Hi Eteeftaller I too am a caregiver for my husband. I work full time. About 5 1/2 years ago my husband moved into a personal care home as it was no longer safe for him to be alone. We had home care before that but they were no longer able to provide the level of care that my husband needed. I come and read occasionally but don't often leave comments. Just the way I am I guess. Sometimes itby Lisa - Huntington's Disease Support Center
HI caring4hd, My husband too has HD and has been living in a personal care home for the past 5 years. I would love him to be at home with me but that wasn't really an option. I was in my 20's when I became the sole supporter in our home when he went on disability due to hd. Due to his needs I was unable to leave him alone early on and due to my age I still needed to work to support him/us. Homby Lisa - Huntington's Disease Support Center
I have seen the opposite. My husband can't tell when something is too hot or cold and doesn't recognize pain. He can be hurt and not know it.by Lisa - Huntington's Disease Support Center
My husband has HD and there is nothing easy about my caregiving role. He lives in a personal care home now and I will admit I still struggle. I am constantly grieving losses. Both his and mine. I don't think you are weak. It sounds like you are human and a loving and caring wife. I too cry at his appointments. In fact the social worker at his care home ensures that there is a box of kleenex in frby Lisa - Huntington's Disease Support Center
I am not you so I can't say I know how you feel or that I have gone through everything you have, but I've gone down a similar path. My husband has HD. The behaviour changes started early. The man I met who was gentle, loving, sweet, and kind started to have outbursts, challenging behaviours, saying and being unkind to me, fixated (I could keep going on and on) He went on disability when I was 2by Lisa - Huntington's Disease Support Center
Is it possible she's afraid of falling out of bed? Or could movements causing her to hurt herself by banging on rails, walls or headboards? If so maybe she needs padding so that those areas are soft. I've also read that some patients prefer sleeping on a mattress directly on the floor due to movements and fears of falling. My husband needs a side rail to prevent falling out of bed. Another persoby Lisa - Huntington's Disease Support Center
It's called dysphagia and yes it's a symptom. Changing the texture of his food and drink will probably help. Has he seen a speech language pathologist? An SLP will assess his swallowing and make recommendations that will help manage the problems. An occupational therapist is important too as they will be able to recommend appropriate adaptive equipment when needed.by Lisa - Huntington's Disease Support Center
They sell thickened ice cream for people with dysphagia (swallowing problems). It doesn't melt to a thin liquid like regular ice cream. Your SLP should be able to help you information about them. I know there is one brand called Magic Cup dessert.by Lisa - Huntington's Disease Support Center
Hi Jennie1977. Your story has similarities to mine. My husband has HD and I am very familiar with his HD behaviours. The behaviours started shortly after we were married and they can be very challenging to handle as a caregiver. The sweet man that I met and loved was changing. The man I fell in love with was sweet, kind, loving, generous, head working, valued friends and family etc. His huntiby Lisa - Huntington's Disease Support Center
My husband's toes do the same thing. They are constantly moving. I have to keep his nails very short and ensure that there are no rough spots on them. If there are then it creates cuts. He actually moves them so much that he has created holes in his shoes. When he was more mobile he would walk around in bare feet. This made it easier and the toes weren't squished. Now that he's not very mobile heby Lisa - Huntington's Disease Support Center
What kind of diet is he on. My husband was having lots of problems swallowing and moved from a minced diet to a pureed. He does much better on pureed. He also has thickened fluids. His swallowing still concerns me but it's a lot better than it was.by Lisa - Huntington's Disease Support Center
A schedule helped me and my husband. He did best when he knew what was happening and there were no surprises. For example every Tuesday was grocery day, Saturday and Sunday's were go out for coffee days. He did much better when his days became scheduled. Wake up, go to bed, eat meals etc at the same time each day. I also had to schedule time for me to be able to do things like 7:00 to 8:00 pby Lisa - Huntington's Disease Support Center
My husband has been taking this medication for many years. He is currently on 400 mg but at one point was on 1600 mg (800 mg in the morning and 800 mg in the afternoon). It really helped him. At first he was very tired and dopey but he would adjust to that pretty quickly. Each time his dose was increased he would have a short period where he was really sleepy.by Lisa - Huntington's Disease Support Center
Julie, My husband started having troubles early on with work. He had to stop driving for a living when he lost his licence. After that he wanted to keep working so he began manual labour jobs. He was fired from a lot of places because he couldn't do the work or would leave because of the stress. The last place he worked at knew of his HD status. When his neurologist said it was time for hiby Lisa - Huntington's Disease Support Center
I can't guarantee that what I think were early signs were truly HD and not just normal life issues but I noticed that he became "clumsier", had a harder time focusing and learning new tasks (especially at work), tolerated the normal day to day stresses less (became frustrated quicker), became agitated quicker. less impulse control, There are days where I could say I show all these aby Lisa - Huntington's Disease Support Center
My husband said he chose to test because he couldn't stop wondering if he had the gene. It was consuming. He wanted to stop worrying about the "what if" and instead put all that energy into dealing with the result- positive or negative. In his case he was gene positive. I think in his case it was the right decision. With his positive result he accessed medical assistance early on.by Lisa - Huntington's Disease Support Center
Alcohol was not good for my husband, even early on. I would notice that his behaviours would intensify. I had talked to his psychiatrist about options and he said that the de- alcoholized beer has a low enough alcohol content that it should be okay. I talked to him and explained that I needed him to stop drinking. Of course he didn't like it but I said that I would do it with him and wouldn'tby Lisa - Huntington's Disease Support Center
My husband would get very hot too and sweat lots. I would keep the lights off during the day and very few on in the evening. He wears shorts all year, even in the winter. In the summer he would walk around the house with no shirt on. In the winter I would keep the thermostat set low and I would bundle up in a sweater. It seemed to help him. He has a harder time in the summer months but with airby Lisa - Huntington's Disease Support Center
Hi, I was 21 when I met my husband and he was 28. We had been dating for only a few weeks when he said that he needed to talk to me. That night changed my life. It was the night that he told me that he had huntington's. He had been tested a few years before and knew that he had the gene. He too tried to push me away and would do so numerous times throughout our relationship. My best friend grby Lisa - Huntington's Disease Support Center
Audrey, One thing I found helpful was to make a new routine of something for my husband to look forward too. I knew that whatever I picked would be something that I needed to follow through with even on the days I didn't feel up to it. So when he was living at home I designated a time in the evenings that I would sit with him and watch whatever show he wanted. And on the weekends I would takeby Lisa - Huntington's Disease Support Center
My husband also has swelling. It's called edema. We had to get compression stocking to help with the swelling. I would request that they have the physician look at his legs. My husband also continues to gain weight. I'm unsure why as his eating habits haven't changed. I have wondered if it is do to medications. Lisaby Lisa - Huntington's Disease Support Center
Blue grass lady. It's possible that you are doing the wink unintentionally. If you type a semi-colon ; and an end parentheses ) together it makes a wink smiley. It has to be done with no space between it. When you post it the smiley face will show instead of the symbols.by Lisa - Huntington's Disease Support Center
Hi, I've been reading this from the beginning and have wondered about sharing my thoughts. Finally decided too do it. The way you feel is the way you feel but sometimes we have to find ways to deal with those emotions so that we can carry on with our lives. Otherwise these emotions take over and prevent us from enjoying not only the small things in life but life in general. My husband hasby Lisa - Huntington's Disease Support Center
Thank you. I was hoping it wasn't.by Lisa - Huntington's Disease Support Center
My husband did lots of similar things. Sometimes all I could do was laugh at some of the things. At one point my husband would hide food around the house so he could eat things whenever he wanted. Which made no sense because he would go to the kitchen to get the food anyways. Turned out that the food attracted some visitors of the rodent type (mouse). Every night after he would go to bed I wouldby Lisa - Huntington's Disease Support Center
I brought my husband home for the night. I picked him up at the personal care home at lunch time and nine hours later he is still awake. So I continue to be confused. Just when I question the sleeping he has a day where he is alert. About a year and a half ago my husband would go through a cycle where his movements were so extreme that he couldn't move. It would get progressively worse each day aby Lisa - Huntington's Disease Support Center
My phd, who is my husband, has been living at a personal care home for just over a year has began to sleep excessively. I have been concerned for a little while now. I have wondered if it is medication (now that the disease has progressed i'm wondering if he needs more decrease in meds), boredom, an infection etc. He has never had pneumonia but at a swallowing assessment a few years ago it was shby Lisa - Huntington's Disease Support Center
Dear dmburgess, I too knew about my husbands positive results when I met him. I was 21 when i met him and we were married 3 years later. Even at the time of our marriage there were some symptoms but at that time they were minor. Over the next few years things continued to progress. It seemed way to quick. We didn't get a chance to adjust to one thing before another thing hit us. By the time Iby Lisa - Huntington's Disease Support Center
I met my husband when I was 21. He told me he was gene positive a few weeks into our relationship. He said he wanted to be honest with me and to give me a chance to walk away if I wanted to. My husband doesn't know his cag repeats but did know that it would be early onset. Three years into our relationship we became husband and wife. I began noticing things even before we were married. First it wby Lisa - Huntington's Disease Support Center
I thought it could be the seroquel. There are a few other things that are happening as well that have me wondering if his seroquel needs to be lowered.by Lisa - Huntington's Disease Support Center