Locked-in syndrome: Jean-Dominique Bauby

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Jean-Dominique Bauby (23 April 1952 – 9 March 1997) was a well-known French journalist, author and editor of the French fashion magazine ELLE. He had two children with Sylvie de la Rochefoucauld, a son named Theophile and a daughter named Celeste.

On 8 December 1995 at the age of 43, Bauby suffered a massive stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. Called locked-in syndrome, this is a condition wherein the mental faculties remain intact but most of the body is paralyzed. In Bauby’s case his mouth, arms, and legs were paralyzed, and he lost 60 pounds (27 kg) in the first 20 weeks after his stroke.

Despite his condition, he wrote the book The Diving Bell and the Butterfly by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again using a system called partner-assisted scanning. Bauby composed and edited the book entirely in his head, and dictated it one letter at a time. To make dictation more efficient, Bauby’s interlocutor, Claude Mendibil, listed the letters in accordance with their frequency in the French language. The book was published in France on 6 March 1997. Bauby died suddenly from pneumonia three days after the French publication of his book, and is buried in a family grave at the Père-Lachaise cemetery in Paris, France.

http://persvrijheid.pzc.wegenerwordpress.nl/englishengels/being-locked-in/

http://en.wikipedia.org/wiki/Jean-Dominique_Bauby

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