Living with Motor Neurone Disease


Book Description

Living with Motor Neurone Disease: A complete guide is designed to guide the reader through this complex progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means that messages gradually stop reaching the muscles, which leads to weakness and wasting. Motor Neurone Disease can affect the everyday things that we take for granted. A diagnosis of MND can be frightening and overwhelming. Good quality information and support from people who understand MND is vital at this time. Living with Motor Neurone Disease is written by many of the most distinguished Irish experts on MND, bringing safe, reliable, practical information and reassurance to everyone affected by Motor Neurone Disease. Having accurate information and timely access to the best available services including doctors, neurologists, MND outreach nurses and local community healthcare professionals makes all the difference when it comes to a person's journey with MND. This is a step-by-step guide for everyone which explains what MND is; how it is diagnosed; 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; how to talk to children and adolescents; how to tell family and friends; how to adapt working conditions and home life; and it describes all the supports; medical, psychological technological and practical to cope with the daily impact of living with MND. In summary, it is an invaluable resource to inform, educate prepare and signpost people toward practical everyday supports and clinical expertise. Living with Motor Neurone Disease: A complete guide is a must-read for professionals; for doctors, nurses, educationalists, for psychologists, systemic family therapists and psychotherapists, those working in human resources and everyone who needs to understand the condition when they encounter it.




Against the Odds


Book Description







Too Many Reasons to Live


Book Description

Winner of the Sports Book Awards 2022 The huge Sunday Times number one bestselling inspirational memoir from rugby league legend Rob Burrow on his extraordinary career, his incredible friendship with fellow Rhino Kevin Sinfield, and his battle with motor neurone disease. ‘A pocket rocket of a player and a giant of a character . . . He [was] one in a million and his story is truly inspirational’ – Clare Balding ‘I’m not giving in until my last breath’ – Rob Burrow Rob Burrow was one of the greatest rugby league players of all time. And the most inspirational. As a boy, Rob was told he was too small to play the sport. Even when he made his debut for Leeds Rhinos, people wrote him off as a novelty. But Rob never stopped proving people wrong. During his time at Leeds, for whom he played almost 500 games, he won eight Super League Grand Finals, two Challenge Cups and three World Club Challenges. He also played for his country in two World Cups. In December 2019, Rob was diagnosed with motor neurone disease, a rare degenerative condition, and given a couple of years to live. He was only thirty-seven, not long retired and had three young children. When he went public with the devastating news, the outpouring of affection and support was extraordinary. When it became clear that Rob was going to fight it all the way, sympathy turned to awe. This is the story of a tiny kid who adored rugby league but never should have made it – and ended up in the Leeds hall of fame. It’s the story of a man who resolved to turn a terrible predicament into something positive – when he could have thrown the towel in. It’s about the power of love, between Rob and his childhood sweetheart Lindsey, and of the life-changing bond of friendship between Rob, Kevin Sinfield, and their Rhino teammates. Far more than a sports memoir, Too Many Reasons to Live is a remarkable, awe-inspiring story of boundless courage and infinite kindness.




Motor Neuron Disease


Book Description

Written and designed to provide comprehensive, easily accessible advice for all healthcare professionals involved in the care of patients with this challenging condition, this book addresses the entire care pathway from presentation to diagnosis to symptom management and end of life issues.




Palliative Care in Amyotrophic Lateral Sclerosis


Book Description

Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.




Silent Body, Vibrant Mind


Book Description

In 2001 Peter Anderson was 37 and had the perfect life: very much in love and recently married with an infant daughter he adored; an intelligent and sensitive man working a job he loved as a popular secondary school teacher and a talented sportsman training for a marathon... The bubble was about to burst. Peter was diagnosed with Motor Neurone Disease (MND), a physically crippling disease that destroys nerve cells controlling muscular movement. He was told that over time his body would cease to function - yet his mind, his memory and his feelings would be untouched by the disease. His life expectancy was two years. Incredibly, eleven years on, despite Peter's body wasting away, his mind remains as it has always been: strong and vibrant, intelligent, enquiring, touched with gentle humour. Silent Body - Vibrant Mind has been written with often unimaginable physical difficulty. An unforgettable story about what matters in life.




Palliative Day Care


Book Description

There has been a steady growth in the provision of day care services for people with life-threatening illnesses who live at home. This book includes details of the range of therapies and services that a multi-disciplinary team can provide to address the physical, emotional, psycho-social and spiritual needs of these patients and their families, thus enabling them to remain in their own homes.




Motor Neurone Disease


Book Description




Motor Neuron Disease in Adults


Book Description

'Motor Neuron Disease in Adults' reviews new information from 1998 as it applies to all aspects of motor neuron disease. Articles included use evidence-based methods to ensure that the new information is solid and advances the topic. The book can be used by anyone who provides any type of care to ALS patients.