Beating Parkinson’s to the Punch with Laila Ali

We get about sixty new diagnoses every year. And we've gathered this conversation with a full range of people who are knowledgeable of, impacted by, and working toward the eradication of this disease. We have in the room with me right here, Leila Ali a former World Championship professional boxer

twenty four and OH record twenty one knockout. She's an author, she is a television host, she is a health and wellness expert with her own product line, and she is of course the young his daughter of Muhammad Adli, who lived for over thirty years with the disease. He felt like it made him even stronger to show people like I have this disease, but I'm still gonna come out. I'm not gonna hide. Nothing's gonna stop me. We have

Debbie Brooks with us. She is the co founder and executive vice chairman of the Michael J. Fox Foundation, working to deployed capital and innovative ways to move the needle on this disease. I've come to appreciate the Parkinson's patients. When this disease lands in their lap, They're likely going to have a lot of good years in front of them, but there are so many things they can start to do right away that can set that the vector in

the best posture. We have. Dr Andy Singleton, a neuro geneticist senior investigator at the National Institute for Aging, which is part of the National Institutes for Health in i AGE. Just from talking with patients, you see so much benefit from the things that they pursue around exercise and dance and yoga and doing the cross world and maintaining an active lifestyle. And later on in the conversation, I'll be

talking to someone currently living with the disease. Jimmy Choi three time American Ninja Warrior, an athlete, a motivational speaker, and a Parkinson's advocate. I was told that I would be in a wheelchair when I'm in my forties. I'm far from being in a wheelchair. So I'd like to start with Andy and Debbie especially to just kind of lay the foundation down of what is Parkinson's and share more numbers of who's affected, but also how how many are at risk and why this is such a threat

that needs serious proactive management. Can one of you take us into the basics of Parkinson's. We believe there are around a million people affected with Parkinson's disease in North America, and estimates suggest around six million people affected worldwide, although that's probably a really gross underestimate. It's it's far more

people than that. I think what's particularly concerning is, of course, our population is graying right where living longer, and the proportion of people who are over fifty, over sixty, over seven is increasing, so the number of people affected by age related disorders will also increase, and of course Parkinson's diseases an age related disorder. The biggest risk factor is his age. Can you define what Parkinson's is? Many of us have an image of tremors. We've known some world

famous and celebrity figures who've suffered from it. Can you just lay down an elementary introduction to how the disease even works and what its symptoms are, so we don't really know how the disease works. When you think of the disease, you think of what a patient looks like, and I think one of the first things that you notice is that the patient looks stiff, they're slow in movement, they often have tremor, so these movement disorders the first

thing you notice. But when you talk to anyone with Parkinson's disease, you realize there's so much more to it than just the movement sort of. There's lots of other things that affect p D patients. Depression, some issues with memory and thinking, other kind of autonomic and disautonomic features that affect all sorts of activities of daily living and quality of life. The diseases and age associated disease. So

the older you are, there your risk. And with a typical onset in the fifties or sixties something like that, it's a slowly progressing disease typically, so patients will begin with some kind of feature like a tremor or something that can seem quite benign at first, but it's an insidious disease and that it will just continue to progress. There are some treatments that help to deal with the symptoms. So they helped to mask or affect some of the

symptoms that you most commonly see in Parkinson's disease. But there's no disease modifying treatments that the disease will march on. There's no treatment yet to halt or slow the disease. And Debbie, what is the Fox Foundations perspective on Parkinson's and where the disease is today and where the battle

against it stands well. I think one of the things that Andy mentioned, which is we don't have treatments that really address the underlying disease course that remains the greatest unmet need for patients, and so our organization is really focused on how can we, in partnership with patients work together to accelerate progress. And even though the disease is slow moving over time, patients are really struggling with more and more unmanaged elements of the disease and it becomes overwhelming.

If you know one person with Parkinson's disease, you know one person with Parkinson's disease. It's really highly variable from person to person, and so how do you bring together a package of needs for one patient versus the next and put an organizing principle around these things so that

you can advance progress. I want to talk a bit about what that experience is, and Leila would turn to you, because Debbi mentioned is a slow moving disease and it progresses over time, and your father lived this disease for just over thirty years. What do you remember of the moment from your life where you were aware that something's happening with your father. It's all a bit of a blur in terms of when I first knew that he

had the disease. I remember probably being about seven years old when I noticed a change in him with the tremors and a little bit of a slurred speech. And you hear kids in school saying, oh, your father has brain damage and things like that, but I didn't really understand whether he did, he didn't. He had a disease. You know, as a kid that young, you don't really

understand even what a disease is. But I do remember getting older, maybe when I was twelve thirteen, when I really started to understand that he had a progressive disease Parkinson's, and that he started changing more and more over the years. I just remembered him always never wanting us to feel sorry for him and explaining to us like he would just say, oh, it's just my hand, it's just shaking,

but I'm fine. You know, everything else is fine. And in terms of how your family operated and his role in the family, over time, as the disease made progress in his body, did that further effect, like how did it show up in the family. Well, my parents divorced when I was young, so I didn't actually live with my father, but I would see him probably every three months, so you notice changes even more when you're not there every day. I would see him and say, okay, seems

a little worse as the years went by. And for your own children, did they get a chance to interact with him, did they have any observations they did? My daughter Sydney had a really special connection with my father. Sydney is eight years old, and ever since she was a baby, she used to go to him and he would hold her. And a lot of times children were scared of my father because his energy was just so strong,

and then his hands were trembling tremors. He has big hands, the big man, and she just was glued to him at all and she would like touch his face and he noticed too, like wow, she's not afraid of me. But she would kiss him and hug him. So they really had this spiritual connect. And I remember one day we came to his house and he was having acupuncture and we were like, wait, wait, don't go in there right now. He's got all these needles, like that's gonna

be scared. But she ran in there and didn't care. She hopped right on in the bed with him. And I was like, okay, this one special that was It was great to see. Can you describe how you fit into the family? And so the trade you from him. So I'm the youngest girl in the family and I'm the only one that decided to become a boxer. Now, my family was not surprised when I announced to them that I was gonna go pro. My father didn't like it.

We tried to talk me out of it because it wasn't antil I was about seventeen that I saw women's boxing for the first time. I was like, had this plan and I saw women's boxing, and I was like, how did I not know women boxed? And that's when I first realized that it was in me. I hadn't even participated in sports up until that point, and I

remember thinking like, oh, was everyone going to think? And a year later, I was training kind of in secrecy after school after work, and I told my dad and he was just like trying to talk me out, and he's like, what's gonna happen if you get in the ring and knocked down or you get knocked out or I was like, well, I'm gonna do what you did. I'm gonna get back up. And then if he finally got frustrated and said what was really on his mind? He says, not for women, it's not for you. It's

too hard. And I said, you know, I understand that, Dad, but this is what I've decided to do. So he supported me throughout my career. But I knew he was afraid because he always said that Parkinson's he didn't feel came from boxing. But I think that he still was afraid of just me getting hurt in general, or who knows what was really in the back of his mind, and that persistence it seems evident in how he continued to live with Parkinson's in terms of continuing to travel

doing his humanitarian work. From your experience and exposure to him. Was that a conscious choice to get back up off the floor and kind of keep pushing. Absolutely everything he did was conscious and intentional and had purpose. So he was adamant about the fact that boxing was just his platform to do what he was really put on this plan to do his humanitarian work, and he felt like it made him even stronger to show people like, I have this disease, but I'm still gonna come out. I'm

not gonna hide. Nothing's gonna stop me. This is obviously a part the plan. He never sat around and felt pity for himself. He didn't want other people too, because, trust me, it was hard. It was hard traveling that way, having hundreds of people crowding around you all the time signing an autograph. How much more energy that took him to do and look everyone in the eye and make them feel special, picking up babies, doing all of that

all while having this disease. And I know it was tiring, but it just showed me the will of a man to get through all of that and to continue traveling and doing his humanitarian work. He literally signed his own fan mail, but he would get thousands of pieces of males and he would love to stead at this big large table in his office and sign each piece of mail, just watching that how much he loved people, he loved to give back, and he's just like, Wow, Yeah, I

was so proud of him in so many ways. I want to bring Indian Debbie back in What do we know about the origins of this disease, about his genetic origins, about its environmental or at least what hence do we have. We know so much more than we did really. When genetic investigation started in this disease, which was back in before, we thought there was no genetic component to the disease whatsoever, or if there was, it was incredibly rare. That's changed

completely over the last twenty years. First of all, with the discovery of of mutations that cause disease. You know, if you carry them, you're going to get disease. Those are generally pretty rare. But with the understanding in the last ten years or so that there are myriad genetic factors, common factors that we all carry that change your risk

for disease. So we know Parkinson's is a genetic disease, but we also know it's an environmental disease because genetics isn't deterministic genetics doesn't drive all of your risk for a disease, and what else is there apart from chance

and the environment. So we really think of it as a typical complex disease where your risk is brought about by a combination of genetics and how you live your life, and what other questions are we asking to try to narrow that set of genes we're looking at, or that set of environmental factors that may trigger those genes to flip the switch onto the disease. As it turns out, I think genetics is a lot easier to investigate than the environment. I think our genomes huge, three billion base pairs,

but it's finite, it's three billion. Whereas your environment. You think about all of the things that happened to you during your life and how much of them happen, and that's so much more complex and so much harder to measure actually than genetics. So I think that a lot of us are trying to take hints from genetics, from the biological processes that we see affected by genes that confer risk for disease, and ask the question do those

tell us anything about environment? And of course there are lots of things that have been associated with environment and risk for disease over the years, narrowing down that complexity, trying to bring some order to it. I think, Debbie, that's what the Michael J. Fox Foundation has been trying to accelerate in terms of how you're using your money

and how you're operating in the philanthropic space. Can you talk about first how you came to this world and then and give us an introduction to what the Foundation's approaches and how it's different. Sure, of course we're started by a patient also, Michael Fox, who himself has now been living with the disease for twenty nine years, and when he was public and was called into action and just was motivated by the way one of the first people he spoke with was Mohammed and so they weren'tindered

spirits around this. And but Michael's sense was as a patient, what could he do and what could more people do to galvanize an effort to elevate Parkinson's as a field of study and to just bring greater awareness. And so we didn't really have much more of a roadmap than that, what's the greatest on met need and what can we do to move the dial in that regard, and so what we started out with was, well, let's try to raise some money, and then we got to figure out

the smartest way to spend end it. And my background was more from business and finance, and that was a good fit for me. I was practiced at thinking about how to use capital, how much risk to take, and so we really set out at the beginning saying, no matter how much money, how are we going to decide the smartest way to spend it. The philanthropy in disease space is minuscule in some ways in comparison to what

the government spends and what pharmaceutical companies spend. If you're going to have a smaller relative amount, you have to really think about what's the most exponentially impactful way to spend it. As we've raised more and more money, we've put it to work aggressively, mostly trying to do the things that other money won't do. And that's often trying to see all these things are being tried, but what

makes us keep coming up short? And some of the things are to take ideas that are kind of an early stages and help move them over the kind of complications of getting out of this is interesting science to what kind of science and what's the last bits of data we need to know that this actually can be turned into a treatment. That's an uncommon place for capital to be available when it comes to taking aha moments in a lab all the way to the drug store shelf.

And so we did pick that sweet spot. How do you pick up things when they're ripe and make sure there's enough additional data around them so a pharmaceutical commony you will pick it up. And then the second thing is we'd like to really understand how people get this disease and what the disease really is. And even though it's been described for over two hundred years, we really just describe the symptoms. We don't really know enough about

what's going on underneath. One of our beliefs has been let's do what we can't actually study it in the patients themselves. It's not that nobody thinks to do that,

it's just it's very expensive and it's hard. We've built as a platform to engage with hundreds of thousands of patients to really bring them into the research process as participants in research by providing information, including in some cases their genetic samples, but also to be part of the living body of knowledge around what does this disease look like? And that's particularly important when you have a highly variable disease like Parkinson's. You need a lot of people, need

scale to really gather the insights you're hoping for. You know, there's a principle that's underneath that approach that I've heard in other circles and more activist circles that says people closest to the problem should be closest to the solution. So congratulations on making the simple scalable in that sense, she'd work in advocacy for health and wellness in general. Where does that come from for you and what exactly

are you doing well? When I decided to become a boxer, I went on this journey and I was like, Okay, it's about what I put in my body hot I think the rest that I get everything my mental state. That's what inspired me because I saw the change I transformed my body in my mind. I became an elite athlete just by making my mind up to do so

and being consistent. Then when I had children, I started just doing more research on organic food and na GMOs and just really immersed myself in that world then a course, knowing that we have all these epidemics that are heart disease and diabetes and all these things that come from lifestyle choices a lot of the time, so people really need information, and they're just overwhelmed by supposed to eat this or don't eat that, or this is healthy soil

that's not. In Every season there's a new trending diet or workout, and you gotta filter through it. But I try to encourage people to keep it simple. Nobody ever argues that you shouldn't need more vegetables, you shouldn't need clean you know, I don't care if you're vegan or if you're doing keto or paleo, whatever it is, because our bodies are always constantly working on our behalf to

try to keep up with everything that we're doing. I just encourage people to go on a journey with me, and I know that a lot of people just aren't educated about what they should and shouldn't beating. I fear in life is to feel like I didn't do the best that I could to take care of myself, because we only have one life to live one body. Of course, I'm not in control of outcome of everything, but I am in control of I put in my body and

what I choose to have in my environment. The role of well being healthy exercise has come up in some of the research. I'm talking with Jimmy Choy later about that, doctor Andy or debbut or both. What do we know about this, the role of exercise and overall healthy lifestyle choices that technically help slow the disease or at least help people live with it with a bit more comfort

and confidence. I think you hit on it there at the end, which is I think that it helps people live with it in a more functional way, helps them be more comfortable with the disease. I think that exercising your body, exercising your mind, they have to be good things. They have to help you deal with the problems that you're facing with a complex disease like this. I think the amount of research that's in this area is small, It's not as large as we like it to be.

But just from talking with patients, you see so much benefit from the things that they pursue around exercise and dance and yoga and doing the cross word and maintaining an active lifestyle. There is a component to Paarlkinson's disease that affects the way that a patient thinks and processes information. And I think if you practice the skill of thinking and processing information, you're protecting yourself to a certain degree.

I've come to appreciate the Parkinson's patients when this disease lands in their lap, They're likely going to have a lot of good years in front of them, but there are so many things they can start to do right away that can set that the vector in the best posture, and so things like healthy lifestyle choices, and they're not super specific, as Laylis speaking, it's simple things. A good heart healthy diet is a good brain healthy diet. Maintaining

a social network is also helpful for mental acuity. There these things really come together, and I've been appreciating more and more that any disease of aging, it's almost the time of life where you need to be the healthiest. We think of that as oh, in our thirties or in our forties, we really want to be healthy, but actually have come to appreciate it when you turn sixty, and that's when you really need to get serious about

a really holistic sense of what healthiness is. And it's sleep, exercise, functional diets, social worlds, even frame of mind, optimism. These things they can make a big difference, Leila. I'm thinking about your father's experience from what I could see from a very distant outside, and he seemed to have some of those elements, the optimism, big family, and a lot of people around the world who loved him, and he's

staying engage in the world. Could you, from your closer perspective see the effects of that on how he approached this disease. Definitely, my father, it really helped all the love that he had around him. Obviously, just everywhere he went he got a standing ovation. People would come to tears and he loved it. Trust me. We'll be driving down the street and he's like watch this. Watch this. They roll down the window and just wait for the person next to them to notice, Oh my god, it's

Muhammad Ali. But then just all the love of all of his children and talking to him, interacting with him. But I mean, you know, we still do puzzles with him. He's to draw, he'd liked to look through mad magazines, you know, and just really keep his brain going. And we're human beings were meant to be touched and loved

and have those relationships and things like that. So it definitely as a holistic point of view, what is the role of genetics, And that is probably back to Andy as the neuro geneticists around the table here, but people's understanding of their own genetics. Where the science is in getting a little closer to understanding how this disease operates. Where do we stand with that? Yeah, the science is incredible.

The pace of discovery is really amazing. I mentioned that we had no genes or no mutations that cause disease back in ninety six. The first was discovered in ninety seven, then there was slow winds over the next few years. The most recent analysis of Parkinson's patients included somewhere in the region of about sixty thou patients and one and a half million people without disease. So the genetics of those folks and that's led us to ninety risk factors

for ease genetic risk factors for disease. We've gone from zero to somewhere in the region of a hundred over the space of twenty years, and that pace of discovery is just getting faster and faster and faster. There are a couple of reasons. Of course, why do we look for genes that cause or contribute towards disease? First is prediction. Can you look at someone's genetics and make a prediction

for their risk for a disease. The second and kind of more traditional approach has been, if you understand genetics, you know what flavor of a gene or what type of a gene is involved in the disease process, so you can begin to put together networks of those genes and pathways and biological processes that actually are the disease itself, the processes of the disease itself. So if you understand those processes, you're not kind of fumbling around in the

dark anymore for a treatment. You're aiming a treatment at those processes. You're trying to stop the underlying disease at the molecular level. It's like turning the lights on in a dark Roman seeing was really there. Yeah, Actually, that's a great analogy. I always think of it as imagine you've got this incredibly massive building with thousands and thousands of windows, and you have to understand what goes on in that building, and each gene is kind of a

window into that building. It gives you an idea of what the processes are that's going on in there, and hopefully if we understand those processes, we can stop the disease. Do you all think that understanding what goes on behind those windows is going to be increasingly the responsibility not of advanced research scientists and disease warriors and fighters, but

everyday people who want to live a healthy life. There are more and more of us now who have our own genetic information and can put that to use and understanding disease and understanding not just Parkinson's disease, but every disease. Debbie, can you describe what people listening can do to help what the foundation is doing? Yeah, particularly for Parkinson's patients and their family members. If they're not already involved this

and thinking about it, I hope they'll consider it. One of the ways it's kind of relevant to our discussion today is a platform called fox Insight, and fox Insight is a place where any Parkinson's patient and actually non Parkinson's patients can go online and you tell us if you're a Parkinson's patient, you tell us if you're not, and you get a series of surveys once a quarter, so four times a year. You take about a half hour forty five minutes to answer a series of questions.

We already have about forty people who are in this platform, but we need a hundred thousand. I really try to encourage people to think about doing it, and I do it myself. This data is available to researchers in real time, and it's helping us part all sorts of elements understanding what patients experience, how it's changing over time, which mix

of symptoms they happen to have. We actually have a partnership with twenty three me where we pay for Parkinson's patients who were enrolled in this study to actually spit into a test tube and add their genetic information to the information that they share through the surveys, which was really their lived experience of the disease, everything from what symptoms bug them to what medications they're on if they have a family history, and then we laid that DNA

next to it. This is an incredibly powerful combination and enables us, particularly if we have more and more people doing it, to dig in and get more insights than we have today. I'm sitting here now with Jimmy Choy, American Ninja warrior, athlete, motivational speaker, Parkinson's advocate, and just amazing positive back can already tell from interaction with you, Thank you that you're infectious in a good way. I want to hear in your words your origin story of

Parkinson's in your life. Well, I was diagnosed at a very young age. I was only seven years old. And this was back in two thousand and three. My wife and I had just gotten married and we were starting our lives together. You know, we had a mortgage, right, you were grown up, we were finally adults. Um. Back then, I knew nothing about Parkinson's. I was active and played a lot of golf. Um, so I'm gonna be stiff.

Especially I refused to ride in a cart. I always walked, and I would carry forty pounds of clubs in my back. So being a little stiff after walking eighteen holes is normal. I worked in I T industry. This is back in the early nineties and the dot com boom, so being stressed at work is very common. Minor twitches here and there can explain away these things that I'm feeling. I was losing my balance, and you know, I just always thought maybe I was just not paying attention being a klutz.

So everyday life can be used to explain away the things that I was feeling. How did you decide that this could no longer be explained away? Actually I didn't, someone else did. I bought life insurance, and of course what comes with the life insurance is an insurance physical, right, the insurance physics of the nurse that came and did the physical actually noticed some things about me, and all started with the dilation of my pupils being really slow.

And then she explained to me that, hey, you know, I do insurance physicals on the side, and I actually just work in a neurologist office. She never said the word Parkinson's. She never said anything else except that I should have a discussion with my doctor about the things that we're about to talk about, which is all related around the way that I was moving and things that she was noticing. I wasn't swinging my arms when I

walked across the room and back. My pupils are stallating really slow, and I would have stiffness and mine twitches here and there, one referral after another, a easy four to six months later and the whole diagnosis process. I was finally told that I have Parkinson's. What did they discover in your body that confirmed that it's Parkinson's. Gonna know, there's no blood test for it. There's absolutely no blood

tests for Parkinson's. There is no single thing that you can do to tell you that you have or don't have Parkinson's. The most reliable thing back then was what they called a D A T scan, and it's a brain scan that essentially looks for changes in the area of the brain where dopamine is being produced. And even that is unreliable, they say that would be an indicator. And then after we look at the scans, then they said,

all right, it looks like you might have something. So here's some drugs to take, and these are Parkinson's medications, which is leveodpa carbon dopa. If my body reacts positively to these drugs, then that's how I was diagnosed. And that's exactly what happened. So you find out four to six months later that you have this disease and you don't do anything about No. Absolutely, I couldn't get my head around it. I always thought that Parkinson's was for

older people. I never knew that someone who was in their twenties can possibly have it. I was convinced myself that my doctors are wrong. After three opinions, all three neurologists were wrong. I could myself. I convinced myself that I would just push through it and it would go away, just like everything else. You thought you could shake it up. I thought I can just shake it off and walk off, and walk it off exactly. Wrote some dirt on it, and we're good to go. For the next eight years,

I didn't go back regularly. I only went back when I needed refills, and I took the same dose of medication, no changes. Didn't even open a pamphlet that they gave me. When I was diagnosed. I went into full denial mode. How is your wife responding in this period where you both know you have this but you're doing the bare minimum to manage it. She didn't even know it first. I didn't tell her for a couple more months after I was diagnosed. Only when I decided that I would

have to take medication regularly did I tell her. How did that go? I think it was shock and it was more disbelief on her part. She's like, what you're kidding. That can't be right. And then I think she took the same approach that I took because she's getting her shoes from me, and if I'm not displaying any signs that I need help, then she didn't think she needed to help at the time. Eight years later, my disease has progressed to the point where I was walking with

a kne because I kept falling over. I became very interactive. I weighed actually two pounds two hundred and fifty pounds at one point, like a fifty increase in my weight. It has gotten so hard to move to this point that I just stopped moving. I would put on weight. Without the cane, I could fall. So that's how I lived my daily life. One day, coming down the stairs at home, I was carrying my then infant son, he

was ten months old. I went and started proceeded downstairs, and I, of course, I fell and I tumbled down the stairs with my son. So you're desperately trying to save his life, protect him, even though the act of carrying him down the steps was putting him in danger. Absolutely. I had quite a few thoughts immediately after the fall. Number one was is he okay. Number two. I looked over my wife and my daughter both witnessed this, and the looks on their faces was probably the most disheartening

thing that I can see. At that time, my son was okay, thankfully, but at the same time, I now realized that I've become a safety issue for my kids. In my mind, I've become a burden to my family because now not only does my wife have to worry about the kids, she has to worry about me. So would you do? I thought about throwing the towel. To be honest, I'm not gonna lie. It was the dark

time in our lives. Frustration, anger, depression, all that stuff, simply because I couldn't move, I couldn't play with my kids. I couldn't live quote unquote normal active lifestyle. But then, after I thought about it for a little bit, I started doing research and for the first time I started to look and opened that pamphlet that I was given that I never opened. Well, I finally opened it, and then my wife and I started talking about the things

that we need to learn about Parkinson's. We studied it together and we learned. I noticed that there's no cure out there. Obviously, but I also noticed that there's a lot of clinical trials available and they were all starving for participants. Nobody is signing up for these things. So that's what I told my wife. I told her, Hey, you know, we both know I'm not smart enough to find the cure, right, she should not her head immediately. Um, we obviously can't fund the cure because it takes a

lot of money. So that's what I was gonna do. I was going to give up my body for science. I was going to sign up for as many of these clinical trials as I possibly can and take part in them, somewhere as simple as answering questions. Some involved experiment therapies. So I did them all. Whoever we accept me, I did it. So you go from hyper passive to

hyperactive and hyperactive in my education. One thing that I've noticed doing these clinical trials is that everywhere I look, exercises mentioned all the time, and it's just it was mind blowing to me because I have a movement disorder, right and they want me to move That was crazy, right, But then it turns out that we now know today that high intensity exercise is the only treatment proven too slow progression of Parkinson's tell me what that feels like

in your body. I always say that it's that moment of how do you describe it? That that moment, right, I had to build my way up. Right. I started walking, and then I started jogging and I started running. But I was doing that long enough to develop what they call the runners high, and that's essentially release of endorphins in your brains. That makes you feel happier than you really are. Right, Because let's be honest, running sucks, thank you.

You know, I'm not saying runnings for everybody, but you know I was doing it because it was making me feel better, and it had to do with the runners high. But more I exercised, the better I felt. It just made me want to do more. It really did become my drug in more ways than one. It was a therapy drug. And it's also almost like narcotics because I wanted to do more and I couldn't get enough of it, so I just kept pushing. I've read your stats. I feel like I'm looking at a sports program in an

old players card. He's got one ultra marathon, fifteen marathons, one hundred half marathons. American Ninja Warrior two seasons, three seasons. That up. Well. I always joke that on a playground, nobody would ever pick me. But I think that's the mindset that I have today that allows me to do

a lot of these things. I mean, when I started running, I'd never run anything more than a mile, But my first five k came in two thousand and twelve, and ever since two thousand and twelve, I ran all those races you mentioned, and then some because there's also triathlons in there. There's also century bike rides in there. In fact, I was the first person on record with Parkinson's to complete a hundred mile bike ride in under five hours, and that's holding twenty miles per hour for five hours.

And I was able to do these things because I kept pushing myself. I kept putting one ft in front of the other. And my model was what can I do today that's better than yesterday? Because I'm gonna have good days and I'm gonna have bad days, And on those bad days, I'll be honest with I don't even want to get out of bed. I just want to lay down and I just want to sleep, or I just want to rest. But even on those days, I

have to make myself get up. I know on those days I'm not going to get more than yesterday, but at least I'm up and moving, and then when I come back the next day, if I feel better, then I go after it. Can you talk a bit about what it's taken to emotionally retrain yourself and mentally retrain yourself. One of the things that I learned is that this

is not a hobby. So the mental preparedness that I have to tell myself to get after it every day, to do my regiment, whatever it is, exercise, stretching, keeping track of my medication so I can keep a log from my doctor so we can both work better together to develop the right dosage and the right treatment plan for me. Because the only person that has this data is me, and my doctors are smart enough to help me.

But I have to provide that data. So you have to be disciplined to exercise, to take your meds, to keep track of what everything is, and then provide that data so that you can help yourself. So it is a lifestyle change. Does that level of commitment take any other tolls with your partnership with your wife? I mean this is a new level of dedication in your life to your own well being. But it takes a lot

of energy. It does take a lot of energy. And I'll tell you what that first eight years when I was isolated, I was angry, constantly yelling at my family, arguing my wife, that's not healthy. But after I started working out and I started finding my active side, my family became my cheerleaders every event, every race. My wife is at the finish line. My kids, they were younger. You can't expect them to sit there for four hours away for me to finish marathon, but they're always there

for me. When I told my wife I needed to go and train on a Saturday morning, she was more than happy to do it, and she supported me because she can see the difference in the way that I was moving, and she can see the difference in the way that I was emotionally much happier. So for her, I like to say that it made the things that I'm doing also made it easier for her as well. One of those people ask me, where do you find time to do all this exercise? Yeah, don't you have

to work? You have kids to take care of. Well. One of the symptoms of people with Parkinson's is in Samnia. So when I can't sleep, I often just get up and go run midnight for ten miles, or I'll go out and go to the gym. What does it meant to you to be so public with your disease, with how you're managing it, and to, more formally, in terms of Team Fox and the Michael J. Fox Foundation, become this ambassador on behalf of other patients and families. I'll

be very honest. In the beginning, it was all about self preservation. It was about me, Jimmy, Jimmy, Jimmy. I was unning and exercising, and I was feeling a lot better for myself, and I was doing these things to make myself feel better. But it wasn't until I decided to run the Chicago Marathon in two thousand and twelve. I was late to the party interns of register. I wanted to register a month before the actual event itself, but it was sold out and the only way in

was through charity. And of course, if I'm going to run for charity, I'm going to find a charity that supports Parkinson's research or Parkinson's programs. I've known about Michael J. Fox Foundation, but I didn't know about Team Fox and that was really where I found Team Fox for the first time. I need defined Team Fox for Team Fox is the grassroots fundraising arm at the Michael J. Fox Foundation. They empower volunteers to create their own events and raise money.

And the beauty of it is, since I got involved, of every dollar raised for Team Fox goes directly to research, so that's why it is so important. So I decided that I was going to accept this BIB and it was two thousand dollars as a fundraising commitment, and I had never fundraised that much before. I need to start telling people why I'm doing this. You go to your friends when you need to fundraise, right, you go to your family. So then they're like, well, let's call it fundraising,

not borrowing money for a cast. So in that one month's time, I've raised over five thousand dollars for the Michael J. Fox Foundation, and I've reached out to other people with Parkinson's trying to do the same thing, whether or not they're fundraising for other efforts. Because now I'm part of Team Fox. And that's how I got involved with the Michael J. Fox Foundation and Team Foxon, and I met a lot of people through that process that they've become my family now, and now I want to

protect my family. I want to keep doing the things that I'm doing because the more money I raised, the better it is for the cause. It's inching us towards that goal, which is to find that cure. There's many people out there with Parkinson's that aren't able to do the things that I'm able to do. So sometimes I look at it where I have to pick up some slack for some others. I have to run and move for those we can't, so that hopefully one day they can.

And what started out as a selfish endeavor has now become there's a purpose in all this. And then the more that I did along the way, eventually somebody stuck a camera in front of me. Oh boy. And when I competed on my first season in American Ninja Word by the Way, my daughter dared me to try out. That's how that happened, and I couldn't say no to her anymore. For years I've told her, oh, you know, I don't have the strength and I have Parkinson's. Come on,

this is the best excuse in the world. To not go on American in War. So I did it for her, and then because of my work and connection with the Michael J. Fox Foundation, it was easy to be public to share that my story with the nation and with the world. Really, how much money do you think you've raised through Team Fox activities over these years. So we

mentioned all those athletic accolades. Those are all great, But what I'm truly most proud of is the fact that my wife and I have helped raise for more than four hundred now US for the Michael J. Fox Foundation. Every penny of that went directly to research. I can't be more grateful than that. What's next for you? So I'm always looking for the next physical challenge, whatever it might be. But yet at the same time, nowadays I have to be mindful about my future with my family.

I've always wanted to do a twenty four hour bike ride, which means I would ride from one city to another roughly miles in twenty four hours. I've always wanted to do that, and I think I'm going to put that one back on my radar. There's a lot of endurance things that I want to go back and doing because high intensity exercise I need to keep doing it, but I need to do it with as little impact on my body as possible. Cycling is one of those ways to do in it. So who knows we're going to

bring that back? Have you felt that you are pushing back the disease or that you're managing its encroachment on you better because of the regiment of the past several years, the stronger I got, the symptoms never went away, right, But I'm preparing my body to better handle it. That's how it best describe it. But am I confident enough to say that I believe that I've slow the progression absolutely? Because remember I was walking with a Kane That's right.

Right now, I can run for hours, I can swing on things and fly from bar to bar, or whatever it is that you want me to do, I'll try it. I was told that I would be in a wheelchair when I'm in my forties. I'm far from being in a wheelchair. Taking things to the next level. It will always be what I'm going to try to do. The idea is that I would keep pushing right, and I would encourage others to do the same thing. So what has Parkinson's taught you? It taught me that parkinson sucks.

All right, let me be clear, because I'm very positive in the way that I talked about how I live with it. A lot of times people can have the wrong sense that is he happy that he has parkins is. No, it sucks. I wouldn't wish it on anybody else, Absolutely not. But at the same time, Parkinson's has brought me some things in return that I would otherwise never have if I was never diagnosed with Parkinson's. Friends, for one, people that have met other people fighting the disease to have

positive mindset. They provide me with inspiration. They provide me with friendship and guidance to how to live better with the disease. The physical activity. I'm in the best shape of my life. If I was never diagnosed with Parkinson's, who knows what shape I would be in right now? Who knows what I would be doing. People ask me all the time, Jimmy, can you imagine how much stronger you would be, how much master you would be? With our Parkinson's? I said, I would never be doing these

things if I wasn't diagnosed with Parkinson's. So thinking back on it, it still sucks. But at the same time. I think there are ways that people living with Parkinson's can still live well. But it's all about perspective, and it's all about how you look at the things that

you're doing every day while living with the disease. Man, thank you for sharing your story with me, with all of us, this hyper passive to hyperactive in so many ways to shift in perspective, these new choices that you've made within the context of a disease that often doesn't leave people feeling like they have very many choices at all. How can people follow your work? Find you get engaged on the internet platforms of the day. Well, I'm on Instagram j C fox Ninja, same thing on Facebook at

j C fox Ninja. I could be found on my own website, the fox Ninja dot com as t H e o x ninja dot com. And I helped your listeners and come out and follow me. Wow. Jimmy's firsthand experience with Parkinson's is certainly inspiring an eye opening. It also brings to mind the importance of hearing from patients directly. On that note, I'm curious as to what you all have found to be some of the misperceptions out there

to people getting wrong. What are some of the points of ignorance around this disease that we can help clear up. But I think to be touched on this earlier actually, which is that it's one disease. Really, I think that we're really beginning to understand that one person's Parkinson's disease isn't another person's Parkinson's disease. And there's this whole array of signs and symptoms and progression, and they vary incredibly

from person to person. All of the work that is done now is aimed at trying to understand what drives those differences. Way is one person's parkinson is different to the others. One of the things I think about, which follows on Andy's point, is that there's not a single solution. It's human nature. You're diagnosed with the disease, and your first notion is what can you give me? How are we going to treat this? And you realize quickly in

Parkinson's there's kind of good news bad news. One, we actually have some pretty good drugs that help manage the symptoms, and so for the patient, once they start taking those medications, they actually feel better and they feel there's some control with their not really prepared for is the fact that over time the disease overwhelms the value of the medications

we have today. What I see as a misperception is that just because we don't have the right answer for you right now doesn't mean it's never going to be there. And these things don't fall from trees, and so one of the things we think about is that how can patients be the solution they're looking for? And it circles back around to some of our central tenets of getting

patients involved in research. Sometimes those are trials where we're testing new treatments out drug trials, real interventions, and sometimes it's just participating in research in a way where you help advance the learning and the understanding and the variability and help answer questions like the one Andy put forth, which is is this one disease? This notion that it's kind of a monolithic thing, I think is probably a

pretty major misconception. I'd also say that we're making lots of progress, and because progress doesn't happen in a day, it doesn't show up a new cycle in the way other things that we can break through on do. And because these are really long cycles, by the way, they're getting faster. The velocity of progress right now is so inspiring and very exciting, and it shows all over the work we see in the field. But there is a

lot of excitement and things are going to change. We tend to overestimate how fast they can change in the short run, but we're underestimating how much is really changing in the matter of three to five years. And in a disease like Parkinson's where you can live decades with it, that needs a lot of progress in your potential lifetime. I think there's a lot to be excited about. And do you have a website for us or any kind of call to action or engage for our list. There's

a support and of the work you're doing. Actually, I think a great resources to funnel through the Michael J. Fox Foundation. One of the things that has changed over the last ten fifteen years is that I think the Paulkinson's research community is now a real community. We're not working individually and lapsed by ourselves. We work as a community, and I think a large part of the reason for that is the Fox Foundations go through them, They'll funnel

it to the right folks. Laila, I'm coming back to you, what is your call to action to people in terms of engaging in their own health and where would you send them, where would you ask them to get involved? Well, first, I want individuals to recognize that they can take their health into their own hands. You can be in control of your health. Don't think that, oh, I just get older and I'm going to get sick. I know people who are sixties seventy and in better shape than I'm

in physically. They're still running marathons and they look great. Their skin is glowing, and they're mentally sharp, and they're living life with vitality. Who were living in a time where people are tired, they can't sleep, life feels so rough, they don't have vitality. They're just trying to make it. And I just want people to remember what life is really all about. For me, it's really about replenishing your health, replenishing your mindset, and then replenishing your purpose in that order.

If you don't have your health, you don't have anything finding your passion because to me, that's what's gonna keep you going is having that passion. So through the Laylaally lifestyle brand, I have a website lailally dot com I have content, their tips and tools where I'm really using my story, my way of thinking, just to inspire others. And I'm really trying to reach that audience that just

needs inspiration to get going. Just get going, get on the journey, take that first step, and that's really all that you have to do. And then there's just so much information out there, and you're gonna slip sometimes even I do. I mean, trust me, I love a glazed donut, you know what I'm saying. I love some peach cobbla a la mode. You know. That's why I did my cookbook Food for Life, because I'm like, I want comfort food, but I want it prepared in a healthy, nutritious way. Now.

I don't have a lot of time. I have two young children. I have eleven year old eight year old husband. He's like my third child. I'm just joking. I'm just joking. I can make excuses all day long sometimes and go weeks and I'm just too tired to work out. But then when I get my mindset and I go, you know what, even if it's twenty minutes or fifteen minutes, just to get something in because it makes me feel good. It gets those good endorphins going, and it just makes

a difference in my day. I want to feel proud of myself. I don't want to feel like, oh I didn't do it again. Don't have of this two items on your to do list, start with one to three things that you can actually get done. It's really just simple steps like that. I think this goal of living with vitality captures a lot of what we've heard in

this episode. Jimmy Choy talks about it slightly different words, same spirit, and the way the Michael J. Fox Foundation is approaching this, the way Andy's work living with this disease with more vitality and preparing to live with it or any other symptom of aging, which hopefully we all get a chance to experience. That's part of the journey

of life. So I just thank you for it, and I thank all of you all for being a part of this and sharing your story and sharing your work and helping our listeners engage in a life of vitality. I'm gonna use that. I want to dig in more on today's topics and guests. Check our show notes, and if you enjoyed the episode, share it with a friend. All your friends and be sure to leave a review.

If you want more surprising stories about how we're all related, search and follow Spit on I Heart Radio or subscribe wherever you listen to podcasts. Spit is an I Heart Radio podcast with twenty three and me. I'm Barratune Day Thurston. You can find out more about me at barratune day dot com or on social media wherever Barratune Days are found