Huntington's Disease Lighthouse Families

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!!!

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.

I was a pretty good student in high school and college, but I had one failure in my senior year of high school. I had to drop out of Introduction to Calculus. Somehow I got my Bachelor's degree and an MBA without it, but that had always bothered me. I recently found a truly amazing site to go back to school and try calculus again.