HD Family Life

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 4

C?ndida C?ndida is at-risk for HD. C?ndida’s home was one of the ones who didn’t have running water or cooling! She offered to let us stay in her home for the remaining 12 days. This was a very humbling experience for me but worked out great to be our base camp. She would go into my bedroom before I retired to bed and fumigate it and then 15 minutes later would sweep up an entire dust pan of bugs. Her bathroom contained two barrels of rain water. When you showered each mor
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 3

After four days in Medell?n we boarded a plane for Barranquilla. I couldn’t wait to see firsthand the Colombian HD Jails. I had been piqued about the reports of abuse in Colombia after meeting Clara Giraldo, Ph.D. at the 2005 HDSA convention. She had just finished an insightful dissertation comparing the different caregiving styles and traditions between the metropolitan ones in Medell?n and the rural ones in JDA. I was appalled when she showed me an unbelievable picture of one of the
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 2

Three additional days were spent going home-to-home to visit families with HD to answer their questions and to give them the first information on HD they had ever received, in Espa?ol of course! The majority of the family members Clara and I visited were all professionals- doctors, lawyers, dentists, and accountants, in their 40’s. Most had never married and chose not to have children who they could pass HD onto. Most were also still living with their parents where everyone contribute
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 1

Preparing to leave Prior to embarking on my first humanitarian mission I went to an immunization specialist who helped me work out which vaccinations I needed to take before I left and which pills I needed to take while in Colombia to avoid getting sick. Prior to my appointment with the immunization specialist I also printed out pages on Colombia and current recommendations from the Centers for Disease Control (CDC) website. My arms were sore for weeks after getting immunized and some of th
Phil Hardt

A Matter of Perception

We have all heard the saying that life is what you make it but many people do not realize that the way they perceive things plays a major role. I read a story once about a man who decided to test his young niece with the half glass of water to see if she was an optimist or a pessimist. The Uncle set the glass in front of her and asked if it was half empty or half full? The girl answered that it would depend on whether you were pouring it (half full) or drinking it (half empty). And with that sa

Sub Cortical Front Dementia in Huntington's Disease

There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer” symptoms in Huntington’s Disease- sub-cortical “frontal” dementia. Unfortunately, since there are far more patients with Alzheimer’s Disease (AD) and the cortical dementia associated with it, virtually all medical professionals recognize it more easily and disappointingly assume that person’s with other neurological diseases
Phil Hardt


There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses. This is much more common for people like me, who live in small isolated places, to have to move to the bigger towns and cities to get the support and understanding that we need. As well as a need to be around other people with HD who are just like us. When you are the only person with HD in your town, it is a very lonely place to be. For myself, it

A Special Gift: The Rose

I Am A Rose %CRY% I'm 51 years old, and five years ago I was diagnosed as being in the early stages of Huntington's Disease. This was not an easy time for me. I was dealing with both the practical loss of not being able to do everything I have always been able to do, but also dealing with emotional grief as well, because I was going through a true grieving experience, grieving the loss of me. It was a scary time as well, feeling that the future was scary. My grief was very real, as it should h

Barb Marshall

Confronting Fate

written April 1998 I had grown up with the knowledge that Huntington’s Disease ran in my Father’s family. It was never a secret. My parents divorced when I was three. I did not see my Father again until I was nineteen. I was raised by my Mother and new Dad. Thousands of miles away from my Father, two older sisters, and the effects of Huntington’s Disease. The word held little meaning in my life until recently. When I was a child I was told HD was something I would neve

A Long Time Ago

We wanted to know. It was 1991. If Karen’s Huntington’s Disease gene linkage test was positive, we would plan our life together accordingly. If the test was negative, we would be relieved and plan our life together as any other twenty-something couple. We met in the mid 1980s and were married in 1989. Karen’s paternal grandmother passed away from Huntington’s Disease (HD) a few weeks after we met. Karen told Tim about her grandmother’s disease at that time a
Tim and Karen
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