My PD Story

For having lived with Parkinson’s disease (PD) for many years, I had no answer to the question of how I got this disease. No family members had Parkinson’s. I didn’t even know friends, neighbors, nor work associates with Parkinson’s. Here’s my story.

Around 31, a tremor started in my right arm — I was diagnosed with essential tremor. Additional symptoms appeared over the next 12 years. Symptoms were treated as individual issues and my life went on with a hand in my pocket, to hide the tremor. 

At 40, one morning I was met with a poison ivy rash on my arm. Benadryl was taken to dry up the rash. Family members observed improvements in certain PD symptoms during this time. Without knowing, Benadryl was my first treatment for PD.

My gait started to change when I turned 42. At my sister’s wedding reception, the band started to play polka and I gestured to my mom, let’s go. However, my feet were not cooperating with the requirements of the dance. My feet were glued to the floor (now I know this is called a freezing episode). That was not dancing the polka. 

The poison ivy and polka incidents motivated me to see a doctor for a second time. This resulted in my official diagnosis. At 42, I was diagnosed with PD.

The next 18 years involved treating my symptoms and living a normal life. My PD was progressing very slowly and life was good. At 60, I woke up one day and decided it was time to retire.

I jumped right into retirement and my physical activity increased without an understanding of my limits. The result was a rotator cuff tear in my shoulder, which required surgery. Activities were very limited during recovery. I joined the Parkinson’s Foundation as a volunteer to get off the couch.

I participated in PD GENEration: Mapping the Future of Parkinson’s Disease initiative. Roughly six weeks after submitting my genetics tests, my report from the lab detailed that the cause of my Parkinson’s was genetic. My question of “How did I get this disease?” was finally answered. This means that my initial tremor was likely misdiagnosed. 

There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.

My duties as an ambassador include tabling at conferences, helping at our symposium, helping with site reviews, and reporting on grant recipients, and presenting “PD 101” in the community. I increased my duties to become the Chair of the Georgia Chapter Mission & Outreach Committee where my leadership qualities are used to define roadmaps and subcommittees, and track progress for the chapter.

Over the years, every Thanksgiving I am thankful for poison ivy, the polka, and a torn rotator cuff. These were the important events that helped me gain clarity of my past and find a sense of purpose for the future.

Explore the many ways to volunteer with the Parkinson’s Foundation. Fill out our volunteer interest form today