Saturday, August 9, 2008

Huntington's Disease (Chorea)

Ya know we're all born with a terminal illness called death.
It's not a communicable disease, we all have it.
So why are some journeys to that end so very different than other people's?
For me, this genetic disease called Huntington's Disease (used to be Chorea) has been a MAJOR
consideration to my whole adult/growing up.
It wasn't always in my awareness. Really, age 17, senior in high school was when I was told about it. Happy graduation!!
I have to admit that at first, it really didn't mean a whole lot to me and my life.
It wasn't until the summer after graduation, when i volunteered for an organization called SwitchBoard--a crisis intervention/suicide prevention telephone organization.
During the training, the HD issue surfaced. Surprising me with the force and feelings I had
about it. Not devasting or even depressing, but certainly an awareness I did not have before.
So, I started doing a little more research and asking my mother questions about the disease and my father who was the 'carrier' of the gene that would determine something in my future.
My mother divorced my father when I was 7 or 8 years old. He was a drunk.
Somehow, I found out the Neurologist that my father was seeing and one night called.
It was evening and I'm not sure why he called me back, but he did.
He told me that Yes, my father did have Huntington's and that I should call his office and set up an appointment for a basic neurological work-up.
I did.
For some reason, I thought that he would be able to tell me if I was going to get this diease or not to worry about it. This was 1970.
My mother accompanied me to the appointment and after a lengthy medical history process, I was taken to the office of the doctor.
He was an older man, which I felt comfortable with figuring he had lots of experience.
After multiple tests, mostly coordination testing (I was never very coordinated) and some thought/mental tests, the doctor gave me his assessment.
"Well Keith, as far as I can tell, at this point you have no symptoms of the Huntington's."
Sometimes, I'm a little slow assessing a situation and my mother quickly thanked the doctor for his time and guided me out of the office.
It wasn't until I got home and sat in my room, that I realized the doctor didn't tell me anything I didn't already know. At the time I was angry, I had expected a 'yes' or 'no' which now, I realize he could't do. Later, I would realize/understand that that assessment was a really good thing for future assessments concerning this disease.

That's as far as I can go for now. Don't worry, more to come.
smitty

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