## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) # My PD Story ![Sumedha and his daughter](/sites/default/files/styles/470x550/public/images/Sumedha_Jarayaman.jpg?h=c9aea1bc&itok=lkg3g4xR) Family Members ## 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](/living-with-parkinsons/management/diet-nutrition "Diet & Nutrition"), 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](/understanding-parkinsons/movement-symptoms/tremor "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](/living-with-parkinsons/finding-care/building-your-team "Building Your Care Team") 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](/understanding-parkinsons/movement-symptoms/rigidity "Rigidity") 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](/understanding-parkinsons/causes "Causes") and [treatment](/living-with-parkinsons/treatment "Treatment") for this disease. The doctor prescribed my grandfather [dopamine medication](/living-with-parkinsons/treatment/prescription-medications/dopamine-antagonists "Dopamine Agonists") 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](/living-with-parkinsons/treatment/exercise "Exercise"). 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](/understanding-parkinsons/movement-symptoms/trouble-moving "Trouble Moving or Walking") and [emotional assistance](/understanding-parkinsons/non-movement-symptoms/depression "Depression") for people with Parkinson’s and shared it with PD [support groups](/your-area "In Your Area"), 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. ![Sumedha and daughter playing the Veena](/sites/default/files/styles/no_sizing/public/images/Sumedha_Jarayaman-Veena.png?itok=ZTws1GwL) 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**](/how-to-help/volunteer "Volunteer")**.** ## Related Materials Fact Sheets ### [ Pain in Parkinson's Disease ](/library/fact-sheets/pain) [Read Now](/library/fact-sheets/pain) Fact Sheets ### [ Occupational Therapy & Parkinson's ](/library/fact-sheets/occupational-therapy) [Read Now](/library/fact-sheets/occupational-therapy) Fact Sheets ### [ Managing "Off" Time in Parkinson's ](/library/fact-sheets/managing-off-time) [Read Now](/library/fact-sheets/managing-off-time) ## More Stories from the Parkinson's community ![Anika Ganu performing on a keyboard](/sites/default/files/styles/340x400/public/images/anika-ganu-pd-story-hero.png?h=c9aea1bc&itok=d6Nv7YCl) Family Members ### [ Anika Ganu ](/living-with-parkinsons/stories/anika-ganu) READ NOW ![Christine Shearman and her father](/sites/default/files/styles/340x400/public/images/Christine-Shearman-father.jpg?h=c9aea1bc&itok=-SGVTDQ5) Family Members ### [ Christine Shearman ](/living-with-parkinsons/stories/christine-shearman) READ NOW ![Epin Christensen running](/sites/default/files/styles/340x400/public/images/Epin%20Christensen.png?h=c9aea1bc&itok=T0wG6Wrd) Family Members ### [ Epin Christensen ](/living-with-parkinsons/stories/epin-christensen) READ NOW [VIEW ALL STORIES](/living-with-parkinsons/stories) ### Share your Story Do you have an experience with Parkinson's that you would like to share? [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) ### Celebrate a Loved One Start a tribute page in honor of a loved one living with Parkinson’s or celebrate their legacy by creating a memorial fundraiser. [START A TRIBUTE PAGE](https://secure3.convio.net/prkorg/site/TR?fr_id=5906&pg=entry) - Share on Facebook - Share on X - Share on LinkedIn