Huntington's Disease Society of America
Huntington's disease wasn't something I had ever been aware of. Maybe I'd heard the name, or saw a story on TV about it, but I never paid attention and never knew what it was. It's remarkable to me now to look back on my life and to think that there was a time when HD didn't consume my family. But that's way the it was for us. For 33 years, I got to live live not knowing what HD was.
I knew my Dad was sick with a movement disorder, but nobody seemed too concerned about it. And the meds seemed to be helping. I was living in LA. I had an amazing life that always seemed to bring some new and unexpected opportunity that wouldn't come up anywhere else in the world. It was a great time for me. I happened to be working at a charity that had access to amazing neurologists when my Mom called me one day to tell me that my Dad couldn't move his legs and that he was stuck in bed. I was stunned. I had no idea that he was that bad off. I immediately got on the phone and got the name of the best neurologist in my parent's neighborhood. A few weeks later I learned about HD. I learned that I had a 50/50 chance of inheriting, and so did my two brothers. I learned that my Dad was going to progressively decline and ultimately die of HD. I learned that there was no cure and no treatment. And I learned that I wasn't as strong as I thought I was.
In the next few months I descended into a spiral of depression. I drank every night - which surprised me because I didn't think I was that person. Eventually I sought help, met with a therapist, and made the decision to get tested. I knew I couldn't live without knowing if I would be affected. The day I found out I was negative for HD I cried for hours - relieved that I could be there for my family. I moved home and for the next 3 years I helped my Mom take care of my Dad. In 2008 he died. That was right around the same time that I realized my brother had the disease.
It took me another two years to grieve my Dad and to deal with my brother's diagnosis. But when I came out on the other side of it I realized two things. The first is that this is my life. I don't get to choose to not have HD in my family. I can either be sad and angry and resist the reality. Or I can accept it and learn to appreciate today with my brother while I have I time with him. The second was that I may not be able to do research, I won't find the cure, and I won't solve this on my own. But I am unbelievably lucky to not have the gene and I am able bodied. And I can use what I DO have to make a difference. So I began volunteering at HDSA. I run the 1/2 marathon and raise money. I raise awareness by public speaking and recruiting and educating other volunteers. And what I believe is this. There is hope, and I want to be part of that hope.