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In the new issue of the medical journal Neurology, Robin Williams’s widow, Susan Schneider Williams, penned a deeply personal, often painful account of her husband’s battle with Lewy body disease, also called Lewy body dementia, a diagnosis that only came after the actor’s death, in 2014. Williams described a long, harrowing period in which doctors attempted to draw a conclusion from the comedy legend’s multitude of physical and mental symptoms, not the least of which was a mounting sense of fear and anxiety. Williams had suffered from depression in the past, but its reappearance during the last years of his life was likely linked to the insomnia, confusion, and, his wife now suspects, hallucinations associated with the disease. “For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear,” she says of his illness. “I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before. My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.”

Williams recalls an incident in which Robin Williams took an antipsychotic while shooting Night at the Museum 3 in an attempt to treat his panic attacks. Without a diagnosis, there was no way for either of them to know that Lewy body disease patients often experience bad reactions to antipsychotics. However, Williams doubts that a diagnosis would have changed the end of her husband’s life. “But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this,” she writes. “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.” At the end, Williams offers their story to Neurology’s readership as fuel for their work on degenerative neurological diseases. “Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom,” Williams continues. “It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain.”