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Jimmy Choi's Inspiring Story: Parkinson's, World Records & Using Social Media for Good

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I am so inspired by Jimmy Choi that I keep asking myself "What would Jimmy do?" when I face even small challenges. Jimmy's accomplishments and approach to life make me feel like anything is possible—even for regular people like you and me.

My bet is Jimmy's story will remind you of the precious opportunities you have in your life, and give you the motivation to make the most of them.

Jimmy was a regular guy with a job in software when he was diagnosed with young onset Parkinson's nearly 20 years ago. After a period of denial and despair, he dug deep within and learned to manage the disease and his life with discipline, grit, and an open mind.

Jimmy found ways to spend better quality time with his family, raise public awareness for Parkinson's, and help and motivate others through a unique combination of athletic competitions (including being an American Ninja Warrior contestant and earning two Guinness World Records), and leveraging technology (both TikTok and 3D printing).

Jimmy's story inspires me to better manage the challenges in my own life, move forward one step at a time, and balance pragmatism and optimism for unbelievable results.

You can watch the video of our conversation right here, or read the transcript below.

Interview Transcript

Lygeia:

Welcome to the "AdaRose Digital Health and Wellness Video Podcast." I'm Lygeia Ricciardi, your host, and our guest today is Jimmy Choi. Jimmy is an athlete, a patient advocate, and a motivational speaker.

Before I start, I want to say, if you're interested in the intersection of digital health and wellness, and just health and wellness and technology generally, in your life, please subscribe to the AdaRose YouTube channel, as well as to our channels on Instagram, Twitter, and TikTok. So, with that, welcome, Jimmy.

Jimmy:

Hi, how are you?

Who is Jimmy Choi? (0:38)

Lygeia:

Good, it's so great to have you! So Jimmy is an athlete, a patient advocate for Parkinson's, a motivational speaker, and he's also—this is my description and I think you'll see why—a creative person who's not afraid to try new things, including using technology in new ways. And just to give my audience a little bit of context for why I invited him to participate, really two reasons.

The first is I was incredibly inspired by his story and I think there's a lot in it for people regardless of their health condition, or even their interest in particular types of technology, it's a universal human story that, you know, he's got a spirit of optimism, discipline, and relentless commitment to overcoming obstacles that really, I think, hopefully you will find motivating as a listener.

And the other reason, since we have this emphasis on digital technology and how to use it in your life, I think Jimmy is really creative in how he's used, in particular social media and TikTok, but also he's recently inspired some of his fans to use 3D printing. So there are a couple of technology stories in here that we'll touch on. So Jimmy, tell us a little bit about yourself and your background.

Jimmy:

Yeah, I'm 46 years old. I'm married and I have two wonderful kids, a boy and a girl, Karina and Mason. You know, and one of the more unfortunate things about me is that I was actually diagnosed with Young-Onset Parkinson's back in 2003, so that's, that's 18 years ago when I was diagnosed, I was only 27 at the time. And uh, like many 27-year olds, I didn't know what to do with that information, and unfortunately I kind of just ignored myself, and ignored my progression for the first eight years until I had that one rock bottom moment.

And we can get into that a little bit more detail later, but that rock bottom moment was falling down an entire flight of stairs with my infant son. And, you know, just that, that moment itself woke me up. It made me realize that I had become a burden to my family and that I really needed to, at that point in my life, take a look at myself and decide one of two things. Number one, completely give up, or number two, I can try to do something about it, even if it's just a little bit, try to do something about it.

And since that moment, that was in 2010, since that moment, I have taken the idea of doing just a little bit more each day, whether it's participating in clinical trials, or using exercise, or different methods to help me live a better life in general while living with Parkinson's, just trying to do a little bit more each day. And through that I've become an athlete, as you mentioned, which I was, you know, I was an athlete growing up in high school, but when I took that fall, that moment when I took the fall, I was 240 pounds, I walked with a cane because I kept falling over.

But since that moment, this one, this doing more each day has brought me to this point which was, which is now I'm an ultra endurance athlete. I've completed 50-mile marathons, multiple standard marathons, 100-mile bike rides, hundreds of half marathons. I've competed on "American Ninja Warrior '' four times, and I'm also currently a two-time world record— "Guinness World Record"—holder for push ups and for burpees.

What is Parkinson’s Disease and what are some challenges a person with Parkinson’s faces? (4:13)

Lygeia:

So that is awesome, and your athletic record is really impressive and diverse. And that is true, even regardless of the fact that you are at the same time, a person living with Parkinson's. I wanna make sure people understand a little bit who may not be familiar with the condition. Like, what are the challenges for someone with Parkinson's? How is it different from before you were, you know, before you had it?

Jimmy:

Yeah, the thing about Parkinson's is, it's a very slow progressive disease. So I actually don't know when I started exhibiting symptoms because now that I think back, I actually have, I have actually had symptoms even when I was in college.

So, you know, the progression of this, exactly when it started, I really have no idea and most people don't know. By the time you feel different, by the time you can feel your symptoms, you've already lost, or a person with Parkinson's has already lost, about 60% of the ability to produce dopamine. So, you know, Parkinson's, every time people, when I talk about it, people immediately think of an older person. They immediately think of...

Lygeia:

Yeah, most people are diagnosed much later in life right, 60's, 70's, and beyond?

Jimmy:

Yeah, the average onset is 60 plus, you know, and only about 20% of people who are diagnosed with Parkinson's are considered Young-Onset, or diagnosed before the age of 40. But yeah, like most people would just immediately think of the older person. They always, everybody thinks of tremors, but that's just the tip of the iceberg.

Living with Parkinson's, it's–the way I like to describe it–it's basically a slow torture. Parkinson's won't kill you, right, it doesn't take away somebody's life in the sense of death or a terminal disease, but it does slowly rob you of your ability to do things. Move, even think, even speak, so things that people don't realize that could be a part of Parkinson's. Like loss of smell, anything that has to do with movement, including bowel movement, right, these—everything is affected.

So the entire body over time will progress and it will get more and more difficult. So that's one of the things that is really hard for people to grasp, because all they can see are the tremors, they can't see anything else.

Lygeia:

Yeah, so at the same time that you're coming to grips with losing functionality, you've trained your body to gain a lot of new functionality.

Jimmy:

Yes.

Jimmy's journey to American Ninja Warrior (6:51)

Lygeia:

Talk about that, how that came about. And many people are perhaps familiar with "American Ninja Warrior." Were you racing before that? What was the path that took you there?

Jimmy:

The path that took me to "Ninja Warrior," it was actually, you know, as I mentioned when I took that fall down the stairs. One of the first things that I noticed when I started really educating myself about Parkinson's is that there's always, every study, or every clinical trial, someone is always talking about physical activity and I have a movement disorder.

And actually the best thing to do for a movement disorder is just to move, it's just to keep training your body, muscle memory, and just continuously using your muscles so that it doesn't forget how to be used, right? So, but I took that to the extreme, right?

I just, there's studies out, study after study that suggests that high intensity exercise is the only treatment today proven to slow, or even halt progression of Parkinson's. So I figured, you know, if that's going to help, I'm just gonna do it and I'm going to do all of it.

So I started with running, as I mentioned, and then I went into cycling. I mean, let's be honest, when you do something over and over again, it becomes a routine, right, it gets boring. So I started cycling, and then I started swimming, and then when doing all these endurance events became even more and more routine, so to speak, my daughter was really a huge fan of "American Ninja Warrior," and every year she would say, "Hey, dad, you should really try out and try to compete," and then I would give her all the excuses in the book.

"Are you kidding me, I would lose balance. I fall just walking to the kitchen and back, right, I don't have upper body strength. I can run, but I don't have upper body strength." But you know what I realized, what I was doing, finally, and this was in 2017, was that I was giving her all the excuses in the book and here I am telling other people, who are starting to learn about my story, and who I'm trying to motivate to start moving, that to stop making excuses, right? So I'm not preaching what I'm not listening to, what I'm preaching, so to speak.

So I took that upon myself, and I said, "You know what, my daughter is right. I've given her all the excuses in the book," and she's like, you know, "What more excuses do you have?" So I actually applied and tried out for the show really just to make her happy. But to my surprise, they called me and they gave me a shot and I did well in my first year, and then I continued to build upon that success, I continued to build upon, and learn, from the experts of the sport, to improve myself, and I think that's one of the reasons why they kept bringing me back.

What does your healthcare team look like today? (10:03)

Lygeia:

So, I am curious about something that I think is universal to any of us dealing with a whole lot of different conditions. It sounds like you had a moment, first you had a period of denial, which I can totally understand, where you just basically weren't dealing with it at all.

But then at a certain point, after maybe that falling-down-stairs-moment, you started researching. So it wasn't actually, and you learned that exercise had huge benefits in mitigating the life-limiting effects essentially of Parkinson's. As you speak, it's not your doctors who were saying, "Hey, Jimmy, have you tried running? Hey, Jimmy, you should really be on American Ninja Warrior."

Jimmy:

Yeah, no.

Lygeia:

It was like self, well I'm curious. Like what were your doctors saying, were you talking to them about this?

Jimmy:

Oh, so let me, you know, right now my care team they're completely behind me, they embrace my craziness, right? But this isn't the first team, the first care team that I tried to put together, and in fact there are still a lot of neurologists, and movement disorder specialists out there, that are a little bit more of the old school variety where they will tell people to take it easy and, you know, just get your affairs in order, enjoy your life now, be prepared to, be prepared for it, to live with the disease for the long haul.

And unfortunately, there are still some neurologists that will speak that way to patients and that's just not the way that I found to be true. When I was diagnosed 18 years ago I was told that I had 10 years, that I would be, that in 10 years I would be in a wheelchair and that my family would have to take care of me. I was never told to exercise, right?

Lygeia:

Wow, yeah.

Jimmy:

And so you're right doctors weren't telling, but today that's different because of all the research that's been done in the last 18 years, doctors and movement disorder specialists know that exercise is key, and they are telling, right from the get go now, everybody that's newly diagnosed, to get out and move. And it doesn't really, exercise doesn't undo the effects of Parkinson's, you know. For me I just like to tell people that it, you're improving your body so that your body can handle the disease as it progresses better.

Lygeia:

That makes sense. It's almost as if you're training like an astronaut, or something, you wanna be in peak performance to go against something that's beyond what you might expect to deal with every day.

Jimmy:

Yeah, absolutely, and that applies to everything in life, right? You mentioned astronauts, but I mean if you want to do well on the test, you study, right? If you want to, if you want to do well in a presentation at work, you put your work, you put time into that presentation, you put your research in, and this is no different, living with Parkinson's is no different.

And when I eventually started doing my research then I started learning the things that I need to be doing to be more successful at it. Not necessarily successful at living with Parkinson's, but living my best life with the disease.

What Guinness World records do you hold and how did you get the idea to try for those? (12:34)

Lygeia:

So in the list of your impressive athletic achievements is this "Guinness Book of World Records"—talk to me about that. So what do you hold records in, and how did you, what even gave you the idea to try for that record, or those records?

Jimmy:

You know, so I hold two world records, one is for burpees and, which everybody loves. And then one, yeah, and then the other one is for pushups. And I'll tell you what I never imagined myself to even try to break a world record. But I would say about three years ago I was still falling, even though I was training a lot, and I've become physically fit, I would still fall.

When I would run I would just tumble over because my legs weren't listening to me, and it just stops moving, a freezing gait happens, or if I'm just walking and then if I'm trying to avoid, you know a LEGO block on the floor, that my kids leave around, and to make that quick turn to the right, or the left, it often trips me up, and then I would fall. So I still fall a lot.

So I started asking myself, you know, what can I do from a fitness perspective to help me in the event of a fall? So if you think about it, that's exactly what it is, a burpee is a controlled fall. You get yourself and your body to the ground, and then you've gotta get yourself up. So I'm able to practice that controlled fall and then I'm able to build strength in getting myself back up off the ground so that wherever I might fall, hopefully I would be able to build the strength to brace, to slow the fall, and then to get back up no matter what to safety, right? So I started doing that about three years ago and I started adding that on a daily basis.

You know I talked about doing a little bit more each day, it's no different with my burpees, I started with just doing 10 a day at a time. And then next thing you know, I'm doing, you know, 20 or 30 and I just kept going from there. So what started out as a, as really a desire to learn a survival skill, because of my falls, that, doing more each day, gave me an opportunity to tell myself that, hey, maybe I am good enough, maybe I'm fast enough, maybe I'm strong enough, to break that world record.

So I trained for it, and then that became a goal of mine, and then I started training for it. And next thing you know, in training for it, I ended up doing, I would do things like the burpee mile. Where you do a burpee, and then you broad jump, and then you do another burpee, and you continue to do that for a mile. And I would do things like doing 2020 pushups, for the year 2020, all in one go, just sort of, just for training purposes.

But ultimately in August of 2020 I did break the world record for number of chest to ground hand release burpees in one minute. So that was a huge moment for me to be able to do that. And then just because I was training so much doing burpees, and pushing myself off the ground, I became really good at pushups.

So this is another opportunity that came along because I was doing something else for something completely different, I got really strong at doing push ups. And then in November of 2020 I broke the world record for lateral side jump push ups. So just imagine, imagine pushing your entire body over a line, or a barrier, from left to right, left to right, left to right, nonstop for an entire minute.

Have you always had such strength and discipline, or is this something you have cultivated over time? (16:03)

Lygeia:

That's pretty incredible. I think one of the themes that comes out as you speak is your attention to just your strength and discipline, and I love this message of baby steps and I think that's so important.

I'm curious, before you had Parkinson's, did you apply that same intensity of discipline and sort of model to other areas of your life? Have you been innately doing this forever, or is this something that you've developed more because you've had to focus on it more, or chosen to focus on it more?

Jimmy:

To be honest, it depends on who you ask. You know, so the, no, but really, I think in reality I think this developed really more post that rock-bottom, or that traumatic moment with falling down the stairs with my son, I think that my mindset changed that day.

Lygeia:

That’s kind of what I wanted to hear, Jimmy, because it means there's hope for all of us.

Jimmy:

No, there really is, it's never too late for change, right? People say it's never, when you do something new, and you do something different for the first time, you're uncomfortable, you're scared, right? Because it's new, it's different, but just like anything in life, when you do it over, and over, and over again, it becomes routine, it becomes second nature. So there's always room for change.

And actually you brought up a very good point. Parkinson's diagnosis changed my life. When I was given that diagnosis, it changed my life. If I don't make changes in my life to match the type of response, or the type of shift, right, I can't expect to improve, right?

But back to your question, I think and, you know, early in life, I was a straight B student growing up, so I certainly didn't pay attention to detail. My mom would tell you, "No, he didn't pay attention to detail."

And then if you ask my wife, I'm always forgetting stuff, right, typical husband stuff. But yeah, I think we choose, I think we all choose to focus on different areas in our life based on what we're interested in, and for the last 10 years, in the last, yeah since 2010, for the last 11 years, my interest is to survive, is to make myself strong so that my family doesn't have to fight for me.

What was your experience like with technology prior to your Parkinson’s diagnosis? (18:30)

Lygeia:

Yeah, that's really inspiring and impressive. I wanted to touch on the theme that you brought up about change, and challenges, and trying new things, and particularly in the realm of technology, because that's a focus of what we talk about at AdaRose, and I want to understand, first of all, you're not, you weren't new to technology generally, where were you professionally focused back when you got this diagnosis? Or even then, and since then, yeah?

Jimmy:

Yeah, I've always been, I've always been in the technology field. I came out of school with a finance and a computer programming degree. My first job was a programmer and I've been in technology, in information technology, ever since. I've worked from, as a programmer, and all the way up.

My last position that I held before I retired was Chief Information Technology Officer. And, you know, so I've been around technology and innovation all my life. And when I started doing research around living better with Parkinson's, I took that same approach, and the same interest in technology, when I look for clinical trials, when I look for treatment options, when I look for research that's coming down the pipe, those are the things that interest me.

And, you know, as I mentioned, I would sign up for clinical trial, after clinical trial, and whatever it is they threw at me, I tried it. I've taken pills, I've had surgery done, I used wearables, electronic wearables, to help aid in either detection, or in minimizing symptoms, and I've done it all.

Lygeia:

And are there things from those trials, are there things that you've incorporated longer term into your life, or is there some hit or miss?

Jimmy:

You know, what I would say most of it was, most of it is a miss, which is why I mean it's so hard to treat Parkinson's, or find a cure for Parkinson's, because everybody's different. What has worked for me may not work for someone else, and what has worked for someone else may not work for me. For me in terms of like, truly improvement of my life, as I mentioned, every single one of these trials always had that physical component, that has been a hit, right? I have now embraced using physical activity and exercise as my main treatment with Parkinson's.

But there are technologies that I've used, for example, there's a clinical trial, it's called the Viable Tactile Stimulator, and that's, it was very effective for me. It increased everything that was measurable about me, including UPDRS, which is a unified Parkinson's scoring scale.

Everything that was measurable in terms of the number of medications that I was taking, the UPDRS, everything improved by 30%, so that was huge. Unfortunately, it is a clinical trial, so my participation is limited in the amount of time I can spend in it, and I'm no longer allowed to use it and I'm sad because of that, right?

So there are a lot of things that I feel have promise. So as far as focusing on, on what I would use, or try, number one of course for me is safety. And number two is having an open mind going in and giving everything a try, giving it a shot. As ridiculous as some of these things might sound, it is research, there is some benefit to get from it whether it's a hit or a miss.

The unconventional use of TikTok to inspire and connect with others (22:26)

Lygeia:

Totally, so I wanna go specifically to TikTok because that is not something that most people think of as having necessarily any kind of clinical benefit, or healing in a sense. So Jimmy has about nearly 200,000 TikTok followers, probably more by the time you hear this, and how long have you even, how long have you been on TikTok?

Jimmy:

You know, I started TikToking when the pandemic started, so less than a year.

Lygeia:

Wow.

Jimmy:

You know, yeah, I think my first post was April of last year, so we're still, yeah, still less than a year.

Lygeia:

So I wanna point out something else for folks who are listening who may not have checked out TikTok. So as you, many of you are perhaps most familiar with TikTok through your kids, I am, anyway. They send me all these silly animal videos, or baking videos, or other things like that. And you know about 2/3 of TikTok users are 29 or under, and most of those are under 20.

So I wouldn't have necessarily said, okay if Jimmy's going to have an impact on social media TikTok is the channel for him, but there you are. How did you get there, and what are you doing on TikTok? What's the content of what you do?

Jimmy:

So, you know, how I got there was really, I wanted to know what my kids were watching. As you mentioned the most, the majority of users on TikTok are younger, younger people, and my kids are young, right, 13 and 11, and they were watching a lot of TikTok videos, I wanted to know what they were watching that's the reason why I signed up, really it was just to watch.

And then I started noticing that there are some fun challenges that people are putting up on TikTok and they're usually of, as you mentioned, much younger people doing fitness things that became a trend, and became a challenge. So I figured you know what, maybe this old guy can show these kids some tricks, right?

So I would, I would take their videos, and then there's an option called "duet," where you do a side-by-side with them and then I would always just try to, just try to maybe one up them, just a little bit, just to show them that this old guy with Parkinson's can still do it.

And that started intriguing a lot of people to start following, and commenting, and viewing these videos because what was hilarious was that people would say things like, "Oh, grandpa's got you beat," right? And I'm like, grandpa, am I really that old? But it, you know, people were intrigued by how an older person living with a disease can do things better than a lot of able people, a lot of able-bodied younger people.

But what I saw there was an opportunity then to reach out to this younger generation because I've always said that whoever wants to talk about Parkinson's, whoever wants to learn about it, I would give them the time, and educate, and provide my perspective on Parkinson's.

And now here I have this platform and people are starting to follow me, and people are starting to ask, "Why are your hands shaking before you do these things? Why do you look like you're moving so slow," et cetera.

So then I took this opportunity to really educate and put out videos about not only that am I able to do these physical feats, but the struggles that I have leading up to them, the things that I have to overcome to get there, and then it started educating the younger generation.

And what's really important about the young generation is they are our future, right, and Parkinson's, one of the biggest problems about Parkinson's, is that it is not very widely talked about. There's a stigma with Parkinson's. People who have it want to hide, people who have it want to just go into isolation, and we don't talk about it. I did that for the first eight years, I'm guilty of that, right?

So, my goal using TikTok, and that platform, and reaching, I realized that I'm reaching a much younger audience is that these people are our future. And if I keep telling the story, and I keep sharing this information, who knows... that one person, right, on the other end, might be the key in the future that unlocks whatever that groundbreaking treatment is for people with Parkinson's. They're out there, someone just needs to get to them. And this is just one.

Lygeia:

So that, yeah, that makes a ton of sense to me. I'm also curious about whether you've drawn, or connected into communities, whether on TikTok, or maybe on other platforms, of people who are diagnosed, whether with Young-Onset, or other Parkinson's, and kind of had that peer-to-peer sharing? Have you connected with those kinds of communities, or is it more that you're connecting with people who know relatively little about it?

Jimmy:

No, on TikTok there's definitely people who know relatively little about it, but I'm also very active on Instagram and Facebook, and on those platforms, I am well-connected into the Parkinson's community, sharing things that I learned, and I'm also a member of a patient board member of the Michael J. Fox Foundation, so we have a lot of information to where the foundation is spending their money, in terms of research, so I also share that information as well with the Parkinson's community. And that happens more on the Facebook and Instagram platforms, versus TikTok, for sure.

What was it like being featured in Michael J. Fox’s new book? (27:47)

Lygeia:

Speaking of the Michael J. Fox Foundation, I understand that Michael J. Fox recently put out a book and that you're in it.

Jimmy:

It's such an honor, when he asked me to be a part of it. The things that I've learned from Michael, since I met him back in 2013, have been valuable to me in the way that I live my life now, he has been a great mentor to me. You talked about optimism, you talked about looking at life differently, that's how he's been doing it.

And I mean, he's living with, he's been living with the disease for, I mean, for almost 30 years now, he's been living with the disease and he's still doing well, right? Of course, you're gonna hit bumps, you know, road bumps along the way, and then for those of you who have a chance to read his book, you'll get to read about his most recent road bumps, which some are Parkinson's related, some aren't, but just his attitude around how to get around it and to show that he is human, after all... and that there is, it's not always puppy tails and sugar plums, right, in his world.

But just knowing that there is another day, and that there's another step forward was huge. And he's provided me with that type of leadership ever since, ever since I've known him for that time. But to be in his, to be in one of the chapters in his book has been truly an honor for me.

Leveraging TikTok and 3D printing to create innovative solutions (29:27)

Lygeia:

So recently I understand, via your TikTok channel, you were able to help people leverage another kind of technology that could solve a very particular problem that you were facing, and that many others face too. What happened?

Jimmy:

You know, I was, one day I was actually pretty frustrated, because living with Parkinson's you have these good and bad days. You have days where I can break world records, right, but then at the same time, you're only seeing about a minute, or 40 seconds at a time into my day.

The rest of the time, 40% of my day, I spend pretty, it's hard for me to move, and I have to deal with a lot of tremors, and sometimes when I'm off my medication and I need, it's that time for me to take that next dose, I reach for my medication and I showed this video on TikTok of how difficult it is for me to open a pill bottle and then reach in and try to grab a single pill that is four millimeters. And so it's tiny, the thing is like, like this big, right, and trying to reach for a single pill without spilling it all over the place is a challenge, especially when symptoms are really bad.

So that was a frustration that I put out into the world. And in fact when I captioned it I said, "Hey, pharma execs, what the hell? Right, people with Parkinson's, let's make the tiniest pill possible for them."

What was just absolutely crazy about that is that that video went viral. People looked at it and they not only offered their sympathy, but they, everybody offered different ways, and different ideas in the comments trying to say, "Hey, maybe you can try this, or you can try that."

But one individual, Brian Alldridge, it was incredible, he had an idea in his head. First of all, he's not even an engineer. Okay, this is what I mean when I said, you never know who's listening out there and why I want to reach the younger generation. He had an idea in his head on how he can create a pill bottle that isolates a single pill. But he's a music video producer, he's not an engineer.

So he put this idea out into the TikTok world which then intrigued the 3D printing community. The 3D printing community jumped in, saw his idea, they took it, they printed it, this pill bottle which I have right here, right, this pill bottle, and now, what's happening now is that this, this is version five.

So once the idea became a reality, someone printed the bottle itself, they went ahead and made changes to it based on feedback from me, and from other people that have gotten their hands on it, so now we have a working prototype of the version five. It's very simple, right?

Pills don't spill. And then you can just open the pill bottle, nothing spills out. But when I want a pill I just turn the bottom and now I've got one pill, right? So now I've isolated a single pill. And then I don't even have to, instead, I'm just going to make one more turn if I wanted a pill, all right. Oh, it went down the wrong pipe, sorry, but I actually had to take that. But only, so one pill comes out at a time. I don't fumble with it, I don't drop it, there's no issues with it, so just like that, we've got a working prototype.

And out of the goodness of their hearts the 3D community, more specifically, the "Hungry Engineer," is how he's known on TikTok, his name is David Exler, he's actually offered to send these pill bottles to anybody that needs it as long as they can show that they've donated to the Michael J. Fox Foundation. And he's willing to send up to 50 of these free at his cost to anybody, which is amazing.

Lygeia:

That is so awesome, I love that. And it sounds like he wasn't even directly necessarily following you, but it was through this chain of events, like one community to another community, and saw a compelling need. That's very cool.

Jimmy:

Absolutely, it was a chain of events and, you know what, usually things like this, when it comes to ideas and things like that, it takes months and months before you actually have a product in hand, or even years, right? This all happened in a week. When I posted it two days later, Brian had the idea, and the day after that somebody printed the first version, and then by the end of that week I had version one pill bottle in my hand, giving feedback, getting ideas.

Absolutely amazing. I had no idea that this is where it would take us, but we are where we are now, and we're getting closer to actually having a product. It's not just for people with Parkinson's, essential tremors, Multiple Sclerosis, Arthritis, anybody that has any hand dexterity issues is going to benefit from this.

Lygeia:

It's just useful. I'm imagining a scenario, even I'm thinking as a parent, if you have a young child and you're, you know, you're trying to wrestle with something and you're bouncing a baby on one hip and trying not to dump out all the pills or something, that would be incredibly useful.

Jimmy:

Yeah, absolutely.

Lygeia:

And I love, I mean what is so exciting to me about that story, is this idea of crowdsourcing and collaboration, and as you mentioned, the speed of it all. Just the idea that, like, you tapped into, I'm sure many people heard your story and thought, oh, that's interesting maybe, I don't know how to help.

But it managed to sort of land on just the right places so that the right people were able to jump in and give the tools they had to solve a problem, and that's really exciting. That's one of the most exciting things I think about the Internet, really.

Jimmy:

Yeah, it's certainly, I mean, with all the things that's been going on in the last few months, right, that's something that we don't always hear about, but now I mean, positive things are happening, right?

Lygeia:

Yeah, the negatives are you can sort of bring together, you can, again, technology is a tool, it's not inherently good or bad, but it has the ability to connect people who have some kind common goal and help them be more effective at achieving it, and that's exciting, and that's something that I think we should all try and bring into our lives, particularly when it comes to health and wellness.

But our own health is so much in our own hands even in a situation in which you are dealing with a really hard diagnosis, or condition, like Parkinson's, you illustrate that amazingly. I mean, if you hadn't taken the path you were on, as you mentioned, you might be in a wheelchair, your life could be incredibly different.

Jimmy:

Yeah, certainly it would be different, in my mind my life would definitely be very different right now. But yeah, we are our best advocates. People that live with any type of disease, or adversity, you are the expert of that disease, or of that adversity for you, because everybody deals with things differently. So there's no better expert than yourself, so you might as well use that, becoming your own expert, becoming your own advocate to do what's best for you and your situation.

Of all achievements, what are you most proud of? (36:40)

Lygeia:

So, you have many things to be proud of and that you've achieved, and I'm curious, as you kind of think about these incredible achievements that you've had, what are you most proud of?

Jimmy:

You know, I'm most proud of getting the time back with my family. You know, I mentioned I put myself into isolation, and I ignored the disease, and progression, and really put myself into a dark place those first eight years. When I had that fall down the stairs, when I took that look at myself, I didn't like who I saw. I didn't like what I had become.

And to be honest, one of the reasons why I dove into all of these risky clinical trials, and things like that, is because I figured, you know what, if there was a cure out there I might be the first to get it, it was very selfish reasons to start with, right, if there was a cure I might be the first to get it? But if there wasn't, and this treatment was a complete disaster, and I happened to die taking some type of drug, or doing some type of procedure, that wouldn't be the worst thing, right? That was the mindset that I had. It was very, very close to just completely giving up.

But I think the biggest achievement that I'm very, very proud of today is getting that time back, is to be able to reset and reevaluate my own life and how I can live with this disease and still have quality time with my kids. Play, my daughter is, she's also a "Ninja Warrior," she's been on the kids' version of the show, she competes at a very high level. We train together. My son creates animations, and he tells his story of, one of my TikTok videos actually, was actually an animation of him that he created of how he sees me through his eyes, living with Parkinson's. And it was actually a very powerful animation. I hope you, the people watching, and the people listening, would go out and check it out.

So it, and then of course the time with my wife. The two of us combined have raised more than $500,000 for Parkinson's research. And none of that would have been possible if I just phoned it in, right? So that really is, you know, turning my life around, using fitness to help myself living with Parkinson's, giving myself time back with my family, that's my greatest achievement.

What does the future have in store for 2021 and beyond? (39:20)

Lygeia:

That's pretty awesome. And as you head further into 2021, and you think about the future, what are your next, what are you taking baby steps toward, or maybe big leaps toward now? What are you, what are your goals?

Jimmy:

You know, my end goal, you know the ultimate goal, is to stay as viable as I can to my family. And I think moving forward, and let's be honest, training endurance events, training for "Ninja Warrior," these are very heavy, heavy tolls on your body during training. So I've got a long time to live with this disease, and I'm a realist at the same time as being an optimist.

At some point Parkinson's progression will catch up with me, and it will overtake me as I get older, and it's just a fact of life. People get older and people slow down, right, and there's nothing you can do about that. So I want to, I think in the coming years I'm really going to focus on preparing myself, and preserving my body, so that I can continue to fight for as long as I possibly can, and stay as strong as I can for my family. And hopefully the day comes where they have to take care of me, is much further down the road than it is closer.

Lygeia:

Well, thank you so much, Jimmy for your time, for your wisdom, for just sharing your amazing insights with us. I really, really appreciate it and we're certainly going to link to a variety of different resources that you've mentioned, or shared. You know, just a comment for our listeners, AdaRose and our whole community is kind of about health and technology, but technology is really just an enabler, it's just a set of tools that can be used for good, or for bad purposes in many ways.

And when I hear Jimmy talking, I feel like certainly he's used technology in those ways and he's even used exercise in those ways as a tool for something deeper and bigger, and getting to this idea of self-actualization, and in your case, really talking about being there for your family, and for a broader community, is really inspiring.

So, again, thank you so much. And for those of you who are listening, or tuning in, we would love to hear from you. What do you think about Jimmy's story? Are there pieces of this that particularly resonate with you? Are there questions you have, or aspects of his story that you can think about applying to your life in some way?

To hear more stories about technology, and health, and wellness, please subscribe to our YouTube channel and follow AdaRose on Instagram, Twitter, and TikTok. Also, if you go to adarose.com we're gonna link to a variety of the resources that Jimmy mentioned today. Again, thank you for joining us, and we look forward to tuning in next time.

Jimmy:

Thank you for having me, it was a pleasure, it was a lot of fun, thank you very much.

Resources:

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