Anyone wanting to read on the Amarin website, which is the company who makes miraxion, can do so by going to www.amarincorp.com.by Shar - Huntington's Disease Support Center
I failed to mention on my previous post that we finished the 12 month trial this last March 2007 and I had written the CEO of Amarin about a month later.by Shar - Huntington's Disease Support Center
I wonder about Amarin as well. My husband was involved in the trial for miraxion - he was on the trial for 12 months. The first 6 months no one in the trial knew whether they were on the "real drug" or on the placebo. The last 6 months, however, everyone was on the real drug. After the year the results from the 7 on trial in Colorado where we drove 7 hours each 3 months were: 3 werby Shar - Huntington's Disease Support Center
I read Deb's story and what a roller coaster ride indeed. I am glad the results were good. I feel for you as you have a very difficult decision to make and live with. Give yourself plenty of time to explore all options to make sure you do what you feel best about and can live with. I have struggled with adding this to the post but please consider the other side. You are now carrying a littleby Shar - Huntington's Disease Support Center
Debbie- I am glad he is well enough that he is bored. We are all so very relieved that he is better. Take careby Shar - Huntington's Disease Support Center
For those of you taking the 10 grams of creatine a day - how do you take it? Do you take it in small doses, exercise while taking it, take it scattered throughout the day, take it with food, take it with juice or water, etc. Also, do you drink one glass of liquid per 5 gr dose, etc. I ordered and just received the neotine brand of creatine and my husband was asking how everyone is taking itby Shar - Huntington's Disease Support Center
Debbie- My thoughts and prayers are with you and your family. Know that many many people are praying and care.by Shar - Huntington's Disease Support Center
Hi Lauri- My husband is starting to have some trouble swallowing. My mother in law used to used a blender for some of my father in laws foods to help. Also, as you said smaller bites and more concentration seem to help. I know others will probably have more ideas for you. Take care Lauriby Shar - Huntington's Disease Support Center
Sylvia- I am very sorry for your results, however, as someone prior had said there are so many medications that can help with HD now and more will be coming. And remember, you are first and foremost a wonderful person.by Shar - Huntington's Disease Support Center
What a celebration you will have to have. Someday I hope all people at risk for HD will get the same feeling when a cure is found hopefully soon. I wish you a wonderful life and we hope to see you much on the forum.by Shar - Huntington's Disease Support Center
My husband was put on risperdal earlier this year. He was taking 2 mg twice a day. They helped his aggression and a couple other issues that needed to be helped, however, they caused him side effects. They did not seem to help movement. The side effects were barely talking at all, just sitting around and staring more, basically not himself but more like a robot. Another side effect was sexuaby Shar - Huntington's Disease Support Center
Good luck Mary- You will be in my thoughts and prayers. I hope you are negative but even should you test positive you are first and foremost a person, who may be at risk for HD. Also, with so much research and so many trials going on I feel big strides are being made to help with HD until that cure is found, which is just around the corner. God Bless You Sharonby Shar - Huntington's Disease Support Center
It is so refreshing to see things from a child's perspective. They are so brutally honest! Can't imagine being a teacher those first few years-I am sure they all could write a book!by Shar - Huntington's Disease Support Center
Congratulations to you and your husband Debbie. Give him an extra hug from all of us and you too. Behind every good man is a good woman!! How proud you must be.by Shar - Huntington's Disease Support Center
After a period of time on disability (I think 1 year) my husband was told by his former employer with whom he had health insurance as a retiree that he HAD to apply for Medicare when it was offered, which he did. There is a monthly charge for the medicare and his former employer reimburses him $43.10 a month toward this, although this amount does not cover the total Medicare monthly charge.by Shar - Huntington's Disease Support Center
When my husband applied he was approved on the first try. I did the paperwork and contacted the HD center we used for information. The gentleman at the HD center had worked with people applying for SS before and told me how to word certain answers which evidently helped a great deal.by Shar - Huntington's Disease Support Center
I have always wondered about this. In my husband's family more are affected by HD than not. For instance, of his aunts and uncles 3 out of 4 had HD. His first cousins, 4 out of 5 have gotten HD. In his own family so far 4 out of 6 have HD - the other two are younger and hopefully will not get it. In going to a HD clininc we met a family in which 1 out of 9 children had HD, the others didby Shar - Huntington's Disease Support Center
I agree with both of you!by Shar - Huntington's Disease Support Center
Margaret - what a beautiful love story and a love that many will never know. It could have gone the other way as well - you may have been the one sick and I am sure Tony would have been there for you. He is extremely fortunate for you although it is not easy for you but what memories you must have!! skmf - when we book the party remember nothing is too good or not enough! Marsha - thank yby Shar - Huntington's Disease Support Center
I know HD is hard but when I think it is as bad as it can be I know it can be worse if you add another devasting illness such as cancer, etc. My father smoked and said if he ever got cancer he would not take radiation, etc. Guess what - at age 57 he got lung cancer, quit smoking,took two sessions of radiation and it gave him 18 more months. I can remember him being on oxygen and not wantingby Shar - Huntington's Disease Support Center
Thank you to everyone who replied for your views. This is a tremendously great and useful website and I would not want to change it. Maybe I am in denial of some attributes of the disease or I have always taken the stance to look at the positive in every situation I am faced with. I guess that gets me through it a little better. I think it is good people can come here and ask for recommendaby Shar - Huntington's Disease Support Center
I am probably taking a big risk with this note but here goes: I found this site less than a year ago and I think it is fabulous for information on what can help a person with HD - medicines, behavior, etc. I also think it is wonderful having a group of people who understand what each other are going through. This would be the case with anything in life whether it be an illness, an accident,by Shar - Huntington's Disease Support Center
I always try to remember something my husband with HD said many years ago - "I didn't ask for this illness". A counselor also said to me once that when a person with HD does things such as you were explaining - that it is not the person behind those actions but the HD behind those actions which makes sense. It is harder to deal with because many times the person with HD doesn't realiby Shar - Huntington's Disease Support Center
My daughter dated a wonderful young man and told him of the HD and they have now been married 8 years. When my son dated his wife he told her on the first and second date about HD as he told me he didn't want her to get involved then find out when she was already invested. They have now been married 5 years and she is a terrific gal. She is also in the medical field. The people my childrby Shar - Huntington's Disease Support Center
Hi, My husband has HD as did his father and grandmother. My husband's mother has told me both of them had nervous stomachs which can be a part of HD. I asked her what the symptoms were but she didn't know - she just knew they had nervous stomachs which was part of their HD. Have any of you heard of this? If so, can you inform me as to what the symptoms might be? My husband has had a paby Shar - Huntington's Disease Support Center
Marsha- We are all thankful for you and want you to take the time to do what you NEED to do to take care of your life and self!by Shar - Huntington's Disease Support Center
I debated about replying to this message as I posted something sometime ago and it set quite a controversy but alot of thoughts came out which were good. There are so many ways to look at this. I am a mother whose husband has HD and my two children are at risk. I have two beautiful little granddaughters at risk now as well. I struggle alot with what they have to think about and pray they neveby Shar - Huntington's Disease Support Center
Debra- I had some of the same type symptoms in my husband. The dr put him on risperdal which helped a great deal but I didn't like the effect it had on him and there were a couple side effects we didn't like. Someone on this site emailed me and said to try Zyprexa. The dr took him off the risperdal and on small dose of Zyprexa and it has done very well and has helped with some of the same symby Shar - Huntington's Disease Support Center
Please tell Rikki Happy Birthday from me a bit early. I am so happy for her and all of you. That is what people and life are all about! Sharonby Shar - Huntington's Disease Support Center
Marsha- What a wealth of information and what insight. What an absolutely astounding article that I will refer back to many times. Thank you so very very much for the beautiful, truthful article I am grateful for! Sharonby Shar - Huntington's Disease Support Center