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Huntington's – the truth

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When Peter Smith met Jan, she had already been diagnosed with Huntington's Disease. They married in spite of this. During the years that followed, Peter was Jan's carer. He quickly became aware of how little written information was available to help the lay person deal with this devastating genetic disease.

Huntington's – the truth

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Author: Peter Smith
ISBN: 978-1-876231-21-7
148x207mm, 118 pages, Paperback

When Peter Smith met Jan, she had already been diagnosed with Huntington's Disease. They married in spite of this. During the years that followed, Peter was Jan's carer. He quickly became aware of how little written information was available to help the lay person deal with this devastating genetic disease.

This book is the culmination of those years of experience in caring for a Huntington's sufferer. It contains non-technical information on the disease, practical advice and some very personal accounts of the impact of the disease on families. It will be of assistance to sufferers, their families and friends, carers, medical personnel and service providers.

The author's reasons for writing this book
My intention is to help fill the gap in material on the disease for the benefit of sufferers and their families, carers and other associated health professionals. The overall aim is to provide a variety of personal accounts and information on the genetic basis of the disease, the expected course it can take and the resources that are available to help people through each stage.

Acceptance is the hardest to face the fact that the long-time dream of most couples to graciously grow old together and watch the grandchildren grow up will not become a reality. Life has taken a major turn, and your own mortality has never been more evident. In fact, someone has told you that there will be an end to your life.

Huntington's, in most cases, progresses over a period of between fifteen and twenty-five years. Why then, do so many people who have just been diagnosed begin to wind down their lives and wait for the inevitable to happen? It always saddens me to hear of those affected who give up all hope of a normal existence. The reason for this seclusion is simple: sufferers are often not told when diagnosed that they can lead a normal and productive life for many years, before Huntington's takes its toll.

Putting the quality back into life
All sufferers affected by Huntington's know what lies ahead. Of course, the price they pay for this knowledge is the loss of years of life, as well as varying amounts of sickness for the time remaining. Yet, all knowledge provides a kind of freedom – in this case it is the freedom we can give ourselves to plan that new life we've always dreamed of by maximising the time left to us.

During the course of my late wife Jan's illness, we travelled through many parts of New South Wales and even to the USA. Most of these trips would never have occurred were it not that she was ill – her acceptance of the disease also helped us achieve many of our other goals. This attitude was an inspiration for many people.

It is my aim to help you understand not only the clinical facts about Huntington's Disease, but to inspire you to see that each and every day can still be special. I relate some of the real life situations of sufferers and carers who are going through what you are may already experience yourself. It can be uplifting and refreshing to know that you are not alone.

Facing a future with the knowledge of what lies ahead can instill a new, even positive approach to life. I hope this book will not only give you a necessary understanding of Huntington's, but introduce you to a whole new way of living that will assist you in handling the complex but wondrous future that lays ahead.

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