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

Cindy Finestone does it all. The on-the-go, soon-to-be first-time grandmother serves on community boards, enjoys the challenge of cooking a Sunday feast for her three adult children with minimal warning, goes to the gym six days a week and fundraises for causes she believes in. And she does it all fighting Parkinson’s disease (PD). 

Cindy was diagnosed with Parkinson’s 10 years ago. She’s heard enough misdiagnosis stories to know she is “one of the lucky ones.” After ruling out carpel tunnel, her neurologist told her to return if she noticed a tremor or funny feeling in her hand. “A lot of times people put things off and don’t address health problems right away, making it worse. A year after my initial visit, I began trembling in one hand. It happened twice in one day, so I got it checked out,” Cindy said.

Cindy thought it was unusual that her doctor was standing at the exam room door waiting for her. She later found out he was observing her gait and whether her arm was swinging. “He asked me questions like ‘Do you notice yourself drooling?’ and ‘How is your sense of smell?’ I left with a Parkinson’s diagnosis, an Azilect® prescription and a referral for a movement disorders specialist.”

Shortly following her diagnosis, Cindy began experiencing severe cervical dystonia (sustained and repetitive muscle spasms or cramps). The pain caused her to constantly look up and had an impact on her daily life. Her movement disorders specialist started Cindy on Botox injections, every three to five months, in her neck. “Parkinson’s caused the muscles in my neck to atrophy, so I started exercising like I never had before to strengthen my body,” Cindy said.

Fast forward to 10 years later, Cindy goes to the gym six days a week, sometimes seven. Once she found Rock Steady Boxing classes, her life changed for the better. “I don’t think she knows we have Parkinson’s,” a fellow boxing student once told her during a class. Cindy wouldn’t have it any other way. She now works with the Rock Steady Boxing instructor two times a week, in addition to her four weekly group boxing and core stretching classes.

“Exercise is not just about physical health, but mental health. I believe that the more you push yourself when exercising, the better your movements will be every day,” Cindy said. “I used to exercise before being diagnosed, but nothing like now. If I don’t go to the gym, I feel like something is not right.”

Between her treatments and her Rock Steady Boxing instructor focusing on strengthening her neck muscles (one of which was making her hold a tennis ball under her chin) Cindy’s dystonia dramatically improved. She was feeling better and ready to get involved in the PD community.

Community engagement is nothing new for Cindy. She grew up with parents who valued volunteering, she was a classroom mom, PTA leader and served on numerous local boards. She eventually found the Parkinson’s Foundation walk, Moving Day Rochester, NY. “I didn’t ask anyone to go with me. I didn’t feel comfortable asking people for money. I went by myself for years.”

One day her son’s teacher was diagnosed with Parkinson’s, and he asked Cindy if she had heard of Moving Day. He could not believe his mom had been attending alone and insisted on not only going with her, but helping her team. Rock Steady Boxing Flower City was launched, and Cindy went into planning mode. She created jewelry and T-shirts to raise funds, along with her first Facebook account and page — and raised $5,000 in four weeks.   

Cindy eventually applied and was selected to serve on the Parkinson’s Foundation People with Parkinson's Advisory Council, a group of dedicated people in the PD community who advise and collaborate with the organization on a volunteer basis. She is also president elect and serves on the board of the Parkinson’s Foundation New York New Jersey Chapter.

“Being involved in the Parkinson’s Foundation makes me feel like I’m doing something that’s helping. Everything I do is somehow related to the Foundation. I attend a PD support group of 60 women, some of whom have become my closest friends—and I found this group through the Foundation. I call the Helpline for referrals. I go on Parkinson.org every time I feel a new symptom coming."

Cindy often gets asked about Parkinson’s because of the Parkinson’s Foundation lanyard she wears for her keys. She doesn’t shy away from hard topics and always advocates for finding your community, volunteering, and exercising. 

“Somedays Parkinson’s is more emotional than physical. You just don’t want to exercise; you want to get off the ‘train.’ But then I start thinking ‘What am I going to stay home for?’ You can modify everything you do based on how you feel,” Cindy said.

Cindy considers living with Parkinson’s to be a non-stop job. She even tailors her hobbies to find activities that can help with symptom management. While she notices that Parkinson’s has slowed her down, especially in the morning, she doesn’t let it stop her from living life. “I love being outside, golfing, and taking brisk walks. I play mahjong, do pottery and knitting classes — classes that can help in fine motor skills. I love cooking and spending time in my craft room, but volunteering is what keeps me busy, it keeps me aware.” 

This April, help the Parkinson’s Foundation advocate for Parkinson’s Awareness Month. Learn More.