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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.
Daniela Gazzano (born 1966 in Albenga, Italy). Five hours after the birth of her daughter in August 2005 she had a cerebral hemorrhage in the pons of the brainstem. The diagnosis of a vegetative state lasts 6 months but Daniela had been conscious since September 2005. It was her husband who realized that she was awake in March 2006, creating a fast and rapid communication method which today is also used in some Italian hospitals. Unfortunately, her lack of pupil fixation does not allow her to use optical pointers. She actually lives in Bra,_Piedmont at home with her family. In 2018 she published her book of fairy tales written with 116093 eyes blink "The magical stories of the enchanted clearing" that became a teather piece in 2023 in the city of Calizzano . She is the founder of not for profit association "Gli amici di Daniela APS" to help people with locked in syndrome and their families.On you tube association channel you can watch how she communicates with family and friends.
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 CT) 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 a 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 unique 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 can't speak, but 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. The 58 year old 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 currently works as a freelance web designer/developer and has published a book about his life entitled Ghost Boy. [18] [19] [20]
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. [21] [22]
The character of M. Noirtier de Villefort in Alexandre Dumas' novel The Count of Monte Cristo (1844) apparently has locked-in syndrome. He is described as a "corpse with living eyes", who communicates with eye movements and expressions. His granddaughter Valentine helps him form sentences by reciting the alphabet and scanning dictionary pages with her finger until he indicates which letters and words he wants.
In the first novel A Game of Thrones , the character Khal Drogo enters into a vegetative state after suffering sepsis countered by blood magic, resulting in complete paralysis. Though he is able to move his eyes along the orbit of the sun, he is implied to be blind and only able to sense it because of the heat. His wife, Daenerys, ultimately suffocates him out of pity.
In Émile Zola's novel Thérèse Raquin (1867), Thérèse Raquin and her second husband Laurent accidentally reveal to Thérèse's aunt, Madame Raquin (who has locked-in syndrome after a stroke), that they have murdered Camille Raquin (Madame Raquin's son). One day, when some friends are over, Madame Raquin eventually musters an enormous amount of strength to move her finger on a table, tracing words that would reveal Thérèse and Laurent's deed. However, she is interrupted, and her words are misinterpreted as "Thérèse and Laurent have taken good care of me".
Johnny Got His Gun (1938) is a novel by American author and screenwriter Dalton Trumbo, which describes a young American soldier who loses both his arms, his legs, and his face in World War I. This novel portrays "how it might feel to be totally locked-in", but it is not a true case of "locked-in syndrome", according to the WHO definition. Johnny attempts to communicate with the outside world using Morse code through banging his head on his pillow and weakly chanting (in his mind) "SOS Help me".
The character of Jean-Louis Martin in Bernard Werber's sci-fi novel L'Ultime Secret (2001), [23] has locked-in syndrome after being paralyzed in a car accident. Able at first only communicate by blinking – once for "Yes" and twice for "No" – with the use of high tech, he eventually gains control not only over his own mind, but those of others. [24]
Sharon McCone, the protagonist of Marcia Muller's suspense novel Locked In (2009), is the founder of a successful San Francisco detective agency. On returning to her office late one night, she is shot in the head. She wakes up in a hospital able to move only her eyes, forced to struggle to rehabilitate herself while finding the attacker. [25]
Mark Billingham's novel Sleepyhead (2013) [26] addresses a criminal who purposely manipulates pressure points on each victim's head and neck with the intention of inducing locked-in syndrome. [27]
The book The Diving Bell and the Butterfly is a memoir by journalist Jean-Dominique Bauby. It describes what his life is like following a massive stroke that left him with locked-in syndrome. It also details what his life was like before the stroke. [28]
John Scalzi's science fiction police procedural Lock In is based on a society where large numbers have the locked-in-like Haden's Syndrome due to a pandemic, and are able to interact with the world through BCI-controlled bodies. [29]
In D. R. Merrill's 2014 science-fiction novel, the Alplai virologist and epidemiologist Gihuunak appears to have a form of locked-in syndrome, being confined to a motorized wheelchair and using a speech synthesizer to communicate. [30]
In season 6, episode 4 of The 100 , titled "The Face Behind the Glass", the main character (Clarke Griffin) is shot in the neck with a paralytic dart, resulting in a locked-in state in which she was able to move only her eyes voluntarily. [31]
In season 1, episode 7 of Alfred Hitchcock Presents , titled "Breakdown" (November 13, 1955, on CBS), [32] the sole survivor of a violent collision (Joseph Cotten) finds himself in a locked-in state, unable even to move an eyelid. The viewer experiences the victim's point of view, "hearing" his thoughts and feelings as they run from shock to anger to frustration to the realization that he may be put in his grave alive. [33]
Hector Salamanca, a character on Breaking Bad and Better Call Saul , was left paralyzed after having a stroke. Initially unable to move any part of his body, he later gained use of his right index finger and rang a bell attached to his wheelchair to communicate. [34]
In the Criminal Minds episode "The Uncanny Valley", the unsub Samantha Malcolm induces locked-in syndrome using a series of drugs in three women. Her reason is she is trying to complete a series of dolls she lost as a young girl. Every two months, a woman will die as the stress wreaks havoc on the body. Only one woman, who has diabetes, is able to counteract the drugs and fight off her locked-in syndrome. The episode "To Bear Witness" also uses locked-in syndrome; in it a man falls into locked-in syndrome after surviving a botched lobotomy and communicates to Derek (Shemar Moore) through blinks. [35]
The CSI: NY episode "Blink" presented an instance of locked-in syndrome wherein a woman (portrayed by Jewel Christian) was sedated by the killer, who applied pressure to certain points on her head, resulting in her paralysis. The killer's previous attempts resulted in his victims' dying.
In the Forever episode "The Last Death of Henry Morgan," Henry confronts his immortal stalker, Adam, and lures Adam close enough to plunge a needle into his neck and inject a full syringe of air. We later see Adam now has Locked-In Syndrome from an air embolism to his brainstem. The scene is from Adam's point of view, the image out of focus and voices mildly distorted. The doctor tells Henry Adam's condition could last a lifetime - the only way to stop Adam killing mortals and tormenting Henry will be to keep him alive in this state.
The House M.D. episode "Locked In" presented a case of locked-in syndrome, which later turned into a case of total locked-in syndrome; the patient was portrayed by Mos Def. [36]
In the Scrubs episode "His Story III", a patient (played by Henry LeBlanc) is presented with locked-in syndrome.
In the Star Trek episode "The Menagerie", Star Fleet captain Christopher Pike (played by Jeffrey Hunter when healthy, and Sean Kenney when injured) is severely burned, completely paralyzed, and can communicate only by brain waves; he can operate an electrical wheelchair and can answer yes/no questions by "one flash for yes, two flashes for no". This episode aired in November 1966; the first actual such interface was done by Fetz at the University of Washington in 1969, as noted in brain–computer interface.
On the TED Talk website a talk was posted about the story of one family's journey with a brainstem stroke called "My Father, Locked-in his Body but Soaring Free". [37] Another talk was given about graffiti artist TEMPT and the open source eye tracking device that was developed for him by his friends: "The Invention That Unlocked A Locked In Artist". [38]
In Calvary Dr. Frank Harte (Aidan Gillen) tells Father James (Brendan Gleeson) a story about a small child rendered deaf, mute, paralyzed and blind after botched anaesthesia, and contemplates the ineffable terror of such sensory isolation.
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 derived by 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 alternatively used, as "vegetative state" has some negative connotations among the public.
Lateral medullary syndrome is a neurological disorder causing a range of symptoms due to ischemia in the lateral part of the medulla oblongata in the brainstem. The ischemia is a result of a blockage most commonly in the vertebral artery or the posterior inferior cerebellar artery. Lateral medullary syndrome is also called Wallenberg's syndrome, posterior inferior cerebellar artery (PICA) syndrome and vertebral artery syndrome.
Thérèse Raquin is an 1868 novel by French writer Émile Zola, first published in serial form in the literary magazine L'Artiste in 1867. It was Zola's third novel, though the first to earn wide fame. The novel's adultery and murder were considered scandalous and famously described as "putrid" in a review in the newspaper Le Figaro.
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.
Akinetic mutism is a medical condition where patients tend neither to move (akinesia) nor speak (mutism). Akinetic mutism was first described in 1941 as a mental state where patients lack the ability to move or speak. However, their eyes may follow their observer or be diverted by sound. Patients lack most motor functions such as speech, facial expressions, and gestures, but demonstrate apparent alertness. They exhibit reduced activity and slowness, and can speak in whispered monosyllables. Patients often show visual fixation on their examiner, move their eyes in response to an auditory stimulus, or move after often repeated commands. Patients with akinetic mutism are not paralyzed, but lack the will to move. Many patients describe that as soon as they "will" or attempt a movement, a "counter-will" or "resistance" rises up to meet them.
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.
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 of the same name, 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.
"4-D" is the fourth episode of the ninth season and the 186th episode overall of the American science fiction television series The X-Files. The episode first aired in the United States on December 9, 2001, on the Fox network. It was written by Steven Maeda and directed by Tony Wharmby. The episode is a "monster-of-the-week" episode, a stand-alone plot which is unconnected to the mythology, or overarching fictional history, of The X-Files. The episode earned a Nielsen rating of 5.1 and was viewed by 5.38 million households. It received mixed to positive reviews from television critics.
"Locked In" is the nineteenth episode of the fifth season of House. It aired 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.