Sweating in his North Saanich home, Andy Robinson spends roughly 3.5 hours a week zooming a bike around hillsides around the world.
He takes the virtual rides alongside friends around the globe who have a couple of things in common: each lives with Parkinson’s and is looking to stave off progression of the complex brain condition with exercise. The Zwifters Against Parkinson’s virtual cycling group is just one source of motivation and camaraderie for Robinson, who is among about 3,000 Islanders – and 110,000 Canadians – who live with the progressive neurodegenerative disorder.
Enjoying his late 50s, Robinson was slowly sliding into retirement mode a decade ago, taking contract work and slowing down on the work side of things when something physically changed.
His gait changed. He had a tight shoulder and a tremor appeared.
Robinson already had an inkling in the back of his mind that Parkinson’s “was definitely an option” even as he made a doctor’s appointment.
The GP sent him to a neurologist who confirmed that fledgling thought was fact.
“It wasn’t actually as big a shock as I thought it would be,” Robinson recalled.
Some people deny, deny, and deny some more when faced with the diagnosis.
“It happened fairly quickly for me.”
Parkinson's affects the central nervous system, causing symptoms such as tremors and stiffness as well as non-motor symptoms including sleep problems and depression. The disease is caused by the loss of brain cells that produce dopamine, a neurotransmitter crucial for coordinating movement.
While there's no cure, treatments can help manage symptoms and improve quality of life.
“Initially, it doesn’t progress all that quickly for the first few years. I had some symptoms, but it wasn’t affecting my life as much,” Robinson said.
Balance is an issue, and he had to give up sailing in recent years, but things such as cycling – in the real world as well as virtually – remain activity options. And activity is critical for managing symptoms.
Referred by his neurologist, he took on a leadership role, serving as chairman of what was then called HeadWay before its merger with the Parkinson’s Wellness Project.
While every individual’s journey is different, PWP in Victoria affords a place to hang out with people who face similar challenges. The organization focuses on activities proven to slow the progression of symptoms for some people.
They’re tailored to the demographic, with flexibility for the diversity of impacted clientele. One classroom is covered with a foam floor in order to specifically practice falling, as well as working on core strength. Robinson’s a fan of the Rock Steady Boxing. He figures keeping active has helped his symptoms, and there’s no evidence for the alternative.
Anecdotally, there are active folks who haven’t gotten worse year-over-year in what is generally a progressive disease.
“You only have an experiment of one, so you don’t know what would happen if you didn’t do it,” he said. “I’m definitely getting worse, my balance is getting worse, but I think I would have gone more quickly if I hadn’t remained as active as I have.”
Beyond the physical challenges, Parkinson’s can evoke emotional and mental health considerations that are equally important to address.
“Depression and apathy are quite common symptoms of Parkinson’s,” Robinson said. The Wellness Project offers counselling services, but also the very casual comfort of a central lounge, laid out living room style.
“If you just go to the classes and leave, you don’t make any connections with people. This way you make connections,” Robinson noted. “Loneliness is a big issue for seniors in normal times, it’s even more important with Parkinson’s because it’s hard to do things on your own.”
The camaraderie is also diverse, with folks from all walks of life utilizing the services. While donations are welcome – those and grants are how the organization is entirely funded – PWP doesn’t charge for services, providing an even playing field.
With Parkinson's Awareness Month (April) now in the rearview mirror, Robinson worries about those who may not know there are resources available (parkinsonwellness.ca).
“I still think there are people, even with Parkinson’s, in Victoria who don’t know about us, because there are people who are quite isolated, I think.”
