In a powerful, first person account, the wife of the later Robin Williams, Susan Schneider Williams, recently wrote an editorial in Neurology describing her husband’s struggle with a type of dementia known as Lewy Body Disease (LBD). The editorial, “The terrorist inside my husband’s brain,” provides a compelling insight into Robin Williams’ struggles with the disease that ultimately led him to take his own life in 2014.
All dementias are horrible diseases and according to the editorial, approximately 1.5 million currently suffer from LBD. Robin Williams however might be its most famous victim 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.”
Robin’s wife details their last months together, describing how the disease effected Robin 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.”
By sharing her story, Robin’s wife hopes others will be “inspired to turn Robin’s suffering into something meaningful.” Let’s hope she is right.