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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.
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 [1] 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. [2]
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. [3] He was instrumental in forming the Association du Locked in Syndrome (ALIS) in France. [4]
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. [5] [6]
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. [7] He was initially reported as communicating by typing into a keyboard with his right hand, [8] though the presence of a facilitator to move his hand attracted sharp criticism and strong doubts that Houben's communications were authentic. [9] [10] [11]
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. [12] 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. [7] [13]
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. [14] 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. [15]
In 2010, former Premiership footballer Gary Parkinson had a massive stroke and was later diagnosed with locked-in syndrome. [16] 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. [17]
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. [18] [19] [20]
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. [21] [22]
An arteriovenous malformation (AVM) is an abnormal connection between arteries and veins, bypassing the capillary system. Usually congenital, this vascular anomaly is widely known because of its occurrence in the central nervous system, but can appear anywhere in the body. The symptoms of AVMs can range from none at all to intense pain or bleeding, and they can lead to other serious medical problems.
A coma is a deep state of prolonged unconsciousness in which a person cannot be awakened, fails to respond normally to painful stimuli, light, or sound, lacks a normal wake-sleep cycle and does not initiate voluntary actions. The person may experience respiratory and circulatory problems due to the body's inability to maintain normal bodily functions. People in a coma often require extensive medical care to maintain their health and prevent complications such as pneumonia or blood clots. Coma patients exhibit a complete absence of wakefulness and are unable to consciously feel, speak or move. Comas can be the result of natural causes, or can be medically induced.
Locked-in syndrome (LIS), also known as pseudocoma, is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking. The individual is conscious and sufficiently intact cognitively to be able to communicate with eye movements. Electroencephalography results are normal in locked-in syndrome. Total locked-in syndrome, or completely locked-in state (CLIS), is a version of locked-in syndrome wherein the eyes are paralyzed as well. Fred Plum and Jerome B. Posner coined the term for this disorder in 1966.
A vegetative state (VS) or post-coma unresponsiveness (PCU) is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness. After four weeks in a vegetative state, the patient is classified as being in a persistent vegetative state (PVS). This diagnosis is classified as a permanent vegetative state some months after a non-traumatic brain injury or one year after a traumatic injury. The term unresponsive wakefulness syndrome may be used alternatively, as "vegetative state" has some negative connotations among the public.
Jean-Dominique Bauby was a French journalist, author and editor of the French fashion magazine Elle.
A minimally conscious state or MCS is a disorder of consciousness distinct from persistent vegetative state and locked-in syndrome. Unlike persistent vegetative state, patients with MCS have partial preservation of conscious awareness. MCS is a relatively new category of disorders of consciousness. The natural history and longer term outcome of MCS have not yet been thoroughly studied. The prevalence of MCS was estimated to be 9 times of PVS cases, or between 112,000 and 280,000 in the US by year 2000.
The Diving Bell and the Butterfly is a memoir by journalist Jean-Dominique Bauby. It describes his life before and after a massive stroke left him with locked-in syndrome.
Franklin D. Roosevelt, later the 32nd president of the United States from 1933 to 1945, began experiencing symptoms of a paralytic illness in 1921 when he was 39 years old. His main symptoms were fevers; symmetric, ascending paralysis; facial paralysis; bowel and bladder dysfunction; numbness and hyperesthesia; and a descending pattern of recovery. He was diagnosed with poliomyelitis and underwent years of therapy, including hydrotherapy at Warm Springs, Georgia. Roosevelt remained paralyzed from the waist down and relied on a wheelchair and leg braces for mobility, which he took efforts to conceal in public. In 1938, he founded the National Foundation for Infantile Paralysis, leading to the development of polio vaccines. Although historical accounts continue to refer to Roosevelt's case as polio, the diagnosis has been questioned in the context of modern medical science, with a competing diagnosis of Guillain–Barré syndrome proposed by some authors.
Oscar Leonard Carl Pistorius is a South African former professional sprinter and convicted murderer. He was first convicted of culpable homicide of his then-girlfriend, which was subsequently upgraded to murder upon appeal. Both of his feet were amputated when he was 11 months old as a result of a congenital defect; he was born missing the outside of both feet and both fibulas. Pistorius ran in both nondisabled sprint events and in sprint events for below-knee amputees. He was the 10th athlete to compete at both the Paralympic Games and Olympic Games.
Mathieu Amalric is a French actor and filmmaker. He has won several César Awards and the Lumières Award.
The Diving Bell and the Butterfly is a 2007 biographical drama film directed by Julian Schnabel and written by Ronald Harwood. Based on Jean-Dominique Bauby's 1997 memoir, the film depicts Bauby's life after suffering a massive stroke that left him with a condition known as locked-in syndrome. Bauby is played by Mathieu Amalric.
"Locked In" is the nineteenth episode of the fifth season of House. It aired on Fox on March 30, 2009. Large portions of the episode are shown from the perspective of the patient, who retains consciousness but lacks the ability to move. After discovering the patient in an emergency room while being treated for injuries related to a motorbike crash, House's team move the patient to Princeton Plainsboro and attempts to diagnose him. During the course of treatment, the team discovers several medically relevant secrets about the patient. Other plot points focus on Wilson's attempts to discover why House was in Middletown, New York when he crashed, Wilson's new relationship, and the resolution of Taub's resignation from the previous episode.
Steven Laureys is a Belgian neurologist. He is principally known as a clinician and researcher in the field of neurology of consciousness.
A brainstem stroke syndrome falls under the broader category of stroke syndromes, or specific symptoms caused by vascular injury to an area of brain. As the brainstem contains numerous cranial nuclei and white matter tracts, a stroke in this area can have a number of unique symptoms depending on the particular blood vessel that was injured and the group of cranial nerves and tracts that are no longer perfused. Symptoms of a brainstem stroke frequently include sudden vertigo and ataxia, with or without weakness. Brainstem stroke can also cause diplopia, slurred speech and decreased level of consciousness. A more serious outcome is locked-in syndrome.
Rom Houben is a Belgian man believed to be comatose and in a vegetative state for 23 years after a near-fatal automobile accident, who was diagnosed with locked-in syndrome in 2006.
Fred Plum was an American neurologist who developed the terms "persistent vegetative state" and "locked-in syndrome" as part of his continuing research on consciousness and comas and care of the comatose.
Lightwriters are a type of speech-generating device. The person who cannot speak types a message on the keyboard, and this message is displayed on two displays, one facing the user and a second outfacing display facing the communication partner or partners. A speech synthesiser is also used to provide speech output, and some models offer the facility to connect to a printer to provide printed output.
Disorders of consciousness are medical conditions that inhibit consciousness. Some define disorders of consciousness as any change from complete self-awareness to inhibited or absent self-awareness and arousal. This category generally includes minimally conscious state and persistent vegetative state, but sometimes also includes the less severe locked-in syndrome and more severe but rare chronic coma. Differential diagnosis of these disorders is an active area of biomedical research. Finally, brain death results in an irreversible disruption of consciousness. While other conditions may cause a moderate deterioration or transient interruption of consciousness, they are not included in this category.
Martin Pistorius is a South African man who had locked-in syndrome and was unable to move or communicate for 12 years.
Saimo Chahal KC (hon) is a British lawyer specialising in human rights. She was formerly joint head of the public law and human rights team at Bindmans LLP, in London.