16 Years After Parkinson's Diagnosis, Reflecting on the Positive

I was diagnosed with Parkinson's disease in 2002 at the age of 29. That was 16 years ago.

The first symptom I noticed was a tremor in my right hand. My primary care doctor diagnosed it as carpal tunnel. About 6 months later, when the tremor started in my right leg, I began to doubt the original diagnosis. I was fortunate to have a sister who worked on a Neurosurgery floor and, upon learning about my symptoms, the doctors suggested I make an appointment with a Movement Disorder Specialist. I never expected to leave that appointment with a diagnosis of Parkinson’s disease at such a young age.

After starting medications, my symptoms were well controlled. I did not feel the need tell anyone except my immediate family. Over the course of the next 10 years, I told very few people and kept most the things that were changing with my body and mind to myself. It seemed easier to hide the disease and get on with my life.

Advice to my 30-something self

I have been fortunate that my Parkinson’s has progressed slowly. My mantra became “it will never get the best of me” and it hasn’t (it has certainly given me a run for my money). But in looking at it that way, I wasn’t prepared for the eventual bumps in the road. I tried to mentally control a disease that can't be controlled. Feelings of anxiety, frustration and isolation built– which is normal for someone dealing with a progressive disease. I didn’t know that. If I could go back and give a piece of advice to my 30-something self, it would be to find a therapist, a support group, a community who understands from day one…find a way to cope.

After working for 10 years with PD, I had to “retire” due to disease progression and severe medication side effects. That was a huge loss for me. I hadn’t planned on needing to rethink my life at 39. I have since started two young onset support groups that helped me to find friends who understand me and a new purpose – helping others to live better with PD.

It takes a village

I recently read a blog written by Sheryl Jedlinski and Jean Burns on their website pdplan4life.com that I really identified with. Here are some excerpts:

"It seems a lifetime ago when I arrived on the Parkinson's scene fearful of what the future held for me, and hungry for whatever knowledge, coping strategies and experiences others with Parkinson's were willing to share. At some point when I wasn't looking, I became an "old timer" myself — teaching newbies, as others had taught me, to face this progressive disease that has no known cure with courage and grace — giving them the confidence to try new things, as well as ol, things, in different ways."

They talk about their friends, relatives, doctors and therapists who have helped them to live well with Parkinson's disease for so many years. "It takes a village to achieve this, and these are my 'village people'."

"Instead of allowing Parkinson's to limit what we could do, we found new purpose for our lives, did things we never dreamed of doing and forged friendships that have withstood the test of time and chronic illness. Accomplishing things we think we cannot do, gives us renewed strength and courage to keep fighting."

Why I got involved

That is why I get involved in the Parkinson’s community. The friends. The ability to help others the way they have helped me. The support it provides to my family. To be part of a community that can really make a difference.

The last 16 years have not been without its challenges, but it has also been very rewarding. I have accomplished a lot despite PD. I have 5 patents, married a wonderful man, traveled extensively and started two support groups. I have also learned how to better advocate for myself and others and have met fellow people with Parkinson’s that have become lifelong friends.

In April 2016, I had DBS surgery. It, again, was not without challenges, but it has improved my quality of life. That’s really what the medications, the doctors’ appointments, the struggle each and every one of us endures every day are really about– to improve our quality of life.

To quote Davis Phinney, Olympic bronze medalist and founder of the Davis Phinney Foundation, “We can’t control that we have Parkinson’s, but we can control how we choose to live with it.”

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