Voices Heard: Increasing Awareness of Spasmodic Dysphonia and Related Disorders

Podcast Transcript

Paul Bryson: Welcome to Head and Neck Innovations, a Cleveland Clinic podcast for medical professionals exploring the latest innovations, discoveries, and surgical advances in otolaryngology - head and neck surgery.

Thanks for joining us for another episode of Head and Neck Innovations. I'm your host, Paul Bryson, Director of the Cleveland Clinic Voice Center. You can follow me on X, formerly Twitter, @PaulCBryson, and you can get the latest updates from Cleveland Clinic Otolaryngology-Head and Neck Surgery by following @CleClinicHNI on X. That's @CleClinicHNI. You can also find us on LinkedIn at Cleveland Clinic Otolaryngology - Head and Neck Surgery, and Instagram at Cleveland Clinic Otolaryngology.

Today I'm excited to be joined by Eileen Meehan. Eileen is a member of Dysphonia International, a patient-led organization that provides information, education, support, and research funding to those in the Dysphonia community. Eileen, welcome to Head and Neck Innovations.

Eileen Meehan: Thanks for having me.

Paul Bryson: Well, let's start by having you share some background on yourself for our listeners, where you're from, how you got involved with Dysphonia International.

Eileen Meehan: Well, I'm a native Clevelander. My background is as a lifelong educator, primarily in early intervention, so that's birth through eight. But also I spent a certain amount of time doing professional development, and until my diagnosis, teaching English to speakers of other languages. When my voice symptoms began in 2021, I had an idea of what was going on as I had a colleague who had spasms. So the day I was diagnosed, my Cleveland Clinic doctor told me to go home and look up Dysphonia International, and I did, and I have been involved ever since.

Paul Bryson: Yeah, I mean, it's a great organization, just as a physician seeing their presence at meetings, talking with people at various meetings and just the wonderful online resources, and we'll get into it, but for a voice condition that a lot of people don't understand or have awareness of. It's like a very natural home that is sort of welcoming and educational for this. And so can you share more about Dysphonia International, about the organization, the goals for the organization and what people might expect if they go to the website?

Eileen Meehan: Great. Dysphonia International, formerly known as the National Spasmodic Dysphonia Association, is a patient led organization dedicated to improving the lives of people affected by spasmodic, dysphonia and related voice disorders through research and education, awareness, building and support. When you go to the website for the organization, dysphonia.org, you'll find information on exciting current research being supported by Dysphonia International. You'll find information for newly diagnosed people with frequently asked questions and answers to things like, is this my fault? What did I do? There are links to support groups, many of which have an online option allowing people to join in from around the globe. In the past 18 months or so, the expansion into countries around the world has been amazing. Pakistan, Japan, New Zealand, Australia, great Britain, Japan.

We also have a network of area contact leaders that will respond to a request that a patient could make through the website for individual support as a patient navigates their diagnosis so a patient can request a contact. And someone like me from a not completely non-medical standpoint, mostly a social adjustment standpoint, will reach out. It might be a cup of coffee, it might be an email correspondence, but because we have sort of a unicorn condition, sometimes it's hard to find others who have walked the same path.

Paul Bryson: Yeah, I appreciate you sharing that. Do you want to talk a little bit about spasmodic dysphonia and vocal tremor related conditions? I know you eloquently described the organization and what people might experience by going there, but maybe some of our listeners may be medical, some may not be. So for those listeners, we're talking about a specific type of dystonia and movement disorders that affect the larynx and adductor and abductor. Spasmodic dysphonia are laryngeal dystonia, which, and you correct me if I'm not accurate, but they're sort of when the muscles in the larynx sort of over function or act inappropriately during certain speaking tasks. And is that kind of your understanding as well?

Eileen Meehan: Absolutely. These are neurological conditions. This is not overuse of the voice. This is not illness or infection. This is something…

Paul Bryson: This is not in people's heads. This isn't some sort of psychogenic condition at all. This is, like you said, a very specific neurologic condition, kind of like people can get dystonias and other parts of their body - writer’s cramp, torticollis, all sorts of things.

Eileen Meehan: So we've got the adductor, the ad adductor, spasmodic dysphonia, and the ab abductor, spasmodic dysphonia vocal tremor. We also have people who have vocal cord paralysis, paresis as part of our organization, and most recently on our website is a respiratory dystonia, which I have to tell you, doctor, is brand new to me. I'm someone who has multiple labels, and we come from all walks of life, of course. But interestingly, there's lots and lots of professional voice users, which is, wow, I ended up here at the Cleveland Clinic. The professional voice users tend to be out there and active, and because there's literally nothing else wrong with us, we have the ability as patients to kind of be out there spreading the word. And I don't want to use anything like activism language because we're very well treated except for those people who live in parts of the country where access is poor, which is a real problem, not a problem in Cleveland, Ohio, but a problem in many places in this country.

So it's obviously, as you know, doctor, it's something that can affect people many times of their life, but it's more older people and it can affect men and women, but it is more women, like many things, though I certainly know people who started at 13, and I know people who started at 17. So until I was diagnosed, besides using my voice for eight hours a day as a teacher, my main hobby was choral singing. And there was some hope that I might be able to regain some of that. But the essential tremor makes pitch management much too difficult. And your job as a choral singer is to work as a team. So I have to enjoy music from the other side of the stage at this point.

Paul Bryson: The tremor can mingle with this. It can be a larger profile of it. There's a lot of nuance to it, and I think you're right. I still feel like there's probably more people that suffer or are undiagnosed with it than we appreciate. And the access to care is a major thing. I think mostly because sometimes people aren't maybe aware of what they're listening for and they're just not, they don't know who to check with, or maybe they're not comfortable with treatment or things like that. It's hard to know all the barriers.

Eileen Meehan: And I question, I think some people would say, oh, it must be an age thing. Or some people would say, ah, it's the smoking I did, or some people, all those other things. I was speaking with a professor at Cleveland State who knows a lot about healthcare in the Caribbean, and I said, why am I not meeting people who are maybe economically disadvantaged? Where are they? And she said, they're out there seeking treatment for things that are going to make them more sick. They don't have time for this. And that's a shame because the treatment options can be so successful. And also just in the trying, it's empowering as a patient, the trying even sometimes it's, I'm not telling you anything you don't know, but this is a process. And I have to say that working with the team that I work with, so that's Dr. William Tierney, Michelle Adessa, (Bethany) Beckham - shout out.

Paul Bryson: I love it. My partners,

Eileen Meehan: There you go.

Paul Bryson: Great, great, great partners.

Eileen Meehan: You know what? We end up having that talk. What were your symptoms like afterwards? How long did you have breathiness? How long did you have swallowing issues? How soon was your voice better? How long did it last? And then we have that discussion and we make a decision together, that is empowering stuff.

Paul Bryson: Every time. Every time. And I think it's, yeah, because it's not one size fits all. And so for the listener, when we talk about treatment, we're probably the most common treatment for people with these voice issues is laryngeal Botox injections. And so what might seem like a scary thing, it's not too scary. I think maybe the first injection is a little weird. This is happening to me, but we really try to make it comfortable and empowering. We talk about it each time. We try to find the right dose and injection pathway that it works for people. So it's good to hear. I'm glad to hear of that process.

Eileen Meehan: Absolutely. Absolutely.

Paul Bryson: Yeah. And I wanted to talk a little bit, we were going to talk about sort of best practices and things like that. And I would say a lot of the times when we talk about laryngeal dystonia and we talk about vocal tremor, we are usually talking about Botox. Sometimes for patients that have tremor, we will talk about neurology visits if they have head or extremity tremors. We try to approach people, and it's not all the same. And so we try to see what people's needs are. We talk about Botox probably for the majority of people on the website. There are some centers in the U.S. that will talk about surgical interventions for this, but sort of the workhorse has really been laryngeal Botox injections for many decades now.

Eileen Meehan: Well, and I think that it's reversible. That's the thing about it. Now, it's interesting. Dysphonia International provides seed grants to researchers, and it's very exciting. So it allows researchers to gather data to then write grants to go to the big funders. We're not a big funder, but it means there's data to put in that NIH grant. So the interesting things that are currently out there are involved in treatments, in measurement tools, and that's interesting work. How long, much, how many? And then causation and brain activity. So there's some crazy stuff going on. I mean, crazy to me. Deep brain stimulation, transcranial magnetic brain stimulation, transcranial direct current stimulation…

Paul Bryson: MRI guided ultrasound ablation for essential tremor…

Eileen Meehan: The use of DAXXIFY® in laryngeal dystonia. And then I participated in a beta study of the use of a fibro tactile stimulation device.

Paul Bryson: What was your experience with it?

Eileen Meehan: It was great. It was great. It doesn't last, so it lasts about 40 minutes. Okay. My family could time that, and I think when they get it small and convenient so that you could wear it and go to a social event, wear it and go make a sales call, wear it present in a class, I think that that's really exciting. The thing about the membership is that we will do anything. We will, in terms of clinical trials, we'll do anything. There was a suite SLP grad student working on a thesis project, and she put a questionnaire on the dystonia website, and she got 10 times the number of respondents that were expected. So really to put that out there to people who might be on the research side, is that this is a group of people who are anxious to help you.

Paul Bryson: Yeah, they're very engaged. Very engaged.

Eileen Meehan: This even goes down to the brain donation program at Harvard. So we're excited about what's out there. We are happy that Botox is there as the standard of care, but it's exciting to know these other things are out there too.

Paul Bryson: Oh, absolutely. Even on this DAXXIFY® thing. So for the listener, there's potentially a Botox formulation that might last longer that we'll see when it comes to market. I've heard that it's approved for other dystonia systems. But something that is effective and maybe decreases your treatment needs is very nice for patients.

Eileen Meehan: That's a win for everyone. Yeah. Another cool thing that Dysphonia International is involved with is providing seed grants to explore how AI can assist those of us with voice disorders in very super practical ways. So at our international symposium last month in Tampa, we butted up against an AI voice symposium, and it was neat. We were able to invite people to stay over, and they did. And so they got to talk with us and don't get a bunch of people in their heads about who they could be servicing. And that stuff's interesting in, since my background is in special ed and assistive and augmentative communications been part of my life forever, these things make so much sense to me. So it includes something I have on my phone right now where I can make phone calls, and it adjusts my voice, and my voice is smooth and understandable. When I trialed it, it made family members cry.

Paul Bryson: Oh my.

Eileen Meehan: Yeah. Yeah. That's cool stuff.

Paul Bryson: It's very cool.

Eileen Meehan: Yeah, so it's kind of coming from a couple different directions, but there's neat things out there. And really anyone who's interested, student, physician, patient, just spend 20 minutes poking around on the website. Just look at, there's stories there. There's links to literature. There's links to studies. It's so neat. And lastly, on that score, you can see on there the report annual meeting where they bring together all the researchers that they've given seed grants to, they bring them together. And a lot of those people are very busy, and they don't really have time to maybe read a lot of each other's research, especially if it's slightly out of their field. And that has been very fertile ground for ideas.

Paul Bryson: No, that's what it's all about for everybody. Yeah. Yeah. Well, that's great. And when we're done with the podcast, I have to get some information about this app so I can share it with other patients.

Eileen Meehan: It's right here on my phone. It's fantastic.

Paul Bryson: Well, I was going to say, if there were any additional take home messages for our listeners, we have medical professionals that listen, we may, when this comes out, we'll try to promote it to the community, and hopefully the organization will put it out there too. It'd be great to have some patients listen. They will, I guess I'll let you give the final take home message.

But I guess my take home messages are if your voice has changed and you're not sure of it, you should come in and get seen. See if we can see anything, hear anything. If you still feel like you're maybe not being heard or understood, look for maybe that voice professional in your community who might approach things with a different ear or some different experience. And I would say if diagnosed with one of these conditions, I would say you're not alone. And that there's an organization like Dysphonia International with so many resources and ways to maybe empower you to understand a little bit more about what your options are and what's coming up on the horizon, and that you're not alone in this. And so that would be my take home.

Eileen Meehan: One thing I've heard repeatedly in discussions with folks, especially at these symposiums, that's where I might meet and talk with 50 people who sound like me in a weekend, is they're so grateful for collaboration with their physicians and their SLPs. It's not maybe universal, but in the main great scheme of things, the vast majority of people have that same experience that I've had, and they are so grateful to have a situation that seems like loss of control, loss of autonomy, sense of self. I mean, there's some serious kimchi, as we say, but to be part of it means a regaining of that control and confidence in approaching the world. And I think that that's super important. I mean, literally, you walk around the room and that's what you're hearing people talk about. And then very lastly, Dr. Bryson, you're going to have to indulge me while I thank my otolaryngologist Dr. William Tierney once again, and his team for his skill and patience in treating me, and for his referral to me on day one to go check out Dysphonia International, which I did. And I needed to practice radical acceptance of my new normal. And Dysphonia International and their services, and then my subsequent volunteer activity with the organization has been a part of my radical acceptance of a life-changing event.

Paul Bryson: Yeah. Well, I mean, I really commend you, not just for all of the things that you give back to the community, but just for your approach. And we're very proud of Dr. Tierney. I'm glad that you're here at the Cleveland Clinic and we can provide care for you. And you're in great hands. Yes. Alright, well, thank you so much for your time today.

Eileen Meehan: It's been my pleasure. Thank you.

Paul Bryson: To view resources and learn more about Dysphonia International, visit dysphonia.org. that's dysphonia.org.

And to learn more about dysphonia treatment at Cleveland Clinic, visit ClevelandClinic.org/Dysphonia. Finally, to connect directly with a specialist or to submit a referral call 216.444.8500, that’s 216.444.8500. Eileen, thanks for joining Head and Neck Innovations.

Eileen Meehan: It's been my pleasure.

Paul Bryson: Thanks for listening to Head and Neck Innovations. You can find additional podcast episodes on our website clevelandclinic.org/podcasts. Or you can subscribe to the podcast on iTunes, Google Play, Spotify, BuzzSprout, or wherever you listen to podcasts. Don't forget, you can access realtime updates from Cleveland Clinic experts in otolaryngology – head and neck surgery on our Consult QD website at consultqd.clevelandclinic.org/headandneck. Thank you for listening and join us again next time.