Self-Discovery and The Lost Voice with Songwriter Greta Morgan

Episode Transcript

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

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

Greta Morgan - The Artist:
Know that you're an artist, you're the hardest one to deal with. Everything that you conceal is revealed on your canvas. You find all of your...

Dr. Correa:
All right, once again, we have teased you with new music. So that's not a new theme for the show. We are bringing you music from another guest and artist. We're so happy to bring you another musician. You know that we enjoy speaking with and hearing with musicians about how they live better with their neurologic conditions. And in this episode, we include three of Greta Morgan's songs from different points in her career. You just heard a clip from The Artist by Hush Sound, and that was when Greta was 15 years old, a very early example of her voice and singing.
And after my interview with her and before the medical expert, you'll hear Face in the Moon by Springtime Carnivore after Greta's interview. That was a height in her career. And you'll hear, and she shares some of her own experience touring and singing with Springtime Carnivore and many other bands. And then we'll close out the episode after the expert interview with Vanishing Path by Greta Morgan. We get to hear there an example of how she has been exploring singing after her diagnosis of Spasmodic Dysphonia and what she calls her new voice. Katie, have you listened to NPR, Diane Rehm maybe on NPR over the years? Or maybe you've heard Greta's own music?

Dr. Peters:
Yes, I do. Like listening to NPR, it is a great resource and I particularly like... Wait, wait, don't tell me. I guess I like game shows and I want to remind everyone I have a great interview that we had with Will Short. He's a puzzle master for the New York Times Crossword Puzzle, but he also does the Sunday Puzzle for NPR. Daniel, do you have some faves on NPR?

Dr. Correa:
Well, for a long time I lived in DC. I was a longtime listener of the Diane Rehm Show and her voice over the years. I also love a show called Death, Sex and Money, where they share and talk about some of the difficult topics we don't typically share.

Dr. Peters:
Yikes.

Dr. Correa:
And with the Diane Rehm show, listeners of her show over the years heard and experienced the challenges she had with her voice and managing a condition called Spasmodic Dysphonia. And our guest today, Greta Morgan, is a musician and singer who's just released a book sharing her own experience about losing her voice, redefining what meant for her and who she was, and how she shares her voice and purpose in the arts.

Greta Morgan - The Artist:
Everything that you conceal is revealed on your canvas. You find all of your ugly meanings in the things I found beautiful. Do you see the fall is coming, come on, falling into you. Do you see all of these things I'd never have known? Love will turn out the lights...

Dr. Correa:
So we're back with the Brandon Life Podcast and we're so glad to continue that musical experience that we often have. And today on the podcast, we're delighted to welcome songwriter and storyteller Greta Morgan. She's known for her work fronting bands like The Hush Sound and Springtime Carnivore, and a touring member of Vampire Weekend. Then in March 2020, when all of us started dealing with a lot of new things and uncertainty after contracting COVID-19, she was diagnosed with spasmodic dysphonia, a neurologic disorder with no cure and impact someone's ability to speak, and in her case also sing, reducing her voice to a hush and setting her to a instance where she had to explore a new voice. In her memoir, The Lost Voice, she chronicles this profound loss, her own journey, and coming back to herself. Through her story, Morgan explores identity, creativity, healing. It's a great read for us and we're glad to have her here. Thank you, Greta, for joining us today.

Greta Morgan:
Thanks for having me. I feel like I'm getting a free doctor's appointment.

Dr. Correa:
Well, so let's start. I have to admit our team member here, Emily was super excited having you on. I was like, "Oh, I don't know who Greta Morgan is."
So for other listeners who haven't heard of you, maybe only heard of a few of the bands that you've played with, who is Greta Morgan before any of these things entered and interrupted your view of yourself?

Greta Morgan:
Yes. Well, Emily, the wonderful behind the scenes guide of Brain and Life podcast, she knew my band, The Hush Sound, which was my first project that I started in high school. I got signed when I was 17 and went on an arena tour opening for the band Fallout Boy, while I was still a senior in Catholic high school. So I had a very quick entry to the music world. And then I was a professional singer and songwriter my whole life until 2020. So from 15 or 16 when we started the band to 30, 32, and I considered myself kind of a road dog. I imagined I would just make record after record, do tour after tour. I had made eight records with three bands. I joined the touring lineup of Vampire Weekend. And with them I spent two years playing all of the kind of bucket list venues that musicians want to play.
We headlined Madison Square Garden, we played Red Rocks, the Hollywood Bowl. It was really like the stratosphere of the music industry. It was an experience I hadn't had in other bands, and also just a wonderful personal experience and a real broadening of my kind of sonic and musical abilities. So as we were nearing 2020, I was spending basically every free hour hungrily writing my next solo record. I had learned so much with playing with Vampire Weekend and playing with them, playing these huge joyous shows and had really ignited a fire in me that I wanted to have a bigger career for myself when the touring cycle with them was over. So I was writing solo songs and doing really intense vocal training, and I had blinders on. I was singularly focused on music and my next record, and I was under the impression that I was sort of climbing to the summit of my voice and my musical powers, and just bam, the avalanche knocked me right off the mountain.

Dr. Correa:
Wow. And I wonder, did your perspective of yourself and how you define yourself change when you started to hit this level of success? I mean, how would you have described yourself before, like when you were a musician who wasn't necessarily in this stratosphere?

Greta Morgan:
Well, I always really loved music and I always had what I felt like was a very rooted, grounded sense of myself. I didn't think I was super susceptible to ego fluffing, but I will say when I joined the band, I was just very proud of myself. I was proud of the musicality that I had to develop to play with them. We had a 96 song set, we played different songs every night. So I was really proud. I mean, I spent 10 hours a day learning their songs, many by ear when we started, when I started playing with them. So I felt a real sense of confidence and pride in my music abilities.
And also, I was just having so much fun that I felt great about myself in that way. I also think I was susceptible to our western model of culture, which tells you that your purpose is whatever your profession is. It kind of conflates like, oh, well, if you're successful, well you must have access to your soul or something like that. I feel like there's this conflation of success with meaning, which is not true. And the one kind of dangerous thread of thinking that I had at the time was, the more successful I am, the more love I will gain, the better I will be. And of course, that idea of constant growth is completely unsustainable in any way.

Dr. Correa:
You mean we can't constantly grow?

Greta Morgan:
I think we can grow spiritually. I think we can grow inwards. I don't think any organism can grow outwards forever and ever, other than I guess the universe can.

Dr. Correa:
Yeah, I think it's an idea we're all working on.

Greta Morgan:
Yeah, right.

Dr. Correa:
So in your upcoming memoir, expected to release May 20th, The Lost Voice, you share your experience with spasmodic dysphonia. Can you describe the initial subtle changes you noticed in your voice after contracting COVID-19, in the middle of when nobody knew what was going on in March 2020?

Greta Morgan:
Yeah. Well, I will say backing up on the runway a little bit, in January of 2020, the band played in Australia and we landed there during this country's worst wildfire season in history. And I noticed when I was warming up my voice, there were these tiny flickerings in the high register, just this little tightness and a lack of access, and I kind of wrote it off to travel and jet lag, and maybe I was dehydrated and I decided to stop thinking about it. I was able to sing and play the shows, and everything went well. And then after I had this extremely high fever in March of 2020, when we returned from a festival in Florida, which was later known to be a hotspot, a COVID hotspot. After that, my voice started doing things that I could not control. It felt like top half of my range was basically gone.
It would sound like a screech when I was trying to sing up high. If I tried to push for a note, it felt almost like there was a hand on my throat kind of strangling, cutting off the sound, choking off the sound. And I didn't know spasmodic dysphonia existed until I was diagnosed, which was many months later, October of 2020. So I just thought it could be stress, it could be any number of things. I had found out my house had mold in it and had to move out of my house. I thought, "Oh, it's stress and it's mold, and it's this and it's that, and it's all these other things." I did not yet realize how common it is for people to have intense voice changes after very high fevers. Really, really high fevers can just flip a switch in the brain.

Dr. Correa:
All of this started in the middle of when we were just trying to cope with what was going on in the medical system and understanding the variety of the symptoms, conditions, and co-morbidities of COVID-19. How was it for you navigating the health system to receive more information about your symptoms and your eventual diagnosis?

Greta Morgan:
I'd say 2020 till 2023, nobody was making the connection between COVID and spasmodic dysphonia. So I was being treated by ENTs and neurologists, and no one yet had said, "This could have been caused by COVID."
What they did say is, "All the time, we see patients all the time who have a condition like this activated by a high fever."
So in a way, they were indirectly saying, "COVID could have caused this, but we just know because of the fever." It was only when I joined the long COVID program at the Mayo Clinic in Rochester, Minnesota, which is overseen by Dr. Ryan Hurt, who was really amazing. It's only when I joined that program to treat other physical long COVID symptoms that he said he at that time had treated 3000 patients and had seen dozens of people with voice changes, but none of them were professional musicians.

Dr. Correa:
Let's discuss, Sue, we're going to discuss further with the medical expert in the second part of the episode, more about what is spasmodic dysphonia as a diagnosis, some of the things that lead to it and its management. But as someone whose identity and career is so deeply tied to singing and expression vocally, what was it like to actually get the diagnosis and to find out what the condition was after so much uncertainty for a few years, it sounds like?

Greta Morgan:
Yeah. Well, the period of uncertainty before the diagnosis was actually six months. So it was from March of 2020 till October of 2020. That's when I was diagnosed with spasmodic dysphonia, but it was in 2024 that the doctor suggested, "Oh, COVID actually could have triggered this."
But when I went to the diagnostic appointment in October of 2020, I was so optimistic. I thought, "Oh, I have friends who are singers. They've had to go on steroids, because they have inflammation in their, I bet it's something simple like that." I just thought, "Oh, I'm going to get the cure. I'm going to come back and I'll be able to sing in a couple of days. This will be great."
And when I went to the appointment and he heard me sing a scale, there was immediately this knowing look, like I could tell he knew what it was right away. And he wrote down the diagnosis, we did another hour worth of diagnostics and worth of recording. He was very, very thorough. This was at the Bastian Voice Institute in Downers Grove, Illinois. And then he diagnosed me with spasmodic dysphonia adductor. And he said in my voice, it was primarily in my singing voice. A lot of people with SD have it primarily in their speaking voice, but they can actually sing. Whereas I had the kind of opposite experience, and he played me a sort of an intro to spasmodic dysphonia prerecorded video, like an informational video that they had made for patients.
And when I was watching people speak, I immediately recognized the sound and texture of their voice as a slightly accelerated version of what I had been experiencing at the time. So when I recognized, "Oh my God, this is what I have, and he's saying it's lifelong, and he's saying there's no cure."
He's saying, "The only treatment is to inject Botox into your vocal cords, which sometimes works, sometimes doesn't for singers."
I felt like a guillotine landed in my life. And before the guillotine, it was like I knew exactly who I was and exactly what my purpose was, and exactly what my joy was. And when the guillotine landed, I just had this sense of I have no idea who I'm to be after this. I hadn't gone to college, I didn't have a backup plan. I had worked my whole life at music to reach this point, and it felt like the ground was being pulled out from under me.

Dr. Correa:
Yeah. So at that point, even though you were feeling that level of disconnection, did you feel like there was just no option and you were forced into acceptance of that? Or were you still holding on to let's see how the different treatments and therapies work, and still hoping that you can get back to that definition of self?

Greta Morgan:
Oh yeah, 100%. I was like, "I don't believe doctors when they say someone has a lifelong condition." I was kind of like, "I'm going to give you the side eye about that a little bit." And of course, I went and got a second and third, and fourth opinion, and did all that. But I just thought, "You know what? The body can do miraculous things. Mind over matter. I'm going to heal myself. I'm going to heal my body."
And I spent months doing speech therapy, doing EMDR, doing vagus nerve toning, going on more cleanses than Gwyneth Paltrow. When I joke in the book, no shade to Gwyneth, I love a good cleanse, but I was doing every detox, cleanse, healing protocol, everything I could possibly do. And I did that for about, I guess about nine or 10 months. And then I finally decided to try the Botox vocal injections, and I started getting Botox injections and then did it for multiple years, probably two years or two and a half years for a spasmodic dysphonia vocal injection. They put a certain amount of units in each vocal cord to sort of paralyze the vocal cord, so that it doesn't involuntarily slam shut, which is what happens in SD.
And I did have a lot of success and improvement with the shots, but right now I'm not getting them. Right now I've been singing and writing with my new voice, my different voice, the new voice that I'm working with. The vocal injections are not covered by insurance. They're quite expensive. I have to go to a specialist, which means I have to travel. There's weeks of whispery voice loss afterward, and then a lot of vocal training recovery to be able to access it. And since my speaking voice has improved so much in the last year and a half, I've been able to move through my life with enough access. So that's why I'm not getting the shots right now.

Dr. Correa:
So at this point, you've kind of rehabbed to a point where you're not doing the shots.

Greta Morgan:
Right, yeah.

Dr. Correa:
And what do you do and what have you found helpful to help you now navigate the day to day variability of your voice, both for speaking or as you're exploring more of your vocal exercises in use?

Greta Morgan:
Yeah. Well, day to day I do vocal routines and I also rest. So even knowing that I was going to talk to you for 30 or 40 minutes, I've been vocal resting for a couple of hours. My voice usually feels pretty fresh, and then I'll do some warmups before coming on. So I've been doing a lot of vocal rehab and therapy. That's really helpful. And then I've noticed things like reducing stress, reducing caffeine, getting enough sleep, all the basic things that improve the functioning of the body really help my voice. And I have had to reach this place. I do still sing a lot, but I have not yet recovered the kind of joy and effortlessness that I used to have.
When I'm singing now, I experienced the most joy when I blast a record in my headphones and I sing along to it, and I actually can't hear my own voice. I can feel myself singing, but I can't really hear my voice coming back to me. That's when I have the most fun and the most freedom. But when I am trying to sing and I'm hitting these speed bumps all the time, and these wobbles, and these weird things happening, I'm still trying to figure out how to have fun doing that. I do notice the quieter I sing, the better it sounds. And also, if I'm super tired, like when I'm falling asleep at night, if I basically whisper sing with my head on the pillow, that also sounds pretty good.

Dr. Correa:
Wow. I mean, it's such an impact for you, because it's so tied to every aspect of life. I mean, we all could imagine how just the act of speech and the change of voice can significantly impact, and that's something experienced by people who have other speech disorders, have speech difficulties or changes after a stroke or other neurologic injuries. And you were starting to bring up, we've been talking a lot about your singing, but you've mentioned some about socialization and other aspects of your life. What other things have had to change or you have to vary in your day that ever since you've been managing with the conditions of spasmodic dysphonia?

Greta Morgan:
I do notice I feel way more comfortable around people I already know. I remember after one of the voice injections when I was in the kind of whisper, vocal loss phase, I went to this rooftop film premiere in New York and met a bunch of new people, and they all said things where they were making some assumption. A man said, "Oh, I lose my voice all the time. Have you tried chewing gum?"
And then this woman said, "Oh God, whatever happened, you sound sexy. You should keep it."
And people just sort of kept saying things like that. And it actually made me realize how many times I make an assumption about someone else's life or someone else's experience of their body. And I've tried to really catch myself in being curious and asking what's happening, as opposed to saying something like, "You should try gum."
So yeah, I had a really hard time sort of meeting and interacting with strangers, especially in places where I would have to be masked, because a lot of times people couldn't hear me through a mask. So I've spent a lot of time writing notes on my phone. I would say the big arc of my life over the course of five years went from being overly social, perhaps to my energetic detriment when I was living as a musician in Los Angeles, just so social all the time, to now being basically a mountain hermit who has a very small core group of friends, like a very small group of people who I meet with and see.

Dr. Correa:
So socially, it seems like your whole scope has changed. Your approach to interaction has changed a lot. And what it sounds to me, it sounds like I hear that you've developed an ability to, I think, empathize very differently with people's perspectives, and that everyone has a different view and interaction with the world around us.

Greta Morgan:
Oh, I have so much more compassion for people who struggle with any physical ailment that places them outside the kind of perfect center of norm of American health, because the system is just so not designed for anyone who has an extra need. For example, I remember during a kind of vocal loss period, I tried to go through and order an iced tea in, I think it was in a Starbucks drive-through, and they couldn't hear me. And I came closer to the microphone and they still couldn't hear me, and it came closer and they still couldn't hear me. And finally I was like, "Okay, I'll come in and write down on a piece of paper what it was." And I just thought like, "Wow, the day-to-day life doesn't really support abnormalities."
And I think as a culture, we're developing a much greater awareness and compassion for that. And certainly all the people I know who are running establishments are beginning to consider things like that in such beautiful ways. Bars starting to carry non-alcoholic drinks to support sober people and restaurants starting to create more comfortable spaces for people with physical handicaps. All the people I know who are running businesses are doing really beautiful things to support the whole spectrum of people who might walk in. And I find that very inspiring. But yeah, I have so much more compassion for the challenges people go through.

Dr. Correa:
In your book, you also share a lot about how you've had to explore your definition of voice and you're broadening your artistic horizons. I could see how this different perspective now that you have of the world and other people's experiences might change in your art and your interests. Can you explore for us how losing your singing voice ended up leading to new forms of creativity?

Greta Morgan:
Yeah. Well, one of the ways that I sort of took back my power amidst this diagnosis was to redefine what voice was to me. And I redefined my voice as any expression of my heart. So by that definition, my creativity became quite boundless. It was like if I braided my niece's hair and I did it with love, that would be my voice. If I picked up trash on trails, which I love to do when I'm hiking, that would be my voice. The way I listened to people would become my voice. Basically, anything that was a heart full expression would become my voice. And in that way, I began to think about life as more of the art project as opposed to this one small aspect of my life is my art project. I began to think about, "Well, how can my days be a song?" The original title of the book actually was Life is the Song. And that was because that was where I had eventually landed as my own perspective broadened

Dr. Correa:
Such a beautiful way to think of every day, the things that we do is our own way of songwriting. So when did you decide to write all of this together into a memoir?

Greta Morgan:
Yeah. Well, there's a meta moment in chapter eight where I was in Escalante, Utah spending a period of time alone there. And I was reading my mother's journals with her permission, and my mom has published a number of books. She used to be a producer for ABC in Chicago, but the voice that I read in her journals was this incredibly visceral, poetic, intimate, riveting voice that I had never quite seen that texture of in her other public writing. And I kind of had this realization that she had confined this incredibly potent storytelling ability to the private realm. And during that time, I had been doing a lot of journaling through my own experience of what was happening, and I kind of had this realization like, "Oh my God, I feel like I'm failing, because I can't make a record again, or I feel like I'm failing, because I can't sing, but oh my God, this is the thing that's asking to be made through me."
So once I kind of made that connection, I started writing all the stories of my life that could have affected my voice. I was trying to map them out almost like a detective. So I was looking at moments where I silenced myself or moments where I couldn't speak my truth, moments where I couldn't stand up to a bully, moments where I lied when I wanted to tell the truth. And as I began to journal through all of these, it just became really clear that I was writing a book a about my relationship with my voice. And once I sort of committed to the love story of writing on the page, so much work flowed through me. I think I wrote over 300,000 words, which a novel is usually 70,000 or 75,000. I just had this huge outpouring. It was almost like I put my whole life on the page. And then from there I sort of culled and focused it into what is an out in the story.

Dr. Correa:
So you also shared that you got into participating and teaching creativity workshops. Where did that come about and how was it helping other people explore their voice in different ways?

Greta Morgan:
One of the things I realized through the process of writing was that so much of my professional musical life had been shaped by giving my creative power to other people. In my own workshops, one of the things I lead with is follow your voice wherever it is taking you. And don't let someone else tell you how to sing or how to write, or how to play. A song is coming to you for a reason. It's asking to be sung by you for a reason. And another thing I tell everyone is that worthiness is a gift you give yourself. Being a real artist is a gift you decide to give yourself. You can't expect the external world to along and tell you, "Finally, you're an artist. You're an artist now." So I feel in a strange way, like the lessons I gained from losing my voice actually equipped me to help other people find theirs.

Dr. Correa:
Such an interesting and unique way to come to that perspective. At the same time, you were teaching, participating in creativity workshops, teaching songwriting workshops and creativity workshops, but a lot of that requires in part the spoken word for that interaction and feedback. So how did you approach and did you have concerns about that work and practice, and the expression that's required in that situation?

Greta Morgan:
Oh, yeah. So when I first started teaching workshops, my speech therapist and I scheduled out when my shots would be, how much recovery time I would have, and then all the warm-ups I would do before and after teaching. Warm-ups before, cool-downs after. So it was a big consideration and it's actually been amazing. So some of my students have been taking my workshops since 2020, and everyone who came to my workshop this winter, winter of 2025, they all were like, "Oh my God, your speaking voice sounds so different than even a year ago, and way different than 2020 or 2021."
So it's actually been really special that they have been part of the experience in that way. When I'm teaching and I have less voice, I will ask other people to read. So if we're reading song lyrics, I'll ask other people to chime in. There's all sorts of techniques to be able to ease the burden.

Dr. Correa:
I mean, in that regimen and approach of planning the interventions, the warm-up, the cool-down and everything. I'm hearing from that also my own experience with endurance sports and running. And for many of our listeners, they know we've interviewed several people in those athletic ranges of preparation and work. And this sounds like basically not only the rehabilitation course, but even the preparation for the activities that you find important.

Greta Morgan:
Oh, yeah, it felt like my own version of training for sports seasons. Completely, yeah.

Dr. Correa:
I wanted to sort of just then get to that future outlook. You're now five years after contracting COVID-19 in the middle of the pandemic, along with everyone else. That introduced even more and new uncertainty along with your diagnosis and symptoms. And you mentioned still navigating the impact on your health and your artistic work, and creativity. So does returning to performance and touring feel at this point or sound feasible, or impossible? And what dreams do you have for yourself artistically?

Greta Morgan:
Yeah, it feels impossible in this moment. In addition to my voice, I've had debilitating physical symptoms of long COVID, which I'm treating, and I've had so much improvement in the last two years, but I can barely attend a concert. So one of the things with long COVID is it's essentially a disease of the nervous system. So sometimes too much sensory stimulation could send the body into a shocked state, and for many people it manifests like chronic fatigue syndrome, which that's kind of the version of long COVID that I've had, chronic fatigue and brain fog. Again, I've managed to build a beautiful life that I love within these parameters, but from my current vantage point, touring seems 100% impossible. It's something that I, in my dreams, I'm playing shows all the time in my dreams. I'm singing all the time, and it's something that I do hold as a distant possibility that I would be so grateful for, but it feels like I still need a verging on miraculous level of improvement to be able to actually take steps to do that.

Dr. Correa:
Yeah, and I appreciate and thank you for exploring that with us, because I wanted to really get to that discussion, because at the same time, we're talking about and exploring all the many ways that you've really enjoyed and broaden your artistic horizon. But it's good to also hear that, where you are with that perspective. It makes me think back to our interview with musician Julia Easterlin and how she manages her intractable migraines, and the stimulation that performance and everything can lead to migraines, and how she has to manage or adapt how she performs and sings, and everything. And it seems like there's a really realistic consideration for you in any kind of performance.

Greta Morgan:
Yeah, I'm in mountain hermit. I'm on the mountain hermit side of the spectrum, and I will say it is a beautiful life. I just need a lot of rest and repair, but it is a beautiful life day to day.

Dr. Correa:
That's good to be there.

Greta Morgan:
Yeah.

Dr. Correa:
So where do you feel your current outlook is on healing and managing your condition, and your hopes personally?

Greta Morgan:
It's very easy to get caught in a dichotomy of sickness and health. It's very easy to start to feel like I'm playing a video game and the goal is to heal, and I can easily stay trapped in that spectrum of am I healing? Am I getting better? Am I having a dip? Am I healing? Am I getting better? My meditation teacher actually said something to me the other day that I found really helpful, where she said, "What if you stop calculating sickness and health, and just look at every single thing that's happening as part of the process of becoming the woman you're meant to become?"
That's how I think about healing right now as part of this process of, I don't want for this to sound too precious, but soul cultivation or calling home the kind of truest, biggest, most in love with the world version of myself, and learning how to be creative and learning how to surrender to what's happening. I'm trying to have the fullest and most beautiful experience of life possible, considering what the challenges are.

Dr. Correa:
Yeah, I mean, I don't think it's too precious. I think it's just struggle and the exploration that everyone tries to find. One of the things you bring up in your book is just this challenge sometimes when we hear other stories of people in a recovery or a healing status, that often gets very buttoned up and a little too neat, and with something we try to avoid, we come through and try to bring a perspective of hope for everyone in their lives and living with neurologic conditions or traits. Well, Greta, I truly appreciate you spending a precious amount of your time, energy, voice here with us, to share your story, to connect with our listeners. It's been a great experience. I have so many more questions and discussion, but I want to honor your time and energy, and I know our listeners want to hear from the medical expert with some more details about spasmodic dysphonia.

Greta Morgan:
Awesome. Great. Well, thank you so much.

Springtime Carnivore - Face in the Moon:
You don't like it easy. No, no, you don't like sure. I press my hands to the glass of the revolving door. All your pain, you're spinning like a weathervane, and you know I would be the end of your storm. Calling to the dark, is anybody out there? Is anybody out there? That's when I fall apart. I'm the one right here, I'm the one right here. Oh, I hope you see it soon. Are you gonna find that face in the moon?

Dr. Correa:
Welcome back to the Brain & Life podcast. Now, I'm just so honored that Greta took that precious time in her voice and energy to share with us her own story. And now I'm really happy to be joined by Dr. Brent Richardson. He's a board-certified ENT specialist, otolaryngologist. We'll get into a description of what that is, since it's a complex word that we haven't all heard that much. And he works at the Bastian Voice Institute, specializing and working in particularly some of these speech disorders like Greta has experienced, spasmodic dysphonia. And so, we wanted to have him as a specialist in this field stepping outside of neurology to speak about this experience, managing it, the condition, and help us understand more about Greta's own experience. Thank you so much, Brent, for joining us here today.

Dr. Richardson:
Oh, it's my pleasure. I'm so glad to have this opportunity to speak with you.

Dr. Correa:
So I threw out that word, otolaryngologist. Within the medical field, we refer to all of our own special colleagues and specialties, but for everybody else who hasn't had the opportunity to see an otolaryngologist, what's the scope of what you do and the situations that people come to ENT specialists?

Dr. Richardson:
Well, I'm actually a laryngologist, and so ENT is what the common designation is. So ear, nose and throat doctor. But I did a fellowship with my colleague Dr. Robert Bastian many years ago, and I have been practicing specifically laryngology, so voice, swallowing and airway problems, and a few strange things like people who can't belch, chronic cough and various other kinds of things. It's the T part of ENT.

Dr. Correa:
So even within neurology, and people think already right there, like the specialty of the brain, how particularly specific it is. Then there are lots of other subspecialties, whether the eyes and neuro-ophthalmology, and epileptologist and headache specialist within the EMT field. There are, I imagine many other subspecialties, your specific area being laryngology.

Dr. Richardson:
Yes, that's correct.

Dr. Correa:
Okay. And tell me about the Bastian Voice Institute and this particular focus on voice, swallowing and airway disorders.

Dr. Richardson:
Well, this is a practice that Dr. Bastian and I started in 2003. I went and did my fellowship with him at Loyola University Medical Center in Chicago, Maywood. And we were there on the faculty together then for another six years. And we came out to the western suburbs of Chicago, Downers Grove here to form the Bastian Voice Institute. So we are dedicated to voice swallowing and airway problems, and trying to treat patients in the best way we can. We have large education arm that is spearheaded by my colleague's educational website, which you can find. It's called laryngopedia.com, which is just a really huge storehouse of information about all kinds of voice swallowing and airway problems, lots of video examples and things like that. And you'll find examples of what we're going to be talking about today on there as well.

Dr. Correa:
Yeah. And so, Greta shared with us and shares in her book that she came to the Bastian Voice Institute for evaluation for the speech problem that she was having, diagnosed as spasmodic dysphonia. So can you tell us a little bit more about what exactly that means for both a singer, but anyone who's experiencing those challenges?

Dr. Richardson:
Of course. Spasmodic dysphonia is the voice manifestation of a condition that is called laryngeal dystonia. So dystonia means abnormal tension in a muscle, and oftentimes these tensions can be painful, but they're not something that can be volitionally controlled. And listeners may have heard of other kinds of dystonias, like writer's cramp or lefra spasm, where people can't keep their eyes open, or torticollis, where their neck wants to turn and various ways. And these are all different kinds of dystonias and dystonias tend to be task-specific. And in terms of the tasks in the voice, usually it's the speaking voice that's more affected than the singing voice, but sometimes both are affected and sometimes only the singing voice is affected. So the other aspect of laryngeal dystonia can be a breathing problem. So the larynx or the voice box is also the guardian of the airway. So when you breathe, you breathe between the vocal cords, which are V-shaped structures in the neck, inside the voice box.
And when you're breathing, they're apart. And when you make your voice, they come together. And in some situations that is not regulated properly either. And so, patients with breathing dystonia, which is even rarer than spasmodic dystonia, will have trouble with kind of a staggering inhalation or sometimes exhalation like that, all the time while they're awake. And yet while they're asleep, it goes away. So most of the patients with spasmodic dystonia don't have the breathing dystonia, that's far rarer. The problem in the voice, usually these spasms don't hurt, but they cause unpredictable, strange, strangled sounds in the more common form called the adductor or AD-ductor spasmodic dystonia. That is about 90% of all of the spasmodic dystonia cases. And so, the voice tends to catch or cut out, or squeeze down. So if I were to give an example for you, little catches in the voiced sounds, so it sounds like this long ago people found that it was easier to travel by water than on land.
Okay, so you hear this sort of catches or sometimes it's a squeezing like that, or just a little catch like that, or it can be just a tonic kind of a sound like this. It's always strained. And so, you can imagine that that would be kind of difficult to work with. The other thing that people find very frustrating is that they have no control over it. It seems to be exacerbated by stressors. So they'll say, "Oh, when I'm with my friends and family, I'm relaxed and I don't have any trouble at all. But when I talk on the phone, when I'm up in front of an audience, when I am trying to do something important or I'm feeling a little anxious, then my voice betrays me. I can't talk."
And that has led many to people to think, "Oh, it's got to be in my head. It's got to be psychological."
And yet it's not. It's exacerbated by stress, but that's not the cause. Many times emotive sounds like laughing, crying, having to yell if you become angry, the voice comes out surprisingly normal. Singing, humming, that sort of thing in many patients, completely unaffected. And so, that's why it's really quite mysterious to the people when they first develop it, and they often go many years even before it's diagnosed.

Dr. Correa:
Some of our listeners may remember in terms of task-specific dystonias, we've had an episode where we interviewed a community member living with runners dystonia. And there are, as you've mentioned, a variety. And particularly these task-specific dystonias seem to come out with a more repetitive task. So does that mean that in your experience, someone who is a public speaker or a teacher may have it more with their speaking voice rather than a singing voice, and whereas in Greta's own experience, it's much more her singing voice than her speaking voice?

Dr. Richardson:
Yes. Well, I would say it's a little hard to figure out whether the issue is that people who must or like to use their voice a lot are more affected by it, or whether it just bothers them more. So some people who are by nature very quiet, they hardly say anything to anyone. For them, this kind of a voice problem might not bother them very much. But in others, and especially when we're talking about trying to sing or perform, the issue becomes magnified. And the reason is that singing itself is a balance of a lot of different inputs.
So not only do you have to have the vocal cords positioned properly, you need to have the right tension in all the muscles that are controlling that tension. You have to figure out what's the airflow, you have to have in your mind how you want to approach it from the standpoint of singing. Singers can tell you there's a lot of singing that really is in your head. It's how you think about that sound. And sometimes it'll be absolutely fine, and other times it's not. And when you go out on stage and you don't know what to expect, it's really hard to deal with that situation.

Dr. Correa:
And in the example that you were able to vocalize for us, some people might hear that and think, "Well, isn't that basically a stuttering issue?" Or as we've discussed before in a different episode, a fluency output disorder?

Dr. Richardson:
No, it's not a stuttering problem, because stuttering is really a speech problem. We're talking about a voice problem. So it has nothing to do with articulation or being able to find the words, or make the words come out. It's making the sounds themselves come out, the carrier for the speech.

Dr. Correa:
And then in terms of kind of the million-dollar questions, what causes the spasmodic dysphonia? And I know that's not going to be a single cause.

Dr. Richardson:
Yes, you're right. It's a very valuable question that we wish we knew the answer to. Well, you can imagine if you have a rare disorder, then what you have is a lot of anecdotal evidence. And so, also if you have a rare disorder, it's also very easy to associate that rare disorder with things that commonly, so the question is what causes it? Well, there are people who have this disorder that happens very gradually. In fact, most people would say that it kind of enters their life gradually and then it worsens. There are others who have it as a rather sudden abrupt situation. And in those cases, we might be able to say, "Well, perhaps there is, maybe that's the cause here."
And so, viral infections we know can affect other nerves. We know what causes vocal cord paralysis in some patients. We all know that COVID caused a lot of neurological problems, peripheral and central, certainly that's a good possibility. Patients who have had head injuries will have this kind of a thing. I've had a few patients who had a surgery, not even a very dramatic surgery, seemingly not involving anything that we would think would affect the voice that have been affected.
We know that for a certain dystonia there is a genetic predisposition, and yet most patients don't have genes that do that that we know of so far. So is it a polygenic thing? Is it something that requires a series of kinds of situations that happen? Many patients have said that it is something that really surfaced after they went through a period of heavy emotional or even physical stress. So that certainly could be a possibility, or it might simply be the manifestation that these voice problems are exacerbated by stress. Maybe it was there all the time, and yet that became very, very evident to them when they got in that situation.

Dr. Correa:
So unfortunately, it's not that there's a clear set or symptomatic cause in most cases. In actuality, there are many possible causes and/or maybe a series of things that occur in sequence.

Dr. Richardson:
Yes, yes. And it would be so much easier if we knew what caused it, we'd have a better idea of how to treat it.

Dr. Correa:
Yes. And there are certain situations that are abrupt or acute injuries, like strokes or if there's a lesion, or like you said with a traumatic brain injury, or if someone has a mass. Are there associations with some of those types, aside from traumatic brain injury that you mentioned, with some of those types of processes and spasmodic dysphonia?

Dr. Richardson:
It definitely can happen in terms of stroke and that sort of thing. The thought is that the problem occurs at the level of the basal ganglia, coordination of the control of the tension in the muscles in the larynx, the tiny muscles that make up the vocal cords and the ones that move them. And of course, there are a lot of sensory inputs that derive from the vocal cords, and go back and forth as well. There are other conditions. There are patients who have Parkinson's disease or Parkinsonian kinds of problems that sometimes will develop these kinds of voice problems, spasmodic dysphonia or something similar to it.

Dr. Correa:
Yeah, I think I've seen speech output impairments occur with injuries to the basal ganglia, but not as specific to a spasmodic. So I was just interested from your side if you've seen more of that, maybe in the rehabilitation from the more severe output problem that we've seen some individuals experience. Maybe once those things improve, if you had seen that. But unfortunately, it sounds like it's not necessarily one in a situation where we see very clear individual causes. And so, then there's the question of just how to manage it and how to help an individual both speak and live better with their current dysfunction and impairment.

Dr. Richardson:
Yes, and so there are various things that have been tried and are being tried. The one that we would mostly consider the gold standard at this point is intermittent injections of Botox into the muscles that are affected. And in the case of the most common form of spasmodic dysphonia, which is the adductor reform, this sort of strange strangled form, those are the muscles that make up the vocal cords and that bring the vocal cords together. That is something that we routinely do. It's very straightforward to do in the office. It may seem a little barbaric, but most patients actually get through it very, very well, and they keep coming back, because the treatment helps them. And that involves putting a little numbing injection right in front of the voice box in between the cartilages that make up the voice box, and then into the windpipe, which numbs up the inside. And then, we use an EMG guided needle to go into the airway and then direct it into those muscles on each side.
So the whole process takes just a couple of moments. It feels a little bit uncomfortable. Most patients say it's not terrible, and then that's it. The Botox unfortunately has the side effect of making the voice weak and breathy for a time. And that's part of the thing that makes it difficult if you are a person who needs to use your voice a lot, is how do you deal with the expected side effects of the Botox? So in the case of singers, they sometimes have to modify their repertoire depending on where they are in their injection cycle. Sometimes they're just not able to sing what they need to do. Sometimes they decide it's just not something that can be done.
But the side effect is that the voice becomes kind of a Minnie Mouse or a Mickey Mouse kind of voice for a while. So it sounds a little bit like this, and it's rather weak. Some patients will have a little trouble swallowing liquids, not many, for a brief period of time, and then the good voice comes. So the voice gets released. So the strain spangles sort of sounds relaxed, and then the voice becomes, well, in many cases, almost what their usual voice was. And then as the Botox begins to wear off after three or four months, then they start to have little spasms again and they end the schedule for another injection. So that is one way of treatment.

Dr. Correa:
Now, Greta shared that in addition to Botox injections, she's done speech and rehabilitative therapy, and exercises, and that is a key component often in various other types of dystonia management and rehabilitation. What have you seen the relative responses and the variety of possibilities for those exercises for many people living with spasmodic dysphonia?

Dr. Richardson:
Well, they can work very well, especially for some patients who have a very mild case of spasmodic dysphonia and they're not very bothered by it. Then they can learn these other augmentive ways of producing their voice. So strategies for breathing, strategies for word choice and things like that. In terms of, I mean, it certainly can be very, very helpful as an adjunctive treatment. Some people have tried to treat spasmodic dysphonia with voice therapy only, and the success of that is really dependent on how bothered the patient is by their symptoms. One of the most difficult problems that people experience with this disorder is that they always have to think about how they're going to say something, and that feels very constraining to them. And voice therapy doesn't really change that if they have to always think about how I'm doing this. They learn the strategies, but it's not as freeing as it might be. And so, that's why Botox is much more helpful in that regard.

Dr. Correa:
Yeah, I could see for her as a singer who's already spent so much time both in active training and thought process about it, that maybe it doesn't necessarily bother as much, and she's actually open to the amount of time and attention, and work that it takes for it, where that might be really an interruption for a lot of other people's lives. Now, the botulinum toxin or the Botox, as you mentioned, is the mainstay of therapies, and I've heard from individuals and patients that it either decreases how well it works over time, or is it that the spasmodic dysphonia is progressing? Is it typically considered to be a condition that progresses and worsens with time, or the treatments and management actually wears off? Where's the balance between that and what we understand?

Dr. Richardson:
Yeah, I would have to say that's not really been my experience. So spasmodic dysphonia, it does tend to worsen over time. There are some patients that I have seen, who several years ago said, "I'm not really interested in treatment." And then they'll come back a few years later and say, "It seems like it's getting worse now." And so, the progression of that does seem to be gradual, and it's very individual. But in general, in patients who have been treated with Botox injections for a longer period of time, they'll often say, "When my shot wears off, it's not as bad in between." So their symptoms actually are better.

Dr. Correa:
And so, the Bastian Voice Institute is one place where individuals might seek input and management, but as we said, ENT as a broader specialty has many subspecialty areas. And so, someone who's having spasmodic dysphonia are looking to get treatment and management might have a tough time really finding the right place and the right people to see, who have experience at targeting these small muscles and diagnosis, and treating it. So what's some of the easiest ways that individuals with someone in their family or they themselves are living with a speech pattern like this can seek care from a laryngologist?

Dr. Richardson:
Well, I would say one of the things to do would be to go to the website called dysphonia.org, D-Y-S-P-H-O-I-N-A, and that is now the name of what used to be called the National Spasmodic Dysphonia Association. And you'll find there a way to find doctors that are in your area that have experienced treating this. It is really a small number of patients. It's estimated that maybe there are 50,000 patients in the US with this problem. Probably there are quite a few more that don't know that they have this disease, but that would be the best place to find people that understand this problem. Other than that, if you are at a place where there's a tertiary care center, so like a university or even a private clinic, where they have someone who is trained as a laryngologist, they would be the best person to see about this particular problem.

Dr. Correa:
Well, Brent, thank you so much for taking the time and for everything that you're doing to help everyone have a better voice, and be able to share their stories.

Dr. Richardson:
It's my pleasure. So thank you so much.

Greta Morgan - Vanishing Path:
When I open my-

Dr. Correa:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katie 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:
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Greta Morgan - Vanishing Path:
... No way to turn back. Ave Maria, send me a dream. I know who I was, but not who I will be. For so long I've known who I wanted to be. She is brilliant, beloved, much better than me. There's no way to find her, I know she is gone. So I dance among the endings as I write a new song. The life I knew is a vanishing path. Nowhere to move forward, no way to turn back. Ave Maria, send me a new dream. I know who I was but not who I will be.

Self-Discovery and The Lost Voice with Songwriter Greta Morgan

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