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Book Cover
Author Wilson, Barbara A., 1941- author.

Title Locked-in syndrome after brain damage : living within my head / Barbara A. Wilson, Paul Allen, Anita Rose, Veronika Kubickova
Published Milton Park, Abingdon, Oxon ; New York, NY : Routledge, 2019
Online access available from:
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Description 1 online resource
Series After Brain Injury: Survivor Stories
After brain injury.
Contents Cover; Half Title; Series Page; Title Page; Copyright Page; Table of Contents; Preface; Foreword; Acknowledgements; Chapter 1: What is Locked-In Syndrome? What causes it? Who is most at risk? Do people recover from this condition?; Chapter 2: Accounts of people with LIS1; What happened to Paul?; Note; Chapter 3: Neuropsychological assessments of patients with LIS: How normal is their cognitive functioning?; Chapter 4: Is it always easy to diagnose LIS?; The case of M.A.; The case of U.P.; In conclusion; Chapter 5: Paul's journey; Chapter 6: An interview with Liz, Paul's wife
Chapter 10: Quality of life for people with LIS, and assessing capacity Assessing capacity for people who are locked-in; Chapter 11: Ethical issues in LIS; 1 Diagnosis; 2 Communication; 3 The issue of autonomy and decision making around refusal or acceptance of treatment; 4 The prevention of harm, in other words mitigating suffering; Chapter 12: Summary and conclusions; Appendix Two; References; Appendices; Index
Chapter 7: Treatment at the Raphael Hospital Medical report; Nursing report; Physiotherapy; Speech and language therapy (SALT); Paul's SALT treatment; Occupational therapy (OT); Neuropsychology; External Applications including Rhythmical Massage and Embrocations; Art therapy; Music therapy; Chapter 8: Interviews with Paul's friends; Barbara Hunter -- friend from church; Iona and John Jenkins -- Iona was Paul's singing teacher; Keith and Barbara Payne; Eric Seers -- colleague in police force; Dave Morgan -- colleague in police force; Chapter 9: Paul's continuing involvement with music
Summary The newest title in the series Survivor Stories, this book tells the story of Paul Allen, a photographer who likes opera and was a good baritone singer. At the age of 56 he sustained a stroke that left him paralysed and speechless. He has Locked-In Syndrome (LIS), a rare consequence of brain damage. Although Paul is fully conscious and his cognitive abilities are intact, he is unable to move or speak due to the paralysis of nearly all his voluntary muscles. However, Paul is keen to communicate and through his eye movements he tells his story, from his early life, career, singing and other interests, to the details of his stroke and the effects it has had on his life. The book also includes contributions from Paul's wife Liz, who tells the story from her point of view, along with Paul's physiotherapists, occupational therapists, speech therapists, psychologists and others from the Raphael Hospital who have assisted in Paul's rehabilitation. In telling of his frustrations, his successes, his views on life and how he sees his future, Paul raises awareness of the quality of life possible for those with LIS. Combining scientific knowledge with personal narrative, this unique and optimistic book is of huge importance to any professional involved in the care of someone with a brain injury, and to the individuals and families touched by LIS
Bibliography Includes bibliographical references and index
Notes Print version record
Subject Allen, Paul -- Health
Brain damage -- Patients -- Rehabilitation -- Biography
Cerebrovascular disease -- Biography
Cerebrovascular disease -- Rehabilitation -- Personal narratives
Photographers -- United States -- Biography.
Brain damage -- Patients -- Rehabilitation.
Cerebrovascular disease -- Rehabilitation.
Cerebrovascular disease.
HEALTH & FITNESS -- Diseases -- General.
MEDICAL -- Clinical Medicine.
MEDICAL -- Diseases.
MEDICAL -- Evidence-Based Medicine.
MEDICAL -- Internal Medicine.
United States.
Genre/Form Personal Narrative.
Personal narratives.
Personal narratives.
Form Electronic book
ISBN 131520472X