Sumedha Jayaraman

My grandfather S. Jayaraman used to be one of the healthiest people I knew. He had an excellent daily routine, great food habits, never took any medication, was full of youthful energy, and inspired many. He would play the instrument he loved like no other, the Veena — the national instrument of India beautifully demonstrating the astonishing dexterity of his fingers.

When he was 73 years old, in the summer of 2021, during one of our walks around the community I noticed he slowed down a little and I also observed a tremor in his right hand. A bit perplexed, I returned home and shared this with my parents. The family was not clear as to what was going on.

My dad decided to get to the bottom of this. The doctor arranged for a series of blood work diagnostics, and we were referred to a neurologist in Hamilton, New Jersey. After seeing my grandfather over a couple of visits, the doctor confirmed that my grandpa had developed Parkinson’s disease (PD). He started becoming inflexible so he could no longer play the Veena freely. I was shocked, as he has been my music teacher ever since I can remember.

Our family had no background in Parkinson’s, let alone knowledge of the potential causes and treatment for this disease. The doctor prescribed my grandfather dopamine medication that he needed to take regularly for the rest of his life. Everything was so obscure. But one thing the doctor said during our visit stuck with me: grandpa’s Parkinson’s disease could be controlled by regular tailored physical exercises.

Armed with this insight, my family decided to invest at least one hour every day with my grandpa to help him move. My dad, my mom, my younger sister, and I would take turns exercising with him. We came up with an exercise schedule. I would also create writing assignments for him every day. We could see that the regular exercises were helping him to move more freely.

With my pocket money, I bought him a leg strap so he could do his leg stretches, a stress ball for his hand, a whistle for his vocal muscles, a specialized pen, a timer, and a journal to help schedule and track each activity.

The regular exercise routine and the intergenerational bonding we established through these activities greatly helped my grandpa. By the fall of 2021, we saw a noticeable change. Our musical lessons restarted, and my happiness knew no bounds. Encouraged by the progress my grandpa was showing, I decided to help more people with Parkinson’s. I designed a kit containing exercise resources that I wanted to share with fighters like my grandpa in the New Jersey and Pennsylvania region.

I did not know exactly how I would reach these fighters and bring about awareness of exercise. I created a presentation about mobility and emotional assistance for people with Parkinson’s and shared it with PD support groups, physicians, and rehabilitation centers. I was moved by the number of people who wanted to support my idea. I was encouraged to start a youth-run non-profit organization. During the Christmas break of 2021, I founded Act MoveHope to care for Parkinson’s disease fighters.

I raised funds by performing Veena music concerts, which I used to distribute mobility kits and personalized handwritten cards to 20+ fighters in partnership with Rock Steady Boxing New Jersey. The greatest gift has been receiving “thank you” phone calls and notes from the people who use the kits.

The Parkinson’s Foundation has provided encouragement throughout this year, and I am thankful for their support in sharing my story to benefit more PD fighters. There is hope for people living with PD through action and movement. I am happy to work with the Parkinson’s Foundation to continue the fight against Parkinson’s.

Want to make a difference in your local PD community? Become a Parkinson’s Foundation volunteer.