My connection to the Parkinson’s community first came when a colleague wagged her finger in my face and said “When you get to the YMCA you need to start a Pedaling for Parkinson’s program!” I was curious and excited for a potential opportunity to do something brand new for my community in Marquette Michigan.
When I “googled” Pedaling for Parkinson’s, I kept coming across Nan Little’s name and so I pulled up another tab and ordered her book and went back to researching. I learned terms like “forced exercise” and “maximum heart rate”, watched videos of people with significant tremors get on a bike and ride around the parking lot for Dr. Jay Alberts of the Cleveland Clinic.
I was inspired by the people with Parkinson’s at the YMCA in New York City who started biking - and then restarted running and kept dancing, and the woman who said to the “Y” staff about her husband “You helped him get his smile back!”
So we started. And people came. Three years later the class is well funded and a part of the YMCA array of services available to the community. But it’s because instead of staying home, instead of taking the easy way out - people with Parkinson’s just wanted to have a good life and were willing to work for it. Some of the class were ex or current bikers - some had never been bikers and were willing to try anything to relieve their Parkinson’s symptoms, even for just a brief reprieve. The riders were of all ages, including those with Younger Onset and those long retired from their careers. One woman came to class pushed by her husband in a wheel chair to get all the way to the class room - and had trouble keeping one of her feet in the ‘cages’ on the pedals - and allowed us to experiment on a system to keep her foot in place. We finally discovered and cut off a pair of kayak straps - and even when she froze, this allowed her to keep her feet in place until she could move again.
At the beginning of one session, we could barely read the writing on the application of a retired physician, and his speech was so quiet that we met in a very quiet space to be sure we had all the information necessary to allow him to start. When he started to stay after class to talk with other bikers, we suddenly realized his speech was clearer and louder. When he filled out paperwork halfway through the class - I looked at the document and then at him and said “Oh my God I can read every word!” and he just smiled broadly at me.
One of our class members who had been a very serious biker, and whose husband still was - went and purchased new biking shoes for class! Because of her Parkinson’s she had trouble locking and unlocking her left foot into the pedal. She only needed to turn it about 2 inches - but her foot wouldn’t listen to her. If you have ever ridden a bike with these kind of shoes you can understand the challenge if your feet DO listen to you! So as instructors/staff we just learned to come over if she struggled and move her foot for her - until the gentleman next to her - whose speech was mostly gone - but was a CRAZY good biker - started helping her every class.
I do believe community is what’s going to save us - and especially for anyone who gets isolated from their friends, family, and community going’s on. But it’s easy for social workers and other health care professionals to tell you - “You need to take care of yourself!” “You need to MOVE”. While all of that is true, and is a sincere encouragement - we need to create places and spaces where you DO feel welcome and you can get the support you need.
I was so thrilled the day one of our participants told the local news media in a TV interview “they treat us like athletes here”. If you come to a spin class and bike 3 days a week for 50 minutes - you ARE athletes.
As a social worker, those participants were my teachers, and with the lessons they taught me and all the details I consumed from Nan Little’s book “If I Can Climb Mt. Kilamanjaro, Why can’t I Brush My Teeth” I started into a great adventure that helped me move across country and land in Nevada!
Sometimes it’s a little help or nudge from a friend that gets any one of us moving - be willing to listen!
Pedaling for Parkinson’s IS a spin class!