Finding out you have Huntingtons Disease is one of the hardest things many people will deal with in their lifetime. I know I felt like a totally different person after I found out I had HD, back in 1997. The more I learned about it, the scarier the future looked. I read the list of symptoms and at first thought I was automatically destined to get all of them. (I did not realize then that every one with HD has their own mix of symptoms.) The feeling I felt the most right after testing was wort
Kelly B's blog
Some people say that denial is the minds way of putting off until tomorrow what it hurts too much to admit today. I believe that. It is like a built in self-defence mechanism that kicks in when you can not deal with something emotionally. Everyone deals with things in their own way and at a different rate of speed. There is no guidebook to tell us how long it will take us to come to terms with something, or what is an appropriate form of grieveing. But the official five stages of grief are--
After years of wondering just what my "problem" was, I do admit that I am relieved that my problem finally has a name. I have always been very different from others and had a really hard time fitting in with those people around me. And I knew many years ago that there was something wrong with me because of my very odd feelings and behaviors. My "quirks" if you will. Imagine my surprise to see each one of my unexplained quirks listed under the emotional and cognitive symptoms of Huntington's w
It is a toss up to say which is worse, growing up knowing you could inherit the disease that has ravaged family members all around you. Or finding out right out of the blue and getting the shock of your life, like I did. On the one hand I was saved the years of stress and worrying about being at risk, but on the other hand it is one hell of a hit, from nowhere, all at once. I had no time to get use to the idea of being at-risk before I was tested for it. I knew Huntingtons ran in my biolo
I am in the early stages and you would have to look hard to see the Huntington?s Disease. My HD is on the inside working its way out. I have often wondered which is worse. Having chorea and an obvious disability or looking "normal" but having many invisible symptoms? I am not alone. There are others in the early stages who are living with the "invisible symptoms" of HD every single day, those who can not show or tell those around them all the different changes they can feel on the inside
Kelly is a regular visitor to Camp Squamish which is for people who have HD. Here she tells about her marvelous camping experiences.