I wish it had been effective but I am not depressed because I didn't find the mouse data to be at all convincing. I would be much more discouraged if the mouse data had looked very promising. I will be depressed if creatine doesn't work because the mouse data looked and the Phase II data looked good.by Marsha - Huntington's Disease Support Center
The Huntington Study Group has ended its Phase III trial of CoQ10. An early analysis of data shows that it was not slowing disease progression and there was no point in going on with it. Here is the article:by Marsha - Huntington's Disease Support Center
Just home from our grandson's second birthday party. Glad you found the info. Will be thinking of you and sending up prayers. Much love, Marshaby Marsha - Huntington's Disease Support Center
I agree with Will. Always share with your doctor. If you make the decision to take say a supplement, it isn't helpful to ask a doctor if you should take it because he or she can only say yes if Phase III clinical trials show it to be safe and effective. However, if you ask if there is any reason that you should NOT take it, then you can have a good discussion.by Marsha - Huntington's Disease Support Center
Since your mother never tested and died of other causes at 49, you are still at risk. It is certainly a good sign that she didn't have decisive HD symptoms (many people without the HD gene suffer from anxiety), but it is still possible that she had the gene and died before onset. Onset can vary from infancy to very old age even though the average age is 39.5 years (with onset defined as the prby Marsha - Huntington's Disease Support Center
Sandi, thanks for recommending my writing! I am not in the medical field though. I have a bachelor's in psychology and a Ph.D. in sociology. I taught psychology and sociology for several years, did policy research for a nonprofit for three and then spent most of my career as a consultant evaluating social programs. I had to give up my consulting practice when my first husband needed more carby Marsha - Huntington's Disease Support Center
You will find out in four weeks whether her symptoms are caused by HD or by the stress of worrying about HD. Either way, there is no need to rush into making a commitment. There are things you love about her and things that give you pause, just as with anyone to whom we might be attracted and pursuing a relationship. At some point, you will need to decide whether the things you don't likeby Marsha - Huntington's Disease Support Center
At some point, you may need to tell him. If you are both just enjoying casual dating and not looking to a future together, then I don't think there is any need to discuss medical issues. If it seems that the relationship is getting serious, then I would. You don't want to risk getting hurt by waiting until you are head over heels in love. When and if it is time, I would explain that you haby Marsha - Huntington's Disease Support Center
My thoughts on this issue are very much influenced by a book called "How We Die" by Sherwin Nuland. We like to feel that we are in control of our lives. We set goals and standards and in modern times, we have decided that we will die with dignity and we have thus set ourselves yet another goal that may be impossible to achieve. It's not that we shouldn't expect to be treated withby Marsha - Huntington's Disease Support Center
I found your comment to me rather ominous, Ken. It made me uncomfortable in a way that Barb never does. And come on, Barb has HD. She is not going to be subtle and tactful when she disagrees about something. I remember once when I said that I didn't think anything much was going to come of the research on HD and the immune system. She felt very strongly that I was wrong and that the connby Marsha - Huntington's Disease Support Center
Thank you, Shar, for your lovely words. And thank you, Barb, for your support.by Marsha - Huntington's Disease Support Center
A friend of mine sends out research news to people in her local HD support group. Every single time she posts about a new study with stem cells derived from ADULT SKIN CELLS, she gets a nasty email from someone who accuses her of supporting the murder of babies. Every single time. She tried writing to him and explaining that these aren't embryonic stem cells but are derived from adult skin cby Marsha - Huntington's Disease Support Center
Lorrie, do you happen to know your FIL's CAG count? I am wondering if it contracted when the gene was transmitted to your husband. Also, did your father in law experience any head injuries before he got sick? Did he take medication during the period in which he was abusive?by Marsha - Huntington's Disease Support Center
While we all get irritated with comments now and then (I am still upset over the stem cell thread), we should remember that we are all part of the same community. We are bound to get on each other's nerves, just like family members do.by Marsha - Huntington's Disease Support Center
I don't have the gene so I hope it is okay to comment. Lorrie, if you want to have this child, have this child. It's a reduced penetrance range so that means that the child may never get the illness. And I honestly believe treatments are on the way. I have been disappointed at how long they are taking, but I do believe that they are coming in the next few years and even if your child is goiby Marsha - Huntington's Disease Support Center
This website was founded on hope! There is no one here saying that there is nothing you can do to delay onset. No one at all. We have an 18 year history of looking at mouse studies for 'best bets' and reviewing the literature and advocating for clinical trials. The original HD Lighthouse was founded in 1996; Steve and I took it over in 2004 when Jerry Lampson died. We started HDAC in 2000 aby Marsha - Huntington's Disease Support Center
Tyler, that sounds like a good plan to me.by Marsha - Huntington's Disease Support Center
Dysphagia is usually a late stage symptom as Patty wrote but as Lizzie Ann points out, it can occur much earlier. There is so much variation with this illness.by Marsha - Huntington's Disease Support Center
Running for Life, listen to Howard. He and his daughter Allison know a great deal about HD, especially about living positively with HD. Will has the HD mutation. He is in his late sixties. He has had two good careers, one in the military and one in public service. He has a happy marriage, good friends, and hobbies. He helps with this website. Yes, he exercises and takes supplements, bby Marsha - Huntington's Disease Support Center
No they are not. If I had HD, I would certainly approve of researchers taking one of my eggs and putting one of my skin cells in it to make stem cells. That cannot produce a baby. Now, you can make an argument that there is something immoral about this procedure, we have free speech here, but you cannot say that it is a fertilized egg since no sperm is involved at all.by Marsha - Huntington's Disease Support Center
I am not deleting anyone and I am really really annoyed here. Does anyone read or just grab an opportunity to make a political post? THESE ARE NOT FERTILIZED EGGS. they are pseudo-embryos made by putting an adult skin cell inside an egg. The environment of the egg turns the adult cell back to an earlier stage of development, to the stem cell level. I have explained before that HD stem cby Marsha - Huntington's Disease Support Center
Superhumans? No. They learned to detect differences in light intensity faster than people without the HD mutation. That says nothing about mathematical ability, reading comprehension, and numerous other tasks. I admire your enthusiasm and positive attitude but I am very concerned about your living your life as if you have HD. What about college? What about work? Will someone supportby Marsha - Huntington's Disease Support Center
Not everyone gets symptoms within a normal life expectancy. I know one man whose was tested at 92 with a 39 count who was asymptomatic. Some of his children and grandchildren (one of whom I knew) did get expanded repeats and symptoms; because the grandmother had died at a younger age, it had been assumed that she must have had the gene, but to everyone's surprise it was grandpa. But yes, 36-by Marsha - Huntington's Disease Support Center
There is nothing wrong with you! You've done great and enhanced his quality of life while you could. Now you have a dilemma as to whether to continue. What do you want to do? You can withdraw, citing the distance, and he can be appointed a public advocate. I think it is fine for you to do that. The hospital tried to find a close nursing home and couldn't so I think everything has been doneby Marsha - Huntington's Disease Support Center
Wonderful news!by Marsha - Huntington's Disease Support Center
Is she taking an antidepressant?by Marsha - Huntington's Disease Support Center
One thing that I learned early on in the HD community is that people's participation varies over time and that is okay. There are caregivers, for example, who participate regularly and then a crisis occurs and we don't see them here or hear from them because they are busy with extensive caregiving duties. There are people at risk who reach out for support when they decide to test and after awhby Marsha - Huntington's Disease Support Center
I am so sorry that you were let down. Would you like to PM me with more information? I really feel sad about this. I met my husband and my best friend in the MGH HD chatroom and some life long friends here in the forum so I know that it is possible to make good friends in the HD community. Perhaps the two of you seemed to be on the same page but really were not; that happens with neighborsby Marsha - Huntington's Disease Support Center
Is Huntington's disease known to run in his family? If not, was he adopted? To answer your question, in the case of my first husband it was the reversion to childish responses in a formerly mature man. Here's an example, we had been picking up fast food tacos, asking for mild sauce packets and getting hot sauce packets instead. After the first mistake, I would naturally check before leaviby Marsha - Huntington's Disease Support Center
Jillian, I am sorry that you have tested positive but glad you found us. Is there anyone who can act as an advocate for you? Is your father alive; can he help? I think you need to get in touch with a social worker right away. Is there one attached to the place where you tested? Someone needs to contact Human Resources on your behalf and tell them that you do not have a drinking problem, youby Marsha - Huntington's Disease Support Center