Robin Williams’ widow makes heartfelt plea to scientists working on brain disease

When Robin Williams passed away in 2014 so many of us were heartbroken. His family and friends have spoken many times since them about what the actor meant to them personally but now his widow Susan Schneider has written an essay everyone should read.

Writing a lengthy piece on Neurology.org, Schneider (a member of the Board of Directors for the American Brain Foundation) lays out details of her last few years with her husband. While it's directed at scientists and others in medicine, “My hope is that it will help you understand your patients along with their spouses and caregivers a little more,” she wrote, knowledge is power and it looks like Schneider wants to help a lot of people with this.

At the time of his death, Schneider had announced Williams was in the early stages of Parkinson's Disease but in the piece titled “The terrorist inside my husband's brain” she tells us there was a bit more to it.

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.

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 is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.

Schneider speaks about the many doctor visits and other things they tried to find a cause of his specific symptoms when so many tests came back negative. She also discussed how it affected his work and what that meant to him:

In early April, Robin had a panic attack. He was in Vancouver, filming Night at the Museum 3. His doctor recommended an antipsychotic medication to help with the anxiety. It seemed to make things better in some ways, but far worse in others. Quickly we searched for something else. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD. Also, Robin had a high sensitivity to medications and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.

“Robin was losing his mind and he was aware of it,” she continued. “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.”

When Williams was officially diagnosed with Parkinson disease however, he knew there was more, even if doctors couldn't tell him what. It wasn't until after the autopsy report Schneider got the LBD information. “I had no idea what it meant at the time,” she says. “The mere fact that something had invaded nearly every region of my husband's brain made perfect sense to me.” She's since spent a lot of time researching this diagnosis which currently has no cure.

“Hopefully from this sharing of our experience you will be inspired to turn Robin's suffering into something meaningful through your work and wisdom, ” she said, talking specifically to scientists working towards cures to brain diseases, “It is my belief that when healing comes out of Robin's experience, he will not have battled and died in vain.”

Please give her whole essay a read when you've got a chance.

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