Inspirational People with Parkinson’s, with Lianna Marie

*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.

The following Parkinson’s Path podcast is provided by Lianna Marie with All About Parkinson’s and Answers for Elders Radio. And welcome everyone to Answers for Elders Radio. And we are here with Lianna Marie, founder of AllAboutParkinsons.com and Lianna, you are the author of Everything You Need to Know About Parkinson’s, Everything You Need to Know about Caregiving for Parkinson’s, and you have an upcoming book called The Parkinson’s Pathm and we’re so excited to kind of share your thoughts with us and share all your knowledge. So what are we talking about today? Kind of a fun topic? Yes, well, thanks, Susanne. And yes, today we get to talk about something exciting, which is one of my favorite topics, is inspiration, inspirational people, and specifically people with Parkinson’s that have inspired others with Parkinson’s. We talked about in the Parkinson’s Path. We talked about having hope models and it’s so important to have people that you can look up to and who’ve gone through similar things that you have, so that you can be inspired and believe that you can do it too. So I want to talk today about we know a lot about Michael J. Fox, and how he’s changing our views about Parkinson’s, but there’s a lot of people out there that aren’t in the limelight as much and that are that are, I believe, should be famous because of the crazy, awesome things they’ve done with Parkinson’s. So but that I just wanted to tell you about it. I was few. I would love to hear stories. So here’s a guy that he’s actually sort of middle famous in the world of Parkinson’s. He’s his name is Jimmy Choi and he’s been coming becoming more famous because he’s been on American Ninja Warrior, which not everybody knows what that is. Wow, but it’s pretty intense. I know what that is. It’s pretty intense. So he’s he has Parkinson’s in he’s current is he a Ninja? He’s been an so he’s he’s been an advocate and a fundraiser for the Michael J Fox Foundation for quite a time and he’s a huge motivator for me because I’m into athletics. He was diagnosed at 27, so really young, and he was totally like, I can’t believe this, this is an old person’s disease. There’s no way I have this. So he was in denial for quite a while and you got really depressed. He wasn’t athletic at all back then. And then one day, you know, he was reading, he just was reading something that said, you know, exercise can help your symptoms. And so he he he just said, well, I’m just going to go for walk around the block and then he walk along the block and then he goes thinking in a jog around that block and then he jogged around the block and then he ran around the block and then he started doing half marathon’s. Then he did marathons and then and then he ended up getting a spot on man American Ninja Warrior and he’s coming up, I think it’s actually this week. He’s coming up on his third time on American Ninja Warrior. Are you any said? Quite. Well, yeah, and it’s so awesome to see him. People just go crazy over him because he’s obviously a huge, huge inspiration for people with Parkinson’s. But not just that, if you see what these people know. How old is Jimmy now? He’s in his S. I can’t, I can’t. I’m trying to remember exactly how old he is. Well, actually sixteen years. so He’s had that. Yeah, he’s had the disease for 16 years. So that would put him in his 40s now now, 43. Yeah, so pretty impressive. Obviously no longer depressed like he was before. You wouldn’t even recognize him when you look at his pictures from before and after. Just use a real lean, mean fighting machine and he’s just his whole thing is like what can I do today that I what can I do better today that I didn’t do yesterday, that I couldn’t do yesterday? So huge motivation and inspiration for me. And and I don’t there somebody who does know parkinsays that I look at him I go, oh my gosh, like if he can do that’s so yeah. So that’s one of my favorites. And again he’s becoming more popular because you’ll see him on TV. Another person that I only found out about this last year who has Parkinson’s is Jim Morris, and Jim Morris is famous already, was famous already, because he was actually the reason or the inspiration for the movie The Rookie and the boy rookie. So he was a famous for he was a major league pitcher and his story was he was a science teacher in his thirty five and his he’ve lost a bet with his students and they say that he had to basically try out for a major league team and then he got a spot on it, on the Tampa Bay Rays. I know it. Yeah, he got a spot on the team and pitched for a few years in the major leagues and it was pretty incredible. Store it’s a great one of my in fact one of my most favorite movies all of all time, but that in itself was very motivational. Well, fast forward several years. He had been experiencing like a lot of nerve pain and stuff and he just thought it was from all his pitching and he had been also in football prior to that and he had had a lot of concussions and so he wasn’t sure what was going on. He had a lot of kind of diet misdiagnosed symptoms that use experience and till finally he had had these symptoms for like 15 years and finally in 2013 he was diagnosed with Parkinson’s. And lo and behold they they did this, what they called a dat skin they found out that actually it was the type of Parkinson’s that’s induced by concussions, and so that was actually something very I don’t want to say it was fortunate that it happened to Jim, but Jim was already a motivational speaker because of what he’d done as an older athlete, becoming a great and and so now he does motivational tours and talking about his Parkinson’s. He actually got DBS surgery, deep brain stimulation surgery, and that for Parkinson’s and that changed his everything. So it he was very successful. He when he had had challenges with his eyesight and major cramping, all went away after he had this. So he’s a great inspiration in terms of just because he already I mean because, like I said, it was not that it’s fortunate happened to him, but he already had this great mindset of anything’s possible. so He’s been able to use that now in his life with Parkinson’s, and I have it in me too. I’m hopeful to meet him one of these days because he’s just my total inspiration. Yeah, so we are talking again to Lianna, Marie and Lianna. I love this topic and you know you mentioned something earlier. Are that I want to bring him back just a second. Hope models. I love that phrase. I’ve never heard it before. Is that like an official term? That? Yeah, I actually didn’t coin the term myself, but I had read about it a while back in doing my research on hope and that that was one term that stood out to me that made a lot of sense, that in cancer patients who are wanting to give up but they see in the bed next to them someone who’s surviving right and thriving and going I want to in mentally going I’m going to be that person right. In other words, if you see it, then you’ll believe. Yeah, and it’s not just you know, it’s not a hundred percent science, but at the same time there is science. Yeah, suggest that, you know, when we what we see is what we can become. And there’s, you know, all these examples. And there’s this woman that I also recently learned about, met online, and her name is Lynda Olson and she has this crazy story because she when she was 29, she was in this horrible train accident and she lost her legs above the knee, both so both legs and her right arm. And so she and immediately her husband said she was married at the time and he says, I didn’t marry you for your arms and your legs and if you can do it, I can do it. So he was her big push to not give up in life. Tragically, she then later was diagnosed with Parkinson’s and, if you can believe it and this person, she is just an absolute inspiration in terms of what she’s done. Her whole thing is if you’re not getting answer, if you’re not getting the answer you want, ask a different question. There’s always a way. There’s always a way and if you leave, if you look at this woman, you’ll go, oh my gosh, if she can do it, then really I have no excuse uses, you know, to fake legs and an artificial arm as well. Days, she’s very committed to empowering people with Parkinson’s and getting them to her whole man mantra is get out and do it, just get out and go, and so I really love her, and I mean I haven’t met her in person, I’ve met her online and just really love her message. So she’s another example of a hope model I think we can all look up to, I’m sure. And then there’s this guy. His name is Brett, Brett Parker. He was diagnosed at thirty eight and he again sort of young for Parkinson’s, and he was just like, well, I what do you do when you’re given something that you can’t control? He’s like, I’m not a doctor, I’m not going to come up with a cure for myself. What can I do? So his whole thing was control what I can control, and he went. You know, we talked about Jimmy Troy earlier, about the the American Ninja Warrior. This guy did something incredible in a different and a different realm. There’s this thing called world marathon challenge where you can you have to run seven marathons on seven continents in seven days. It’s crazy. What it’s crazy nuts. Okay, so most people don’t even know about this. So this guy had had Parkinson’s for eleven years and he tells his wife, guess what I want to do. She’s like, oh my gosh. She cheered her them on, but at the same time she was really nervous for him because it’s well, what if he fails and if you can’t do this, I don’t want me to be completely heartbroken, but his whole and he did in fact accomplish. It was really, really hard, but he did it and and and, just I was I’m always looking for examples of people who have done something so extraordinary. And he says, there’s no way I would have even attempted this had I not had Parkinson’s. But see, there’s that wake up call of I want to try to do something crazy, awesome, huge, and he managed to do it. Amazing. Yeah, and these are these are all examples of people who are maybe a little bit younger, and I wanted to give an example somebody was older as well, because not all of us identify with you know, in your s and s Huh, and I met online again this he’s now passed but his name is Lucien Leinfelder, and he was called the pianist who played through Parkinson’s and he battled Parkinson’s for 20 years and in his late 70s and early 80s donated his time to playing piano at a local hospital and he had been a pianist his whole life. He was like a concert pianist and anyway, so the muscle memory was still there such that he could still play even though he had right he stopped playing. He had this major tremor and shaking, but when he lay it was fascinating and he played and played and played and played literally till he passed, and he just wanted to give other people hope that you could live a full life and continue to do some of the things that you may not think you can do all the way to the end. And and so that, that for me was a huge inspiration and of course the reason why I started this whole, All About Parkinson’s and my books was my mom and she’s a great example. I leave her to the last because she she’s definitely not famous, but most important to me and had it for thirty years. Parkinson’s battle for 30 years and lived a very full life, literally 20 years, 22 years. She led a very full life and she developed, to mention the end, and so that took some of her obviously took the quality of life away, but but 22 years that she rocked her life in terms of all the things that she was able to accomplish. A daisy, yeah. So for me that’s the thing. What I want to impart on people is the message of don’t give up. There are so many people out there. I could go on and on. I do. I have many more examples in the book, but tons of people who are doing great things with Parkinson’s and you can live a full life with it as well. Yes, you can. The preceding Parkinson’s Path podcast is provided by Lianna Marie with All About Parkinson’s and Answers for Elders Radio. To learn more about Lianna’s story, her books, the Parkinson’s Wall of Honor and more, go to www.allaboutparkinsons.com