All this time, I am still soaking up info on the Internet. I found the Lighthouse and read people's stories. Andy's story, to me described my life, except that he was a little further advanced. It was another confirmation; I had HD. I talked to others with HD and got on HUNT-DIS. Everything I heard confirmed my fears. I read up on tests being done. I drank 5 cups of green tea a day, had a teaspoon of Creatine a day, took multi-vitamins and built my way up to 600 mg of COQ10. I was trying to buy time. Anything to make me last until they find the CURE. I accomplished all of this before I ever started the testing procedure.
On the first visit to the Genetic Counselor, I had no idea what to expect. Tessa and I drove down to Columbia and I filled out the paperwork as we sat in the lobby. I was scared, and I needed to hear that I DID have HD. We went into a conference room with Ruth and I explained the symptoms and she said, "I don't see any signs of symptoms.
I wanted to scream, "But I'm on the inside, do you think I would make this up?" She asked that if the Neurologist found that I was symptomatic, did I want to know? Without hesitation I said, "Yes." I also had 2 interns observing the whole process. Next, Tessa went in a separate room and was to take the same battery of tests that I would. They comprised of word association, pointing to pages and counting, etc. I thought to myself, "Hell, I know I'm not that advanced." This took about an hour. Next was the Neurologist.
A funny thing happened when I stepped in for the neurological exam; at that very moment I REALLY wanted to pass the exam. I concentrated hard to fool that guy. He had me do some hand tapping skills, follow his finger with my eyes and he watched me walk. He said he was done. I asked, "Am I or am I not symptomatic?" He smiled and said, "I see no symptoms of Huntington's." I thought to myself, "He doesn't know anything!" After all, my sister's weren't diagnosed until I blind man could see something was wrong.
I decided the neurologist didn't want to give the bad news on the first meeting or he truly didn't know what he was doing! After the neurological exam we returned to the conference room. Ruth explained that on the next visit, in one week, I needed to compile my family tree, write down what we would do before and after the test and write a paper on how the results would impact our lives. I would see the psychiatrist on the return visit to see if I could handle the test results. "In the meantime," she advised," Find a psychiatrist to get a grip on your anxiety attacks."
