Living Positive

Still the Same

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


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--

Insights into Huntington's

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

HD and Aquatics for Movement Disorders

If you did something yesterday, you can do it today, and you probably can do it tomorrow. I have been too busy to have HD. Unfortunately I got it anyway, so here I am a full fledged PHD at the beginning of the next century by which time we felt there would be a cure. My experiences with various problematic children has been long term associations with speech pathologists, audiologists, auditory-verbal therapists, neurologists, adaptive technologists, special ed teachers, and psychologists, o
Patricia Ann Morgan Candlish BA MLS

Life After Testing

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

Reasons for Hope - 2004

I?m feeling very hopeful about the future of treatments and a cure for HD. With all the changes since I last wrote about Hope, it seems like a good time to write a new article about reasons for hope. I?m excited about: new advancements in RNA interference therapy the convergence between HD and cancer research new basic knowledge about the Huntington?s Disease protein To prepare, I turned to the article I wrote in 2000. I had some trepidation thinking that time might have made it o
Marsha Miller, Ph.D.

My experiences with Huntington's Disease

Growing up with a father and an aunt with Huntingtons desease, I have always known that there was a chance that I too would get this illness. Knowing this, I had always tried to prepare myself just in case I ever had to hear those words, "You have Huntington's, I'm sorry." Shortly before my sister passed away, also a victim of HD, I began to notice the tell-tale signs of HD, like how I kept dropping things more frequently. I also began moving without wanting to, and I had become very moody
John Charlton

The HD No One Sees

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

It?s a Wonderfully Different Life

It is Thanksgiving evening and I find myself uncomfortably full and lounging in my home. My family, including my wife of 21 years and our 2 children, are scattered around the house in various stages of tryptophan comas (that drug that turkeys contain), either sound asleep or fast on their way there. I am relaxed, but not tired. My mind is reeling with so many thoughts, so many things to be thankful for, that I am too overwhelmed to sleep. You see, my life to-date has been full of harsh chall
Carlos A. Urrutia
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