CHAMPs > Parkinson's CHAMP
January 2014 - Buddy's Team
About twenty years ago, my mom noticed a tremor in my father’s pinky when he would hold her hand in the evening. She was concerned. She was scared. She knew first-hand the ravages of Parkinson’s disease. Many years earlier, she had helped to care for my father’s father who had suffered from Parkinson’s. I remember my grandfather, sitting stiff as a board with the masked face of Parkinson’s in his big leather easy chair. He said very little – stiff and quiet, he was always just sitting in that chair. That is my most vivid memory of him. At times a smile could be coaxed out of him either by his grandchildren or a familiar memory.
At my mother’s insistence, my father saw a neurologist who made the diagnosis of Parkinson’s in about five minutes. “Your father has all the classic signs and symptoms of Parkinson’s”, he told me. He was about 65 years old at the time. Wow! How could we have not noticed his symptoms? Only my mother noticed that tiny little tremor in his pinky. What a blow to be handed this diagnosis, knowing first-hand the inevitable end. We had been told that Parkinson’s wasn’t hereditary. Now we know that genetics does play a significant role in the development of Parkinson’s in certain people.
Over the last twenty years, my father’s life has slowly been taken from him. He had been a lawyer, an avid reader, a pianist, a singer, a handball player, the family’s personal chauffeur, a father and husband, and loving caretaker of both his and my mother’s parents. My father can no longer do so many of the things he so enjoyed. Even from the earliest time of the diagnosis, the simplest everyday tasks became difficult. Tasks like buttoning his shirt or keeping his balance. He had falls, lost the ability to drive, could no longer travel without assistance, and then the dementia set in. There were so many different medications, all with their adverse side effects. There were so many complications, so much frustration. As time went on, it became more difficult for him to complete a thought, to take a few steps, to get food onto a fork and then get that fork into his mouth – all of these things became so difficult. And it is so difficult to watch your loved one change in this way.
I began to wonder why we can’t do more to treat Parkinson’s disease in the 21st century. Why can’t we do something to cure this horrible disease? Why haven’t we found a way to prevent Parkinson’s, to improve the quality of life for people living with this disease? Yes there are new drugs being developed, new delivery systems, other treatment options, but better treatments and ways to slow or halt the disease progression are not being found quickly enough. All of us need to do whatever we can to drive the research machine, to keep Parkinson’s front and foremost in the minds of our legislators, scientists, and doctors. We all must do whatever we can to get answers in our lifetime.
And that is why we walk. We walk for my father because he can’t anymore. We walk in solidarity with other Parkinson’s patients and their families and friends. We walk so that we can feel empowered. My children, my nieces, and nephews walk to help grandpa, however they can. We are proud to hold our posters high. We are Buddy’s Team and we want to make a difference for my father and every other family that is living with Parkinson’s disease. And make no mistake about it, it is families that live with Parkinson’s - husbands and wives, brothers and sisters, sons and daughters, grandchildren, nieces and nephews and cousins and friends. Parkinson’s touches all of our lives and we won’t stop walking until a cure is found.
I was with my father last night. I said, “Dad, how are you, it’s Dahna.” He squeezed my hand. I said, “Dad, I am telling your story for the Parkinson’s Unity Walk. Perhaps your story will motivate more people to donate funds for Parkinson’s research.” And that coaxed a smile out of him. And so we walk!