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.

Give Study Participants a Choice

I am a research biologist. I served on the research faculty at the University of California, Santa Cruz from 1984 to 1990, and since 1990 have run my own research laboratory in Hawaii. The purpose of this note is to express my opinion about the ethics of conducting placebo tests of drugs for treating Huntington's Disease. In my opinion the only ethical way to do this is to give all persons tested the option of not being part of the placebo study, i.e. the option to receive the candidate t
Ken Marten, Ph.D.
porpoise@lava.net

Can Historical Data be Reused?

The HD community is coming to a cross roads in research. The Care HD trials of remacemide and CoQ10, involving 340 people with Huntington's Disease, have ended. Enrollment was accomplished in record time and the low drop out rate was unprecedented. Research subjects in this study were randomly assigned to several experimental groups or to a placebo group that was used as a control (comparison) group. Clinical trials with creatine, EPA, and minocycline are about to start. These trials wil
Marsha L. Miller, Ph.D.
mlmphd@erols.com

Which nutritional supplements have been recommended for Phd's?

Deciding for One The issue of supplements is an important one in the HD community. While we are waiting for effective, clinically proven treatments, many people with the HD gene and at risk for HD have decided to take some of the supplements that are currently being clinically tested. These include creatine, EPA, and CoQ10. All three have been shown to delay onset and slow progression in the HD mice. Do we know if these nutritional supplements will help people with HD? Not until clinical t
HDAC Editorial Board
admin@hdac.org

Is it Time to Stop using Placebo Groups in HD Research?

Advances in the lab with the HD mice are leading the way to new clinical trials of potential treatments for people with Huntington's Disease. Is it always necessary to use placebo groups? Read about three different perspectives and tell us what you think. Give Study Participants a Choice, by Dr. Ken Marten Can Historical Data be Reused? by Dr. Lynn Miller A Challenge for HD Researchers, by Dr. Ken Pidcock Are placebos groups a necessary part of HD clinical trials?
Ken Marten, Ph.D., Marsha L. Miller, Ph.D., Ken Pidcock, Ph.D.

He's Not Heavy, He's My Brother.

He had just turned eight in 1977, when his 5 lb. red headed brother was born. They bonded from the first time that "little brother" grasped "big brother's" hand with his tiny fingers. From that point, it was "Big" at "Little's" beck and call. Big Brother was always there with a diaper, a bottle, or a toy. By the time "Little" could walk, "Big" had taught him to throw a football, catch a baseball, and dribble a basketball. "Big" carried "Little" on his hip many miles a day. When I fussed,
Shirley Procell
shirley@SOFTDISK.COM

Gudrun's Caregiving Tips: Recreation for Phds in the late stages

I have learned much from observing how my pHD relaxes as he plays games with me: UNO, Old Maid, dice, dominoes, Gamequest, and computer games. The caregiver, myself also gets a chance to relax, drink a cup of coffee and just enjoy the joy that comes over your loved ones when they actually WIN. I read from a gerontologist that games are very good for the elderly to keep their minds active and socially alive. I am positive that these games are very therapeutic for Bill. He focuses on them

Gudrun
gudrun@eznet.net

Sharing a Disease

When I was 45 I wrote an article for my website about growing old and looking forward to it.* Many of my dearest friends and most memorable acquaintances through life have been elderly. They possess such a wealth of wisdom and depth created by years of experiences. I?m one of the few people I know that embraced growing older. My father, a chronic alcoholic, contributed little to my life other than pain; but he did pass on to me his beautiful, shining, platinum silver hair. Strands of it a
Deborah Baker
mbaker@mail.tds.net

Which foods and food preparation techniques can make swallowing easier?

Recipes We have a recipe section on HDAC which families can use and contribute to. http://www.hdac.org/recipe/recipes.php Answers to this question can be found through these links: HD and diet Published by the Huntington's Disease Association, London. Recipes from Renette Davis Compiled by Renette Davis with assistance from people on subscribed to the LIST-SERV Hunt-Dis. Ideas on Providing Nutrition for People with Huntington's Disease Be sure to take the person who has Huntington's Diseas
HDAC Editorial Board
admin@hdac.org

Why does HD cause eating and swallowing problems and what can I do about it?

My Visit to the Speech Therapist - A discussion of swallowing problems. I want to share what transpired at my first visit with the speech therapist in hopes that it might help others who are experiencing swallowing problems or difficulties with speech. She wanted to focus on my swallowing problems first and offer some recommendations on how to compensate. I told her that sometimes, after I had taken a drink, I would choke and spray it all over. I also told that I find myself actually thin
HDAC Editorial Board
admin@hdac.org

Which medications have been prescribed for various HD symptoms?

The Only Constant is Change There is a saying among HD families about medication, "No one medication works for everyone and no medication works indefinitely." Huntington's Disease symptoms vary among individuals. Individual responses to medication also vary and HD patients, like all patients with damage to the brain, are particularly susceptible to side effects. In addition, because HD is a progressive disorder, a medication that was effective in treating certain symptoms at one point may ce
HDAC Editorial Board
admin@hdac.org