Robin Williams’ widow detailed what really killed the beloved actor.
In an editorial titled "The terrorist inside my husband's brain" in the peer-reviewed Neurology journal, Susan Schneider Williams revealed that Robin Williams was suffering from Lewy body disease when he took his own life in 2014.
Lewy body disease (LBD) is a form of dementia and is similar to Alzheimer’s disease, according to Alzheimer’s Australia. LBD causes the degeneration and death of nerve cells in the brain because of the presence of Lewy bodies that develop inside nerve cells. People with LBD may have difficulty concentrating or holding attention, extreme confusion, the inability to judge distances, visual hallucinations, tremors and stiffness similar to symptoms seen in Parkinson’s disease and fluctuations in mental state, including depression.
Susan wrote that when Robin committed suicide, it was “at the end of an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology.”
It was not until three months after Robin’s death in a coroner’s report that Susan learned LBD had a hand in his death.
“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,” she wrote. “He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”
When the “firestorm” of symptoms LBD caused began affecting Robin, Susan credits friendship and love as their armor against them.
In October 2013, Robin was seeking medical care for symptoms that appeared to be unrelated to LBD.
“His fear and anxiety skyrocketed to a point that was alarming,” Susan wrote. “I wondered privately, Is my husband a hypochondriac? Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.”
Robin also suffered from a loss of memory and concentration. While filming “Night at the Museum 3” he had trouble remembering even one line for his scenes.
“This loss of memory and inability to control his anxiety was devastating to him,” Susan wrote.
“It felt like he was drowning in his symptoms, and I was drowning along with him,” she wrote. “Typically the plethora of LBD symptoms appear and disappear at random times—even throughout the course of a day. I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion."
Robin’s history of depression complicated his diagnosis, because when it surfaced months before his death it was not considered a symptom of his disease, which at this time doctors thought was Parkinson’s.
“Throughout the course of Robin's battle, he had experienced nearly all of the 40-plus symptoms of LBD, except for one. He never said he had hallucinations,” Susan wrote.
The weekend before Robin took his own life, Susan said he appeared to be doing better--a new medication may have been working.
“We did all the things we love on Saturday day and into the evening, it was perfect--like one long date. By the end of Sunday, I was feeling that he was getting better,” she wrote.
Susan did not know that this would be the last weekend she’d spend with Robin.
“When we retired for sleep, in our customary way, my husband said to me, ‘Goodnight, my love,’ and waited for my familiar reply: ‘Goodnight, my love,’” she recalled.
The next day, Monday August 11, Robin committed suicide.
“The massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain,” she wrote.
Susan is now a board member at the American Brain Foundation. By sharing Robin’s story in the neurological journal, she hopes doctors will continue to research LBD and develop a cure.
“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,” she wrote.