Giving a Voice to those Living with Locked-In Syndrome

Giving a Voice to those Living with Locked-In Syndrome is a unique book that provides a way for the life experiences of people living with Locked-In Syndrome (LiS) to be heard. It combines the personal experiences of those living locked-in, with the biomedical aspects of LiS, including how it is diagnosed and treated, and the technology, such as eye-tracking devices and brain/computer interfaces, enabling those living with LiS to communicate. By highlighting both the positive and the negative elements of living with LiS, the book aims to encourage change, wherever it is needed in the field of LiS, to guide future diagnostic techniques and enable better, compassionate and appropriate care. Most importantly the book focuses on the moving autobiographies of people living locked-in. These personal accounts show their lives before becoming locked-in; their experiences during the illness or accident that resulted in LiS; how they came to terms mentally, emotionally and physically with their complete change in lifestyle; how those around them, their partners, family, friends and colleagues, adjusted; what is helpful to them and what is frustrating; and finally, their hopes for the future. Autobiographies are drawn from authors all over the globe, allowing readers insights into how LiS is dealt with in different countries, in terms of treatment, care and funding. It is valuable reading for all professionals working in the brain injury field, including neuropsychologists and those in the caring professions, as well as students in these fields. It will also be relevant for IT students and those working with new technologies. All royalty payments for this book are going to Mind Care International Foundation, a charity that provides information and support to patients and their families after brain injury.

Shannan Keen has a BA in Psychology and Philosophy, and a Neuroscience Masters from the Brain and Mind Research Institute, University of Sydney. In 2012, as part of her PhD, she founded, and continues to run, the Australian Register for Disorders of Consciousness (ARDoC) within the Brain Foundation. In 2022 she established the annual International Locked-in Syndrome Conference. In 2023 she launched the worldwide Locked-in Syndrome Community Forum on Facebook.

Preface: Shannan Keen. Chapter 1: An Introduction to Locked-in-Syndrome: Diagnosis, Care, and Outcomes Steven Laureys and Mohammad Hossein Khosravi. Chapter 2: Communication From Gestures to Gadgets James M. Brinton. Chapter 3: Brain-computer interfaces and the future of assistive communication David Moses. Chapter 4: "It Doesn't Bend That Way" Duncan R. Campling Chapter 5: Vicissitude Bram Harrison. Chapter 6: Locked out: A real-life story Dick van der Heijde. Chapter 7: I'm still here Ann Johnson. Chapter 8: The second life of Mario Bross Bénédicte Jullien. Chapter 9: Communication without speech Bex Kemp. Chapter 10: Piece Unique Nelleke Koeners and Axelle Herwyn. Chapter 11: Let's not make a whole cheese out of it Isabelle Lauberthe. Chapter 12: A brainstem stroke which led to Locked In Syndrome Wenche Loseth. Chapter 13: "Light at the end of the road" Paqui Villegas, translated by Fernando Vidal. Chapter 14: For a better life Julio Lopes Ribeiro. Chapter 15: Black Dog Dawn Faizey Webster. Chapter 16: Conclusion Shannan Keen.