Can you PM me and let me know what prison he is in? I was on the board of a prison advocacy agency for many years. I know the resources in my state and may be able to network and find advocates in yours. This is not going to be easy. The medical treatment of offenders is a disgrace in this country. I was on the phone everyday for two weeks trying to get the infirmary to prescribe antibioticby Marsha - Huntington's Disease Support Center
As the disease progresses, cognitive processing slows down and it becomes harder to follow TV shows and movies. As a result, some people with the disease switch to watching more 'formula' kinds of entertainment so they don't get lost. My first husband started watching more action movies rather than complex mysteries where you have to following fleeting clues. If you watch an Arnold Schwartzeby Marsha - Huntington's Disease Support Center
Howard, great to hear from you again. Thanks for posting. Kristine, I know you didn't ask about this but I wanted to talk about sudden progression because we often get questions here about this. Sometimes it is caused by a medication change and sometimes it is caused by an infection. More often it is just a natural progression. People are often surprised to see this kind of quick progressby Marsha - Huntington's Disease Support Center
Barb posts something to you at two o'clock in the morning when most people are asleep and you respond in just one half hour that you aren't posting again. Isn't that an over reaction?by Marsha - Huntington's Disease Support Center
Welcome back! I am so pleased to read that you are doing well.by Marsha - Huntington's Disease Support Center
Jaylyn, I think what you are doing is admirable. Before responding, I have some questions. Do the professionals helping to take care of him understand HD? Are they willing to learn more from HDSA publications (Understanding Behavior in HD is a great publication)? Most importantly, do they believe him when he makes false accusations against you or do they understand that it is the disease?by Marsha - Huntington's Disease Support Center
When one stage of life ends and another begins, it is not at all uncommon for people to have dreams about the road not taken. For example, a woman who did not ever want to have children may start having dreams about having a child at midlife even though the decision she made was the right one for her. I don't think you need to do anything but listen and maybe say something like, "Yes marby Marsha - Huntington's Disease Support Center
I think puberty is much more likely than JHD. Children go through some odd stages and development is uneven across the board so it is natural for a parent of an at risk child to worry from time to time. I used to worry about mine and she tested negative as an adult. In the absence of other symptoms, I would try not to worry and concentrate on helping her with organization. If she has a cell pby Marsha - Huntington's Disease Support Center
How is her ability to communicate? There is very likely some reason behind her desire to sleep in the wheelchair and not lie down. I am wondering about sleep apnea. I have sleep apnea (confirmed by a sleep study) and when I sleep on my back, my oxygen levels go dangerously low. All I knew was that I was waking up in a panic every night gasping for breath. My doctor suspected sleep apnea andby Marsha - Huntington's Disease Support Center
Being distracted and spacy comes with puberty, at least to some degree. Is she really putting the time into studying and still having trouble learning the material or is she distracted from studying?by Marsha - Huntington's Disease Support Center
Steve and I are very fond of Jane. She really cares about the HD community.by Marsha - Huntington's Disease Support Center
Huntington's Disease is so variable. Progression can be very slow. Psychiatric/and or cognitive symptoms can begin as much as 16 years before the movement disorder.by Marsha - Huntington's Disease Support Center
Here are the articles on the background research to this trial. Cysteamine is a metabolite of cystamine.by Marsha - Huntington's Disease Support Center
Well the policy here is to support any and all advocacy efforts that Steve and I are a part of. Thanks for your post. Our advocacy group has the booth and we are going! We are working with Melissa Billardi and her colleagues at Help 4 HD international. With input from the whole group, I wrote a flyer aimed at police in the field which we will be handing out. We will have a laptop presentatby Marsha - Huntington's Disease Support Center
Even with supplements that many people take here because they are safe and have shown some effectiveness in mice, nobody is talking about 'cure.' We are talking about staying healthier longer so as to benefit from more effective treatments in the pipeline. The huntingtin protein is so important in the brain and has multiple function that the mutant form causes literally hundreds of alterationsby Marsha - Huntington's Disease Support Center
I have argued that new endpoints were needed for a decade now because I feel that the UHDRS and the TFC scale do not pick up on more subtle differences that are still meaningful for quality of life. However, I did not expect this study to yield good results and have been saying so since 2005. The bioavailability issue was never resolved and the results in the mice were inconsistent. It is myby Marsha - Huntington's Disease Support Center
Yes, it could be an involuntary movement.by Marsha - Huntington's Disease Support Center
Of course I was hoping he'd spend more time with me after those work projects were finished, but I cannot compete with another software challenge!by Marsha - Huntington's Disease Support Center
Welcome to the Lighthouse, Mary. I think the reason you are not getting many responses is that there is just no way to tell at this point whether you are seeing symptoms. In fact, even with more possible symptoms, it is hard to tell. When I first joined the online community late in 1997 (the old MGH chatroom), we had eight regular chatters in row who were at risk and decided to test becauseby Marsha - Huntington's Disease Support Center
Oh and the moderators, ie me, do not evaluate content before approving mobile submissions. As long as I recognize a regular poster, I approve it, sight unseen. The software just does not respond well to posts from mobile phones. It also doesn't organize the site properly for mobile phones. It is irritating for me too because I would love to manage this site from my mobile phone. Spam could bby Marsha - Huntington's Disease Support Center
Nope, it's not.by Marsha - Huntington's Disease Support Center
Please keep in mind that this site is run and funded entirely by Steve and me out of our household budget. Before we had the registration system, we had more than 100 spam posts a day. Now there are usually only a few posts a day. These spammers are not using the old robots to post, they are registering as individuals. We could slow them down by making them read and duplicate those funny lby Marsha - Huntington's Disease Support Center
Our columnist Will has a new article up: Thanks, Will!by Marsha - Huntington's Disease Support Center
Mike, since it will be the longest answer, I am going to tackle your second question first. The answer is that we don't know. Sometimes in research, we know what we don't know, ie we have a series of question in mind that need to be answered. For example, at first we didn't know if stem cells introduced into the brain could survive. We now have proof of principle in animals that they can.by Marsha - Huntington's Disease Support Center
Remember, just because you have HD, it doesn't mean that you can't have other unrelated medical problems (wish it did!). I am not aware of low blood pressure being associated with HD. My ex, who has HD, has high blood pressure which has been very difficult to bring down. His doctor doesn't connect that to the HD though. I would talk about this to your doctor and try to get to the bottom ofby Marsha - Huntington's Disease Support Center
This is very encouraging. I remember talking with Jerry the Lighthouse founder back in the days when HDAC and the Lighthouse were separate sites and agreeing with him antisense gene silencing would probably be the cure. Let's hope that Isis can pull this off, but if they can't there are other pharmaceutical companies frantically trying to get their RNAi technologies to trial too. And Dr. Jby Marsha - Huntington's Disease Support Center
I haven't found anything in the research literature to suggest a link between soy and HD. As for gluten, a disportionate number of HD patients have a gluten intolerance or celiac disease. Not everyone, not even most, but more than you would expect given its occurrence in the general population. As for dairy products, here is the history. Many years ago, some researchers were looking for fby Marsha - Huntington's Disease Support Center
The majority of people with HD do well on SSRI antidepressants (such as Lexapro) so one of these is usually the first type of antidepressant to be prescribed. They boost BDNF, a protective protein known to be reduced in the brain of HD patients. However, there is no one antidepressant that works well for everyone and some people do not respond well to SSRIs. Even within SSRIs, some patients wiby Marsha - Huntington's Disease Support Center
That is very, very disturbing.by Marsha - Huntington's Disease Support Center