Robin Williams’ Widow Speaks About His Secret Battle With Lewy Body Dementia

“…this disease was faster than us and bigger than us. We would have gotten there eventually.” – Susan Williams. Robin Williams passed away in August, 2014. (Photo: Getty Images)

When Robin Williams passed away last year, it was widely reported that his suicide was caused by depression. While his battle with mental health was a factor, his widow, Susan Williams, tells People magazine in a new interview, the larger driver was his fight against what was later discovered to be Lewy body dementia (also known as Dementia with Lewy bodies), an aggressive and debilitating brain disease named for Lewy body protein deposits that develop in nerves in brain regions associated with thinking, memory, and movement. "It was not depression that killed Robin,” Susan explained. “Depression was one of let’s call it 50 symptoms and it was a small one.“

Lewy body dementia may be unfamiliar, but it’s not rare — it’s the second most common type of progressive dementia after Alzheimer’s, according to the Mayo Clinic, and it causes a progressive decline in mental abilities. This can include hallucinations, which may cause strange behavior, as well as drowsiness and attention loss. It can also manifest physically, causing muscle rigidity, slow movement, and tremors.

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If it sounds complex and similar to other degenerative diseases (specifically, Parkinson’s), it’s because it is. That’s what makes it so difficult to detect and understand. “[Symptoms] present themselves like a pinball machine,” Susan told People. “You don’t know exactly what you’re looking at.”

In the months leading up to his death, Susan explained, Williams began to experience anxiety attacks, muscle rigidity, and depth perception problems. But the symptoms were so scattered — and fast-moving — his doctors were unable to diagnose him until after his suicide, when the autopsy was performed. His battle with losing his mind to a mystery disease pushed him over the edge, Susan told People.

“I know now the doctors, the whole team was doing exactly the right things,” Susan told People. “It’s just that this disease was faster than us and bigger than us. We would have gotten there eventually.”

"I’ve spent this last year trying to find out what killed Robin. To understand what we were fighting, what we were in the trenches fighting and one of the doctors said, ‘Robin was very aware that he was losing his mind and there was nothing he could do about it,'” she said.

Now, she’s using his public struggle to help educate others about the mysterious disease. "This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it,” adds Susan. “Because we didn’t know. He didn’t know.”

Filmmaker Max Lugavere is working on a documentary called Bread Head that explores the relationship between lifestyle factors and brain health. Here he gives a quick primer on Lewy body dementia based on his research and interviews with neurodegenerative disease experts.

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