079
So they were very helpful and the place they went was very helpful and, like, they're like but I quickly realized when I came out, I was like, shit. I'm on my own. There's nobody. There's my wife and my 3 kids. My daughter was 6. My 2 kids were other kids were in preschool and kindergarten. Like like, they weren't very helpful. You know, my daughter, thankfully, in Florida can drive at 16, so that was very helpful. But my wife, you know yeah. It's a whole thing, but it's, it's wild when you get out. There's not a lot of resources, and that's I think that's kind of what you're trying to do. Yeah. What a lot of survivors are doing, and we're trying to kinda I know you and I have talked about this, how we kinda bring things together, and one of the things that you're a part of is is kind of how we met through Stroke Awareness Organ, which, you know, is a really interesting thing, if you don't mind talking about that a little bit. Let's chat about about. You know, I participated in a group a couple weeks ago, but, yeah, kinda what you do there, and then, obviously, we can get into to what you do outside of that.

00:33:11.099 --> 00:33:36.839
Well, when I came, I was in Colorado Springs, as I said. And I was by myself because I moved over with my daughter, but 6 months later, her husband got it. So I was on my own for several years. And my son lived up in Bend, Oregon, and he was Okay. Renting storage from a place, and he did some work for the owner of the storage facility and the managers were retiring.

00:33:37.619 --> 00:34:27.920
So she interviewed me for the job. Like I said, I hadn't worked except for part time cashiering job at all. And, you know, other people were in the in the interview, and they were rolling their eyes because her and I started talking about stroke. She has had a stroke as well. So and she told me about Stroke Awareness Oregon. She was the founder of it. So, when I got up here, she immediately got me involved. I learned all about Stroke Awareness. She got me involved. I was out, getting donations of gift cards through auction on the website. You know, I started getting involved in activities to support groups.

00:34:28.380 --> 00:34:59.730
That was the first time I was ever in a support group. And, oh my god, what a difference it made. I wasn't unique anymore. You know? It was just standing on how different it is for everybody, but how similar it is as well. The mental aspects are there. You know? The physical aspects are there. They're they're different details, but they're they're all there. And other people can help a lot. Yeah.

00:34:59.730 --> 00:35:18.010
And, you know, I think what the disconnect a lot of times happens is, like, again, we're we're in you know, I think you were an inpatient, like, you went to a bunch of therapy places, but you didn't really have you know, again, it's great that there are therapists. I mean, these people are amazing. I I love every nurse.

00:35:18.010 --> 00:35:29.144
So most that I've ever worked with except for one don't bother me to this day from but honestly, like, I love the nursing teams, like, the staff. They were helpful. They were amazing. But yeah.

00:35:29.445 --> 00:36:21.755
Then you get out and you're just like, okay. Now what? Yeah. Like you said, you had your daughter with you for a while, but she moved away and you're kinda just left to your own devices. And it's like, it's a disconnect between these facilities that are are really helpful and they're great, but it's like they have to move on. They have other patients to treat. Totally understand that aspect from the business side of of these inpatient rehab hospitals, but, like, the resources after are just they're not there. And I'm like like you, you were able I I don't know if it was Lani Lani or somebody else that you got, but okay. So, yeah, you connected with her. So yeah. But having that group and that support group is so important and is, is wild to me that there's not more of them. It's wild to me that, like, you know, I wanna help. Right?

00:36:21.755 --> 00:36:28.795
But even you and I, we we both been survivors for now over 5 years, but I don't think we connected on social media till last year.

00:36:28.795 --> 00:37:02.989
And I'm sure I remember right? We I had reached out to you last December, and I'm sure I got preoccupied with the holidays. And then, like, I wind up meeting, Lenny Lonnie through places, and she kinda reconnected us. But, yeah, it's, but it's it's frustrating because there's things there's stroke starters really generally, the ones I've met at least, they wanna help. Right? They want because you know Well, that's that's so gratifying to be with other strokes of virus because they are so that's your commitment. Right.

00:37:02.989 --> 00:37:06.769
Making sure new strokes of virus don't suffer the way we did.

00:37:07.230 --> 00:37:36.400
Yeah. Yeah. You know, it's crazy. Lack of knowledge, lack of answers, you know, those kind of things. And there's some great books. You know, I just remember this one thing. One of my therapists, one of my speech speech in early 2020 when I was an inpatient before COVID happened. And she told me, she's like, you know, you're the first first survivor I've ever seen buy a book on stroke or and buy a, I bought a book, you know, this is pre couple of years of 2020.

00:37:37.659 --> 00:37:51.885
I bought a book, to help my speech practice these words, and they did you know, I could have probably asked somebody to find a bunch of words to practice on Google, but, you know, I couldn't type back then. And, she's like, you're the first person to ever buy a book.

00:37:51.885 --> 00:38:17.085
And I'm like, really? You've never had a stroke survivor buy a book to practice, like, words and speech and therapy? Like, nobody suggested that to anybody. Like, Amazon could deliver to the stroke facility. You know, it's it was strange. It was, yeah. It's just, I want to get to your point, I want to get my handwriting book to recover my handwriting.

00:38:18.264 --> 00:39:12.284
I did too. And I think too that people don't tell you as stroke survivors. Like, I don't know if it worked for you in the beginning, but I couldn't even hold a pen. So I'm not really sure why I bought the book to practice handwriting because it couldn't even hold a pen. So, like, there are definitely steps and progressions, and I always tell people this too because I bought a lot of tools over the years. Some of them worked, some of them didn't. I think they're you know, you had, again, this trial and error. You have to be willing to kinda take a loss if you're willing to pay for something. But there's definitely definitely read the reviews on everything, but I think even what you said earlier, I always laugh about this because my therapist used to tell me to walk like like, Katie, I can't walk forwards. Let's let's let's slow it up on the walking backwards, but, like, you know, she didn't push me, but, like, you know, a year later, I was walking so well forwards.

00:39:12.284 --> 00:39:19.960
It was like, okay. Yeah. Walking backwards now makes sense because you do have to sort of there are great things about walking backwards to develop.

00:39:21.380 --> 00:39:28.440
But that's that's the takeaway here is that, like, sometimes things that people tell you may not work at a certain time.

00:39:28.844 --> 00:40:16.150
You might have to put it down and pick it up later, you know, those kinds of things. Like, I still have putty and, like, I still warm up with putty in my hand every morning because, you know, my hands are open, but my hand and these fingers like to stray off the keyboard, and it's very annoying. So, like, you know, progress is good, but it's, yeah. So yeah. So so now you're with stroke Stroke Awareness Oregon doing Yeah. I I started as, you know, just doing stuff support groups and stuff. Then I started a men's club. Then I started running bingo for fundraising forum. Then I became on the board of directors. I helped with the Randy Travis event where they came to him and his wife came out and spoke spoke, you know.

00:40:16.150 --> 00:40:25.934
So we did a lot a lot in the community. We do these Right. You know, for balance, eyesight, face, all that.

00:40:26.875 --> 00:40:41.559
And, I mean, we give out probably 10, 20,000 a year out here. So, I mean, it's a fantastic organization that's growing. Growth is still a little organization, but we're growing. And trying to spread a word, you know?

00:40:41.559 --> 00:40:49.735
Yeah. It's besides stroke survivors, there's the potential stroke victims.

00:40:50.355 --> 00:41:01.760
Yeah. That's We have to tell, hey. I didn't, you know, I didn't know. I went to bed. I could have that drug and have more difference would it have made him? Yeah.

00:41:01.760 --> 00:41:26.775
Or you I mean, there's so many things. Right? You could've had you know, had you knocked on the bed, had you had the same event but thought you were good enough, you know, to get behind the wheel of a car. How much worse would that have been? You know? Yeah. Or, you know, it's I think the other thing, it's like you need, like, you know, I joked on your mind in the hospital. The people at my at my hospital should be more aware of beast be fast.

00:41:28.135 --> 00:41:31.594
But, yeah, it's just, awareness is important. I agree.

00:41:32.000 --> 00:41:53.855
But I I tend to lean on the side of, like, helping these survivors because I think Yes. I agree. More and more, I mean, there's like, in my case, like, going back, it's like, well, if I never spoke cigarettes, that probably would have prevented the stroke at age 37. I don't know that I never would have had one, but I certainly would have helped to, get rid of that.

00:41:53.855 --> 00:42:12.079
So there's definitely benefits to it, but, yeah, it's these people that have already suffered enough or or sort of like you like you said, like, you you feel like the last couple of years, you've really kind of, you know, it gets The hope comes Yeah.

00:42:12.079 --> 00:42:28.375
The hope comes back. The hope yeah. Yeah. And that's and I think if anybody's out there listening, you know, you gotta kinda I don't know what better say, but you kinda have to dig yourself out of the hole if you feel like you're in the hole. Because if you feel like you're in the hole, you might be in the hole. Yeah.

00:42:29.639 --> 00:43:02.550
And so so, yeah, with Stroke Oregon, you do all that now, and that's that's a great team. I love to see what you guys are doing. I'm trying to kinda help out there and see if I can get just to meet, you know, Bend, Oregon. I don't know a ton about it, but then I'm I'm pretty sure it's a fairly large area. But, yeah, I mean, in terms of survivors, you have a like, how many do you guys have, like, couple hundred, would you say out there or or almost more? We know that our database is Oh, wow.

00:43:02.550 --> 00:44:48.789
Okay. Yeah. And some of that's all over the country. Because we get support group people from Hawaii, Maine, Canada. You know? And that's part of why we started I started stoke warrior radio was so that, you know, I could share all and Yeah. Give somebody else hope. You know? It's not as good as it gets. The the doctors are wrong. Yeah. And I think what's important is that, like, I live in Florida, you know, which is a pretty well established. There's a lot of hospitals. There's a lot of medical schools. There's a lot of facilities, obviously, just like, you know, a lot of things in the West Coast, but I think see, it's it's weird. You know, I'm all the way over here, but I found you guys, but I haven't found anywhere in between. And I think what's wild about it is that, like, there are people who wanna do things. There are some people who get involved, like, I mean, on stuff from the UK and Australia than I've seen really in the US. I mean, there's a few there's some people on some platforms, you know, a lot of people are on separate platforms. Everything's very scattered. There's no centralized, like, you know, I know that's a big task, but you would think stroke being that's a disability. Even I'd say, I don't know if it's worldwide or in the states or both, but it's pretty close to those numbers. There's a lot of stroke survivors, but, like, you hear more about you know, you hear I mean, I think stroke out no. I don't know if it outnumbers cancer, but it's it's up there. Right? We're talking I've seen across the board. Cancer leading cause of death and the first leading cause of disability worldwide. Yeah. Yeah.

00:44:48.789 --> 00:45:23.510
So you you would think that there'll be more systems in place like stroke awareness or organ, you know, things like I'm trying to do. Like, I have I work with a big facility here in with a lot of great stuff for acute patients, but there's not a lot of long term after that. So it's it's it's always surprising and a little disappointing, but I'm always inspired by people like yourself that are trying to spread the word, trying to help other people because, like, it's fucking hard, man. Oh, yeah. You know, it could probably you're not allowed. Yeah. It's like until you meet these other survivors.

00:45:23.570 --> 00:46:03.605
Again, it's great to have a staff and people on your team and family members, but, like, only really other stroke survivors understand what it's like for another stroke survivor, the brain fog, the fatigue, the you know, I'm not making excuses, but these are real things and, you know, I mean, if you're like me. Right? Like, I always feel like I could do everything myself, but now I know, like, I can now, kind of. But I still I need a little more time, which I hate asking for a little more time, but I need that time because I can do it, and I will do it. And I'm sure 5, 10 years down the road, hopefully, things are better. But, like, it's really frustrating when things are, you know