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


Series: Neuroscience Research Progress
BISAC: MED057000
DOI: 10.52305/DHHV4998

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 lead 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). It also documents conversations between the author 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. Part 2 is a condensed and easy to follow version of the scientific aspects of this research. Part 2 also contains important contributions from other researchers in the field, in a question and answer format. Figures and videos on the website (www.neuralsignals.com) augment the text. Finally, there is a description of the documentary associated with this book written by the producer called ‘Father of the Cyborgs’.


Please note that each part may be purchased separately. Please see options located in the “Binding” pull-down.

Table of Contents

Table of Contents

Part 1

Prelude: Pioneers in the Field of Brain to Computer Interfacing

Preface: Decades of Opening the Door to the Mind

Chapter 1. Breaking the Sound Barrier

Chapter 2.Some Superheroes Only Fly Inside

Chapter 3. Coding and Decoding Erik’s Inner Dialogue

Chapter 4. Believing in the Magic, Counting on the Science

Chapter 5. Unexpected Delays and Eureka Moments

Chapter 6. The Place Where “I” Exists

Chapter 7. Deep Presence: Understanding the “Here and Now”

Chapter 8. The Uncharted Waters of Research: ‘Here There Be Dragons’!

Part 2
Interviews with Erik’s Father and Contributions from Specialists Who Comment on the Field of Locked-In Research and How It Is Evolving

Part 3

Chapter 9. Erik’s Injury

Chapter 10. Meeting Dr. Kennedy

Chapter 11. The Implant Surgery

Chapter 12. Recording from Erik

Chapter 13. Using Single Units to Say “Da, Da”.

Chapter 14. Decoding Phonemes

Chapter 15. Moving from Vowel to Vowel

Chapter 16. The Effects of Emotion on Firing Rates

Chapter 17. Music Relates to Firing Rates

Chapter 18. Conditioning Single Units Nine Years after Implantation

Chapter 19. Limitations of Erik’s Recordings

Chapter 20. Phil’s Implantation Surgery

Chapter 21. Sensory and Motor Relationships

Chapter 22. Decoding Most Phonemes

Chapter 23. Decoding Audible and Silent Speech

Chapter 24. The Future Direction: Ready to Implant Locked-In People

Chapter 25. Why Not Use Other Electrodes and Systems?

Chapter 26. The Future is Almost Here

Afterword: The Father of the Cyborgs



“This book has come at an important time in the evolution of the brain machine interface … Unlocking Erik tells the story from the human side – both in terms of Erik himself as the subject, and Dr. Kennedy as the pioneer. It is a journey of quiet and slow discovery, and has taken courage and risk from all sides.”
Professor Alexander Green
Neurosurgeon, University of Oxford, England

“With Dr. Kennedy widely regarded as one of the pioneers of this technology, he is uniquely placed to discuss the far-reaching consequences and ramifications of BCI, and this certainly helped attract the funding we needed to begin production of the documentary that tracks early breakthroughs in the field.”
David Burke,
Dot Television, Ireland

“Finally, with all the excitement of machine learning, we shouldn’t forget that we are talking about connecting to a neural network with more capabilities and far more creativity than anything that Google has made – the human brain! So let’s try to not forget the brain’s ability to learn.”
Andrew Jackson
Professor of Neural Interfaces, University of Newcastle, U.K.

“We know that neurons involved in internal “thinking” are also clearly controllable. As explored in Phil Kennedy’s study of Erik, the neurons involved in generating speech are a particularly important group of volitionally controllable neurons for speech prostheses.”
Eberhard Fetz

“This book tells a remarkable story. There is a group of patients rendered unable to communicate by a brutal medical misfortune. There is a new therapy involving special equipment… and there is the physician who manages their care… Dr. Kennedy has achieved remarkable success with his brain machine interfaces. He remains focused on the tremendous value of restoring speech to patients who are trapped inside their own bodies…”
Thomas Wichmann

Audience: It is written for neuroscientists at all stages, scientists in general, neurologists, general public, people suffering from locked-in syndrome, ALS Associations

Keywords: Locked-in syndrome; long-term brain recordings; speech prosthetic; Amyotrophic Lateral Sclerosis; brainstem stroke.

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