Recently, exhaustion ties me into bed each morning even after Mom rings. As a matter of fact, I don’t even hear the little bell at all. Even once I pull myself out of slumber, my body aches won’t let me do much more than lie on my back and test my muscles. The process involves wiggling my toes and rotating my ankles. If pain doesn’t accompany these tests, I move up to my legs, anticipating the bone deep tenderness. On good days, I progress to my arms and hands, checking them for tingling and discomfort. By this time, I move to the edge of the bed to put weight on my feet. If the floor feels like gravel, I hobble into the other room with determination. Usually by the time I reach the family room, the floor evens out.
I haven’t made a doctor’s appointment to begin the process of discovering the reason for my morning soreness. Right now, it presents a little inconvenience in the mornings and dissipates like a mist once I force myself into motion. My sister suffers with Fibromyalgia, and she suspects I have the same problem. If the symptoms persist, I suppose I’ll have to try for a diagnosis. As I spend quite a bit of time taking my mother to her various doctors, I dread having to spend any additional time in waiting rooms!
Always, in the back of my mind, runs the worry that any changes I note in my body or mind may signal the first symptoms of Huntington’s Disease. I can have genetic tests done, but I decided there’s more hope in not knowing. Without testing, I have a 50% chance of being HD free. With testing, I could learn that the CAG repeats skipped me—that I’m definitely free of HD. Wonderful news, of course. The flip side of the genetic testing would be that I do carry the disease. At this point in my life, I don’t want that particular 100% certainty. Being an optimist, I tend to amble through my days with the belief that I don’t carry the disease. In my case, ignorance is bliss!
People who know me well probably find my decision not to run the genetic tests puzzling. The motto “Hope for the best, but prepare for the worst” has guided many of my life decisions in the past. By clinging to the hope of being HD free, my behavior may not reflect preparing for the worst. However, I took out long term care insurance before I turned fifty, locking in at a pretty decent rate. I can, with a clear conscience, put on any insurance applications that I am disease free since I show no symptoms. My siblings have elected to take a wait-and-see approach as well. Maybe we dance with denial, but as long as each of us remains symptom free, this seems the best approach. We focus on the challenges that Mom faces and set aside the possibility of dealing with HD within our own generation.
Copyright 2011 Elizabeth Abrams Chapman