Well I dont know where to start..2 nights ago I received a phone call from my friend(some how that definition doesnt say enough) she was frantic asking if I was still okay about her coming to leave with me..Of course I was..Now she has HD and her family is ..Overwhelmed??.. I think that is putting it mildly or nicely..they are doing NOTHING!!! for her not making sure her meds are filled, her nutrional needs are met, her doctor apointments are made..NOTHING.. We have been friends for 19 years and I was there when her father had this and died.. I have been though everything with her everything..

Where do I start??? How can I help her now?? If she comes here she will be moving a state away from her family..

She has 4 kids..Yep. and Ex that has abused her from the start and now has taken the kids away from her ( her daughter is only 1 year) and REFUSES to let her see them.. Isnt all this stress bad for her in normal circumstaces, let alone with HD..??

Oh God..Am I taking on to much here Am I going to be able to give her what she needs..???What does she need???

I love her and want to give her a chance at the remainder fo her time..Im not a hero and I will need help where can I go for guidience??

So many question maybe Im not even in the right place..??
Shannon

Shannon, bless you for your concern for your friend. As I see it, you need information about your friend, about the disease, and about resources to be able to plan properly on how you can best support her.

Normally you might not want to pry into someone's personal and financial affairs but I think you are going to have to do so here. Have you talked to her family? What are they willing to do to help her? You need to know what is going on here. Are they rejecting her, in denial about her illness and therefore her needs, or is it possible that she has pushed them away?

Has your friend been properly represented in her divorce and the custody proceedings? How will she support herself? Can she still work? Is she eligible for disability?

Have you learned all you can about the disease? We have links to lots of information and you can also send for material from the HDSA. Their URL is www.hdsa.org I recommend Understanding Behavior in Huntington's Disease and the Physician's Guide to the Management of Huntington's Disease.

While you are visiting the HDSA web site, see if you can locate an HDSA chapter near you. Call them and find out what resources are available. Do they have a social worker who can help your friend hook up with local services? Support groups?

What symptoms does she have? Are there any psychological symptoms that may make it difficult for the two of you to share a home? Irritability, inflexibility, compulsiveness? If so, you may need to have an understanding upfront that she will continue to take medication to address these symptoms.

There is a wonderful online community of people dealing with HD. There are mailing lists such as Hunt Dis and HD caregivers, and support clubs such as Yahoo HD Support. We have links to these. I find it very helpful to discuss my concerns and experiences with others.

Hi Shannon.

You sound like a marvelous friend to have. First, you came to the right place. HDAC is a major hub of information regarding HD. It also provides links to HD related chatrooms and instructions for subscribing to HUNT-DIS.

You probably have a lot of questions that need to be asked. If I were you I'd join one (or all) of the several Yahoo chat rooms listed at [www.hdac.org]. Members of these groups get together to chat at the scheduled time. Once you log in you can start peppering the participants with questions - they all LOVE to share their experiences. Many people that won't post to a bulletin board will bare all in a chat room. <g> It was in one of the chatrooms where I learned what to expect with HD and learned how to manage my wife's HD related anger.

To get a major flood of information you might want to consider joining HUNT-DIS. Instructions for joining HUNT-DIS are at [www.hdac.org]. By joining this service you will be sharing e-mails with MANY other individuals who HD experiences you can learn from.

Steve