My husband has HD as did his father and many of his siblings do as well.
He is 57 and sublte signs had shown up at about age 45. He has actually done quite well in many ways. The last 9-12 months he is more paranoid and is hard if not impossible to reason with on most items. If I disagree with him on something and he gets to thinking about it while I am at work he sometimes has called me to say he is moving out. This is extremely stressful as I don't know what he is actually doing at home and have went to check at times. I just can't seem to talk him out of things or reason with him. It has taken an act of God but I have got him to a psychiatrist twice. Of course, he blames me for all he feels is wrong even if it is not. The first time the psy put him on 1 mg risperal per day. My husband took this for 2 weeks then decided he wouldn't take it any longer. I couldn't talk him into it. The last time we went to the psy (this week) I told the psy a bit more and I think he saw a bit more and he prescribed 2 mg per day for my husband. There have been two times in the last couple months I felt he was having a meltdown and didn't know what to do or exactly how to handle it. I actually called a couple relatives who just happened to drop by. He has been extremely negative on life and myself as well although he has been somewhat like that our entire married life (37 yr) but it has been worse the last year or so. One relative said I should think about putting him in a NH.
Unfortunately we do not have long term care so not only would this be hard financially (although I realize there will possibly come a time to do this) but I also do not want this for him unless it is absolutely necessary. I think of all the good times and he does still have some now and then. I want to make sure I have done all I can for him before I would resort to the NH idea. The only medication he has been on is zoloft. He started on the risperdal a couple days ago. He is taking 1 mg daily and is to go to 2 mg in a week.
I realize HD causes his symptoms and just wondered if anyone has experienced these kinds of things in their loved ones and what they have done to help whether it be medication or something else. Maybe I see through rose colored glasses but I want to exhaust all avenues before I would ever put someone in a NH. As I said he still does well - gets himself ready for the day, packs on his own for our out of town visits, worked daily on a stock market account and seems to do fairly well.
I am wondering if anyone has tried risperdal and if it helps these kinds of things - the doses used, etc. OR is there something else that may help. I hate to have him take 2 mg a day when we haven't tried the 1 mg a day but there must be a reason for the psy to prescribe 2 mg a day?
He stays home most the day with all he does and I feel this also probably contributes to the problem so I am trying to get him out more
which doesn't always work.
I am sorry for this long email. I have sat down several times to write it then deleted it not wanting to burden anyone or sound like a burden but I feel you all are the group that could possibly help and I thank you for your responses in advance.

Something important I forgot to ad to my email is that my husband and I have been together since 19 years of age - I love him, care about him and would miss him terribly if he were not here with me. I know many of you have gone through this and are going through this as well.
Because of this, I feel you know what I am feeling and maybe can give me your ideas and opinions. Thanks again and God Bless all of you.

Shar-
Not a burden to anyone ,I'm sure of that!
Jace was on Zolfot too and now on Paxil and is doing well with it! I think it will probably help with some of the problems you are having. Jace has alot of the same problems. I don't know that much about risperal but I'm sure someone here will! There has to be something to calm him down a bit. I hope it all works out for the better!
Take Care
amber

Shar:

My husband was on Risperdal, 1 Mg morning and evening, for a couple of years. He took it to control his chorea and it worked very well. A side benefit of this drug is that really helps with the anger and other emotional problems that crop up with this disease. Actually using it for chorea is an "off label" use that someone discovered along the way. He now takes Tetrabenazine for his movements but we have to buy it from Canada and it's not covered by his insurance.

He would probably do well on an anti-depressant too. Is there any way you could get him to see a Neurologist with experience treating HD?

I know it's usually hard to get your loved one to the proper doctor, I know it took us a while, but keep trying. Ideally he should have a Primary care doctor, a Neurologist and a Pyschiatrist. Also many people on this board go to a center of excellance for their treatments.

Marg

Shar
My sister-in-law went through a lot of what you are going through now. It got so bad that the only way they could even get him to take his medication sometimes when at his worst, they had to call the police to calm him down and threaten to take him away if he didn't behave.

His Neuro finally had to put him on Halipreradol, Seroquel, Clonazepam; Paxil CR, and Depakote ER. to control the psycotic behavior, the mood swings the violence.
Believe me he kicked her out of the house after 34 yrs, said she was trying to kill him, everything you're going through.
Even when he became completely bedridden he would still fight them. Like you she was guilt ridden at the thought of a NH. so she took care of him herself,Now she has to have surgery where she has lifted and tugged with him there. Her bladder, and a lot of other personal parts are coming out.

She and the dr. and some of us sisters decided to put him in there for her own safety and well being, as well as his.
we cry a lot because he's there, but i've not seen him this happy even at endstage. he was ready to be away from all the distractions and noises of a large family around all the time.
Not to mention they had all the equipment to give him showers, which he'd not had in 3 yrs. he had too have baths given in bed. and we all know how awful we feel after that. They have physical therapy, speach therapy, and a lot of other things to improve their quality of life, when they do finally go to one. we were lucky, we know all the people that work at the one he is in. so that eases our minds some. we know they will call at the first sign that he's worse.

About the Risperdal, when i was having problems before they diagnosed me. they put me on it. Unfortunately for me it put blood in the urine, and stool, believe me they did a pardon the expression " heads to tails " procedures before finally determining what it was. and nobody wants to have upper & lower oscopy's in 8 days apart. so just make sure they check for that and do liver enzymes panel every few months.

sorry it took me a long time to get to your answer for the question.
Like you i get started and don't know when to quit typing.

Best of Luck
Loretta

Has he not been put on disability where they will pay for NH. They do my brothers.

Rispersdal is very good helping control problems like this... especially the paranoia and delusions. My wife Teresa used it for 5 yrs and it was a God send as far as I was concerned. T thought the police were after her and the children would be taken away. She had to be hospitalized because of this. Risperdal brought this under control and she never had that problem again with the police. She has since switched to Zyprexa. After 5 yrs Risprdal stopped being effective. No fault of the medication... things change over time and med switches happen sometimes. 2mg is not a high dose by the way.

As a possible side benefit Risperdal also can help control chorea. Teresa's movements immediately became evident when she stopped Risperdal so she did get that benefit as well. Anyway I was pleased with Risperdal. Sometimes some behaviors are all about the meds. If you want to keep somebody at home you have to be willing to have the medications used. Risperdal is common for use with HD. There is a good chance you will see some improvement.

My wife took up to 5 mg per day. I'm not sure of her dose. It was very effective at first for stopping behavior and some chorea.

We started her on 1 mg an worked upwards over a period of maybe 5 years.

And yes, you need to look at all of your options realistically. All of the practical considerations need to be made.

I don't know where you are, but if you are in the US, you need to look at your state's medicade plans and see if you can qualify. You might be surprised at what you can benifit from. I'm sure by now you have the disablity and the medicare. If you have medicare, you can use it for NH care to start.

It's stressful dealing with the behavioral issues. I see from your post that you have support. It's very important that you support yourself as much as possible during this trying period.

Shar,
I was in the chat room with you yesterday. Glad to get to know you. Glad to see all the good responses to your pasoting today.

Paula