Words That Bind
A new weekly aphasia communication group is helping Illinois speech-language pathologists understand the condition.
By ETHAN SIMMONS
In the days following her stroke, all Mary Moore could remember was two phrases: her name, and Dec. 26, the day she was born.
A short five months later, Moore was in the Audiology and Speech-Language Pathology Clinic, leading a lively conversation with students at the University of Illinois Urbana-Champaign. She’s now a regular attendee of the Aphasia Weekly Communication Group, a brand new initiative in the Department of Speech and Hearing Science at Illinois.
“It’s very accommodating to people, and it’s just so, so much fun,” Moore said. “It helps your ability to socialize and get out there when you go back home afterwards.”
Now that Moore is living with aphasia, a language disorder that limits the comprehension and production of speech, she knows her conversational skills may never return to her pre-stroke fluency. But the camaraderie she experiences each week with the group provides a regular boost to her confidence.
The aphasia communication group brings master’s degree students studying to become speech-language pathologists together with adults with aphasia for hour-long chats.
The table topics at the clinic range from basic icebreakers (“Who’s your favorite celebrity? What’s a fun fact no one knows about you?”) to short word games and trivia contests. Each session challenges the participants on their recall of people, places and things, while the students gather valuable insights about how aphasia is experienced in the real world.
All the students are enrolled in a class, SHS 534 Aphasia and Related Disorders, taught by Teaching Assistant Professor Anna Pucilowksi. Department faculty have been hoping to add a real-life dimension to the class for years, and now, they finally have it.
Abby Franz, a longtime SLP and instructor at the Illinois clinic, has facilitated the weekly aphasia group since it kicked off in January.
“Our goal was to make sure the students understood this was an opportunity for the individuals who have aphasia to enhance their communication in a more informal social conversation because individuals who have aphasia often become isolated. They don't get the same social experience just because of their language impairment,” Franz said.
“This is an opportunity for them to come together, socialize and interact with other individuals who have aphasia, which they really appreciate—I'm finding that to be very important to this group.”
A new opportunity
According to the National Aphasia Association, at least 2 million people in the U.S. live with aphasia. The most common cause is strokes: nearly one-third of the strokes that occur each year in this country, roughly 225,000, result in aphasia.
For such a prevalent language disorder, SHS faculty felt their students needed more exposure to understand aphasia more fully.
“It was really obvious that our master's students were not having real-life experience talking to people with aphasia,” Pucilowski said. “For previous cohorts of students, the course material just seemed really theoretical. I can show them videos, but they're not actually learning what it's like.”
Though this aphasia communication group is completely new for the Department of SHS at Illinois, similar conversation groups are common at hospitals and recovery centers across the country, Franz said. An aphasia communication group existed at Carle Hospital in Urbana, but it petered out prior to the COVID-19 pandemic.
At SHS, the need for more in-person interaction began bubbling further when the department yielded a larger-than-usual cohort of students. Then, the Audiology and Speech-Language Pathology Clinic became certified to accept Medicare clients last spring, bringing in more older adults to the clinic.
Pucilowski and Franz put together a proposal for the aphasia group in fall 2024, and the plan was quickly accepted. All that was left was to find participants.
To get the word out, they relied on word-of-mouth and some boots-on-the-ground flyer marketing, mainly in nearby health care facilities. In the first semester, around five regular participants have continued to show and chat with Franz and the students.
Aphasia manifests in a broad spectrum. On the severest end, clients with aphasia may struggle to communicate a single word or sound, or their comprehension could be significantly impaired. On the milder side, individuals with aphasia may speak quite fluently, Franz said, even if they misuse or mispronounce certain words, or halt as they try to recall the correct phrase.
In the current aphasia communication group, participants are all on the milder end of the spectrum. More importantly, they’ve gotten along swimmingly.
“The group's really pretty fluent. The dynamic's great,” Franz said. “They all are very unique and have a lot in common and are very interesting individuals. And that was just purely by luck.”
The ‘best hour’ of the week
At their Wednesday session before spring break, students and participants in the aphasia communication group were asked to describe their experience with the group in one word.
Student Michaela Herwig chose the word “blessing.”
“It’s been really cool learning about them as people,” said Herwig, who’s training to become a clinical SLP. “Because before they had their strokes and before they had aphasia, they’ve lived very cool lives and they still do really cool things now, even though they might have to adapt them in different ways.”
As the weeks went on, new fascinating biography details kept leaking out from the participants. Many of the participants happen to be world travelers, for example, having spent years living overseas or learning different languages.
Within Herwig’s class of future speech-language pathologists, word about the aphasia group is starting to spread.
“We all describe this group as the best hour of our week,” she said. “Being in this group has solidified that this is a population I really want to work with when I graduate.”
For the students, each hour in the group is an opportunity to improve their clinical writing skills when working with individuals with aphasia and practice the right communication approach with these clients. In the first phase of the aphasia class, students complete a supported communication training where they learn strategies of how best to interact with patients with aphasia.
When a speaker with aphasia is working to get their point across, subtle nods and nonverbal cues in response go a long way. Sometimes, the students will rephrase a question to make sure everyone’s on the same page or ask the participant to write down the sentence they’re caught on.
“People who have a language disorder, they have full lives and they’re doing their best to recover and get through life,” said Tony Jacobs, a first-year SLP student who was placed in the group. “To see people with aphasia holistically and not just learning about it in class is one of the best parts of this group.”
In the second part of the aphasia class, students design their own eight-week aphasia intervention program—anything from a book club, to a volunteer group, exercise club or another socially driven way to engage participants. The aphasia communication group provides a hands-on learning experience of what these programs can look like.
“The way aphasia is getting treated nowadays, it’s with what's called the ‘life participation’ approach to aphasia,” Pucilowksi said. “You don't just come to a clinic and do some exercises and expect your language to change. You have to situate it in context, and language happens in groups and communities.”
The road ahead
What does recovery look like for a person with aphasia? With the most common cause being a stroke, the severity of the stroke and age of the patient are the main variables. Most patients can expect their fastest language recoveries in the first 3 to 6 months. A year out, progress typically levels off.
Communication groups target the isolation that comes with aphasia, improving the participants’ social health as much as their physical health.
“If we can improve their life, even if it's just one of them, if they're feeling more comfortable socially and we're enhancing their life, then the goal is met, right?” Franz said.
With the first semester wrapping up smoothly, the class, instructors and participants want to keep this aphasia communication group going. There are undoubtedly more people in the Champaign-Urbana area with aphasia, and more students in the department eager to learn from the experience.
“If we can start offering these eight-week programs and groups, and more niche specialty groups, I think that would be great for the students and great fun for the participants,” Pucilowski said. “That would be my dream.”
From the time she walks into the sessions on Wednesday mornings, Mary Moore can hardly wipe the grin off her face. It’s hard to believe now, but months ago she was on the fence about joining the aphasia group at all. After understanding her diagnosis, she became determined to “do her homework.”
“I just had to get better. I had to get better,” Moore said. “I just decided I wanted to go, no matter whether it was in winter or whatever, that I wanted to go. So I did.”
Moore feels a weight lifted when she’s back in the room with Franz and the students. Gone are any airs of judgment when she stammers searching for the correct word, only patience and understanding.
Her advice to any adults with aphasia thinking about joining: “Go for it.”
“The students are wonderful, and they are very kind. They don’t talk about you, they listen to you and they care about you,” Moore said. “It’s just so good, it’s beyond belief.”
(Interested in joining the aphasia communication group, or want to learn more about the Audiology and Speech-Language Pathology Clinic? Contact shsclinic@illinois.edu or call 217-333-2205.)