The Terrorist Inside Robin Williams’ Brain

By Neuroskeptic | September 29, 2016 11:11 am

The journal Neurology published a unique and touching paper today: it’s by artist Susan Schneider Williams, the widow of actor Robin Williams, who died by suicide in August 2014. It’s titled The terrorist inside my husband’s brain, the ‘terrorist’ being Lewy Body disease (LBD), the neurodegenerative disorder that, as Schneider Williams recounts, destroyed his life.

Robin Williams 2011 (Dan Steinberg/Invision/AP Images)

Here’s how she describes the first signs of her husbands’ illness:

The colors were changing and the air was crisp; it was already late October of 2013 and our second wedding anniversary. Robin had been under his doctors’ care. He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell – and lots of stress. He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.

On this particular weekend, he started having gut discomfort. Having been by my husband’s side for many years already, I knew his normal reactions when it came to fear and anxiety. What would follow was markedly out of character for him. His fear and anxiety skyrocketed to a point that was alarming. 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.

Over the next 10 months, Williams’ various symptoms worsened, along with his anxiety. He also began to suffer from paranoia, delusions, and – hugely problematic for an actor – memory problems.

During the filming [of Night at the Museum 3 in April 2014], Robin was having trouble remembering even one line for his scenes, while just 3 years prior he had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines – and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.

Previously, Schneider Williams writes, she had always been able to reason with her husband and bring him out of his depressions. But as the disease progressed, this was no longer possible:

He was very concerned with insecurities he was having about himself and interactions with others. We went over every detail. The fears were unfounded and I could not convince him otherwise. I was powerless in helping him see his own brilliance… For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear. I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before.

On May 28th 2014, Williams was diagnosed with Parkinson’s disease and prescribed pramipexole, but it didn’t fully relieve his symptoms, and his mental state remained unstable. In late July he was switched to another drug.

As the second weekend in August approached, it seemed his delusional looping was calming down. Maybe the switch in medications was 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.

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.”

His words still echo through my heart today.

Monday, August 11, Robin was gone.

An autopsy revealed the presence of pathological Lewy bodies, microscopic spheres of protein, in neurons all across Williams’ brain. This finally revealed the underlying cause for Williams’ Parkinsonism, depression, memory loss and other symptoms. Specialists said that it was “one of the worst LBD pathologies they had seen.”

Schneider Williams goes on to say that even if the LBD had been diagnosed earlier, it probably wouldn’t have helped, as the disease is incurable. But she concludes with a message for the readers of 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.

The article is free to access and I recommend reading the whole thing. Neurology also has a podcast with an interview with Susan Schneider Williams, here.

ResearchBlogging.orgWilliams SS (2016). The terrorist inside my husband’s brain. Neurology, 87 (13), 1308-11 PMID: 27672165

CATEGORIZED UNDER: mental health, papers, select, Top Posts
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  • joseph2237

    What is troubling for me is the idea that he was depressed. We all think it would be great to be a comedian and make people laugh and all comedians have fun full lives. It is certainly hard to see that myth go up in smoke. Maybe laughter isn’t the best medicine after all, at lease not for the creator.

    • Amaya Hiko

      That is bullshit. The men was seriously ill. He had to challenge a progessively decreasing cognitive state. Depressions, even from a mostly healed heart, could easily resurface in the face of his everyday being torn to shreds and his inability to cope – because he was sick.

      Having such a diseases is neither fun nor can it be taken positive. At some point one might not want to suffer anymore and set everything free.

      • joseph2237

        One of us doesn’t know what they are talking about and I am pretty sure it’s you.

      • Grady Philpott

        I detect some reading comprehension problems.

      • Small_Businessman

        Very true, Amaya. Robin was a great comedian. But he was still a human, subject to all of the problems humans can have.
        I can imagine an actor not being able to remember even one like would be very depressing. And no one could find out what the real problem was – even more depressing.
        I miss his craziness and humor. But hopefully something good will come from his death.

    • soniasimone

      His depression was well managed. Many comedians and great comic actors struggle with depression, but his history of depression appears to have had little to nothing to do with his suicide.

      • Rose Garcia

        You obviously didn’t read the same article the rest of us did. The whole point of the article was about his depression and other symptoms stemming from LBD. The man had a serious neurological disease that caused depression and paranoia, among other symptoms. If you’re having cognitive problems, you really should see a doctor.

        • june conway beeby

          Terrorists is right. The brain infecting molecules are left free from detection and for decades have destroyed human lives. It is time for responsible governments to understand this truth about serious mental illnesses (SMI) and at the very least, give these diseases the same scientific funding and attention as it did for AIDS.

          • maidenvoyage

            Amen June. Research for Lyme Diease (&the related illnesses) is so needed. It hurts to know that more people will suffer these horrible symptoms & “not know” what is going on in their body. I will be praying indeed, for more research & cures. *Miss you & love you, Robin Williams💗*

  • John C

    Poor guy. You can only hope that some day diseases like these will be understood and treatable. RIP

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  • Virgil Rizzo

    This is very similar to PTSD.

  • http://www.RNA-mediated.com jvkohl

    For the past two years, all Nobel Prizes awarded to those in the “hard sciences” have been given to those whose experimental evidence of
    biophysically constrained biologically-based cause and effect refuted
    neo-Darwinian theories. When are neo-Darwinists and “big bang”
    cosmologists going to admit they were wrong about every theory they ever
    invented in attempts to link their theories to explanations for all
    biodiversity on Earth?

    • Norman Duncan

      The tragedy of politics and the world of research not to mount a concerted research effort with a planned and deliberate approach is beyond me. I have had a workable program to concentrate on disease stages yet our US Government continues to fund organizations that go nowhere. The science of the world needs an international conference not a money making meeting with the result false positives. Our candidates are not even discussing all the pandemics, we need an uproar here and abroad. Writing and sympathizing is OK but action is more important. Some of us are whistling Dixie trying to get the word out but what little that has been done has not reached remission or an early onset stabilization of any of the dementia’s The frustration continues.

  • sfrobink

    I wish we had known earlier – we would have communicated with you, Susan, about what to do. We know what he had: he had Lyme disease, presenting with Lewy body dementia. The scientist working on this is pathologist Dr Alan McDonald, on the East coast – he is autopsying brains of those who died from Alzheimer’s and finding the Lyme spirochetal bacteria in people’s brains. He has recently confirmed that Lewy body dementia is Lyme disease.
    Your description of all of Robyn’s symptoms fits Lyme disease symptoms – all of them. Lyme is usually transmitted by an infected tickbite or other infected insect. Marin County, for example, is 5-10% tick-infected, but ticks are everywhere now, in vegetation, on wood, and on animals.
    You can learn more about it and how to protect from getting it and co-infections at www lymedisease.org, www lymediseaseassociation org, www lymenet org – the latter has info at the top of Medical Questions, a Search function to type in any word or phrase and archived threads will come up, has discussion and referrals to Lyme-treating doctors.
    I’m sorry we didn’t know – we could have helped steer you to doctors who treat Lyme disease patients.
    If you need to get in touch with me, I am a knowledgeable Lyme disease advocate, at sfrobink @ aol.com

    • http://www.RNA-mediated.com jvkohl

      He died from constraint-breaking mutations because his physician’s did not know how to link the National Microbiome Initiative to the Precision Medicine Initiative by what is known to all serious scientists about RNA-mediated biophysically constrained viral latency.

      • betty g

        could you say that in simple english without all the medical terminology so we ALL could understand what you said and meant?

        huge thank you; please have short paragraphs vs. any lengthy, continuous text in one HUGE block for us neuro cognitive patients who lost our reading comprehension decades ago 😉 thanks!

        bettyg, iowa LEWY BODY DEMENTIA/PARKINSON’S/LYME disease activist

        • http://www.RNA-mediated.com jvkohl

          Anything more I could say has been said in the context of Nobel Prize-winning works from 1936 to this year’s award to Ohsumi. It is not possible to break it down into language that a layperson will understand, unless the layperson understands why Ohsumi won the award, which was based on all works that have every linked energy-dependent changes in angstroms to ecosystems via autophagy. And yet, Ohsumi has not linked virus-driven energy theft to Lewy Body Disease and all other pathology.

          Thomas Hunt Morgan was critical of Darwin’s theory of natural selection. He was eventually awarded the Nobel Prize in Physiology or Medicine for demonstrating that chromosomes act as the carriers of inheritance in 1936. Despite that fact, neo-Darwinian theorists have convinced most people that virus-driven energy theft can be linked from beneficial mutations to all biodiversity, via diseases like all of them that have been killing people like Robin Williams in the context of ridiculous theories.

          • Weylen Mingan

            So what is your point here? The only thing I got was you want to be another conspiracy theorist? The world has enough of those if you have a job perhaps you should get back to work….

          • http://www.RNA-mediated.com jvkohl

            The facts detailed by Nobel Laureates since 1933 are not part of any conspiracy theory. They simply attest to the amount of ignorance displayed by people like you. For comparison, see:

            Combating evolution: Battlefield medicine vs politicized science http://rna-mediated.com/combating-evolution-battlefield-medicine-vs-politicized-science/

          • Weylen Mingan

            Ok, JV you got my attention. :) I visited your links and you have some fascinating stuff here but I must say it would and will take a genius to understand what you and your colleagues since 1933 are trying to tell us simple folk. I’m always into a new paradigm and if you have one that will toss aside evolution I’m in…. It always drove me nuts this idea of chemicals chasing after what was in their best interest for survival. Ain’t happenin… :)

            So are you just adjusting your thoughts on evolution or tossing out any idea of evolution for creationism at this point? I’m going to continue to digest the information you are providing and hopefully I will be able to come to some basic understanding of this new thinking…

          • http://www.RNA-mediated.com jvkohl

            I have published a detailed model that refutes every aspect of neo-Darwinian evolution. https://www.ncbi.nlm.nih.gov/pubmed/24693353

            My blog site RNA-mediated.com and my FB page https://www.facebook.com/groups/rnamediated/?ref=bookmarks are a continuation of factual representations that link experimental evidence from ecological variation to all energy-dependent ecological adaptation in all genera.

  • betty g

    Susan, thank you for your personal, heartfelt comments, and telling it like it was with Robin’s illnesses and symptoms that he suffered thru without the public’s knowledge.

    My sympathies to you and Robin’s grown children; we each share your deep loss of him…his comic self, the serious actor, a gigantic humanitarian, and Robin, the person.

    My husband and I loved watching Robin’s movies/comic routines.

    It’ll be 48 yrs. this Christmas season I was bitten; misdiagnosed 35 yrs. by 40-50 drs. and finally CORRECTLY diagnosed with Borrelia/Lyme disease. UNACCEPTABLE!

    Susan, do you or his children know if Robin ever had a tick embedded in his skin with blood or a bulls-eye rash or any strange rashes appearing when he was 1st sick leading up to his suicide?

    My husband, Jack, died 11.1314; I donated his body to Des Moines, Iowa Osteopathic college for study by medical students.

    I was able to get his brain autopsied by Paula Pierce and Dr. Alan MacDonald 1 yr. later. Jack’s brain made WORLDWIDE HISTORY having 2 diseases NEVER found together before!!

    Borrelia/lyme disease and LEWY body dementia causing violent hallucinations like Robin Williams had!
    ********************************************

    Susan, I know the Duray Research Foundation would love to be able to examine or do blood staining of Robin’s autopsied brain to look for any other diseases besides Lewy body dementia that showed up … Borrelia/Lyme disease, Parkinson’s, MS, and Alzheimer’s are the specialty diseases their research is after.

    If you’d like to talk to Tom Grier, executive director now of Duray, you can email him at DONATEBRAIN@GMAIL.COM ; thanks for your consideration 😉

    I kept telling Jack’s neurologist of many years about his VISUAL & VIOLENT hallucinations for many months up to 1+ year where he’d wake up yelling/screaming that someone was trying to kill him. He was NEVER in the military wars.

    They just kept telling me it was tremors 1st, then Parkinson’s disease, and dementia was showing up but NEVER mentioned it had developed in Lewy body dementia.

    Since his behavior had turned bazaar in many aspects, I wanted his brain autopsied to give me SCIENTIFIC MEDICAL evidence of what he HAD vs. what the drs. said he had and I got it below !!

    Since Jack was 1st case discovered worldwide, he is being written up for a MEDICAL SCIENTIFIC journal to be submitted and published sometime in unknown future and unknown journal !!

    I will be the FIRST co-author as a non-medical person over Alan, Paula, and Tom Grier 😉

    Jack was NEVER diagnosed or treated with either of these 2 diseases! His lyme disease goes back 35 yrs. just like me, but he was bitten 10 yrs. later than me.

    I’m trying to have his death certificate amended showing his scientific brain autopsy results, but that’s like trying to get congress to approve and sign off on our lyme/tick-borne disease bills there!!

    I need a court order to do this listing what to show on there.

    Iowa Code states either county or state coroner must request this. County coroner insists on getting Alan to do a death certificate with his findings.

    Alan’s POSTER board of Jack’s and a Cape Cod, Mass. brain autopsy who was diagnosed with same diseases 1 wk. later than Jack’s, is unacceptable for him to proceed to even ATTEMPT to do this for me.

    Jack’s poster board can be found at the DURAY Research Foundation site and also here:

    https://f1000research.com/posters/5-127

    You can read our story that I wrote here of our 82 years with chronic Lyme disease at the Duray Research Foundation site:

    https://durayresearch.wordpress.com/our-work/alzheimers-disease-and-borrelia/eighty-two-years-as-chronic-lyme-disease-patients/

    I am also trying to get Jack shown in Iowa’s CDC POSITIVE lyme state statistics! I’ve being fought on that too! grrr.

    I went to my 1st May Day Lyme rally, protest, 3 hr. educational program in Senate building on lyme, etc. and met with my 2 Iowa senator’s aids about Jack’s Lyme/Lewy body disease and our Lyme/Tick-borne bills in congress.

    I’ll attend my 1st LDA/Columbia Univ. Lyme conference in St. Paul, Minn. next week.

    I’ll continue to speak out about the many injustices of getting us diagnosed, treated, and health insurance companies NOT paying their “fair share” like they do for cancer and aids/hiv patients!

    Susan, I’d love to talk to you sometime, 1 LEWY/lyme spouse to another about the horrors we saw our beloved husbands going thru.

    You can reach me with this email: ticktalkwithbetty@gmail.com

    subject: Lewy body dementia so I’ll know it’s NOT spam.
    **********************************

    Betty Gordon,
    Iowa lyme/lewy body dementia, Parkinson’s disease activist

  • betty g

    Susan, I forgot to say in my earlier, lengthy reply that I do understand completely why Robin chose to end his life due to his Lewy body dementia, severe depression, and that his memory would no longer let him remember his comedy punchlines, etc.

    I know what my late husband, Jack, went thru, and it was NOTHING extreme like what Robin was/had been going thru for quite sometime.

    Just wanted to add this since I thought of this now. If I don’t, here today, gone tomorrow from my thought process.

    Bettyg, Iowa LEWY body dementia/lyme disease widow/activist

  • bfries

    See this press release about evidence that ‪‎Lewy Body Dementia can be
    caused by parasitic nematode worms transmitted by ticks. These same worms can host Lyme bacteria as endosymbionts.

    Lyme Bacteria Hides Inside Parasitic Worms Causing Chronic Brain Disease
    http://www.webwire.com/ViewPressRel.asp?aId=203268

    • betty g

      Bruce, thank you for sharing this press release.

      NOTE: to the right it shows Dr. MacDonald’s 26 min. video about the latest discoveries DURAY RESEARCH FOUNDATION has made in 2016 that would have been shown to those of us attending this special lyme meeting with speakers galore.

      Alan was unable to make it due to being suddenly ill at that day.

      Please check it out and the work that they have done to date; very worthwhile 😉

      Betty Gordon, Iowa widow of
      Lewy body dementia/LYME disease/cancer patient…..

  • june conway beeby

    I am so sad that Robin suffered so much. No one should have to live with neurological infections like his.

    We neglect proven science into human brain diseases that cause schizophrenia,depression and related neurological diseases.

    Instead we bring psychology and sociology and social concepts to find the root causes of these biological diseases.

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Neuroskeptic is a British neuroscientist who takes a skeptical look at his own field, and beyond. His blog offers a look at the latest developments in neuroscience, psychiatry and psychology through a critical lens.

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