Living with Motor Neurone Disease: A complete guide
Every two days someone on the island of Ireland is diagnosed with Motor Neurone Disease (MND). MND is a neurodegenerative condition in which the nerves that control voluntary muscles stop working. This affects ordinary everyday activities that we take for granted. Walking, talking, even breathing may become virtually impossible.
Being diagnosed with MND can be difficult which is why the Irish Motor Neurone Disease Association (IMNDA) has launched “Living with Motor Neurone Disease: A complete guide.” This publication is the first of its kind in Ireland. It is a vital resource, designed to provide all the information needed to negotiate a path through the challenges that MND may present.
Speaking at the launch in University College Dublin, RTE’s Claire Byrne said, “Navigating the path following a life changing diagnosis can be bewildering and exhausting. This wonderful book shines a guiding light on the road ahead with the experts who have walked it- the medics, the caregivers and, perhaps most importantly, those who are living with Motor Neurone Disease. I know this guide will provide some comfort to those who are starting on this road and their families, whose burden will only be eased if we all commit to supporting them.”
While MND is a rare disease it is a devastating diagnosis so good quality information from people who understand MND is vital. It takes time to learn about MND, to absorb the implications of it; to talk about it; to let family adjust to it; to help friends understand it and to learn to live a life that is altered in which the future is changed and the present is challenging. Living with Motor Neurone Disease: A complete guide is a practical and reassuring book at this time.
Speaking at the launch Lillian McGovern CEO, IMNDA said “We are delighted to have this book available for the families and carers of those with MND. The book provides practical information on managing MND and provides an insight into the many varying and challenging aspects of the illness. We hope that it will also inform healthcare professionals working with families in supporting them through their MND journey.”
Living with Motor Neurone Disease is a step-by-step guide. It explains what MND is, how it is diagnosed and managed; how it affects the individual and the family; the psychological dimensions of the condition; the caregiver experience; living with the condition and facing the future too. It shows how to talk to children and adolescents, how to tell family and friends, how to adapt working conditions and home life. It describes all the supports; medical, psychological, mechanical, technological and practical to cope with the daily impact of living with MND particularly the crucial supports provided and coordinated by the IMNDA.
Living with Motor Neurone Disease is the fourth book in the Cork University Press MindYourSelf book series edited by Clinical Psychologist Dr Marie Murray. A diagnosis of MND can be overwhelming so good quality information and support from people who understand MND is vital at this time.
Speaking at the Launch, Dr Marie Murray said “We hope that what emerges from reading this MindYourSelf book is not how grim MND is but how astonishingly people cope with it; how great the love of families for each other; how concerned are friends, how expert the professionals; how determined the researchers to crack the code, find the cure and blitz it into history. The book is dedicated to all who are living with MND and everyone it has bereaved. Having collaborated with the IMNDA for the past two years on this book there are insufficient superlatives to describe what the IMNDA provides in compassionate practical care – all based on its maxim ‘until there is a cure, there is care.”
Prof Joe Carthy commented “This wonderful book, which will be so helpful for anyone touched by MND, forms part of the great legacy of the late Fr. Tony Coote. Fr. Tony was an inspirational figure whose “Walk while you can” campaign did so much to raise funds and awareness of MND. The idea for writing the book came from conversations Marie had with Fr. Tony.”
Living with Motor Neurone Disease: A complete guide is available from Cork University Press €14.95 at www.corkuniversitypress.com or from www.imnda.ie Royalties to Irish Motor Neurone Disease Association
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For further details, please contact Derbhla Wynne pr@imnda.ie or call (083) 014 7549
Photos provided by Garrett White Photography
