TED Radio Hour - Memory And The Brain

Episode Date: March 1, 2024

Original broadcast date: December 23, 2022. Our brains are magnificently complex - and highly fallible. This hour, neuroscientist and novelist Lisa Genova explains how to keep our brains healthy and what to do when something goes wrong. TED Radio Hour+ subscribers now get access to bonus episodes, with more ideas from TED speakers and a behind the scenes look with our producers. A Plus subscription also lets you listen to regular episodes (like this one!) without sponsors. Sign-up at plus.npr.org/ted. See pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

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From TED and NPR. I'm Manoosh Zamorodi. On the show today, memory and the brain. So it was a few years ago. I was somewhere in my mid-40s. And I drove from Cape Cod to Cambridge, Massachusetts to give a talk. This is neuroscientist and novelist Lisa Genova. And I parked my car in a parking garage.

And I was a little bit late. I was running late. So I got out of the car quickly, ran off a couple of blocks to the venue, gave my one-hour talk, signed some books. And I was done within an hour and a half. I'm back at the parking garage. And I could not remember where I parked my car. So I thought I had parked on level three, but I couldn't find it there. So maybe it was level four or could be level five.

I wasn't sure. So I'm walking up and down the ramps. I'm in heels. I'm sweating. I'm anxious. I'm frustrated. I'm pressing the button on my car remote, hoping to see the flashing lights or hear a beep.

I'm seeing nothing. I'm hearing nothing. I'm starting to panic. I'm thinking the only explanation left is my car has probably been stolen. And I'm about ready to call a friend who's a Boston police officer to ask what to do. When I finally just randomly happen upon it, exactly where I had parked it on level three. And so I'm frazzled and I'm so upset with myself and I want to blame this whole frustrating experience on my memory. But the neuroscientist in me stepped in and

saved me. Maybe you've had a moment like this, losing your car, misplacing your keys, walking into a room and not remembering what you're there for. A lot of us in that moment might have a heart-stopping thought. Something's wrong. This isn't normal. But Lisa says, actually, it is. Not remembering where I parked my car actually didn't involve my memory at all. It was an issue of distraction.

Because I didn't pay attention to where I parked, I never formed a memory of where I parked in the first place. There's this misconception out there, this expectation that memory is supposed to be perfect, that we're supposed to remember everything. And so that when we forget anything, people think it's a sign of aging or impairment or impending Alzheimer's. But no, this is the price of owning a human brain and you're okay. So today on the show, a conversation with neuroscientist and author Lisa Genova on memory and what's normal and not normal in the brain.

And what we can do to keep our brains healthy throughout our. our lives. So Lisa was in the lab researching the brain for years. But in 2007, she veered in a completely different direction, at least for a scientist. She wrote a novel called Still Alice. It's a book about early onset Alzheimer's. Still Alice became a bestseller and was later adapted into a movie starring Julianne Moore. Since then, Lisa has written four more novels, each about a person living and coping with a different neurological condition. Her latest book, though, is a foray into nonfiction. It's called Remember, the Science of Memory and the Art of Forgeting.

You know, I have a lot of empathy for folks out there who, you know, don't know the owner's manual to their own brains and their memory and how it works. And so I wanted this book to feel really gentle and conversational about, okay, here's how you're, memory works. Here's what it's great at and amazing. It's really, you know, an incredible superpower. And it's highly fallible. And here's what it's not good at. So what can we reasonably expect of it? And how can we help support it? In your book, you write this sentence that I underlined, which is, of all the complex and wondrous miracles that your brain executes, memory is king. And that took me, like, for a minute, I was like, wait a minute. Really? Like, what about? the part that can make my body move its limbs and what about breathing and what about all these other

things that my brain can do? Yeah. Memory is essential to the functioning of almost everything we do. You need memory to walk, right? You learned how to walk. Everything you learned how to do is a memory. So we tend to think of muscle memory as something. Maybe a lot of folks think muscle memory lives in your muscles. But no, this is the memorandum. choreography for how to type emails, how to drive the car, how to brush your teeth, tie your shoes, and so on. We need memory to recognize the people in our lives, the people we love, our family, our friends, our coworkers. We need memory to know who we are, the story of our lives, your biography, your narrative, what happened yesterday 30 years ago. Without memory, we're really

untethered to the life that we live. Let's talk about the basics, because, as you say, like, very few of us even know how memory works. And you ask us in the book to picture a penny in your mind, and you had eight photos of pennies, and they all look different. And you were like, which one is the right one? Which one really does look like the actual penny that you probably have in your wallet?

And I was like, I don't know. I'm not sure. Yeah. And so it is astounding, right? And I want folks to know that, you know, at any age, your memory is limitless and what it can remember if it is given the right kinds of input, if you support it with the right tools. But memory at any age, whether you're 20 or 70, is going to be highly fallible for certain things. And so we can't remember what we don't pay attention to.

You can't remember what a penny. looks like in detail, unless you're a coin collector. Unless you've studied the coin and paid attention to the details, you probably don't really know which way Abe Lincoln's head faces or where the word liberty is. Because these details aren't essential for you to be able to use the penny and spend the penny, you never paid attention to it. So you never created a memory for those details. So let's talk about how memory functions. You say that there are, sort of four steps that we have to go through to get memory to take something in and then hold on to it. Can you give us the basics? Yeah. So memory creation takes place in four basic steps.

The first is that your brain takes in all of the sights, the sounds, the smells, the tastes, the emotion, the language, the meaning of whatever you perceived and paid attention to and translates all of that into neurological language. So what's out there gets into your brain. Then your brain takes all of that previously unrelated neural activity and weaves it into a single pattern of associated connections. So your brain links the information together into a neural circuit. Next, your brain then stores this information,

this woven neural circuit, into lasting alterations in your brain. So your brain changes. It changes in neural architecture, changes in neural chemistry that are stable over time. And then the last thing that happens, the fourth step is that if you later activate this woven circuit, either tomorrow or next week or 30 years from now, you can then retrieve that woven information. You remember. I mean, it's really funny.

It makes me think of the phrase that I've always hated. Let's make some memories that's always seen, but what you're saying is you can. Like you say that there are ways, things that we can do to sort of better encode our memories. Definitely. So our human brains are designed to remember what is meaningful, emotional, surprising, new, and what we repeat and practice. And we forget what isn't. So, you know, our day, if you think about it that way, our day-to-day lives contain a lot of routine, inconsequential things, right? So you get up, you shower, you get dressed, you drink coffee. Same old, same old day after day. We don't remember what same old, same old. Okay. So what did you have for lunch last Wednesday? Oh, gosh.

I don't know. I don't know. Right? You probably don't remember because it's like Sam will say, can you tell me everyone you texted and everyone who texted you two days ago? Oh, gosh, no. I can go look and scroll backwards. That'll remind me.

Right, but this is okay. This is not a problem that we need to fix. Our brains don't keep what same old, same old inconsequential. And so if we want to remember more of what happened in our lives or if we want to remember if we're trying to memorize a speech or remember if we're trying to learn information for a test, how can we make that information meaningful, emotional, surprising, or new. But day-to-day lives, we lose a lot of them. It makes me sad in some ways, you know?

It's like, I mean, especially it makes me sad thinking that when I talk to my kids, they're not going to remember entire years of the time that I spent with them. Oh, I know. And that's maddening. Some of that has to do with the kinds of long-term memory that we have. We have muscle memory, which I've already talked about. And that's really stable over time. That's the expression, you know, it's just like riding a bike. Once you learn how to do something, that memory sticks with you, probably for life.

Another kind of memory is semantic memory. This is the memory for facts and information. This is the Wikipedia of your brain. This is what's your birth date? Where do you live? What's six times six? Also really stable over time. Episodic memory is the memory for what happened in your life.

So this is, you know, oh, remember when, the time when. And this, it turns out like to have a memory of what happened, you have to have language and the ability, because it's the story. Most of us don't remember much of what happened before the age of four, unless there was a death or a move or something very meaningful, emotional, surprising, or new. Because we don't have the language skills developed yet to be able to tell the story of what happened. So most of us will say, like, that starts to come online around, like, you know, seven, eight, like nine, like those memories start happening. But again, whether you're a kid or a grown up, you don't remember what happened on Wednesday, set up. September 17th, 1986, because it was just a regular Wednesday. But if you were on vacation that day,

right, or if that was your birthday, if it's special in some way, I mean, this is why we remember vacations so well, because they're not same old, same old. You're in a new place with new sights and sounds and tastes and new experiences. You're probably also taking pictures while you're there, and those photos give you a chance to revisit what happened. And so now you're you're practicing and you're going over those neural pathways and making them stronger. But day to day, you know, we don't take pictures of, you know, my Wednesday night dinner here with my kids, so we won't remember. And that's okay.

So this is the thing I want people to recognize that you don't have to freak out over, like when you said, oh, that's so sad. It's like, well, our brains are actually designed pretty well. If it's meaningful, emotional, surprising, or new, we keep it. And we can keep it for seven. 70 years, 80 years. We can keep it for a lifetime if it's meaningful and emotional and important. But if it's not, it's okay to let it go.

When we come back, Lisa talks about her bestselling book, Still Alice, and what to do when normal memory loss becomes abnormal. I'm Minouche Zamoroti, and you're listening to the TED Radio Hour from NPR. Stay with us. Before we get back to the show, I want to ask you to please consider becoming a member of TED Radio Hour Plus. You'll get extra advice, stories, and expertise from TED speakers every other week and no ads ever. And you'll be supporting public radio. Listener support is crucial to keeping us going. Go to plus.npr.n.org slash TED. Or give it a try right in the Apple Podcasts app. It's the TED Radio Hour from NPR. I'm Anoush Zamoroti. On the show today, how our brains remember.

We are spending the hour with Lisa Genova. She's a neuroscientist and an expert in memory and brain function. Thank you so much for being here, Lisa. Welcome back. That's my pleasure. So let's talk about one of the ways, very unique ways that you have found to make neurological disease really relatable novels. How would you describe your sort of netheral disease. niche genre that you've created. Yeah, it's, I'm a neuro-novelist.

Yes. I think that there's a special sort of taboo for anything going on with humans from the neck up. So if you've got a neurodegenerative disease, if you have autism, if you have bipolar disorder, if you have ALS, Alzheimer's, Huntington's, anything going on from the neck up, people, People get uncomfortable with you. I think society as a whole isn't really familiar with those issues. And so as humans, if we're not familiar with something, I don't have the language and the familiarity to understand what's going on with you. I get uncomfortable really fast. And the quickest way for me to relieve that discomfort is to look away.

And so if we're talking about Alzheimer's and you have Alzheimer's and I don't quite, understand what's going on with you. It's made me uncomfortable. And I look away. Well, I've just turned my back on you and 50 million people worldwide. Wow. And unless, if we're talking Alzheimer's, unless this impacts me or my family directly, certainly not going to read the Journal of Neuroscience, I'm not going to read a nonfiction book either. I'm not going to pick up a memoir, but I might read a novel, right? And even more so, I might see a movie. So if I've just found that fiction and narrative story, this is the way to reach the most people. So let's talk about for people who may be, I feel like a lot of people are like,

oh yeah, she wrote that book. It's your first book that came out in 2007 called Still Alice, which was turned into a movie that won Julianne Moore and Oscar in 2015. And this is about a linguistics professor who has. early onset Alzheimer's. And she feels really alone in the illness because, as you say, it's like it's hard to explain what it feels like, especially if you're starting to lose your language. But there is a moment in the film version when her adult daughter asks Alice what these early symptoms are like. Like, what does it actually feel like?

Well. it's not always the same. I have good days, bad days, and on my good days, I can, you know, almost pass for a normal person. And on my bad days, I feel like I can't find myself. I've always been so defined by my intellect, my language, my articulation,

And now sometimes I can see the words hanging in front of me and I can't reach them and I don't know who I am and I don't know what I'm going to lose next. Sounds horrible. Thanks for asking. That scene is just an amazing scene. I really appreciated hearing her describe how unpredictable the disease feels during those first stages. Was this scene based on something that someone told you? Yeah. When I was doing the research for Still Alice, and I came to know 27 people living with Alzheimer's who are still in the earliest stages or early enough that they could communicate what it feels like to live with it. And people tend to think that it's, well, you start to lose access to your memories and your history and who you are, and it's like the flip of a switch and that it can never return.

But it comes in and out. It's more like my friend Greg O'Brien, who has Alzheimer's, he's. says it's like you're in the basement doing laundry and someone flicks the lights off because they don't realize you're down there and it goes dark and you're waiting and you're waiting and you're hoping that someone will realize that you're down there and turn the lights back on and someone does and and so that's when everything comes back online but you don't know if someone's going to you know is someone going to realize you're down there or is like are the lights going to stay off for good so what do we know now because we've been hearing about Alzheimer's for decades now but what do we know in terms of how the disease works and what happens in the brain? Because we do know a lot more, right?

We do. Okay. So we know that for many reasons, we can build up a protein called amyloid beta in your brain. A lot of things can lead to this buildup. Things like not getting enough sleep, a poor diet that leads to anything that is bad for your heart will also be bad for your brain and that it can also lead to increases in amyloid. So if you have, if amyloid is building up in your brain, it's a sticky protein and if it binds to itself, it can form amyloid plaques. And we think it takes about 10 to 20 years of amyloid plaque accumulation in your brain that ultimately will lead to a tipping point. And it will trigger a molecular cascade that leads to something called neurofibrillary tangles. And these sort of choke off the highway transportation system of your neurons. and it will cause neuroinflammation where your brain is trying to solve the problem, but it can't,

and then it leads to cell death. This is Alzheimer's. When it reaches the tipping point and it trips this molecular cascade, that's when we start to experience the symptoms of dementia. Can I just ask you, you just use the word dementia? Can we use those two things interchangeably, Alzheimer's and dementia? So they tend to be used interchangeably, but they're not the same thing. So dementia is a symptom. It's not a diagnosis. The dementia is a term that means you have an impairment with memory, language, and cognition that is out of proportion to your age and education level.

Got it. And it can be a symptom due to many things. So you can experience dementia due to chronic sleep deprivation to a B-12 deficiency. It could be due to vascular dementia or a stroke. It could be due to frontotemporal lobe dementia. So there are lots of reasons why you can have symptoms of dementia. With Alzheimer's disease, dementia is the hallmark symptom. You talked about earlier what memory loss is normal, but what is not normal?

What are some of the sort of signs that maybe this is worth getting checked out? Sure. So we all have the, where did I put my phone? Where did I put my keys or my glasses? If you find your keys and they're on the hallway table and you were in a rush, oh yeah, I was in a rush and I didn't pay attention to where I put them. So now all of you listening will have that moment of recognizing like, oh, yes, I did not pay attention to where I put them. And this never even involved my memory.

That's normal. But if you find your keys in a place that's strange that doesn't make any sense, like you were actually thinking this is where keys go. Like, oh, you find them in the refrigerator or you find them in their microcontradictory. or you find them in their microwave. That's strange. If you find your keys and you're looking at them and think, I don't know what these are for. That could be a problem.

If you drove your car and parked in a garage, and again, you didn't pay attention to where you parked because you were texting, you were talking, and then you get back to the garage and you're like, I can't remember if I'm parked on level three or level four. Well, that's normal. You weren't paying attention. If you have Alzheimer's, it will be,

I can't remember how I got here. Or you could be standing in front of your car and you don't recognize it as yours because you don't remember what your car looks like. The words that go missing when you have Alzheimer's, it's going to be common nouns and dozens of times a day. So, you know, a 25-year-old might have three to four tip-of-the-tong words a week, and that's totally normal. It does increase as we get older. I'm 52, and I notice that I have more tip of the tongues. But for someone with Alzheimer's, it's going to be dozens of words. a day that go missing. It's like, oh, the thing, the thing that, you know, you put in your mouth

to wash the teeth. A toothbrush? Yes. Your first TED Talk, which you gave in 2017, it's called what you can do to prevent Alzheimer's. But you say, don't be in denial. And you open your talk with a pretty, hmm, terrifying statistic. Let's project out into the future. and let's imagine that we're all 85. Now, everyone look at two people. One of you probably has Alzheimer's disease. All right, all right. And maybe you're thinking, well, it won't be me.

Then, okay, you are a caregiver. So if we're lucky enough to live long enough, Alzheimer's appears to be our brain's destiny. But maybe it doesn't have to be. What if I told you we could change these statistics, literally change our brain's destiny, without relying on a cure or advancements in medicine? The likelihood of developing Alzheimer's

is a combination of the genes that you inherited from your parents. Nothing I can do about that. And how you live. Whoa, there's everything I can do about that. So that how you live is it's sleep, it's diet, it's exercise, it's managing stress, it's staying socially and cognitively active. Those are the things that can help you clear away the amyloid, keep you from getting to that tipping point, keep you from developing Alzheimer's.

And what about preventive medicine or medical intervention? What's the latest? So it's really hopeful. I mean, we're not there. and everybody wants the home run right away. Everybody wants the magic pill yesterday. There are companies, lots of companies, spending a lot of money and decades

on developing a compound that targets amyloid that will clear this protein away so it doesn't develop into plaques and never reaches that tipping point. It's a great strategy. It's not simple. And there's mixed data on them. Some of it's really promising and some of it's not.

But I would say overall, I'm really excited about the promising data because it's showing proof of concept that if you're at risk for developing Alzheimer's, if you have elevated levels of amyloid, that you can take a drug that will prevent your amyloid levels from your amyloid plaques from becoming too high, and that will prevent you from developing Alzheimer's and symptoms of dementia. So you mentioned that lifestyle contributes to our likelihood of getting Alzheimer's, but there's also the genetic component. If you have a certain gene, A-PoE4, it increases your risk. And that is something that we can now test for. And there's this scene in Still Alice, where Alice is telling her children that she has the disease and warning them that one day they might develop it too. The thing is that the type of Alzheimer's I have is very rare. It's familial. It's passed on genetically.

Oh, my God. We believe that she got it from her father. And, of course, we're very worried about the three of you. Now, there is a test you can take, but it's completely up to you whether you want to find out or not. I'm sorry. Lisa, what is the benefit of knowing you have this gene? Like, how does it change behavior? The reason to know, there's a few reasons.

One is I can enroll in clinical trials if I have an APOE4 gene. The way to solve Alzheimer's is for people to be in clinical trials. And we want people who don't have the disease yet. Because if I already have Alzheimer's, I've already reached the tipping point. I've tripped the molecular cascade. So I've got tangles and neuroinflammation and cell down. the drugs that we're trying to develop to stop Alzheimer's are like blowing out a match, right? So if you think of amyloid plaques as a lit match, the drugs are aimed at blowing the match out,

which is a great strategy. But if my brain is already on fire, blowing out a match is not going to do me any good. So we want folks who are predisposed to developing Alzheimer's to be in the clinical trials. So that's one reason to know if you're someone who could be part of the progress that's going to lead us to the cure. and to preventative medicine. The other is I can do something about it. I think that knowing you have an increased risk with an APOE4 gene gives you more motivation to live a brain healthy life. And so, like, actor Chris Hemsworth.

Yeah, I was going to ask you about that. So he plays Thor on the Marvel movies, and he's phenomenal, and he's, you know, so fit. But he just disclosed very publicly on his show Limitless. that he has two copies of APOE4. So he has a 10 to 12-fold increased risk of developing Alzheimer's. You know, you're, I don't know, you're constantly thinking you're going to live forever, especially as a young individual. And then to all of a sudden be told,

all this may be the thing that might take you out was like, whoa, kind of flawed me for a minute. The idea that I won't be able to remember the life of experience, or my wife, my kids. This is probably our biggest fear. And when you have that, it's probably younger. It's not, you know, 85. The symptoms would likely show up sooner than that.

And he's 39. So he is now arranging his life in such a way that he can do the things, everything he can, to tip the scale in his favor. And he might never develop Alzheimer's if, you know, hopefully he does all the right things. So, okay, one of the things he says he's doing is not taking movie roles that are too stressful. I mean, if someone said to you, look, I have the gene, should I rearrange my life around mitigating this disease? In some ways, sure. Like, so one of the things he's doing, it sounds very smart to me is like, wow, if I'm going to take a movie role that's going to require me to live alone and not see my family for months, I'm going to not get enough sleep.

I am going to be, you know, just really anxious and stressed out and not be able to cope with that well. Those are all things that are going to contribute to elevating his amyloid levels potentially. So we want to get seven to nine hours of sleep a night. We want to be less reactive to chronic stress. So things like yoga, meditation, mindfulness, like being able to not get hijacked by the stress response. We want to be able to eat healthy, so heart and brain healthy diet is a Mediterranean or mind diet. We want to exercise every day.

So he's got that in spades, but for the rest of us, it's, you know, at least a 30-minute brisk walk five times a week. And we want to stay socially and cognitively active. So being around people, people we care about, is good for our emotional well-being and it's good for our brains and learning new things. So it sounds like you're saying. Okay, genetic testing, great. Research is moving forward.

People are optimistic. But the reality check is if that one out of three people at the age of 85, maybe one out of two, are going to get Alzheimer's and more and more people are living into their 80s and beyond, we need to think very hard as a society about how we care for each other. Yeah. So caregiving is another massive issue falls primarily to women. I mean, Alzheimer's also falls primarily to women. Two out of every three brains with Alzheimer's is a woman's brain. Two out of three caregivers are women. So this disease disproportionately affects women.

This disease is expensive. It's emotionally grueling. It's spiritually grueling. And, you know, we are 50 million people worldwide. right now with Alzheimer's and our population is aging. We have baby boomers aging into, you know, 65 and older. They're right there now and it's getting bigger. And we want to match our brain span to our lifespan because you don't want to spend the last 20 years of your life, not being able to remember the things you love. In a minute, more from neuro-novelist Lisa Genova on keeping a healthy

perspective when it comes to neurological illnesses. I'm Manus Zamoroti, and you're listening to the TED Radio Hour from NPR. We'll be right back. It's the TED Radio Hour from NPR. I'm Anoush Zamoroti. On the show today, memory and the brain. My guest today is Lisa Genova. She is a neuroscientist and the best-selling author of Still Alice. Hi, Lisa. Hi, Lisa. Hi, Manish. So, Lisa, you, you as we mentioned, you just came out with your first non-fiction book, Remember. But you've written five novels, realistic fiction about brain health and various neurological conditions. And the most recent book is called Every Note Played. Tell us about it. Because my understanding is this book came from a pretty personal place for you. Yeah. So

Every Note Played is about a concert pianist with ALS. It's also called Lou Gehrig's Disease. in the U.S. I chose to write about ALS because Richard Glitzer, who was the co-script writer and co-director of Still Alice, was diagnosed with ALS just a couple of months before he read my book and agreed to become the writer and director and made the very heroic decision to spend what would be the last days of his life working on this film.

So rather than traveling the world, or circling the wagon, staying close to home with friends and family, he decided to make one more film. Wow. And so I got to witness him on set, and he, his ALS, so ALS is a motor neuron degenerative disease

and you become increasingly paralyzed. So all the voluntary muscles of your body become inaccessible to you because the neurons feeding them die. And his was called Bulbar ALS. So it began, the disease began in the motor neurons that feed his head and neck first. So he could still walk. He wasn't in a wheelchair on the set, but he couldn't speak.

And he was directing by typing with one finger on an iPad. And it was remarkable and amazing. And I asked him if I could write about ALS next in his honor. And would he be the first person to teach me a bit about what it feels like to have it? And he agreed. And my last emails with him, he was typing with his right big toe. Wow. So I learned a lot, I know I learned a lot from him.

But that was a tough one. Eight of the 12 people I came to know with ALS died before I finished the first draft. So this disease is fast. It can be very fast. The average life expectancy following diagnosis is, I believe, three years. Whoa. I mean, because I always think of the most famous person. to have it, which was physicist Stephen Hawking, who lived with it for over 50 years.

Right. But he wouldn't have, right? So he had, he had an intervention to keep him alive. He had a tracheosomy surgery and was put on 24-7 ventilated life support, which requires 24-7 ICU-level nursing care to maintain because there's a lot that goes on with making sure that, that breathing's machine and all that goes on works. So it's only like 3% of folks with ALS choose to and have the means to continue to live on life support. You make all of that. I mean, it's, it's hard to talk about. It is really hard to talk about. But you make it, I don't want to say a pleasure to read, but it is a pleasure to read because you feel that you're inside someone's head in your book. Yeah. And I think the reason.

that the books aren't overwhelmingly depressing or aren't tragic? So people don't live the tragedy of their diagnosis 24-7, right? So these stories, again, it's about demystifying, destigmatizing, and humanizing. So it's the human story. And so it's, you know, I've found that in studying these neurological conditions and in telling stories about people living with neurological conditions, it's telling the story of our shared human condition. Yeah. So that's where it resonates. It's, oh, this is not my story, but I can feel it. And I can understand as a human being what it would feel like to walk in those shoes. I wonder if you wouldn't mind reading a passage where Richard, he's a concert pianist, has been diagnosed. And it's a moment where he's thinking about. what lies ahead of him?

Richard did the math. The average duration of this disease is 27 to 43 months, so he stands to gain about three months of life on Reluetech, a single bonus season. According to his most optimistic calculations, he won't see his 50th birthday. Not necessarily, people say. Look at Stephen Hawking, they say.

Sure, the disease will paralyze every muscle he owns but for those in his intestines and his beating heart, but he could live on artificial ventilation for 30 more years. This is the hope people want him to adopt, the inspirational speech aimed to fuel his will to live and persevere. Although Richard hasn't reached a definitive decision on a tracheostomy yet, if he had to choose today, he would rather die than rely on invasive ventilation. Stephen Hawking is a theoretical physicist and a genius. He can live in the realm of his mind.

Richard can't. He looks down at his dangling hands. His world, his fascination, his reason was the piano. If he were a brilliant theoretical physicist with ALS, he might hope for 30 more years. As a pianist with ALS, he's not buying any new calendar. What I found so immediate about the book was in addition to talking about how ALS, you know, destroys a body. It also talked about all the decisions that people have to make from the person who's afflicted with it to the family members about how to live with this disease.

And I think most of us don't want to think about that. But I'm sure there are people who've read your book and thought, like, this is really helpful, actually. In some ways, it's a guide. Yeah. So, you know, for all of these diseases and disorders and conditions, the diagnosis doesn't just happen to one person, right? It happens to the entire family. Everyone who loves that person is affected. Everybody goes through the stages of grief over the life that they thought they were going to get to live, that they now no longer get to live.

and it can be confusing. And again, because a lot of these conditions and diseases are so closeted that people go through them behind closed doors and don't have the benefit of community and sort of reinventing the wheel on their own, if you see a neurologist, you might not see that neurologist again for another six months. The lived experience is happening, you know, on your own. and it can be really tough. And so, yes, the books have become resources for folks to sort of see what's ahead,

to know what's expected. I always list resources in the back of the book of places that can help. And yes, they're used in medical school, nursing school, OTPT. It's been wonderful to see that these stories can help both the people who live, the families who live with the diseases, understand. how to relate and know what to expect and for the medical community, the caregivers, to know how to better relate to the human experience and not just treat the disease, but the people with it. Is there anything happening in the scientific community to suggest that one day this disease may not exist?

And can anything be done preventively? So ALS is a little trickier. So it's about 10% of folks inherit a mutation called there's a sod one gene that can confer ALS. But for most folks with ALS, it's sporadic. So we don't really know what causes it. We don't know if anything you can do to prevent it. The folks I met with ALS were every age. So, you know, a 25-year-old in medical.

school had it, a 65-year-old vet had it, a 45-year-old, a guy my age had it. So it was all over the place. And so that's a scary thing because unlike Alzheimer's, this is one where there's not something that I can tell you to do that's going to keep you safe from developing ALS. It's one of those. We don't know why it happens. Oh, gosh. Lisa, this world, the worlds, I should say, that you submers yourself in as you write these books, you're so positive and you're so like straightforward and energetic and optimistic. How do you stay that way? How do you cope writing about all this? Well, I get that question a lot. And I think like you've read my book.

And so you know that, again, like, people who live with these neurological diseases and disorders don't live the tragedy of their diagnosis all the time. And these are folks who have enough reserve perspective to raise their hands and say, you know what, with the limited time that I have left, and, you know, we all only have limited time left. but for folks who've been handed at one of these diagnoses, often really the clock is very much ticking in their face, that they've offered to spend some of that time with me. And so these are remarkable people, like really generous people,

who are offering to help me understand what they're living with in the hopes of helping others. So they have this sense of legacy and contribution. So I learn not just about, the disease that I'm writing about, but I learn so much about how to be a better person from each of the stories that I write about. So these stories aren't just about neurological conditions. They're about our shared human condition. So I'm learning about unconditional love or redemption and forgiveness or identity, how people matter. So it's been such a privilege to know all of the

people have come to know in writing these books. I'm meeting them often at the most vulnerable, scary times of their lives. And we get to know each other in a way that's very real and unguarded, right? If you think about your everyday conversations, a lot of us walk through our days saying, how are you? I'm good. Are you good? Good. Good to see you. Right? We do a lot of that. Whereas the conversations I have with people, the book I'm writing right now is about a woman with bipolar disorder, people are not coming to me with that armor up. And they're not telling me they're good. They're telling me all of it, the good, the bad, the ugly. It's very real.

It's a very real human relationship where I have the honor of getting to know someone. And that feels good. Like to connect with another human being in a very real way, I think is why we're here. And I'm very lucky enough that a lot of people have raised their hands and said, I will show you my real self and let you share that with others. It's really an honor. I'm sure there are, though, people listening to us in our conversation and thinking all of this getting real is freaking me out. what's your message to them? Well, I don't know.

I don't know if it should be freaking them out. I mean, people live with things, right? So there are over 6 million people in the U.S. with Alzheimer's. There's more than that who have bipolar disorder. There are people in your neighborhood who have autism and Huntington's and ALS. And so this is what people are living with. And so to not know anything about it, I think it just, it's, I think the more we understand about each other, right?

Like the more, and I focus on neurological issues, but I mean, this can extend to anything. As long as we otherize people, then we stay separate and that doesn't feel good. It's not good for any of us, right? So if you have Alzheimer's and I've otherized you, like, well, you have Alzheimer's and that's different from me, so I'm safe from you and you can just stay over there, I feel bad for you. That's sympathy. but you're different from me. Well, that doesn't help us as a world.

Like if I can have empathy for you, right? If I can feel with you instead of for you, then I am not otherizing you anymore. I'm collapsing that distance, that emotional distance between us, and I can imagine and feel what it might be like to be you. And that shouldn't freak people out. The freaking out is, oh my God, you're different than I am,

your other, ah, you're dangerous. I feel afraid. But if I can see our common humanity, if I can see you as a human being struggling with something and I can feel with you what that might feel like to live that, then that's not scary. Lisa, not to be flip, but my final question, like, if I forget everything you told me this hour and I just remember one thing, what should it be? That's such a great question.

I'm going to give you two things. I'm going to say, let's say you had Alzheimer's. Let's say you have Alzheimer's and you are going to forget everything that we talked about in this hour five minutes from now. You're not going to even remember that you met Lisa Genova. That doesn't mean that this conversation didn't matter. That doesn't mean you didn't enjoy the conversation. That didn't mean that I didn't enjoy the conversation. That didn't mean that we didn't share something together.

So I think that for a lot of people who know and love someone with Alzheimer's, there's this sense at some point that, well, you know, dad doesn't remember me anymore. And it's so upsetting and so sad. And his short-term memory is so short that even if I go visit him, he's not going to remember that I was there. So I don't know. I feel awful about this, but, you know, what's the point? And it's, you're right. He might not remember who you are anymore. And he might not remember who you are anymore. And he might not remember. remember what you said while you were there, but he'll remember how you made him feel. Right. So our emotional memories are not the same as the memories as we're used to thinking of them. Alzheimer's does not steal, thankfully, it does not rob our ability to feel all of the human emotions. So it will never take away your ability to love and feel loved. The other thing I'd love people to take away is that you have agency over your brain health. So just like the rest of your body, you have an influence over the health of your brain and your memory. And there's lots you can do to take care of it. So keep that in mind every day with your sleep habits, you're eating,

your exercise, you're managing stress and learning new things. Lisa Genova, thank you so much for this wonderful conversation. Oh, you bet. It's been fun. Thank you, Minish. Lisa Genova is a neuroscientist and the author of Still Alice, Every Note Played. And Remember, the Science of Memory and the Art of Forgetting, along with several other books. You can see both of her talks at TED.com. Thank you so much for listening to our show this week. This episode was produced by Rachel Faulkner White and edited by Sanaz Meskampur.

Our production staff at NPR also includes James Delahousie, Katie Montalione, Andrea Gutierrez, Matthew Cloutier, Fiona Giron, and Catherine Seifer. Our theme music was written by Romteen Arablewee. Our audio engineer was Gilly Moon. Our partners at TED are Chris Anderson, Colin Helms, Anna Feelein, Michelle Quint, Jimmy Gutierrez, and Daniela Ballerzzo. I'm Anoush Zamorodi, and you have been listening to the TED Radio Hour from NPR.