I found this website only a few days ago and know it is one I have needed for a long time and hopefully one I can help others too.
My husband has had HD for 12 years. His father died of HD, he has a younger sister and brother in a NH. Three of his first cousins died of HD and two more cousins are in NH. I have so many questions or feelings that I am not sure how to deal with. I plan on staying with my husband but it is getting ever so hard. He does much on his own but the main problem is myself getting put down daily numerous times. I still have to work and don't mind. I was told his problems are behavorial and would be an "easy fix" for a psychiatrist. It took an arm and a leg for me to get him to one. We found one, who I feel, was excellent and one who prescribed risperdal on a trial basis. My husband agreed to try but after two weeks quit and said all problems are due to me and he will not take it. I still have not given up on him trying the medication but don't know of any easy way and I do not want to hide it in his food, etc. as should he find out that would totally take his trust away even though with his personality and HD there is not much trust at all.
I know HD is 50-50, however, in his family it seems to be 90-10. It seem in each family of 5 siblings 4 get HD and one does not. Is this common or is it just the genetics of his particular family?
We have two beautiful children who are grown and are making wonderful contributions to society - they care about people, they are concerned about their dad, they are concerned about my health in this situation and they, of course, are concerned about their future.
I guess mainly I do not feel a zest for anything in life anymore. I constantly work and being belittled daily by my husband takes all the energy I have. Even I know he does not probably mean it , it is still hard.
I worry so much about our children and feel so guilty that they have to worry about HD. It is as if I had them and I get the joys they bring but they have HD to worry about which I didn't growing up. I didn't even know what it was. I have tried to stay positive and my husband and children do not see how I am struggling with this - they have enough to struggle with.
We also have two beautiful granddaughters (4 & 2) and I worry so much about their futures.
Many people have come to me for advice on various issues in their lives and I feel I have given good advice and upbeat advice, but in my own situation, I do not seem to know how to get through this.
I will try to schedule a counselor as I know I probably need to talk with someone but wonder how all of you beautiful people in this same boat cope and keep going on.
I have read postings the last week and one from "Eric" was so beautifully written and took such a wonderful, positive spin on things
and I thought I need to think like that so I thank all of you for your postings on this site.
I apologize for this being so long but I have needed to talk to some who understood for so long and I thank you all for being there for each other.
God Bless You All

I should probably add to my "novel". My husband and I are both 57 and have been married 37 years. That seems so old but inside the body it seems like time has flown.

Shar, we had a discussion here a little while ago about answering posts. It seemed (myself included) that if you don't know wat to say or if it goes to deep or is to hurtfull, you somehow can't get yourself to answer a post.

This is one of them. I don't have any experience with what you are saying but it breaks my heart to know what you are going through. You are the kind of person who is always there for everyone but now that you are in need of help, you don't know where to turn. I think counselling is a good idea. Remember, that if you are not good to yourself, you cannot be really good to anyone else.

I hope there are others that can give you more adequate help but I just wanted to let you know I'll be thinking of you. And please feel free to vent your feelings. It can help sometime to let off a little steam.

Take care

Elizabeth

Welcome, Shar. I am in your age range, 62. I have 37 repeats and no symptoms. I'm sorry it is so hard for you. It is hard when your spouse puts you down. Try to find special time for you away from him now and again.

paula

Dear Shar thank you for being such a good example of caring . My suggestions are scroll down to Jean E. Miller,s post subject ; "Behavior in HD Resources" She has noted a few sites that help one get ideas on how to learn techniques in dealing with pHD . Like I tell my Dad who is the main caregiver to my mom pHD , try to let most things slide , if you can . Certainly harder to do , when your in the house with that pHD all day every day ; so there are going to be times when you donot handle each situation with perfection . You just do your best . But , there is one thing you must do , you have heard this many times , but, it is true ; take care of your mental and physical health FIRST . That is not being selfish . All my best. db

Shar, you sure have a lot to deal with. I hope your children come around to testing. You must be a VERY strong person. I have already planned to hide the meds in my daughter's food if she doesn't take them. Because without them, there will be no reasoning with her.

Congrats! There has got to be lots of love flowing for a marriage to last that long! The people on this site are awesome. Come here when you can. You can learn so much, and meet so many cool people. As I have said many times before- I don't know what I would have done without these folks.

Hi Shar, your story is so moving. When I started having trouble in my marriage when my husband's meds no longer worked for him (he has mental health problems), I broke down and cried all day and thought about dying. My brother took me to the doctor when it was so bad, and from there I began going to a psychologist and getting some meds myself to help with depression. It helped so much! I was able to deal with my husband and find a solution so that we can live lovingly with each other. I learned to set what the psychologists call boundaries. Either your husband takes his meds, or he will have to leave and live somewhere else. Or whatever. My solution turned out to be that my husband has a rooming house room where he lives part of the week, and part of the week he comes home for several days. It has helped us both to become independent yet loving. by the way, I am the one with HD and I expect some of the problems I had with hub. were due to my nervousness and depression of HD. I hope you find help to find your answers. Group therapy is very helpful, too, as you talk with others going through similar problems.