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Blog Post: April 27, 2021

A Note on Awakenings from Librettist Aryeh Lev Stollman

 

During the years 1916–1927 the sleeping-sickness pandemic, encephalitis lethargica (also known as von Economo’s disease), swept across the globe.

In 1917 Vienna, Constantin von Economo published some of the first case histories. As this was wartime, communication between different medical communities throughout the world was limited. In the decades after the war, thousands more case reports and articles were added to the medical literature as the disease appeared and spread on many continents.

One of the initial symptoms that gave rise to its name was the extreme lethargy and sleepiness many victims suffered, along with abnormal eye movements. Unlike patients in comas, these people were often rousable and even aware of what was going on around them while they slept. During the pandemic, a million or more died, but thousands lived on, many later developing symptoms which were similar to Parkinson’s disease, leaving them immobile like living statues. Large institutions were built to house and care for the survivors. After nearly fifty years, most had died. Those who still survived remained locked away in hospital wards, forgotten and “asleep,” including at Beth Abraham Hospital in the Bronx where a brilliant young doctor, Oliver Sacks, came to work in 1966.

In 1967, Dr. George Cotzias published a landmark paper showing that large doses of L-DOPA — much greater than previously given — could effectively treat Parkinson’s disease. Dr. Sacks began experimenting with it, noting the similarity of Parkinson’s patients to the post-encephalitic patients at Beth Abraham, often referring to them as “Sleeping Beauties.” By doing so, he awakened these forgotten people who had never stopped thinking or feeling, temporarily bringing them back to an active and engaged life as documented in his book Awakenings.

More than a century has passed since the first reported cases and the cause of this disease remains a medical mystery. Some believe that encephalitis lethargica may have appeared several times before, in different places including hundreds of years before in England, Italy, and Germany.

In the last two years the world has experienced a startling new pandemic, whose long-term effects — physical and neurological — are still unknown. We are grateful to members of the medical and extended health care community who have dedicated themselves to the care of the victims of this pandemic, as Dr. Sacks lovingly did with his patients so many years ago.