Guide to living with motor neurone disease launched

A guide to living with motor neurone disease in Ireland has been launched by the Irish Motor Neurone Disease Association (IMNDA).

The book - the first of its kind in Ireland – provides practical information for those affected, but also aims to inform healthcare professionals working in this area.

Motor neurone disease is a progressive neurological condition in which the nerves in the brain and spinal cord that control voluntary muscles stop working. This means that messages gradually stop reaching muscles, which leads to weakness and wasting. The disease is progressive and debilitating and there is no cure. 

According to the IMNDA, a person is diagnosed with the disease every two days on the island of Ireland and there are currently over 420 people living with it here.

“We are delighted to have this book available for the families and carers of those with motor neurone disease. The book provides practical information on managing the disease 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 journey,” said Lillian McGovern, CEO of the IMNDA, at the launch of the book.

The book explains what motor neurone disease is, how it is diagnosed and managed, how it affects the individual and the family, the psychological dimensions of the condition and the caregiver’s experience.

It explains how to talk to children and adolescents about the disease, how to tell family and friends and how to adapt working conditions and home life.

It also describes all the supports available - medical, psychological, mechanical, technological and practical - to cope with the daily impact of living with this disease.

“We hope that what emerges from reading this  book is not how grim this disease is but how astonishingly people cope with it. The book is dedicated to all who are living with motor neurone disease 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 association provides in compassionate practical care,” commented the book’s editor, Dr Marie Murray.

Living with Motor Neurone Disease: A Complete Guide is available from Cork University Press at www.corkuniversitypress.com  or from www.imnda.ie. The book costs €14.95 and all royalties go to the IMNDA.