A World of Pandemics: Part II

The Mysterious ‘Sleeping Sickness’ That Plagued New York In The 1920s

Medical science has come a long way in the last hundred years, but that doesn’t mean every medical mystery has been solved. The cause of the mysterious sleeping sickness that struck New York in the 1920s, Encephalitis lethargica, remains unsolved to this day.

Originally called “the sleeping sickness” because the first few cases involved active people spontaneously falling asleep, it had a wide variety of symptoms and presentations. Some neurologists and pathologists believed it was an unusual manifestation of a concurrent flu epidemic, while others believed it was completely unrelated. It was also theorized that the mysterious illness was related to the polio virus, but nothing conclusive has been proven. This is despite the fact that the disease still pops up in isolated cases around the world.

From its first reported cases in 1915 to its abatement in the 1930s, Encephalitis lethargica is estimated to have infected half a million people in Europe alone. Those who survived often had crippling side effects, with some remaining borderline catatonic for the rest of their lives.

The sleeping sickness of the 1920s was never solved, but it has drawn the attention of scientists for years, including Oliver Sacks, whose work on the disease was adapted into the film Awakenings starring Robert De Niro and Robin Williams. 

During The 1920s And ’30s, The ‘Sleeping Sickness’ Perplexed Doctors Around The World

Photo:  Otis Historical Archives/Wikimedia Commons/CC BY 2.

In 1917, as WWI brought mass destruction like the world had never seen, two epidemics began tearing through the shell-shocked world. The first, which would become known as the Spanish Flu of 1918, remains one of the worst pandemics in human history, wiping out an estimated 50 million people and affecting up to half a billion. While this crisis understandably took precedence, it was accompanied by a lesser-known but far more perplexing virus: the sleeping sickness.

The sleeping sickness is believed to have originated in Romania in 1915, but WWI disguised its true impact in Europe. It became more noticeable in New York, and doctors across Europe scrambled to identify the disease. There was plenty of confusion, but no clear answers.

It Was First Described By The Prolific Austrian Neurologist Constantin von Economo

Photo: Unknown/Wikimedia Commons/Public Domai

Due to the varied presentations of the disease, the overwhelming demands of WWI, and the appearance of other epidemics around the same time, many doctors treated individual cases of Encephalitis lethargica without realizing they were dealing with a wholly new illness. It took the work of Austrian neurologist Constantin von Economo to fully isolate and categorize the disease. 

Economo was a wealthy aristocrat and a Renaissance man. He was the first Austrian man to hold the equivalent of a pilot’s license, and he was trained as an engineer before he moved on to psychiatry. 

Economo gave the disease its name, based on what he determined to be its principal manifestation: lethargy and catatonia. In a series of monographs that are studied to this day, he argued his case on the nature of the disease from its categorization as encephalitis (an illness resulting from inflammation of the brain) to its varied pathologies.

Some Of The Afflicted Reported Feeling No Discomfort In Their Sleep

Photo: Harris & Ewing/Wikimedia Commons/Public Domain

The sleeping sickness prompted, among other things, an examination of the nature of sleep and the difference between sleep and catatonia. However, there was a wide array of experiences reported, some of which were quite pleasant. Take this account, written by Eleanore Carey, who suffered from the illness in 1923:

After two months of illness I was in little pain, in fact… It was so heavenly just to be allowed to sleep, but these people around me seemed determined to prevent my being comfortable! When the idea finally crept through my sleeping brain that I must waken, it seemed to be a physical impossibility. I wanted to be obliging, but I just could not. 

Other victims reported dreams and vivid hallucinations. Often, it was possible to wake the patient, but only for a few moments before they succumbed to sleep again.

Some Victims Perished Within Days, While Others Slowly Recovered

During the course of the epidemic, most doctors kept and compared rigorous notes. This allows us to examine a wide variety of case histories, although it is difficult to derive clarity from them because of the wide range of symptoms. However, one thing that does emerge is the unpredictable nature of the sleeping sickness.

One case study details a woman who suffered the sleeping sickness in 1917. She came to the clinic exhausted, and then slid further into somnolence. These symptoms were accompanied by a fever and the paralysis of her right arm. This woman seemed lucky, as her condition slowly improved, and two months later, she was discharged from the hospital with no signs of fever or paralysis. Unfortunately, she passed a month afterward due to pneumonia.

However, not everyone was lucky enough to stage a partial recovery. One young boy was brought to a clinic on April 20 already in a comatose state. He passed on April 28. Both of these cases were common, and there was no known indicator of who might survive and who might not.

Many Who ‘Recovered’ Developed Disabilities Later In Life

During its acute phase, the disease caused somnolence, lethargy, paralysis, fever, and sometimes ended the patient altogether. Some patients, however, made a full recovery, often without any treatment. While this must have come as a relief, the disease was not quite finished with them.

After recovery, many of these patients developed some form of Parkinson’s disease, a progressive nervous disorder that often causes the loss of various forms of muscular control. Parkinson’s can include wide variety of symptoms, and one of the most extreme forms was often seen in survivors of the sleeping sickness: akinesia.

Essentially, this means total body paralysis. Some of these patients remained in a paralytic coma for many years. Robert De Niro’s character in Awakenings, Leonard Lowe, is exactly this sort of patient.

Some Survivors Remained In A Sleep-Like State For Years

At various points during a case of Encephalitis lethargica, it is possible for the patient to fall into a deep, akinetic coma. Chiefly, this was experienced by people who thought they had completely survived the disease, only to develop a worsening case of Parkinson’s years later that culminated in the coma.

Because the cause of the disease was unknown, these comas were thought to be irreversible, and those who suffered them were largely forgotten, as long-term coma patients often are. However, when Oliver Sacks began treating them with L-DOPA, some of them were able to interact with the world for the first time in 40 or more years.

Awakenings’ Showed What Happened To Those Who Temporarily Recovered

Photo: Awakenings/Columbia Pictures

Overshadowed as it was by the Spanish Flu and WWI, the sleeping sickness didn’t really come to the public eye until the renowned British neurologist Oliver Sacks wrote his groundbreaking Awakenings, a book that movingly detailed his interactions with patients who suffered from the disease. Sacks was responsible for the proliferation of L-Dopa, the medication that awakened many of these patients. In the book, he describes the challenges of bringing people from the 1920s into the 1960s.

The book was a massive success, and is still considered one of the best pieces of medical nonfiction ever written. It should come as little surprise, then, that it was adapted into a major Hollywood motion picture, starring Robin Williams as a fictionalized version of Sacks, and Robert De Niro as the man who wakes up in a new decade. After it was released, Roger Ebert wrote:

What both the movie and the book convey is the immense courage of the patients and the profound experience of their doctors, as in a small way they reexperienced what it means to be born, to open your eyes and discover to your astonishment that “you” are alive.

Nobody Knows What Caused It

Despite Oliver Sacks’s groundbreaking work with the treatment L-DOPA, there remains no complete cure for Encephalitis lethargica, as the medication often only provides temporary relief. It is perhaps unsurprising that there is no cure, because scientists don’t really understand what causes the sleeping sickness in the first place.

During the outbreak, there were many different theories as to the cause. When the disease first appeared in England, doctors believed that it was a form of botulism. However, botulism is the result of detectable bacteria, and the bacteria simply was not present. Many other theories were proposed regarding the mystifying disease.

At the end of the day, the truth is simply unknown. Papers are still written advancing various theories, but none have been proven or widely accepted.

Cases Continue To Pop Up Today

Because of the mysteries surrounding the illness, it is difficult to truly define when it began and ended. It is also difficult to identify whether there have been any new cases, although conventional wisdom says that at least a few more cases have popped up.

In 2015, a paper was published about a young boy who had contracted HIV. However, when he came to the hospital, he quickly developed symptoms similar to Encephalitis lethargica: lethargy, mutism, and muscular weakness of the optical nerves. There are numerous examples of similar cases, but cautious doctors are reluctant to label them as sleeping sickness.

Some Believe Adolf Hitler’s Parkinson’s Disease Was An Aftereffect Of The Sleeping Sickness

Photo: Heinrich Hoffman/Wikimedia Commons/CC BY-SA 3.0 DE

Adolf Hitler may be one of the most over-diagnosed individuals in human history. Due to his morphine addiction, his illness-plagued youth, and his high profile, modern doctors love to retroactively diagnose him with everything from borderline personality disorder to irritable bowel syndrome. While many of these assumptions are sensationalist and based on wild assumptions, there has emerged something of a consensus that the German dictator could well have suffered from Parkinson’s disease.

If that’s true, it is likely that he also suffered from the sleeping sickness in his youth. Due to the relatively late onset of his Parkinson’s disease and his age at the time of the epidemic, the sleeping sickness makes a great deal of sense as the source of his Parkinson’s. A medical paper also makes the case based on his symptoms:

Hitler had oculogyric crises [deviation of the eyes], phenomena only associated with post-encephalitic parkinsonism. In addition, he had dystonic facial spasms, palilalia and a sleep disorder, phenomena more likely to be associated with post-encephalitic than idiopathic parkinsonism.

President Wilson May Have Contracted It In 1919

Photo: Harris & Ewing/Wikimedia Commons/Public D

It is always dicey to retroactively diagnose historical figures, due to both the lack of contemporaneous material and our own modern biases. This is made doubly difficult in the case of someone like Woodrow Wilson, who had a battalion of health issues independent of whatever we may diagnose him with today.

However, that hasn’t stopped a number of modern doctors and pathologists from using historical sources and medical records to diagnose Wilson as a sufferer of Encephalitis lethargica. Edwin Weinstein, one of Wilson’s most prominent biographers, believes that a complicated series of medical disasters accounted for Wilson’s famously altered behavior during the peace negotiations at the end of WWI.

Weinstein believes that after a number of strokes throughout his life, Wilson contracted the flu, which left him vulnerable to the sleeping sickness. Regardless, Wilson didn’t have long to live after the 1919 Peace Conference; he passed five years later in 1924.

Reference

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