Do any of you know of any nursing homes anywhere that are geared toward Huntington's patients? If so could you please give me their name, location and telephone number if you have it? thank you so much Sharby Shar - Huntington's Disease Support Center
There was a post years ago that told of a medication that should not be used for HD patients. It was something that may be used at the dentist office to numb or in surgery. I can't remember the name of this. Does anyone remember? Thank youby Shar - Huntington's Disease Support Center
All I know is my husband has been on clonazepam for several years. His dose is .5 twice a day. This does not seem to have the great effect you are finding. I wonder if they could lower the dose to see if that would help. Just an idea.by Shar - Huntington's Disease Support Center
The prolixin is similar to Haldol from what I hear - nuplazid is a new drug as of July 2016 which has had tremendous results in parkingson patients especially with behavorial problems - the clozapine is a drug which has had good results from what I hear for behavorial issues with HD patients, however, it requires blood testing weekly and from the side effects I have read I feel it can potentiallby Shar - Huntington's Disease Support Center
Has anyone ever been prescribed any of the following medications for psychotic dementia with HD? If so what were your results please: prolixin nuplazid clozapine Thanksby Shar - Huntington's Disease Support Center
Matt- It would probably help to see a counselor who is familiar with this disease. It will take some time to cope with your results. There are so many trials going on and that are forthcoming that look to produce a cure or reverse symptoms. Take one day at a time. Each person has to make their own decision on whether to test or not and I'm sorry you were pushed to do so. Some do and some dby Shar - Huntington's Disease Support Center
Yes I have noticed Marsha hasn't been around. I hope all is well with all of them and that she is just busy.by Shar - Huntington's Disease Support Center
I printed out the schedule of ratings for the VA dated 2/5/14. If you go to 4.124a-10 Schedule of Ratings - neurological conditions and convulsive disorders then go to number 8106 Chorea, Huntington's it says to rate as Sydenham's chorea. Then says "this, though a familial disease, has its onset in late adult life, and is considered a ratable disability." Ratings are 10% - 100% deby Shar - Huntington's Disease Support Center
Take care of yourself Marsha. We want you to get better soon! Sharonby Shar - Huntington's Disease Support Center
I am not familiar with the exact trial results but my husband has been taking 10 gr of pharmacy grade creatine for 10 years or better and I know that is one reason he has done so much better than the remainder of his siblings that are/were affected by HD.by Shar - Huntington's Disease Support Center
When our daughter was pregnant she wanted this checked out. We were told that since this is relatively new they do not know how long this will last in storage - it depends on how quickly it gets to the storage unit as to whether it will be good or not - there was also some concern about whether you would get your own back or not. I worked at a facility co-located where there were times medicaby Shar - Huntington's Disease Support Center
Runningforlife - What an awesome attitude to have - we should all have that attitude whether or not we are at risk for HD or anything else!by Shar - Huntington's Disease Support Center
I am sure you know but before getting HD on your record make sure you have all the insurances you will need.by Shar - Huntington's Disease Support Center
Barb - chime in any time - good to hear from you again on the board and Marsha - you are more than welcome and very deserving!by Shar - Huntington's Disease Support Center
Marsha- We, who have been on here a long time, and also who have researched new items coming out know you are not lying - never have, never will. We are very thankful for what you do for all of us. We also know you are a very intelligent woman and extremely knowledgeable on HD and all you speak about. We also know if you do not know an answer you do research until you have accurate findingsby Shar - Huntington's Disease Support Center
I am with Marsha - if you want to have the baby have the baby - if you abort now with those thoughts you will forever regret your action. Taking it further - if your husband would have been aborted you wouldn't have him in your life. The baby is moving - this is an actual little human being you are carrying. I also agree treatments are coming just not as soon as we want them. My husband hasby Shar - Huntington's Disease Support Center
One thing I would tell him which is true is that there are medications that will help - not only help but may slow up the progress of the illness.by Shar - Huntington's Disease Support Center
Omaha hopes to have a COE in the future. They working on it at UNMC. There is a very good COE at the University of Iowa in Iowa City, Iowa. Dr. Pedro Gonzales is excellent and he is the neurologist there, however, he is leaving to take a position in Pennsylvania. He said they are looking at someone to replace him who would be very good with HD.by Shar - Huntington's Disease Support Center
I agree with Patty - she gave you very good advice. I am in the same shoes she is so to speak. My husband of 45 years has HD. Neither of us knew of HD when we married. I would still do the same thing and marry him again even if I knew. We have had a good life and been blessed by much. We choose to live life with adjustments as necessary but not dwell on HD. He is on some medications thatby Shar - Huntington's Disease Support Center
Robi- We could never repay all of you for what you are doing but you all are appreciated more than you will ever know. If any of us could ever do anything for any of you please let us know. We are forever greatful for Andrew Schectel and hope he knows how thankful we are for what he has done and is doing. There are so many very wonderful and good people affected by this illness and the day aby Shar - Huntington's Disease Support Center
Barb- I, like many, feel you gave excellent advice and put a spin on it that I had never thought of. Thanks.by Shar - Huntington's Disease Support Center
He is on .5 mg twice daily, however, he didn't start at this dosage. He has been on it so many years I don't remember for sure what he started with - I am thinking it was half of that twice daily or just .5 daily.by Shar - Huntington's Disease Support Center
My husband seems to have luck with it.by Shar - Huntington's Disease Support Center
Good one Barb - lol - evidently beer has been good all these years!! in more ways than one!by Shar - Huntington's Disease Support Center
An article our daughter called us about today. It is in the USA Today this weekend. Another step closer: ]by Shar - Huntington's Disease Support Center
First of all, everything is new so give it time to resonate. Also, the low cag count is much better than most so that can be looked at as a positive. There are many things you can do and supplements you can take to be as healthy as possible. If you read the prior posts and news on HD there are many trials in progress which look very promising so that is a positive. I wouldn't say anythingby Shar - Huntington's Disease Support Center