living with parkinson's disease: one woman's journey transformed by endurance cycling
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after the long bike rides in 2024, li jiang has found that everything has improved. her symptoms are reduced, she’s stronger and happier. even her neurologist is impressed.
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li jiang’s life-changing moment happened during a cycling trip across a chunk of the u.s. from may 1 to july 1, 2024. she and two others with parkinson’s disease started the trek to raise awareness for the disease in yorktown, virginia and cycled to san diego, california—an unforgettable achievement.
“that journey saved me,” she says. it eclipsed the darkness and exhaustion she’d experienced over the years living with early-onset parkinson’s, giving her a renewed sense of the possibility of what she could do with her life.
she wouldn’t let a debilitating chronic disease derail her. that takes courage and determination.
parkinson’s is a brain disorder that causes unintended or uncontrollable movements like shaking, stiffness, and difficulty with balance and coordination. it usually gets worse over time.
finding purpose in parkinson’s disease
“before i started the u.s. ride, i thought it will be a very hard experience, but i’m doing it for a bigger purpose. i’m doing it for other people. if other people see i’m doing a hard thing, they might push themselves in their own life.”
but the day before the ride started, the three started talking to get to know each other better. li, 35, says during that conversation with the two men, one from toronto and the other from chicago, she realized she’d been living in a void since the pandemic. she tried to offset the pain of the whole-body spasms and the constant tug of her neck constantly in motion by going to the gym most days.
but what was all that really for?
“i was just existing, not really enjoying life,” she says. the cross-u.s. ride, however, was giving her purpose.
“i realized it is really for me because i needed something to focus on to get me out of that day-to-day suffering. and on that ride, every day is so difficult, but i was so focused on just one thing, just to ride forward 100 kilometres. and at the end of the week, i felt so much more physically and mentally prepared.”
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she followed that ride with a two-month trek in canada, cycling with a larger group of people for parkinson’s, starting from deer lake, newfoundland, on july 26, and finishing in ottawa on september 28.
august kicks off another cycling journey to raise awareness for parkinson’s
this august 2, she’s heading out again for a canada group ride from hamilton that finishes in toronto on september 13 with a potential 200 cyclists.
it’s an intense ride, but meaningful in many ways for li. as she explains it, the ride is “to have the capacity to share whatever i have with other people, to encourage people to get out, be active, be part of the community.”
she shares her story openly about living with parkinson’s for the national advocacy and support organization, parkinson canada, and is starting a new chapter this fall, studying to become a physiotherapist.
but for years, li hid her parkinson’s, suppressing her symptoms in public and pretending she was fine (collapsing at home in exhaustion). she grew up in china, where people present themselves as capable and aren’t open about health issues and struggles. with little empathy for disabilities in her homeland, her family advised her to keep her disease a secret.
li jiang’s message to others new to parkinson’s disease is one of self-acceptance and hope. “you will have a beautiful life ahead of you if you want to, if you choose to,” she says.
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her symptoms began when she was an active, athletic teenager who loved running. she noticed she was falling often because she couldn’t control the muscles in her right leg. so, she switched from running to swimming, but then experienced weakness in her right hand, which was her dominant writing hand.
“i was a student, so that caused huge stress because i couldn’t write anymore. and i remember i started to teach my left hand to write, and it’s so slow and frustrating, but i managed to finish all my homework and assignments.” after seeing several doctors for tests, she was diagnosed with early-onset parkinson’s at age 21 and faced the emotional burden of not sharing her diagnosis.
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she was prescribed the daily oral medication levodopa, a common and effective drug to help control symptoms. while many people find it works well for five or six years, she had 10 years of success on the medication.
during these years, she worked in finance and then moved to canada in 2018 to pursue an mba in business management with a specialization in finance. with her mba, she began working in the non-profit sector, where she felt surrounded by people who were passionate about helping others. she decided to open up about her personal experiences and living with a chronic disease.
showing vulnerability brings friends closer together
“i just thought, wow, this started an unbelievable journey with other people because it immediately drew us closer as friends. i felt so much support from everywhere.”
then, during the isolation of the pandemic and not leaving home for sports, li’s symptoms progressed rapidly. she reached out to a mental health helpline and later found a cycling club for people with parkinson’s called rigid riders, dedicated to getting people to “go hard” and reap the benefits of cycling—muscle strength, flexibility, and balance—and awesome friendships. a 2021 review of the science on cycling for people living with parkinson’s disease confirmed that bicycling improves motor outcomes and, to a lesser extent, cognitive outcomes.
as li says, “i fell on my first ride. i just didn’t have that balance, and i was struggling to keep up with everyone at that time, but everyone was so welcoming, and i just felt i belonged to that group. i just joined them every week afterwards. every sunday we went bike riding and i started from 10k to 20k, then more.”
in fact, after the long bike rides in 2024, she has found that everything has improved. her symptoms are reduced, she’s stronger and happier. even her neurologist is impressed.
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“because of those very intense endurance exercises i did last year, my neurologist, he said, looking at me, ‘you might have tapped into something magical about neuroplasticity,’” she says.
not everyone with a debilitating disease is as fortunate, though. li’s been reflecting on how people living with parkinson’s are perceived. “when you go out, you meet friends, they sometimes say, ‘oh, you look good’, but what they’re actually saying is ‘you look good as a person with parkinson’s ’, but should i look good? should i show people how i struggle at home? where’s the balance?”
recognizing heroes who struggle with chronic disease
in her eyes, everyone who lives with a chronic disease is a hero and should be recognized. she volunteers at a physiotherapy clinic in hamilton every week and felt the pain of a man in a wheelchair who was crying out of frustration and hopelessness.
“many people are trying to get up from their wheelchair every day, and that requires so much courage and perseverance. i think we need to acknowledge that they are doing these hard things every day. it is not any less than riding across canada or the u.s. i’m very fortunate and grateful to be on a bike, but many people, they can’t be on the bike, but they are still doing very hard things, but they’re not seeing that in themselves.”
her message to others new to parkinson’s disease is one of self-acceptance and hope. “you will have a beautiful life ahead of you if you want to, if you choose to,” she says.
“my life trajectory is focused on parkinson’s because i was diagnosed in my early 20s when i was just forming my value system. and because of this disease, i decided to go to the non-profit sector. i decided to come to canada. i decided to join this cycling club to meet this community of amazing people who lead me to new opportunities.”
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