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 author's own brain implant and the consequent successful offline development of the speech prosthetic whereby mute, locked-in people can speak.
Part 1 is Erik's 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 Erik's 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.