| Living With Huntington Disease |
| In 1987, I was working at ECL and our family doctor came in and called me aside. He told me that Norman probably had Huntington's. He had just seen him walking downtown and could see it in him. "It's about time someone else saw it", I said. He wanted to see my husband in the near future. My next day off I told Norman what my Doctor had said and that he wanted to see him. Norman said " Oh Good!! I thought I was going crazy." Norman was determined not to be like his father and he was going to fight it all the way. His big saying was " I have Huntington's, it doesn't have me. " |
| The doctor didn't prescribe any medication at that time. Later I asked for medicine to calm him down. Zanax was prescribed. Norman worked two or three more years after that. He was a bricklayer's helper originally but became a set-up man so that he wouldn't have to climb. I think not working any longer was the hardest thing for him so he did the housework and took pride in it. I was thankful to be working as it was my " escape ". He didn't have his lisence so he would walk five to ten miles a day. He noticed that walking helped him in many ways. Norman was very jealous. Maybe it was because I was working and he couldn't; at least that's what I told myself. he would have outbursts and say it was like the devil taking over. He couldn't stop once he got started. He would get the feeling it was going to be a bad day, so he would walk up the road rather than into town where there were people. He would explain to people about HD and how it effects him. Norman was one to go all the time. We liked to dance so we went every Saturday night. At the last he didn't dance well but we went anyway. I started making jokes about some of the things he did. It often calmed a situation. Then we met Verna Dowe who told us about a family day in Hamilton, Ont. I was off work by then with my back so we decided to go. That was a boost for both of us. To know that there was so much going on in research and people working with HD. We came home ready to get involved and start our own chapter. I read every book from cover to cover. Some I read aloud to Norman so he would know I wasn't making things up. It was in Hamilton that I learned about Tetrabenzine. I arranged an appointment through our doctor with Dr King and Norman was started on the test drug. What a change this made in his life. He even mellowed out. As time went on he had other HD related health problems and we dealt with each one as it came, the best we could. In 1995, Norman died of a sudden heart attack but the fight for a cure goes on as I still have five children and nine grandchildren all at risk. I WILL NEVER GIVE UP !!! |
 |