Hi all...I have a problem...Have any of you worked with a resident with Huntington's Disease/Chorea????
I posted this on the general discussion forum and if any of you saw it and replied, thank you very much. I had hoped to get more of a reply but that forum moves SO FAST!!!!
Long story short, my dad who has been out of my life for about 25 years, I found out last year passed away after trying to find him. After talking to his "conservator" she told me that he had a dx of Huntington's Chorea. Need I say that if any of you know about this I FREAKED!!!! After doing research with some of his family whom I don't really know, it was confirmed that it is in the family.
Now my problem. I am 40 something, have 3 children and feel I need to decide if I should get tested or not. I have weighed both sides of getting tested and not, but the short of it is, that if I decide not to get tested, which I feel is OK, I must pass this information on to my children so that they can decide to get tested or not. If they do decide to get tested, and they or I find out that they are positive, that will automatically mean that I am positive. I don't know if I want to know this. Would you want to know that this is probably how you are going to die???
Please don't tell me to go to counseling. Been there done that. They basically told me that it is up to me and before I get tested I should consider "getting everything in order". (i.e. Health insurance, long term care insurance, funeral plans, etc.) Alot of people have told me that once I find out that I have this I need to pass this information onto my insurance and possibly could be declined from having insurance and maybe eventually be fired from my job is this disease should interfere with my work. I pray that if I get to that point I will be quitting on my own and traveling around the world to enjoy my life.
Just to know, what would any of you do, if you know how this disease progresses. I have worked with 1 Huntington's patient and it was the worst experience of my nursing career. I remember saying, that I thought that was the worst disease that I had ever seen. I can't even believe that this is true in my instance, but I feel that I have to deal with the reality that it is. Feeling was on the other forum, that I should get tested. Most people felt that they could not live with the unknown and feel that they should live their live the best that they could now. How do you feel????
Please be honest, and try to put yourself in my shoes.........
Thanks so very much.....