From early onset Parkinson’s to American Ninja Warrior
Community program to feature a fighter — in every sense of the word
When Marshall McCluhan said that the medium is the message in the late 1970s, he had no idea how aptly that would describe an upcoming event at Englewood Hospital and Medical Center.
On June 19, American Ninja Warrior Jimmy Choi, who is 43, will deliver a powerful message about his athletic achievements. Even more powerful, however, is Jimmy himself. He was diagnosed with Parkinson’s Disease when he was 27.
The program — sponsored by the Jewish Home Family, EHMC, and the Kaplen JCC on the Palisades — will offer both information and inspiration to people with Parkinson’s and their families, said Carol Silver Elliott, the Jewish Home Family’s president and CEO.
Responding to the increased, and increasing, number of residents with Parkinson’s, JHF — encompassing the Jewish Home at Rockleigh, Jewish Home Assisted Living, Jewish Home @ Home, and the Jewish Home Foundation of North Jersey — has been working to provide a variety of programs for this population.
“While the number of people with Parkinson’s is large anyway, it’s growing all the time,” Ms. Elliott said. “While I’m not an expert, we speculate that people are being diagnosed earlier. It’s a difficult condition to diagnose. It’s called a ‘snowflake disease,’ since each case is different, and symptoms are not the same in every person. Also, since people are living longer, we see more of chronic diseases.”
EHMC neurologist Dr. Rikki Racella agrees that we are seeing more of Parkinson’s as people live longer. “There’s a high risk of getting it when you’re older,” he said. Of course, there can be early onset, he added, citing the case of actor Michael J. Fox, whose much-publicized personal experience has helped increase awareness of the disease.
Dr. Racella said that there are medications that “can help dramatically, especially when you’re young,” but the best way to slow the progression of the disease is “good old exercise.” The medical center, he said, has both neurologists, who treat Parkinson’s medically, and physical therapy that allows people to move.
The importance of early detection of Parkinson’s cannot be overstated. A recent article in Acta Neuropathologica noted that “Earlier detection could enable more effective treatment for the incurable, progressive neurodegenerative disease affecting the speech, posture, gait, digestion, sleep, impulse control, and cognition of an estimated one million Americans and 10 million people worldwide.”
Significantly, the piece also announced the development of a new method for tracking the early stages of the disease, by tracking the early stages of protein aggregation known to be involved in its development. Still, Dr. Racella said, while testing may be available, it is important to see a neurologist or other physician who has your medical history.
“A lot of people think it’s a movement problem, like a tremor,” he said. “But it’s more than that. It can affect different types of movement, as well as the speed of movement. You can have no tremor but be slow in movement. Or your walking might be impaired, or you could be rigid or tight. There are also a lot of non-motor muscle symptoms — constipation, for example, or a drop in blood pressure, dementia, or acting out your dreams during sleep. These can be even more disabling.”
Dr. Racella said the June 19 program is important “because you can always learn more about the disease, which might affect you or a loved one. Education helps.”
The Jewish Home Family has run one large community program devoted to this issue every year. “Last year, we had a smaller internal program with Bret Parker, who did seven marathons on seven continents in seven days,” Ms. Elliott said. “Remarkable.
“As we’ve gotten more involved, we’ve gotten more plugged in to the people out there who are well known in the Parkinson’s community.” That is how they found Jimmy Choi. “We reached out to him, and he’s coming.”
Ms. Elliott estimates that JHF serves a few hundred people with Parkinson’s each year, at Rockleigh, in assisted living, and at the Gallen Day Center. One of its most popular programs is rock steady boxing, introduced several years ago, which serves both residents and people in the community. “We have 100 boxers in various locations who are community people who come for the program,” she said.
In March, JHF opened a second boxing location, at the Kaplen JCC in Tenafly, and its plans to open a third center, on the Rockleigh campus.
Hagit Tal, the JCC’s group exercise director, said the program takes place twice a week and now serves six people, though she expects it to grow significantly. “People are very appreciative,” she said. “They’re happy to hear that it’s here at the JCC.” She receives phone calls about the program; she just talked to someone in the Bronx, asking about it on behalf of her brother. “This would be the closest location for him,” Ms. Tal said, stressing that there’s a need for such services and people have to know where the places that offer these programs are.
Participants in the boxing class are “55 and up,” she said. Most are older. When you’re younger, “you’re not thinking you should do this to keep your tremors from becoming more severe,” Ms. Tal said. “You realize that at a certain age.” Boxing is particularly helpful since using a punching bag provides impact, which helps strengthen joints. But the class also includes floorwork, such as planks and push-ups, to help increase students’ overall fitness level.
The JCC uses levels to categorize people with Parkinson’s,” Ms. Tal continued. “In Levels 1 and 2, they’re still working out and moving. In Levels 3 and 4, their activity level has already deteriorated. Nurses call us, wanting to come and observe what we do so they can do it at home. We cater to both groups as long as [those in the higher levels] can be brought in and have their nurses with them to do workout.”
The JCC definitely should cater to people with special needs, Ms. Tal said. Collaboration with EHMC has allowed the JCC to offer a cardiac program; now, working with the JHF, it also is addressing Parkinson’s. “We’re becoming a triangle,” she said. “We’re all getting involved in all of this.”
The Jewish Home already has created a substantial program for people with Parkinson’s. “We’ve really established a Parkinson’s center, and we have a whole host of programs under that,” Ms. Elliott said. “First, we have a monthly community support group on the Rockleigh campus, which includes about 40 people. Some are from here, some are from the outside, and it also includes care partners who come for 1 l/2 hours to get education and support from one another.
“We also have special programming in the rehabilitation department focused on people with Parkinson’s. The rehabilitation staff is specially trained, and there’s special equipment for anyone who needs a particular therapy.”
program for people diagnosed with Parkinson’s. It is offered in
several locations to a growing number of participants.
Two days a week, the Gallen Day Center offers a specialized Parkinson’s program, open to community members who participate in the center. The center also offers boxing, Pilates, Tai Chi, yoga, “and other special exercises that delay the disease” to residents of all the JHF facilities
“We’ve trained 350 members of our staff about Parkinson’s, what it is, what it isn’t,” Ms. Elliott said. “We’ve added new therapeutic interventions and we’ve brought in experts. In June, we’re bringing together all the boxing coaches to get training from yoga teachers on how to use yoga warm-ups and cool-downs.”
Ms. Elliott said the June 19 program will interest people in the community who come to meet an incredible athlete as well as those concerned with the notion of overcoming adversity. “It’s not just about Parkinson’s but an inspiring story about determination,” she said. “It’s going to be an incredible evening. Not ‘here’s my battle against Parkinson’s,’ but ‘here’s what I had to confront to accomplish this.’”
Of course, she said, it will be especially helpful to people who are newly diagnosed with Parkinson’s or who know someone with the disease. In addition to the speaker, there will be exhibits with information and resources to help people “network and connect. They can sign up for programs and support groups. People may feel isolated and alone. We’ll make sure they have the connections they need.”
Jimmy Choi was newly married, a new homeowner, and a professional in the technology industry when he received his Parkinson’s diagnosis.
“My wife and I were planning a family; we became adults,” he said, recalling his shock on receiving the news. “Only 10 percent of people with Parkinson’s have young onset.” (He defined young onset as being diagnosed when you are younger than 40. He was 27.) Now a father of two — son Mason and daughter Karina — he recalls “a moment of disbelief. I think I swore at the doctor.”
He had just bought life insurance, and his journey began when he went for a physical for that insurance. “The nurse worked for a neurologist, and she noticed things that I hadn’t put together, that I could explain away,” he said. “I played golf, so that could explain the stiffness. The twitches I could attribute to stress, since I worked in the technology industry and the dot.com boom was a very stressful time. A conversation with the nurse led me to talk to a doctor. There were months of follow-up appointments. Then the neurologist said I had Parkinson’s.” He was the first in his family to have this diagnosis. His grandmother was later diagnosed; she has died.
“The first few years, I ignored the progression,” Mr. Choi said. “I figured I was young and there was plenty of time. If I ignored it, it would go away. I did nothing, and unfortunately, that didn’t work out too well. I became less active, and in 2009 I was 240 pounds and walking with a cane.”
His wake up call came when he was walking down the stairs with his then-baby son, and they both toppled down the steps. “It was time to do something or throw in the towel. I decided to take back control. I didn’t know how. There’s no cure and I wasn’t smart enough to find it or rich enough to fund it.
“I decided to give up my body for science and participate in as many clinical trials as I could. I did it for selfish reasons. Maybe I would be the first to receive some miracle treatment.”
What Mr. Choi did get was information. He began educating himself on the disease, to understand how his body was affected. He found that the more physical activity he did, the better he felt. “I put it into everyday life. I started to exercise around the house, walking around the block, still using the cane. I would try to do more and more each day, first two times around the block, then three, then four. The more I did, the better I felt.”
Next he tried jogging, running his first 5K in 2012. “I kept pushing my limits. Every time I reached a goal I would push it further. I ran a 10K, then a half-marathon, and then I decided to run a full marathon. My mantra was to do more each day — 5 miles today, 5.5 miles tomorrow.”
He enjoyed the full support of his family. “My family was at every race, at every finish line.”
How did he come to be an American Ninja Warrior? “My daughter fell in love with the show early on. She begged for classes to learn how to do the challenges. And every year, she said, ‘Daddy, why don’t you try to get on.’
“I said, I can’t because of the Parkinson’s. The first year I said I couldn’t because I didn’t have the upper body strength; the next year I said I had no balance, but I was getting stronger and stronger. Finally, in 2016, I was watching and they were featuring stories of others with disabilities. They were in way worse condition than me. So when my daughter said, now what’s your excuse?, I applied, just to shut her up.”
To his surprise, the program called him back and said they’d give him a shot at the contest. That was televised in 2017. At 43, he was twice the age of the average competitor. “One of the coolest things was that Michael J. Fox sent me a message and they broadcasted it.” While he fell off at the third obstacle, “It still put me in the top 50 percent of competitors. I was brought back in 2018 and again fell but finished in the top 50 percent.” They brought him back a third time, and, he said, we’ll find out how he did by watching the show on July 1.
The show “brought a lot of awareness” about Parkinson’s, Mr. Choi said. While he’s still working in technology, “I’m accepting more and more motivational speaking engagements, and not just in the Parkinson’s community but for corporations as well. I tell them to get out of their chairs and do more exercise. I want to inspire others to be the next voice.
“My 15 minutes is coming up,” he said, and he wants his message to get more exposure.
“The hardest step to reaching your goal is taking the first step, but you won’t get anywhere if you don’t take those steps.” He said he participated in some local support groups but now enjoys a “virtual support group with friends I’ve made all over the country. We challenge each other. It’s really important — talking to people who understand.”
In the meantime, his daughter competed last season on the children’s version of the show, American Ninja Warrior Junior, “and finished second in the world in the Ninja competition,” her proud father said.
Who: The Jewish Home Family, Englewood Hospital and Medical Center, and the Kaplen JCC on the Palisades
What: Will sponsor a community program featuring Jimmy Choi, an American Ninja Warrior living with Parkinson’s
When: On June 19 from 6 to 7:30 p.m.
Where: EHMC, 350 Engle St., Englewood
How much: It’s free
For more information and registration:
Click here, go to parkinsons@jewishhomefamily.org or call
(855) JHF-PARK (855-543-7275).
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