Happy new year to all. i have been reading for last 2 to 3 years sometime several time in a day but never wrote before. we have two son my older son has HD diagnose in 2005 cag54. we both doesnt have hd nor my younger son has hd. he is going tobe 30 this month. we takecare him at home .he is in wheelchair cannot do anything at all. we have to do everything for him. reason iam posting is lately we having problem with obssesivenes. and once it start if we dont do what he ask, he try to hurt him self. we do not have clue how to react when it happened. he is taking lots of med total 10 diff. med some twice some three times. so we need some advice how to calm him down.
Thanks again and hopefully new year will bring some good news for HD family.

Hey there and welcome, and so sorry what you`re going through. How do you know that neither you or your husband or your other son have hd, have you all had the blood test done. Without knowing the different meds your son is on it`s very hard to give suggestions, but you definitely need to be in touch with his doctor for sure about this

Thanks barb i was hoping to hear from you. bye the way i am his father. we have not tested yet but since he is been diagnose iam always with him at doctor home we can see the symptoms. my younger son has been tested and result was negative. we are not worry about us right now because our goal is to take care of him, giving him best care we are from india. move here in 1998 from england my both son born in england. we are working with doctor very closely. taking him in ucla reg. they giving him all the med. for obssesive he is taking clompramine since last 4 weeks. 50mg for last two week. our primary care doc. suggest to give him benadryl. and it did calm him down. nobody have hd in our family and several time we have problem in weekend so its very difficult for us to control him. he is taking risperdal, baclofen , paxil, ativan, abilify, klonopin, tegretol, i want to know do you have any suggestion without giving him more med. how to calm him down. thanks again for taking time and answer.

I don't know if this helps, but when my sister becomes obsessive about something I use distraction. Once, she was determined to buy alcohol and if I didn't let her; she would kill herself. (The problem was that we were at the pharmacy and drawing a crowd of onlookers...) I try to remain calm and talk with her about what she wants. I don't refuse her request, I simply put it off. I like to call it stalling. The key, with my sister anyway, is to be there for her and provide a calm distraction until her mind has overcome or forgot her "request" at the moment. Most of the time it works. Unfortunately, if the means are within access and the intent is present in her mind- it will happen: and has. The best we can do is be present to offer the distraction and do our best to keep the "means" away from her access.

Thanks lisa. it looks good idea to try but he doesnt let it go. yesterday after we give him shower he wanted to go outside so i was walking him in a wheelchair and suddenly he said i want to go in a swimming pool. i am a manager at motel so we have a pool and we were walking in a parking lot i explained him its very cold plus he is very heavy almost 200 lb we cannot put him in water and back in wheel chair. he move too much in a bathroom when it even slightly wet, we try every thing . he doesnt want to watch tv keep asking to take in a pool. he try to sit him self in a wheel chair and fall on the floor. banging his head and hand for almost three hour we gave him benadryl after couple of hour he calmdown and slept for two hour. he has answer for everything. when he was able to swim go out we always ask him to take but he never wants to go now we need two person all the time and he is wants to do the thing he cannot do . but next time we can try to stay calm. and try to distract.
thanks again

It sounds like an extremely difficult situation with your son. I did not experience that type of situation with my brother. I have dealt with family members with challenging behaviors, I have some ideas that might help both you and your son to calm yourselves. Breathing slowly and depply when a person is upset is often very relaxing. There may be certain music that is calming. You may find that he becomes calmer if you rub his back or tap him gently on the crown of the head or rub his feet. Try only one idea at a time and see if it works. Or get him a cool drink or get him a warm drink. It will probably be a lot of trial and error to come up with what works. It is important to make sure that all of you, you, your other son, and your wife eat regularly, have a good nights sleep (when possible), have enough fluids, and have enough interesting activities. Whehn anyone is hungry, thirsty, tired, bored, too hot or too cold, they are more irritable. You and the rest of your family could take turns taking care of yourselves so it is less stressful taking care of your son with HD.

Preservation is so part of the disease. Remember it is not him acting but the disease in him acting. If you think of it that way it might help. Try never say no outright. Try something else for a while like, "Hey lets go get some ice cream for now and we can think about that later. " My favorite phrases are "It might be possible later or it could be, or maybe, maybe not." When saying no outright, to him you are disreguarding his feelings about something. He might be illogical but he does have the 'feeling at that moment.' Give it some time to pass.

Can i ask why you don't want an increase in his meds? Because i think a med increase or med change, is the only thing that will help, and he would also feel much better too if he was feeling calm and not agitated

Thank everybody for response. we will try some the idea you gave us. doc says clomipramine takes time so dont want to increase . we have appointment with psychiatrist tomorrow. last couple of days he is very calm. may be benadryl help him to calm down. thanks again.

In the early to middle stages of HD with Ray, he would become obsessive and 'difficult' about things, as well. It came to the point where we'd have to try to be careful where we'd take him or what we'd talk about with him. For example, I normally always took Ray to our son's sporting events and if I couldn't for some reason and he knew about it, he'd get extremely anxious, obsessive and angry . . . so if I knew that, for whatever reason, I couldn't bring Ray, I would just not discuss it with him . . . I never wanted to lie to him, but sometimes for all of our sanity, I just didn't bring certain things up. Another example, if I was taking him to the doctor and drove by a certain restaurant and he saw it, I knew he want to go there and get upset if I couldn't take him. . . so I would take an alternate route and not go past that restaurant, avoiding having to tell him no. I also found that routine helped A LOT!! If he knew and was confident in what his daily routine was, he was a lot calmer, but if something was different, he'd get very upset. Maybe if your son likes swimming, you can set up a certain day/time where he can do that, so when he wants to do it and gets upset, you can say 'remember, we're doing that on Wednesday" or whatever day. I did this with Ray all the time, and he would become calmer . . . although, then he'd ask me a million times, 'how many days,' which was fine, because then I'd just tell him, three days, then two days, then 'oh, boy, one more day' and he'd get excited. It worked for us most of the time, but of course there were still times it was very difficult.

In the later stages of the disease, I noticed that whenever Ray had some kind of infection (he got a lot of skin infections), he'd get more anxious and obsessive, so always knew when something was coming, because he'd get more anxious/obsessive. Also, when he was constipated, he'd become more difficult, because I think he was uncomfortable.

I hope some of these suggestions help! Good luck and I'm so sorry you're going through this! It's not easy, but it's good that you're all so supportive and trying to come up with ways of helping him.

My Mom was on benadryl for a while a long time ago . She had hives that no one was able to understand why she had hives . Anyways , I know at the time I hated that she was on benadryl , because people with HD , it is not the best for them . Or at least I think I read that . Maybe someone else has heard or read that ? Also so sorry about your dear son . My best. db