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Welcome to Stuff You Should Know, a production of iHeartRadio.
Hey, and welcome to the podcast.
I'm Josh, and there's Chuck, and Jerry's here too.
And this is a good old-fashioned Stuff You Should Know medical mystery episode.
That's right.
Look at Jerry over there.
She's just sitting there.
She's frozen.
And what you can do is I don't know if you know this, Josh if you walk over to Jerry and take her hand off the keyboard and raise it above her head, she'll just keep it there until you move it back down.
Well, Chuck, it sounds a lot to me like Jerry might have chronic encephalitic lethargica.
I think you might be right.
I might be right.
I might be partially right.
I think I would have been more right if I had called it encephalitis lethargica.
But that's probably what she has if those are her symptoms.
That's right.
File this under medical mysteries and also file it under a Julia jam.
Mm-hmm.
But we're basically going to call it EL or encephalitis lethargica here and there.
It was also known as the sleepy sickness, sometimes the sleeping sickness, although there's a new sleeping sickness that is not to be confused with the previous one.
No, it's spread by the tsetse fly and it's epidemic.
I don't think it's endemic yet in Africa.
And it has got a couple of similar symptoms, but they're in no way related from what I understand.
That's right.
We're talking about an outbreak that happened in the early 20th century in Europe, starting in about 1916, wherein all of a sudden people would kind of out of nowhere, they would lose mobility, some people would fall into like a coma-like state or a sleep-like state.
Many, many people would die within days and it reached epidemic proportions in at least four continents by 1919, killed hundreds of thousands of people.
And it's a medical mystery because we still don't know exactly why it happened or why it just kind of suddenly went away.
Yeah.
Where it came from, what caused it?
Nothing.
We don't know almost anything about it.
They just kind of know the symptoms enough that when you see the very very, very rare case come along these days you can say I think this actually is encephalitis lethargica.
Yeah.
Yeah.
Yeah.
Yeah. at all.
And they were just sitting like that.
That's the kind of like horrible symptom that you could suffer from for decades.
Like once that started.
It might just keep going on for the rest of your life, even though this happened to you in childhood.
Yeah, exactly.
So and there's a bit of a reveal that we're going to hang on to here.
But we're going to start off with not a reveal, because that's not how you do things in the three-act structure.
Not in the podcast biz.
No, no, no.
We're going to start out in 1916 with a Dr. Konstantin von, is it Economo or Economo?
I like the first one.
That's like saying, is it Economy or Economy?
This sounds to me like a Cosmo Kramer alias.
Why don't you just tell me the name of the movie you want to see?
I'll never not laugh at that bit.
No, it's a good one.
Oh, boy.
So he was a doctor at the University of Vienna's Psychiatric Neurological Clinic.
And he started seeing some strange cases come through his office in 1916.
Where the symptoms were, you know, they had diagnoses on the charts, things like meningitis or MS or delirium.
But the symptoms weren't matching these things or anything else that he could think of.
Yeah.
And the first thing he did was ruled out neurological toxins, infections and neurological disorders and then was like all right, I'm open here.
Let's like no one knows what this is and we need to figure it out.
So let's sort of put our minds to this thing.
Yeah, he dove in.
He started describing it.
He wasn't actually the first one to describe it.
I think he was actually beaten by a couple of days even though some people say it was the opposite way around by a French physician named Dr René Crouchet.
The difference was Dr. Crouchet's take was that this was maybe a behavioral disorder.
And Dr Economo Von Economo said no, this is like clearly some sort of infection or something like that.
It's an epidemic.
It's transmissible.
So that's why this is sometimes called Von Economo encephalitis.
It was essentially named after him because he was the guy who said, this is what's going on.
This is what I think is going on.
Check out these nutso symptoms.
Right.
Not so nuts at first, because when people would come in at first they had basically looked like the flu.
You know, fever, coughing, you know, kind of what you would think of.
Everyone's had the flu, right?
Yeah.
I don't have to.
Yeah, there you go.
I watched Zoolander recently.
You know, a picture is worth a thousand words.
A Josh impression of the flu was worth at least 20 of my words.
All right.
Thanks.
Was that part of Zoolander?
Yeah, he had the black lung when he went back home to mine coal with his dad.
Oh, I love that dumb movie.
It is a really great dumb movie.
I was like, this is pretty great still.
All right.
So flu-like symptoms at first, then just a huge array of neurological symptoms that were really inconsistent among the patients, the severity of which was pretty inconsistent.
Sometimes it varied widely from one to another.
But one of the most common threads of these neurological symptoms was something called hypersomnolence, which is just really really sleepy, like feeling really sleepy.
And then eventually it could lead to that coma-like state where you're just sort of locked in.
So here's the thing.
So the sleep, the type of sleep, though that is common among people struck with encephalitis lethargica, is not what you would consider sleep.
They're not getting rest.
You can wake them very easily.
They are probably semi-aware of what was going on around them the whole time they were sleeping.
Yeah.
But they couldn't not fall asleep.
Another thing that sometimes gets chalked up under this hypersomnolence is freezing mid-action.
Like maybe they're taking a bite of broccoli.
That's a bad example because they probably are like, I can't make myself eat this broccoli.
It's so disgusting.
But let's say they're eating like a delicious animal cracker and they stopped mid-bite.
They might not move again or they might like hear a song or something like that.
And all of a sudden they start eating the the the animal cracker again.
Yeah.
It's not.
The point is, it's called the sleeping sickness.
It's not sleep as you would understand it.
Yeah.
Yeah.
That's good to clear that up.
Thanks.
Because sleeping sickness sounds pretty good to me right about now.
It kind of does.
Half of these cases is pretty wide age range.
About half of them were in people age 10 to 30.
Like I said, a lot of the patients died.
Sometimes they died within like a week or two after onset of symptoms.
There was one case of a girl who was walking home from a concert suddenly experienced a paralysis, fell asleep within about a half hour and died less than two weeks later.
There was also some weird stuff, as we'll see, that had to do with psychiatric symptoms, where sometimes people would be fine after suffering from this for a couple of weeks, but their personality would have changed.
There was one report of, I guess, a study found four reports of people who developed kleptomania after having suffered this and then ostensibly were cured from it.
So like it could really mess with your head essentially in just about any way your head can be messed with.
Did Winona Ryder claim that?
Remember when she was stealing stuff?
Oh, yeah, I remember.
It was a big deal.
She came back pretty strong, which I'm glad.
I like Winona Ryder.
She does a great job in Stranger Things.
Oh, she's awesome in everything she's ever been in.
Heather's Dude is one of the all-time great movies.
She was great in Mermaids.
And then, yeah, all the way through to Beetlejuice.
I'm not going to say Beetlejuice, Beetlejuice, but definitely Beetlejuice.
And then Stranger Things, sure.
Yeah, and a great crush of much of Gen X.
For sure.
Both dudes and chicks.
You got that straight.
We're talking Gen X. You still say dudes and chicks?
Gen X says that.
Yeah, they do.
All right.
So, Von Economo was studying all these people.
He was studying corpses of these people.
He finally breaks it down into its subgroups, the first of which is acute EL.
That is the initial sickness that you're going to get.
We talked about the flu-y kind of stuff that you get and all these neurological symptoms that are going to follow.
Then he broke those down into three forms, from most common to least common, starting with the most common somnolent ophthalmologic.
How would you say that?
Ophthalmologic?
Ophthalmoplegic.
That's what I'm going with.
All right.
That's the most deadly form.
More than half the patients die when they have this form.
This is a really overwhelming sleepiness.
But like you said, you're aware, you're easy to wake up.
The optimal part is ocular paralysis.
So you're not moving your eyes.
So if people come and they wave their hand in front of your face, your eyes aren't moving or anything like that.
And also those neuropsychiatric symptoms that you were talking about, like delirium sometimes confusion catatonia stupor, stuff like that.
There was also the worst report that I saw.
And like I didn't see anything like this, but I checked and it does seem to have been a case report of a girl from the 30s who basically had a psychotic break because of it.
And she pulled out all of her own teeth and gouged out both of her eyes.
A little girl did because of this.
Jesus.
And again, it's just some weird outlier symptom.
But as you see, we get further and further into this.
It's just the brain getting eaten up somehow, some way in some fairly predictable region.
So it's creating this whole cascade, or galaxy of different symptoms that are just the worst things that can happen to your brain happening.
Yeah.
The next subgroup, the next least common, or I guess the next most common, depending on which way you're looking at it, is hyperkinetic.
That is mania, basically, is the big part of this one.
You have a manic phase involuntary vocalizations and kind of herky-jerky movements and then a hypomanic phase where there's a lot of fatigue, a lot of weakness.
You can hallucinate.
You can have nerve pain in your limbs and in your face.
And this is one of the odder symptoms, is your sleep pattern will flip from day to night or, I guess, night to day if you were a factory worker or something.
And there's another thing with that sleeping sickness part, you know, like your sleep is messed up.
I also saw Chuck, that in at least one of these people might also be super sleepy but not be able to fall asleep, no matter how hard they try, which sounds worse to me than most of the other stuff.
For sure.
There's a third one that he said is the least common, but it's also a way that it can present.
It's called amniostatic akinetic, which is you can't move, akinesis.
And this is kind of what the classic idea of what encephalitis lethargica looks like, where you're just sitting there with like yeah, your right arm's in the air, your left arm's a little further down, your mouth's open.
You're basically a statue essentially is how it's described.
You're frozen in place and you're not going to move until somebody maybe put some slight pressure on your arm and then maybe you'll move it down.
But it's not like they're just going to put pressure on your arm for a second and then you move your arm down.
Like they have to move your arm down.
And this is what's called waxy flexibility.
You can pose somebody in this state any way that you want them to.
So you have to be very kind when you're dealing with patients like this.
Yeah.
I could not help but think that Waxy Flexibility sounds like an album title.
For sure.
Like guided by voices or somebody.
Um, lips ink.
Is that a real band?
Yeah.
They're a funky town people.
Oh, Oh, okay.
Yeah.
Oh, waxy flexibility.
Sure.
Nailed it.
Guided by voices.
What was I thinking?
This is the, um, the biggest part to me.
That's, I guess, part of all of this, because of the sleeping part.
The people suffering this, including the people who are, are wax figures frozen in place for years or decades, potentially um are there mentally.
They're not like locked in, as in locked in syndrome, where they know every single thing that's going on around them at all times.
Right.
But they're essentially in the same boat, where they're aware of stuff, they're aware of time passing, they're aware of people coming and going and interacting with them.
They cannot... respond.
They can't speak.
They can't change their position of their eyes.
They can't focus their attention.
They can't do anything that would suggest to anyone that they are there in any way, shape or form.
And it wasn't until a genuine medical miracle took place that we understood.
Oh my God, these people have been there in their heads the whole time.
They're not just like comatose, like just completely out of consciousness.
They're conscious.
Yeah.
Yeah, for sure.
And, you know, earlier I said like they're locked in.
I didn't mean the literal locked in syndrome.
I just meant sort of, you know, look like they're locked in.
Right.
Yeah.
I didn't take it like that.
Yeah.
But I think people might have.
So, you know.
Well, come on, guys.
We don't know how many cases there were.
It was a legitimate pandemic, though.
It's one of those things that was hard to diagnose.
They think it was underdiagnosed and reported.
Estimates run from 500,000 to more than a million.
But they think that maybe half of the cases weren't even reported.
So who knows how many it could have been.
And about a third of them died.
A third survived and were kind of OK.
And then a third survived and then got it again later on.
And that is acute EL.
So maybe we should take a break and talk about chronic EL after this.
Let's.
All right.
We'll be right back.
We'll be right back.
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Finding empowerment in the community is critical.
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Okay Chuck, so a lot of the stuff I was talking about, about people being frozen in place as if they were statues.
They had waxy flexibility mutism, catatonia.
They weren't able to respond or move or anything.
When I said for like years or decades, More accurately I would have been referring to the chronic form of encephalitis lethargica, because it was essentially, it seems to me kind of like amniostatic akinetic, but for years and years.
The scariest part about all this was that you had gone through the standard case of encephalitis lethargica, one of those three that we just talked about.
And got better.
You may have died.
You may have gotten better, but maybe you had like behavior changes, like you turned into a kleptomaniac or something like that.
Or you got better and thought everything was fine, but then you suddenly suffered from being just a ton of bricks being dropped on you.
And all of a sudden you can't move for the rest of your life, even though it's been 10 years since you had that case of encephalitis lethargica.
Yeah.
Yeah, for sure.
The chronic is much the same as the earlier, but with a few added symptoms, one of which is very, very strange.
You can have mood swings, pretty normal.
Feelings of euphoria and maybe even an increased libido, which is not the weirdest thing.
Psychosis in about 30 of patients again, not the most abnormal thing in the world, but excessive silliness and the use of puns was an actual symptom that they saw over and over again in acute cases.
Yeah.
Isn't that bizarre?
Or not acute in chronic cases.
Right.
Yeah.
Yeah.
But again, the defining trait, the one that people would point to and be like, oh, that person has chronic encephalitis lethargica, is that statue thing that I was talking about.
And that's more clinically called rather than that statue thing.
Doctors tend to call it post-encephalitic Parkinsonism.
And Parkinsonism is one of those difficult things to grasp until you just stop trying to think too hard about it.
It's essentially a bunch of movement and neurological symptoms and dysfunctions.
And Parkinson's includes Parkinsonism, but not all Parkinsonism is Parkinson's disease.
That's right.
Okay.
It took me way longer than I care to admit to finally just nail that down and stop running in circles trying to figure it out.
Yeah, I mean, I think they even one of the reasons they call it post-encephalitic Parkinsonism, Parkinsonism.
Parkinsonism, geez, that's a tough one.
I know.
Or PEP is to distinguish it from Parkinson's, which isn't exactly the same thing.
Yeah, and one of the big things that distinguish it because that shares a lot of symptoms.
But one of the things that distinguishes post-encephalitic Parkinsonism and Parkinson's disease is that Parkinson's disease progresses gradually in a predictable pattern.
Post-encephalitic Parkinsonism, like I said, it can come out of the blue.
You could be again sitting there eating an animal cracker and all of a sudden, you never finish eating that animal cracker for the rest of your life.
It just can suddenly come out of nowhere.
And you're just living your normal life.
And then, all of a sudden, you're in an institution and you're bound never to move again, unless you happen to be in the right place at the right time in the late 1960s.
That's right, and this is the big reveal.
If you were hearing these symptoms and you think hey, that sounds awfully familiar.
I think I saw a movie about that, then you're correct.
This is the movie from the book Awakenings, based on neurologist Oliver Sacks' book of the same name about his work with EL patients in the 1960s.
I think there were 80 chronic EL patients he worked with at Beth Abraham Hospital in the Bronx, New York, in 1966.
So when this came around and Oliver Sacks was in there, EL had gone away, basically.
It was a medical footnote.
And not a lot of people in the 1960s even knew much about it, because it was one of those things that, like they never figured out what it was or how it started or how to cure it or anything.
It kind of just went away.
So all the doctors were like, all right, thank God.
I guess we don't have to worry about that anymore.
Right.
And they just moved on to their other work.
There was a 1985 NPR interview where he was talking about motionless figures who were transfixed in strange postures, sometimes rather dramatic postures, sometimes not, with an absolute absence of motion, without any hint of motion.
So everything looked frozen.
And that was, you know, Robert De Niro's character in the movie Awakenings.
Yeah.
And all the others that he eventually grabbed together.
Yeah.
And assembled.
When's the last time you saw Awakenings?
It's been a while.
I think I remember thinking it was a pretty good movie back then, though.
It's a great movie.
Yeah.
I watched it last night.
Who directed that?
Do you know?
Laverne.
Oh, was that Penny Marshall?
Yeah.
She did a great job.
It was great.
I mean like I don't remember if De Niro got an Oscar or not, but if he didn't, that's one of the all-time great snubs.
Yeah.
He did amazing.
I forgot how wonderful Robin Williams is, too.
Just, man, what a great guy that dude was.
Great dude.
Great movie, too.
I was watching a thing with him this morning and very, very sad stuff.
What were you watching?
It was an Instagram post of him with his mother and his mother making him laugh.
And I think the whole point of the post was like you rarely got to hear Robin Williams like genuine laugh.
And I heard it and I was like, yeah, I don't know if I really ever heard that.
And his mom made him laugh that hard.
It was really sweet.
Can you do an impression?
It was kind of a ha-ha-ha thing.
Oh.
I mean, not like that.
It was exuberant, but it was like, ha-ha-ha-ha.
Not like my goofy childish laugh.
I got you.
Yeah.
So, good movie.
And it was 100% based on this.
So much so that... It's funny.
They went to the trouble of changing the names of the changed names that Oliver Sacks had in the book.
Wow.
So, yeah.
So, Awakenings actually is pretty...
And in a lot of ways, I mean, there's a lot of like movie stuff, literary license in there.
But for the most part, it's pretty faithful to Oliver Sacks book.
And again it's nonfiction.
Like Sacks is a neurologist, or he was a great neurologist and a great writer too.
So he didn't take a lot of literary license as far as I understand.
So the movie being close to the book means the movie was fairly close to real life.
And one of the tests that Oliver Sacks conducted was he would demonstrate that these people had demonstrated what's called paradoxical kinesia, where Somebody who seemingly can't move and hasn't moved for days months, however long it was since the last time somebody moved them, could suddenly move in a way that they just should not be able to.
And the way that he demonstrates it in the movie and, I believe, in the book he did this too was he would toss them a ball.
And all of a sudden, somebody who's just sitting there with their hands in the air and their face frozen in this mask is expressionless mask, just suddenly moves their hand without even moving their eyes and catches the ball.
And that was, I think again, at least in the movie I haven't read the book how he identified people in this what they call the chronic hospital that he worked at in the Bronx, by finding somebody who kind of fit these symptoms and then tossing a ball at them.
And there's a very cute funny part where he does it to one person and she gets hit in the face and is like ow, why'd you do that?
She clearly didn't have encephalitis lethargica.
It's pretty cute.
It sounded a couple of minutes ago, like you said, Oliver Sachs.
I know, and I didn't correct myself.
You're an all-time great conversation analyst, though, for noticing that.
Well, I just, I mean, that's a different movie altogether.
Oliver Six.
Yeah, also called Awakening, so.
God, was that a couple minutes ago?
Have I been talking that much?
Oh, I have no sense of time.
It might have been 10 seconds.
That was amazing, Chuck.
You've been killing it with the jokes lately.
Oh, thanks.
One of the things you mentioned there is like they could catch a ball or something.
Another thing that would happen, like he said, that if there was an emergency, like another patient falls on the floor all of a sudden, somebody who, like previously, has not moved for days or weeks or months, might just leap up out of their wheelchair and assist them and then sit back down and go back to their statue pose.
And that phenomenon that you're talking about is that's the big key difference between PEP and Parkinson's disease is called kinesioparadoxical, where you're switching, you know, between mobility and immobility.
And that is not something that happens generally in Parkinson's.
No, but I saw that it does some.
So yeah, but I think for the most part it's more associated with chronic encephalitis lethargica, right.
So this original thing where this disease, this mysterious disease, encephalitis lethargica, suddenly appeared out of nowhere in 1915-16, ravaged the world for 10 years and then just vanished.
And, like you said, led a whole generation of neurologists off the hook for having to explain what it was.
Like, they really tried.
Like, people like Von Economo really tried to figure this out.
I think 9,000 papers were written during this epidemic.
And there were some things that they kind of were able to pin down, but the big, big questions were just left unanswered.
We just don't know.
Like, one of the big ones is, how do you even catch this terrible disease?
Right.
Yeah.
Like, is it contagious or not?
They still didn't have a definitive answer at the end of their study on that.
Evidence on transmission was really, really mixed.
There were a couple of anecdotal cases that kind of illustrate that.
One of them that was among seven members of a family in a small apartment.
Only one family member got sick.
Another case.
There was a girl living at something called the Derby and Derbyshire Rescue and Training Home showed signs of EL and then very soon, within two weeks, 12 of the 21 residents got sick.
So, you know, both cases, like one looks clearly contagious.
The other one doesn't look like it's at all contagious.
So they didn't know.
Maybe they thought some people might be immune.
Maybe there were different strains that were contagious or had different levels of contagiousness.
Or maybe it's just something that they never figured out.
Yeah, and I was wondering too if the 12 of the 21 residents getting sick at that one home was maybe just a case of mass hysteria or something like that.
Interesting, yeah.
No, I think half of the people who got sick died within 10 days of falling ill.
So they were not, that was not mass hysteria.
So that is just a genuine mystery.
Right.
Like this just doesn't make any kind of sense whatsoever.
So they started trying to rule out things they thought it wasn't.
Right.
One was environmental causes.
So that would make it toxic encephalitis.
And I don't even know if we said at the outset did you think that encephalitis is swelling of the brain and spinal cord?
Oh, no.
Okay.
I didn't say that.
So I'm sure everybody got like a pretty good idea that encephalitis is something bad that you don't want to have.
Right.
But what it is is a condition where your brain and or your spinal cord swells and it can start taking on water.
And from doing that, all sorts of terrible things can happen.
The thing is, is encephalitis is not just specific to encephalitis lethargica.
A lot of different things can make your brain and central nervous system swell.
A disturbing amount of things can make that happen, actually, if you stop and think about it.
And one of those things is environmental toxins.
So that's toxic encephalitis.
And that got ruled out very quickly because there just was no pattern whatsoever where everybody was exposed to, you know, like a Tesseract made of kryptonite or something like that for our nerd fans.
Yeah.
Yeah, that was good.
I tried to touch you guys' bone and just screwed it up royally.
So I'm sorry.
I think I may have just conflated DC and Marvel.
Oh, yeah, yeah.
Tesseract is Marvel.
I'm dead, dude.
No, I love it.
I love it, man.
You should meld those.
Superman meets Thanos.
Sure.
I want to see those dudes fight.
Oh, that'd be great.
I'm sure that would be a really interesting fight to watch.
Somebody's going to write in and say actually guys, it happened in 1987 when, you know, some dude put out a comic.
I suspect that those people aren't going to speak to us any longer.
I think you're right.
So, like you said, they rule that out, the toxic exposure.
Then they move on to an infectious kind of possibility, infectious encephalitis, in fact.
And that can be, you know, infectious encephalitis is a thing.
So it's not like we think it's that.
That was already a thing.
It can be secondary to bacterial or fungal or viral or parasitic infection.
It's usually a virus.
It's the most common type of encephalitis.
It could be like from the herpes virus or maybe measles or West Nile even, influenza.
And considering how this went on during the Spanish flu initially, which happened in 1918, and there were flu-like symptoms, they thought that this probably, early on at least, was an influenza-led infectious encephalitis.
Yeah.
And that was, I think, Von Economo's leading theory, which makes a lot of sense because they tracked with one another, like you said, at least the start.
So was this just some horrible strain of Spanish flu that managed to continue on for years after Spanish flu?
And I think that was incontrovertibly proven incorrect because actually when I did The End of the World, I talked about this guy who went up and dug up the corpse of an Inuit woman who had died from Spanish flu to get enough of the genome of it to bring the Spanish flu back to life to study it.
It's one of the most... breathtakingly arrogant moments in all of science for somebody to do that.
But the reason we know that encephalitis lethargica wasn't caused by the Spanish flu is because we had the Spanish flu genome and we couldn't find any Spanish flu RNA in collections of tissue samples of brains of people who definitely died from encephalitis lethargica.
Spanish flu wasn't there.
Ergo, it wasn't Spanish flu.
And because Josh is always too humble to say so after an end of the world, reference everyone.
If you don't know, Josh had a great solo album, a eight part or 10 part.
It was a 10 part subtitled Waxy Flexibility.
The End of the World with Josh Clark, where and he one episode at a time examined 10.
I can't think of the word existential risks that could face humanity, some of which are currently underway.
Thanks a lot, Chuck.
I appreciate that.
That was really nice.
Yeah, it's very great.
You got you got to be a smarty pants.
But even if you're not a smarty pants, you should still give it a shot, I think, because I gave it a shot and I'm not a smarty pants.
Hey, you are a smarty pants.
But yes, smarty pants or no, I think everybody can be equally scared by this.
Yeah, you did live shows too.
So if you have a time machine on your hands, go back and see one of those while you're at it.
And come talk to us if you have an actual working time machine as well.
That'd be pretty neat.
Streptococcal infection was another possibility at one point.
There was some data that showed infection with streptococcal bacteria was in front of some of these cases of EL.
And in 1931 our old pal Dr Yvonne Economo did an experiment and streptococcus vaccination actually led to an EL-like condition in dogs.
Yeah.
It's just sad, but... Yeah.
The thing is, the thing that makes it even more sad is it wasn't definitive.
They weren't like, oh, it's a strep infection.
Right.
It was like, I guess it could have been.
There was another group called the Matheson Commission that studied encephalitis lethargica, because a guy ostensibly by the last name of Matheson.
I couldn't find out who it was.
He was a wealthy businessman from America who had been struck down by encephalitis lethargica.
I believe he had gotten better, but not fully.
And so he used some money to try to get to the bottom of this and funded this commission for 13 years.
They put out four different reports and basically at the end said, maybe herpes?
We don't know.
And he said, your funding's cut off.
I've gotten into Sherlock Holmes societies.
That's who I'm funding now.
At the end of all that dough for that many years, you come back with maybe herpes?
Are you kidding me?
At the very least, give me herpes too.
Right.
That reminds me when I was a kid.
I'll never forget one of the first headlines that ever sunk in with me, because I was a Who's the Boss fan a little bit at the time.
It had to be the Enquirer or something, but it was, Tony Danza gave me herpes.
And I looked just yesterday to see if Tony Danza actually had ever given anyone herpes, and it does not seem to be the case.
I don't believe Tony Danza has herpes.
So that headline was totally made up.
And I hope Tony Danza got some money from that for suing the Enquirer.
Yeah.
Oh, we should issue that correction, too.
You got that Tony Danza band name wrong.
Oh, I did.
In the metal episodes.
Do you know what the correct one was?
Well, what do you what did you call it?
I think I call it the Tony Danza tap dance experience.
Is that not it?
I think if that's what you said, I think it was a tap dance extravaganza.
OK.
Or it's the other way around.
Whichever one you said was wrong.
That's fine.
I can live with that.
Yeah, yeah, we had a few metal people write in about that.
So can't, you know, can't not correct the Tony Danza tap dance extravaganza.
I'll bet they were nice, though.
Like to a person.
Pretty much all the metal fans that wrote in said even the ones correcting us, were like that was great.
Yeah, that's the metal way.
It is.
All right, shall we take our other break?
Yeah, sure.
All right, we'll be right back.
Wait.
Wait.
We'll be right back.
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All right.
So we mentioned some people studying, you know, different causes back in the day.
They never could find anything out, like we said.
And for about 30 years, they just kind of left it there.
And it was in the late 1960s when neurology researchers that were working on Parkinson's really hit on it, when they developed L-DOPA or levodopa, which is a substitute for dopamine, which is the missing neurotransmitter and Parkinson's disease.
And it was released in 1967, and it brought akinetic Parkinson's disease patients back to life.
And if you've seen the movie Awakenings, that's basically a big storyline.
That's where it picks up is when Oliver Sacks scores some L-DOPA.
He did.
Yeah.
Off a guy selling it on the corner below Beth Abraham Hospital.
Exactly.
Yeah.
So he finally starts with Leonard Lowe, who's Robert De Niro, not the patient's real name, obviously.
But there's just this amazing transformation where, all of a sudden, these people again, who are these frozen statue, like people and have been for decades of their lives, suddenly like are like aware and talking, and like focusing their attention on you.
And one guy's playing the piano and they're like going out on field trips now.
It's like they were just completely brought out of it.
And that supposedly was very much the case with people with actual Parkinson's disease.
Like they responded beautifully to L-DOPA.
For some of them, it basically meant you can't take L-DOPA anymore.
And incredibly sadly like one of the most sad things I can think of they were left to just go back to the frozen statue state again.
And don't forget... there is a great level of consciousness within them when they're in this state.
So they came out of that state in which they were conscious, came to full consciousness and full interactivity, and maybe even left the hospital on a field trip and then had to go back to their frozen statue state again, conscious of this whole experience.
Yeah, very heartbreaking to see in that movie.
There was one case of a woman who, is this the Rose of which you spoke of to me privately?
Yes.
Yeah, that was Rose.
And then Lucy was her name in the movie for some reason.
OK well, this woman, just one of the cases of Oliver Sacks she, she came out of it and she basically described like being aware of everything that was happening for decades and understanding what was happening, but just not feeling a connection to it.
Like there was this weird disconnect there.
Um she, she knew about pearl harbor.
She described knowing about the assassination of kennedy uh, john f that is and she said that it just didn't seem real.
She said nothing has seemed real since 1926 when i got the encephalitis and came to a stop.
I know i'm 64 now and this is 1969 and that i'm an elderly woman in a bizarre situation in a chronic hospital, but i feel like i'm 21 and i feel like it's 1926.
Yeah Man, can you imagine?
Yeah, and very sadly she was one of the ones who did not have.
Her symptoms with L-DOPA were too extreme to continue on taking L-DOPA.
Yeah.
And some people you know came out and were just overjoyed and elated with this kind of thing obviously.
And some people came out and obviously you could also see had a very hard time with lost decades.
It could not have been an easy thing to accept either way.
The movie that there is good news.
There is a bit of a silver lining, because the movie does not cover the fact that that after this a lot of the patients finally regulated with the L-DOPA and were able to leave at least lead compared to sort of their previous life, a somewhat healthy life, like they weren't in that statuesque locked-in state.
They might not have fully recovered, but they led an okay life.
Right.
Yeah.
And they do mention that at the end.
Oh, really?
In one of those, I guess, epilogues or postscripts where they talk about how they continued on experimenting and some people it kind of worked out with a little bit.
But they don't show it in the movie.
The movie's all sad at the end.
It's so sad.
It is.
Yeah.
Oh, my God.
Just go watch Awakenings again.
I accidentally watched Patch Adams first and I wanted to watch Awakening so bad I still watched it after Patch Adams, after Zoolander, and then I finally watched Awakening.
I was up until like four in the morning today, last night.
I never saw Patch Adams.
Oh, it's not good.
That was sex, too, though, right?
No, it was just Robin Williams, too.
It was no Awakenings, I'll tell you that.
Yeah, I need to check that out.
It's funny, I met a guy named Leonard Lowe one time years ago and the only thing I could think in my head was my name is Leonard Lowe.
Like, I just remember De Niro saying that.
You didn't say that to him?
No, because I figured you know, like our listener Robert Paulson, he's probably tired of those jokes.
I never stop saying that to Robert Paulson.
I can't help myself.
So what about these days?
What do we think about EL, medically speaking?
Well, so one of the things that we did learn that we still don't fully understand, but was something that they recognized with L-DOPA and the study of the patients before they were administered L-DOPA is that while you're in this frozen state, like I said earlier, somebody throws a ball at you or, like you said, somebody sees an emergency they can suddenly move like normal and then they go back to that frozen state afterward.
Right.
They found that it's not just like an emergency, like a ball coming at you or your friend laying on the floor because they fell down, but things like music, human touch, even like obnoxious sounds, like a siren or something, can basically prompt the person to start moving again and like come back out of that frozen catatonia or mutism.
Uh-huh.
And that was one of the things that they found people could do on L-DOPA too.
Like even with the extreme tremors or inability to control the movement of your mouth or eyes.
Those could be tamed by the same thing by stimulating your brain in some other way.
And there was this story of a guy who was a cobbler by trade before he had gotten sick.
Oh, yeah.
And after L-DOPA came along, he asked for like a cobbler's bench and the hospital staff got him one.
And when he was working at his cobbler's bench he was able to like hold like nails in his teeth and like nail the heel of the shoe with these little tiny nails and just work and control the symptoms, because there's something in the brain that was overriding the symptoms.
Yeah.
We have no idea why.
We just know that that was part of this whole thing.
There's some way that these problematic symptoms can be overridden by some other region of the brain taking importance or precedence over that, which is just bizarre.
Like from start to finish, this is one of the most bizarre diseases in history.
Yeah, yeah, for sure.
Did you also watch Tremors by accident?
No, that would have been very pleasant.
That's one of my favorite movies.
All of a sudden the sun's coming up and you still haven't seen Awakenings.
So getting back to the modern perspectives and what we think medically these days, in the last 75 years, like I said, it completely went away.
They kind of don't know.
In the last 75 years, there's only been about 80 case reports where it looks like it might be EL.
They call it like an EL-like presentation.
You know the hypersomnolence, maybe ocular paralysis, maybe some of those neuropsychiatric symptoms.
But they're really not sure because you know, the cases are pretty varied and the symptoms are pretty varied.
And, again, you know, all they have is sort of these case studies from before.
They never landed on anything, so it's hard to tell if this is still going on at all or not.
There's no, like, effective treatment.
You know, they still use L-DOPA, I think, right?
Yeah.
Isn't that still on the scene?
Mm-hmm.
Yeah.
So for the tremors and rigidity and stuff like that, sometimes ECT for if you have like pretty extreme psychiatric symptoms.
But for Von Economo's work, he got he never won, but he was nominated three times for a Nobel Prize.
Pretty good.
Yeah, for sure.
And remember, he also originally suspected that it was some sort of infection.
Yeah.
He thought Spanish flu wasn't Spanish flu.
But they do think that it's probable now that it is the result of an autoimmune disorder triggered by an infection.
So what that would amount to is that you are infected by maybe it is strep, maybe it is herpes, maybe it is influenza, we don't know but something that resembles proteins found in different regions of your brain.
It trains your body to attack those proteins in your brain.
So it triggers an autoimmune disorder.
And those proteins are only found in specific regions of the brain, that when you step back and look at what those regions do, they control the symptoms that you see in people with encephalitis lethargica.
Right.
I just sounded like Tim Curry in Rocky Horror Picture Show.
Get up on the... Get on the slab.
Oh, that was good.
I forgot how good your impression is of Dr. Frankenfurter.
Oh, well, you know, I met the man.
He held my cat.
Oh, that's right.
He said your cat was naughty, right?
I said he had dramatic ears.
Oh, okay.
Yeah.
But also naughty.
Yeah, yeah, naughty.
Get on the slab, Laurent.
I got nothing else.
Oh, OK.
Let's see.
I guess I got nothing else either.
That's it.
We don't we don't know the answer to all of this.
And I don't know when we ever will.
But it's just.
It's so fascinating that you have to stop and remind yourself like this actually happened to people.
And then you realize how terrifying the whole thing really is.
Yeah.
Well, Chuck said yeah twice within seven seconds, which automatically means oh well no, he derailed it.
You have to say yeah one more time.
Hurry.
Yeah.
Okay, now we're back on to listener mail.
You're going to like this one, Josh, I think.
Hey, guys, this is about the 8-tracks.
I always learn something from you, sometimes unexpectedly, you guys.
In the 8-track short stuff, you talked about cart being short for cartridge and sparked a memory.
I'm from Buffalo, you see, and I used to listen to a radio announcer called Iron Mike Benson.
He famously had what he called, and Jamie says sorry to you specifically, Josh, about this.
Okay.
Where Iron Mike Benson would say that he had the heinous anus fart cart.
And he would use it to play various fart sounds and strategically place them over the top of whatever songs happened to be getting played on the air at the moment.
I always imagined the word cart at the time was referring to like a basket on wheels that contained a bunch of separate tapes.
Yeah.
Of fart sounds.
Now it all makes sense.
It was a tape recording.
But because it was a looped tape with multiple tracks on it, he could cue whatever selection he wanted much quicker than you could with a linear cassette tape.
So it was the analog way to do that sort of thing before a digital soundboard was used and invented.
Thank you for all the useless interest grabbing information.
And useless is in quotes, by the way.
Okay.
That is only useless until you can relate it to something else.
Podcasts have come and gone, but your show is the one I haven't gotten tired of.
And my sister Ashley agrees.
Keep it up, boys.
That is Jamie Lynn Bear.
Awesome.
Thank you, Jamie Lynn.
And thank you to your sister Ashley, who ostensibly listens as well.
And the whole Bear clan.
How about that?
Yeah.
The clan of the cave bear.
I thought that as well.
Yeah.
If you want to be like the clan of the cave bear and write in to let us know how much you like our show and or we triggered some memory in you that helped you put things together, and or whatever else you want to say.
We love that kind of thing.
You can send it to us via email at stuffpodcast at iheartradio.com.
Stuff You Should Know is a production of iHeart Radio.
For more podcasts from iHeart Radio, visit the iHeart Radio app, Apple Podcasts or wherever you listen to your favorite shows.
Living with a rare autoimmune condition comes with challenges but also incredible strength, especially for those living with conditions like myasthenia gravis or MG and chronic inflammatory demyelinating polyneuropathy, otherwise known as CIDP.
Finding empowerment in the community is critical.
Untold Stories Life with a Severe Autoimmune Condition.
A Ruby Studio production in partnership with Argenix explores people discovering strength in the most unexpected places.
Listen to Untold Stories on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
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