“It wasn’t until Robin’s autopsy that we got an accurate diagnosis,” explains Susan Schneider Williams, widow of the late comedian, in a talk she gave at Life Itself—a health and wellness conference presented in partnership with CNN. Robin Williams was diagnosed with Parkinson’s disease a few months before his death, at which time his family learned he instead had dementia with Lewy bodies.
At first Schneider Williams said she didn’t think an accurate diagnosis would have made a difference given that there is no cure for Lewy body dementia (LBD). But now she says, “Diagnosis is everything.” A diagnosis would have allowed Williams to potentially participate in clinical trials, seek specialized care, join the LBD community, or donate to research efforts. “The bottom line is, Robin wouldn’t have had to feel so afraid, and we wouldn’t have had to waste so much precious time trying to figure out what was going on.”
Dr. James Galvin, a professor of neurology and director of the Comprehensive Center for Brain Health at the University of Miami Miller School of Medicine highlights two developments in diagnostic testing for LBD—a spinal fluid test from Amprion and the Syn-One Test® from CND Life Sciences. He notes that to be able to diagnose LBD in a living person is a huge advantage for the patient and helps to advance research.