Soap Opera Star Suzanne Rogers Brings Awareness to Myasthenia Gravis

Episode Transcript

Dr. Correa:
Welcome back to the Brain & Life podcast from the American Academy of Neurology. I want to talk to you about who we spoke to this week, but first...

Dr. Nath:
Yes.

Dr. Correa:
What's your experience? Do you watch soap operas? Anyone in your family?

Dr. Nath:
Soap operas? Oh, my goodness. They were on TV when I was little. My mom says that she learned a bunch of English from watching soap operas. That's what she tells me, that they spoke slowly, and the plot lines are pretty predictable, so when she came to this country that it really helped with her English. So that's my life's interaction with soap operas.

Dr. Correa:
It's funny. So for my family, sometimes watching the Spanish novellas or the soap operas was a way for me to get some language immersion. Oh, when I hadn't been speaking Spanish for a while-

Dr. Nath:
So that means I need to start.

Dr. Correa:
... watch that with my grandma.

Dr. Nath:
I need to watch that. To improve my Spanish, that's amazing.

Dr. Correa:
Our guest, Suzanne Rogers is one of the longest running actresses in any soap opera. Oh wow. She started on Days of Our Lives at her youngest from the very early on, and when she was younger, she had no significant health issues. She had actually been a Rockette in New York, made her way out to LA.

Dr. Nath:
Wow.

Dr. Correa:
And started on the soap operas. And then while being on the show, she had the first time of a myasthenic crisis and ended up getting the diagnosis of myasthenia gravis.

Dr. Nath:
She was on the show.

Dr. Correa:
She was on the show, and she was able to rehab, get back on the show. And in throughout her life, the times that she's had problems with myasthenia, the writers have worked with her to incorporate that into the storyline for her character.

Dr. Nath:
Oh, that is so cool. Yes, let's represent what people actually go through in the media. That's fantastic.

Dr. Correa:
So it was essential in her own perspective, sharing that with the writers, working through that, people seeing someone, and that they knew in real life that had a significant health issue that were able to get back to work. And then representing that from her own experience on the screen for all of us. It's amazing to hear her whole course and it's really essential also that we get a chance to hear some of a key components of dealing with myasthenia and preventing it from the medical expert we'll also have.

Dr. Nath:
Wonderful, good for her for bringing some awareness to myasthenia gravis through the soap opera. Incredible.

Dr. Correa:
I'm looking forward that to everyone listening to this episode.
Welcome back to the Brain & Life podcast. So many of our listeners might be aware of the one of the most popular soap opera TV shows Days of Our Lives. It's one of the longest running TV shows in the entire world, and one of their most beloved characters is Maggie Horton Kiriakis. And today I'm happy to be joined by the actress Suzanne Rogers, who has played Maggie since 1973. But let's take a step back even before that, many listeners may not know that before her debut in Hollywood at age 17, Suzanne actually made her way to New York City and landed a job as the youngest Rockette to take the stage at Historic Radio City Music Hall. And during her time in New York, she also appeared in numerous Broadway musicals. And after a decade in the city, she made her way out to Hollywood and found her place where many of us know her now on daytime soap opera.
Beyond the screen and stage, she dedicated much of her spare time to helping organizations and that support the community afflicted by myasthenia gravis, a rare nerve and muscle disease that we're going to hear much more about. And she was diagnosed in 1984 and has been acting and on the screen since then. Suzanne, thank you so much for joining us today on the podcast.

Suzanne:
My pleasure. My pleasure. Anything I can do to help, I will.

Dr. Correa:
But we're so glad to have you here. Now, before a neurologic disorder like myasthenia became a part of your life, can you tell us a little bit about those early days on the stage in New York and on the screen and Days of Our Lives?

Suzanne:
Yeah. Well, my mother glued taps on my baby shoes when I was two years old. So I was destined to be a dancer. I studied dancing and someone at my dancing school, a much older girl was a Rockette. And she talked about it all the time and I thought, "That's what I'm going to do. I'm going to do that." So when I was 16, I wrote them a letter and I said, "I want to be a Rockette." And they said, "Well, you missed the auditions for this year, but write us in March of the next year, but don't bother if you don't have, thigh-high kicks a tap background, a ballet background, a jazz background, and you have a really strong tap background." And I thought, "Okay, okay, I have got all of those." So on March I wrote them a letter and I said, I sent up a picture and on April the third, I went to New York and I auditioned with 70 other girls.
I was 71 and we auditioned singularly in front of each other. We all sat down and that was nerve-racking, but it was the beginning of my career. It was pretty exciting, so that's what I did. I was doing what I love to do. I love to dance. And while I was at Radio City, I studied singing and I studied acting and I studied getting rid of my southern accent. It comes back in when I get excited or when I talk to my sister on the phone in North Carolina, but it's still there, you can't take the girl out of the country. Anyway, so that's what I did. And the Broadway shows that I was in, I worked with some wonderful people. I worked with Leslie Uggams, I worked with Katharine Hepburn. Hello, Katharine Hepburn. I worked with Alexis Smith and Dorothy Collins. And so I worked with a lot of really wonderful people and good people that taught me how to behave backstage, how to treat other people.
So then I thought wait a minute, I want to do more. I thought I can't kick up my heels forever. So I came out to California and with the show with Follies, and one of the casting directors on CBS saw me in the show and brought me in to audition for, at the time, it wasn't on the air yet, The Young and the Restless. And basically, what he was wanting to do was take a tape of that and give it to the people on Days of Our Lives because they were looking for a new character, a farm girl. Hello, Virginia Roots, so that's what he did. I guess you'd say the rest is history.

Dr. Correa:
So then young Maggie Horton made it from the country to Salem and otherwise Hollywood.

Suzanne:
And there you go. Yeah, it was 1973 when I came on the show. And in 1984, after some traumatic things I noticed, I was very nervous. My blood pressure was sky high, and one of the doctors I went to at that time said, "I don't know why you're not having a stroke at the moment because your blood pressure's so high." He sent me to a doctor at UCLA and the doctor within 15 minutes diagnosed me with myasthenia gravis. I had never heard of myasthenia gravis. And I said, "Well, just give me some pills and let me get well." I thought it was going to be that simple. So they put me on Mestinon and it didn't seem to do a whole lot. From there on they said, "Well, we are going to try some different medicines. So I tried Imuran and I tried prednisone and so prednisone, they put me in the hospital to put me on the prednisone because I guess it has hellacious side effects and they wanted to make sure I was okay.
So I went on the prednisone and then they sent me home. The doctor said, "Every morning you're to call me and to tell me, give me an update on how your day was." So I called every morning and he would say one question that I kind of was didn't understand. He said, "How did you sleep?" And I said, "It was fine." Anyway, he didn't ask why he was asking that. Anyway, one morning I said, "I didn't sleep very well." He said, "What do you mean?" I said, "I didn't sleep very well. I guess I felt like I was getting a cold." He said, "You need to come to the hospital right away." So my friends brought me over to UCLA and they upped the dosage of the prednisone and I was there for two weeks while they were trying to get - my throat closed up, I couldn't swallow anything.
They were putting the prednisone, they had to break it up and put it in a feeding tube. And I said, If I can't, in other words, in my broken speech, because that's where it affected me, myasthenia affected me from my throat, my swallowing, my speech, that what I needed to do for the show was taken away.

Dr. Correa:
Wow.

Suzanne:
So it was traumatic for me. It was very traumatic. So they did put me on the prednisone. They kept putting it down the feeding tube and after two weeks they said, "We're going to take it out and we're going to see how you do." I hadn't had solid food in I guess, a month or more, and I was afraid that I wouldn't be able to swallow the solid food. And so the nurse came in and she said, "What would you like for dinner?" She said, "The chicken's good."
I said, "I'll have the chicken." And they had mashed potatoes. I had teeny, little teeny both full of chicken. I ate everything on the plate, and I felt I was on my way to getting better because I was able to swallow and I kind of had more of a speaking voice. I mean really, I don't know if anyone he wants to hear this, but my voice was, "I couldn't speak like that." That's how I spoke. But the doctors understood what I was saying. I couldn't. And when I would pick up the phone at home, people would hang up because they thought they had the wrong number. It was all very hurtful and traumatic.

Dr. Correa:
Even though you were making progress, being able now to swallow and speak, did it feel like you were on your way back to your acting and your lifestyle before.

Suzanne:
One point they said, "We want to do a thymectomy on you because we don't want you having these flareups." Because if I got upset about something, I would flare up and things would get worse. And I'm a high strong A-personality kind of person. Anyway, they told me they were going to do a thymectomy. And the thymectomy, as you know back then it was like an open-heart surgery and I said, "No, no, no, you can't do that." I said. I wear strapless gowns and I'm in vanity, vanity. Then they said, "Well, we'll take it well we'll cut you across here and did the thymectomy." It took about a year or two before it. They really knew there were no tumors or anything on the thymectomy. There was nothing. They took that out because they felt that triggered the myasthenia. I had a doctor that said to me, "You'll never be in front of a camera again."
Now, I just wanted to say that because for me, I take everything so personally and something inside of my head said, "I'll show you." I never went back to see that doctor again because I felt that I was doing all the right things, taking the medication and he wanted to keep me on high doses of the prednisone, and I was weaning myself off of it. I mean they had me at 120 milligrams a day at one point. So it was pretty hard. So from 84 to 95 I was on prednisone. Anyway, I had to say that because it's so important to be positive to your patients, all he would've had to have said was, "Well, we hope you get back to your job, but you've got a long road." That would've been okay, but to say matter of fact you'll never be in front of a camera again, was like a stake in my heart.

Dr. Correa:
How was your transition back to work and managing with the medications and the symptoms of the medicines?

Suzanne:
It was pretty hard. I was only taking, at that time 10 milligrams every other day. After going up and then coming down very slowly, I still had the prednisone gives you moon face and the spare tire around you, it was hard. They said to me, "We'll do whatever you want. You want a soap in your room you got it. If you need to rest, you've got it." They were willing to do whatever they could. When I left the show, I was running 10Ks, I've always been a healthy person with a dancing and dada, dada, dada, dada, and then. I came back to the show, my face was large from the prednisone and the audience kept writing in what's the matter with her. So they said, We got to write this into the show. And my mother said, "No, no, don't do this, don't do this. You're doing so well. Don't bring all this stuff up again."
And I said, "I'm only going to do this storyline if it has a positive ending that I get through this, that I prove that I'm out of this, that I've beaten this, that it's in remission. I know there's no cure but it's in remission." And so that's kind of what, when I came back, that was my main goal was to make sure that nobody got me to a point where I got so upset that this would trigger the remission out of remission. So it was hard. It wasn't easy because I didn't have a lot of energy, but higher power it helped. Okay.

Dr. Correa:
What was important to you about portraying myasthenia as Maggie Horton was both supporting your own goals and hope, but also showing that hope to others. That's great. We're so glad that you had so many years in remission, and you were able to continue the work and sharing your art with all of us.

Suzanne:
My pleasure. My pleasure.

Dr. Correa:
And thank you again for joining us on the Brain & Life podcast and reaching out again to our listeners and readers.

Suzanne:
Thank you so much, doctor.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to our email at BLpodcast@brainandlife.org. And of course, you can reach Audrey and I on social media or the Brain & Life team, @Brainandlifemag, that M-A-G
Welcome back to the Brain & Life podcast. I'm happy to introduce our listeners to Dr. Nick Silvestri. He's a neurologist and nerve and muscle specialist working in Western New York at the University of Buffalo and the Buffalo General Medical Center. In addition to his hospital and clinical medicine activities, he also leads research on various nerve and muscle conditions including myasthenia gravis and polyneuropathy. His research team is working to help us all understand the causes and how these conditions progress. Dr. Silvestri, thank you for taking the time out of the lab in the clinic to join us here on the Brain & Life Podcast. This season we've started off with many great episodes, including some previous episodes with George Lopez about his peripheral neuropathy with Peter Frampton and his muscle disorder called Inclusion Body Myositis and Jamal Hill shared his path to the Paralympics and living with Charcot-Marie-Tooth disease. So what is myasthenia gravis and how is it different from these other nerve and muscle conditions?

Dr. Silvestri:
When it comes to myasthenia gravis, myasthenia is a disorder of neuromuscular transmission and basically what that means is that the impulses from the nerve that are sent to the muscle in order for it to contract are disrupted. So again, nerves normally send electrical impulses down the length of their nerve, which are transformed into chemical impulses that travel from the nerve to the muscle. And in order for these chemical signals to reach the muscle, the chemical known as acetylcholine needs to attach to a receptor on the muscle surface in order for the muscle to contract. So in myasthenia what's happening is for reasons we don't quite understand, the body's immune system is making what we call antibodies, which are proteins that are ordinarily there to fight off infection. But in the case of some autoimmune disorders like myasthenia gravis, the body's immune system is making these antibodies and in the case of myasthenia gravis, the attack is on the receptor on the muscle side. So it does not allow for this electrical to chemical reaction to occur does not allow for neuromuscular transmission to occur.

Dr. Correa:
Wow. So how many people in the world or in the United States are affected by this condition?

Dr. Silvestri:
Yeah, I'm not so sure about the world, but in the United States we estimate there are anywhere from 60,000 to 80,000 people myasthenia gravis.

Dr. Correa:
Now, that sounds like there are nerve and muscle connections all over our body. What are some of the various symptoms that can be part of myasthenia gravis?

Dr. Silvestri:
The short answer is that myasthenia can affect any motor nerve or any muscle throughout the body. However, there are some common symptoms that occur in patients with myasthenia gravis. So some of those comments, symptoms include eye symptoms and so people with myasthenia, the vast majority of them will actually begin symptoms in their eyes and almost all will eventually experience them. And so those include droopiness of the eyelids or double vision and other symptoms involving the throat and speech. So people may have problems speaking, they may slur their words when they speak, they may sound hoarse when they speak. They may have trouble chewing, like for example, trouble with textures such as meat or things that are difficult to chew like breads for trouble swallowing. People can actually choke on their food, have trouble getting their food down, shoot liquid through their nose.
Other symptoms may include weakness of the neck, the arms, the legs, as well as breathing difficulty. And one of the characteristic features of a disease like myasthenia gravis is that all of these symptoms tend to get worse the longer people use the muscle or as the day goes on. So very characteristically. People will say that they don't feel quite that bad in the morning, but as the day goes on, and certainly by the evening or the nighttime, they feel quite weak because they've been using those muscles all day.

Dr. Correa:
Does myasthenia gravis start and show up similarly in various people or you mentioned the double vision that many people might have? Is that the way it starts or are there different ways that people can start to have the condition?

Dr. Silvestri:
It comes in all shapes and sizes. It's called the snowflake disease because really no patient is the same as another, but 90% of patients will have symptoms begin in their eyes, so often they will begin with droopiness of their eyelids and or double vision and then progress from there. There's a small percentage of patients, about 10% of patients where the disease remains only in their eyes, but the vast majority of patients, the symptoms spread to other body regions. Again, the eyes are almost always affected, and I would say the second most common muscles to be affected are those muscles of speech and swallowing that I talked about before.

Dr. Correa:
How do you treat myasthenia gravis?

Dr. Silvestri:
The treatment of myasthenia gravis is definitely individualized from patient to patient. Every patient with myasthenia is so different in terms of the severity of their disease, their medical comorbidities, their age, other medications they may be on. But generally speaking, there are three broad categories of treatment. The first is surgical, and that sounds kind of counterintuitive, but it's known that the thymus gland, which is a gland in our chest, which is important for the development of the immune system, can trigger the disease or have a role in the disease. So in patients that have a cancer of the thymus gland called the thymoma, or in younger patients it's known that taking the thymus out of the chest, which by the way is not necessary to have as an adult, so we can take it away without there being consequences. So taking someone's thymus out can be a treatment for myasthenia.
More conventionally shifting from the surgical to the medical, there are two types of medications to treat myasthenia. One is our type of medicines which are called acetylcholinesterase inhibitors, and these are medications that basically try to make nerves and muscles talk to each other a little bit better. I recall that the problem in myasthenia gravis is the communication between the nerve and the muscle and these medications try to make that communication a little bit better so that the symptoms can be reduced. The other way to treat myasthenia gravis is recognizing that it's an autoimmune disorder or again, a disorder where the body's immune system is attacking itself is to manipulate or in some way interfere with that autoimmunity so that there's less of an attack on the body by the body's own immune system. Now, obviously this has to be balanced with risks such as the risk of infection, but generally speaking we're able to often fine tune a level of immunosuppression that reduces the immune attack of the myasthenia, but still allows people to fight off infections.

Dr. Correa:
Now, you mentioned some patients take immunosuppressive medications. We're living in a world now with multiple pandemics. How have you discussed managing the different immunosuppressive medications for myasthenia with your patients? In the face of everything we're living with.

Dr. Silvestri:
Very early on in the pandemic and my colleagues that we're treating patients with myasthenia or basically terrified that all of the patients we had on immunosuppressants were put at a significantly higher risk. And then point of fact, I mean people that are on immunosuppressive medications are higher risk for infection, including some of the newer issues we're dealing with such as COVID. I'm happy to say that while there certainly was a higher incidence of infectious diseases amongst patients with myasthenia, it wasn't a pandemic within a pandemic. In other words, many of our patients were able to remain on their immunosuppressant medications, do well with regard to their myasthenia and also not get COVID.
Certainly, in light of pandemics, people on immunosuppressants or people that we talk about going on an immunosuppressants, it comes up all the time and there are some newer medications that I'm sure we'll get to talk about soon that work on the immune system in slightly more targeted ways that really aim to reduce the overall state of immunosuppression and are able to focus in more on getting rid of the bad "Antibodies" that cause myasthenia while sparing some of the other parts of the immune system to allow us to be able to fight off infection.

Dr. Correa:
Are the medications used to treat myasthenia well tolerated or are there certain side effects or treatment complications that people should be aware of and consider over time?

Dr. Silvestri:
Really the answer to that question is different from medication to medication. I will say that many, if not all of the traditionally used medications to treat myasthenia gravis, corticosteroids as well as some of the oral immunosuppressants that we've borrowed from the transplant world, do tend to cause side effects both in the short and the long-term. And I think really that's most true for steroids, which has been the mainstay of therapy in myasthenia for really the past a hundred years.
Thankfully, some of the newer therapies seem to be much better tolerated both in the short-term and in the long-term, but a lot of the time, specifically when I'm treating patients with these traditional used medications, my patients are doing well from the standpoint of their myasthenia, but are really struggling with side effects and we spend a lot of time trying to mitigate those side effects, mitigate those risks while keeping myasthenia under control. So as much as there's a burden of disease, there's also a burden of treatment with myasthenia, which hopefully as we move forward with some of the newer agents that will be able to give people with myasthenia not only control of their disease but with fewer side effects and less tolerability issues.

Dr. Correa:
Now, in neurology and in many people who live with nerve and muscle conditions, there's a few conditions where we talk about this idea of a crisis event and what happens at, can you explain to us what is a crisis and maybe even better how to prevent them.

Dr. Silvestri:
Myasthenia crisis is defined as respiratory or failure or lung failure due to myasthenia, but really it can be symptoms leading up to that. So development of severe weakness, the development of swallow and trouble that ultimately culminates in breathing difficulty. Myasthenic crisis probably occurs at least on the available data in about a quarter of patients who have myasthenia and there are multiple different triggers for crisis. So a stressful episode can just trigger the crisis. Underlying infections can trigger a crisis, certain medications can trigger a myasthenic crisis, heat can trigger a myasthenic crisis. So there's multiple different ways in which people can enter crisis and really the best way to avoid it is to try to often easier said than done right, reduce stress, staying away from people that might be sick, making sure that you talk to your doctor who treats you from myasthenia for starting any new medications. And like...

Dr. Correa:
You mentioned, heat, I think many people around the world and country are dealing with significant heat waves and with climate change, we all are probably going to be living with a hotter environment and much more fluctuations in our environment. Are there specific things that you talk to your patients about and when they're in a heat wave and managing heat with their condition?

Dr. Silvestri:
Absolutely. First of all, I highlight and remind patients that heat is the enemy of myasthenia and I try to encourage people to stay indoors, stay in cool environments if they need to go outdoors to do so early in the morning or late at night when it tends to be cooler. I really stress the importance of hydration, that it's an underrated key factor in our health is staying well hydrated and some extreme examples and patients that are really sensitive to heat. I've prescribed cooling vests for hot temperatures in the past. These were vests that were initially I think developed to treat patients with multiple sclerosis, a different type of autoimmune neurological disorder, but it turns out they can work quite well in patients with myasthenia gravis as well.

Dr. Correa:
You mentioned the cooling vest but let's kind of look more expansively. Are there new developments for people who are newly diagnosed with myasthenia or like Suzanne Rogers who've been living with it for many years?

Dr. Silvestri:
We're blessed in the field of myasthenia to have three new medications approved in the past five years with several more on the horizon. I alluded to these medications a little bit earlier, but these are medications that take a little bit more of a targeted approach to treating patients with myasthenia and so far, they've done really wonders for many people with the disease. Again, those struggling with incomplete control on traditionally used agents or patients that were struggling with tolerability or side effect issues on the previously used medications. So yeah, there's a lot to be grateful for in the past few years in terms of treatment or in emerging therapies and even more hope down the pipeline with further therapies being developed for the treatment of myasthenia gravis.

Dr. Correa:
Hoping to find out that we have more options to help our patients live better with this condition. Now, sometimes it's not just the people living with the condition we mentioned before, the threat of a myasthenic crisis, and that can add significant stress and anxiety not only to the person living with the condition but their family also. What have you seen are the caregiver challenges that people face when a family member is living with myasthenia.

Dr. Silvestri:
A lot of times the caregivers want to be there to help their loved one and really to help almost shield or protect them from potential dangers that might lead, let's say, someone into crisis. So that includes risk of infection, caregivers often minimizing their contact with others or taking extra precautions to reduce the risk of spreading infectious diseases to their loved ones, to the folks with myasthenia gravis, trying to help identify triggers and reduce those triggers to minimize the risk of crisis. I think those are some ways, and again, I think that there's a spectrum of severity in the disease. There are some patients, thankfully with myasthenia that are basically asymptomatic. But on the other end of the spectrum, there are patients that are quite debilitated by myasthenia and really rely on these caregivers to provide them significant care, really help with all of their activities of daily living. So a wide variety of disease severity is something that's notable in myasthenia.

Dr. Correa:
For the people that you care for in your clinic and their families over the years. Is there something that you've learned from them?

Dr. Silvestri:
We, as doctors can always learn from our patients. I think that different triggers these things that aren't necessarily in the textbooks where you hear them kind of time and again, particularly as it relates to psychosocial stressors and the risk of worsening myasthenia. That's what they've taught me. I think that my patients with myasthenia perhaps more than any other group of patients that I treat, have taught me not only to treat the disease, but treat the complications of treatment as well. And really to treat the whole patient to remember that myasthenia is just a fraction of what they're dealing with or of their lives. There's a whole person there that needs to be treated in their totality and so I'm very grateful to those lessons that patients have taught me over the years.

Dr. Correa:
Well, thank you Nick for taking the time to join us here today. I hope the community and our listeners all learn more about myasthenia with this episode and those living with myasthenia and either themselves or their family have even better points now to help them live better with the condition.

Dr. Silvestri:
Thanks very much for having me. It's been my pleasure.

Dr. Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe 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.

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Soap Opera Star Suzanne Rogers Brings Awareness to Myasthenia Gravis

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