A year and a half ago, I found out that I carry the gene for Huntington’s disease. This gene was passed to me from my dad, who died from the disease 5 months later. It’s kind of like combining the mental deterioration of Alzheimer’s with the physical symptoms of Parkinson’s. The first signs we noticed with my dad were personality changes. He developed strange movements and balance issues. He lost his ability to reason and problem solve, which cost him his license and job when he was 51. Most people decide not to get tested before they develop symptoms because you only want to know your future if it’s GOOD. I felt like getting tested was a way to snatch a little bit of control from the disease.
I’ve decided that I don’t just want to wait around worrying about when I will get sick. There’s still a lot of fun to be had. It’s also important to me to feel like I’m actually doing something, so I’ve decided to do a Team Hope walk for the Huntington’s Disease Society of America. They raise money not only for research (which, let’s be honest, might be too late for me), but also to fight for legislation (so people like me with a “pre-existing condition” don’t lose health care insurance) and to help support families and caregivers of people who are sick (like my mom who had to take care of my dad for 20 years and my sisters, who will presumably have to keep me in Depends). If anyone wants to participate in the walk or donate money, it would be really awesome.
I’m not asking for sympathy, but I am asking for money!