Kerensa Boates takes part in the UD Aphasia Summer Intensive in 2019 with Cynthia Hagerty Rodhe (Class of 2019), and Christine Cook, director of clinical research and services at UD’s Speech-Language-Hearing Clinic.

Thriving with aphasia

Article by Amy Cherry Photos by Ashley Barnas April 28, 2022

UD’s Speech-Language-Hearing Clinic gives stroke survivors a path forward

Mertro Robinson, Mike Janis, and Kerensa Boates have been living with and thriving despite a largely invisible impairment for years.

Robinson of New Castle, Delaware, was a senior human resources director, working overtime for a large supermarket chain in Maryland and was gearing up to leave for a cruise with her now late husband when she went to use the restroom and fell in December 2004.

“I was calling out for help, but I couldn’t hear my external voice,” she said. “My assistant called 911.”

Mike Janis of Newark was taking a spin class at the gym with his son, who was the instructor, on Jan. 1, 2016, when a friend told him:

“‘You’re not talking right.’ He said, ‘I think he had a stroke.’ I felt fine. Everybody said that I couldn’t talk. I wasn’t saying the right thing,” Janis said.

Kerensa Boates didn’t realize she had a stroke when it occurred in November 2015. She was on the phone with her mom, who told her she wasn’t making sense. That’s when her mom called 911.

“I wasn’t talking,” Boates said. “I could walk, but I couldn’t find my sneakers. I couldn’t hear people.”

All three were hospitalized and ultimately diagnosed with a stroke that triggered aphasia, a language impairment that affects a person’s ability to communicate. It often follows a sudden traumatic event that includes brain damage, according to Rebecca Hunting Pompon, an assistant professor in the University of Delaware’s Communication Sciences and Disorders Department.

“Most of the time aphasia and stroke go together. About 30% of people who have a stroke are left with aphasia,” Hunting Pompon said. “Some people can recover quickly; they may experience aphasia in the early days and weeks, and then that part of their post-stroke impairment subsides. For other people, it’s a chronic condition that extends for the rest of their life.”

Aphasia affects a person’s ability to find the words they want to say — an ability many of us take for granted.

“People with mild aphasia may have to work at putting words together, and that can be very variable,” Hunting Pompon said. “If they’re in a quiet environment, they don’t have much trouble. Put them in a coffee shop, put them in a family gathering with lots of conversations going around, it becomes very challenging.”

Someone who has a more moderate form of aphasia may have impacts that are more noticeable to members of the public — even if they don’t identify it as aphasia.

“They may be able to carry on a conversation well, understand most of what we’re saying, and participate in their life in a typical way,” she said. “Maybe they’re not working anymore because that’s a bit too hard, but they’re still able to live life with some adjustments.”

Hunting Pompon said some with aphasia also confuse words.

“They want to say dog, and they say cat, or they want to say the chair, but they say table, or they may have other word errors — they’ll say chairs when they mean chair,” Hunting Pompon said.

Aphasia can affect how a person reads or writes to some degree, further illustrating how differently the impairment can manifest from person to person.

“I could not utter a word for about a week or so,” Robinson said. “I had to use sign language. I was so frustrated. I was angry, my mind was jumbled.”

Janis remembers a nurse showing him a flashlight.

“I knew what it was, but I couldn’t tell you what it was,” he said.

All three had no idea what aphasia was prior to their diagnoses. Neither did most of the American public until actor Bruce Willis went public with his aphasia diagnosis last month. The diagnosis put an abrupt end to the 67-year-old’s prominent acting career.

“They don’t walk around with a cane, or a limp, or a sling on their arm. You can’t see it, but it’s very present,” said Christine Virion Cook, director of clinical research and services at UD’s Speech-Language-Hearing Clinic.

Mike Janis participates in the UD Aphasia Summer Intensive in 2019 with now-alum Andrew Parcell and clinician Meredith Bailey-Orr.

Aphasia is not a long-term memory-related or cognitive impairment. For example, if Willis could accurately read his lines, he could likely remember them. In a statement, Willis’ family said his aphasia was “impacting his cognitive abilities.” This differs from the form of aphasia that Robinson, Janis, and Boates had after their strokes.

“Primary Progressive Aphasia is often tied to a progressive neurological impairment like Alzheimer’s or dementia,” Hunting Pompon said. “The aphasia community has worked really, really hard to communicate that aphasia is not cognitive — it’s not an intelligence issue — and so they constantly have to fight that: ‘Yes, I can’t get my words out, but I know exactly what I want to say.’”

Hunting Pompon said two types of therapy in practice at UD’s clinic include restorative and compensatory treatments. Restorative treatments work on the brain to establish complex networks so people can more easily find their words while compensatory treatments give people strategies to communicate in day-to-day life. Both have benefits and drawbacks to them.

“Compensatory treatments don’t necessarily help the brain regain its ability to put language together,” Hunting Pompon said. “Restorative treatments don’t help you order coffee at the coffee shop right away, and they usually require a lot more intensity.”

Janis and Boates attended speech therapy at the UD’s Speech-Language-Hearing Clinic for a few years. They’d later become friends after meeting at a UD aphasia support group.

“I would sob, and now it’s so much better,” Boates said. “They helped me learn to talk, which I couldn’t do at all. I love speech therapy.”

Without UD’s speech-therapy clinic, the 80-year-old Janis said he’d never be where he is today.

“I couldn’t even say aphasia,” he said.

Julie McCauley, lead master clinician in UD’s clinic, worked directly with Janis and Boates and said their motivation helped them see success.

“Mike is an unbelievably motivated human being, who works hard and is hard on himself,” McCauley said. “He is very social and enjoys conversing with other people. We individualized treatment to target words and sentences that he may need in day-to-day life. We wanted to return his ability to share his stories. He is a family man with many stories of his days in the Navy, being a soccer referee and assessor, and has post-stroke interests in horticulture and participating as an extra on TV and movie sets.”

Others without the internal drive to see gains need a different type of inspiration.

“It is hard work,” McCauley said. “We take for granted that communication is fairly seamless and automatic for those of us that don’t have aphasia. Sometimes part of motivating a person with aphasia can include introducing them to people like Kerry or Mike, who’ve walked in their shoes.”

Cook said aphasia treatments vary.

“There’s a lot of mythology that the first year after your stroke that’s all you get in terms of your recovery, and we know that’s not true,” Cook said. “Folks continue to make gains years and years and years after they’ve had a stroke.”

But just as they experience gains, patients also experience setbacks. During COVID-19, some people with aphasia who live alone regressed while in isolation. McCauley said some family members of people with aphasia have reached back out to restart services during the pandemic.

“When I was home, just me and the dogs, I wasn’t talking as well,” Boates said. “With Zoom, if we see people, it was so much better.”

That’s where UD’s clinic pivoted to online services, serving dozens of patients.

“Being able to offer services within the home during the pandemic was very rewarding,” McCauley said. “Providing telepractice was always a goal anyway to reach folks in geographic areas that didn’t have access to services, but once COVID hit, if there was a silver lining, it was that.”

Support groups also went virtual and increased in frequency.

“That we were able to transition to an online format so quickly and just be a place where our people could come and interact, it helped people so much,” said Kristen Palmer, a speech pathologist in UD’s clinic. “All of the participants were just so appreciative of having a place to come and connect.”

Cook described the telehealth services, spawned during COVID, as a lifeline for some.

“People told us — ‘This is the only time I talk to somebody else,’” Cook said.

Speech pathologist Kristen Palmer, Lisa Bayard, Michael Hadley, Mike Janis, and Bob Mitchell meet with former graduate students Kelly McGarry and Lane Williams (Class of 2020) at a Blue Hen Brew Crew gathering. This coffee house-style support group for people with aphasia has since gone virtual due to the pandemic.

McCauley is also the coordinator of UD’s Aphasia Summer Intensive (UDASI), which benefits community members with aphasia and speech-language pathology graduate students. UD is one of just eight intensive comprehensive aphasia programs in the country and one of 14 internationally, according to an article published in Disability and Rehabilitation. After being virtual last year, this year’s summer intensive will return to an in-person format and will feature a combination of individual, small group, and large group sessions.

“We incorporate a life participation approach to aphasia so that means that our goal is to incorporate skills that a person needs in their everyday life to return to participating in activities that they enjoy,” said McCauley. “If they have a goal of rejoining a book club or ordering for themselves at a restaurant, then we want to make sure that we incorporate therapy tasks that build their ability to be successful with those tasks in their daily life.”

The connections made at the summer intensive are awesome to see, said Palmer.

“It was such a great collaboration,” Palmer said. “Not only do we see our patients improving but because they’re getting support from their peers, it’s neat to see them just being themselves and talk to people who understand what they’re going through.”

But for many people with aphasia, it’s also about making accommodations so everyday life is easier.

Even six years after her stroke, Boates finds herself having to tell people: “I’m not drinking. I had a stroke.”

McCauley said unfortunately, that’s common.

“People in the community have had limited experience interacting with someone with aphasia so they automatically assume that they might be under the influence of something,” she said.

McCauley pointed to a wallet card that Boates carries around that shares information about her and aphasia for moments when she has trouble finding the words in a particular situation.

Boates also has a TouchTalk speech-generating device that helps her find the words, particularly in higher stress situations; she also carries paper with her all the time as a back-up method of communication, especially while ordering food. Advances in online ordering have made her life easier.

But even with these tools, Boates still has a hard time in certain situations — like switching insurance carriers.

“I can do it, but it’s really a pain,” said Boates, whose sister handled that for her.

For some of those tougher situations, she has a communication binder that aids her in scheduling things like car maintenance.

“Kerry did very well in services because she’s very motivated, she works very hard, and she actually applies all of the things we’ve taught,” McCauley said. “She uses all of her tools really well.”

For Janis, stroke and aphasia permanently halted his career as a professional soccer referee and assessor, and while he misses it, he’s grateful.

“After 40 years, there’s no refereeing in my life,” he said. “But I consider myself pretty lucky. Life has been good for me.”

But it didn’t stop him from being an extra in the popular Netflix political thriller House of Cards.

“Because I didn’t have to talk,” he joked. “My boss would get me in the shot — I was a senator.”

While most people would never realize she has aphasia now, Robinson’s diagnosis ended her decades-long career in HR. She’s happier though without it.

Beyond speech therapy, Robinson said signing up for Toastmasters International in 2007 was the best thing she did to improve her public speaking and communication skills.

“They have helped me a lot,” Robinson said. “They did not know about aphasia — that education was part of my speeches—going into the neurological aspects of it. They all said that they would have never known how aphasia affects people differently.”

She also took part in a handful of aphasia research projects at UD as well as the Blue Hen Brew Crew, a coffee house-style support group for people with aphasia and their caregivers, which meets weekly on Zoom.

“It gave me people that understand what I’m going through,” Robinson said. “It was immensely important because it opened my eyes to the depths of aphasia.”

But even she had bad days, where she feels anxiety creep in, and aphasia takes hold.

“I feel my progress has been great, but sometimes I still get frustrated when I think it’s all better, I can speak normally, and then I have something that happens that takes me back. Anxiety brings upon the challenges of aphasia,” Robinson said. “I feel like I’ve got the devil and the angel on my shoulders.”

Robinson and Janis now serve as strong advocates and role models for people with aphasia.

“As long as I can say something — even if it’s just to one person — to help them out, I feel great,” Robinson said.

Janis’ advice to others: “Take your time, pay attention to what you’re saying, slow down — because I didn’t — and say something nice when you look at yourself,” Janis said.

But the three clinicians in UD’s clinic are in awe of how far these stroke survivors have come.

“I know that that is 100% because of their hard work, their dedication, their perseverance, especially through the pandemic. A lot of these folks felt so isolated,” Cook said.

“It’s wonderful. It’s great to see the impact you can have on people’s lives,” said Palmer.

“It really warms my heart,” McCauley said. “It’s a tremendous privilege to be able to be there for somebody when they have suffered such a big life event, and when we can support them and see them thrive and be able to enjoy quality of life, that is incredibly uplifting.”