In this episode Dr. Daniel Correa speaks with Parkinson’s disease advocate and American Ninja Warrior Jimmy Choi about his early-onset Parkinson's diagnosis and how it impacted his physical abilities and mental health. Jimmy talks about his dedication to fighting stigma and educating future generations on the misconceptions about Parkinson’s disease. Next, Dr. Correa talks with Dr. Allan Wu, neurologist and assistant professor at the Parkinson’s Disease and Movement Disorder Center at Northwestern University. Dr. Wu explains the physical and mental challenges that accompany a Parkinson’s diagnosis and treatments that are available.

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Episode Transcript

Dr. Correa:
Welcome back to the Brain & Life podcast by the American Academy of Neurology. Audrey, how are you doing today?

Dr. Nath:
Good to see you. Who did you talk to this week?

Dr. Correa:
I had a great conversation with Jimmy Choi. Jimmy Choi has been an advocate and a fundraiser to help support Parkinson's disease for a long time. He's competed on American Ninja Warrior, if you've ever seen the show.

Dr. Nath:
Incredible.

Dr. Correa:
He was diagnosed with early onset Parkinson's disease and in his years after he kind of got control of what was going on and he got involved with the Michael J. Fox Foundation and Team Fox. The Michael J. Fox Foundation has a team that fundraises and advocates for research and for care. And through them, he's fundraised through thousands of miles of different physical feats and has competed on American Ninja Warrior.

Dr. Nath:
That's incredible.

Dr. Correa:
He shares his experience and challenge fighting the stigma that many people have with Parkinson's and their misinterpretations of the tremor and the dyskinesias, and we get to explaining some of that also with our medical expert later in the episode.

Dr. Nath:
Wonderful. So looking forward to hearing from him and hearing about how Ninja Warrior went and for everyone in the upcoming episodes, we've got part two of Women's Health. With good friend Amy Hessler, so that'll be fun, as well as an episode about gratitude on Thanksgiving.

Dr. Correa:
Welcome back. Our guest today was diagnosed with young onset Parkinson's disease at 27. Despite many challenges over time, he has not let his diagnosis stop him at all. He maintains a very active lifestyle and is a proponent of exercise and the management of Parkinson's disease. In his efforts to raise awareness for Parkinson's, combated stigma and fundraising, he's raised over $250,000 for research, competing over 2,500 miles in marathons, ultra-marathons, cycling races, competed in American Ninja Warrior five times and is a two-time world record holder. He has done all these things while being a husband, a father, and working in the tech world.

Jimmy Choi:
Well, thank you for having me. I'm excited to have this conversation. Just one quick update on some of those numbers. Which is really the number I'm most proud of is that actually today my wife and I have helped raise over $750,000 for Parkinson's research. So we're really excited about the work that we've been doing last couple years and we're going to continue pushing that forward as long as we possibly can.

Dr. Correa:
That's amazing and that's great to hear. At age 27, you were newly married to Cheryl, your wife. The two of you were enjoying and celebrating your new son Mason, and you were working in the tech companies in the midst of the dot-com boom. Can you share with us about your life and your family before Parkinson's even entered it at all?

Jimmy Choi:
Cheryl and I are high school sweethearts, so we've been together for quite a long time. We got married in year 2000, and I was only 24 at the time and she was about a year younger. We thought we had it all. We had just gotten married, we had good professional lives, thought we were going to travel. We were going to start a family and just the American dream. But then when I was 27, which is just three years later, I was diagnosed with young onset Parkinson's. At that young age, the furthest thing from my mind was Parkinson's and the furthest thing from anybody's mind at that age would be Parkinson's. So to be honest, I didn't think anything of it. The things I was feeling was the rigidity, flowing down of my movements. There was a disconnect between thought and movement and then minor tremors here and there, even at the early stage.
I was losing my balance and of course I just thought that it was everyday life. I was active, I played a lot of golf. I would carry my clubs and sometimes I would play two rounds a day carrying my clubs. So if I woke up stiff and with rigidity, and that's pretty normal with being so active. I was in a high -stress job in the beginning of the dot-com boom. Everything was a race. So twitches here and there can be attributed to stress. So I just thought it was just everyday life. We had gotten married and we're starting to plan our family and my parents said, "Well, if you're planning a family, it's time to buy life insurance." So when I was buying life insurance, they send the nurse to my house to do a physical, and the nurse that came to do the physical noticed things about me.
And then she said, "Look, I'm not here to give you a diagnosis and I can't give you a diagnosis, but I do these insurance physicals on the side. And my regular day job is I am a nurse in a neurology office and I'm seeing things about you that's very familiar to me." She never mentioned Parkinson's. She says, "I just want you to have a discussion with your general practitioner about the things that you're feeling and focused around this X, Y, and Z." And she noticed my arm wasn't swinging when I walked. She noticed my pupils were dilating very, very slowly and really that's what prompted me down the road to diagnosis. Otherwise, I probably would've sat there and ignored it for many more years thinking it was just life.

Dr. Correa:
It's wild to have it come up as a part of a life insurance discussion.

Jimmy Choi:
So ultimately, nobody wanted to give me that diagnosis until I went to see a movement disorder specialist and she saw me for five minutes and she goes, "Jimmy, you've got Parkinson's." And I'm like, "That's it. You saw me for a few minutes and that's your conclusion." She goes, "Yeah, this is what I do. This is what I do for a living, is I see people with Parkinson's." I've done what is called a UPDRS test with her, and these are various movements with the fingers and balance and your legs and your arms. And then they give you a score based on how they see you move and if your score is high enough then you have higher likely chance of having some type of movement disorder. And then she finally said, "Look, here's some medication. Take it. If you feel better, you've got Parkinson's. If you don't, well you keep digging."
And that's kind of how the diagnosis went and that was about eight to 10 months of seeing different specialties. But young onset Parkinson's really isn't any different than Parkinson's at the age of 60. Only difference is I was diagnosed before the age of 50 and that's what classified me as young onset.

Dr. Correa:
And what changed for you when you started to take the medicine?

Jimmy Choi:
Immediately the little twitches and tremors went away and then just my muscles loosened up. The feeling was almost freeing. Instead of feeling like I'm fighting my arms and legs to move, it just felt so much easier and more fluid to move. And this was probably three or four days after I started taking medication. But then I didn't want to continue taking medications because first of all, it gave me horrendous nausea. She said, "Keep going and give it a chance to work." And then I didn't want to keep taking the medication so I stopped and then everything came back and that's when I knew that she was right. And I didn't want to take medication at that time, at that age, and I didn't really understand Parkinson's. I thought it was a death sentence to be honest. So I didn't even tell my wife. I didn't know how to tell her. So I kept it from her for another three months before I even told her.

Dr. Correa:
Sounds like taking the medicine, you had a new liberty and freedom of movement, but now that brought on all kinds of other things for you to deal with. The sense of now knowing the diagnosis.

Jimmy Choi:
I didn't handle it very well. I went into denial immediately. My wife calls it these are the dark years. The next eight years, what I went through and what I put her through. And then after sitting down with my doctor for a couple more sessions, she told me that, "Look, it's not a death sentence, you're not going to die from it. It's just a matter of do you want to manage your life." She told me that by the time I was 45 years old, I would probably in a wheelchair. Basically she was telling me to get my affairs in order and make sure my family is taken care of. So for the next eight years I really just worked and worked and worked. I tried to make as much money as I possibly can so that my family doesn't have to worry about my care in the future.
But ultimately, that added stress that I've brought into my own situation, I think it accelerated the progression. We know today that stress is probably the number one enemy for people with Parkinson's. It elevates all the symptoms in the moment of stress because of all that stress and because I was progressing to the point where I was really starting to lose control of my own body and that led to frustration. The frustration led to anger and that led to depression. And so for that eight years I did the bare minimum in terms of learning about the disease and I did the bare minimum in terms of self-care and also care from a patient perspective; making it as easy as I can for my family and I didn't do that. My daughter was two years old and I would just scream at her for no reason.
The final moment, so to speak, the rock bottom moment came and you mentioned it was with my son. We were walking down the stairs and I neglected the disease so much where I was walking with a cane. I couldn't walk without a cane. I weighed 240 pounds because I was so inactive. But the two of us were on top of the stairs and I was carrying him and I was going to go down the stairs. I've got the railing on one side, so I figured I didn't need my cane. But the two of us went tumbling down the entire flight of stairs, 10 steps. That was my rock bottom moment. I knew at that moment that I had to make a change. When I hit the bottom I looked up and I saw my wife and I saw my daughter. They witnessed the fall and the look on their face was just horror and I didn't enjoy seeing that.

Dr. Correa:
Thank you for sharing that. Those dark years as you mentioned, and depression and anxiety and many mental health impacts are such essential aspects about living with various neurologic conditions, but especially Parkinson's and other neurodegenerative conditions. So what were you able to do to change your mindset and your approach to living with Parkinson's?

Jimmy Choi:
At first, I didn't know what I was going to do. I knew I certainly didn't have the funds to fund a cure. So I'm like, "What else can I do?" So I did the next best thing. I figured, "You know what, I can sign up for clinical trials." Because I can't find a cure and can't fund a cure, at least I can participate and I can be the human guinea pig that researchers used to find a cure. But again, it was very selfish because if I happened to stumble upon a clinical trial that was going to be the cure, I'd be the first to get it. And then just to give you a look into my mind as to what I was thinking, because I would sign up for anything. I didn't care what they were asking me to do. I signed up for it and to see if they would take me.
Not everyone accepted me of course, but whoever would take me, I would go. Something started happening, which was finally learning this thing called Parkinson's. I'm finally being educated on the disease itself and this is eight years after I was initially diagnosed. That's kind of the first step to change and that led to the education. And then of course education later led to action. And then I participated in this one clinical trial, was forced physical activity. And it was after those sessions where a physical therapist would manipulate my body, forcing me to exercise. I noticed that after these sessions I felt better. I started thinking, "You know what? Everything that I'm being told is that I have a movement disorder and I need to keep moving, so maybe I should just keep moving." So I started doing walks with my family on our own and remember I still walked with a cane.
So when I felt more comfortable, I would leave the cane at home and see how far I can get. And every day I just try to do a little bit more. And I noticed that, "Hey, I'm feeling better." And of course I changed the way that I ate. So the weight started to come off and the more active I got, the weight started to come off even more. Next thing you know, I was walking around the block and next thing you know I was jogging and I just kept pushing it. Once after jogging is running, by 2012 I ran my first 5K ever in my lifetime. I was feeling so much better from where I was, even just a few months before all the running that I was doing. I just kept pushing the envelope. And over the next 10 years up until today, every time I hit a goal, I kept pushing it.
So 5k went to 10k, 10k went to half a marathon, half marathon went to a marathon. And I did all that in the first year. So fast forward to today, as you mentioned, 16 marathons, 105 half marathons, ultra-marathons, triathlons and all that good stuff. And I truly feel that it was the intense physical activity that I was putting myself in that has allowed me to be in the situation I am today. I'm 47 years old and remember my first doctor told me I was going to be in a wheelchair by the time I was 45. And when I was 45 I was competing on American Ninja Warrior. That's the far cry from being in a wheelchair.

Dr. Correa:
That is definitely. You stuck that one. So going back to some of those dark years and the mental health impacts, what kind of changes did you notice as you were increasing this physical activity and the intensity of the physical activity that you were doing on your mental health and your relationship with Mason and Karina?

Jimmy Choi:
Personally, for my mental health, just going outside and running or biking, it helps me clear my head. Every day I've got more things to worry about, whether it's family or work or Parkinson's itself. Running just gave me time to step back and just let everything, it's kind of like a zen moment. It helped with resetting my day so that really helped. Being more active after losing weight and becoming more mobile, it allowed me to play with my kids more. It allowed me to spend more time with my family. It allowed me to do things that a "normal" person would do with their families. And I think that's a huge boost to my personal morale, my mental state of mine. And of course my kids, because they were young and they needed a dad to teach them how to ride a bike, they needed a dad to run around and chase them and play with them.
But at the same time, I think they learned at a very young age that every day is going to be different cause Parkinson's is different day by day. Today is a good day, for example, who knows about tomorrow. They would learn things that my wife would tell them or I would tell them that, "Hey, Daddy can't do this right now because he's tired. He is having an off day." Those are the things that I learned along the way. But at the same time, because of my physical activity, I think it gave me back a lot of abilities and then it gave me back more time to spend with them. And I think that in itself helped with my mental state tremendously.

Dr. Correa:
Incredibly positive and great lessons we could all take and despite of what we're living with. In terms of misconceptions about Parkinson's, this has been a big part of some of your advocacy work and awareness work. What are some of the most challenging misconceptions with Parkinson's that you encounter each day?

Jimmy Choi:
Well, I think the biggest challenge is that people think Parkinson's is just tremors. Because everybody I talk to the minute I say Parkinson's, they immediately look down at my hands and they think it's just tremors and, "Oh, how bad can it be?" People don't realize that 30% of people with Parkinson's will never have tremors. Nobody knows about the cognitive issues that comes along with Parkinson. And many of my fellow fighters deal with vocal cord issues, difficulty swallowing food. Loss of smell. I lost my sense of smell years ago. When you talk about movement, it isn't just your hands or your feet. It is anything that moves in your body. Anything that... Your tongue is a muscle. Your bowel movement is a movement. Your heart is a muscle. So these are all things that gets affected by Parkinson's. Nobody seems to ever put their one to one connection there.
And so they think, "Oh, it's no big deal, it's just tremors." That's the biggest battle that I've had to deal with. I've come in situations where I get on an airplane and sometimes I get stuck in the middle seat. So my tremors and then if I'm on medication, the side effect of medication is dyskinesia, which is a rhythmic movement that's very hard to control. So I would move in the middle seat, of course bothering the person next to me. And many times people next to me will ask, "Sir, can you please stop moving?" And then as soon as I explain my situation, 95% of the time they're like, "Oh, I'm sorry." And they would feel terrible even saying anything. And then I always use that opportunity to provide some Parkinson's knowledge. But then every once in a while you'll get that one person that actually asked the flight attendant to move him because he thought it was contagious.
When it comes to misconceptions, I think the general public knows very, very little about Parkinson's and I attribute that to because Parkinson's doesn't kill you. So everybody's focused on something else that, I guess, has a higher sense of urgency like cancer or heart attacks. Not that those aren't important, but when you think about it, if you had to choose between living 30 or 40 years with slowly losing control of your own body. Think about that, 30 to 40 years or even longer that you have to live with that. Are you mentally strong enough to handle that? And unfortunately, from what I've seen and I think for most people, the answer is no. You're not ready to do that.

Dr. Correa:
It's such a difficult situation and I think most people don't realize. You have difficulty with the idea of waking up one day and not being able to do one thing, but little by little having changes and the fluctuation of your function over time.

Jimmy Choi:
People look at my Instagram or look at me on TikTok and see things that I do on American Ninja Warrior, they're looking at a small slice of my day. They don't see the struggle that led up to it. They don't see the struggle that comes afterwards. American Ninja Warrior has been great. Every time I competed, they always give me enough heads up to say, "Hey, do you need to take your medicine? Are you on? Do you need more time?" And one time I actually had to tell them I'm not ready. And they actually shuffled the order in which we compete based on that because my body just wasn't ready. People don't see that side of it. And I did make a video about, so you mentioned one of the world records. So this was during the pandemic. So in August 2020, I broke the world record for a number of chest-to-ground burpees in one minute.
And I recorded myself and I shared this video on Instagram and on TikTok, where what I looked like in the morning when I woke up, the state that my body was in. And then how I have to time the medication that I take so that I can have that window of opportunity to perform at my best for that day. And then if I miss that window, then I may not be able to have broken that record. So I have about four hours of good movement before I need to just really sit down and just rest and really not be able to move for quite a while. So in 24 hours a day, let's just say I spend only four to five hours sleeping because that's another symptom with Parkinson's people don't know about is insomnia. And then the rest of the day I'm struggling to move. So I've got four hours of good movement.

Dr. Correa:
You've been doing a lot of work both for awareness and fundraising with the Parkinson's community and advocacy organizations, but how has being part of these organizations helped you and helped you manage and adapt to the condition?

Jimmy Choi:
It was really the first time I had to open up my story to tell people and say, "Hey, I'm doing this. I'm running a marathon and I'm raising money because I have Parkinson's. You may not know that. And this is what Parkinson's has done to me in the last X amount of years and this is what I'm doing in terms of exercise that's helping. And that's why this marathon is important to me." Because of my fundraising efforts, I started meeting people in the Parkinson's community that I can learn from. They've lived with this disease for many more years than I have and they've done running with Parkinson's, they've done fundraising. So these are people I can reach out to and I've found people who are more like me. So from that moment on, I realized how important community is, how important having really good support system around you is.
And I've only grown that ever since and today that system just goes out and I would say into the thousands of people. It's a two-way street for me. And without that community, I don't think I'd be able to push for as long as I have.

Dr. Correa:
It's great to hear that. Thanks for being an inspiration, putting one foot in front of the other and running towards the future and for hope for both you and your family. So, Jimmy what's coming up for you?

Jimmy Choi:
As far as competitive and really high pressure and really high impact training, I think that's pretty much behind me. But I will continue to find new ways to move. I will continue to find new challenges for myself so that I can stay active and my main goal now is to continue my advocacy work, continue raising money for research, continue with my TikTok account. TikTok is for younger generation in general. So my goal is to remove a lot of that stigma or a lot of that misconceptions about Parkinson's, especially to the younger generation because they are the future. So I'm going to continue that work moving forward and I'm just going to have as much fun as I can doing it the same time.

Dr. Correa:
Thank you so much. We'll link to Jimmy Choi's social media accounts in our show notes. Jimmy, thank you so much for joining us today and taking the time with us here on the Brain & Life podcast.

Jimmy Choi:
Thank you. Thank you very much for giving me the opportunity and I really appreciate it.

Dr. Correa:
Can't get enough of the Brain & Life podcast? Keep the conversation going on social media, when you follow @BrainandLifeMag or visit brain&life.org. As your host, we would also like to hear from you on Twitter @neurodrcorrea and @audreynathMDPhD.
Welcome back to the Brain & Life podcast. Now continuing our discussion about living with Parkinson's disease and movement disorders. Today I'm joined with Dr. Allan Wu. He's a neurologist in Chicago at the Parkinson's Disease and Movement Disorder Center at Northwestern University. And when he is not caring for people living with movement disorders and supporting their family members, he works in research on various types of noninvasive brain stimulation for movement disorders. We just heard from Jimmy Choi on how he and his family have managed and lived with Parkinson's disease and his dyskinesias, all while fundraising for the condition through charity running and cycling and competing multiple times on Ninja Warrior. Welcome Dr. Wu and thank you for joining us.

Dr. Wu:
Thank you so much Daniel. Really, really privileged to be here. Thanks for that introduction and sharing this amazing story with me.

Dr. Correa:
For those who did not catch our first episode on Parkinson's with NBA veteran Brian Grant and Dr. Parashos what is Parkinson's disease?

Dr. Wu:
Parkinson's disease is a neurodegenerative condition. It is one that affects movement. It is characterized by slow movement. There is often, but you don't have to have tremor. It can affect the gait and the posture. It can have some rigidity to it, but that does not really capture what Parkinson's disease is for an individual. It varies a lot with what the initial symptom is and really does benefit from having a neurologist confirm a diagnosis. But those are the core symptoms of tremor and slowness and balance problems in varying degrees. It is caused by a brain condition where typically the cells that make dopamine, this was mentioned in your previous podcast, that when there's not enough dopamine that seems to affect movement. But again, even that is a bit over simplistic. It is a pretty complex disorder when you get right down to it.

Dr. Correa:
Like Brian Grant, Jimmy Choi shared with us the impact of his early onset Parkinson's disease diagnosis. But other than timing of onset, are there other real differences between early onset and the other types of Parkinson's disease?

Dr. Wu:
Well that's one of the big challenges of Parkinson's disease. No two people are alike with the condition and we do call out that there is up to 10% of people have Parkinson's disease start under the age of 40 and the risk of Parkinson's goes up considerably after the age of 60 and we carve out the early onset one under 40 and they have different characteristics. They kind of tend to progress a little more slowly. They might have a little more propensity for some of the dyskinesias that you've heard about. And in the end it's all a spectrum and there are different forms of Parkinson's and it's hard to predict what any one person, how they will do. And again, a good reason to sort of engage with the community of people with Parkinson's, engage with your neurologist and really understand what Parkinson's is presenting, what it means for each individual person.

Dr. Correa:
So Jimmy also shared with us and has talked about his dyskinesias. What are really dyskinesias and is this something that every person with Parkinson's disease might have to deal with at some point?

Dr. Wu:
Dyskinesias are abnormal involuntary movements that are considered too much movement. We think of Parkinson's disease at its core of being a disorder of slowness. So people have some loss of dexterity and slowness of movement, a shuffling gait, and we have effective medications for treating those symptoms and they help improve speed of movement, fluidity of movement and for some people the brain starts to overreact to those treatments and the medications start causing too much movement. The dyskinesias are probably your brain plasticity responding to both the fact that your brain has Parkinson's disease and it's been getting these medications for an extended period of time. Not everybody gets them, not everybody is even affected by them. Some people would rather have the dyskinesias because it goes along with the ability to move more smoothly. So again, it's a very custom individual problem that you can discuss with your neurologist about.

Dr. Correa:
We know we've been talking about some of the different movement symptoms and you brought up tremor. Now many people might experience a tremor at different points for different reasons. What are some ways to know the likelihood of when a tremor or stiffness in the muscles is probably something normal or something else and not Parkinson's?

Dr. Wu:
If you think about what I said at the beginning, that Parkinson's is characterized by some tremor and some slowness and some stiffness and balance problems, all of those are very non-specific and many people will have these at some point in their lives and it can be very challenging. Tremor in particular is best assessed by a neurologist with some experience or a physician. The characteristic of Parkinson's tremor is what's called a rest tremor. And what that means is it's a tremor that occurs when you are not paying attention to the body part or the limb or the hand. The more common type of tremor, which is not as associated with Parkinson's disease, is a tremor when you are doing an action. When you are trying to write, when you are trying to reach for something, those tend not to be Parkinson's. The distinction can be surprisingly subtle and experienced physician is probably best to distinguish them. However, any type of tremor is probably worth paying attention to and getting it looked at if it concerns you.

Dr. Correa:
So we focus on a variety of different motor or movement symptoms in Parkinson's disease. What are some of the non-motor or movement symptoms of people living with PD experience?

Dr. Wu:
There has always been an appreciation and it's increasing now that Parkinson's disease is not just about the movement problems but it's a multisystem condition with these non-motor symptoms. Some of them include some memory problems, some anxiety, constipation very common, loss of smell.

Dr. Correa:
We've mentioned many different symptoms that can come with Parkinson's and there are also a long list of treatment medications and each of them have some side effects. So can you describe for our listeners some of the variety of these medications and how you discuss them with your patients?

Dr. Wu:
The main medication that we have for Parkinson's is the dopamine replacement therapies. Those are characterized by levodopa. It's a dopamine replacement. Sinemet is the brand name in the United States. There are several forms of it. It remains probably the most prototypical and effective medication for the movement, motor symptoms of Parkinson's. It does not treat everything as you noted. And for the other symptoms, for example, constipation doesn't always respond very well to dopamine replacement. It's because Parkinson's is a complex condition and affects different systems and there are common remedies, many of them are listed in the Brain & Life articles about handling non-motor symptoms and sometimes we will refer them to a GI specialist, gastroenterologist, for some assistance. And in general we will have people with other symptoms. For example, anxiety and depression, which are common in Parkinson's, are becoming an issue that is more than the neurologist can handle. We will seek the help of psychiatrist or a psychologist.
So finding the right care team to take care of multiple symptoms that can occur with Parkinson's disease is just as important as having a neurologist to quarterback the core elements of Parkinson's disease. And to stay in touch with your care team and primary care doctor, prioritize what symptoms are there, make sure that they're not caused by something other than Parkinson's disease. Not everything that a Parkinson's disease person experiences is due to Parkinson's and many of them are. And so working with your care team is important to not only identify which ones are associated, which ones are treated and so on.

Dr. Correa:
And you mentioned then they're almost kind of like a whole collection of doctors and many people have multiple different doctors for various conditions, particularly because Parkinson's is one of those that has so many different components. How do you suggest to your patients and their families organizing all the different doctors in this team that they have caring for them?

Dr. Wu:
I think that's incredibly important in this current environment where people do have appropriately a choice, often of what doctor they go to or that we have so many specialists available a lot of the time. That people do accumulate a number of different specialists. There are two things that I always tell patients. You want a captain of your ship, you want a trusted person to go to help coordinate your care. That concept is called a medical home and it's typically the primary care doctor. Now when a person has Parkinson's disease, typically the neurologist becomes a primary point of contact for Parkinson's disease. In some cases, particularly if the Parkinson's disease is more complicated or more advanced, sometimes the neurologist will take on that role and I will encourage patients to make sure that they understand who is their captain of the ship at any time.
In addition to that, the second point is that there should always be one captain of the ship for the Parkinson's. So that means what I call the first call neurologist, so that when a patient has Parkinson's disease and I am taking care of them, I typically am the first call neurologist for that condition. And I think patients are relieved to hear that because if they have a symptom they're not sure what it is or if they have, heaven forbid, a stroke that they have a neurologist to call, whether or not it's within Parkinson's or my specialty, we can advise them. So between a medical home, primary care and a primary neurologist, there should always be a first-call person for the patient to rely on.

Dr. Correa:
I like the idea of really kind of having a frank discussion with your doctors and getting clarity on who sort of that first-call person is. Maybe I would think of them more as a navigator or a co-captain because I think many people living with various medical conditions and their families probably would think of themselves as the captain.

Dr. Wu:
That's a really fantastic point.

Dr. Correa:
In our discussion with Jimmy through his advocacy work, some of the promotion about and public awareness that he's done on social media. He has shared many frustrations with the stigma of movement disorders and Parkinson's in the community. Now speaking to our listeners and the wider society, what do people need to understand about tremors and movements and many of the other symptoms that can often lead to snickers and discrimination?

Dr. Wu:
That's a really great point and a challenge at large for all of us who are taking care of patients with neurological conditions. A lot of it does come down to education of the public about education of our patients, their caregivers, our colleagues. About understanding that patients who have Parkinson's disease, who have tremor, who have had suffered from a stroke, have epilepsy, who have lived with cerebral palsy all their life. These are part of the condition that they have and it does not limit in the vast majority of cases, the ability to contribute to society, to enrich the lives around them and really live a fulfilling life for themselves and others. And we as healthcare professionals really should strive to be supportive. In addition to that education, promote ways to be non-judgemental in society for patients affected by neurologic conditions and really try to support them in their lives.

Dr. Correa:
Whether it's bringing more public awareness to the condition or supporting the community, whether it's running a charity race or on Ninja Warrior. Jimmy has modeled for us many examples of the resilience and potential for some people living with movement disorders. He did bring up that it's only possible because he listens to his body and uses his medications to maximize what he calls on-time. Can you explain this concept for us?

Dr. Wu:
Yes. Parkinson's disease symptoms, particularly the movement ones, respond to levodopa, the medication, and they help relieve the slowness, relieve the tremor, allow movements to be more smooth. For some patients, the medication wears off and then when the medication wears off after several hours, the symptoms of Parkinson's return. You are slow again, you're shuffling, your tremor returns, movements are more challenging. That is considered an off-time, the core Parkinson's slowness symptoms. When you take the levodopa medication or medications like it, when the medicine and the term is kicked in, the medication kicks in, then the patient feels hopefully nearly normal and able to accomplish the movements needed. So that characterized what is on-time and it's pretty clear that off-time and on-time are pretty meaningful for the patient, that they can tell when they're on or off. It's important to know that even when you're off some circumstances, when you're very motivated, you can overcome some of that. So these terms are pretty clearly defined, but they can have some challenges for individuals too.

Dr. Correa:
So what are some of the mobility challenges that people living with Parkinson's learn to adapt with?

Dr. Wu:
Parkinson's disease is fundamentally a disorder that shrinks the perspective of the body's movement control. So movements tend to be smaller than they think they're doing. The steps become smaller, so any type of exercise, engagement in movement that resets that and keeps the body moving and also exercise of the brain is helpful. Doing Tai chi is a really good example, so is dance, so is boxing. Improvisation is another one. What is really interesting to observe about these is they are all techniques to engage the muscles in movement and at the same time is engaging the brain in planning the movements. It's not simple aerobics, which are still important. Running, jogging, walking are all also important. It just seems that there is a lot of benefit for patients with Parkinson's to be engaging brain and body movements at the same time.

Dr. Correa:
Dr. Wu, thank you so much for taking the time to speak with us and to speak with our listeners about some of your work and about Parkinson's disease. I really appreciate you taking the time and being here with us.

Dr. Wu:
Thank you for inviting me. This is just a fantastic endeavor that you are doing.

Dr. Correa:
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