Welcome to the community section of 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.

Problems with Noise

Everywhere I go the world is filled with a lot of noise. Restaurants and hotels seem to be the worst for playing music way too loud. The list of places I had to leave increased by two last week when I was on a week long trip and eating out a lot. It physically hurts my head and it's like being stuck on an all static channel on the TV. It becomes painful if I try and tough it out - it is like my ears are amplifying every thing by ten and the most simplest of noises do become an issue for people with HD.

Life is a Gift

I turned 48 on my last birthday. Another year and a half and I will be 50. Time sure is flying.

I will be going to the clinic in July and will be interested to hear of the new effective treatments they have now for slowing the HD down. I am also hoping I will get on the list for the gene silencing treatments. It has been 3 or 4 years since I have been there so it is time.

Iwo Story

Japan allows only one one day tour of Iwo Jima each year. There are still 11,000 soldiers entombed there, so it’s a sacred place to them. The tours are run for about 150 people by Military Historical Tours of Woodbridge, Virginia. They are run in conjunction with the Iwo Jima Association of America. Japan has a corresponding organization and works with the Americans on the annual commemoration ceremony. All tour participants have to join the American Association.


One of the toughest aspect of Huntington's and some other neurological conditions is dealing with dementia on a daily basis. My sister had dementia for many years and I spent many hours answering all the same questions and trying to explain things only for her to forget and get confused all over again. The dementia symptom I noticed the most was how easily she was confused by things. She started asking a lot of child-like questions as her ability to reason things out was completely gone. She lost the ability for small talk and for initiating conversations.

Being Mean

There are a lot of people with Huntington's who can have a problem with being mean to their loved ones.  Sometimes HD can completely change a person’s personality and other times it amplifies what is already there.  My father was a very kind and gentle man and as his HD progressed he became kinder and gentler.  In his case it amplified his existing personality rather than changing it.

Life Goes On

It has now been over five months since my sister Shannon passed away of Huntington’s and all around me life goes on.  After years of being beside her through her journey and putting all my energy into trying to always be a good sister to her especially the last three years, there is a strange and unfamiliar inner peace inside me which I have not felt in many years.  My other sister and I did everything in our power to make her life as happy and comfortable as possible.  We showed her all the love we possibly could.

To My Newest HD Angel

After years of my watching her progression from a front row seat, my oldest sister finally passed away almost two months ago now. I have been dragging my feet at writing this final chapter of her life as I knew it was going to make me sad all over again and stir up all the grief I still feel in my heart for her.

In the five weeks before her death she had a stroke and as her sister, seeing her in diapers and then having to be fed minced food as she had lost the ability to chew with the stroke, I was saddened at the further hit to her pride.

HD and Cancer

Splitting cancer cells

I recently had my annual full body scan by my dermatologist for skin cancer.  When he entered the examining room I threw my hands up and said, “I plead guilty to running shirtless in the summer without sunscreen!” It was obvious from my perpetual upper body tan, which fades a little in winter.