Bestselling author Lisa Genova and Mayo Clinic neurologist Dr. John Caviness join us to explore the emotional and medical complexities of Huntington’s disease through Genova’s novel Inside the O’Briens. The conversation delves into the science behind the disease, the complicated question of genetic testing, and the profound psychological toll on families. With powerful insights into caregiving, resilience, and the healing potential of storytelling, this episode is both a heartfelt tribute to those affected by Huntington’s and a compelling call to action for awareness and empathy.
Bestselling author Lisa Genova and Mayo Clinic neurologist Dr. John Caviness join us to explore the emotional and medical complexities of Huntington’s disease through Genova’s novel Inside the O’Briens. The conversation delves into the science behind the disease, the complicated question of genetic testing, and the profound psychological toll on families. With powerful insights into caregiving, resilience, and the healing potential of storytelling, this episode is both a heartfelt tribute to those affected by Huntington’s and a compelling call to action for awareness and empathy.
This episode was made possible by the generous support of Ken Stevens.
We talked with:
Purchase “Inside the O’Briens.”
Learn more from the Huntington’s Disease Society of America
Got feedback?
Dr. Denise Millstine: Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic today is Huntington's disease and our book is “Inside the O'Briens” by Lisa Genova.
I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine. I am so excited to welcome Lisa Genova back to the show. Lisa is a New York Times bestselling author of several books and has degrees in neuroscience from Harvard and bio psychology from Bates College. Her TED Talks on Alzheimer's disease and memory have been viewed over 11 million times. Lisa is a true phenomenon in popular culture and brain health.
Lisa, welcome back to the show.
Lisa Genova: Denise, thank you so much for having me back.
Dr. Denise Millstine: Dr. John Caviness is a professor of neurology at Mayo Clinic College of Medicine and Science and a consultant in the Department of Neurology at Mayo Clinic in Arizona. His clinical practice focuses on movement disorders such as Parkinson's disease, Mayo Clinic and Huntington's disease. John, welcome to the show.
Dr. John Caviness: Thank you. My pleasure to be here.
Dr. Denise Millstine: “Inside the O'Briens” is a modern family's story set in Massachusetts. Boston cop Joe O'Brien is a Red Sox loving family man with a spunky wife, Rosie, and four young adult children when his odd behavior is noticed by a colleague. After evaluation and testing, Joe is diagnosed with Huntington's disease, an inherited neurodegenerative progressive movement disorder that we're going to learn more about today.
So you both know how “Read. Talk. Grow.” works; we discuss books that portray health topics in an effort to better understand health experiences. In this case, one that maybe many people are not quite as familiar with. We explore these experiences through story and today we're going to be talking about Huntington's disease. So Lisa, as mentioned, you already joined us on Read. Talk. Grow. to discuss your 2025 release, “More or Less Maddy,” where we talked about bipolar disorder in episode number 46.
Thank you again for that amazing conversation.
Lisa Genova: Oh thank you. It was one of the first conversations I had for that book tour, and it remains my favorite.
Dr. Denise Millstine: Well, thank you for that. While I was preparing for that episode interview, actually, I reconnected with an old friend. Her name is Candace. She's a hockey mom with me, and I was telling her about the podcast and she said, you know, my family has a history of Huntington's, and I've read this book many years ago, and it was the first time I saw my family's experience reflected in a novel. And let me tell you, that was enough of an endorsement for me. I knew you and your work, and I said, we have to talk about this book to honor these families who navigate this really difficult, difficult disease. So I wonder if you'll tell us your inspiration for writing this book. Now, many years ago.
Lisa Genova: I know. I was writing this book back in 2013, 2014. It was published in 2015. So it's, you know, over ten years ago that I was really embedded in the Huntington's community and learning from them. I wanted to write about Huntington's. Well, first, my background in neuroscience is what excites me, and I am committed to a career of writing stories about people living with neurological diseases and disorders, mental illness, anything going on in the brain that renders folks ignored, feared, misunderstood, alienated, isolated for what's going on in their brains. Because story is great, super powerful way for people to get educated from a place of empathy and compassion. So you learn not just information intellectually. You learn how to feel about these folks. The lived, felt experience.
And so at that point in my career, I had written about Alzheimer's, traumatic brain injury, and autism. And I had it. I had generated a bit of a following, and I wanted to write about Huntington's because I knew about Huntington's as a neuroscientist but I recognized that most people didn't. And I thought that maybe this would be a chance to raise some much needed urgent awareness around this illness. That doesn't affect as many people as Alzheimer's, say. So. Like I think right now in the US, we have something like 7 million people diagnosed with Alzheimer's. And at any given moment, the prevalence of Huntington's is usually around 40,000 in the U.S.. So if you're a drug company, what disease are you motivated to go after? The market potential for Alzheimer's is, of course, much more. And so Huntington's, at least in terms of research, gets less attention.
And then just personally, I was 22 years old. It was my first job out of college. I was working as a lab tech at Mass General East in the Charlestown Navy Yard. And this is why I set the book in Charlestown as a nod to what I'm about to share. I was doing research on the molecular neurobiology of drug addiction, but the research building used to be a building that they housed…the naval ships could come in and be cleaned on the interior. It was all balconies and so the length of this building is massive, and they never walled and often made separate rooms, if you will, like the lab benches or it's the length of the building and it's just lab bench, after lab bench, as far as the eye can see.
And so it was February of 93 when all of a sudden some neuroscientists, many, many lab benches down, start screaming and celebrating and crying and cheering and like, so, you know, I probably had my pipette midair and stop. And we all are sort of like, what's happening? Like, neuroscientists don't behave this way. And the news trickles down that those neuroscientists had just isolate the genetic mutation that causes Huntington's.
Dr. Denise Millstine: Wow.
Lisa Genova: Yeah, so I'm 22. I'm an aspiring neuroscientist. I get full body goosebumps. I recognize that this is a historic moment in all of science, and I somewhat naively jumped to the next thought was, oh my God, there's only one thing that causes Huntington's. It's this genetic mutation. They've just isolated it going, they're going to cure this disease. And while that's still the hope, knowing that genetic mutation is necessary for getting us to a cure for this disease. We are all these decades later, and we still don't have that. So I want that's why I wanted to write the story, is to let people know what Huntington's is and how close we could be to solving it if we had maybe some more attention on it.
Dr. Denise Millstine: That's so fascinating, talk about being in a really remarkable place at such a time. How interesting. John, tell us your impression of the book and also what it's like to work clinically with patients affected by Huntington's.
Dr. John Caviness: Sure. Well, first of all, for me, I thought the book was excellent. So really, Lisa, you know, congratulations again. And I thought that for, you know, a couple of different reasons.
First of all, those of us in medicine, when we see a disease portrayed, it's not uncommon for it to be kind of overplayed or overdone or dramatized or something like that. And in this book wasn't like that at all. I mean, I thought it was very real. It was very accurate. You know, and after 33 years of taking care of patients with Huntington’s disease, it was like, you know, this is what I lived for the last 33 years. That was very impressive to me. And I wasn't, you know, prepared for quite that.
You know, the second thing I would say is that, you know, the book excellently portrayed Huntington's disease as a family affliction. Now, you can only say, you know, one person in a close family gets a disease or condition, of course it affects everybody else. But for me, in Huntington's disease, the family is affected in a much more intense way than just simply having a member of that family afflicted with a certain condition or disorder. It truly is a family affliction or a family disease in the very intense way. And I thought the book did an excellent job of portraying that.
The third thing I would say is that at the end of the book, I thought was, you know I'm not trying to shower you, Lisa, with compliments, but at the at the end of the book, I thought it was very well done because at the end Katie makes a decision that she wants the test results. But the book ends right there. And so the readers never really told her the test results. But I hope readers would realize that, you know, the test result doesn't matter. What really matters was Katie’s journey to get to that point, and that was so excellently portrayed, is that, you know, I thought that was just, you know, extremely, extremely well done.
Lisa Genova: Oh, thank you so much. Yeah. There were a fair number of readers who were angry with me for not telling them what her gene status was. Like whether she was positive or negative for the mutation. And what you are just articulating is exactly the point. Like for Katie, her journey was recognizing that she's at the beginning of her life and she's going to live it and whatever is going on inside her, she doesn't have a disease now. She might someday. But like all of us, we don't know what the future holds in our genetic predispositions and what will happen. So for her, it was getting to the point of I don't need to know. I'm still I'm going to make the choices I'm going to make regardless of what that outcome is.
And I had also given the reader other examples from her siblings of what it's like to sit across from that genetic counselor and get a gene positive result, and what to do with that, how it affects the family dynamic between siblings. I talked to a lot of folks who didn't want to know. So we're now talking about like, if your mom or dad has Huntington's, each kid has a 50/50 shot of inheriting the mutation that will 100% cause Huntington's. And because of that discovery in 1993, in the Charlestown Navy Yard, there's a blood test where you can just go and get a simple blood draw, draw and find out if you've got the genetic mutation that will give you Huntington's. And so the generation at risk. So all of the kids of this family are saddled with this really daunting question of, do you want to know?
And I went into the research for this book, kind of feeling black and white about it. I thought, well, I'd want to know. You know, information is good, and then I can plan accordingly, and then I can get involved in clinical trials if I'm gene positive. And that's sort of just how I would approach it.
But as I talk to all the people I talked with, I recognized how gray this is, that there is no black and white, and there are very good reasons to find out. There are excellent reasons not to find out. You might not want to find out now, but you may want to find out in five years, you know. Are you about to start a family? Are you about to go to medical school? Would not knowing make you symptom hunt every day? You'd be anxious every time you dropped your spoon or fumbled a word or tripped over your own shoes. Could you live with not knowing? It's complicated.
And so I did want to show that dynamic among the siblings, which is why I made this in some sense. I made this family an Irish Catholic family from Charlestown. There's four siblings, all in their 20s, who all have to wrestle with this tough question of, do I want to know?
So yeah, I have two of them want to find out and how that impacts their lives immediately, even though they do not have Huntington's now. And then one sibling chooses not to know and then there's Katie and we don't know her answer.
And interestingly, some of the folks I interviewed like the family where this one woman was the only member of her family who's gene negative. And you think that must feel amazing to be her. She's off the hook. And there's so much survivor's guilt. So knowing this information, there's a double-edged sword to this.
Dr. Denise Millstine: John, I wonder if you'd slow down some of that genetics and talk about why in this condition, particularly the testing, is something that a young adult would consider in terms of when the disease manifests and how having the gene mutation might not necessarily be the same thing as having Huntington's yet. Sort of restating what Lisa's talking about, but could you give us even some more details or slow that down a little bit.
Dr. John Caviness: I'll try it. Although Lisa was pretty good. So you the last time that was presented to me, we know the vast majority of those that are genetically at risk choose not to be tested at that given time. And as Lisa suggested, it is a tremendously personal decision. My role as the, you know, the doctor taking care of that family really is to be supportive, number one. And number two is to make sure they're properly educated. And this is a very useful role for genetic counseling.
Genetic counselors, as was portrayed in the book, do a very excellent job of taking the person through the education. Taking the person through the thought of testing and what it means and how it affect them if they were positive, how it affects them if they're negative.
Another point to draw, I think, and Lisa, you know, mentioned a little bit about this, is that we know that people who are genetic at risk for Huntington's disease, that they have an elevated prevalence of depression and anxiety, whether their gene negative or gene positive.
So being in a family with Huntington's disease has those effects before you know the result. And that's you know, and that's something that, you know, we have to keep in mind. People have a variety of reasons for being tested or not being tested. Sometimes it's life planning. Sometimes it's family planning. Sometimes people state, well, there's no treatment right now, so there's no point in being tested. And you know, our job is to respect that. So our job is to respect it, whether they choose to be tested or not to be tested.
And personally, you know, I know probably not into this part yet, but personally, you know, I'm very optimistic. I think there is going to be a treatment for Huntington's disease in not too far distant future. It's not today obviously, more work needs to be done. But when that happens, and I'm using the phrase when that happens, everyone's going to want to be tested because it will make a difference in their lives and their family's lives and that would be disease modifying.
Dr. Denise Millstine: That's such a remarkable point. So we're having this conversation in 2025. The book was published in 2015, where there was not a cure or there still is not a cure. But should that change, then the decision for testing certainly will have at least another dynamic to it. And I agree, Lisa said this so well, but I'm just going to hammer down for our listeners who don't have a background in genetics and health care that Huntington's is caused by what's considered an autosomal dominant gene mutation.
So that means if one of your parents has it, they have a 50/50 chance of giving it to you. And then if you have it, the penetrance, meaning how likely it is to manifest and disease at some point in your life, usually in middle age, the likelihood that it will manifest is almost 100%.
So this is very different than what we talked about with BRCA mutations, for example in another episode, where the penetrance is not 100%. And so this is very much a, if you have it, you will manifest disease at some point.
So let's talk about what that disease actually looks like. So Lisa, I think many people who know anything about Huntington's think about chorea, which is this uncontrollable movement that can sometimes be misinterpreted as somebody being clumsy or not paying attention or even drunk. But actually, the first symptoms you depict Joe as having are cognitive symptoms. He's a police officer, and he can't find his gun getting ready in the morning. And also mood symptoms, this unprovoked or overblown rage at these small things. Why did you start with those symptoms?
Lisa Genova: Because that's what I was hearing from in the families. Right, interestingly, like that hallmark symptom of Huntington's when it's full blown into the disease is this loss of control of voluntary movement, a lot of involuntary movement. This like Huntington's chorea, was the original name and chorea means dance in Greek. And I tell folks, if you haven't seen someone with Huntington's, interestingly, probably a couple decades ago now, Michael J. Fox, even I think in his documentary on Parkinson's and he's being treated for Parkinson's. It's if you sort of you want a treat for Parkinson's, which, you know, you're become rigid in your movement and unable to have that fluidity of movement, involuntary eye movement. And if you're taking medication for it, the ideal dose would get you to just be naturally fluid. But if they overshoot a little, or if he starts to develop some tolerance to it, he's kind of all over the place in his seat.
And so people with Huntington's sort of move a lot and their face twitches a lot, they might fall out of their chair. So that's the hallmark symptom. But that's not usually the first presentation is what I was hearing from most folks. And it's only in looking back that they can see this, what they call a prodromal period, which is these more cognitive and behavioral and emotionally driven symptoms. So executive function problems. So they're having problems planning, problem solving, making decisions. So they're making mistakes. And you know, where did I how did I organize myself. Like where do I put my stuff.
And like they're late for work because they can't process the steps properly to get out of the house and to get to work on time. Explosions of rage. Paranoia. There's, the person was just sort of acting uncharacteristically blowing up and or just like, late for things like, I can't count on this person. And so people would chalk it up to a character flaw like, oh, he's just being a jerk for a while. So it's in looking back that folks often said, oh, actually, that was the beginning of the disease. And it can be 10, 20 years before you start to see those obvious symptoms of chorea.
Dr. Denise Millstine: Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate “Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.
Dr. Denise Millstine: John, is that what you see in your practice? About what age do you start to see people come in with clear symptoms, and are there other symptoms we haven't mentioned yet?
Dr. John Caviness: Yeah, no, I see and I think you know what the literature says. I mean, it's middle age, 45 is an average, but there's quite a lot variation. But to build on what Lisa was saying is that the symptom onset is so insidious, to the point where people don't necessarily think that something's wrong.
Uncle Joe is a little fidgety. You know, he's just, you know, he's been that way as long as I've known or, you know, somebody has a temper episode and it's, well, you know, he was just John was just having a bad day. You know, so lots of other explanations for things until it gets to a point where it happens to a greater degree, or it happens more often, that view the family or the person themselves thinks it's time to come see, you know, a doctor or neurologist. But it's very insidious. It's very slow.
Lisa Genova: I will say also that people also talked about self-medicating. So a lot of times someone will notice that something is strange about, you know, I'm more fidgety than I used to. I'm dropping things and maybe my job requires me not to drop things. And it's like things are going wrong a little bit and it's worrisome. And so maybe people start drinking a bit to sort of anesthetize, self-medicate, and then people assume that you're maybe, you know, you're slurring over some of your words a little or you're being more clumsy or the explosions in temper are due to the alcohol. So there's, sort of misdirection in what's the root cause for a bit where people just assumed it was a drinking problem.
Dr. Denise Millstine: Well, and tragically, this is what happened to Joe's mom. That he realizes in the course of the novel that he's been told this story that his mother drank herself to death. And as he starts to manifest symptoms and speak to a neurologist, he realizes she had undiagnosed Huntington's, which is so heartbreaking. And you do have several characters…for example, Joe eventually has to tell the department, the police department what's going on beyond just the couple trusted friends. He has to tell his supervisor because there are people calling in saying there's a drunk police officer directing traffic.
So I think you're right. That there's this manifestation that could be interpreted as being somebody having been drinking alcohol. But then also because of the twitchiness might get suppressed by drinking alcohol, and so there might be sort of a combination going on in there. But how tragic about his mom.
Lisa Genova: Yeah, and not uncommon if you look a generation back. We didn't have as many physicians who had ever seen Huntington's. Again It's not that common of an illness. So some wouldn't really know if it came across especially early on. And yeah, we just do we do a much better job today of recognizing Huntington's and knowing how to treat people with a little more dignity. But yeah, a generation ago it was, mom went mom went crazy. They put her in a mental institution. They put her in the state hospital.
Dr. John Caviness: Yeah. And I would even go as far as to say, perhaps a generation ago, you know, misdiagnosis was often the rule rather than the exception. It's much better now. But part of that misdiagnosis would be set by that Huntington's disease within families just wasn't talked about. It was not a condition, that, you know, you would tell your child about or that grandma would tell, you know, the mother or father that it just wasn't really spoken out, even if they understood it to be, you know, to be what was.
Dr. Denise Millstine: Well and many patients with Huntington's will end up needing care beyond what they can be provided for at home. And so, not a great word, but end up, you know, a generation ago, being institutionalized because there were these outbursts and the mental health aspects and the cognitive aspects, and particularly if you didn't know what was going on, they would be placed into these care facilities. So I think that also limits historically what people have shared in families, because unfortunately, there's been shame around that as well. Again, historically.
John, you talked a bit about the mental health component to being in a family affected by Huntington's. I wonder if you'll also talk about a really difficult topic, which is suicidality, particularly in those who are aware they have the gene mutation even before they've manifested severe symptoms.
Dr. John Caviness: Thank you. We talk about it a lot with our families, with our patients, with the support groups. You know, anybody with an ear that is connected to the heightened disease community. You have to, as their physician, go over this, whether they bring it up or not, whether you even think they're depressed or not or anxious or not, you know, it's your duty to delve into it every single time and as well as recruit the family to also do the same thing for that individual family member, because it is still a big problem.
It also is a major topic for the genetic counselor, and in our protocol, as in the protocol that was displayed in the book, they a person considering genetic testing does need to talk to a psychologist or a psychiatrist. So it can be assessed where that risk is. So it's a very important part of taking care of people and families with Huntington's disease. It's a very important part of how we interact with them.
Dr. Denise Millstine: Lisa, I think this just was so brave that you took this head on and necessary, but I think a lot of writers would have ducked away from it because it is such a difficult component of Huntington's, as it was with Maddy in bipolar disorder. So thank you for always.
Lisa Genova: Thank you. And Alice in “Still Alice,” right? I mean, this is what again, I am committed to trying to tell the truth under the imagined circumstances. And so what I'm hearing from people over and over that this is a real risk, people are saying, like, I'm considering it or I have considered it. It's not something that I feel I could shy away from and still tell the truth. So yeah, it was definitely something that Joe at times wrestled with and thought, this is my way out.
And then there's, there's a part in the book that I'm really proud of that I love that, like his daughter Katie sort of comes upon him when he's suicidal. I think it's the next day she talks to him. It's been a while since I wrote this, and she says, you know, dad, we don't know how to do this. Like, you're the example, like you've taught us how to ride our bikes, how to do so many things, like we're going to look to you to see how to live and die with Huntington's and like, you're teaching us. So what is it you want to show us? And that really spoke to him. I think that that interaction and connection with his daughter really saved him in that moment in his life and allowed him to push past that and find meaning in having Huntington's right. Find meaning in living with this. As horrible as it is, you know. Can two things be true, right? Can this be horrible? And can it have meaning for my children? And can I do this as well as possible for them?
Dr. Denise Millstine: That’s really lovely and really important for Katie too, which listeners will have to read the book to find that out. John, we talked about there not being a cure yet for Huntington's disease, but there certainly are treatments, and one of the treatments that Joe begins immediately is intensive physical therapy. Why is that so important, particularly early on in disease manifestation.
Dr. John Caviness: Anybody with who has any type of problem with motor control, whether it's the hand dexterity, whether it's balance or walking, physical therapy is a must. Because what the underlying condition and is trying to do is to deconditioned the person to make their brain forget how to do movements properly, and physical therapy is number one help, if you will, with making sure that they remain their conditioning. Their brain remembers how to how to do certain movements. If that doesn't happen, it begins to be kind of a, reverberating cycle on on itself, if you will. You get deconditioned, you get less well, you're less able to mitigate the effects of the disease. So it seems like the disease is more severe and progressing faster than what it actually is. So it kind of becomes a vicious cycle. And so, physical therapy is, is extremely important to, to try to mitigate that.
Dr. Denise Millstine: I really loved how Joe was like, I don't need physical therapy. I'm not falling down that much. And the neurologist is like, this is exactly why you need it now. So that, you know, just as you said, you're offsetting the progression and you're already strong as the disease starts to move forward.
Lisa, as an integrative medicine physician, I love that you included yoga in Joe's treatment. It wasn't recommended by his physicians, but it was recommended by his daughter, who’s a yoga instructor, and brings him into the practice. You're a bit of a yogi yourself, I believe. Can you comment on the healing potential of yoga?
Lisa Genova: Yes. So I have been practicing yoga since my first daughter was born in 2000. I have loved the benefits of the practice for all of this time, but when I decided to make Katie O'Brien, the daughter of Joe, so she's at risk for Huntington's, she's the youngest of the four siblings who are all in their 20s. I decided to make her a yoga instructor.
And the book is told in two points of view. We've got Joe's point of view, and we've got Katie's and we alternate. I did that in part because, you know, we don't have biological medical solutions ultimately for Huntington's yet. And so the journey for folks a healthy journey, if you will, for Huntington's is for a lot of folks, a spiritual one. Like how do I, you know, How do I make meaning out of this? How do I matter with this? How do I live each day with this? And even for the folks at risk, like part of the anxiety and the, the ruminating can be over what's going to happen to me 15, 20, 30 years from now? What's going to happen to me later? And so yoga is a lot about presence, and it is a lot about tapping into your intuition and learning how to be comfortable being uncomfortable. It's slowing down so that you can be attending to what is. And so the lessons that Katie was learning as a young yoga instructor were both helpful to her journey, and something that she could share and connect with her father to offer him a shift in perspective that might allow him to be with his Huntington's, rather than constantly feeling in a state of fight with it.
So as a police officer, he used one of the training mantras for the Boston police is to stay in the fight. So whatever's happening, whatever they're called to, that they can't back away from it. They can't shy away from if there's a knife fight or a gun fight or there's a domestic call like they have to show up for whatever that is. So the mantra is, stay in the fight. And Katie offers him, maybe it could be stay in the pose. And we learned that in yoga that if you're asked to say, you know, stay and to make the pose of warrior one or downward dog and you're asked to hold this position, you might start to struggle physically and then you might start to struggle mentally. Your thoughts might say, what are we going to get out of this? I don't like this. I'm uncomfortable or you start thinking about what you're going to do later or like, oh my, like, you know, your thoughts can start to run away from you as well. And so the idea is, can you be comfortable being uncomfortable in that pose? Can you bring your thoughts back to, oh, I'm just here in this pose, this is temporary and this too shall pass. So yeah, I wanted some of the wisdom and the benefits of yoga to be shared from daughter to father.
Dr. Denise Millstine: I'm so glad you did and I'm so glad that it was a character like Joe O'Brien, who is practicing yoga, because you just can picture him thinking, this is not for me, and then getting so many benefits from it.
Lisa Genova: Right, right. I did a 200-hour teacher training, yoga teacher training to, you know, better know the yoga that Katie would be experiencing and walking. And also, you know, this was a Catholic family that, you know whose faith was shaken by this. You know, Rosie in particular is very religious. And she's like, how can I believe in a God who would do this to my family?
And Katie was the youngest and sort of pursuing a life that's maybe not the life that she inherited from her family. So the story is about what we inherit. And are we free to choose a life of our own making, or are we destined to live the life we've inherited?
So there's the genes we've inherited. Can't do anything about that. But we also often inherit our parents religion, their point of view, their worldview. Right where they live, the zip code, the expectation that maybe you she should grow up and marry an Irish neighbor and live in the same neighborhood and go to the same church every Sunday.
And she's the member of the family who's thinking like, well, maybe there's some other way. I also, I like the idea of like, yoga being her quote, unquote religion that she that I pictured her often with the, mala beads and focus, you know, the mala beads as a way to be present. And Rosie's got her rosary beads. And they're just two different ways of approaching a way to live.
Dr. Denise Millstine: It's really lovely. John, Lisa mentioned that we don't have biological and medical solutions for Huntington's, but we do have some medications that we use for symptom management. So if somebody's listening to this and thinking, oh, well, maybe I don't need to see the neurologist if they don't have something to offer me. But indeed, we have medications that can help with some of the specific symptoms. Correct?
Dr. John Caviness: Yeah, absolutely. And we have medications that can deal to some extent, as you say, in just a symptomatic way with the emotional, psychological, as well as the excessive movements. There's medications that can help with all those things. And so I think that's just one of many reasons to keep seeing a neurologist when you have Huntington's disease. Because there are advances in symptomatic treatments, you know, occurring every year or two. And so it's very good to, I think, to seek treatment both pharmacological and non-pharmacological treatment, whether it's physical therapy, yoga, you know, seeing a psychologist, there's a, there's a whole lot of things that can be offered.
Dr. Denise Millstine: Thank you for that. And Lisa, you end the book with a call to action. You asked readers to contribute to readers and action funds. What is that?
Lisa Genova: So I realized after “Still Alice” that if I've done my job well, that readers finish my book feeling a lot. I'm asking you to feel a lot of big emotions, and there's a lot of compassion and empathy folks feel at the end of reading the story. And then I worry that, oh, but then they go about their lives and maybe they get busy and distracted and maybe not involved.
So I wanted to try and catch people in that moment when they're done and feeling so many feelings that maybe they could then go to some, I could point them in a direction. So for “inside the O'Briens,” I point them to the Huntington's Disease Society of America and it's a website where you can donate money toward research and resources, and it's also a place where you can find more education.
So for all of the books, it's like, here's the story that I hope has given you some real education, has entertained you, and has made you feel a lot of things. And then now here's a site you can go to learn more and get involved and maybe contribute some helpful money toward, research and resources.
Dr. Denise Millstine: So if our listeners are interested, we will put the link to Lisa's website in our show notes so they can learn more about Huntington's and also other conditions that Lisa covers in her books.
I want to thank you both for being here, to have this conversation for your work in this challenging disease, and I hope we've inspired more listeners to go out and read “Inside the O'Briens” by Lisa Genova. Thank you.
Lisa Genova: Thank you so much, Denise Thank you, John. This was great.
Dr. John Caviness: Thank you.
Dr. Denise Millstine: “Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
Visit our show notes to see the books discussed today and for links to other health education materials. Follow us on social media like Instagram and Facebook, or reach out directly to our email readtalkgrow@mayo.edu with suggestions for books or topic ideas. We'd love to hear from you.
This podcast is for informational purposes only and is not designed to replace a physician's medical assessment and judgment. Information presented should not be relied on as medical advice. Please contact a health care professional for medical assistance if needed for questions pertaining to your own health. Keep reading everyone!