My husband was diagnosed with HD nearly a year ago. It was purely by accident that we even discovered that it was in the family, we found it when looking for his father and half sister. In any case that is really not my issue. Since his diagnosis Bill has "seemed" to have taken the news very well. In fact much better than I or our two young children. however lately I have noticed that he really is not dealing with his diagnosis at all. He has wonderful doctors out of columbia Pres. in new york city who have stressed two very important things that he needs to do. One is to gain weight and the other is to exercise. Bill was very much the exerciser before he was told he would do better if he exercised now he does't exercise at all. The same is true regarding weight gain, he has been told to eat every two hours in order to gain since he has been told that he has begun to eat less. I can't help but wonder if he is not doing this on purpose. It almost feels like he is just sitting here and waiting for the disease to take over, he is not fighting at all. I know he probably needs some counciling but he has not yet begun to receive medicare and my employer does not offer insurance, and the pay is too good to give it up. I don't know how to get through to him and I am concerned about what this is doing to my children. I feel like I mothering three children instead of two and I am so bogged down that I sometimes forget to take care of myself.

thanks for letting me vent, this is a wonderful forum and I'm gratefull to have found it. It is hard to get others to understand my feelings and I feel like this is a great place to share, a place where people will understand and not judge. anyway thanks

One thing you might want to do is sit down with him, pencil and notebook in hand (his preferrably) and discuss what he needs from you and what you need from him to cope with this disease. Then have him write it down. My husband and I did this and it worked very well.

When things are relatively stable in the beginning, after the diagnosis has been made and life has adjusted accordingly, it is very easy to slip into a tacit understanding that you are not going to talk about the disease. I think that's a mistake because it makes it harder to deal with issues and problems as they come up.

Of course HD is only a part of our lives, not all of it and no one wants to be 'defined' as a person with HD when they are also parents, spouses, voters, members of their church, volunteers, etc. But it's important to strike a healthy balance between ignoring it and making it the focus of one's life.

One of the impairments that come with Huntington's Disease is a difficulty in initiating activities. I can readily understand this because although I do not have the disease, I really hate tasks that have a lot of 'but firsts.' (I need to vaccuum my office but first I have to get these boxes off the floor, but first I need to go through them and get rid of things I've been storing and don't really need.... etc.) As the disease progresses, every chore begins to feel like one with too many 'but firsts.'

You can help your husband in two ways. First by incorporating activities into the daily routine. For example, after dinner, you both take a walk around the neighborhood. The goal is to exercise to fitness, not to excess. The second way is to assemble whatever he needs. My husband likes to pay the bills. So I bring him the bills, a box of envelopes, the checkbook, and the stamps. Then when he's done, he leaves the envelopes open for me to double check. With the exercise issue, you can get his walking shoes or lay out his exercise clothes or whatever he needs to help him get started.

You might want to visit the HD Lighthouse, our other site at www.hdlighthouse.org . It's designed to help people be proactive in coping with the disease.

I'm glad you have found us and hope you'll keep us posted.

Marsha,
Thank you so much for your advice, I'll surely give it a try. I actually found the Lighthouse site last nite and copied the caregives handbook to read. I'll let you know how things go.

The most mystifying part of my life is what I call "Pig Won't" from the richard scarry story about Pig Will and Pig Won't, that I used to read to my stubborn daughter.

I have a lot of Pig wont right now, and I also got worse with the diagnosis one year ago. The ritalin I took for 6 years after a diagnosis of adult ADD helped immensely with the pig won't feeling, but the long term effects of what is essentially amphetamines worries me now, so the psychiatrist said I could still use it if I needed to do taxes or concentrate, but switched to wellbutrin in addition to the prozac, and it is taking about two months to make the thinking better, but it is subtle improvements.

I'm going to try Marsha's suggestions, because that is exactly my big wipeout: "but firsts"

swimming in the warm water pool removes oscar the grouch from my life for a day or two per one hour swim.

Apple



Edited 1 time(s). Last edit at 12/29/2006 11:06AM by appleseed.

Marsha,

I wanted to reach out and help Fran. However, your post covered it all. You are incredible.

Thank you so much sometimes I feel so alone but it easy to see that this is a place to come when those feelings get to bad. thanks so much I hope I can return the favor someday!

well, your posting helped me immensely by showing me someone else in the same problem.

It is interesting to me that if I get in the car and go somewhere, I feel energetic and can think. Also walking I can think better.

I still have some desire for things in stores, but now have learned I don't always use them once I get them home.

Now I am taking 200mg wellbutrin morning and night, and 40 mg prozac at night. The only bad side effects are sinus pressure and constipation. I use saline nasal spray and mucinex and push fluids to drink for sinus, and increased my fiber and magnesium citrate tablets for the second problem.

apparently the muscle problems were creatine plus dehydration.

I can stand sad parts of movies now, and can read tense parts of books. I seem to be able to go through the grim process of Ovarian ca with my best friend ok...Since I can't work, I found my needs to give care meshed with her problem. I have the time to sit though chemo with her.

I am doing exercises with facial muscles as suggested somewhere here before the holiday. anyone know how that works?

Apple