Managing Your Multiple Sclerosis

259 Pages·2004·4.321 MB·English

by  Ian Robinson, Frank Clifford Rose

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Practical advice to help you
manage your multiple sclerosis
‘This book is well written, clear
and accurate – it will be a good
reference book for people with MS’
Dr Alexander Burnfield, Trustee, MS Trust
Prof Ian Robinson and
Dr Frank Clifford Rose
Managing your Multiple Sclerosis
Comments on Managing your Multiple Sclerosis
‘The book is well written, clear and accurate – it will be a good
reference book for people with MS.’
DR SANDY BURNFIELD, Stockbridge

Managing
your Multiple
Sclerosis
Practical advice to help you
manage your multiple sclerosis
Ian Robinson
MA
Director of the Brunel MS Research Unit,
Department of Human Sciences,
Brunel University, West London
and
Dr F Clifford Rose
FRCP
Director of the London Neurological Centre
CLASS PUBLISHING • LONDON
Text © Ian Robinson and FClifford Rose 2004
© Class Publishing (London) Ltd 2004
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 (elec-
tronic, 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 2004
Reprinted 2004
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: [phone] [International +4420]
Fax: [phone]
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 071 3
Edited by Michèle Clarke
Designed and typeset by Martin Bristow
Illustrations by David Woodroffe
Indexed by Val Elliston
Printed and bound in Finland by WS Bookwell, Juva
Contents
Note to reader ix
1 Multiple sclerosis explained 1
What is MS? 1
Types of MS 3
Symptoms of MS 4
The causes of MS 8
Diagnosing MS 11
2 Medical management of MS 12
Treatment rather than cure 12
Approaches to treatment 13
The beta-interferons and the managment of MS 14
Glatiramer acetate (Copaxone) and the management of MS 19
The future of DMTs (disease-modifying therapies) in MS 20
Steroids 21
Getting more information on drug therapy 23
Team approach to management 24
Visiting your GP/neurologist/MS Specialist Nurse 26
Other support 28
vi MANAGING YOUR MULTIPLE SCLEROSIS
3 Complementary therapies and MS 31
Assessing the value of complementary therapies 31
Safety of complementary therapies 33
Finding a practitioner 34
Costs involved 34
Some types of CAM therapy 35
4 Problems with urination and bowels 44
Bladder control 44
Bowel function 55
5 Sexual relationships 59
Problems for women 59
Difficulties with erections 61
Psychological problems and ‘libido’ 64
Problems during intercourse 65
6 Sensations and pain 68
Sensations 68
Balance 71
Pain 72
7 Fatigue,cognitive problems and depression 78
Fatigue 78
Cognitive problems 80
Depression 87
Mood swings and euphoria 89
8 Mobility and managing everyday life 92
Professional help 92
Exercises 93
Aids and equipment 105
Driving 120
CONTENTS vii
9 Speech difficulties 125
Voice production 125
Dysarthria 126
Helping yourself 127
Further help 127
10 Eating and swallowing difficulties;diet and nutrition 129
Eating and swallowing difficulties 129
Diet and nutrition 132
11 Eyesight and hearing problems 141
Eyesight 141
Hearing problems 144
12 Employment 145
Telling your employer 145
Promotion 146
Telling your colleagues 146
The Disability Discrimination Act 1995 and employment 147
13 Finances 150
Benefits 150
Insurance 156
Healthcare finance 158
Managing finances 159
14 Housing and home adaptations 161
Getting help for housing adaptations 161
Getting help for housing repairs 163
Re-housing 164
Sheltered housing 166
viii MANAGING YOUR MULTIPLE SCLEROSIS
15 Care 167
Care in the community 167
Respite and residential care 172
16 Leisure,sport and holidays 174
General information on leisure activities and hobbies 174
Day trips out 177
Holidays 179
17 Pregnancy,childbirth and the menopause 182
Pregnancy 182
Childbirth 183
Other women’s issues and the menopause 185
18 Research 187
Types of research 187
New lines of research 198
Finding out more 200
Glossary 202
Appendix 1:Useful addresses and websites 210
Appendix 2:Useful publications 230
Index 234
Note to reader
Managing Your Multiple Sclerosisis not a book about what MS is, its causes
and diagnosis. It is a practical guide to its management and there is more
information to be found in Multiple Sclerosis – the ‘at your fingertips’
guide, which can be found in your local bookshop, library or possibly
your nearest health clinic; also the MS Society (details in Appendix 1)
can provide you with many information sheets on this subject. This new
book was written by popular demand from readers of the first book who
wanted to know more about practical steps that they could take in their
day-to-day living with MS.
There is a glossary at the end of this book to help you with any words
that may be unfamiliar to you. If you are looking for particular topics,
you can use either the detailed list of Contents on pp. v–viii or the Index,
which starts on p. 234.
ix