Unlocking Erik: A Freedom Journey to Restore the Speech of Those with Locked-In Syndrome

This book depicts the trials and tribulations when trying to restore speech to Erik who was locked-in (paralyzed and mute) at age 16. We implanted electrodes into his brain, initiating a decade of breakthrough research in speech recovery. It led to the authors own brain implant and the consequent successful offline development of the speech prosthetic whereby mute, locked-in people can speak. Part 1 is Eriks story of how he became locked-in following a brainstem stroke, and our efforts to break him out of his locked-in state by helping him speak. It describes my decision making, the tremendous contribution of his family, their anguish and the very relevant comparison with famous locked-in people, namely, Stephen Hawking and Jean-Dominique Bauby (The Diving Bell and the Butterfly). Part 2 documents conversations between myself and Eriks Dad, Eddie. Eddie describes how he was trained in a rehabilitation hospital to take care of his son. His 16-year devotion to his son is unparalleled and heroic. This part also contains important contributions from other researchers in the field, in a question and answer format. Part 3 is a condensed version of the scientific aspects of this research written for the non-scientist. Figures and videos on the website augment the text. Importantly, there is a full documentary associated with this book.