Hello All. Where do I begin? I'll just think out loud I suppose. My husband was diagnosed with Huntington's Disease 1.5 years ago. We did not know it ran in the family at all until his father tested positive for the gene after a few years of acting strange etc. His father's repeat is 40. Most likely whoever gave the disease to his father (His mother or father) did not know they had it or had a low count so it did not show up later in life.

I was at work when I got a text from my husband saying his dad has huntington's disease. I, like most people, had no clue what that was so I googled it. I was shocked and felt beaten down. we had just started talking seriously about having children. I was 32 at the time. I'm 34 years old now. So anyway, my husband and his sister got tested and they both are positive for the gene. His repeat count is 43. He just turned 41 years old.

There are some subtle symptoms showing now. lack of concentration, unable to multi task, apathy, etc. But he is not coping with the news well at all. I can't say I blame him but from my perspective I'm trying to be as strong as I can. I'm trying to be the rock and it's not even BAD yet (not like I know it can/will be). We are not in denial. I am trying to have us live the rest of our "good days" as "good days"...not focusing on the negative, what's going to happen. He feels so guilty. He's angry. He feels it's so unfair. which it is.
He has always battled with depression (that runs in his family as well). But I don't know how to get him to realize life is not over. we can still create good memories, have good days, etc. He sees a neurologist which has prescribed him antidepressants etc. those seem to help sometimes. He is a gentle, loving, caring, supportive husband but lately I see a lot of apathy. For example, a friend will say they had a bad day and he'll say to me "at least they don't have huntington's"....
It's so hard to live this way. I'm young. He's young. We've given up on having children which is another hard part since we both wanted children. We've though of in vetro but we do not have the money.

Oh there is just so much to say....I guess I'll preface it all this way.

My question is: how do you cope with the news of a positive test outcome? As the caregiver, as the patient? I need some tips. Please share your stories of what you felt helped your family to deal with this. I want to stay strong for him. But I need to stay strong for myself too. Thanks for listening.

With Terry and I it has been a process. I cried at first and then did what the neurologist said-"Get on with your life." As a caregiver I observe his symptoms closely. When it got to a certain point I looked into medications. At the same time I learned all I could about new treatments. If we talk about Huntington's at all it's about what progress is being made in research. There have been alot of changes in our life but there were going to be changes anyway. We just deal with them as they come up. When he quit work we got things in order-living wills, powers of attorney, etc. It doesn't happen all at once. We still have hope and we operate on "when the breakthrough comes". I monitor Terry's weight, his pulse rate (he has a low pulse rate) and make sure he takes his med. He's made lifestyle changes so he's in the best possible shape he can be in "when the breakthough comes". Lately he's even been able to get his heart rate back up to a normal range. Our life doesn't center around Huntington's but it does center around Terry. I went through a mourning process. Terry still talked about traveling at first and it was hard to keep making plans but I went along with him. We've had our ups and downs but we would have had those anyway. Our son is 25 y/o and at risk. He's been pretty accepting of what he may be facing but has also made lifestyle changes. He also suffers from depression but has accepted the fact that he needs medication. He's going to NYC soon and wil propose to his girlfriend there. She also knows what they face and has accepted it. She's preparing herself for what she may have to go through so they can have children. I guess we don't really look at the big picture but just take things as they come and adjust accordingly. I guess to us having Huntington's is more of a handicap so far. We don't look too far into the future. We're just waiting for the breakthrough. As a caregiver you need to take the best possible care of yourself too and sometimes you may need help-get all the help you can.

Best Wishes,
Audrey

Thank you for writing, Audrey! I really appreciate it. I wish that my husband could take it day by day. I try my hardest. I think we are both still mourning the future we thought we had and are scared to think of the future ahead now. He is on antidepressants but I think he needs a different type because they don't seem to be working so well lately. I am also on antidepressants as well now. It seems like he's given up. I admit I gave up for about a year but am back on the right track again. I wonder if I'm strong enough to handle this all the time. I am hoping that he can find some hope and that we can have some good days and create good memories still. He talks of suicide a lot which breaks my heart. Not as in now he wants to but he always says when it gets bad he will...he's already planned out how. I just can't go there right now. I keep telling him that.
I am happy for your son and his upcoming proposal. That is great!
I'm thinking of getting some therapy for myself soon. This forum is sort of my first step in reaching out.
My husband refuses therapy, won't even be honest with his neurologist. He is still working - He's a musician and teaches lessons as well.

I would like to keep in contact with you. Thanks, Audrey. I really appreciate it.

Test?

Swirly, I sent you a PM because I'm having a hard time posting a message on this thread for some reason. I wonder whether others are having this issue, too? (My messages delete when I press "post."

Welcome.

Hmmm, well, THAT time it actually worked. The "test" time! Anyway, I also sent you a PM. So very sorry to hear how you and your husband have been struggling, but glad you've found this forum.

Bluegrass, I tried to PM her last night and couldn't get through.Tried to post this am, didn't get through. Wasssup?
Swirly, sent you another PM this morning.

Best Wishes,
Audrey

Hi Audrey and Bluegrass,

I got your PM's. Thank you so much. Well last night was bad. He had an "episode" and while I don't know if it's depression or HD related it was tough. He had a new student (guitar lesson) and decided that he wasn't able to do it so he canceled and went straight into panic, anxiety, depression. I've started doing ZUMBA for myself twice a week and I love it. It's my time and it's good for me. he called when I was about to start and told me about how he was feeling. I made sure he would be OK for the next hour and when he picked me up he was just very upset and angry once again.

He has an appointment with his neurologist this afternoon and I am actually going with him. I'm not too sure I like his doctor. Long story - seems he dismisses everything he says and just says "oh you're fine"...plus they had a personal relationship before all of this so his bedside manner is not very professional in my mind. I'm at work right now but I'm going to be making a list of things to bring up with the doctor.

It's just so confusing as to what is HD, what is depression....every time he drops his keys, drops his phone, loses his wallet, etc...he says it's hungtington's. If I dismiss that he gets upset. I do believe some it could be but definitely not all. we all have moments like that! I really want to write more right now but need to get some work done. I will write more later. Thank you so much for being there for me. I am so glad I found this forum. I have felt so alone in this for the past year plus...I feel better already. we live in a small city so there aren't support groups here for this sort of thing. My hope is that he will be able to find a way to better cope with this as it sounds like you have realy helped Terry to, Audrey. I hope we can find some hope and guidance and "faith"...thank you again. more to come later.

Welcome Swirly,

Receiving positive test results for HD is a devastating bit of news. I think that a person goes through all of the stages of grief and it takes time. Audrey has it right when she says to take care of yourself, this goes on for a long time and takes endurance. The folks on this forum have leaned on each other, helped each other and celebrated one another's joys and successes. I always recommend that newcomers browse through the archives, there is much wisdom here.
Is there a Center of Excellence near you? Finding a doctor who understands this is important.
Hang in there, keep doing your Zumba class, keep yourself strong and upbeat if you can.

Take care,

Carla

SWILRY, SORRY!!! MY POST WAS FOR ANOTHER INPUT WITH CAG 40. Bob



Edited 1 time(s). Last edit at 02/13/2012 04:33PM by bob netx.

Swirly-

I know what you mean about second guessing every time there are lost wallets and dropped keys.. I have a symptomatic sib and an asymptomatic parent, and i myself am at risk, so there are alot of data points for me to worry on, should i choose to do so..

At a certain point in the last year, i decided i didn't really care much about why the keys got dropped or the wallet got lost. Doesn't matter much whether its depression, Huntington's, ADD, carelessness, or anything else really, as long as its not intentional, right?

So for me, what worked was focusing on solutions: extra sets of keys, phone numbers for credit card companies in the rolodex, etc etc. It keeps me from participating in what my therapist calls "anticipatory grief", since im not constantly worrying about whether this is a new stage of Huntington's. Some of that anticipation can be healthy but not at the expense of enjoying my life.

Best of luck to you, I hope this chapter turns quickly into an appreciation of the time we all have left to enjoy. Huntington's gene positive or not.

noreaster Wrote:
-------------------------------------------------------

> So for me, what worked was focusing on solutions:

That's where we're at too. I used to be a little too sympathetic to be of much use to anyone. I learned that I couldn't do two things at once-feel sorry for myself or others and find solutions. I chose the latter. Glad I did.

Best Wishes,
Audrey

I can relate to the symptom-watching, the feeling of being "beaten-down" when a new diagnosis (or realization of the existence of HD in the family) comes, and the loneliness. We have not (yet) had to cope with a positive result. We will get our results in one week. (They are probably already ready--the doctor said they'd take 2 weeks, but, to make sure we allowed enough time, she encouraged us to make our appointment to "get the results" for a date 3 weeks from the day of the blood draw. Fret! They're probably ready NOW!!!!)

What has helped me (as the wife of an at-risker and the mom of an at-risk infant) is to:
(1) read the forums and reach out for support;
(2) find inspiration in those who, even though gene-positive, live life to the fullest, benefit from supplements, maintain positive attitudes, and make a difference;
(3) read about drugs in the pipeline and try to stay on top of the latest research news (and stay hopeful!);
(4) force myself to take some time to myself to escape from HD for a while (take a walk, play the violin, read a book, get AWAY); and
(5) listen to my husband and encourage HIM to open up--when I fret, he supports me, but there's not a great deal he can do to quell my anxiety. When he opens up, I can support him, love him, promise him I'll be there, encourage him, etc. It gives me a sense of purpose. It's one of the few things I can DO. I can be a supportive wife. I can provide something. It helps, at a time when I feel really helpless.

I notice that your husband is a professional musician. I'm not, exactly (I'm actually an unemployed attorney/stay-at-home mom)--but I play in a professional band. I hope this doesn't sound silly, but, as a musician, I've taken some comfort, also, in something that our neurologist (Dr. Martha Nance) said once at a conference that I watched online. Dr. Nance said this in response to someone's scoffing at the idea that anyone has a "right" to have at-risk children (which, of course, people DO have a right to do, yet which is ALSO an issue I've had a VERY difficult time with--I would not have brought an at-risk child into the world, knowingly). Dr. Nance discussed Woody Guthrie, and his influence on folk music (and music in general), and noted that without him, the music world (and many of our lives) would be different. I know this is true. My band has covered Woody Guthrie songs. We are inspired by Woody (and Arlo, another at-risk individual). I, individually, am inspired by them.

The same applies to Nancy Wexler--an at-risk individual who has had an ENORMOUS impact on the HD world and in the world in general.

I guess what I'm trying to convey is, that now that things are as they are, the only thing we CAN do is attempt to stay positive, find inspiration in those who have (or have had) HD, yet persevere(d), enjoy life, make a difference, etc, and look at that with optimism and approach things with as much grace as we can.

I have a hard time getting out of bed without reminding myself that there's no reason that--HD or not--my son (or your husband--or mine) cannot be the next Woody Guthrie, Nancy Wexler, etc. And, even without the "fame," ALL of them WILL make a difference. In many lives. Yours. Mine. More.

I hesitate to name people on the forum whose accounts have been particularly helpful to me, because it is doubtless I will omit many, many, MANY people on the forum who deal with HD inspirationally and gracefully. But, acknowledging that this is only a very partial list, I guess I'll encourage you to look up, and read previous posts from: Will, justonemoreperson, Barb, Dusty, JudyF and Mrspatwolf, and, of course, Marsha. (There are SO many more). The accounts of these members, in particular, have helped me. (And a few of them, believe me, have even ripped me a new one at times because of some of my statements and views! Nonetheless, there's a lot of good support to be found here, and I've taken a lot of time to peruse old postings, find inspiration from them, and listen to what people are telling me in the present).

I'm so glad you've found the forum.

Bluegrass