Two years ago my father died with HD - until then we had never heard of the disease, though looking over generations of our family we have lived with it for a long time. It was a relief for me in a way, as it explained the things that had been happening to me for a couple of years.
Two months after my father died my sister and I tested positive. There are five of us "kids" - two positives, 1 negative and 2 at risk and probably symptomatic. Not good stats I'm afraid. Between us we have 6 children at risk. Children are our greatest joys, and for pHDs our greatest sorrows. My children mean more to me than life and I pray daily for a cure for them and I strongly believe there will be help for them.
About 4-5 years ago I began to notice changes in my attention span, difficulty sequencing tasks, I would forget mid-sentence what I was saying or not be able to form the words in my mouth. I was working at the time as a machinist/finisher in an anesthesia machine plant and totally bewildered by the mistakes I was being accused of making because they were mistakes I KNEW I would never make... I was a good machinist and took so much pride in my work. I would dissolve into tears every time I tried to defend myself.
Driving home from work I would get lost on a course I had driven for years and embarrass myself by blurting things out loud. When a chance to take a voluntary layoff came around I took it. We sure couldn't afford it, and I know my husband was amazed by this action, but it was the best move I ever made in the long run. Bless his heart for not questioning me and for standing by me. Things were much better for me with the stress of working gone.
I run our small farm, homeschool our children, and love making my own schedule, but I am slowing up again. Household chores are becoming hard to complete, I'm irritable, I have some difficulty sleeping and experience night terrors. I have little chorea, but have developed some head shaking, random hand and arm movements and a tendency to veer sideways when walking, mostly when I am tired.
Well, the point of all this is to let you know I understand and I think we have much in common. I would love to hear from you if you feel like writing and I want to welcome you to the list. Keep your head up and hang in there, you're not alone.
Created and maintained by Renette Davis. Send comments for Renette to: rd13@midway.uchicago.edu and comments for Deb to pinewood4@tds.net
Created: Oct. 23, 1999
Last updated: May 26, 2003
Return to: What Huntington's Disease is Like for Me