DB - One of the most important organs a pHD can donate is their brain - for research. I've made arrangements to do that at the COE at Mass General Hospital in Boston. Other organs can be donated as well as the brain. Willby Will - Huntington's Disease Support Center
Try Vitaminshoppe.com I've been getting all sorts of stuff from them for several years. They're extremely reliable. I spend a little more money to get micronized creatine - it dissolves far better and only leaves a tiny trace of grit in your mouth. Willby Will - Huntington's Disease Support Center
Fred - I had a TS clearance also. The reason they dig really deep into your background is to find anything you could be blackmailed for. Being HD positive could fit that. Willby Will - Huntington's Disease Support Center
Carol - www.brownwoodacres.com has wild blueberry concentrate and capsules. Willby Will - Huntington's Disease Support Center
Take a look at the graph about halfway down this page: It looks like wild berries have about twice the antioxidant capacity of cultivated. Willby Will - Huntington's Disease Support Center
Spectacular work. My artistic talent could be contained on the head of a very small pin. Woody Guthrie was a talented painter as well. HDSA sells a book of his work on their web site. I've not seen it, but I sent it to my brother as a Christmas present. hdsa.org - HDSA Marketplace. Willby Will - Huntington's Disease Support Center
l- I'm so sorry the news wasn't what you wanted to hear. That nurse surely feels about as low as you do right now. When we got my positive result, my wife said something to me on the way back to the car that was very comforting. She said, "Will, you're the same person today you were yesterday. You'll be the same person tomorrow and for years to come." Your husband's and my CAGby Will - Huntington's Disease Support Center
I'd vote for a merger to eliminate duplication. I frequent both sites, but I'm more comfortable at HDL. Like Barb, I prefer the message board format there to this one. WBby Will - Huntington's Disease Support Center
Tracy, Another thought. I've thought about writing a book combining my battle against HD with stories about nearly 40 years of running. I may never get around to it, so you're welcome to draw on my working title, which is "Running from The Devil". For yours, maybe "Running Towards The Devil: A Father & Daughter's Redemption By Deadly Genetic Disease" or Into thby Will - Huntington's Disease Support Center
Click on FAQ on the left under "Places to Visit". Then go to "What Causes HD" for a full explanation of the CAG repeat. "C", "A" and "G" are the names for coding sequences in the DNA of the gene that contains the huntingtin protein. The number of times the sequence is repeated determines whether or not the huntingtin protein goes bonkers and caby Will - Huntington's Disease Support Center
Tracy, I like the title. The picture is haunting, knowing that HD is in your family. I assume that's you and your Dad. Willby Will - Huntington's Disease Support Center
Hope and pray for the best, but know that the worst is not the end of life. It's only the beginning of a different journey. Will HD+ Asymptomatic at almost 60.by Will - Huntington's Disease Support Center
JL - clever pun. Tracy - I was going to say, "Jeez! Sounds like AIDS to me.", but resisted the impulse. Willby Will - Huntington's Disease Support Center
Marsha and Steve, You had the patience of Job with this person. Other message boards that I frequent aren't as kind hearted. That kind of posting would have gotten them quickly "zotted". I'm also not a doctor, but the diagnosis of hypochondria seems to fit with K Stevenson. WBby Will - Huntington's Disease Support Center
You guy and gal are the greatest! WBby Will - Huntington's Disease Support Center
JL, Yes. I believe it's the anthocyanins. What impressed me most about blueberries was some research done with the HD mouse, bless his little heart. When fed blueberries from birth at the mouse equivalent of a cup a day, they did not develop HD. WBby Will - Huntington's Disease Support Center
Barb and DB, I had the thought that my vision actually had improved. It hadn't. My contact lens prescription after an exam about 6 months ago stayed the same. There are just two brothers and we're both positive. HD batted 1.000 in my family. I'm almost 60. My brother is 57. He's had moderate symptoms for about 10 years. He was a carpenter and woodworker until he couldn't use tools saby Will - Huntington's Disease Support Center
Barb, I think the laxative effect is from the blueberry concentrate, not the creatine. I've tried things like Metamucil to try to offset it without success. It's a minor problem for me. It's not like I spend all day in the john. Enough detail. :-) You could try real fish oil. Not a problem about the Lighthouse postings. I was intentionally trying to goad someone, so I probably deby Will - Huntington's Disease Support Center
Barb, I added pomegranate about 6 months ago after reading about it on the Brownwood Acres web site, where I get my blueberry concentrate. Here's some information: There are some detailed study links at the bottom. It's good for all sorts of things, so I figured it couldn't hurt. You might try a different fish oil capsule to see if it helps. The TwinLab Mega Twin that I take is a real hby Will - Huntington's Disease Support Center
All, Jerry Lampson was down on Q10, and so is Marsha Miller. They were/are two of the most knowledgeable people in the HD field. My gut feel is that the three most important things to take are fish oil, creatine and blueberry concentrate. I've added other things that are known to be safe. Here's my daily lineup, which I'm convinced is helping keep me symptom free at almost 60. My lowby Will - Huntington's Disease Support Center
Alice, Creatine is generally safe for most folks at a 10 gram dose. However, some people can experience kidney problems. A blood test can check creatine levels to make sure you're not in trouble. Higher doses (40 grams) have caused stomach problems and pain. You would have to take two sachets of the Avicena product to get 10 grams. Theirs is called Neotine, and they say it's "ultraby Will - Huntington's Disease Support Center
Look at paragraph 5 in the first post above. It's the Phase II open label trial at MGH. WBby Will - Huntington's Disease Support Center
I didn't know that. Thanks!!by Will - Huntington's Disease Support Center
I'm trying not to get too excited about this development, but it's hard not to. I was a little reluctant to talk about it since the trial is still going on. Willby Will - Huntington's Disease Support Center
Jennifer, HD-02 is a drug under development by a company named Avicena. It won't be generally available until it's approved. Creatine monohydrate is the same whether in capsule or powder form. I use powder because it's cheaper and easier for me. I mix it with my daily wild blueberry concentrate. The only thing to be careful about is to make sure you buy pure creatine monohydrate. Theby Will - Huntington's Disease Support Center
Kats, 50% less chorea and a significant improvement in balance. He can pass the UHDRS "sobriety walk" test for the first time since he became symptomatic. Remember that this trial is 30 grams of highly refined creatine (HD-02). It's open label and my brother said everyone is showing improvement. That's huge to me. Willby Will - Huntington's Disease Support Center
My brother is in the high dosage study that Steve is referring to. In a word, the results are HUGE. WBby Will - Huntington's Disease Support Center
Brownwood Acres says their concentrate does not require refrigeration during the 2 to 3 days its being shipped. It will keep 6 months in the 'fridge and up to a year in the freezer. I've been getting two quart bottles at a time - about 120 days worth. One goes in the freezer. They also sell capsules. The cost per month is about $15 for concentrate vs. $20 for capsules. I take mine in thby Will - Huntington's Disease Support Center
Amy, I don't know where you're located, but you might want to look into a HD Center of Excellence. Here's the list: Click on Get Help on the top. Willby Will - Huntington's Disease Support Center
DB - I get both concentrates from Brownwood Acres. Theirs is from wild blueberries, which I believe has more powerful anthocyanins than cultivated. I like the concentrates because they're easier. I mix a tablespoon of each with my daily dose of creatine and some water. Sometimes I add a dash of orange juice. The blueberry stuff is pretty tart. Willby Will - Huntington's Disease Support Center