Community

Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.

We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.

Exercise Your Brain - Go Back to School

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.

I Won a Race - Sort of

Those who have read my story may recall that I'm one of 4 people who have finished all the Marine Corps Marathons in Washington, DC, starting in 1976. I'm the youngster of the group at 66. The others are 70, 72 and 74. The 37th race was last Sunday and we all finished, but not in our usual order. Traditionally, the oldest guy, who has fast genes, finished well ahead of the rest of us. I was usually second behind him. The race has nicknamed us the Groundpounders, a play on the slang for a Marine infantryman.

False Memories

Delusions can be a big part of Huntingtons with some people.  I have a sister who is completely delusional.  It really keeps us on our toes to try to keep up with all the different ideas she comes up with.  Trying to reason all the time with someone who has an altered grasp of reality and a 5 second memory span is a full time dance/job.  She keeps coming up with these brilliant ideas but because she does not see her disability at all she feels she is capable of everything and everything.

Needing an Advocate

The time will come for each and everyone of us when we will need someone else to do our talking for us. A few months ago there was something that happened that made it clear I had gone from needing a part time advocate to a full time advocate. I relocated again last winter and had to go through the process of getting a new dentist and family doctor. I have run into problems in the past with dentists as they do not understand that I have to be medicated for them to be able to work on me.

Allison's Clinical Trial

Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.

Howard