Life After a Rare Brain Tumour and Supplementary Motor Area Syndrome
Awake Behind Closed Eyes
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.
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
Chapter 11: Supplementary Motor Area Syndrome. What is it? Why does it happen? Long term consequences
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
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.
'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