Barb, thank you so much for sharing your blog site. i enjoyed it so much. your work on the message boards, the chat room and on your blog is so warm and helpful. Thank you CPby Concerned partner - Huntington's Disease Support Center
The real question is about where else your HD+ information resides. Lots of insurance companies want your family doctor or other specialists to complete forms. That is what happened to us. We didn't say anything about my mother-in-law's HD+ status, and my husband wasn't tested yet. The insurance company sent additional medical forms to our family doctor who knew about the HD history, then my hby Concerned partner - Huntington's Disease Support Center
Marsha, I'd be really interested to know what is considered "mild" for the purposes of this study as well. It sounds really exciting. CPby Concerned partner - Huntington's Disease Support Center
OPRA has an email site as well where you can request topics for a show. Perhpas she would consider having Trey Gray and the band on the show. Email suggestions for shows at: CPby Concerned partner - Huntington's Disease Support Center
PLease take the time to wait on the marriage until you know what his medical future holds. You really can't make a decision on moving to marriage without the health question answered. Be sure that you are moving in the direction that you want your future to take. HD is a major life detour and be sure that You love this person so much that you are prepared to take the different road. Cby Concerned partner - Huntington's Disease Support Center
I also am interested in the history of HD. My mother-in-law had the disease. She immigrated from the northern area where Germany and Poland meet. Because of the terrible things that happened during the war, we know nothing of her father who she probably got it from. Cby Concerned partner - Huntington's Disease Support Center
There is a background research paper on the internet from a well respected Dr in Vancouver. You can download it in Adobe. You will need some statistical knowledge to read the charts though. Try googling "Conditional Probability Tables for Determining the Age-Specific Likelihood of Onset of Huntington Disease" Cby Concerned partner - Huntington's Disease Support Center
Will, That is an excellent suggestion. I am also wondering what kind of work the daughter does. Perhaps contact through an employer might work. If for example she works as a clerk in a drug store, perhaps an email could go out to all stores. Cby Concerned partner - Huntington's Disease Support Center
I have been reading and reading now, but I don't understand what are the symptoms that need to be present for when a person crosses over from being considered pre-symptomatic and symptomatic? As a spouse I see the slight differences in personality, finger tremours, irritability, but they are slight changes that another person wouldn't see. Has anybody had an MRI and if so what informationby Concerned partner - Huntington's Disease Support Center
Edwina, I will send you the journal article tomorrow. I am also interested in Traditional Chinese Medicine. Ayurvedic medicine is Traditional East Indian medicine. These other cultures sometimes have things that are perhaps helpful but they don't always know the science behind them. We are only catching up with things they have known for a long time. C.by Concerned partner - Huntington's Disease Support Center
Ohio & remig, Thanks so much for the information on acetyl-l-carnitine. I have been reading about it this afternoon and am quite impressed. It seems that it could be both neuro-regenerative and neuro-protective. I am going to talk to my pharmacist about sourcing it. One page I read claimed there were only two (2) sources of pharmacuetic grade acetyl-l-carnitine in the world. It cautioneby Concerned partner - Huntington's Disease Support Center
Barb, I read a previous post from you when you shared the good news that your neurologist recorded an improvement over the previous year. Wonderful! So that begs the question, "What are you taking for drugs, supplements, and diet modifications?" We have the first visit with a local neurologist in two weeks and I want to be very prepared. I have been warned that I will know moby Concerned partner - Huntington's Disease Support Center
Barb & Edwina, I have been buying products by Quest, the multi-vitamin is Premium Multi-Cap Iron Free. Quest is manufactured in Brampton and my pharmacist friend, after touring the factory, was very pleased with the products. I bought the OMEGA 3 for hubby as well. Go to for more information on the multi-vit. There are a number of retailers online if your pharmacy doesn't carryby Concerned partner - Huntington's Disease Support Center
I found a reference someplace that people with neurological disease should be on a low iron diet. So I found a multi-vitamin that is without iron. Carolby Concerned partner - Huntington's Disease Support Center
Question to the good people at HD Lighthouse, In my research I came across in the British Journal of Pharmacology (2005) 144, 961-971, an article titled, "Neuritic regeneration and synaptic reconstrectuion induced by withanolide A" by authors Tomoharu Kuboyama, Chihiro Tohda & Katsuko Komatsu. In their discussion section they write, "we demonstrsted tht WL-A could facby Concerned partner - Huntington's Disease Support Center
I thought this was very good news! Since money makes the world go around, I thought that the potential of profits would get the research and drug trials moving more quickly. Being a cancer survivor and seeing how much money is in research there, and my partner just recently being told he is HD gene positive, I am shocked at the lack of money being put into research, drug treatments, etc for HDby Concerned partner - Huntington's Disease Support Center
Dusty, This one I may be able to help a bit with. Go to a good pharmacy and ask for Biotene toothpaste, mouthwash and artifical saliva. With a very soft tooth brush they are helpful. I used these products for the year I was on chemo because that dries out the mouth just aweful. My favourite pharmacist mixed up a bottle of artificial saliva for me -- even flavoured it Pina Colada. He put soby Concerned partner - Huntington's Disease Support Center
The big challenge I am facing with diet and supplements is that my hubby travels weekly out of the country (to the USA) for work. So he is crossing the border twice a week. Although I can keep a well stocked fridge and freezer, making sure he has the right stuff with him all the time is more of a logistical issue. I think I am going to try dried fruit and concentrate in a Nalgene bottle. I amby Concerned partner - Huntington's Disease Support Center
Will, Thanks for the tip on Brownswood, I phoned them and placed an order for Blueberry concentrate. The woman was very nice. Why do you take pomegranate juice? What is in it that you feel is beneficial? And the same question about the choline. Is choline lethicine? I was also thinking of Concord Grape Juice concentrate if I can't find the Black Current concentrate. Can't thank you enby Concerned partner - Huntington's Disease Support Center
I just found a message thread from last summer on vitamins, a great list. Makes me wish I knew so much more about nutrition, minerals and vitamins What are theanine, magnesium and potassium suppose to be doing for HD brains? I know Will also takes Choline (Lethicin), how does that work? C.by Concerned partner - Huntington's Disease Support Center
Barb, How do I get into the chat? I am probably too late for today but next time? Cby Concerned partner - Huntington's Disease Support Center
Will, Again, many thanks for your quick response. I am going to call brownacres to see if they will ship to Canada. I have been trying to track down a supplier for concentrate and in the meantime have been trying to get him to eat 1 cup/day of blueberries. I did find some info on Anthrocyanins on the HD lighhouse and also in an Extension Paper out of the University of Kentucky. Other fby Concerned partner - Huntington's Disease Support Center
To all the good people at HD Lighthouse, I came across an article in a scientific journal reporting on a rat study for Panax Ginseng and Huntington. It is in Journal of Neuropharmacology 48 (2005) 743-756, Kim, Jong-Hoon, et al., Protective effects of ginseng saponins on 3-nitropronic acid-induced striatal degeneration in rats. Could you give me your opinion on their findings? Is Panax Gby Concerned partner - Huntington's Disease Support Center
I have more questions to ask of those who know so much more than I. My husband has started creatine (4 weeks), OMEGA 3 EPA (3 weeks), Trehalose (1 week), and I finally convinced him to add Vit E in the last few days. Over the holidays I really notice tremours in his right hand and involuntary movements of his right arm. So my question is really about the supplements. Do supplementsby Concerned partner - Huntington's Disease Support Center
Merry Christmas to everyone! Thank you so much for welcoming us so warmly to the group when we were at our moments of greatest need. This Christmas I am especially thankful for all of those who support us and for the researchers and doctors who will one day find a treatment and cure. have a wonderful holiday! Carolby Concerned partner - Huntington's Disease Support Center
I googled 'Scott Midyett' and was so inspired by what he had managed to do. I pray that his good health has continued. Thank you to everybody who is helping me with getting onto the right track. Some of my shock is subsiding and now it is time to get down to the task at hand -- keeping my hubby healthy as long as possible. I have to confess that I am an information junky and working acrossby Concerned partner - Huntington's Disease Support Center
Will, Again many thanks for your help. I am confused about the EPA and DHA. Some place I read that the high DHA was the most important factor and other places it is the EPA. Can you clarify this for me. Am I looking for 2,000 mg of EPA or DHA? For now I have also got him eating 1/4 cup of walnuts and 1/2 tin of Clover Leaf Wild Pacific Salmon (packaged in Alaska -- not China) everydayby Concerned partner - Huntington's Disease Support Center
Well, my husband started creatine a week ago at 20 grms under the supervision of our family GP. Now as of last night he says he has no complaints. Out GP says he can continue to add supplements every two weeks so that if there are problems we will know the culprit. He has ordered bi-weekly kidney and liver function blood tests. The GP's other comment was to go first with the supplements thatby Concerned partner - Huntington's Disease Support Center