Words That Bind



The weekly aphasia communication group is the ‘best hour’ of everyone’s week, one member said. (Photo 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 from strokes: nearly one-third of the strokes that occur each year in this country, or 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. 

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.

Abby Franz

SLP and instructor at the Audiology and Speech-Language Pathology Clinic

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. 

The class, instructors and participants want to keep this aphasia communication group going. (Photo by Ethan Simmons)

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.)

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Bruce Willis’ diagnosis brings aphasia to forefront



Bruce Willis’ aphasia diagnosis went public in April 2022.

Aphasia is a communication disorder that affects understanding and expression. It can make it difficult to speak, write, listen, and read. But despite its dire impact on people, aphasia is not a well-known condition. In fact, according to a 2016 survey by the National Aphasia Association (NAA), less than 10 percent of respondents knew what aphasia was.

But the announcement in April 2022 that Bruce Willis would be stepping away from acting following an aphasia diagnosis has raised awareness of the affliction, said Abby Franz, a speech pathologist and clinical instructor in the Department of Speech & Hearing Science at University of Illinois.

“I feel awful for the family and his situation and that he has that diagnosis,” Franz said. “But in 2016, the NAA conducted a survey and found only 8.8 percent of the respondents knew what aphasia was and correctly identified it as a language disorder. So certainly Bruce Wilson’s diagnosis can bring awareness to aphasia. But it’s common. More than two million people are living with aphasia in the United States, and for only 8 percent of the general population to know what it is and know that it was a language disorder, that’s pretty significant.”

Aphasia is an acquired communication disorder, Franz said, which means that it’s something that happens during the course of a life. It’s not something that is present from birth. It is an acquired neurogenic communication disorder, usually as a result of a stroke or some type of brain injury, she said.

There are many types of aphasia, and they are usually diagnosed based on which area of the language-dominant side of the brain is affected and the extent of the damage.

“Typically, it is something traumatic like a type of traumatic brain injury, either they’ve fallen, they’ve hit their head, they’ve been in a car accident, which has affected the area of the brain that controls our speech and language, or a sudden stroke that has left them with difficulty with speech and language,” Franz said.

“But there is another type of aphasia called primary progressive aphasia. That is a degenerative disease that is caused by a type of dementia—frontotemporal lobe dementia. It isn’t a sudden onset change in language. It’s a gradual deterioration of brain tissue in the frontal lobe of our brain that causes, over time, kind of your language to really deteriorate and comprehension of language to deteriorate.”

Franz did not want to speculate about whether Willis has primary progressive aphasia (PPA), but said what she read about his diagnosis lead her to believe he is afflicted with PPA.

“When you have a stroke, it just happens, like suddenly onset. So there wouldn’t be this gradual deterioration” of what has been speculated to have happened to Willis, she said.

Primary progressive aphasia symptoms are akin to dementia. Franz said, with primary progressive aphasia, there would be difficulty with word finding, difficulty sometimes with even just the production of speech, or more effortful for them to even just formulate a sound. They may have a loss in just the fluency of speech as well as the comprehension of speech.

“Somebody who has primary progressive aphasia, if I showed him (a pen), he or she may not be able to name it, but then they also may not even be able to tell me what it does. So they lose that ability to even know this is a pen and we write with it,” she said.

As a speech language pathologist, Franz said she makes aphasia determinations based on how patients perform on certain tasks during a language assessment.

“We’re also testing their comprehension of language. We’re looking at their ability to follow simple directions, follow two-step directions. And we’re looking also at their ability to write after a stroke or after a brain injury because sometimes those go hand-in-hand with the loss of language.”

That said, an aphasia diagnosis is not always without hope. With the help of rehabilitation intervention provided by a speech-language pathologist, people with aphasia from a stroke or other brain injury can improve. SLPs partner with people with aphasia and their families to improve communication skills and develop strategies to support their communication strengths, and may assist with using an augmentative and alternative communication speech devices for those individuals if needed.

However, Franz speculates that because Willis’ family said the actor would pull back from public appearances, she believes he has primary progressive aphasia, and that the prognosis for that is not promising. According to the NAA, the average life expectancy from onset of the disease is 8 to 10 years.

“It is that dire when you get that diagnosis,” Franz said. “It’s a very slow progression of the loss of their communication and along with this kind of dementia too that goes along with it.”

Talking about PPA is “very personal” to Franz.

“My parents’ best friend was diagnosed with primary progressive aphasia in 2017,” she said. “And he’s still living. I see the professional side of it. But now I’m living it on a personal note. And it’s been very hard.

“When he got the diagnosis, I had to do a lot of education with my family about it, especially my parents. Because this was their best friend, and he’s been a part of my life since I was born. And you know, I had to educate them a lot about what primary progressive aphasia is and what it’s going to look like at the end of life. So that is not a great diagnosis to have. So I understand, for the family, why they are probably wanting to shield Bruce Willis from being in the public eye.”

When a public figure such as Willis is afflicted, it often brings an opportunity to educate people about a disease or medical condition.

“The National Aphasia Association is a great website and a great reference for anybody to learn more about aphasia or just to understand more about what it is, and find support groups, within your local community,” Franz said. “It’s a great reference and website to look for if you have a family member or know somebody who has been given the diagnosis of aphasia.”

For more information about aphasia, go to https://www.aphasia.org/


 

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Department of Speech and Hearing Science
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