Recovery Through Rhythm: Jazz Musician John Stein’s Myasthenia Gravis Journey

Episode Transcript

Speaker 1:
Here's a question. Have you ever been prescribed a medication? Most likely, yes. Well, what about this question? Did you understand how it worked? The way your medication works in your body shouldn't be a mystery. Learn how VYVGART (efgartigimod alfa-fcab) works by visiting vyvgart.com/moa. That's V-Y-V-G-A-R-T.com/moa, brought to you by argenx.

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast. Now, I am no music expert at all, but I do love jazz, just the spontaneity and the adaptability that you hear of the different players working together as a group and playing off of each other. Our guest today is a jazz musician and teacher and throughout his life, has incorporated this idea of adaptability. And that carried him through, because he ended up encountering significant challenges with a neuromuscular junction disorder called myasthenia gravis.
John Stein himself shares not only his experience with the condition, the diagnosis, but how he rehabbed and got back home after an extended hospital stay and then, returning to work and his art with music. I'd also like to thank John Stein for sharing with you, our listeners, his song, No Goodbyes, in this week's episode. We'll be playing that after this intro. This song is included in an upcoming release on September 15th. You can find his music both on Spotify and Apple Music. If you want to learn more about John Stein and his music, you could also check out his website, johnstein.com, and we'll include that in the show notes
Now in the coming weeks, make sure to stay tuned, subscribe. We'll be having an episode with John Hendrickson, a journalist and writer who talks about his own experience with stuttering. And in an upcoming episode, we also feature disability activist Paula Carozzo, who shares her experience with the impact of a hypoxic brain injury as a child and how she has worked to get out there and become an advocate to fight stigma for people living with disabilities in all aspects of life, including fashion and even sports. This episode will be released in both English and Spanish and continue some of our special releases of Spanish episodes.

Speaker 3:
(Singing).

Dr. Daniel Correa:
Welcome back to the Brain & Life podcast. Now, we've had several artists and musicians before on the podcast, and today, I'm glad to be back to music once again. Joining us from Massachusetts, we have internationally renowned jazz guitarist, John Stein. He performed on almost every kind of stage, both as a solo and supporting artist. And he's also an author and a retired teacher at the Berkeley School of Music. Later, in his career, his art and quality of life was threatened by a nerve and muscle condition that we've discussed here on the podcast before, called myasthenia gravis. Thank you, John, for coming on the Brain & Life podcast to share your experience.

John Stein:
Thank you for having me. It's my pleasure.

Dr. Daniel Correa:
I wanted to go back to the beginning, for those of us who enjoy jazz and music, from your own experience in history, why the guitar? And why did you initially get into jazz?

John Stein:
I began playing guitar when I was seven years old, and my parents were fortunate to find me a very good teacher. So it's something that I did since that time of my life and always been really special for me. And somehow, after college, I ended up in Vermont. I spent about a decade living in Vermont, and I played in bands and so forth. But I kind of felt like I outgrew the music I was playing. I was playing my own music, I was composing music, but it was in sort of country rock or country folk. And I was driven to jazz at that point.

Dr. Daniel Correa:
And what is it about jazz music or your style of music that allows you to say and share something beyond speech and writing?

John Stein:
Oh, well, what is music? Music is this thing that's... Well, at a music school, you teach the building blocks of it, but in fact, it's a very emotional thing. And they say that the first instrument is the human voice. So all of us use our voices in many different ways. So at any rate, music is just really a powerful thing.

Dr. Daniel Correa:
And then, in 2021, after 40 years of teaching and playing, what was it that you first started noticing that led you to see doctors?

John Stein:
I started having some physical problems that took us a while to diagnose them, and my first problems had to do with my eyes. I was having problems with my vision. A year or so before that, I'd had a cataract surgery on one of my eyes, that really helped my vision. So when I first started seeing problems with my eyes, I assumed it was the second eye needed its cataract surgery. And so, we looked at that. I saw retinal specialists. It was quite a while before someone realized that my eyes weren't really tracking properly, but the first symptoms of the myasthenia gravis, they often apparently affect people's eyes.
And I was seeing a much poorer eyesight, and I was beginning to see something that came much stronger later, which was double vision. I would see not one image, but an image and slightly to the right or left of it, another image. And at any rate, I was finally diagnosed, but by then, I had many more physical symptoms. It started with my vision, but I had problems with my eyelids. This is very typical of myasthenia. One of my eyelids wouldn't close, and the other one could barely open. And then, when I started to have other muscle symptoms, that's when I was basically sent to the hospital, and that's when I got my first real diagnosis.

Dr. Daniel Correa:
Can you describe what were some of those initial issues and then, what happened when you had to go to the hospital?

John Stein:
Well, what took me to the hospital was I was dealing with this thing with my eye, and it was getting worse. What the other symptom was that really took me directly to the hospital was I started having problems with the muscles in my throat, swallowing food. And so, when that happened, one morning, I woke up, it was a Friday, I think, and normally, in that era, I took a multivitamin every day. And they're kind of big pills. And I went to take the pill, and I realized, "I cannot swallow this pill." And then, I went to eat some Greek yogurt or something, and I was having trouble swallowing that. So I called a doctor, and I got a nurse practitioner in his office, who had a neurological background fortunately. And she heard my symptoms, and she said to me, "Would you like me to call the ambulance right now? Or can you get to the hospital immediately on your own?" I thought that was a cool way to say that. But at any rate, fortunately, my wife took me to the hospital, but that was it. I was there for almost two months.

Dr. Daniel Correa:
You were in the hospital for some time. You had to receive, I imagine, several different types of treatments. What was that experience for you, that first time, having to be in the hospital to get treatment to prevent it from getting worse?

John Stein:
My experience was I got into the hospital, and it was still, my crisis was progressing. And every day I was there, I was worse. I went to Beth Israel Hospital in Boston. It's one of the three major hospitals. I'm there on my first morning after the night, and the doctor comes up. And he's the one that gave me my first diagnosis. He said, "We're going to do some tests, but we believe what you're suffering from is myasthenia gravis." And he says, "The bad news is we have no idea what causes it, but the good news is that we have a lot of treatments and we think we can help you live pretty close to your normal life when this is done." So I had that in my pocket the whole time. It did make it easier, but it was still, especially in the beginning, very difficult. Because I was still getting worse.
I was getting worse. When I first was there, they actually let me eat some stuff, as long as it was really soft. And I actually called down and ordered one dinner and sort of managed to eat some of it, but that was the last time I ate food for months. Because what happened is I couldn't swallow the food anymore. So then, they put a tube through my nose to my stomach. And then, eventually, when it was going to be permanent for a while, they could see that I wasn't going to recover fast enough, they put a feeding tube in my stomach.

Dr. Daniel Correa:
And from there, you also then went to rehab to work a while at getting stronger and figuring out, again, your coordination and use of your hands. How long was your experience in the rehab facility?

John Stein:
Six weeks in the hospital and then, two weeks in the rehab. I lost a lot of muscle mass and weight, just from lying in the hospital bed for two months, so I had to put my strength back. I had to get rid of the feeding tube. I had to go through all kinds of therapy to get my throat muscles to work again and my legs and my arms, just everything, a lot of physical therapy and a lot of speech therapy to get myself back together.

Dr. Daniel Correa:
All along the way, while you were in the hospital and the rehab, did you feel like you had an outlook that you're going to be able to get back to playing?

John Stein:
I was going through so much physical stuff that was unpleasant that there were times where I'm wondering, "Is it even worth it?" But I did decide that I wanted to live. And the reason I wanted to live is I wanted more years with my family and friends. And if I never played the guitar again, I made peace with that. I suspected I would be able to, but I didn't know. And I thought, "Well, it's okay if that's the way it is. I've had a really great life with the guitar, and I love the guitar. And I did a lot with it and I'm proud of it, but it's not the reason I'm staying alive."

Dr. Daniel Correa:
A major part of a singer's training and even their expression in many styles, including jazz, is their breath. It's a significant impact also for people living with myasthenia.

John Stein:
Here's the thing because I want to give a shout out. So my wife has this longtime friend. She's known her, because her families knew each other when they were children. Her name is Jean Siegel, and she went to music school. And she's spent her life in music as well. She was a music teacher, a private music teacher, a voice coach. She was an opera singer herself. Anyway, Jean came to see me as a friend in the hospital. And in the hospital, I had lost my voice, because I was intubated. Not only could I not eat on my own, I couldn't breathe on my own, and if they hadn't put a tube down my throat and a respirator, I wouldn't have survived. And I lived with the tube for several weeks, and when I came out, I didn't have any breath, I couldn't speak. She said, "John, when you get out of here, I want to give you voice lessons and breathing lessons to get you breathing again."
And I was really unaware at that moment of how powerful breathing is and how you depend on it and how you take it for granted. So it wasn't almost until I got to rehab, by this time, it was six weeks on, I get to rehab, and I'm doing physical rehab, and I'm realizing, "Man, I have to breathe to walk up and down here." I suddenly realize, "Wow, my problem, at least one of them, is that I haven't been breathing." So anyway, I get home, and Jean starts giving me breathing lessons. And thank God she did, because that's the reason I can speak today. I had a speech therapist, someone who was very good at the speech part of it, but my friend, Jean, started doing the things she does with her students when she's preparing them to do it on musical and trying to get them throwing their voices out into the room, which they're going to have to do on stage.
She does all these warmup exercises. I played bass in her pit band for a lot of years, just to help her out. And I watched these, and all of us in the pit, we would roll our eyes at how silly she was. She would make all these strange noises and asked them to... It was call and response. She would make some weird noise, and then, all the students would make a weird noise. And she would shake her body, and they would shake. And we thought it was hilarious. But she had me start doing that, and it brought my voice back. So it's really important for people who are having throat issues to work on their breathing, I think. It really helped me enormously.

Dr. Daniel Correa:
And how you're playing now and you're continuing to grow, how has your music and your play changed?

John Stein:
Yes, I've learned some things technically, maybe as a result of this, but the most important thing is I've taken some kind of step in my life of self understanding, which makes me more confident when I play, which makes me believe more in my music. Because it's my expression to myself. When I perform now, it's just I have so much gratitude to be able to do this, because it's something I wasn't sure I'd be able to do again. And when you experience it, it's an unbelievable feeling. It's very special, so I'm very happy I can do it.

Dr. Daniel Correa:
It sounds like, in the face of your recovery and along with your recovery, you ended up working on a new album and a 20 year, two disc compilation of your work. How was it really getting a chance to dive into that?

John Stein:
I discovered somebody in 2005, and I've been on his label ever since, so it's almost 20 years. I actually was in the final stages of recording a new album when I got sick, and I couldn't do it. I couldn't play. So he came to me and he said, "Well, you can't record the album you've been planning. So since you can't do that, let's put together a career retrospective. You can use music from all the albums you've released already, and we'll put it out as a placeholder this year, since you can't do the record you want to do." So that's what Lifeline was. It was last year's release. It started when I was in the hospital. It gave me something to do. I had all of those hours lying in a hospital bed. And so, once he said that to me, I had a project, and I worked on selecting the music and sequencing the music and everything that eventually became the album. And I have since gotten back to the record I wanted to make initially, and that one is being released and will be released on September 15th. So that one's already done.

Dr. Daniel Correa:
What I appreciate and I hear that's unique is, along your early growth and learning as a guitarist after your illness and even while you're in the hospital, and then, later in your recovery, you have an openness and a kindness to who you are, your own abilities, and an appreciation, and as you even said yourself, gratitude to your own sound, your voice, the interactions and relationships that you have, whether it's with your guitar, your family, or your collaborators.

John Stein:
Well, I'm trying to be the person you just described. It's a struggle, but that's a beautiful description. And if I could be that way all the time, I would be very happy.

Dr. Daniel Correa:
Thinking back to the situation, where someone else is in that first hospital stay and things are just getting worse, is there something that you would offer or say to them and their family about the possibilities?

John Stein:
Well, it's really important you get good care, and I have to tell you that I have a friend who has a friend living in California, who has the disease and has been struggling to find care. I just think it's really important, if you have this disease, to find people who understand it. There are many different treatment options. I experienced some. Some seemed really useful to me, and some less so, but I've been supervised by excellent doctors who understand and have a depth. And my PCP, let me shout out to him, because he's not at the hospital. He's a studier. He studied everything that happened to me. He read all... Copious notes, every nurse, every doctor takes. It's unbelievable. He saw things that other people didn't, and he's been overseeing my... Ever since I'm out of the hospital, he's the primary person overseeing my care now, basically.

Dr. Daniel Correa:
Well, John, I'm so glad to hear that you've done so well and that you've been stable, you're back to playing. Looking forward to listening to more of your music. You mentioned that you're releasing now that album that you've been working on. You have a name and when you're going to be releasing it?

John Stein:
Yes, please. The title of it is No Goodbyes, which is maybe metaphorical about me, but it's actually a title of one of the songs. I'm an instrumental jazz guitarist, but this record is done with the trio that I work with, the bass player and a drummer I've made several records with. But in addition, on five of the tunes, there's a vocalist who wrote lyrics to some of my songs, Cindy Scott. So I'm really proud of the recording, and as I say, the other thing about it's, and I love playing with my musician friends, we've been working together a whole lot, so that the music is tight, songs are great. And the other thing is that, because of the illness, it delayed everything by so long. We've been working on the record much longer than normal. Normally, I work up a repertoire, I go in, and I record it, and then, I'm onto the next project. But this has been three years of working on this one. So thank God it's finally going to come out, because as much as I love it, I'm ready to do something else.

Dr. Daniel Correa:
Well, we look forward to it. And thank you so much, John, for joining us today on the Brain & Life podcast and sharing us your experience.

John Stein:
Thank you. I really appreciate what you did.

Dr. Daniel Correa:
Thank you.

Speaker 3:
(Singing)

Dr. Daniel Correa:
Wow. So John just opened up not only about his own life and experiences with myasthenia, but he shared his own jazz music with us. I really appreciate him adding that extra touch to this episode. It's always fun having a musician here with us. And now, in our medical expert discussion, I'm featuring a doctor and researcher whose work in the past has been funded by the American Brain Foundation, and through that work, she's learned from the community living with myasthenia about what's important about their symptoms. And this has led to a whole career focused on what's important to the community. Dr. Carolina Barnett-Tapia is a physician and neurologist at the Institute of Health Policy and Management and Evaluation and the Department of Neurology at University of Toronto. Carolina, thank you so much for joining us here today.

Dr. Carolina Barnett-Tapia:
Thank you so much for having me.

Dr. Daniel Correa:
We've had a few episodes on myasthenia. I encourage our listeners to go back, check out those episodes to also learn some more about the basics. But for someone who's coming to this episode first, Carolina, what is myasthenia gravis?

Dr. Carolina Barnett-Tapia:
So myasthenia is a relatively rare disease, where the problem lies in the connection between the nerves and the muscles. So when people think about the nervous system and we think about brain foundation, people always think about the brain and perhaps the spinal cord. And we forget that the nerves and the muscles are part of the nervous system. So in myasthenia, the connection between the nerves and the muscles doesn't work properly, and usually, it's caused by antibodies. So for some reason, the body creates these antibodies that usually should protect us from viruses and bacteria, but they attack this connection. And when the nerves and muscles don't communicate well with each other, they become weak, and that's the hallmark of myasthenia, muscles that are weak. But one of the interesting things is that they're not constantly weak. So the symptoms change quite a bit, even in the same day. So sometimes patients feel quite strong, and if they use their muscles, they start to become weak, sometimes very quickly.

Dr. Daniel Correa:
Now, John's own history and story and build on those past discussions, he shared with us that, at his beginning, he was having issues with an eyelid drooping and having double vision. Initially, he had had a cataract surgery, his vision got better. So when his new symptoms showed up a year or two later, he thought, "Oh, it's just a cataract in the other eye." Is double vision and some of these eye symptoms a common feature? Or does it just happen in certain patients?

Dr. Carolina Barnett-Tapia:
So eye symptoms are very common in myasthenia gravis. About eight in 10 patients will have double vision and/or droopy eyelids. They're very, very common. There's lots of theories. We think that the eye muscles are actually more susceptible for the actual changes that happen in myasthenia gravis, but they're very, very common. Some patients only have eye symptoms or start with only eye symptoms. So it's not uncommon, as in this case, that patients will start with double vision and droopy eyelid. And sometimes this can precede other symptoms by years. But from those patients who start with eye symptoms, some will go and develop symptoms in other muscles. That's what we call generalized disease, and a smaller number will stay only in the eye. So overall, if you take everyone with myasthenia, two out of 10 patients will have pure eye disease, that doesn't go to the other muscles, but the majority will have this kind of generalized disease.

Dr. Daniel Correa:
Do we know who are the people who are, it's going to spread beyond their eyes to a more generalized pattern?

Dr. Carolina Barnett-Tapia:
We cannot predict a hundred percent, but there are some clues. So people who are going to generalize usually do so in the first two to three years after onset. So if it's been a long, long time, it's less likely, although not impossible. And the second thing we know is that people who have positive antibodies of do a blood test and they have this antibodies against this receptor that is on the muscle and this connection, the acetylcholine receptor, those people are more likely to generalize. So we know that, if you find that, then those patients we would follow a little bit more closely for findings of generalized disease.

Dr. Daniel Correa:
What I'm also hearing in that is that myasthenia and some people living with myasthenia falls into one of those frustrating conditions, where there are blood tests and antibodies, but they might be negative, even though they have the condition.

Dr. Carolina Barnett-Tapia:
It is absolutely true. So especially with pure ocular disease patients, with only eye symptoms, half of them will not have antibodies. So we rely on the clinical presentation and some tests that we do in the lab, where we may put a needle in the muscle, and we can measure how this connection between the nerves and the muscles is working or we give some electric shocks. But it can be hard to diagnose, in those cases, where the antibodies are negative. For those with generalized disease, the antibodies are more likely to be positive than not. But there are patients who are what we call zero negative, meaning they have myasthenia, but we don't find an antibody, which basically means that our current science just hasn't found those antibodies yet.

Dr. Daniel Correa:
Yeah. One of the things you've particularly done your work in, Carolina, is talking about the symptoms that matter to patients. We've talked about the eyes and how myasthenia can go beyond the eyes to generalize to other muscles, but it can even go beyond that. So what other symptoms are important to the community living with myasthenia?

Dr. Carolina Barnett-Tapia:
Any muscle in the body, and we're thinking about the big muscles, except the muscles in your gut, but any other of the big muscle that moves your body or your face or your eyes can be affected. And basically, that means that myasthenia can present with a very broad type of symptoms, and it's a very heterogeneous disease, meaning that patients often may look very different from each other. So common things like double vision and droopy eyelids are common, but some patients never have that. Some patients have weakness in the arms or legs. Patients often feel weakness, but also, patients sometimes feel just fatigue, that they have reduced endurance, that they still are able to do things, but they get tired more easily, their muscles become weaker. But we also need muscles to swallow, so the muscles that control your swallowing can be affected. Some people can have difficulty swallowing.
We need muscles to speak, so sometimes the voice is affected. Some patients have a very nasal voice, low volume, or hoarse voice. I once had a patient who was a teacher, who needed the microphone to teach, because her students could not hear her, because of the low voice that she had. We need muscles to express ourselves, our face to smile and to frown. So some patients with myasthenia find that they have reduced facial expression. You can have slurred speech, you can have dribbling. Some patients' neck muscles are weak. Some patients feel that they have difficulty holding their head.
In some cases, whole head drops, we call head drop, and they can have difficulty walking. So you can see that it can manifest in many different ways. Some patients have many muscle groups affected. And for reasons we don't understand, some patients have very few muscles affected, but very focal. So I have some patients who only basically have weakness in their arms, but it's that pattern of change, how it's not a fixed weakness usually, it's this weakness that gets worse usually with activity, usually worse towards the end of the day, that clues us to think about myasthenia gravis.

Dr. Daniel Correa:
And one of the things you've worked on over the years with research and with the community in various different neuromuscular centers has been developing ways to have these conversations and screen individuals for these symptoms. I'm wondering, for patients, are there resources for them to go and reference to think about and consider whether or not they're having some of these other symptoms, beyond just the muscle activity that they might think about or read about online?

Dr. Carolina Barnett-Tapia:
Yeah, I think one of the best resources for patients is from the Myasthenia Gravis Foundation of America, www.myasthenia.org. They have excellent resources from the community of experts and patients and advocates for myasthenia, with excellent resources as to what other symptoms they may expect. What the work we've done was based on observations where patients would come to clinic and tell us, "I'm experiencing this. I have difficulty speaking. I have difficulty caring for my children," for instance, "because I get weak." And we would examine them, and the neurological examination was almost normal. So we found this big disconnect between what the patients were telling us they were feeling or experiencing, based on what we were observing as neurologists. So we've come to realize that, especially in myasthenia, because the symptoms change so much, we cannot rely on what we call the snapshot of the neurological examination, because honestly, if you see a patient early in the morning and they've just had their medication, they may look really well.
But as one patient once told me, "It's not a true indication. The exam is a snapshot and doesn't really tell you of my daily life struggles and limitations." So this is what we encourage patients and what we do in our clinic is we get patients to fill a questionnaire with lots of questions about their symptoms over the past two weeks, and we find that that gives us a lot of information of symptoms. And we ask about the voice and the speech and the swallowing and the chewing and a lot of things that even sometimes patients haven't thought about until they come and fill the questions. They're like, "Oh, I didn't think this was myasthenia related." But for any individuals living with myasthenia, I would say the MGFA is one of the best resources for patients.

Dr. Daniel Correa:
How have the things that you've learned from your research and your work with other clinicians and researchers changed the way you discuss symptoms with the people in your clinic and their families?

Dr. Carolina Barnett-Tapia:
We come to rely a lot on the symptoms, because at the end of the day, the symptoms are what matters to patients. That's what they're living with every day. And sometimes, the symptoms are not myasthenia. What we do is, with every symptom, we discuss and with patients, we're like, "Okay, this sounds very likely myasthenia," and we decide on a course of action. Sometimes patients have other symptoms or other diseases that can mimic or can also contribute to some symptoms. So we try to tease out. But one of the things we do now in our clinic is we ask all our patients how satisfied they are with their disease status. So besides asking the symptoms, we ask them, on a standardized form now, if they're happy with their status. And what we'll learn is that what you think as a clinician and as a patient oftentimes doesn't go together.
Sometimes you see a patient that seems to be doing really well and you would think they should be fine, and the patient knows they're not satisfied, because for that particular patient, either the secondary side effects of our treatments or the symptoms that may look mild to us are really disabling. And sometimes it's the opposite. You see a patient that you feel they could be better, but they're like, "You know what? I'm happy with this status, because I don't want to be exposed to more toxic medications and I can live with this." So very simple question we've found that really helps us provide a more comprehensive and more global way to assess patients, I guess.

Dr. Daniel Correa:
John also shared with us the challenging course of his recovery and rehab after weeks intubated or breathing with a ventilator and then, eventually, going to a rehabilitation facility and then, his transition home. And at home, it was just him and his wife. And our care partners and caregivers are so essential, not only their perspectives, but just empowering them and being there to help support us. What are some important things for family members and care partners to consider and understand when a person with a new myasthenia diagnosis is making that transition home from a long hospital stay to back in the house?

Dr. Carolina Barnett-Tapia:
It's always very challenging, especially when someone has been very active and healthy for any disease. But with myasthenia, one of the challenges for caregivers is this kind of unpredictability that's inherent to myasthenia gravis. So other diseases have a very expected course. You either know patients are going to progressively get worse, such as ALS, or progressively better. But myasthenia has this waxing and waning a little bit. So to explain that, patients may have good and bad days. And even within the same day, they're going to have good and bad hours. So to understand that a patient may feel and look very differently in the morning versus the evening or after a nap or after taking one of the medications called pyridostigmine, which acts very quickly and gives a burst of energy, because it makes this connection more between the nerve and the muscle more effective.
So for family members to know that this fluctuations happen, so know then that's expected. And as long as patients are trending to improve, that's to be expected. To know that patients will need to pace themselves, especially at first, if they've been admitted to hospital, because they will get tired with things that probably did not make them tired before having myasthenia. So learning to manage energy is a big thing, and it's often hard, especially for young patients. Third is that sometimes myasthenia is one of these diseases that can cause invisible disability, because some patients don't look sick, they don't have something visible, they just feel very tired, they get exhausted really quickly.
So to understand that, even if they looked really well in the morning and they seem fine, they may be really, really wiped out for the day and may need to down on some things. And I think, for the family to learning those things is really useful. And we also do lots of counseling about red flags, when we are concerned that someone needs to come to see us or the emergency room. And the things that worries us the most in terms of critical illness is when there's difficulty breathing or severe difficulty swallowing. So for caregivers to know that, if those symptoms are worsening rapidly, that's something that they need to be aware of, to bring patients to care.

Dr. Daniel Correa:
How often are you balancing that challenge between an infection or other complications of the medicines that are immune suppressants, with using them to prevent the progression of the condition?

Dr. Carolina Barnett-Tapia:
Myasthenia is an autoimmune disease by nature. So the cause of the disease is dysregulation of the immune system. So the vast majority of patients will need some type of immunosuppressant or immunomodulating, and the vast majority of these increase the risk of infections. There's very few patients that can get away with only symptomatic treatment. Only the mildest patients will get away with just symptomatic treatment, but most patients will need that. So we have to balance that, and we're just being living through a pandemic. That was the main concern with, when you have a novel pathogen, but also, we live in a world where we get sick.
So even a common cold can be more complex for people with myasthenia. We explain this, and patients understand that it's part of the treatment and hopefully, with the newer treatments that we're getting, are more targeted. So we hope that, in the future, we will be able to treat more people with a reduced risk of infections, but there's still going to be higher than if you were not treated. But with a disease that causes so much disability and in some cases, can put you in a ventilator, so we counsel patients about preventing sickness or be updated with their vaccinations.
Most vaccines are okay with myasthenia if you're immunosuppressed. The only one we don't recommend is having live vaccines, but most vaccines are not live viruses. Being updated on vaccinations. Avoiding sick people can certainly help. And I have to say that I'm going to knock on wood, but even though we do see more infections, the majority of infections that we see, and we did a big study here in our province of Ontario, were not very severe. So the majority of our colds and respiratory infections are manageable with antibiotics. So sometimes they can be more complex. But what we see is that, the majority of the times, if we're aware, we can treat this patient successfully and be very vigilant of any new infections and treat it early on.

Dr. Daniel Correa:
Carolina, thank you so much for listening to the community that you're helping care for, listening to each and every one of those patients, their families, and for sharing your time here with us and our listeners, to discuss myasthenia and what you've learned from the patients you take care of.

Dr. Carolina Barnett-Tapia:
And again, thank you so much for having me. It's been a true pleasure.

Speaker 3:
(Singing)

Dr. Daniel 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 and even get the Espanol version. 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 by email to BLpodcast@brainandlife.org and leave us a message at 612-928-6206. You can also follow the Brain & Life magazine and me on any of your preferred social media channels.
These episodes would not be possible without the Brain & Life podcast team, including Nicole Lucier, our public engagement program manager, Rachel Coleman, our public engagement coordinator, and Twin City Sound, our audio editing partner. I'm your host, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea. Most importantly, thanks to our community members that trust us with their health and everyone living with neurologic conditions. We hope, together, we can take steps to better brain health and each thrive with our own abilities every day. Before you start the next episode, we would appreciate it if you could give us five stars and leave a review. This helps others find the Brain & Life podcast. See you next week.

Speaker 3:
(Singing)

Recovery Through Rhythm: Jazz Musician John Stein’s Myasthenia Gravis Journey

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