Poor communication between doctors and patients is widely seen as a problem in American healthcare. Now more and more healthcare providers are giving patients new ways of accessing doctors to ask questions or express concerns. In the age of email, texting, video chatting and social media, a look at the promise and limitations of digital communication to improve patient experiences and outcomes.
A sleeping sickness epidemic in the wake of the 1918 influenza pandemic has been nearly forgotten. Scientists still don’t know what caused it and why it suddenly disappeared, but they fear it could happen again.
- Molly Caldwell Crosby author of bestseller, "The American Plague."
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. A World War I soldier shows up at a clinic unable to keep his eyes open. A girl in New York has violent seizures, falls asleep and never wakes up. And a young woman is driven to grotesque self-mutilation, tearing out her eyes and teeth. All of them victims of encephalitis lethargica, the mysterious sleeping sickness epidemic that spread around the world at the same time as the 1918 flu. Author and journalist Molly Caldwell Crosby describes the victims and their doctors in a new book titled "Asleep." She joins me in the studio. You can join us as well with your phone calls, e-mails, your tweets, messages on Facebook, 800-433-8850, e-mail firstname.lastname@example.org.
MS. DIANE REHMGood morning to you, Molly.
MS. MOLLY CALDWELL CROSBYGood morning.
REHMGood to see you.
REHMI gather that this story had a very personal meaning for you?
CROSBYIt did. It's know as the forgotten epidemic and I really only knew about it because my grandmother had been a survivor. She had a case of it in 1929 -- I mean, it was about an epidemic that lasted about a decade and she was 16 years old at the time and fell asleep after having some type of infection they never identified. And she slept for 180 days before awaking (laugh). So she missed the rest of her school year, she was too weak, it took another year to fully recover from that, so she never was able to finish school. She did go on to live a relatively normal life, so.
REHMTell me what happened during that 180 day period. Do you know?
CROSBYI don't know a lot. I would have loved to have had the opportunity to ask her more questions. She has since passed away and I did not, at the time, realize that I would be writing about this subject, so I truly wish I had been able to ask her more about it or other family members.
REHMWere there other people that you did research who had that same kind of experience and then simply woke up and went on to live a normal life?
CROSBYYes. Everybody seemed to have a little bit of a different type of case, as varied as people are because it was affecting the brain and so it could affect individuals and vary individual was. And about one-third of all sleeping sickness cases did recover fully. About a third died and about a third recovered with major disabilities.
REHMAnd you wonder during that period of sleeping sickness whether people awoke to eat, whether they digested food, whether they function normally while they were awake and then simply couldn't stay awake.
CROSBYRight. In fact, a lot -- one of the case studies in this is J.P. Morgan's wife who later died of sleeping sickness and he had food pureed and given to her through a feeding tube every day for three months to keep her nourishment up.
REHMWhen were the first cases actually reported?
CROSBYThey were actually reported during World War I, around the winter of 1916 and '16 and it -- the problem was they were reported on opposite sides the war, one was a Peresian (sp?) doctor and one was a Viennese doctor and on opposite sides, they were not able to compare or discuss this. They didn't realize it was an epidemic at first, but they both started seeing patients at the same time in their clinics and hospitals who just simply could not stay awake. The Viennese doctor beat the Peresian doctor by about five days publishing an article on this and he named it encephalitis lethargica, which literally means, the encephalitis that makes you sleepy.
REHMAnd were their patients soldiers and that's why they couldn't talk about it?
CROSBYAnd then, when they started to see civilians come into the clinics, that's when it became more alarming. They realized it was more widespread and moving, it was traveling.
REHMSleeping sickness. Did it begin with fevers? How did it begin?
CROSBYMost of the patients did complain of fevers and sore throats, which has kind of led to some interesting research today. They have never determined what caused this. A lot of the patients had the 1918 flu, but so did a large portion of the world, so it's hard to know if it was truly a cause and effect from the flu. As the modern research has looked at possible strep throat as a form that may have led to it and they looked through old case studies and realized a lot of patients first described symptoms of fever and sore throat.
REHMDo they know what portion of those who had this 1918 flu actually came down with sleeping sickness?
CROSBYThey don't. It's very hard to pinpoint because at that time, they had not even isolated the flu virus, so they're not able to test blood for it and this disease was so difficult for doctors to diagnose. For one thing, sometimes people awoke from what they refer to as the acute part of the illness, when they had been asleep, and their symptoms were immediate. They could tell that something had happened, there had been damage. Others didn't show symptoms for 10 years. And in a way, it was very cruel. They believed that they had completely recovered from sleeping sickness only 10 years on down the road to have disabilities.
REHMSo you're saying that not as much research has been done on it as you would like to have seen?
CROSBYOr as doctors today, I think, would like to see...
CROSBY...because there is concern, if there's a connection somehow to a flu strain, that it -- we could see it again in pandemic flu, so they would like to know what caused it (laugh).
REHMYou know, it's interesting, you talked about the blinking of the eyes. Was that one of the first symptoms?
CROSBYThey -- eye disorders were some of the most noticeable symptoms and unable to control the eyes. One of them was blinking and also their eyes rolling back, something that they called oculogyric crisis. And it was a little bit like a seizure. Their neck dropped back, their eyes rolled back and they sort of froze still like that and it was apparently patient -- very painful to the patients. They described it as that and it could last for hours, so it was a very bazaar disease.
REHMBut, of course, these days, with the blinking of the eyes, the inability to keep them open is referred to as blepharospasm and treated sometimes with BOTOX.
REHMAnd the same disorder that I have in the vocal cords, with the clamping inappropriately, that is also treated with BOTOX.
CROSBYOh, that is interesting.
REHMSo a friend of mine who suffered from blepharospasm literally could not keep her eyes open, but that was not something that eventually became a sleeping sickness, it was just the eyes.
CROSBYThe voluntary action of blinking.
REHMYeah, the voluntary action of blinking, so your first case history is an unknown soldier in 1916, so tell us what the doctors made of his symptoms.
CROSBYHe came in off of the -- out of the trench warfare on the Western front and he was eventually traveled to Paris and ended up in a field hospital and then a Peresian hospital, which is where the Peresian doctor found him and he just could not stay awake.
REHMHow old was he?
CROSBYI don't know. They -- a lot of the times -- sometimes their medical texts were very personal, especially some of the later case studies and gave a lot of personal information about the patients. In this case, they were literally numbered. It was patient one, two, three and he saw about 60 patients in all in very short span who could not keep awake and started preparing a paper on it.
REHMWere they all coming from the same area?
CROSBYThey did. They believed it started with -- at Verdun, very violent awful and I think it lasted about 10-month long battle. The first patients were coming off of that battlefield.
REHMAnd then did it spread to the countryside to people who were not involved in warfare?
CROSBYYes and it's hard to say which started first because communication was so stunted during the war and it was an unusual disease. It took a long time for doctors to recognize a set of symptoms in which to diagnose this.
REHMMolly Caldwell Crosby, her book is titled "Asleep: The Forgotten Epidemic that Remains One of Medicine's Great Greatest Mysteries." Do join us, 800-433-8850, send us your e-mail to email@example.com. There are a lot of other symptoms that set this disease apart. Talk about those.
CROSBYYes. This was a type of an encephalitis, it also became known as epidemic encephalitis and it was affecting the brain in different ways, depending on whether or not it was an adult or a child. So most adults developed became the hallmark, the chronic symptom of this disease, which was Parkinsonism. It became so prevalent during this sleeping sickness epidemic that the average age of onset was 32 years old for Parkinson's. And prior to that and after that, it was considered more disease of advancing years, so that tells you how prevalent it was at the time.
CROSBYAnd then for children, they had -- it affected a different it affected the same part of the brain, but in a different way. It was stunting messages to different parts of the brain. In the case of adults, it was the movement disorders. In children, because their brains have not quit -- you now, they've not finished growing and in particular their frontal lobe has not finished growing until their early 20s, it's still pliable in a way and they believe that maybe the swelling sort of stunted some of their growth in the frontal lobe and that happens to be the part of the brain that controls emotions and personality, inhibitions, self-control, so these children became -- they were described as monsters.
CROSBYThey had been completely normal children and then become violently insane in a lot of cases. Seventy percent of children who had this disease showed major psychological changes.
REHMAnd so what they started out with was something like an ordinary flu...
REHM...which progressed to this kind of violent behavior.
REHMAnd I presume that there were autopsies done of the brains of these individuals.
CROSBYYes. And that's really how they first identified it as an encephalitis. They found swelling in the brain, particularly around the basal ganglia, the mid-section of the brain.
REHMMolly Caldwell Crosby, her new book is titled "Asleep." I see many of you joining us on the phones. You can do that by calling us on 800-433-8850.
REHMAnd here's our first e-mail for Molly Caldwell Crosby, her new book titled "Asleep." This is from Bill in Middletown, Conn. who says, "I can't wait to read Ms. Crosby's book. I first learned about sleeping sickness epidemic through a comic book. Neil Gaiman used the epidemic some 25 or so years ago in his landmark stories about the King of Dreams, the Sandman. I'm wondering if the author knows of any other references to the sickness in fiction or perhaps she's optioned her book for a movie." Now, Oliver Sacks' story of "Awakenings" did, in fact, feature someone in exactly that situation.
CROSBYYes. In fact, it was a group of patients. He was a neurologist working in a hospital for the chronically ill at the end of the 1960s, so really, 40 years after this epidemic. And he found a group of patients. From appearance, they seemed catatonic. They were in wheelchairs, they could not speak, they could not move. Very often they were sort of frozen in different positions. And looking through their case studies, he realized that they had all survived this sleeping sickness epidemic from the '20s and believing that they had a very extreme form of Parkinsonism that had caused them to just become completely still, he started treating them with L-Dopa, which was a new breakthrough treatment for Parkinson's.
CROSBYAnd it's really just a beautiful and poignant story, but also tragic. He was able to awaken these patients. They were able to talk to family members for the first time in 40 years and the saddest part for them, they also realized, the doctors did, that these patients were not out of touch. They were just imprisoned, sort of, in their bodies. They were aware of everything happening around them, what year it was, what was happening and they were not able to maintain the levels of L-Dopa safely to keep any of these patients in their awakened state and slowly they started to return and so it's a very sad but beautiful story.
REHMAnd indeed, for Parkinson's patients today, Carbidopa-Levodopa is exactly the drug that's used to help to modify and to slow down these radical movements.
CROSBYRight. This disease seems to damage dopamine in the brain, so much like Parkinson's does, which is why they think this is a chronic symptom, but it has also appeared -- prior to that, doctors believe there had been sleeping sickness epidemics throughout history for a few hundred years. There's some thought that it could be the inspiration for "Sleeping Beauty," one of our most famous fairytales or "Rip Van Winkle."
CROSBYWashington Irving was living in England at the time and England had had a number of epidemics. Some of Edgar Allan Poe's short stories, like "The Premature Burial" may have been. And to answer the e-mail question, I did run across references to the Sandman and there was also a play in the early 1970s called "Some Kind of Alaska" that was about a woman who had had encephalitis lethargica and awoke years later. I think Judi Dench played her in one of the plays.
REHMAnd here's a question really trying to differentiate the kind of sleeping sickness you're talking about from African sleeping sickness.
CROSBYYes. There was confusion. In fact, when this first broke out and spread to New York, it was New York doctors who believed they should call it epidemic encephalitis to avoid the confusion and this is completely separate from the African sleeping sickness, which is actually a parasite that's spread through the tsetse fly, so a very different type.
REHMSo this particular sleeping sickness did come to the states?
CROSBYIt did. Because of the war, it ended up traveling to London, where they thought it may be some kind of unusual chemical warfare being used on the front. And then it spread to New York because all American troops were departing and arriving through New York. And so by 1919, this disease had literally crossed the globe.
REHMAnd we've got many callers, 800-433-8850. Send us your e-mail to firstname.lastname@example.org. Let's open the phones to go to Birmingham, Mich. Good morning, Sally. I gather you've had some experience.
SALLYHi. Yes. Thank you, Diane, love your show.
SALLYThank you so much. Yes. I heard Molly talking and I felt very interested -- I was very interested in what she was saying. I was a student nurse 50 years ago in the city hospital in Belfast, Northern Ireland. And as it was my first assignment in 17 and a half, 18 years of age, I was assigned the old ward, which had been the work house, so it hadn't changed much. But here I was with 30 patients and they were suffering from, they called it sleeping sickness, encephalitis lethargica.
SALLYAnd these patients were all in various stages of coma. Some of them were ambulatory, but their gait was extremely awkward and they would sleep maybe for a few hours and then they would always be very interested in what time it was. And it was just really ungainly gait. They always looked like they're going to fall over. They would stumble up to the clock to see what time it was and do a very awkward turn, where I thought they would really hit the floor. These were the ones who were ambulatory. Many of them were totally in bed. Bed patients had to be taken care of for bed sores and so forth, but this must've been the end of that epidemic and it was like something out of Dickens, really, because...
REHMYes. Sally, can you tell us how old many of the patients you cared for were?
SALLYThey were probably, I would say, maybe 50, 60...
REHM...and did any of them completely recover?
SALLYNot these ones. If they could recover -- the ones that could get up and walk periodically, they would get out of bed, but it was -- they would've been -- they were a very difficult nursing problem, so most of them were never discharged. They had to be taken care of there and it was an extraordinary situation. The visual is still strong in my mind.
CROSBYIt sounds very much like what Oliver Sacks described and he had not been taught about this disease in medical school when he discovered the patients that had truly been forgotten, but he soon learned that he said, there were institutions all over the world like this with these patients.
SALLYRight. Well, this was one in Belfast, Northern Ireland (unintelligible)...
REHMYes. Sally, I'm so glad you called. You've given us a very vivid portrait and I can understand why it's still very vivid to you. Thanks for calling. We also have Jean, who's in Orlando, Fla. I gather your mother had encephalitis.
JEANYes, she did. She was 12. She was treated at Riley Hospital in Indianapolis, Ind. She -- I think it would've been around 1928 or '29. She had a high fever, she slept for two weeks, all of her hair fell out. When she woke up, she -- for the rest of her life, she was an epileptic, although they kept telling her, you're not an epileptic, you just have spells, you have seizures. They pulled all her teeth trying to find the cause of these seizures. They attributed her encephalitis to having had two smallpox vaccinations. One they thought didn't take and they gave her another one and we always assumed -- we were hesitant to give our children smallpox vaccinations because of my mother's -- well, our belief that this caused her sleeping sickness.
JEANAnd they did call it sleeping sickness. She died at 82 of a massive stroke, but she had lots of -- she had a personality disorder, but it was more pulling into herself and not being able to express emotions, to show love, that kind of thing (unintelligible)...
CROSBYMy grandmother was a little that way. Very removed and sort of detached. Same sort of -- and you brought up the teeth incident. There was a doctor who believed that this may be caused by bacterial teeth infections and so sometimes they did pull the teeth, trying to get rid of the original infection that was causing the encephalitis.
REHMThanks for joining us, Jean. Tell us about this young woman who really became just psychotic and pulled out all her teeth, pulled out her eyes. How in the world did she survive?
CROSBYShe was certainly one of the most extreme cases and this disease did seem to cause nerve damage, especially to teeth, so that may have prompted her to pull her teeth. As far as the self-mutilation, she herself could never explain it. And what was particularly tragic about these young patients who then had these severe or violent psychological changes was they were completely aware of it. When they were usually put into institutions, which they had to be in most cases because they tried to kill siblings or harm parents and attacked people on the streets, the nurses would often say, you can tell them from any of the other violently insane patients because they are completely aware of it. They know what they're doing and they don't know why they do it. Sometimes they would ask to be restrained to keep from hurting people.
REHMThere is a doctor in the book. You talk about Dr. Frederick Tilney. Why was he so important?
CROSBYI was choosing a number of -- the book itself is broken into case studies, as we were discussing, and I was choosing a number of neurologists who were sort of woven in and out of this who were treating a lot of these case studies. And it's a fascinating time in brain study because at this point, they still considered the brain and the mind to be the same specialty. They called it neuropsychiatry. Today, neurology really covers the brain, psychiatry covers the mind. And New York, in particular, had a lot of neurological focus at the time and Tilney was one of these well-known noted neurologists in New York. He treats one of the case -- two of the case studies, actually, including J.P. Morgan's wife and he was also the only neurologist to ever test and see Helen Keller.
CROSBYBy the 1920s, people were questioning whether or not her disabilities were real because she had gone so far beyond them. And he was most interested in how -- his theory was that the brain would compensate in other ways from losing senses. So he would often just test her and in one case, he drove her through the countryside with the windows rolled down and said, tell me what you can tell. And she could tell they were in the countryside. She said, there's smoke in the distance and there was a chimney with smoke. She was just very much in touch with senses and able to do -- answer all of these questions. One of my favorite stories was when he put a coin in her hand and said, this is the one touch of man that makes us all connected. And she just said, pessimist (laugh).
REHMPessimist. Isn't that interesting? Well, and you say he worked with J.P. Morgan's wife. To what extent was he able to help?
CROSBYHe was called in -- really, the family doctor had at that point made a diagnosis, but they knew this was really going to be a big case, international news, so they wanted an expert opinion and called Tilney in and he had also been the physician of J.P. Morgan's mother, so he was familiar with the family. And she did, Jesse Morgan had fallen into a sleeping sickness case in the middle of June. And they truly expected her to recover. They couldn't tell Jack Morgan how long she would be that way, but they said, she's in no pain and she will eventually recover. And sadly, that was not the case and about two months later, her heart stopped.
REHMOh, my goodness.
CROSBYAnd as a result, Jack Morgan donated a large amount of money to the Neurological Institute and Fred Tilney's research.
REHMAnd we're talking about a new book called "Asleep" by Molly Caldwell Crosby. And you're listening to "The Diane Rehm Show." We'll go back to the phones, a caller here in Washington, D.C. Good morning, Leslie. Go right ahead.
LESLIEGood morning. A fascinating show. My 12-year-old daughter has suffered from a neuropsych disorder for the last two years that we believe is related to encephalitis. And as you described, the pediatric reactions, it just struck me that it was so incredibly similar to what we've gone through, only with a twist. In our case, we believe it was strep related, a sudden onset, severe -- very severe OCD with some mild ticking. And...
CROSBYYes. OCD was one of the most common symptoms among these children.
LESLIEWell, you know, the -- what we believe our daughter has had or has is PANDAS. And the theory behind PANDAS, it's Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Sue Swedo at NIH 10 to 15 years ago was one of the first to identify it. And it's very controversial because the theory is that it's an autoimmune reaction and anti-neuronal antibodies get built up and then the body is reacting every time the child is exposed to any type of illness.
LESLIEAnd it triggers this -- and in my case, she looked as if she was psychotic. It was very severe sudden -- the treatment for PANDAS, essentially, the very few doctors that are treating it, is antibiotics, very strong, and/or a steroid burst to reduce the inflammation or in some cases, intravenous immunoglobulin or plasmapheresis, a blood cleansing.
REHMGoodness. How old is she, Leslie?
LESLIEShe's now 12 and the first...
LESLIE...the first onset was -- it was three weeks of sudden onset severe anorexia. And then six months later, this whirlwind of OCD set in. And we had no idea what was going on. And a strong steroid burst and full strength antibiotics kicked her back and I...
REHMAnd what kind of Obsessive Compulsive Disorder did she manifest?
LESLIEEverything from compulsive touching, step stepping, turning around multiple times, feeling like she had the compulsion that she must do repetitive movements or some terrible thing that happened. And then finally, she ended up being absolutely mute for about two weeks.
REHMHave you ever seen that combination of disorders?
CROSBYThere has been a number of recent cases. This disease has never disappeared. And one of the doctors that I spoke with who's working on it today has also published articles on PANDAS and has experienced and studied pediatric cases of that as well. I mean, it's very similar to what she's saying. They believe that especially a strep-type of infection -- as he explained it to me, all living cells are very similar and brain cells in particular can look a lot like bacteria cells, so they believe the body mounts an immune system response and begins attacking the brain cells in addition to the bacteria cells. So they do believe encephalitis lethargica is this type of immune response and...
REHM...how many researchers are out there now looking at this?
CROSBYBased on the articles that I was researching, really, only a handful. There were several -- most of them concentrated in England. There is also one here in the United States, but for whatever reason, England continues to talk about this disease more than the U.S. and study it and research it.
REHMAnd perhaps see more indications of it?
CROSBYThey may be. It's very hard for them to diagnose today because doctors are not prepared to diagnose it. They don't see -- they're not really taught this anymore, they don't know -- they do look for the same set of symptoms, which is a sleep disorder, movement disorder and psychotic disorder.
REHMLeslie, I'm glad you called. Molly Caldwell Crosby is the author of a new book, it's titled "Asleep." We'll take just a short break and when we come back, more of your questions, your e-mails and your tweets.
REHMAnd as we talk about sleeping sickness and the new book titled "Asleep," Molly Caldwell Crosby writes about a version of this that apparently began during the 1918 flu. Here's an interesting e-mail from Patricia who says, "Was this disease just particular to Europe or did it spread worldwide? I've read in various South American novels, for example, "One Hundred Years of Solitude" by Gabriel Garcia Marquez references to the disease, I have vague recollections of a child of my great grandmother in Columbia talking about people sleeping for years and never gave it any importance."
CROSBYYes, it did. It spread around the world in just a matter of a couple of years, so they know that this was not itself contagious and believe it had to have been shadowing another infectious disease in order to spread that quickly. The most obvious would be the 1918 flu, but it could be a number of infections.
REHMAnd apparently there's been a great deal of interest in your book in Asia.
CROSBYYeah, my agent said that they've been getting a lot of orders in Japan and my guess is that they still -- there's Japanese encephalitis, there's a number of different types, we also know West Nile here. This is -- most of those are spread by an insect, however, and this is one that they're -- you know, they're not sure how it's being spread. That's part of the mystery.
REHMHere's an e-mail from Sergio which really answers the former question. He says, "I'm from Buenos Aries, Argentina, although I've lived for a long time in Cary, N.C. Your show just clarified to me what my mother's oldest sister had when she was a teenager. My aunt was born in Argentina around 1910. She always talked about having had encephalitis lethargica. She would tell me she had seizures for most of her adult life that subsided when she was about 60 years old. She was always weird and she knew it. She was unable to finish high school as a result. One good thing, she was the happiest person you could find. Her spirits were always high. She died in her 80s of unrelated causes."
CROSBYWow. At least that was a happier circumstance.
REHMYeah, a happier version. All right. Let's go back to the phones and to Lake Park, Ga. Good morning, Golly, you're on the air.
GOLLYGood morning, ladies. I was wondering if this is possibly a residual trait because we lived indoors when ancient, you know, civilizations were bitten. I mean, you know, we've -- air conditioning and living indoors has radically changed our entire system and we used to be a race of people, the human race was bitten. And I was wondering what studies have been done with herdsman and shepherds and people that are tremendously plagued by -- you know, by insect bites.
CROSBYI'm not really sure because this particular form of encephalitis was not spread by insect bites, but it was closely followed by St. Louis encephalitis which was, so, you know, they went straight from the 1920s of studying this into the 1930s of studying that. And actually, the first book I wrote was on yellow fever, so I -- yeah, I was very interested in how lifestyles have changed and affected the spread of insect born diseases.
REHMSo for example, a bite by the tsetse fly...
REHM...would be totally unrelated to what you've been studying here?
CROSBYRight. If it's insect spread, then in the case of the tsetse fly, it's a parasite that gets into the blood stream. In the case of yellow fever, it's a virus, so the insect is really just sort of the vehicle in which the disease is traveling.
REHMAll right. To Cincinnati, Ohio. Good morning, Rick.
REHMHi, there. You're on the air.
RICKOh, good morning.
REHMGood morning, sir.
RICKI had encephalitis when I was three years old. Now, from what I understood, did it, I guess, kill some of your brain cells or something or.
CROSBYYes. From my understanding was that it does, in particular with this type of it, with dopamine cell neurotransmitters and other parts of the brain and some of what -- neuroanatomy is certainly challenging, but some of what I was understanding was when that happens other neurotransmitters, other messages within the brain begin flooding the system and that's some of why OCD happens, for example. The brain is being flooded by these messages to repeat and do these compulsive disorders and their logic is unable to override that.
REHMHere's an interesting e-mail from Joan in Overland Park, Kan. She says, "In 1972, I was studying neurology at the National Hospital in Queen Square, London. A teenage girl had been transferred from India and she had sleeping sickness after a viral infection." So it can still happen.
CROSBYIt does. The BBC actually did a documentary a couple of years ago. The final case study in my book is of a boy who came down with sleeping sickness in the 1920s, a very bright normal child. And he was taken to the hospital. He was there seven decades later. They found him. He died in 2004, I believe, and his brain was donated to science to see if they could find -- they're using archived brain tissues from the 1918 flu. They're trying everything they can to locate whether or not this is a virus, if they're finding RNA strains, which they've not been able to connect yet.
CROSBYBut even as late as this fall, some -- a group of doctors working out of St. Jude in Memphis have found that there seemed to be more neurological complications associated with any kind of avian flu strain, which is what 1918 was. It's not what we've seen mostly recently. H1N1 in 2009 was not, but H5N1 was another recent avian flu strain and it may be that the body kind of overreacts to that particular type of strain.
REHMSo what you're suggesting is that this could happen again on a widespread basis?
CROSBYRight. If it is an immune response and we do get introduced to some highly virulent form like the 1918 flu was, then that would be cause for concern, so.
REHMAnd of course, when the H1N1 did appear, some people were worried it would be comparable to the 1918 flu.
CROSBYYes. And fortunately did not turn out to be as virulent.
REHMTo Rochester, N.Y. Vincent, I gather you had encephalitis.
VINCENTYes, hi. Thanks for taking my call.
VINCENTI listen to your show a lot and never had anything to call about, so -- and this is very, very interesting to me, but, yes, I did have encephalitis when I was 12 years old. I will be 50 years old in a month. And I guess I'm one of the few that made a full and complete recovery, so I guess I wanted to send out, I heard some people call in about they had sons and daughters that are sick with this illness, kind of a message of hope. My parents were told by doctors that if I did make it, I would be incapacitated for the rest of my life, so wouldn't ever make a full recovery or that there's a good chance I wouldn't make it at all.
VINCENTApparently, I was in the hospital for a few days only, but then in bed at home for three or four months and just woke up one day and said, hey, Mom, have I been sick? And that was it. I had -- it was a viral -- in retrospect, it was found out it was a viral infection that just kind of lodged itself, I guess, apparently, in a part of my brain that affected -- that caused me to have the sleeping sickness.
REHMAnd right now you're just fine?
VINCENTAbsolutely. I mean, like I say, I'm gonna be 50 years old. I'm in the best shape of my life and race mountain bikes and, yeah, so...
REHMI'm so glad. Well, you indeed are one of the lucky ones, Vincent. How often does that happen?
CROSBYDuring the epidemic itself, it was about a third of the cases.
REHMA third completely recovered being able to resume a normal life?
CROSBYI assume so. I don't know, for example, if my grandmother would've been considered fully recovered. She did exhibit some unusual behavior at times. She seemed detached or depressed and everyone in the family just said, oh, it was the sleeping sickness that did it, o I don't know if she would actually fall into the camp of someone who recovered or was -- had a disability from it.
REHMWell, Vincent, congratulations on turning 50.
CROSBYThat is a good story.
REHMKeep up that bike riding. Here's an e-mail from Judy in Bloomfield Hills, Mich. She says, "My husband almost died of encephalitis in the '60s, but it was a result of a virus that migrated to the brain. I know this can happen after something like measles, mumps, et cetera, though his was from micro plasma pneumonia. How does this relate to the encephalitis you're talking about?"
CROSBYI don't know enough about micro plasma pneumonia to answer that particular question, but one thing that I found in the research that was really interesting to me was they have now determined that most people who died during the 1918 flu didn't die of the flu virus. They died of secondary infections, bacterial infections, pneumonia. And so pneumonia was probably the leading cause of death during that actual 1918. And pneumonia -- that bacterial pneumonia is caused by strep A, the same strep that they're studying for throats that causes PANDA, so it's interesting. There are two different camps as to whether it's viral or bacterial.
CROSBYThey're both compelling, they both have great information, but no answers.
REHMI have been told that this spasmodic dysphonia begins in the basal ganglia of the brain sending an incorrect message to the vocal cords telling them to clamp down inappropriately, which is why I receive the injection of BOTOX directly into the vocal cords once every four months. I'm very lucky I'm awake on the job.
CROSBYRight. This encephalitis lethargica damages the basal ganglia.
CROSBYThat is the problem with it and that -- the basal ganglia, they serve as the switchboard within the brain.
CROSBYAll the messages are going through there.
CROSBYSo if they start sending static messages, there are problems.
REHMNow, here's an e-mail from Alice in Frederick, Md. She says, "I have a good friend with narcolepsy and wondered if you could clarify the difference."
CROSBYThat's a good question, too. The actual physician, Constantin von Economo, who was the Viennese physician who first recognized this and named it encephalitis lethargica, was also doing research on the thalamus and hypothalamus of the brain, which also seemed to be affected by encephalitis lethargica. And he was one of the first to identify narcolepsy and insomnia and which part of the brain was controlling it. I don't know enough about narcolepsy to answer the question, other than I don't know if it's a long-term disorder or if it puts people into a permanent state of sleep, which was what this disease was doing.
REHMMy understanding is that narcolepsy exhibits in sort of falling asleep anywhere, but...
REHM...waking up shortly thereafter.
CROSBYRight. Not the long spells of sleep.
REHMExactly. Which is why people with narcolepsy either have to be on some kind of medication or should not be behind the wheel of a car.
REHMAnd you're listening to "The Diane Rehm Show." Here's an e-mail from Sue in Wellfleet, Mass. She says, "When I was in my early 20s, I had mononucleosis, a bad case. I would fall into deep long sleeps. They were frightening because I could hear everything going on around me. I couldn't open my eyes or move my body. Did the author come across any incidents of mono and sleeping sickness?"
CROSBYI did not. That's an interesting question.
REHMIsn't it, though.
CROSBYI did run across there's -- this disease has been linked to measles in the past. It's been linked to a number of different infections where, again, it was just the immune system responding, so that very well could've been the case with mono.
REHMHere's a caller in Wooster, Ohio. Good morning, Julia.
JULIAGood morning. I want you to -- I want to thank you for your wonderful program.
JULIARight now, I am shaking. The reason why is your guest today has answered a question for me. My family -- of course, I'm first generation born in America. The child that was born, Polly, got the Spanish flu. My mother told me how she hated that child. That child would be absolutely uncontrollable, have fits of temper that no one could do anything about. My grandmother went to church to pray for the child. Okay.
JULIAAnd what happened was that the child died 'cause my grandfather bundled her up to take her to visit some relatives. But I want to thank you for your guest today and the program. You have answered the question. I thought we had insanity in the family and now you have answered the question that this child had repercussions from this Spanish flu. I will buy the book and keep it so that my children understand this. Thank you so much.
REHMJudith, thank you for calling. And finally, let's go to Baltimore, Md. Jean, you're on the air.
JEANHi, good morning, ladies.
JEANI have a question and you may have eluded to it already, but my mother was born in 1918 and had what the family termed sleeping sickness and then came out of it and lived a somewhat normal life, except for she suffered from chronic depression her whole life. And I thought I...
CROSBYThat was very common, yes.
JEANOkay. I thought I had read somewhere that that could've been a cause of the sleeping sickness, but I wanted to know what you thought. And so you're saying yes?
CROSBYWell, depression was one of the most common symptoms, particularly in women who survived.
REHMYou were saying after they experienced this sleeping sickness...
CROSBYRight. It was -- yes, it was one of the chronic symptoms that developed later in life or immediately sometimes in the cases of adults, but that was one of the most common.
REHMAnd simply exhibiting in withdrawal and quietness and...
CROSBYAnd sadly, suicidal behavior a lot of times.
REHMOh, I see. I see. Does that make sense, Jean?
JEANIt does. And thank you very much. I look forward to reading your book.
REHMThanks so much. This book that you've done after doing the book on yellow fever, really full circle, isn't it?
CROSBYIt is and I didn't really intend to do another medical history, but it was such a great window of time and a personal story to me because of my grandmother and really, most of my books tend to have a lot of social history and the focus more on the people and the doctors and the patients themselves, so to me, it's more about people than diseases.
REHMMolly Caldwell Crosby, her new book is titled "Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries." Thanks for listening, all. I'm Diane Rehm.
ANNOUNCER"The Diane Rehm Show" is produced by Sandra Pinkard, Nancy Robertson, Jonathan Smith, Susan Nabors, Denise Couture and Monique Nazareth. The engineer is Tobey Schreiner. Dorie Anisman answers the phones. Visit drshow.org for audio archives and CD sales, transcripts from Soft Scribe and Podcast. Call 202-885-1200 for more information.
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