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 One introduces Alex’s early life and employment, symptom onset and diagnosis, treatment and rehabilitation. Part Two 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, clinical neuropsychology students 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 one charters her journey spanning life prior to the illness, symptom onset and diagnosis, treatment, experience of psychosis, rehabilitation and adjustment to the new normal. Part two 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.
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’s: classification. What causes them? Who is most at risk? The various treatments for meningiomas
Chapter 11: Supplementary Motor Area Syndrome. What is it? Why does it happen? Long term consequences
Chapter 12: Reports and interviews with professional staff and others who knew Alex
Barbara A Wilson
Chapter 13: Alex at the Oliver Zangwill Centre
Chapter 14: Summary and Conclusions
Barbara A Wilson
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.