Life After a Rare Brain Tumour and Supplementary Motor Area Syndrome: Awake Behind Closed Eyes, 1st Edition (Hardback) book cover

Life After a Rare Brain Tumour and Supplementary Motor Area Syndrome

Awake Behind Closed Eyes, 1st Edition

By Alex Jelly, Adel Helmy, Barbara A. Wilson


158 pages

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This book offers a personal insight into the experience of Alex Jelly, a professional fundraiser who developed a rare brain tumour, a papillary meningioma, which was successfully removed. She was left with Supplementary Motor Area Syndrome and associated problems including motor and speech impairments and a temporary psychosis. Discussing Alex’s struggles and triumphs throughout her rehabilitation, this book offers an honest account of her journey from diagnosis to recovery.

Part I introduces Alex’s early life and employment, symptom onset and diagnosis, treatment and rehabilitation. Part II presents her neurosurgeon, Adel Helmy, and a clinical neuropsychologist, Barbara A. Wilson. Adel provides a medical context by explaining Alex’s successful surgery and her post-operative experience. Finally, Barbara concludes with a comprehensive view of Alex’s recovery and gives a voice to the therapists and psychologists who worked with Alex throughout her in and outpatient rehabilitation journey.

This book provides support, understanding and hope for patients who have suffered a brain tumour, and their families. It is valuable reading for any professional involved in neurorehabilitation, studemts of clinical neuropsychology and those touched by brain injury.


'This remarkable book shares Alex’s lived experience of a rare type of meningioma and the perplexing effects that dramatically altered her sense of reality and control over her thoughts, behaviour, speech and body. Part I charts her journey spanning life prior to the illness, symptom onset and diagnosis, treatment, experience of psychosis, rehabilitation and adjustment to the new normal. Part II is written by a leading neurosurgeon and a world-renowned clinical neuropsychologist and provides the clinical context for understanding Alex’s illness and the rehabilitation that was integral to her recovery. Over time, Alex has managed to put the pieces of the puzzle together to find meaning in her illness with the support of family, friends and professionals. This beautifully written, candid and touching account will appeal to other people and family members affected by neurological conditions and cancer, and will inspire anyone facing major life challenges.' - Tamara Ownsworth, School of Applied Psychology, Griffith University, Australia

Table of Contents



Foreword by Dr Jill Winegardner

PART ONE: Alex’s Story

Chapter 1: Life Before

Chapter 2: Symptoms & Diagnosis/ The Lime in the Coconut

Chapter 3: The Op / Happy Valentine’s Day

Chapter 4: Early Visits

Chapter 5: Psychosis and stories – insights and butterflies

Chapter 6: Cancer

Chapter 7: Rehabilitation & Recovery

Chapter 8: Naturopathy & strategies that have helped

Chapter 9: Life Today

PART TWO: Background Information from Adel Helmy and Barbara A. Wilson

Chapter 10: Meningioma and the brain

Adel Helmy

Chapter 11: Supplementary Motor Area Syndrome. What is it? Why does it happen? Long term consequences

Adel Helmy

Chapter 12: Reports from staff and Alex's former partner

Barbara A Wilson

Chapter 13: Alex at the Oliver Zangwill Centre

Chapter 14: Summary and Conclusions

Barbara A Wilson



About the Authors

Alex Jelly was a professional fundraiser for charities for many years in London and then a fundraising consultant for UK and international charities. In the summer of 2016 she started to feel odd and that led to the brain tumour, which has in turn led to this book.

Barbara A. Wilson is a clinical neuropsychologist who has worked in brain injury rehabilitation for 42 years. She has won many awards for her work, including an OBE for services to rehabilitation and five lifetime achievement awards.

Adel Helmy is a University Lecturer in the Division of Neurosurgery, University of Cambridge, and an Honorary Consultant Neurosurgeon at Cambridge University Hospitals NHS Trust.

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