Debra, that's a wonderful success story. Sounds like your husband is farther progressed in HD than mine. My husband is thin but has maintained his weight well for a year and he eats heartily. I'm just concerned about the occassional choking when no one is there to help him. He has already signed (2x) stating no feeding tubes but, fortunately no need for one at this time. I've asked him to taby LizzieAnn - Huntington's Disease Support Center
Debra, I'm glad to hear how the Abilify has helped. My phd is on mematine and risperdal and we have recently been considering an anti-depressant (previously was not a problem). Not sure what anti-depressant would be good to start with (everone with HD seems to be on so many different anti-depressants and really didn't want to start the "drug juggling" problems). I was concerned aboutby LizzieAnn - Huntington's Disease Support Center
interesting discussion! I know I have read before that many phd's have a more active immune system than the norm. Even before I knew my phd was HD positive we always said he just never gets sick. If he ever did get a bug it only lasted about 1 day and his reaction was mild. I believe I read that many phd's have a strong immune system but maybe that decreases as the HD progresses? I'm sureby LizzieAnn - Huntington's Disease Support Center
Part "A" is for generally hosptial/LTC coverage and Part "B" is doctor coverage. Part "D" is for Drug coverage. Yes, Medicare A & B pays 80 % and you are responsible for the other 20% but depending on how much income you have there are programs at your local Medicaid office that can pay your Part "B" medicare premium for you and possible programs thatby LizzieAnn - Huntington's Disease Support Center
I am so,so sorry you have lost your husband. Blessing to you and your family.by LizzieAnn - Huntington's Disease Support Center
Barb, Actually my hubby is on Memantine. He has been taking it for 1 year. 20 mg/day (10 mg-morn & 10 mg-night). Unfortunately, for us we haven't seen any improvement on the Memantine. Our doctor states no harm in remaining on it as it's """"Possible"""" the medication might retard progression. We're still weighing this decision weather to continueby LizzieAnn - Huntington's Disease Support Center
My hubby wouldn't give up his death grip on his blanket if you paid him to(we each use our own blanket), but he moves so much during the night that he has to put his fitted sheet back on every morning as it has popped loose on his side of the bed.by LizzieAnn - Huntington's Disease Support Center
Thanks, Mrspatwolf That's pretty much what I figured, but thought maybe someone saw a decrease in this behavior when taking meds of some sort. I'm just thankful he's not beating his chest!by LizzieAnn - Huntington's Disease Support Center
I would like to hear from anyone that has found a medicine that might help with this. My hubby just started this new symptom of contant throat clearing and slight vocal sounds. This is a new symptom for him and he does have moderate Chorea that he's been taking Risperdal for. We are due a Dr. visit soon for his 6 month review and I would like to have some info to bring with me to the appointmeby LizzieAnn - Huntington's Disease Support Center
I'm sorry for you and your family's pain. Blessings, LizzieAnnby LizzieAnn - Huntington's Disease Support Center
kag2000, I haven't posted in a while as things have been very hectic with work lately and working lots of o.t. But, I have stopped in to read post when I get a chance and I just wanted to comment that from the outsider looking in on your post: IT APPEARS THAT YOU ARE SUFFERING FROM DEPRESSION!! You keep saying that your're feeling sad, guilty, nothing to look forward to but sufferby LizzieAnn - Huntington's Disease Support Center
I must say that jerking and excess movements and hollering in his sleep was one of my phd's 1st really noticable symtoms. Below is an interesting article.by LizzieAnn - Huntington's Disease Support Center
I do agree with Fred on the fact that wheather you have LTC insurance , Medicaid or can private pay....it's not really going to matter if there isn't a decent facility that will take you.by LizzieAnn - Huntington's Disease Support Center
For medicaid, one's assets have to be no more than $2000 (for the person receiving medicaid). That does NOT apply to a spouse of someone on Medicaid in a Nursing Home. It can vary slightly from state to state but a spouse can have much, much, much more in liquid assets (depending on the total resources of the household- and if a couple did a resource assessment when the person applied with mby LizzieAnn - Huntington's Disease Support Center
Those near her would be best to decide. Have you been in the car with her when she drives and observe how her driving is? My phd hubby was driving & working last October and then it was one incident at work where he couldn't remember what to do and he got scared and that was a real turning point for us. Up until that point he was still driving (mainly because he had to get back & forby LizzieAnn - Huntington's Disease Support Center
Welcome, Lisaanne. I thought I was seeing my "double" LizzieAnnby LizzieAnn - Huntington's Disease Support Center
That's wonderful!! Such a joy to know a child is negative!by LizzieAnn - Huntington's Disease Support Center
Thank you both for your responses. It's just one of those little things that we notice is "new" in this process. I thought it was just a little different than the normal chorea movements. Eric, thanks. I'll look forward to hearing if you find out any more.by LizzieAnn - Huntington's Disease Support Center
Medicare only pays up to the 1st 100 days (and that's only as long as the person was admitted to the LTC facility directly from a hospital) Medicare will pay up to 100 days as long as the person is doing what they say and making progress. If they stop cooperating at the facility or do not make progress to be "rehabilitated" then medicare stops paying. After 100 days you are talkingby LizzieAnn - Huntington's Disease Support Center
My phd hubby has moderate Chorea. Within the past few months his right hand has started to "flex" up at the wrist and turned to a slow writhing flex & he is not able to use the hand as much. This is new & we are just wondering if this has a name, is this what dystonia is?by LizzieAnn - Huntington's Disease Support Center
I would say that you seem to be coming from an area of correct information on your statements....and as far as the other family members you speak of appear to have been given, if not incorrect information, atleast not quite all accurate info. My phd hubby is midstage with excessive chorea and memory/exectuve functioning impairment and his brain scan did not show anything visable 2 years ago.by LizzieAnn - Huntington's Disease Support Center
oh, Barb. I'm so glad to hear you found a way to get there! You are a smart little cookie, you knew how to "encourage" Dan to accompany you to the event! I'm looking forward to hearing how it all went. Have Dan takes some breaks along the drive, ice cream stops might make his outlook more sunny!by LizzieAnn - Huntington's Disease Support Center
Way to go, Matt. That's a really good time you ran that in!by LizzieAnn - Huntington's Disease Support Center
Thank you for the link, Will. Does anyone know how long the Creatine study will last and when we might hear any results on it?by LizzieAnn - Huntington's Disease Support Center
I don't know that answer and am waiting on a response from someone with knowledge in detail on this with you. The following is also what I have read: "Creatine is a non-protein amino acid manufactured by the body in the liver, kidneys and pancreas using the amino acids arginine, glycine and methionine. Creatine is then carried to the heart, brain and skeletal muscle, where it assists iby LizzieAnn - Huntington's Disease Support Center
I'm sorry you lost your brother.by LizzieAnn - Huntington's Disease Support Center
I'm sorry for your loss. May you feel peace. Lizzieby LizzieAnn - Huntington's Disease Support Center
Barb, Your generosity and talent are such a joy! I was really touched by your webpage and particularly enjoyed your story of Henry's quilt and how "excited" you were to receive his gift.by LizzieAnn - Huntington's Disease Support Center