Books & Movies: Preserving the Forgotten

Cases started appearing in WWI, around the time of the Spanish flu epidemic. Afflicted soldiers slept constantly, displayed tics, and eventually froze in paralysis, barely alive. No one could figure it out — was it the mustard gas?

During the same time in Vienna, the neurologist Von Economo discovered that most of his civilian patients with the mysterious disease had a swollen hypothalamus, which helps control sleep. And so the disease was called encephalitus lethargica (“EL”, brain-swelling-induced-sleepiness), or just the “sleepy sickness.”

Ever heard of the sleepy sickness?

Me neither.

Then I watched the movie Awakenings (1990) [1] in my neuroscience class. Based on the true experiences recounted by Dr. Oliver Sacks in his book Awakenings (1973) [2], the movie stars Robin Williams as Dr. Sayer and Robert DeNiro as the frozen patient Leonard.

Robert DeNiro as the sleepy sick patient Leonard (left) and Robin Williams as Dr. Sayer (right)

The movie replays events of the 1960s, in which Dr. Sacks/Sayer discovered a group of EL patients in a hospital in the Bronx, New York. He noticed their peculiar paralysis-if he threw a ball to them, they’d catch the ball. If their glasses slid off their nose, they’d catch the glasses before they fell to the ground. Other than these reactionary movements, these afflicted individuals would never initiate voluntary movements like dressing, feeding, or going to the bathroom themselves. They would sit in one place, unmoving.

Dr. Sayer treated Leonard (and other patients like him) with high doses of the revolutionary drug Levodopa (L-Dopa), a precursor for the neurotransmitter dopamine. The L-Dopa drug was, at this point, only administered to Parkinson’s Disease patients (parkies). Parkies normally experience rigidity, slowness, and freezing of gait. Characteristic of the disease, Parkies lack the neurotransmitter dopamine, and L-Dopa helps reinstate dopamine in the brain.

So what happened to the sleepy sick patients who took L-Dopa?

Leonard (and other patients like him), who had been paralyzed for decades, unfroze! These patients recovered their movement, were awake, and could live again.

And then developed tolerance to L-Dopa, and sadly…froze again. After taking dopamine too long, patients often became psychotic, developing tics too.

This movie was a real tearjerker. Imagine how Dr. Sacks must have felt in real life.

But the coolest part is that Dr. Sacks wrote the book (1973) which motivated further research on the almost forgotten sleepy sickness. Although new cases are rare, a recent study [3] published in 2014 considered the applications of new sequencing technology to study new cases of EL, so we may be prepared to fight a future epidemic. And of course, his book inspired the movie (1990) which brought two of the greatest actors of all time together — Robin Williams and Robert DeNiro!

So there’s something to be said for books and movies — they preserve that which may soon be forgotten.


[1] Sacks, O. (1973). Awakenings

[2] Awakenings. Marshall, P. (Director). (1990).[Motion Picture]

[3] Tappe, D., & Alquezar-Planas, D. Medical and molecular perspectives into a forgotten epidemic: Encephalitis lethargica, viruses, and high-throughput sequencing. Journal of Clinical Virology, 61(2), 189–195. doi:10.1016/j.jcv.2014.07.013