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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 of the brain is really our ability to regulate our emotions, particularly fear and anxiety. And Robin’s was basically broken.”

Toward the end, Williams also experienced delusional looping. “Your brain is concocting a story of what you think reality is,” Schneider Williams said. “And the people around you are unable to rationalize with you and bring you back into what is actually real. So it’s incredibly scary for everyone around someone who’s deluded as well as the deluded person.

“As a caregiver, you feel incredibly powerless when you realize, ‘Oh my gosh, nothing I say or do anymore can bring him back to what’s real.’ And that’s a very scary place,” she said. “Lewy body – it really takes over.”

Nearly eight years after the diagnosis that catalyzed Schneider Williams’ research journey, she is “just now starting to really pick up the pieces of my own life,” she said.

“I kind of need to go underground for a while and relocate my inspiration and my true passion, which is art and painting,” Schneider Williams said. She plans for a portion of all her future print sales to go to LBD research, and she will stay in touch with efforts related to the documentaries and the Lewy Body Dementia Fund, where she remains lead chair.

As Schneider Williams widens her focus while leaving her door open for LBD advocacy, experts continue their research efforts.

“We’re always learning more and more about the disease, from the basic science studies looking at cells and test tubes, to animal models, to human observational studies,” said 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.

Recent highlights include the introduction of at least two new diagnostics, Galvin said: a spinal fluid test from the company Amprion and a skin biopsy test from CND Life Sciences. The spinal fluid test tracks misfolded synuclein and helps doctors diagnose brain diseases, including LBD. The skin biopsy test aims to help doctors distinguish between serious neurologic disorders.

“To have diagnostics – that can confirm in life that someone has Lewy body disease – goes a long way both toward confirming the diagnosis and advancing research,” Galvin said. “The earlier you can start people on treatments, the easier to enroll people in clinical trials to test new medications.”