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Robin Williams’ widow has penned a personal essay in a scientific journal detailing her late husband’s intense struggle with a variety of neurological and physiological symptoms in the lead-up to his suicide in 2014.
Describing the weeks before his death as “tragic and heartbreaking,” Susan Schneider Williams chronicles the couple’s battle to arrive at a proper diagnosis.
“Robin was losing his mind and he was aware of it,” Williams writes in the journal of the American Academy of Neurology, in an article published Tuesday. “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.”
Williams continues: “[Robin] kept saying, ‘I just want to reboot my brain.’ Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes. A brain scan was done, looking for a possible tumor on his pituitary gland, and his cardiologist rechecked his heart. Everything came back negative, except for high cortisol levels. We wanted to be happy about all the negative test results, but Robin and I both had a deep sense that something was terribly wrong.
“On May 28th, he was diagnosed with Parkinson disease,” she goes on. “We had an answer. My heart swelled with hope. But somehow I knew Robin was not buying it.”
It wouldn’t be until the results of the autopsy came in that Susan Schneider Williams would have a diagnosis she felt confident in: a little-known but deadly disorder known as Lewy Body Disease, a type of degenerative dementia closely associated with Parkinson’s disease.
“This likely caused the acute paranoia and out-of-character emotional responses he was having,” Williams writes. “How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”
Williams hanged himself on Aug. 11, 2014, at his home in Paradise Cay, Calif., dying from asphyxiation, an autopsy report concluded. He and his third wife Susan Schneider Williams were married in 2011.
Williams ends her essay with an appeal to the neurological community, earlier reported on by Stat News.
“Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom,” she writes. “It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain.”
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