Robin Williams died because of 'a terrorist inside his brain’

Robin Williams was trapped inside his own rapidly-deteriorating brain, which was being overtaken by what his wife refers to as a "terrorist" — Lewy Body Disease.


Of all of the people who died in the last few years that I grew up watching or listening to, the one that hit me hardest was Robin Williams, who committed suicide on August 11, 2014. 

Many of us watched him evolve from his "Mork" character to a frenetic stand-up comic to the Vietnam radio show dude to the therapist who helped Matt Damon's character overcome child abuse to a cross-dressing helicopter Dad — and so many more roles, so many masterful performances. 

He was absolutely one of the finest actors and comedians to ever grace our culture. 

To help clear up just what her husband and love of her life faced those last several months, his wife Susan Schneider Williams recently penned a letter to the official journal of the American Academy of Neurology, entitled "The Terrorist Inside My Husband's Brain."

It's a truly harrowing account of what was happening in the brain of her late husband, and you can sense just how difficult it must have been in those last several months, as he suffered from what was first diagnosed as Parkinson's Disease, but was in fact Lewy Body Disease — which can spring from Parkinson's rather quickly. 

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.

Although not alone, his case was extreme. Not until the coroner's report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.

Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease."

A type of dementia, Lewy Body Disease is second only to Alzheimer's Disease as the most common form of dementia in humans. Its symptoms include: extreme variations in attention, alertness, and executive function (dementia); recurring hallucinations; R.E.M. sleep disorder (acting out dreams); repeated falls and fainting; delusions; rigid muscles; a shuffling walk; and transient, unexplained loss of consciousness. It appears closely related to Alzheimers as well as Parkinson's Disease. 

And — this is the kicker — there is no cure. If doctors had known what Robin Williams was suffering from, as his wife said in her letter:

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.

The massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain.

One professional stated, 'It was as if he had cancer throughout every organ of his body.' The key problem seemed to be that no one could correctly interpret Robin's symptoms in time."

One year after Robin's death, Susan appeared on Good Morning America to talk about what they knew then about the disease, and it sounds absolutely heartbreaking. 

Watch:

Thumbnail image Creative Commons licensed via Flickr. Some alterations made to the original.

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The researchers have managed to keep some brains alive for up to 36 hours, and currently do not know if BrainEx can have sustained the brains longer. "It is conceivable we are just preventing the inevitable, and the brain won't be able to recover," said Nenad Sestan, Yale neuroscientist and the lead researcher.

As a control, other brains received either a fake solution or no solution at all. None revived brain activity and deteriorated as normal.

The researchers hope the technology can enhance our ability to study the brain and its cellular functions. One of the main avenues of such studies would be brain disorders and diseases. This could point the way to developing new of treatments for the likes of brain injuries, Alzheimer's, Huntington's, and neurodegenerative conditions.

"This is an extraordinary and very promising breakthrough for neuroscience. It immediately offers a much better model for studying the human brain, which is extraordinarily important, given the vast amount of human suffering from diseases of the mind [and] brain," Nita Farahany, the bioethicists at the Duke University School of Law who wrote the study's commentary, told National Geographic.

An ethical gray matter

Before anyone gets an Island of Dr. Moreau vibe, it's worth noting that the brains did not approach neural activity anywhere near consciousness.

The BrainEx solution contained chemicals that prevented neurons from firing. To be extra cautious, the researchers also monitored the brains for any such activity and were prepared to administer an anesthetic should they have seen signs of consciousness.

Even so, the research signals a massive debate to come regarding medical ethics and our definition of death.

Most countries define death, clinically speaking, as the irreversible loss of brain or circulatory function. This definition was already at odds with some folk- and value-centric understandings, but where do we go if it becomes possible to reverse clinical death with artificial perfusion?

"This is wild," Jonathan Moreno, a bioethicist at the University of Pennsylvania, told the New York Times. "If ever there was an issue that merited big public deliberation on the ethics of science and medicine, this is one."

One possible consequence involves organ donations. Some European countries require emergency responders to use a process that preserves organs when they cannot resuscitate a person. They continue to pump blood throughout the body, but use a "thoracic aortic occlusion balloon" to prevent that blood from reaching the brain.

The system is already controversial because it raises concerns about what caused the patient's death. But what happens when brain death becomes readily reversible? Stuart Younger, a bioethicist at Case Western Reserve University, told Nature that if BrainEx were to become widely available, it could shrink the pool of eligible donors.

"There's a potential conflict here between the interests of potential donors — who might not even be donors — and people who are waiting for organs," he said.

It will be a while before such experiments go anywhere near human subjects. A more immediate ethical question relates to how such experiments harm animal subjects.

Ethical review boards evaluate research protocols and can reject any that causes undue pain, suffering, or distress. Since dead animals feel no pain, suffer no trauma, they are typically approved as subjects. But how do such boards make a judgement regarding the suffering of a "cellularly active" brain? The distress of a partially alive brain?

The dilemma is unprecedented.

Setting new boundaries

Another science fiction story that comes to mind when discussing this story is, of course, Frankenstein. As Farahany told National Geographic: "It is definitely has [sic] a good science-fiction element to it, and it is restoring cellular function where we previously thought impossible. But to have Frankenstein, you need some degree of consciousness, some 'there' there. [The researchers] did not recover any form of consciousness in this study, and it is still unclear if we ever could. But we are one step closer to that possibility."

She's right. The researchers undertook their research for the betterment of humanity, and we may one day reap some unimaginable medical benefits from it. The ethical questions, however, remain as unsettling as the stories they remind us of.

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