My wife was diagnosed with Huntington last month after years of denile that anything was wrong. She has Choria and is still fine except for the movements and ticks. She still does not think there is anything wrong. She still drive the kids and does normal things but whenever I bring it up she get mad. I plan on telling my kids, age 15, 13 and 7. I know they know something is wrong as I heard through someone that the oldest had a friend ask what was wrong with their mother and she responded "we don't talk about that." I know she doesn't want me to tell them, she told her sister when it was brought up that she didn't want the kids to know, but I will be telling her over the weekend that it is what I have to do.

Like to get some advise on how you all may have talked to your kids.

For the longest time she had movements and only I talked to her about it, but after my family confronted her about the movements (Lots of nurses in the family) and then her family backed it up did she finally get the tests done. Took a long time. Looking back, the movements and discussions started aout 5 years ago. The disease has skipped a generation we think as her dad died from cancer at the age of 46 with no signs and so this came from left field. We did not know it was with her great uncles who had passed from it. She has 8 other uncles and aunts in their 70s and 80s and 60 cousins with no signs of the disease in anyone else. I need a big cry as I have been sucking it up for this past month.

Sorry to drone on, but I could use some help with my kids. Thanks

I come from that kind of family. I have it, my mother has it. Same scenario, she's in denail, everyone knew something was wrong, she won't discuss it with everyone. I make it a point to discuss it! I'll discuss the HD symptoms or things that can help her with her daily living, it doesn't matter just as long as she knows the topic isn't going to go away just becuase she doesn't want to hear about it. I don't care if wants to discuss it or not, because I do and I don't care if she gets upset. It's a fact of life, you have it and sticking your head up your butt isn't going to make it go away or better.

Thanks, Huntington has been gone from our family for a generation that we can determine, we thought it died out. So now I have to share with my girls what is wrong with their mom. Any feedback?

It's probable that her father had the genetic defect, but died before symptoms were apparent to others. Some don't develop the disease until their 50's or 60's. My husband did not know it was in the family because he moved to the U.S as a child and had no contact with his father, or father's family.
I feel strongly that the children should be told about the disease. It will be difficult for them to deal with regardless at to when they find out, but the earlier they know, the less they will feel betrayed by any secrecy. I know in our case my husband had symptoms for years before he was diagnosed. His behaviors were upsetting to the kids, and our home environment was very stressful. Once he was diagnosed, I did a lot of research on the internet to see what I was up against. My husband was against telling anyone he had the disease and for a long time he told his employer that he just had a mild movement disease and he was perfectly fine. It wasn't until he had an accident at work that he finally had to come to terms that his brain and body did not work as well as it used to.
I told our kids shortly after he was diagnosed so that they would understand that his odd behaviors and agressiveness were things he had no control over and that they were in no way to blame when he became angry with them for no reason. I can't remember where we were, but I know I told them together, and any questions I couldn't answer, I looked up on the computer. We were also very lucky to be awarded a scholarship to the annual HDSA Convention. My husband would not go, but the kids and I did, and it was wonderful to meet people that were going through the same things we were. The more we learned about HD and talked about it, the less we were afraid. We were eventually able to find some bits of humor in our crazy new family dynamic.
Can't say it's always a picnic, but lately we have been able to keep him on a good schedule, and he seems much happier.

I will have to deal with this some day (not now because we have other behavioral problems that we are trying to work on).
Here on some things that look good to me:
[www.hdac.org]
[www.stanford.edu]
[en.hdyo.org]
Or maybe try searching this site for how some others have approached this. Have you tried the search forum option? That might give you more good ideas.
Sorry to hear of what you're going through.

My mother has HD. She was 72 when diagnosed. I had a very hard time dealing with it. We told our children, then 17 and 15 after a few months. I told them about the genetic thing and that there are lots of scientists working towards a solution. I am untested but I had a talk with a genetic scientist. she told me that it is probable that there will be a cure when they should develoip it. So we told them that. They told me that it was not nice but they think both that there are other, maybe worse things to deal with. We encourage them to talk about it but they do so rarely. But 6 weeks ago I went to an art project exhibition of my eldest son and he had made a drawing of a person with a brain disease that was robbed of his possibilities. He had drawn soldiers that fought the disease. It was very moving. For me it was very good to talk about it with them because keeping secrets from them was very hard. I wish you all the best!

Thanks, this has been good. I have beenn sweating ruining the family dynamics yet I know it is the right thing to do. You all are helping me steel up my resolve to have a talk. And Eve I will use your links. Thanks to you all and would welcome any more comments