From a previous post: Here's the rules at the Harvard Brain Bank. Scroll down to Types of Donations. You're correct - in most cases you can donate your brain or organs, but not both. However, you can donate eyes, skin, blood or bone tissue along with your brain. My brain will be going there. I'm pre-registered and it's in my will. Willby Will - Huntington's Disease Support Center
Michael Hayden's address on Saturday was incredible - it was the 9:00 AM research keynote. He got a prolonged standing O. The Friday keynote at 10:30 by Mark Holder on the Science of Happiness was thought provoking and very funny. Both would be worth watching. I saw Matt Ellison from the UK at the conference and sat next to Steve I at the wrapup gala dinner. I just finished a 7.5 hour driveby Will - Huntington's Disease Support Center
Marsha is correct - this can be life threatening. One of the early signs will be low blood sodium, which can be easily measured. Here's a scary, but good description of it. There can be psychological causes, as the article states. Willby Will - Huntington's Disease Support Center
Did you get NSA to tap into his mouse and deliver a 220 volt shock to his index finger when he tries to post? Willby Will - Huntington's Disease Support Center
My running is being affected by ARD (age related deterioration). I might be slow, but my form is poor. Willby Will - Huntington's Disease Support Center
Advances in gene silencing. Willby Will - Huntington's Disease Support Center
Michelle, Here's the rules at the Harvard Brain Bank. Scroll down to Types of Donations. You're correct - in most cases you can donate your brain or organs, but not both. However, you can donate eyes, skin, blood or bone tissue along with your brain. My brain will be going there. I'm pre-registered and it's in my will. What a subject for a beautiful spring day! :-) Willby Will - Huntington's Disease Support Center
Welcome, MarkyS, Vent anytime you want. We understand here. It sounds like your employer is being helpful - as required by the Americans With Disabilities Act. Here's a good summary of that: It will be good for you to work as long as possible, for a number of reasons. Willby Will - Huntington's Disease Support Center
Who else is going? It's June 21 - 23 in Jacksonville, Florida, USA. It's within driving range for me and I'll be arriving sometime Thursday evening before the opening sessions on Friday. I'm looking forward to seeing old friends and making new ones. Willby Will - Huntington's Disease Support Center
Edwina, From Dr. LaVonne's page I get mine from I only take 15 grams a day because of all the other stuff in my regimen. Willby Will - Huntington's Disease Support Center
Scott, This isn't an HD perspective, but one I've learned from distance running. If your electrolytes (sodium in particular) get low, your body will dump water in the form of urine to maintain a proper sodium/fluid balance. Runners often get into trouble by overhydrating and not adding sodium. Your wife might have a chronic imbalance due to her intake of fluids. Maybe adding salty snacks oby Will - Huntington's Disease Support Center
Fred, I'm not familiar with that organiztion. Khan Academy - khanacademy.org has 9 separate courses entitled - "Biology - Heredity and Genetics." I don't know if that's what you're looking for, but Khan has a reputation for quality instruction. Willby Will - Huntington's Disease Support Center
Prayers up for Dave. Technology has come a long way in the past few years with prostheses. He will be fine. Willby Will - Huntington's Disease Support Center
I'll beat Marsha to it. Here's her answer: Willby Will - Huntington's Disease Support Center
If it's not testosterone, it might be low iron. That's a simple test also. Willby Will - Huntington's Disease Support Center
Have you been tested for low T? I was diagnosed a few years ago and AndroGel has made a big difference in my energy levels. There's also a serious disease called ARD - Age Related Deterioration. There's no treatment for that :-) Willby Will - Huntington's Disease Support Center
Laura, That's great news! Our weather should start to improve and it will be more comfortable to walk outside. Keep on truckin'! Willby Will - Huntington's Disease Support Center
I'm still doing well. Supplements and exercise are working for me. I'll be running in a 50 mile race in two weeks. I'm terribly slow at my age, but I'm still at it! Willby Will - Huntington's Disease Support Center
Sorry if we're confusing you. Let me try again. The testing protocol Howard is talking about is complicated. It involves genetic counseling, neurological evaluation and a psychiatric evaluation. However, the only definitive way to tell if you have the HD gene is with a blood test. The results are called CAG counts, which will tell a doctor if you have the genetic mutation. Everyone has twby Will - Huntington's Disease Support Center
Done. All it takes is entering your Zip code. An e-mail to your congresscritter is composed for you. You can edit parts of it or leave the sample as it is. Willby Will - Huntington's Disease Support Center
Nancy, Have you had the blood test? That's the only way to make a positive diagnosis. There are folks who appeared symptomatic and then tested negative. Willby Will - Huntington's Disease Support Center
Marg, That's just great! Congrats to her and her group. Willby Will - Huntington's Disease Support Center
Good for her! Everyone that I've come in contact with during my trials has been great. They're a wonderful way to feel like we're doing something instead of just watching and waiting. Willby Will - Huntington's Disease Support Center
Lisa, That was a very touching post. He has been lucky to have you. Willby Will - Huntington's Disease Support Center
Steve just posted my latest. Click on Community above to read it. It's candid and about as personal as could be, but I'm always comfortable talking to this group. Willby Will - Huntington's Disease Support Center
There is always a written summary of the results (from the testing agency) that gives both CAG counts. Her doctor should have that. Most doctors won't recommend any preventative treatment until a "gold standard" clinical trial has been performed. As Eve said, you can learn more about prevention from this community. My CAG is also 40 and I'm symptom free at age 66. You can readby Will - Huntington's Disease Support Center
Melissa, If they did a Unified HD Rating Scale (UHDRS) test, you can ask for the complete results. That would give you numerical ratings for each of the components. You could have passed some tests and failed just one, which might have led to the doctor's comment. Try to be patient waiting for the blood test. I know it's difficult. Go for long runs. :-) Willby Will - Huntington's Disease Support Center
Stephanie, Welcome back! I remember you. We all "get it" here, as you know. I'm lucky to be still symptom free at age 66. The only time I think about HD is when I'm posting or writing a piece for the HD Blog. I hope you can get there too. Willby Will - Huntington's Disease Support Center
Anne, Welcome. I spent time in Norway some years ago with the US military (Marine Corps). It happened to be the year of Trondheim's 1,000th birthday. That made we Americans feel like newcomers. I fell in love with Norway and Norwegians and hope to return some day. Your English is just fine!! Willby Will - Huntington's Disease Support Center
I agree with CP. All this has a faint odor of agressive marketing. Willby Will - Huntington's Disease Support Center