How does one cope with the rage that seems to go along with hd. Is it just here in my home or else where. Sometimes I feel I'm living with many different personalities. His anger is more rage and can be very scarey. He attacks our son and myself to the point I fear for our lives.Its seems he is driving everyone away. We can be in public or at home when he just goes off. I'm learning I can't share much with him anymore because he goes of like a bomb. How does one cope. He is on welbutrin and resiperdal but he still rages. Sometimes I feel like I'm dying too. How do I deal with this? Any help or info. would be a blessing. I don't see myself as well. I'm being destored in the process of this disease. Thank You for being
Paula

As the chief said - "I feel your pain". In fact, many do. My wife's rage is what drove me to the Internet to seek relief. The first thing I was told that it is very common for those that have HD to drift toward the extreme of their natural personality. Although there are many exceptions, those who are prone to anger will most of the time start having extreme fits of very irrational anger.

You may have found like I did that logical arguments don't help. I soon learned that if I didn't argue back the degree of "the spell" would diminish - although it didn't go away. I also learned that there were certain "trigger" points. If my wife is tired and hungry - the risk of a fit occurring was increased. If she is embarassed the risk increased. If she was both hungry AND embarrased - I was in deep doo doo. If you've never had anyone yelling at you to the point that they were foaming at the mouth then you've never experienced an HD induced anger. So if she says she's hungry, I stop whatever I'm doing and feed her. I try my best not to put her in embarrassing situations.

I've had her yelling at me in restaurants. It often seems like she picks the times when she can most humiliate me - but the flip side of that is that it may be the times when I am most careless with what I say or do. I do need to keep remembering that it's up to me to "manage" her anger. She can't. In fact she denies that she has HD, much less that any of her spells are anything she needs to control.

You first need to make sure that you and your children are safe. It's very tough for a female caregiver to help an abusive pHD spouse so make the right decision - even if it's very tough and painful. There are MANY wives who have had to make the decision to separate from their husband. They often still love and many continue to take care of their husband but they do so in a more controlled and safe environment.

My heart goes out to you. Take care of yourself and your children first and then take care of your spouse. Please e-mail me or join us in a chat if you need to blow off steam yourself.

Steve

This is my first time replying to anything on this site. I come here frequently to read the things that people have written, but have never responded. I feel that I do need to response to the issue of anger. I am 39 years old and tested positive for HD in Sept 99. I have been living a nightmare ever since. I feel that I have been givin a death sentence that no one should have to live with. No one can completely understand what goes on in the mind of person who has HD. Not even the people closes to them. I was a very happy and independent person before this all started. I am married to a wonderful man and have two children ages 15 and 14. We had the test done because I was showing signs of anger that we knew were not normal for me. During this past year I have many bouts of anger. Usually after my husband does or says something to set me off. When they first started happening I didn't know how to control them. If they started in the mornig the entire day would be ruined because I couldn't bring myself out of the bad mood the anger had put me in. Lately I have been learning to control them once they start. I find that they most occur when things are changed on me. If I have my day planed and my husband decides to change it or throw something in that I didn't plan on, that is a big set off. So now what I do is tell him that one is coming and to please help me stop it. We sit down and discuss what set it off and after we do I am fine. More then anything after they happen I am so mad at myself for not being able to control them and making my husband and my kid's life miserable. The guilt, I'm sure all HD people feel, is one of the hardest things for me to deal with at this time. I brought this disease into our family and will have to live with that for the rest of my life.
Lynn

Lynn,

Thank you for sharing your story. I too am married to a wonderful man and have two children. I have never been tested but am thinking about it. What made you decide to be tested and do you regret it?

Kathy

Lynn,

I am so very impressed with your decision to mentally fight against the neurological source of your anger. It is truly incredible! You must be a terrific person.

My son has "rage attacks" brought on by a brain hemorrhage he had as an infant. Even though we all understand that the anger is neurologically based, we also understand that his ability to cope as an independent adult balances on his ability to control his anger.

Medications don't always work, so, even though it is not at all fair to him, he must muster up his fighting spirit and work against the rage when he feels it building up. Sometimes he walks. Sometimes he can't stop it, so he tries to get the episode over behind closed doors and away from others. Sometimes nothing works. When that is the case, he takes it out on the person closest to him. That's me.

It's not fair to him and it's not fair to me, but it happens sometimes.

It helps him to realize that these rage attacks are not his fault, but AT THE SAME TIME it helps him to realize that it is his responsibility to control them as much as possible. It has taken years of "training", so to speak, for him to reach the point of "acceptable" levels of rage.

I don't know if this would translate over to HD or not. I do think that the more open people are about having HD, the more they are able to understand the source of some behavior problems. Knowing that, everybody can work together to at least mitigate the emotional effects of this awful disease. Better to try something constructive and fail than to give oneself permission to open the floodgates of emotional volatility, using HD as the excuse.

Willpower is no substitute for medication, when needed. If one medication is not working, it is worth it to try switching ((under a doctor's care). I just think it helps to try everything, including facing the anger, to dull the harshness of the emotional stress that comes from neurologically based anger outbursts.

salt

My mother and my grandfather both died of HD. There are four of us kids. And so far I am the only one, thank God who has it. I never in my life believed that I would get it. I basically went through my life with blinders on. I didn't know what the first signs of HD were. I didn't know that the anger and depression came first in most cases before the physical symptoms. When my anger started last year I still didn't associate it with HD. I just thought that I was feeling a little stressed just coming back from Germany (my husband is in the military), buying our house and starting a new job. I thought I was over loaded. Then in August of 99 I started to research HD and learned about the anger being a symptom and became terrified. I needed to know. I never told my husband about the anger being a symptom because I didn't want him to worry. He didn't want me to have the test done. He tried several times to talk me out of it, still not knowing that at this point I was pretty sure I had it. Then when the test came back positive. We both just cried and I ran out of the doctor's office and into the bathroom. I just kept thinking what have I done. I don't want to have this information. It was to much for me to handle. Do I regrete having the test done? Yes, every day I do. Because that little bit of hope for not having it is gone. And now everything is HD. I can't distinguise anymore between what is normal behavior and what is HD. But on the other hand I am glad that I had it done because I can now get on the test studies for finding new treatments and finally a cure. If I hadn't found out I wouldn't be able to get in the programs. I wish you luck with whatever you decide. But think it through carefully. Because you can't go back and change it. I really thought that I was going to be able to handle the news. And boy was I ever wrong. Email me if you need to talk.
Lynn

Salt,

Thank you so much for saying that about me. You have no idea how low your self esteme drops when your sick. I am so sorry about your son. We get so wrapped up with our own problems that we forget that other people are suffering too. When
I first started having the anger last year I did the exact same thing your son did and ran away to be by myself. But I found the longer I was by myself the more time I had to think about the anger and what had brought it on and the more I became anger to the point where I would just stay in my room all day just not to have to deal with anyone. Well that was not solving anything. I did try anti-depressants, for one day. They made me feel so out of it I stopped taking them. How old is your son now? I also do the same thing and take it out on the person closes to me, my husband. Every night before I go to bed I apoligize to him for anything that I did or said throughout the day to upset him. He just laughs and says stop it, it's not your fault. But it is my fault. I keep telling him to get rid of me now because the worsed
is yet to come.(Only kidding) We are all human and don't always do the right thing. But you are doing the right thing for your son, by stand by him and not giving up hope that things will get better. That is what he needs more than anything right now. Please don't give up even when you feel the lowest. I thank God everyday for my husband. I hope he knows how much I Love Him and how much I appreciate him standing by me through this past year. I would have never made it through. And I couldn't make it through the rest of the years without him. I pray that your son will get better soon. I know how hard it must be for you. Thank you for responding with your story.

Lynn

"Music hath charms to sooth..." It may seem trivial, but sometimes nice music, turned on when I feel angry or nervous, almost instantly affects my brain in a good way and sooths me. You all might try it. Anyway it won't hurt and may do a tiny bit of good. Also I think anti-depressants take a couple weeks to really help you and the woozy feeling you get at first will go away. I think anti-depressants can help enormously. I would be crying all day and very irritated at everything if I didn't have them to help me. I like to read comments from those who have HD. The comments from those caring for people with HD are scary. I hope I don't cause too much trouble for my loved ones, too, as the years pass.

Thanks.

My son is 19 now.

salt

Dear Salt,
Thanks so much for writing.It made me crying and made me feel good at the same time if that makes any sense! I have three sons,my oldest is 23 and not my husbands,my other two are 19 and 18.My oldest and youngest are in jail.My husband has been very angry for our 20yrs of marriage but I always believed in my vows.As I look back at my view towards his angry Ifind myself repenting and asking for forgiveness. But my children took the angry to heart and ending up on the wrong road. I pray for restoration in my family through this. My husband and I have. We're realizing how presious each other is.And I'm finding it an honor to beable to bear this burden with him and that in the pain of it all is healing and many areas that wouldn't have come about if not for hd.I believe all things will work out for the good even when the rest of the world see's it as bad.

Hi Lynn thanks for showing me to this site. It looks like a place where I am going to find people that 'really understand me" and I hope one day I can help someone in return.
I just feel like nobody understands me nor tries to. I don't want any pity, just some love and support from somebody other than my husband and kids would be nice. I have a best friend that has been the only person to honestly want to help me through the tough times, and wouldn't you know my luck, she has just been diagnosed with having a late onset of muscular dystrophy recently.
Now I am finding I am trying to help her in return, but I am angry because I have lost the support I needed in her, that makes me feel guilty, and angry that I again lost out in the game of odds.
I tested to hd in 97 three months before my father passed away, and I lost my mother the previous year, so things have been difficult in the greiving department too.
I suffered severe depression and after seeing a councellor for some year or so, things didn't seem to get any better, so she suggested it might be the hd causing it and if it was I would need more professional help.
So after all the councelling before testing we still didn't jump into it straight away. When I felt I could cope with it, I then went ahead. I knew all along the results would be positive....guess what?...they sure were.
I since have headed down the path to nowhere, with nobody. My husband is terrific though, but he just doesn't seem to understand how I really feel, why I get angry and can't seem to control the anger and I wish I could show him just a little of what it feels like for me.....I do feel possessed by the devil, I try to walk away, but I don't anymore, I used to but I find I just want to keep hitting and throwing things.
I took off to the bedroom and began to scratch my body until I drew blood last time, then I went off in the car to my warehouse and slept there for the night until all hell had passed over. Now I have three confused kids to try to explain why their mother is ' weird' They are avoiding bring friends over here anymore, and I can't blame them because that's what I did with my father when I was growing up. I never knew from one day to the next what he would do or say to any of my friends.
As for Christmas, well this goes on every year. I sit at home with my kids and we spend it alone, knowing that family and friends are all joining in together having a great time.
I feel for my husband and kids, they are missing out because of me. My sister invited me over last year to her place, but when I rang back after talking it over with my family she had a change of heart and told me we couldn't come now as her husbands family were invited over instead and she couldn't have us all there together.
What made it worse, was that just before that I rang her one day and told her I was angry with her and the rest of the family for keeping their distance from us, and her answer to that was that I push everyone away. She doesn't know if she has the gene or not, and won't be tested for a long time away if ever.
Our older brother has the gene like me, he is 48 and we keep in touch from time to time since we live over 9 hours drive away from each other.
Well enough of my chattering going on and on here, will be writing a novel next....lol
Thanks to everyone who has posted here, really helps know u all care....god bless

Dear Lynn,

My heart goes out to you. I am a 37 year old mother of three precious angel girls. I tested positive with HD in 1996. The first few years was the tougest. With prayer and friends who understand what I'm going through..I've been able to make this a learning life experience rather then a death sentence. If you would like to chat..just drop me a line. I'd love to share with you. Take Care and God be with you always..Sunshine Cindy