Editor’s Note: Jim O’Connell, age 65, is an advocate for the Parkinson’s community and lives in Alexandria, Virginia, with his family. He was diagnosed with Parkinson’s disease at age 46 in 2006. Jim is a retired former journalist and is working on publishing an upcoming manuscript related to his Parkinson’s journey.
I fell in a grocery store yesterday.
When I use a shopping cart, I find it slowly gains speed until I'm both pushing it and chasing it down the aisle. Of course, watching a man as tall as Michael Jordan but much heavier and less coordinated careening down the bread aisle and on a collision course with the dairy section may be more awareness for Parkinson’s disease than some shoppers are prepared for.
That’s the thing about seeking support for our cause: we can't choose when we will be noticed and when we will be politely ignored.
Last year in Tampa an elderly woman in a big sedan overcame her concern for her own safety and pulled to the side of the road to where I was walking in dripping heat and humidity to ask if I needed a ride. I was a little insulted because I thought I was successfully imitating the way “normal” people walk. That was until a second, and then a third motorist pulled over in quick succession to offer help and it became obvious the general public’s consensus was I needed a ride now from a kind stranger or would soon require one by ambulance.
Once I took a walk on a popular route from my hotel in Lexington, Kentucky across a bridge over the Ohio River and back, a modest distance but far enough that I kept an eye out for a bus I could hop on to take me back.
Having no luck with buses I finished the path on foot and immediately heard cheering. I looked around and discovered to my shock that a group of hikers had been monitoring my progress and were cheering at my completion of the hike from a platform above the bridge. I was embarrassed. It was like a crowd gathered in my bathroom to cheer my finishing a shave. A private moment in which I could be proud of my minor achievement after 19 years of battling Parkinson’s suddenly felt like a pity party for a performing monkey.
But that’s the thing, you can’t ask for awareness of your disease journey only when it’s convenient or appropriate, like calling on donations toward a cure. We have to accept, even embrace how we appear to others at our best and our worst times. We don’t have to wear buttons saying, “This crazy grocery cart is powered by Parkinson’s.”
But it’s a reminder of the power we each have in sharing our story. Using gatherings in your neighborhoods and community to work in conversation on the difficulties the disease poses — maybe leavened with humor — would be appropriate. After all, we’ve been diagnosed not shamed.
Editor’s Note: The Parkinson’s journey can feel isolating at times, both for those living with PD and their loved ones. Check out The Michael J. Fox Foundation’s candid and relatable guide, Parkinson’s 360, on navigating the Parkinson’s journey here. And know that you’re not alone in Parkinson’s. Some people find support by talking with a loved one, and many find it helpful to connect with others through support groups and online forums such as the Parkinson’s Buddy Network or even exercise classes. Learn more here.