I was diagnosed with Parkinson's disease (PD) in 2013, after over a year of my symptoms being misdiagnosed. My husband and I were dumbfounded. Neither of us had anyone with Parkinson's in our families, and we knew nothing about the disease. While searching online for information about PD, I found the Parkinson's Foundation and decided to call the Helpline.
I talked to a Helpline specialist, who guided me through the Foundation’s resources and told me about a five-day workshop taking place not far from my home in Pennsylvania. My husband and I attended the workshop, and we were submerged in education, exercise, support groups and comradery. It was the best thing we could have done. I sat in on seminars led by doctors who stayed long after they were scheduled to speak, just to answer questions from attendees.
The workshop took place three months after my diagnosis. Up until this point, I had not cried. For days, tears poured out of me during these sessions — I felt this was expected, because there were boxes of tissues throughout the room. I left after five days feeling empowered by a better understanding my disease. I no longer felt alone.
My husband understood what I was going through. We came home from the workshop knowing others in our area living with Parkinson's. This was just the beginning of our journey in bringing Parkinson's awareness and resources to this corner of Pennsylvania. We started an annual 5k race that took place five years in a row, raising over $200,000 for Parkinson's research.
I became involved in clinical studies for Parkinson's research. One of these studies, which is being conducted in research centers around the world, is looking for biomarkers to diagnose and prevent PD. In 2020, I had deep brain stimulation (DBS) surgery. I continue to share my experience with DBS and serve as a resource for others considering the surgery. I also make a difference by volunteering with the Parkinson's Foundation.
My continued involvement with the PD community has helped me feel like my experience with Parkinson's happened for a reason. My journey has been made easier by my family. My husband has been by my side since we attended the workshop together. He understands my challenges. My husband, along with our three children and their spouses, were tremendously involved in the success of the 5k. The support I have been given by my family has made this journey easier.
Learn how to get involved as a Parkinson’s Foundation Ambassador.