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n the months before his death, Robin Williams was besieged by paranoia and so confused he couldn’t remember his lines while filming a movie, as his brain was ambushed by what doctors later identified as an unusually severe case of Lewy body dementia.

“Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating?” the actor’s widow, Susan Schneider Williams, wrote in a wrenching editorial published this week in the journal Neurology.

The title of her piece: “The terrorist inside my husband’s brain.”

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Susan Williams addressed the editorial to neurologists, writing that she hoped her husband’s story would “help you understand your patients along with their spouses and caregivers a little more.”

Susan Williams has previously blamed Lewy body dementia for her husband’s death by suicide in 2014. About 1.3 million Americans have the disease, which is caused by protein deposits in the brain. Williams was diagnosed with Parkinson’s disease a few months before he died; the telltale signs of Lewy body dementia in his brain were not discovered until an autopsy.

The editorial chronicles Williams’s desperation as he sought to understand a bewildering array of symptoms that started with insomnia, constipation, and an impaired sense of smell and soon spiraled into extreme anxiety, tremors, and difficulty reasoning.

“My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out,” Susan Williams wrote.

For nearly a year, in a painful odyssey that will be familiar to many patients, Williams tried to find out what was wrong with himself — and fix it. He underwent tests and scans, tried new medications, did physical therapy, worked out with a trainer, and sought out alternative treatments like self-hypnosis and yoga.

“He kept saying, ‘I just want to reboot my brain,’” his widow recounted.

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Susan Williams traced the first signs of trouble to a celebration of their wedding anniversary, about 10 months before her husband died, when “gut discomfort” made him fearful and anxious. That set off months of escalating problems.

Williams struggled particularly while filming “Night at the Museum 3” in the spring of 2014. He had a panic attack and had trouble remembering “even one line” in his role as Teddy Roosevelt. By contrast, Susan Williams wrote, he had remembered hundreds of lines without error while performing on Broadway three years before.

Another heartbreaking hallmark of the disease: Frequent shifts in and out of clarity.

“I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion,” she wrote.

Dr. James Leverenz, a behavorial neurologist at Cleveland Clinic, told STAT that reading the editorial “brings back memories of many different patients I’ve seen with very similar experiences.”

Robin Williams’ frequent moments of lucidity, he said, illustrate what sets the condition apart from advanced Alzheimer’s, where such flashes are rarer. “I’ve had patients with fairly severe Lewy body dementia that will sit in clinic and make actually nuanced jokes with me,” Leverenz said.

After her husband’s death, Susan Williams wrote that she had many long conversations with doctors to retrace and understand what had happened to him. All four doctors who had reviewed his records, she said, “indicated his was one of the worst pathologies they had seen.”

Though she and her husband both craved a diagnosis during those bewildering months before his death, Susan Williams said in retrospect she is “not convinced that the knowledge would have done much more than prolong Robin’s agony” and turn him into “one of the most famous test subjects of new medicines and ongoing clinical trials.”

There are no approved drugs to treat the disease, but Leverenz said that early diagnosis can allow patients to access off-label medications that can be very helpful, atypically so for dementia, to manage their disease. Roughly half of patients get diagnosed while they’re still alive, he said.

Susan Williams has joined the board of the American Brain Foundation, a nonprofit that funds research on neurological illnesses.

“Hopefully from this sharing of our experience,” she wrote, addressing neurologists, “you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom.”

She added: “Do not give up.”

This story was updated to include comments from a neurologist.

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  • His death was blitzed by the media circus. Now that the actual cause has been found and really needs more media coverage, where are they ? To this day, many people still believe it was suicide because he was depressed and have no idea the real story. I believe Robin Williams condition deserves the same coverage, if no other reason than common decency. Thank you for this web site !

  • My grandfather died of complications of Lewy body dementia. We had a pretty good idea of what it was before the autopsy confirmed it because I happened to be working on a story about the various types of dementia at the time. The combination of Parkinson’s-like movement symptoms and cognitive symptoms matched up almost exactly with what he was experiencing. The doctors locally couldn’t offer any kinds of therapies to try to slow it down, but it did give us some peace to know that his moods and statements were the disease process, not him. I can’t imagine how much harder it would be to not know what a loved one was going through.

  • Since many patients with Lewy body dementia react to anesthesia differently than Parkinson’s or Alzheimer patients, it is very important to determine what kind of dementia people are having…

  • Would love to see a list of those medications, and how many of them have serious side effects, disclosed and undisclosed. Suicidal ideations stemming from misuse and off-label use of psych drugs are far more common than Big Pharma will allow to be known. Robin was just another victim of the Blockbuster Sundrome that kills thousands annually.

    • While suicidal ideation from both psych and non-psych drugs could certainly use more attention, the article makes clear that Williams was suffering from the effects of Lewy body dementia. He wasn’t a basically mentally healthy person felled by drug side effects.

  • Thank-you for this article. I had loved Robin Williams since I first saw him in San Francisco. decades ago. I was devastated when he died and now I am getting some closure from this article you wrote. Of course you know that his fans cared about him very much.

    • The San Francisco community (particularly the comedy community) still mourns his death. I never met him, but I know I do. This news makes it even more poignant. My late bass player Jose Simon knew him well. http://laughsfoundry.blogspot.com. See also the documentary film “3 Still Standing.”

  • Thank you for this moving, sad and tragic article. The real question is why these conditions develop. People with neurologic, gut, autoimmune and other problems should be screened for genetic susceptibilities to heavy metals, chemical toxins, mycotoxins, etc., and for their presence in the body beyond typical blood and urine tests, which only measure circulating and not bioaccumulation in cells and organs among those who do not methylate well. We need more focus on early identification and remediation to interrupt and reverse disease processes, as well as on medications (which typically only address one imbalance).

    • Laura, you seem to be getting ahead of the actual science. We need careful research that will go wherever the science and evidence lead, not preconceived notions that refuse to die despite lack of scientific support.

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