Thursday, January 16, 2014
I Run Because She Can't
My new Nike+ band came today! I haven't used if enough tonight to give a fair review... So more to come. Instead, with a race just two days away, I put on my Care to Cure necklace, that I always wear during races, along with Huntingtons Disease blue Care to Cure band, it doesn't mean a thing to anyone else but it means something to me. I run, and I continue to run because of my Grandma Penny. She died at the age of 62 from Huntingtons Disease. Most everyone has never heard of it, and likely because you don't know a family riddled with it. Huntingtons Disease is a genetic disease, my maternal grandmother had it. There is a 50/50 chance that my mom has it, if she does have it, there is a 50/50 chance My sister or I could have it. If my mom does not have it, there is 0 chance my sister or I have it. If I had it, it would not mean my sister necessarily would, she's got her own 50/50 chance. The disease itself is much like a cross between early onset progressive dementia and Parkinson's. The earliest symptoms are often subtle problems with mood or cognition. A general lack of coordination and an unsteady gait often follows. As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioral and psychiatric problems. Physical abilities are gradually impeded until coordinated movement becomes very difficult. Mental abilities generally decline into dementia. Complications such as pneumonia, heart disease, and physical injury from falls reduce life expectancy to around twenty years after symptoms begin. My grandmother was diagnosed at 52. There is no cure and no treatment to slow progress, just treat symptoms. There is a test, to find out if you have the disease, but it's a very personal decision for everyone in my family. I have an aunt that has been tested, she does not carry the bad gene, therefore her daughter and two grandchildren do not have any risk of being a carrier. No one else in my family has been tested. When we were at the genetic counselor appointment just after her diagnosis I remember her saying, "the stronger and healthier you go into this disease the better off you are".