Debbie's Story
My father died of CJD in January,1994 at the age of 57. The doctors couldn't find anything wrong with him. His symptoms started in November, 1993 and the doctors had no idea what to do for him. Many tests were done and they all came back negative. The doctors were basically grabbing at straws. My father was getting worse and the doctors were telling him he was fine just because they didn't know what was happening to him. They didn't even want to admit him into the hospital at first. My father was getting more and more aggravated and scared. He kept saying that he was going to die. I kept telling him he was fine and it was probably nothing. Little did I know that it was something so fatal like CJD.
The doctors were telling him it was all in his head and gave him many medications that did nothing. It all started with his hand. The doctors then told him it was carpal tunel. His hand began to bother him and he could not function normally. My father could not even hold a fork without dropping it. His hand was also becoming very stiff and he could no longer straighten it. As it progressed, he could no longer write or control his hand at all. Then the other symptoms started. He became very shaky on his feet, his speech slurred, and later complained of having double vision. Our family doctor finally decided that my father should be admitted into a hospital. After a week the doctors were still clueless. Like I stated before, every test came back negative but his symptoms were quickly progressing.
Finally, my father was admitted into a teaching hospital and they diagnosed him so many times with other diseases that I can't even remember any of them. On December, 31st, I talked to my father and he sounded so hopeful. He said that he felt great and that he would always be there for his family. The next day, the doctor called and said that my father had made a turn for the worst and that he had a fatal disease called CJD. The doctors told us there was no hope. We were very confused because we had never heard of this disease. The doctors did a brain biopsy to confirm their diagnosis. They said there was a one percent chance it was something else but either way there was no hope. My Mom said that she had to give him that chance even if it was only one percent. It turned out that it was CJD.
I remember asking the doctors what caused CJD. They were unable to give me a complete answer. The doctors began to ask questions such as: Did he ever eat monkey brains or pigeon? They said that people usually get it if they travel and eat in other countries. My father never did any of those things. I couldn't imagine what could have given him this horrifying disease.
Until this day, we have no idea how he contracted such a horrifying disease. He didn't eat meat, never traveled to a foreign country, and never had growth hormones. The only thing that I can think of is that he use to take bonemeal vitamins in the 80's. The reason I came up with this theory is because I recently saw a show on Dateline about CJD and how people who used bonemeal for planting roses were also getting this disease.
I can't believe that in 1994 CJD was unheard of and we were told that only 200 people in the United States get this disease a year. I hope one day there will be a cure so that others will not have to suffer with the horrifying disease called CJD.