The fight against brain disease: Widow discusses Robin Williams’ death

Susan Williams

In a compelling first-person account of beloved Bay Area comedian Robin William’s final days, his widow is spreading awareness about the dire consequences of degenerative brain diseases like the little-known Lewy body dementia.

Susan Schneider Williams visited Foster City Thursday, Feb. 9, to give a special presentation she hopes will help educate anyone who is affected by brain disease and inspire dedication to searching for a cure.

In late 2014, her husband committed suicide shortly after experiencing a rash of strange symptoms and being diagnosed with Parkinson’s disease. It wasn’t until after his autopsy it was revealed he was also suffering from an acute case of Lewy body dementia, or LBD. The discovery drove her into researching the dementia to which she now attributes her husband’s untimely death.

“Robin and I experienced this together and we experienced the symptoms. Then he left, he had to leave. And I’m here on the backside looking at it. I get the opportunity to look at the science of what he and I just experienced. So for that, I’m doing this,” Williams said. “It’s for us and for anybody who’s suffering already or who will be.”

The cause of LBD is unknown but it’s a neurodegenerative disorder that involves a mutation or buildup of a typically normal protein in the brain. Affecting 1.4 million people in the United States, it is one of the most common forms of dementia after Alzheimer’s disease and there is no cure, Williams said.

An artist and the daughter of a pathologist, Williams is channeling her experience into educating those with a loved one affected by brain disease. She also hopes to enthuse scientists and the research community to focus on finding a cure.

She’s able to traverse the discussion from purely scientific terms to sharing her own firsthand experience of watching the man she loved slip away. In September 2016, Williams wrote an essay for the Journal of the American Academy of Neurology titled “the terrorist inside my husband’s brain.”

Williams drew from the essay during Thursday’s presentation at Foster City’s Atria Senior Living titled “The Unchosen Path: Walking with Dementia.”

“The unchosen path, I certainly did not choose this, Robin didn’t choose it, no one chooses brain disease. But like so many things in life, when you gain experience by a certain journey, it’s human nature to want to pass on what you learned,” Williams said.

It began in 2013 when Robin began experiencing strange and seemingly unrelated symptoms, from a poor sense of smell to a slight tremor in his left hand. In the coming months, he was conscious of his developing more acute psychological and memory issues, she recalled.

“Alzheimer’s patients are not aware of their disintegration. This is one of the most terrifying things of LBD, especially for someone as brilliant as Robin, you are intently aware of your disintegration,” Williams said.

Looking back, she recalled how his being put on antipsychotics for a period was detrimental as people with LBD have an adverse reaction. Diagnosing these types of disease can be difficult and Robin’s situation was exacerbated by the fact he had a prior history of depression, she said. Eventually he was diagnosed with Parkinson’s, but she noted they both felt as though it was something more.

During a meeting with a neurologist, she said Robin questioned whether he had dementia or Alzheimer’s — the doctor replied no. Looking back, she wonders if her husband had been masking some of the symptoms.

Although he continued to take good care of himself, the disease was unyielding. She notes the wide array of LBD symptoms can come on sporadically, sometimes changing within minutes.

“He and I knew there had to be something bigger going on, it was just such a complex and difficult adversary. One of the hallmarks of LBD is its symptoms can come on at random and as soon as you think they’re figuring something out, it disappears and then something else pops up,” she said.

She now recounts the final months before he committed suicide in their Bay Area home Aug. 11, 2014, with the hindsight he had LBD.

An autopsy released several months later provided further explanation into the world in which his brain had deteriorated, she said.

LBD “was everywhere in Robin’s brain, it was one of the worst cases they’ve ever seen. It was in the brain stem,” Williams said. “That was the cause of death.”

Clinically, Robin had Parkinson’s but pathologically, it was LBD that took his life, she explained.

Ultimately, Williams hopes sharing her story will be a benefit to others — whether it’s a caretaker unsure of a why a loved one is struggling, or a person who may be experiencing brain disease themselves.

She cited history and how a surge of interest behind studying cancers ultimately helped find a cure for some. Now, she hopes to help galvanize momentum behind addressing the fact that 47 million people worldwide are living with dementia — a rate that’s anticipated to double in the next 20 years.

“It feels like a race, it feels like a war, and hopefully we’ll start getting cures and preventions while we still have some of these amazing people,” Williams said. “I think part of what makes these journeys so painful is that we don’t have the answers yet. And it’s just better to admit we don’t have the answers, that goes for doctors and caregivers; then we realize the disease is the enemy.”

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