As anyone experienced changes in sexual interests that seem related to the progression of HD? I appreciate that this is a very sensitive area, but it is an area in which I need some help in understanding what may be happening in my marriage.

Here's some of the sexual problems that I have heard about over the years:

1. Caregivers lose interest in sex for a variety of reasons Some are obvious such as hygiene problems or unpleasantness related to their spouse's self-centeredness. But there's one major reason that's a little more subtle. One of the things that happens to most caregivers as a natural course of the disease and their own changing role is that they become more like 'parents' to their spouses. For many, intimacy becomes impossible because they require an equality in the partnership to feel comfortable. As Carmen has said, being firm is the best way to deal with this.

2. The Phd spouse loses interest, but the caregiver wants to continue intimacy. This may happen because of the disease, because of medication side effects, or because the Phd thinks that he or she is no longer attractive.

3. Phd spouse wants to continue having sex with his or her partner but loses the ability to perform or achieve orgasm. Again, this could be the disease or the medication. It can result in the Phd blaming the spouse for not being attractive or sexy or exciting enough. I know two wives who are well endowed whose Phd husbands insisted that things would improve in the bedroom if they got breast implants and a Phd wife who insisted on putting a sexy movie on the VCR in the bedroom during sex! Sometimes this problem leads to demands for novelty. Novelty often does work for awhile when people have sexual problems but it's often a temporary fix. Sometime the demands are something the caregiver is fine with such as changing positions or wearing sexy lingerie. Sometimes however, the Phd spouse makes demands for things that are best left to fantasy. For example, I know both a man and a woman with the disease who were insistent in their demands to have semi-public sex because of the excitement generated by the idea that they might be discovered.

4. Disinhibition and lack of impulse control can lead to behavior that the caregiver cannot tolerate such as demands for the spouse to participate in something he or see finds distasteful or immoral, running up huge bills calling for phone sex or visiting porn sites on the Internet, visiting prostitutes, infidelity, promiscuity, and molestation. I've talked to a number of adult women who were molested by Phd fathers and one woman who was molested by her mother.

Not every person with HD experiences every symptom or problem, of course. What I've tried to do is cover all the possible sexual difficulties that HD families have reported experiencing.

I think another thing is that the Phd might have a hard time concentrating for long enough

This is always a topic that is hard to cover... because ya don't what the nature of the problems are from couple to couple. Each couple has their version of normal... and that will change over time with HD. It's not any different than an aging couple may experience as well. Things change over time. It happens to be premature in the case of HD. I think I found when things changed from an act of intimacy to just an act of sex, it became inappropriate to express ourselves that way. All in all, as a cover-all answer, HD changes many things in all of our lives and this is just one of them. As things progress from being equal partners, to spouse+caregiver, to predominately caregiver, intimate acts we were used to having need to be replaced with other forms of intimacy that are not sexual in nature for most of us. Marsha's points are spot on, and are reasons for changes. In my case things just didn't feel right anymore in that arena. I realized too that they couldn't be repaired either because any thing that might be a resolution would be fairly quickly obsolete due to progression of HD.



Edited 1 time(s). Last edit at 03/08/2010 02:26PM by Eric.

One thing that bothers me as a caregiver is my PHD's attitude. He's developed a social awkwardness and says inappropriate things. It's like having a special needs teenage boy who blurts out whatever comes to mind. When I don't respond, he gets nasty. The last time we were intimate he put his hands around my throat and said things that I will never forget.

At that point, it was over. I will not be bullied into sex or have my life threatened over it. I put up with nasty comments on a daily basis and do my best to tune it out. I know its the disease and I still love the person I married but I've had to accept that he is already gone and because I do love him, I'll continue to care for this person.

I'm not a wife anymore. I'm a caregiver....and as a caregiver the intimacy is not appropriate anymore.

well when i was with my phd husband, sex was good, and when it wasnt,
everything else wasnt good either, and i left... i was very young than.

relationships and sex, in non-HD relationships, often end up the same
way... either way, its sad when it happens... its not just an
HD problem...

Yes Susan, sexual tensions or dysfunction happen aside from HD affected couples. However I would say this is HD specific, and needs to thought of in this way. The original question was about HD and the sexual relationship. Someone else may head to a marriage counselor or doctor with reasonable hopes of resolving issues, while with HD this may be an unreasonable expectation. I do agree it's sad, or frustrating, or even at times unmanageable. Sometimes it's disinterest in sex, sometime it's an over active interest in it. I think the difference I have seen with the people who I have discussed the issue with is that changes are fairly abrupt and don't make sense in the context of how the couple was normally beforehand. It also can be directly linked to HD as opposed the the problems the average couple might experience over the course of years and seem somewhat understandable and as a couple they might or might not work on it by choice. It's always the non-pHD spouse who feels the responsibly to reconcile the issues as well, in a way that works for both people. Marsha talked out this question on her caregiver webinar nicely also.

My husband and i are in this same predicament. I am gene positive but have no symptoms. I have depression and take Lexapro. I have lost my interest and he has not. We tried to change medication but that did not work so we will try one more time to change my meds in a couple of months. It has caused alot of stress and frustration on both our parts and we have not really figured out a way to handle it well. I wish he would not make it into such a big issue and he wishes I would. I think part of the issue is that he makes such a big deal. We have a solid and strong marraige and that really is the only real issue we have.

Stacy-NJ

Stacy, that's interesting that Lexapro is a problem for you. I tried Zoloft years ago and lost all interest but Lexapro doesn't have the same side effect for me. I was surprised since they are both SSRIs but apparently even that small change in medication made a difference for me. I hope you can find the right medication that will relieve the depression and have no side effects at all.

I fall into category 1 of what Marsha was saying, my PHD is still very interested in sex, but its me that has the problem, I feel so much like a parent to her that its difficult for me to feel that same intimacy that I felt earlier in our marriage. I feel very sad for my wife but that doesn't make it any better. Hygene also plays a role. My wife used to be very spontaneous and it was exciting early in the marriage, but as the disease has progressed its impossible for her to be that way, so I would always be the one to initiate the sex and that puts a strain on our intimacy. I have considered trying viagra or something to see if that would push me past my mental and emotional block, but I'm 31 years old and its hard to use this as good reason for a dr to prescribe it for me.

Philip

eric,

this place is sneaky...lol..

it makes you want to divulge secret feelings locked up for
years... its easy to come here and feel comfortable enough
to work thru complicated memories... dont ask...

i love you guys, thanks for giving us this place.



Edited 2 time(s). Last edit at 03/09/2010 12:30PM by skmf12.

I am not sure how much is the Lexapro and how much is it just being such an issue. Very stressful for me and he does not realize how much. I am also worried that it might be very early symptom.

Stacy-NJ

Phillip, it kind of depends on what you are looking to fix. A desire for sex and a desire for sexual intimacy are not the same thing. Viagra would help with the first perhaps, but maybe not the second. Whatever is going on in your head and heart, Viagra won't change that. It may just change your reasons for abstaining from "I can't" to "I don't want to." There was a cut off point for me as well. Hope you get a little more comfortable with a new normal with your wife, It's not your fault there is a need for one.

I feel like I'm walking on eggshells here with this subject and my PHD. On top of being the full time everything now I really can't deal with the nasty attitude, the stupid comments and the stress it brings.
I have shut that door, he wont. I've told him and he gets nasty. It makes me wonder if its time to add stronger medication.
Its one thing to deal with the physical issues this disease brings but the mental instability has me stressed and questioning if I can stick this out.

Yeah, the instablilty, it does that alright.

Okay,

Well I really don't like posting my stuff on the internet, but since I had such problems trying to look up anything on this subject for phd's myself over this past year. I'll forego my privacy and tell you what DIDN'T work for me and my spouse.

It was all at once that my phd hubby lost the desire and stated he just didn't think of sex hardly at all. It just didn't cross his mind. No ability either. Brought the subject up with the doctor and he said try Cialis. It "barely" worked only 1 time and that was the 1st time and after that it never worked again.(doc said it should also help with desire-it didn't) Next visit we told the doctor that it didn't work and we wanted to have phd's testosterone levels checked and they were low as we had read that many phd male's levels are low. Doc was willing at our request to give testosterone prescription. Unfortunately, after a couple of months of this hormone supplementation this did not work either.

Phd hubby will ask occassionally "do you want to have some fun?" and I say "sure, when you think you might be interested let me know". He hasn't yet and I think we've come to a mutual agreement that it's just something we won't be pursuing.

I have also gone to the non-returnable position of caregiver and I don't think the physical relationship is anything I care to pursue with my spouse. I don't see this ever changing due to the role's we both now play.

We're settling for contentment.

This has been my first experience in seeking help from this community and I am overwhelmed by your sharing. Eric referred to Marsha's valuable caregiver webinar. Is that something I can access now (okay, I probably revealed what a Luddite I am). I will share your insights with our therapist. Thank you so much. With gratitude.

Well here is Marsha's webinar...

[www.hdsa.org]

However she covered this issue in the q qnd a portion of it which is still missing. It's still a good thing to listen to. I will contact the office and see if they can't get the other portion on there too.

Has anyone else had trouble listening to the second webinar? I get a little of it then just a high pitched noise.

my husband phd kicked me out of our bedroom 4 years ago then wanted me back recently. i had a hard time with it, but did some nights. i slept in the other room due to work he would loose it lets just say i still didnt sleep i should of stayed in the room. now hes selling our house and divorcing me (like he divorces me every month)because i havent slep in the same room with him this is after 20 years of a long marriage

Snookie...thanks for askin' the question.

I was curious to see the responses and then be ok to say my own.
Being the PHD... I feel I have had more of a high libido...before I knew i had the gene even. This could be that my husband at the time had a low(er) libido... but I still think I had/have a higher...need.

The current situation is that, of course, the HD has caused the marriage to go into the crapper... so everyone wants what they are not getting...right?

I recently discussed with a PHD friend...who I feel bad that I obsess over this with, but initially I whined I just wanted someone to have sex with. Then I was contacted by an old friend/boyfriend someone I had been with before, 200% comfortable with him...I have nooooo interest.(but thank god, he is still interested. Helped the self esteem because he knew/knows the HD situation and My dad)

Part of me is hoping I am not being a total sap holding out for another PHD to be with that will understand... I am not looking for a relationship-- but it would be nice if I am going to "BE" with someone to have some meaningful memories.... but since this "offer" has come up... I realized it's NOT the sex.

I am so happy to have friends...and in this friend especially that I bitch to all the time-- I don't care about anything relating to myself (rare) ...romantic...not... doesn't matter. I just want to hang out and be around with this (so far only person) who is in my position for a little bit. I want nothing but to hear things that are happy for him... I want him to find someone in the future...be happy... but whatever, I will just be a friend. I am ok with that.

Sure, I may feel like I need to get my rocks off sometime, but it has suddenly become a non issue once I knew someone was willing to. Ha. Ha.

Sounds kooky - that's me.

~ Laura Q.