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SPECIAL EDITORIAL
Susan SchneiderWilliams BFA
Correspondence toS Schneider Williamssusansusanschneiderfineartcom
Neurologyreg 2016871308ndash1311
The terrorist inside my husbandrsquos brain
I am writing to share a story with you specifically foryou My hope is that it will help you understand yourpatients along with their spouses and caregivers a littlemore And as for the research you do perhaps this willadd a few more faces behind the why you do what youdo I am sure there are already so many
This is a personal story sadly tragic and heart-breaking but by sharing this information with youI know that you can help make a difference in thelives of others
As you may know my husband Robin Williamshad the little-known but deadly Lewy body disease(LBD) He died from suicide in 2014 at the end ofan intense confusing and relatively swift persecutionat the hand of this diseasersquos symptoms and pathologyHe was not alone in his traumatic experience withthis neurologic disease As you may know almost 15million nationwide are suffering similarly right now
Although not alone his case was extreme Notuntil the coronerrsquos report 3 months after his deathwould I learn that it was diffuse LBD that took himAll 4 of the doctors I met with afterwards and whohad reviewed his records indicated his was one of theworst pathologies they had seen He had about 40loss of dopamine neurons and almost no neuronswere free of Lewy bodies throughout the entire brainand brainstem
Robin is and will always be a larger-than-life spiritwho was inside the body of a normal man witha human brain He just happened to be that 1 in 6who is affected by brain disease
Not only did I lose my husband to LBD I lost mybest friend Robin and I had in each other a safe har-bor of unconditional love that we had both alwayslonged for For 7 years together we got to tell eachother our greatest hopes and fears without any judg-ment just safety As we said often to one anotherwe were each otherrsquos anchor and mojo that magicalelixir of feeling grounded and inspired at the sametime by each otherrsquos presence
One of my favorite bedrock things we would dotogether was review how our days went Often thiswas more than just at the end of the day It did notmatter if we were both working at home traveling
together or if he was on the road We would discussour joys and triumphs our fears and insecurities andour concerns Any obstacles life threw at us individu-ally or as a couple were somehow surmountablebecause we had each other
When LBD began sending a firestorm of symp-toms our way this foundation of friendship and lovewas our armor
The colors were changing and the air was crisp itwas already late October of 2013 and our second wed-ding anniversary Robin had been under his doctorsrsquocare He had been struggling with symptoms thatseemed unrelated constipation urinary difficultyheartburn sleeplessness and insomnia and a poorsense of smellmdashand lots of stress He also had a slighttremor in his left hand that would come and go Forthe time being that was attributed to a previous shoul-der injury
On this particular weekend he started having gutdiscomfort Having been by my husbandrsquos side formany years already I knew his normal reactions whenit came to fear and anxiety What would follow wasmarkedly out of character for him His fear and anx-iety skyrocketed to a point that was alarming I won-dered privately Is my husband a hypochondriac Notuntil after Robin left us would I discover that a suddenand prolonged spike in fear and anxiety can be anearly indication of LBD
He was tested for diverticulitis and the results werenegative Like the rest of the symptoms that followedthey seemed to come and go at random times Somesymptoms were more prevalent than others but theseincreased in frequency and severity over the next10 months
By wintertime problems with paranoia delusionsand looping insomnia memory and high cortisollevelsmdashjust to name a fewmdashwere settling in hardPsychotherapy and other medical help was becominga constant in trying to manage and solve these seem-ingly disparate conditions
I was getting accustomed to the two of us spend-ing more time in reviewing our days The subjectsthough were starting to fall predominantly in the cat-egory of fear and anxiety These concerns that used to
From Susan Schneider Fine Art Marin County CA
Go to Neurologyorg for full disclosures Funding information and disclosures deemed relevant by the author if any are provided at the end of the editorial
1308 copy 2016 American Academy of Neurology
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
have a normal range of tenor were beginning to lodgeat a high frequency for him Once the coronerrsquosreport was reviewed a doctor was able to point outto me that there was a high concentration of Lewybodies within the amygdala This likely caused theacute paranoia and out-of-character emotional re-sponses he was having How I wish he could haveknown why he was struggling that it was not a weak-ness in his heart spirit or character
In early April Robin had a panic attack He was inVancouver filming Night at the Museum 3 His doc-tor recommended an antipsychotic medication tohelp with the anxiety It seemed to make things betterin some ways but far worse in others Quickly wesearched for something else Not until after he left uswould I discover that antipsychotic medications oftenmake things worse for people with LBD Also Robinhad a high sensitivity to medications and sometimeshis reactions were unpredictable This is apparentlya common theme in people with LBD
During the filming of the movie Robin was hav-ing trouble remembering even one line for his sceneswhile just 3 years prior he had played in a full 5-month season of the Broadway production BengalTiger at the Baghdad Zoo often doing two showsa day with hundreds of linesmdashand not one mistakeThis loss of memory and inability to control his anx-iety was devastating to him
While I was on a photo shoot at Phoenix Lakecapturing scenes to paint he called several timesHe was very concerned with insecurities he was hav-ing about himself and interactions with others Wewent over every detail The fears were unfoundedand I could not convince him otherwise I was power-less in helping him see his own brilliance
For the first time my own reasoning had no effectin helping my husband find the light through thetunnels of his fear I felt his disbelief in the truths Iwas saying My heart and my hope were shatteredtemporarily We had reached a place we had neverbeen before My husband was trapped in the twistedarchitecture of his neurons and no matter what I did Icould not pull him out
In early May the movie wrapped and he camehome from Vancouvermdashlike a 747 airplane comingin with no landing gear I have since learned that peo-ple with LBD who are highly intelligent may appear tobe okay for longer initially but then it is as though thedam suddenly breaks and they cannot hold it backanymore In Robinrsquos case on top of being a geniushe was a Julliard-trained actor I will never know thetrue depth of his suffering nor just how hard he wasfighting But fromwhere I stood I saw the bravest manin the world playing the hardest role of his life
Robin was losing his mind and he was aware of itCan you imagine the pain he felt as he experienced
himself disintegrating And not from something hewould ever know the name of or understand Nei-ther he nor anyone could stop itmdashno amount ofintelligence or love could hold it back
Powerless and frozen I stood in the darkness ofnot knowing what was happening to my husbandWas it a single source a single terrorist or was thisa combo pack of disease raining down on him
He kept saying ldquoI just want to reboot my brainrdquoDoctor appointments testing and psychiatry kept usin perpetual motion Countless blood tests urinetests plus rechecks of cortisol levels and lymph nodesA brain scan was done looking for a possible tumoron his pituitary gland and his cardiologist recheckedhis heart Everything came back negative except forhigh cortisol levels We wanted to be happy about allthe negative test results but Robin and I both hada deep sense that something was terribly wrong
On May 28th he was diagnosed with Parkinsondisease (PD)
We had an answer My heart swelled with hopeBut somehow I knew Robin was not buying it
When we were in the neurologistrsquos office learningexactly what this meant Robin had a chance to ask someburning questions He asked ldquoDo I have AlzheimerrsquosDementia Am I schizophrenicrdquo The answers were thebest we could have gotten No no and no There wereno indications of these other diseases It is apparent tome now that he was most likely keeping the depth of hissymptoms to himself
Robin continued doing all the right thingsmdashtherapyphysical therapy bike riding and working out with histrainer He used all the skills he picked up and had fine-tuned from the Dan Anderson retreat in Minnesota likedeeper 12-step work meditation and yoga We went tosee a specialist at Stanford University who taught himself-hypnosis techniques to quell the irrational fears andanxiety Nothing seemed to alleviate his symptoms forlong
Throughout all of this Robin was clean and soberand somehow we sprinkled those summer months withhappiness joy and the simple things we loved mealsand birthday celebrations with family and friends med-itating together massages and movies but mostly justholding each otherrsquos hand
Robin was growing weary The parkinsonian maskwas ever present and his voice was weakened His lefthand tremor was continuous now and he had a slowshuffling gait He hated that he could not find thewords he wanted in conversations He would thrashat night and still had terrible insomnia At times hewould find himself stuck in a frozen stance unable tomove and frustrated when he came out of it He wasbeginning to have trouble with visual and spatial abili-ties in the way of judging distance and depth His lossof basic reasoning just added to his growing confusion
Neurology 87 September 27 2016 1309
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
It felt like he was drowning in his symptoms and Iwas drowning along with him Typically the plethoraof LBD symptoms appear and disappear at randomtimesmdasheven throughout the course of a day I expe-rienced my brilliant husband being lucid with clearreasoning 1 minute and then 5 minutes later blanklost in confusion
Prior history can also complicate a diagnosis InRobinrsquos case he had a history of depression that hadnot been active for 6 years So when he showed signs ofdepression just months before he left it was interpretedas a satellite issue maybe connected to PD
Throughout the course of Robinrsquos battle he had expe-rienced nearly all of the 40-plus symptoms of LBDexcept for one He never said he had hallucinations
A year after he left in speaking with one of thedoctors who reviewed his records it became evidentthat most likely he did have hallucinations but waskeeping that to himself
It was nearing the end of July and we were toldRobin would need to have inpatient neurocognitivetesting done in order to evaluate the mood disorderaspect of his condition In the meantime his medica-tion was switched from Mirapex to Sinemet in aneffort to reduce symptoms We were assured Robinwould be feeling better soon and that his PD was earlyand mild We felt hopeful again What we did notknow was that when these diseases ldquostartrdquo (are diag-nosed) they have actually been going on for a long time
By now our combined sleep deficit was becominga danger to both of us We were instructed to sleepapart until we could catch up on our sleep The goalwas to have him begin inpatient testing free of thesleep-deprived state he was in
As the second weekend in August approached itseemed his delusional looping was calming downMaybe the switch in medications was working Wedid all the things we love on Saturday day and intothe evening it was perfectmdashlike one long date By theend of Sunday I was feeling that he was getting better
When we retired for sleep in our customary waymy husband said to me ldquoGoodnight my loverdquo andwaited for my familiar reply ldquoGoodnight my loverdquo
His words still echo through my heart todayMonday August 11 Robin was goneAfter Robin left time has never functioned the
same for me My search for meaning has replicatedlike an inescapable spring throughout nearly everyaspect of my world including the most mundane
Robin and I had begun our unplanned research onthe brain through the door of blind experience Dur-ing the final months we shared together our sightswere locked fast on identifying and vanquishing theterrorist within his brain Since then I have contin-ued our research but on the other side of that experi-ence in the realm of the science behind it
Three months after Robinrsquos death the autopsyreport was finally ready for review When the forensicpathologist and coronerrsquos deputy asked if I was sur-prised by the diffuse LBD pathology I said ldquoAbso-lutely notrdquo even though I had no idea what it meantat the time The mere fact that something hadinvaded nearly every region of my husbandrsquos brainmade perfect sense to me
In the year that followed I set out to expand myview and understanding of LBD I met with medicalprofessionals who had reviewed Robinrsquos last 2 yearsof medical records the coronerrsquos report and brainscans Their reactions were all the same that Robinrsquoswas one of the worst LBD pathologies they had seenand that there was nothing else anyone could havedone Our entire medical team was on the right trackand we would have gotten there eventually In fact wewere probably close
But would having a diagnosis while he was alivereally have made a difference when there is no cureWe will never know the answer to this I am not con-vinced that the knowledge would have donemuchmorethan prolong Robinrsquos agony while he would surelybecome one of the most famous test subjects of newmedicines and ongoing medical trials Even if we expe-rienced some level of comfort in knowing the name andfleeting hope from temporary comfort with medica-tions the terrorist was still going to kill him There isno cure and Robinrsquos steep and rapid decline was assured
The massive proliferation of Lewy bodies through-out his brain had done so much damage to neuronsand neurotransmitters that in effect you could sayhe had chemical warfare in his brain
One professional stated ldquoIt was as if he had cancerthroughout every organ of his bodyrdquo The key prob-lem seemed to be that no one could correctly inter-pret Robinrsquos symptoms in time
I was driven to learn everything I could about thisdisease that I finally had the name of Some of what Ilearned surprised me
One neuropathologist described LBD and PD asbeing at opposite ends of a disease spectrum Thatspectrum is based on something they share in com-mon the presence of Lewy bodiesmdashthe unnaturalclumping of the normal protein a-synuclein withinbrain neurons I was also surprised to learn that a per-son is diagnosed with LBD vs PD depending onwhich symptoms present first
After months and months I was finally able to bespecific about Robinrsquos disease Clinically he had PDbut pathologically he had diffuse LBD The predom-inant symptoms Robin had were not physicalmdashthepathology more than backed that up However youlook at itmdashthe presence of Lewy bodies took his life
The journey Robin and I were on together has ledme to knowing the American Academy of Neurology
1310 Neurology 87 September 27 2016
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
and other groups and doctors It has led me to dis-cover the American Brain Foundation where I nowserve on the Board of Directors
This is where you come into the storyHopefully from this sharing of our experience you
will be inspired to turn Robinrsquos suffering into some-thing meaningful through your work and wisdom Itis my belief that when healing comes out of Robinrsquosexperience he will not have battled and died in vainYou are uniquely positioned to help with this
I know you have accomplished much already inthe areas of research and discovery toward cures inbrain disease And I am sure at times the progresshas felt painfully slow Do not give up Trust thata cascade of cures and discovery is imminent in allareas of brain disease and you will be a part of makingthat happen
If only Robin could have met you He would haveloved youmdashnot just because he was a genius and
enjoyed science and discovery but because he wouldhave found a lot of material within your work to usein entertaining his audiences including the troops Infact the most repeat character role he played through-out his career was a doctor albeit different forms ofpractice
You and your work have ignited a spark within theregion of my brain where curiosity and interest lie andwithin my heart where hope lives I want to followyou Not like a crazed fan but like someone whoknows you just might be the one who discovers thecure for LBD and other brain diseases
Thank you for what you have done and for whatyou are about to do
DISCLOSURESusan Schneider Williams serves on the Board of Directors for the Amer-
ican Brain Foundation (americanbrainfoundationorg) but reports no
disclosures relevant to the manuscript Go to Neurologyorg for full
disclosures
Neurology 87 September 27 2016 1311
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
DOI 101212WNL00000000000031622016871308-1311 Neurology
Susan Schneider WilliamsThe terrorist inside my husbands brain
This information is current as of September 26 2016
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
have a normal range of tenor were beginning to lodgeat a high frequency for him Once the coronerrsquosreport was reviewed a doctor was able to point outto me that there was a high concentration of Lewybodies within the amygdala This likely caused theacute paranoia and out-of-character emotional re-sponses he was having How I wish he could haveknown why he was struggling that it was not a weak-ness in his heart spirit or character
In early April Robin had a panic attack He was inVancouver filming Night at the Museum 3 His doc-tor recommended an antipsychotic medication tohelp with the anxiety It seemed to make things betterin some ways but far worse in others Quickly wesearched for something else Not until after he left uswould I discover that antipsychotic medications oftenmake things worse for people with LBD Also Robinhad a high sensitivity to medications and sometimeshis reactions were unpredictable This is apparentlya common theme in people with LBD
During the filming of the movie Robin was hav-ing trouble remembering even one line for his sceneswhile just 3 years prior he had played in a full 5-month season of the Broadway production BengalTiger at the Baghdad Zoo often doing two showsa day with hundreds of linesmdashand not one mistakeThis loss of memory and inability to control his anx-iety was devastating to him
While I was on a photo shoot at Phoenix Lakecapturing scenes to paint he called several timesHe was very concerned with insecurities he was hav-ing about himself and interactions with others Wewent over every detail The fears were unfoundedand I could not convince him otherwise I was power-less in helping him see his own brilliance
For the first time my own reasoning had no effectin helping my husband find the light through thetunnels of his fear I felt his disbelief in the truths Iwas saying My heart and my hope were shatteredtemporarily We had reached a place we had neverbeen before My husband was trapped in the twistedarchitecture of his neurons and no matter what I did Icould not pull him out
In early May the movie wrapped and he camehome from Vancouvermdashlike a 747 airplane comingin with no landing gear I have since learned that peo-ple with LBD who are highly intelligent may appear tobe okay for longer initially but then it is as though thedam suddenly breaks and they cannot hold it backanymore In Robinrsquos case on top of being a geniushe was a Julliard-trained actor I will never know thetrue depth of his suffering nor just how hard he wasfighting But fromwhere I stood I saw the bravest manin the world playing the hardest role of his life
Robin was losing his mind and he was aware of itCan you imagine the pain he felt as he experienced
himself disintegrating And not from something hewould ever know the name of or understand Nei-ther he nor anyone could stop itmdashno amount ofintelligence or love could hold it back
Powerless and frozen I stood in the darkness ofnot knowing what was happening to my husbandWas it a single source a single terrorist or was thisa combo pack of disease raining down on him
He kept saying ldquoI just want to reboot my brainrdquoDoctor appointments testing and psychiatry kept usin perpetual motion Countless blood tests urinetests plus rechecks of cortisol levels and lymph nodesA brain scan was done looking for a possible tumoron his pituitary gland and his cardiologist recheckedhis heart Everything came back negative except forhigh cortisol levels We wanted to be happy about allthe negative test results but Robin and I both hada deep sense that something was terribly wrong
On May 28th he was diagnosed with Parkinsondisease (PD)
We had an answer My heart swelled with hopeBut somehow I knew Robin was not buying it
When we were in the neurologistrsquos office learningexactly what this meant Robin had a chance to ask someburning questions He asked ldquoDo I have AlzheimerrsquosDementia Am I schizophrenicrdquo The answers were thebest we could have gotten No no and no There wereno indications of these other diseases It is apparent tome now that he was most likely keeping the depth of hissymptoms to himself
Robin continued doing all the right thingsmdashtherapyphysical therapy bike riding and working out with histrainer He used all the skills he picked up and had fine-tuned from the Dan Anderson retreat in Minnesota likedeeper 12-step work meditation and yoga We went tosee a specialist at Stanford University who taught himself-hypnosis techniques to quell the irrational fears andanxiety Nothing seemed to alleviate his symptoms forlong
Throughout all of this Robin was clean and soberand somehow we sprinkled those summer months withhappiness joy and the simple things we loved mealsand birthday celebrations with family and friends med-itating together massages and movies but mostly justholding each otherrsquos hand
Robin was growing weary The parkinsonian maskwas ever present and his voice was weakened His lefthand tremor was continuous now and he had a slowshuffling gait He hated that he could not find thewords he wanted in conversations He would thrashat night and still had terrible insomnia At times hewould find himself stuck in a frozen stance unable tomove and frustrated when he came out of it He wasbeginning to have trouble with visual and spatial abili-ties in the way of judging distance and depth His lossof basic reasoning just added to his growing confusion
Neurology 87 September 27 2016 1309
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
It felt like he was drowning in his symptoms and Iwas drowning along with him Typically the plethoraof LBD symptoms appear and disappear at randomtimesmdasheven throughout the course of a day I expe-rienced my brilliant husband being lucid with clearreasoning 1 minute and then 5 minutes later blanklost in confusion
Prior history can also complicate a diagnosis InRobinrsquos case he had a history of depression that hadnot been active for 6 years So when he showed signs ofdepression just months before he left it was interpretedas a satellite issue maybe connected to PD
Throughout the course of Robinrsquos battle he had expe-rienced nearly all of the 40-plus symptoms of LBDexcept for one He never said he had hallucinations
A year after he left in speaking with one of thedoctors who reviewed his records it became evidentthat most likely he did have hallucinations but waskeeping that to himself
It was nearing the end of July and we were toldRobin would need to have inpatient neurocognitivetesting done in order to evaluate the mood disorderaspect of his condition In the meantime his medica-tion was switched from Mirapex to Sinemet in aneffort to reduce symptoms We were assured Robinwould be feeling better soon and that his PD was earlyand mild We felt hopeful again What we did notknow was that when these diseases ldquostartrdquo (are diag-nosed) they have actually been going on for a long time
By now our combined sleep deficit was becominga danger to both of us We were instructed to sleepapart until we could catch up on our sleep The goalwas to have him begin inpatient testing free of thesleep-deprived state he was in
As the second weekend in August approached itseemed his delusional looping was calming downMaybe the switch in medications was working Wedid all the things we love on Saturday day and intothe evening it was perfectmdashlike one long date By theend of Sunday I was feeling that he was getting better
When we retired for sleep in our customary waymy husband said to me ldquoGoodnight my loverdquo andwaited for my familiar reply ldquoGoodnight my loverdquo
His words still echo through my heart todayMonday August 11 Robin was goneAfter Robin left time has never functioned the
same for me My search for meaning has replicatedlike an inescapable spring throughout nearly everyaspect of my world including the most mundane
Robin and I had begun our unplanned research onthe brain through the door of blind experience Dur-ing the final months we shared together our sightswere locked fast on identifying and vanquishing theterrorist within his brain Since then I have contin-ued our research but on the other side of that experi-ence in the realm of the science behind it
Three months after Robinrsquos death the autopsyreport was finally ready for review When the forensicpathologist and coronerrsquos deputy asked if I was sur-prised by the diffuse LBD pathology I said ldquoAbso-lutely notrdquo even though I had no idea what it meantat the time The mere fact that something hadinvaded nearly every region of my husbandrsquos brainmade perfect sense to me
In the year that followed I set out to expand myview and understanding of LBD I met with medicalprofessionals who had reviewed Robinrsquos last 2 yearsof medical records the coronerrsquos report and brainscans Their reactions were all the same that Robinrsquoswas one of the worst LBD pathologies they had seenand that there was nothing else anyone could havedone Our entire medical team was on the right trackand we would have gotten there eventually In fact wewere probably close
But would having a diagnosis while he was alivereally have made a difference when there is no cureWe will never know the answer to this I am not con-vinced that the knowledge would have donemuchmorethan prolong Robinrsquos agony while he would surelybecome one of the most famous test subjects of newmedicines and ongoing medical trials Even if we expe-rienced some level of comfort in knowing the name andfleeting hope from temporary comfort with medica-tions the terrorist was still going to kill him There isno cure and Robinrsquos steep and rapid decline was assured
The massive proliferation of Lewy bodies through-out his brain had done so much damage to neuronsand neurotransmitters that in effect you could sayhe had chemical warfare in his brain
One professional stated ldquoIt was as if he had cancerthroughout every organ of his bodyrdquo The key prob-lem seemed to be that no one could correctly inter-pret Robinrsquos symptoms in time
I was driven to learn everything I could about thisdisease that I finally had the name of Some of what Ilearned surprised me
One neuropathologist described LBD and PD asbeing at opposite ends of a disease spectrum Thatspectrum is based on something they share in com-mon the presence of Lewy bodiesmdashthe unnaturalclumping of the normal protein a-synuclein withinbrain neurons I was also surprised to learn that a per-son is diagnosed with LBD vs PD depending onwhich symptoms present first
After months and months I was finally able to bespecific about Robinrsquos disease Clinically he had PDbut pathologically he had diffuse LBD The predom-inant symptoms Robin had were not physicalmdashthepathology more than backed that up However youlook at itmdashthe presence of Lewy bodies took his life
The journey Robin and I were on together has ledme to knowing the American Academy of Neurology
1310 Neurology 87 September 27 2016
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
and other groups and doctors It has led me to dis-cover the American Brain Foundation where I nowserve on the Board of Directors
This is where you come into the storyHopefully from this sharing of our experience you
will be inspired to turn Robinrsquos suffering into some-thing meaningful through your work and wisdom Itis my belief that when healing comes out of Robinrsquosexperience he will not have battled and died in vainYou are uniquely positioned to help with this
I know you have accomplished much already inthe areas of research and discovery toward cures inbrain disease And I am sure at times the progresshas felt painfully slow Do not give up Trust thata cascade of cures and discovery is imminent in allareas of brain disease and you will be a part of makingthat happen
If only Robin could have met you He would haveloved youmdashnot just because he was a genius and
enjoyed science and discovery but because he wouldhave found a lot of material within your work to usein entertaining his audiences including the troops Infact the most repeat character role he played through-out his career was a doctor albeit different forms ofpractice
You and your work have ignited a spark within theregion of my brain where curiosity and interest lie andwithin my heart where hope lives I want to followyou Not like a crazed fan but like someone whoknows you just might be the one who discovers thecure for LBD and other brain diseases
Thank you for what you have done and for whatyou are about to do
DISCLOSURESusan Schneider Williams serves on the Board of Directors for the Amer-
ican Brain Foundation (americanbrainfoundationorg) but reports no
disclosures relevant to the manuscript Go to Neurologyorg for full
disclosures
Neurology 87 September 27 2016 1311
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
DOI 101212WNL00000000000031622016871308-1311 Neurology
Susan Schneider WilliamsThe terrorist inside my husbands brain
This information is current as of September 26 2016
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
It felt like he was drowning in his symptoms and Iwas drowning along with him Typically the plethoraof LBD symptoms appear and disappear at randomtimesmdasheven throughout the course of a day I expe-rienced my brilliant husband being lucid with clearreasoning 1 minute and then 5 minutes later blanklost in confusion
Prior history can also complicate a diagnosis InRobinrsquos case he had a history of depression that hadnot been active for 6 years So when he showed signs ofdepression just months before he left it was interpretedas a satellite issue maybe connected to PD
Throughout the course of Robinrsquos battle he had expe-rienced nearly all of the 40-plus symptoms of LBDexcept for one He never said he had hallucinations
A year after he left in speaking with one of thedoctors who reviewed his records it became evidentthat most likely he did have hallucinations but waskeeping that to himself
It was nearing the end of July and we were toldRobin would need to have inpatient neurocognitivetesting done in order to evaluate the mood disorderaspect of his condition In the meantime his medica-tion was switched from Mirapex to Sinemet in aneffort to reduce symptoms We were assured Robinwould be feeling better soon and that his PD was earlyand mild We felt hopeful again What we did notknow was that when these diseases ldquostartrdquo (are diag-nosed) they have actually been going on for a long time
By now our combined sleep deficit was becominga danger to both of us We were instructed to sleepapart until we could catch up on our sleep The goalwas to have him begin inpatient testing free of thesleep-deprived state he was in
As the second weekend in August approached itseemed his delusional looping was calming downMaybe the switch in medications was working Wedid all the things we love on Saturday day and intothe evening it was perfectmdashlike one long date By theend of Sunday I was feeling that he was getting better
When we retired for sleep in our customary waymy husband said to me ldquoGoodnight my loverdquo andwaited for my familiar reply ldquoGoodnight my loverdquo
His words still echo through my heart todayMonday August 11 Robin was goneAfter Robin left time has never functioned the
same for me My search for meaning has replicatedlike an inescapable spring throughout nearly everyaspect of my world including the most mundane
Robin and I had begun our unplanned research onthe brain through the door of blind experience Dur-ing the final months we shared together our sightswere locked fast on identifying and vanquishing theterrorist within his brain Since then I have contin-ued our research but on the other side of that experi-ence in the realm of the science behind it
Three months after Robinrsquos death the autopsyreport was finally ready for review When the forensicpathologist and coronerrsquos deputy asked if I was sur-prised by the diffuse LBD pathology I said ldquoAbso-lutely notrdquo even though I had no idea what it meantat the time The mere fact that something hadinvaded nearly every region of my husbandrsquos brainmade perfect sense to me
In the year that followed I set out to expand myview and understanding of LBD I met with medicalprofessionals who had reviewed Robinrsquos last 2 yearsof medical records the coronerrsquos report and brainscans Their reactions were all the same that Robinrsquoswas one of the worst LBD pathologies they had seenand that there was nothing else anyone could havedone Our entire medical team was on the right trackand we would have gotten there eventually In fact wewere probably close
But would having a diagnosis while he was alivereally have made a difference when there is no cureWe will never know the answer to this I am not con-vinced that the knowledge would have donemuchmorethan prolong Robinrsquos agony while he would surelybecome one of the most famous test subjects of newmedicines and ongoing medical trials Even if we expe-rienced some level of comfort in knowing the name andfleeting hope from temporary comfort with medica-tions the terrorist was still going to kill him There isno cure and Robinrsquos steep and rapid decline was assured
The massive proliferation of Lewy bodies through-out his brain had done so much damage to neuronsand neurotransmitters that in effect you could sayhe had chemical warfare in his brain
One professional stated ldquoIt was as if he had cancerthroughout every organ of his bodyrdquo The key prob-lem seemed to be that no one could correctly inter-pret Robinrsquos symptoms in time
I was driven to learn everything I could about thisdisease that I finally had the name of Some of what Ilearned surprised me
One neuropathologist described LBD and PD asbeing at opposite ends of a disease spectrum Thatspectrum is based on something they share in com-mon the presence of Lewy bodiesmdashthe unnaturalclumping of the normal protein a-synuclein withinbrain neurons I was also surprised to learn that a per-son is diagnosed with LBD vs PD depending onwhich symptoms present first
After months and months I was finally able to bespecific about Robinrsquos disease Clinically he had PDbut pathologically he had diffuse LBD The predom-inant symptoms Robin had were not physicalmdashthepathology more than backed that up However youlook at itmdashthe presence of Lewy bodies took his life
The journey Robin and I were on together has ledme to knowing the American Academy of Neurology
1310 Neurology 87 September 27 2016
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
and other groups and doctors It has led me to dis-cover the American Brain Foundation where I nowserve on the Board of Directors
This is where you come into the storyHopefully from this sharing of our experience you
will be inspired to turn Robinrsquos suffering into some-thing meaningful through your work and wisdom Itis my belief that when healing comes out of Robinrsquosexperience he will not have battled and died in vainYou are uniquely positioned to help with this
I know you have accomplished much already inthe areas of research and discovery toward cures inbrain disease And I am sure at times the progresshas felt painfully slow Do not give up Trust thata cascade of cures and discovery is imminent in allareas of brain disease and you will be a part of makingthat happen
If only Robin could have met you He would haveloved youmdashnot just because he was a genius and
enjoyed science and discovery but because he wouldhave found a lot of material within your work to usein entertaining his audiences including the troops Infact the most repeat character role he played through-out his career was a doctor albeit different forms ofpractice
You and your work have ignited a spark within theregion of my brain where curiosity and interest lie andwithin my heart where hope lives I want to followyou Not like a crazed fan but like someone whoknows you just might be the one who discovers thecure for LBD and other brain diseases
Thank you for what you have done and for whatyou are about to do
DISCLOSURESusan Schneider Williams serves on the Board of Directors for the Amer-
ican Brain Foundation (americanbrainfoundationorg) but reports no
disclosures relevant to the manuscript Go to Neurologyorg for full
disclosures
Neurology 87 September 27 2016 1311
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
DOI 101212WNL00000000000031622016871308-1311 Neurology
Susan Schneider WilliamsThe terrorist inside my husbands brain
This information is current as of September 26 2016
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
and other groups and doctors It has led me to dis-cover the American Brain Foundation where I nowserve on the Board of Directors
This is where you come into the storyHopefully from this sharing of our experience you
will be inspired to turn Robinrsquos suffering into some-thing meaningful through your work and wisdom Itis my belief that when healing comes out of Robinrsquosexperience he will not have battled and died in vainYou are uniquely positioned to help with this
I know you have accomplished much already inthe areas of research and discovery toward cures inbrain disease And I am sure at times the progresshas felt painfully slow Do not give up Trust thata cascade of cures and discovery is imminent in allareas of brain disease and you will be a part of makingthat happen
If only Robin could have met you He would haveloved youmdashnot just because he was a genius and
enjoyed science and discovery but because he wouldhave found a lot of material within your work to usein entertaining his audiences including the troops Infact the most repeat character role he played through-out his career was a doctor albeit different forms ofpractice
You and your work have ignited a spark within theregion of my brain where curiosity and interest lie andwithin my heart where hope lives I want to followyou Not like a crazed fan but like someone whoknows you just might be the one who discovers thecure for LBD and other brain diseases
Thank you for what you have done and for whatyou are about to do
DISCLOSURESusan Schneider Williams serves on the Board of Directors for the Amer-
ican Brain Foundation (americanbrainfoundationorg) but reports no
disclosures relevant to the manuscript Go to Neurologyorg for full
disclosures
Neurology 87 September 27 2016 1311
ordf 2016 American Academy of Neurology Unauthorized reproduction of this article is prohibited
DOI 101212WNL00000000000031622016871308-1311 Neurology
Susan Schneider WilliamsThe terrorist inside my husbands brain
This information is current as of September 26 2016
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
DOI 101212WNL00000000000031622016871308-1311 Neurology
Susan Schneider WilliamsThe terrorist inside my husbands brain
This information is current as of September 26 2016
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology
ServicesUpdated Information amp
httpnneurologyorgcontent87131308fullhtmlincluding high resolution figures can be found at
Supplementary Material
162DC1httpnneurologyorgcontentsuppl20160926WNL0000000000003Supplementary material can be found at
Citations httpnneurologyorgcontent87131308fullhtmlotherarticles
This article has been cited by 1 HighWire-hosted articles
Subspecialty Collections
httpnneurologyorgcgicollectiontremorTremor
httpnneurologyorgcgicollectionparkinsons_disease_parkinsonismParkinsons diseaseParkinsonism
httpnneurologyorgcgicollectiondementia_with_lewy_bodiesDementia with Lewy bodies
rs_dementiahttpnneurologyorgcgicollectionassessment_of_cognitive_disordeAssessment of cognitive disordersdementia
httpnneurologyorgcgicollectionall_cognitive_disorders_dementiaAll Cognitive DisordersDementiafollowing collection(s) This article along with others on similar topics appears in the
Permissions amp Licensing
httpnneurologyorgmiscaboutxhtmlpermissionsits entirety can be found online atInformation about reproducing this article in parts (figurestables) or in
Reprints
httpnneurologyorgmiscaddirxhtmlreprintsusInformation about ordering reprints can be found online
rights reserved Print ISSN 0028-3878 Online ISSN 1526-632X1951 it is now a weekly with 48 issues per year Copyright copy 2016 American Academy of Neurology All
reg is the official journal of the American Academy of Neurology Published continuously sinceNeurology