“Today we collected as a team. I am travelling to Nepal with my wife and all of my sisters, and blessed with the company of my brother-in-law and friends. We are a team of ten and start with a guided food tour of the Kathmandu Asan market area. The name ‘Nepal’ must be a contraction of the term ‘narrow entrances, populated alleys,” as our tour requires that we tunnel through impossibly thick crowds of local shoppers, motorcycles and trucks to find secret stashes of exceptional street food. We are in a different world,”
Steve Iseman in his blog from Nepal, February 2020.
What do you do when life gives you Parkinson’s?
In Steve Iseman’s case, you go to Nepal and trek up to a base camp at the foot of Mount Everest. You push your physical boundaries; develop more red blood cells to better distribute oxygen with dropping levels; bike on steep paths shared with yaks and donkeys and dung; wear three layers of clothing; camp near a glacier that has taken many lives; and live as though it is your last day, every day, until whenever….
Steve Iseman was diagnosed with young onset Parkinson’s disease in 2014 and, over time, developed cognitive limitations that made his working life a challenge. An avid biker and nature enthusiast, he increased his activity levels as he learned more about the disease, the importance of intense exercise and what medications worked. He found that intensive exercise seemed to have a profound effect on his physical and mental health.
Steve searched for like-minded people in a Parkinson’s community. Fact was, there were little to no resources to refer to and conversations with others in the same boat were few and far between.
Steve did what he knew best—he shared his enthusiasm for athletics with others. He signed up for Pedaling for Parkinson’s—an all abilities ride with distances ranging from 40 to 120 km, founded by Peter Istvan and David Newall. Pedaling for Parkinson’s spans three days, where cyclists pedal over 100,000 strokes, representing one for each Canadian living with Parkinson’s.
2018 was the final year of the ride in Parry Sound, Ontario and it was during that final event that Steve Iseman and Peter Istvan met. So began a friendship that would lead to other exciting events, including inspiration for a new cycling team called Rigid Riders—and that famous trip to Nepal.
Steve was on a mission—to build his Parkinson’s community—a group of people sharing the same disease, the same concerns, the same fears, and the same daily challenges; a group of individuals who needed to get up, get out, reach out and get active. It came together when Steve enlisted the support of his friend, Mike Loghrin, who possesses the organizational skills necessary to get things moving. Together, they started the Rigid Riders.
As the name Rigid Riders suggests, people with Parkinson’s experience motor symptoms that make them less mobile. With recent research confirming the importance of exercise specifically for people with Parkinson’s, Steve knew from experience that folks had to be exercising and motivated to get out onto bikes and get moving. While the groups at Pedaling were all compassionate and generous, they were not the Parkinson community that Steve knew had to come together to support each other with a shared diagnosis—and a bike ride or two.
At first, folks declined for simple reasons—I will fall off my bike, I cannot ride, I have no balance, I have no bike…. On average it took 6 or 7 rejections for a rider to arrive at “yes” … and a robust supply of bikes and volunteers.
The first Rigid Riders ride took place as part of Pedaling for Parkinson’s in Prince Edward County, Ontario in July 2019. What Steve expected to be about 10 riders turned out to be over 30. Many who said they would fall off their bikes did—and got up and kept going.
The greatest rewards came after the event—while they raised over $30,000 towards research into Parkinson’s, the most satisfying moments were seeing people who were frightened at the thought of getting up on a bike, actually doing it … then going out and buying bikes afterwards to keep up the exercise and camaraderie.
“Why do we do hard things? We are already surrounded with fulfilling experiences that are convenient—a meal at a favourite restaurant, exciting live theatre, time out with friends—where is the justification to do things that are hard, uncomfortable, labour intensive. I think that I know the answer. Convenient joys are a great way to express our character; inconvenient joys—those that are earned through rigour, determination, even suffering—are a chance to develop our character.”
Steve Iseman, blog from Nepal, February 2020.
Steve is in touch with several healthcare providers in his community as well. One recently referred him to someone diagnosed 9 years ago. Steve was surprised to hear that he was the very first person with Parkinson’s that this man had ever met. Imagine suffering in silence with a pronounced tremor, almost in denial… Steve is determined to change all that.
“The more people that we can collect and infuse with energy and purpose and reason to exercise, the more of these people who are suffering in silence can hear about our community and will come find us,” says Steve.
This inspiration changes lives, one person with Parkinson’s at a time.
More Information on Rigid Riders
Connect with the Rigid Riders on Facebook.
All the images in this articles are from Steve Iseman’s travel blog about cycling and trekking in Nepal. Read more about Steve’s journey.
If you or someone that you know should be part of the Rigid Riders team, you can reach them at email@example.com.
For recorded webinars and podcasts, visit Parkinson Canada’s YouTube Channel.