Life

When You Get a Devastating Diagnosis at 27

There are options for a man who doesn’t know how to move forward. American Ninja Warrior is one.

Jimmy Choi in workout gear, looking determined.
Jimmy Choi on American Ninja Warrior.
NBC

Jimmy Choi is a contestant on American Ninja Warrior, a marathon and ultramarathon runner, a father of two, and for 17 years he’s been living with Parkinson’s disease. On a recent episode of Man Up, Choi joined Aymann Ismail to help Vivek, a fellow dad with Parkinson’s, figure out how to get his “mojo” back and feel like the man he wants to be. This transcript has been edited and condensed for clarity.

Aymann Ismail: How has living with Parkinson’s changed your ideas of how to perform manhood?

Vivek: I looked at myself originally as the strongest, most promising male in the family—to being immediately like an aging father. I’m kind of watching the world go by in fast forward. But what it means is not doing stuff myself. I spend more time at home. I have hired somebody to help me run the company. And the stuff I’m doing at home, that I think my wife appreciates more, is not the exciting stuff, not the “let’s build this and let me go and clear some brush” kind of stuff, but some of the more humdrum things. I spend more time trying to do the things that I don’t do as efficiently, like cleaning up or helping organize or helping the kids with their homework or taking them away somewhere, just making dinner sometimes. These things take longer now for me, but I’ve devoted the time to make up for that. It doesn’t feel the same, but I’m trying to have it be rewarding nonetheless.

Aymann: What do you think will help you cope with being diagnosed with Parkinson’s? Are you looking to get your mojo back?

Vivek: If you have a way to help me do that, man, I’d be eternally grateful. How do I recognize the future without resigning myself to it? Because it’s a really scary balance. How do I remain relevant to my co-workers and my friends and my wife and my family? How do I live in this world given I’m a 45-year-old with Parkinson’s? It’s not normal. I’m still struggling with that—who am I now in this world? I’m forced to deal with this continuing change.

Aymann: Jimmy, could you relate to what Vivek is saying?

Jimmy Choi: Oh, word for word. You know, I’ve been there. I’ve been diagnosed now since 2003. Seventeen years I’ve been living with this disease. Every word that he’s mentioned is something that I’ve gone through either at one point in my life or I am still going through today. So I can relate to you 100 percent.

Aymann: Could you describe what your life was like when you were at peak mojo?

Jimmy : You know what? I’m going to be very honest with you and tell you I’m at peak mojo right now. People look at me and think, You’re crazy. But let’s look at this from all facets. I am financially independent. I am more fit now than I ever was. I was a three-sport kid in high school. I was the captain of the football team. But I am more fit now than I was back in high school. My friends and family, my inner circle, has never been closer to me—my community that I have built around myself. And this is important because you need to start building a community around you. Surround yourself with other people who are like-minded. Right now actually, sitting in my house, I’ve got three other people with Parkinson’s in their 40s and early 50s who are downstairs in my basement swinging around on ninja obstacles. And they all have lived with this disease for, I think, an average of six to 12 years. So you surround yourself with people just like you—that way you can share experiences, you can share things that work.

Aymann: I want to understand how that happened. Is it just time, or is there some kind of journey that you went on, something that triggered this revolution in your mindset?

Jimmy: It really is about the journey. When I was diagnosed in 2003, I was 27 years old, and that first eight years of my life with Parkinson’s, I did absolutely nothing to educate myself on the disease. I knew Michael J. Fox had it. I took 16 pills a day, and I figured if I ignored it, it would just go away. And of course, it doesn’t go away. But then I hit rock bottom: I fell down the stairs carrying my infant son at the time. This was in 2010. My son was just a little less than 1 year old, and we fell down the stairs, and my wife and my daughter witnessed it. When I looked up and saw their faces, it was just one of horror.

I knew then something had to change. I was 240 pounds. I was really overweight. I walked with a cane because I couldn’t keep my balance. I was just in my mid-30s. This is not the life that I had envisioned for myself and my wife when we got married. But one thing that I realize now is that the more I shared my story, not with the general public, but with the people who I considered my inner circle, my immediate family, my closest friends, the people that work for me—the more I shared my story with them, the more they know about the disease and the more they know about how I live with Parkinson’s, that can help them better understand whether it’s you talking or the Parkinson’s talking.

Vivek: That’s where I have so much trouble. These people who I care about the most, who care about me the most, who can get hurt by watching me go through some of these things—how do you do it in a way that people see what’s going on, but it’s not depressing them and it’s not resulting in pity? Because I don’t want pity, and I don’t want people to be depressed.

Jimmy: I share everything, everything that I’m feeling. If I’m not feeling well, I will tell my kids, “Hey, you know what? I don’t want to play right now. Daddy can’t play right now because I just simply can’t.” And they understand that.

This scene probably is very familiar with you, [from] gatherings at parties: I call it the Parkinson’s elephant in the room, where somebody comes up to you—it could be your best friend, it could be your brother or sister—and says, “Hey, how’s it going?” And you really don’t know what to say. So you say, “Yeah, I’m good, I’m fine.” And then you just kind of stare at each other nodding, and you walk your separate ways, and you avoid each other. You avoid that topic. But what if we change that conversation a little bit, and always try to describe things to them in everyday terms?

Like dystonia. “Have you ever had a feeling of a Charlie horse?” “Yeah.” “You know that feeling? Now imagine having that for four hours.” There’s more of a shock and awe. “Holy crap, four hours of Charlie horses. That’s terrible.” But at the same time I tell them, “But I’m not experiencing that right now.” And then I’ll also let them know how I deal with it when it happens. “Hey, you know, if you ever see me move very slowly, that’s indication that dystonia is onset.” So you’re giving them little tidbits of information that they may not use right away, but the next time they see you and you’re moving a little bit slowly, they’re like, “Oh, that must be that dystonia thing that he’s talking about. Then let’s walk slower with him today as we talk and walk.” On other days where you’re moving better, then they can just be themselves with you. If they can identify what you’re going through, then that awkwardness melts away.

It slowly diminishes over time because they understand what you’re going through from a symptom, visual perspective. And it’s about making little changes that add up. You talked about having these little things around your life that became a burden to your friends and your family, especially your wife. Now you can start making small changes that add up to remove the burden in other ways. I still can’t tie my shoes, I’ll be honest. My shoes are untied right now as I’m looking down, but other things that I can do and you already mentioned—like spending more time with the kids, being there in person with them, and being yourself in front of them—really takes a lot of that physical burden away.

Aymann: Vivek was having a hard time dealing with the ways that an illness like Parkinson’s could make him dependent on other people. Do you have advice to make him more comfortable with asking for help?

Jimmy: Yeah. My best advice for asking for help is to ask for help.

Vivek: I saw that coming for some reason.

To hear the entire episode, subscribe to Man Up on Apple Podcasts, Stitcher, Spotify, or wherever you get your podcasts. Look for the episode “Being an American Ninja Warrior With Parkinson’s.”