What Huntington's Disease is Like for Me

By Deb Baker

This was originally a message posted to hunt-dis, the online support group for Huntington's Disease. It has been added to this website with permission from Deb. For more information on hunt-dis, see Mailing List for Huntington's Disease

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 by clicking here and comments for Deb to pinewood4@tds.net.

Created: Oct. 23, 1999
Last updated: Nov. 13, 2010