Sandy Sulaiman - Learning to Live with Huntingtons Disease: One Familys Story

Learning To Live With Huntingtons Disease

of related interest

Alzheimer

A Journey Together

Federica Caracciolo

Foreword by Luisa Bartorelli

ISBN 978 1 84310 408 7

eISBN 978 1 84642 234 8

A Personal Guide to Living with Progressive Memory Loss

Sandy Burgener and Prudence Twigg

ISBN 978 1 84310 863 4

eISBN 978 1 84642 719 0

The Man who Lost his Language

A Case of Aphasia: Revised Edition

Sheila Hale

ISBN 978 1 84310 564 0

eISBN 978 1 84642 626 1

Stroke Survivor

A Personal Guide to Recovery

Andy McCann

Forewords by Robin Sieger and The Stroke Association

ISBN 978 1 84310 410 0

eISBN 978 1 84642 472 4

Dancing with Dementia

My Story of Living Positively with Dementia

Christine Bryden

ISBN 978 1 84310 332 5

eISBN 978 1 84642 095 5

Losing Clive to Younger Onset Dementia

One Familys Story

Helen Beaumont

ISBN 978 1 84310 480 3

eISBN 978 1 84642 862 3

Law, Rights and Disability

Edited by Jeremy Cooper

ISBN 978 1 85302 836 6

eISBN 978 1 84642 122 8

Telling Tales About Dementia

Experiences of Caring

Edited by Lucy Whitman

Foreword by Joanna Trollope

ISBN 978 1 84310 941 9

eISBN 978 0 85700 017 0

Quality of Life and Disability

An Approach for Community Practitioners

Ivan Brown and Roy I. Brown

Foreword by Ann Turnbull

ISBN 978 1 84310 005 8

eISBN 978 1 84642 404 5

Learning to Live with Huntingtons Disease

One Familys Story

Sandy Sulaiman

Jessica Kingsley Publishers
London and Philadelphia

First published in 2007

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 Sandy Sulaiman 2007

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 610 Kirby Street, London EC1N 8TS. 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

Sulaiman, Sandy, 1959

Learning to live with Huntingtons disease : one familys story / Sandy Sulaiman.

p. cm.

ISBN-13: 978-1-84310-487-2 (pb)

ISBN-10: 1-84310-487-3 (pb)

1. Sulaiman, Sandy, 1959---Health. 2. Huntingtons chorea--Biography. 3. Huntingtons chorea--Patients--Family relationships. I. Title.

RC394.H85S85 2007

616.8510092--dc22

[B]

2007006818

British Library Cataloguing in Publication Data

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

ISBN 978 1 84310 487 2

eISBN 978 1 84642 630 8

Thank-yous

Well, I dont want this to sound like Gwyneth Paltrows Oscar acceptance speech, where she collapsed in tears while thanking the world. But, there are a number of people I just have to mention because they keep us going. First and foremost...

Thank you to Joanna Davies,

my incredible friend

without whom this book would not exist

and my life would not be nearly as much fun.

Thank you also to:

All at Hightown Surgery who help keep us afloat, particularly Dr Cornwall, Dr Hin and Carol Blake who provide a constant source of insight, wisdom, strength, support and some rather useful medication.

Carol Dutton, our regional advisor for the UK Huntingtons Disease Association, who thinks for us, fights for us, argues on our behalf, stands up for us when we are too tired to represent ourselves, finds solutions when we have no ideas or resources of our own left, and generally champions our needs.

My mum, Maggie, who keeps us all going with her constant support, acts as unofficial chauffeur, takes a load off of Phil (everything from keeping Dan in ironed school clothes to Friday afternoon shopping), and keeps coming around to help even when I am snappy and rude to her (sorry about that, Maggie).

Phils mum, Pat, who lives almost a hundred miles away but regularly makes the journey up to see us, scrubs and irons everything in sight until it gleams and also stays over when Phil has to work away from home.

Caroline, Vicky, John and everyone else at Turpins Lodge Riding School. And, of course, Charlie, my other man (well, horse, but I tell Phil hes my other man).

My loving friends (you know who you are), especially Helen, Alan and the girls, Andy (Ben) Center, Angela and their girls.

All at the amazing Clive Project (www.thecliveproject.org.uk), who help me live the life I want to live, including Tessa, Nic, Gill and especially, of course, Jo. There are some rare, special people in the world who can light up the lives of those around them. Tess specializes in spotting them and recruits them to work for the Clive Project. Its a unique service and I dont know what Id do without them.

Introduction: The Most Cruel Disease Known to Man

Huntington disease (HD) is an inherited brain disorder that causes progressive deterioration of the physical, cognitive and emotional self. It leads to severe incapacitation and eventual death 10-40 years after the onset of the disease. Although it usually affects adults between the ages of 30 and 45, symptoms can appear in young children and older adults.

Common symptoms are uncontrollable movements, abnormal balance when walking, slurred speech, difficulty swallowing, thinking difficulties, and personality changes. Each child of an affected parent has a 50% chance of inheriting the HD gene, which is located on chromosome four. There is no cure and no effective treatment exists, but scientists are exploring possible treatments and caregivers are developing new approaches to care.

(Paulsen 1999, p.5)

When people ask us what Huntingtons Disease is we say something like Imagine the physical effects of Parkinsons Disease, mixed up with the mental deterioration of Alzheimers and youre in roughly the right territory. Its terminal, but it takes its time, decades sometimes. Oh, and its hereditary: each of your kids has a 50 per cent chance of inheriting it.

Weve heard Huntingtons Disease described as, variously, the gradual and relentless dismantling of a human being (ugh) and the most cruel disease known to man (double ugh).

Its described as cruel because it delivers not just a double whammy, or a triple whammy, but a relentless series of whammies that just keep on hitting a family over the course of years, of generations, in fact.

It just keeps on coming

Steel yourself. Theres:

a gradual mental decline, with depression common and pronounced mental illness including psychosis and delusions not uncommon; thought processes decline as the illness gradually kills your brain cells and the connections between them

an emotional decline, leading to sudden mood swings, a blunting of emotions, loss of ability to relate to people you love, frustration, outbursts of anger and aggression