Acute Flaccid Myelitis and Disability Advocacy with Sarah Todd Hammer

Episode Transcript

Dr. Correa:

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

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

Dr. Correa:
Welcome back to the Brain and Life Podcast. Now, Katy, this week I was thinking about our episode and it made me wonder what are some of your memories of childhood that formed the path into who you are now?

Dr. Peters:
This is "deep questions" from Dr. Correa. Deep thoughts, but I'm going to have to say that it was the required science fairs that I was in at Good Shepherd Elementary School. I guess it was the last science fair. My sister was older than me and it was the last one and my dad had always said, "You can make a steam engine out of egg shells." There was like this buck that you can do it. And in the sixth grade, it was the sixth grade, then I was going to go to junior high after that. In the sixth grade I said, "I'm going to make that steam engine out of egg shells." And I did, and you have to... It was how to do steam engine.

I'm not going to show you how I did, but whatever, but all experiments prior to that with the eggs and the fire and the flame and whatever to produce steam, all the eggshells just exploded. So, when I went on the day of the presentation with the judges, I sort of stepped back as I lit things. I loved it. I had fire in elementary school, in the sixth grade too. The steam engine actually worked. It spun around. It lit a light bulb, but it was pretty amazing. And ever since then, I got first place in that science fair in sixth grade, and I got hooked on science. I got, so I'd say go STEM all the way.

Dr. Correa: Well, it makes me think of things all the different, many experiences and mentors and everything that helped support me in my own path in sciences and medicine. But really for me, I think it goes back even before that because I needed the inspiration even to figure out how to focus. My mom tells stories of me running, literally like practically bouncing off the walls, from wall to wall in our house, bumping into things. I have a little bit of a permanent bump on my forehead from what she says were all the things I hit as a child. And then later the variety of sports, I think they literally just tried to find as many things to keep me occupied, to burn up some of that energy so that I could focus.

And it was once I had teachers that really embraced, that supported me as a kinetic learner related much of the learning and the STEM activities, to movement and sports and exercise, it helped me focus not only getting that energy out, but really having teachers that embrace that. And later on, connected to a love for music and dance and sometimes help me find better ways to study and learn, both relating to movement and then also thinking about it scientifically.

Dr. Peters: We are so lucky that we had, not only parents that supported us in our endeavors, but also those teachers, the teachers, just even at-

Dr. Correa: Absolutely.

Dr. Peters: I would say kudos to our elementary and our middle school and high school teachers that took a shine to us and allowed us to explore our interests and activities, whether they were mental or physical.

Dr. Correa: And this week, we get to meet Sarah Todd Hammer, whose sudden onset of a spinal cord injury at age eight really, truly defined a lot of the rest of her life. And for a period of time took away access to the movement and dance and ballet that she loved. She has turned this experience, not only after her rehab and learning more, and helping fill some of the gaps that are understood about her condition, also to opportunities to advocate for others and inspire many.

Following that discussion with Sarah Todd, we will hear from Dr. Kiran Thakur. She's an infectious disease specialist, particularly in neurologic conditions, and she'll share with us some about the variety of infectious conditions that can affect the brain and spinal cord and especially in this unique condition called acute flaccid myelitis. We hope you enjoy this episode.

Welcome back to the Brain and Life podcast. We're so glad you're here with us and I'm glad to introduce you today to Sarah Todd Hammer. She's joining us from Atlanta, Georgia. Sarah Todd is a three-time published author, adaptive Fashion Model, spinal cord rehabilitation and accessibility advocate and consultant. She, and her family have shared over the years Sarah Todd's experience with a rare disorder called Acute flaccid myelitis, that she got during her childhood leading to a spinal cord injury and a life-changing journey of rehabilitation. Over the years, her writing and advocacy has been dedicated to raising awareness and encouraging others for their own unique experiences with spinal cord injuries and neurologic conditions.

You may have also seen her featured in People Magazine, Newsweek, maybe on TV and PBS or ABC Nightline, and she's also worked in the fashion industry with Tommy Hilfiger, JCPenney and more. So, we're glad to have her here and to share and learn from her as a member of the community. Thank you, Sarah Todd, for joining us.

Sarah Todd Hamm...: Thank you so much for having me. I'm so excited to be here.

Dr. Correa: So, your symptoms started when you were eight, but if you can remember, going back before eight, tell us some about young Sarah Todd and your childhood.

Sarah Todd Hamm...: Yes. Yes. So, my symptoms did start when I was eight, but I definitely had a great life, great childhood, fun personality as a child. I remember being super energetic and always joyful and my greatest passion was ballet. I was one of those little girls who dreamed of being a professional ballerina when people would ask me what I wanted to do and I just loved being on stage. I went to ballet class once a week after school and was always in a Christmas production and a spring production and had a yearly recital and really looked up to the dancers at my dance company who were older than me and dreamed of becoming like them one day. So, that truly was my life as a child and some of my greatest memories have to do with dance. I also really loved spending time with my mom and grandma, we've always been really close, and so that made up a large part of my childhood and was very fortunate to have such a great family and great people supporting me, back then, and now.

Dr. Correa: You really focused and highlighted your experience with dance and with ballet early on in your childhood. What do you think it meant for you, thinking of both, the role of being a ballerina professionally and the work ethic it would take?

Sarah Todd Hamm...: I think for me it was just so fun and that was all I was thinking about, was it's kind of every little girl's dream to do-

Dr. Correa: That's right. We're talking about eight years old-

Sarah Todd Hamm...: Who knows if that would've happened. Maybe it would've if I hadn't become disabled, maybe I would've stuck with ballet, but who knows how long I even would've stuck with it. If it would've been my greatest hobby and passion afterwards, I have no clue, I'll never know. But to me, it was just something I loved. And started so young, I think I was two and my mom put me in classes, and so I was able to just gain that passion really early on and it was just what I loved. So, I just saw it that way. It brought me joy.

Dr. Correa: Totally. And we will get to some, and hearing about your medical condition and health experience, but I'm just wondering now, Sarah Todd, how do you describe yourself and who is Sara Todd beyond your health experience?

Sarah Todd Hamm...: That's a tough question because we always are not as much thinking about how we would describe ourselves when we're usually thinking of how other people perceive us, which has positives and negatives. But I would say I feel like I've kept my very energetic spirit that I've had since I was a child. I'm very extroverted. I love talking to people. So, that's why I like doing engagements like I'm doing right now, speaking to other people, meeting people, learning about other people. I would say I'm very energetic and I really feel like I'm a positive person because when I am having a negative day, which doesn't happen very often, it really sticks out to me because I'm like, "Wow, I never really experience negative emotions very much," which I'm very lucky. I think that's just how I was made.

So, I'd say I'm a very positive person and I also feel like I have grown to be very confident, which my disability has actually helped me do. I can touch on that more later, but say definitely energetic, positive and confident, really stand out to how I would describe myself now.

Dr. Correa: Yeah, I want to hear more about that confidence over time. But let's go back, so you were eight years old, living the little ballerina dream, and then what happened? What were some of the initial symptoms that you felt like something was wrong or that your parents noticed?

Sarah Todd Hamm...: I was at ballet class when I became disabled, which is purely by coincidence, just so happened to be at my weekly ballet class. I had had a completely normal day. There were really no symptoms, nothing out of the ordinary. I'd gone to school that day. I was in second grade at the time. So, I went to school and actually what's really interesting is, my mom used to help me get ready for ballet class, even at eight years old, I struggled with putting on my tights and leotard just because that's difficult for most children to do. But that day I actually did it all by myself and I was super excited to go to class. So, got ready for class, went to class, and we were trying on our sidle costumes at class. So, that's why I was extra excited to be there. And I was dancing around the studio with one of my friends in our costumes and just all of a sudden got a really excruciating head and neck ache, and it was not like a typical headache or neck ache like most people might have.

It was so excruciating beyond any other pain I'd felt. And it got so bad to the point that I had to stop dancing and I was crying in the studio and my mom got called in by the teacher and she was just going to take me home to go lie down. But on my way out of the studio, I was sitting down on a bench and I was reaching down and kind of pulling my tights up a little bit to adjust them. And as I was doing that, my arms and hands just fell limp at my sides and stopped working. Completely paralyzed.

So, obviously then I turned to my mom and I tell her, "I can't move my arms." And she's like, "Oh my gosh, we're not going home" Because that was our original plan. At this point, it was 4:00, 4:30 PM and we were not very close to a hospital. So, my mom drove me to this urgent care that was about 10 minutes away and she had to buckle my seatbelt for me, get me in the car. And then on our way, I was still in so much pain and was very confused as to what was happening. We get there and I tried to get out of the car, but I couldn't walk, like my knees just collapsed under me, but I could still move my legs, I just couldn't walk.

So, my mom picked me up, carried me into the urgent care, told them what was happening, and they immediately saw me and they flew me by helicopter to the emergency room, got to the emergency room, and I was there for six hours. I kept trying to sit up by myself and I couldn't sit up. My legs could still move, but couldn't walk. I couldn't feel anything. I ended up losing sensation for about 24 hours, I got that back. And the doctor gave me Motrin for my head and neck pain, but was convinced that there was nothing wrong. So, my mom was arguing with him in the hall for hours, begging him to do something, run some tests like MRI, throwing out all those things, asking him about different diagnoses, and he just kept saying nothing was wrong.

She was asking for a different doctor, no request was honored. And so he ended up telling my mom and my dad who then had arrived that if I wasn't better in the morning to bring me back. And they discharged me from the hospital, basically kicked me out of the hospital. And so by this point, it was the middle of the night, like 11:30 p.m or so, maybe. My mom honestly thought that I had a brain tumor or something. And I have a really good pediatrician who's known me since the day I was born and cares about me a lot. And so she had just planned to take me to see him the next morning, but then I woke up the next morning and then couldn't move my legs now either. So, I woke up completely paralyzed from the neck down. So, that's the initial story. It's a whirlwind of a story.

Dr. Correa: Yes. That's just wild and it's so unfortunate, the delay and the challenges your parents had to go through just getting people to pay attention and to hear your experience and your voice.

Sarah Todd Hamm...: Yes.

Dr. Correa: And then you woke up in the morning, you weren't able to move your arms and your legs. What did your parents do? Did they take you to a different hospital? Did they take you back to the pediatrician?

Sarah Todd Hamm...: Yeah, so my mom slept with me in bed that night, and I remember when I woke up, I was super excited because I thought that everything would be better because I heard the doctor say, "If she's not better in the morning, bring her back." So, to me that kind of said he thought I would be better. So, I woke up and I was like, "Oh, it's going to be fine." I remember having that thought and then how deflated I felt when I realized, not only was it not fine, but it was worse. And I called out for my mom because she had woken up, and she called for an ambulance. My brothers, they're older than me, they were already going off to school for the day. So, called the ambulance. They came, picked me up and they took me to the same hospital because it was a children's hospital and supposedly one of the best hospitals around.

We went back and I remember my mom actually had to ask the ambulance driver to turn on the sirens because they weren't even using them, but we eventually made it. And I saw a different doctor in the emergency room there that morning and he ran all the appropriate tests. I had an MRI done, I had a spinal tap done, and my MRI showed I had spinal cord damage from C2 to T1. And we obviously had no idea why that was there, but at that time I was diagnosed with transverse myelitis because AFM wasn't really being diagnosed at that point, even though it obviously existed. So, I actually got re-diagnosed with AFM in 2018 because I had a suspicion that that's what I had. So, I made sure that I saw the appropriate doctor to evaluate me for that, but was diagnosed with transverse myelitis and then I was in that hospital for two more months before I went home again.

Dr. Correa: For our listeners, as we get to our discussion with the medical expert, we're going to go into a little bit more detail of the differences between some of the acute inflammatory and infectious injuries that can occur to the spinal cord, including transverse myelitis and acute flaccid myelitis or AFM. And so from the hospital at that point, did you go to a rehabilitation facility? Did you go home with therapy services? What was next? And how did your parents handle that?

Sarah Todd Hamm...: So, I was in the ER for that first day and then was moved to the intensive care unit. I stayed there for 12 days and I was there because they thought that I could have some impact to my lungs because I definitely wasn't breathing as well as I should have been. And I do still to this day have reduced lung function, but I was never on a ventilator or anything, they just thought I might need to be. So, I was there mostly for that. And then I had been treated with steroids, but they weren't working. So, they started me on plasmapheresis treatment and that had to be done in the ICU. So, I had, I believe five rounds of plasmapheresis treatment over those 12 days. And that was super scary for me as a child, I had never had a surgery before and they had to do a surgery to put a port in for that. And then they brought in the big machine into my room to do that treatment.

And after the first one, I moved one of my big toes. So, we realized that it was definitely working. So, the plasma freezes really helped me get my leg function back. Over those 12 days, it started to get better and I ended up being able to push a wheelchair with my legs. And that actually then helped me get my legs to be stronger too. So, I ended up then after those 12 days moving to the inpatient rehab facility within the hospital, the floor I guess, inpatient rehab floor. And I was there for the rest of my stay, so about five weeks. And there I did physical and occupational therapy every day for a few hours and really got my leg function back and then was able to walk out of the hospital at the end of the two months with some assistance. But once I got home, I never used a wheelchair or a walker or anything like that again.

And then I got some function of my arms and hands back, but not that much. I mean, I think for the maybe next two years, I still gained a little bit more strength. So, I would say pretty much ever since 2012, my arms and hands have kind of been the same. So, I can't move my left hand at all and my right hand, I can move, but not completely, like I can't do a thumbs up, for example, and it's really weak. And then I can't really move my shoulders. So, I was left with this very spotty paralysis, which AFM does often cause. So, I have this unique situation.

So, I ended up still doing therapy for that. Once I left the hospital, I did a day rehab program that was a school day hour type of program where I lived at home, but for about a month went to, that program was across the street from the hospital where I was, did therapy all day there. And then once I left that I did about three hours of therapy at an outpatient clinic by the hospital for I guess maybe a few years. And then I did eventually go up to Kennedy Krieger in Baltimore and we can talk about that too.

Dr. Correa: Yeah. So, I was wondering, you sought some specialized second opinions and evaluation and you ended up going, as you mentioned, to the Kennedy Krieger Center for Spinal Cord Injury and Baltimore. What made you and your family want to get more information and what do you think complemented some of the information you'd already received when you went to go to the spinal cord center?

Sarah Todd Hamm...: My mom is just such a go-getter and she makes things happen, and I know that she was going to do the best for me and what she thought was the best and what I needed, and I don't know how exactly she heard about Kennedy Krieger being the best. I don't know if that was from a doctor. It may have been because I believe one of the doctors who started me on plasmapheresis was actually from Kennedy Krieger and was just working at this hospital in Atlanta for a short period of time. So, she just somehow learned that this was supposedly the best place for spinal cord injury and for transverse myelitis, what we thought I had at the time. And so we booked a trip for me to go in October of 2010. So, all of this happened in April, 2010, so six months after this happened.

I think she actually wanted me to go as soon as possible, but I think it was my dad who was like, "She needs some time at home." Like, Let's let her be a bit normal. And then we went up there for two weeks, me and my parents and I did two weeks of outpatient therapy there. And the people there are just great. They're so intelligent, so smart, and having that specialization in spinal cord injuries is helpful because there were a lot of times here where we felt like people didn't really know what to do for me and what was happening, and we didn't feel that way at KKI. So, that was really helpful. We also looked into doing some nerve and tendon transfer surgeries while I was there, so we saw doctors for that. We never found a good option for that. So, I didn't have that done, but that was another reason we wanted to go.

Dr. Correa: One thing you've shared as you're kind of exploring your own experience with the world, your own mobility, your interest in dancing again. So, tell us, how are you thinking about movement, mobility and dancing with the world around us?

Sarah Todd Hamm...: Yeah, you know and like I said, dancing was my greatest passion at the time when I was little when all this happened. And when I was in the hospital, I was just really hoping that I would be able to recover and get out quick enough to make it to my dance company auditions because my plan was to audition to be a member of the company that spring. And then when that date passed, I had a recital coming up in June of 2010, and I really was hoping I'd be able to go to that. And then that date passed, so I learned that that wasn't going to be the case anymore, and then just decided that I would try to get back into dancing as best as I could.

So, I went back to one dance class and... Or maybe, I think I went back to a few dance classes at my studio, but it just didn't feel the same at all. I had to kind of adapt some movements and do things a bit differently, and I just didn't really feel super welcome there. It just didn't feel the same at all, and the people just didn't feel very understanding of that. So, I dropped the dance class, but I kept a musical theater class that I was doing before, just for fun, and then kept that because it just felt like I wasn't having to do these movements. It was just easier. It was more focused on talking and acting and singing. But then eventually stopped doing that too just because it didn't feel the same.

So, dancing then became something I just did for fun at home. As a child before AFM and then after, would put the DVDs of my company's performances in and have them on the TV and dance to them. So, I just did that and then adapted the choreography to fit what I could do, and that really helped me discover a new hobby of choreography, something I'd never done before. So, then I started making my own dances and did that for a bit. And then I guess when I got to college and got older and I found more hobbies of writing and speaking and just got busy with school work, the dancing definitely took a backseat. So, it's not something I really do as much anymore, but it does still hold the fond memories from before, when I was younger.

Dr. Correa: Well, and it's great that you've been able to kind of work on that skill of finding the things that you enjoy, exploring them more, being able to adapt and adjust to the time in the space that you have.

Sarah Todd Hamm...: Yeah, exactly.

Dr. Correa: And you mentioned writing. I was... I've written some, it's a challenge, but then I saw that you wrote your first memoir and book at age 11. So, it was kind of humbling to then see that you then also published your second and third books all by the time you were 17.

Sarah Todd Hamm...: Thank you.

Dr. Correa: What drove you so much to write and share your story?

Sarah Todd Hamm...: It's actually a cool story. So, on a visit to Kennedy Krieger and Johns Hopkins, because we went back multiple times after that first visit. I've been there like 15 times. I was there at the same time as another girl named Jen who also was diagnosed with transverse myelitis. And our moms had met on a transverse myelitis mom, like a Facebook group or something funny like that. And we decided we would just meet up because she was 14 and I was 10, so we weren't the same age, but we were close enough in age. And we became best friends so quickly. She's still my best friend. She's coming to visit me soon, and we decided to just write out our disability stories and put them together in a book. And her dad at the time was teaching English at college and he helped us self-publish it, and he edited the book for us.

And I realized how much I loved writing when I did that. It was obviously very young, I was writing it and I was 10 and it was published when I was 11, but I loved it. And we did some fun book signing events at my school, actually at the rehab facility at the hospital here, and I loved it, so I was just like, "I think I need to keep talking about this." I realized there were so many things people wanted to know, people had questions. And parents of kids with TM had read it and said it really helped them understand what their child might've been thinking and feeling and going through. So, we decided to do two more as we got older and shared our stories, like meeting each other and growing up as a disabled teenager and all the things we had to navigate, and it was just so fun.

So, that's kind of what started everything with the advocacy because I wouldn't have known that I had that hobby before. And so that's now why I'm now working on a fourth book, which is going to be another memoir, but from my young adult perspective, rather than the child perspective.

Dr. Correa: Well, we look forward to that.

Sarah Todd Hamm...: Thank you.

Dr. Correa: Now, as a young adult, how do you feel like you handle how others see you and your functional status? Maybe because of physical limitations, but how they kind of extrapolate that to more about who you are, what you can do?

Sarah Todd Hamm...: It's so funny. I feel like, I actually said to my mom the other day that I feel like in high school and in college, I know people definitely had thoughts about me, as everybody does, pertaining to disability specifically. And I knew that I might've been maybe seen differently sometimes, or treated differently sometimes, and I knew that was happening, but I never really quite cared about that. I guess what mean is that I feel like I've had good experiences growing up. I've been able to make friends, I've been able to find people who understand and who I enjoy hanging out with. But that I just somehow, and I don't know how I've done this, I just am lucky enough that if I ever really have a bad experience or something, it doesn't super quite bother me very much. And I just focus on finding people who I feel like I vibe well with.

But I also think that my disability is so unique in that, in high school and college and in those pivotal moments when you're trying to make friends and figure out who you are, people maybe weren't seeing me, in quotes, as disabled as much because I wasn't using a mobility aid. I didn't have this super outward marker that I was disabled. But there were definitely moments where I felt like it would come up when I needed to ask friends for help in high school and they wouldn't really get it. And they would be kind of frustrating about it, where then I would be like, Well, clearly they know I need help and they're not willing to do it. Like with simple things like, I remember one time needing help grabbing a water bottle from the cafeteria real quick, but this one friend didn't want to go with me because she was worried she'd be late for class. Even though I told her with my accommodations we were allowed to be late and they would understand that it was fine.

Little things like that that friends just aren't really going to get as much, at that age especially. But anyway, all that to say, I think this is something I've been thinking about a lot as a young adult because I feel like it's complicated, thinking about invisibility and visibility and how I see my disability every day of my life because I know how it affects me and I can't get away from that. And other people can kind of choose to not think about it because I'm not showing up in a wheelchair somewhere. And I don't really love that because it's such a big part of me and who I am, and it's not a negative thing to me. And I feel like sometimes people get uncomfy with it and maybe they don't know how to talk about it, and I can't fault them for that. But I've definitely experienced that in my relationships with people where there's kind of this, sometimes unspoken thing, where I feel like they don't really want to see me as disabled, even though I very much am.

Dr. Correa: I can understand that side. And you shared several experiences where, how even when you express your need or ask for help, someone might not be wanting to see you that way. But then I'm thinking also about those around you who want to be supportive, family members and caregivers, your parents, but then there's the challenge of sometimes, how do they let go? How do you work at seeking your own level of independence, or them waiting to hear from you what you need? How has that been, experience now as you're getting older and going to be even more independent?

Sarah Todd Hamm...: It's hard because my mom would do anything for me and for a long time she always would just step in and help without me even having to ask. Which is honestly kind of nice sometimes because having to ask can be exhausting, especially if she knows what I need, then it's nice to not have to voice it. But even as recently as a week ago, she and I were at a restaurant and sometimes I can open straw wrappers and sometimes I can't. And I started doing it and realized I couldn't. So, then I asked her to do it for me and she was like, "I've started not doing it unless you ask, because I've realized that you can ask me when you need me to." So, I like that for those things where it's up in the air whether I can do it or not. That now I've started trying those things first.

If it's something that she knows I need, I like that she just kind of steps in and does because it takes away the exhaustion of having to ask. But I feel like my disability and needing help from family and friends has made me closer with those individuals too. My mom and I were already close, but I think it's made us even closer because I mean, she still washes my hair for me a lot, and I just feel like I've been so vulnerable with her because of that, and I can tell her anything and I'm not shy about anything with her, and I really like that. I think that's a really beautiful thing that can come out of needing help from people.

Dr. Correa: And I like that, potential and a possibility of people both, being open to listening and letting you then share your needs. But then as you said, you being able to say, Oh, right now, you will often need or consistently need help in these ways because, yes, it could be exhausting to always be questioning, "Can I do it or not?" And then ask for help. But then I think there's also that other side of just always that all of that should always be flexible.

Sarah Todd Hamm...: Yes.

Dr. Correa: You should always have an opportunity to say, I've grown or I'm going to challenge myself and want to keep challenging myself to do this.

Sarah Todd Hamm...: Yeah. And then some of that falls on the disabled person too, to say, you kind of have to take ownership and tell the person, "Hey, I want to try doing this by myself now. Do you mind not stepping in?" Because I feel like then if somebody's used to helping you, they might feel like they're maybe being rude if they just say, "I'm going to let you try it," too. So, it kind of goes both ways.

Dr. Correa: So, then if you could go back and be there for either young Sarah Todd or your parents as someone with encouraging thoughts and reassurance when they were in the ICU, 10 days in, not knowing what's going to happen. Is there something that you would say to young parents or another young person living through this experience?

Sarah Todd Hamm...: This is a cheesy quote, but I love it because it applies to me so well, and I think a lot of other people so well, and it's something like, "Going through things you never thought you'd go through will take you places you never thought you'd get to." That is what I would totally want all of us to know back then because who would've thought that I would do pretty much like everything that's come after that? Like sitting here on this podcast today, I mean my whole career and a lot of my education and my passions are based around that. So, I think just realizing that so many amazing things will come from it is something super encouraging and... But that obviously doesn't take away from the challenges that come from it, but to know that it's not all going to be difficult is really impactful, I think.

Dr. Correa: I think you are amazing and it's hopeful to think in each of our own ways we can all be amazing.

Sarah Todd Hamm...: Yes, everyone is. I feel like I love to say to people, No matter what your circumstances are, and obviously things are going to be more difficult for certain people because of certain circumstances, but everyone can do what they want to do. I actually really believe that if you want to do something that anybody has the capability to make it happen because we're all unique and we all have something to offer.

Dr. Correa: Well, thank you, Sarah Todd, so much for joining us here on the Brain and Life Podcast and for everything that you're doing to help the community.

Sarah Todd Hamm...: Thank you. I loved this conversation. I am very passionate about this, as you know, so, love getting to share more about spinal cord injuries and all my thoughts around that.

Dr. Correa: Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org forward slash disorders.

Welcome back. Now, that was a great discussion we had with Sarah Todd, and I'm so glad to have learned so much more about her story, her experience, the ways that she's been able to use her voice and bringing greater awareness and all the progress that she is making in her own recovery. Now, today I'm joined by a friend and colleague in neurology, Dr. Kiran Thakur. She's a neurologist and expert in infections that affect the brain and nervous system. She works as an associate professor of neurology at Columbia University and has worked around the world studying how diseases like viruses and other conditions lead to serious neurologic conditions. She's here to help us in our discussion and better understanding the science behind acute flaccid myelitis and similar illnesses. Kiran, thank you so much for joining us here today.

Dr. Thakur: Thanks so much for having me, Dan.

Dr. Correa: So, before we get to Sarah Todd's own story and this condition, specifically acute flaccid myelitis, what got you interested in how infections affect the brain?

Dr. Thakur: Yeah, that's a great question. So, some of it was personal and some of it was my early professional exposure. So, on the personal side, my father is from a very small village in northern India, near the border of Nepal where there's really high rates of brain infections, actually in children, and also high rates of other infectious diseases, and he had tuberculosis of the spine. When I was growing up, I saw a lot of the effects of that, including pain and the deformity that he had. So, that was always kind of a personal connection I had, and I think probably triggered me to be interested in the field, somewhat passively, I think. And then in college I happened to work... I am not exactly sure how this came about, but I worked in an HIV clinic and it was with a neurologist, one of the kind of gurus of neuroinfectious diseases, Dr. Nagako Bovena, who's at MGH in Boston.

And that was really just a formative experience. One, I think to make me really think about medicine as a career, but also seeing the effects of HIV on the brain, on the spinal cord, on the peripheral nerves was really profound to me and inspired me to want to do neurology and infectious diseases. And I had a hard time deciding between the two, so I just combined them.

Dr. Correa: Yes, when you're having a tough time deciding, sometimes just more is more. So, we heard from Sarah, her own... Sarah Todd, sorry. Her own experience and story of, I mean something that in a way kind could sound very shocking and scary to many of us, and particularly parents of an eight-year-old just loving their dance class and then within hours having severe neurologic impairment and weakness. So, for those unfamiliar, can you take us through a little bit more about what's happening in the nervous system when a process like acute flaccid myelitis is occurring? Like what Sarah Todd Hammer had experienced as a child?

Dr. Thakur: Yeah, I agree. I mean, I think I'm a parent of a seven and ten-year-old, so I do adult neurology, but hearing these stories, I think is really remarkable. I think, especially listening to her story about being in a class and then starting to have these symptoms, which I think began, in her case, and similar to other cases that we see with what we call kind of prodromal symptoms, symptoms that really occur before the onset of what we see as neurologists. So, she had some headaches and sometimes we see kids and adults that have been affected by infections in the brain or other parts of their nervous system have fevers or respiratory symptoms where they have trouble breathing, generalized aches, and that really is when the virus is active or the infection is active in the body.

And for most people, they clear that infection. But for certain reasons, some of which we're still trying to figure out, some individuals get affected when the infection may enter the nervous system, so enter the brain or the spinal cord or the nerves, or have secondary effects because it's the immune system which is set to fight the infection will then be confused and will then attack the nervous system. And so we see those effects as well, and we see those affect the brain, the spinal cord, other parts of the nervous system. So, what we saw with Sarah Todd is that she likely had some of these early symptoms related to an active infection and then developed this pretty acute, sudden onset of weakness. It was really moment to moment, it sounded like, which we see in individuals which have AFM or acute flaccid myelitis.

Sometimes it's a little bit longer, like over a day or two that there's the onset of the complete weakness that they have. And then what's happening is that we think that the infection is affecting a part of the spinal cord that leads to the weakness in the arms and the legs. Usually it can be just the arms, it could be one arm or leg, or it could be all four limbs, like I believe she had at the beginning. And because it affects the spinal cord, we often see the muscles of breathing involved. So, we often see these children need to be on the ventilator and need breathing support early on in their acute illness because the mechanism by which we breathe is partially controlled by the spinal cord, and then sometimes there's other involvement. That's really the main component of what we saw. And so essentially that was kind of the initial sudden hit, and then it's really a recovery that we try to see through in terms of rehabilitation and treatment after that.

Dr. Correa: Now, Sarah Todd used an acronym, EBV. She pointed out later on that after seeing some additional specialists in this condition, that they brought up that there may have been a virus associated with its early presentation and when she showed up. And you mentioned that before, and many of our listeners may hear "virus" and think flu or cold, they may think of other viruses they may be aware of or vaccines that they have received. What are some of the viruses and conditions that are known to be related with acute flaccid myelitis or some of these other viral progressions of impact or injury to the spinal cord?

Dr. Thakur: So, I think the classic one that we know about from kind of the earliest moments of history is polio. So, polio myelitis, poliovirus causes a flaccid paralysis. And I think for our listeners who haven't necessarily seen polio in their lifetime, we certainly see it in certain locations worldwide. And as we have gaps in vaccines, we're more and more concerned that we're going to be seeing more and more polio myelitis, which is really a disabling illness of childhood that leads to this classic syndrome. The other infections, we kind of call polio-like illnesses because this looks exactly like polio, but it's not caused by polio itself.

It's tricky to figure out what the cause is oftentimes because when we as neurologists see these patients, as I mentioned, it's usually after the fact of the initial infection. And we're really looking at that time point into the reaction from the infection itself. So, we do a very broad workup to try to identify what the cause is. And oftentimes we have to see other samples. So, we look at the respiratory sample, we look at the stool, that's how we diagnose polio. We sometimes look at urine, although that's oftentimes not really helpful. We try to look at the spinal fluid, which is our best guess at what's happening in the nervous system, but sometimes we can't figure it out unfortunately because of the time period of where we're catching this.

Dr. Correa: And as neurologists, and as you said, sometimes we might come in a little bit later and we're often piecing together a variety of neurologic symptoms. Some of them acute, some of them might be a little more chronic or persisting or there may be progression of them. And like in Sarah Todd's case, sometimes there's someone that needs to be helping and advocating. What clues should raise a suspicion for a more concerning diagnosis, or something like acute flaccid myelitis, especially in a child presenting with such acute weakness?

And I'm wondering, as you wear two hats, both as a parent and as a neurologist, and you think of the story that Sarah Todd shared that, she was sent home initially just with Motrin and really almost the impression that her parents were given that like, Oh, this was nothing. Is there anything that you would suggest to parents or other family members to advocate and to help advocate for a child or another person who's having an acute weakness that's progressing like this for them to get additional diagnostic steps or maybe to get to the right location?

Dr. Thakur: Yeah, I mean, I think in real time, as I mentioned, it can be really challenging. I think everybody's always well-intentioned in terms of being at the front line, but it's really hard, I think, to be the providers that are providing emergency care because if you just think about it, they're seeing everything in a very busy emergency room with kids who are super sick to kids that have just a cough. And so I don't want to make any assumptions on circumstances. I think from the standpoint of advocacy from a caretaker standpoint, I think it's always helpful to tell the story in the light and hear from the patient themselves, however traumatic that is. And I think as we heard the kind of initial components of this history, of course we're concerned in retrospect, but how many kids come in with a mild headache and saying they don't feel great because they have a viral illness and they're going to get better.

I think with advocating for somebody to do a really thorough examination and evaluation in the emergency room and in the acute care setting, I think is really important. So, a lot of us take our kids because it's the easiest thing to do to an urgent care clinic, but really having someone do a physical exam, which seems less and less likely to be done these days, I think is really important to advocate for.

Dr. Correa: I think just always seeking, if you don't feel that you're comfortable with the assessment and the opinion that you've received, that's always an opportunity to ask for second opinions or to go to another center, and particularly centers with pediatric specialties if we're talking about kids.

Dr. Thakur: Yeah, exactly.

Dr. Correa: Now, Sarah Todd's story also highlights the severity and the unpredictability of recovery from acute flaccid myelitis. What kind of information do we have right now to understand about the factors that might influence who recovers, and how much, and who may not?

Dr. Thakur: I think what we see is, we see in that kind of early time period after the onset of symptoms, we do see with especially aggressive rehabilitation, that individuals will recover, at least in part. We know that children who have more severe illness, especially with breathing issues, so their respiratory muscles are involved, they need to be intubated. They're in the intensive care unit for prolonged periods of time, they tend to recover less. Also, if there's other involvement of the kind of area above the spinal cord, the area that connects the brain and the spinal cord called the brain stem, we also know that those kids are less likely to kind of really recover. But it's really that piece I think as a lot of conditions are in of really fundamentally early rehabilitation, physical, occupational rehabilitation that has been so vitally important in this condition.

And so that delay also in seeing rehabilitation as a component of the care, we know that also increases the risk for delays in recovery over time.

Dr. Correa: And once she got to the place where she was getting her more definitive care, she ended up being in hospital for two months, including ICU, a treatment called plasmapheresis, and as you said, intensive rehabilitation therapy. Have the treatment options changed and what are those acute initial treatments for acute flaccid myelitis and some of these other infectious conditions?

Dr. Thakur: Yeah, I think this is one of the most challenging parts of my job because we really have, I think, made some headway in terms of the armamentarium of treatments, but it's really around supportive care. And there's been studies that have evaluated steroids and plasmapheresis, which I think she's received and intravenous immunoglobulin, which essentially kind of clears out the antibodies that are kind of attacking the nervous system in this and other infections. And I think we've seen variable results. There's not clearly definitive evidence that this shows improvement, and that's really hard because we really want to be able to get a treatment that will really immediately have its effect. But it's complicated because, one, we're the condition after the initial infectious hit. And we know that the immune system is involved, but we're also worried that there's ongoing infection in some, at least in the spinal cord. And so what do we do at that point is really, really challenging.

There's some work that's being done on monoclonal antibodies, so essentially antibodies that are specific to the viruses. But what's tricky about acute flaccid myelitis is we often can't figure out the exact infection, and it's from a variety of infections, so that treatment might not be available or effective. So, it's complex. I mean, I want to advocate here that I think the best way to prevent infections that we have vaccines for, especially polio, is to get people vaccinated. And that is really what we know works. So, prevention, to me, is the most important thing that we can do both to prevent the neurological effects, but also to really, I think, advocate for public health in our communities. So, that's really, I think, fundamental in what we do in our program, is really around a lot of kind of education on vaccine-preventable diseases. And polio is still one of the most common causes of this condition worldwide.

Dr. Correa: And then just to ask the question that some people might have, we talked about the importance of vaccine-preventable conditions. Is there any concern that in some of these injuries, that infectious processes that affect the spinal cord, that they may have any relation or a reaction to vaccines that someone has been given?

Dr. Thakur: I don't think we have any evidence for that. I mean, there's a lot of work that's been done around the effect of vaccines. There's been a lot of work specifically with that condition I described earlier, Guillain-Barre syndrome, which affects the peripheral nerves and vaccines. But if you look at the data and the information, there's much more likelihood of having an infection and then causing the neurological effects than being vaccinating and having... So, if you look at it from that standpoint, it really is like a no-brainer essentially, that we should really be vaccinating our children. And we see a lot of issues related to that, not just related to AFM, but obviously other conditions.

Dr. Correa: And alongside of that, from your global perspective, what more can we learn from cases like Sarah Todd's, not just about the science and concerns about acute flaccid myelitis, but how we can improve care for a variety of rare and life-changing neurologic conditions and prevent the impact of more infectious processes?

Dr. Thakur: Yeah, that's a great question. I think there's a lot that can be done. I think we can learn so much from Sarah Todd. I think one of the pillars of what I think we should really be focusing on is, not just around diagnosis and early management. Which I think there's infrastructure that's needed to improve overall neurological care in the acute setting. But it's really that kind of rehabilitation piece that's oftentimes missing. So, it's not necessarily what I do as a neurologist. Like I can diagnose the conditions, but it's the people who are coming in and really providing the therapy that doesn't exist in many regions of the world.

So, we know, Sarah Todd, she was able to go to college and she has this incredible kind of positive outlook, and I think this advocacy that she does, if she was in another region of the world and had this happen to her, there's a high risk that she would've died because she wouldn't have gotten the respiratory support early on. She would've likely gotten some other infection related to being in her bed for a long time. So, wound infections, other complications.

And then if she survived, she likely would've been bedridden because she wouldn't have gotten the rehabilitation she needed to. So, that's just something striking, I think, to think about. And I think we need to not just raise awareness, but I think push the needle forward in terms of how we can improve the care for people who can't necessarily advocate for themselves.

Dr. Correa: And, in the hope that if we can learn better ways to approve the care for those with least amount of resources, we might actually be able to improve care for everyone and including throughout the United States.

Dr. Thakur: That's a good point I think, Daniel, because there's many places in the country in the US, you know, rural populations where there's no pediatric neurologist around. There's nobody who knows about acute flaccid myelitis. There's not rehabilitation infrastructure. And if we certainly have disparities here that we need to recognize. You and I work in a city where we see those every day. So, I think we need to also recognize that circumstance that I described potentially in another country is also something that could happen here in certain settings. And does.

Dr. Correa: So, you were coming back to the point of how much Sarah Todd has been able to accomplish and the awareness she's been able to bring to the community using her voice, and she emphasizes, also, that evolving language around disability. How important is it to incorporate disability-affirming communication in our communities and healthcare when discussing the opportunities and prognosis for different conditions?

Dr. Thakur: Yeah, I think this is one of the most striking things that I really was contemplating on as I was... I've been listening to her messaging for some time and reading her books. I think we, as in the medical field, so often are disconnected from the voices of our patients in terms of how they reflect upon the conditions that they have and how they're dealing with it and how they are living in their communities and living in their lives. And I think that's really a disservice. I think we ideally would have an approach that's integrated so that we could really bring those voices to the forefront of our care. I was thinking a lot about this because I was like, well, why don't we have these conversations routinely in the medical field? We have all these case conferences where we dissect the patient cases and we discuss differential diagnoses, but then we don't really get to the heart of, Well, but how's the patient doing? How are they really feeling? How are they going to get better and hearing from them on it. And I think we can do more.

So, I thank Sarah Todd because I think I'm really reflecting on how to do that in a better way, and especially for our population of individuals that have neurological infections.

Dr. Correa: Kiran, thank you so much for taking the time with us today and for everything that you're doing to bring attention to infectious conditions and how they affect the brain and spinal cord, both here in New York, and around the world.

Dr. Thakur: Thanks so much. Thanks for having me, and thanks for this session highlighting Sarah Todd and AFM.

Dr. Correa: Thank you again for joining us today on the Brain and 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 and Life magazine for free at brainandlife.org.

Dr. 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. Correa: You can also find that information in our show notes, and you can follow Katy and me and the Brain and 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 @NeuroDrCorrea.

Dr. Peters: And Dr. Katy Peters joining you from Durham, North Carolina and online @KatiePetersMD-PhD.

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

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

Dr. 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 and Life podcast. See you next week.

Acute Flaccid Myelitis and Disability Advocacy with Sarah Todd Hammer

Additional Resources

Other Brain & Life Episodes on this Topic

Follow us!

Episode Transcript