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At 48, Steven Iseman's life changed when he received a devastating diagnosis of Parkinson's disease.
But he is now leading scientists on a path that may help others with the disease after helping confirm that intensive exercise, via his long-distance cycling, pushed his physical limits and improved his Parkinson's symptoms like tremors, stiffness and brain fog.
"I think that exercise is the main thing that's making the difference," said Iseman, now 58.
While he still takes medication to control the symptoms, he says daily intense exercise takes "the edge off."
The team at the department of human health and nutritional sciences at the University of Guelph, led by Philip Millar, studied Iseman before and after a gruelling 7,850-kilometre cross-country cycling trip in 2022.
The changes were "profound," Millar said, suggesting those with Parkinson's can manage their symptoms and disabilities with additional exercise.
"He got fitter, and he got stronger," said Millar. "And probably the most surprising for us was that his motor symptoms went down so significantly."
The study showed a decrease in Iseman's motor symptoms score by 44 per cent on the Parkinson's Disease Rating Scale and a decrease of 32 per cent on a test measuring Parkinson's fatigue.
Exercise didn't worsen his Parkinson's – it was a form of medicine.
"He was doing very high duration but also quite high-intensity exercise, which we think is a really critical feature," he added.
"It is suggesting to us that the general recommendations that we give to the population probably are not the upper limit to seeing one's benefits," said Millar.
In fact, the longer Iseman exercises, the better he feels.
"The brain fog that I experience... lifted, not permanently but for a period of time when I was cycling and, as I kept cycling, it would last longer and longer," he said.
While people may normally decrease activity or use mild exercise to avoid falling after learning of their diagnosis, Iseman persevered.
"They're immediately afraid, they're more sensitive about what they can or can't do," said Iseman, a retired lawyer based in Toronto.
"They're more attuned to whether they have stability issues, and they start the typical person goes into a shell," he added, saying he hid his diagnosis for the first few years after doctors confirmed his condition.
It was a visit to a Parkinson's fundraiser nearly five years ago that encouraged him to get on a bike.
"I looked around for all the other people with Parkinson's and there were none," he thought, vowing to return the following year with a team made of people with the disease.
"That meant that I had to come out of the closet and no longer be in hiding. And I dived into exercise," he said.
Dr. Lorraine Kalia, his neurologist and a senior scientist with the Krembil Brain Institute at the University Health Network in Toronto, is impressed with his "unique" case and believes exercise is a contributor.
"There's been very little progression in terms of his disease, Kalia said.
"He of course is on medication for Parkinson's, but we've made minimal changes over the past couple of years."
She acknowledges that not everyone can exercise as intensely as Iseman and physical activity must be tailored to the individual case, but ultimately exercise needs to be part of treatment plans.
"I think what was the important take-home message from that report in particular is that, and maybe not surprisingly, more is better," she said.
Millar points to another study underway, in partnership with Parkinson Canada and the YMCA, that is looking at short high-intensity programs versus longer-duration exercise in a group of people with Parkinson's to define how much exercise is required to get the best results.
Early results suggest more movement is a better prescription.
"They often feel like they can't, but you put them on the bike and they can do it," said Millar.
Iseman's goal is to get others on a bike, launching the "Rigid Riders" with a friend in 2018 to train others to complete a 40-km ride.
His enthusiasm is contagious.
"We have grown every year and incredibly we have a 100 per cent success rate to date at getting our riders over the finish line," Iseman told CTV News as he and colleagues work to make it a national program.
"This magical thing that happens when you decide that you're not a victim anymore. You're not victimized by your Parkinson's, and one way you signal that to yourself, to your brain and to your body is by trying something hard," he said.
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