WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Wall-to-Wall jenny at 8:54 pm, August 3 says

Hi Michael, how's things going with Chuck? Is he still in Rush Hospital? Hope you are enjoying down time. How's roller derby? We haven't had that in Australia for decades!

Wall-to-Wall Mary Martin at 10:46 pm, July 22 says

Hi Michael, nice pics. You're also involved w/roller derby team. Cool!

Wall-to-Wall Mary Martin at 4:21 am, July 13 says

Michael, the drugs my father was on were valium, haldol, librium. He was aways agitated, even on them. He was very paranoid. the side effects were unsurmountable for him and all of his caregivers. He spent the last 3 yrs of his life in an assylym because of these drugs. My brothers and myself all take Clonazapam. It doesnt give us that doped up feeling. It doesnt make us agitated. In fact it does quite the opposite. It clears up alot of the chorea. It enables us to continue to socialize. It stops us from sounding like we have speach impediment. I refer to this as our magic pill. We have only one medication we are taking, therefore, LESS SIDE EFFECTS OF DRUG INTERACTIONS:, ie, paranoia, delusional states, agitation, dopey feeling.

Wall-to-Wall Mary Martin at 4:13 am, July 13 says

Hello Michael, This is Mary Martin. I am a patient. I have a rather large family and some vast experience with HD because of it. I know one thing for sure. I am not a doctor. I cannot give you medical advice. I can only tell you that out of 4 sick siblings, 3 of us are taking the same thing for agitation. Can someone out there tell me if I am out of line in telling Michael what medication works for us? When my father was ill I was very young. There were very few meds for HD pats. Now there are many. I do know however, 3 of our fam. members take the same pill every day. We all get a different dose, but it does help w/agitation, chorea, anxiety, and many of the other symptoms we have. Actually, the oldest one who is still alive was the first to take it and he still lives alone and he still golfs, walks, and takes care of himself at 51. He is a miracle and an clear cut example of what living a clean life and taking LESS meds leads to a longer life. I also know that each family is different in their physiological make up therefore different meds work for different physiologies. Does Mr. Rockwell have a neurologist or some kind of specialist prescribing for him?

Wall-to-Wall jenny at 8:52 pm, July 11 says

G'day Michael, hope you're enjoying the site. We all love it on here. It's like a big global family. You can ask questions, rant and rave, share the good times and bad. Glad you joined us. You're doing a wonderful thing. I hope you have help. Is respite available to you? That's a big sacrifice for a family friend. You're an inspiration! All the best from Down Under, Jenny

Wall-to-Wall Jennifer Tonelli at 11:25 pm, July 9 says

Love the picture! Back in the 80s it would have been hanging on my wall!

Wall-to-Wall jenny at 9:31 pm, July 9 says

Wow Michael , you sound like you have your work cut out for you. If you are not a smoker, then you may as well be. There are many medications that I'm sure will help. Others on here will be happy to tell you their experiences with them. I am not there yet, but will be in the near future, so I will be interested to hear as well. All the best in your difficult assignment, Jenny