So, Parkinson's, Call Me Bloody-Minded

By Terry Rummins

This is a personal account of having Parkinson’s Disease from the point of view of someone who has had the disease for twenty years. Terry’s condition is now considered advanced. The book addresses a very complex neurological disorder, characterised by complications in the motor (movement) and non-motor (cognitive) aspects of the late stage condition. It is written in a hopeful and positive manner despite the burden, placed on the author, of the advanced symptoms and the drug side effects.

In So, Parkinson’s, Call me Bloody-Minded, Terry talks about preserving dignity amidst a deteriorating situation where even close relationships come under immense pressure. Her long acquaintance with Parkinson’s has created many methods of dealing with the condition’s difficulties. These methods are included here.

There is humour and there is pain, and the story contains themes emphasising the importance of living a fulfilling life during many traumatic situations that readers should draw inspiration from. It is for those people suffering this condition, their carers, friends and relatives, employers, and the medical profession.

• Language: English
• Publisher: Troubador Publishing Ltd
• Release date: Apr 28, 2022
• ISBN: 9781803139197

Terry Rummins

After working in psychiatric hospitals, Terry Rummins qualified as a psychologist. She developed an interest in the underlying causes of people’s problems and how these can be turned into opportunities. When diagnosed with Parkinson’s at the age of fifty-eight, she began writing about it. The above approach is reflected in all of her books.

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So, Parkinson’s, call me bloody -minded...

TERRY RUMMINS

with illustrations by Jack Rummins

Copyright © 2022 Terry Rummins

The moral right of the author has been asserted.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.

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ISBN 978 1803139 197

British Library Cataloguing in Publication Data.

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

Matador is an imprint of Troubador Publishing Ltd

Acknowledgments

I wish to thank everyone who has helped me during the preparation of this book. My thanks go in particular to my husband Jack who contributed a carer’s view of my illness and some content for the Appendices - he also produced the book’s illustrations and layout; to Nigel Fieldman FRCA who read the manuscript with a critical eye; and to my sons Matthew, Timothy and Steven and my sister Denise for their support over the recent and progressively difficult years. Finally, I wish to thank Barbara McAndrew and Eva Swanton for their help and caring during this time.

I dedicate this book to Parkinson’s people everywhere.

Copyright Terry Rummins 2022

PRAISE FOR TERRY’S BOOKS

SO, I’VE GOT PARKINSON’S DISEASE

‘This book provides a sound introduction to Parkinson’s Disease from the point of view of someone who has had the disorder for ten years.’ Professor Patricia Limousin Consultant Neurologist, UCLH, London

‘The personal voice of Terry Rummins brings home the obstacles of Parkinson’s, but also manages to turn them into a tremendous challenge. It is written from the heart and communicates heart. It is also a positive and informative read for those whose lives come into contact with Parkinson’s. Terry is writing as her Parkinson’s symptoms develop - she inspires hope for us all with her fighting spirit!’ Stephen Lowe, playwright

‘The best no frills book on Parkinson’s I have yet to read.’

Sue whose husband has Parkinson’s, Malvern, UK

SO, WE PROGRESS, PARKINSON’S AND I

‘The first book was good. This is better.

The first was valuable, this is important.’

Dr Jon Stamford BSc PhD DSc

Parkinson’s Movement

‘My husband, who has PD was almost radiant after reading it. It gives specific details about personal experiences which he immediately recognised in himself. This is rarely conveyed in more clinical descriptions about the disease. I would highly recommend it to both sufferers, carers, or anyone wanting insight into the ways in which it affects a sufferer, so variable from day to day and hour to hour’. Kaycee, Amazon verified purchase

PARKINSON’S DISEASE A PERSONAL ACCOUNT IN PICTURES

‘This is an excellent guide for all those affected by Parkinson’s and their health and social care practitioners’.

Nursing Standard, UK

CONTENTS

Chapter

1INSPIRATION

2MOBILITY

3RELATIONSHIPS

4SELF ESTEEM

5RELAXATION

6A TURN FOR THE WORSE

7CARER’S VIEW OF MY LATE STAGE PROBLEMS

8MAINTAINING HOPE

Appendix A

PRACTICAL APPROACHES TO ADVANCED PARKINSON’S

Appendix B

OTHER AREAS OF CONCERN FOR THE PARKINSON’S PERSON

Appendix C

THINGS TO BRING TO THE ATTENTION OF MEDICAL STAFF WHEN ONE GOES INTO HOSPITAL

Appendix D

MY MEDICATIONS

1

INSPIRATION

I have Parkinson’s Disease. According to current ways of speaking and thinking, I am disabled. This word implies that I am less able to carry out what I want to do in life than people who are not disabled and in some ways that is true.

However, if I compare my life to a river; as my Parkinson’s has developed, the water in the river has gradually been dammed up and so, to move forward, it has had to push and force its way through channels that previously did not exist. A volume of moving water cannot be got rid of easily and neither can the essential nature of a human being. Both have to move forward even if it is only drop by drop, limp by limp, often using alternative means from the norm. If one way forward is blocked then another must be found. So, to me, having Parkinson’s Disease means that I regularly have to find alternative, often surprising, ways of expressing and attaining my needs and wants than I did in the past; now using streams and rivulets, whereas I used to be a traveller on the main, fast flowing river. I derive a great sense of achievement from locating and then developing these hidden routes.

Although anyone with an incurable condition could use the above words to describe their lives, I do not have the knowledge that would describe other people’s conditions. All I know is