BENEFITING: MICHAEL J FOX FOUNDATION FOR PARKINSONS RESEARCH
Parkinson’s Disease is a neurological disorder caused by a loss of cells in the brain that produce dopamine, a chemical used by the brain to transmit signals coordinating muscle movement. This disease is chronic and degenerative and currently, there is no cure. Parkinson's affects about one million people in the United States and five million people worldwide. 50,000 to 60,000 new patients are diagnosed every year. The disease is not easily diagnosed and its causes are not clear. Research is being conducted to determine whether genetic or environmental causes, or both, are to blame.
This disease slowly deprives the patient of muscle control, causes fatigue, short-term memory loss and a host of other problems. Absent a cure, physicians are left to treat the symptoms. Patients are prescribed complex and unique medication plans to stave off the effects of the disease. Treatment plans have their limits and the disease and its complications eventually take hold and preclude a normal life.
While the average age of diagnosis is 62, our mother was diagnosed with Parkinson’s Disease in her early fifties. At the time of her diagnosis, she had been a registered nurse for 25 years and loved what she did. She continued to work for several years until it was clear the disease was taking control. She and our father retired early to enjoy a few years traveling to some of their favorite spots in Tennessee and Florida before the effects of the disease prohibited extended periods of time away from home.
Aside from nursing and taking care of people, two of the great joys in her life have been her family and music. She has many grandchildren and several great-grandchildren and she has been an important part of their lives. The progression of her disease has meant many missed events and milestones that she would never have missed had she been healthy. Music was and is a large part of her life. She played the organ at church for most of her adult life and took great pride in the joy she brought with her music. Playing a musical instrument requires a lot of muscle dexterity and control and this also became too difficult. She has a small organ in her room and still enjoys playing for family and friends. While it is a struggle for her, she seems happiest when she is able to sit at the organ and play.
Life-changing diagnoses affect more than just the patient. They also change the lives of those closest to them. Our family has all struggled with our mother’s plight, but this story wouldn’t be complete without a nod to our father. As the primary caregiver, he has faced this disease side-by-side with our mother. He has taken over meal preparation, provided trips to medical appointments, and had many sleepless nights. As he has gotten older, this has been detrimental to his health. “In sickness and health” has never been more true.
Despite her best efforts at living a normal life, this disease has stripped her of her independence and an enjoyable and well-deserved retirement.
This has been an unhappy chapter in the story of our family and for countless others. But, it doesn’t have to stay that way. Promising research continues in the areas of genetics, environmental factors, and stem cells, as well as new therapies and treatments for those living with the disease. We urge you to explore the advancements made in the diagnosis, treatment, and possible cures for Parkinson’s Disease (www.michaeljfox.org). Thank you so much for your interest and support.