Last Thursday we had the test results, Positive for HD. Honestly it was a shock even though I knew it was probably coming. Now i'm really frightened of what is to come, I don't know if I will cope. John, my husband just can't take it in. The apathy he has about the condition it absolute. I don't know if thats good or bad.

Welcome! I am sorry about your husband's diagnosis. You definitely have a long road ahead. My husband also has HD. You have found a great place with a lot of caring people to talk to.

Hi -
Welcome. My husband also has HD. He was diagnosed about 1.5 years ago but sensed it for a while. It certainly threw our lives into a tailspin but dust has settled and we are getting back to living. My husband couldn't deal with it when he first suspected he had it but what seems to have helped him is meds, supplements, therapy, fear of being losing his family (our marriage almost fell apart) and time. This is a wonderful place for info and support. It has been a huge help and comfort to me - I hope it will be to you too.

Also, there is a TON going on in terms of research for treatment/cure. It gives me some hope and that helps a lot.

Hi and welcome. I was here a while back and now have returned. My husband also tested positive and we may now just be seeing some symptoms. I struggle sometimes with staying in the day, if you will, and not projecing into the future too much. It is a delicate balance and somedays I readily admit, I lose. But this is a place where I can read about what is going on research, get some positive stories and when things are negative for people see the strength and support they get from others. There is lots going on these days in research and hope that there will be treatment or cure....as Hope2 said...it helps alot to know that.

My husband was diagnosed two years ago. Yes, it is terribly hard to stay in the present; but when I find myself drifting off into "the future" - I stop myself by realizing I'm not "in" the future, I'm slinging myself into my own projections. So, all I can say is that I constantly keep after myself to "be" in the present moment. And that is slowly becoming a challenging place. But, what else can we do?

My husband is in denial. So, when I have tried to discuss my concerns, he has accused me of "making him sick" when, in fact, he isn't "sick" at all. There is no space in our lives to actually talk about how he is changing because he believes he is the miracle child of HD - he's not symptomatic at all in his own mind even though he's taking meds for chorea.

He sends emails to his family crowing that he is not declining and telling them a cure is just around the corner. He doesn't want anyone to know he has HD; but his walking gait and his social behaviour is becoming odd enough that people notice that "something" isn't right. Yet, he won't tell his closest friend nor "allow" me to get the support I need from my friends because they might "tell" or they might look at him differently.

It's hard.

My husband can't see whats happening to him. He is refusing meds because "his symptoms are not bad enough". Its not denial I think, it looks like part of the condition, he just can't see it. His driving licence is the big thing. He has had it suspended, but is trying to get it back. He has no idea how bad his driving is now. I can't tell him, it just makes him cross. When he was told what he had, all he wanted to talk to the neurologist about was the return of his licence. Its so hard.

My husband has had HD symptoms starting about 17 years ago. Had I had access to this site or even known about it - it would have helped
tremendously on many levels - understanding of the illness and medications to help.

We have done fine and I wouldn't trade our lives for any others. My husband has been afraid he could lose me but I have reassured him that
I will not be so easy to get rid of. I have told him I have hope due to research and if all else fails that I plan to get help in the home in the future.
I try to keep him active and he goes almost everywhere I go (I still work). It is very good for him to get out.

One thing that was hard was for me to convince him to try a medication. He got on an antidepressant many many years ago and that made
an awesome difference. He was put on zyprexa a few years ago due to changes in behavior and that medication has worked wonders for him
and thus for me.

I would miss him immensely should he not be here with me. What I am trying to tell you is as HD progresses you will need to make a few
changes and medications will help him greatly. Try to think of actions as not being his but being the illness. Try to have compassion as much
as possible. I am not perfect and I am not as compassionate some days either. Our lives have changed over the years due to HD but they can still be good, much with the help of medications.

On the driving try to ask him how he would feel if he were to injure or take the life of someone dear to him such as a child, relative or
friend, or someone else's child, etc. Let him know although you know he wouldn't have meant to have done that - that he would have to live with that the rest of his life. Let him know that there are two of you and that you would be able to take him where he wanted to go.
If all else fails I would get help from your neurologist, dr or local law enforcement. Let them know the issues and see if they can help you
convince your husband that it best he not drive. This is an area I was concerned about with my husband. He was so worried about losing
his license or having the dr take it away. Then, one day, after not driving for sometime he drove to a haircut appt. When he got out he handed
me the keys and has never driven since. He has told me how hard it is and I have emphathized with him as I can't imagine how hard it is but
I have told him that there are two of us and what one can't do the other can help with.

This is a very good site for questions, opinions, understanding, medications to use, to be able to converse with people in the same boat that
understand the situations better than anyone else.

Good luck to you.

I know how you feel, my mother the first in the family diagnosed at 70. she was still active and very positive, we went to my caravan, she enjoyed holidays to portugal,to 78 , although we all heped, me and my son try to remain positive, i am59 and my son is 35, he has a good job even give him time off when he has low mood,i have been a nurse, so too busy to think, ihave done voluntary work for twenty years,the elderly, now they help me.i have low moods . my son and idiscuss this i now take anti dpressants, helps alot. you and your husband to focus on something it really helps.do you work or plan a holiday,even though my son and i suspected we had the gene it still knocked me sideways,you have to try to rise above this and be positive with your lives and plan the future , my husband also had a stroke seven years ago and has not worked since. as my husband says, there are a lot of worse things in life. my brother did not have the test he and my family are in denial,
keep smiling, Red.

Shar,

What a beautiful post.

Carla

Agreed. Shar, I have referred back to this post many times on my "bad" days. What a beautiful post, thank you so much for this. To see a person face challenges with grace and love, not perfection..is inspirational. Thanks again.

Shar,
I agree with the others . . . very beautiful post and encouraging and uplifting to many people dealing with HD in their family.

Thank all of you for your nice comments. I am only a person like all of you. I have the same emotions, ups and downs as all of you and I definitely am not perfect. I try to look at things as a glass half full rather than half empty. This forum has been a lifesaver for me as well and
so many wonderful people on it including all of you. I don't know what I would do without you.

I hope all goes well for all of you. There are bumps but there are bumps in life. My husband and I have been together for 42 years. The body is
getting older but inside the body and the mind are as young as ever. Someone commented the other day about some older people - they
were my age and I thought, "oh my gosh, where did time go, it is happening to us too" although I don't think I am "older" but what do I know.

One thing about getting less young each day is that I look at things differently sometimes - it is easier to put things into proper perspective and
realize the small things in life are really the big things.

I am so fortunately to have my husband, my children and their families and all of you.

Have a wonderful 4th of July weekend all and thanks for always being there!

Sharon