List of people with locked-in syndrome

French journalist Jean-Dominique Bauby suffered a stroke in December 1995. When he awoke 20 days later, he found his body was almost completely paralyzed; he could control only his left eyelid (as the other was sewn shut to prevent an infection). By blinking this eye, he slowly dictated one alphabetic character at a time and, in so doing, was able over a great length of time to write his memoir, The Diving Bell and the Butterfly; the memoir was adapted to the screen in a namesake 2007 movie. Three days after the book was published in March 1997, Bauby died from pneumonia.[1] He was instrumental in forming the Association du Locked in Syndrome (ALIS) in France.[2]

In the summer of 2011, Rabbi Ronnie Cahana of Congregation Beth-El in Montréal suffered a severe brainstem stroke that left him in a locked-in state, able to communicate only with his eyes. With his family's help he continued to write poems and sermons for his congregation, letter by letter, by blinking. He has since regained his ability to breathe by himself and speak. He describes his experiences as a blessing and a spiritual revelation of body and mind.[3] His story was told in a Ted Talk given by his daughter called "My father, locked in his body but soaring free". He is the son of painter Alice Lok Cahana.[4]

27-year-old Nick Chisholm of Dunedin, New Zealand, brother of Survivor NZ host Matt Chisholm, suffered a series of mini-strokes, culminating in a massive brainstem stroke during a rugby game on July 29, 2000. He has since recovered some muscle usage, and has become a body-builder and a personal trainer for other disabled people. On March 26, 2020, his wife Nicola gave birth to triplets, conceived with Nick via IVF.[5][6]

Stephen Hawking had a progressive motor neuron disease related to amyotrophic lateral sclerosis (ALS) that began developing in the early 1960s. He was almost entirely paralyzed and communicated using a speech generating device. In 2005, as the disease progressed, he began to control his communication device with movements of his cheek muscles,[7][8][9] with a rate of about one word per minute.[8] Hawking collaborated with researchers on systems that could translate his brain patterns or facial expressions into switch activations.[9][10][11]

In 1983, Rom Houben survived a near-fatal car crash and was diagnosed as being in a vegetative state. Twenty-three years later, using "modern brain imaging techniques and equipment", doctors revised his diagnosis to locked-in syndrome.[12] He was initially reported as communicating by typing into a keyboard with his right hand,[13] though the presence of a facilitator to move his hand attracted sharp criticism and strong doubts that Houben's communications were authentic.[14][15][16]

In early 2010, Dr. Steven Laureys, Houben's neurologist, admitted that subsequent tests had demonstrated Houben had not actually been communicating via the facilitator, and Der Spiegel, which had originally "quoted" many of Houben's facilitated statements, retracted those quotes as being inauthentic.[17] Laureys maintained the MRI data that had led him to diagnose Houben as locked-in still suggested he was conscious.

Houben's case had been thought to call into question the current methods of diagnosing vegetative state and arguments against withholding care from such patients.[12][18]

In 2002, Elias Musiris made headlines as the first fully locked-in patient to regain some measure of communication through EEG. Though ALS had left Musiris unable even to move his eyes or blink, training from neurological researcher Niels Birbaumer taught him to use an EEG brain-machine interface to answer yes-or-no questions and spell his name.[19]

Tony Nicklinson was born on 2 April 1954. Nicklinson was a rugby union player and a successful civil engineer. The 58 year old was paralyzed from the neck down after suffering a stroke in 2005. He was not able to speak or move any parts of his body apart from his head and eyes. He had spent two-and-a-half years undergoing therapy in a hospital before moving home in a wheelchair to be cared by his wife, Jane, and his two teenage daughters Lauren and Beth. He described his life as a "living nightmare".

Nicklinson attempted to seek a landmark ruling in the British courts which would have allowed him the right to an assisted death, but he lost the case in the High Court.[20] He eventually died on 20 August 2012 at his home in Melksham, Wiltshire by refusing food. His family continued his case after his death, before it was ultimately rejected in the Supreme Court.[21]

In 2010, ex-Premiership footballer Gary Parkinson suffered a massive stroke and was later diagnosed with locked-in syndrome.[22] This, however, has not ended his career in football, as he is now part of Middlesbrough F.C.'s scouting analysis team, watching potential players on DVD and relaying the verdict to the Middlesbrough manager Tony Mowbray solely through blinking.[23]

Martin Pistorius began developing locked-in syndrome when he was 12 years old. He went into a coma for 2–3 years, after which point he slowly regained consciousness but was unable to communicate this to others until he was around 19 years of age. Now capable of some movement and able to communicate with a speech computer, Pistorius currently works as a freelance web designer/developer and has published a book about his life entitled Ghost Boy.[24][25][26]

Tony Quan, a popular graffiti artist, was diagnosed with the nerve disorder ALS in 2003, which eventually left him fully paralyzed except for his eyes. Quan uses the technology called EyeWriter to communicate his art and has since had his work displayed in numerous art shows nationally.[27][28]

In 1999, 16-year-old Erik Ramsey suffered a stroke after a car accident that left him in a locked-in state. His story was profiled in an edition of Esquire magazine in 2008.[29] Ramsey is currently working with doctors to develop a new communication system that uses a computer that, through implants in his brain, reads the electronic signals produced when he thinks certain words and sounds. At present, Ramsey is only able to communicate short and basic sounds. However, doctors believe, within a few years, Ramsey will be able to use this system to communicate words and phrases, and eventually, to "talk" normally.[29][30][31]

In 1966, Julia Tavalaro, then aged 32, suffered two strokes and a brain hemorrhage and was sent to Goldwater Memorial Hospital on Roosevelt Island, New York. For six years, she was believed to be in a vegetative state. In 1972, a family member noticed her trying to smile after she heard a joke. After alerting doctors, a speech therapist, Arlene Kratt, discerned cognizance in her eye movements. Kratt and another therapist, Joyce Sabari, were eventually able to convince doctors she was in a locked-in state. After learning to communicate with eye blinks in response to letters being pointed to on an alphabet board, she became a poet and author.

Eventually, she gained the ability to move her head enough to touch a switch with her cheek, which operated a motorized wheelchair and a computer. She gained national attention in 1995 when Richard E. Meyer of the Los Angeles Times published a cover story about Tavalaro. In 1997, Erika Duncan's profile of Tavalaro and her co-author Richard Tayson, "Decades After Silence, a Voice Is Recognized," ran in the Long Island edition of The New York Times[32] and in April 1997, "The Long Road Home" appeared in Newsday.[33] Tavalaro appeared with Richard Tayson on Dateline NBC and Melissa Etheridge's Beyond Chance. Their book was published by Viking Penguin in 1998 and was translated into German, where it was published as Bis auf den Grund des Ozeans by Verlag Herder. Tavalaro's story became a bestseller in Germany. She died on December 19, 2003 at the age of 68.[29][34]