Greg Grunberg on Raising Epilepsy Awareness

Episode Transcript

Dr. Correa:
Saludos and hello. I'm Daniel Correa.

Dr. Nath:
And I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting the Brain & Life Podcast. This show, the Brain & Life Magazine and website, are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. Now, let's get to today's show.

Dr. Correa:
Welcome back, everyone.

Dr. Nath:
Welcome back, Daniel.

Dr. Correa:
Great.

Dr. Nath:
Good to see you.

Dr. Correa:
I'm glad to be joined by all of our listeners and excited for our next episode of the Brain & Life Podcast.

Dr. Nath:
Who did you get to talk to?

Dr. Correa:
Well, I got a chance to talk to Greg Grunberg about his family's life, living with his son's epilepsy, and all the work that he's been doing to educate the community about epilepsy and change how it's portrayed in media. Then we feature Dr. Joe Sirven. We both know him as one of the preeminent speakers on epilepsy.

Dr. Nath:
Okay, so pediatric epilepsy is the topic.

Dr. Correa:
That's right. Your wheelhouse.

Dr. Nath:
That is near and dear to my heart. I think that's awesome, to talk about what families go through when a kid has a new onset diagnosis of epilepsy. Based on my experiences with these families, it is a very, very understandably scary thing because you don't necessarily know the cause of it in the very beginning. We do work up to figure out if it's genetic or if there's a structural lesion, but we don't always know. It's such an unpredictable disease, I think that's part of what can make it so stressful for families.

Dr. Correa:
Definitely. Dr. Sirven brings up some of the new treatments and the direction of research, and some of that's highlighted actually in our first audio question submitted by my mommy.

Dr. Nath:
Woo.

Dr. Correa:
My family and her have been living with epilepsy for many years, and so she highlights some of her questions for Dr. Sirven. And we're now taking anyone's questions and feedback for our episodes. You can call the phone number 612-928-6206 to leave a voicemail and we'll be hoping to include your questions in our episodes.

Dr. Nath:
Can't wait to hear the show.

Dr. Correa:
All right. So today we are joined by actor, husband, father, and epilepsy advocate Greg Grunberg. You've seen him over the years on Heroes, Alias, The Rookie, and of course, Star Wars and Star Trek, and A Star Is Born. But many of you might not know that in 2003, his son was diagnosed with epilepsy, and he and his family have been on a long path towards epilepsy control and living better with the condition. During this time, Greg has fully embraced the epilepsy community and has been working towards driving efforts to reduce the stigma of epilepsy, improve education about epilepsy, and advocating for the community of over three million in the US and over 50 million people worldwide living with this condition. This includes a podcast called Talk About It and programs with the Epilepsy Foundation. Greg, thank you so much for joining us on the Brain & Life Podcast.

Greg Grunberg:
Oh, are you kidding me? I am really honored. Thank you for having me.

Dr. Correa:
I'd like to start before epilepsy entered yours and your family's life. Help us get to know your family- Elizabeth, Ben, Sam and, of course, Jake, before all this happened when he was seven.

Greg Grunberg:
Sure. Yeah. Elizabeth and I met many moons ago, and she's the luckiest thing in my life. That was a stroke of luck. We ran into each other somewhere, did not know each other. I immediately knew. I was with a really good friend of mine and I saw her, and I said, "That's Mrs. Grunberg." It was one of those moments that I was like, "She's out of my league, but that's the perfect person." Of course, it was all selfish and nothing of substance. I was just, "This is the most beautiful woman I've ever seen," and then she turned out to be just as beautiful inside. Anyway, we started a family and Jake was our first, and couldn't have been happier. He is the most beautiful kid ever. He was on just that great track that every parent hears, which is, from the pediatrician, "Everything looks good. He's progressing nicely and he's doing wonderful." This is as he's getting older, so he's five, six. He took to sports, a really great athlete. Even at that age, he just really took to sports, hand-eye coordination.

Greg Grunberg:
Physically he was doing all the right things. He was always doing well. Well, then we had Ben, who is his younger brother, and then Sam. So we stood out to have three, and we had three. Three boys, three beautiful boys, and all athletic. They took to sports, baseball in particular.

Dr. Correa:
Oh, that's great.

Greg Grunberg:
Jake was really good at baseball, and right before his seven-year checkup we noticed, when you look out a car window, your eyes catch things. If you look at somebody's pupils, their eyes, they kind of dart. So your eyes go pang-pang-pang, the eyeballs just are looking and picking up things. It's an interesting thing to see if you look at somebody. That may have been a trigger for Jake, we're not sure. But he would stare just for three seconds, five seconds at a time, and we didn't notice it. We're not the window, we're not there. But when we were driving, we would talk to him, and he would ignore us or just take too long to answer. I was like, "Jake, everything okay, buddy?" Then I'd say, "Mommy just asked you a question." And he's like, "What? Oh, yeah." We noticed that happened quite a few times. Asked his teacher if that ever happened in class, and she's like, "There have a couple times when ... But no, nothing more than any normal kid who's thinking about something else or daydreaming," or whatever. But that just didn't seem like Jake. So at our seven-year checkup, our pediatrician asked if there were any issues, and we told him. Then he, and he's just an incredible pediatrician, said, "Jake, I'm going to ask you to hyperventilate. I know you don't know what that means, but can you just breathe in and out, in and out, in and out?"

Greg Grunberg:
Jake did it, and it brought on a seizure that we had never seen before. His head was bobbing for the first time, and it lasted about eight seconds, 10 seconds. Elizabeth and I looked at each other, we were like, "What is going on?" He said, "Look, I don't have enough experience here. I'm not a neurologist, epileptologist." He didn't even use that word, but he said, "I want to send you to a neurologist because that may have been a seizure. I think it is."

Dr. Correa:
Oh, wow.

Greg Grunberg:
"I don't want to scare you with any terms or anything." So he sent us to a neurologist. That neurologist did some tests and said, "I think Jake has epilepsy," and prescribed a medication. Then Jake broke through ... It controlled those episodes, because they were getting progressively worse, and then he broke through. You and I both know that percentage thing where it's like, 75% of the patients respond to one medication and they're fine. As long as you take that, you keep the seizures at bay. 25% become difficult to treat and Jake fell into that. And just to speed things up in his story, I realized very quickly that you have to get to an epileptologist. An epileptologist that specializes with children, a pediatric epileptologist.

Dr. Correa:
Yeah, ideally.

Greg Grunberg:
Yeah. So you get as specific as you possibly can to an expert. So we did, and I also learned in that process that it's impossible. What you guys do, there's just too many patients. It's too hard, and not everybody can be seen. It's like a clinic, and you have to wait in line. I don't care if you're a big actor on TV. I don't care if you're ... None of that matters. We tried to get to UCLA. Yeah, I tried to get to UCLA, or I called the Epilepsy Foundation, which cannot stress to you enough ... You're like, oh, I'm going to reach out to this foundation, this institution. It's not going to be personal. It is. They care.

Dr. Correa:
It is, yeah.

Greg Grunberg:
They're there to help, and don't be afraid to get ahold of them. I reached out, talked to a wonderful woman named Susan Peach and so began our journey with epilepsy. And Jake has broken through a bunch of times, and he is essentially a drug-resistant patient with epilepsy. Jake had brain surgery when he was 12. He's got the VNS implant. We tried the ketogenic diet. We did everything, and we keep trying to stay one step ahead. It's like this long journey, this marathon that we're on, and you're in first place. If you're doing it right, you're in the lead. And you're constantly looking over your shoulder because you know that seizure is running behind you and trying to catch up, and you just want to stay one step ahead.

Dr. Correa:
For you and your wife, was this the first experience with seizures and epilepsy in your family, or had you ever encountered it before?

Greg Grunberg:
Yeah. We knew nothing about epilepsy and seizures. I knew as much as everyone claims to know. Oh, I was in elementary school and I saw this kid had a seizure,, and he fell to the ground. He had what we called a grand mal seizure back then and a tonic-clonic episode. So that was our experience, that was my experience. Elizabeth had had a similar, but we didn't realize that there were so many different forms of epilepsy or seizures. A seizure can take the form of a tick or an emotional outburst or staring spell, or whatever. And then we've unfortunately seen thousands, and Jake constantly had breakthroughs here and there. What I learned quickly was that there wasn't anyone who was a voice in any kind of a celebrity capacity, that I could immediately point to. I know Danny Glover had done amazing stuff. Henry Winkler had done things. There were people but nobody that stuck with it and said, look, this is affecting my family, and I really want to help as much as I could. At that time I was on a show- it was the end of Felicity. I was on a show called Alias, and I just decided, I want to help this community. I need help. I don't want anyone to feel alone like we felt at the beginning. Like you just alluded to, we didn't know anything.

Greg Grunberg:
And if you think that you're the only one being affected by this, and oh, this is so rare ... and there are so many rare forms of epilepsy, but we're all battling this seizure condition or seizures. You need to know that you're not alone. You can live a perfectly normal life, an extraordinary life, if you constantly, like I say, try to stay one step ahead. But to see hopefully someone like me, you, people in the community that really care and care about patients, it really helps. I mean, I'm the red phone for a lot of people in Hollywood, and friends and family they know, don't ever ask to give my cell phone out to people. If you know somebody, if you're a friend of mine, you have my cell number, my wife's cell number and their child just had a seizure, their husband, their wife, whatever, give them the number and say, call Greg now. And the first thing you're going to hear from me is, "It's going to be okay." I don't know what version of 'okay' it's going to be, because everybody's different, but here are the steps you should take. Oh, you're already taking them, great. You're on the right track. Oh, you're already with a neurologist. You're already with an epileptologist, whatever. You're doing the right thing. So people say, "Well, what can I do outside of that?" I say, "Talk about it."

Greg Grunberg:
Don't be ashamed. Don't bury your head in the sand. Talk with friends and family, coaches, teachers, co-workers; everybody should know. And it doesn't have to be a big thing. Like you said at the beginning, it doesn't have to define you. But if they see you have a seizure, and they know what to do, and it's simple, simple things, that will save your life or save you from head trauma or whatever. So don't be ashamed. Everybody's got something. So I started talkaboutit.org, way before the podcast. It's a website where I enlisted the help of every celebrity that I've ever worked with. Because they're always, "If you ever need anything, if I can ever help." So I said, "Yeah. I need your face." Because I need to get people familiar with what to do, what not to do. I need people to share their stories. So it's a way for Jennifer Garner, Lady Gaga, Bradley Cooper, all the people I've worked with, they're on this website encouraging people to talk about it or asking a question. Jason Bateman asks a question, John Mayer asks a question, and then we go to someone like you, an expert, to answer that question. But at least you go, oh, wow. Look at all these people that care.

Greg Grunberg:
And it's now many, many years later. I've got the podcast that I've had for years, and that's still going, which is so great.

Dr. Correa:
You mentioned how there's so many different causes of epilepsy, and there's so many different types- some of them rare, some of them more common. Epilepsy, being a condition where people are predisposed to have seizures, and a seizure is a symptom. It can be a symptom of many things, and one of the things it can be a symptom of is epilepsy. Some people have a specific cause. Did they find a cause specifically for Jake?

Greg Grunberg:
No, and that's the frustrating thing for us is. We don't have history. It's not a genetic thing. I'm constantly being told, "Man, the brain looks beautiful." But no, there was nothing that we could pinpoint and say, okay, maybe that was it. So it's really tough because you go, what is it? We don't have the answer to that question. But at some point you, and as a parent you go, what did we do? Did we do something wrong? Was there something that we should have done that we didn't do? And you can't think that way because there's no one to blame. As the patient, I tried to instill with Jake for many years, it's not you. It is you, but it's not your fault. Some people, I hear this all the time on social media, someone will say, "Hey, I'm six months seizure free." Then someone else will say, "Hey, keep up the great work." It's like, they didn't do anything. That's a really tough thing.

Dr. Correa:
Yeah, you don't want to set up that sense of people failing by having a seizure, or failing by not finding a lesion somewhere. This is the reality. Some people, they have a lesion. They have a set cause, we can work on that. And sometimes we don't find it, but there's still a lot we can do.

Greg Grunberg:
Yeah, and the other thing that I've found is talking about it is the best form of therapy; however, no two situations are exactly the same. So you talk to somebody-

Dr. Correa:
Exactly.

Greg Grunberg:
... and they'll say, "Oh, yeah. My husband has been seizure free for 25 years." I immediately want to put my head down and go, Well, my son hasn't." Then somebody else is like, "Well, it's debilitating to the point where she's in a wheelchair." Well, that's not my son either. So you're never going to find ... don't go into this thinking I'm going to find a mirror of our situation and that's going to be the person that I ... Don't worry about that. None of that's important. Because I've started with, I partnered with Jazz Pharmaceuticals, and they've supported this new show I'm doing on YouTube called The Caregiver. It's the most rewarding thing I've ever done. I'm going around the country hearing the stories of patients, rare forms of epilepsy, but I'm doing it from the perspective of the caregiver. So it's the mom, the dad, the family member, whatever. The thing we have in common is, all we want to do is care, and we want the best for our loved ones. There's so many things I'm learning from these people, both as a caregiver and also for Jake, the people. I encourage everyone to check it out.

Greg Grunberg:
Go to the caregiverseries.com. Click on the caregiverseries.com. That'll take you where you need to watch all the episodes. I'm just so proud of it.

Dr. Correa:
Yeah, the first one I watched and those experiences, just really the opportunity to learn from someone being there at the side of their family member ... and just their experience of living through it and everything they worry about, and how they find to connect with their family member and just look forward to a better future, it's inspirational. We talk about three million people in the United States living with epilepsy. One in 26 people in their lifetime will experience a seizure or develop epilepsy, but we don't talk about the number of people. That one person with epilepsy, Jake, has a whole family that helps take care of him. The number of caregivers impacted by epilepsy throughout the country and throughout the world, is huge. I'm so thankful to many of the people who are doing work like you are, to bring that forward, to have that conversation, to bring key points of information forward. I'm interested, given your insider perspective on media and Hollywood, I want to hear what you think about how epilepsy and seizures are portrayed on TV and in movies.

Greg Grunberg:
Great, great question. That's something that, Phil, Ken and I at the Talk About It company we're working on. We wanted to have a summit every year. Because I want to hear, I don't want to just dictate how seizures should be talked about or handled or portrayed. I want to hear from filmmakers and from the content creators ... I'm one of them, how they want to do it, and what they want to do. There's a film called Under the Lights that this kid Miles Levin did. If you haven't seen Under the Lights, search it out. I'm one of the producers on it. He has epilepsy. He is a brilliant director. He's young, but he did this short film. It's been in all these film festivals, won all kinds of awards. He's hoping to do a feature length version, but I was so inspired by him. It's his story from when he went to the prom, knowing that the lights are going to cause seizures. They're going to trigger seizures. He was like, "You know what? Who cares? I'm going to my prom. I am going to this dance. I'm going to make this happen. I need to." The film starts off with him wearing a helmet in a stall in the bathroom, in the gym, having just had a seizure. Everyone's like, "What's going on? What?" The actors in it are just wonderful.

Greg Grunberg:
I'm just inspired by all these people. It shows me that, again, we're not alone, and we shouldn't be afraid to talk about what's happening to us.

Dr. Correa:
Yeah. I mean, I think to have more opportunities to see the experience from people who live with it, or to be involved in the writing process. Tell us, what do you have coming up, where our listeners can see you on TV or movies? What's next for you?

Greg Grunberg:
I'm doing a show in Phoenix right now, a really cool HBO Max show. So we're working on all those episodes. TV now is such that you shoot a whole season before anybody sees it, because they dump all the episodes at once. But I'm doing The Caregiver. That's my big thing right now. I'm about to go out and shoot more of those, doing the podcast on a regular basis. And then this game show that I'm doing that I really love. It's on twice a day. It's called, 25 Words or Less.

Dr. Correa:
Oh, fun.

Greg Grunberg:
Yeah. I'm celebrity on that. Meredith Vieira hosts it.

Dr. Correa:
That's a lot of fun. I have to check out the game show then, too. Wow. And then if the listeners want to find you on social media, if they're not already following you in the podcast and on these other sites, what's the easiest way for them to find you? Of course, we're going to have links to the podcast and to your social media in our show notes.

Greg Grunberg:
Thank you. It's @GregGrunberg. On Twitter, on Instagram, Facebook, you can search me. Then thecaregiverseries.com is really where I'd love people to go right now.

Dr. Correa:
Great. So next up, we're going to follow up our discussion with some more detailed information with me and a medical expert, our mutual friend, Dr. Joe Sirven.

Greg Grunberg:
Oh, Joe.

Dr. Correa:
I'm wondering, what's your top question for us to follow up with Joe about epilepsy, about the type of epilepsy Jake had?

Greg Grunberg:
I mean, I would say-

Dr. Correa:
Let's put him on the spot.

Greg Grunberg:
I just want to know always, pipeline. What's out there? What's coming? What can we look forward to? Devices that he's heard of. When I talk to Joe, I'm always like, "Joe, what's coming? What's going on?" So I would ask that, but also just ask him who his favorite actor is. If he doesn't say me, he's in trouble.

Dr. Correa:
Okay. Yeah, I'll give him the prompt. All right. Well, we look forward to that follow-up discussion. We'll talk to him about what's coming up next for epilepsy, so everyone can stay up to date. Thank you so much for taking the time for sharing your story.

Greg Grunberg:
Oh, thank you.

Dr. Correa:
Thanks Jake, for letting us talk about his story, and for everything that you're doing to help bring more awareness to the epilepsy community.

Greg Grunberg:
I got to say, I appreciate you saying that. But I can sit and talk to myself all day long, but unless I'm on something like Brain & Life Podcast, man, it doesn't get the word out. So thank you for having me on and for everything that you're doing. I'm here for you anytime.

Dr. Correa:
Great. Thank you so much. Welcome back. I'm so glad to introduce Dr. Joe Sirven. He's a neurologist and epileptologist at Mayo Clinic in Jacksonville, Florida, while also working as the editor in chief of Brain & Life en Espanol. Dr. Sirven is a Cuban American and physician journalist. You may have seen or heard him promoting health awareness on NBC Latino, WJCT public radio station and their podcast, What's Health Got to Do About It? Dr. Sirven, thank you so much for joining us today. I really appreciate you taking the time.

Dr. Sirven:
Daniel, it's such a pleasure, and it's an honor to be here.

Dr. Correa:
Oh, thank you very much. Well, we had just had a great discussion with Greg Grunberg, who shared with us his family's and Jake's experience with epilepsy, Jake's treatment and just about his life. So if you were going to tell our listeners, what is a seizure? How would you describe them?

Dr. Sirven:
I tend to say that there is this abnormal electrical discharge of the brain. Think about it like any appliance. When you have a battery or any type of electrical appliance, sometimes there's extra electrical surges that make things not work correctly for that period of time that it's surging. What we're trying to do is find out, where is that problematic electrical circuit? And more importantly, to help you find a way to quiet it down without hurting the appliance and in this case, your brain.

Dr. Correa:
Okay, then there's also this term epilepsy. Is that just the same thing, or what is epilepsy as opposed to a seizure?

Dr. Sirven:
So in general, what I try to say is that epilepsy is having more than one seizure, or having a tendency to having more than one seizure. Epilepsy isn't just the seizures, but it's the other things that come with it as well. It could be, your mood may not be the best it could be. You might find yourself depressed or anxious, or you may have problems with memory, particularly short term memory because that's where memories are formed. The electricity and electrical circuits used for that, are often the same place where seizures arise from.

Dr. Correa:
Okay. I think that's much more helpful to know that seizure's a symptom, and epilepsy is a condition. Okay. So a large part of your own practice is as an epileptologist. So, I got some questions from the community. The first question I want to start with is from the most special person I know living with epilepsy, my mom.

Anna:
Good afternoon, Dr. Sirven. This is Anna. I have epilepsy, and I understand that Dr. Correa will be interviewing you. Some things that I, as a patient, would like to know is what are the most common causes of epilepsy? I would also like to know, is there is any way of reversing epilepsy?

Dr. Sirven:
First of all, what a pleasure to hear from your own mom. I feel so honored in that way. So delighted to meet you, just by hearing your voice. I would say that the most common causes of epilepsy depend on your age. If you are a young baby or infant, the causes of epilepsy and seizures are quite different from the causes of epilepsy or seizures as an older adult. So it depends when those seizures began. In terms of, I'd say the most common things that we look for is ... let's say you're an adult person, we often look for scarring in the brain, or inflammation is a common cause of epilepsy. There's a very specific thing we look on scans called mesiotemporal sclerosis, that's believed to be from inflammation. In other cases, the seizures can be from trauma. And that is, you got a hit to the head that caused a scar in some way. It could be caused by a tumor in some instances. The older you get, any type of bleeding in the brain or stroke are often very much a cause of seizures and epilepsy.

Dr. Sirven:
Any type of infections that impact the brain and leave a scar, can also do this. There's also some genetic causes of epilepsy as well, and that means you inherited this. They vary again by the age when these things occurred. So there's so many possibilities, it's hard to just put it into one thing. But I would say age will help decipher which group that we're likely to see the most common causes.

Dr. Correa:
So we talked about a seizure being a symptom of epilepsy, but epilepsy itself is a condition where we have to spend some time taking a look at, what caused it?

Dr. Sirven:
Absolutely.

Dr. Correa:
Because it can have many different causes. And no soft balls from moms. She asked, is there any way of reversing epilepsy?

Dr. Sirven:
There are ways to cure epilepsy. If we can find a scar, and it is a safe place that it could be removed, surgery can be done in some cases. In other cases, it's not so easy to find that simple cure. So what we try to do is put it in remission or under good control, which means, you try to prevent them from happening at all, but without creating new problems from the medication side effects or whatever approach. So our goal is always to see, can we make someone seizure free, and can we make sure that they have good quality of life? If that's the case, then you live your life, and it's like any other condition that you're trying to manage. But in some instances we can find ways to basically find a cure for some individuals. So there is hope. There's a lot of stuff out there for them.

Dr. Correa:
And speaking to some of that, there have been at least 21 new anti-seizure medicines since 1990, and even seven new medicines in the last 10 years. How do you talk with people about all these different new medicines and helping choose them?

Dr. Sirven:
Yeah, that's a fantastic point. I mean, on one hand, I'm so delighted that we have so many different options that we can present to people. But the problem is that as you have more options ... it's like when you are on Netflix, and there are 700 choices in front of you of what you may want to watch. So my role is to say, why don't we pick this, this, and this? I give a list of possibilities that could be effective, and then I go over the side effects. And then I let the person choose. Now, oftentimes I'll get the line back, "But you're the doctor." I go, "I know I'm the doctor, but I want you to know what I know so I understand where you want to go with this."

Dr. Correa:
That's very helpful. So really actually taking up a role as a partner with your patient and the family, to pick those medicines. There's lots of different reasons why one medicine might be different than another for that person.

Dr. Sirven:
That's the problem with this. There's no way of predicting exactly how a medicine is going to go. It's always good to have some element of choice, so people know exactly what it is. I have some people who tell me, "You pick any medicine, as long as I don't gain weight." I have some people who tell me, "I just want to make sure I don't get depressed on this med." So it becomes a list of, well, here are our possibilities. Here's what we can do with this.

Dr. Correa:
That's great. Yeah. So it's not just talking about the medicine as being there to stop seizures or change the course of someone's epilepsy possibly. But really, what are other things that matter to them?

Dr. Sirven:
Exactly. I mean, and that's how you get people to buy in, into wanting to pursue the therapy. I mean, if it's something that someone says, just take this and it's not explained, I can tell you, the moment that there's a side effect, people just stop taking it.

Dr. Correa:
That's very helpful. So in a bit of an aside, who's your favorite actor?

Dr. Sirven:
Well, Greg Grunberg, right? I mean, is there any other answer?

Dr. Correa:
Speaking of, Greg wanted me to ask you, what is the latest information in science coming out in epilepsy?

Dr. Sirven:
Wow, that's a huge question. Thank you, Greg, for that question. What isn't coming out, is the easiest way to frame it. All kidding aside, I think one of the exciting things that a lot of people are working on is predicting seizures. Finding devices, whether it's connected to your brain directly or through some indirect way, that can tell someone when they're likely to have a seizure. If someone has the ability to predict when a seizure occurs, imagine how life changes. Because it tells people, oh, I need to take some extra medication because this says I'm about to have one. So it would be amazing if they are able to get that holy grail of understanding and predicting when seizures are going to occur. I think that's the most exciting thing happening in the field of epilepsy right now.

Dr. Correa:
So my own challenging question, you are one of the leaders working with many of us in epilepsy to talk more about the social systemic barriers to access and treatment. We've mentioned devices for monitoring seizures. There's devices for treatment of seizures. But sometimes these and all the new medicines are expensive, and there can be major barriers, or even barriers to just access to that epileptologist or a neurologist. What do you suggest to members of the community who have some of these barriers? What should they do, to at least try to get themselves on the path to seeing the epileptologist and getting the care they need?

Dr. Sirven:
Yeah, such an important question. I think there is a group of people, a large group of people, that don't have access to the latest and greatest things that we've just been talking about for the past several minutes. A lot of reason for that has to do with insurance and policies, and things of that sort. A couple of things I would say is that you can always educate yourself. You mentioned epilepsy.com. There are other websites that are out there, that can let you know what's out there, what's available. Listening to this podcast today, that would be another helpful way of getting information so that you can empower yourself or your family. What are the options that are available and how do I access them? Now, having said that, that means that both the person with seizures and epilepsy and their doctor, their nurse, whoever takes care of them, we have to take on a new uniform that we're not accustomed to. And that is being advocate and almost being the activist type of person, that we now have to worry about upstream issues, which are those social determinants of health. How much insurance does someone have? How do you access things? How do you pay for things? How do you afford things? Those things live in law, policy, and government.

Dr. Sirven:
The only way to make changes at the bedside in the clinic to help people access that, we have to change those laws and those policies so people know that, which means we have to talk about it and we have to advocate for it. I know for doctors sometimes, for other healthcare persons, we're all so busy taking care of patients, and the person who has the condition is just trying to get through the day. We all have to do this extra element of talking a lot and letting everyone know. I mean, that's the bottom line because they have to; if no one knows that there's a problem, then nothing changes. But those things won't change, unless we talk about it.

Dr. Correa:
That's such a great point and really raising that important aspect that we all have to take the steps and vote, and reach out to both the advocates in our community, but our politicians. Because all of this stems all the way from the top, but there are some things that we can do locally.

Dr. Sirven:
Exactly.

Dr. Correa:
Now, along with this, you've been working in public health awareness now for a long time with epilepsy.com. But we talked about Brain & Life. Tell us some more about the magazine and the website.

Dr. Sirven:
Sure. So Brain & Life is something that I've always loved partaking with. This is the American Academy of Neurology's magazine about all things neurology, and as you know, this podcast is part of it. To me, having the ability to communicate to everyone about how neuro things, and especially seizures and epilepsy, impacts us all is very important. So we put out a quarterly magazine that basically covers all issues that we can come up with, to try to keep everyone informed on what's going on. Whether it's the latest headline, the latest treatment, or how a policy or issue is impacting a certain thing that affects people at home. We do it in Espanol, which we're very proud with, so we have that going out as well.

Dr. Correa:
Well, Joe, thank you so much for joining us today. It's been a great discussion. We hope to have you back.

Dr. Sirven:
Daniel, anytime. I look forward to meeting the rest of your family. And to my friend, Greg Grunberg, always wonderful to talk about him and looking forward to his latest movie or TV show, too.

Dr. Correa:
Well, listeners, we'll be back with more each week. Please listen to us each Thursday. Thank you for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episode. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests, along with great resources in the show notes. You can also reach out by email at blpodcast@brainandlife.org.

Dr. Correa:
Follow me and Audrey and the Brain & Life Magazine at your preferred social media channels. Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
Follow and subscribe wherever you get your podcasts.

Dr. Correa:
We really appreciate it, if you can give us five stars and leave a review.

Dr. Nath:
Thank you.

Dr. Correa:
This helps others find the Brain & Life Podcast.

Greg Grunberg on Raising Epilepsy Awareness

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