Ep175 Who Are You When Your Brain Changes? with Robert Kolker

How much of who you are is written into the circuitry of your brain? If your brain changed, would you still be the same person? Or does your personality change too? And can someone lose who they are without realizing it? What happens when the person changing is the only one who can't see it? And what does it mean to love someone whose personality has become unrecognizable? If you carried a genetic mutation that would alter your brain in the near future.

Would you want to know?

Today, we sit down with Robert Kolker, bestselling author of Hidden Valley Road, to discuss these questions in the context of his new book, The Vanishing Family. Welcome to Inner Cosmos with me, David Eagleman. I'm a neuroscientist at Stanford. And in these episodes, we sail deeply into our three-pound universe to.

Understand why and how our lives look the way they do. Who are you? This sounds simple enough.

You have a name and history and a collection of memories and a relatively fixed personality and a set of people who you love. You have your characteristic ways of reacting to the world. And this is how everyone knows who you are. And you know what makes you angry. You know what makes you laugh. You know the things you care about and the things you would never do.

And all of this personality, who you are, arises from the three pounds of circuitry inside your skull. Over the decades of your life, your brain has shaped itself into a unique network, a mind-bogglingly complex network of trillions of connections. And the exact details of that network equal the person who you experience yourself to be and the person that all the people in your.

Life know as you.

And this is the whole shebang, your attachments, your judgments, your impulses, your inhibitions. your sense of right and wrong, it's all determined by the exact configuration of your neural networks.

Now, you might say, look, I don't believe that at all.

Who I am doesn't equal the details of my neural circuitry, all these billions of neurons that are invisibly tiny and that I've never seen. Now, that would be nice if true, but here's the weird part. If that circuitry changes, even subtly, you change. that can change who you are, the decisions you make, who and what you care about.

I wrote a lot about this in my book, Incognito.

If you drink in some small ethanol molecules, those bind to receptors in your brain, and your decision-making changes, we call that getting drunk.

You have drugs of all.

Sorts that are just little molecules of particular shapes that bind to receptors on your neurons, and suddenly you're talking to silver leprechauns or whatever. These are temporary changes and they change you, but we see deeper changes when people get strokes or tumors or traumatic brain injury. The brain tissue changes and so does the person. Someone can become someone quite different. You see this a thousand times a day in any neurology clinic, and that's how we know that you are your brain. Now, I've studied and written about lots of brain disorders, but there's one in particular that I often.

Revisit because it's It gets at the heart of this issue.

It's important and it's horrifying because it's subtle and it makes slow changes.

To a personality.

It's not like something like Alzheimer's disease in which it's obvious that a person's memory and cognition are changing. Instead, the one we're going to talk about today is more subtle. What happens is that someone's interests and personality and empathy and aspirations start to alter and And the people around them aren't sure if they're seeing that right, and they impose different interpretations, many of which miss the target, because the subtle thing that's changing is who the person is.

I don't want to give away too much about today's conversation, so let's jump into it. Today, we're joined by the writer Robert Kolker, who has a new book about this rare disease.

Called The Vanishing Family.

Robert is a terrific journalist whose superpower is embedding himself with families and and telling a story of neuroscience through a very intimate lens. Kolker's writing takes us into some of the deepest questions about the relationship between the brain and the self.

What happens when the.

Biological machinery underlying a personality begins to change? What does that mean for the people who love that person? And how much of the person we call ourselves depends on the brain we happen to have?

Here's my interview with Robert Kolker.

So you wrote Hidden Valley Road, which is a wonderful and important book about a family with schizophrenia. And now you've written another book about a family with a brain disease.

And when I read an.

Advanced copy of this some months ago, I said, it's like you're one of those great war correspondents who tells the story of a big battle by looking at the intimate lives of the families caught in the crosshairs. And so you're looking at this family with nine children and two parents. And what I want to start with is the mother, Jean, who starts becoming withdrawn and neglectful and emotionally unfamiliar before there was any sort of diagnosis.

How did the family interpret that? What did they think was happening? Well, first of all, thank you again.

The Jean and her family, they were a large family, but it was a normal family, a middle-class family in the outskirts of Pittsburgh, Pennsylvania. They brought up most of their kids in the 60s and 70s and then had one late-in-life baby who grew up in the 80s. And for most of that time, they were a pretty exemplary family.

Their dad was an accomplished engineer. Not everybody in this community sent their kids to college, but they sent their kids to college and graduate school. There were kids who went off to study aerospace engineering and civil engineering and became consultants and executives at Fortune 500 companies. Jean herself was this very put together person who went to the hair salon twice a week and made two dinners a night, one for the kids and one for her and her husband.

And then somewhere after the last child is born and into the 1980s, she transforms. She She stops, you know, she stops taking care of herself. She does nothing but smoke and drink. She disengages from the world around her. The youngest child, whose name was Barb, was left to grow up, basically raising herself because the father in the family, Ali, had basically left.

And so.

She was there having to fix herself dinner. And there were, you know, moths in the kitchen and termites in the house and a mother who was dying.

Losing weight and drinking all the time.

And so she was, you know, Barb, the child was just enraged and also filled with sorrow and eager to distract herself by going to see her older brothers and sisters.

And no one knew what was going on. And so what happened is they eventually got a diagnosis and that changed their interpretation. Tell us about the diagnosis. Well, for Jean, they decided it was alcoholism.

And so they had an intervention and they were expecting her to put up a fight. But strangely, this is like yet another strange thing that happened to the family. She said, okay, and just stopped drinking and that she just continued to be the same transformed person she always was.

So it turns out alcohol wasn't really a part of it.

But then she reveals that she's been suffering from breast cancer that she'd never.

Gone to a doctor for. And by the time it was discovered, it was too late.

And so she dies in 1990 at the age of 62 with the family left basically traumatized and wondering, why didn't she see a doctor? Why didn't she take better care of herself? Why did she drink up until that point? Why did she continue smoking? And they're left without a clear answer of what happened.

And so when did the family figure out what actually was going on with Jean?

It took two of the children developing similar symptoms. A few years after the mother's death, one child, Christy, who's one of the older children, she, you know, falls out with her husband, disengages from her kids, sits around and watches TV all day, eventually loses custody of the kids in a divorce and is living at home, basically living the life of a hoarder and watching TV until finally she ends up in a psychiatric hospital and is misdiagnosed with schizophrenia. The family notices, obviously, there's a relationship between mother and daughter, but at that time, and this is the 90s, they think, well, maybe this is how our family responds to crises. Maybe some of us fall apart and we have a certain melancholia or a tendency toward depression.

In our family, when our husbands leave us, they.

Really aren't oriented around a hereditary issue until the next child in 2006. Think of that, like 16 years after the mother dies, suddenly develops the same symptoms. And that's when they start to realize this is genetic, this is inherited. and they all might have it. And it's a panic moment for all of them, especially since many of them have already had children.

And so what was it?

It was frontotemporal dementia. Frontotemporal dementia is sometimes inherited, sometimes not. And it's a neurodegenerative disease like Alzheimer's disease. It's a little more rare. And it affects your brain at first very differently from Alzheimer's. When we think about dementia, we often think about Alzheimer's. We think about cognition. We think about memory. But with this variety of FTD, the family's symptoms were behavioral and about really reaching the heart of your personality almost.

They develop intense apathy.

And impulsivity and compulsivity, some of them start drinking, some have affairs, some drain their bank accounts, some run red lights, but they retain at first at least their memory and their cognition so they could actually still be working and developing these strange new personality traits. So it becomes next to impossible for their families or for even sometimes doctors to get a handle on what's happening. And of course it goes misdiagnosed for years and years.

And, you know, FTD intersects with the legal system all the time where people get in there because they're cussing at someone in public or they're running a stop sign or they're beating somebody up. And then their adult children have to come to court to try to explain that it's not quite their fault.

It's something that's happening in their brain. Exactly, exactly.

And it's a much more clear cut than, say, other forms of mental illness where they commit a crime and the There's areas, whole areas of law and specialties wondering about culpability. But in this case, with FTD, quite often you can actually look to a specific genetic mutation that has caused this issue in their brain. And so you can really stand up and say, this person isn't the same person they were before just a few years ago.

Now, one of the things that's so striking about FTD is that there's a lack of self-awareness for the person who has it.

This is known as a nocignosia. They're not at all aware that they are changing. There's something going on. What is that like?

What did you see in this in terms of how the family is viewing somebody who is changing, who doesn't realize they're changing?

The folks who have schizophrenia, who have anosognosia, are often rather upset about the whole thing. They become really anguished and combative and insecure when they're told that they're sick.

The people with FTD... are like the opposite.

They're kind of, complacent isn't the word, but maybe blithe is the word. You say to them, you have this, and they say, no, I don't. Or actually, even more negative things they're invulnerable to, like the husband or wife says, I'm leaving you, and they say, oh, okay. When we think about Alzheimer's, there are often these very sad stories.

I'm sure folks in the audience have encountered it where The person is really, really tormented and really upset all the time and perhaps combative and angry. But with FTD, they're so blunted emotionally that the lows go first and then the highs go too. But they're often, they're not the ones who are outwardly suffering. It's the people around them.

So when you look at something like FTD, I'm curious about your experience in writing this book. So, you know, empathy changes, affect changes.

And you see that somehow what we think of as the self depends on what's going on in the brain tissue.

And when that alters, then the self alters as well. So how did you come away from this research thinking about what the self is?

One of the things that I really wanted to explore in this book is what took it far away from Hidden Valley Road, from my previous book, which was, that was about schizophrenia. But with this, the condition really speaks to the heart of what makes us who we are. We don't know what causes schizophrenia, right? We've tried, but we can't find what a smoking gun caused for it.

But with this, you know exactly what it is. So if we know that one genetic mutation is can completely transform your personality early in your life, in your 40s, not in your 90s, then what is a personality? What is it about any of us that's real or lasting? And if it happens to a whole family, there's a story to tell there about how they come to reconstitute themselves, relate to one another, understand who the new people are, and mourn the people who are gone. It's a story that is it's dramatic and vivid, but I think it speaks to experiences a lot of us have had with people close to us who go through their own changes.

And let me just expand that to the issue of relationships. So one of the siblings, Sue, took care of her sister, Christy, for decades, I guess, even as Christy became somebody who she didn't know, I mean, who was totally different than she was as a young person.

And the question is, what is it that keeps a relationship there?

What is a relationship predicated on if not memory and reciprocity and continuity of personality.

You've heard it said we're becoming a nation of caregivers, that there's probably one in every family, that the healthcare system really can't sustain things without there being people changing their lives to become caregivers. The story of Sue and Christy is a caregiving story for the ages. Sue is in her 30s when her sister Christy, her older sister who she idolized, develops these symptoms and completely changes. Sue considered herself the family's underachiever. Christy was an executive who traveled the world for a pharmaceutical company before she transformed.

And now suddenly, Sue is dealing with an entirely different person and is caring for her full-time with no idea of where this is leading. And It's easy enough to think of Alzheimer's as an elderly disease, but when there's early onset with this variety of FTD, it can go for as long as Christy lives. And that's exactly what happened.

You could say that Christy changed, but Sue changed as well. She and Christy, their lives became enmeshed. Sue cared for her full time. And also when other people in the family started to become symptomatic, she spent time taking care of them as well, took in one or two of them.

Some for short term, some for long term. It's amazing to see.

And you learn something about what makes a good caregiver, things that actually surprised me, David. I would think a good caregiver would be someone who's a touchy-feely person and is very sentimental and nurturing. Sue's a really, really nice person, but you wouldn't call her any of those things. She can self-regulate. She can compartmentalize her feelings. She can mourn her sister's on her own time. But then when she wakes up in the morning, she's not thinking about the enormity of her life. She's thinking about what has to happen right now. And often it's those people who don't burn out as caregivers. And this sort of thing is actually a study at Berkeley. They study the psychology of caregiving because it's such an important subject.

Now, one of the really remarkable things about this particular form of FTD is that it is inherited. And if you're the child of a parent with FTD, you've got a 50-50 chance. And so some of the members of this family wanted to get tested and some did not. And what do you see, having watched what happened in the family, in terms of the value or the cost of knowing your biological future?

This is a This is a question that I thought was just one of the many questions I'd be exploring in the book, but it turns out to be the thing that a lot of readers are connecting with the most. Maybe because we all can take tests about our medical future. We all go see the doctor and wonder, is this the day my life is going to change? And so here you have a family of nine siblings that are told, finally, in 2008, what their mutation is and that they can take a test for it.

And even the most....

Zealous people who want to define the diagnosis suddenly pump the brakes and say, oh, wait, I'm not sure I really want to know. They're afraid it might end their normal lives and make them feel stigmatized in their minds. Because I think of the way we all think of dementia. We kind of put it in a box and say, well, I certainly don't want to get that. And so when you hear when somebody has it, we can't help but perhaps distance ourselves from them. They don't want to be distanced.

They want to have relationships with their children. And it's all over the place whether they got tested or not. Some got tested right away. Some gave themselves a deadline until they were 40. One member of the younger generation gave herself a deadline when she was 30. One person in her 20s in the younger generation didn't get tested and eventually was getting married to her college sweetheart and decided that she would get tested after the.

Wedding, which.

was fine with her fiancé, but not with her fiancé' s family. They were a little uptight about that and wanted to maybe persuade her to get tested beforehand. The multitude of reactions within one family makes the story interesting, I think, for readers, because you can try on different people's rationales for size.

Like anyone else, I came in with preconceived notions. I thought, well, I'd want to know. But then as I talked to people, there's a woman who's now a mother of two.

She's married. She has not tested herself. And she knows she has a 50% chance of having this. And she hasn't tested the kids. And at first you would think you might have a judgment of her, but she does not have her head in the sand. She's talking to her therapist about it. She's making measures to provide financially for her kids if something happens to her. But then she also says things like any of us could get hit by a bus tomorrow. Any of us could be carrying around some sort of genetic predisposition to some sort of tragic illness that you can't test for or that you would never see coming. And so why should she end her normal life when no one else has?

The question of children, though, is a really interesting one.

Right, because then it's this question of how much can you defend someone's right not to test when whether they're a carrier or not affects their children.

So there's an option here with a single gene disease.

You could do IVF and do what's called selective embryo transfer, where you test an embryo for the mutation. And if it doesn't have the mutation, you implant that embryo. And that way, you've stopped the disease in its tracks. Uh, but you know, there's a woman in this book who, and then again, a member of the younger generation. So she'd known for a long time that she might have it and she tested positive. And so she decided to do selective embryo transfer, but she had four rounds of IVF and it didn't work. And then one day she gets pregnant and she's 38 years old and she and her husband talk about it and they decide to have the child and the child, you know, is, first grader now, and they will engage with this issue later, but they've

chosen a life of radical optimism, which in the book, I say something like, if you're faced with a really terrible fate, maybe the most radical thing you can do is decide to have a good life, no matter what. And of course, there are other people in the family who silently judge her. There are other people who support her.

It's a, I guess you would call it a gray area, David.

You know, it's interesting because now in the era of AI, a lot of people I think might have hope, whether or not correctly.

Saying, hey, look, 40 years from now, surely there'll be a cure for this at that time.

Certainly, you can have hope that things will accelerate. I mean, what I learned most when researching this book was how little we do know. You know, when you talk about Alzheimer's, you talk about plaques and tangles. Those are proteins that load up in your brain if you have Alzheimer's. We don't know why the plaques and tangles show up. We don't know what causes them. We don't know what they do, really.

We don't know what they're for. We still don't really know how to get rid of them, although we're moving along with amyloid. But we also don't know whether it's a good idea to get rid of them. Maybe we need a little tau and amyloid, a little tangle and plaque in our brains.

We're just trying things to see if we can get results, which is, I guess.

what science does and i don't mean to be derisive but it's you the only way you can learn is through experimentation and we're all we're still in that early phase with this disease yeah quite right.

And in fact um one of the things you point to in the book is the the.

Baptist versus the taoist can you explain that so you know not to get out the charts and graphs or anything but the the um The amyloid protein, those are the plaques.

That's the beta amyloid protein, BAP.

And so the people for decades who really were going after the beta amyloid protein were called Baptists.

And then the tangles are the tau protein.

And so the people who believed that the tau protein was the prime mover in Alzheimer's were called Taoists. And it was the Taoists versus the Baptists for decades. Although, really, for most of that time, the Baptists were really winning. because they had found some exact genetic links to Alzheimer's through the beta amyloid protein. But they spent decades and tens of billions of dollars, at least, with trying to come up with drugs to get rid of amyloid in your brain.

And it never worked.

Until recently, they finally are reducing amyloid through these new medicines. But the punchline is that They can reduce amyloid, but the disease doesn't go away. It changes your symptomology. And if I had this condition, I would want the drugs. But it just slows it down. It's not going to stop it. So clearly something else is going on here.

I think what's happened, David, is we've developed a more mature and nuanced understanding of neurodegenerative diseases.

We know it's not all Alzheimer's now.

In the 80s, we kind of thought it was all 90% Alzheimer's, but it isn't.

Maybe 60% now.

But also, we understand that it's going to take something like what we do with cancer, some sort of precision medicine approach, where even people who share the same diagnosis will have different drug protocols based on their genetic makeup. And actually, that brings us back to AI. The folks at the brain banks... that I talked to, they love.

The idea of AI.

Like, what if everybody uploaded all of their brain bank information into one center and had AI working on it 24-7 to find things that human beings hadn't noticed that we had in common?

Our understanding of the brain could really move forward quickly. And Will, this is exactly what's happening.

And, you know, with the plaques and tangles, the issue is just that it appears that it's sort of the exhaust. It's the thing that is the consequence of Alzheimer's disease, not the cause of it.

And so for decades, going after that wasn't really the right move.

Yeah, but maybe your brain needs a better garbage disposal, right? So now they're focusing on inflammation issues that are hard for me to describe as a layperson, but basically helps your cells clean out protein.

Yeah.

So we'll look back in 10 years and have a whole new vocabulary for it and see where we are. But the good news is that labs all over the world are working on Alzheimer's, they're working on FTD and so on. So things are moving fast. Going back to the book, something that's quite striking is some number of the family members said, look, if I start presenting with these symptoms, I'm going to end my life.

But none of them did.

None of them ended their lives, even though some presented with the symptoms and had FTD. And so the question is, this really illustrates the gap between the anticipating self and the experiencing self. And so what did you learn about that gap and what this means for advanced directives?

Yeah, when the veil is finally lifted and the family is diagnosed with a particular mutation and they know that there's no cure, some of the siblings get around in a circle at the Mayo Clinic and they say, listen, tell me. Tell me if I start to change because if that happens, I would like to end my life.

And then somebody says, me too. And someone says, me too. And then everybody sort of agreed that's what they would want to do. And we see this out in the world. People have advanced directives that say, if I no longer can make decisions for myself, this is what the life I want to lead, or this is how I might want to perhaps try to do.

You know, um, right to die.

Um, the issue here with FTD is that nobody, nobody's gone forward with that, that as soon as they're symptomatic, not only do they not think they're sick, they're also not troubled by their condition and, and they aren't interested in, they haven't given a first thought or even a, you know, to, uh, to think about ending their lives. It's a disease that really affects the people around them more than in a way that it affects them. Although of course they are incapacitated and not the same people they were before.

So in your last two books, you've written a really intimate portrait of families alongside with the history of science. And it's a lovely structure. And my question is, what is it that you can tell, that you can communicate about the mind from being in the family versus just telling the history of science?

In my career, I've loved nonfiction books that get you into a strange area that you might never understand otherwise. And their way in is through an absorbing story. and sometimes they lift the veil on whole parts of the world that I might never go to. Off the top of my head, there's Behind the Beautiful Forevers by Catherine Boo, which is about the slums of Mumbai, which I know nothing about, and I've never been near. But the stories that it tells, it's like reading Oliver.

Twist or something. You want to know what happens.

You turn the pages, and along the way, through osmosis, you're learning all sorts of complicated information about what life is like there, what the political situation is, And it doesn't read like a textbook.

It doesn't read like a newspaper article.

And for people who like to write nonfiction, that's the dream. You learn about something new, something mind-blowing, like dementia or schizophrenia or any number of other subjects. But you do it by going deep and intimate with people who are living it so that the reader can identify with what's going on and try it on for size.

It's happened that my last.

My books have been about families because I think they just offer more windows, more chances to see different people reacting differently to a shared situation, which I think is useful to everyone.

The family is still figuring itself out.

So talking to a reporter sometimes is interesting for them. But also readers get to say, well, am I more like this person or am I more like that person?

You know, my colleague Jonathan Gottschalk wrote a book years ago called The Storytelling Animal. And he makes the argument that we have a story-shaped hole in our brain. And that's the only way you can get anything in there is via story. He compared it to the Death Star where Luke has to drop the bomb right in that thing.

I imagine I'm shoveling coal into that hole. I'm just filling that hole. Okay. So here's a question.

So you called it the vanishing family, but the word you used a few minutes ago is, is reconstituted. The family was reconstituted in terms of love and advocacy and caregiving. And so my question is in a situation like this, what vanishes and what remains and is unexpectedly durable?

Um, Well, the family certainly, it was like a bomb going off in the family. There were a couple siblings who just didn't want to engage with the dementia issue and said, I'll see you at Thanksgiving, but I'm not going to go to the Mayo Clinic.

I'm not going to deal with this.

And then there were other people who were living at 24-7 and really racing for a diagnosis and then for a cure. And then, of course, the people who become symptomatic, their lives and their kids' lives, it's a nightmare.

And so.

quite clearly they felt as if the family was vanishing and that certain people were vanishing. What's inspiring and strangely hopeful about their story is how they do reconstitute and how they come to terms with the people as they're changing, but also bond together in trying to think about ways to raise awareness for a cure. A rare disease like this needs patients to.

Get the attention of drug companies and researchers.

So they've helped form an advocacy group. That group has amassed hundreds of families now that are on a registry that are ready to be tested by any pharmaceutical company. The pharmaceutical companies are actually meeting with them and paying attention. And this kind of momentum provides a sense of optimism and has actually bonded members of the family who didn't even grow up in the same city. And some of them, they aren't even the same generation. So aunts and nephews and nieces are suddenly going to biological conferences together, academic conferences and meeting with pharma executives together and doing Instagram reels together, you know, trying to raise awareness.

So it's inspiring, I think.

Wonderful.

What is the one thing when people read your book that you want them to remember or learn about the self.

And about dementia?

Yeah.

So what two things? Well, I went in with a question about the self. I thought, you know, I get it. I'm going to change.

If I'm lucky enough to live into my 80s or 90s, I'll be a different person from who I was when I was eight years old. But what does it mean to actually have a personality change this drastically?

And who are you?

And I went looking for, there are plenty of people, including philosophers, that have looked into dementia as a test case about what the nature of the self is. And what I really came away with was an understanding that dementia maybe shouldn't be in that box, that it shouldn't be stigmatized the way it is, that it is one of many transformative conditions that can happen to a person, that it obviously is dramatic and vivid and even more vivid in a family like this. But there are lots of things that will change us. Addiction changes us. Cancer changes us. Personal tragedy and loss changes us. Autoimmune diseases change us. And and so we can just decide, oh, well, I just won't get dementia. But the fact is that

people with dementia are are as vulnerable as the rest of us. They just happen to be vulnerable in this way. The reason why I think this is important is because it's certainly a tragedy to lose someone to one of these diseases. and a challenge to deal with what comes afterward.

But it, it's worse to say that they're dead.

It's worse to frame it as they're gone and, and they're not there anymore. Um, they're, it better perhaps to not magnify them, the, the issue and to instead say to yourself that they are, they are changing the same, just as we all one day will change. It's just happening to them in this more acute traumatic way. I think it, it works well to, um, understand that these things are on a continuum rather than an on-off switch.

And science backs this up. By the time we're in our 80s or 90s, the.

Researchers tell me we're all going to have two or three of these neurodegenerative conditions. Some will be more acute than others. But at the brain banks, they look at 92-year-olds all the time who have Lewy body's dementia and Parkinson's disease. And that to me kind of takes it away from that on-off switch again, that we're all developing things.

Our brains are constantly reconstituting themselves and responding to our environment and eventually degenerating.

You know what makes things really complicated is when we try to make constraints on our future behavior. The example before was about saying, I'm going to end my life if I present with these symptoms.

But just in general, saying.

Hey, I'm going to put away my money now so my future me can have this retirement money.

You don't even know who that person is in so many ways.

That was my interview with Robert Kolker. One of the central questions in life is what makes me me? We tend to answer this question by reaching for things like our memories and our personality and our values and and our ability to self-regulate, and the people that we love. These things all seem to go together, and we assume there is a continuous self. We assume we're a stable entity that moves through time while the world around us changes.

But sometimes families see a different picture, like the family that Robert embedded with. And this is because, as I said at the beginning, the self emerges from the coordinated activity of billions of neurons. Everything depends on the tiny details of the circuits, our memories, our emotional responses, our ability to restrain an impulse or understand another person's feelings or recognize the consequences of our actions. And all this biological machinery can be altered by injury or disease. The person you experience yourself to be is the product of a living system. And Kolker's new book really brings this home because we see the way a neurological disease can reach into a family. and alter the qualities that make

its members recognizable.

To one another.

People who have known each other for decades find themselves trying to understand behavior that no longer fits their model of the person they love. And as we talked about, for the person experiencing these changes in frontotemporal dementia, they can't see it. The family members around them can see the changes, but the person doesn't. asymmetry of people in a relationship experiencing very different realities. And one of the things this tells us is that the brain's ability to inspect itself has limits. The same machinery that generates our beliefs can also shape our confidence in those beliefs. The machinery that regulates our behavior can change in ways that alters our capacity to evaluate what we're doing. In college,

I took several philosophy classes and I enjoyed them, but I preferred neuroscience because I eventually felt that we could get a lot further on questions of the self if we directly examined the perceptual machinery by which we view the world. Brain science is what allows us to look at the bits and bobs that make thought and action possible.

So if you look at something like the concept of moral responsibility, we often judge a person by what they do and we draw conclusions about their character from their choices. We assume that running a red light reflects something about the person or on the flip side, that generosity tells us something important about their values. And these sorts of judgments are generally very useful. They help us navigate social life and establish expectations for each other. But brain disease reminds us that behavior depends on biology. And that includes our capacities for inhibition or empathy or emotional regulation or judgment.

When those capacities change, our interpretation of someone's behavior changes. may need to change with them. The question of responsibility becomes more complicated, and so does the question of forgiveness. This will be familiar territory to you if you've ever watched someone you know go through a major neurological change.

It can sometimes be difficult to reconcile the person you remember with the person who's standing in front of you. One more topic I want to touch on is that our conversation also involved genetic knowledge and the choices that it creates for the The future becomes a source of uncertainty more explicitly than normal. This is especially true if there's a clear genetic test that will tell you your own prospects and what faces your relatives and children. Some people want to know as much as possible. Others want nothing to do with that. And both decisions raise really difficult questions about the relationship between knowledge and freedom.

What do we owe our future selves? What do we owe our children?

What's the right way to make the decisions today? Like, should I make an advanced directive when we can't really predict very well how we're going to experience the future that those decisions create? Regarding this last question, we tend to imagine our future selves as extensions of the people that we are today. We project our current fears and preferences and priorities forward, assuming we're going to continue to evaluate the world through the same lens that we do now.

But the problem is that we are all changing biological systems. Our desires shift, our values evolve, our relationships reshape us, our brains change through learning and aging and experience and all the interactions between our biology and the world around us. And we have to make decisions for people who we have not yet become.

All this gives us.

Many reasons why the right way to learn about any brain disease is to take an approach like Robert gives us through the lens of a family where we can see the human issues and try on different choices. So coming back to the heart of the story, A family who's trying to understand a loved one's changing personality is confronting the same basic mystery that occupies neuroscientists. How does the physical brain give rise.

To the person?

As heartbreaking as Robert's Chronicle is about the vanishing family, the hope comes out of our increasing understanding of the brain. Because as we dig deeper into the processes by which the neural machinery gives rise to personality... that gives us the possibility of helping people with devastating diseases like frontotemporal dementia.

We can increasingly detect problems earlier, and every small discovery about the machinery of the mind creates new possibilities for treatment and for supporting families and for giving future generations more choices than the generations before them had. So while none of us can be sure who we're going to be years from now, we can keep expanding what is possible for that future person through science, through the choices we make today, and through the care that we offer to one another along the way. Go to Eagleman.com slash podcast for more information and to find further reading. Join the weekly discussions on my sub stack and check out and subscribe to Inner Cosmos on YouTube for videos of each episode and.

To leave comments.

Until next time, I'm David Eagleman and this is Inner Cosmos.

Ep175 Who Are You When Your Brain Changes? with Robert Kolker

Kapitelklicken springt direkt hin

Shownotes

Transkriptvom Podcast bereitgestellt · Zeitmarken springen hin