Robin Williams, Lewy Body Disease, and a Personal Account From His Wife
Robin Williams was an amazing, brilliant individual. His wife, Susan Schneider Williams, wrote an editorial recently for Neurology. The terrorist inside my husband’s brain was written to help the doctors have a better understanding of their patients, spouses and caregivers. This is a compelling essay that gives us insight into Mr. Williams’ situation and that of his wife. All dementias are horrible diseases, and Lewy Body strikes almost 1.5 million folks according to the editorial. Of course, Mr. Williams isn’t the only one who has had Lewy Body, but he might be the most famous and was one of the few hit so hard by the disease. “Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”
Mrs. Williams walks the reader through the last months of their life together, describing how the disease was affecting Mr. Williams personally and professionally. Brilliant and talented, “Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back.” She explains the difficulties with diagnosis and their work to determine how to treat him.
She offers that she and Mr. Williams “had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it.”
This is a powerful, emotional first person account.