My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
I unexpectedly joined a new club today. By now, 10 years after my diagnosis of Parkinson’s disease, I have gotten used to being an involuntary member of the “People with Parkinson’s” club. But after visiting with Peter, a college classmate I haven’t seen in the 40 years since graduation, and learning he had suffered a stroke, I realize I am part a much larger club populated by people impaired to one degree or another by any of a diverse collection of medical conditions.
Peter described his experience of the stroke itself and enlarged his story to include his long road to a stable state of near recovery and his reaction to continuing limitations. I found myself nodding in agreement and eager to add my own experiences to his narrative. I interjected, “Don’t you hate having a new identity thrust upon you?” Peter replied, “You mean that you’re now the ‘person with Parkinson’s’ and I’m now the ‘person who had a stroke,’“
I was shocked when people began to view me in a different way once they learned about my new medical status. Friends and even just acquaintances began to ask me upon greeting, “How ARE you?” with a big emphasis on the word “are” and a well-meaning, sympathetic look on their faces. Early on I would say, “I’m doing fine” because I really was, in fact, pretty much fine. A few years later when my symptoms took over and a new combination of medications threatened to take me under, people still looked at me in an earnest, concerned way. When I resurfaced, I was greeted by lots of surprised and pleased exclamations, of “You look really good.” I loved that. I could truthfully answer, “Thank you, I really FEEL good,” and be buoyed up by own sense that I really did LOOK good, too.
As my “friend who had a stroke” continued relating his story, I experienced further moments of recognition. I resonated, in particular, with Peter’s wish that early on he could have talked with someone other than doctors and medical personnel. Peter wanted to know what was going to happen to him and though no one can answer such a question for a person having a condition with an indeterminate outcome, he felt it would have helped to at least hear some personal experiences. I had felt that way, too, overwhelmed with dread about my future with Parkinson’s and just how rapidly my ultimate demise would be.
Peter called his physician and his hospital and recommended that they address that need for future stroke “victims.” He didn’t put it in those terms but people often do refer to “people with such-and-such condition” as victims of it. Peter was soon put on a newly established advisory board and he is called when someone who has had a stroke wants to hear someone else’s personal account. In addition, a poster now features Peter’s strong broad face. Superimposed on the portrait is the statement: “I am not a stroke. I am an avid fisherman.”
On my part, I started attending a Parkinson’s support group and a Parkinson’s dance class. I didn’t find a road map to my future, but I felt reassured seeing others living full lives in spite of their limitations. Eventually I joined committees and the board of our local Parkinson’s association. I help organize programs that provide information and support for people with Parkinson’s and their caregivers.
By now, 10 years into my experience of having Parkinson’s, I have become close to many others facing its challenges. I am enormously fond of the people in my monthly support group. I bask in warm feelings when I meet with my weekly Parkinson’s dance class. Sharing the burden of Parkinson’s makes it easier to live with.
It’s not so bad being in the “People with Parkinson’s” club after all. I never thought I would understand the cheerfulness of Michael J. Fox who developed Parkinson’s when he was 29 years old. In his early memoir, Fox described how his life had been enriched by his relationships with other people touched by Parkinson’s. Fox titled his memoir “Lucky Man.” To my surprise, I now feel lucky, too.