Natural supplements are not excluded from the requirement to have clinical trials to back up medical claims. CoQ10 and creatine are both natural supplements and both are in Phase III clinical trials for HD.by Marsha - Huntington's Disease Support Center
Running for life, the HD protein is absolutely the problem. The article you read is just one of many in the last decade or so to show that the protein aggregates are less toxic than the soluble version of the protein. And much to my surprise, there is indeed a placebo effect on movement in HD. The ACR-16 trial showed that clearly. Just because a supplement or medication is 'natural' thatby Marsha - Huntington's Disease Support Center
It is very unlikely that fetal transplants will ever be used in HD again. Several people received them back in the late nineties, at a cost of $50,000 each - FOR AN EXPERIMENTAL TREATMENT. The results weren't positive. Where HD research is going is with stem cells. My best guess is that restoration therapy will consist of the patients own adult cells, programmed to go back to the stem ceby Marsha - Huntington's Disease Support Center
My heart goes out to you. I don't know if she will post here and I am not sure she should because she too is well known, but I have a friend whose stepdaughter has done one stupid and criminal thing after another despite growing up with lots of love and being taught differently, just like your sister. She doesn't just lie to get out of trouble, she tells senseless lies that don't even benefit hby Marsha - Huntington's Disease Support Center
Congratulations! My new grandson was born today too. Isn't it wonderful!by Marsha - Huntington's Disease Support Center
Welcome back! It certainly has been awhile. Still no treatment but I keep being told that we are close to gene therapy trials although I don't know which method will make it to the finish line. I think it will work, always have. I also think we have proof of principle that restoration therapy in the form of stem cells works. That's coming too but will take longer to be available. Time hasby Marsha - Huntington's Disease Support Center
Molly and Sarah, I am so sorry that things did not work out as you had hoped. I will be thinking about you.by Marsha - Huntington's Disease Support Center
I have sad news. Gordon Robertson, dear friend and long time contributor to the Lighthouse passed away this week. Gordon wrote about Juvenile Huntington's Disease and his son Michael's struggles with the disease. After Michael passed away, he continued his advocacy for JHD patients and was always available to talk with other parents. Gordon is survived by his beloved daughter Kirsty and beloby Marsha - Huntington's Disease Support Center
There is no need for a public apology. You are absolutely entitled to your opinions!!!! By the way, Steve has resigned from the board of HDSA.by Marsha - Huntington's Disease Support Center
If there is one thing you can find on this website, it is personal stories! Click on community and go to blogs and family life. There are stories from people with HD, caregivers, people who have tested for the gene, etc.by Marsha - Huntington's Disease Support Center
Please just go right on posting if it helps. We all need an outlet. I don't think anyone is tired of reading your posts and I know that many people are praying for you. What is happening with your husband is that as the brain damage got progressively worse, he began regressing to childhood in his thoughts and emotions. That is why he is jealous of the children, he feels that they compete foby Marsha - Huntington's Disease Support Center
I think that's it. Steve says he will work on the software.by Marsha - Huntington's Disease Support Center
Yes there is, Barb, and it looks like a major pathology.by Marsha - Huntington's Disease Support Center
The software sometimes holds up the posting of responses so that Steve or I have to approve them first. It often happens with Chicago's posts. I can't figure out what is going on. Only once did it hold up a spammer. The other posts have all been perfectly acceptable posts by forum members. Nothing objectionable at all!by Marsha - Huntington's Disease Support Center
Yes, there is a connection! Here's the article. You may want to share it with your doctor since this was an unexpected finding and one that has yet to be explained; I don't think many people, doctors included, have seen this study.by Marsha - Huntington's Disease Support Center
The forum is working and I'm here!by Marsha - Huntington's Disease Support Center
When well, people with the HD gene are no more likely to engage in criminal behavior than anyone else. After the onset of symptoms, however, they may do things that will result in arrests. Cognitive deficits can cause this. People have trouble balancing their checkbook, for example, and if they don't have help or refuse help, they can wind up bouncing checks and being arrested. Impulse contrby Marsha - Huntington's Disease Support Center
An early article that Steve wrote about ten years ago deals with incontinence:by Marsha - Huntington's Disease Support Center
I am so sorry about your positive test and for all the stress you are going through. Are you being treated for depression? I am heading for bed now so I cannot write until morning but I want to say that I do NOT think you are a terrible wife. I think that something is wrong and it could likely be clinical depression.by Marsha - Huntington's Disease Support Center
I am so sorry for your loss, RJ. Steve and I will be thinking about you and your family.by Marsha - Huntington's Disease Support Center
Depression can certainly mimic some of the symptoms of HD, but I'm a bit concerned at the neurologist for dismissing your concerns. Are you at risk, have you tested?by Marsha - Huntington's Disease Support Center
frobinso, the Lighthouse administrators (sidelined first by flu and then by a malfunctioning laptop which I have now replaced) are most certainly NOT going to delete your posts. I think they are well written. As far as PBT2 is concerned,we just won't know until the Phase III trial is done. I don't think that the cognitive results mean anything since the more tests given, the more likely it isby Marsha - Huntington's Disease Support Center
Will they be upset with you for keeping this from them when they find out later? Do they know that HD is in the family at all?by Marsha - Huntington's Disease Support Center
And if having the flu wasn't bad enough, my laptop, which is not all that old is getting hot and shutting itself off after a few minutes. Arghhhby Marsha - Huntington's Disease Support Center
Steve and I are both down with the flu. We will be back to participate when we can sit up for more than a few minutes at a time. Thanks to all of you in the community for responding to others with support and information! We have such a great community here and I am grateful. Hugs, Marshaby Marsha - Huntington's Disease Support Center
It takes about a year to adjust to a test result whether you are positive or negative for the disease. It's hard to feel good for yourself when you feel bad for your loved ones. Just keep thinking about your children and being happy for them that they are not at risk and gradually you will feel better. Also, as Cookie said, it is very common to wonder if your results were correct (don't worby Marsha - Huntington's Disease Support Center
My first husband had no off button when it came to food after his disease began to progress. We both liked food and had to be careful to keep our weight in check but after he got sick, his ability to control his desire to eat declined and he put on a lot of weight. He was 6'4" tall and so could eat quite a bit but still had to watch it. Whereas before he might eat a donut as an eveningby Marsha - Huntington's Disease Support Center
Steve's first wife, Debra Jean, passed away peacefully in her sleep Sunday night. She did not suffer at the end of her life, but simply got more and more tired. Debbie's parents looked after her in recent years, sharing the care with a nursing home known for its ability to care for HD patients. She enjoyed visits and outings with family and friends. My wonderful stepdaughter, Nichole, visitedby Marsha - Huntington's Disease Support Center
This does sometimes happen. Most Phds do not suffer from delusions or hallucinations but some do. As long as your wife is in denial and does not go to a doctor for treatment, I don't know what you can do. Protect yourself as best you can by having a witness if you have to meet with her. I am so sorry you and your wife and daughter are going through this!by Marsha - Huntington's Disease Support Center
HDSA does not pay board members. In fact, it cost Steve $2400 a year in donations to HDSA (plus expenses for meeting attendance) to serve on the board. It is a financial hardship for us and board meetings use up almost all of his yearly vacation time. He only does this because he hopes he can represent the HD community and do some good, but he is only one person and his influence is limited.by Marsha - Huntington's Disease Support Center