Kelly B's blog

Living Large

This June makes 4 years that I have been writing this journal/column of my HD journey. It does not seem possible that so much time has passed since I first put pen to paper for Kelly's Korner and set out to try to explain what it is like to live with HD. I started out writing to help other people understand but in the process I ended up gaining a vast knowledge about myself. It was important to me that people understand that HD is not an illness or a sickness but more a matter of learning to

Talking to Children

Talking to children about Huntington's Disease is a very difficult thing to do. Trying to put Huntington's into words that adults can understand is hard enough but when you have to explain it to children it is heartbreaking because the stakes are so much higher. While I do not have children I am the proud Aunt of 17 children. Three nephews who are blood related but do not live near me. Seven who are my best friends children who also live far away from me. And then there are my two best frien

Asking for Help

Life is a struggle for many people. That is the tie that binds all of us together because we are all up against something. We all doubt our sanity at times. But the good news is that it is a fact that only sane people doubt their sanity, only insane people are certain of theirs. Asking for help is difficult for many of us. There is something in asking for help that makes us feel like we are failures for having to do so. We choose to continue to struggle rather than hurt our pride by reaching

Miracles

It seems only fitting with Christmas only a couple of weeks away that I write this piece on miracles. Miracles come in all shapes and sizes, from the smaller ones that happen unnoticed all around us every day to the most profound ones that have a ripple-effect in our lives. The expected is what keeps us going. The unexpected is what changes our lives. Some people believe that the events that happen in our lives are pre-ordained. Others believe that things happen by chance and coincidence and

Fear of Being a Burden

Fear of the future is of huge concern to people who have HD and their caregivers and family members and friends. There is no crystal ball to see what the future holds for any of us whose lives are affected by Huntington's Disease. I have heard a fair amount of horror stories from friends of mine who also have HD. There are so many different sides to each and every facet of HD. Some mates leave and some mates stay for the long haul. I think it comes down to some people being the caregiver typ

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

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