Search This Blog

Wednesday 1 September 2021

(25) PD misdiagnosis: Robin Williams & LBD "terrorism"

NB (25) above indicates the latest post & numerical order

To be or not to be...

I started writing this blog after watching the movie Awakenings (1990) a few times in 2019. As a parkinsed person I was fascinated by the trial and error approach to the treatment of Parkinson's Disease (PD) and the possible consequences due to PD medication. Subsequently, a review of that movie and a BBC documentary about the GDNF trial also involving a PD remedy became an important part of two early posts (3 and 4) of this blog. 

The movie Awakenings is about patients in a psychiatric hospital in New York who appear to be immobile and not responsive. They are mostly victims of encephalytis lethargica, a European epidemic that might have started during the early 1500s but only identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases and as the latter clinical phase resembled PD, a PD drug was used on the patients. Part of my original post is below.

"The movie starts with a young boy gradually becoming dysfunctional and one sees the impact on his life as a teenager. Fast-forward about 50 years and that child is one of a group of adults, played by Robert De Niro, who appears to be displaying PD-like symptoms in a psychiatric hospital. In an attempt to bring him and others out of their catatonic state, an experimental drug called L-dopa is prescribed by Dr Sayer, played by Robin Williams, who has already made startling observations of some of his patients. Although L-dopa was developed specifically for PD, the symptoms presented by patients with encephalitis lethargica are similar, hence the doctor's decision to prescribe it. Dr Sayer, prior to joining the psychiatric hospital, was a medical doctor and serious researcher..." 
Excerpt, Parkinson's: to be or not to be, (3) PD experiment in a movie, April 2020.

So, while encephalytis patients were 'displaying PD-like symptoms' they did not have PD. There was no misdiagnosis but, I suppose, reasonable assumptions made regarding the symptoms and possible treatment. There was a measure of effectiveness in prescribing L-Dopa but it came at the expense of other symptoms. PD is a complex neurological disease that has kept medical science guessing in the way that Covid-19 is doing right now. Sadly, Dr Sayer aka Robin Williams suffered the same fate as his patients in the movie: a misdiagnosis. A real life tragedy!  


Robin Williams' shadow of his former self

It is tragic that neurologists were unable to diagnose Robin Williams' symptoms accurately, because of the complex nature of Lewy Body Dementia (LBD). LBD is a progressive dementia that causes problems with mental abilities because of microscopic deposits in the brain that gradually disrupt its functioning. According to his wife, Susan Schneider Williams (in picture above), in a journal article published in Neurology, entitled The terrorist inside my husband's brain (September 2016) two years after his death, his suicide had been "at the end of an intense, confusing and relatively swift persecution at the hand of this disease's symptoms...". It was only when she received the coroner's report three months after his death, that she knew Robin had not had PD as diagnosed, but LBD. She states in the article that, according to that coroner, "almost no neurons were free of Lewy Bodies throughout the entire brain and brainstem".       

LBD, according to the NIH Medline Plus magazine, impacts on movement and sleep as well as creating hallucinations. It impacts severely on one's judgement, one's mental speed, thinking on one's feet and one's understanding. One goes from being rational and functional to being irrational and dysfunctional as a result of the disruption caused by the microscopic clumping of a protein in granular form. As a result, one's cognitive ability literally seeps out of one's brain. The illustration below depicts the seepage.  

Illustration of LBD, courtesy of NIH MedLine Plus magazine

Film roles versus Life's roles

It is significant that during Robin Williams' life he played the roles of alternative and critical thinking professionals. Each role portrayed characters in control of their thinking and their actions, although often in opposition to what would have been regarded as conventional. Some roles depicting this are that of a psychiatrist (Good Will Hunting), a physician (Patch Adams), a neurologist (Awakenings) an absent minded professor (Flubber) a Russian medical specialist (Nine Months) and a teacher (Dead Poets Society). In these roles, his characters generally sought an alternative approach to problem solving and resulted in some form of character building. 

In real life, in the few years leading up to his suicide on 11 August 2014, doctors and neurologists were unable to diagnose Robin's symptoms with any degree of certainty. They were unable to provide a 'Patch Adams' style bandaid to halt the mental retrogression. The tremors, insomnia and constipation, amongst other symptoms, led the medical specialists to believe that he had PD, so PD medication was prescribed. If this had been a scripted movie then the character Robin Williams should have survived. But he he couldn't. Susan recounts in her journal article "The massive proliferation of Lewy Bodies throughout his brain had done so much damage to his neurotransmitters...that he had chemical warfare in his brain." Terrorists had struck.

In the months leading to his death, his wife Susan describes in her article how he suffered with "paranoia, delusions...insomnia, memory and high cortisol levels...". Uncharacteristically, during a movie shoot of Night at the Museum 3 he struggled to remember his lines. He wished he was able to start life all over and once said to Susan "I just want to reboot my brain." However, the LBD terrorists had already infiltrated and taken his brain hostage...there was no turning back the clock.

Dear reader, I have been moved by Susan Schneider's article and if you know someone with PD, I recommend you read it as there are some similarities. Also, there are American and Australian documentaries on Robin Williams available online but two that stand out and are informative are these:

Till next time. Stay safe.