Living Positive

Allison's Clinical Trial

Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.

Howard

The Effects of Huntington's

Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present. The fact that I am very easily confused add a lot

Early Pre-Huntington's Symptoms?

The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others. I

Family

Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud. %TR% My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu

Using Your Words

Learning how to use your words can take a lifetime to learn. Learning to verbalize what we want or need from those around us can be a scary thing. Some people just are not good at expressing themselves. It is an art that takes a lot of practice, and it all begins with the realization that the people around us are NOT mind readers. No one but you knows what is inside your head at any given time. Peoples needs often go unmet for the sake of just expressing them. When people understand exactly
Kelly B.

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

Relocating

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

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