Doesn't sound promising. Willby Will - Huntington's Disease Support Center
Kelly, Another great one. You have a gift for writing. Willby Will - Huntington's Disease Support Center
Aw shucks. I'm glad to help. I'll be at the HDSA convention in Louisville the end of June. In a couple of weeks I'll be attending the 50th reunion of my high school class in Massachusetts. YIKES! DOUBLE YIKES!! Willby Will - Huntington's Disease Support Center
Barb, Good for Laurie (again). I just made a modest contribution. Willby Will - Huntington's Disease Support Center
Welcome. I'm sorry you're here, but you'll get a lot of support and guidance from this group. The recommended protocol for testing includes genetic counseling, a neuropsych exam and the blood test. It's only a recommended sequence. With a family history of HD and what appear to be definite symptom, you can ask any doctor to order the blood test. It will cost around $300 to $400 and the resultby Will - Huntington's Disease Support Center
Congrats to everyone. None of you look old enough to be grandparents! Willby Will - Huntington's Disease Support Center
Robi, Thank you for everything CHDI is doing. If there is anything the community could do to mitigate this unwanted publicity, let us know. Willby Will - Huntington's Disease Support Center
Mare, I have never used CoQ10, just creatine. Part of that decision dates way back to Jerry Lampson, the founder of HD Lighthouse. He didn't think Q10 was effective and was against a clinical trial. The trial was funded and is underway. I've forgotten the name of the trial. More recently, folks who understand the science have said both supplements work the same way for neuroprotection. So,by Will - Huntington's Disease Support Center
Barb asked about Matt Ellison. He is a great person. www.HDYO.org That stands for HD Youth Organization. Willby Will - Huntington's Disease Support Center
Mike had a good point about the children probably knowing they're at risk. Some kids are better than others at dealing with this. Maybe you could figure out some regular activities to take them out of the house and get their minds off diseases for a while. There's also a group called the National Youth Alliance, a part of the Huntington's Disease Society of America (HDSA). It's a way for youth iby Will - Huntington's Disease Support Center
I'm touched that he would want to help. Two people who might give you some perspective are her doctor and/or a social worker (if she has one.) If she is being treated at a Huntington's Center of Excellence, social workers are a great resource. Of course you would want the son's permission before you contact them. Willby Will - Huntington's Disease Support Center
Chloe, Here's my current supplement regime: I'm gene positive with a low CAG of 40 and symptom free at age 67. I think these and my lifelong exercise routine (running) are helping keep the devil from my doorstep. I don't think any of these would be harmful for a gene negative person. I recently switched my creatine to CON-CRET, a new chemical invention named creatine hydrochloride (HCL)Lby Will - Huntington's Disease Support Center
Chloe, I don't have a specific answer for vegans. but here's an excellent piece by Dr. LaVonne on healthy lifestyles for HD. Willby Will - Huntington's Disease Support Center
Good to hear from you Dusty. You're one of my HD heroines. If you can figure out a new computer you're doing just fine! Willby Will - Huntington's Disease Support Center
Barb, You're a good person. Here's a big virtual {HUG} for you! Willby Will - Huntington's Disease Support Center
He and Michael were true warriors. May they be at peace together. Willby Will - Huntington's Disease Support Center
Patty, I'll be there. Just look for a scrawny guy with grey hair. Willby Will - Huntington's Disease Support Center
Peggy, In place of. Willby Will - Huntington's Disease Support Center
I have been taking one capsule of CON-CRET daily for the last 5 days. That is supposed to be the equivalent of 5 to 10 grams of creatine monohydrate. The recommended dosage for bodybuilders is one per 100 pounds of body weight. I have been taking between 5 and 10 grams of monohydrate ever since I tested positive in 2003. I have tried everything to overcome the gastrointestinal side effect withby Will - Huntington's Disease Support Center
Prayers up for you. May you both be at peace. Willby Will - Huntington's Disease Support Center
Just to be clear, I was only commenting on the credibility of one Adam Feuerstein, a writer, and no one else. Willby Will - Huntington's Disease Support Center
'Nuff Said. Willby Will - Huntington's Disease Support Center
EricR, Thanks for the tip on a new form of creatine. I had not heard of it. Maybe one of our folks with knowledge of biochemistry can tell us if it will cross the blood/brain barrier the way creatine monohydrate does. I'm going to try it anyway. If it eliminates the GI problems many of us experience, it will be worth its weight in gold. I'll know immediately if that works! Willby Will - Huntington's Disease Support Center
I would point out that HD Buzz was recommending against taking megadoses. Also, their article was not about the big CREST study whose results are due this year, I believe. We are all experiments of one and many of us have seen benefits from moderate doses. I respect HD Buzz's scientific viewpoint, but I'm not going to stop taking a safe supplement because one study didn't have perfect results.by Will - Huntington's Disease Support Center
Peggy, Yes!! the ENROLL study, formerly known as COHORT. About halfway down the page is a link to the study locations. Willby Will - Huntington's Disease Support Center
Peggy, It might be time to test. A positive result might help with your employer as Marky's did. I spent part of my career in finance so I can understand your frustration with mistakes. It might be due to being preoccupied with the possibility of having the HD gene. Before I tested I was experiencing minor memory lapses that I assumed were due to aging. I was forgetting meetings at work aby Will - Huntington's Disease Support Center
Well said, Howard. I expect Marsha or Steve can make this go away if they persist. Our openness as a community is one of our strengths and I hate to see someone taking advantage of it. Willby Will - Huntington's Disease Support Center
Creatine will do that. She also might have an electrolyte (sodium) imbalance. If there's too much of it in your system the body will want more fluid to keep the proper balance. Cutting down 0n salt might help. Willby Will - Huntington's Disease Support Center
kelki's post is from Gene Veritas, someone we know well. You can see my whole story at Start at the bottom with "Running From The Devil". Willby Will - Huntington's Disease Support Center
I've been to one HD World Conference and two HDSA ones. All have been informative and a lot of fun. It's easy to make new friends since we all have something in common. I would recommend staying at the conference hotel. They will have a special rate and it will be easier to get to all the events. Teens also seem to have an easy time connecting. Usually there are several events for them. Willby Will - Huntington's Disease Support Center