Huntington Disease Lighthouse Families

For HD families ... by HD families

Early signs of HD?

Posted by ggrace 
Early signs of HD?
August 29, 2012 12:36PM
Hi, I have a question about the first changes in a person who has hd. My boyfriend’s mother has hd, so I guess he and his siblings have a 50% chance of also having the disease. We have been together for 3 years now and he has always has anger issues, such as saying a lot of hurtful things, shutting down and ignoring me for a day or two, and yelling. We have been going to counseling to try and deal with these issues and learn to communicate better, but I don’t think it is helping. Lately he has also been saying it is hard for him to trust me, but I have never done anything that would justify him feeling that way. He comes up with weird stories about what he thinks I do, and believes I lie about where I am or what I did that day. One day I was sick and did not go to work, and when he came home he was very cold and distant with me and then he picked up a hair off the bathroom floor and asked me who had been at our house because “that is not mine or your’s hair”, and we had a long fight about that. His thoughts just seen insane to me, like he’s delusional and paranoid. I have tried to just get past it because he has told me he’s been hurt before, so I thought maybe he just has trust issues too. But, it is getting to be too much for me to handle and I am thinking maybe his mind is starting to change from the disease. He just turned 30 and I have only known him for 3 years, so I don’t really know if he has always been this way, or if it is huntington’s. Could this sort of behavior be the first sign of hd? Has anyone else noticed this in their partner with hd? I am really scared that his behavior will only get worse. I know his dad has similar problems with his mom accusing him of cheating and such.
Re: Early signs of HD?
August 29, 2012 03:15PM
That sounds exactly like hd symptoms my husband has now and had in the past before we knew hd was in the family. He needs to get to see a doctor to confirm and to start on psych meds because it is not going to get better with just counseling. If you are willing to take on this extremely difficult journey, please keep attending counseling for you, as you will need a lot of support to get through this.
Re: Early signs of HD?
August 29, 2012 04:08PM
It certainly could be HD but what if it's not? That kind of paranoia and jealousy is not normal and doesn't bode well for a relationship. Do you really want to be with someone who thinks you lie and cheat? It's not a good sign to me that counseling isn't helping.
Re: Early signs of HD?
August 29, 2012 06:56PM
It IS horrible for our relationship, but there is always that side of me that is hopeful that he doesn't have HD and we can just keep trying to work on things. I haven't noticed any other symptoms, but maybe he is still too young. He's a good driver and he's better at video games than i am. He's a good cook and pays his bills on time. He can be forgetful and messy, but i think that is just normal. We get along great most of the time, but when he gets in that sort of mood our fights last a couple days. I can see that he is a truly good person and it seems like he only acts that way towards me. He doesn't drink because he's in recovery, so i don't know if his actions could also be attributed to that. I guess i am still hopeful, and i just can't dump him because he might have hd. I really care for him and i know that if he does have hd, he is going to need all the support he can get. He doesn't really open up when i ask him if he worries or thinks about having HD or not, and he's not very interested in going to the doctor. To djcloc: Did that sort of behavior start without other signs of hd? where those the first symptons you noticed? Thank you for your input.

Edited 1 time(s). Last edit at 08/29/2012 06:59PM by ggrace.
Re: Early signs of HD?
August 29, 2012 07:04PM
It sounds very much like my ex's early behaviour with HD. Temper, threaten me, not speak to me, imagining things I was doing, then all of a sudden he would turn around and be nice like nothing happened. This went on for a long time always directed at me. Now more recently he has started the same behaviour with my adult daughter. She said, Mum now I know what you were talking about, and described what he did to her.

I had her talk to my cousin who is a police officer about staying safe with someone who is mentally not right. You cannot predict what the pHD are going to do. It is not you and it is not something that counselling is going to fix. As Marsha said, even if it is not HD do you really want to be with someone with this level of control issues and paranoia?
Re: Early signs of HD?
August 29, 2012 07:18PM
Sound just like my experiece also.
Re: Early signs of HD?
August 29, 2012 10:04PM
Wow for a minuet there I thought was reading something I wrote, I wish I could be of help but I am in a very similar situation with my 30 year old BF whom I have been with for 3 years and could have HD. I wish is all the best I know how I am feeling about everything and I do not wish it on everyone. Good Luck!!
PM me if you ever want to talk!!
Re: Early signs of HD?
August 29, 2012 11:34PM
just like my situation too!!!!!!!!! concerned post says it all esp the last line. ggrace mood swings were my husbands first signs and only signs for awhile than his way of thinking, movements walking slowy all changed over the years .. it is a long hard life to be married to a person with hd on the entire family esp w control issues and anger issues as you stated. it wont get easier meds will help as long as he takes them my husband did for a long time and they helped and on christmas day flushed them down the toilet and now wont take anything to help him bevause he thinks he will get all the side effects and it wont cure him their his excuses and there is no changing his mind. are you married or just dating ? jw because it just sounds like a pretty tough relationship for 3 years no one deserves to be treated the way he is treating you now and most likely wont get easier HD or not. think about just you for a moment and think about if your happy really happy in your relationship . there are many ways you can be supportive even if your no longer together. this forum is always so helpful im sorry i wasnt so positive but if you ever have questions you will find many answers here or you can private message people to. good luck to you and i pray he doesnt have huntingtons disease
Re: Early signs of HD?
August 30, 2012 01:52PM
We are not married, but have talked about it. The possibility of caring for him if he did end up having hd is ALWAYS on my mind. Sometimes I feel horrible thinking about the way it would impact me, because HE is the one who would have to live with it. I even start to feel like maybe I am the one who is exaggerating and being irrational thinking every little thing could be a sign of hd.
Re: Early signs of HD?
August 30, 2012 10:18PM
Your life and well being is important too!! Or at least that’s what I keep telling myself when I think of having to take care of my BF if he gets HD. I want to be with him forever with HD or no HD but what will my life be like? What will my kids life be like? I worry all the time I'm so scared but I feel so selfish because it won’t be me living with HD, but on the other hand I will be. I want him to stand by me no matter what, even if I got sick with something. So I want to do the same for him.

Every time he clears his throat I am worried its a sign, every time he gets mad at me about something stupid I worry its a sign, every time he forgets to grab me something from the store I worry its a sign, every time he says he’s always tired I worry. Its tearing me apart I wish I knew but I don’t want to know.

I know how hard this is for you, and I do wish that you were not going through this. I hope you have someone in your life to talk to who understands how you are feeling. I am finding my closet friend and my sister just don’t understand, they say they couldn’t live waiting for him to get sick and I should leave since he hasn’t proposed to me but I cant they do not understand.
Re: Early signs of HD?
August 31, 2012 12:02AM
ggrace...WOW...we just found out last month that my husband has HD but I can tell you I almost left him several times durring our 11 years married because of the verbal abuse. I let the verbal abuse get to me many times and it almost killed me, If I had not been married to him I would not have stayed. According to my hubby I slept with anyone who was male if they were on the street or in the store and I looked in their direction, it goes on and on very bad. We went to counceling several times...he would get mad at me for something and ignore me for about 3 days, your story is so similar. My advice is...if you have kids together be careful when he is around them so they do not pick up on his verbal abuse...if no kids together and you two did not make a commitment (marriage vows) run like hell and find a happy life for yourself, because this is not a short time thing, 12 years into my relationship and just now I find out he has HD. I have a problem with resentment with him because he has always been so mean to me that now I have to care for him with loving kindness. I am willing to care for him but if it had only been 3 years, I was not married to him and didn't want a life of abuse, anger and distruction and I was strong enough in myself I would have run. God Bless you on what ever you choose to do and if you choose to stay with him we will all support you but if you choose to stay with him then educate yourself because there are sooo many challenges.
Re: Early signs of HD?
September 02, 2012 01:28PM
marlyssa your post is exactly what i wated to say but i can never put it in words . its amazzing my story is identical to yours its weird i hate that anyone has to go through life like this but its comforting reading someone else is and we can share things that people seem to understand but cant unless they live it
Re: Early signs of HD?
September 09, 2012 07:57PM
As others have said, mood swings & "irrational behavior" can be an early sign of HD BUT they can also be signs of other mental health or emotional issues. You mentioned he's in recovery, is he actively involved in 12-step programs or other types of support? As a child of an alcoholic father and a pHD mom, I can honestly say that either illness can cause that type of behavior. Neither reason makes the hurt for the people who love them okay but knowing about HD at least helps you understand that it's not about YOU or THEM. It's the DISEASE. For people in recovery... continuing to work on healing themselves after they get sober is sooo important.
Whether it's HD or something else, bless you for caring so much. Remember to care for yourself too.
Re: Early signs of HD?
September 10, 2012 03:18AM
bella: my hubby has been clean and sober for almost 30 years, I don't know if I read this or not but can a tramatic accident bring on the HD? He had a trama just about the time we got married, almost 12 years ago, he was great before we got married and the next year was hell. That is why it has been so hard for me to make sence out of this all, sometimes men change after the chase is over and they get the girl ?? or did the HD come on strong starting with the mental part about that time??
Re: Early signs of HD?
September 15, 2012 08:20AM
Marlyssa, It's my understanding trauma can cause the symptoms to surface. Don't know if that's your case. It is thought (can't be certain) that a mild head injury triggered my HD.
Re: Early signs of HD?
September 16, 2012 09:16AM
If you are not ready to spend your life with him if he is diagnoised with HD then it would be kinder to break it off now, Whether this is HD or not does not change the fact that it is a problem that is not going away or getting better and whether that is by choice or by genetics the fact remains that it is something you will be dealing with forever in this relationship and if you are not willing or able it is kinder to make the decision to break it off now. The progression of HD is such that stability of those around you in spite of your HD is something that is needed and if you are not the person that wants to spend the rest of your life walking on eggshells because of the instability of the emotional and cognitive affects of HD then leave now. The HD sufferer is not doing these things by choice. It is an affect the abnormality has on the functioning and processing that the brain does. You will be choosing to live with someone who looks and acts normal most of the time but is actually handicapped in an unseen cognitive and emotional way. Can you do this??? It does not get better. It may stay the same for long periods of time but eventually it gets worse and if you are not prepared to deal with this and plan on leaving him when it gets really bad, just leave now because leaving when it gets bad is worse for the HD sufferer even if they are bringing it on themselves . The trauma of losing the security of those that you have come to depend on is devasting for the HD person . They are unable to process cause and affect in their own relationships.
Re: Early signs of HD?
September 16, 2012 08:57PM
I honestly don't know if trauma can cause HD symptoms to begin. And I can't tell what caused the change in your husband. I'm so sorry for the pain, confusion, and anger that HD has brought to your life over the years. Unfortunately, sometimes the answers to "why" don't come. For myself, learning to find acceptance with what is has and continues to be the most powerful and freeing experiences. Acceptance enables me to move through what I'm feeling and find renewed hope on the other side.
Re: Early signs of HD?
September 28, 2012 07:41AM
Although by definition juvenile HD begins at an early age, most children are able to walk and talk at a normal age before symptoms start to appear. The signs of juvenile HD are often subtle and difficult to distinguish from the normal “growing pains” that children experience. A major sign of onset is a continuing decline in school performance. Other indications include subtle changes in handwriting, difficulty learning new things, and small problems with movement.

electrical testing and tagging

Re: Early signs of HD?
October 01, 2012 01:29PM
Hi, I guess my first post on here will be one as a devils advocate of sorts. Because altho I completely understand both sides of this disease coming from a sister, daughter spectrum, I am also at risk for having it. I am now 35 and have not been tested yet because I fear how bad my already out of control anxiety would be. I do have emotional ups and downs and all but have been diagnosed basically. I have been married for almost 16yrs to aman with great patience and even IF what I deal with on a daily basis is not HD, I know it is still a struggle to live/love me. THANK GOD I have a man who loves me and understands my health concerns and is willing to take me as I am WITH all of my health concerns.

Some of you are already complaining about people who may or may not have HD that you are DATING. So I will be bluntly honest with you. As because I have watched my father die of this disease and I am now watching two of my older sisters suffer greatly from it. If you think things are hard NOW in the early stages and with BF/GF who you are with who have not even been diagnosed yet, just look ahead 20years or so into the future. If it is hard for you to handle now, then my suggestion is do your BF/GF a favor and make a decision. Because as with a lot of other disease's in this world, they can not help who they are or how they behave they are literally wired that way. If you are already feeling resentment and or pressure, loss of hope etc. It is not fair to either of you for you to continue pretending that things will work out. It is a decision you have to gather deep down with in yourself and decide whether or not you are up for the task. Because knowing that I MAY one day NEED the UNCONDITIONAL LOVE, UNDERSTANDING and support of my husband is what keeps me going. And unless you can whole heartedly with out a doubt tell yourself you are up for this and ready for the long road ahead, you are doing a disservice to the person with HD and to yourself. If my sisters did not have myself and my other sister they would not have anyone. As what happened with my father. Unfortunatly I was a child when he became symptomatic and because I was the youngest, I was not authorized to make choices etc concerning his care. There for I sadly had to watch him suffer at the hands of state regulated/paid for nursing home care. Which left a LOT to be desired. Even at a young age it was not hard to see he was not getting the proper care that I as his daughter would have wanted him to receive. Unfortunatly, he did not have a living will or any type of paper work when he got to the point that he needed 24hr care, so that fell on the shoulders of my sister who lets just say was less than thrilled with the idea of being stuck with the "hassle" of his care. By the time I did become of age, he had been in a nursing home nearly 5hours away and somehow a man who hadnt been able to walk in over 2yrs "fell" and broke his hip. Everything went down hill from their with his health, however I was able to take over his care and have him placed much closer to me so that I could better over see his care and be with him in his final days.

I am sorry if I seem harsh or unsympathetic, however you are the one with the choice here, not the person suffering from this illness. So IMO you have to be the one who is responsible for your own well being and future smiling smiley
Re: Early signs of HD?
October 01, 2012 02:09PM
I totally agree with you. Thanks for posting.
Sorry, only registered users may post in this forum.

Click here to login