Living With Parkinson’s Disease: Former Ultramarathoner Has New Platform to Inspire Others
Key takeaways:
Jimmy Choi understands what it means to overcome adversity.
He was diagnosed with Parkinson’s at age 27 when he started to experience tremors and issues with balance and movement.
Exercise has helped him get stronger and find a supportive community.
Ultramarathoner. Five-time American Ninja Warrior competitor. Two-time world record holder. These are just a few of the titles that Jimmy Choi, a 47-year-old father from Bolingbrook, Illinois, has earned. While he’s proud of these accomplishments, what he’s most proud of is the fact that he’s been able to do this all with Parkinson’s disease.
Parkinson’s disease is a neurological condition that affects nearly 1 million people in the U.S., and around 50% more men than women. It is a progressive condition — meaning it worsens slowly over time — and it leads to problems with walking, balance, coordination, and movement. It frequently causes uncontrollable tremors or shaking.
Jimmy was first diagnosed with Parkinson’s when he was 27. He had recently been married, and he felt as if his life was just beginning. At first, his symptoms didn’t seem concerning. He would find that he was often stiff, despite being active. He also had twitches often but thought it was from work-related stress.
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It wasn’t until he decided to buy life insurance that Jimmy realized that his symptoms were more serious than he’d thought. During his physical exam, his healthcare provider started asking Jimmy questions about his movement, pointing out the fact that his arms didn’t swing when he walked.
Then, she explained that her full-time job was at a neurologist’s office, and she saw symptoms like his every day. She didn’t give him a diagnosis at the time, but insisted he speak to his doctor. Jimmy spent several months seeing specialists and getting no answers. Finally, he was referred to a movement disorder specialist who took one look and told him he had Parkinson’s.
Trying to hide his early onset Parkinson’s
Jimmy was shocked. Not only because it was so unexpected, but also — like many — he thought Parkinson’s was a disease that only affected older people. Many people don’t realize that Parkinson’s disease affects about 10% to 20% of people before age 50.
His first reaction was to swear at the specialist and not believe the diagnosis, he says. She was understanding and gave him a medication called Mirapex. Then, she told Jimmy that if it made him feel better, it meant they were headed in the right direction.
Jimmy did feel immediate relief from the medication, but he says he was still in denial. So, he stopped taking the medication and hid his diagnosis from everyone — even his wife. But when his symptoms returned, he decided to continue taking it and open up to his wife. He says he was convinced as long as he took the medication for the rest of his life, it would be fine.
A fall becomes a wake-up call
His symptoms slowly progressed over the next 8 years. Because his wife saw him every day, she didn’t notice the gradual decline. But other family members would point out things to Jimmy about the way he moved, which he always brushed off.
His family life got harder as he became less mobile. He says he had to confront the fact that his disease was progressing, which led to depression. He gained weight and had to use a cane because he kept falling over.
His rock-bottom moment came as he was carrying his 10-month-old son down the stairs and fell down the entire flight. His son wasn’t hurt. But seeing his wife’s and daughters’ shocked faces was a wake-up call.
The first thing Jimmy did was educate himself. Up until then, he thought about his disease as just a part of life and never learned more about it. The hardest part for Jimmy to accept was that there was no cure.
But he was stubborn. He signed up for different types of trials and thought if they did find a cure, he could be the first person to get it. On the other hand, because he was depressed, he also thought, If something bad happened and I were to leave this planet, that wouldn’t be such a bad thing.
Pushing himself to be stronger
One of the trials involved forced exercise, which meant Jimmy had to use indoor cycling machines. Jimmy noticed that he often felt better after these sessions. That’s when he started incorporating exercise more into his daily life.
At first, he started walking to his mailbox and back without his cane, going a little farther each day. As he gained confidence, he began eating healthier. He lost weight and was able to walk around the block, and then two or three blocks. Eventually, he began jogging and noticed that not only were his Parkinson’s symptoms improving, but also his overall health.
In 2012, he ran his first mile. Later that same year, he ran his first 5K fundraiser, in honor of Parkinson’s Awareness Month. That September, Jimmy decided he was going to run the Chicago half-marathon. But because the race was a month away, there wasn’t any space. Someone told him to check if there were any charity bibs left, which was when Jimmy discovered The Michael J. Fox Foundation. When he asked about a charity bib, they had one left. Jimmy took it and promised to raise $2,000.
“Looking back, I always say that I felt that that bib was always there,” he says. “It was meant for me. It kick-started something that has brought me to where I am now.”
Finding a community that could relate
Jimmy realized that he needed a community for support. Through fundraising, he was able to connect with a running community and find people he could relate to. He also started to tell his friends and family about his disease, after years of avoiding the topic.
He wound up raising more than $5,000. The night before the marathon, while sitting at dinner with his team, he realized that he had done more in 1 month than in the last 8 years. It became his mission.
He started cycling and became the first person with Parkinson's to complete a 100-mile bike ride in under 5 hours. He’s ran 16 marathons, more than 100 half-marathons, and an ultramarathon. He and his wife now host their own Parkinson’s 5K, and have raised almost $700,000 for Parkinson’s research. Jimmy’s next challenge came when his 9-year-old daughter started watching American Ninja Warrior, a reality show featuring competitors who challenge themselves with agility-based obstacle courses. Jimmy’s daughter kept telling him to try out. Jimmy gave her excuses, saying his Parkinson’s wouldn’t let him, and that he had no upper body strength.
One night, she turned to Jimmy and said, “Dad, I don't see what your excuse is.” Jimmy agreed to audition, if only to get her to stop asking. As a long-time fan, she was able to show him the ropes and helped him make an audition tape.
In 2017, American Ninja Warrior decided to give him a chance.
While he trained, he found he had to do things his own way because of his disease. Jimmy went on to compete on the show for five seasons. He says being on the show gave him a platform to share his experiences so that others living with adversity could learn from him.
Last year was his final year, when he realized he was the oldest contestant on the show. But his daughter was able to compete, so he says he feels like he handed the torch on to her.
Setting new records
A lot of this exercise helps him every day, like learning one-handed push-ups. This turned out to be vital, because sometimes he would fall into tight spaces — like between his sink and his toilet — and needed to be able to push himself up. Jimmy went on to break the world record for most burpees in a minute and then the most lateral jumping push-ups in a minute. This year, he’s headed to Italy to break another push-up world record.
Jimmy is now a retired chief technology officer who works as an advocate for Parkinson’s research. And he’s also a motivational speaker. He sits on the boards of The Michael J. Fox Foundation and Rock Steady Boxing, a nonprofit designed for people with Parkinson's.
He has a strong social media presence on Instagram and hopes sharing his story will speak to anyone who is struggling with adversity. He also doesn’t want people to think having Parkinson’s isn’t hard because he’s doing so well physically.
He also wishes that people who don’t have Parkinson’s would be a little more understanding. When he’s out in public, he still has difficult moments. He recalls a time when he tried to put his card into an ATM and his tremors kept making him drop it.
“People stare and you can feel that. The people staring and stress [are] the No. 1 enem[ies] for Parkinson’s,” he says. “So when you feel that stress and anxiety and people staring, it gets worse, and that makes the task even harder.”
He wants people to remember that if they see someone struggling, there is a reason and the best thing they can do is offer to help.
“It's a lot of hard work. My full-time job is no longer in corporate America,” he says. “My full-time job is keeping this body running. And it is a full-time job. It is a lifestyle change.”
He still has bad days where he can’t move. For newly diagnosed people, he urges them to find a community of like-minded people.
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