Encephalitis Lethargica: During and After the Epidemic

337 Pages·2010·2.49 MB·English

by  Joel Vilensky PhD

Encephalitis Lethargica
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Encephalitis
Lethargica
DURING AND AFTER THE EPIDEMIC
Edited by
JOEL A. VILENSKY, PhD
Department of Anatomy and Cell Biology
Indiana University School of Medicine
Fort Wayne, IN
1
2011
1
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Library of Congress Cataloging-in-Publication Data
Encephalitis lethargica: during and after the epidemic/edited by Joel A. Vilensky.
p.; cm.
Includes bibliographical references and index.
ISBN978-0-19-537830-6
1. Epidemic encephalitis—Epidemiology. 2. Epidemic encephalitis—History. 3. Postencephalitic
Parkinson’s disease—Epidemiology. 4. Postencephalitic Parkinson’s disease—History.
I. Vilensky, Joel A., 1951–
[DNLM: 1. Parkinson Disease, Postencephalitic—epidemiology. 2. Parkinson Disease,
Postencephalitic—history. 3. History, 20th Century. WL 359 E5562011]
RA644.E52E532011
614.5’9833—dc22
2010015646
1 3 5 7 9 8 6 4 2
Printed in the United States of America
on acid-free paper
Dedicated to the memory of Sophie Cameron,
who died of complications associated with
encephalitis lethargica on May 30,2006,
at the age of 24 years.
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FOREWORD BY OLIVER SACKS
E
ncephalitis Lethargica: During and After the Epidemic is the story of one of the
greatest medical mysteries of the 20th century, a condition that affected mil-
lions of people all over the world and became a living death for some of them,
until they were “awakened” by the miracle drug L-dopa. Oddly, the epidemic,
which was front-page news for more than a decade, has been all but forgotten, and
there has not been a comprehensive book on the subject in 75 years. Now, Joel
Vilensky and the many eminent contributors to this volume have given us a new
perspective on the “sleepy sickness,” one that is comprehensive and scholarly but
also beautifully organized and vividly written.
While Vilensky was the instigator and driving force behind this enormous
project, he has enlisted many knowledgeable colleagues: Lindsay Anderson, Judith
Cameron, Jennifer Cook, Paul Foley, Sid Gilman, Sherman McCall, Dana Marlowe,
Ravil Mukhamedzyanov, Keith Josephs, Hope Owens, Richard Steele and, not
least, Roger Duvoisin, one of the handful of physicians still living who actually
saw and treated many hundreds of postencephalitic patients.
The authors have clearly read critically all the monographs written on this
epidemic, as well as some 9,000 papers written on encephalitis lethargica in the
years that it spread around the world. One can only guess at the thousands of
hours spent reading in obscure libraries and forgotten archives—yet the product
of all this research is full of life and a fresh perspective which was not possible for
me when I wrote Awakenings40 years ago.
vii
viii Foreword
Such a perspective may only have become possible now, in the 21st century,
for this volume not only revisits the horrible years between 1915 and 1930 when
the epidemic raged and the plight of the survivors for decades afterward, but the
sporadic return of similar (perhaps identical) diseases since that time, including the
recent outbreak in England. While the essential mystery of encephalitis lethargica
remains unsolved, some important clues have been added to the story in recent
years, which Vilensky evaluates here. He also brings together here a number of
(often very poignant) self-reports, never before published or long forgotten. He
considers the question of whether “encephalitis lethargica” is in fact a single dis-
ease, as has always been assumed, or whether it comprises a range of different
disorders with different causes.
The effects of encephalitis lethargica were different in every patient, and
often included personality changes or psychiatric disorders, movement disorders,
sleep disorders, and almost every other imaginable symptom—many of which
occurred only decades later. This often made diagnosis diffi cult or impossible, and
adds further complexity to studying the disease now. Vilensky, therefore, has taken
great pains to present this data in an organized form, with many well thought-out
tables. This analysis, and the many fi ne essays on different aspects of the great epi-
demic, will be invaluable to physicians and researchers, especially if the disease or
cluster of disorders we call encephalitis lethargica ever returns in the overwhelm-
ing, pandemic form it took in the 1920s. But I think this excellent book will fi nd
a much wider readership too, for it is a moving human chronicle with profound
implications for anyone concerned with the themes of sickness and health.
Foreword © 2010 by Oliver Sacks
PREFACE
M
edical historians are typically historical detectives. We fi nd a medical mys-
tery and try to solve it by either combining information from a number of
historical sources or locating the “holy grail” pertaining to the mystery—that is,
the one article or book that contains the solution to the mystery that everyone
else has overlooked.
Encephalitis lethargica (EL) has been my medical mystery to solve. Although
thousands of articles and books were written on the syndrome during the 1920s,
defi nitive knowledge is limited or almost nonexistent. What was it, what caused it,
what became of it, and will it return? all remain unanswered questions.
I have known about EL for a very long time but only became interested in it
after publishing some descriptions of fi lms taken of EL and postencephalitic par-
kinsonism (PEP) patients in 2005 (Vilensky et al.). Subsequently, I began to read
about the disease and spent a wonderful morning with Dr. Oliver Sacks in his
New York offi ce. He, of course, had written about EL and PEP in his 1974 book,
Awakenings, which later became a motion picture. Dr. Sacks encouraged my work
on EL, has continued to provide me with insights into the condition, and wrote
the Foreword for this book.
I subsequently began to write articles on various aspects of EL (e.g., its effects
on children and its manifestations in the Soviet Union: Vilensky et al., 2007;
Vilensky et al., 2008) and was beginning to be recognized as one of the few world
ix