Hey - My fist posting but we are in a bit of a transition and it is a rocky one.

I need some advice on how to handle this situation.

My wife of 20+ years is showing some signs - we were testing initally 14 years ago under an assumed name and she is positive. Recently we outed our status by being tested again under our insurance. Have prepared everything (insurance etc.) prior to our initial testing.
We are very close have been together since our teen years.

We are now mid forties with 2 teenage boys and my wife has changed. She is much more moody, quick to anger, extremely forgetful and has minor speech changes. We began an 20mg of Lexapro over a year ago with ok results but she has no intimacy desire. She does not even touch anymore. We use to hold hands and be very physcial and it is not there. With the other changes she is not the same person I married.

We are changing to Wellbutrin with the hope of a better outcome. We do love each other and are comittted but our frustration with these changes has resulted in arguments and very harsh words - much from me.

I am scared, sad and feel an overwhemling sense on weight to carry everything on. My fear is that the best years are gone and we have to reconnect and roll with the changes but have hit a bit of a roadblock.

Can anyone offer some suggestions on how to cope. We have agreed to begin counseling with an HD therapist and our MD at UCSF will I am sure help.

Thanks in advance to any support - Peace

Sorry to hear you are posting here...

But welcome to HDAC.

Coping will continue to be your biggest challange. I wish there was more I could offer, however in my similair case, medications have not been continued.

Your comment of not touching any more is also same with me. Even if wife should stumble, it is better to let her, than suffer the consequences of touching her.

Maybe some of the others here can offer you adice as they have for me over the years.

Hi Joe,

Sorry to hear your news.

My husband has just begun with symptoms and I feel overwhelmed by the prospect of what is to come.

Everyone on here is lovely and I know you'll find the strength to carry on through their help and advice.

Kathy

Meds are a great help for your Phd, but they can also be a great help for the caregiver also. I'm on Paxil Cr and after many years, now up to 50mg and also Buspar an antianxiety. Not only does my ex have HD and our 2 adult boys are at risk but my husband's ex has HD and we take care of her in our home and my 2 step children are at risk and our grandson. I could not cope knowing all my loved ones have this blasted disease without my pals Paxil and Buspar~ PLUS my online friends are my backbone! I hope you will soon feel that way also Pat



Edited 2 time(s). Last edit at 09/14/2008 09:45AM by mrspatwolf.

Thanks for the responses.

I have an MD appt in the next few weeks and will address the med question. I do thank you all for the quick responses and feel better just seeting these.

With our 2 boys at risk and my wife showing symptoms I feel the like weight of the world (theirs and mine) are resting on my shoulders. She is still working but I can see the stress of this on her and think the time will come soon that she may stop.

Thanks again ~ Joe

Hi Joe, just wanted to say hello and welcome

Louise

Welcome Joe! Your wife's moods remind me of what my wife was like during her onset of HD. After you get her retested, and begin care under a neurologist, you'll find there are much better meds for HD that will help her moods. Our neurologist has found the right ones that manage both her moods, and chorea, but your neurologist may find a completely different set of meds. Each HD situation is different. Just make sure you get a good neurologist, one that both knows HD, and has experience with others who have it.

No doubt, you must feel overwhelmed, and the prospect of what the future holds must seem impossible to endure. But please know that unlike the HD patients from years ago, the neurologists know so much more now, and can do a lot to address the symptoms. This will be very helpful to you, to her, and to your family. I know it's not the answer, but you'll find a lot of support out here as well. You're not alone!

HD effects to one degree or another all aspects of life eventually. This includes your sex life, and all the lesser intimacies. Sometimes it increases and sometimes decreases over time. Moody and irritable doesn't lend itself well to hugs and kisses. Also remember that she will be going through menopause at some point also. And guess what? You would possibly be going through this without HD in the picture. In all cases it's not her fault. You had better be prepared for these lifestyle changes. Welbutrin does tout itself as not interfering as much with desire, but it isn't a aphrodisiac and if she has an underlying cause for loss of interest, the medication switch won't help. Apathy is often a symptom of HD and it will show itself in this aspect of life as well. Don't take it personally, and realize it's not a conscience choice on her part nor anything she can change even if you point it out to her. You will have to accept this and be satisfied with the ways she is able to show her affection in smaller ways.

joe,

hi, do you live in the bay area? let me know how you like your neurologist will you?

anyway, you'll need all the strength you have, and all
the love you have, to face the future...
we learn to appreciate everyday dont we?
always trying to figure it out...

welcome joe



Edited 1 time(s). Last edit at 09/14/2008 02:24PM by skmf12.

Joe it's nice to meet you. I'm in the early stages of hd, and just to let you know wellbutrin was tried on me, and made my symptoms much much worse, but i do know of others that have done well on it. Wellbutrin is actually an amphetamine, and can make agitation much much worse. And also, i don't remember the science on this, but marsha does, and Dr LaVonne, has also said that wellbutrin affects the dopamine in a negative way for hd, and is not recommended for hd now, whereas seroqul risperdol and zyprexa effect the dopamine in a positive way, and not only help the symptoms, but are actually good for hd. I personally would ask your doc about seroquel for your wife, because it is a mood stabilizer and also a mood lifter. I really think that might be worth asking about. I would also ask about memantine. My symptoms compared to 4 years ago when i was diagnosed, are almost none, and a lot of that is to do with the memantine., and for whatever reasons i dont know, i just know i feel very fortunate to be where i am today as compared to where i was 4 years ago. I know it was hard for both me and my husband to start with, he would get angry when i would show symptoms, and i think it was because he could not accept it yet, and it was hard on both of us. A change like this really just takes time to get used to, and i know it's hard. Your wife might also want to get her hormone levels checked too, as eric said, menopause could be playing into things, and would be good to look into that. Nice to have you here Joe.



Edited 1 time(s). Last edit at 09/14/2008 08:52PM by Barb.

Five years ago I could have written verbatim much of what you wrote. We were prepared, but you can't prepare for the losses. You just can't.

From experience I would say get counseling for yourself. Not sure that couples counseling will work. It didn't work on onset for my hubby and I. And that counseling was way early in symptoms. Even then, five years before diagnosis everything was my fault and my responsibility to change so any tips the counselor offered were mine to take and his to ignore.

The year he was diagnosed, I went into a deep depression when the realization hit that the good times were gone. It felt like mourning his death, our death. That is where counciling help me along with the panic I had about the future and all the responsibility.

My husband is on wellbuterin,he had problems with the extended version. He takes wellbuterin so he won't have the side effects. That is important to him so I don't argue the choice of the drug. As Barb said, he has had aggression issues but other meds have helped that.

Five years into the serious symptoms and I still don't have the argueing under control. I am told it will happen but I guess I have a lot of fight in me. It stinks when the kids are around and we do it. I am consideirng counseling again hoping for some anger management tools. But that seems like another chore to do.

Joe, I want to add a note to Barb's, as she and I both had adverse reactions to wellbutrim and positive to memantine. I would encourage you to try memantine, as it subtly straightens out my mind in some way to make me feel more like myself. I take Prozac (for depression), Estrace (for the menopause), memantine, and at night some Trazodone to help sleep and add results to the prozac. I am doing well on these. My desire is strong, which is sad since my husband recently died and I'm so lonely for him, only him. My anger is almost non existant. I think it has been replaced by apathy. yet I do things like volunteering and exercise and therapy. If your wife leaves her job, the stress level may go down a bit, I agree. Every individual is different in this disease but there are also many similarities between us. I hope you find help, not just for her, but yourself.