Schneider describes in detail the toll the disease took on him, including insomnia, tremors, anxiety, digestive problems, significant memory loss and paranoia.
“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 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 did not learn Williams 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 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 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 in Williams` 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 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 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, August 11, Robin was gone.”
Williams was found dead in his bedroom at his home in Tiburon in northern California in August 2014.
Since his tragic suicide, Schneider 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.
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