my husband has been diagnosed for 5 years he is 59 he does nothing all day but sit has no interest in doing anything then when I get home from work he wants to go out because he's been in the house alone all day. He can't drive anymore. So we usually go out to eat places like burger king or ihop then he wants to go somewhere else doesn't want to come home.. says he needs to walk but I am tired so after a short trip to wal mart head home and over the last couple of weeks he has started making these weird noises all the way home. he is very antsy all night can't seem to sit still and just complains about being full and hot. He is on serveral medications and I asked the doctor about these things just says its the huntingtons. He also seems to be sleeping a lot longer we generally go to bed around 10 and he has been sleeping until 11:30 or noon. So now his pill schedule is gettig all messed up he takes pills 3 times a day. Has anyone else run in to these kind of things I just get so uptight with him sometimes that I go to bed before him just to get away from him.

Hi Diane,
I deal with these same issues everyday. My husband is 45 and completely disabled. He does nothing but sleep and sit in front of the tv all day. I used to try and motivate him to do something but have given up. His balance issues make it hard for us to go places, he gets tired easily, his social skills have declined and he makes very poor decisions. He is angry because HD has taken so much away.

The noises can drive you crazy. He doesn't usually realize it so he has asked me to tell him when the noises are getting on my nerves.
As far as the medication schedule we just spread it out during his "day". I used to stress over it but have decided I can't do that anymore.

This past winter was tough for us. His chorea made it impossible for me to sleep in the same room. I was so tired and taking it out on everyone else. He didn't like it but I moved into the spare bedroom. It's amazing what sleep can do for a person. He still thinks I will move back into our bedroom and instead of arguing the point I'm just going to continue staying in the spare bedroom and eventually he'll realize thats just the way it is now.

What I've noticed in my house is that behaviors, sleeping patterns and routines seem to change with the seasons. I don't know why but would assume its progression. Hang in there. Get some sleep and take care of yourself.

Thanks for letting me know I'm not the only one having these kind of problems. I too have decided we can't sleep together anymore because he keeps me awake and I have to work full time. I just wish he could have some quality of life but he has none as things go now. His balance is also very bad but he still is able to walk and we do go out to the stores but I just cross my fingers and hope he doesn't fall into something and break it. We got a power chair for home because the doctor thought that he should use it during the day when I'm not home because he falls frequently and I never know what I'm comig home to. But he doesn't want to use it insists he doesn't need it but once in awhile he does but not very often. I try to tell him its just while he's home alone so that he doesn't get hurt because if he falls and gets knocked out he will lay there until I get home. He is just so stubborn about everything. Says he feels embarressed to use it he's embarressed also because he got a handicap placard for parking. I really have to watch him in the parking lots because he always walks with his head down and never pays attention to things around him like people backing out of a parking space. He tells me all the time that he feels bad because he hasn't done anything all day but when I try to give a small job like maybe cleaning out the car or running a shop vac around the garage he never does it. He'll check email on the computer but that doesn't hold his attention to long. He doesn't really like to watch tv to much some days I come home and he is just sitting there with no tv no music or anthing. How do you keep your sanity around this.
t

It must be very hard dealing with everything that you are dealing with. I'm in the early stages of hd, but i can understand how exhausted you must be. Have you thought about just laying down a rule, that instead of going out every night, pick two or three weeknights that you would like to go out, and the other nights are stay at home nights. Just pick certain days, say which days those will be, if he has a schedule and knows that, and be firm about it, i think that will help you so much. And the other thing is, perhaps some anti depressants would help him, and maybe they would help him do more in the daytime when you're at work? With hd, more needed sleep is part of hd. But there are probably some meds that will help his agitation at night too. Welcome to the forum

has your husband tried fish oil? Ithink it really helps with my movements.
Laura

It's nice to find others in the same boat.-doesn't seem so lonely. Hubby diagnosed 3 yrs ago and 59. Sleeps alot, doesn't do much, has problems walking. I try to keep him going a few different ways. (oh, yeah-we sleep in separate rooms most of the time but I tell him it's because I don't want to disturb him when I get up for work.) Anyway, I "pester" him about keeping his weight up and his diet. I ask him if he's checked his blood pressure/heart rate everyday-he has a low pulse rate. I tell him he has to stay in the best shape possible so he can take advantage of any new treatments. We have 3 dogs who also "pester" him-feed the dogs, let the dogs in, let the dogs out. He still takes out the garbage and washes dishes now. At first he wanted a keyboard to play - money down the drain. Then I got him interested in model airplanes. He needed something to show for his time and effort. He enjoys that, computer games, and TV. A year ago he was making the noises, grimacing, and becoming short tempered. (We stopped going to Walmart after the third time he made a scene yelling at me.) I read on this board about Abilify and the noises, grimacing, and temper trantrums stopped. It's the only med he's on. Once a week we go out to eat but he's sleepy afterwards so we don't stay gone too long. When I'm at work he's not allowed to cook on the stove-microwave only. No showers or baths while I'm gone and he must keep his cell phone on him at all times. It's worked out pretty well so far but there's no doubt it's frustrating at times. I hate to put it this way, but I threaten to have someone come in if he doesn't follow the rules and he doesn't want that. I have good neighbors who look out for him too. It's tough-my work has become my social life. I'll be honest and admit I have some resentment but then I remember a time when the shoe was on the other foot. I was ill-he took me to every drs. appt and every test. I was bedridden and couldn't drive for months. Our son was 12y/o at the time and Hubby had just started a new job. He took care of everything and was very instrumental in my recovery. He never complained-not once. It's just my turn now. BTW, I still gripe at him like I always did-I'm afraid he'll worry excessively if I get too nice.

Diane, I'm glad you've found some good people to talk to here. I hope it helps to share your thoughts and worries.

Audrey, I really like the way you think. It must be very hard at times but you seem to have a great outlook and way of dealing with what life has thrown at you as a couple.

Best wishes to both of you.

Thanks for the suggestions. My husband is on xanazine for the chorea and is also on welbutrim and serequel for depresion and moods. He is sleeping more and more today he got up around 1:30 I guess. Then instead of morning meds he took his evening ones. I use to keep his pills in a pill holder for the week morn lunch and evening but he started messing up so I went to single day marked morning afternoon and evening. I don't know what I can do next except see if I can get someone to come in for a half day or something to give him his meds. Sometimes I think he is just on to much but I know he has to be on something because before he started taking the welbutrin and others he was very aggresive and had violent outburst to the point that I was beginnnig to be afraid for myself. I can relate to audrey and the kekyboard thing because I bought him a playstation 3 after he saw it at my brothers and thought it was neat and he told me he would play it if we had one but money down the drain he played maybe 3 times and then only when I was here and pushed him to play. Now the only time it gets used is when I try it. He seems to be very unbalanced today don't know if its because he screwed up on the pills or what. How often does your husband see the doctor. Mine goes usually about every 4 months. But seems like a waste of time doesn't really do much sometimes he changes his meds a little bit but thats about it. we've been telling him about the way he is in the evening but nothing seems to work he added another clonazapan he was taking one in the evening and now 2 I'm starting to think that might be why he is sleeping so much later. Thanks again for listening

I was afraid of Terry a year ago too. A couple of times he balled up his fist and remained silent when I asked him if he was going to hit me. I was really scared-totally out of character for him. That's what got me looking into meds. I can not emphasize enough how much the Abilify has helped us. He had just started having tremors in his hands which also stopped and he's on a very low dose-10mg. He skips his med once in a while- I think it's sort of a rebellion thing- but I can always tell. Of course he doesn't feel well if he doesn't take it so it's sort of self monitoring. Like me, he has his good days and his bad ones. I just try to be very observant and if a pattern seems to be forming then we address it. He's been a little depressed lately so I have to work a little harder to keep his mind occupied. He was watching the news 3-4hrs a day so I've severely cut back on that and substitute America's Funniest Home Videos as much as possible. We might watch a drama but I make sure he watches a comedy before he goes to bed. He likes to read WWII books but I make him read something light before I'll get him another one. It's all a balancing act at this point. Now that spring has sprung I'm pestering him to get out and water the grass and trees. It's something he can do sitting down most of the time or do a little at a time. I'm trying to lose weight (again) and tonight he made me supper. I told him potato salad was not on my meal plan so he made spinach for me instead. I smothered him with appreciation and told him how much he was helping me. It really makes a difference for him to feel appreciated. He was glad when he quit work but he's at the point now where he's learning he has more value than just a paycheck.

I don't pretend to second guess a dr. but have you talked to his dr about trying some other meds? How bad is your husband's chorea? Terry doesn't see his neurologist very often either and his dr leaves his meds up to me. He might suggest I research a medication or I bring in information that I've found to try something but he goes along with what I suggest. He asked me to research Xenazine but I felt the possible depressive side effect was not worth it as Terry's chorea was relatively mild and his depression was more severe. The dr knows I only try Terry on something new on the weekends when I can be with him. He also knows I'm in a better position to observe any adverse or positive reactions. When I suggested the Abilify I kept careful watch and was very alarmed that Terry fell a couple of times until I went back and found it is an initial side effect of the medication and resolves itself after a week or two. He hasn't fallen again but the experience has kept me on my toes when it comes to looking for possible side effects. You are your husband's best advocate. You know him best. From what you've said I think you know that you might need to look at his meds a little more closely. Huntington's is not a cookie cutter diesease and don't feel that there is a cookie cutter treatment........yet.

My husband is bi-polar. So is his cousin who eventually got divorced and married his psychiatrist. My husband is also narcissic which I finally realized when Oprah had an article called the narcisic Lover in the late 90's. He is terrible with money and also ways gets some job which requires long hours from an adoring boss and no pay. When we finally went on Disability I had an income every month. His psychiatrist refuses to speak to me so a team approach is never possible. I think she could do a better job with meds. It is like living with immoral Peter Pan who is addicted to his cell phone. His cell bill is between $250 and $300 a month and I make him find the cell money from his adoring boss. He has no understanding of myy budget and helps himself to money whenever he gets my bank cards because I pay all the bills. 33% of our income goes to car insurance, house insurance and dog insurance. We have a rent subsidized apartment. He has been sleeping more and more and had car accidents 3 last year. I mentioned the excessive sleeping to everyone because i'm sure its his meds. This winter he had parking ticket which he forgot about and stole my bank card to pay it at the end of the month when I have so little money. Then he had a panic attack and took two of my lorezepan sleeping so deeply he looked dead. I decided if he was it was good riddance. However he woke up the next day and was a mean bastard most of thee time. His shrink lets him have 2 lorezepan to sleep. He also wakes up in the middle of nights, watches porn on the net and feeds himself breakfast, at 3 to 4 after I've gone to bed.

For a year I commented on sleeping hubbie, then I started taking pictures of Ross sleeping and sleeping and sleeping, and those picture got him sent to a sleep clinic, so keep your phone or camera handy. He did not have narcolepsy but his legs move 100 times a minute all night long and he has restless leg syndrome and is now taking l dopa for this.
I decided I was not getting in the car with him if he had taken any lorezepan that day. This started last year in Montreal when we normally drive to the ocean in Maine or Mass and we did not drive any further.

Norla my housemate for a while also had RLT which she inherited from her father. When we were first married he used to lie on his stomach and kick his foot giving himself gout. We celebrated an anniversary in a tiny motel with water bed before there were stabilizers and I got seasick.

then he goes to a caregivers support group and talks about my aberrant behaviour.

there is no question that I get madder now but hubbies causes it often. His latest personailty sits while everyone works, leaves food out on the counter which goes bad and gets annoyed at needing groceries.

He also met another woman who has alzheimers just like his mother and he drops me to go help her. Considering he did not give his own mother and love or kindness, left her with me and w ent off and helped dad at the cottage. She 85 nad has just got cancer I hope she dies soon and that my 31 year old daughter gets cured instead.

The point to this is that you get through life not easily, and y'a gotta have a sense of beauty and humour, or there is no point to your life.
So if you can only see negatives in living with
HD spouse perhaps you should get divorced because HD only goes one way but takes a long time. If you are seeing everything about HD ass bad,y you are not providing love or the ability to laugh. If you hangg on for some reason,


When I got stoned on my 60the birthday it was so nice to laugh and laugh something that anti depressants and anti anxiety don't do.

I have noticed that the men with HD tend to park until they die.They also are bigger and have more strength.

Stop expecting the HD spouse to do chores. If you don't want to do them he does even less. People with HD spend their lives falling, Sweeping takes the whole day, planning sweeping takes the whole day,and what do you have a floor that get dirty again.Suggesting fun things like art, gardening or music or bird watc hing. I know from managing 4 kids that it much simpler to do what you want done yourself when you feel like doing it.

Dusty you funny! I love the stories.

I can relate a lot to the postings above with spouse's that have concerns of their Phd appearing to be "bored" or just watching TV all day. I too am dealing with the same concerns and some of the exact same situations. It's a stage as a caregiver we are going through also. I give suggestions of "chores" my spouse can do while I'm gone at work- if he wants but, when I get home and ask what he did for the day and he says "nothing", I ask if he had a good time doing it? and he says "yes". Well, then all is good, he had a good day and so did I. Those of us w/o HD think we'd go CRAZY if we had to sit at home all day and do nothing. It's good to hear from a Phd that maybe, just maybe doing nothing is a good day for a Phd. I do wish an ability or interest in a hobby was a possibility but that's just not going to happen either. Maybe just a walk in the park would do, doesn't cost anything and no expections to deal with other people or society.

Dusty, you do put it in interesting perspective though. Thanks!

For Diane, it must be very hard to adjust to being a caregiver from being a wife in a somewhat equal partnership. I think it takes all of your love, compassion and a huge dose of humor to make a go of it. You're still trying and that's worth something.

For Dusty, I enjoy your stories and perspective so much! Keep em coming! (here's to getting stoned on your birthday)

Take care,

Carla

Well it was another really bad day for him when I got home he was just constantly walking a round the house not slowly but fast and he would go to sit down anywhere like the top of the kitchen counter. He was just acting really strange today I kept asking him what was going on all he kept saying is we need to get the kids to go back to church. Our kids are grown and live 3000 miles away. He kept telling me he loved me dearly and wanted me to tell his sisters that he loved them too. I was thinking about taking him to the emergency room but he didn't want to go kept telling me that he would settle down. took till early evening for that to happen somewhat. As far as him being happy to just sit and do nothing he's not happy about it Thats one of the things he complains about daily is that he didn't do anything. He's not all that interested in Tv and doesn't read much anymore. Just doesn't have any reall interest in anything. As for the Xanazine before he started taking it his chorea was noticeable and he was having some trouble eating with a fork or spoon kept dropping it. Since taking it the chorea is pretty much gone. the dr dropped him 2 25mg to 1 aday but then he put it back up after about 3 months because he thought it would help with his restlessness and his movement was more noticeable with just 1.

I think doing nothing all day is the worst thing to do. HD is a kinetic energy disese and if you do something, it burns some of the energy and it is easier to sit still. My own bright brain program is very active. First I play solitaire 5 times on the computer at the start of it holding the mouse is hard, then repeated attempts make the mouse easier. Solitaire was originally put in computer to developed mouse skills in fun way. Then I delete the junk email which is more mousing skills. Then I went to facebook and read and play games, plus HDAC.

Recently facebook dumped all my pictures which took a lot of work to put there, clearly making space for advertising, the games have so many ads that finding the game without clicking on ad is difficult. All the videos are taking twice as long to load nad they have to stop and stop, again due to too many ads. Now you can only type two lines without the text getting f up which is a real annoyance, and I'm thinking seriously or moving on frm FB due to too many ads . FB wwas about people having something on common and that is been chucked out. I have enough trouble writing without .

I bought my own Mahjong game for the computer which is fun. I am also working on a family tree and spend many hours a day doing that at ancestry.

In spring summer and fall I get out with the dog and a walker, In thewinter, I'm inside. I

I cannot read books due to head movement but I read on the computer about anything.

I want to do this program, not Ross or the kids, sso I do it. My only worry is that I'm going to age with better intelligence than my friends who did not have MIL with Alzheimers or a mother with HD. Brright brain programs have to be done daily, throughout your life.

I also play the piano and am putting things in doll house book shelf and trying to through out paper.

I totally understand what you are saying Diane. I went through all the same issues with my husband. He was diagnosed 3 years ago and is now in a nursing home. Last Summer was awful. he had become angry and violent. He ended up having a reaction to one of his meds in November and was in the hospital for 2 weeks. I am really nervous right now because the nursing home has been telling me that He doesn't need to be there. I have 3 kids, one is only 5 and it would be dangerous for him to come home. My husband also went through a period where all he did was talk about going to Church. I found that funny because the kids (The older ones) and I went for years. I was even a Sunday school teacher. I could never talk him into going. I'm sure it had to do with the fact of being diagnosed with HD, but he obsessed about it. By the way, when he had the chance to go, he would say not today.

Very well put Carla -- it is an adjustment. I finally faced up to the fact that our relationship has evolved from an equal partnership to me being a caregiver in some ways. He is still able to live by himself (no choice -- he had to move out when my children became frightened of his behavior), but I worry for how long. I am emotionally drained, and have no one who understands the situation. His children don't want to know anything about HD, so they are of limited help.

Today when I got home from work he was asking me what kind of things he was saying yesterday he thought he remembered being kind of out there but wasn't sure what he was saying. He is still very unbalanced today and when I got home he was still not dressed but said he got up around 11:30.

Diane,

I hope you're encouraged to know that you're not alone. HD changes relationships and really our whole lives. I am inspired by everyone here to stay observant, pro-active and as positive as possible.

When the chorea and the extra noises started I thought I'd never get used to them, but I did and now along with my husband hardly notice. Little obsessions, long hours sleeping or in front of the tv, sleeping separately.......we've dealt with them all too. Honey-do lists are a thing of the past, but he's usually willing to jump in and help me with a project. Those constant adjustments are the key and that's what keeps us on our toes. Writing notes in a daily journal about how my husband's day was (along with all the other details about changing/skipping meds) helps me track whether "bad days" are just random or if there is some consistency. It's also helpful for when we're talking to the Dr. about medication changes and is just one little thing that helps me keep my sanity. :-)

Hang in there........you're doing great!

For me the chorea is not so bad, except that I miss the snuggling -- now it's kind of like being in a car with no shocks. And I can't sit close to him when we watch TV, because he tucks a foot underneath him, and his foot movements are hard enough to bruise. Little obsessions would be OK, but he really only has one obsession (that I have cheated, am cheating, or will cheat) and I never know when it will rear its ugly head (am right now waiting for an explosion based on an innocent comment I made last night) Since we no longer live together, honey-do lists are not really an issue, but he gets endlessly frustrated when something goes wrong at the house and he is not here to help, although when he WAS living here, those sorts of things never really got done because of the HD, his frustration just adds a new and different layer. Constant adjustments are a for sure -- every step of the way. My mantra is "just remember it's not him, it's the HD", and sometimes that's all that keeps me going.

Tracey,

My son Tim always sits with a foot tucked under him too. I wonder if that is a stabilizing thing.

Carla