32 years after marrying into a Huntington's family, I still can't sort the apples from the tree. Not even my husband knew about it before we married and had children. It is still somewhere between difficult and impossible to form intelligent or helpful dialogue on the subject. My husband remains very guarded on the subject and we dare not use the word in my mother-in-law's presence. We did luck into a Huntington's support group that was active around the time my husband was getting tested.

I do not know the answer to your question, but I have seen similar reactions. Dissociation and rages seem to be VERY common. At least two of my in-laws have suffered both in spades.

For what it is worth, my father-in-law is a major league caretaker. My mother-in-law is in her 80s, deeply afflicted and meaner 'n' a rattle snake. As I have watched them over the decades I have wondered if my father-in-law might have helped more with more votes of confidence and a little less well-intended executive heroism. Maybe. For sure it is a tough card to be dealt.

I saw this same thing happen with my brother and his wife. He has HD and I watched as his marriage disintegrated painfully over the years. He became colder and crueler to his wife. He alternated blaming her for his depression and illness and denying that anything was wrong with him at all. Eventually he told her to leave because she was bringing him down. She tried everything she could to make him happy, very much at her own expense. I believe it is the illness, not the person talking. I am so very sorry for your struggle, hang in there.

Hi bsqator....

Firstly I really feel for you.. it is so painful to see your loved one change like that. The best advice I can offer you is to really research through websites for indepth facts & symptoms that are more than the basics about HD. In doing this myself I found logical answers to confirm it is the disease not the person.

It is very likely the reason she is" being cold" and unable to care or see the needs of others, is because she has no control over it, the death of brain cells in specific areas of the brain cause related symptoms.

Occasional HD patients may desire and pursue excessive sexual activity or engage in inappropriate sexual behaviors . Other symptoms that affect behavior & Mood are difficulty with Impulse Control, Frustration, Irritability, Anger, uncontrolled Temper Outbursts, Apathy, Denial, unable to see the need of others, impaired Judgement, Reasoning & insight, Unawareness of Huntington's, being self centered. It is so hard not to take it personally but family members and caregivers should learn to respond diplomatically, appreciating the person's changes as a symptom and outwith their control. Also these behaviour & personality changes happen so gradually that it difficult to tell these things apart from the person. Take it from someone with hind sight that you would one day look back & see how & when it started & the person progresses further. I know it isn't a fix to your problem but I hope you have some clarity & maybe speak to a specialist about this. I really wish you & your family all the best. Stay strong x

I have been married 28 years. I knew before we got married that my wife was at risk. Over the years I have often wondered if it was her of the illness talking to me. I think it is a mixture. The illness does exacerbate tenancies. Having said that, what you describe is very similar to what I have had to deal with.

The worst thing though is the guilt I feel for wanted to live my own life. I feel trapped. Often people around me do not help, when they tell me to be strong and be there for her. WTF do they think I am doing? and please do not get on my case for wanting to enjoy a few minutes of my own life.

How odd is it that in trying to do the right thing by staying with my wife, but still on occasion going out and dancing, etc., just to be told I am being irresponsible. Yet if I was a divorced guy, I would just be accepted as one of the club.....

I would try to talk to her. My guesses are,

1. She feels she is bringing you down, and feels the best thing for you is a divorce so she is trying to start a fight with the hope of breaking up the marriage. Check out the movie Love and Other Drugs for something similar.

2. The disease has caused legitimate neuropsychiatric changes.

3. You are working too much at a time she needs your support.

Normally i would keep children out of problems but to the extent possible you may want to talk to your children to get a sense of what is happening.

im 31 i have hd. i have a beautiful wonderful wife and 2 beautiful children. i have actually done that to my wife. but under no sircomstance would she leave. its because i was over welmed and felt guilty for her seeng me like this and she worrues about my waking moment. i felt like i didnt want to be a inconvience to her or my children. i still feel guilty for having this. but she says she will never leave no mater what i say or do. my mom just passed away on march 1st of hd she was 52. she has basicly been a shell laying there over the last 10 yrs. after i was diognosed all i wanted was my faimly as far away as possible. idont want to see them suffer like we did my mom. i cry every day from the guilt of having this disease ive been spending the last 3 years wondering why my family what did i do so wrong.

No one has commented on this site since March of this year. I am searching despiratly for someone I can talk to who knows what I am going thru. My husband of 22 years was diagnosed in Aug. of this year. he has shown some gradual signs for the past 2 years but drastic signs since Aug. I was at the point of leaving him if he did not get some help. He went to the dr because he knew there was a chance because of his dad and granddad dying of this disease. of course the test was positive. they have already increased his med. 2 times and we go back Monday and I feel like they will again. the past 3 months have been an emotional rollarcoster. right now he has quit church with me and is mad at me all the time. sometimes I don't even know why. I sleep on the couch a lot. His biggest thing is his paranoid behavior. he is certain I am sneaking out of the house cheating on him. everytime I get a text or my phone rings he thinks its my boyfriend. everytime I get on here, I must be talking to some man. He has not become physical with me yet but the emotional abuse is almost more than I can bare. Is there anyone out there who knows how I feel and will just talk to me. I may need to talk once a day or a 100 times a day or somedays I just cant bare to talk. I have a lot of supportive friends but none of them really know what I am going thru. email me @ eteeftaller@yahoo.com, facebook me Elizabeth Teeftaller.

I have been married for 24 years and my husband is starting to show some of the behavioral symptoms. His sister has developed into the movements now.

Some days my husband is cold as ice. Doesn't even want to hug me and I'm use to hugging every day. He can lose his temper over the tiniest things and I have no control over what's going to set him off. I have found that just leaving the room, waiting for him to calm down. The looks he gives me and the things he says are so hurtful but I just have to remember IT IS THE DISEASE. And, I try to remember what it must feel like to be in his shoes.

I could sure use a support group, I'm very happy I found this place.

Caprice

I'm new to all of this. Many things have gone on and off in my "marriage." I am legally married, but it doesn't feel like it anymore. He has completely drifted into the abiss. He is constantly reading and seeing everything horrible that goes on in the world. Not to mention he was recently diagnosed with Huntington's. He was having muscle spasms and supposedly went to be seen, as well as had numerous tests done. It came back that he has HD and about 15 years to live. That's all he has told me. Now I have found out that I'm pregnant and I pretty much freaked when I read the test...knowing how he would react. He wants to kill it and I'm already at 2 months along. He doesn't want to have anything to do with me or the child. He wants me to abort the child and then go back to my parents. I'm stressed, exhausted, and I feel all alone. He has friends and family out here, whereas my family and friends are about 3 hours distance away. We haven't set up any doctor's appointments yet. He's been worried about all the financial and how it's going to ruin his life. I'm scared and I want to have this child. I'm just unsure of how to deal with his ups and downs. One moment he is sweet and caring and the next he is yelling, belittling, and threatening me. I feel so alone.

hang in there. my boyfriends dad has this disease and I know that certain medication helps with emotional problems ie anger, anxiety, depression. I think talking to a doctor about certain medications to help with this would be good if you have not done this already. but number one thing I would suggest is to keep fighting and don't give up on your love for your family! your partner needs you more than ever now and you know your partner best. if you religious, pray for guidance and strength. and if wanted I can pray for you and your family as well! keep your head up!

I see that last post was in March of 2015 but still I think it is relative to what and how things can be....
I have been dealing with HD for a number of years now...Gram and Mom had it...Found out after Gram died.
Got tested and had the counseling that was suggested but seemed to not help one bit.
My marriage is on the line at this time....not sure how I need or want what is in store for me...in someways I want to be left alone to be by myself so that no one I care about sees me later when things do get worse....my out bursts are because I do care.
Having said that knowing that a complete stranger around me and not having to worry about the caring aspect is big....I know that this person won't be there and I can just not think of the long haul to come. Probably sounds bad but right now it is what I am going through. I feel like a non-person in my marriage...He does work nights and that makes it worse...days are so screwed up even on days he has off. Since it is nights that seem to be the worst part of how things get for me.
I haven't had any out side relationships to date.....thought of going back to my last X boyfriend but know that isn't the answer either.
I hope this helps in someways.....just giving my thoughts.
ttfn

I am in your shoes.. My husband is so mean and demanding- he refuses to go with us, but gets angry if we leave without him. It has been a nightmare. Tonight I found him on the couch with another woman- it is so hurtful.. I kicked him out and I hate him... But I really hate the disease... The man I married would have never behaved like this... I am crushed...

I'm in the same boat. My wife of almost 30 years has HD. Mean anger outbursts. Hardly in chorea problems mostly mental. I'm basically a robot to care for her which I normally do well. But sometimes I want to just start walking. It's a trip. No fun no intimacy, just feel like a nurse in the psychiatric hospital. Med food and conversations that are off the wall. Extreme worry, or fear or some other ubsurd something to deal with. I have needs but they aren't met. No answers here..

I can't even begin to explain how uplifting this has been. My wife and best friend of 11 years was recently diagnosed with HD. She left me and my 3 children and began having affairs with other men. She saw her grandfather die of HD and her mother is currently at well into stage 2. She has so much guilt and depression and believes it's her fault our children are at risk. I acted poorly when I found out she was cheating. She told me it was like someone else was in control and I let my anger and insecurities push her away. Don't do this people! Just know, if you don't love them, get out and let someone that does take over. This is absolute hell. She's gone, she still sees the kids from time to time but wants nothing to do with me. Sometimes when I see her I can get her to talk. Like, you can get a direct line to the real person behind the disease sometimes, but if one of the kids walk up and knock is out of the conversation, I lose her at the snap of a finger and she slides right back into that shell. I don't know how to win, and I know.inevitably I will lose in the end. I just want her home so I can take care of her. It's so much more painful to sit by and watch her fall apart from a far. Best of luck to you folks. Stay in the arena, keep battling, we are all in this together!

I'm so happy that I found this post. We have known that my husband had the HD gene since 2002. AT that time, he had no symptoms. Over the years, the symptoms have been coming on slowly but he doesn't have the chorea so I thought he had codependancy or psychological issues and I was getting very angry with him. He had a few accidents this year with falling and hurting himself pretty badly and he is raging out of control and scaring our 12 year old son, who has threatened to run away on more than one occassion, last night included. I didn't realize what was going on so I was spending more and more time away from home, flirting with other men and whatnot, although I never actually had an affair. I have bi polar disorder and an in recovery myself so I am concerned with what chances my son really has of living a decent life. Every day when I leave to go to work, or if I stop to go to the gym after work, I come home and he is screaming. I only work part time and after reading this post i am thinking that I may need to scale back even further with work to attend to him. Thank you so much for this forum. Also we got connected with HDSA and that seems to be helpful on some level. They have support groups although nothing local to us.