Caring for someone with Hd is a big undertaking and you should be proud for doing what you can for your dad. Is it possible to have someone come into the home to give you a break or to find a facility where he can get the help that's needed? It's important for you to enjoy being young and do what makes you happy. You can still be there for your dad without being his full time caretaker. I too hopby JudyF - Huntington's Disease Support Center
what you have done is a great thing. No one should ever judge your decision if you decide to leave. Those of us who have been in your shoes completely understand. My kids dad has been in a nursing home for 6 years now. It came to a point where he either had to leave the home or the kids and I did. HD is a long tough journey. I did the best I could for as long as I could. I was working full time ,by JudyF - Huntington's Disease Support Center
We found a great doctor in Rochester Ny. His name is Dr. Kevin Biglan. Strong hospital has an HD clinic. Everyone there is wonderful. Highly reccommend them.by JudyF - Huntington's Disease Support Center
Thank you Howard and Vicky! I am just at a cross roads! At this point it doesn't make a lot sense to go with a feeding tube. He has progressed so far. He is falling all the time , his speech is getting much worse. Some days I cannot understand anything he says! He still has a lot of anger towards me. I'm unable to visit alone. At this point he has no quality of life. For months now has been sby JudyF - Huntington's Disease Support Center
My husband is having major issues with swallowing. He now has supervision while eating and all of his drinks are thickened. My question is , does anyone know how long before he will be unable to swallow at all? Weeks, months or years? I can't find any information about how long the last stage of the disease may last. I know that its really all a guess, but some sort of time table would be helpfulby JudyF - Huntington's Disease Support Center
I have been trying to respond to a pm, but it keeps getting rejected. Marsha or Steve, do you have any idea why? I've been using my phone.by JudyF - Huntington's Disease Support Center
I just tried sending u a pm, but it was rejected. Not sure why, but I will keep trying.by JudyF - Huntington's Disease Support Center
I would also be happy to share my experiences. Feel free to pm me .by JudyF - Huntington's Disease Support Center
Thanks Shar! He has actually been on several different meds. He is on haldol and an antidepressant. He took risperidol for a long time and he ended up having a really bad reaction to it. He has been on so many meds that the doctors really don't know what to try anymore.by JudyF - Huntington's Disease Support Center
Hi everyone! I haven't posted in awhile. Things have gotten pretty bad. Most of you know that my kids dad is in a nursing home. He has become so violent and difficult. He refuses to shower, he will not change his clothes. He has become so angry towards me that I cannot visit or take my little one to see his dad. He yells and swears at the staff. He has even begun biting the staff. He sees a neurby JudyF - Huntington's Disease Support Center
My husband also went through a similar experience. His problem ended up being a side effect from risperidone! He couldn't move or speak. We also thought that he had a stroke. Once it was out of his system he did improve.by JudyF - Huntington's Disease Support Center
My husband had and still has the same issues. He has been on a huge list of meds and nothing has really worked for him. He did start out on risperidone, but after a couple of years had a reaction that put him in The hospital. He is now in a nursing home and they are having a hard time getting him under control. Good luck! Fortunately everyone is different and I'm sure that the doctor will be abby JudyF - Huntington's Disease Support Center
Indigo- I recently had a meeting with the nursing home staff and his eating was the main topic. They are clueless! I have asked that they talk to his doctor about either an increase in his current meds or add/change them. He has been very depressed. He was threatening to kill himself. They ended up putting an ankle bracelet on him so that he wouldn't try to leave. He was supposed to see his neuby JudyF - Huntington's Disease Support Center
Patty- he tells me that he won't eat if I'm not there, but will still refuse even when I am. He does have a lot of problems with swallowing now, but if I were to bring in something he would eat without hesitation. He has become very picky. Things that he used to love he will no longer eat. He tells me everyday how much he hates it there. I think he is hoping that I will bring him home if he refuby JudyF - Huntington's Disease Support Center
People that hadn't seen my husband often were always shocked at his progression. They noticed it more than I did. I'm not sure if it was because I just got used to his symptoms so I didn't notice how quickly he was advancing in the beginning. Now that he is out of the house I am much more aware.by JudyF - Huntington's Disease Support Center
As many of you know my husband has been in a nursing home for over 2 years now. He is losing a ton of weight due to his increased chorea and the fact that he is refusing most of his meals. He has always been very manipulative and that hasn't changed. He will call me several times a day to say that if I don't visit, he will not eat. The thing is, I see him almost everyday. He still refuses toby JudyF - Huntington's Disease Support Center
What fantastic news! I am so happy for you.by JudyF - Huntington's Disease Support Center
My husband experienced hallucinations, but it seemed to be related to medication. He had to be hospitalized and was taken off all medication. Once they did that the hallucinations went away. They were very scary! He thought that someone was in the house and went into our oldest sons room with a big knife to get the person he thought was in there. Thank goodness our son was at college. I wouldby JudyF - Huntington's Disease Support Center
I am so sorry danne! Your story brings back lots of memories. My husband chased me around the house, he wanted the key to his gun cabinet. I think that if he had been successful I may not be here today. Another time he was in our son's room with a knife. Thank God he was away at college. At the time the biggest mistake I made was not calling the police. There was No documentation as to his beby JudyF - Huntington's Disease Support Center
This is fantastic news! I am sooo Happy for you.by JudyF - Huntington's Disease Support Center
I also agree with everyone. I had to give my husband an ultimatum when he was still living at home. He either had to take his meds or the kids and I would have to leave. I won!by JudyF - Huntington's Disease Support Center
I totally agree with Indigo. My kids and I also went through some of the same things. I also had no choice but to have my husband placed in a nursing home. It has been the right choice for everyone. My husband was also on seroquel and taken off and put on haldol. Seems to be working much better. Please don't wait for something bad to Happen. At the first sign of violence call 911 and explain thby JudyF - Huntington's Disease Support Center
That is fantastic news Carla!!!! I am so happy for your family.by JudyF - Huntington's Disease Support Center
Thanks Marsha, What you said makes a lot of sense. It gives me a better understanding. I'm glad that he is not aware of the movements because I don't think he would allow visitors if he was. They are significant. He goes to the neurologist on friday so I hope that he can help with that. He has a tremendous amount of pain from his head injury and I know the movements are making it worse.by JudyF - Huntington's Disease Support Center
I have read that people with HD are always aware of what's going on, even in later stages. So my question is do they still understand everything? For instance, it seems that I can repeat the same thing to my husband several times in a short period of time and yet acts as though he doesn't understand what I am saying. I'm trying to determine if he really doesn't understand vs. thinking that if heby JudyF - Huntington's Disease Support Center
Perhaps you could print out some information about HD so that the police would have a better idea of what they are dealing with. Do you have something that you could carry with you that says you have Huntington's? Good luck!by JudyF - Huntington's Disease Support Center
Hope you have a great time, sounds like fun!by JudyF - Huntington's Disease Support Center
Katie, Why are you against having an HD free child? Nobody ever said that you have to give up your dream of having a family.by JudyF - Huntington's Disease Support Center
Welcome back! That's awesome that your son participates in clinical trials. Here's hoping for positive results!by JudyF - Huntington's Disease Support Center
I am so sorry that you had to go through that. How devastating! Would you be able to have invitro, so that any HD positive embryo's could be avoided? My heart goes out to you!by JudyF - Huntington's Disease Support Center