We had married right out of high school, it was shortly after that, that things started to change. I didn't realize then that my father-in-law was sick, to me he seemed like a nice quiet man who never bothered anyone. To me it seemed like my mother-in-law was the one who was making things up, she just said he was crazy. It is a very long story, so to cut it short, we had 3 boys over a ten year period, we were a family no matter what. In 1985 Les my ex started to display unusual behavoir, not only to myself but the rest of the world. He was admitted numerous times to hospital, most times taken there by the police. Something was wrong, both his parents had passed away by this time and his sisters, and brothers whom were older then him, wanted nothing to do with our problem.
It took the doctors around here about 5 years to see the seriousness of the situation. His diagnosis went from "anxiety disorder" to "paranoid schizophrenia".
It was to dangerous for the boys and I to stay in this situation any longer. Mind you, Les's paranoia was directed at me, not the boys at this time. If you know anything about schizophrenia you know what the outcome of that disorder can be. In Les's world he was God and I the devil.
Les was admitted back into the hospital in 1990, and seemed to be getting
progressible worse. If it wasn't for his social worker Joyce McIntyre, I don't think HD would
have been found at this time. Joyce and I stayed in contact often. She would phone and ask about
his movements, what they were like at home. I was told by doctors, that the movements
were side effects from the medication for schizophrenia. I didn't feel that they were,
and neither did Joyce. It was Joyce that was able to keep after the doctors for more testing.
I feel that if it wasn't for Joyce, Huntingtons would not have been diagnoised.
The family secret was now out.
We had already been separated, and Les was put into a group home, where he remained until November of 1999. He was then place into a nursing home where all his needs would be met. On January 02, 2000, Les passed away from a massive heart attack at the age of 52.
With the passing of Les, you might think that the disease would end, but it didn't. My oldest son Ken was diagnosed in December of 1999. Another generation of HD was in the works for us.
When I think back I didn't realize then, that the problems my oldest son was having in school and socially could be related to HD. HD at that time wasn't heard of in my family. Ken quit school in grade 9, went right to work on a farm, and then to driving truck, something he had always wanted to do, since his dad was a truck driver himself. Ken was a hard worker, and still is even though his truck driving days are done. He now works in a factory with my husband Vaughn and other son Mike.
Ken started having problems with the law, getting into trouble, but always managing to have an alibi, and slip through the cracks. He always tried to say he was set up, but I really knew, something was going on, but just didn't know what. Finally after one failed marriage, and another on the rocks, his life started to fall apart. Ken is a very loving and trusting person, and his family means the world to him. He lost his truck driving job, his marriage was falling apart, and his dad was dying, all this put on his shoulders was to much. In 1998 the stress was too much, he didn't know why he was doing the things that the police were saying, but the police were right, and something had to be done.
Ken and Mike were tested in 1993, when we first found out about Huntingtons, but they didn't want their results. They said they weren't going to let HD rule their lives, but with the testing already done, if something should arise to cause them to think that they may carry the gene, they would get the results then. Well the time had come for Ken, to find out why he was having these behavioural problems, he knew that what he was doing was wrong, but was at a lost as to why and what should be done about it.
Ken had already had an appointment booked with Dr. Jog from the Movement Disorder Clinic in London, because of problems he was having with tremors, mostly of the hands, but when under stress, his whole body. He met with Dr. Jog, and then an appointment was set up with the geneticist, to get the results of the blood work that was done in 93. The results were not what we were hoping for, but at least now we knew why these things where happen to him. Ken tested positive for the HD gene in December of 1999.
This is the reason for my fight with HD. I pray for a cure to be found for this deadly disease, to help my son, and all the other people that are affected with this dragon, and to make this the last generation to suffer.
Now with Huntington's back in our lives again, we live the only way that we know how, ONE DAY AT A TIME.
We will fight to the end!!
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