a person in my family did not want a feeding tube either and his wish was granted. in his siuation it was a process on which i will never forget. without nutrition your body starts to shut down, also the pain level increases, with this you need to talk to hospice or a private RN because they can give med's for the pain. it is in liquid form and is just put in their mouth in between the cheek aby kristine2008 - Huntington's Disease Support Center
thank you for your input. Rowan, i agree with you on being lost in the beginning. a lot of book stores around our area do not even have books on HD, so our family was lost. now we have done tons of research on HD and have documented the processes that people in our family have gone through with the disease, each being different. people in our area, are not aware of HD even though i know of aby kristine2008 - Huntington's Disease Support Center
i agree with yzrabbit1, I have been tested but others in my family have not. It has changed my perspective on life. Don't waste time i guess is the best way to put it. Even if you never develop symptoms at least you lived your life to the fullest, you have no regrets. A lot of people waste time away working too much and never doing the things they have always dreamed of. thank you for all oby kristine2008 - Huntington's Disease Support Center
I do not understand why some people do not get tested if they are at risk for HD.by kristine2008 - Huntington's Disease Support Center
I am 27 and negative for HD but my mother is a carrier, showing no symptoms. I have one sister who has not been tested yet. Our HD came from my grandmother we believe who commited suicide which we all think was because she did not know what was going on. My mother has two sisters, and three brothers, one which passed away last year with HD. My cousin passed when he was 18 from it also. Everyby kristine2008 - Huntington's Disease Support Center
I understand that there is a lot of information here, I just thought that a book would help, since the progression of the disease varies person to person and so many people do not know where to even begin. thank you for your input.by kristine2008 - Huntington's Disease Support Center
I was wondering where would someone begin if they wanted to publish a book about the steps to take in the process of HD? Steps like legal, insurance, care, nutrition, progression of symptoms, when and if to move patient into other care, etc. I think this would help so many people since a lot of them have no idea where to begin.by kristine2008 - Huntington's Disease Support Center
hello trey! I am sorry to hear about you having HD. So many people do not even know what it is, so its hard to talk to people about it. On this website you can get a lot of information and have a great support group from others who have hd themselves or in their families it is a great place to chat to others like yourself. Thank you for spreading the word about HD.by kristine2008 - Huntington's Disease Support Center