AT YOUR FINGERTIPS MOTOR NEURONE DISEASE ‘This book will be a very useful tool for anyone affected by MND’ Heidi Macleod, Motor Neurone Disease Association Dr Stuart Neilson and Dr Frank Clifford Rose Comments on Motor Neurone Disease – the ‘at your fingertips’ guide from readers ‘This book will be a very useful tool for anyone diagnosed with or affected by MND. It is set out in manageable chapters so that people can pick it up and read what they want when they want. In addition, the question and answer style brings to life the issues people are facing in an easy to read format.’ Heidi Macleod, Motor Neurone Disease Association ‘I very much enjoyed reading this book and think it will be well accepted among the many families trying to find information on motor neurone disease.’ Sandra Wilson, Information Officer Scottish Motor Neurone Disease Association MOTOR NEURONE DISEASE Dr Stuart Neilson BSc, PhD Lecturer, Department of Epidemiology and Public Health at University College Cork, Eire; Former Director of Medical Information Systems at the Centre for the Study of Health, Sickness and Disablement [CSHSD], Brunel University Dr Frank Clifford Rose FRCP Consultant Neurologist, London Neurological Centre, Harley Street, London; Previously Director of Academic Unit of Neuroscience, Charing Cross and Westminster (now Imperial College) School of Medicine, University of London; Former Medical Patron, Motor Neurone Disease Association CLASS PUBLISHING • LONDON Text © Stuart Neilson, Frank Clifford Rose 2003 © Class Publishing (London) Ltd 2003 All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by and means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of the above publisher of this book. The authors assert their right as set out in Sections 77 and 78 of the Copyright, Designs and Patents Act 1988 to be identified as the authors of this work wherever it is published commercially and whenever any adaptation of this work is published or produced, including any sound recordings or films made or based upon this work. Printing history First published 2003 Reprinted 2005 The authors and publishers welcome feedback from the users of this book. Please contact the publishers. Class Publishing, Barb House, Barb Mews, London, W6 7PA, UK Telephone: 020 7371 2119 [International +4420] Fax: 020 7371 2878 Email: [email protected] Visit our website – www.class.co.uk The information presented in this book is accurate and current to the best of the authors’ knowledge. The authors and publisher, however, make no guarantee as to, and assume no responsibility for, the correctness, sufficiency or completeness of such information or recommendation. The reader is advised to consult a doctor regarding all aspects of individual health care. A CIP catalogue record for this book is available from the British Library ISBN 1 85959 047 0 Edited by Michèle Clarke Typeset by Martin Bristow Illustrations by David Woodroffe Cartoons by Jane Taylor Indexed by Val Elliston Printed and bound in Great Britain by Butler & Tanner Ltd, Frome Contents Foreword by George Levvy ix Foreword by Lin Newman x Preface by Dr Frank Clifford Rose xi Acknowledgements xiii Note to reader xiv CHAPTER 1 MND explained 1 What is MND? 2 Who gets MND? 4 Other names for MND 6 Types of MND 8 Symptoms of MND 9 CHAPTER 2 The possible causes of MND 15 Connections with other diseases 16 Environmental connections 17 Trauma 20 Genetics 21 CHAPTER 3 Diagnosis and prognosis of MND 24 Diagnosis 25 Reactions to your diagnosis 27 Prognosis 31 vi MND – the ‘at your fingertips’ guide CHAPTER 4 Medical treatments for MND 34 Drugs used in MND 35 Other treatment choices 37 CHAPTER 5 Surgery for MND 43 CHAPTER 6 Complementary therapy and self-help for MND 47 Vitamins and supplements 49 Diet 51 Complementary therapy 51 CHAPTER 7 Problems with swallowing and breathing 59 Swallowing 60 Breathing 64 CHAPTER 8 Problems with communication 67 Interaction with friends and relatives 68 Simple aids 70 Speech aids 74 Telephone-type aids 74 Computers 78 CHAPTER 9 Problems with bladder and bowel function 81 Bladder 82 Bowel 85 CHAPTER 10 Adapting to life with MND 88 Mobility 89 Dressing aids 94 Bathroom adaptations and aids 96 Eating and drinking 100 Furniture 103 Contents vii CHAPTER 11 Care and services 105 CHAPTER 12 Employment issues 110 Rights and obligations 111 Working with MND 115 CHAPTER 13 Financial and legal issues 118 Benefits 119 Home ownership 121 Insurance 123 Wills 125 CHAPTER 14 Coping with MND 128 Coping as a parent with MND 129 Coping as the carer for someone with MND 130 Despair 132 Changing relationships 136 CHAPTER 15 Future research into cures and causes 140 Genetics 143 New drugs 144 GLOSSARY 151 APPENDIX 1 Books and other sources of information 155 APPENDIX 2 Useful addresses 159 INDEX 182 Foreword by GEORGE LEVVY Chief Executive of the Motor Neurone Disease Association Motor Neurone Disease (MND) is considered to be rare, yet every day in the UK at least three people are diagnosed with the disease and three people die from it. It is a condition that undoubtedly alters people’s lives beyond recognition: the lives of people with the disease, and the lives of their relatives, friends and carers. MND is never the same for two individuals, or for those caring for them. Nonetheless, there is much to be learned and much help to be gained from sharing experiences and learning about the disease and its likely progression. Accurate information plays a key role in helping people to understand MND, and is essential in order that they can begin to realize what is facing them and to know that they are not alone. Publications such as Motor Neurone Disease – the ‘at your fingertips’ guide help to provide such information in a well- informed, easy-to-follow format. While such information will not alter the course of a person’s MND, it will hopefully help them and their loved ones to come to terms with the future. This book has much to offer anyone affected by MND, whether personally or professionally, and I hope it will be read not only by people living with MND, but by health and social care profession- als who work in the field. ix Foreword by LIN NEWMAN When I was first diagnosed with MND I really needed a source of information. What a shame because this book would have been my answer. The book is a mine of information for anybody in contact with MND. Because the disease takes so many forms and progresses in so many different ways, there is no single answer to any question. The book provides lots of answers to lots of questions. Some words of advice from me. Never be a victim of, or a suf- ferer with, MND, but always a fighter. A smile goes a long way on a bad day: it exercises the face and lightens everybody’s life. Listen to advice from any professionals you can find, but use your imagination and your own invention to solve problems. When investing large amounts of money in equipment, plan for the worst – it saves money in the long run. For example, don’t buy a stairlift unless you’re sure that you won’t ever, ever need a through-floor lift. Use the Contents list, appendices and index for this book for direct access to what you need to know – some of the informa- tion hopefully you will never need. Keep the book handy because the answer may be at your fingertips. x Preface by Dr FRANK CLIFFORD ROSE FRCP Consultant Neurologist, London Neurological Centre, Harley Street, London; Previously Director of Academic Unit of Neuroscience, Charing Cross and Westminster (now Imperial College) School of Medicine, University of London; Former Medical Patron, Motor Neurone Disease Association The target audience of this book is the patient with motor neurone disease (MND). Just as important are relatives, friends and others who come into contact, whether at the workplace or elsewhere. The over-riding necessity for this publication is that, although there are many treatments, there is as yet no cure. This state of affairs with other diseases, it is fortunate to relate, is steadily becoming rarer – even the two commonest causes of death, cancer and heart disease, have many remedies. These latter two conditions are well-known to the general public, but this is not the case with MND and the following pages will attempt to explain the reasons for this. To the doctor, MND is taught to him from the earliest days of walking the wards and the reason for this is not because it is a common condition, but because, sad to say, it is a ‘good teaching case’; patients develop a multiplicity of physical signs which the student must learn to detect and deduce the cause. This is how the disorder initially impinged on my consciousness and I still have the detailed notes of my first case over a half-century ago. During my years of training to become a neurologist, one of my research projects was the ‘intravital staining with methylene blue of motor end plates in MND’. This grand sounding title meant using a recently introduced (in the 1950s) technique to show the connections between nerve and muscle; although informative, it xi xii MND – the ‘at your fingertips’ guide gave no clue as to the cause of the disease, a mystery that still pertains to this day, in spite of countless research approaches. As a neurologist, I had great difficulty in explaining to patients the implications of the condition but learned, on professional visits to the United States, of groups of patients with the disease and their relatives who came together to discuss their mutual problems and collect money for research.