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SINGAPORE \u2013 Ask Parkinson\u2019s disease advocate Jimmy Choi for a short video clip on his invisible symptoms and how he is preparing for a future with the neurodegenerative condition, and he gives it to you in a single take.\u00a0<\/p>\n
\u201cThey call me one-take Jimmy,\u201d said Choi, a 51-year-old Taiwan-born American, who was diagnosed with young-onset Parkinson\u2019s disease at 27.<\/p>\n
Choi, a social media advocate @jcfoxninja and motivational speaker, is a seven-time American Ninja Warrior competitor and endurance athlete who has completed an ultra-marathon, multiple marathons and triathlons and a 161km bike ride in under five hours.<\/p>\n
But beyond the confident public image and rippling muscles is the reality of living with a progressive disease in a body changing with time, he told The Straits Times.\u00a0<\/p>\n
He and his wife Cherryl, 50, are in Singapore to headline the Oct 31 launch of Warrior 24\/7, an experiential exhibition designed to raise awareness of Parkinson\u2019s. Choi is also speaking at a fully subscribed symposium for about 320 people.<\/p>\n
Organised by the Lien Foundation in collaboration with Parkinson Society Singapore (PSS) and other partners, the exhibition has six interactive stations that offer a glimpse of how someone with the condition lives every day, for instance, with hands that will not hold steady, feet that freeze mid-step, handwriting that shrinks and a voice that fades.\u00a0\u00a0<\/p>\n
It will be held at the Singapore Institute of Technology Punggol Campus from Oct 31 to Nov 4 and at City Square Mall from Nov 7 to 15.<\/p>\n
Parkinson\u2019s is an incurable movement disorder of the nervous system that worsens over time. Many symptoms are caused by a loss of neurons.<\/p>\n
The biggest misconception people have about the disease is that it is all about tremors, Choi told ST in an interview at AMK Hub.<\/p>\n
\u201cBut 30% of people with Parkinson\u2019s don\u2019t ever have tremors.<\/p>\n
\u201cI have tremors, but it doesn\u2019t really bother me that much. The top three things that I wish I didn\u2019t have with Parkinson\u2019s are dystonia (involuntary, sustained or repetitive muscle contractions), rigidity and bradykinesia (slowness of movement).\u201d<\/p>\n
Choi is always actively keeping the right side of his body upright. \u201cI\u2019m always pulled to one side. So, the best way to help fight against dystonia is strengthening the other side,\u201d he said.<\/p>\n
Many of the condition\u2019s most significant challenges are not related to movement. These include apathy, difficulties with speech and voice volume, and changes in facial expression.\u00a0<\/p>\n
Choi gets disrupted sleep every night, averaging just four hours due to symptoms.<\/p>\n
\u201cCramps and movement wake me up. I am always tired,\u201d he said.\u00a0<\/p>\n
He seldom misses his 45-minute workout sessions. He is at the gym six times a week, often as early as 6am, working out at a target heart rate of 148, or 80% of his maximum heart rate.<\/p>\n
On why he trains, he said: \u201cEverything that I do in the gym has a purpose in my life with Parkinson\u2019s.\u201d<\/p>\n
But his goals have evolved. \u201cI\u2019m not looking to always make improvements or gains. With a progressive disease, if I\u2019m able to maintain (my current state), I\u2019m actually winning.\u201d<\/p>\n