Kelly B's blog

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 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.

Finding Support

Finding support for HD can sometimes be a daunting task, especially if you are new to the HD world and do not know the different things available. Everyone involved in the HD family needs that support, not just the Phd. Family and friends are our best bet for support. These are the people who know all your faults but love you anyways. Opening those lines of communication is vital to everyone involved. Talk about what is going on and how everyone feels about it. Some HD families will not di


There are many different promises made around Huntington's Disease. The need to make sure all your bases are covered can be a driving force. There are so many things to deal with and it is impossible to predict in advance all the possible scenarios of the future. I have my living will signed and ready, a power of attorney picked but not legalized, yet. At 37 years old I should not have to be thinking about these things, but the paper work is a necessary evil, unfortunately. For when the day


The emotions involved in HD are overwhelming at times. It is like our sensitivity meter is doing overtime. Everything seems much bigger than it actually is. Having HD means living with a roller coaster ride of emotions every day. It starts with irritation, irritation becomes anger, and then anger becomes rage on rare occasions. So nipping irritation in the the bud is sometimes a way to steer clear of both the anger and extreme anger (rage). In one of the HD videos I was lent by the HSC, it

Body Memories

One of the many challenges of Huntingtons Disease, is the loss of body memories. Its like our bodies have forgotten how to do the hundred different things that it used to do automatically. Now even the simplest things require a great amount of thought and concentration. Someone once did an experiment between a person with HD and another person with Alzheimer's. They had both of them spin a record manually with their fingers. The next day they asked the person with Alzheimers if they remember


Feelings of hopelessness, helplessness, and extreme depression are common in most people/families effected by HD. When your world seems to be out of control and you are overwhelmed with sadness it is easy to fall into that deep dark hole and just stay there. However, the longer you stay down, the harder the climb out will be. When you are depressed for too long you lose the ability to make the happy chemicals you need to balance your brain. I was offered antidepressants by Doctors for years

Anxiety and Panic Attacks, Part Two

Being prone to anxiety and panic attacks is kind of like carrying around a loaded gun; you just never know when it is going to go off on its own. I find it controls my life more than any of my other symptoms, and yet it is invisible to those around me. I try to avoid the things that I know can set me off, but that is not always possible or practical. Sometimes you have no choice but to force yourself to step outside your comfort zone. And that's where the fear lies. I am not afraid of othe

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