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.
The group for newly diagnosed Parkinson's patients continues to be a success story. I am forging ahead with a proposed regular date and time, and several participants have said they are looking forward to continuing the group. I also was contacted by a local physical therapist who has two newly diagnosed patients interested in joining a group. I never thought I would be in a leadership role, but this is one gift that Parkinson's has given me.
When I was a young mom, I did some volunteer work, but it was always behind the scenes. I have always been an introvert, and I was never interested in being a leader. When Parkinson's came my way, I was just 39 years old, I felt the family's attention would all be on me -- the one with the chronic illness -- and that made me uncomfortable. But I learned as much as I could about Parkinson's, and as a librarian by training with abundant research skills, I soon became a fountain of information about PD.
I stepped up my exercise program about 9 years into my disease, and I found myself sharing with anyone who would listen that exercise can help their PD. I spoke up to get the word out there. Then I was asked to speak about or even demonstrate some exercises at events such as the Sunflower Revolution and Spring Forum. People told me how much they appreciated such appearances. When I heard about the Dance for PD program, it intrigued me, and I was disappointed to learn that no one had brought the program to Cincinnati.
Eventually I began to realize that my experience was worth something and that sharing that experience and knowledge with others could be helpful. I could actually make a difference. Feeling bold with this discovery I decided to try to bring the Dance for PD program here myself. So to make a long story short, I did!
Dancing with Parkinson’s Cincinnati meets weekly on Wednesdays. Learn more here.
This photo was taken before the Covid-19 pandemic. Now, masks are worn and social distancing is upheld between participants who are not from the same household.
Empowered by the warm acceptance of my efforts, I have continued to lead in several ways. I lead one support group, have now started two more support groups, initiated the person-to-person program (now integrated into the Basics) and am now the Vice Chair of the Parkinson Support and Wellness Board. My latest effort was the Beyond the Basics program that has become a support group for the newly diagnosed. I do not share this information with you to toot my own horn, but rather to encourage you to realize that you too can make a difference by sharing your experience, or by stepping forward when leaders are needed. Even we introverts can give some of our time to help others with PD. The feeling of my efforts helping others is a gift that PD has given me.