Incurable Optimists

Michael Mcdonald

Description

This book, 'Incurable Optimists', may be the only book that will tell you what it is actually like to live with Parkinson's disease.Written by people whose lives have been impacted by Parkinson's, these true tales are valuable examples of how one can live one's best possible life with this difficult condition. The tales are from those newly diagnosed and from others who have lived with Parkinson's for more than thirty years. Michael McDonald, whose working life had been helping large companies solve complex problems, recognised the pressing need for this book during Zoom sessions with the Parkinson's group in Canterbury, UK.The members of the group had all met previously at various therapy sessions, but they had never told their stories to each other or shared their personal challenges and solutions. As soon as they did, and word got around, many other helpful tales began arriving from all over the world.Prepare to be inspired!

Informations

• Publié par: Distributed by eBookpartnership
• Date de parution: 01 juin 2022
• Nombre de lectures: 0
• EAN13: 9781839784798
• Langue: English

Extrait

Incurable Optimists
Getting the better of Parkinson’s Disease
Michael McDonald


Incurable Optimists
Getting the better of Parkinson’s Disease
Published by The Conrad Press Ltd. in the United Kingdom 2022
Tel: [phone]
www.theconradpress.com
[e-mail]
ISBN 978-1-839784-79-8
Copyright © Michael McDonald, 2022
The moral right of Michael McDonald to be identified as author of this work has been asserted in accordance with the Copyright, Designs and Patents Act 1988.
All rights reserved.
Typesetting and Cover Design by: Charlotte Mouncey, www.bookstyle.co.uk
The Conrad Press logo was designed by Maria Priestley.


Foreword – Incurable Optimists
M any of us who live with illness, or alongside illness, are aware that poor health can transport us into another world. The critic Susan Sontag described illness as ‘the night side of life’, and famously went on: ‘Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick.’
What is so wonderful about the many heartening stories in this collection is how they make clear that a diagnosis is never a one-way ticket from one to the other; that there are many ways of living well with illness. That on occasion, illness can even offer us new and valuable experiences which, though we might have wished we’d never had to face them, nonetheless bring consolation as well as their own rewards.
My work as a GP brings me into daily traffic between these worlds of the well and the sick, whether it’s a young mother fretful over her feverish baby, an elderly man with terminal cancer, a middle-aged professional meeting a diagnosis such as Parkinson’s, a teenager crippled with depression or anxiety. My work as a writer makes me keenly aware of how we humans understand the world through stories; though not all of them will have a happy ending, we each can have a hand in writing part of our own. I’m perpetually surprised by the creative ways my patients meet adversity, and often wish there were more ways for them to share their own solutions with one another. I hope there will be many more projects such as this book, which offer such a lavish wealth of sharing stories.
When Michael McDonald approached me to ask if I’d write these few words of foreword, he mentioned he’d read about a book of mine that concerned Recovery in all its guises, a book that made a plea for our society to restore respect to the process of convalescence. It called for us to reconsider ‘health’ as a balance, rather than as a final destination. I’m convinced that even with an incurable condition it’s still possible to ‘recover’ in the sense of building towards a life of greater autonomy and dignity.
Michael described how the Covid pandemic pushed Canterbury’s local Parkinson’s Therapy sessions online, and how the initial frustration of Covid restrictions had allowed for a new kind of support to blossom instead. ‘We all learned from one another and so the idea of a book came from the concept of Chaucer’s Canterbury tales’, he wrote to me. ‘A group of pilgrims sharing a journey, telling their own tales as they searched for a miracle.’ That the group was obliged to meet online offered a paradoxical freedom: many others from farther afield felt able to join, and soon the stories of the local Canterbury group were jostling alongside others from all over the world.
Just as Parkinson’s has imposed restrictions on the lives of the many contributors to this book, it has also occasioned new possibilities and new perspectives. I’m deeply grateful to have read these tales, and hope they’ll offer reassurance and encouragement for those who feel as if they are stumbling into the new and unfamiliar landscape of Parkinson’s Disease. The border between the kingdoms of the sick and well is porous; these tales prove we can all find ways to move back and forth between them. The following pages offer so many inspirational words, but I will leave you with a phrase from the tale of the mountaineer:
‘So I say: don’t avoid the uneven ground! Take it and climb it.
The hell with Parkinson’s for as long as possible!’
Dr Gavin Francis, doctor of medicine and best-selling author
www.gavinfrancis.com May 2022


Prologue
D uring lockdown, our local Canterbury group for people with Parkinson’s Disease stopped the usual in-person physical therapy sessions and started meeting online. We found that we opened up and shared experiences, far more than when we had previously met face-to-face for physical therapy, speech therapy, or music and movement. We soon started sharing our stories with each other about what life is really like with Parkinson's – the challenges and limitations, but also the hopes and enjoyment. In doing so we found out how varied our experiences and stories are.
Word got around the community of people living with Parkinson’s, and soon we had gathered stories from all across the world. It was a diverse group of people from different walks of life – from a salesman to a mountaineer, a cartoonist to a nurse, as well as those who care for and support them. Some told stories, while others sent poems and songs which helped the individual to live with the condition. Everyone was on their own journey of discovery and learning, and for each of us the route is different. We all hope for a miracle and expect to be disappointed, but we have found it helpful and reassuring to learn about each other’s experiences – through this book we hope that other people affected by Parkinson’s will do so too.
We asked ourselves:
What was life like before Parkinson’s?
What would I have liked to know then?
What do I know now?
What are the important things to remember?
What do I need to do?
We are sharing our answers and experiences in the tales contained in this book – our ‘Canterbury Tales’.


The salesman’s tale
W hen I decided to leave the then-biggest company in the world to become self-employed, my nine-year-old daughter asked me: ‘Daddy, how will you know when to retire?’ It was a great question to which I had no real answer, just a feeling that I’d know when the time came.
I didn’t miss a day’s work through illness during the next twenty years, but when you work for yourself of course, it’s not a sensible thing to do. My clients were located all over the world – consultancies, IT companies and governments. All wanted help with their bigger sales deals. During one of my final weeks, I worked in Copenhagen on the Monday, Frankfurt on Tuesday, Vienna on Wednesday, then to Milan, and rounded the week off in Paris, the only day that I actually stopped for lunch.
Heading for home on the Friday evening, I paid my hotel bill and was going for a taxi when a pain exploded in my back. I froze. My body just said ‘no more.’ The retirement question had been answered.
Together with my wife we had decided that we would move house when I retired, as it would no longer be necessary to be close to Heathrow Airport. After a year of looking around the major cathedral cities, we bought a house near to Canterbury, Kent. This proved to be very convenient for heading over the Channel to our apartment in France.
My retirement had commenced. However, I had a persistent problem, a painful back. Sessions with a physiotherapist seemed to have fixed it at first, but only for a few days before the pain returned. An effort to disregard it was not successful, and nothing seemed to alleviate the pain. It was impossible to work out what made it worse or what caused it to go away.
Eventually I went to the doctor to see if there was anything she might recommend that we could try. She listened and then said: ‘How long have your hands trembled?’ I told her that I hadn’t really noticed, and she just replied ‘I think you might have Parkinson’s.’
I had been thinking that somehow I was ageing too quickly, so I was strangely relieved. The only thing that I knew about Parkinson’s was it made your hands shake. She suggested that there was more to it than that and arranged for me to see a neurologist.
But I needed to find out about Parkinson’s; I needed to talk to other people with it, and then I should be able to work out how to fix it. My top skill after all was solving problems that had eluded others. My methodology would be the same: first analyse the need, then identify possible solutions, and then test my conclusions.
It took very little time for me to accept that it wasn’t as simple as that. I realised that my symptoms varied every day. I could feel fine one day and terrible the next. Some symptoms would require attention every day and the important thing was to deal with the one that was causing me the most trouble. There are so many different symptoms and levels of severity that no two PwP (People with Parkinson’s) are likely to experience the same.
I had a problem I couldn’t hope to solve. The only thing I could do was to address individual symptoms as they arose and plan my strategy. It was then when I realised how complicated it could become. The only real way of doing it was to deal with the problem that was most urgent at any one time.
I called my plan ‘the squeaky wheel’. Every day I would decide what was disturbing me the most and that would get the oil. It’s all very confrontational; whatever is causing the biggest problem I deal with. If my legs are stiff, I go for a walk. If my voice is very quiet, I sing as loudly as the neighbours will permit. If I’m constipated, I sort it out. And so, we go on, if my feet freeze (meaning I can’t move), I step backwards, or to the side. I try to tell my brain what I want it to do. When I spot my mask face in a mirror, I gurn at the image until it goes away.
If nothing is working, I go and lie down for thirty minutes or until my next pill is due. If I’m just feeling