Written by Karen Jaffe, MD and person living with Parkinson’s
You would think that being a physician would have given me a leg up in knowing what to do after I was diagnosed with Parkinson’s. The truth is…it didn’t.
I was 48 years old and knew no one else with this diagnosis. In fact, it was a full year before I met anyone else walking in these Parkinson’s shoes.
I now know that I was not the only one being told early on to think twice about attending a support group. The notion that seeing people more symptomatic than me could be unsettling was a warning I took seriously. In hindsight, this was a missed opportunity for community.
Going at it alone only added to the stigma attached to Parkinson’s that keeps many of us silent. With the constant worry about getting worse and thus, being found out, it wasn’t long before I had (in my head) become the person with Parkinson’s who happened to be a physician, instead of the physician who happened to be a person with Parkinson’s.
With the support of my family, in time I let go of my Parkinson’s secret and began to engage with others in the Parkinson’s community. One of my greatest strengths as a physician was my ability to listen and offer guidance. As I began to do this for other newly diagnosed people with Parkinson’s, I discovered my inbox was suddenly full of people whose stories were identical to mine: scared and alone, often keeping their diagnosis secret and knowing no one else that was with living with Parkinson’s. Many were not sure what to ask their physician. Almost everyone wanted to know what I was doing to stay well. Looking back, I see now that these conversations were the spark for my dream of opening a center to help people to live well with Parkinson’s.
Propelled by the easing of symptoms that exercise gave me, my recommendation for others was for robust activity whenever possible. But for most people, especially those who were not avid exercisers, the lack of organized exercise programs specifically designed for people with Parkinson’s proved to be a barrier. I had a hunch that what people were looking for did not exist: a place where there was no stigma; a place that defined community.
In 2013, I joined forces with four other like-minded people in my hometown of Cleveland: my founding partners, Allan Goldberg, Lee Handel, Dr. David Riley and Ben Rossi, to begin the design and implementation of InMotion, a wellness center for people with Parkinson’s.
InMotion provides our local community of people with Parkinson’s and other movement disorders a place to turn for physical, emotional and spiritual support where the stigma of Parkinson’s is left at the door, and everyone is encouraged to take charge of their well-being. The center offers a variety of exercise classes such as dance, cycling and boxing, to name just a few of the activities that help clients strengthen their bodies. InMotion also has art and music therapy, as well as a drumming circle to soothe the mind and spirit. A peer program and separate support groups for people living with Parkinson’s and their care partners complement the classes. InMotion also hosts expert presentations to help bring the latest movement disorder research and news to light.
The wellness center provides a common ground along with fresh energy and hope, which reinvigorates entire families. Every day, many newly diagnosed people that have not even thought about exercising in years enter our circle of support, creating new friendships and building community.
We face this disease together, with grit and determination. We sweat, we sing, we laugh, and occasionally, we even have to help each other up off the floor. What makes this group so special is that we know that it is working. The impact is evident in our improved outlooks, better health and more knowledgeable and invigorated Parkinson’s community.
Tell Your Story
Perhaps hearing my story has you thinking how you, too, might become a Parkinson’s advocate, or as Davis Phinney likes to say, “doing it for the Tribe.”
In my experience, the Parkinson’s community is one that knows how to roll up their sleeves to get things done. There are many things within your reach if you feel inspired to try. I have friends who started support groups where none previously existed. Groups bring many voices to the table and from there, ideas become reality. There are a growing number of specialized Parkinson’s exercise programs to choose from, some of the more widely known including: PWR4Life, Dance for PD, Rock Steady Boxing, Pedaling for Parkinson’s and Delay the Disease. Consider bringing an existing program in your area, and expand offerings as interest grows. I know many people who have been given space for their Parkinson’s classes at the local Y, in boxing gyms and in community centers simply because they asked. It turns out that folks can be quite generous.
My best advice for how to begin making a difference in your community is this: share your story. Almost everyone knows someone that is living with Parkinson’s, many of whom are looking for someone to talk to. Be the one who starts the dialogue in your community, and that might lead to something bigger than yourself.
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I am a retired RN and I kept saying it was muscle strain from lifting weights at the gym or an old injury from my 38 year career. When the neurologist told me definitively that I had Parkinson’s, it was a bit of a shock but my faith in a loving God kicked in as He has never taken me where He cannot keep me. As I walked out of the neurologist’s office, I knew I needed to go somewhere to process what I had been told. I went to my son’s only to find no one home. I had a sandwich and a cup of tea and sat there processing again what I was told. Fears crowded in on me as I began to think of the patients I had who had had PD. So I thought to myself ” You can either give in to fear or you can find out as much as you can about PD. Knowledge is ammunition.” So as I made the 140 KM drive back home I prayed and reprocessed. As I readied myself for a meeting that night, I messaged my close friends what had transpired. My friend, Janice called me immediately and offered to make the 130 KM trek to my place. She knew what was going through my head and she helped me to get some perspective. The patients I usually saw were end stage and most had had PD for many years. Breaking the news to my husband and adult children as well as my siblings was another hurdle I had to jump. It was hardest to hear my 35 year old daughter cry and know that there was really very little I could do to comfort her fears. I made all my family promise that they would NOT go on the Internet and get on all the nutty sites which give nothing but doom and gloom messages. They could go on Parkinson’s Foundation and Mayo Clinic and only sites I approved of. My friend attended a Union meeting and the guest speak was a nurse who has PD and he recommended the Davis Phinney Foundation website. It has been a wealth of information for everyone.
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