Physicians as Patients: Live Interview with Neurologists Living with a Neurologic Condition

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Katy Peters:
And I am Dr. Katy Peters, and this is The Brain & Life Podcast.

Dr. Daniel Correa:
Welcome back, or welcome to the Brain & Life Podcast. Now we've teased it before, but Katy, I'm so glad this week we get to bring the live recording from San Diego to our listeners.

Dr. Katy Peters:
It is here. I'm so happy. The annual meeting for the AAN brings together the neurology community both nationally and internationally. And it's the providers, there's researchers in neurologic sciences, advocates, patients in the industry. We all seem to come together. We meet. We're all in the same space. It is so nice to come together to create this live recording. And we must mention the amazing staff at the AAN. They make the annual meeting so special every year and it makes this podcast and other podcasts like the Neurology Podcast possible. So a big kudos to them.

Dr. Daniel Correa:
Yeah, I mean it really is truly an excellent event for bringing together a community of people taking care of and supporting the science behind neurologic conditions. It's so important nowadays. And the AAN, or the American Academy of Neurology, not only brings you the Brain & Life Magazine and this podcast, but also produces a weekly medical journal for neurologists and other clinicians.
And from this comes another podcast that can be a great resource to anyone who's listening who wants more details. If we do a series of episodes about Parkinson's and different aspects, there often can be added information that you can get. It can be a little more detailed and complicated, and so you have to have your ear open to some of that more complicated doctor talk that may be happening when you're looking for more detailed information.
And what we'll do is coming up in some of our future episodes when we find that there's a neurology podcast that may have added information and important content related to a neurologic condition, we will start including that in our show notes or maybe mention it also in the episode.

Dr. Katy Peters:
I think it's a great idea, Daniel. I really do enjoy the Neurology Podcast. It really provides practical information for us practicing neurologists and clinicians for the best possible care for our patients, and new advances too. You and I are both subspecialists, so it's nice to dip our toe into other parts of neurology. We do it on this podcast, but the Neurology Podcast provides insights that can impact clinical practice and really changing patient care as it evolves. The way that I used to treat MS patients and patients with myasthenia gravis has changed and that Neurology Podcast really gives us the education and the expert analysis, and it's been around since 2007.

Dr. Daniel Correa:
So in today's episode, we'll be featuring a live recording from the American Academy of Neurology's annual meeting in San Diego early this April. We came together with Friends on the Neurology Podcast, including one of their hosts, Dr. Andrew Southerland, Katy and I, along with a panel interview of three neurologists who they themselves live with either neurologic conditions or a neuro atypical trait, and they share not just their story but how they have managed their professional training and life while also reflecting on how their experiences help them connect with the communities they serve.
And for this episode, since it was made for both audiences of the Neurology Podcast and in the Brain & Life Podcast community, we approach really trying to address and explain all of the information in a way that's approachable and understandable for everyone, and I hope you enjoy it.
Welcome everybody, and thank you for joining us here both at the annual meeting and at this session. Some of you may have seen in your programs, we are actually going to be doing a live recording during this session. Some of this will be edited and go onto the content that goes out through the Brain & Life Podcast and the Neurology Podcast both to our AAN member listeners and the community listeners. So thank you for joining us as our live audience.
We're going to be introducing you to several colleagues of all of ours who live with various neurologic conditions and neurodivergent traits, and we're excited to hear from them both about their own experiences and how those experiences may have impacted both their training, but also their understanding and communication and interaction with our community members.
So just briefly I wanted to introduce one of our colleagues, Dr. Andrew Southerland. So he is the Harrison Distinguished Teaching Professor of Neurology and Public Health Sciences at the University of Virginia and the executive vice chair at UVA Department of Neurology. And he's a regular host of the Neurology Podcast and a host of a recent five-part series of neurologists as patients that inspired some of this idea, and we wanted to bring it to both audiences and communities. So we're happy for him to join us here today.
And then next to him we have Dr. Katy Peters. If any of you, and hopefully you do listen to the Brain & Life Podcast, you will recognize Dr. Katy Peters as my co-host and associate editor for the Brain & Life Podcast. She's a professor of neurology and neurosurgery and director of the supportive care at the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in Durham, North Carolina.

Dr. Katy Peters:
Well, thank you, Daniel. So I'd like to introduce Dr. Daniel Correa. He's an epileptologist and associate professor of neurology and associate dean of community engagement and outreach at the Albert Einstein College of Medicine, and he is also the co-host and founding editor for the Brain & Life Podcast and member of the Brain & Life editorial Board and AAN Brain Health Committee, and he's my podcast co-host too.

Dr. Daniel Correa:
And we have one member of our panel that will be joining us a little bit later when he gets here. Dr. Southerland, we'll introduce you to him, but next Katy was going to introduce us to one of our guests today.

Dr. Katy Peters:
Yes, I'd like to introduce Dr. Joel Salinas, and I guess he's also been on our podcast several times, and so he's well seasoned. He's a behavioral neurologist, scientist, and clinical associate professor of neurology at the NYU Grossman School of Medicine and founder and chief medical officer at Isaac Health. He's a former Harvard Medical School faculty member, and he is the author of, you've got to check out this book, Mirror Touch: A Memoir of Synesthesia and the Secret Life of the Brain. And co-author of the book, Conflict Resilience: Negotiating Disagreement Without Giving Up or Giving In, and it's always great to talk to you.

Dr. Daniel Correa:
And to come back to what is bringing us together as a neurology community, I'd like to introduce you all to both a friend and colleague, both a former trainee and mentee and now someone who inspires me. Seated to my right, Dr. Andrea Lendaris. She's an assistant professor of neurology and the associate clerkship director at the Icahn School of Medicine in Mount Sinai. She trained with us previously at Albert Einstein College of Medicine in the Montefiore Medical Center, and she joins us today to discuss and share her experience with Usher Syndrome type 2A, a rare genetic condition affecting hearing and vision, and who also lives with both acute and chronic health challenges. She has a unique multidisciplinary perspective and background because before her neurology training, she also was a speech and language pathologist, and so brings all of that wealth and experience into her own training and now in sharing and educating others and our neurology path.
So to get started, I wanted to get a chance for us to hear from each of you a little bit about your story, what you have lived with and how that either informed your choices in coming into neurology and working with the community we serve or just the challenges that you experience right now at this time.

Dr. Joel Salinas:
Hello. So in my head, one way to think about it is acute, chronic and baseline. So for acute, from the experience that I had as a medical student, I was a second-year medical student and started to develop a pretty significant head pain on the right side of my head. It was actually in the middle of a medical mission out in Haiti where I began to have that real significant discomfort and asked one of the neurosurgeons on the trip, "What does it mean when you start to develop sudden headache and that's really localized?" And his response to me, he just lowered his glasses down his nose and he said, "It means you're going to die." Then he said he was joking, thank goodness.
But I did get really great care at the University of Miami Miller School of Medicine, and we discovered that there was a tumor over the right parietal side of my brain and ended getting a craniactomy. It was very fortunate that it was a benign angiofibroma. It was a complicated surgery. Ultimately, I only found out when a medical student colleague of mine actually scrubbed into the surgery and he gave me the full details of what's going on in the OR that you can't get when you're under general anesthesia.
And for chronic, I am always been a migraineur. It's something that runs in my family. And then it was when I was a fellow, when I actually had my first really true visual OR that led to a hemianopia, and I've had hemianopia associated with my migraines now for several years, now pretty well-controlled.
And then for baseline, it was known on neurodivergence. So I do have a neurologic trait called synesthesia. And some of you may have this who are listening to this or here in the audience. And just for those of you that are unfamiliar, synesthesia is really just a blending of the senses. So sounds may have colors associated with them, colors may have sounds associated with them. There's all sorts of different ways that they combine and mix and they just really are I would call it a difference in the way you perceive the world, and it's a trait that you can often find in people who are on the autism spectrum disorder as well.

Dr. Andrea Lendaris:
So my story is similar in the chronic and acute phases. So I'll start with the chronic piece was with having Usher syndrome, which as Dr. Correa described, it's retinitis pigmentosa, which for those who don't know what that term is, it's line of sight vision. It's combined with sensory neural hearing loss. I was born at a time when we didn't really have these robust genetic tests, so I discovered this in second grade when I failed a hearing screening and later on in high school when I thought I needed glasses and someone looked at the back of my eyes to see some of those pigmented changes.
I would say through those lived experiences when we didn't really have the ADA in place, we didn't really have a robust resources and the cultural acceptance in the public schools I was in New York City, and so I had to figure out and how to navigate when to be a wallflower, when to speak up and show your voice. By nature of just wanting to fit in, I learned to speech read, and I persevered in that context through my interest of math and science.
But when I was diagnosed with my vision loss, a big retina specialist in Manhattan said, "You really should consider a vocational path. We don't know where your vision's headed, and I think that's probably more realistic for you." And if you can imagine, I shrunk like a violet inside, and I was angry and bitter. I think I'll never forget how impactful our one-time encounter sometimes with patients really care and impact people to really direct their life choices. Later on it was, well, maybe you shouldn't be a mother. You're going to lose more of your vision if you do that, and a lot of that just drives a lot of fear.
Having come through that, I luckily had a mother who didn't give into that advice, and I just stayed on my path of my interest of being a person. And by being a person, I loved human behavior. I loved the idea of coming together. I'm Italian by background, from Brooklyn. We eat around the table, we talk a lot, we engage with our community. So I pursued a path where that was my job, was to help you integrate back into your life in a meaningful way.
What happened for me is I kept following the breadcrumbs of my curiosity of what happened to my patients before they arrived in rehab, and that led me to wanting to go to medical school, wanting to be a stroke neurologist. It took me 14 years to go through that journey. So if you can imagine, I was super excited when I finally arrived at that point. Completing medical school had its own professional challenges in figuring out how to navigate with my vision and hearing, but then I met acute illness in that. And right before I went into residency, I just did that. I said on another podcast, the med student thing where you try to check boxes. And I got my first mammography, and to get to the chase, I needed a full mastectomy on the right side of my breast as I entered into residency.
To couple on top of that, I was met with a post-op complication where I was home alone and a rib artery ruptured and started separating my skin from my flesh from my body. Home alone, I managed to get myself a couple of blocks away and easily into triage into surgery in a couple of hours.
What those experiences showed me was just how acute illness really can come upon any of us at any time. It had nothing to do with my chronic illnesses. And the people that I met during that acute triage period really put me at ease and really informed, well, how do I care for my stroke patients and how do I care for the people who come before me?
Not to steal the platform here, but I did have to also endure thyroid cancer and more recently I would say I was in a ski accident and had a hip fracture. So I've had an interface. I kid you not. My program director from Monty just said, "I just can't even talk to you anymore." It's given me a tool set to come through and not be afraid of those changes. More recently, my patients have looked me up and they've brought my experiences to our exam room, so it's definitely informed that dialogue, and I look forward to talking about it.

Dr. Katy Peters:
So I guess, Andrea, there's a lot of this happened before you went to medical school and when you went even into training. Who were the allies that helped you, and what were specific traits of them that allowed you to succeed?

Dr. Andrea Lendaris:
That's a great question, and I think I am very privileged that I trained on the Northeast. I'm part of support groups that we meet nationally through virtual platforms and it's not consistent. So that's a call I think for the medical education. I speak of my program director because we have a close relationship. He was supportive and he was an ally. When I was in my intern year, I did an advanced match for neurology, so I was in another medicine program. He worked to try and navigate my education so that I didn't sacrifice my competency, but that we met those opportunities to adjust the schedule so that I can still go forward with my training.
I think in real time, something I tell residents all the time and trainees and students, you don't know the background of, well, how do I adapt in clinical practice with my vision? And there's clinically not seeing something and there's visually not seeing something, and please don't confuse them. I've often said, "Don't assume my low vision is my low intelligence." So I needed an ally. It was in my program director. I also later found physicians, other than the one that gave me that early advice, to reinforce that I could do things. I tapped into local organizations that are geared toward people with vision changes so that you learn the tools you need to use a magnifier, to use scanning, and normalized a lot of what I was nervous to discover on my own.

Dr. Andrew Southerland:
Thank you both for sharing those stories and reinforcing a lot of those wonderful concepts that we talked about on the Neurology Podcast. I just want to add in to what Dr. Correa said, is that the value of these two podcasts is that we really open up the world for everyone out there who we all have various things going on in our lives, health-related issues, family health-related issues, and how that impacts our day to day in particular with your stories being vulnerable to share them.
So what I'm curious about is something you mentioned, Andrea, and also Joel, your experience with this as well. How do you bring this into the doctor-patient relationship? Right, because we all, we'll see a patient, we'll say, "Gosh, that actually sounds a little like something that happened to me or someone I know and how vulnerable do I make myself," but then also to maintain that professional facade to be the best neurologist you can be. Can you just speak to that a little bit?

Dr. Joel Salinas:
Yeah, I think being able to be compassionate is really important in patient care, as many people know. And when we talk about empathy, this ability to really understand or feel the feelings of others can be helpful as well, as long as it doesn't overtake you, but I think having had a personal experience allows you to really understand what the patient might be going through.
And I say might with a lot of emphasis because we really have to, and I ask the patient to really understand what their perspective is. And having been in the hospital more than once, I had been in a pretty devastating car accident where I was in a medical ICU for a bit, and I just remember how important it was that people would come into the room and give you updates. That people in the middle of the night would let you know your vitals are off and this is what we're doing for you now, or just let the experience of just waiting for the team to round. That's a lot. I think it's something that often gets missed when you're doing rounds is that the patients are often waiting all day long for you to come by and give an update, and they're really just at the edge of their seat. And it's just so important to give them all of your attention at that moment because they really have been waiting for you.
I think from the side of neurodivergence, I think as a behavioral neurologist, it's really given me a lot of humility around getting a patient history and really hearing what patients have to say, what their symptoms are, what their experience is, and approaching it with some genuine curiosity. Rather than just saying, "Oh, not something that I learned in a medical textbook that it should be a red flag for me, that this is a possible condition," but really just probing questions, really compassionate questions so that patients know that they're really being seen and being heard in that encounter, which then allows you to build much more rapport. They can be much more forthcoming about their symptoms and allows them to better engage in their care. And we all know that when patients better engage in their care, health outcomes are just way better.

Dr. Andrea Lendaris:
Yes, I think all of that. Yes, yes, and yes, I would add to it, my big mantra is that I want to empower you to understand what's happening to your body and what we together can do to modify and optimize your health. I think we have a PR problem right now in general in the medical community. So it's about building that one-on-one trust with the person in front of me. I feel like that's a small change I could do every day.
So inpatient, I agree, these people are waiting all day, and I will show up at bedside and my first question is, "So tell me what you understand about what's happening, why you're here right now?" If there's a family member at bedside, ask the person because we can start at a very high level, and they need the basics and they need to meet you in that conversation.
So I think yes to all of that. I think really just remembering what it's like to be in that bed and not have any power to really demand the attention at the moment that you want is really a key way.

Dr. Daniel Correa:
Something I wanted to ask that I think we can all learn from, and you each have your own experience in it. What about taking the white coat off. Our listeners who are professionals in other fields, or are physicians themselves, when they are in the role of having to focus on their own health and wellness, a medical issue, whether it's acute or chronic, how do you approach not being your own physician, not focusing and being in the mindset that you have as a neurologist or in your own medical background and really embracing that personal focus on your own health?

Dr. Joel Salinas:
I'm happy to start. I'm awful at that. I'm really awful, full transparency. When I had my first visual aura that led to hemianopia, I thought to myself, this could be a stroke, but it's probably a migraine. I can sit through this. And I think I had several colleagues that were like, "You should go to the emergency room." And I said, "No. No, it's fine." And I think in retrospect that was probably the wrong move. But I think I had a subsequent experience where I didn't end up developing a compression palsy, and I did learn from that experience, and I did go to the emergency room and did the work up and was just 100% sure that this wasn't something much more serious.
So I do think that we can fall into a trap with our clinical knowledge to really anchor what we think is going on with what we've had in the past or what we really hope is going on, and that can be a mistake that we make because we are highly, highly partial when we're thinking about our own health, and it's really valuable to have an external third party there to actually talk through what's going on and give you the advice that you probably need at the time.

Dr. Andrea Lendaris:
So I'm going to give an honest answer. I don't think of myself as a physician first. I think of myself as a human because I came in as a second career, and so if I'm honest with you when I have something physical happen or something where I'm ill, there's this weird voice that says, "Well, that's why you shouldn't be a physician because you're a patient and so you don't belong here on this side of the curtain because you're ill." And it comes from long ingrained in my formative years of where you belong.
And so I have to go through a cycle of, honestly, it's grief, it's anger, and then centering myself around people who have the realistic and the program director, it's the people around you that say you're competent, you're able, you're invited, and you're included, and I feel I need to say that a little bit louder these days.
But the medical education piece is that when our trainees get sick or when there's health, even positive things, women have children in their fertile years, where do we make room for that in our infrastructure so that you can be a human being?
Where I feel like I've brought this message forward is through our disability and workshop curriculum that we developed this year in our neuro clerkship. And my favorite day is we spend the morning together and we go through this team building simulation session, and then it gets to be a very, it's a small group, it's a clerkship. And then in the afternoon, we go and we do the simulation, we do emergency stroke and seizures. And so I say to them at the end of the day, "This is my favorite day because we just did the essence of being a physician. We're humans, and we can do this hardcore medicine science stuff, so let's not lose that," and that's what pulls me out of it. But if anything, I really have to go through a head game cycle.

Dr. Katy Peters:
They often say that physicians make the worst patients, but it seems that for your experience being a patient has made you better physicians or has changed your physician experience. I guess what tips in being resilient, because you've both been through, I think med school was hard, but you went through it with so many challenges. Do you have any tips on being resilient?

Dr. Andrea Lendaris:
I would say that the first thing is to not be afraid of change, not be afraid of pain or what's to be. And so a moment when I feel frozen is like, okay, what's reality on the table and what is the worst thing I'm afraid of? Do you need to take some time off of school? Do you need to pivot? I mean, I say that to people a lot. Let's not be afraid to pivot. You may discover something else amazing. I think being resilient is taking the people around you so that you have a realistic perception or a more rounded perception, not just what's in your mind and not to be afraid of a change or what you're feeling.

Dr. Joel Salinas:
For me, I think one thing that was really helpful in being resilient relates to a lot of the research that I do around social connection and social relationships and how it influences health, and that social supports. So really identifying who are the people in your life who are good, reliable supports, who know how to listen, who know how to ask you if you need help and help you in the ways that work best for you.
And I come from a Hispanic family. My family's from Nicaragua. We're a first generation immigrant family, and I know any health issue, you've got the whole family and extended family and extended extended family. They're in the room with you, and they all want to know all the updates, and they all want to be there. And I know that not everybody has that, but I think it's always been a really, really reassuring and also just been really empowering to feel that I have all those eyes, all those ears, all those people who really care about me who are just ready to help.
Especially in my family, health literacy is very low, and when they offer help, it's in all the ways that actually I really appreciate like a hand on the shoulder, cooking food, making sure that you're getting rest, being the nag when you need to have somebody be the nag, just sitting there with you and then watching novellas together, whatever it takes.

Dr. Andrew Southerland:
You mentioned those great qualities in your loved ones and your supporters. I'm curious, because you all are the keenest observers of what a good bedside manner looks like for a patient, you mentioned recognizing that one little bit of time that you're in with a patient is they've been waiting for hours. I mean, that is such an important thing to try to help students and residents remember. But when you see your colleagues, when you see trainees, what are some of the characteristics that you know say, "Ah, they get it. They understand what that patient's going through." Can you just give us some tips for all of us who are trying to be better?

Dr. Joel Salinas:
Yeah, I had this moment when I was, I was actually still interviewing for residency programs. I was at a second look, and I remember one of the neurology residents, Eyal Kimchi, you may know him. He's in epilepsy. He's phenomenal, but it really left a lasting impression. And just unexpectedly, there was a patient who had come in and she had had a generalized tachyclonic seizure, and we found a lesion. And in the middle of rounds as we were doing the usual asking interview questions, she just became very tearful and very distressed. And Eyal took the leadership moment as, and he was a junior, but he had admitted her the night before, and he asked the team to move on to the next patient, and he sat down next to her and held her hand and had a conversation with her about what she was going through and asked her what she needed, and that just really stuck with me.
It's just how important it is to just be very human with patients. It just goes such a long, long, long way, and it's a trait that any of us can have. It's easier for some than others, but if you recognize that within yourself, really look to the people who you really admire and who have that really great bedside manner and figure out what are the things that they do, what are the behavioral things that they do that I can put in my toolkit and apply for myself?

Dr. Andrea Lendaris:
I think that's a beautiful example of how we can't be afraid to abandon a rigid structure of what we think rounds should be. Being a new physician, I was like, well, I need to be Stoic. We need to have this to be the rounds. I need you to hear the clinical trials relevant to these stroke patients. The truth is I actually remember back at our days in COVID where we were all deployed together, and what I secretly loved about that moment, I'll take a little positivity, was the hierarchy was collapsed and we really felt like we were colleagues that we were here to care for the patient.
And sometimes I think in our traditional sense of medical training, we lose that because there's a performative element for the med student who has to give the perfect presentation, the resident who has to make sure that they're saying the perfect thing. And I actually, I can't practice that way. And so I say, "You impressed me by caring about your patient, and we can still talk about literature, and we can still do the humanistic things and the academic things, but with a patient-centered focus instead of a self-serving hierarchy service." I can't operate that way. And I think you invite the patient into that experience. You built that rapport. We're building the trust with that person to better care for them.
I one time got yelled at our campus because someone had a terrible experience in the emergency room at another hospital, was discharged, came into our hospital, then they found out they had a stroke. I walked into a family just yelling, and I actually left my team there and I just said, "We're going to listen to her. I'm sorry that happened. I apologize. That's a terrible... We should not have treated you that way," and just demonstrate how you have to meet people because the experience they're going through is real. We have to move away from the mindset of this is making our job harder.

Dr. Daniel Correa:
So you each have shared how you've learned some from your own experiences both in childhood, but then throughout the professional experience how you've seen amazing examples of colleagues in the healthcare system and learned from that and even your engagement and connection with other members of the community. But I'm wondering what have you learned and taken from community members and patients about how they have approached and managed living with their symptoms, conditions, or neurologic traits that has actually helped you, not professionally, but even on your own personal side?

Dr. Andrea Lendaris:
I think people are giving me feedback of how we're engaging with them. So I've learned an analogy that I use all the time. There's this shock factor, "I can't believe this happened to me." And I said, "If we took a car and you bought a car and you drove off the lot, you know it loses its value because you're going to put miles on the road." Why do we have this assumption that I'm going to get up every day and go through my life and do high functioning things, but nothing will happen to this body? It will continue to operate. It's informed me when I hear the misunderstanding, and I see people turning away from Western medicine, throwing pills at them and then going to TikTok and getting social media videos and then starting to take supplements instead.
So I want to empower people by putting feeds into their facts and tell them, anything you put in your mouth, whether it's water, a vitamin or medication has its positive and negative, so let's have a conversation. It's taught me that there's a big education gap that we have to meet, particularly with the social media.

Dr. Joel Salinas:
For me, I think it's been really powerful to see patients advocate for themselves where the patient has the courage, or the family member has the courage to step up and say, "Things could be better," or, "The way that this was done was not right." And it can cause a lot of distress for people on the team and the staff when you get this negative feedback, but it's really there to improve how we deliver care. And I think we should be much more empowered to ask patients for that feedback because not all patients will have that courage to advocate for themselves. And as many of us know, the health system is very complex and it's very unforgiving sometimes, and we don't really appreciate until when we're the patient or we're navigating the system for our family members.
Having to navigate medical appointments from my father recently, it just reminds me, I just couldn't imagine, I mean, it was so hard for me as a physician to be able to navigate that system. I can only imagine how challenging it is for someone who has low health literacy or deference to authority to navigate the situation and be able to advocate for yourself.

Dr. Katy Peters:
You brought up the system. What do we need to do to have it be more feasible for patients now that you see it from not just the physician side, but also from being a patient? What can we do?

Dr. Joel Salinas:
I think coming at it with the system's thinking can be really helpful. And that feels very lofty and potentially abstract. I've done this more directly with the work that I do with Isaac Health. It's a telehealth service. It's essentially a telehealth memory clinic, and we've made sure that we've built in care navigators. So there are care navigators who work with these patients, so their main point of contact.
And I can't tell you when they give positive feedback, they will say about the great care and that people listen to them and how things happen, but they will always say that care navigator by first name and how grateful they were that they were there to listen to them and to be there to answer questions for them. I think having either the team being trained to be able to provide that kind of level of navigation or coordination or having staff that can do it is really, really critical.
Knowing that there are limited resources in different settings is also really important to acknowledge because that means that there's an opportunity to advocate for those resources and really, even studies for those of you interested in health systems research, it's really important to really understand what the impact of these types of services are because if we don't really quantify what the impact is clinically, but also from a cost perspective, it's hard to really mobilize resources to provide that.
I mean, health systems can be very, very complex and it can seem really overwhelming, but with these big, big problems, I find it really helpful to just think about what can you do today? What can you do right now? What's the at least can't we try in that situation?

Dr. Andrea Lendaris:
Yes, I try to focus on something that's within my realm to actually engage in because the health system, there's a lot of people who get paid a lot more money that manage things I have no control over. It's like the serenity prayer in that sense. What can I do today? What can I do with what's in front of me? And I too think about, well, what resources as resources for stroke patients change, am I aware of all the graduate programs? So my speech background, who needs patients in their speech therapy graduate clinics? I have a referral source for that. There's support groups within our health system, but what other research is going on that my patients are eligible for? That's my responsibility to be aware of that, and I can tap them in.
I think also just being sensitive. There's someone who's doing an initiative at our institution to have an accessibility tab. You know how sometimes in our EMR there is language spoken and that's there? Well, accessibility needs and people can include that. So do you need someone to show you where the door is to go into your appointment? Something else she's working on is to see if, again it's a concept of doing something that's accommodating but may also benefit all of us, what if when you go to the restaurant and you have a buzzer to tell you your table's ready, what if that's how you knew you were time to be called? Well, that's also HIPAA-compliant, and also for someone who's deaf or hard of hearing, they won't miss that their name was called. So there's things that we can do on a very small scale I think that would benefit.

Dr. Daniel Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @BrainandLifeMag or visit BrainandLife.org. As your hosts, we would also like to hear from you on Twitter @NeuroDrCorrea and @AudreyNathMDPhD.
I think we should take some questions. Thank you all for joining us here, and I'm wondering if there are questions that you have for Joel or Andrea?

Speaker 6:
So can you talk about the role, or what role if any there is for you guys, of anticipatory anxiety and maybe some avoidance, both as we're dealing with our own health challenges, but then hearing stories and hearing patients talk to us about what they're going through and having to relive some of perhaps what you've been through or how that impacts you from day to day when everything is going okay, but it's all still in the back of the mind, right?

Dr. Andrea Lendaris:
Sure. I could share the story of a patient actually looked me up before the appointment. And a new thing now, they can read their own records and their MRI says microvascular ischemic changes, so everybody's nervous. Even though there wasn't a cortical stroke or somewhere else, it's like what's going to happen? And the anxiety this patient shared with me and labeled it as such, "Am I going to have dementia? What's going to happen to me," and then I reassure her. We talk about primary prevention, et cetera. "You know, I looked you up, and you may go blind, so how are you dealing with that?" I said, "Okay, we're taking a sharp left here." So I wasn't prepared to honestly deal with that in my own patient encounters, so I don't know where that puts me on the side of the curtain, but other than being a human.
So I just said, "You know what? I have to deal with that anxiety, and I give mercy that I don't know. No one's promised me tomorrow, and no one's promised you tomorrow. I just do the best I can to take care of my own health, my body so that I could live the life that I want from the inside. And right now in this moment I got an education to be a physician so I can help you, so let's get back to that."
I think a lot I feel and I sense from people is that fear and anxiety of the unknown and what will happen to me? Part of the reason why I feel comfortable being public because I feel like the more people see different kinds of physicians, the more you can get comfortable with having someone take care of you like that. And if you're physician's that way, then it's okay for you to be that way.

Dr. Joel Salinas:
I think there can be a lot of anxiety, especially around disclosing something health-related. And I've been very public about my own neurodivergence. I mean, that was the subject of my book Mirror Touch. And I was so worried when I was deciding whether or not to do it partly from the side of patients, but more so my colleagues and what would my colleagues think. Especially when neurodivergence, especially back then, it wasn't something that was in the mainstream as much that people were beginning to appreciate it. And I just kept on wondering about will people not give me opportunities? Will they see me as really impaired, or will they see me as different enough that they just wouldn't seem as a part of the group or not invite me to things or not include me as much?
And I think in sharing my story and my experience very candidly, it was really helpful to hear from the public, from patients and from other individuals who had these experiences or I was just really grateful that there was a name for what they had been going through. I'll never forget when I got a handwritten letter from someone who said, "I've been diagnosed with lung cancer, and I only have so much time to live, and hearing your story I just wanted to say thank you because I get to know something about myself that I didn't have a name for before I die." And I think it's you don't really realize the impact of being open and authentic until you actually take that really courageous step to do it and realize that some people may take it the wrong way, but if just one person feels really empowered and feels less alone as a result of it, I think it's completely worth it.

Dr. Andrea Lendaris:
I 100% agree. I think having that dialogue and that discussion is important. It brings me to another point of just patients who are listening to this, people I should say, who do you pull next to you? Who are the ones that are your people who are going to help you through those anxiety moments? And what I often say to people, "The people who love you and who really support you are not going to judge you when you fall on your face or you're having a low moment, right? They're not the people who going to be like, well, of course it's because of your vision. That's not the person you're going to pull into that inner circle when you're in those low moments. It's the ones who can help you see the other perspective."
And just accepting the fact that there is judgment, I think there are people who probably judge my ability to move seamlessly or to be a stroke neurologist because of my vision and my hearing, and I try to hold a mirror up to that because really it's coming from your experience in life and it's not based on my competency, very difficult to separate those things.

Dr. Daniel Correa:
So I wanted to thank one of the online participants for a question and just share this. So how do you manage neurodivergent challenges in clinical and academic practice? And as my own add-on and follow-up, have you ever encountered that someone feels an invasion of privacy with your mirror touch?

Dr. Joel Salinas:
Managing neurodivergence, just in clinical practice, I think for myself it's been a matter of just being very aware of the role that it can potentially play and really checking in with myself. If I'm really tired and I've had a lot of stress, I just know that I might be a little bit more raw, and I might need to just check myself or give myself more time. I try to bring in all of my tactics, my techniques that I have, whether that's breathing or being very mindful, taking my attention to doing a body scan, for example, when there's a lot of distress going on. And I think it's just working with whatever's been helpful for you outside of that and just having that in your back pocket when you really need it. I mean, that's all I can really say.
This question about mirror touch that you brought up. Mirror touch, it's a type of synesthesia that really is about experiencing the physical sensations of others based off of what you see and other sensory input. Something that's actually pretty well studied. There's a lot of really great cognitive neuroscience around it. I just happened to be slated by some neuroscientists who were looking into this in terms of trying to understand empathy and people were just very curious why a doctor would, why I would pursue medicine with that experience. And when I think about why I chose to pursue medicine and to be in really challenging places when other people with mirror touch are usually shut-ins, they become very isolated, I think it might have to do with my upbringing with my family. We were really big about making sure that if there's something that's uncomfortable or scares you, you go toward it because that's where you're going to learn. That's where the opportunity is.
And even in my training when I found myself in really uncomfortable situations, just because of my own internal neurological experience that was going on, I would just make note, okay, I need to do this again. I need to approach it again when I'm ready for it or I need to figure out how can I be more ready the next time it comes up. And I think as a result, it's just given me so much more resilience in those really challenging times and also a lot of self-compassion when things don't work out the way that I want them to.

Speaker 7:
We have a follow-up question from online.

Dr. Daniel Correa:
Please.

Speaker 7:
Do you recommend to disclose to your employers medical issues such as migraine, ADHD, long COVID, et cetera? If so, how do you do it and how do you ask for accommodations without being labeled or fearful of discrimination?

Dr. Andrew Southerland:
And as our guests are thinking about how they're going to answer that very good question, just when you think that our mutual podcast cannot not be more impactful, we have a new guest that I just want to make sure we introduce who can share his additional perspective to that as well. Dr. Eric Seachrist is an assistant professor of neurology. He's a neuroimmunologist at West Virginia University. He's a recipient of the A.B. Baker Teacher Award in 2021, and he shared with us on the Neurology Podcast about his own experiences with multiple sclerosis symptoms that arose when he was in his training and how to balance that throughout his career and the impact there.
So welcome Dr. Seachrist, Eric, to our panel, and we'll throw you right into the cauldron to answer that question and share some of your own experiences as well.

Dr. Eric Seachrist:
Well, hi everyone. Sorry for being late. I was at another talk and it ran over a little bit, in good way. We had lots of great questions like that question. That is an excellent question. I think that's going to be a little individualized. For me, I've been pretty upfront with my diagnosis. So I was diagnosed with MS back in 2019. I had transverse myelitis in 2018 and my last year of neurology residency, which was a lot of fun. And I had already agreed to take over the MS clinic before that happened. So I got hands-on experience, which was really helpful for everyone, mostly me.
It's been an experience, for sure, but I found that I was worried that it could be used against me. If you think about all the negative things you can think about with MS, particularly cognitive. I was like, well, if I have this diagnosis, our patient's not going to want to see me. Are people going to not give me opportunities because they think I'm going to be too sick or I can't handle the cognitive load? What is going to happen career-wise? And that was something I really worried about, and I talked to some people and then I realized that through sharing it and through sharing my experience as an educational tool, trainees, with other faculty, things like podcasts, that it's actually, it's helpful, and it gives me power over the disease where otherwise for me, I would feel like it was in control of me and I couldn't share.
So that's just me personally, but every person, every condition is individualized. But from an employee standpoint, if that condition will impact your work, you really do have to let people know. Otherwise, that's just going to catch up to you eventually, so it's better to be upfront. So it is individualized though how much you want to share with people.

Dr. Andrea Lendaris:
I think it's a very personal question. I would say, again I was switching careers and at the time I was applying to medical school in 2013, it didn't seem inviting. I think there was some literature out there that was like, we actually don't comply with the ADA, and so I really had an internal question, and I sought out my physicians to help me say, am I competent, am I... I don't want to cause harm to somebody. That's my worst fear. I want to be here to help move things forward and care for people. I don't want to be in the way of that. So making sure that I have the competency and not being in the way of that.
I would say it depends what you're applying for. I didn't want my medical school application, my essay to be about that because I had merits to talk about, so I didn't want it to overshadow that. Similarly, I like to take this work and I move forward in the medical education space, but it's not to be the poster child of what this is. There's a delicate balance. With today's political climate, I think you have to be cognizant about where you are, who your employer is, and what the legality is within your state. That is an unfortunate reality, but it's something to consider.

Dr. Joel Salinas:
Yeah, I would agree that it's a pretty personal decision when and how you disclose and also know what's the purpose behind disclosing. If your medical condition or neurodivergence does impact clinical care, that's something that you really should disclose because there's the potential for harm. But you also want to know legally what are your rights when you do so, and you want to do that before you disclose. And there's a lot of foundations and associations out there for whatever condition or trait that you might have that might be able to give you some insight into that. There are employee assistance programs and other resources that might be available through your employment that can help to also give you some information where you can disclose in a confidential way and then ask what your options are. I think the more you really explore your options, the more empowered you will be.

Dr. Daniel Correa:
We have another question here.

Speaker 6:
So when we're talking about the world of diversity, if we're still allowed to say that word, now there's the idea of diversity tax, and that individuals who are from diverse backgrounds or have unique experiences often are asked to serve in ways that help to increase inclusion and diversity and be the poster child, if you will, for it. Have you found that at times being open about having a diagnosis or being a patient as well as a physician, and dare I say a human, that you at times have to again, maybe participate in that discussion a little bit more or where you're the one that people tend to go to with these sorts of questions? Or do you feel pressured to hold yourself to a higher standard than perhaps what you think your colleagues might do?

Dr. Andrea Lendaris:
I think it's something, I'm fairly new as a physician attending, I'm a year and a half in, I think if I'm honest along my journey, I didn't use my mobility cane in medical school. I was verbally disclosing, but I wasn't using the tools that I really could to adapt for my success. What did that translate into? So my point is if I didn't disclose verbally but I wasn't using the tools, I found myself not succeeding in the way that I could. I think I tried to focus on the task in front of me to get where I am.
So to fast-forward now where I'm in a position where I can really help change and help talk about medical education, I feel myself wanting to give back and throw back the ladder to as many people as I can. I think something I've talked about at AAN is maybe we can help clerkship directors really have a toolkit. What do you do? How do you adapt the teaching? Because it's not easy to reinvent the wheel individually. But maybe if we all support each other, we can have that kind of tool, even as residents.
I am careful. It's a line. I didn't do this for 14 years so that I could be the poster child. I did this because I wanted be a stroke neurologist. So I'm trying to marry those interests in medical education because if I can make these changes, it'll benefit all teaching, and then also bring it into stroke because, let's face it, there's disability in every aspect. They're having a traumatic encounter with that.

Dr. Joel Salinas:
On the point about being asked to be the token or to be the diverse voice in a group, I think that ends up being a bit of a personal question in terms of what is your interest in doing it? What's your openness and willingness to do that? Sometimes you may be asked to do things that are outside of your skill set as well, to give advice on something that you may not be able to give really good advice for. And in that self-reflection about what your openness to do it is, there's this bit of building up the courage to be able to set a boundary and say, no. It's easier said than done because of all sorts of different contexts and power dynamics that there can be that I think is really important to be able to learn how to say no to situations where you really don't feel like you'll be adding or it'll be detracting away from what's important to you.
And personally I have been asked to participate, and I think this is something that many people in the audience and listeners can probably relate to when you are an ethnic minority or an LGBTQ community member, you get asked to be representative in some situations where there's not a lot of diversity. And I used to say yes, and now I'm much more comfortable saying no because I want to make sure that if I'm going to be advocating for myself and my interests and my needs in my career development, I need to make sure that I'm also giving myself the bandwidth and the space to be able to focus on the things that really matter to me so that way I don't have that diversity tax that people call it.

Dr. Eric Seachrist:
Those are all great points. For me, I think it's more the ladder of trying to hold myself up to that level. So if I'm educating trainees of this is how you should communicate with people, because of my own experiences having a really bad encounter as a patient that really shaped the way I talk to patients and try to be more open and listen. So then if I'm feeling rushed and they're working with me and I'm wanting to shut things down and move on to the next patient, I feel like I can't. But you try your best and you try to give people their space as best you can, but I haven't really been asked to be a poster child really of anything. It's been more voluntary. MS is a pretty small part of my career right now that if I didn't do that, if I didn't do the education standpoints, I'd probably forget to take my medicines.

Katrina Hermetet:
Hi, everyone. My name's Katrina Hermetet. I'm the Vice President of Medical and Scientific Affairs for the Tourette Association, and Tourette's Syndrome is here this year, so that is a big historical moment for this condition. Probably the most powerful moment in my career was hearing young future physicians talk to each other about what it would be like to go to medical school with Tourette's Syndrome. And so what you said just really resonated with me, that I think our own journey healing happens when we turn and we mentor others, that we become the attending or the supervisor that we never had. That's where the peace space is, that I can do that because nobody did that for me. And so being the best attending or being the best teacher and letting that be a moment of healing is just truly powerful.

Dr. Joel Salinas:
Thank you for sharing that.

Dr. Daniel Correa:
Oh, and we have another question. There'll be a microphone right behind you. There you go.

Brandon:
Hi, my name's Brandon. I'm an undergraduate diagnosed with epilepsy, so that's driven me into neurology. I was wondering if you can provide any input on how you have navigated early medical education with a condition being that's something that I'm going to have to encounter pretty soon.

Dr. Joel Salinas:
Yeah, I think one way to think about it is what you put on applications. I think this is a common question that people will have is how much do I disclose, and that also ends up being a personal choice. We had mentioned before how there's so many other things about you, and so you want to make sure that you're making as active a choice as possible about what you're communicating about yourself, and there can be some times where openly disclosing can actually be very helpful to determine which program is a good fit for you.
Being LGBTQ, I knew that I wanted to be open to some degree so that way if it was going to be a problem with the program, I didn't want to interview with them anyway. I know that's not the perspective of everybody, but I think you get to have the choice about how much you get to disclose. And if somebody is pressuring you to disclose that, there's a lot of policies and law against that. You should actually mention that and escalate that, and that should not be happening.
But I think from being able to just take it from a place of strength and frame it as such can be really powerful to be able to say, "Because of my experience with X, Y, Z, I will be a better physician," or, "I'll be a better clinician because I'll be able to understand patient's perspective," or, "I'll be much more thoughtful about their experience," and just framing it really as a strength rather than a vulnerability.

Dr. Andrea Lendaris:
I would say in general the whole process of applying to medical school put you through a series of steps that's going to really inform and push you to think and reflect on who you are. For me, when that disclosure question came, it also came with denial, acceptance, and there's a lot of self-insight that you have to take some time with. So who am I, and how am I going to present myself to you?
Really, medical schools want to see that they want to invest in you because you want to contribute to this community. So if you start out with a perspective of this is why you should accept me because I've been through this, they want more than that, and I think that's reasonable and you should want more from that from your career. What have you engaged in? Tell me more about who you are and what's driving you. And then it's, oh, and also I have this perspective. Then you have a bonus to talk about.
I think once you arrive to your medical program, how to navigate that is the disabilities office, and you should look for schools and programs that have that support service. I will say in people who have come to talk to me and students, they get frustrated sometimes, "Well, they don't know how to help me." And I say, "Well, that's the unfortunate reality is it's not personalized adaptation in that way. There are some basic tool sets."
But running in the background of all of this, when you go into that transition to your clinical years, is you also you learn the competency and then, okay, and then how do I adapt? It's going to be different, and it's going to be different from site to site and specialty from specialty, so don't be discouraged from that is what I would say as well.

Dr. Eric Seachrist:
I agree. Great answers.

Dr. Daniel Correa:
So I wanted to take the time particularly to thank Andrea, Eric, and Joel for sharing your individual perspectives and insights, not just as being members of the community, but also members of our professional community to help us all have an insight on how to reflect personally on our role as individuals, as humans, and as members of our broader community living with neurologic conditions and supporting them.
Thank you to those of you who joined us here in person and online. It's been great to see us attracting a crowd, and we look forward to hearing more from our listeners in both the Neurology Podcast and into the Brain & Life Podcast with your feedback and questions about this live recording episode, and please check out more of those episodes. For more information with detailed evidence-based information on the Neurology Podcast about a variety of neurologic conditions and the updated science, and on the Brain & Life Podcast stories and realistic and understandable information about living with neurologic conditions.
Thank you all again for joining us.
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at BrainandLife.org.

Dr. Katy Peters:
Also for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to BLPodcast@BrainandLife.org, and leave us a message at 612-928-6206.

Dr. Daniel Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at NeuroDrCorrea.

Dr. Katy Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online at KatyPetersMDPhD.

Dr. Daniel Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Katy Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Daniel Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life Podcast. See you next week.

Physicians as Patients: Live Interview with Neurologists Living with a Neurologic Condition

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