Four lessons learned about the Canadian Parkinson’s community on a cross-country bike tour

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Steve Iseman, Mike Loghrin, Darlene Richards-Loghrin, and Jim Redmond, with the invaluable help of their dear friend and fellow Rigid Rider Mike Snitsinger and Jim’s wife Krista, were able to cycle 8000 km from the Pacific to the Atlantic Ocean, zigzagging north and south to meet with countless Canadians impacted by Parkinson’s.

When gearing up for a cross-country cycling tour to spread awareness about Parkinson’s and the importance of physical activity, the Spinning Wheels crew had some ideas about what they wanted to achieve:

  • Raise an impressive amount of money for local charities that support wellness programs for people living with Parkinson’s. Check! The tour has raised about $115 thousand dollars to date.
  • Set a new standard of what people living with Parkinson’s are personally capable of. Check! Each of them broke personal records from distance covered in one day to most incline travelled in a day, and many more.
  • Meet and inspire people living with Parkinson’s to get active. Check! Whether it was at organized events set up in various cities, or in serendipitous conversations in grocery stores or campgrounds, the group met and shared how to live better with Parkinson’s through exercise.

What they learned from 85 days of travel, stopping in as many towns along the way as time would allow, far surpassed anything they could have anticipated.

Lesson one: Traveling isn’t about what you see and accomplish, but about who you meet

Steve shared that when they each reflected on their time on the road, their favourite places were  always about the people. “Vistas are nice and challenges are rewarding,” he says. “But the personal connections that we made along the way were the most enriching part of the journey.”

They made connections with strangers who quickly became new acquaintances. Many of whom were approaching the crew to talk about their Parkinson’s for the first time, having not even disclosed to anyone in their own lives yet.  “We would be in a conversation with someone we had just met and within a minute one of us would be crying and having the most personal conversations,” shares Steve.

The group was honoured time and time again to provide answers to the questions and fears brought forward during these priceless interactions. They provided a sense of hope and an alternative story of what living with Parkinson’s can be. “I think the people we met had grown to expect the worst, and not only were we telling them something better, but we were also demonstrating something better,” Steve says. “We still get emails from people who we met along the way saying, ‘you know I thought about what you said and did decide to join a club to get more active, or bought a bike, or something’.”

Lesson two: There never feels like enough time

Even after 85 days of travel and an intentional route to zigzag across the country rather than a straight shot through the provinces, they still felt they could have done more with more time.

At the beginning the group was always surprised by serendipitous encounters, but eventually, they became so plentiful that the team valued those moments as much as the connections made at their organized events. No matter the environment – spontaneous connections made while out and about, or anticipated connections made at community events – the crew always felt there was more to do and offer before the clock ran out and they were headed to their next stop.

They are a small and mighty crew who accomplished an amazing undertaking, stretching their resources as far as they could. But they shared that if there was a future cross-country tour, it would encompass a more robust media lineup, allow for more stops and more time in each place and extend its reach to attract more participants to the organized events.

Lesson three: The mission can evolve

At the outset, the team knew they wanted to:

  • Communicate the importance of an active lifestyle with a Parkinson’s diagnosis.
  • Inspire the broader Canadian Parkinson’s community to commit to more exercise.
  • Spread awareness of the needs and capabilities of people living with Parkinson’s.

Because of that ambitious mission and the obvious physical nature of the tour, there was an emphasis on cycling as the activity of choice and the ways in which cycling specifically can be a key player in the life of someone with Parkinson’s.

But the mission began to shift focus onto the significance of personal connections among Canadians living with Parkinson’s and inspiring people to seek connections with others in the Parkinson’s community.

People living with Parkinson’s, but not connecting with others before coming across the Spinning Wheels tour are much like Steve who kept his diagnosis to himself for many years. While there are reasons for wanting to keep a diagnosis to yourself, like experiencing stigma in its many forms, many who they met along the way didn’t have an actual reason when asked “Why?”

Steve says, “It was more like an instinct to keep it to themselves. When they are brought to think about it, they don’t know why they’re keeping it so close to their chest.”

Learning that about their fellow Canadians living with Parkinson’s fueled the team to reach more people along the way. “When it came down to it, they wanted to talk, they wanted to connect, but they’re hard to find because they haven’t found a way to enter the community just yet.”

It will always be important to the group to share how important staying physically active is. But meeting so many people eager for connection showed them that communicating the importance of staying active in your relationships and friendship is just as important to your well-being as committing to exercise.

Lesson four: Everyone has a role to play, especially the friends and family of people living with Parkinson’s

As Steve, Jim, Mike and Mike know, receiving a Parkinson’s diagnosis makes it difficult to picture your future as you once did. Reconciling how life will be different, but not necessarily ‘bad’, takes a lot of time and can be an isolating experience.

The group wants to empower the friends and family around people with Parkinson’s to discover their role in the life of someone living with Parkinson’s. « We want them to know there is always something they can do to help keep their friend with Parkinson’s from settling into the dark and withdrawing from the things that once brought them joy,” says Steve.

“Find ways to keep them involved when they’re struggling to see their value,” Steve says as he recalls meeting a man who once loved to play tennis at his local club but no longer attends because he doesn’t play as well now. Steve reminded the man that if he were to ask his friends if they cared about his decline in skill, they would reassure him that it’s his company and friendship that matters, not how well he plays tennis.

Empowering friends to proactively seek out, invite and reassure a person living with Parkinson’s that their friendship and presence never lost its value would have a great deal of impact on helping that person discover life is still possible.

“Don’t let your friends disappear,” the group says.  “Your role is to encourage, remind and keep in touch with your friends living with Parkinson’s.”