Portland State clinic embraces telemedicine to help Oregonians who stutter

The pandemic accelerated the rollout and adoption of technologies like Zoom as a way for clinicians to conduct virtual visits with patients. But well before telemedicine took off, one Portland clinic and research lab has been conducting its visits exclusively virtually since 2017 as a way to reach more patients throughout Oregon with services that could be hard to come by, especially in rural areas.

The Stuttering Lab at Portland State University provides speech therapy conducted over Zoom to people who stutter. The sessions are free and open to any Oregon resident. Clients work with a speech-language pathologist and her team of graduate students to learn techniques to better manage and accept their stuttering, a speech disorder which affects about three percent of the population. The lab also conducts research on how people who stutter talk about their condition, and the effectiveness of telepractice sessions compared to traditional, in-person sessions.

Joining us to share some of those findings are Megan McGill, an assistant professor in the department of speech and hearing sciences at Portland State University and the director of the PSU Stuttering Lab. Leo Ergenekan, a 10-year-old former patient of the lab, and his mother, Haylee Ergenekan also join us to share their experiences.

The following transcript was created by a computer and edited by a volunteer:

Geoff Norcross: This is Think Out Loud on OPB. I’m Geoff Norcross. Telemedicine has exploded across the country ever since the pandemic. More people than ever have visited their doctors online. A clinic at Portland State University was ahead of that curve. The PSU Stuttering Lab has been providing online therapy for people who stutter since 2017. It’s free, it’s open to any Oregon resident. Here to talk more about how the lab works is Director Megan McGill who is also an assistant professor at PSU’s department of speech and hearing sciences. Megan, welcome.

Megan McGill: Hi.

Norcross: We also have a former client with us. Leo Ergenekan is 10 years old, and his mother Haylee Ergenekan is with us as well. Leo, Haylee, it’s great to have you too.

Haylee Ergenekan: Thank you so much.

Leo Ergenekan: Hi.

Norcross: Megan, you’re first. Why did you decide to focus on helping people online instead of in person?

McGill: So in 2017, when we started doing telemedicine, I was really interested in being able to provide access to care for folks who live in rural areas or don’t live in an urban center area in Oregon. There are not as many speech language pathologists who live in rural areas, and so one SLP may cover a very large geographic area. My clinic and my research really is, how can we bridge some of those disparities between access to care in rural and urban areas, and particularly related to stuttering, which is a specialty area within our scope of practice? So equitable access to care was really paramount for me. And then being able to connect clients with family members or pediatricians or teachers, bringing everybody into this virtual space together.

Norcross: My basic understanding of an online session with a clinician or therapy is it’s okay, but it can’t match an in person session for effectiveness. Is that not true for stutter therapy?

McGill: That is not true. Part of our research in my lab at Portland State University has been looking at, can we accurately diagnose stuttering online compared to in person evaluations? And we have found that yes, we can. In addition, we’re looking at the client’s experience of going through therapy with us on telepractice. And our clinical research data has shown us that our clients can meet their communication goals online, that they feel comfortable attending these sessions, and that we can develop that client/clinician rapport and relationship in an online way. So it’s really exciting to see the evidence. We know it. I’m looking at Leo right now and thinking about all of the fun connections that we’ve made online. That is something that our clients report to us and now we have the data to back it up.

Norcross: What are some misconceptions that people have about stuttering?

McGill: A lot of folks think that stuttering is caused by nervousness or anxiety, and that’s not true. Many of us who are fluent speakers, myself included, I’m not a person who stutters, I have disfluencies in my speech. I might use “um”, “uh”, “yeah”, “like”, or I might revise what I’m saying. And those are typical disfluencies. Everybody has those.

Norcross: Me too.

McGill: But stuttering is different. Stuttering is characterized by particular types of disfluencies where a person might repeat a sound or a word with tension, or might have a prolongation of sound where the sound is being stretched out, or a block where there’s no sound coming out at all, but you can kind of see in that person’s face that they’re in the position to produce that sound. And so when someone who stutters shares with you, “hey I stutter,” it’s important for us, if you’re a fluent speaker and don’t stutter, to respond with “thanks for sharing that with me” and not with something like “oh don’t worry about it, I do too.” Because if you’re not a person who stutters, then it’s really important that you’re not saying that you do understand that experience, because it is different for a fluent speaker.

Norcross: Can stuttering be, and I’m using air quotes here, “cured?”

McGill: There is no cure for stuttering in that we can make it go away. When we work with our adolescents and our adult clients, we’re really looking at how can we best support them in being effective communicators, how can we give them some ease in their speech production, and how can we empower them related to their speech and to their stuttering without focusing on “how do we change the way that you talk so that you talk like somebody who’s a fluent speaker?” So there is no cure, we’re not going to make stuttering go away with our treatment. But there are things that we do to support communication effectiveness.

Norcross: Leo, for someone who doesn’t know what stuttering is, how would you describe it to them?

L. Ergenekan: I think I would describe it as just a way of speaking. Sometimes, you can be sort of bumpy. For example, for the word microphone, smooth is like “microphone.” But bumpy is kind of “m-m-i-c-c-c-c-rophone.” And sometimes, what I do a lot, I stretch out the words, and I make it long. And the words I usually stretch out a lot are “S an “L”. And sometimes, it’s kind of rare, but I repeat the words two times when I’m sort of nervous and I have a lot of anxiety and stuff, that’s usually when it happens.

Norcross: Are you feeling that now?

L. Ergenekan: Not really.

Norcross: I’m glad to hear that. What kind of situations do you find yourself in where it happens?

L. Ergenekan: Sometimes when I talk to people a lot, that happens so much. But not really a lot when I’m doing this right now, for a recording or something like that. But it usually happens a lot when I’m talking to people.

Norcross: What are some of the things that you learned in your sessions at the lab that help you with all that?

L. Ergenekan: I learned about the diaphragm, how it works like a trampoline, it just bounces to your lungs. And I think I learned about your voice box, how it works if you stutter. I learned about a lot of the body and how the stuttering works, and stuff about bumpy speech and smooth speech, like I basically described just now.

Norcross: When it’s happening, what do people do, and how do they react in ways that are not helpful?

L. Ergenekan: Sometimes, people sort of talk over me and stuff. That happens a lot when I’m trying to explain. And then after a while, some people started to understand what’s happening, and then they started to wait for me to talk.

Norcross: Leo, your mom Haylee is with us here too. Haylee, stuttering tends to run in families, and I understand that you had one when you were growing up. Can you describe how that affected you?

H. Ergenekan: It did, it did quite a bit. I had a little mix of everything. I believe that I not only stammered, but I also blocked, which means I had a look on my face like I was trying to speak but I couldn’t quite get the words out. I feel like I was trying to figure out how to make the pronunciation of what I was going to say appear not as if I was struggling. And I did a lot of what Leo, I elongated a lot of my words, I would draw out probably the first letter of every word. It was very unusual, it was almost like I was trying to build up momentum for starting to speak.

It lasted quite a long time. I was in speech therapy as a child. Back in the 80s we didn’t have telemedicine, so I did the old fashioned in-person sessions, and they helped quite a bit. I learned a lot of techniques. Back then I learned to tap at my thigh, so I would use my thumb to tap out the words as I spoke, which I find myself doing as an adult today. Like Megan said, I don’t really believe there’s ever a cure, you don’t ever find yourself cured from speaking. But I did notice, with a lot of practice and a lot of self reflection, I did grow up almost feeling like I had grown out of it to a point. But if I get excited or I get nervous or anything, it comes back. But I’ve learned to accept it.

Norcross: And how would you compare the therapy you got as a kid to what Leo is getting at PSU?

H. Ergenekan: It’s light years different. I love the clinic, for the fact that they really get to know Leo. I think there is such a beautiful new way nowadays of really fine tuning who the child is, and what their interests are. What I loved about the PSU Clinic was that they really took the time to find out who Leo was first, what his interests were, what he enjoyed doing. Leo’s a huge 80s fan, the ‘Back to the Future’ trilogy are some of his favorite movies. And so they would decorate all of the PowerPoint slides with ‘Back to the Future’ themes and 80s icons and music, and they knew he was going to Disneyland so all the slides were Disney related. They just really took the time to get to know who Leo was, and I think that set such a great foundation for him feeling safe and comfortable to learn about something that he was having such a hard time with.

Norcross: Megan, did changes like those come about because of any kind of research, or are we just sort of coming around to the idea that we got to know the patient a little better?

McGill: I think that there is something to that, that it is really important for us to get to know what Leo likes to talk about, what he doesn’t like to talk about, who does he like to talk to? And then we can shape our lesson plans and our clinical treatment plans to really match what that person is doing in their everyday life. We all have different types of speaking demands and communication demands, and so if you’re giving a presentation in class, maybe that’s something that we’re gonna target in our therapy session. If you’re going to Disneyworld and you need to be able to talk about all the different things that you’re gonna see there, that’s something that we’ll target too.

Norcross: Megan, Why free? Why is that important?

McGill: It’s really important. We know that there are barriers to access to care in terms of, can someone pay out of pocket for services? Does the insurance cover speech therapy services?  Do they cover speech therapy services for stuttering, which is a whole other thing that we’re working with in terms of insurance companies. And so being able to provide free services makes it an equitable approach. We don’t care if you can pay out of pocket or not, we just want to be able to work with you. And so my research lab and my clinical research has been funded by grants provided by the Oregon Scottish Rite. They have funded my research since 2017 continuously so that we can provide these free services.

In addition, the clinic is a training program, we’re at PSU. And so I have graduate students who are studying to be speech language pathologists who work with me and with clients like Leo. So they’re learning how to do telepractice, they’re learning how to work with folks who stutter, and it’s all part of this free clinical research program.

Norcross: Leo, you wrote a letter to the National Stuttering Foundation, it has a little place on its website and its quarterly magazine that has letters and artwork that’s submitted by kids like you. What did you write?

L. Ergenekan: I just wrote about who I am, and what sort of stutter I have. I talked about what games I liked, what I like doing, what are some of my hobbies, and about my family. And also I said at the end of my letter, “don’t let stuttering take over what you want to say.”

Norcross: That’s amazing. That is amazing. Why did you want to write that letter?

L. Ergenekan: I guess to help a lot of people who stutter a lot. I want to help them.

Norcross: Yeah. Haylee, as a stutterer yourself, how do you find your understanding of Leo’s condition changing as he grows older and he manages it?

H. Ergenekan: I’m really proud of the attitude that he has about it. I grew up extremely insecure about it. I don’t know if it was just being a girl or or going through the changes I was going through, but I was incredibly insecure of how I spoke. And watching Leo have such an incredibly positive attitude about it- I asked him, I said “how do you think people will treat you?” And he’s like “they’re going to understand.” He immediately has this impression of society and people that they’re just they’re they’re going to understand and it’s going to be okay. He doesn’t shy away from any opportunity to speak, he doesn’t let it get in his way, and I really am highly influenced and very proud of how well he approaches situations. He doesn’t shy away. He wants to be understood. And I think that’s so important. He has a voice.

Norcross: Well the last word is for you, Leo, for any kids who are listening right now who stutter, and grown ups for that matter because you can help them too, what do you want them to know about stuttering and how you can live with it?

L. Ergenekan: I would first tell them stuttering is just a way of speech, and soon enough you grow out of it, and get some stuff to make it start to go away. A lot when I stutter, I kind of freeze, to just take a deep breath. And then after that I kind of start to be refreshed.

Norcross: Well, you’re a brave young man, and I really appreciate you talking to us about the work that you’ve done through the lab and, thank you so much for being here.

L. Ergenekan: You’re welcome.

Norcross: Leo Ergenekan is a former client of the PSU Stuttering Lab. His mom, Haylee Ergenekan has been with us as well. Megan McGill is the Lab’s director. Thank you to you as well.

H. Ergenekan: Thank you.

McGill: Thank you so much for having us.

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