From Loss to Leadership: How Robin Williams’ Widow Found Answers—and a Board Seat

Susan Schneider Williams, who helped her husband through a difficult final year, has spent much time after his 2014 death looking for answers and a support system. She found both with the help of the American Academy of Neurology and the American Brain Foundation, where she now sits on the board.

The world lost Robin Williams in 2014, but his widow, Susan Schneider Williams, saw the effects of the famed comic’s diminishing mental state up close for some time before his death.

And in the two years since he died, Schneider Williams has lent her voice to the chorus of those calling for a better understanding of the effects of brain disease, specifically Lewy body dementia (LBD), a condition that Robin Williams suffered from but wasn’t properly diagnosed until after his death. The disease is widely underdiagnosed.

Recently, Schneider Williams has taken active steps in the association and nonprofit space: She recently joined the board of the American Brain Foundation and worked with that group to write a first-person essay about her husband’s final year.

The essay, “The Terrorist Inside My Husband’s Brain,” became a major online discussion point when it appeared last month in the journal Neurology, published by the American Academy of Neurology. She recounts how Williams struggled with a diagnosis for his disease, which presented itself with a series of seemingly unrelated symptoms. His physical and mental state quickly deteriorated, even after a diagnosis of Parkinson’s disease, which Williams questioned.

Among the difficult challenges Williams faced was a panic attack that prevented him from remembering his lines while filming the movie Night at the Museum 3. Schneider Williams later learned that the antipsychotic medication her husband was taking to treat his anxiety may have made things worse.

“Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD,” she wrote. “Also, Robin had a high sensitivity to medications, and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.”

While Schneider Williams emphasized that she and her husband found moments of joy in his last year, the disease ultimately led to his death by suicide.

Nonprofit Connection

Since then, she has spent considerable time researching the brain to get a specific grasp on how Lewy bodies affected her husband’s brain cells. Her search for answers led her to the world of nonprofits.

“The journey Robin and I were on together has led me to knowing the American Academy of Neurology and other groups and doctors,” she wrote. “It has led me to discover the American Brain Foundation, where I now serve on the board of directors.”

Another foundation board member has dealt with a situation similar to Schneider Williams’. The honorary chair of the board, former vice president Walter Mondale, lost his wife to Lewy body disease in 2014. He also lost a daughter to brain cancer in 2011.

Mondale praised Schneider Williams for using her personal loss as an opportunity to get involved and speak up for others.

“I would say leadership begins with the idea that you have a responsibility to do something about a problem,” Mondale said in a news release. “As we seek these dreadfully difficult answers at the American Brain Foundation, I think there is great hope that we have wonderfully committed people, like Susan, in our quest for a cure.”

Susan Schneider Williams, shown with her late husband Robin Williams. (via the American Brain Foundation's Facebook page)

Ernie Smith

By Ernie Smith

Ernie Smith is a former senior editor for Associations Now. MORE

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