Motor Neurone Disease - A Family Affair - By Dr David Oliver a Sheldon Press Book

Motor Neurone Disease (MND) affects the nerves that control the muscles of the body. A diagnosis of MND can be very frightening, but the good news is that we now know more about the condition than ever before, thanks to advances in care and research. In this book Dr David Oliver, a leading international expert on the treatment of MND, explains what the disease is, what the doctors can do and how to cope with the difficulties.

• Examines possible dietary factors in the cause of the disease
• Gives the latest information on benefits
• Looks at up-to-date thinking on drug trials
• Explores the vital role of the Motor Neurone Disease Association

Motor Neurone Disease - A Family Affair shows how much can be done to help people with this condition live their lives to the full.

'There are no easy answers to living with the challenges posed by motor neurone disease for either the person diagnosed or their family. However, understanding the disease, the difficulties, and the opportunities for practical and emotional support will enable people to face the future.

Dr David Oliver's book comprehensively explores the needs of the whole family as adjustments are made to living with motor neurone disease. His sensitive approach offers a valuable resource for the many people affected by providing information and guidance, and outlining a range of practical options so that life can be lived as fully and independently as possible.'

Tricia Holmes Motor Neurone Disease Association

Motor Neurone Disease - A Family Affair

Contents

1. What Is motor neurone disease?
2. What will the doctor do?
3. What treatment can be given?
4. How can I cope with motor neurone disease?
5. How will my family cope?
6. Facing the future
7. Who will be caring for me?
8. The role of the Motor Neurone Disease Association
9. What other help is available?

Motor Neurone Disease: A Family Affair

Introduction

The aim of this book is that it be an introduction to and source of information on motor neurone disease. There are only about 5000 people with the disease in the United Kingdom. However for every affected person, and their family, the reality of the disease can be very frightening. Often fear is worsened by ignorance and misinformation. By providing answers to some of the questions you may have, I hope that it may be a little easier to cope with the effects of the disease and get on with living.

Although there are many common features of motor neurone disease, every person is different and the problems that may develop can vary greatly. In writing a book about a disease that varies from person to person, I am aware that some people may become worried as they read about problems they do not have themselves and have never really thought about. There are problems that may never affect one individual but can be severe for someone else. Unfortunately, the media can increase the fears experienced by people with the disease as the coverage of motor neurone disease often stresses the more difficult and distressing aspects of the disease. These changes are not universal and will not necessarily happen to everyone who has the disease. I hope that by providing information about motor neurone disease and describing the course of the disease, and what may happen as it develops, that this book will help to allay fears and give you a more balanced view.

Motor neurone disease affects everyone differently, but often you, and your family, feel rather helpless when you first find out that this is the diagnosis. There may be little support or help given at the time and, as it is an uncommon disease, the doctors and nurses may not be very knowledgeable about it. However, there is much that can be done and many ways in which help can be provided. At the present time there is no cure, but the effects of the disease can be lessened, allowing life to continue as normally as possible. The disease will vary in its effect, the time taken for changes to occur and the help needed, but there is always something more that can be done to help — whether this takes the form of drugs, the provision of helping aids or support and comfort.

I have been closely involved in the care of patients with motor neurone disease for over 23 years. It has been a privilege to know and care for them and their families and to share in their experiences of the disease. At the Wisdom Hospice, we care for about 20 patients at home at any one time and a large number of these patients have been cared for at home until their death. I hope that I have been able to help these patients, to help to control their symptoms and cope with their problems. I have also been closely involved in the support of the local branch of the Motor Neurone Disease Association and I am President of the Mid-Kent Branch.

My intention in writing this book has been to create a source of reference that you can dip into and read about the aspects of the disease that are worrying you. Some points and details are repeated in different parts of the book so that all the necessary information on a subject is available to you even if you only read one chapter of the book.

It aims to provide some answers to some of the questions you may wish to ask and, I hope, will show that there is help and support for everyone, however they are affected by motor neurone disease.

About the author - Dr David Oliver trained as a GP and worked at St Christopher's Hospice in London before becoming a Consultant in Palliative Medicine and Medical Director at the Wisdom Hospice in Rochester. He is also an Honorary Senior Lecturer at the Kent Institute of Medicine and Health Sciences at the University of Kent, and is Visiting Professor at the Medical Faculty at the University of Zagreb, in Croatia. He has been closely involved in the care of people with motor neurone disease and has spoken and written widely on their care and the management of symptoms. In 2003 he was awarded the Humanitarian Award from the International Alliance of ALS/MND Associations in recognition of his role in education across the world.