What has your journey with Parkinson’s been like since your diagnosis?
I was diagnosed in the spring of 2014. Very quickly, I made the decision to try to be the ‘poster child’ for Parkinson’s. I was still working full-time as a college professor of Computer Science and decided to retire in May 2015. During that first-year post-diagnosis, I started a small support group in my local senior center and began taking many exercise classes. My support group has grown throughout the past seven years with an average of 25-50 people attending either in person or on zoom.
I love the sense of family that I get when we have a meeting and are able to learn from a guest speaker, socialize, and share with one another what is on our minds. My journey with Parkinson’s has been focused on exercise, education regarding Parkinson’s, support for one another, and realizing that optimism is a choice. I also started a monthly virtual support group for care partners in 2021. I am grateful to the Davis Phinney Foundation and Connie Carpenter Phinney for giving me the idea. I found a local physician assistant working in neurology at Yale who has agreed to moderate the meetings. The meetings have been very well received and appreciated by those in attendance.
How do you live well with Parkinson’s?
I exercise every day, and I am optimistic about what the day will bring. I either take an in-person exercise class, take a zoom class, do random exercises in the house, or go for a walk.
what do you wish you had known when you were diagnosed with parkinson’s?
I wish I had known the importance of seeing a movement disorder specialist (MDS). The first neurologist I saw was not, and it took me several months to find one that I felt comfortable with. I didn’t know a lot about Parkinson’s. That was one of the reasons I started a support group and invited local doctors to speak on different aspects of Parkinson’s.
What do you wish everyone living with Parkinson’s knew about living well?
Attitude is Everything! Keep it Positive. You are not alone! Find a support group, and if you don’t feel comfortable at first, go again or try a different one. Find an exercise class you like so you’ll be sure to go more often. I like classes with music because music makes me happy, and I feel like dancing!
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Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®. Your story, like Allyson’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.
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Thank you to Supernus for sponsoring Moments of Victory posts in 2022 that highlight our Ambassadors.