My father was the first one to be tested in our family, literally over his dead body!
When Dad was in his late fifties, he got in trouble by hitting his second wife, who was weakened by breast cancer at the time. She called the police, and he was taken to a downstate jail, near where they lived.
At the time, our little family was getting ready to take a summer camping trip. When my father called us from jail, we ended up taking a week-long vacation downstate, where we camped in my mother's driveway in our home town. The whole family gathered during this time, and all of us adults were trying very hard to protect our children from too much knowledge of Grandpa's delicate condition (Huntington's Disease), which really had not been named in respect to our father. The family of our stepmother also rallied to defend their mom, who was afraid that he might do it again!
In preparation for meeting with the judge, we decided to tell him that our father did, indeed, have Huntington's Disease, and that we would see a medical specialist as soon as possible. As we spoke to the judge, Dad said,"I do not have Huntington's Disease!" and he gave me a "sidewinder glance," as we called it. Every time think of that conversation, I always remember his "sidewinder glance!" and how guilty I felt to be the one betraying him. The judge released him, as long as he agreed to seek a medical expert.
Dad and his wife moved to Wisconsin so they could be near his mother, who was still living at this time. He promised that he would try not to hit his wife anymore, and that he would go to a Wisconsin doctor that I selected. In retrospect, I now realize that I should have contacted a Chicago Huntington's disease specialist, but I ended up setting up an appointment with the neurologist that had seen a cousin of ours in a nearby town. This is the first time that I got to witness a neurological exam, and Dad's symptoms were quite obvious to me. At the end of the exam, the doctor said that it was probably Huntington's Disease, since his father and cousin had it, but recommended that he get the genetic test, which had just been developed. Of course, my Dad never returned to that doctor; he was there under judge's orders! He also never had the genetic test, while he was still living. He also never admitted that he had Huntington's Disease.
My stepmother eventually died from the breast cancer, and my father lived alone, near his mother in Wisconsin for the next year. We went to see them almost every weekend, and took both of them shopping for his staples - pinwheel coffee rolls, Big Macs, and bananas! Every time we saw him, he asked that we take him fishing in Hayward, which was one of his favorite vacation spots when he was younger. We always had to refuse, which made us very sad! But we were pretty busy with our family at that time, and his mom was still alive, too. So we never got to take him on his dream fishing trip.
Dad also rarely answered his phone, so when Grandma couldn't reach him one hot summer day, we thought he was just ignoring the ringing of the phone. Finally, after a few days of not reaching him, my younger brother, who was there helping Grandma, used his key to let himself into our father's house. He found Dad's body where he had fallen in the hallway, apparently a few days earlier. My brother was very young (in his twenties) at this time, and many years later said that this was the most terrible thing that he had ever experienced.
During the following days, we spent lots of time with our Grandma, trying to plan a memorial service that would ease some of her pain. Since the body was somewhat decayed by the time we found it, we decided to have him cremated. We didn't let Grandma see his body, and I didn't see it either. My husband did the official identification, and it was something that haunted him, too.
Then, I had the brilliant idea of having his DNA tested, so that at last we would know the answer. My brothers both agreed that we could do it, but it also delayed the cremation process. The genetic test for HD at that time required two test tubes of blood, and it was the coroner who had to take the sample. It wasn't easy, but he got enough for the test and sent the sample to the lab that I instructed him, and the answer was sent to our pediatrician, who was our family doctor at the time. So, we finally had an answer, even over his dead body! He was positive, with a CAG count of 42.
