Speaker 1: Hi, I'm Aaron Welsh and this is this podcast Will
Speaker 1: Kill You. You are listening to the latest book Club
Speaker 1: episode of the season, a series where we get to
Speaker 1: interview authors about their books covering fascinating and important topics
Speaker 1: in science and medicine. If if this is your first
Speaker 1: time tuning in this season, welcome, thanks for joining us,
Speaker 1: and also be prepared to make room on your bookshelf
Speaker 1: and to read list. Last time we did this series,
Speaker 1: we just sort of released the episodes without giving you
Speaker 1: an opportunity to read beforehand, and this season, we decided,
Speaker 1: in the spirit of real life book clubs, to give
Speaker 1: those of you who want it a sneak peek of
Speaker 1: the books that we'll be chatting about this season. So
Speaker 1: if you are one of those wanting to read along
Speaker 1: with us, head over to our website This Podcast Will
Speaker 1: Kill You dot com, where you can find a link
Speaker 1: under extras to our bookshop dot Org affiliate page, which
Speaker 1: has our reading lists, including our book club list featuring
Speaker 1: all of the books we covered last season as well
Speaker 1: as the ones we'll be covering this season. It's a
Speaker 1: pretty incredible list, if I do say so myself, and
Speaker 1: I really can't wait to share all of these interviews
Speaker 1: with you all. I'm especially thrilled for today's conversation with
Speaker 1: doctor Sarah Manning Peskin, who is an assistant professor of
Speaker 1: Clinical Neurology at the University of Pennsylvania and author of
Speaker 1: A Molecule Away from Madness, Tales of the Hijacked Brain.
Speaker 1: In this captivating and heartrending book, doctor Peskin takes readers
Speaker 1: through stories of the brain gone awry, exploring the histories
Speaker 1: behind some of these neurological illnesses, and defintely explaining some
Speaker 1: incredibly complex concepts that frame our limited understanding of how
Speaker 1: the brain actually works. I want to ask you all
Speaker 1: to take a second to consider the human brain. What
Speaker 1: are you doing in this very moment besides listening to
Speaker 1: the podcast. Maybe you're cooking dinner. Maybe you're out walking
Speaker 1: your dog, maybe you're crocheting, Maybe you're driving home from work,
Speaker 1: or maybe you're just chilling on the couch. What did
Speaker 1: you do today? Took a shower and got ready for work,
Speaker 1: scrolled through Instagram memes for probably longer than you should have. Guilty,
Speaker 1: wrote a less emails, watch some reality TV? Also guilty.
Speaker 1: How do you feel exhausted? Content anxious, excited, curious, depressed.
Speaker 1: We are capable of doing so much and doing it
Speaker 1: all at the same time, of feeling so much, of
Speaker 1: creating and imagining, of thinking and overthinking, of holding a
Speaker 1: million different emotions, and to do lists and memories inside
Speaker 1: of ourselves, all while doing something as mundane as cooking dinner.
Speaker 1: And it's our brains, of course, that allow us to
Speaker 1: do this miraculous multitasking. I think it's easy for many
Speaker 1: of us to take our brains for granted, and maybe
Speaker 1: some of that comes from the expectation that every morning
Speaker 1: when we wake up, we assume our brains will be
Speaker 1: there just as they were yesterday, maybe a bit groggy,
Speaker 1: maybe in need of some caffeine, but ready to help
Speaker 1: us take on the day. But what happens when our
Speaker 1: brains don't findunction in the capacity we expect them to.
Speaker 1: What happens when our brains betray us. I don't think
Speaker 1: we always appreciate just how close our brains are to
Speaker 1: the edge, how something so small and seemingly insignificant as
Speaker 1: a stray protein, for instance, can profoundly disrupt everything about
Speaker 1: how our brain works. In a molecule away from madness,
Speaker 1: Doctor Peskin shares stories that reveal the vulnerabilities in our brains,
Speaker 1: using each story to teach readers what we know about
Speaker 1: the inner workings of our brains, to remind us how
Speaker 1: many mysteries remain, and to convey that with every story told,
Speaker 1: with every molecule or protein examined, people remain at the center.
Speaker 1: I really loved A Molecule Away from Madness, not just
Speaker 1: for the fascinating histories or thoughtful examinations of complex neurological concepts,
Speaker 1: but also for the way that doctor Peskin centers patients
Speaker 1: in the narratives of these illnesses, bringing so much compassion
Speaker 1: and empathy to a field where it can be too
Speaker 1: easy to lose sight of the whole person when your
Speaker 1: focus is on an individual protein. I am really excited
Speaker 1: to share my conversation with doctor Peskin with you all,
Speaker 1: so let's just get right into it. Sarah, thank you
Speaker 1: so very much for joining me today. I absolutely loved
Speaker 1: your book, A Molecule Away from Madness Tales from the
Speaker 1: Hijacked Brain, and I thought you beautifully blended clear and
Speaker 1: accessible medical information with such a strong sense of humanity
Speaker 1: and empathy, and it was such a great piece of
Speaker 1: scientific storytelling. And I know that you've often been compared
Speaker 1: to Oliver Sex, but hopefully you won't mind hearing that
Speaker 1: comparison one more time, because I really, yeah, I just
Speaker 1: I thought it was so amazing and I've been telling
Speaker 1: everyone I know about it.
Speaker 2: Oh, thank you so much. I was so excited to
Speaker 2: be on.
Speaker 1: So I wanted to start with, you know, asking you
Speaker 1: how you got this idea to write this book. What
Speaker 1: when did you decide I want to write a book,
Speaker 1: And when did you decide I want to write this book,
Speaker 1: and what was your process like?
Speaker 2: So I started. I came to writing pretty late. Initially
Speaker 2: I was going to become a scientist and I wanted
Speaker 2: to like have a lab. And then I actually I
Speaker 2: started an MDPHD combined program. I did like a year
Speaker 2: and a half of the PhD and was like, oh no,
Speaker 2: this is not right, this isn't the right fit, and
Speaker 2: so I quit the PhD program and I finished medical
Speaker 2: school and I was an intern and we had to
Speaker 2: do two months of night shift, and there were some
Speaker 2: nights that were wild and some nights where it's like
Speaker 2: nothing much happens and it's a little bit lonely. And
Speaker 2: so I started writing some memoir stuff, and then I
Speaker 2: essentially realized, like, my life is not that interesting, No
Speaker 2: one really wants to read about my life that much.
Speaker 2: But my work is fascinating and the patients I see
Speaker 2: are amazing, and the family dynamics that you witness are
Speaker 2: incredibly intricate and emotionally moving, and that stuff is interesting.
Speaker 2: And so then I sort of started to think about,
Speaker 2: you know, what are the most interesting stories. And the
Speaker 2: way that someone actually put it to the in terms
Speaker 2: of how you think about what you want to do
Speaker 2: in medicine, is when you open the clinic door, like
Speaker 2: who do you want to see on the exam table?
Speaker 2: And that's how I sort of started to shape the
Speaker 2: book itself, and I initially wrote. Initially the idea was
Speaker 2: to do sort of the traditional thing of like, oh,
Speaker 2: this patient shows up and they have these curious symptoms
Speaker 2: and then aha, this is the diagnosis and here's how
Speaker 2: the disease works, and you know, that's your package. But
Speaker 2: the more I wrote about it, I realized the actually,
Speaker 2: the more important thing is actually the history of the disease,
Speaker 2: because it's learning about a disease itself, and the mechanics
Speaker 2: is so dry, but learning about how we discovered the
Speaker 2: disease and what kinds of sort of wacky and outlandish
Speaker 2: characters were involved. That's actually exciting. The narrative part is
Speaker 2: what's exciting.
Speaker 1: Oh yeah, absolutely, I mean that's our bread and butter
Speaker 1: here on the podcast mine especially. I love medical history
Speaker 1: and sort of getting into that step one, step two,
Speaker 1: how do all the pieces fit together? So of course
Speaker 1: that's another reason why I loved your book. So who
Speaker 1: did you want to see on the exam table? Like
Speaker 1: how did you end up choosing neurology as your specialty.
Speaker 2: I ended up realizing that I thought the most interesting
Speaker 2: diseases were ones that change people's identities. And I think
Speaker 2: like we all sort of think about like, look, if
Speaker 2: I broke my leg, I would still be the same person.
Speaker 2: Or you know, I may go through this bad relationship,
Speaker 2: but I'll come out and you know, I'm still me
Speaker 2: and I'm learning things and I'm evolving. And yet the
Speaker 2: are these select diseases where there's a you know, there's
Speaker 2: a molecular problem and it actually sort of oh or
Speaker 2: hauls your identity and it actually makes you realize that
Speaker 2: the essence of what you think is yourself is actually
Speaker 2: not as protected as you think. And those are these
Speaker 2: is that I found to be sort of most fascinating,
Speaker 2: both in terms of the science of them, but also
Speaker 2: in terms of the social environment. So you know, what
Speaker 2: do you do when your partner suddenly is incredibly disinhibited
Speaker 2: and going up to strangers and having affairs. And it's
Speaker 2: not a sort of a moral failing, it's a molecular problem.
Speaker 1: Let's take a quick break, and when we get back,
Speaker 1: there's still so much to discuss. Welcome back everyone. I've
Speaker 1: been chatting with doctor Sarah Manning Peskin about her book
Speaker 1: A Molecule Away from Madness, Tales of the Hijacked Brain.
Speaker 1: Let's get back into things. And you get into a
Speaker 1: lot of this in your book, right, And there are
Speaker 1: so many different ways that the brain can change suddenly
Speaker 1: and change who you are, or there can be just
Speaker 1: like the tiniest little switch that flips. And so how
Speaker 1: did you decide which diseases and also which personal stories
Speaker 1: that you wanted to include in your book?
Speaker 2: I tried to think of a structure of like, what
Speaker 2: are the types of diseases that actually cause this type
Speaker 2: of thing? And there's not that many different categories. I
Speaker 2: basically described a sort of divided it into mutants, which
Speaker 2: are DNA mutations or DNA changes, rebels, which are problems
Speaker 2: with proteins. So if you think about DNAs, like the
Speaker 2: biggest molecule that we have in our body, proteins are
Speaker 2: pretty big, and proteins basically carry out They're the kind
Speaker 2: of the work horses, that's what really keeps ourselves alive.
Speaker 2: The DNA is really, for the most part, just a
Speaker 2: sort of instruction book. It's proteins that really do the work.
Speaker 2: And then there are small molecules. So there's things that
Speaker 2: are smaller than DNA, smaller than proteins, and they either
Speaker 2: cause a problem by being present. I called those invaders,
Speaker 2: or they have a cause a problem by being absent
Speaker 2: or not being there in enough quantities, and I called
Speaker 2: those evads. And a lot of the diseases that have
Speaker 2: a single molecular problem, and most of them fit into
Speaker 2: one of those categories.
Speaker 1: In terms of the personal stories, like are these all
Speaker 1: patients that you personally have treated or how yeah, how
Speaker 1: did that aspect come into play?
Speaker 2: So then, so only two of the patients are people
Speaker 2: that I treated, and when I interviewed them, they weren't
Speaker 2: under my care anymore, which make it also makes it
Speaker 2: easier so to think about being confident that asking them,
Speaker 2: you know, if I can interview them, isn't you know,
Speaker 2: causing them to worry that their care might suffer if
Speaker 2: they say no. But no. I essentially wrote down the
Speaker 2: different diseases and then I reached out to specialists of
Speaker 2: different feels and said, you know, do you have enough
Speaker 2: patients who you think might be interested? And it actually
Speaker 2: turned out when I went to interview patients it was
Speaker 2: I think it's actually more meaningful for people to be
Speaker 2: interviewed than I realized, because you when we develop diseases,
Speaker 2: you know, you go to a doctor and you say,
Speaker 2: like look up and feeling X y Z, and the
Speaker 2: doctor says, we want to get some tests, and then
Speaker 2: you come back and you get a little more information,
Speaker 2: and then maybe your symptoms change or you get more tests,
Speaker 2: and there's sort of an evolution of getting a diagnosis,
Speaker 2: and then the disease itself can evolve over time. And
Speaker 2: it's really uncommon for people to be able to sit
Speaker 2: down and say, you know, what has this entire road been, like,
Speaker 2: you know, what's the last six years of my life
Speaker 2: been like from the beginning changes to where I am now,
Speaker 2: and it's actually fulfilling for people to be able to
Speaker 2: actually walk through that with someone in sort of in
Speaker 2: slow motion. So I was actually sort of surprised that
Speaker 2: after interviews people be like, oh, that was actually that
Speaker 2: was a really wonderful experience. And I was sort of thinking, oh,
Speaker 2: my gosh, thank you so much for giving me so
Speaker 2: many hours of your time. But actually it was nice.
Speaker 2: It was sort of a mutually beneficial thing.
Speaker 1: Yeah, I can imagine it would be really sort of
Speaker 1: like cathartic and difficult, but also I think that the
Speaker 1: personal stories just adds so much because it kind of
Speaker 1: places it in a human context. It grounds these these diseases,
Speaker 1: these things, and you're like, these are people who are
Speaker 1: experiencing them. This is their story. It's not just lab charts,
Speaker 1: it's not just these results. It's not just this you know,
Speaker 1: list of symptoms. And so yeah, I felt like that
Speaker 1: was really impactful. Were there any stories that you didn't
Speaker 1: end up including, or any diseases that you initially thought
Speaker 1: that you were going to include as part of the
Speaker 1: book but didn't end up making the final cut.
Speaker 2: There were some that got cut there was I wanted
Speaker 2: to include a chapter around manganese poisoning because it can
Speaker 2: cause parkinsonism, so it can cause people to have movement changes.
Speaker 2: But it turned out it's really mired in legal issues
Speaker 2: because a lot of it was workplace exposure, and so
Speaker 2: I ended up I was like reaching out to lawyers
Speaker 2: saying like, are your clients interested in talking? And then
Speaker 2: it was sort of like, I think that I'm entering
Speaker 2: into a realm that I shouldn't go into, and so
Speaker 2: so that one got even though it's a fascinating story.
Speaker 2: And then there were some people. There's two people who
Speaker 2: are interviewed who were, you know, wonderful people and wonderful stories.
Speaker 2: And ultimately, when I finished with the structure of the book,
Speaker 2: they sort of felt kind of extraneous in terms of
Speaker 2: the stories themselves, but the people were wonderful, and so
Speaker 2: in the back of my head, I'm always like, oh,
Speaker 2: I'm some point I have to write up those stories.
Speaker 1: Yeah, next book. So when you're not writing, what are
Speaker 1: you doing on the day to day? I mean, I
Speaker 1: know you're probably still writing, but yeah, what do you
Speaker 1: do besides being an author?
Speaker 2: Yes? So I mean I watch TV, I do the
Speaker 2: normal things. But you know, I'm a cognitive neurologist, so
Speaker 2: two days a week I see patients, and it's it's
Speaker 2: mostly patients who are coming in and saying, you know,
Speaker 2: do I have dementia? What's going to happen in the future,
Speaker 2: And most of what we see is sort of atypical cases.
Speaker 2: So often it's people who are younger or people who
Speaker 2: have unusual symptoms. So someone who comes in and says,
Speaker 2: you know, look, I've been seeing people at the end
Speaker 2: of my bed and I know they're not there, but
Speaker 2: they really look clear to me, or you know, things
Speaker 2: like we had said fur some you know, my partner
Speaker 2: is acting strangely. He's totally apathetic and he used to
Speaker 2: be so warm, and he went out and bought a
Speaker 2: sports car and didn't tell me, or you know, people
Speaker 2: who say, you know, look, I'm having trouble using the
Speaker 2: right side of my body and it's gotten worse and
Speaker 2: worse over time. So these sort of really atypical cases
Speaker 2: where people have language problems, so they come in and
Speaker 2: they say, you know, I used to be a big
Speaker 2: gardener and you know, someone mentioned the word mulch before
Speaker 2: and I couldn't really figure out what it meant. And
Speaker 2: so it's a lot of these atypical sort of conditions
Speaker 2: that people walk around for years and they can tell
Speaker 2: something's up, but they go to neurologists, they go to psychiatrists,
Speaker 2: and they can't get a diagnosis. And so a lot
Speaker 2: of what we do is sort of seeing those cases
Speaker 2: and saying, you know, if you're not alone, this is
Speaker 2: a real disease. It's sort of in your head, but
Speaker 2: not in your head. And so that's what I do,
Speaker 2: you know, much of the time outside of writing.
Speaker 1: So I am a huge fan of medical history, as
Speaker 1: I mentioned, and as everyone who listens to the podcast knows,
Speaker 1: it's what I talk about. And so I really enjoyed
Speaker 1: all of the historical components that you put in your book,
Speaker 1: especially the story of Alzheimer and how Alzheimer's disease got
Speaker 1: its name, which of course involves this instance of Alzheimer
Speaker 1: himself standing up and presenting what he found at a
Speaker 1: scientific meeting where he was met with absolute silence. So
Speaker 1: can you place his findings in the context of dementia
Speaker 1: research at that time and maybe kind of speculate on
Speaker 1: why no one really seemed to care all that much
Speaker 1: about or recognize immediately the importance of his presentation.
Speaker 2: Yeah, so this story is sort of fascinating. So Alzheimer business,
Speaker 2: he was a sort of a very social guy, very smart.
Speaker 2: He'd gone to this top school and then he did
Speaker 2: a PhD on the cellular life of earwax and he'd
Speaker 2: gotten like a citation for disturbing the piece. So he
Speaker 2: was sort of a work hard, play hard kind of guy.
Speaker 2: And he goes into work when morning at the asylum
Speaker 2: for the insane and epileptic it was called in Frankfurt,
Speaker 2: and he meets this woman, August Dieter, who was a
Speaker 2: housewife and she's in her early fifties. She was fifty
Speaker 2: one when he met her, but in her forties even
Speaker 2: she started having difficulty. She would forget things in recipes,
Speaker 2: she was getting confused where she was going around the house.
Speaker 2: She became very suspicious that her husband was having an
Speaker 2: affair with a neighbor, even though there was no evidence,
Speaker 2: and her husband had taken her to the doctor and
Speaker 2: the doctor basically said, pack her clothes and drop her
Speaker 2: off with the asylum, and so that's what he did
Speaker 2: and she never got out, but he saw her the
Speaker 2: next day and he very quickly realized her case was unusual.
Speaker 2: And what he realized is that she was had a
Speaker 2: very a horrible short term memory. So he would come
Speaker 2: and he would show her a bunch of objects, and
Speaker 2: she could name them. She could do math, she could
Speaker 2: describe things like the color of soot, but as soon
Speaker 2: as he would take the objects away, she would have
Speaker 2: no idea that he had ever shown them to her.
Speaker 2: Or if he asked her to write her name, she
Speaker 2: would write, she wrote missus, and then she couldn't write
Speaker 2: the rest of her name. She sort of forgot the
Speaker 2: task or forgot how to do it. And he realizes
Speaker 2: the case is unusual, and so he treats her for
Speaker 2: all over but a year, and then he actually Alzheimer's
Speaker 2: own wife actually dies a very young and he's left
Speaker 2: with three kids, and he ends up moving to another city.
Speaker 2: But he basically calls DIBs on her brain, which was
Speaker 2: something you could do in that time. And so everyone
Speaker 2: knows that this asylum that when you know, when this
Speaker 2: woman dies, it's going to her brain's going to go
Speaker 2: to Alzheimer. And and sure enough, a few years later
Speaker 2: she passes away and an intern from the hospital and
Speaker 2: Frankfurt calls him up and is like, you know, do
Speaker 2: you want the brain still? And he's like, send it over,
Speaker 2: And so they fix the brain and formaldehyde and they
Speaker 2: send the whole brain and her entire medical record to
Speaker 2: Alzheimer's at this other hospital. There's no consenting there, you know,
Speaker 2: it's a totally different time. And he looks at her
Speaker 2: brain under a microscope and he sets built up of
Speaker 2: these two structures. One is what we call plaques, which
Speaker 2: basically look like a spot of spray paint in the brain.
Speaker 2: That obviously is microscopic, and then the other is called
Speaker 2: we call him tangles now, and they basically like spaghetti
Speaker 2: inside of neurons. And people had seen the structures before,
Speaker 2: but they had seen it essentially an older people where
Speaker 2: they thought the structures didn't really mean anything. And Alzheimer's
Speaker 2: big contribution was finding this woman and realizing she had
Speaker 2: an enormous, enormous burden of these plaques and tangles, and
Speaker 2: so what he did that was so sort of partly
Speaker 2: he was so good at microscopy and he was such
Speaker 2: an expert in the field, but also he was very
Speaker 2: quick to say, is this a different disease, and that
Speaker 2: was the key. It's that he said, you know, have
Speaker 2: I actually discovered something new? And so he goes to
Speaker 2: this conference and he presents his data, and just as
Speaker 2: you said, so he basically talks about the case. He
Speaker 2: shows pictures and slides, and at the end there's like
Speaker 2: total silence. The moderator basically says, well, it seems there's
Speaker 2: no desire for discussion, and please take a seat. And
Speaker 2: then and later in the day, actually the talk that
Speaker 2: garnered the most interest is to talk about excessive masturbation.
Speaker 2: That was the high light of the meeting, of course. Yeah,
Speaker 2: and so it's so, yeah, you were sort of left
Speaker 2: with this thing of oh my gosh, this is one
Speaker 2: of the most you know, it's one of the deadliest
Speaker 2: diseases in the world, it's one of the top causes
Speaker 2: of death, and yet at its discovery, nobody really sensed
Speaker 2: that it was important. And I think there's a few reasons,
Speaker 2: but I think a big thing is that he presented
Speaker 2: a single case. Yeah, and so there's you know, there's
Speaker 2: thousands of case reports that come out every day and
Speaker 2: it's hard to sift through, you know, which ones are
Speaker 2: actually meaningful, and you can sort of think about what
Speaker 2: about the next case of COVID. People probably didn't realize
Speaker 2: that that was anything unusual. It's only when it becomes
Speaker 2: more widespread that you realize, oh, in retrospect, that was
Speaker 2: a big deal. And so I think part of that
Speaker 2: was that it was it's a single case. And part
Speaker 2: of it is also that in that time it's harder
Speaker 2: to disseminate scientific information. So you can imagine anyone who's
Speaker 2: not at that meeting is not going to hear that.
Speaker 2: So it's not the same as today, where you publish
Speaker 2: a paper and then with a click of a button,
Speaker 2: the entire world has access to it. So I think
Speaker 2: that's another part of it. And part of it also
Speaker 2: is that he wasn't as far in his career as
Speaker 2: he eventually would get. So the way that Alzheimer's disease,
Speaker 2: the way the term eventually gets coined is his mentor
Speaker 2: actually publishes a revision of a textbook and mentions the
Speaker 2: case and mentions Alzheimer's disease, and so he basically is
Speaker 2: a little bit of who you know am, So that
Speaker 2: I think that those were sort of I think some
Speaker 2: of the main reasons why I didn't really get recognition
Speaker 2: at the beginning.
Speaker 1: Let's take a quick break here. We'll be back in
Speaker 1: just a few Welcome back, everyone, I'm here chatting with
Speaker 1: doctor Sarah Manning Peskin about her book, A Molecule Away
Speaker 1: from Madness. Let's get into some more questions. It's such
Speaker 1: a fascinating story. And another one that I found so
Speaker 1: interesting and I had no idea about was Abraham Lincoln
Speaker 1: and how he maybe was taking this medication that possibly
Speaker 1: was altering his personality. Can you share a bit about how,
Speaker 1: first of all, how you came across that story, and
Speaker 1: then what that story is.
Speaker 2: Yeah, so I was looking sort of at I wanted
Speaker 2: to do at least one chapter about, you know, toxins,
Speaker 2: and people have written books about toxins, so I sort
Speaker 2: of thought, you know, how do you choose which one
Speaker 2: to write about? Either it's a really, really unusual toxin
Speaker 2: or it's a sort of unusually salient case. And I figured,
Speaker 2: you know, everyone's heard of Abraham Lincoln. It's an interesting case.
Speaker 2: And also sort of the idea of, you know, how
Speaker 2: do you speculate on the medical issues of historical figures
Speaker 2: who have died where you can never really prove it.
Speaker 2: So it brings up all sorts of questions, and the
Speaker 2: guy who sort of unnersed the air treated the theory
Speaker 2: is a fascinating guy who's a he's an infectious disease
Speaker 2: doctor and who actually essentially pioneered oral rehydration therapy, so
Speaker 2: he's credited with saving thousands and thousands of people. But
Speaker 2: he's also a medical historian on the side. And he
Speaker 2: was reading Gorvidelle's book Lincoln, and he saw that it
Speaker 2: mentioned something about Lincoln taking a substance called blue mass,
Speaker 2: and so he went back to the primary literature and
Speaker 2: realized there's all these references Lincoln. There's no quote from
Speaker 2: Lincoln himself, but there are quotes from his closest confidants,
Speaker 2: basically saying Lincoln used to take blue mass, and then
Speaker 2: after he got elected, he realized it made him cross
Speaker 2: and so he stopped taking it. And it's kind of
Speaker 2: amazing to think about these incredible political figures having medication
Speaker 2: side effects and sort of thinking about what if he
Speaker 2: hadn't realized, you know, what would have happened then? And
Speaker 2: then is sort of the guy who created the theory
Speaker 2: in Norwo Herschard. He essentially went back and said, you know, look,
Speaker 2: there are actually these cases of Lincoln being really sort
Speaker 2: of actually sort of unhinged, and not that you know,
Speaker 2: we think of Lincoln as basically his emotions are basically
Speaker 2: like the statue. He's sort of sitting and thinking, and
Speaker 2: like we think of it, that's what he was always like.
Speaker 2: He was calm and measured, and yet there are these
Speaker 2: cases of him attacking a judge in the middle of
Speaker 2: a court case. In one of the Lincoln Douglas debates,
Speaker 2: he almost strangled a guy on stage. And so the
Speaker 2: question is you know where those medication side effects, and
Speaker 2: the foo line is we'll never be able to prove it.
Speaker 2: You have a thought is if he stopped using blue mass,
Speaker 2: which contains mercury, I should have said that that was
Speaker 2: the main toxic component. But if he stopped using mercury
Speaker 2: after right after he got elected, by the time he
Speaker 2: was assassinated, there wouldn't be any traces of it in
Speaker 2: his body. So there's no way to figure it out.
Speaker 1: On the podcast, we are pretty used to dealing with
Speaker 1: the gross and the gory and the weird, but even
Speaker 1: I was taken aback by the filth parties. The quote
Speaker 1: unquote filth parties held by Joseph Goldberger, So what was
Speaker 1: the deal with these parties.
Speaker 2: Yeah, it was it was from a time when it
Speaker 2: was very common to test things on yourself, and that's
Speaker 2: how scientists did their it did their work. So there
Speaker 2: was this disease called pilagra, which it caused diarrhea, It
Speaker 2: caused people to have a rash and sun exposed areas,
Speaker 2: so your face, your hands, you know, the top of
Speaker 2: your deck, and it caused a dementia and cognitive symptoms.
Speaker 2: And for a long time, people thought it just didn't
Speaker 2: exist in America, and then in the early nineteen hundreds
Speaker 2: it started cropping up in the southeast and it basically
Speaker 2: became this epidemic. It was, it became enormously common. People
Speaker 2: became extremely scared of it. It was often deadly, and
Speaker 2: so it was affecting primarily impoverished people. So it was
Speaker 2: affecting new orphans, it was affecting prisoners, it was affecting performers,
Speaker 2: and so at the beginning it didn't get that much attention.
Speaker 2: But then it started spreading and essentially you started getting
Speaker 2: national headlines saying that people are scared of this, you
Speaker 2: know disease. You people are scared of this killer, and
Speaker 2: so the predominant at the time was that either it
Speaker 2: was caused by a toxin and spoiled corn, or the
Speaker 2: theory that gained traction was that it was caused by
Speaker 2: a infection transmitted by flies. And the reason why that
Speaker 2: gained traction there was literally zero evidence. So there's zero
Speaker 2: evidence to show the guy who the guy who thought
Speaker 2: of the theory eventually went on to argue that cancer
Speaker 2: was caused by cockroaches. So there's zero proof that this
Speaker 2: is correct, but everyone wants to believe it because then
Speaker 2: you can basically say, you know, look, the diseases, it's
Speaker 2: their fault. It's the people who suffer from it. They're
Speaker 2: not clean and that's why they get this disease, and
Speaker 2: so we don't have any responsibility. And so even though
Speaker 2: so that theory starts, you know, taking hold, but there's
Speaker 2: no proof, and the disease is spreading, so people are scared,
Speaker 2: and so the Surgeon General calls on this guy, Joseph Goldberger.
Speaker 2: And Goldberger was a public health officer who was no
Speaker 2: stranger to contracting the diseases he was studying. So he'd
Speaker 2: gotten typhus, he'd gotten typhoid, and he'd actually exposed himself
Speaker 2: to skathies to prove about to try to like track
Speaker 2: that a epidetic was coming through mattresses. So he like
Speaker 2: very much is sort of roll your hands up and
Speaker 2: get it, roll your rest leaves up and get into
Speaker 2: it kind of guy. And he very quickly realized, like, look,
Speaker 2: this is not caused by an infection. It's caused by
Speaker 2: something in the diet. But nobody would believe him because
Speaker 2: the optics are totally different. Now if it's a and
Speaker 2: he actually really it's a dietary deficiency, it's not a
Speaker 2: toxin in the diet. It's that the diets of these
Speaker 2: people are missing a nutrient. And that's very problematic because
Speaker 2: now instead of saying, you know that these people are
Speaker 2: dirty and it's their fault, you're actually saying our country
Speaker 2: is literally starving its own people and now they're dying
Speaker 2: because of it. So the optics are totally different, and
Speaker 2: it's also more expensive to fix because now suddenly the
Speaker 2: solution is now you have to feed people. And so
Speaker 2: nobody really wants to believe him, and so he basically says,
Speaker 2: you know, like I'm going to prove to you that
Speaker 2: this is not an infectious disease, and so he starts
Speaker 2: off with him in a colleague and they take a
Speaker 2: sample of blood from a patient with LAGRA and they
Speaker 2: injected into their own shoulders and he talks about, how,
Speaker 2: you know, like we had some sore shoulders, but other
Speaker 2: than that, it was okay. And then he has more
Speaker 2: colleagues who are confident in him, and so they start
Speaker 2: getting a little bit more gruesome with the experiment. So
Speaker 2: they scrape the scales off of patients rashes, and they
Speaker 2: mix it in with their stool and their urine, and
Speaker 2: they actually swallow the pills. And actually even his wife
Speaker 2: wants to participate. They've had this sort of fraught marriage
Speaker 2: because he's always running off to these different states and
Speaker 2: other countries to get expose himself to these deadly diseases,
Speaker 2: and she's sort of like stuck at home managing all
Speaker 2: the children. But she decides she wants to participate, so
Speaker 2: she goes down to see him, and he doesn't let
Speaker 2: her eat stool or you know, or the urine. He
Speaker 2: but he does the blood one and he makes sure
Speaker 2: to take it from a female patient unless he should
Speaker 2: take you know, blood from a male patient and give
Speaker 2: it to his wife, but so she does participate also
Speaker 2: where they take an injection from a they take blood
Speaker 2: from a a woman with pologer and he injects it
Speaker 2: into his wife's abdomen. And at the end of it,
Speaker 2: they wait six months and he writes up the paper
Speaker 2: that basically says, you know, considering the amount of filth
Speaker 2: that we took in, it's pretty amazing that none of
Speaker 2: us got pillagra. And that's sort of the punchline. So
Speaker 2: we tried as hard as we could to get the
Speaker 2: disease and we still couldn't catch it. Yeah, And eventually
Speaker 2: he goes on actually to do this incredible work. Yeah,
Speaker 2: when he actually gets so close to getting to the
Speaker 2: answer of what nutrient is missing in pologra, and he
Speaker 2: figures out it's a B vitamin and then he dies
Speaker 2: pretty quickly, and he was nominated for a Nobel Prize
Speaker 2: multiple times that he dies before he ever gets one.
Speaker 2: And then other researchers sort of finish it and end
Speaker 2: up figuring out that it's a deficiency in nisin, which
Speaker 2: actually was available on the shelf the whole time in
Speaker 2: the office of the guy who coined the term vitamin.
Speaker 2: But he just didn't realize that that was the solution,
Speaker 2: so it actually was an incredibly cheap disease to treat.
Speaker 2: They just didn't know, so all these people, thousands and
Speaker 2: thousands of people died in the meantime.
Speaker 1: One of the themes that we frequently run into on
Speaker 1: the podcast is the shift that occurred in the late
Speaker 1: eighteen hundreds when medicine starts to become less personalized, focusing
Speaker 1: more on the disease, treating the disease rather than treating
Speaker 1: the patient. And it seems like that was largely due
Speaker 1: to things like, you know, germ theory being like, well,
Speaker 1: we can solve it this way, or it's this that's
Speaker 1: making you sick. The problem is external, not internal, as
Speaker 1: well as technological advancements in like medical measuring devices where
Speaker 1: we can translate your disease, your symptoms into numbers essentially.
Speaker 1: But it seems like these close personal relationships between August
Speaker 1: and Alzheimer and Anna and Pick that you talk about
Speaker 1: in your book kind of escaped that depersonalization. Do you
Speaker 1: think that they were unique at the time, or did
Speaker 1: neurology as a field kind of overall escape the depersonalization
Speaker 1: that was happening so broadly in most of medicine.
Speaker 2: So I don't think they were that unique at the time.
Speaker 2: I think so August Eater was that sort of the
Speaker 2: first case of Alzheimer's disease that he witnessed, and then
Speaker 2: Anna Jeronich was this case that Arnold Pick who was
Speaker 2: another researcher at the time and kind of a nemesis
Speaker 2: of Alzheimer's, but that was a case that that he
Speaker 2: wrote about, and they each wrote really extensively about these
Speaker 2: single patients. But I think the reason it's like that
Speaker 2: is just because they were they were the index patients
Speaker 2: of these new diseases. Or in Jern next, she was
Speaker 2: one of the first ten patients that he'd sort of
Speaker 2: seen like that. So I think it's more just that
Speaker 2: these are the seeds of new diseases. And at that
Speaker 2: level it is still personal because they're individual cases. And
Speaker 2: even now case reports are you do still get sort
Speaker 2: of this personal sense of people, even though they're you know,
Speaker 2: we don't include people's names anymore. We don't, you know,
Speaker 2: includes some of the offhand comments that people used years ago.
Speaker 2: But the index cases, I think are always they're always
Speaker 2: still individual cases and if anything, you know, as you said,
Speaker 2: it's a little bit funny now that so many of
Speaker 2: the biggest papers, it's like written by people who have
Speaker 2: never met people with the disease that they're studying, and
Speaker 2: they have to make these incredible contributions to the field,
Speaker 2: but there's actually no account of anyone with the disease.
Speaker 2: It's basically, you know, it starts off saying, you know,
Speaker 2: this is a meta analysis of x number of papers
Speaker 2: and x number of patients, and this disease is characterized
Speaker 2: by a blah and here's the statistics, and you could
Speaker 2: get through the entire paper, you could learn groundbreaking material,
Speaker 2: but literally have no idea what it's like to live
Speaker 2: with the disease.
Speaker 1: Yeah, I think that it's it's an interesting disconnect. And
Speaker 1: do you feel like that's something that in medical school
Speaker 1: or medical training today kind of is a field that
Speaker 1: could be improved upon, or like, how do you integrate
Speaker 1: witnessing these first hand experiences of what the disease is like?
Speaker 1: Is there a gap there that you think could or
Speaker 1: should be addressed.
Speaker 2: So there's a sort of emerging field of narrative medicine
Speaker 2: that's trying to address basically exactly that. If you look
Speaker 2: up most papers, it's all passive. It's sort of all
Speaker 2: passive language. It's essentially like you basically remove yourself from
Speaker 2: the experience. But the place where that's been sort of
Speaker 2: preserved or ideally is the first line place to preserve
Speaker 2: that sort of close, intimate narrative relationship is actually in
Speaker 2: the patient interaction, because really what you're doing when you
Speaker 2: sit down with a patient, what you're doing is actually
Speaker 2: you're trying to get a sense of their narrative. And
Speaker 2: when you write your note, what you're trying to do
Speaker 2: is basically say, look, here's their story, Here's how things
Speaker 2: evolve over time, Here's how they feel, Here's what it's
Speaker 2: like to be them. And you know, when you're telling
Speaker 2: your you know you're attending or whoever else about the story,
Speaker 2: you're trying to lead them to a conclusion. So you
Speaker 2: actually do need a narrative arc. So it actually is
Speaker 2: a very useful tool in medicine. And so part of
Speaker 2: what narrative medicine is trying to do is to say,
Speaker 2: you know, can we treat these patient interviews as intimate
Speaker 2: personal experiences where you actually extract not you know, numbers
Speaker 2: like lab results, but actually you're extracting an experience, and
Speaker 2: then you're trying to encapsulate that experience for someone else.
Speaker 2: You're actually using narrative to formulates, you know, what you've
Speaker 2: heard and to try to communicate to someone else, what
Speaker 2: is this patient's life actually like? Yeah, and that also
Speaker 2: allows you to create a more holistic plan. Yeah, so
Speaker 2: for us, it maybe you know, look, we'd like to
Speaker 2: start this medication, but also you know they're bored during
Speaker 2: the day and they're not engaged, and how can we
Speaker 2: find a way for them to be active during the day.
Speaker 2: So it allows you to think a lot more about
Speaker 2: a person's quality of life than just about whatever numbers
Speaker 2: get thrown up on the board.
Speaker 1: Several of the conditions that you discuss in your book,
Speaker 1: like Huntington's disease or Alzheimer's disease, for instance, are heritable,
Speaker 1: at least in part for the children of those diagnosed
Speaker 1: with these potentially heritable dementias, I feel like that can
Speaker 1: be doubly traumatic, right where you're watching your parents lose
Speaker 1: themselves or your grandparents lose themselves, and knowing that this
Speaker 1: likely awaits you. Can you talk about this experience and
Speaker 1: the complex ways that you've seen people deal with it.
Speaker 2: Yes, this is a This is a big part of
Speaker 2: what we do, partly because we see a lot of
Speaker 2: these atipoical cases. So, the woman who essentially pioneered the
Speaker 2: research that led to finding the gene that causes Huntingdon's disease,
Speaker 2: she was a woman who was highly educated. She'd done
Speaker 2: a Fulbright scholarship, and then her dad called her home
Speaker 2: and said, your mom's Huntingdon's disease and you have a
Speaker 2: fifty percent chance of getting the disease. And she basically
Speaker 2: overhauls her career, ends up focusing. She had taken I
Speaker 2: think either zero or one biology classes in her entire life,
Speaker 2: and she basically starts focusing on trying to find a cure.
Speaker 2: In order to find a cure, you have to find
Speaker 2: the cause. And so eventually she actually pioneers this work
Speaker 2: that leads to our current ability to test people for
Speaker 2: the gene that causes Huntington's disease. So you can now
Speaker 2: tell people who are totally asymptomatic that, look, you have
Speaker 2: this gene orban momorality that will likely cause Huntingdon's disease
Speaker 2: if you live long enough, and even though they have
Speaker 2: no symptoms, she actually never took the test, basically said,
Speaker 2: you know, look, I have a lot more to lose
Speaker 2: by taking the tests than I have to gain. She
Speaker 2: never took the test. She eventually developed symptoms of the disease,
Speaker 2: and now has sort of come in public saying that
Speaker 2: she's developed the disease and her sister didn't. And it's
Speaker 2: sort of this fascinating story. And so much of what
Speaker 2: we I deal with at work actually is diseases where
Speaker 2: you find out there's actually a single gene mutation or
Speaker 2: a single gene change that's causing the disease, and you
Speaker 2: sort of think it's a little bit strange. You know,
Speaker 2: you've had this DNA your whole life, and why is
Speaker 2: it suddenly causing you a problem in your your sixties
Speaker 2: even your seventies. And some of these diseases, you know,
Speaker 2: you can have the same gene change in one person,
Speaker 2: and you know multiple family members, and sometimes they all
Speaker 2: get the disease at the same time, and sometimes they
Speaker 2: get it at vastly different ages, or it doesn't even
Speaker 2: always cause the disease, And so the issues that arise
Speaker 2: are are incredibly emotionally complex. So the biggest thing that
Speaker 2: people think of is you know, do you want to know?
Speaker 2: You know, do you want to know if you have
Speaker 2: a mutation that causes a neurodegenerative you know, a deadly
Speaker 2: progressive disease that we have no cure for, And we
Speaker 2: couldn't tell you exactly when you'll get it. We can
Speaker 2: tell you the chances of getting it, but we can't
Speaker 2: tell you exactly when or that you'll definitely get it.
Speaker 2: And and do you want to know? And there's a
Speaker 2: few things I think about. So one is, you know,
Speaker 2: maybe you want to know because you want to enroll
Speaker 2: in a research study and uh, and maybe they'll be
Speaker 2: you know, you'll get a treating, you'll ever develop the disease.
Speaker 2: One of the big things is you know, do you
Speaker 2: want to know so you can plan? You know, so
Speaker 2: if you knew that you were going to get, you know,
Speaker 2: a nerd degenerate disease, and someone said, you know, look
Speaker 2: it's probably gonna it often starts in your fifties or sixties,
Speaker 2: would you change your career? Would you change your decisions
Speaker 2: about having kids? Would you change how much you travel?
Speaker 2: Would you change how much you spend? And the other
Speaker 2: really sort of most you know, the thing that I
Speaker 2: find most interesting is you also can have kids that
Speaker 2: don't have them meatation. So if you carry a mutation
Speaker 2: and you you don't want to have biological children that
Speaker 2: don't have it, you can do ivfs. Essentially, they take
Speaker 2: egg and sperm, they mix it together, you know, in
Speaker 2: a lab, and then they take the cell sort of
Speaker 2: grow and divide and grow and divide, and after a
Speaker 2: certain amount of time they take away one cell or
Speaker 2: they take I think it's more like four or five cells,
Speaker 2: So they take away a few cells and they look
Speaker 2: at the gene in those cells and they can say, okay,
Speaker 2: this is a normal version or not a normal version,
Speaker 2: and then they basically only use the embryos that have
Speaker 2: normal versions. They put it back in the uterus, you
Speaker 2: grow a kid, then the kid does not have the disease.
Speaker 2: So it's actually we have the technology to literally root
Speaker 2: out the mutations from family lineages, but only if you
Speaker 2: know that you have only if you know it you
Speaker 2: know to look. So it's really it's such a complex issue.
Speaker 2: And ultimately, there are normal people who decide to find out,
Speaker 2: and there are normal people who decide not to find out.
Speaker 2: And even within families, you know there'll be some siblings
Speaker 2: who do testing and some who don't, and it's it's
Speaker 2: one of the most fascinating issues that we deal with.
Speaker 2: The other big issue that comes up is basically, if
Speaker 2: you know, if a grandparent had the disease, a parent
Speaker 2: decides not to find out, but their child decides to
Speaker 2: get tested. If the child has the mutation, then the
Speaker 2: parent now knows. So it actually your people's decisions affect
Speaker 2: other people in the family. So it's just it's sort
Speaker 2: of scientifically fascinating and emotionally so fraught, but also actionable.
Speaker 1: Like with so much else in the history of medicine,
Speaker 1: broad categories of diseases end up being broken down into
Speaker 1: smaller clinical units as we grow to understand more and
Speaker 1: more about their pathologies, Like fever became many different things,
Speaker 1: Hysteria became endometriosis or MS or pcos or so many
Speaker 1: other things, and dementia in some ways was split similarly,
Speaker 1: in what ways do you think that the diseases that
Speaker 1: you talk about in your book or that you encounter
Speaker 1: in your work are still undergoing this type of revision.
Speaker 2: So the diseases, I mean, one of the big diseases
Speaker 2: that I see is front of temporal dementia, and even
Speaker 2: the name for that is like you're a little over
Speaker 2: twenty years old, So it's very much still an active
Speaker 2: field in that area in Partigo. So that's the disease
Speaker 2: where it has a few different variants. So it's been
Speaker 2: in the press a lot because Bruce Willis has now
Speaker 2: come out saying that he has or his family's come
Speaker 2: out saying that he has front or temporal dementia. So
Speaker 2: it's had a lot of coverage lately, and essentially some
Speaker 2: of it. Sometimes it can cause people to have these
Speaker 2: sort of really sort of antisocial behaviors, going up to strangers,
Speaker 2: saying in appropriate things, hypersexuality, eating non food things. Sometimes
Speaker 2: it can cause people to have language problems where they
Speaker 2: lose the connection between words and objects. So you know,
Speaker 2: you were taught when you were a kid that an
Speaker 2: apple is, you know, a green or red thing that's
Speaker 2: crunchy in the middle. But there's nothing inherent about an
Speaker 2: apple that sounds like apple. It's just that sound was
Speaker 2: attached to the word and you lose that connection, or
Speaker 2: some people start have having trouble with the motor programming
Speaker 2: of speech. So when you want to say a word,
Speaker 2: your mouth and your tongue has to move in a
Speaker 2: certain way to say it, and that's a message that
Speaker 2: goes from your brain to the muscles or in your mouth,
Speaker 2: and that connection gets lost. So in that disease, it
Speaker 2: essentially had like it had like ten different names, each
Speaker 2: of which had like the names themselves were like six
Speaker 2: different words put together, and people thought it was like
Speaker 2: multiple diseases, and then they finally figured out, actually it's
Speaker 2: the same disease, and it's sort of this aha moment,
Speaker 2: and then actually they go on and they realize when
Speaker 2: you look at under people's brains under a microscope, it's
Speaker 2: actually not the same disease. So it's sort of had
Speaker 2: this full evolution of like is this one disease? Is
Speaker 2: it multiple diseases? And ultimately we're not very good at
Speaker 2: for Alzheimer's disease. We actually have tests that we can
Speaker 2: do in living people and we can say, you know, look,
Speaker 2: we're essentially almost sure that that's what it is. With
Speaker 2: French of temporal dementia, you know, you can have two
Speaker 2: people who have exactly the same symptoms, their imaging looks similar,
Speaker 2: and yet under a microscope their brains look completely different.
Speaker 2: It's caused by a totally different protein in one person
Speaker 2: compared to another. Yeah, and so a lot of these
Speaker 2: fields are still, you know, very much evolving, and part
Speaker 2: of the issue is that difficulty in making the link
Speaker 2: between symptoms and imaging and testing and what's going on
Speaker 2: under a microscope because you can't access the brain. It's
Speaker 2: not like the lungs where you can take a piece
Speaker 2: out and you look at the molecules the brain. It's
Speaker 2: like we're using all these proxies and that's been you know,
Speaker 2: that's the big barrier.
Speaker 1: Speaking of frontotemporal dementia, in your chapter where you focused
Speaker 1: on that particular condition, you talk about the stigma and
Speaker 1: you mentioned some of these symptoms that are commonly seen
Speaker 1: with frontotemporal dementia and how they're maybe not what we
Speaker 1: typically think of when we think of dementia, and maybe
Speaker 1: that's because that's the way that dementia is portrayed in
Speaker 1: popular media. So there can be more of like a
Speaker 1: stigma maybe with these you know, atypical symptoms or symptoms
Speaker 1: that we persue to be a typical even though they're not.
Speaker 1: So can you talk a little bit about this this
Speaker 1: problem between the disconnect and how dementia is portrayed versus
Speaker 1: the actual like wide variety of ways that it can
Speaker 1: actually look in reality.
Speaker 2: Yeah, so I actually it's probably maybe two years ago.
Speaker 2: I actually give a class about dementia and the media,
Speaker 2: and there's some fascinating stuff out there, And it's also
Speaker 2: really a big topic of debate because one question is,
Speaker 2: you know, should you basically if you were writing a
Speaker 2: movie about someone with dementia, should your goal be to
Speaker 2: write about the typical cases so that people could learn
Speaker 2: about the disease and see what it usually looks like,
Speaker 2: or is your goal to write about whatever case is
Speaker 2: most interesting, whether it's rare or not. So if you
Speaker 2: think about the example of still Alice and she has
Speaker 2: it's a young it's a woman with Alzheimer's disease, so
Speaker 2: it's a very common disease, but it's young onset and
Speaker 2: in the I think it turns out to be a
Speaker 2: genetic cause, so it's really atypical. Those are like less
Speaker 2: than you know, one percent of cases. And so one
Speaker 2: question is is that a really useful movie, because you know,
Speaker 2: it was a big movie. It got lots of attention,
Speaker 2: so it got a lot of sort of light onto
Speaker 2: Alzheimer's disease. Is that really helpful or is it actually
Speaker 2: like you're making people think that it's all caused by
Speaker 2: a single gem and actually that's that was a really
Speaker 2: unusual case. Or if you're portraying, you know, people with
Speaker 2: dementia getting diagnoses, should you portray a compassionate doctor or
Speaker 2: should you portray what often gets portrayed, which is neurologist
Speaker 2: as being sort of aloof and sort of not emotionally engaged,
Speaker 2: and you know, how do you portray that interaction? And
Speaker 2: I think the bottom line is that it's complex and
Speaker 2: the most important thing from my perspective is really just
Speaker 2: portraying the humanity of the people with the diseases. The
Speaker 2: key is not talking about them when they're in the room,
Speaker 2: So portray them as you know, real people, and then
Speaker 2: you can drop clues in of like you know this,
Speaker 2: you know this is unusual, so you know this is
Speaker 2: a to atypical cakes or something like that, so you
Speaker 2: can get around that stuff. But the he really is
Speaker 2: to try to portray some sort of semblance of real
Speaker 2: life and you know, experience with these diseases.
Speaker 1: I want to take that class that sounds really interesting
Speaker 1: in your book. You also tell the story of a
Speaker 1: young woman who is diagnosed with NMDA receptor encephalitis, and
Speaker 1: I love how her mom was so integral and like
Speaker 1: pushing for no I think it's this and you know,
Speaker 1: just advocating, advocating, advocating, and how frustrating but also inspiring
Speaker 1: that part was. But one of the things that you
Speaker 1: point out is how different this person's experience might have
Speaker 1: been if she had gotten sick just a couple of
Speaker 1: decades ago, when the disease was largely unknown or completely unknown.
Speaker 1: And I know there's been some speculation of like historical cases,
Speaker 1: might the people accused of witchcraft actually had NMDA receptor encephalitis.
Speaker 1: So do you feel like there might be other fields
Speaker 1: in medicine or other conditions in medicine that might undergo
Speaker 1: a similar revolution in the future.
Speaker 2: Kind of DA receptor encephalitis is a wild disease that
Speaker 2: essentially works like PCP and now has been getting increasing attention,
Speaker 2: but it's it's still rare, and so the hope is that,
Speaker 2: you know, kind of we get there with the more
Speaker 2: common things like Alzheimer's disease, and so that's the that's
Speaker 2: the goal, And then the other question, which is to
Speaker 2: be honest, beyond my field of expertise, is you know,
Speaker 2: all these psychiatric diseases that we think of, you know,
Speaker 2: there's this schiz of them the late eighteen hundreds, and
Speaker 2: you know, psychiatry and neurology so suddenly split and dementia
Speaker 2: is kind of at the seams because it's you know,
Speaker 2: there may be a molecular cause, but a lot of
Speaker 2: the symptoms are sort of psychiatric in nature, and it's
Speaker 2: sort of gone along. It's gone along at the scenes
Speaker 2: of psychiatry and neurology. And one question is, you know,
Speaker 2: are we going to move that over more to psychiatry.
Speaker 2: So things like schizophrenia and other conditions that we think
Speaker 2: of as being really purely psychiatric, are those also going
Speaker 2: to end up having molecular causes over time? But I
Speaker 2: don't know.
Speaker 1: Even though dementia has been now sort of broken down
Speaker 1: into many different types where you can specify this versus that,
Speaker 1: and maybe the medications might be different, but is non
Speaker 1: pharmaceutical therapy or just care. Is are there similarities in
Speaker 1: the way that all of these different types of dementias
Speaker 1: are treated.
Speaker 2: Yeah, so there's a lot of similarities, and that comes
Speaker 2: that sort of becomes of importance because in some cases
Speaker 2: we say, you know, look, I could put you through
Speaker 2: this invasive test to try to figure out what's actually
Speaker 2: going on in your you know, at a molecular level
Speaker 2: in your brain, but it's not worth it because we're
Speaker 2: going to treat it the same. So that really comes
Speaker 2: to it's actually a clinically relevant question. And the bottom line,
Speaker 2: there's a few rules of some that really are very helpful.
Speaker 2: Things like, you know, people come in all the time
Speaker 2: and say, you know, when someone makes a mistakes, should
Speaker 2: I correct them or should I not correct them? And
Speaker 2: the bottom line for most of this stuff is essentially,
Speaker 2: if it's not unsafe, you don't need to correct them,
Speaker 2: and that, you know, having dementia oftentimes people are not
Speaker 2: aware of it, or if they're aware of it, it's
Speaker 2: painful for them to to think about. And so the
Speaker 2: general approach really is if it's not it's safe, you know,
Speaker 2: if they want to, you know, if they think that
Speaker 2: their dead father is coming for dinner, then by all means,
Speaker 2: let them set the table. That's okay. You know, it's
Speaker 2: not going to hurt if they are wearing their clothes
Speaker 2: inside out. Who cares and in the same way, you know,
Speaker 2: in public. One thing that we sort of talked to
Speaker 2: care Grave is about is, you know, if you're worried
Speaker 2: about them doing something socially inappropriate, you know, carry on
Speaker 2: business cards. I just say, you know, look, my loved
Speaker 2: one has this condition, Thanks for your understanding, and you
Speaker 2: just pass it to someone after it happens. And that
Speaker 2: way you're not having to like yell at your loved
Speaker 2: one in public, you're not having to explain it to
Speaker 2: someone else, and it actually spreads awareness and people realize that,
Speaker 2: you know, there's more than what meets the eye. So
Speaker 2: there's all sorts of things like that, and things like
Speaker 2: we talk a lot about sort of empathic lying and basically,
Speaker 2: you know, not if you need something to get done
Speaker 2: and trying to frame it in a way that has
Speaker 2: nothing to do with the person's cognitive status. So, you know,
Speaker 2: if you need someone to move to a facility, how
Speaker 2: do you figure out some explanation for that that doesn't
Speaker 2: completely involve their cognitive status? Because if you can imagine,
Speaker 2: oftentimes the example we give is like, you know, tell
Speaker 2: the normal cognitively normal care partner, like if I was
Speaker 2: going to try to convince you to move to a
Speaker 2: nursing home. What would I have to say? And it's
Speaker 2: tough to think about because with all these conditions, you're
Speaker 2: dealing with people who live in a different world in
Speaker 2: some ways, and so the tools, regardless of the type
Speaker 2: of dementia, a lot of the tools are the same.
Speaker 1: From that perspective, has the process of writing this book
Speaker 1: changed the way you practice medicine or the way that
Speaker 1: you interact with your patients.
Speaker 2: It had. I didn't expect it to. I think I
Speaker 2: thought of it initially as like two separate things, but
Speaker 2: I now when I get I mean a lot of
Speaker 2: what I do is give diagnoses of untreatable neurodegenerative progressive diseases,
Speaker 2: and I talk now a lot of the diagnoses. I
Speaker 2: talk a lot about the history of the diseases because
Speaker 2: it made me realize, like we all carry around these
Speaker 2: diagnoses and we have no clue where they came from.
Speaker 2: It's sort of as if like they were always around,
Speaker 2: but none of these diseases were known from the beginning
Speaker 2: of time. And talking to people about how these diseases
Speaker 2: were discovered, actually, first of all, it allows you to go
Speaker 2: back to the basics. So it allows you to communicate
Speaker 2: at a level that's actually more scientifically clear, and also
Speaker 2: it gives people a sense of you know, look, this
Speaker 2: is an evolving field, and our hope is to find
Speaker 2: cures for these things, and not that this is a
Speaker 2: static you know, it's not that Alzheimer's thease has always
Speaker 2: been around and we've never made any progress. It was
Speaker 2: discovered at a certain time and in factually made a
Speaker 2: lot of progress, and there is a lot of hope
Speaker 2: even though it's true we haven't found a cure, and
Speaker 2: so I try to couch the diagnoses and the sort
Speaker 2: of the history of the diseases now and I haven't
Speaker 2: gotten any negative feedback, so hopefully it works, Okay.
Speaker 1: I know. I love that you cover so many different
Speaker 1: diseases in your book, and they range from ones that
Speaker 1: are fairly well known, like Alzheimer's, so those that may
Speaker 1: not be on most people's radar, like an MDA receptor encephalitis.
Speaker 1: Even though it has got you gotten more press recently,
Speaker 1: do you find yourself more intrigued by one than the other,
Speaker 1: or do you find them all equally interesting, or are
Speaker 1: there aspects of these conditions that you find the most compelling.
Speaker 2: I think the cases that move me most are the
Speaker 2: ones where people have these atypical symptoms and they're walking
Speaker 2: around thinking that they're crazy. So people who have, you know,
Speaker 2: speech problems and they say, you know, look, for the
Speaker 2: past few years, I feel like people think I'm drunk
Speaker 2: every time I open my mouth because my words don't
Speaker 2: come up clearly. And it's very emotionally fulfilling to be
Speaker 2: able to say, you know, look, actually there's a name
Speaker 2: for this disease, and you're not crazy, and this is
Speaker 2: what's going on. And you know, if I had to
Speaker 2: put money down, this is the molecule that I think
Speaker 2: is going you know, hey, why are in your brain?
Speaker 2: And this is where we are in terms of trying
Speaker 2: to find treatments and here are research opportunities. That's sort
Speaker 2: of the most fulfilling is is these atypical cases where
Speaker 2: they've gone years without a diagnosis and you can say,
Speaker 2: you know, look, this is what's going on. I mean,
Speaker 2: the typical ones are also interesting, because you know, even
Speaker 2: typical cases bring up interesting family dynamics, But for me,
Speaker 2: it's sort of the I think it's sort of the
Speaker 2: atypic ones that are the most fulfillingent clinic.
Speaker 1: What is something you wish you had known before starting
Speaker 1: on your career journey.
Speaker 2: I guess this is part of my learned in the book.
Speaker 2: I guess I think the biggest thing was that I
Speaker 2: wish I knew more about communicating with patients. So much
Speaker 2: of medical school is like trying to cram an enormous
Speaker 2: amount of information in your brain, much of which if
Speaker 2: you become you know, a secialist or a subspecialist, you're
Speaker 2: literally never going to use. And so much of it
Speaker 2: is just this academic exercise and there's not as much
Speaker 2: emphasis on like how do you explain a disease to
Speaker 2: a patient who has no medical but background and variable
Speaker 2: health literacy? And that's I think In writing a book
Speaker 2: of for the lay public, I was in a writing
Speaker 2: group with lots of people, none of whom had any
Speaker 2: sort of medical background, and it was they were all
Speaker 2: very educated and there were I was like shocked. There
Speaker 2: were words that I would use and they would say like,
Speaker 2: that's that doesn't make sense to me. I don't understand
Speaker 2: that explanation, and I realized it was not them, it
Speaker 2: was my feeling. And I think I wish I was
Speaker 2: emphasized in medical school more. I mean, there's so much
Speaker 2: to learn, and there's like there's more to learn every day.
Speaker 2: So you only have four years and how are you
Speaker 2: going to learn all this material? So I know that
Speaker 2: it's sort of tight to fit in new stuff, but
Speaker 2: it's really something that's not covered much in medicine.
Speaker 1: What a fascinating conversation. I had such a great time
Speaker 1: chatting with you, Doctor Peskin. Thanks so much for taking
Speaker 1: the time and for writing such a wonderful book. If
Speaker 1: you all enjoyed this as much as I did and
Speaker 1: want to learn more, check out our website this podcast
Speaker 1: will kill You dot com. We're I'll post a link
Speaker 1: to where you can find a molecule away from Madness,
Speaker 1: as well as a link to doctor Peskin's website, and
Speaker 1: don't forget you can check out our website for all
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