I also feel a cure is down the road. Ron, I do not know anything about you but your reply was very depressing. I cannot speak for you because you may be in a very tough stage of your life whether it be having HD or supporting someone who does and I know both are tough as I am there now. I only hope you can have some hope. I stopped reading this forum for a short while as my husband (who hasby Shar - Huntington's Disease Support Center
I hope Hd is caused by that kind of mutation but don't know. Does anyone know. If not, I will contact the researcher in Pennsylvania to find out.by Shar - Huntington's Disease Support Center
Our son sent us a link to an article about a pill being tested which has had wonderful results which, if taken daily, may possibly help many genetic diseases. I will type the link as not being real computer literate I do not know how to highlight it. The link is: It talks about a nonsense mutation - do any of you know if Huntingtons is a nonsense mutation? Thanks. Sharonby Shar - Huntington's Disease Support Center
As I had posted before my husband was involved in this trial and his exiting visit was last week. There were 7 at the clinic he was at - 3 felt they were worse, 2 felt no change, 1 felt there might have been a somewhat positive change and my husband felt no change or if there was some, it was ever so slight. Prior to the trial I felt he had actually done better using the Omega 3 fish oil, creatby Shar - Huntington's Disease Support Center
Maybe many of you knew, however, I did not that Julie Andrews is a Huntington's advocate. I just read an article on this in the March/April 2007 edition of Neurology Now.by Shar - Huntington's Disease Support Center
Eric- Thanks for your take on this thread. I always like to hear your thoughts as I think highly of them. I wrote a reply which is what I try to think and the reply you sent is the reply that hurts to think about. I wish God were here to tell me what the right thing is. Anyway, if I could ask you a question which relates to this subject as well and one I ponder about often also? If your parby Shar - Huntington's Disease Support Center
Dear Lea- I too am in the same situation as you. My husband's father, family and grandmother had HD. We were not around any of them much so as my husband progressses I find more what HD is really all about. First of all, the only person who can ever judge someone else is God. No one else is capable of doing such a feat. God would never say it is wrong to have a child, ever. I also have strby Shar - Huntington's Disease Support Center
Hey awesome! I learned something today! Sharonby Shar - Huntington's Disease Support Center
Heather and Barb- I will try - here goes -by Shar - Huntington's Disease Support Center
Heather- Thank you - between my younger coworkers, my children and their spouses and people like you I may become a computer guru yet! Thanks. Sharonby Shar - Huntington's Disease Support Center
Hi, My name is Sharon and my husband and I live in Nebraska. He is 58 and has had HD symptoms for about 12-13 years. We have two grown beautiful children and their beautiful spouses, as well as the joy of our lives which are two beautiful granddaughters. Can you tell I am blessed and proud? My husband and his family have never been tested, however, his grandmother, father and several firstby Shar - Huntington's Disease Support Center
Katie- I never watch The View but made a point of seeing it today. What a beautiful, courageous young lady you are! We all thank you for exposing an illness that many need to be aware of in order to find a cure. You did this for us. Keep up the good work and I will do as much as I can to get us help for HD as well. I have a daughter who is a few years older than you who is also at risk. Iby Shar - Huntington's Disease Support Center
Heather- I feel the same as you do and I think the people on this forum do as well.l They are a great bunch of people who I really need and I as well feel this sight is a Godsend. I don't worry about spelling - as long as I can understand it that is what counts. One thing - how do you get the little jumping character in your email? I love him! Sharonby Shar - Huntington's Disease Support Center
Alice- I appreciate your thoughts too. I know getting divorced was no light matter and that the decision caused alot of heartache and torture in your life as well as it is in mine trying to figure out what to do. It is too bad states don't have laws in which the spouses can divide their assets 50-50 in situations as these so that divorce is not financially necessary. I plan to write our repreby Shar - Huntington's Disease Support Center
Barb-I have strugged with those thoughts as well. We had no money when we married so neither of us married for money and money has never priorly dictated anything in my life. People are much more important than money, however, in this situation I have to also look at can I survive and help my husband financially and I would like to be able to see my children and grandchildren and help them as thby Shar - Huntington's Disease Support Center
Hi, I am home on break from work for a couple hours and have read all of your replies thus far. I thank you very much - it helps to hear from others so much. On the "spousal protection law" our state does let you keep the house, a vehicle and $100,000, howevever, my husband and I have saved quite a bit more than that in our IRA. I only think since our IRAS are equal that should theyby Shar - Huntington's Disease Support Center
I have had many thoughts in my mind I have had trouble dealing with for quite sometime now as everyone has in this situation. I had been away from the Forum for awhile as I was out of state. When I read the email from "Confidential" I was very saddened and hope most do not feel this way, however, I also realize he may have been going through more than he can handle and maybe his spoby Shar - Huntington's Disease Support Center
Robert- On each the sign we saw was subtle twitching which got worse over a long period of time, however, at one point each of them was put on medication which pretty much alleviated most of the movement. I do not know the CAG count of either. You have had some excellent advice on previous emails of people who have dealt with this challenge for sometime. Best if probably do not self diagby Shar - Huntington's Disease Support Center
Robert- You are in my thoughts and prayers. My husband, age 58, has had HD since 45 anyway. I just wanted you to know that his sister got HD in her early 30's and one of my husbands lst cousins got HD early 30's as well. They are both in their 50's and even though the disease has take some abilities from them they are still here and fighting and some days not too bad. I know this has toby Shar - Huntington's Disease Support Center
I just wondered if anyone knows of any insurance company whose application for long term care insurance doesn't ask about Huntingtons? In all the years, for some reason, we didn't even think of getting a policy for my husband who has HD, and now I would have given anything if we would have. The only two applications I have looked asked does ask about Huntingtons specifically in addition to otheby Shar - Huntington's Disease Support Center
My husband has been in the Miraxion trial for a year in April. We go next month for the final visit and he is possibly going to be able to take the drug indefinitely until a decision is made on marketing or not. There were 7 people in the trial at the site he is associated with. Out of the 7 - 3 reported getting worse, 2 reported no change, 1 reported a positive change and my husband is notby Shar - Huntington's Disease Support Center
Barb- I just read where you said you are just not able to read, focus and remember as you once did. I find this true as I get older and you know what, it is my husband that has HD!! I don't know how to make the smiley faces people are sending you but consider this !!!!!!!!!!!!!!!!! another large hug! Hang in there - we all are - and we all need YOU! Sahronby Shar - Huntington's Disease Support Center
Barb- There are so many things I would like to say to you but the wording doesn't always come out right for many of us - you are such a big part of this website and although I found it only a short time ago you are so instrumental on so much of it - you are doing so much to help others. I want to help you and wish you were closer - I would love to give you a great big HUG!! You hang in theby Shar - Huntington's Disease Support Center
She must have TWO wonderful, awesome parents who have raised her and taught her the important things in life!! Congratulations for having a beautiful daughter inside and out.by Shar - Huntington's Disease Support Center
Nancy, My thoughts and prayers are with you. You will make it through this. You have many friends as you can see by all those who have replied to your message here. I would take one day at a time. Life can seem so overwhelming for many people, HD or not, by looking ahead too far. One day at a time seems to make things more manageable. Do not make any major decisions for quite sometime. Thby Shar - Huntington's Disease Support Center
I forgot to add on the sinus infection - we live where it has been 28-32 for the high in temperatures. I will come home and he has the windows open. I have told him we will have a $500 heat bill if he doesn't keep them closed. I told him he could open them a few minutes if he feels it will help. He just says he can breathe better and opens them. The dr said the sinus infection happens to manby Shar - Huntington's Disease Support Center
My husband is 58 and has has HD since 45 although exercises, reads and is probably doing quite well other than behavioral things which I am the target of. I realize it is the HD even though it is hard to be called stupid each day, told I should wear an "S" on my forehead due to this, etc. This last week he has talked about doing so many things like taking money out of his IRA to do stby Shar - Huntington's Disease Support Center
How about seeing if your state congressman, senator, etc. would help in this case. Also, would there be a local HD clinic site near your daughter that would intervene in your behalf as well? I will pray for help for your daughter and I know she will get home soon.by Shar - Huntington's Disease Support Center
I think this would be great. So many have come before many of us and it would be a tremendous help if it were possible. Thank you.by Shar - Huntington's Disease Support Center
My husband has been taking creatine for about 5 years now. He says when he takes it he doesn't shake as much and he feels it really helps the HD in many ways. He usually exercises when he takes it. What he has used are creatine tabs in orange or grape flavor and he lets them dissolve in his mouth. He doesn't seem to mind them at all. The ones he uses are NuCare Creatine Powertabs. The lowesby Shar - Huntington's Disease Support Center