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

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


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

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