The misdiagnosis occurred in May 2014 after Robin had been experiencing severe memory, movement, personality, reasoning, sleep and mood changes.
The comedian had undergone multiple tests to identify his problem, most of which were negative. “None of the doctors knew that there was this ghost disease underlying all of this,” Schneider Williams told CNN in an interview. “When that was revealed, that was like essentially finding out the name of my husband’s killer.”
Because LBD initially presents similarly to Alzheimer’s or Parkinson’s disease, it’s often misdiagnosed. And since Lewy body proteins can’t be tested like Alzheimer’s proteins, LBD cases are often diagnosed after death when families request autopsies for closure or more details, or to donate a loved one’s brain for research.
Misdiagnosis and overlapping symptoms can lead to a world of confusion for patients and their families, so for Schneider Williams, finally learning the truth behind her husband’s “pain and suffering” was a “pinprick of light,” she said.
“That’s when my own healing started to begin,” she said. “We had this experience with something that was invisible and terrifying, truly. And then on the other side of it, I’m left to find out the science underneath it that helped explain this experience. Robin wasn’t crazy. That was one of his biggest fears.”
“I couldn’t live with myself if I didn’t tell this story,” Schneider Williams said. “I had no idea the journey I was about to begin on. But I had to go there.”
Doctors and researchers wanting to mitigate the kinds of experiences her husband endured “have a tall order,” she said, “but progress is being made.”
‘Chemical warfare in his brain’
Lewy body dementia has more than 40 symptoms that can randomly appear and disappear, Schneider Williams said. Categorically, the signs include impaired thinking, fluctuations in attention, problems with movement, visual hallucinations, sleep disorders, behavioral and mood issues, and changes in bodily functions such as the ability to control urinating.
What “marked the beginning of a cascade of symptoms” was when her husband started experiencing never-ending fear and anxiety, Schneider Williams said. It began to happen in 2012 when Williams started to pull back from engaging with people at the Throckmorton Theatre in California, where he would try new material out and riff with other comedians just for fun, she added.
The anxieties persisted beyond what Williams had experienced in the past and what is normal for a beloved actor living with the pressures of being on a world stage.
Eventually, paranoia was another significant symptom, Schneider Williams said. “It was the amygdala region of his brain that had a ginormous amount of the Lewy bodies. So that area…
Read More: Lewy body dementia: What Robin Williams’ widow wants you to know