Hello,
I'm new to the blog world but am taking a step to help cope with my husbands HD. He got tested to confirm his/our suspiscions about two years ago. We keep the topic quiet mostly but as i see him every day restless, stumbling, it becomes harder and harder for me to deal with and was wondering if anyone could give some advice how to handle things and how to not look so glumly upon our future. We have 3 beautiful girls, and I'm terrified for them. I've read a few blogs about embarassment, etc and at times i do feel a little of this and don't know really how to handle all of these conflicting emotions i have for my husband and my family. Any tips are helpful.
Thanks

We 'r' Tips, here. Welcome to the forum. I think if ya stick around things come into perspective better and better. You are just a person. One who will feel about everything there is to feel with HD around. That's normal... and ok. Even being a little embarrassed publicly from time to time. That won't last long. But it's ok while it does. After a while you won't sweat the small stuff as much. And learn to be self forgiving too. HD is nothing anyone likes.... it takes time to cope with the dislikes of it but you will. Just remember HD isn't your fault. Nor can you make it all better for you, him, or everyone else all the time. Again that's ok.... you will get better understanding your role. Sometimes you will have responsibilities and sometimes you will have rights... and once you get those sorted to your satisfaction things settle down a bit. Keep reading... asking .... and participating with your take on stuff. You will be surprised how much you know that you didn't know you knew.

Welcome to the forum

Welcome!

Has he started any meds, like antidepressants? When I first started my symptoms, before anything really happened, my dr gave me a low dose of antidep. and I feel it helped me from the beginning to cope better as HD progressed. I haven't had any real strife yet, 15 years along, though my meds have increased and my life has constricted.

Welcome to the forum . db

I am so sorry for the reason you are here - I, too, found this website almost 6 years ago to the day for the same reason. Wish I/we could tell you it will get easier but it won't. Being 'embarrassed' and ashamed because of how your husband 'acts' or IS, in public, sadly, is So normal. Then, you get mad and get to the point that you have to help him and become his 'defender' and take care of him. Never feel badly for how YOU are feeling because it is part of the process to absorb this horrible news and deal with the change that now is in your lives...............

I don't know whether or not you had ever heard of HD before your husband's diagnosis but still, it is SUCH a shock- why me, why us? So, ANY emotion or pain or thought that you are now having is 'normal' - if there can BE a 'normal' with HD, period. We are here for you.

You are losing 'life' as you knew it and the test of 'until death do us part' and '..in sickness and health' become your new mantras as an HD wife..

Thank you all for your words of encouragement and support. My husband is on a low dose antidepressant and that seems to help him keep stable with his emotions. He's a very good natured person and has vowed not to let this 'thing' get him down and for that I am proud of him. I finally went to my regular doctor and she gave us a few things we need to work on over the next few months and referred me to a support group in my area which all i need to do is get my nerve up to go, for i'm sure i'll just cry the entire time. But i guess in time it will get a little easier.

My husbands family used to talk about his grandmother having HD but of course really didn't know anything about it. Then his dad got tested for it and was positive. My husband felt the need to confirm our suspicions and get tested, that was about three years ago. My biggest fear is simply my children and dealing with all of this myself. His movements and comments are just chalked up to being silly right now. My oldest daughter commented the other day (she's almost 13 and our neighbor just had a baby and their just so happened to be a baby commercial on) she said 'I can't wait till i'm older and can have a baby". and frankly i did everything i could to not leave the room and cry.

We've agreed to wait until the kids are adults to discuss the situation with them, but my doctor has mentioned we should at least say that he's got something that makes him fidgety. It is hard when we are out in public or with friends (who don't know about his HD); I had one friend comment that she thought she was making him nervous cuz he started pacing and flailing his arms. This seems to happen as he gets nervous or anxious about something. Many times I just lay my hand on his leg or shoulder to calm him a bit, it sort of works.

I guess my growing fear (and I know I need to live for today and not what the future will bring) is how our life will be hindered by all of this. We have grand plans of travel, etc but at this point, will that ever be? The things I read about HD make this disease sound so terrible, but my father in law who is +70 and still living and driving on his own seems to be holding his own. Is this an extreme circumstance? Much of what I read is that by 50 HD patients are incapacitated. Is this common? My mother in law passed away almost 7 years ago so sadly i can't see first hand what their life would be like with it.

We never knew HD was in our family until my FIL was diagnosed in his 70's. He too was fidgety and people thought he was nervous. I know that the CAG can give you a clue about onset, but even that has no hard fast "rules" since some people with lower ones (typically the lower the CAG # the later the onset) can get early symptoms and even people within the same family with similar CAG's can have very different onset. Many feel that supplements help (such as fish oil, blueberries, creatine...type in "supplements" to search this site and check out some earlier posts by Will and Sara).
The whole telling the kids is really tough. Some feel that the earlier you do it the better since they'll have time to process this and understand it. Also to not feel you kept secrets and if they plan to have children they will be able to check out their options for having them HD free. I have a young son and I DREAD trying to explain this. I think what your doctor said was wise about planting the seeds now that there is something going on. I think if I was an older child or teenager I would notice something and be resentful if my parents weren't being straight with me. But other people feel you should let the child have as stress free a life for as long as possible. I feel when my son is a bit older I will need to tell him. I morally won't feel right keeping this information from him since he is at risk and this all affects him.
We have told no one in our family (altho some know my FIL's diagnosis). We don't want the info out because of insurance, job etc. Keeping such a secret is really stressful. I spoke with someone doing a study and I cried and cried out of control because it was the first time I had discussed this. It was such a relief to tell someone. But then I clammed up later because I really don't want this info out...it's very scarry stuff especially in regards to making sure no harm comes to my son... with the at-risk status info getting into the wrong hands. I probably should see a grief councilor. Keeping things bottled up really isn't mentally good to do... I do feel a sense of mourning when I think about my wonderful husband loosing the essence of who he is.
I guess my post is a bummer....I think you wanted support. Sorry if I further depressed you...I guess I'm having one of those days. I actually feel lucky in many regards since my spouse isn't really affected yet. Just keep reading and checking older posts in this website for some good ideas and other perspectives. You will find you are not alone! There are a lot of promising treatments on the horizon. I feel the supplements have helped. There are a lot of positive attitudes and many wise people here...many of whom are pHD's so your husband might like to read too.



Edited 1 time(s). Last edit at 03/31/2011 01:35PM by eve.

I personally feel that you can look at families and get a sense of how the HD might play out . What I have been fortunate to see in my family is pHD living out their lives into their late 60's and 70's and 80's and 90's . I realize that many do not have that experience , but , I do . That is not to say those with HD don't have symptoms and problems in my family , because they do . Judgement is impaired and their are other symptoms . That is not to say that there are not those in the family who have had symptoms at younger ages . I think living as healthy a life as you can , preparing all medical and legal directives ahead of time ; Making advance decisions on how someone will "step in" if the pHD makes a bad decision ; or I should say before that wrong decision goes through . You know , the major stuff taken care of and talked about . Then live a normal life as long as you can . That maybe for a very long time or a little less . These are a few of my thoughts , others can add some more insight . All of my best . db

Welcome to the forum! You will find great info here and great advice.
I heard a mom saying people would stare and be rude sometimes. So she got a shirt that said "I have Huntington's Disease, what's your problem?" She said it went a long way. I have decided when my chorea gets to that point I'm getting one in different colors to wear each time I go out.
Just a thought,
MElissa

HD progresses differently in different families, and in individuals. We have been told that in my boyfriend's family it is typically late onset -- late 50s or 60s. He is 74 and still able to function fairly normally -- at least he can still maintain that illusion to people not around him every day. His sister and her daughter, however, are the family "exceptions" because they both developed symptoms earlier in life, and the HD progressed much faster. From what I've read, later onset can progress more slowly.

Hello everyone, just joined and I guess I'm feeling a bit overwhelmed.
Situation:
Sibship of 3.I am 48 and tested neg in 1996. Little sister, 43 tested pos in 1996. Older sis tested pos in 2008. I looked after Dad until he died in 2001. HD took Grama and two uncles already.
Little sis moved in with me and hub last Sept. Step-dad in moving in at the end of May to help. Okay do-able.
Then I get a call from older sis, she has left her husband and is in a hotel. I had not seen her in a year and half, me and hub load up the van and drive the 15 hours arriving two weeks ago and let me tell you, holy !@#$. Her soon to be ex is a bolthead and she has a 6 year old son. She has shared custody right now but she can not look after herself let alone her and child.
As much as I believe the child has a crappy father, he needs to stay. I am on good terms with him by keeping my mouth shut.
I will become her guardian next week and will begin dealing with stuff. HD has been under gag order in this little family.
Her son has been much misinformed and the bolthead has zero compassion and understanding.
I plan to take her home and care for her, the whole extended family is in agreement and will help.
The issue is the son, how exposed do I have his to his mom. Right now we will stay until he finishes school at the end of June, get sis settled during the summer and travel back for the beginning of school for a few weeks then we plan on doing some travelling with sis and do the things she would like to do while she can. I plan on setting up a webcam so they can still visit for now.
I have told the son just the basics about HD but have not told him that his mom will be leaving with us. He loves his mom but has been influenced by bolthead and can not be left alone with her for both their safety. He is not a respectful child.
I would love to cut ties with son and bolthead but feel like a !@#$ for going there.
I guess I'm just needing to vent and looking for a solution to an impossible situation.
Any comments would be appreciated. Thanks!

Hi Colleen, you attached on to someone else thread so I'm not sure if everyone will see your post
I'm not sure how to fix it.
II'm glad your there for your sisters but I really worry about her son. what does your sister want.
and how bad is her husband will he be beating the kid. six is very young.
and will he even take him?
when my kids were six they were like babies to me.
I think the fact that he is so bad is a sign of how unhappy he is.
Laura

you could try opening your own thread and pasting your comments.

I'm new to forums and didn't know that I had attached to someone else's thread. I find the layout confusing, where and how can I post so everyone can see it? I roamed through the topics and picked one that seemed to fit.
I worry about her son too, no fear of beating but he is impatient with the boy and indulgent. she would like her son with her but can't handle him at all.
I don't leave him alone with her. After I get him ready for bed I call to my sister so she can read him a story or two, I hang on the stairwell and listen in case I need to step in, which is often. He has such disrespect, I am sad for my sister. I would have to prove him unfit to take over as guardian.
I just don't know if I can do it all. I feel guilty that I have chosen her over him. He does have a dad and grandparents, my sister has no one else.

in some forums this would be right but in this one you open your own thread with the new button on top.

it sounds like your doing the right thing.
it might be easier for them both if they still maintain some contact.
Laura

Should I start a new thread and cut and paste?
Thanks for the info and encouragment.

I think it would help I'm worried I'll be the only one who will see it.
good luck