Written for the journal of the American Academy of Neurology, “The Terrorist Inside My Husband’s Brain” details the Oscar-winning comedian’s private, undiagnosed struggle with a form of dementia called Lewy body disease.
Schneider Williams describes in detail the toll the disease took on him, with the symptoms ranging from insomnia to tremors, anxiety, digestive problems, significant memory loss and paranoia.
Robin Williams: A career in pictures
Robin Williams: A career in pictures
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1980: Robin Williams in the world-famous Mork and Mindy series that launched his career.
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1984: Williams in 'Moscow On The Hudson'. The actor earned his first Golden Globe nomination for his turn as a Russian circus performer in this 1984 hit.
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1987: Williams in the critically acclaimed 'Good Morning, Vietnam'. Williams ad-libbed all the radio broadcast scenes from this 1987 film about a radio DJ sent to Vietnam to entertain the US troops serving out there.
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1989: Robin Williams appeared with Robert Sean Leonard and Josh Charles in 'Dead Poets Society' as English teacher John Keating - or the “slightly more daring O Captain, My Captain”.
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1990: Williams and Robert De Niro in Awakenings, an emotional film that saw Williams portray a British neurologist who administered a drug to catatonic patients that briefly awoke them from decades of catatonia.
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1991: Williams appeared as an adult Peter Pan forced to return to Neverland to rescue his children in 'Hook'. The film received mixed reviews but proved popular at the box office.
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1992: Williams in 'Toys'. The film followed a military general after he inherits a toy factory and decides to produce war toys.
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1993: Williams appeared in one of his best-loved roles in Mrs Doubtfire, where he played an actor disguising himself as a female housekeeper in order to spend more time with his children.
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1995: Williams appeared as man released from a board game after being trapped for decades inside it in the blockbuster 'Jumanji'.
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1996: Williams starred opposite Jennifer Lopez in 'Jack', a film about a young boy who ages four times faster than other children.
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1997: Williams appeared alongside Matt Damon in 'Good Will Hunting', a film that won him an Oscar for his portrayal of psychologist Sean Maguire. As he accepted his award, a touched Williams warned the audience: "Oh man, this might be the one time I’m speechless".
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1997: The box-office hit Flubber saw Williams take the role of Professor Philip Brainard, who creates the unstoppable green goo Flubber in his bid to produce a new energy source.
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1998: Williams gave a poignant turn as Dr Hunter 'Patch' Adams, an unqualified doctor who treats patients with laughter in 'Patch Adams' .
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1998: Williams stars alongside Cuba Gooding, Jr in 'What Dreams May Come', a film that follows American physician Chris Nielsen's journey through the afterlife after he is killed in a car crash.
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1999: Robin Williams, Bob Balaban (left), and Armin Mueller-Stahl star in the movie 'Jakob the Liar' about a Jewish shopkeeper who uses his imagination to engender hope throughout a Polish ghetto in 1944.
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1999: American Science Fiction drama 'Bicentennial Man' followed an android (Williams) as he experiences emotions and becomes more human
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2002: Williams took a more sinister role as reclusive crime writer and murderer Walter Finch in 'Insomnia'.
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2002: Williams undertook an unsettling, psychopathic role in One Hour Photo, where he played a photo lab technician obsessed with a family who frequented the store.
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2002: Williams starred alongside Danny DeVito in 'Death to Smoochy', a film about a corrupt children's television host disgraced by an FBI sting.
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2005: Robin Williams stars in 'The Big White', a film about a financially struggling travel agent trying to make a bogus life insurance claim in order to pay for his wife's Tourette treatment.
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2006: Williams and Ben Stiller star in 'Night at the Museum'. Williams will appear in upcoming film "Night at the Museum: Secret of the Tomb," playing the statue of Teddy Roosevelt who comes to life at night.
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2006: Robin Williams, Jeff Daniels and Cheryl Hines star in roadtrip comedy 'R.V.', which followed the tribulations of a dysfunctional family.
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2006: Williams took the leading role in the political comedy drama 'Man of the Year' about a comedian who decides to run for President and finds himself mistakenly elected.
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2007: Robin Williams and Freddie Highmore in 'August Rush', where Williams played a homeless musician who teaches children living on the streets music and employs them as performers.
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2007: Robin Williams, Mandy Moore and John Krasinski starred in 'License to Wed'. Williams played a reverend who places a couple through a series of tests to see if they should marry in his church. The rom-com was poorly received by critics.
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2010: Robin Williams and John Travolta star in 'Old Dogs', a comedy that sees two friends and owners of a sports marketing firm struggle to deal with seven-year-old twins placed in their care. The film was nominated for four Golden Raspberry Awards.
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2013: Susan Sarandon, Robert De Niro and Robin Williams star in The Big Wedding
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2013: Williams starred as President Eisenhower in Lee Daniels' 'The Butler'.
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2014: Robin Williams with his Mork and Mindy co-star Pam Dawber in The Crazy Ones series. It was axed after one season.
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2014: Rob Williams stars in 'The Angriest Man in Brooklyn', the story of a bad-tempered man mistakenly told he has 90 minutes to live.
“This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others,” Schneider Williams writes.
“As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease.”
Schneider Williams did not learn her husband had been living with LBD until three months after his death when the coroner’s report was released. All four of the doctors she has consulted in the aftermath of his death have said it was one of the worst pathologies of the disease they had ever witnessed.
“Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala,” she explains in the letter. “This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”
According to Schneider Williams, Williams struggled to memorise single lines while filming Night at the Museum 3, even though three years earlier, he memorised hundreds of lines for the Broadway production Bengal Tiger at the Baghdad Zoo and delivered impeccable performances.
“Robin was losing his mind and he was aware of it,” Schneider Williams reflects. “Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it – no amount of intelligence or love could hold it back”.
“Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him? He kept saying, ‘I just want to reboot my brain’.”
Williams was later diagnosed with Parkison’s disease but that did not help to answer many unanswered questions floating around his head.
While Williams never told his wife he was experiencing hallucinations, a key symptom of LBD, after he died a doctor later informed Schnieder he was likely to have suffered from hallucinations but just chose to remain quiet.
In a later passage, Schneider Williams recounts her final day with Williams and the hope she felt that he might in fact be getting better. “We did all the things we love on Saturday day and into the evening, it was perfect – like one long date,” writes Schneider Williams. “By the end of Sunday, I was feeling that he was getting better. When we retired for sleep, in our customary way, my husband said to me, ‘Goodnight, my love,’ and waited for my familiar reply: ‘Goodnight, my love.’ His words still echo through my heart today. Monday, 11 August, Robin was gone.”
Williams was found dead in his bedroom at his home in Tiburon in northern California in August 2014.
Since his tragic death, Schneider Williams has campaigned to raise awareness about LBD, a difficult-to-diagnose condition which is thought to potentially account for around 10-15 per cent of all cases of dementia.Reuse content