After he was diagnosed with Parkinson’s disease, Steve Iseman set out on an 8,000-kilometre trip across Canada to raise money and awareness about the disorder.
But what he experienced when it came to his symptoms during that trip piqued the interest of researchers at the University of Guelph.
Iseman, 57, who lives in Toronto, said the diagnosis a decade ago was “devastating news and frankly, it changed everything.”
Parkinson’s is a neurodegenerative disease that can impact a person’s ability to move and speak. For Iseman, it causes muscle stiffness and brain fog. There is no cure and Parkinson Canada says more than 100,000 Canadians live with the disease.
Iseman said he tried to hide the diagnosis from his friends for about five years before he decided to be open about having Parkinson’s and what it was doing to him.
He worked to stay active because he found physical activity helped alleviate his symptoms.
“I came to recognize the benefits of cycling as a way to treat the symptoms of Parkinson’s disease.”
That led to his decision to do an 85-day cross-country trip, called Spinning Wheels Tour, to raise awareness about the disease.
“Specifically, we were trying to engage with other people who had Parkinson’s, three out of four of which are in hiding or otherwise disconnected from the Parkinson’s community, and sort of draw them in,” he said.
“I was trying to get our voices together.”
Unique research opportunity
At the same time Iseman was starting his cross-country tour in 2022, Philip Millar, a University of Guelph human health and nutritional science associate professor and researcher, was doing an exercise clinical trial that was funded by Parkinson Canada.
“We thought it was a really unique opportunity to be able to test him before and after such a really large kind of dose of exercise.”
The study into Iseman’s trip across Canada and the benefits he saw have been published in the journal Physiological Reports.
Millar said he was aware Iseman was already taking part in regular exercise and was physically fit, doing an average of about 300 minutes per week of cycling, “more than double what the average recommended guideline is.”
“We were unsure of how much more benefits he might see.”
It was thought that, given his physical abilities, Millar wouldn’t see any additional benefit from the cycling trip across Canada.
“That’s not really what we saw at all,” Millar said.
“We saw across almost all of our parameters, he got fitter, some of his motor symptoms decreased, he got stronger.”
Millar said while the really high-volume, high-intensity workout Iseman was doing “isn’t practical for recommending to patients … it is encouraging that it will tell us that there really isn’t an upper bounds to the benefits.”
Exercise is good, more is even be better
Iseman said he definitely felt the benefits on the bike ride — so much so that one day, he tried to go without taking any of his medications.
“It wasn’t great — the symptoms were still there — but it was a testament to the fact that it crossed my mind,” he said.
Millar said they tested Iseman using different scales and ratings, and noted:
- On the Unified Parkinson Disease Rating Scale Part III, his motor score decreased 44 per cent, from 46 to 26.
- Iseman’s ability to generate power through knee extensions increased 12 per cent over the trip.
- His score on a standard test to measure Parkinson’s fatigue, the PFS‐16, decreased 32 per cent, from a 3.4 to 2.3.
Millar said the big takeaway isn’t that people with Parkinson’s should work their way up to being able to cycle across Canada.
Instead, he said, the message is that exercise is good and more is even be better.
“We would have expected that [Iseman] would have already gained a lot of those benefits because he was already doing 300 minutes a week of exercise. So, you know, some might argue that there isn’t going to be room for anymore modification,” Millar said.
“After the trip, when we compare his aerobic fitness to healthy age and sex-matched controls, he was about 150 per cent of normal. So you know, here’s someone that has had Parkinson’s for, at the time, about eight years, and his fitness level is running 150 per cent of what the average Canadian for his age and sex is.”
Iseman’s story ‘an inspiration’
While it’s a review of the experience of one person, Karen Lee, president and CEO of Parkinson Canada, said Iseman’s story is “an inspiration and demonstrates the resilience of the Parkinson’s community.”
The Parkinson Canada National Research Program has invested $31 million in projects since 1981, including Millar’s work, and Lee said in an emailed statement that Iseman’s experience has been proven through other research.
“We have seen time and time again that exercise has positive benefits for people with Parkinson’s,” Lee said.
“The most important takeaway from this research is that it helps equip people with Parkinson’s with information to make informed decisions about the best approaches to manage the disease.”
The research on the exercise trials Millar was working on in 2022 when Iseman was doing his ride across Canada are set to be published later this year.
As for Iseman, he has plans to go to northern Norway for a cycling event that “I can’t resist.”
Then, the Spinning Wheels Tour is coming back this summer. They plan to start this time from the Arctic Ocean, where there are “surprisingly few roads,” Iseman said.
“It’s going to be done as a relay and I’m only going to be doing a bit of it,” he said. “If all goes according to plan, we’ll start at the Arctic Ocean and come south.”