My PD Story

Once upon a time, I started noticing a slight tremor in my right hand. My husband noticed that I did not move my right arm when jogging. I also suffered from frozen shoulder(s), insomnia, constipation, anxiety and fatigue for years.

Doctors continuously told me it was menopause related. Over time, the tremor became more noticeable, and my doctor suggested I see a neurologist, just to “be safe.”

I met with a movement disorders specialist — a neurologist with specialized training in movement disorders — and on November 11, 2015, she confirmed the diagnosis of Parkinson’s disease (PD). I will never forget that day. I was devastated and frightened.

At the suggestion of the movement disorder specialist, I signed up for the local young-onset Parkinson’s disease (YOPD) support group. I went to the first meeting and cried seeing how PD affects people. I cried every time I had to tell someone about the diagnosis. I cried thinking about how life had changed. I cried all the time. Through all this turmoil, my neurologist promised me that life was not over, but I had to take control, no matter how hard it got.

So, we took control. We retired early and moved to Florida. It is here that I signed up for Rock Steady Boxing. I am a fighter and have met the most amazing people at Rock Steady Boxing. I also attend spin classes and Pilates as part of my personal goal to keep on moving! It still felt like there was more I could do to change the trajectory of my life. Yep, there sure was. Enter Parkinson’s Foundation.

I connected with the Parkinson’s Foundation through Moving Day Chicago (my hometown). When we moved to Florida, I attended Moving Day Boca Raton and Palm Beach. I signed up for PD GENEration and three other clinical studies. I attended Foundation-sponsored seminars, which is where I met Karen Lopez and became involved in the local chapter.

Today I am a Parkinson’s Foundation Ambassador, a Board Member on the Fund Development team, and I was honored to be the Chair of a successful Moving Day Palm Beach 2024. I have also been part of our Regional Grant Review team for the past two years and I sign up for every relevant clinical trial.

I really enjoy volunteering. I see it as another way to celebrate movement. I move my brain cells around; I motivate my soul to do good things; and volunteering moves forward the search for a cure. Volunteering is really the most effective way to use one’s voice. Being awarded the Parkinson’s Foundation Community Service Award is the ultimate recognition of how important it is to advocate for ourselves and others affected by PD.

PD has changed my life. I am married to a host of medications governed by a time clock, and I deal with nasty and unpredictable symptoms, and it is truly humbling! However, living with Parkinson’s is also a true blessing in that it has given me the gift of friendship, support and has shown me the way to help advocate for others.

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