Americans with Disabilities Act. Federal law preventing discrimination. It requires employers to make accomodations for disabilities under certain conditions. Willby Will - Huntington's Disease Support Center
That was a great summary, Marsha. I was also excited to see RNAi moving to primate trials. They're going to fix this son of a gun for us. Willby Will - Huntington's Disease Support Center
Apple, The past two years we've combined our Atlanta trip with a trail race that I run very year in the South Carolina/North Carolina mountains. We drove to Atlanta from Raleigh on a Wednesday. Emory has its own conference center/hotel that's very close to the COE. They give us a hospital rate of $83. That's incredible for Atlanta. The PREDICT work runs from about 9 to 3:30 with a shortby Will - Huntington's Disease Support Center
Lori, Here's the current status of RNA Interference, sometimes called Gene Silencing. Willby Will - Huntington's Disease Support Center
Susan, You're not alone. All of us in the on-line community have been where you are, and we're with you now. It won't do any good for me to tell you not to worry, but you shouldn't forget that there's an equal chance that you'll test negative. If the worst case happens and you test positive, you're not going to change overnight. You'll be the same person for some time to come while waitiby Will - Huntington's Disease Support Center
Sheila, You can't tell from the test. Look at family history on both sides and try to eliminate one. That's what I had to do. Willby Will - Huntington's Disease Support Center
Pam, Give yourself a little while to adjust, then come out fighting. The disease can be controlled. I turned 60 last week with no symptoms - CAG 40. Talk to/at us whenever you want. Willby Will - Huntington's Disease Support Center
Susan, I was tested at UNC-Chapel Hill Hospitals. It's not a COE, but is listed on the HDSA site as a testing center. The folks there were knowledgeable about HD and extremely professional. I'm asymptomatic and don't need treatment, but if I did I would drive to a COE. There's no reason you can't test at one location and be treated at another. Willby Will - Huntington's Disease Support Center
Rowan - The reccomeded dose of creatine is 10 grams daily - two rounded teaspoons. That's the human equivalent of the dose that kept the HD mice from developing symptoms. It was also effective in stopping progression in a small human trial, if I recall. There is a larger dose trial going on at Mass General COE - I think either 30 or 40 grams. My brother is in that trial and his symptoms haveby Will - Huntington's Disease Support Center
Barb - Tonic water with quinine is supposed to help leg cramps. I searched on it and the recommended dose is 4-8 ounces when the cramps happen, or an hour before bedtime if you get them at night. I guess that makes my daily gin and tonic the perfect supplement. The quinine prevents cramps, the lime prevents scurvy and the gin prevents bad attitudes. :-) Willby Will - Huntington's Disease Support Center
3X5's will fit in a shirt or jacket pocket. :-) WBby Will - Huntington's Disease Support Center
Thank you both for the kind words. I enjoy writing and it's gratifying to know other people are being helped. Willby Will - Huntington's Disease Support Center
Twiggy, Creatine is generally safe and free of side effects. It's one of the supplements that is helping keep me symptom free at age 60. My CAG is 40. You can read my story at My supplement list is in the article. Will Raleigh, NCby Will - Huntington's Disease Support Center
Louise, I would tell you to be brave, but you already are. Full speed ahead! Damn the torpedoes! May you be negative. Willby Will - Huntington's Disease Support Center
Loved the purse image also. I belong to a couple of running mailing lists (listservs) and there's a predictable question that comes up from some sweet young lady just starting to run. She wants to know how runners carry their hankies. There is a need - the motion of air across your eyes causes your nose to run, especially in winter. Some helpful guy invariably posts a graphic instruction onby Will - Huntington's Disease Support Center
Carrie - you were there! That's the feeling. I hate the treadmill, but will run on it if the weather is life threatening outside. When I do I wear a radio headset. Music can bring on the high for me. If I'm moving well and something like the Stones' "Jumping Jack Flash" or Springsteen's "Born in the USA" plays, I'll go goose bumps and my pace automatically increases. Baby Will - Huntington's Disease Support Center
Barb and Carrie, You're both doing great!! You're already ahead of 95% of the people in the world. Good questions about the runner's high. Let me repeat that I'm not a doctor or a researcher, and there is little hard evidence for the existence of the high. It is thought that exercise releases endorphins into the brain and runners report various levels of feelings of well being. One famousby Will - Huntington's Disease Support Center
Marsha, That's fascinating. Maybe it's the endorphins that supposedly produce the "runners high". The feeling is an elusive one. It doesn't happen every day, but occasionally on a long run I can feel my body and mind relax completely and this feeling of well being and contentment washes over me. I wonder if my brain MRIs in the PREDICT study will show anything. Probably not,by Will - Huntington's Disease Support Center
db, You can overtax your body, although it's unlikely that you'll hurt yourself badly unless you have an underlying medical condition. Sore muscles and joints are a common sign that one tried to do too much too soon. Runners do several things to help prevent injury. When increasing mileage, it's wise to follow the "10% Rule". That means not to increase your weekly mileage more tby Will - Huntington's Disease Support Center
There is a neat web site called You can sign up for a free web account that provides a diet and fitness journal, a calorie and nutrition journal and a weight loss tracker. They sell a program for download to your PC, but the web version is free. Here's a cool automated measuring tool based on Google Maps. You can use it to measure walking or running routes around your neighborhood or in stby Will - Huntington's Disease Support Center
Eric, That was an extremely well written bill draft. One suggestion - include more detail about what the bill is directing the Department of Health and Human Services to do. I don't know what that would be, but I do know that government human services agencies will drag their feet unless they're given specifics. I know - I work for one. Willby Will - Huntington's Disease Support Center
Alice, My thoughts and prayers are with you. Rest assured that your big brother is whole again and still watching over you. WBby Will - Huntington's Disease Support Center
Just sent mine. I mentioned that I passed her about two miles into the Marine Corps Marathon that she ran one year. I wasn't much of an Oprah fan until then. The weather that year was miserable - cold and rainy. She had a security person running with her, but he wasn't holding an umbrella over her. She endured the elements with the rest of us and finished in a decent time - about 4.5 hours iby Will - Huntington's Disease Support Center
Dusty, You can make your next snow angel in her honor. Willby Will - Huntington's Disease Support Center
Rowan - your head is strapped down pretty tight for a brain scan. I would think that would take care of most of the movement problem. Willby Will - Huntington's Disease Support Center
Graham, I can sympathize with Lisa. I do NOT like that MRI machine either. One thing that has helped me is to go in with a folded towel covering my eyes. Once the scan starts I sing songs to myself to put my mind somewhere else. I keep my eyes glued shut the whole time. Opening them really sets uff my claustrophobia. You could also look into sedation. They do that for kids. Willby Will - Huntington's Disease Support Center
Marsha, I'm in my 3rd year of the PREDICT-HD observational study for gene positive, asymptomatic individuals (with gene negative controls). There is a cost to participating - the study pays $100 per trip and it probably costs me twice as much to drive and stay in Atlanta for two days. I consider the difference a contribution to HD research. The day of tests is physically draining due to theby Will - Huntington's Disease Support Center
WOW! Just what the doctor ordered, pardon the pun. Where is this now? Still in committee? Some joint lobbying by the national advocacy groups ought to get it moving. This should be a no-brainer for Congress. WBby Will - Huntington's Disease Support Center
Melissa, I'm from Raleigh and was tested at UNC Hospitals in Chapel Hill. The total cost was around $1,000.00 and my health insurance paid for it. I felt the genetic counseling was valuable, particularly when they had to deliver a positive result. WBby Will - Huntington's Disease Support Center