So, Parkinson's, Call Me Bloody-Minded

Terry Rummins

Description

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.

Sujets

• Self-help

Informations

• Publié par: Troubador Publishing Ltd
• Date de parution: 28 avril 2022
• Nombre de lectures: 0
• EAN13: 9781803139197
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

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
1 INSPIRATION
2 MOBILITY
3 RELATIONSHIPS
4 SELF ESTEEM
5 RELAXATION
6 A TURN FOR THE WORSE
7 CARER’S VIEW OF MY LATE STAGE PROBLEMS
8 MAINTAINING 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 my Parkinson’s and all I can write about is all I know. Also, we are told that no two Parkinson’s people have the same symptoms and so what I describe in the following pages applies to me, but does not necessarily apply to others with the condition.
I must add that though I found many more similarities between people with Parkinson’s early on in the illness, those who had had PD the longest seemed the most divergent. In other words, people with Parkinson’s do not all proceed along the same straight road. They can develop in different ways and in different directions.
Parkinson’s Disease occurs when the body lacks dopamine, a neurotransmitter, and a lack of dopamine can cause all sorts of physical, physiological, psychological, emotional and cerebral changes. Parkinson’s Disease is something between a challenge and a tragedy, depending on your outlook on life and how you are treated by other people.
I have often expressed my surprise at developing Parkinson’s Disease. I have imagined having, and have had, many roles in life, but becoming a disabled person had never entered my head until Parkinson’s came to stay with me. Having a new role suggests learning new skills, and I have certainly had to do that since developing Parkinson’s. Many of these new skills are everyday acts that I have adapted, to attain what I want.
I have been inspired by very many people in my endeavour to continue achieving my aims, despite Parkinson’s. I take the example of others to motivate myself and to keep trying. For example, the runner Mo Farah fell over during a ten thousand metre race when he was competing very successfully in an Olympic Games. The way that this man picked himself up, apparently ignoring the disruption to his rhythm of running and taking in his stride what must have been, potentially, a catastrophic happening, inspires me not to forget that all my failures are in fact potential opportunities for success. I guiltlessly use the efforts others have put in to achieve their own ambitions in order to help me to achieve mine. For I feel that the positive energy that people need, to achieve a difficult task, is probably drawn from the same pool for all of us. The secret is knowing (initially with little evidence) that the pool exists and people who inspire me remind me of this fact. They also encourage me to believe that I can find my way there, just as they have done.
Parkinson’s is a puzzling condition in which one’s ability to cope with the intricacies of life deteriorates significantly faster than would have been expected if one did not have the condition. Of course, age itself normally contributes to a general physical deterioration in our whole selves, but Parkinson’s is much more than that.
That rather clumsy, middle-aged woman over there, who readily seems to become tied in knots whenever she tries to get something out of her handbag, may have Parkinson’s and, if so, she may well recognize some of the states, both physical and emotional, that I describe in these pages.
However, Parkinson’s is an illness that takes many forms and there are numerous variations in the condition. That is why it is difficult to diagnose.
I have found it very hard to understand the malady of Parkinson’s. I am not referring to the physiology and biochemistry of Parkinson’s which I know something about; I am referring to the expected progress that one learns about any illness; its predictability and how long it takes to develop its behaviour. But Parkinson’s is not predictable. It keeps its secrets to itself.
Understanding has always been very important to me, whether this has been understanding a person or a situation. I find the words ‘you understand’ extremely rewarding. I have developed a way of thinking that is based on the premise that, even if one can do nothing to change what is happening to a person or people, one can at least face the situation, describe it, try to make sense of it and by doing all this, some change is likely to occur. This applies to the observation of myself as well as of others.
When Parkinson’s comes to stay, not only is the patient affected; friends and family, employers and eventually carers may become involved. Of vital importance in the positive development of such a situation is to what extent the Parkinson’s person’s behaviour is understood. As an example, the fact that on one day, when the front door bell is sounded, the person with PD may be able to rise from a chair, answer the front door and interact appropriately with whoever is at the door does not mean that he or she will be able to do so on the next day. This could result in someone else becoming irritated with the patient because of a lack of understanding about how the disease affects the Parkinson’s person’s behaviour. The person with Parkinson’s may sense the other’s irrit