It was only after Robin Williams' August 2014 suicide that his widow, Susan Schneider Williams, learned what Lewy body dementia is—and that her late husband had it. An autopsy of his brain confirmed the diagnosis two months after his death, and CNN reports that in the 8 years since, Schneider Williams has become an advocate for LBD awareness and research. "I couldn't live with myself if I didn't tell this story," Schneider Williams says. In an interview, she explains how her husband's disease—misdiagnosed as Parkinson's several months before his death—took shape. A list of 40-plus symptoms is associated with Lewy body dementia, and among the first ones Williams began experiencing in 2012 were relentless fear and anxiety.
Then the paranoia set in. "It was the amygdala region of his brain that had a ginormous amount of the Lewy bodies," Schneider Williams says. "That area of the brain is really our ability to regulate our emotions, particularly fear and anxiety. And Robin's was basically broken." But when Lewy body "really [took] over," as she puts it, was when the delusional looping began. "Your brain is concocting a story of what you think reality is. And the people around you are unable to rationalize with you and bring you back into what is actually real. ... As a caregiver, you feel incredibly powerless when you realize, 'Oh my gosh, nothing I say or do anymore can bring him back to what's real.' And that's a very scary place."
The extreme insomnia was a factor, too, one that turned their home into something "like Night at the Museum at night," Schneider Williams says. It could take hours or even days to transition him from his delusion to reality. CNN notes Williams' misdiagnosis wasn't an uncommon one, as the two diseases share symptoms tied to movement issues. And as CNN reports, "Lewy body dementia and Parkinson's disease dementia are the two types of Lewy body dementias, which are the second most common form of dementia after Alzheimer's disease." (Read the full interview here.)
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