Tessa was out of town on business and I had no one to turn to. I came home and cried. "It's happening," I thought. "I'm at onset!" I had no idea of what to do next. I called a local Health Clinic. It was the first time I uttered the words out loud, "I think I have Huntington's Disease." The woman on the other end of the line told me, to see a General Practitioner first. By this time I was very scared. I went to the GP and told him that HD ran in the family and I thought I had it. He made me do the drunk test and recommended me to a Neurologist and gave me 20 5mg. Valiums. "WHAT HAD HE SEEN?"
When I got home, I lay on the bed and cried. "Poor Tessa, my dad, my brother; how would they deal with this?" I felt guilty for not letting Tessa out of the relationship before when I knew I had symptoms. She never wanted out, but I was miserable for her. My neurologist appointment was set for October 27. I was depressed and very scared. When Tessa returned that evening I had to tell her. She cried right along with me and said she was in for the long haul. My incredible fortune; I probably couldn't have continued on without her.
The next day I got on the Internet and started searching. Someone had to be able to help me. One of the first places I found was the MGH Chat room for Huntington's Disease. Pat, Lynn and Carmen were in the room. I was a wreck at this point. They calmed me down and made me realize that they would always be there for me. I cannot express what that initial chat did for me. Pat kept saying it wasn't HD (I didn't believe her, but it sounded good), Carmen was just as soothing and calming as a person could be, and Lynn's enthusiasm was contagious and refreshing. What great people I had found! Man, maybe I wasn't going to be alone in this. I had to calm down. I decided that knowledge was power.
Over the next few weeks, I absorbed as much info as a mind can take. I have tons of info stored in my head about HD. I also stumbled on to a girl in SC that was the financial secretary for the South Carolina Huntington's Disease Association. I e-mailed her and we met for lunch along with the president of the association. They both said that I wasn't displaying symptoms. But I was on the inside, I KNEW. Jill, the president graciously offered to pay for the testing and recommended I go to a different Neurologist in Columbia, SC for the testing through a genetic counselor named Ruth Abramson. Well, now we are getting somewhere...It was scheduled for November 12. A longer wait!
