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

    • Steve

      Betty, I tried to reply to your 9-14-2017 comment on Amy Haynes Parasite Summit presentation, but maybe they moderate out comments containing links. Perhaps you will find it here. Frequency equivalents of Lewy proteins can be detected in the voice; BioAcoustics can also assist the body to heal in remarkable fashion via sound presentation. I made a small site to introduce this paradigm-shifting technology: http://tiny.cc/soundadvice Here is the post I tried to leave on the Parasite Summit:

      Condolences on your husband’s passing. You may find this interesting: Robin Williams’ Lewy body proteins were identified via BioAcoustic vocal analysis as pioneered by Sharry Edwards. After his death, Sharry publicly announced on the radio her findings that suggest Williams suffered from dementia; the next day Williams’ wife publicly disclosed that he did in fact suffer from Parkinson’s. If you click through the link you can see the high spikes on the left hand side of his vocal chart that corresponds to the Lewy proteins. https://www.soundhealthoptions.com/political-plays

      • IowaBettyG

        hi steve,

        your above comments GOT TO ME; yippee!!

        i went to the site. i couldn’t find how i could click on left side finding robin williams voice & comments about it.
        thanks for sharing this.

        are you connected with this company??

        my husband lost his voice so much where it was barely a whisper towards the end except when he was cussing. LOL 😉

        i have shared your comments/site with others. i know dr. alan macdonald would have loved to get blood staining slides from robin’s brain to check for the other diseases he specializes in on brain autopsies and talk to susan, robin’s widow.

        i am STILL trying to get jack’s brain autopsy results of chronic lyme and lewy body dementia ADDED as contributing factors to his death certificate plus he had A FIB too;

        waiting to talk to iowa’s vital statistics BUREAU CHIEF about this. been getting the runaround for 2 yrs. this nov. on trying to get this done. WAIT & SEE; some taking 6-9 months wih I’M SORRY it took me so long to reply to you …. yeh right.

        trying to get him added to IOWA’S CDC LYME STATISTICS too; told earlier; a court order would have to be gotten to do this showing what to put on there.

        betty gordon, iowa widow/advocatist
        48 yrs. chronic lyme; misdiagnosed 35 yrs. by 40-50 drs. unacceptable!

        • Steve

          Oh, I’m glad contacting you here worked! The folks running the Parasite Summit seem to be very picky or non-attentive about moderating submitted comments there. My comment for you never got posted there. I submitted it a second time without any links and that did not post either. Even my comment on Jordan Rubin’s presentation did not post; I was just letting them know that their Presenter’s Site link for Jordan was incorrectly pointing to Dr. Axe’s site. Oh well, I’m pleased this route worked.

          I was trying to be brief on the original post so was not very clear. After you click that soundhealthoptions link to get to the article about Robin Williams, you will see another link beside his photo titled “Robin William’s suicide provides information that will have consequences for millions of Americans”. Click that link and it takes you to an overview of his BioAcoustic analysis. It shows a voice print graph, and the two or three spikes on the left of that graph are the signs of Lewy proteins. It is fascinating that such detailed information can be gleaned from 30 seconds of voice.

          I do not work for soundhealthoptions; I have taken some of their classes and have been following for several years. They are a non-profit research institute whose purpose is to further BioAcoustic research so that this healing technology can be accessible by the people. You might want to check them out by joining in on the weekly Tuesday evening “Happy Hour” demo sessions or the “Direction 4 Truth” activist talks. Find these under the Radio menu at soundhealthoptions.com.

          I enjoy learning about natural holistic health topics whether it is regarding nutrient supplementation, herbal formulations, energy medicine, etc. As I listen to many podcasts and shows I take notes when something really stands out so that I can utilize it or share with others. Our environment is continually becoming more corrupted, and our medical system is largely ineffective, so better solutions need to be discovered and propagated. If you would like to follow up with me, feel free to email me at sitaifun@gmail.com.

          • IowaBettyG

            What city/state are you from?

          • Steve

            Houston Texas

          • IowaBettyG

            praying you are safe extended prayers to all that have been wiped out by the hurricanes. Maybe I’ll be getting the help they need and we have not forgotten them.

          • Steve

            Thank you. Luckily my area did not flood at all.

  • 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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  • diane

    Thank you for sharing your very personal story. My husband passed away 6 weeks ago with a diagnosis of LBD two weeks prior to his death. He had stage 4 adenocarcinoma lung cancer but that was incidental to this disease. For a long time he seemed to be in some state of confusion at times, shuffled his feet, had various seemingly unrelated pain. We saw many specialists who misdiagnosed or said there was nothing wrong with him.

    I have second guessed this so many times and your experience parallels mine so closely. We live in CT where Lyme disease originated. The comments here seem to indicate there might be a link between them. This is very alarming.

    I mostly wanted you to know that sharing your experience has given me a sense of peace that I did everything possible and this is an undiagnosed and incurable disease.

    I hope you have found peace with your loss.

    • IowaBettyG

      Diane, I’m not sure if you are addressing me or Susan Williams, but thank you for your comments.

      My heartfelt sympathies to you on the loss of your husband 6 wks. ago.

      Did you have a BRAIN autopsy done to verify what you were told was 100% accurate?

      If YES, who did it?

      It was interesting also that he too had LUNG cancer like my husband was diagnosed with 2 nights before he suddenly passed!!

      Best wishes; glad you received info above from both of us that sooths an answers many questions inside your mind …. did you do the right things & pursuing his illness.

      Hugs/prayers always,
      Betty Gordon
      Iowa
      LYME/LEWY body dementia widow

      • diane

        I was addressing Susan and everyone who sadly has been touched by this. We both had screening CT scans last August at which time Alan was found to have stage 4 lung cancer. He was asymptomaric for that but had debilitating pain in his leg and groin. Like Robin Williams he had constipation, urinary issues and confusion at times and walked very slowly with a shuffle. He was also short of breath and could only walk short distances. He was very agitated. We saw countless specialists and LBD was only diagnosed shortly before his death. He had a CT scan of his brain and the. Eurologist said the rigidity in his body along with that was the basis of the diagnosis. He went to hospice after that and I was told autopsy was not necessary. His death certificate showed cause of death as lung cancer so statistically LBD was not cause of death. He had just about every symptom and was hallucinating towards the end.

        I am sorry you too are a widow of this. Thank you for reaching out to me. Diane/ CT widow lung cancer LBD.

      • diane

        Betty, I should note that I suffered from Lyme disease about 30 years ago. It was a late diagnosis as I never had the classic red bullet or was aware of the bite. My husband had never been diagnosed with Lyme. I have a good friend who has suffered with the long term effects of Lyme and is part of an ongoing study at Yale. I sent her this link and discussion to share with her doctors.

        • IowaBettyG

          diane, thanks for clarifying who you were addressing 😉

          interesting you have a friend in an ongoing YALE study….long term effects.

          i’m sure you know this but lyme CAN BE sexually transmitted; there is proof of this.

          interesting also the your hubby’s DC shows lung cancer also WITHOUT lewy body dementia being an influential reason for his death too.

          thanks for sharing additional info above. bettyg…back to bed.

          • diane

            Thank you for all of your excellent information Betty. I did not know that it could be sexually transmitted. If that is the case Alan may have contracted it from me or vice versa. I remember being on antibiotics for six weeks. We had a family of deer living in the woods behind our house for a long time. They would graze close to the house. I think I may have contracted it from them. However, we were sailors and in the summer visited all the places with high tick populations.
            In looking at his CT of the brain there were masses of solid gray area which Dr Brooks at Stamford Hospital said was consistent with LBD. His oncologist at Sloan Kettering said his decline was not for the lung cancer and something else was going on but he did not know what it was as it was not his field. It is very difficult as doctors are so specialized to put these diseases together as to symptoms and causes.
            He lost 80 lbs. and in the end we chose not to,give him a feeding tube as none of his diseases were curable.

          • IowaBettyG

            diane,
            had you considered trying to get your husband’s death certificate amended since he was given LEWY body dementia which contributed to his death in addition to the lung cancer?

            i know; your pain, sorrow, and grief is current. it didn’t hit me until my middle brother was diagnosed with stage 4 pancreatic cancer 1 yr. ago april fool’s day!!

            when callling him to discuss his sudden illnes, i just wept and wept; it hit me then!!

            diane, thank you for sharing more details of your husband’s illness/death.

            i too would not have prolonged his death either as you chose.

            best wishes to you/yours,

            bettyg, iowa
            lyme, lewy body dementia, parkinson’s, cancer actvist

          • diane

            I am not going to amend the certificate. I am dealing with too much right now. I do want yo pursue the trail you gave me as to whether and how his diseases may be connected. I would like to discuss with the oncologist whether he has any experience with this. As Sloan Kettering has very rigid time frames which is frustrating I do not know that he would be willing to get involved in this question. Everything deteriorated so quickly I was only focused on keeping him alive, trying to deal with the weight loss and encouraging him to eat. I did not understand what was going on in his mind. Neither did most doctors until he exhibited severe symptoms. In your research, have you found any evidence that this could be hereditary? His mother had dementia and lived to 89. I recall he had a cousin who suffered from dementia at an earlier age. It concerns me for my daughters. Thanks, Diane

          • betty g

            I suggest you email tom grier; he would be the best source for congenital. I think he started this post.

            I understand about everything you are under.. Betty

  • june conway beeby

    This is a common disaster in human lives. The problem is that newer science has found that decades old (maybe centuries-old) mistakes about the true biological nature of serious (and mild) mental illnesses took hold of the entire world. It boggles the mind to realize that sociology instead of science became foremost in our minds as a straight path to curing human neurological diseases. The best way to understand how this mistake began and grew (with the support of mesmerized Freud followers). I recommend a reading of science writer Jay Ingram’s book entitled “Fatal Flaws: How a Misfolded Protein Baffled Scientists and Changed the Way We Look at the Brain”. ISBN 978-1-44341-212-4

  • june conway beeby

    Governments, scientists, medical professionals , universities, scientific researchers, just about any one that we citizens depend on for health care and protection against chronic brain diseases caused by viruses, parasites, prions or other not yet identified molecules have badly missed the clues that these deadly microbes can reside in human brains until they incubate (much later) to torment humans –often driving them to suicide to escape their Incurable microscopic infections.
    These ‘terrorists’ inside Robin William’s brain were recently uncovered in his autopsy. But scientific research has also uncovered the same kind of biological root causes of schizophrenia at autopsies of their suicides.
    Our governments should move quickly to prevent these microbes from driving citizens into insanity. Massive scientific brain research is one approach we should first consider and then bring the same amount of scientific research funds to bear on these brain diseases as we did with AIDS, Ebola and intensive scientific research attention to serious mental illnesses and viruses that could bring more data for the possibility of infectious madness– which many scientists believe already.

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