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Rare Survival Story Involves Forgotten Neurological Disease, Awakening After Six Decades, and Personal Records of Holocaust Memory.
The epidemic of lethargic encephalitis, the so-called “sleeping sickness,” swept the world in the 1910s and 1920s, leaving a trail of immobilized patients in beds and institutions.
It is estimated that over 1 million people were affected between 1915 and 1926, amid World War I and the Spanish flu, with hundreds of thousands of deaths and a portion of survivors with permanent neurological sequelae.
A century later, the story of a survivor now 92 years old, living in the Bronx, New York, is cited by neurologists as an example of late awakenings after decades of immobility.
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Catatonic for about 60 years, he started speaking again in 1969 thanks to levodopa, resumed communication with family members, began to report memories from his childhood during World War II, and currently produces watercolors in bed, an activity that specialists link to the capacity for neural reorganization in old age.
Lethargic Encephalitis Epidemic and Global Impact
Lethargic encephalitis was formally described in 1917 by the Austrian neurologist Constantin von Economo, who reported cases of high fever, pharyngitis, and extreme drowsiness evolving into a state of nearly absolute immobility.
Patients remained rigid, mute, and motionless, but with signs of preserved awareness, in a limbo between wakefulness and deep sleep.
Reports from the following decades, such as the Matheson Report of 1929, compiled tens of thousands of reported cases in different countries and listed about 80 types of treatments tested at the time, with little proven effectiveness.
One-third of the patients died in the acute phase, another third survived without significant sequelae, and the remainder developed chronic motor disorders, often characterized as post-encephalitic parkinsonism.
In the United States and Europe, many of these patients were sent to long-term care institutions.
At Beth Abraham Hospital in the Bronx, documents from the 1960s record the presence of survivors in a state of nearly total immobility, with diagnoses such as akinetic mutism and oculomotor crises.
Advance of Levodopa Treatment
In 1969, the neurologist Oliver Sacks, then at the start of his career, began treating some of these patients with levodopa (L-DOPA), a newly approved medication for Parkinson’s disease.
Sacks himself described the initial results as rapid transformations, stating that the patients seemed like “extinct volcanoes” returning to activity.
According to reports recorded by the doctor, some catatonic patients began to speak and move minutes after receiving their first doses.
Many attempted to understand technological and social changes that occurred during the time they remained immobilized.
The experience gave rise to the book “Awakenings,” published in 1973, and the movie “Awakenings,” released in 1990. However, the effects varied.
Some patients maintained improvements, while others experienced significant adverse effects, such as involuntary movements and psychiatric alterations.
Later reviews point out that the response pattern to levodopa in this population is heterogeneous, with functional stabilization in some cases and marked fluctuations in others.
Survivor’s Life Amid Disease, War, and Immigration
The patient now 92 years old is part of this group of prolonged awakenings documented in the medical literature.
Born in 1933 in Poland, he contracted lethargic encephalitis at age 5, shortly before the Nazi invasion.
According to family records and hospital documents, the disease rapidly progressed to a lasting catatonic state, first in European institutions and later in the United States.
With the administration of levodopa in 1969, he regained speech and began to report fragmented memories of childhood, including experiences in ghettos and episodes related to the war.
He also described arriving in New York as a teenager, after forced immigration in the post-war period.
These memories, according to researchers following the case, are consistent with the patient’s history and with the pattern of preservation of episodic memory observed in some survivors of lethargic encephalitis.
Art in Bed and Brain Plasticity
Despite residual parkinsonism that keeps him bedridden, the survivor organizes his room in the Bronx as a small studio.
Using a brush adapted to his hand, he produces watercolors depicting scenes of Jewish life in ghettos during the war.
The paintings are occasionally sold at community fairs, according to family members.
Neurology and rehabilitation specialists assert that artistic activities may favor the activation of remaining motor and visual circuits, even in the elderly with chronic neurological sequelae.
Imaging studies published in the last two decades reinforce that neural networks associated with fine motor coordination can be partially reactivated through specific stimuli.
Reviews analyzing hundreds of historical cases of lethargic encephalitis also indicate the possibility of modest improvement in motor and cognitive skills in patients undergoing late adjustments in dopaminergic therapies.
Oral Record of the Holocaust
Every afternoon, the grandchildren visit the apartment and listen to stories about World War II and the Holocaust.
He recounts episodes experienced in childhood, such as daily life in the Łódź ghetto and the separation from his family during deportations.
The family uses a recorder to preserve the accounts.
According to the doctors following the case, the cohesion and chronology of the narratives suggest a relative preservation of episodic memory and frontal functions.
Excerpts from the recordings are part of Jewish education activities in the Bronx, in programs focused on historical memory and Holocaust education.
Sacks noted in his work that many awakened patients prioritized the oral transmission of personal memories, a characteristic also observed in this case.
What Science Discusses Today About the Disease
Although the epidemic disappeared around 1927, the origin of lethargic encephalitis remains under debate.
Studies in recent decades discuss viral hypotheses, with emphasis on enteroviruses, as well as models involving autoimmunity directed at deep structures of the brain.
Recent research describes antibodies related to movement disorders in conditions similar to historical accounts.
Analysis of brain tissue from victims of the time identified findings compatible with viral infections, but experts state that the evidence still does not allow for a definitive conclusion.
The case of the Bronx survivor is followed by academic teams as it provides data on functional preservation and response to therapies even after long periods of immobility.
For the family, the routine involves medication adjustments, rehabilitation visits, and the organization of recordings and paintings produced by the patient.
The apartment houses objects from Poland and records of the survivor’s trajectory, functioning as a domestic space and also as a reference for researchers interested in the late effects of encephalitis.
While science seeks answers about the disease, the patient continues in a state of continuous wakefulness, reconciling memory, narratives, and artistic production.
If you were to face a survivor who lived six decades in silence imposed by the disease, what aspect of human memory would you like to understand better?
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