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List of people with locked-in syndrome

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This is a list of notable people with locked-in syndrome, a syndrome where a patient is conscious and self-aware but is completely paralyzed.

Gil Avni

Israeli citizen Gil Avni, then 33, experienced complete locked-in syndrome (CLIS) at Meir Hospital, Kefar Sava, Israel, after experiencing an unknown health impacting incident at his home while watching TV. When Avni's wife, Orit, a nurse, arrived home, she found him bearing a pulse rate of about 160, making 50 breaths per minute, with symptoms of cyanosis, and called an ambulance. During transport, a dangerously low oxygen saturation of 50% was detected. When reaching the hospital, Avni was anesthetized and ventilated, later after a CT scan, he was diagnosed with cerebral edema. Avni, since arriving at the hospital, consciously experienced and remembered most if not all of his surroundings audio-visually, later auditory (with eye lids closed), including after anesthesia.

Avni remained in hospital in critical condition due to continuing low oxygen saturation and pulse rates now reaching 180-200. After almost two days, when his family had already given him a last goodbye, his sedatives were reduced. This allowed him to regain the ability for eye movement, later full body control. At the same time, his oxygen saturation returned to normal, and lung ventilation could finally be removed. He has since fully recovered - apart from PTSD stemming from this experience.

Avni remembered and reported most, if not all, the conversations taking place during the hospital period, both days and nights, and was able to precisely cite conversations, and people encountered. The documentary film 44 hours covers his experience in his own words, as well as the reactions of his wife and friends, and those treating him in hospital, some of whom are first confronted with details of what Gil Avni reports occurred during the hospital visit - and confirm it.

Jean-Dominique Bauby

French journalist Jean-Dominique Bauby had 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. Two days after the book was published in March 1997, Bauby died from pneumonia. He was instrumental in forming the Association du Locked in Syndrome (ALIS) in France.

Nick Chisholm

Nick Chisholm (born 1973 in Dunedin, New Zealand), the brother of Survivor NZ host Matt Chisholm, had a series of mini-strokes, culminating in a massive brainstem stroke during a rugby game at the age of 27 on 29 July 2000. He has since recovered some muscle usage, and has become a bodybuilder and a personal trainer for other disabled people. He cannot speak and communicates via pointedly moving his eyes around a clear plastic board with letters and number on it to spell out what he wants to say. On March 26, 2020, his wife Nicola gave birth to triplets, conceived with Nick via IVF.

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.

Tony Nicklinson

Tony Nicklinson was born on 2 April 1954. Nicklinson was a rugby union player and a successful civil engineer. At 58 years old he was paralyzed from the neck down after having 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 for 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. He 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.

See also: R (Nicklinson) v Ministry of Justice

Gary Parkinson

In 2010, former Premiership footballer Gary Parkinson had 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.

Martin Pistorius

Martin Pistorius began developing locked-in syndrome when he was 12 years old. He went into a coma for two to three 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 synthesizer, Pistorius works as a freelance web designer/developer and has published a book about his life entitled Ghost Boy.

Tony Quan

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

References

  1. "44h". Neue Celluloid Fabrik – Film Production and Documentaries. 2022-11-28. Retrieved 2024-02-13.
  2. "Gefangen im eigenen Körper - Dokumentation & Reportage - ARD" [ARD documentary: Trapped in your own body]. Das Erste (in German). Retrieved 2024-02-13.
  3. Robinson, Tasha (November 29, 2007). "The Diving Bell And The Butterfly". The A.V. Club. Retrieved November 22, 2018.
  4. "Association du Locked in Syndrome" (in French). FR. Retrieved November 22, 2018.
  5. Caldwell, Olivia (June 9, 2019). "A stroke on the rugby field left Nick Chisholm with the life-changing syndrome that would have killed most". Stuff.co.nz.
  6. Holden, Joanne (June 14, 2020). "Brother of Survivor NZ host Matt Chisholm's defies locked-in syndrome to become parent". Stuff.co.nz.
  7. ^ Connolly, Kate (November 23, 2009). "Trapped in his own body for 23 years – the coma victim who screamed unheard". The Guardian. UK. Retrieved November 22, 2018.
  8. Memmott, Mark (November 23, 2009). "For 23 Years Man Thought To Be In Coma Tried To 'Scream', And No One Heard". NPR. Retrieved November 22, 2018.
  9. Myers, PZ (November 24, 2009). "Really? This guy is conscious?". Pharyngula. Archived from the original on November 27, 2009. Retrieved November 22, 2018.
  10. Casert, Raf (November 25, 2009). "Comatose for 23 years, Belgian feels reborn". The Seattle Times. Retrieved November 22, 2018.
  11. Appel, Jacob M. (November 24, 2009). "The Rom Houben Tragedy And The Case For Active Euthanasia". The Huffington Post. Retrieved November 22, 2018.
  12. Dworschak, Manfred (February 13, 2010). "Communicating with Those Trapped within Their Brains". Der Spiegel. DE. Retrieved November 22, 2018.
  13. Schnakers, Caroline; Vanhaudenhuyse, Audrey; Giacino, Joseph; Ventura, Manfredi; Boly, Melanie; Majerus, Steve; Moonen, Gustave; Laureys, Steven (2009). "Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment". BMC Neurology. 9: 35. doi:10.1186/1471-2377-9-35. PMC 2718857. PMID 19622138.
  14. Gallagher, James (August 16, 2012). "Tony Nicklinson loses High Court right-to-die case". BBC News. Retrieved November 22, 2018.
  15. "Campaigners lose 'right to die' case". BBC News. July 25, 2014. Retrieved November 22, 2018.
  16. "Desperate fight for Pool coach". The Gazette. September 18, 2010. Retrieved November 22, 2018.
  17. "Middlesbrough hand Gary Parkinson role despite crippling condition". The Guardian. November 22, 2011. Retrieved November 22, 2018.
  18. Deveney, Catherine (July 17, 2011). "The Catherine Deveney Interview : Martin Pistorius : Ghost writer". Scotland on Sunday. Archived from the original on March 29, 2015. Retrieved November 22, 2018.(subscription required)
  19. "Martin Pistorius and Rebecca Grant". BBC Radio London. Retrieved November 22, 2018.
  20. Hager, Emily B. (July 26, 2012). "For Children Who Cannot Speak, a True Voice via Technology". The New York Times. Retrieved November 22, 2018.
  21. Golijan, Rosa (November 13, 2009). "EyeWriter Allows Man To Paint Despite Paralysis". Gizmodo.
  22. "EyeWriter: Physically Paralyzed Artist Draws Graffiti (on Buildings)". November 11, 2009. Archived from the original on July 4, 2017. Retrieved November 22, 2018.
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