If you are reading this, you have probably been affected by Huntington Disease or know someone who is affected by this terrible disease. For many, Huntington's is like a mugger in the night that stalks your every step. At every turn, every corner your mind sees the shadow of Huntington's following, waiting to strike if it hasn't already. For some twenty five percent of us who are HD positive, there is no family history and no one in the shadows to be concerned with. No symptoms to be watching for that may indicate the need to test.
Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.
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.
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.
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.
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.
On December 6, 2012, Michael J. Astrue, Commissioner of the Social Security Administration (SSA), will hold a Compassionate Allowances event in the Hart Senate Office Building, Washington, DC, from 10:00-11:30 a.m.
Researchers at Northwestern University are conducting a study to create a new self-report questionnaire to better address these issues. An important first step is to speak with people diagnosed with Huntington’s disease and caregivers to learn more about how one’s quality of life is affected.
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.