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Susan Schneider Williams pens moving letter on Robin Williams’ neurological disease

Nearly 1.5 million people suffer from Lewy body disease in the U.S. Robin Williams was one of them.


April Siese


Posted on Oct 1, 2016   Updated on May 25, 2021, 9:33 pm CDT

Neurology, the official journal of the American Academy of Neurology received a powerful letter from a board member of the American Brain Foundation, a talented painter who just so happened to have shared her life with Robin Williams.

Susan Schneider Williams’ “The terrorist inside my husband’s brain” looks at the acclaimed comedian’s struggles with Lewy body disease, a diagnosis he would receive posthumously. LBD affects around 1.5 million Americans and “is characterized by the abnormal buildup of proteins into masses known as Lewy bodies,” according to the Mayo Clinic. Its symptoms can mimic Parkinson’s disease as well as Alzheimer’s—all sadly incurable.

For Robin, it was a bewildering death sentence, one in which he was acutely aware of, watching himself slip away in waves crashing all the more frequently, eroding the banks of mental and physical functions.

“Not until the coroner’s report, three months after his death, would I learn that it was diffuse LBD that took him,” Susan writes. “All four 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 percent loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”

The evocative name Susan titled her letter provides powerful imagery of the detrimental neurological effects Lewy bodies had on Robin. Though he was indeed diagnosed with Parkinson’s, both knew there was something more to his condition. They fought to find out more, engaging in what Susan refers to as the blind experience of unplanned research.

She’s found solace in looking towards the scientific reasons behind Robin’s condition and focusing on how to make gains against LBD. It’s why she wrote this visceral letter to Neurology:

I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up. Trust that a cascade of cures and discovery is imminent in all areas of brain disease and you will be a part of making that happen…

You and your work have ignited a spark within the region of my brain where curiosity and interest lie and within my heart where hope lives. I want to follow you. Not like a crazed fan, but like someone who knows you just might be the one who discovers the cure for LBD and other brain diseases.

Read Susan’s full letter here.

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*First Published: Oct 1, 2016, 1:25 pm CDT