HD Family Life

Testing Positive for Huntington's Disease

Testing positive for Huntington's Disease is one of the most difficult life challenges that one can face. I found it to be the equivalent of Alice through the Looking Glass. Everything is upside down and backwards, nothing is normal. It is like your entire world as you have known it to be has changed. There is life before Huntington's and life after finding out you have Huntington's. While things will never be the same as they were before testing positive -- and really, how could they be? --

Video Documentary: Pierre's Story

Rob Hopping unveils the story of Pierre Loranger who shares his experiences and his life living with Huntington's Disease. Rob offers us the first part of a three part series. Rob became aware of Huntington's Disease when a friend of his tested positive for the gene. After spending time with HD patients and their families, he realized that more awareness and resources are needed to fight the disease. Rob is a documentary filmmaker living in Seattle Washington. Click on the following l
Rob Hopping

Stark White Walls

The cool air was crisp and light on this particular spring day. I was in my second grade classroom listening to Mrs. Bennett give us our daily assignment when the bell finally rang and class was out. I met my older brother on my way out of the oversized building, and we slowly walked up the small hill to where we knew our mom would be waiting. Unfortunately, this day would turn out to be a little different than we expected. My brother and I waited on top of that lonely hill for what seemed l
Lisa Reid

Public Drunkeness

It is such a shame that people living with the early stages of Huntington's are so often mistaken for people who have been drinking. Although it is understandable with the HD symptoms including slurred speech, bad balance and slowed thought/response - understanding that does not make the accusations any less hurtful when they happen. Being wrongfully accused of anything hurts the spirit, but being a non-drinker and being accused of being impaired by alcohol is a major blow to the self esteem.

Finding Support

Finding support for HD can sometimes be a daunting task, especially if you are new to the HD world and do not know the different things available. Everyone involved in the HD family needs that support, not just the Phd. Family and friends are our best bet for support. These are the people who know all your faults but love you anyways. Opening those lines of communication is vital to everyone involved. Talk about what is going on and how everyone feels about it. Some HD families will not di


There are many different promises made around Huntington's Disease. The need to make sure all your bases are covered can be a driving force. There are so many things to deal with and it is impossible to predict in advance all the possible scenarios of the future. I have my living will signed and ready, a power of attorney picked but not legalized, yet. At 37 years old I should not have to be thinking about these things, but the paper work is a necessary evil, unfortunately. For when the day

pHD Shot by Deputies During Effort to Get Mental Health Assistance

Dear Friends and Family of Joseph Marcus Barron, As you may or may not have heard, on Thursday, July 7, 2005, at approximately 1:30 a.m., Joseph became a shooting victim and was transported to Brooke Army Medical Center in a near death state. When I arrived at BAMC, a hospital chaplain, who was paged along with the trauma team to receive Joseph in the ER, greeted me. He explained to me that Joseph had suffered major bone and tissue damage to both legs, at the knees, and that in the right leg,
Robert Barron


The emotions involved in HD are overwhelming at times. It is like our sensitivity meter is doing overtime. Everything seems much bigger than it actually is. Having HD means living with a roller coaster ride of emotions every day. It starts with irritation, irritation becomes anger, and then anger becomes rage on rare occasions. So nipping irritation in the the bud is sometimes a way to steer clear of both the anger and extreme anger (rage). In one of the HD videos I was lent by the HSC, it

Coastin' for HD

Once again Marie Nemec and Charlotte Heicks have embarked on a biking trip to raise funds and awareness for Huntington's Disease. They arrived on Friday evening, June 3, at the home of my mother, Vivian Miller, in Wilmington, Delaware. We had a wonderful time welcoming these special ladies. My daughter Alison brought a popular radio personality from WILM to interview them and then we all sat down to dinner, reporter included. It was great to be able to chat and catch up on everyone's news.

Body Memories

One of the many challenges of Huntingtons Disease, is the loss of body memories. Its like our bodies have forgotten how to do the hundred different things that it used to do automatically. Now even the simplest things require a great amount of thought and concentration. Someone once did an experiment between a person with HD and another person with Alzheimer's. They had both of them spin a record manually with their fingers. The next day they asked the person with Alzheimers if they remember

Syndicate content