Angela Amos - Can I tell you about Multiple Sclerosis?: A guide for friends, family and professionals

CAN I TELL YOU ABOUT?

The Can I tell you about...? series offers simple introductions to a range of limiting conditions and other issues that affect our lives. Friendly characters invite readers to learn about their experiences, the challenges they face, and how they would like to be helped and supported. These books serve as excellent starting points for family and classroom discussions.

Other subjects covered in the Can I tell you about? series

ADHD

Adoption

Anxiety

Asperger Syndrome

Asthma

Autism

Cerebral Palsy

Dementia

Depression

Diabetes (Type 1)

Down Syndrome

Dyslexia

Dyspraxia

Eating Disorders

Eczema

Epilepsy

Gender Diversity

ME/Chronic Fatigue Syndrome

OCD

Parkinsons Disease

Pathological Demand Avoidance Syndrome

Peanut Allergy

Selective Mutism

Sensory Processing Difficulties

Stammering/Stuttering

Stroke

Tourette Syndrome

CAN I TELL
YOU ABOUT
MULTIPLE
SCLEROSIS?

A guide for friends, family and professionals

ANGELA AMOS

Illustrated by Sophie Wiltshire

Jessica Kingsley Publishers
London and Philadelphia

First published in 2017

by Jessica Kingsley Publishers

73 Collier Street

London N1 9BE, UK

and

400 Market Street, Suite 400

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Angela Amos 2017

Illustrations copyright Sophie Wiltshire 2017

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying, storing in any medium by electronic means or transmitting) without the written permission of the copyright owner except in accordance with the provisions of the law or under terms of a licence issued in the UK by the Copyright Licensing Agency Ltd. www.cla.co.uk or in overseas territories by the relevant reproduction rights organisation, for details see www.ifrro.org. Applications for the copyright owners written permission to reproduce any part of this publication should be addressed to the publisher.

Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution.

Library of Congress Cataloging in Publication Data

Names: Amos, Angela, author. | Wiltshire, Sophie, illustrator.

Title: Can I tell you about multiple sclerosis? : a guide for friends, family

and professionals / Angela Amos ; illustrated by Sophie Wiltshire.

Description: London ; Philadelphia : Jessica Kingsley Publishers, 2017. |

Includes bibliographical references and index.

Identifiers: LCCN 2016031973 | ISBN 9781785921469 (alk. paper)

Subjects: LCSH: Multiple sclerosis--Juvenile literature.

Classification: LCC RC377 .A566 2017 | DDC 616.8/34--dc23 LC record available at https://lccn.loc.gov/2016031973

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 78592 146 9

eISBN 978 1 78450 413 7

ACKNOWLEDGEMENTS

To my loving family, Alistair, Zoe, Emily and Cathy. To Anthony and all those friends who have helped me along the way. Thank you.

CONTENTS

L ast year I found out that I have Multiple Sclerosis or MS for short. Everyone with MS is affected differently but I think that if I tell you about what happened to me it might help you to understand more about it. I hope that reading my story will help you feel less unsure or worried about MS. Then if you meet someone who has MS or if you find that someone in your own family has MS you will know much more about it.

This is my family Ben, Cara, Dino and Teddy our dog.

B efore I tell you any more though, Id better introduce you to my family. This is Ben, my husband, Cara who is 14 years old, Dino who is 10 years old and our dog, Teddy. We all get on pretty well, most of the time! It helps having Teddy around because if we are feeling upset he loves to look after us!

One of our favourite times is the summer holidays. Cara and Dino are off school and Ben and I take some time off work. Sometimes we stay at home and other times we go away on holiday. We always try to have a fun time, doing things that we can all enjoy together, including Teddy. But last summer felt different

I had no energy, I had to keep resting. I started to feel dizzy and felt like I was moving even when I was sitting still.

B efore we left to go on holiday, I was feeling unwell. I was finding it difficult to remember to pack everything we needed. I felt like a battery that needed to be recharged. Everyone was feeling excited about our holiday but I just felt like lying down. The side of my face and the inside of my mouth became numb. Everyone said that my face looked normal, but I felt like one side of my face was frozen.

Once we were away, my energy seemed to slip away even more. I had to keep resting, I couldnt keep up with the others.

I started to feel dizzy. Even when I was sitting down safely I felt like I was on the move.

One day my energy disappeared completely. I felt like a balloon that had had all its air let out of it. I had to spend a day resting, and I missed a trip to a chocolate factory, which I had been looking forward to. Cara and Dino went with Ben, and they brought a treat back with them. Chocolate!

Later on when we were home again, I noticed that my feet were very cold. I felt like I had ice blocks for feet even on sunny days! The last thing I remember happening that summer was that my legs became very weak. My legs stopped doing what I expected them to do, like I wasnt able to rely on them anymore. I had to really concentrate on walking, because if I didnt, I fell over.

After talking to my local doctor, Ben took me to hospital.

I had a lot of different symptoms.

O nce at hospital I met some very helpful people. A doctor asked me lots of questions about what was happening now in my body and also helped me remember other changes that had happened before our holiday. The tricky thing about MS is that you can experience a lot of different symptoms, and I had not realised that they were all connected. It felt a little like piecing a jigsaw puzzle together, each symptom being a different piece of the puzzle. I think the doctor had an idea of what my jigsaw picture was starting to look like, but I was still feeling puzzled. The doctor arranged for me to be admitted into hospital, so that I could have some tests.

I had an MRI scan. This took photographs of my brain and spine. The photographs showed where the MS was in my brain and spine.

O ne of the tests I had was called an MRI scan. MRI is short for Magnetic Resonance Imaging. For this test I had to lie in a special capsule that took clever photographs of my brain and spine. These photographs were very useful because they showed where MS was active and had been active in the past in my brain and in my spine. Ill explain more about that later. So after a few more tests to rule some other diseases out the puzzle was complete. The doctor talked through what they had discovered and then a nurse met with me to talk some more about my diagnosis of MS.