Every October, awareness campaigns turn the spotlight on a brain disease that hides in plain sight, and few families know its toll better than Susan Schneider Williams.
Her husband, Robin Williams, died in August 2014 at age 63. In the months before, the Oscar winner behind Good Will Hunting and Mrs. Doubtfire was battling symptoms no one could explain.
It started small at first, with insomnia, constipation and a fading sense of smell. Then came severe anxiety, tremors and trouble reasoning. He’d also swing back and forth between clear-headed moments and confusion.
While filming Night at the Museum: Secret of the Tomb in spring 2014, he had a panic attack and struggled to remember even a single line.
Doctors diagnosed him with Parkinson’s disease a few months before he died. The real answer only came afterward, when the coroner’s report revealed Lewy body dementia, a disease that attacks thinking, movement, mood and sleep.
When Susan later had four doctors review his records, she said they each told her it was one of the worst pathologies they had seen.
In 2016, she described his ordeal in an essay for the journal Neurology titled “The terrorist inside my husband’s brain.”
Rather than step back from it all, she turned her grief into a mission. Now vice chair of the American Brain Foundation’s board, she helped create its Lewy Body Dementia Fund, which supports the hunt for a biomarker that could lead to earlier diagnosis, plus research by early-career scientists and programs for patients and caregivers.
By 2020, the fund had raised more than $3.25 million. That same year, the documentary Robin’s Wish told his story from her perspective, tracing the path from his death to the discovery that changed everything she understood about his final year.
For fans, it reframed those last months. For Susan, it’s become the work of a lifetime.
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