Oh gosh, I'm sorry your post wasn't noticed, or maybe nobody had any helpful advice. I have just thought, the med she is on can cause depression, and if she is depressed, that could cause her to not want to eat. Just an ideaby Barb - Huntington's Disease Support Center
No, I deleted my post because I decided I didn't like what I had written, so that is just fine. If I delete something, it means I decided that what I wrote was in poor taste, so just accept a delete as a gift. All is good, I just decided a delete was a better gift to giveby Barb - Huntington's Disease Support Center
OMG, as long as I've been on this forum, I think this is one of the biggest moments of shock I have ever had. That is beyond reprehensible, wowby Barb - Huntington's Disease Support Center
Mike, I'm sorry to hear you have to take such a long trip to mayo, but, having said that, it sounds like that is an awesome clinic too, and it sounds like you are having a very good experience there. Glad to hear thatby Barb - Huntington's Disease Support Center
Kristine, I wrote you and others about what my hd clinic is like, but I don't think you saw it, because there were several new posts, and mine was about the third one up lol. I used to do that, if there was a new post, I would just look at the new one, not realizing there could be other new ones above that one, and didn't discover this until one time people were talking about something that I hadby Barb - Huntington's Disease Support Center
Oh gosh, some of these clinics just seem so mixed up, compared to my experience. I go to the hd clinic here in Vancouver. Michael Hayden actually runs this clinic, although he doesn't see patients for their neuro exams, he sees patients more on the research end, like those in clinical trials and stuff, but he is head of all the staff too. When I go into the clinic for my yearly, there is a socialby Barb - Huntington's Disease Support Center
My dad and I both have a cag of 39. When I received my results, I was told 39 is not grey, but definitely positive. I was diagnosed as symptomatic at the age of 46, 10 years ago, and my dad did not become symptomatic until the age of 75, and passed away a year ago, and he was 82 years old, so hd is also very unpredictable, even in the same family, with same cag countsby Barb - Huntington's Disease Support Center
I don't understand. What would herpes have to do with hd?by Barb - Huntington's Disease Support Center
Chris, I've been in the very early stages of hd for a few years now. But two years ago I got a very bad concussion, and since then had 2 more concussions, and been dealing with very severe post concussion vertigo, and just when I start to get better, it will get worse again, for me it gets worse if I'm in a moving vehicle, and the brakes get slammed on, then I'm back to square one with my recoverby Barb - Huntington's Disease Support Center
Hey Sunny, no bad here. The only way I know things is by what I've heard here, and now you know something someone else may not know Next time it will be you telling someone something they didn't knowby Barb - Huntington's Disease Support Center
Actually, there is a possible "cure" going into clinical trials this spring using gene silencing. Testing was one of the best things I ever did, because you can't fight what you don't know you have. And there are so many positive things that help hd, exercise, supplements, etc. And there is one medication that actually slows the progression of the disease, called memantine. I went on thby Barb - Huntington's Disease Support Center
sunnyjem, yes, if someone is positive for hd but doesn't have symptoms yet, a head trauma can definitely bring hd on quicker, both me and mikee are dealing with head trauma.by Barb - Huntington's Disease Support Center
I don't get it, you didn't know hd involves confusion? that's a ton of what hd is about, but I can understand you would find it shockingby Barb - Huntington's Disease Support Center
Please take care Marshaby Barb - Huntington's Disease Support Center
Mine is immediate release. My hd psychiatrist, when this happened, actually had me try the extended release, because it would be covered, but I had a bad reaction to it, I can't remember if it was an emotional reaction, or asthma, so the simplest solution was to just find out where the name brand Seroquel plant was in my area, and order their generic brand. I think your pharmacist should be happyby Barb - Huntington's Disease Support Center
Yes, there is a huge difference Pete. I had been taking brand name Seroquel for about 3 years, at bedtime, for sleep issues, but also as an anti depressant. Suddenly something was wrong with me. I was having trouble sleeping, and having depression and panic attacks in the daytime. This went on for several weeks before we discovered the culprit. The pharmacy had switched me to a generic form, hadnby Barb - Huntington's Disease Support Center
You get to wear shoes for the heal to toe walk???? lol They make me do it barefoot, and I hate walking in barefeetby Barb - Huntington's Disease Support Center
I'm sorry what you're going through, but I'm not sure why they would recommend hospice. Hospice is usually for end of life pain management, to help the person pass as quickly and painlessly as possible, sometimes withdrawal of food, or any medications that extend or add quality to life. Sometimes with hd there can be a sudden decline, that gets worse, or sometimes it can level out and improve agaby Barb - Huntington's Disease Support Center
Mike, the reason I asked the above questions is this. For me, my hd caused huge sleep issues, and they didn't get resolved until I started Seroquel, and the difference was night and day. That is why I asked about depression and anti depressants, because if u do have trouble with depression also, then Seroquel resolves both depression and sleep issues. But if you don't have depression, then that'sby Barb - Huntington's Disease Support Center
Hey Mike, I'm sorry you're having trouble with sleep, believe me, I know, that was a huge issue for me for awhile. I did a quick search on ambien, and it says it can cause depression and agitation. So I'm just wondering if you have trouble with depression, like many of us with hd, and if so, are you on something for the depression, and if you are, is that working for you depression wise. If depreby Barb - Huntington's Disease Support Center
Concerned Partner, and Daisy too. Please don't worry that you'll hurt my feelings, I'm sorry that worried you, and what you said you said so kindly, so no worries, I'm good, and I didn't want to shut the conversation down with my opinion. You also know that every thing you said, about a spouse in denial, everything to do with that, even lack of family history, even the spouses family turning agaiby Barb - Huntington's Disease Support Center
Sorry, can you re-word your question? I don't quite get what you're askingby Barb - Huntington's Disease Support Center
Grizmo, your post has a lot of good advice and truth in it. I think you're very wise for your age. I think maybe you just didn't realize in your post that his ex does not have hd, in any way shape or form, that he is the one tormenting someone, and trying to pin a disease on her that even her doctors are not trying to do, and she has no family history of hd, only an abusive husband. But, you areby Barb - Huntington's Disease Support Center
Hi Grizmo, welcome to the forum. First, I want to say how sorry I am for all you've gone through, and very proud of what you are doing with your life. You know, try not to also feel guilty, if your mom was well, she wouldn't want you to feel that way. Welcomeby Barb - Huntington's Disease Support Center
Well, what I have to say is this. First, this was just my opinion, and a very strong one at that. I had said that he doesn't seem to use this place for support, but only for info, and verification of his allegations. Sooo, I'm sorry everyone, because we are so trusting and giving, but truly, if this really was his place of support, not his place of dirt digging, he would not have just flipped usby Barb - Huntington's Disease Support Center