There are around 5000 patients in the UK living with Motor Neuron Disease (amyotrophic lateral sclerosis), and many others shouldering the burden of their care. This fatal neurodegenerative disease leads to progressive muscle weakness and wasting, and there is currently no effective treatment. Managing these patients from their initial presentation, through confirmation of diagnosis and throughout their disease journey is challenging for all healthcare professionals. It requires a multi-disciplinary approach involving neurologists, general practitioners, palliative care physicians, specialist nurses, physiotherapists, occupational therapists and speech and language therapists. Each member of the team has different priorities to effectively manage the myriad of symptoms and other practical difficulties, both emotional and financial, that the MND patient may experience. This book is a comprehensive guide to the complexities of care for the patient with Motor Neurone Disease, written by experienced members of a large care centre. It has been specifically written and designed to provide comprehensive, easily accessible advice for all healthcare professionals involved in the care of patients with this challenging condition, including diagnostic, prognostic, physical, emotional, and practical challenges. The entire care pathway from presentation to diagnosis to symptom management and end of life issues is addressed in detail, but in a highly structured, easily accessible format, that allows the reader to find practical answers rapidly. This book is an invaluable resource for neurologists (including those in training), neurology wards and specialist nurses, physiotherapists, occupational therapists, speech and language therapists, respiratory and gastroenterology departments providing NIV or PEG support, palliative care teams and all healthcare professionals with an interest in MND patients. Essential reading for all those involved in MND patient care A comprehensive reference book covering the entire care pathway in MND from diagnosis to end of life Black and white illustrations assist the reader in understanding phenotype heterogeneity Clearly structured to assist the reader in finding answers rapidly Kevin Talbot , Reader in Clinical Neurology and Honorary Consultant Neurologist, John Radcliffe Hospital, Oxford, UK, Martin Turner , Consultant Neurologist, John Radcliffe Hospital, Oxford, UK, Rachel Marsden , Specialist Motor Neuron Disease Nurse, John Radcliffe Hospital, Oxford, UK, and Rachel E. Botell , Specialist in Neurorehabilitation, Derriford Hospital, Plymouth, UK CONTENTS 1: Background: understanding motor neuron disease 2: Diagnosis: is it motor neuron disease? 3: Natural history of motor neuron disease 4: Organisation of MND services 5: Measurement of change 6: Genetics of MND 7: Potential disease-modifying therapies 8: Symptom management 9: Management of respiratory symptoms 10: Nutrition 11: Disability management 12: End of life issues 13: Carers and families 14: Other motor neuron disorders Appendix 1- Useful internet based sources of information Index
