Blogs

The Many Challenges of HD

There are so many different challenges involved in living with Huntington's Disease. The trick is to try to look at our journey as a quest rather than a curse. This is not an easy thing to do. Being thankful for the symptoms you do not have is a lot easier than accepting the symptoms you do have. But doing both is paramount to surviving living with HD. Having HD is like being a player piano, you are living to the music, but you did not pick the song. Something else is at the control hitting p

Death and Dying

I have made alot of different realizations in these two months following my Mother's death in January. How we all start out as children with a base of family members that become our background environment and the family that we grew up with. We take our family and extended families for granted for many years. It just does not register when you are young that as you grow up you will lose these family members one at a time until there are only a few standing. I will be turning 40 this year and

Progression

Although Huntington's disease progresses slowly, sadly it does progress over time. Everyone who has HD is in a constant state of change between developing new symptoms, and the increased strength of the symptoms already there. People are so very different here. Some have a handful of symptoms that are strong, some have a lot more of the symptoms but they are hardly noticeable now. I have always said that with HD time is on your side as the progression is slow. And compared to cancer and other

Odds and Ends

Having Huntingtons Disease can be incredibly challenging for both the person with HD and the people who surround them. There are so many different HD symptoms that a lot of people are not really aware of. This adds a lot of stress to those relationships on both sides. Take something as simple as a smile. Logic would dictate that if someone is happy then they smile, and if they are unhappy then they do not smile. This is not so with Huntington's Disease. We can feel completely happy on the ins

Organic Denial

I have often puzzled over why some people can see their own symptoms and others can not. I know this is a question many people have asked. How can my loved one with HD not know that they have HD when they have chorea? They think that on some level the person must know, after all denial is part of HD. But it is not in the way you may think. I have recently learned that there are two types of denial with HD. There is the standard psychological denial we are all familar with. That is when you be

Life's Regrets

Time becomes very important to someone with an incurable disease like Huntington's. There is no time to waste when it comes to living life and letting people know how much you care about them because there is no way of knowing when that time will run out. While it is difficult, we can not let yesterday or tommorrow use up too much of today. There is no time to waste on petty things that just do not matter in the big scheme of things. Now is the time to mend fences and work things out with lov

Life

Life can be such a strange thing sometimes. You are cruising along and everything is going great, and then out of nowhere life nails you. Bad things happen to good people all the time, leaving us with the choice to either sink or swim. And while swimming is tiring, sinking is not an option. I know back in 1997 when I found out I was at-risk and then tested positive for HD the Drs told me it was unfortunate that I had not been raised with my HD family, because I would have had people to mir

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? --

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.

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