Troubador So, We Progress, Parkinson's and I

Released: 28/07/2016

ISBN: 9781785892899

eISBN: 9781785896262

Format: Paperback/eBook

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So, We Progress, Parkinson's and I


Author of Parkinson’s Disease (Matador, 2013) and So, I’ve Got Parkinson’s Disease (Matador, 2013), Terry Rummins shares her personal account of having Parkinson’s Disease from the point of view of someone who has had the condition for fourteen years. So, We Progress, Parkinson’s and I addresses a very complex neurological disorder that attacks movement and the initiation of movement. Written in a hopeful and positive manner, this book is for anyone experiencing the ‘enforced stillness’ of a developing Parkinson’s. Ideal for carers, friends, employers, the medical profession and all those people who have a long-term chronic situation. So, We Progress, Parkinson’s and I expresses the setbacks of failure and the joy of progress encountered in the four years since publication of Terry’s previous book. This book is an engaging account that includes practical approaches to everyday challenges including pain, dealing with ‘ons’ and ‘offs’ (the interaction of disease and medication), nutrition and drugs and the confusion that arises when additional difficulties occur. Woven with humour, this book encourages communication and highlights the importance of relationships.

The following are typical responses to 'So, I've got Parkinson's Disease':

Thank you so much for your book; I simply devoured it, all the time wishing I'd been able to read something like this when my husband was first diagnosed with Parkinson's several years ago.
It has helped so much to know what it feels like from the perspective of the person with Parkinson's rather than finding websites which are more technical or scientific.
I think your book should be read by every GP and every person who is likely to come in contact with people with Parkinson's - nurses, physiotherapists, opticians, dietitians, carers, to name but a few.
I thank you again - it was courageous of you to write it and I feel sure it will help many people in years to come.
Sue Gilliat

“This is a very good book, containing a mixture of anecdotes, narrative and science. It is engaging, compelling and refreshing.”
The Cure Parkinson’s Trust magazine, Summer 2013

‘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 Limousin, Reader in Clinical Neurology and Consultant Neurologist, University College London Hospital (UCLH), London.

It is a popular maxim in the publishing industry that everyone has one book in them – one novel or cookbook and that's it. How many writers release their first novel to huge acclaim only to find themselves, at best, unable to produce a second of commensurate power. At worst, the second novel never materialises; lost in the maelstrom of apathy and publisher lunches.

In Parkinson's, the problem is the same if not more acute for writers. They start out with confidence. They have something to say and the ability to say it. Most commonly, they will be in the early stages of the illness – maybe the first five years – before the condition has had a chance to bare its teeth. Writing is easy, buoyed by the newfound creativity from the dopamine agonists. The war on Parkinson's is a phoney war.

By the time it gets to 10 years post diagnosis, a full decade in which Parkinson's has revealed itself in all its chameleon forms, apathy can be the dominant feature of many with Parkinson's. Their energy levels are at a low ebb – writing a letter is daunting enough, let alone a book. And this is a pity, because by the time they have had Parkinson's a decade they have something important to say. No longer is it a phoney war. They have developed the tools needed to tackle the condition well at exactly the time when their ability to communicate those skills is waning.

I lose track of the number of people who write profusely about the early years of Parkinson's but who somehow fall off the radar when it starts to get tough. There are very few books covering that critical "moving on" phase of Parkinson's. And this is an irony, because this is the point at which you begin seriously to need guidance.

In her first book "So I've Got Parkinson's Disease", published in 2012, Terry gave an account of those first years, written at the end of her first decade of illness. The book was good, well written and practical. It was optimistic – Terry is by nature an optimist – but realistic as well. It did not paint a false picture of the condition; Terry is a psychologist by training and therefore well equipped to discuss the condition dispassionately. The first book was well received by everyone I know who read it.

In, "So We Progress, Parkinson's and I", her second book, Terry covers those transitional years from 10 to 14 after diagnosis; those years that nobody writes about. Those years when Parkinson's ceases to be a minor irritation and becomes a major encumbrance; those years when it's no longer a joke. These are the years people need to hear about and these are the years that they so rarely do.

Terry has done the community a significant service with this book. She tackles the subject with honesty and positivism and the issues she tackles are above all "second decade" issues. The first book contains chapters such as "stress", "drugs", "movement" and "exercise". The hallmarks of the new book are "crises", "a shock", "simplifying in order to think" and "who am I?" It doesn't take a genius to realise that these reflect the enhanced realism of that second decade.

Terry does not have all the answers by any means; who does? But it's more important that she knows what the questions are. And this book amply lays out the questions people need to think about. In that second decade, you need to up your game because Parkinson's is turning up the heat. Terry recognises this. She talks practically about how to deal with 'off periods', the necessity of charts and self-discipline. This second book of Terry's is once again practical, positive and realistic.

The first book was good. This is better. The first was valuable, this is important.

by Dr Jon Stamford BSc PhD Dsc

Terry Rummins

Terry spent much of her childhood abroad, in France, Malta and Germany.She developed an interest in psychology at the age of fifteen, after reading Freud. Working as a nursing auxilliary in several psychiatric hospitals further developed this interest and she decided to follow a career in psychology. After gaining the necessary qualifications she worked as a psychology lecturer, an educational psychologist and a counselling psychologist. For several years she was the Principal Psychologist in a London borough. Terry's mother was French and Terry has a strong connection with that country. She and her husband, Jack, now live for part of the year in France. They are active members of English and French Parkinson's groups.

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