Three cyclists with Parkinson’s disease have made it their mission to bike across the country and this morning, they made a pit stop in Parry Sound as part of their cross-Canada tour.
Jim Redmond, Steve Iseman and Mike Loghrin are the bikers behind the Spinning Wheels Tour. They decided to take the trip as a way to increase awareness and understanding of Parkinson’s while also raising money for critical research on the disease. They started their journey in Victoria, British Columbia on June 25 and will finish it in St. John’s, Newfoundland, where they have a ferry booked for Sept. 16. After going from Sault Ste. Marie to Sudbury in the last few days, the crew made their way to Parry Sound for a meet-and-greet at Canadian Tire this morning.
“We have very fond memories of Parry Sound,” said cyclist Jim Redmond. “Both Steve and I have been here riding before multiple times for another Parkinson’s cycling event and we really can’t wait to get back on the roads around Parry Sound.”
About 50 people came out to the event, half of which got on bikes and rode with them as they headed south toward Orillia. Stops like these allow them to connect with fellow Canadians who have Parkinson’s while also educating those who are unfamiliar with the disease.
Parkinson’s is a degenerative brain disorder where certain nerve cells break down and die off, causing a decrease in dopamine. Dopamine is a neurotransmitter that plays a role in many body functions, so when it decreases, it can cause a variety of mental and physical symptoms including tremors, slow movement and speech changes.
The process is typically gradual, so many people don’t get diagnosed until years after the symptoms begin to appear. Over 100,000 people in Canada live with Parkinson’s and that number is expected to rise.
“The number of people diagnosed is set to double in the next 18 years and Canada is the per capita leader in the world of people being diagnosed with Parkinson’s disease, and nobody knows what causes it,” Redmond said. “Nobody knows why Canada is at the forefront in that terrible stat.”
That lack of understanding shows how tragically underfunded research is, he said. It’s crucial to raise money to fund studies in addition to creating resources like physiotherapy, exercise classes and support groups for the growing number of Canadians with the disease.
Redmond also wants people to understand that you don’t have to be elderly to receive a Parkinson’s diagnosis, and the symptoms don’t always look the same. He has lost most of his sense of smell, but his fellow cyclists haven’t. Tour member Mike Loghrin has a frequent tremor that neither Redmond nor Iseman experience.
There is no known cure for Parkinson’s, but medication can help manage the various symptoms and the Spinning Wheels team is tracking their medication using the Dopameter.
“The Dopameter is a tracking of the medication in milligrams that Steve, myself and Mike are taking to get us across the country,” Redmond said. “We’re hoping that the dollars we raise beats the amount of milligrams in medication that we’re taking. So far, the dopamine is leading the funds raised, but we’re hoping that that changes.”
They’ve raised over $45,000 so far. At their various stops and events, they’re selling Spinning Wheels Tour t-shirts and jerseys along with raising money through GoFundMe and their website. They’ve selected charities in each province to support through the ride, but their lead charity is Passion For Parkinson’s.
As Ontario natives, the three cyclists are excited to be back in their home province with an exciting few days ahead of them. Now that they’ve passed through Parry Sound, they’ll continue on to events in Collingwood, Waterloo, Mississauga, Hamilton and Peterborough.
They’ve noticed along their trip that a majority of people with Parkinson’s don’t seem to engage in a formal support group or exercise class, so along with spreading overall awareness, they’re also aiming to help encourage community engagement.
“When you join the community, we think it gives people a little bit more hope because you feel like you’re not so alone, and we’ve met some people who feel that they’re alone in their Parkinson’s disease journey,” Redmond said.
Steve Iseman said the trip has exceeded his expectations so far, and a big part of that is making connections with and providing support to people who have Parkinson’s.
“We’re putting ourselves out here and saying who we are and what we have and what we’re trying to do, and it’s stimulated a lot of people to come up and approach us and tell us their stories,” Iseman said. “In a lot of the circumstances, they really had nobody to talk to.”
Many people from small communities didn’t know anyone with Parkinson’s or a similar condition, so they didn’t have anyone to have deep conversations with aside from their doctors, he said. Going on this cross-country tour has allowed Iseman and his fellow cyclists to be in the right place at the right time for people who need that kind of community.
Everybody with Parkinson’s starts their journey with a difficult day of diagnosis, he said, and what happens that day and shortly after can set their attitude for how they’re going to deal with the disease. The people with Parkinson’s who come out and meet them on their journey can expect to receive compassion, support and positivity.
“Rather than focusing on all the negative things that you imagine are ahead of you, it’s to say, ‘Look, start focusing on the things that you can do and the things that you want to do and get at it,’” Iseman said. “We think that really makes a difference in people’s lives and we have had that ability multiple times on this trip.”
The trip itself and the support they’ve received along the way has meant a lot to the cyclists. One highlight was visiting Kindersley, Saskatchewan where some of Redmond’s family lives. The people of Kindersley poured into a reception hall to greet them and along with donating a significant amount to their fundraising, they “also donated their time and their energy and their sweetness,” Iseman said.
Another highlight was in Winnipeg, where they spent a day with the folks at U-Turn Parkinson’s. They did a meet-and-greet, joined a boxing class and learned more about how the organization helps people with Parkinson’s.
The three men are looking forward to making more memories as they head toward the last leg of their journey. Cycling across the country is difficult, Iseman said, but he’s happy to challenge people’s expectations and show them just what a person with Parkinson’s can do.
“We’re not suffering,” Iseman said. “We are, frankly, having the time of our lives.”