Huntington's Disease

Definitely at times I've felt alone with the disease. Its one of those things it seems that no one has heard of yet its not as rare as people think it is. I'm lucky enough to have a Huntington's Disease family service center near my house. I go there for appointments and my dad and uncle go there also. For me my testing took I think around 7 months, but that was because I was so young and depending on who runs the clinic guess they handle things differently. I did a lot of research though before I got the test done. I'm pretty much the only one in the house that knows really anything in depth about the disease. My mom though is my dad's primary caregiver. We have a health aide that comes for my dad twice a week. Getting tested is definitely a really hard decision. For me I just had this feeling in my head that I had to have it done. It was something I wanted to find out. Feel free to e-mail me or send me a message :) -Stephanie

My father and uncle have Huntington's Disease. They both inherited it from their mother. We've traced it back several generations. I myself am gene positive which means I dont have symptoms now but I will definitely going to get it when I am older. Its hard to say what to do in these kinds of situations. I had sort of a similar situation. My grandma was in the nursing home for the last few years of her life because of her Parkinson's Disease. I had never gone to see her and I was terrified to go, but my grandpa ended up getting sick and they were put in the same room and I finally got the courage to go. I'm thankful I went to see them. My grandma wasnt aware of anything going on but I knew who she was and to me as long as I could just hold her hand or something it was all worth the fear. My dad now is going to be in a nursing home soon and its definitely going to be difficult to adjust. But I'll deifnitely make sure I see him. No one should be forced to though, or at least thats how I feel. My brother never went to see my grandparents in the nursing home because he was scared. I've never heard him say he regretted it even though I know I would have. Sorry for the babble, its hard to get everything out in a little blurb. If you ever want to talk about the huntington's disease please feel free to send me a message. I'd love to chat:) -Stephanie