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Wikipedia - Locked-In Syndrome !!!
(…Under notable cases!)
Jean-Dominique Bauby
Parisian journalist Jean-Dominique Bauby suffered a stroke in December 1995, and, when he awoke 20 days later, he found his body was almost completely paralyzed; he could control only his left eyelid. By blinking this eye, he slowly dictated one alphabetic character at a time and, in so doing, was able over a great deal of time to write his memoir, The Diving Bell and the Butterfly. Three days after it was published in March 1997, Bauby died of pneumonia. The 2007 film The Diving Bell and the Butterfly is a screen adaptation of Bauby’s memoir. Jean-Dominique was instrumental in forming the Association du Locked-In Syndrome (ALIS) in France.
Kate Allatt
Kate Allatt is a mother-of-three from Sheffield, South Yorkshire. She has successfully recovered from locked-in syndrome. Now she runs Fighting Strokes, and devotes her life to assisting those with locked-in syndrome.
Julia Tavalaro
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 the Los Angeles Times published her life story. It was republished by Newsday on Long Island and in other newspapers across the country. She died in 2003 at the age of 68.
Rom Houben
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. He was initially reported as communicating by typing into a keyboard with his right hand, though the presence of a facilitator to move his hand attracted sharp criticism and strong doubts that Houben’s communications were authentic.
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. 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.
Rabbi Ronnie Cahana
In the summer of 2011, Rabbi Ronnie Cahana of congregational Rabbi in Montreal suffered a severe brainstem stroke that left him locked-in state, able to communicate only with his eyes. With the help of his family he continued to write poems and sermons for his congregation, letter by letter, through blinking. He has since regained his ability to breathe by himself and speak with his mouth. He describes his experiences as a blessing and a spiritual revelation of body and mind. He is son of painter Alice Lok Cahana.
Graham Miles
In 1993, Graham Miles, originally from Sanderstead, London Borough of Croydon, suffered a stroke after which he could not move any part of his body except his eyes. His condition improved gradually, to the point that in 2010 he was able to walk with two sticks and drive a car.
Christine Waddell
Christine Waddell is Britain’s longest survivor of locked-in syndrome, leaving her in a state of constant paralysis, but awareness. At the age of 26 in April 1997, she fell in her bathroom. She tried to get up but ultimately fell again and lay there for three days – until a colleague noticed her absence from work and her father broke into her flat. Seventeen months in the hospital followed before she moved in with her parents. After years of suffering she was given a grant for a computer which allows her to communicate. She is now able to use the internet and to communicate with old friends and others who have locked-in syndrome. She also listens to music and audiobooks, is able to swallow melted chocolate and sometimes has occasional vodka via her feeding tube. She misses most the ability to talk and regrets being unable to eat burgers.
Tony Quan AKA Tempt One
Tony Quan, a popular graffiti artist, was diagnosed with the nerve disorder ALS in 2003 eventually leaving 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.
Erik Ramsey
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. Erik 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, Erik is only able to communicate short and basic sounds. However, doctors believe, within a few years, Erik will be able to use this system to communicate words and phrases, and eventually, to “talk” normally.
Tony Nicklinson
Tony Nicklinson, of Melksham, Wiltshire, England, was left paralysed after suffering a stroke in June 2005, at age 51. In the years that followed, he started a legal battle for a right to assisted death. On 16 August 2012, his request was turned down by the High Court of Justice. On learning the outcome of his appeal, he refused to eat, contracted pneumonia, deteriorated rapidly and died a week later on 22 August 2012, aged 58.
Gary Parkinson
In 2010, ex-Premiership footballer Gary Parkinson suffered a massive stroke and was later diagnosed with locked-in syndrome. 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.
Lynsey Cribbin
Lynsey Cribbin from Cavan, Ireland, woke up with several headaches in January 2012. She suffered multiple strokes which left her on life support and eventually with one of the most severe cases of locked-in syndrome. Her brain works but she cannot move.
Elias Musiris
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, with training from neurological researcher Niels Birbaumer he learned to use an EEG brain-machine interface to answer yes-or-no questions and spell his name.
Stephen Hawking
Stephen William Hawking has a motor neuron disease related to amyotrophic lateral sclerosis (ALS), a condition that has progressed over the years. He is almost entirely paralysed and communicates through a speech generating device. Since 2005, as the disease progressed, he began to control his communication device with movements of his cheek muscles, with a rate of about one word per minute. Hawking is collaborating with researchers on systems that could translate Hawking’s brain patterns or facial expressions into switch activations.
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