Kelly B's blog

Needing an Advocate

The time will come for each and everyone of us when we will need someone else to do our talking for us. A few months ago there was something that happened that made it clear I had gone from needing a part time advocate to a full time advocate. I relocated again last winter and had to go through the process of getting a new dentist and family doctor. I have run into problems in the past with dentists as they do not understand that I have to be medicated for them to be able to work on me.

The Effects of Huntington's

Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present. The fact that I am very easily confused add a lot

Early Pre-Huntington's Symptoms?

The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others. I


Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud. %TR% My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu

A Matter of Perception

We have all heard the saying that life is what you make it but many people do not realize that the way they perceive things plays a major role. I read a story once about a man who decided to test his young niece with the half glass of water to see if she was an optimist or a pessimist. The Uncle set the glass in front of her and asked if it was half empty or half full? The girl answered that it would depend on whether you were pouring it (half full) or drinking it (half empty). And with that sa


There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses. This is much more common for people like me, who live in small isolated places, to have to move to the bigger towns and cities to get the support and understanding that we need. As well as a need to be around other people with HD who are just like us. When you are the only person with HD in your town, it is a very lonely place to be. For myself, it

Confronting Fate

written April 1998 I had grown up with the knowledge that Huntington’s Disease ran in my Father’s family. It was never a secret. My parents divorced when I was three. I did not see my Father again until I was nineteen. I was raised by my Mother and new Dad. Thousands of miles away from my Father, two older sisters, and the effects of Huntington’s Disease. The word held little meaning in my life until recently. When I was a child I was told HD was something I would neve


There are many things in life that happen over which we have absolutely no control. Huntington's Disease is a very good example of that. None of us would ever choose this path which life has sprung on us. One of the lessons that I have learned in this life time is that a little bit of faith can go a long way. We all have faith in different things and to varing degrees. The opposite of faith is worrying about all the things that have or could go wrong. A certain amount of worry is a healthy t

My Friend, My Hero, My Lorna

This tribute to my best friend Lorna is way overdue. She is one of the kindest, most amazing people I have ever met. To know Lorna is to love Lorna; one just can not help it. I first met Lorna at the BC Lions Camp Squamish at a Huntington's camp years ago. We were instant friends and as we shared our hearts and souls with each other, we discovered we had matching baggage when it came to our past experiences. %TR% The fact Lorna also has HD gave us an amazing inner understanding of living wit


%TR% Huntington's families carry their own unique brand of stress. The inner relationships are complex and often heartbreaking on a scale that no one can truly imagine unless that have personally lived with it. There are a lot of sad family histories out there in the HD community. Within an HD family you also have an extra stress factor in worrying about your kids, parents, siblings and extended family members getting the disease. You tend to watch your family members very closely. There wa

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