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tv   Book TV  CSPAN  March 14, 2010 6:30pm-7:00pm EDT

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>> thank you for having me here tonight. i'm especially happy to be here at davis cade in memphis. it is one of my favorite book stores and i am usually hear teasing one of my kids on the also it's nice to be here on more professional circumstances tonight. i thought i would start by answering the two questions that i always get asked when i discussed my books. no, i'm not a hypochondriac and secondly i like writing about these stories because to me they are much more about people and they are about a disease. i am one of those people that if there is a natural disaster happening in the world i include to c-span for days. i know i'm not the only one. i think what draws us and is not the tragedy itself of these disasters but more just the hope and miracle of survival. that is what inspired by first book, the american plead about yellow fever and about one-third of it took place here in memphis because i really wanted to show
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what a yellow fever epidemic was like up close. that one epidemic in memphis in one season killed more people than we lost at pearl harbor and more than we lost on september 11th. our most recent devastation, both an earthquake in chile recently and then also the one in haiti -- haiti has a death toll of about 300,000 a and yet the 1918 flu took between 50 to 100 million lives. what i've always been interested in is showing how these epidemics at one time in history were very much like the natural disasters. compared to the 1918 flu the disease i write about in this book seems a lot milder even the would be affected kill almost 1 million people about 5 million people worldwide came down with it. i'm going to be short reading tonight from the prologue because it explains how i first learned about this epidemic and why i chose to write a book about it. the prologue is entitled inside.
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my grandmother was 69 she fell asleep. but she remembered most for those weeks is the white noise and emptiness, not like snow or fresh paint but caused by the complete lack of anything else, the same way the dense fog can consume anything in its path. she also felt quote like the summer nights when she slept with a bowl of ice in front of the fan. everything seemed cold and fecund and white. she could see herself present in the room but she wasn't herself, she was polished, us moved like a statue. she tried to lift her arm but it wouldn't move. she concentrated and tried it and felt as though her arms, hands, legs and feet were no longer connected, no longer accepting commands. at that point she became frightened and overwhelming claustrophobic year's easter. she was a statute. as the worker mind could only take so much of the stress she began to pull away teeter on the edge between the treen and write lummis. frattali, told her that she was on the training. it was only a nightmare and she
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felt relief fresh through like a breath. she began to feel the bed sheets on her skin and since the light from the window. she struggled to come out of the treen and open her eyes to what not happen. the feeling is something terrible is happening, a taste of nightmare remained. the year was 1929 and the time that the virginia and her family had no way of knowing she was joining millions of others suffering from a strange global pandemic, a disease that would change medicine itself but vanished from medical history. a disease that would kill close to a million people and leave thousands more languishing in mental institutions the rest of their lives, an epidemic that nearly a century later remains a mystery but could strike again. virginias mother spoke to her in the column tone of voice used for bloody chance or turned ingalls into her room was filled with voices of doctors what was most frightening was on the certainty in their voices. they didn't know what caused the city of the teenage girl and worse how to stop this and less sleep. her temperature was taken
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several times and noted on the chart. she felt the doctor's hand against her wrist and on the stem of artery along her neck and then over the course of the day and weeks she heard the doctors pronounced her dead. three different kinds. each time she listened to her parents week and heard them make plans for the burial. she couldn't even tell them they were wrong. this was by far one of the strangest diseases the world has ever seen. it began in the trenches of war one of the western front in france when a parisian dr. started seeing patients coming into the field hostile as well as in paris who would not wake up. they were not in it, they simply could not pick them up. about 60 or so patients survived that way. at the same time on the opposite side of the war in vienna in a psychiatric clinic and neurologist was seeing a patient arriving with similar symptoms. there were brought in. they couldn't keep their head up, they would fall asleep in the chairs, parents brought children who had fallen faced
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first it into their dinner plates and if that wasn't bad enough, a whole plethora of new unusual symptoms started our riding. there was an epidemic of hiccups. there were unusual tics and disorders coming, obsessive compulsive disorder, turrets and durham, there was a high incidence of schizophrenia, hysteria. there was even a case of someone tracked in picking the doctors not to torture them, another bodman said she had been impregnated by got. all of this was happening at the same time in this one clinic and a doctor and konstantin recognized the one saddam on all of these patients and that was that their sleep cycle was off. they couldn't stay awake. this epidemic continued to move throughout europe. she did publish an article on the subject who named the disease encephalitis plan for julca which means literally the swelling in the brain that makes you sleep. the same time the parisian dr. was publishing a paper but they were not able to discuss it or even compare cases.
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they were on opposite sides of the world which stunted the information spreading about this disease. it did not stop the disease, however, i did it move on. it moved on to london with troops there and when it first hit london they thought it was some kind of new chemical warfare being used by the germans. then it hit the one city in the united states for which all american troops were departing and arriving, new york. by 1919 this disease had cost the globe. what the doctors were finding when the autopsied patients because of this point it was close to 40 or 50% of the dalia without ever waking they found damage to the midsection of the brain, the part of the brain that controls sleep. they started looking through medical histories to find other epidemics that might have happened. all of them were connected to a great flu pandemic and had been incurring for hundreds of years. sleeping beauty was written shortly after a series of sleeping sickness epidemics in england likewise rip van winkle was written shortly after a sleeping sickness in england and
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washington was living in london at that time. but the epidemic that began in 1916 is by far the longest epidemic it left the most tragic survival and is considered the worst in history. the disease went one of two ways when a patient called it because it was damaging specifically basil dingley within the brain. i'm going to try to make is as simple as i can. basically it was acting as a switchboard within the brain and so the message is going through becoming static. in the cases of adults and children they were having 30 different effects. in the adults the messages that were getting static and stunted or the messages about movement and so the most prevalent disorder and what became the hallmark of this disease was parkinson's and parkinson's disease had been around for over 100 years and like today it was a disease associated with that chance in decades in life people usually call it in their seventies, eighties, nineties.
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it became so prevalent at this time with this epidemic the average age was 32-years-old. it continued to about 36-years-old during the late 1920's and then took decades to once again be considered disorder that was associated with advancing years. you may have heard of the word awakening were seen the movie will then williams actually plays oliver sacks in the movie and he encountered a group of these extreme parkinson's patients in the late 1960's. he was a young neurologist who never learned about this disease and he found them in a chronic hospital. they were appearing to be catatonic for the most part. they couldn't speak or move. they were wheelchair-bound and what he found out was looking through all of their old medical history they had all been survivors of this sleeping sickness 40 years before so he decided that this was some kind of extreme form of parkinson's that have literally frozen their
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muscles. they could no longer move and the breakthrough drug was the same one that is commonly used today. he tested it on the patient's and it's a very tragic and beautiful story. he was able to awaken the patient spigot they can a week the first time in 40 years. the salles family members for the first time. they spoke, walked, got to know the doctors and sadly they were not able to maintain the levels to keep them that way. each one of them ended up going back into this kind of frozen in present state. if that is not the worst, then certainly the case is with the children could be even cooler. the brain damage and the children was also damaging the days of dingley of the messages that it was standing were those coming to and from a frontal lobe. frontal lobe in particular does not finish growing until early 20s and so for the children their brains were still pliable. when they started swelling and the damage was very different. the frontal lobe controls
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personnel become the motions, self control, inhibition and stopped short of the development in a lot of those areas. for the children parents describe them as sweet, normal children when they fell asleep and when they awoke the described them as monsters. they said they had developed all kind of severe personality disorders. a number of them went violently in same. some attacked siblings and some tried to kill their parents, some attacked people on the streets and so as a result most of them in the up being institutionalized. as many as 70% of children who have this disease had severe personality disorders. obviously when trying to decide how to write this book it was up the challenge to figure out how to cover the spectrum of so many bizarre and tragic symptoms so many patients had so what i ended up doing is breaking into seven case studies, seven different patients you do get to know personally and also the
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doctors that out of all of these stories a group of neurologists that are the ones trying to track and understand the disease and eventually develop a vaccine. the stories also about the positions and today we think of medical investigators when you picture than you think of the cdc, safety levels and the medical investigators i wrote about in both this book and by previous book were to doing the same kind of research on disease that were just as lethal and dangerous. they did them in regular labs and clothing, normal clothing and then the even tested the disease. the tested vaccines on themselves and injected themselves with the disease is so it was her like medicine for these doctors. the doctors in this story are like fred, he's a neurologist, noted a neurologist in new york and to ever treat helen keller. he was also treating the owner of "the new york times" for
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bipolar disorder. there's also smith, a psychologist and friend of freud but they continued to correspond throughout this time and he was treating some of the most famous patience and you're concluding mabel dodge and members of the roundtable. he was even treating the mer stress what a life to the cowrite in the limo once a week and it was also the story of josephine a bacteriologist and neurologist, vaccine researcher and was a public health official at a time less than 5% of medical students were women. and this is a fascinating time and brain study when world war i started they were wearing leather helmets amazingly enough. by the end of the war the switch to steal but nonetheless there was a lot of brain damage done getting physical brain damage getting neurologist's the chance to understand mapping the brain better and damage to the psyche helping pave the way for psychiatry. and was the beginning of near
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zero surgery. this was a generation of neurosurgeons actually had no one to train them, they were trained by general surgeons because there was no one who could teach them and there was an interesting if anecdote i found from one of the surgeons in new york they would travel from hospital to hospital carrying his medical bag with instruments and he was at bellevue performing surgery on a patient on a boreman who was awake in the middle of the surgery and halfway through she stopped, she was from the south and said to you mind if i light a cigarette and the doctors looked and shrugged and said no, go right ahead. that's fine. fortunately sanitation has come a long way since then in the hospital. one other thing i found fascinating about this time was that the brain study combined both the brain and the mind. the doctors were referred to as zero psychologists. i would change. now we know the brain is considered the realm of neurology and the mind is within
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the domain of psychiatry and then this was also a chance for american medicine. coming before world war i american medicine hadn't been highly respected or regarded. most american doctors went over to berlin, vienna, paris or london to study medicine further but world war i had factor all of europe and crippled all of their medical research and so american medicine and these doctors in new york in particular saw this as a great opportunity to make new york the neurological center of the world. the had an enormous psychiatric institute the institute was put at the same time it was incredibly impressive and state-of-the-art part of what made that possible was not the case studies i fall in this book it was jpmorgan's wife who contracted sleeping sickness and diet of it and jack morgan was so distraught that he donated an entire floor of the middle to the institute for the study of the vaccine. there was so much hope involved
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in this disease there was hope for the doctors and their vaccine research if they could to the bobbit vaccine and its medical and mortality. there was a little this as a kid with new york that helped position myself custis near al-awja call center and so much hope among the patients these patients had a dark future ahead of them. this disease became the sort of to headed beast because when it started it was the acute cases like my grandmother people who became sick with a fever and infection they sell asleep the encephalitis did damage. they might awaken healthy enough for believed they had really survived this and then over the years or even decades later they started to develop the physical disabilities, the parkinson's said in and they could see it happening and slowly feel themselves starting to freeze up so there was a lot of hope among the patients during the 1930's if they could develop this vaccine that they may return to a normal life unfortunately this
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hope is not materialized. it's one of medicine's failures. they were never able to develop the vaccine. they were never even able to establish what was causing this epidemic so i was really interested in wanting to know how did this get lost to history over nine dozen articles were written at a time of the epidemic it affected 5 million people worldwide and clearly anyone who had the disease one knew someone who had the disease the effect were haunting and left all these people in institutions for decades. one reason i think it may have gotten forgotten is it a failure and medicine does not demoralize its failures. but i also think it was the time period in which it happened, the 1920's, the greatest technological the chance that that america, the world had ever seen and in one generation we had gone from horses and carriages to cars, skyscrapers, airplanes, people in their homes turned on the switch for light and a faucet for water. the radio was in full use back then, telephones were in every
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household, appliances and within a dustin we had discovered viruses, bacteria, vaccines were developing and as we know 1929 hit and there was a stock market crash and then an unprecedented economic depression that followed. so i think what may have happened to this epidemic is it simply got lost in the brightness of one decade and darkness of the next. the last case study in this book as a little boy named philip. he was actually in english patient. he went into the hospital after a case of infection. he had a fever of some kind. his parents took him to the hospital in the 1920's. he was still there 70 years later. the bbc's philip was the last survivor from this epidemic. he died in 2004 and his family donated his brain to science in hopes they could figure out something with this disease and prevent it in the future. it is a medical mystery that has never been solved. doctors continue to work on it today because there are still
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cases today. it occurs sporadically throughout the world and probably more than people even realize because it's not taught routinely in medical school doctors are not taught how to diagnose or recognize it. it has such a disparate sometimes it's very hard for people to really pinpoint this particular diagnosis. so that makes it all the more frightening. they have two theories as to what they have caused that we have been connected to the 1918 flu which would make a lot since. histories largest slickness epidemic following history's largest flu epidemic and throughout history all of these hundreds of years before all of the flu epidemics seem to be followed by cases with neurological complications and personality disorders. there is also a group of doctors even since i have published the book that came out the had actually worked here in memphis at st. jude and bigger steadying the connection between this disease and the flu. manly flew researchers and their interest wasn't so much in the
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2,009 h1n1 swine flu. it was the one just before that, h5n1, that's a lot like 1819, the dairy avian flu. so many people that focused on the speed to a few years ago looked at just a very high death rate. disk of doctors is focusing on what happened to the patient survived and finding a lot of these patients who did survive the flu or developing personality disorders, neurological complications and parkinson's so they believe there could be a strong connection between very light flu strain and encephalitis lethargic the. they also believe that this is an initial response. if that's the case, then a flu virus could affect someone and then it would be individual, a certain group of people in this society would start to overreact. their immune system would overreact compared to other people and it would make
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disappear as an epidemic because this wasn't a contagious disease it was just shoveling infectious diseases. another group of doctors is working on a similar theory. i spoke with this doctor in australia now but he originally started his work in england and he believes this is associated with the strep bacteria. there has been talk about a similar condition like that today and he thinks the brain cells as he explained it to the brain cells are similar in their appearance to bacteria especially the mister -- this strep a. he believes it is mistaken identity the body starts attacking these brain cells instead really to complicate it even further we also now know most people who died during the 1918 phlebitis bacterial pneumonia common of the flu virus and most common bacterial ammonia is also strep a.
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both sides have valid compelling research they just don't have answers and the concern is certainly if there's another flu pandemic or terri hail let strain we could see this happen once again. to my time going to end of the last point that throughout history we continue to see the sleeping sickness mysterious epidemics are rife first in the 1600's and 1700's and it surprised the contemporaries in 1916. is priced doctors through the 1920's and then oliver sacks in 1960 and it just begs the question that if or when we see this disease again are we going to be as unprepared and bewildered as those who came before us. i would be happy to answer questions for anyone who has them. thank you. >> what is the status on the vaccine earlier that was created [inaudible]? >> that was the treatment and so
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the had the elbow but treatments today. that is something if there's a current case of encephalitis lethargic the day try ev aldopa. the vaccines that were never successful with. bickel tried a couple of vaccine did were able to beat could never able to get them to work. there are also studies that stop short. they lost funding during the depression. yes? >> have you uncovered any relationship between a client and satellite is because forces were used briefly during the first world war and some in the second world war in transportation. they were everywhere. equine encephalitis is still around. >> right. i know the researchers were working on that as well, that encephalitis and that that came shortly after this in the
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1930's. i don't know if there was a connection between that one and this one but encephalitis lethargic they were able to pass to medical animals. they took human blood and past three and amol and were able to produce different types of encephalitis so there could very well become action. >> [inaudible] >> its viral? i didn't realize that. so it's more like the insect, like west nile. >> it's carried by mosquitoes. >> someone was asking me on a radio interview i'm not aware of other cases of encephalitis like this one where they think it is purely immune response to infectious disease. the most common like you're talking about, they are vital and spread by the various insects, was quitos, was filed. that is the case of the japanese encephalitis and st. louis encephalitis i mentioned. i shall also clarify this is not in any way connected to the sleeping sickness and africa. that is another question i
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forget. that was spread by again this encephalitis doesn't seem to be spread by anything other than another disease. other questions? yes. >> what research is going on today in this regard? >> for this not a lot. they seem to be doing more of the research and england. i think they were very hard hit by this epidemic as was the u.s.. most major cities in the u.s. that sleeping sickness but they spent all but a lot more there. that is why most of the researchers the studies i was reading are coming out of england. there are some here. a lot of the researchers overlap with the 1918 flu studies. some of the researchers that were looking at the archived brain tissue from 1918 have been looking for encephalitis, evidence of encephalitis in those patients so there has been some crossover in america and in the studies in england. yes? >> where did you go for most of
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your research? what were the of the centers of the primary source material? >> i was surprised when i started researching to find there wasn't a book anywhere on the subject. oliver sacks awakening is the closest i found so most of my research was done directly in new york since i planned to set most of the book set in new york and i mainly dealt with the original medical records, so it was both fascinating and sad. the new york academy of medicine and columbia health science library both contained boxes of medical records and the time doctors kept a lot more extensive and personal information about their patience which was enabled me to develop these characters because there was so much information and most of these medical cases. but then again a lot of the files were destroyed. i would like to see more but when a decentralized the institutions in the 70's they destroyed a lot of the medical files. other questions?
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anyone else? okay. thank you. [applause] >> moly caldwell crosby is the author of the american played the untold story of yellow fever. her writing has appeared in several publications including usa today, "newsweek" and health magazine. davis kidd booksellers in memphis tennessee posted this half hour even. for more information, visit daviskidd.com. here's a look at some upcoming book fairs and festivals over the next few months.
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[inaudible conversations] we are concluding today's live coverage of the tuscon festival of books. former "baltimore sun" white house correspondent lynne olson discusses her book, "citizens of london." [inaudible conversations]

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