Jimmy Choi: No Easy Way- Strength, Stigma, and the Next Stage of the Journey

Episode Transcript

Dr. Correa:

From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:

And I am Dr. Katy Peters, and this is the Brain & Life Podcast.

Dr. Correa:

Saludos, and thank you for joining us again on the Brain & Life Podcast. Katy, now I'm still jealous of this pool that you have and now that you have a pool, are you swimming more or have you been adjusting your activity, movement, exercise for fun or health?

Dr. Peters:

Oh, I just love the pool. It's so great and it's what I've always wanted and what's really awesome is I can exercise, I'm really hot and I'm like, oh, I'll just do a little more. I'll go swimming again. But swimming definitely uses different muscles than CrossFit or biking or hiking. It's truly a full body workout. And I would say it also uses my mind because I find it more Zen and meditative than yoga. So swimming, exercise of choice. How about you?

Dr. Correa:

I do some on my own. I find that often I need the inspiration of getting together with others. I do some 15, 20, if I'm really inspired, 35 minute workouts on my own, but I have to either have a schedule I'm following together, I have a coach that helps me with my running program. But even with that, most of the runs I do, I meet with other people because otherwise I tend to just fall into a rhythm of like, oh, just a nice scenic jog around the city looking around, which is great in its own ways, but not always as challenging. Or I get up in the morning with this intention of like, oh, I'm going to do this workout on my own, and it really ends up being some light stretching on the floor. I'm rolling around a bit and maybe do some things that look like a yoga move and then eventually decide, oh, okay, that's good. I'll have my coffee now. Do you have a community that you connect with for movement or exercise or any other activities?

Dr. Peters:

So our old neighborhood actually had a masters swim group and you may hear masters like you're the expert, but it was really just sort of old people that used to be on the swim team. That's what I say. But my husband and I joined and it was really such a nice way to have a coach. I actually improved my swimming, and it's a group of people that really support each other. And it was more cooperative than really competitive, which is always a nice thing to have. How about you? I know you probably get out there and run. Do you ever run with a peer running club or anything like that?

Dr. Correa:

Yeah, in Harlem, there is a Harlem run club, Harlem Run, that I meet with, and actually there's only really one or two days in the week that I'll do any running on my own. Tonight I'm going to be going to the Monday night run with them. I find running easier for me in the mornings and I wanted another morning run, so I helped the group put together a group that runs Tuesday morning, so I'll do that tomorrow morning. And then I've made friends through that to help plan some of the workouts that I do and meet with them. I always find I'm more likely to show up and do the work that I have planned, even if I just know someone else is going to be there. It's not going to do some different workout, no problem. But that accountability and need to connect with someone socially, is always really helpful. I mean, have you invited the Masters swimming group over to your pool yet?

Dr. Peters:

Oh, not yet. Not yet. We finally just got all the landscaping done, so it's no longer pool plus construction site. So we did have our neighbors over and I will say, shout out to them, their kiddos really enjoyed the pool. They're going to be in Masters Swim tomorrow, probably. They're that good.

Dr. Correa:

Well, we've mentioned it before and along with the idea of community exercise and inspiration, this week we are welcoming back Jimmy Choi from earlier episodes. He has continued to help many people explore incorporating more movement and exercise in their days. And yes, a lot of that started with him helping share and bring more awareness about living with Parkinson's disease and other neurologic conditions, and many of its features and helping decrease the stigma and improve understanding about Parkinson's. But his inspirational voice I think inspires many people to move more and incorporate exercise in their day and actually we'll be including in some clips from his social media throughout the episode, along with the interview with Jimmy Choi.

And we'll have then a follow-up as our medical expert, a member of the Fox Foundation, the Michael J. Fox Foundation, and one of their physicians that works as our medical expert to speak with us about living with Parkinson's, some of what we've learned from the community and the importance of that voice.

Welcome back and I'm thrilled to reconnect with father, athlete Parkinson's advocate, record-breaking American Ninja Warrior Jimmy Choi. You may remember him from our earlier conversation in 2022, and if not, make sure to go back to that because our story is going to be building from there here. In that past conversation we explored his diagnosis, transformation through movement and exercise, and fundraising successes that he's had in supporting the many organizations supporting Parkinson's disease, and his own experience. Since then in Jimmy's journey, he's continued to inspire many. Many of you, if you're following on social media, have seen him or heard his messaging. And this last summer he returned to Ninja Warrior stage and shattered expectations once again. We look forward to hearing about that now.

Thank you so much, Jimmy for joining us again on the podcast.

Jimmy Choi:

Oh, thanks for having me on again. It's been a long time and I'm excited to have another discussion with you.

Dr. Correa:

So I wanted to start off and throughout this episode we're going to feature also because I really would like to draw people's attention to your regular messaging and story of your own experience and recommendations to others, of incorporating exercise into a routine. And we'll have some clips mixed in from your social media. But it's been nearly three years since we last spoke and you recently returned to American Ninja Warrior at age 50. I feel the intimidation already. I'm trying to just keep up with my physical events of running and activity and you called this your best run ever. What was different this time and tell me about the experience.

Jimmy Choi:

You know, I think it was my best run ever, just from the standpoint of there's no expectations going in this time around. And I was out there with my daughter and I was so worried about her and so stressed for her, that I didn't have time to worry about or stress for myself. But at the end of the day when I look back, it's like, you know what? I came back on American Ninja Warrior so I can compete with my daughter. How many fathers have a chance to ever say that, right? So I came back to have a chance to compete with her, but at the same time I went out there and I just had fun. I didn't worry about expectations. I believe that people know the work that I put in to be able to do the things that I do, and now there's nothing to prove. There's nobody to impress. So I just went out there and had fun. And that's exactly what I did. I had a blast.

Dr. Correa:

After your run, you posted a video describing, "It all starts with you work out, eat well, build the best care program for yourself."

Jimmy Choi:

There's only one person who can put all this into action and that's you. You have to be the one who wants to build a care team. You have to be the one who wants to exercise, to change your nutrition habits. You are the one taking the medication or researching alternative treatment options that may work for you. This means it all starts with you. How you combine exercise, diet, everything down to the timing of a medication to help maximize your own care, is up to you.

Dr. Correa:

And that's such a powerful mantra and message and I like that you really speak to it as each person's own experience and what fits and works for them. Has your personal philosophy evolved for you in recent years?

Jimmy Choi:

It really has. Everything that I've done has learned through my own experience living with the disease, and I know that my experience living with Parkinson's is different than somebody else living with Parkinson's. I think we all understand that everybody is different, but at the same time, someone else living with a chronic illness, chronic disease, multiple sclerosis, essential tremors, someone dealing with cancer, we're all living our version of it. Because everyone else in that same community, in their same community experienced their adversities differently.

And I figured the way that I've figured is that if you can't learn from yourself and whether or not it's you want to call the mistakes that you're making or learning from the things that you aren't doing that you should be doing and your small adjustments that you're making and you're seeing the benefits of that, if you aren't learning from that, you're not making the best for yourself. But you really can't learn from it if you don't take hold of the reins for yourself and go out and do these things. This really is up to you because you're a neurologist and you give your patients suggestions on medication, on certain treatment, on exercise or whatever, but you can't be out there doing it for them.

Dr. Correa:

Exactly. Yeah.

Jimmy Choi:

And they're the ones that are going to be doing it and they have to give you the feedback to say, hey doc, this isn't working for me, or this is working really well. Can we go in this direction? You can make your suggestions, you can change them based on the feedback that you get from them, but if there's no feedback, you can only go by the statistical averages, and that may or may not hit. That's how that messaging came from is that we all need to take charge of our own care. And then provide the feedback and learn from it and then make changes and try to do better from there. And it's served me well for 22 years now living with Parkinson's.

Dr. Correa:

I think some people maybe hearing the message, maybe just only seeing you once or twice on American Ninja Warrior, only seeing a few posts might interpret that you're saying that just somehow with a little bit of combination of medicine and exercise, you've managed all the symptoms of Parkinson's and there's not been progression. I want to hear from you some reality about, okay, you do a lot and great for yourself, but would you say that you've somehow avoided any progression at all? Or what has changed for you?

Jimmy Choi:

Yeah, no, not at all. In fact, and you're right, some people that just kind of spot checks the things that I post on social media might only see the things that showcases the good, so to speak. But I also post the bad, and I call it the good, the bad, the ugly. I also post the ugly side of Parkinson's on social media. And at the end of the day, Parkinson's is a progressive degenerative disease, and I know that progression is happening. In fact, I don't recommend this to everybody unless they have talked through this with their care team. But I often go completely off-meds just to see where my true baseline is.

In fact, when I go and see my movement disorder specialist, I always go in a off-state so that she can understand my true baseline, and then I would take my medication while I'm there and then after our discussions I would come on and then she can see where I am when I'm on, and we can compare the two. So we know exactly how am I assisted by medication or not. But when I go off-medication or go to a complete off-state, we do UPDRS, and I have these numbers and the numbers don't lie. Progression is happening over the years, even though all the exercise and all the good eating and all the medication that I can take, progression is happening.

But I think the whole idea of me using the medication and exercise and diet and mindfulness and my whole mental shift in my everyday living with Parkinson's has allowed me to make all of those things in combination more efficient from my own stage in living with Parkinson's. But at the end of the day, I am not trying to put blinders on. I know that progression is happening and that's important for everybody to understand exactly how much they're progressing through time. Because I always say to myself, if I'm ever stuck in a situation where I'm completely out of meds, I need to know what I can handle and what I can't. When to ask for help, how to ask for help. And I'll never know that if I never put myself into these situations in a controlled, safe environment.

Dr. Correa:

I mean, I think an excellent point and glad that you're doing that and having that conversation also with your neurologist who's helping with you. And that you have that really sober perspective of also preparing for the situations when something might happen. We have seen situations where due to constipation and impaired changes in how they're absorbing medications, or some illness or infection happens and that disrupts all of the control. And when an individual or their family isn't prepared for that change, all of a sudden that might end up in the ER or have more complications.

Jimmy Choi:

Right. And that could be, just like you mentioned, these things that are unexpected could start the spiral of something more terrible. But I'm not saying that we can prepare for everything.

Dr. Correa:

That's true.

Jimmy Choi:

But if we can imagine situations and prepare for those situations, at least we're removing some of that uncertainty. We can't remove it all, but I always say that if you give me a cake that is half-eaten versus no cake at all, I'll take the half-eaten cake because at least I still have cake. And I think this is the same way, except in reverse is that if I can remove some of these situational items that I know I can take care of, if I can remove that worry, then I'll take it. Because you just never know what's going to happen.

Dr. Correa:

This focus that you've had on all of the other aspects of your health, both for yourself or Parkinson's, how has that changed also in how you think of the health for your family?

Jimmy Choi:

It used to be I need to keep myself capable so that I can take care of my family. That used to be the way that I think. So it became a necessity to make sure that I am at my best at all times. But I think as time evolved, and as my family... They live with the disease as well. They may not have it, but they live with it through me. But what I've learned is that I've learned so much more in terms of what my family is capable, in terms of their understanding of Parkinson's and especially my version of the Parkinson's. My kids, how many 16, 17, 18-year-olds do you know that can probably teach a course on Parkinson's? But my daughter or my son will look at me and ask me, "Have you taken your medication?" If I'm off. And they can tell, right?

And as time evolved, it became less of me thinking that they are always going to be dependent on me. And now that focus is starting to shift to the point where it's like, okay, I can start to depend on them to help me in my journey. So that now my focus on myself can shift away from, I would say more of the hardcore hard-stressed items. And we all know that stress is an elevator of Parkinson's symptoms, so I'm taking a lot of pressure off of myself, and by doing that, I'm able to, I think, more focus on my own general care. Because I know that I can lean on my family and rely on my family, I don't have to worry about them.

So over time, that just evolved to high pressure, I must be at my best to take care of my family, to, you know what, I've done a pretty good job at that. And now I can take more time, less stressful, but more time, more mindfulness to really work on myself for a more, what's the word? I don't want to say peaceful, but for a more balanced life with Parkinson's.

Dr. Correa:

And do you think you've seen lessons that your children and your family has taken that they've incorporated into their own health?

Jimmy Choi:

Definitely. For sure. My daughter has, there's no doubt about that. And my son has gone through a rough patch in the last year or so. So we're still trying to figure out his new normal. And unfortunately, I've made this public already, so it's not news, but my son has also been diagnosed with a movement disorder. Now he doesn't have Parkinson's. That was the biggest worry in our minds was is it Parkinson's, because it looked like Parkinson's. But his is a version of functional neurological disorder. So we're being told that it's trauma, mental trauma, stress triggered condition, and he can learn how to move back to more of normalcy, in a sense, more so than a person with Parkinson's can, but it's a lot of hard work.

But for a 16-year-old, that's a lot to swallow. But you know what? Just watching him fight, he was completely, as early as this past May, he was completely paralyzed from the neck down, but now he's able to... He's still in the wheelchair, but he's able to move his arms, he's able to play piano again. Not as well as he used to, but he's able to do those things. But just to see him fight back to this point, I think I would hope that a lot of that is because he watched his old man do it. He watched his old man fight growing up, and hopefully he's turned some of that into his own fight.

And the other difficult thing for us right now is that he has become nonverbal. He's unable to speak because of this condition. So it's really hard for him to communicate. But again, just watching him in the last few months, making his turnaround, making his comeback, I like to hope to think that he's learned a few things from his old man.

Dr. Correa:

Yeah. And we of course hope the best for his continued improvement and all of his therapy as he moves forward. And part of our follow-up discussion that we'll have after Jimmy and I finish with our medical expert, as we're continuing to talk about living with Parkinson's, we'll also discuss functional neurologic disorder and movement related symptoms that can sometimes be seen in family members. And I wanted then also to go back to April, I had to admit we had the idea of starting to do some reconnection episodes and updates. And I wanted in April, it was Parkinson's awareness month, but things slipped through our hands. But you posted and shared this phrase that there's no easy way, exercise is hard, exercise takes time, there's no replacement for it.

Jimmy Choi:

The first similarity I've noticed in those living well is that they're out there being their own best advocates. They're making a healthy investment in themselves by making some difficult life changes. Things like stopping smoking, losing weight, removing unwanted stress, choosing healthier eating habits, and of course starting or ramping up a fitness regimen. Now, unfortunately, this is difficult for many people because, well, life gets in the way, this is just my observation and my opinion, but the people I know living with chronic illness who have made such changes are more likely to better manage their condition than those who don't. Investing time and energy to make healthy changes usually pay off, resulting in a better quality of life.

Dr. Correa:

But I think for me, that raises that question and other people would say, okay, yeah, that's the push, but what motivates you to keep showing up for yourself and for the broader Parkinson's community on these hard days, and that consistency?

Jimmy Choi:

When it comes down to it, I'll be honest, you're not going to be able to find motivation every day. Now for me, it's always been my family. I want to be there for them. I want to watch my daughter play softball. I want to watch my son at his violin recitals. And my son was training to be a pilot, I want to be his first passenger, which I was last year, which was great before all this stuff happened. But it was all about I want to be there for them. And I like to say that that's part of the reasons what kept me going all these years. But at the end of the day, it really isn't. And at the end of the day, I think it's just developing that sense of discipline.

Discipline is hard. It's a learned trait. I guess. I don't even know if it's trait or a habit, but it's a conditioned habit to have, to have an alarm go off and says, now it's time to go to the gym. And no matter how you're feeling, it's like to me, it's my job. It's what I need to do to keep my body going. So I think it's a combination of things. My motivation is again, always my family. What can I do to be there for them, not just today, but in the future? But at the same time, there are just days where the body just doesn't want to move. But I've already got the gym in my calendar on my alarm every day, 6:00 AM, and I'm already up. What am I going to do sit here, just throw a pity party for myself, or just get my butt to the gym? Even though I may not be able to exercise as hard or do something as intensive today, but I'm doing something. I'm doing something.

And again, that's always better than nothing in my mind is doing something. So that half cake is always better than no cake. I think that the bottom line is that this is habit-driven. My motivation is habit-driven. And of course family-driven.

Dr. Correa:

I think it's great, that point of having both internal motivations and a goal, and focusing on that consistency, but also relying on also what are the other reasons and your purposes for doing it. And having something external to anchor to go to on those harder days. I love your example of approaching that and it's going to be different for each of us, what that means and what that purpose is.

Jimmy Choi:

Yeah, absolutely.

Dr. Correa:

Now, in our previous discussion, you told us that over time exercise had helped you cut your daily medication from 24 pills to around 13. Has your health strategy, training, timing, nutrition continued to evolve since then?

Jimmy Choi:

It has, and my medication intake still remains about the same. I think I'm maybe a pill, a pill and a half higher throughout the course of a day. So since we last talked, I've implemented a strategy of microdosing into my regimen, more so than I was before. I mean, when we last talked, I was doing half pills, but now I'm microdosing to the point of using quarter pills, and my timing is different based on my activity. So if I am in the gym, I am taking an extra quarter dose every 35 to 40 minutes, I'm just adding a quarter dose and just topping off the tank, so to speak.

Of course, I wouldn't recommend people doing this without first knowing how these medications affect them personally against their activity and what they're eating. And I've kept a log for many, many months, collecting that data on myself. Which is why I'm able to make these micro changes to my medication. But it has served me well. I think I've gotten as much efficiency as I can. Last time we talked was about three years ago, and I think I've only added minimal medication to my daily use because of that. And as much as I can continue to tweak that for myself, I think I will.

But if you look at it, the newest treatments that have come out in the last couple of years have been a subdermal patch. Which the goal is to have a level amount of carbidopa/levodopa in your system at all times. That's microdosing, but a machine or a pump is doing it for you. The same thing with the intravenous pumps. Same thing with the newer formulations of extended-release, carbidopa/levodopa, like Crexont. These things are all designed so that they're delivering microdoses in your system at all time. And I'm still doing that for myself and it's working well for me, but I can see myself shifting that strategy towards something more assistive in the future. But as of right now, I'm pretty proud. I'm doing pretty good.

Dr. Correa:

That's amazing. Great to hear it. And that really, as you said, and you were describing before, you're working through it, listening to your own body, really observing so much about your training and activity and having this discussion also with your neurologist.

Jimmy Choi:

Yeah. And I'm always constantly listening to my body. I'm always, like even when I'm in the gym making a functional move, I've got my eyes closed. If you ask my trainer, he's like, "Why are your eyes closed all the time?" My eyes are closed because I'm trying to feel my movement exactly where the little hitches are, or where all the little stutters and the stop and goes are, and what can I do to make that better? But it's to that point, and again, I know it's hard for a lot of people to hear that, "Man, that sounds like a lot of work, Jimmy." I'm like, yeah, it is a lot of work. But when you put in that time and you're able to get to the point where I am, people always ask, "Jimmy, how do you do it?" Well, I'm telling you how I do it, but you're telling me that you're not willing to do it because it's a lot of work. And that comes right back to no one's going to make you do this except yourself.

Dr. Correa:

Yeah, yeah. Yeah. I mean, I think whatever the things that we care about in life, training for the parts of life that we care about is going to be work. But also hopefully you're finding a joy to it. You were talking about closing your eyes and I was just thinking of a video I saw you recently post talking about the difference in tremor with your eyes open and closed. And then you put a bag over your head and started chopping with a knife, and I think it was a cucumber or something, and I was just like, oh my gosh. But yeah, you were able to demonstrate just for yourself the difference in coordination and the tremor. It was just an interesting demonstration.

Jimmy Choi:

I do these things, Parkinson's awareness to me isn't creating Parkinson's awareness to other people with Parkinson's, because they live with the disease. They don't need to be aware that they have Parkinson's. Parkinson's awareness I think for me is to teach those people who don't have Parkinson's exactly what it's like, or give them ideas of what it might be like and give them ways to try to feel some of the things that we feel. Hopefully it creates more empathy in the world and it removes a lot of that stigma that we get out there, living in the real world with Parkinson's, and that is one of my ways to show people that, hey, you know what? People always talk about tremors with Parkinson's, but there are different kinds of tremors. There are active and resting, and there are even people with Parkinson's without tremors. But yeah, my content online is really just trying to engage those people outside of the Parkinson's community.

Dr. Correa:

And you've been a powerful voice. I really appreciate your voice. Not only as an athlete, a father, a fundraiser, you've done work as a patient council member for the Michael J. Fox Foundation. As you've already pointed out, the stigma and misunderstanding around Parkinson's are still major hurdles. You were just sharing how you want to help people, especially people who don't interact or have an experience with Parkinson's, understand what it's like to live with Parkinson's. What reactions have you gotten since your last Ninja appearance, and how do you hope to shift public perception?

Jimmy Choi:

The reactions I've gotten have been mostly positive. And not just from the Parkinson's community, a lot more this time around from other neurological conditions. Their versions of their Jimmy Chois have reached out to me and we just want to talk, and we just want to want to compare notes, so to speak. How can we work together? Because at the end of the day, all these neurological conditions are connected and in some way. I think if we can ever figure that out, that'd be a great step in itself. But the public perception of who I am, I hope doesn't change. And I hope that that perception is that Jimmy is a fighter, and that he uses lessons in life to learn to push forward, and that people can do the same.

It's not hard. Again, you don't have to be an American Ninja Warrior, but you can be the best version of whatever it is that you're trying to accomplish. There has been a lot of people also that have come out and say, "How can I be an American Ninja Warrior?" And I'm more than happy to provide them with guidance on how to achieve it. But I told them at the end of the day, at the end of the day, it's up to you. You're the one that's going to have to go out there and put in the work.

Dr. Correa:

Do that work.

Jimmy Choi:

Yeah, and I think it all comes back to everybody that's out there looking for some type of either motivation or inspiration, or whatever it is, right? Many of them don't realize that the motivation and inspiration is themselves.

Dr. Correa:

Yeah. And you've broken multiple world records, you've inspired millions on social media. You've taken on the Ninja Warrior course yourself, and now most recently with your daughter. So we said sometimes you're not necessarily going to be competing or comparing with your past self, but what are you thinking about next?

Jimmy Choi:

For me, next steps is my focus is 100% on my son Mason right now.

Dr. Correa:

Yes.

Jimmy Choi:

That is next. The next is to help Mason learn the tools that he needs to live the best life that he can with his own version of a neurological disorder. I joke, and I don't joke, because it could become a reality. I told him, I'm done with American Ninja Warrior, but if I can get Mason to the point where he can compete on this show, you'll be 100% certain that I will be right next to him. So my project is now making sure Mason is able to make the progress that he wants in his own journey.

Dr. Correa:

Yeah. And we wish for him the best quality of life and progress as he moves forward.

Jimmy Choi:

Thank you.

Dr. Correa:

I wanted to hear, to come back to as we kind of closed last time, but now with your further growth and mindset, for someone newly diagnosed or feeling overwhelmed, maybe with Parkinson's, maybe it's another neurologic diagnosis, what message would you leave them with, especially if they're not even sure where to begin?

Jimmy Choi:

I think you hit the nail right on the head right there is that don't react based on your emotions. When something new has come up, when you're given a diagnosis or something new is happening to you, don't react based on your emotions. Don't jump to a reaction immediately. Take time, take a step back, take a deep breath. Educate yourself, gather data, seek guidance or information from experts, and then make a more educated decision on what to do next. So unless it's life and death, you're reacting like rashly isn't going to help anybody, but if you take the time to sit back and really understand what you're dealing with and make a better decision on how to approach it, that's going to serve you better over time.

Dr. Correa:

Yeah. Well, thank you so much, Jimmy for joining us. I loved hearing more about your progress and the work that you've been putting in, not just for yourself, but really also for the community.

Jimmy Choi:

No, thank you. And thank you for continuing to do these podcasts because it's not just when... Even me living in the Parkinson's world, listening to these podcasts isn't just about Parkinson's, Parkinson's, Parkinson's, but understanding other brain areas has really helped me understand more about Parkinson's as well. So keep up the good work. Thank you for having me on again.

Dr. Correa:

Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Now, we heard from Jimmy about his son and his functional neurologic disorder with movement symptoms, and we want to continue that discussion. So stay tuned. In the next coming weeks, we're going to continue the discussion with medical experts from different fields within functional neurologic disorders, and particularly with movement specialties to get more information about that.

And now we're joined today by Dr. Rachel Dolhun, a double board certified fellowship trained movement disorder specialist, and a nationally recognized leader in the Parkinson's community. Dr. Dolhun serves as the principal medical advisor at the Michael J. Fox Foundation for Parkinson's Research where she helps people with Parkinson's and their families understand the science, treatments, and daily strategies for living well with their disease and their condition. She's also a lifestyle medicine specialist, bringing expertise on how exercise, nutrition, stress management, and holistic approaches can help empower them and their caregivers.

We're thrilled to have Dr. Dolhun with us today to provide medical insights into Jimmy's continued Parkinson's journey, the role of exercise, medication strategy adjustments. And how to help us better understand conditions like functional neurologic disorders that can affect families with neurologic challenges and present with movement symptoms.

Thank you so much, Rachel, for joining us today.

Dr. Dolhun:

Thank you for having me. It's great to be here.

Dr. Correa:

So we all get to enjoy Jimmy's videos and clips and the perspective he brings. And he's shown us how powerful exercise can be in living with Parkinson's. From your perspective as both a movement disorder specialist and a lifestyle medicine expert, what do we know from science about the role of exercise in slowing progression and managing symptoms and life with Parkinson's?

Dr. Dolhun:

Exercise is simply the number one thing people with Parkinson's should be doing, and hopefully before, long before diagnosis. This is an area too where we really want to get people to understand earlier is better, but it's never too late. But really for everyone with Parkinson's, no matter where you are with the disease, it is critical to exercise. It is just as important as the medications that you take, as the other treatments we might prescribe. And there are several reasons for that. There's the scientific ones, as you said. It improves blood circulation, it decreases inflammation. It increases what we call growth factors, which are sort of fertilizer for the brain that helps strengthen connections between the brain cells and grow new connections.

The brain can change, so exercise can change your brain physically, just like it can change your body physically. So there's the science, the under the skin kind of things that are happening. But then there's also the day to day, there's so much of Parkinson's that can improve with exercise. And a lot of what we talk about or look at in Parkinson's is of course the movement, tremor, slowness, stiffness. Those are the symptoms that most people think of when they think of Parkinson's. But there's so much of Parkinson's that's non-movement or non-motor, and those are things like mood, sleep, constipation, cognitive, memory and thinking changes. Exercise is critical for all of those. So it can help with all of these non-movement symptoms, boost mood, improve sleep, ease constipation, and that's really critical when we don't have as good of treatments for a lot of these non-motor symptoms that can happen in Parkinson's.

So that was a long way of saying exercise really, as I said, is the number one thing. We'll talk a lot I'm sure about how it has to be adapted, and we have to talk about the realities of exercise for people with Parkinson's or for all of us with busy lives, but it really is critical for everybody with Parkinson's or everybody at risk for Parkinson's to be exercising.

Dr. Correa:

Yeah, I mean that's exactly the next thing I wanted to think about. And some of Jimmy shares his own experience and perspective, but like we said, the practicality of it. With people who get interested and decide they want to try out running, there's a cautious process and they might even find suggestions for, a plan from a couch to a 5K. For someone who has felt very limited in their mobility already, maybe thinking of themselves as spending more of their time in a chair or on a couch, what might be some ideas for them taking those steps of a couch to movement to exercise class? Maybe not as lofty as the 5K, but just where to get started.

Dr. Dolhun:

I always say everybody, or we hope at this point, everybody knows they should exercise. Parkinson's or not, right? It's about how do we exercise when our lives are not set up for it? We're sitting at desks, we're driving in our cars, we're parking as close as we can to the store. How do we bring exercise into our life, not only with busy lives, but then also with Parkinson's? And you talked about this. If you have falls and you're worried about standing or you have low blood pressure and you get off balance, or you have apathy which decreases your motivation and you feel like even though I know I'm supposed to exercise, I just cannot get up the motivation.

So when thinking about exercise for Parkinson's, it's moving past that quickly. Everybody should do it. Okay, we all know, we all agree on that. Now what are the things that may be getting in the way? And so that's a really important question to ask first, is if you're not exercising, what is it? Is it time? Is it not knowing about exercise? Is it not feeling safe? Is it having symptoms that get in the way? So let's work to identify those things so that we can then address them. Because there is a lot, you can do. You can do a lot of seated exercise if you don't feel comfortable standing, or you get off balance. You can adjust your medications around exercising if symptoms are getting in the way.

You can work with physical therapy and build in more schedule and goal-directed activity if apathy is part of what you live with with Parkinson's. So it's really about that kind of getting down beneath the surface, and thinking about what is it that gets in the way of exercise. And then probably just as important, what do I want to get out of exercise? Because for some people, and I think for a lot of us, again in our lives, it's like that's far down the road. Maybe that will or won't happen. I don't need to worry about exercise right now. But what is it that you want to get out of exercise?

So my point being when we say it'll help you live healthier, it's good for your brain health, maybe that's not enough for people. But if we say, I want to run a 5K, or walk a 5K. Or I want to be able, I love a community member said this to me once. I want to be able to walk hand in hand with my wife and not feel off balance. I want to play on the ground with my grandkids and be able to get up without a problem. So when we set those goals and make them specific and tangible, then that helps us exercise when we don't feel like it, when it's raining, when we're tired, when we're all of these things. And so it's getting at the challenges and working around them and then having that goal in mind that we're working toward.

Dr. Correa:

I think that's all really helpful and gives some ideas for people [inaudible 00:43:15] with some of that support circle they have. Whether it's their physicians, the therapists that they're working with or even one thing I was wondering is about the resources that could be available with connecting with other community members and other people through the Michael J. Fox Foundation. If someone doesn't feel like they have that accessible place for starting that discussion with a therapist or a physician near them, or that they're working with, are there places that they can go to or you would suggest they reach out to?

Dr. Dolhun:

Absolutely. So the Michael J. Fox Foundation does have an online sort of chat platform where people can connect people living with Parkinson's, care partners, loved ones can connect with other people. And learn from others' experiences, ask questions like this and hear from other people what their experience has been. And I always say too, you and I, we know how to treat disease. We know maybe everything there is to know about seizures or about Parkinson's, but maybe we don't know firsthand. I don't. I don't know if you have experience, but I don't have firsthand experience of living with Parkinson's.

So it's that connection with somebody else who, one, understands exactly what you're going through, and two, has the lived experience to say, this is what I found works, this is what I found doesn't work as well. And benefiting from that. And people want to share this community is so embracing and so welcoming and open and willing to support, wanting to support.

The other thing is that there are a lot of Parkinson's specific exercise programs. Both in the community, whether it's through a local community center or your doctor's office knows of gyms that are offering these. There's a lot that are online too. So getting in those community and social opportunities is also helpful. Because, one, you have that support system, as you mentioned, social connection is also an important part of living well with Parkinson's. So you're building up that support system at the same time as you're getting the benefits of exercising. And then you also have that accountability built in. Because if you're in a group and you don't show up one week, probably people are going to reach out and say, "Hey, what's going on? Are you coming back to exercise class?"

Dr. Correa:

That's true. Yeah, I mentioned that in the introduction. Now many people with Parkinson's wonder as they're moving on and they're getting that regular accountability, they're participating in these activities, and something that Jimmy highlights, they start thinking about well, how to balance the medications, the exercise, the diet, and the rest in their day. So that they can make sure that they are on for the times and the things that matter most to them. What are some practical strategies or principles that you think people should consider in building that management plan?

Dr. Dolhun:

Well, one is of course working with your doctor and working with a physical therapist if that's available to you. Because physical therapists, especially those who have expertise in Parkinson's, are very knowledgeable at helping you build exercise programs, set goals, like we talked about and adapt as life with Parkinson's moves forward.

The second thing is, you alluded to this or you talked about Jimmy talking about this, is prioritizing. So for example, if you feel fatigued and that gets worse throughout the day or you know your apathy just makes nothing possible after 5:00 PM, then prioritize your exercise in the morning if possible. And you may even have to prioritize specific types of exercise. So when we talk about exercise, we often think you mentioned running. So we think about aerobics and we think about getting our heart rate up. That's absolutely key, but we also need to be doing things like weight-bearing or weight lifting and flexibility and balance and stretching.

And so it's thinking about which activities do I really have to focus on or really prioritize so that if I can't get anything else in, then I know I've gotten that in the beginning of the day. Another big one is I always call them exercise snacks. I think that's a word that's gaining traction in the community. And I say, who doesn't love a snack? But you can get just as much benefit by doing three 10 minute sessions throughout the day. So maybe 30 minutes at one time is just too much, but 10 minutes scattered throughout the day works better for you. Or building it in through your day. Again, I mentioned being so busy, but if you're watching a show, maybe during commercials, you get up and do some squats or you do... Figure out how you can build it into your day. And you can manage the energy that it takes to do the exercise, which we know is so important.

And then on this question of medication, it's really a bigger question of how do we exercise, as you said, at the times when we're most on? So people with Parkinson's who are listening will know this, but there are times with Parkinson's where you take your medicine and it's working really well, but then it wears off and your symptoms come back. And for some people they don't notice much of that but as disease progresses over time, that may become more of a challenge. Sometimes people notice it too with exercise that their symptoms actually increase. Exercise is a good stressor, it's a stressor, but it's a good stressor and that increases your symptoms.

So some people notice some increase in symptoms while exercising or they feel like they go through their medicine a little bit faster. And so there is a lot that we can think about as far as adjusting medication to get us started exercising and keep us exercising. So for example, as I mentioned, trying to find the times when you're really on. So if you know your medicine's typically working really well at 9:30 every morning, then let's schedule your exercise for 9:30 or let's schedule the physical therapy session for after you take a dose and that you'll be on.

Now some people who exercise a little bit more intensely like Jimmy and others, maybe they need to think about too, taking smaller doses or adjusting even throughout longer sessions. That's something that we don't have as much data on. And again, back to the lived experience. And a lot of Parkinson's is this way too, with taking medicine, adjusting your medication again with your doctor's help, but to keep you on and moving for the activities that are most important for you.

And the last thing I'll say about it too is because a lot of people wonder when they should start taking medicine for Parkinson's. And I always say if and when your symptoms get in the way of what you want or need to do. And exercise is something we want you to want to do, but you need to do. So if symptoms are getting in the way of that, then that's where exercise can help you and exercise and the medicine work hand in hand. The exercise helps the medicine work better and the medicine helps the exercise work better.

Dr. Correa:

Yeah, I mean you were talking about adjusting the dosing and the schedule. Jimmy referred to this idea of microdosing with his medication. And to be clear, he's talking about microdosing specifically his Parkinson's medicines. The term microdosing gets used for lots of different things. And there's also now been extended release formulations and other delivery methods of levodopa. I know it's probably the unanswerable question, and as you said, some of it is more from the lived experience of the community, but from the science and the lived experience of the community right now, what do we know about how to make these fit for each person?

Dr. Dolhun:

As you mentioned, we have seen so many new treatments come on market just in the last 10 years. Since 2015, there've been something like 20 new treatments for Parkinson's. And in the last year there've been five new ones, whether they're medications you mentioned extended release, or these under the skin infusion ones that go consistently in the bloodstream, kind of like an insulin pump. They're infusing all the time. And there've also been advances in some of the surgical techniques that we can use for Parkinson's. So one criticism we get on this is levodopa has been around since the 1960s. Why are we not doing better? And I hear that loud and clear. We are using a medication that has been around for a long time.

Now, the one thing is we're using it because it works and we know it works really well. But the other thing is it does have some shortcomings. I mentioned that over time it can wear off and not last as long. There can be other challenges that can come with it. So a lot of the research has been innovating on what we know works but can work better. So one example of this is this, as I mentioned, under the skin infusion. There's actually two different medications that now have that delivery method. Where the goal is that we keep the medication consistent in the bloodstream, and so that it provides more of a steady level of medication and therefore a steady level of symptom control. So that you're not going up and down as you take pills and they work and then they wear off, and then you take the pill and go through the same cycle. But that we have this more consistent level of medication and level of symptom control.

And what's nice about the several that we've seen in the past year or so, is that they're, one, more for progressing Parkinson's. So as we live five plus years with Parkinson's and develop some of these changes, historically we haven't had as much new to offer at that point. And then the second thing is, as you mentioned, more options gives more chance that we'll be able to treat more people with Parkinson's more effectively. So every medication, no matter what disease it is, every medication is not going to work for every single person. And so it allows us to continue working toward that more personalized and more tailorable medication.

Dr. Correa:

And Jimmy, as we were continuing our discussion, also shared a little bit more about what's going on with his family and his son's recent diagnosis with a functional neurologic movement disorder. We recently had an episode where we touched on functional dissociative seizures and heard from Dr. Curt LaFrance about functional neurologic disorders. But can you help us and our listeners understand how functional neurologic disorders can show up with movement disorder features?

Dr. Dolhun:

Well, I think, I don't know all the data on this, Dr. LaFrance probably shared much more, so go there to learn all of the details. But I know that movement symptoms can be a common part of functional neurological disorder. The correlation between functional neurological disorder and Parkinson's isn't probably quite as well studied. And I think that the bigger thing, especially in Jimmy's story, I shouldn't say the bigger thing, but one of the big challenges that we see for parents who have Parkinson's is, am I going to pass this on to my children? Whether it's Parkinson's or it's another movement disorder, that is such a common worry, probably second or third after what is Parkinson's and why did I get this?

It's how is it going to impact my family and how is it going to impact my children? Because every parent wants the best for their children and doesn't want them to have to live with anything, especially like they're living with with Parkinson's. So I think it's a very common concern for people with Parkinson's, maybe not of course FND, but Parkinson's itself. And we get a lot of questions on what is my children's risk for this disease? What can I be doing to help them along now? Should I share my diagnosis? Depending on their age and how will this impact them even just outside of their potential risk for Parkinson's?

There's a lot that we do know in that. One, on the genes, we do have genetic testing for a lot of the genes that are linked to Parkinson's. Lots of challenges around that, of course, and very much a personal decision on whether you pursue that and depending on the age of your children and things like that. But that helps us get a little bit more information on do you have Parkinson's in your genes and could that have been a risk that potentially could have been passed along? Genetic counselors are very adept at helping work through these kinds of questions and this testing.

The second thing to remember too is that having a family member with Parkinson's does increase your risk, but that's separate from genetics, and it's a small increase in risk. So if our risk without a family member of getting Parkinson's just in the general population is about 1%, and say, your risk goes up three times, well, it's still 3% if you have a family member. So it's increased, but it's still fairly low. And then, as I said, family history, having a family member, just because you have a parent with the disease doesn't necessarily mean it's in your genes. There's a lot of one genes that maybe we don't know about yet, but two, a lot of environmental factors that play a role in Parkinson's. And so families of course, share the same environment.

And so there's a lot that we, as I said, think about with Parkinson's with parents who have Parkinson's and think about with their children. And we're getting more and more data to help people understand this better and use that to make informed approaches to sharing their diagnosis and working through it with their children.

Dr. Correa:

Yeah. And for our listeners who heard some about the environmental risk factors and want some more information, please go back and check out our episode that we did with Dr. Michael Okun and how he speaks about some of what we know about environmental risk factors for Parkinson's and other movement disorders. And Jimmy shared about caring for his son with this functional neurologic disorder, while also managing his own Parkinson's. For people with Parkinson's disease who wonder about their children's health, or other conditions running in the family, but then also stepping into that role as a caregiver and care supporter, even if they're not just a parent. How do you help them and how does the Michael J. Fox Foundation also help them think of having that dual role?

Dr. Dolhun:

Well, I'd say two things. One is, we mentioned this earlier in the podcast, but the earlier, the better with all of these kinds of lifestyle things, exercise, diet, sleeping well, connecting with others in the community. And the more and more we can bring those earlier into our children's lives, whether we have children or not through schools, through community, et cetera, the more we're going to be able to potentially prevent, but definitely delay the onset of some of these neurological conditions. And that's a really exciting area where we have more and more data showing that there are modifiable risk factors throughout life for memory and thinking problems, and potentially for Parkinson's and other neurological diseases.

So one is one of the best things that you can do for your children when you're worried about their risk of Parkinson's or another neurological disease is get them exercising with you. I know Jimmy does this with his daughter for sure, but get them exercising with you. Work on a healthy diet, bring all those lifestyle concepts in early and make those a way of life for them from early days.

And then second, your question about being a care partner is really a tough one for a lot of people, as you said, whether it's parents who are caring for their children who don't have Parkinson's, but they have Parkinson's. If people are part of the sandwich generation and they have kids and have older relatives, whether or not they have a disease themselves. A lot of people, Parkinson's or not, are really balancing this role. And it's really tough, and I think it's something we don't talk about enough. One is I hear from care partners all the time who say, "Stop telling me to take care of myself. How and when am I supposed to do that? It's a nice idea, but tell me when I'm caring for my loved one, when I'm caring for the household, when exactly, and how exactly am I supposed to do that?"

And so I think one thing is really just to know that it doesn't have to be a huge undertaking. It doesn't have to take a ton of time or a ton of effort, but if you can find five minutes, which hopefully everybody can find five minutes or even three minutes. If you can find that much time every day, just do something to take care of yourself, whether it's getting outside and letting the sunlight soak in. Or taking a walk around the block, or just taking some deep breaths. Or listening to your favorite song. If there's something that you can point to, to take that time and take care of yourself, and hopefully you can gradually build on from there.

But it's so important that as care partners, we prioritize our own well-being. And again, I realize that's easier said than done. And I know for a lot of people that feels like impossible, but we have to make it happen for ourselves, even if in three, five minutes. And if you don't know how to get started or don't know where to start, ask other care partners as we talked about. Go to the community, there's other care partners who are living with this and struggling with the same things. Ask your doctor, ask your loved one's doctor. Ask their social worker. There are a lot of people out there who can help you, and you don't even have to know what help you need. You just need to ask for it.

And Jimmy's probably a perfect example of this, right? Because Jimmy keeps up his exercise, I assume, probably has days when it's harder than others. But these are things where Jimmy knows exercise is critical for his well-being, for his Parkinson's and so he maintains that despite everything that's going on. I'm sure he's made adjustments and adaptations maybe to the timing or the amount, or those sorts of things, but he's prioritizing things that he knows are part of his well-being so that he can take care of his son the best way he can.

Dr. Correa:

Yeah. And Rachel, I've learned so much from the community living with different neurologic conditions that I, even as a physician, just didn't necessarily think of for myself or for my family and have incorporated into my life. I'm wondering what has been your experience? What are some of your favorite lessons that you've learned from, whether it's the community living with Parkinson's or the community in general, that you've brought back home?

Dr. Dolhun:

It is such a good and challenging question. I think truly I learn every time I interact with somebody in the community and every time I speak with them. And as you said, it's about that firsthand experience, but it's not even just the practical strategies. There's so much as you probably are alluding to, that I learn about. This is how I take my medicine, or this is what I think about with this and this is how I manage that symptom. But it's even really, I think what I've been really struck by is more the attitude and the approach to living with something like Parkinson's.

There are so many people who admit the reality of it, of course, nobody would wish for this disease. Nobody would want this disease for themselves or for their loved ones. But when you live with it and you're able to accept it, which is not resignation, but you can accept it and move forward, you start to see things in a different way.

And I think exercise is probably, lifestyle is probably one of the biggest ones for me. And I for a long time, would get questions from people no matter what we were talking about, what's the best exercise, what's the best diet? And I would give these generic answers on the exercise you'll do and a healthy, balanced diet that nobody even knows what those mean or how to incorporate them in their lives. And what I started to see from that is look at this community that is so curious and so engaged and wants to take action and take control where they can. And that's really what led me personally to learn more about lifestyle, to get a certification in this.

Currently I started living better myself and running and eating a different kind of diet and things like that. But I think it's that sort of thing that the community is so curious and so engaged, and wants to take action where they can, that I'm constantly inspired by that. Whether it's the actions they take in their daily lives, or the actions they take as part of the broader community, helping other people by sharing their experience or fundraising or participating in research, or advocating for public policies related to environment. But the community is really strong and really engaged and really inspiring.

Dr. Correa:

And you mentioned about taking action and fundraising. Jimmy has definitely been a star in that in so many ways, not only bringing awareness to American Ninja Warrior, but running marathons and running many physical fitness events and fundraising. But if someone else is interested in doing something like that and supporting Michael J. Fox Foundation or Parkinson's Research through action, through fundraising, where can they start?

Dr. Dolhun:

Our website has everything you need to know, it's michaeljfox.org. But to your point, there's opportunities to look for research studies, to fundraise, whether that's doing a bake sale or running a fun race to raise funds, advocating with our public policy team. But then also getting educational materials. So we have a lot of information on exercise, on diet, on the latest research, et cetera. And so one way to take action for yourself or for your loved one is simply to get more information.

Dr. Correa:

And you mentioned also then advocacy. Is there some place or some specific action you think right now that the voice of the community living with Parkinson's needs to be heard?

Dr. Dolhun:

We were actually just on Capitol Hill, I went for my first time to advocate for sustained and continued research funding from the government. That's probably the biggest area right now where we're focusing our efforts. Then also, we're hoping for a ban on Paraquat, an herbicide or a type of pesticide that's linked to an increased risk of Parkinson's. And then also on the national plan. So listeners may have heard that there was a national Parkinson's project that was passed that will establish a government and private collaboration to improve research and care for Parkinson's. And so we're really advocating that that council for that plan gets seated.

Dr. Correa:

Absolutely. And for more information on that plan, check out our past episode with Representative Jennifer Wexton where we had more information and discussion on that. And please check out the website. I know from my perspective, it's unfortunate to hear that there's questions about the access to telehealth that may be impacting. And so many people have seen how important telehealth has been after COVID and for improving access around many conditions, including Parkinson's. And so if any of these issues are important to you, then please reach out to your local policy members, legislators, and find more information, both through the American Academy of Neurology and the Michael J. Fox Foundation and other organizations that represent the conditions that matter to you and your family.

Rachel, thank you so much for joining us today.

Dr. Dolhun:

Thank you for having me.

Dr. Correa:

Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Peters:

Also for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:

You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We are your host, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr. Correa.

Dr. Peters:

And Dr. Katy Peters joining you from Durham, North Carolina and online at Katy Peters MD PhD.

Dr. Correa:

Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:

We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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Jimmy Choi: No Easy Way- Strength, Stigma, and the Next Stage of the Journey

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