Motor Neuron Disease: A Practical Manual

Front Cover
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.
 

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Contents

understanding motor neuron disease
1
is it motor neuron disease?
17
3 Natural history of motor neuron disease
37
4 Organization of MND services
49
5 Measurement of change
59
6 Genetics of MND
69
7 Potential diseasemodifying therapies
85
8 Symptom management
95
10 Nutrition
133
11 Disability management
145
12 Endoflife issues
177
13 Carers and families
191
14 Other motor neuron disorders
197
Useful internetbased sources of information
207
Index
211
Copyright

9 Management of respiratory symptoms
113

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About the author (2010)


Kevin Talbot qualified in medicine from the University of London and trained in neurology in London and Oxford. He established the Oxford Motor Neuron Disease Care and Research Centre and leads a multidisciplinary team focussed on the care of patients with MND. His research laboratory is investigating the molecular and cellular basis of motor neuron degeneration using model systems with the ultimate aim of developing better therapies. The clinic team also participates in clinical trials and genetic and biomarker studies. Martin Turner qualified in Medicine from Cambridge University & St George's Hospital Medical School London in 1995. He trained in neurology at The National Hospital for Neurology, Queen Square, London as a Senior House Officer and in the Oxford Deanery as a Specialist Registrar. His PhD, at King's College London, was awarded for clinical research into Motor Neuron Disease (MND). This project involved ligand positron emission tomography (PET), transcranial magnetic stimulation (TMS), and magnetic resonance imaging (MRI) of the brain in sporadic and familial cases of MND. His on-going research is aimed at identifying biomarkers for the disease process using the latest MRI techniques and analysis of spinal fluid across a range of different MND patient groups. Rachael Marsden qualified as a nurse in 1987. For almost 18 years she worked at Ritchie Russell House - a young disabled unit, where she gained extensive experience in the management of complex disability. Her work on the care pathways and experience of people with disabilities in hospital has been published in the British Medical Journal and elsewhere. Her role as coordinator of the MND Care Centre in Oxford, initially a 2-year secondment, has been so challenging both personally and professionally that Rachael has continued. She has a BA (Hons) degree in Rehabilitation and has nearly completed an MSc in Rehabilitation Medicine.
Rachel Botell qualified from St George's Hospital Medical School, London in 1998 and trained in rehabilitation medicine in Oxford. During specialist registrar training she developed a particular interest in Motor Neurone Disease and the holistic management of people living with MND. Dr Botell was a member of the MND care centre team in Oxford between 2005 and 2008. Following a locum consultant post in community neurological rehabilitation in 2008 she took up her current post as Specialist in Neurorehabilitation at Derriford Hospital, Plymouth.

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