American Parkinson Disease Association, Washington Chapter

By Tami (Gustafson) Horiuchi

My father was diagnosed with Parkinson's disease in 1977. As his 11-year-old daughter, I was not immediately informed of his condition, but knew that something was wrong. I harbored all sorts of secret visions of what might ail my father - the scariest one being some quick-spreading cancer. When my parents told me Dad had PD, I was so relieved - Dad wasn't going to die. What followed was a sense of worry and confusion over just what PD was and an absolutely unquenchable desire for information. At that time, there was very little written about PD, and what was published was either not available at our local library or written in very technical terms. Through library research, pamphlets from APDA, and talking with my parents and our general physician, I gained a fairly thorough understanding of the disease. In high school I did further research, which I parlayed into an independent science project. Throughout all this information seeking, I experienced a wide range of emotions: fear, worry, anger, sadness, frustration, and, eventually, acceptance. For an adult, these emotions are confusing and confounding; for an adolescent, they were almost overwhelming. The combination of normal teenage emotions and anger at the unfairness of it all led to much soul searching and some fairly passionate displays I'd just as soon forget.

As I've grown and my father's disease has progressed (thankfully, not as rapidly as is often the case), a mixture of those feelings has endured and new feelings have emerged as well. I've always been proud of my father for his generosity and drive. What strikes me now is an immense admiration for his zeal for life and his refusal to give in to the debilitating effects of his disease. Dad hasn't yet turned down an invitation to a public function, he still attends every clarinet concert I perform in, and he never fails to volunteer his help with any project. More than once I have returned home in the past year to find my father perched atop my roof cleaning the gutters (how many times have I told him that he shouldn't be up there?) or working on some other home project I just haven't had time to start. My 3-year-old daughter is close to her Grandpa and loves him very much. For me, that love brings great joy and a bit of sadness - I'm so happy that my father has the chance to be a part of my daughter's life, yet I'm intensely sad that she will be acquainted with the energetic, vibrant man I once knew only through my reminiscing. Another dawning emotion is an enormous respect for my mother in her role as my father's primary caregiver. She is truly devoted to my father and attends to his every need lovingly while still managing to pursue her own interests and friendships. I still harbor those feelings of sadness and concern about my father's condition, and I only hope that I can be half as helpful and strong as my parents have been when they begin to need more of my assistance. My father has PD and it's a terrible thing, but my parents are amazing people and PD has given me an opportunity to see just how special they truly are.