Robin Williams’ Widow Writes A Devastating Account Of His Final Year

Susan Schneider Williams, Robin Williams’ widow, wrote a devastating account of her husband’s final year of life before he died by suicide in 2014.

An autopsy revealed that Robin Williams had Lewy body disease, an umbrella term used to describe both Parkinson’s disease dementia and dementia with Lewy bodies. In a letter this week addressed to neurologists, Susan described the “terrorist” who lived inside her husband’s brain and caused him to forget his movie lines, plagued him with delusions and paranoia, and engulfed him in fear, anxiety and depression.

Her account of his medical journey illustrates just how difficult it is for a typical Lewy body disease patient to get properly diagnosed, how prescribed medicines for misdiagnosed conditions may have exacerbated his symptoms, and how patients who are properly diagnosed have no cure for their disease.

“I am not convinced that the knowledge would have done much more than prolong Robin’s agony,” she wrote. “Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.”

Physical symptoms lead to cognitive problems 

Susan begins her letter describing the fall of 2013. By then, Robin was already seeing a doctor to cope with physical symptoms like a tremor in his left hand, constipation, heartburn, insomnia and a poor sense of smell. Then, one weekend in late October, she observed that his fear and anxiety had “skyrocketed” to alarming levels, beyond his usual stress.

By winter of that year, Robin was having problems with paranoia, delusions, insomnia, memory and high levels of the stress hormone cortisol. He sought psychotherapy to help him cope with his fear and anxiety.

In April 2014, he had a panic attack while filming “Night at the Museum 3.” During filming, he struggled to memorize his lines ? unusual for the Juilliard-trained actor ? and his doctor prescribed antipsychotic medications.

Susan would later find out, months after her husband’s death, that antipsychotics can cause severe reactions in people with LBD, and in some cases even worsen their cognitive and physical symptoms. 

Finally in May, doctors diagnosed Robin Williams with Parkinson’s disease, which would explain physical symptoms like his hand tremor and difficulty moving. While the diagnosis proved comforting for a while, Susan writes that Robin sensed something was still deeply wrong ? specifically with his brain and his cognitive behavior.

“I just want to reboot my brain,” he said on one occasion. “Do I have Alzheimer’s? Dementia? Am I schizophrenic?” he asked on another.