My mother was diagnosed with HD in 1979 and died in 1990. Even though we all knew that we were at risk, we have not dealt with the fact since our mother's death. My sister was diagnosed with it last week. I am trying to find info that might help her deal with the emotional part of learning that she has the gene.

Hi, Kathy! Welcome to HDAC. I'm sorry to hear of your mother's loss and your sister's diagnosis. I think everyone is different in how they deal with the disease. My husband tested positive for the gene in 1998 and is now retired on disability. One way that he deals with having HD is to focus on the progress that the researchers are making. I read everything I can find and keep him updated and we both attend the annual HDSA conventions and go to the research panels and talk to the researchers.

Medication helps, too. As I am sure you know, depression is a symptom of HD.

Many people look for and find support within the HD community, both local support groups as well as online support. Giving support to others - listening, talking things out, offering suggestions when invited, as well as sharing humor - can be as helpful as getting it.

Thanks for the concern Marsha.

Also, thanks for the advice. Your husband is very lucky to have you. I am trying to ease my sister into getting involved in HD things. How does your husband react to being around people who are more advanced in the disease?

Kathy

Surprisingly, it doesn't bother either of us to see people who are more advanced, although of course we wish they could be well. When you go to the conventions, support groups, and chapter events, you see people participating in activities and enjoying life despite the disease and that is very encouraging.

I never thought of it that way. Thank you for the insight.