My husband's mother had HD. He is 40 this year and is exhibiting the beginning signs of HD -- twitching, fidgety, restlessness, clumsiness, etc. He has always been a bit nervous, but it is much more significant in the last few years. It really came to my attention when some of his family, who hadn't seen him in a few years, were asking about his health. He does not want to get tested until he gets more significant symptoms -- doesn't think he can handle the death sentence. I am frightened 100% of the time and trying to hold on to hope that either he doesn't have HD or that there will be a cure soon!!!

getting tested for HD isin't a death sentence. it is a way of making plans a little bit easier for the future. it is like the bluprint to building a house w/o it the house is hard to build. one thing w/ HD that you need to keep in mind is htat it gets very costly. good insurance and making arrangements for long-term care makes it easier on the caregiver. believe me when i say that pHD's are expensive, there are countless things they break and numerous expenses that most people don't take into account. one thing is for sure that if your husband is showing signs and knows that there is a history of HD in the family, chances are it is HD, but a confirmation is always good. another thing is the CAG repeat#. more and more docs want to see if there is a connection w/ the CAG and the onset. if you have children it is most important to get tested, because they do have a right to know of their at-risk status. waiting for a cure isin't the answer.
would love to hear more.

This period of uncertainty is a very frightening time! I hope that your husband does not have HD. Two ways in which my husband and I have coped - before the test and after - are following the progress of the researchers and doing what we can to delay the progression of the disease.

I feel very encouraged by all the advances in research. It helps me to keep up with the research and share good news with my husband who is also encouraged. The studies with the HD mice have been pretty exciting over the last year. The caspace inhibition study shows that intervention is possible and the new study where the gene was switched off in the mice supports the idea that the effects of HD could be reversible. Also, the clinical trial with CoQ10 and remacemide is ending up so we should have some news by the end of the year about whether either or both delay onset and progress of the disease.

You can also talk to your doctor about antioxidants like Vitamin E (natural not synthetic) and supplements like CoQ10. Staying busy and active and learning new things delays onset in mice and it makes sense that it could do so in people as well because of what scientists are discovering about how learning can stimulate the growth of new brain cells and connections in the adult brain. None of these things are a cure of course, but at least we don't have to feel passive in the face of this disease. I really believe that a cure or major treatment is close enough so that if we can just buy a little time, HD does not have to mean a 'death sentence' for my husband or yours if he is positive for the gene.

My husband tested positive in 1998 and was clinically diagnosed two years later. One advantage that this advance notice gave us was to be able to watch his job performance. When his supervisor began to feel that he was forgetful and taking too long to complete projects and his job was in jeopardy, we visited the neurologist, got the diagnosis and a letter, and he was able to retire on disability with benefits intact. Too many people with HD who don't know that they have the disease lose their jobs and their long term disability insurance and then have to contend with being disabled without the benefits that they had counted on and planned for.

Keep us informed! I'll be thinking about you and your husband and hoping he tests negative.