Sure. Huntington’s Disease Specific • CON-CRET Creatine HCL one capsule daily 750mg (Amazon.com) • Wild Blueberry Concentrate - equivalent of a cup of berries – morning (Brownwoodacres.com) • Pomegranate Concentrate – equivalent of one fruit – morning (Brownwoodacres.com) • Fish Oil capsules - 3 a day with meals - 1,800mg EPA total (Twinlab MegaTwin from Vitaminshoppe.coby Will - Huntington's Disease Support Center
Barb - You're one of the strongest people I've ever known. You'll beat this one also. Big hugs! Willby Will - Huntington's Disease Support Center
Welcome! You will be among friends here. There is a wealth of information on this site. Ask away if you need directions to a certain topic. Will North Carolina USAby Will - Huntington's Disease Support Center
Good news. Have you had the pneumonia vaccination? That might prevent another bout. I had that and the shingles one and have had neither! Willby Will - Huntington's Disease Support Center
Chris, Welcome. I won't get into all the pros and cons of testing. You could search this site on that subject and you'll get two earfuls on both sides. Your family doc can refer you to a testing center. When I tested the total cost was around $1,200 which included $300 for the blood test. Mine was covered by insurance - Blue Cross/Blue Shield. I didn't try to hide anything about what it was fby Will - Huntington's Disease Support Center
My family found out about HD and didn't tell me for several years. When I tested positive I was quite annoyed that I had lost time implementing an exercise and supplement regimen that I believe is helping keep me symptom free. Tell him. Willby Will - Huntington's Disease Support Center
All, I'm sorry to hear those things about HD Reach. I do know Dr. Walker at Wake - he's my ENROLL person. He and his staff are wonderful. Willby Will - Huntington's Disease Support Center
The reminds me of Rules For Martinis from my missspent youth. "One is not enough. Two is too many. Three is not enough." Afficionados will understand. Willby Will - Huntington's Disease Support Center
Joe, I don't attend regular support group meetings either (due to the evening times), but they are well attended. They're in the process of starting a new group in Winston. Here's an example involving me. Shortly after HD Reach was started, I visited a Drug Discovery Lab at Duke run by PhD Dr. Don Lo, who is one of two founders. Dr. Mary Edmondson, a Raleigh MD with wide experience with Hby Will - Huntington's Disease Support Center
I know the folks involved with it. They're doing an excellent job. I'm an annual contributor to them. Here's their website: Willby Will - Huntington's Disease Support Center
I've had it twice - no fun. Rest, rest. rest! Willby Will - Huntington's Disease Support Center
I got year end solicitations from AARP, the SPCA, Navy Marine Corps Relief Society, Wounded Warrior Foundation, HD REACH (North Carolina Support Group), HD Association of Canada and HDSA. None of those bothered me, but I don't have Fred's problem. Willby Will - Huntington's Disease Support Center
Next year's HDSA annual convention is going to be in Dallas in June - not far from you. Willby Will - Huntington's Disease Support Center
Everyone should read this. It's a terrible story about her sister's passing but a joyful, hopeful vision for the future for all of us. Willby Will - Huntington's Disease Support Center
Steve and Marsha do a great job with the forum. They're even better people in person! Willby Will - Huntington's Disease Support Center
I had my annual ENROLL study this week at Wake Forest with Dr. Walker. For the first time in maybe 8 PREDICT and ENROLL exams, I couldn't remember the damn 3 words! I'm sure many of you know what I'm talking about. In my defense it was near the end of about an hours worth of intensive neuropsych testing. I did pretty much nail the Stroop test - that's the insidious red/blue/green thingie. I alsoby Will - Huntington's Disease Support Center
Try this from my blog. Willby Will - Huntington's Disease Support Center
Willby Will - Huntington's Disease Support Center
I'm gene positive with a low CAG count (40) and am fortunate to be still symptom free at age 68. I began my supplement regimen when I tested positive in 2003. After a few months I noticed my brain seemed to be sharper. My short term memory seemed better and driving seemed to have improved. I felt more comfortable driving right next to barriers. It seemed like my eyesight had improved, but my aby Will - Huntington's Disease Support Center
I'm not terribly disappointed in the CREST-E results. As others have said, it's important to know what doesn't work for most people. I think there is still anecdotal evidence that it is beneficial for some people. It's part of the supplement regimen that is helping keep me symptom free at age 68, so I'm going to keep taking the HCL version. As many know, I am part of a group of 4 people calledby Will - Huntington's Disease Support Center
Brum, Having the HD gene is not a death sentence. Many of us with it are living full and productive lives. Click on "Community" at the top of this forum to read stories about how people are thriving in spite of it. Willby Will - Huntington's Disease Support Center
Julie, Thoughts are with you. They're both in a better place, free of HD. Willby Will - Huntington's Disease Support Center
Thanks, Howard and willy. My blog post about Steve is at Willby Will - Huntington's Disease Support Center
Ready on the Right. Ready on the Left. The Firing Line is Ready. You may commence firing! I don't see any reason to keep those. Willby Will - Huntington's Disease Support Center
Steve, I looked at my account in the Control Center and it said my last activity was on 02/07/2036 01:31AM Did you build a time machine? Willby Will - Huntington's Disease Support Center
Runningfor life, This sounds like your previous posts on "cures" for HD, which you may or not have. If you're interested, I can get you a great deal to buy the Brooklyn Bridge for $100. Willby Will - Huntington's Disease Support Center
Debi and Amber, Many years ago I had an MRI that showed bulging discs in my lower back that supposedly was causing pain. I happened across a pioneer in treating pain, Dr. John Sarno. I read his books, accepted his theories completely and healed myself. There are legions of stories about failed back surgeries and he has successfully treated those patients. I have no financial interestby Will - Huntington's Disease Support Center
I'll let Marsha comment on the technical side of this, but I think they've cobbled together some real studies to sell their own stuff. There's nothing wrong with eating wholesome, raw food, but it's not going to cure HD. Just my opinion. Willby Will - Huntington's Disease Support Center
I echo what Marsha said. I don't know if anything can or should be done about this situation, but I think HDSA ought to know about it, I would suggest e-mailing the lfollowing: Louise Vetter, CEO lvetter@hdsa.org George Yohrling, Director of Medical and Scientific Affairs gyohrliby Will - Huntington's Disease Support Center