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First, A brief history:
Huntington's Disease runs very near 100% in my family from the maternal side. I have researched seven generations and have not found one person who does not have HD. I have known what I was up against from early childhood. I have seen HD from JHD in a 15-year-old cousin to late onset in an uncle that was near 80 when symptoms began. My mother died at the age of 42. I have a sister that was diagnosed at 25 and still is in a nursing home, and another sister who was diagnosed at 38 and is also in a nursing home. The younger has been hospitalized for 11 years, and the other, for 3 years. I have one brother, 2 nieces and a nephew at risk. I will spare you the stories of childhood; anyone who grew up in the early 70's with an HD parent knows the tale. Now, on with my story...
One day in 1985, I had my first twitch. Not a little twitch, but a full foot wiggle. I was lying on the couch; about to fall asleep when it happened. "What was that?" I thought. HD? My God, my first HD twitch. I was very scared but managed to reason it away as being tired. From that day on, I have had twitches. Usually eyelid twitches, sometimes a shoulder muscle wiggle, a leg muscle jumps. My big toe would twitch straight down when relaxed. Over the years, I managed to stay calm about it and no one noticed, or at least they said nothing and I wasn't asking. I stayed calm by reasoning that if it was HD, at least I was still functional. I wasn't getting angry at nothing like my mother did. I wasn't walking like I was drunk, and I was still in full control of my faculties. As the years wore on, I began to really worry about those twitches and checked myself constantly. I'd hold my hand out and watch my fingers shake, I'd practice walking a straight line and even close my eyes and touch my nose. Could it be I had HD? I asked no one. I was not going to mention these symptoms to anybody. Seven years ago when I met Tessa, I was a heavy drinker by anyone's standards. I would toss back 4 or 5 beers nightly, without fail. I easily did this for at least seven years. I was trying to self medicate and I knew it. Tessa realized I was a drinker and in my family, on my father's side, drinking is a family tradition. All this time Tessa suspected nothing.
The copyright of the article Ray's Story - A Story from One At - Risk in Huntington's/Brain Disease is owned by . Permission to republish Ray's Story - A Story from One At - Risk in print or online must be granted by the author in writing.
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