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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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  • I just lost my father to LBD on 12/11/17 after a sharp decline in his cognitive abilities/severe escapes & hallucinations/ swallowing difficulties & movement, beginning to worsen noticeably roughly just 13 months ago, & it was excruciating to experience with him, even in Hospice care. I was his caregiver for 8 years as he battled severe pulmonary, cardiac, renal, & other organ failures. He even beat 2 cancers, but as a fighter, he WAS ‘winning’-then came Lewy Body Dementia and Parkinsonian symptoms. These were the most brutal attackers of all. I can only imagine what Mr. Williams & his wife went through, as it is truly, as she described, “a terrorizer of the brain”. My father had amazing jokes, was the most gentle & delicate man, was a P.E. teacher & had a double master’s degree in physical ed. & industrial education & was known to be the most patient, funny, calm & forgiving man, in at least a 2 state radius. Suddenly, his personality changed-he had violent outbursts & more than memory loss; he suddenly wanted to “escape”, no matter what myself & my mother could do, (as I brought her on as a caretaker) & he viewed us as persecutors (as did he with his medical caretakers). It was so obvious that his hallucinations were violent & he was trying to protect his loved ones, but saw everyone as someone trying to attack him & became violent, had to be restrained with horrible experiences that degraded his dignity & made his worst nightmares “come true”, as he was literally restrained & hospitalized repeatedly, until we ultimately made the decision to bring him to Hospice, where his swallowing disabilities, & Parkinsonian symptoms ultimately took his life, which was not peaceful nor easy to watch (as his caretaker for 8 years, I was the only one who could stay in his room w/Him unable to breathe-it was unbearable-& I understand what Mr. Williams & his family must have gone through, especially his wife as his main caretaker). I know when my Father was running from the authorities & from the medics & from even myself…He recognized no one…the protein deposits in his brain which took over his personality & made him feel persecuted & attacked were so cruel & unlike “Him”. Suddenly He felt like the world was trying to harm Himself & his loved ones, & was constantly on the defense, trying to escape. It was then that I realized that He needed to escape his body, & this anguish…& simply let His spirit be free… which was so painful, realizing the contribution he had given to this world.
    This is an ugly, mysterious, cruel disease that needs to be solved & investigated immediately, as it is pure hell, not only for the patient, but for the caregivers-who would clearly do anything to trade places with their loved one, as watching this unfold is unbearable.
    My heart goes out to the late Mr. Williams & his family. I lived & worked for a bit in the small No. CA town where he lived, across the Golden Gate bridge, & I worked in an art gallery near the water (Hanson Gallery). I would see him riding his bike. I respected his privacy, but always knew his work would bring a smile to mine & my Father’s faces …Never did I dream that one day He and my Father would share this horrific disease, both losing their lives to it.
    My only hope is that perhaps they are meeting in the afterlife & sharing laughter-as it should be. This world is full of too much pain, mystery and “reality”. What Mr. Williams stood for, it seemed, was to bring a relief for those who are suffering from ailments of all sorts. Boy, was He magnificent at that!
    May He be living the life He deserves now, along with my Father and all of those who suffered from any type of ailment or abuse. I pray for love & healing for His surviving family & I hope the medical field truly investigates Lewy Body Dementia, as it is a rare, misunderstood, & truly devastating illness that puts caretakers through hell, & in my opinion, unnecessary trauma, as it is misunderstood & not well explained-even in the doctor’s office. Even in neurology offices, even in a memory care or teaching hospital.
    It is something to navigate alone, which is unfair to the patient & the caregiver(s).
    Rest in peace & laughter, Mr. Williams.
    Bless your family, & I hope somehow you, my Father & all of those who had to suffer with this particular hell on Earth are now free & are enjoying exploring & dancing in Your Spirits in a much better place.
    In fact I don’t “hope”, I feel it with certainty.
    God bless Your beloved family. I celebrate for Your freedom & my Father’s as well. I feel a bond with Your family, though we have never met.
    Be free, dear man…You gave us all Your utmost. I witnessed the type of suffering You went through, via my beloved Dad’s horrific experiences.
    Thank God you are FREE, & are ALWAYS in our hearts, never forgotten, just like my Dad.
    All of my love,
    Barbara Schmitt,
    Fort Collins,
    Colorado

  • 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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