Lewy body dementia: What Robin Williams’ widow wants you to know

CNN
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After Robin Williams died by suicide in August 2014, his widow, Susan Schneider Williams, would soon learn about a disease she had never heard of, but one that had haunted both of their lives.

That disease is Lewy body dementia, with which the actor was diagnosed in October 2014 following an autopsy on his brain. “A few months before he passed, he was given a Parkinson’s (disease) diagnosis,” said Schneider Williams, an artist and advocate for LBD awareness and research, at the Life Itself conference, a health and wellness event presented in partnership with CNN. “But that was just the tip of the iceberg.”

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.”

Dementia is a disorder of mental processes marked by memory dysfunction, personality changes and impaired reasoning due to brain disease or injury. The exact cause of LBD, which affects about 1.4 million Americans, is unknown. But the disease is associated with the accumulation of the protein alpha-synuclein, which is typically present in the brain and in small amounts in the heart, muscle and other tissues. Alpha-synuclein might help regulate neurotransmitters. But when this protein accumulates and forms masses (called Lewy bodies) within the brain, the effects are devastating.

Lewy body dementia and Parkinson’s disease dementia are the two types of Lewy body dementias, which are the second most common form of dementia after Alzheimer’s disease, according to the Lewy Body Dementia Association.

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.

Typically for undiagnosed LBD patients who initially exhibit movement issues, doctors first diagnose them with Parkinson’s disease since it is a movement disease. If those patients later develop dementia as well, they are often diagnosed with Parkinson’s disease dementia. More specific changes in cognitive function, too, over time can lead to the diagnosis “dementia with Lewy bodies.” Although Lewy bodies are common with Parkinson’s disease, not all Parkinson’s patients will develop LBD.

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.”

So that other patients and caregivers can experience the same truth, understanding and healing, Schneider Williams has been in a “rabbit hole of discovery” and advocacy for eight years now. She has served on the board of the American Brain Foundation for six years, helped establish the Lewy Body Dementia Fund and its $3 million research grant award aimed at finding an accurate biomarker, and contributed to the documentaries “Robin’s Wish” and “Spark: Robin Williams and His Battle with Lewy Body Dementia.”

“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.”

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…