I am new to JoeUser and I like the fact that you can write a blog either for yourself or for a general audience to give feedback on if they want. I don't really care if I get feedback from this post, it is just theraputic for me to get it out of my head and into a format.
My Father died a few months ago from cancer. He was diagnosed and died in an 8 week period of Esophogeal Cancer. When he was put in the hospital, the Dr. noticed a lot of symptoms that seemed neurological in nature that had nothing to do with the cancer he was dying from. My family, as well as my Dad's immediate family had noticed the strange ticks, facial movements, erractic temper and difficulty in speaking and making simple decisions over the last 8 years, but attributed some of it to a stroke he had had. He was a typical stubborn male, and even though he had to go to the Dr. every six months for a checkup due to his stroke 8 years ago, he wouldn't share any of the symptoms he was experiencing that were neurological. He was great at self diagnosis - even diagnosed for himself that the fact he couldn't keep any solid food down for eight months before he was diagnosed with cancer, was probably an ulcer, and he had outgrown one before, but this is a whole other story on male stubborness. There was even a neighor, who my parents didn't know, who saw my Dad taking a walk one day and made a point to stop and talk to my Mom about whether he might have neurological problems and might need a dr. referral, as he was a neurologist. I was living out of state at the time most of this was going on so only saw glimpses of it but was worried. My Mom finally was so worried, she went to my Dad's doctor to talk about his condition, and the Dr. had already told my Dad he thought he should see a neurologist and had given him a reccomendation. My Dad never followed through.
To make a long story a little shorter, we had found out just a month before my Dad died that his aunt had died the previous year from Huntington's disease (also known as Huntington's Chorea). My Dad only relented a week before he died to have his DNA tested for the disease and we found out a month after his death that he did indeed have the disease. I am acutally thankful that he died quickly of cancer instead of suffering with this disease for possibly up to twenty years. My great aunt had displayed many of the same symptoms that my aunts and uncles had described about their Dad (my paternal grandfather) and their grandfather (my paternal great-grandfather).
As more family members became aware of the disease, I started doing research. Huntington's disease is an inherited, degenerative disorder of the central nervous system, caused by a dominant gene. This means that everyone who inherits the gene from his/her parents, WILL develop the disease, and the likelihood of inheriting the gene is 50%. For those of you old enough to remember Arlo Guthrie, he died of it and his family continues to suffer as more of Arlo's relatives are diagnosed with it. The gene was only isolated 15 years ago, so many families that have this in their past, and always thought of it as the "family curse". Their families will continue to have it in their future as they have offspring. The disease starts as a movement disorder, evolves into dementia and all who have it, will die from it. It mimics many of the symptoms of Parkinson's disease. I won't go into any further medical info about it, as it is lengthy, other than to say there is no cure for it and there are only drugs on the market that help to ease the symptoms, such as Dopamine.
So far, my Dad, his Father and his Grandfather had the disease and two of my Dad's aunts have died from it. One of the daughters of the aunt who died has now been diagonosed with it. It is a horrible disease to watch people go through, from what I have read. The symptons usually start in the 40's to 50's.
My dilema is this......
Knowing what I know, do I get tested for it so that I will know what my future holds from a medical standpoint or not get tested and live life to it's fullest over the next 20 years (I am 38). I am currently single and don't have any children, but had hoped that maybe in the near future that might change. Is it fair to go into a marriage knowing that your children, should you choose to have any, might also develop this disease?
Two out of six of my Dad's siblings are making decisions about whether they should be tested before telling their children. All the aunts and uncles on my Dad's side are at least 50 years old. One uncle seems to be having the same symptoms that my Dad started to have early on, but it could also be that he abused drugs for a long, long time after the Vietnam War and the body is just wearing out and rebelling.
If I choose to get tested, which involves genetic testing, I have been counseled not to do it through my health insurance, as they can use this information to terminate coverage since it is a deadly disease or prevent you from getting new insurance. Even with HIPPA laws in effect, the chances of the medical history on this getting out could affect someone's life for ever.
So I am trying to weigh the pro's and con's of whether it is better to know or not know. Do I live my life as if I didn't know anything about this or find out and do what I can now to prevent symptoms, if I get any, from getting too bad?
I never had a strong opinion on fetal tissue testing until now. My maternal grandmother died of Parkinson's disease 18 years ago and as in Parkinson's disease, the neural grafting of healthy fetal brain cells into the damaged areas could offer help for sufferers in the future.
My question to those of you that choose to read this is this: Would you choose to be tested and know what your outcome will be and how you will die or live life day by day, enjoy it to it's fullest and deal with the issues when they come up?
Thanks for reading.....
Varoom (Melissa)