Huntington's Disease is a multi-faceted disorder, which involves changes in behaviour and intellect as well as involuntary movements. Although the movement disorder is the most visible aspect of the condition and hence is often regarded as the hallmark of the disease, it is frequently the behavioural changes which are the most incapacitating for HD sufferers and distressing for their families. Alterations in behaviour and intellect are an inevitable part of

HD. However, just as the involuntary movements vary in their severity from one individual to another, so too do the mental changes. For some people, the changes cause few practical problems; whereas for others they have profound consequences for the affected persons interpersonal relationships and place very considerable burden on carers…It is, however, the disease which is at fault… (Julie Snowden, July 1998).

The idea for this book was generated out of my own encounter with Huntington's over the last 18 years. I have watched my children's grandfather die of it (not knowing what IT was), my children's father living with it since his diagnosis in his early 30's(he died aged 45) and now our son living with Juvenile Huntington's - aged 18. My other son is negative and my daughter chooses not to have the test.

The grief/shock/sorrow involved each time another generation was affected, found a deeper level but so did my determination to LIVE with this disease not die with it. As a witness to HD in our family it has humbled me as a person

to see the strength, courage and sheer determination of my own and other families that walk this road. Now I want to tell the story so that others do not feel so isolated in the tremendous kaleidoscope of emotions and learn from each other how to weather some of the storms involved.

This book will be a tool for families, clinicians, nurses and other professionals to provide insight into what it is like to have Huntington's in the family. This is your opportunity to have your say, to share your thoughts, ideas and stories.

Together we can make a difference.

Thank you to all those who have contributed so far. This book has been written on carer's time but it is my sincere hope that it is published by Christmas 2006. All those who have contributed will receive a free copy.