Olympic Swimmer Rowdy Gaines on His Career and Guillain-Barré Syndrome

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 & Life podcast.

Dr. Correa:
All right. So wherever you are, I'm sure the days are hot and sweaty. Welcome back to the Brain & Life podcast, listeners. And Katy, are you staying cool with maybe some trips to the beach, or the pool, or just searching water?

Dr. Peters:
Yes, absolutely. So I love swimming, so thank you for asking. It's really my favorite form of exercise. I grew up having a pool, and actually in high school I did a little synchronized swimming. It was really a lot of fun. And now my husband and I, in the summer, really for the year before the pandemic and all through the pandemic, we did and continue to do what is called Master Swim. And this doesn't mean that I'm a master, it just means you're old and can't be on swim team anymore. But if you want to improve your swimming and have a coach, we do this every summer and we meet like two to three days a week. We have a great coach, she's actually an occupational therapist for her day job, and so she's quite motivating. In fact, she's a water polo player and taught us how to play water polo, which is probably even harder than synchronized swimming. It is really tough. So, did you watch the Olympic trials?

Dr. Correa:
I got to catch some of it. I always have enjoyed the Olympics and the Olympic trials swimming, just to see the variety of events. I'm always amazed by just how gracefully they just glide through the water. And then I recall the episodes when I'm trying to swim laps and it's just like I'm slapping and splashing everywhere. It's like I have an ideal of what this super smooth, great, low impact swimming and exercise would be, and I'm always impressed by dedication and the time different swimmers put into it, or people that were on the swim team. I was the big brother of a sister on the swim team, and impressed by her getting up super early and going. I didn't always end up having the same kind of level of connection to the water. I loved going and being in it, I'm more of like a chill floater and an aspiring swimmer, but I'm not super successful at doing very many laps. My running is more the consistent exercise I do.

Dr. Peters:
Well, we may be a good team. We could do one of those sprints where you can run a leg, and then I'll swim the triathlon leg.

Dr. Correa:
There we go, a tag team. I do hope in a few years maybe it's something I can grow and get better in. But this summer we have now the Summer Olympics, many people like us enjoy watching and seeing the swim races. They're a major attraction. I know I always liked watching the accomplishments of Katie Ledecky and Michael Spitz, and of course Michael Phelps. I think many people have drawn and were introduced to this level of competition by some of these more recent swimmers. And I didn't realize that when we're watching these, we always hear different commentators who have an experience about swimming. One of those commentators connects in a way with our own community, because he, although he was an American swimmer and an Olympian himself, also has been impacted by living with a nerve disorder.
So in today's episode, I get to talk to Rowdy Gaines about the Olympics, about swimming and commentating, and just the amazing efforts that these Olympians go through, but also his own journey and recovery from Guillain-Barre syndrome, or acute inflammatory demyelinating polyneuropathy. And for all those combinations of words and letters that we just threw out, we're going to go through these with our medical expert so stay tuned towards the end for more information about this condition, and how it differs from some of the other conditions that injure our nerves.
Welcome back to the Brain & Life Podcast. Our guest today is a three-time Olympic gold medalist and former member of the Team USA swim team. He's not only been through the many challenges of competing at every level, but also various transitions throughout his life stages, including parenthood, and even the diagnosis and rehab of a condition causing nerve damage called Guillain-Barre syndrome, or its more descriptive term called acute inflammatory demyelinating polyneuropathy. We'll get into that with our medical expert later. Since retiring from competitive swimming, you may have also seen Rowdy as a commentator on CBS, TNT, ESPN, all kinds of different swimming events including the Olympics. And in fact, Rowdy will be calling the Paris Olympic swimming on NBC, Peacock and USA. Rowdy, thank you so much for joining us and the Brain & Life listeners.

Rowdy Gaines:
Oh, thank you so much for having me.

Dr. Correa:
So I wanted to go back to before all this, what got you into the pool and into the water? At what age did you start swimming, and why?

Rowdy Gaines:
Well, it's funny because I grew up in Florida, born and raised here, third generation. My parents water-skied for a place called Cypress Garden. So, I grew up on a lake and I learned how to swim when I was nine months old. I literally would crawl into the lake and turn over on my back. My parents thought it was really critical that I learned how to swim, because we did live on a lake. But I didn't start competitive swimming until I was 17. I was a junior in high school when I went out for my high school swim team, and that's only because I failed in five other sports. So swimming was just next in line, and then of course it took off from there.

Dr. Correa:
Wow. So I mean, in a way it's like your swimming just started as a part of life and making sure you had survival skills in Florida, and then you were playing around with all kinds of different sports and swimming just landed as what's next? That's amazing. So, what moved you forward into competitive swimming? What really changed your relationship with swimming in the pool?

Rowdy Gaines:
Well, I think a lot of it for me was I was going down, I don't want to say a dark path, but I didn't really have any direction in my life. I loved sports, played sports as a kid, every sport that would come along. And when you're a kid, everybody plays. But when you get to high school, you aren't good enough you're not going to make the team, and I just wasn't very good in anything. And I just wanted to do a sport, I just really loved the athletic life, and when I kept getting cut from team after team, I tried out for football, baseball, basketball, golf and tennis, and I think after the fourth or fifth one I started going in a bit of a wrong direction. And swimming was the last in line and I gave it a shot, and I just fell in love with it.
I had done it recreationally for so long, so the competitive part really started taking shape pretty quickly. In fact, two and a half years after I started swimming I broke my first world record. So it was a fast process, obviously I was blessed with that gift and I'm so fortunate I was able to find it.

Dr. Correa:
Wow. I mean, was it that you were looking for the structure of the sports, the mentorship of the coach, the community and your colleagues, and team members? What was that kept drawing you to all these different competitive sports?

Rowdy Gaines:
I think it was all of the above, I really do. I think it was something that I love being a part of a team, and swimming is thought of as an individual sport in many ways, but the team aspect is really important. I mean, two of my gold medals at those Olympic Games were on relay. So the team format was very, very important. And I don't want to say I was a loner in high school, but I was a bit of a nerd and not very social, and one of those kids that stayed home on the Saturday nights instead of going out, and swimming brought back to life, that comradery and spirit that I had when I was a kid when I did do those sports. And I think the coach was a coach that had coached the football team, believe it or not, and had cut me up once already, and developed a really good relationship with him.
And we both learned together, it was his first year coaching swimming, and I just think everything fell in place with the love I had for swimming. People ask me all the time, "What's the number one reason why you won a gold medal?" And I tell them every time it was because I love the sport, I had a passion for swimming. Every single second? No. But the consistent love I had for the sport really helped me.

Dr. Correa:
And this was in the '70s and early '80s, and it sounds like you had a childhood and growing up in all kinds of different sports, maybe that helps you build a broad athletic skill set and aerobic capacity. But you very quickly, once you found swimming, as you said, were able to get worldwide competitive status. But what do you think has changed about swimming over all these years? I mean, now it seems like athletes are super specialized very early on in spending all their time and focus on swimming, and you came to it much later. What do you think was different about your experience and what you're seeing amongst swimmers nowadays?

Rowdy Gaines:
Well, I think for me personally, you have to remember the water is part of my DNA. It's part of the fabric of who I am as a person because of the fact that I grew up around the water all my life. We would swim and water ski every single day, and my house literally was 10 feet from a giant lake and that was part of my life. So, it was something that was ingrained in me as a child, and as I grew older and older I came to appreciate the water even more. And I think again, when I think back about my parents and the fact that they kept me active, not only in the water, I learned how to water ski when I was five years old, learned how to barefoot when I was nine years old, so it just was part of my life.
It was part of our lives as a family. My younger sister was a swimmer, but she was a competitive swimmer as an age group or something I was not. And I remember, gosh, 1972, she had this huge poster of Mark Spitz who won seven gold medals and seven world records in the '72 Olympics. And I was still only 13 years old, I had not started competitive swimming yet. And again, I think that the familiarity of everything, and I remember watching the '76 Olympics, this was about three months after I started swimming, and I just started dreaming. I started dreaming like, "That's what I want to do. I want to be an Olympian." It was a crazy thought at the time because I stunk in the water, I wasn't really good, but it was a dream that started taking shape.

Dr. Correa:
And as we see some of the people doing the things that we dream about, whether that's Steph Curry playing in the NBA, athletes in the Olympics, dancers on the stage, we see how easy and graceful the movements look. And I think sometimes we don't realize how much of the work it takes to maintain, to build that up and build that skillset. So many years you were swimming, you lived at maintaining that peak body performance, but what did you learn from swimming and all the training when your body would change that you feel like impacted your recovery later on?

Rowdy Gaines:
Well, I think as I grew into the sport I learned that the process was very important, and that I felt like I had to live by the word consistency, as I said before. I think I was never perfect by any stretch of the imagination, but I became obsessed with trying to be better in and out of the pool. I mean, back then I would literally go to the library and check out every single book I could find on swimming. I don't recommend this obviously, but back then, this is in the mid '70s, I would sneak into motels. I would literally go from one motel to the next to sneak into heated pools, because they were the only heated pools in town, to be able to try to train a little extra than what we were already doing in high school. I was obsessed with doing the very best I could to try to be the best swimmer I could.
And as you said, it's not for the faint of heart, the training that you do. I was sitting behind the blocks right before my last race at the Olympics trying to figure out how many miles of swimming I had done to get to this point where my race lasted 49 seconds in the Olympics, and I had swum about 24,000 miles in eight years, which is the circumference of the globe at the equator. So figuratively anyway, I swim around the world, and so it takes a lot of training. But as you know, it not only takes a lot of training from the physical side of things, but also from the emotional mental part of the training, because that was a real key as well.

Dr. Correa:
And your training for those discrete 49s, and nowadays even faster, a few seconds of performance, but how did you deal with those many times when in training or in otherwise, because you're recovering from an injury or something, when your body's not functioning the way you feel like it should?

Rowdy Gaines:
Well as time went on, I was very blessed with some incredible coaches. I think my mentors were really the impetus in my success and literally coaching me along the way. Eddie Reese and Richard Quick were my main coaches, and they were two people that believed in me. Richard was incredibly positive. He's the one that I spent most of my career with. Never use the N-T words, can't, don't, he would refuse to use those. So, I think when you hit those valleys and when you think about life, life is full of peaks and valleys, and it certainly was true for me. I lost a lot more races than I won, that's for sure.
But I think going through those valleys, having someone that I could rely on, not only coaching me in the pool but also relying on that mentorship of being out of the water and that I could go to with problems that had nothing to do with swimming. Whether you break up with a girlfriend or you're not doing well in school, or like you said, dealing with an injury, those were things that communication was a key for me, that I was able to communicate those feelings to the person that believed in me the most.

Dr. Correa:
And that's something I think we can all relate to particularly. Now, one of those valleys that you experienced yourself that may be relatable for some of our listeners is in 1991 you had a nerve disorder called Guillain-Barre syndrome. What started with your symptoms that drew your attention to the fact that you needed to see doctors and figure out what was going on?

Rowdy Gaines:
Well, literally it all happened within 24 hours, Daniel. I mean, I literally was walking around and I had just come back from a swimming meet in Japan, and I'd swum very well there in the master's division, broke a couple world records in my age group, and had come back and I just started feeling this tingling in my fingers and toes, and literally felt like everything was going in slow motion, was beginning to go in slow motion. And so, I just thought I had the flu, or a cold or something. I didn't know what it was. But fortunately my wife, literally by the end of the 15th or 16th hour of going through this where I could barely move, picked me up, put me in the car and took me to the hospital.
And before she had done that, she had called 9-1-1 and they had gotten to a doctor, and the doctor literally over the phone, "I think this is Guillain-Barre, you need to bring him to the hospital right away." And so, I was very blessed with that person, that doctor, and also when I got to the hospital, the diagnosis, because the diagnosis is sometimes misdiagnosed, as you might say. And fortunately, I had the doctors there that got me right in and got me into the treatment plan immediately.

Dr. Correa:
Wow. And I think an important aspect for us to highlight is you describe for us within hours you went from your previous level of functioning, I mean, a high level competitive swimming, walking around independently on your own, having normal sensation, then this tingling that you described, and then it sounds like within hours after that your wife had to help you even into the vehicle and get you from one place to another. That quick functional changes is amazing.

Rowdy Gaines:
Yeah, it was really quick. That's what's crazy about it, and the fact that this all happened within a 24-hour span. The tingling, you know how when your foot falls asleep or your hand falls asleep and you have those pins and needles feeling?

Dr. Correa:
Mm-hmm.

Rowdy Gaines:
That's what I was starting to experience. And then from that, within 24 hours I was completely paralyzed. So, it was complete shutdown of the body. And so, I think the onset of it and the immediacy of it all was certainly frightening. And like I said, my wife was a blessing to me, and I mean, literally had to pick me up and put me in the car and take me in the hospital.

Dr. Correa:
And with our medical expert, we'll review how there are different types of Guillain-Barre syndrome, and how those symptoms evolve so that all of our listeners have a better understanding, and how it's different from when you just feel a nerve falling asleep in your arm. But for you, Rowdy, after they started and gave you the diagnosis, what were some of the initial treatments and tests that they told you and explained had to be done so that you can move forward?

Rowdy Gaines:
Guillain-Barre can affect different patients in different ways. Certainly I was in great shape, which helped me a lot, but my breathing started to shut down. And so, I'll never forget when I was put in the hospital they started connecting me to the ventilator, because they felt like that was going to affect me. And I don't remember who it was, and this sounds corny, but I literally felt like I had this angel of a nurse slash doctor came in and said, "You need to fight this as much as possible, because if you have to go on a ventilator it's going to make your recovery, if you recover, very complex." And so, I just all of a sudden started fighting it. Fortunately I did not have to go on the ventilator, but the treatment plan became plasmapheresis back then.
Again, and I'm not very knowledgeable with all of this. I'm not an expert on Guillain-Barre even to this day, but I know there's a sheath around your nerve, and that myelin sheath is basically shredded. So in layman's terms, I guess your nerves short circuit, and that's where things shut down. And so, the plasmapheresis is like a kidney dialysis where they take your plasma, your blood out of your system, cleanse it through the antibodies process, and then put it back into you. And I had to go through that process. And after about, oh gosh, I would do that, I was probably the hospital four or five months, and that treatment was very, very painful in the beginning and then my body almost became accustomed to it. But that was a treatment back then. Today they do different types of treatment, but 30 years ago that's what they did.

Dr. Correa:
Yeah, and it's still one of the treatments. Sometimes it's required because it can be one of the most effective. And we'll talk some more with our medical expert about the process, what it is, and some of the different treatments. But you mentioned, Rowdy, that you were in the hospital for months, and then from there it can be a significant rehab course. How was your transition trying to leave the hospital, and get back, and reframing what your idea of living at home was going to be?

Rowdy Gaines:
Well, certainly in the hospital after, I guess it was about two months I was able to start the rehab process, which I did in the hospital and started going through different physical exercises and stuff like that. Because again, I had paralysis, and so I had to learn how to walk all over again, eat all over again. I had lost about 40 or 50 pounds, and so it was a long process. But when I got out of the hospital, it's funny, I mean, I had my wife literally take me from the hospital to the pool. And I always felt like swimming was a savior to me when I first started swimming at 17, and this was going to be my savior as well in my recovery process. So she went with me, she got in the pool with me. I couldn't swim, I was just kind of floating in the pool, kind of wading and standing up in the pool. I couldn't take a stroke yet. But swimming, that aquatic therapy part of my recovery was really, really important, and I think that was a big step in the right direction.

Dr. Correa:
And when along this process did you actually think about the possibility of swimming again? I mean, as you mentioned, you were so incapacitated from the weakness. I imagine you were trying to think about whether or not you could walk. When did the idea of getting back to the pool and swimming entered your mind and in discussion with your wife?

Rowdy Gaines:
Yeah, she wasn't crazy about taking me straight to the pool, that's for sure. But I won that argument that day, and I think it was just something that the doctors certainly signed off on. They said, "Of course, you're welcome to do that. I wouldn't do it for the first day," I remember my neurologist saying, and of course I pretended like I didn't hear them. I think it was a huge blessing. Now, I will say that after about a week I had a "relapse." I wasn't sure exactly what happened, but had to go back into the hospital because that paralysis feeling, that pins and needles feeling started to relapse and things started shutting down again. So I had to go back into the hospital, this time for two or three weeks, and had to start all over again basically, but not quite as bad as it was when I originally had it.

Dr. Correa:
And one of the things that's amazing, particularly for your own story and experience is, as you said, you got out of the hospital, you just floated in the water, you began your course of returning to swimming and using that as aquatic therapy, but you didn't stop there. You got back to a competitive level.

Rowdy Gaines:
Yeah, it took a while. It took about a year for me to feel like, "Okay, I'm completely recovered from this." You know how you skin your knee or something and that scab doesn't go away for about two or three weeks? The scab for me, it took a year. Certainly for about six months it was a very slow process, but just like when I started swimming at 17 I was obsessed in recovering. I was going to do everything in my power to build muscle back, to start eating right, to start gaining weight, and of course to start to swim again. And you're right, after a year I went to the Masters World Championship that were held in Japan that summer and broke a couple world records, and felt like I was back in full recovery mode. I will say to this day, I still have those pins and needles feeling in my extremities, my fingers and toes still have that feeling of when your foot falls asleep in that kind of position.
But I've gotten used to it I guess, it's just in my DNA now is I just have that. And my hands and feet become a little bit arthritic feeling, especially when I get cold. But other than that, it happened a long time ago and I was very, very fortunate, very blessed to have made a full recovery. There are a lot of celebrities that have had it. Refrigerator Perry, who played the Chicago Bears, had it. Joseph, Heller had Guillain-Barre, actually wrote a book about it, the author of Catch 22. Cher had it. So, there's a few celebrities that have had this as well.

Dr. Correa:
It's amazing your own perspective and experience with adaptation to it, and how you were able to return to so many different things you love. I know you're getting busy and ready for the Olympics that are coming up, but before we go I'm just wondering what you've learned from this experience, from your training all over the years that impacted your own thoughts about your own brain health and aging, or what you've taught your four daughters.

Rowdy Gaines:
Well, as a father of four daughters and grandfather of five granddaughters-

Dr. Correa:
Congratulations.

Rowdy Gaines:
... I think the biggest, from a brain quest, is patience. I feel like I have a tremendous amount of patience, and I feel like I have had a tremendous amount of perseverance personally. But for me, I mean, I have to tell you, I know this sounds really cliché-ish, but I am so blessed. I have an amazing family, Gosh, I'm calling my ninth Olympic Games this summer. I got to go and swim in Olympic Games in my home country. Listen, I'm not saying everything's been peachy keen, but I will tell you that through all these peaks and valleys of my life, there have been a lot more peaks than valleys, I will say that. And a lot of it is something that I try to persevere through those valleys as much as possible.

Dr. Correa:
And lastly, when we're watching the Olympics this summer in Paris, whether we know a lot about the sport or the athletes, what do you think we should keep in mind when we're seeing how they move so that we can appreciate what they're doing, and the kind of movement and work that they've put into it?

Rowdy Gaines:
Well, it's amazing. So the Olympic Games is every four years, and this is where all the greatest athletes in the history of the world all gather together. They don't even do it every year. Can you imagine the Super Bowl being every four years? That's how big it is. And the appreciation that you have to have for these athletes where for most of them, not all of them, but most of them, like swimming, the Olympics is our Super Bowl. We don't have a World Series or Super Bowl, it's the Olympic Games, that is the pinnacle of success in our sport. And this four-year journey that they take, they have stories behind these four-year journeys. And these stories are what we try to tell the audience, because most people that tune into the Olympics really don't know much about the sports they're watching.
Some of them that they do, obviously basketball and gymnastics somewhat, track and field, even swimming a little bit, but they don't know the athletes. But I will tell you that people care. They care about the journeys these athletes have taken, because again, and the last point I'll make is most of them also aren't doing it for money. The Olympic athlete, the average swimmer makes about $24,000 a year training. So, it's not like they're getting rich doing it. There are some at the highest level, like a Katie Ledecky and Michael Phelps that have made money, but for the most part they do it for the reason I just told you why I started swimming and was successful, is because they love it. They have a passion for it, and we try to show that passion, and I think NBC has done a tremendous job over the years in doing that.

Dr. Correa:
Well Rowdy, thank you so much for sharing your own story of adaptation, your own story of your swimming experience, but particularly also all the work that you do to bring us the stories of many of these amazing athletes and their journeys.

Rowdy Gaines:
Thank you so much for having me on, I really appreciate it. Take care.

Dr. Correa:
Can't get enough of the Brain & Life podcast? Keep the conversation going on social media when you follow at NeuroDrCorrea and at Brain & Life Mag, or visit Brainandlife.org.
Welcome back. I mean, Rowdy shared with us such an amazing story about his own life and experience with Guillain-Barre, and then such an impressive recovery to be able to get back to that level of swimming. Now I'm joined by a friend and colleague from the Bronx, Dr. Mark Milstein. He's a neurologist and neuromuscular specialist at Montefiore Medical Center and the Albert Einstein College of Medicine, and we're going to be getting into a little bit better explanation about what is Guillain-Barre syndrome. Mark, thank you so much for joining us today.

Dr. Milstein:
Absolutely, Daniel. It's a pleasure to be here.

Dr. Correa:
So, Rowdy shared with us that he was diagnosed in 1991 with this condition, Guillain-Barre syndrome. Can you give our listeners a little bit of a better context about what is that condition? There's a few different names that are around about it, just to help us understand a little bit more specifics.

Dr. Milstein:
Absolutely, Daniel. So, Guillain-Barre syndrome is named after two of the physicians who originally described it, doctors Guillain-Barre, but that's not actually its official name. Its official name is acute inflammatory demyelinating polyneuropathy, a real mouthful. So, you can imagine why we frequently still just call it Guillain-Barre syndrome.

Dr. Correa:
And what part of our body, and brain, and nerves is affected by this? For Rowdy, he was just noticing changes in his ability of walking, but is it consistent in the way it presents for the patients that you see?

Dr. Milstein:
So, it can present in a lot of different ways. Guillain-Barre syndrome affects the peripheral nerves in the body, and when we say peripheral nerves we're talking about nerves outside of the brain and spinal cord. In the standard cases of Guillain-Barre, it can be weakness that starts down in the feet along with sensory symptoms, like numbness or tingling, and slowly makes its way up the body, but it also can present in other ways. It sounds like Rowdy's presentation was probably one of the standard presentations.

Dr. Correa:
You were already referring to something that I think many of our listeners and community is aware of, that often it seems like their condition and their symptoms just don't read the book, and don't follow the instructions about how it's supposed to be. So, when acute inflammatory demyelinating polyneuropathy shows up in other ways, what are some of the types of presentations or symptoms that might still make us concerned for this condition?

Dr. Milstein:
Sure. So, while patients can present with weakness and numbness starting in their feet and moving up their body, sometimes the weakness and numbness can start in the arms instead of the legs. And there are even more unusual presentations. A patient may present with facial drooping because of weakness in their face as a first symptom. Some patients even present with the condition affecting the nerves to their diaphragm first, so breathing can be a problem for them, which obviously is quite a scary presentation.

Dr. Correa:
So in the short term, if someone listening to Rowdy's story and our description has been noticing some changes in their sensation in a leg or a foot, how do they distinguish when it's something more like this condition, and we talk about it as an emergency, from some of the other conditions that injure our peripheral nerves or the nerves outside of her spinal cord?

Dr. Milstein:
So, one of the things that is part of the diagnosis of the characterization of Guillain-Barre syndrome is actually the tempo of the presentation. So, this is something that we call a monophasic illness, which is just a fancy way of saying it affects you, you get bad, and then you get good again. It doesn't have many stages after that. There's an onset and a recovery. And what we know for our patients with Guillain-Barre syndrome is that all of their symptoms have to have hit maximal effect by four weeks. Now, we don't want to wait four weeks to diagnose these patients because they can get quite weak. As I said, their breathing can be affected, but if a patient notices onset of weakness and numbness that seems to be progressing rapidly over a few days, that would be a time to seek out medical attention.
And really probably in an emergency room if it's really progressing that fast. A patient who notices numbness in their toe for a month for three months, maybe weakness of one part of their body that's not spreading to other parts of their body, those patients should be evaluated as well but probably not as emergently.

Dr. Correa:
And in the big four word name that we have, one of the words we use is demyelinating. And we've talked about demyelinating processes related to multiple sclerosis and some of the other conditions in the brain, but we really haven't gotten to that in the peripheral nerves. Are there ways that it's different, and can you help us unpack that term?

Dr. Milstein:
Absolutely. So, myelin is the substance that protects the nerves in our body. I think of it as insulation on an electrical wire. It's one of the things that keeps the signal running in your nerves without letting it leak out, the same way that would happen in an uninsulated electrical wire. Myelin is in the brain and the spinal cord, and it's also in our peripheral nerves, but it's produced by different cells in those two areas, which is why patients with multiple sclerosis, a demyelinating disease of the brain and spinal cord, don't normally have problems with their peripheral nerves. Similarly, patients with Guillain-Barre syndrome only have the myelin in their peripheral nerves affected and not in their central nervous system, not in their brain and spine. This is an autoimmune process, so this is the body attacking itself essentially, and the part of the body that's being attacked is the myelin. When the myelin is attacked by this process it breaks down, and so the signal can't transmit in the peripheral nerves as well as it was doing before. And this is what leads to our symptoms.

Dr. Correa:
Now, we've used the term autoimmune in many different instances. Do we understand really why people who have a presentation of this type of demyelinating injury to their peripheral nerves have this manifestation of this autoimmune process as opposed to one of the other many autoimmune conditions?

Dr. Milstein:
So, I'd probably have to say yes and no. We have a relatively good idea of what is happening in the body in patients who have Guillain-Barre syndrome. In many cases, they have been exposed to a relatively benign virus, something that doesn't have a major effect on their body. And when the immune system responds to that virus, it gets a little confused essentially, and starts seeing the myelin of the peripheral nerves as part of that abnormal process. And so, it starts attacking the myelin just in the same way that it was attacking the virus. The challenge is we don't know which patients are more susceptible to this happening to them. This is an incredibly rare condition to begin with, and it's hard to say why myelin is different in the peripheral nerves than it is in the brain and the spinal cord, such that this process is only an autoimmune attack there.

Dr. Correa:
And you mentioned that itself isn't a rare condition. What is it that we know about its frequency in our community, or its epidemiology?

Dr. Milstein:
Daniel, fortunately this is not a condition that most people are going to have to worry about. In fact, only a little bit more than 1 in 100,000 people will ever be affected by Guillain-Barre syndrome during their lifetime.

Dr. Correa:
Well, it's reassuring for all of us, especially when we hear how much can be impacted in our body and function. Rowdy was talking about how it has changed even how he thinks about health for his family. We talked about risk, what limited aspects that we understand about the risk. If someone who has had a history of Guillain-Barre or acute inflammatory demyelinating polyneuropathy, is there a risk for other family members or their children to be at a greater chance of having the condition?

Dr. Milstein:
So, the good news here is that the answer is most likely no. This is a condition that is, to the best of our knowledge, not genetically passed on. It is something to mostly do with the exposure to environmental cues. And so, one family member having it does not put other family members at risk. This of course, is not a contagious condition because this is the body attacking itself. And similarly, it's not something that we know people to have a genetic predisposition for, and that differentiates it from other autoimmune conditions, which we know have a strong genetic predisposition.

Dr. Correa:
And Rowdy had his presentation, his illness and treatment back in 1991, and he amazingly had a great response and was able to get back even to competitive swimming. But that was 1991, how much has the treatment changed for this condition since the early '90s, and now more recently?

Dr. Milstein:
So incredibly, Daniel, the treatment hasn't changed at all since the '90s. We have two mainstays of treatment that we use for Guillain-Barre syndrome, and they are the same treatments that we have been using for several decades.

Dr. Correa:
Wow. I mean, it's great that there's still work, and hopefully over time science tells us even more about the condition and we might have more targeted treatments. Is there something unique about the stress of the situation when someone comes in and they're losing progressive function? Whether it's their legs or of another part of their body, or even their breathing, and that the overwhelming situation of everything that's going on, that you feel like people aren't always as aware of in those initial discussions, is there a gap in their understanding or some of the information people should know more about this condition in those hurried first few hours and days?

Dr. Milstein:
I think the challenge with this condition is that because there a specific health risk for having this, people with other medical conditions don't necessarily get this condition. Being healthy or unhealthy does not put you at higher risk of having this condition. Everybody who develops Guillain-Barre syndrome develops it as a surprise. There is no patient who can say, "I think I'm going to get Guillain-Barre syndrome." And because of that, those first few hours, and particularly those first few days to a week, can be very scary for a patient. There is a loss of control, it takes us a little time to diagnosis. Fortunately not a very long time, but it does take us some time where there is uncertainty for the patient.
And when you put together weakness that is progressive throughout the body, potentially difficulty with breathing or with facial movement, eating, chewing, swallowing, these are things that are very frightening symptoms for the patient. And it's our responsibility, as the neurology team and frequently with our partners in the emergency room, to help walk the patients through this, to let them know what the process is going to be, what we're going to be doing to support them during this acute period, and what we can do to help them get better afterwards.

Dr. Correa:
And let's talk about that afterwards. What is the typical time course for improvement and return to some of the activities that people were doing before they came into the hospital?

Dr. Milstein:
So with Guillain-Barre syndrome, the rate of improvement and the degree of improvement has a little bit to do with how severe the condition presented in the individual patient. Some patients will just develop weakness in the lower half of their legs along with some numbness, and the disease doesn't progress past that point and they're started on treatment, and they may recover more quickly in the following weeks to a couple of months. A patient who has a more standard presentation where the weakness has progressed to involve the legs and the arms, those patients take a little bit longer to recover, definitely on the months range. And if the disease progresses far enough that breathing was impaired, those are the patients who are going to take the longest to recover. And so for most patients, we tell them that their maximal recovery will occur over the year after their disease presented to them. Fortunately, many patients will recover their function entirely. Some patients, particularly the ones who are more severely affected, may be left with some residual weakness or numbness in their body.

Dr. Correa:
So many, it seems like in this situation, we'll likely end up getting some level of rehab facility support, or acute rehab that we've talked about in the past. Now, when I'm reflecting and thinking about we've had interviews with lots of different people who peripheral nerves and muscles are affected in different ways, and one of those conditions being myasthenia and an impact of the neuromuscular junction, and some people might see some similarity in this progressive weakness and it affecting their respiration or their breathing. So, let's reflect back on how this is different from that condition.

Dr. Milstein:
Absolutely. So, I think there are a lot of different ways that myasthenia gravis and Guillain-Barre syndrome can feel like similar conditions, but there's a few ways that they're very different from each other as well. Both are autoimmune conditions, but in the case of Guillain-Barre syndrome, as we've been talking about, the autoimmune attack, if you will, is on the myelin, the insulation around the peripheral nerves. In myasthenia gravis, the problem happens at the connection between our nerves and our muscles, the neuromuscular junction, and the antibodies are affecting that part of the nervous system. Additionally, myasthenia gravis for most patients is an ongoing condition, something that they have to manage for most of their life. And they have fluctuations in the disease course where sometimes they're doing a little bit worse, sometimes they're doing a little bit better, but the majority of patients with myasthenia gravis stay on medication to control their symptoms for many, many years, as opposed to our patients with Guillain-Barre syndrome, who will be treated in the acute presentation period. But then all of their treatment afterwards will be focused on rehabilitation and therapy, as you mentioned.

Dr. Correa:
Good to have that distinguishing characteristics for people when they're hearing people's stories and their experiences, and how they're different. We've mentioned that you're a neuromuscular specialist, so let's get back to understanding that> Why do we need a neuromuscular specialist?

Dr. Milstein:
So the nervous system, which should be no surprise to anybody who listens to this podcast, is a pretty complicated place. And it courses through your entire body, from just underneath your skull all the way to the tip of your toes and your fingers you have nerves running through the body. And what we know is that different conditions affect different parts of the nervous system. When we think about something like a stroke, we know that that's a disruption in the blood supply to the central nervous system, usually the brain, sometimes the spinal cord. When we think about our autoimmune conditions such as multiple sclerosis, that also affects the central nervous system, but very differently from the autoimmune conditions that we're talking about now, Guillain-Barre syndrome, and myasthenia gravis.
Because of the depth and complexity of all of these conditions and the fact that the treatment modalities for these conditions is so very different, many neurologists have chosen to focus their professional attention on one half of the nervous system or the other, the peripheral nervous system or the central nervous system. I have joked with my colleagues in stroke that they are the plumbers and we are the electricians, and they seem to agree with me on that one. But really the important thing is just like all of the different organ systems in the body have their own specialists, all of the different parts of the nervous system have their own specialists as well.

Dr. Correa:
And at the same time though, you also work as a general neurologist for much of the time. And so, how is it when you feel like you're putting one hat on versus the other?

Dr. Milstein:
I think it's very exciting. I never wanted to give up general neurology, because I really am fascinated by the whole nervous system. I love working with the patients in our community regardless of the problem that they are presenting with. And so, it's a real honor and a privilege that I get to take on general neurology. But I will admit I'm not an expert in every part of general neurology, and I'm very fortunate to work at such a wonderful institution where I have great colleagues, such as yourself, Daniel, and our many other team members where we can put our heads together and think about the best diagnosis and treatment plan for a patient. When I get to do my neuromuscular work, that's when I feel like I'm wearing the total expert hat. And even in that situation, we have a whole team of neuromuscular experts at the hospital, and we frequently have to put our heads together to come up with a plan for our patients. So it's same hat, different colors, but they're both exciting parts of my job and I really feel fortunate that I get to do both of them.

Dr. Correa:
And you referred to working and supporting the different people in our community. I'm wondering from the community of patients and families who live with different neuromuscular conditions, is there something that you've learned about how they approach their own health and recovery?

Dr. Milstein:
So, I have found that an informed and educated patient, and when I say that I mean a patient who has been given all of the tools that we can give a patient to take care of their own condition, is usually the best advocate for themselves for their needs, and really also for their fellow community members so they can say, "This is what happened to me, this is the care you need to seek out." Neurology is scary to most patients. Most of the conditions that affect the nervous system are things that can make a patient very anxious, and frankly make some of our colleagues anxious too. Neurologic conditions are incredibly variable, as you said, they don't always go by the textbook, and we have new treatment modalities coming out seemingly almost every year to treat conditions that we've been diagnosing for many years. So, there's a lot of information to keep up with and a lot of knowledge that we have to pass on.
We have to make our patients part of that treatment team. If it's just the doctors, and the nurses, and the therapists and all of the other team members working together and then they just tell the patient what they have to do, that's not a patient who's been best set up to recover or take care of their particular diagnosis. If we make the patient part of the team, if we explain to them, "This is what's happening in your body right now, here are the different options, here's what we think, but now you can ask some questions and decide what you think is going to be the best option for you." When you involve the patient like that, I think the patient has the maximal chance of taking on their own individual condition and recovering the best possible way.

Dr. Correa:
I completely agree, I'm always amazed by the capacity of people to both recover and just reinvest in their own quality of life. Rowdy shared with us his own experience of getting back to competitive swimming. I've seen patients get back to many activities that they love. Do you recall any athletes or young athletes that you have helped take care of or care for that, after the recovery of their condition have gotten back to either an adaptive sport or the sport that they were doing before?

Dr. Milstein:
So, I would love to say that I have taken care of some Olympic level swimmers who have gone back to compete on that stage, but I have not been so fortunate. But because this is a disease that can occur in younger patients, we've certainly had some college athletes who have had to bench themselves while they've had the condition, and been able to be back out on the basketball court, be back out on the baseball field for the next season, having gone through their recovery. And that's of course, not just very exciting for the patient but very rewarding for the whole medical team because we know that we've really successfully helped a patient recover from what can be a very scary condition.

Dr. Correa:
Well, I know we're all excited for the Olympics coming up, and thank you, Mark, for taking the time to discuss with us this condition, how it's unique from some of the other ones we've discussed, and for everything that you do for the community and the families that you support.

Dr. Milstein:
Absolutely Daniel, and thank you so much for having me today.

Dr. Correa:
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. Don't forget about Brain & Life [Spanish 00:54:10]

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 & 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. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina, and online at Katy Peters MD 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 strive 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 & Life Podcast. See you next week.

Olympic Swimmer Rowdy Gaines on His Career and Guillain-Barré Syndrome

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