Locked-in Syndrome after Brain Damage: Living within my head, 1st Edition (e-Book) book cover

Locked-in Syndrome after Brain Damage

Living within my head, 1st Edition

By Barbara Wilson, Paul Allen, Anita Rose, Veronika Kubickova


94 pages | 6 B/W Illus.

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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.

Table of Contents

Foreword Steven Laureys

1. What Is Locked-In Syndrome? What Causes It? Who Is Most at Risk? Do People Recover from this Condition?

2. Accounts of People with LIS

3. Neuropsychological Assessments of Patients with LIS: How Normal Is Their Cognitive Functioning?

4. Is it Always Easy to Diagnose LIS?

5. Paul’s journey

6. An Interview with Liz, Paul’s Wife

7. Treatment at the Raphael Hospital

8. Interviews with Paul’s Friends

9. Paul’s Continuing Involvement with Music

10. Quality of Life for People with LIS, and Assessing Capacity

11. Ethical Issues in Locked-In Syndrome

12. Summary and Conclusions

About the Authors

Barbara A. Wilson is a clinical neuropsychologist who has worked in brain injury rehabilitation for 40 years. She edits the journal Neuropsychological Rehabilitation. This is her 27th book.

Paul Allen has lived with Locked-In Syndrome since 2012. Before his stroke he was a singer, photographer, computer programmer and project manager.

Anita Rose is the Consultant Neuropsychologist and Director of Therapies at the Raphael Hospital, UK and also works as an independent consultant across the globe. She has researched and published extensively on brain injury, chronic neurological conditions and multiple sclerosis.

Veronika Kubickova is a trainee clinical psychologist at the University of Oxford, UK. Previously having worked as an assistant psychologist in neuro-rehabilitation, she has helped people re-adjust to life after brain injury. After qualifying, she plans to work with refugee children who have experienced trauma.

About the Series

After Brain Injury: Survivor Stories

After Brain Injury: Survivor Stories was launched in 2014 to meet the need for a series of books aimed at those who have suffered a brain injury, their families and carers, and professionals who are involved in neuropsychological rehabilitation. Brain disorders can be life-changing events with far-reaching consequences. However, in the current climate of cuts in funding and service provision for neuropsychological rehabilitation, there is a risk that people whose lives have been transformed by brain injury are left feeling isolated with little support.

Because so many of the books on brain injury are written for academics and clinicians they can for the most part be filled with technical and academic language which may be of little help to those directly affected. Instead, this series offers a much-needed personal insight into the experience, as each book is written, in the main, by a survivor or group of survivors, who are living with the very real consequences of brain injury. Each book focuses on a different condition, such as face blindness, amnesia and neglect, or diagnoses, such as encephalitis and locked-in syndrome, resulting from brain injury. Readers will learn about life before the brain injury, early days of diagnosis, the effects of the brain injury, the process of rehabilitation, and life as it is now lived.

Alongside a personal perspective, professional commentary is also provided by a specialist in neuropsychological rehabilitation. The historical context, neurological analyses, data on the condition, treatment, outcome and follow-up, will appeal to professionals working in rehabilitation including psychologists, speech and language therapists, occupational therapists, social workers and rehabilitation doctors. Books in this series will also be of interest to students of clinical psychology, neuropsychology and related courses who value a case study approach as a complement to the more academic books on brain injury.

With this series, we also hope to help expand awareness of brain injury and its consequences. The World Health Organisation has recently acknowledged the need to raise the profile of mental health issues (with the WHO Mental Health Action Plan 2013-20) and we believe there needs to be a similar focus on psychological, neurological and behavioural consequences of brain disorder, and a deeper understanding of the role of rehabilitation in making the lives of brain injured people more tolerable. Giving a voice to survivors of brain injury is a step in the right direction.

Learn more…

Subject Categories

BISAC Subject Codes/Headings:
PSYCHOLOGY / Neuropsychology