It’s fine to give blood when you’ve tested positive for the HD gene. I was a regular donor when I found out I had it and one of the first things I did was to check to see if I could still give. At the time I was a blood drive sponsor for a North Carolina agency and had access to the full Red Cross eligibility manual. It said, “… donors with the Huntington’s Disease gene are acceptable as long as any involuntary movements will not affect the donation process”.
La misión de HDlighthouse es presentar y explicar los últimos descubrimientos de la ciencia para que las familias que lidian con la EH puedan volverse proactivas en su tratamiento, puedan tener esperanza respecto del futuro y tomar buenas decisiones en el presente.
I’ve written before about finding excuses not to take proactive steps to fight the Huntington’s Disease demons. I’ll try to never quit that battle. However, there are some times when you have to stop doing something, like driving, to insure your safety and that of everyone else on the road. That’s a very difficult thing to do, since it means losing your freedom and admitting that the disease has gotten the better of you
Perspective is the ultimate way to be able to put the things that happen in life into proper focus. How we view things has everything to do with how big a deal we make of some things. There are always three choices in any given situation: Give up, give in or give it all you've got. Time is going extremely fast and in just two days from now, tomorrow will already be yesterday.
I had been a Home Support worker for years before I was diagnosed with HD. This would prove to be a huge benefit to me and helped me to put my HD in perspective.
Last Saturday morning I took Sassy, our rescued 13 year old Shih Tzu, on her regular morning stroll in our backyard. We live on a heavily wooded lot with pine trees reaching up 90 to 100 feet. We were just about at the base of one when Sassy jumped backwards. I looked down and there was something on the ground covered in grayish down.
This past Saturday I ran my annual 50 mile race at the Umstead 100 Mile Endurance Run in my hometown of Raleigh, NC. I have finished the 100 five times and the optional 50 miler 9 times, including this year. I’m also on the Race Committee and handle registration and awards.
I know when we fell in love. She was dating my roommate in prep school. Yes, I went to a snotty boy’s boarding school in New England. I wasn’t from a wealthy family, but had a working scholarship. I worked in the kitchen every day to earn my way through. She was from an old family and went to a snotty private girl’s school. I’m not sure how it happened – it just did. I was kind of a jock – co-captain of the hockey team and a starting attackman on the lacrosse team. Maybe that attracted her. She was smart and physically attractive.
We all know that exercise is beneficial for everyone. It’s particularly important for people with, or at-risk for HD. A New Year’s resolution made and kept will make you look and feel better. Do you have to go to a gym 6 days a week and sweat bullets to get in shape? NO!!! Do you have to run marathons? NO!!! Do you have to spend a fortune on fancy equipment? NO!!!
A team of researchers from Barcelona, Spain, led by Dr. Mark Isalan and Dr. Mireia Garraga-Canut, have developed artificial zinc finger protein strands which bind the longer CAG repeat stretches of the HD protein while leaving the normal huntingtin protein gene, neighboring genes, and other genes with CAG repeat stretches unaffected. They achieved a 60 percent reduction of the HD protein in a mouse model and improved symptoms.
I chose my supplements based on research and cost. I couldn’t afford to take everything I would like to, so I chose those with the best potential at affordable amounts. That’s why I chose Creatine alone instead of a combination of it and Coenzyme Q10. There is not a lot of hard research on neuroprotection, so I also chose under the philosophy “Can’t Hurt, Might Help”.
n January, 2012 I was asked to participate in this study being conducted by the Clinical Research Unit (CRU) of the Wake Forest University Baptist Medical Center in Winston-Salem, NC. This was to be a short, but intense study evaluating the safety of a promising new drug for the treatment of Huntington’s Disease.