EAU CLAIRE — Wayne Zorn has always loved to sing. He performed in several choirs over the years and often sang around the house to his wife CeCelia Zorn.

That was before aphasia.

Aphasia, a communication disorder, has severely limited Wayne’s singing ability in recent years but hasn’t completely taken away his musicality. Through daily practice and professional assistance, he can learn a song in four to eight months. That work paid off recently when he performed three songs with CeCelia and music coach Nancy Wendt during a small backyard concert.

Wayne continues learning despite the difficulties, a concerted effort he and CeCelia made after his diagnosis six years ago.

The Zorns, who are both retired and live in Eau Claire, aim to have “continued participation in life and the activities that were close and meaningful to us,” CeCelia Zorn said. “Maintaining the highest quality of life as possible simply makes us happier. Learning new things is stimulating. Contributing to others’ and the community’s well-being is essential and satisfying.”

COVID-19 has presented challenges to the quality of life for Wayne Zorn and other residents with aphasia. Travel and visits with friends and family are limited. Loved ones worry about potential hospitalization for someone with communication difficulties. An annual aphasia camp slated for next month was canceled.

The main effect of coronavirus is the decrease in socialization, which already happens for many people with aphasia because of communication limitations. In-person interactions are rarer, leading to more isolation. Despite barriers, the need for connection remains.

Diving in

Aphasia is an acquired communication disorder, meaning no one is born with it. Aphasia limits a person’s ability to process language, making it difficult to speak and understand when others are talking. It also often restricts reading and writing ability.

Several types and severities of aphasia impact different aspects of communication, which is separate from affecting one’s mental acuity.

“For people with aphasia it is the ability to access ideas and thoughts through language — not the ideas and thoughts themselves — that is disrupted,” according to the National Aphasia Association.

Mary Beth Clark, a speech language pathologist and clinical manager of rehabilitation services at Mayo Clinic Health System, said it is crucial to remind patients with aphasia of their abilities and value.

“We help the individual with aphasia know that they are still the same person — they are intelligent and can make decisions,” Clark wrote in an email.

About two million Americans have aphasia. It is most often acquired after a stroke but can also result from a head injury, brain tumor or other neurodegenerative diseases. Aphasia most commonly affects people age 45 and older, but it can impact all ages.

Wayne Zorn has primary progressive aphasia, which causes a gradual worsening of communication skills and is not the result of a traumatic injury. PPA often starts with the loss of language and steadily deteriorates. CeCelia Zorn noticed something had changed when her husband could not remember words like “shirt.”

His speech became less frequent over the years, and now Wayne repeats one phrase hundreds of times per day: “Yeah but like that.” He cannot write or talk other than that phrase but takes singing lessons and illustrates on his iPad to express himself. The Zorns’ conversations often entail nonverbal communication. CeCelia sometimes puts a few words on a piece of paper and Wayne will circle or point to the one he wanted to say.

Neither of the Zorns knew much about aphasia before his diagnosis, but they accepted their new reality and learned more about the disorder.

“We took a deep breath and dove in,” CeCelia Zorn said.

Despite some limitations, they made an emphasis to continue their lives in a similar fashion by biking, camping and snowshoeing. They also received local support, including from many people CeCelia knew at UW-Eau Claire, where she worked in the College of Nursing for 32 years and is a professor emerita.

“I cannot overemphasize the value of that (support),” CeCelia Zorn said.

Finding connections

A local aphasia group began in 1997 to reduce isolation and increase confidence and social connections for people with aphasia.

“We wanted to provide the opportunities for individuals with aphasia to improve their expressive and receptive skills, but it was more than that,” Clark, a group co-founder, wrote in an email. “We wanted to impact their community.”

The group grew into a nonprofit, the Chippewa Valley Aphasia Network, which facilitates area programming for people like Wayne Zorn and often works with UW-Eau Claire.

Tom Sather and his colleagues handle several programs involving aphasia at the university. Sather, an associate professor in the UW-Eau Claire Department of Communication Sciences and Disorders and CVAN board member, works to provide students with hands-on aphasia experience. Students have the option to host an eight-week aphasia group exercise class with a kinesiology student, for example. Another possibility involves meeting weekly with a community member who has aphasia and conversing, playing cards or shopping to gain a better sense of their daily life. Sather said up to 65 people with aphasia work with Blugolds every year.

Those programs changed a few months ago when coronavirus hit and now occur online. That will continue at least into the fall semester, which Sather said has provided communication challenges but also new opportunities. This summer involved telehealth speech therapy through the university clinic, for example.

Some students participated in virtual meetings for aphasia in recent months. The gatherings of the Chippewa Valley Aphasia Group entail life updates from and discussions between several people with aphasia. Group members enjoyed gathering with others going through similar challenges. That is still possible now, but not to the fullest extent. Virtual meetings are less personal and increase the barrier for entry, particularly for older residents without easy online access.

Sather, a CVAG staffer, said meeting attendance increased in late spring when nearly everyone quarantined at home but has dipped a bit since then.

“Just like any group that you have identity with, I think there was a sense of unity and a sense of common experience,” Sather said.

The group ideally provides a sense of belonging. With communication challenges, many people are less likely to play golf in a group, meet a friend for coffee or attend a book club.

Even before the pandemic, Eau Claire resident and CVAG member Tim Kersten spent less time with friends for fear of making a mistake. For five years he has had expressive aphasia, also known as Broca’s aphasia, as a result of a stroke.

Kersten often worries about forgetting a word or misspeaking in a group setting.

“It’s kind of like a fog around your head,” Kersten said. “I’d rather not say anything if I don’t have to.”

CVAG members Warren and Deb Wampfler live in Siren, about 100 miles northwest of Eau Claire. He had a stroke nearly 10 years ago and acquired expressive aphasia.

“It’s hard to talk,” Warren Wampfler said.

Deb Wampfler said they have lost friends since her husband‘s diagnosis, often because of lack of understanding or impatience with his challenges.

Indeed, group members said it can be difficult to describe aphasia since most people know little or nothing about it. Misconceptions include incorrectly believing the disorder leads to mental impairment, while others think someone with aphasia is hard of hearing and unnecessarily talk louder or shout. CVAG members also noted the importance of explaining that primary progressive aphasia gradually gets worse over time, so well-meaning wishes for improvement are impractical.

That applies to Joe Lando, who has PPA and often doesn’t express precisely what he means.

“What I want to say doesn’t come out right,” said Lando, who resides in Grantsburg, about 120 miles northwest of Eau Claire.

Gail Lando sometimes feels like she is in a continuous game of “Password,” constantly guessing what her husband meant to say as he attempts to describe a word. That can be stressful and frustrating for both of them.

Deb Wampfler agreed.

“It’s like playing charades all the time,” she said.

Nancy Kersten has had similar experiences with her husband.

“You try not to get mad, but sometimes you do,” she said.

Tim Kersten said the effects of expressive aphasia are inconsistent. He can talk with a friend for a while without issue one day, while another day he may have trouble remembering the friend’s name.

Nancy Kersten said the disorder presents difficulties for both of them, but they have adjusted over the past five years. Expressive aphasia has limited Tim’s reading and writing ability, but Nancy said her husband has a positive attitude and is always working to improve by doing activities like listening to audiobooks.

Those loving, occasionally difficult relationship dynamics provided a learning tool for two UW-Eau Claire graduate students. Maija Mattson, a student in the communication sciences and disorders residential graduate program, said she has a much better sense of communication challenges and support required for people with aphasia after observing group meetings.

Rachel Hurtado, a student in the communication sciences and disorders online graduate program, said interacting with people with aphasia “is infinitely more valuable” than classroom lessons.

Photographs and postcards

Wayne Zorn is a CVAG member and also stays connected through sharing photographs on his iPad. CeCelia writes a caption of them biking, for example, and Wayne copies what she wrote onto the photo and sends it to friends and family.

Her husband’s communication is drastically altered, but CeCelia said Wayne is the same man she married: precise, generous and quick to smile.

“I’m grateful that those characteristics have continued,” CeCelia Zorn said. “This is the Wayne I knew.”

Challenges exist, but the Zorns often share small moments of joy throughout the day, particularly when he does a task without her asking, such as trimming their flower bed. Wayne always lights a candle at the dinner table, and every holiday he purchases flowers for CeCelia.

“It’s his actions that show his thoughtfulness and generosity,” Cecelia Zorn said.

Wayne enjoys human contact and often gives hugs to express his affection when he cannot verbalize it. That in-person connection has been severely limited in recent months, a difficult adjustment.

Another local offering helps provide connection for the Zorns. Carin Keyes, a speech language pathologist, started an area group in November 2015 that participates in Postcrossing, an international organization.

Members sign up and receive a postcard ID along with addresses around the world of people with whom they can correspond. Keyes aims to provide participants with sociability; writing practice; the chance for authentic conversations; and opportunities for aphasia awareness. The group has sent nearly 300 postcards to people in 48 countries since it began.

Keyes said COVID-19 has decreased group participation, perhaps due to technology challenges, but several regulars still take part. The Postcrossing group stopped meeting in-person in March, and many members miss gathering at a coffee shop to discuss what to include in a postcard.

“You can still get a social interaction with the group online, especially since everyone knows each other … but it’s not quite the same,” Keyes said.

It can be tough to write with aphasia, so Keyes developed a script for the postcards. She wrote short sentences group members can use, which include sharing their aphasia diagnoses and asking if the recipient knows anyone with aphasia. Often, people on the receiving end are introduced to the disorder and write words of encouragement.

Keyes called that gradual increase in understanding one of the most rewarding aspects of her work.

“I think our group members are just very happy and proud that they’ve made aphasia something that people are aware of,” Keyes said. “The more awareness, the more easy it is for them to go out and communicate and be able to do things that they did before.”

Camp life

A different entity offers people with aphasia the chance to try things they’ve never done before.

The Chippewa Valley Aphasia Camp started in 2004 but was canceled this year because of COVID-19. The three-day event occurred on a September weekend at the Eau Claire YMCA Camp Manitou in New Auburn and included people with aphasia, their families, friends and students and professionals with aphasia experience.

Sather, a camp board member and staffer, said there were about 100 attendees last year, including 33 campers with aphasia. Most campers are between 50 and 70, but ages can range from 20 to people in their 90s.

The camp has lessons on an array of topics and provides the opportunity to try hands-on activities like fishing and archery.

“Just because they have aphasia doesn’t mean they should have any less access or opportunity to go boating, to have coffee by the campfire, to play horseshoes,” Sather said. “Everything is set up so that it supports people with aphasia, and the goal is that aphasia becomes transparent. You don’t have to explain, ‘Hey, here’s why my husband can’t tell you what he wants to eat.’ Everybody knows.”

There will be a modified online camp this fall, but Sather said nothing can replace the in-person experience.

Joe Lando, who has primary progressive aphasia, attended the camp and enjoyed meeting new people and trying new tasks.

“I liked it so much,” Lando said.

With no camp this year, CeCelia Zorn won’t witness Wayne‘s smile when he tries something new or jumps into a lake.

“It was a really special time,” CeCelia said. “I (will) miss seeing his joy and knowing how much he appreciates that.”

Keyes worked as a camp staffer the previous four years, the final two of which she helped develop curriculum and taught lessons on photography and genealogy. Keyes will miss socializing with new and familiar faces at the camp and seeing campers’ friendly interactions.

“They have people who have common difficulty that they can talk to, and they become family,” Keyes said.

The same is true to an extent for CVAG members. As people with aphasia described their lives during a meeting last week, they often paused to remember their train of thought, occasionally forgetting what they were going to say. There lies the difficulty of aphasia: it is nearly impossible to verbalize what it is like to have language troubles.

Chris, who preferred to use only his first name, had a stroke in 2017 and has expressive aphasia as a result. He couldn’t talk for months afterward but has worked with a speech language pathologist to improve over the years.

At one point while answering a question, Chris lost his line of thinking.

“See, that was the aphasia,” Chris said. “Shoot. I’m sorry.”

The group quickly responded with encouragement.

“You’ve come a long way since we first met you,” Nancy Kersten told Chris. “You really have improved a lot.”

COVID-19 has presented additional challenges to locals with aphasia, but through activities like Postcrossing and group meetings, they have worked to maintain a sense of connection.