“The terrorist inside my husband’s brain”

In the last couple of days, lots of friends (who remember my connection with Lewy Body Dementia) and a very long-time LBD caregiver support group member have emailed me news of Susan Schneider’s editorial.  Ms. Schneider is the widow of Robin Williams.  Robin Williams was diagnosed during life with Parkinson’s Disease.  She suggests he didn’t really believe the diagnosis.  He wanted to know if he had Alzheimer’s, dementia, or schizophrenia.  Upon brain autopsy, it was found he had Lewy Body Dementia.

Note that Mr. Williams’s brain was not donated for research but autopsied.  Of course Brain Support Network encourages brain donation as that way the brain tissue is preserved for future research.

In describing the disorder that Mr. Williams had, Ms. Schneider uses the term “Lewy body disease.”  As she notes in the editorial, technically “Lewy body disease” is a term that includes Parkinson’s Disease.  PD is the most common Lewy body disease.  When she indicates that 1.5 million Americans suffer from Lewy body disease, this number includes the one million people suffering from PD.

Ms. Schneider’s editorial in the journal Neurology notes that Robin Williams suffered from delusions, extreme anxiety, fear, memory problems, and many other non-motor symptoms.  He never reported having hallucinations but she believes he must’ve had them.  And she believes he was keeping other symptoms to himself as well.

She reports that the “loss of memory and inability to control his anxiety was devastating to him.”  It seems that she regretted giving Mr. Williams the antipsychotic prescribed to him for a panic attack.  She learned later that those with LBD can be extremely sensitive to medication; indeed, Mr. Williams’s reactions to medication were unpredictable.

In the editorial, Ms. Schneider says:  “In early May, …he came home from Vancouver—like a 747 airplane coming in with no landing gear. I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. … I will never know the true depth of his suffering, nor just how hard he was fighting. … Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it  back.”

She points out that if Mr. Williams had been given an accurate diagnosis during life, perhaps she would have been comforted with that knowledge:  “How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”

But, then she asks if a diagnosis during life would’ve made a difference.  She says: “But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.”

Ms. Schneider’s editorial is written for neurologists and researchers, and was published in the journal Neurology.  You can find her lengthy but wonderful editorial here:


The terrorist inside my husband’s brain
Susan Schneider Williams, BFA
September 27, 2016

You can find a good Huffington Post article here:


And you can find a good Washington Post article here: