What It’s Like to Live With Aphasia
Published June 2020
Language Disorder After a Stroke
“Hi, how are you?”
It’s a phrase you might take for granted. But for people living with a language disorder known as aphasia, it’s a milestone that underscores their ability to start and hold a conversation with others.
Program Lead Clinician and Speech-Language Pathologist Michelle Armour, MS, CCC-SLP, describes how the Northwestern Medicine Aphasia Center at Marianjoy is helping individuals work toward goals individualized to their needs — in particular, communicating with others.
What Is Aphasia?
Aphasia is a language disorder that hinders your ability to communicate with others. It is often caused by stroke or a head injury, and it can impact your ability to talk, write or understand words. “Every stroke is different and affects people in a number of different ways,” says Armour. “It never looks the same from one person to another. When it comes to aphasia, there are different types of challenges with communicating.”
The level of severity of aphasia varies greatly. For example, saying, "Hi, how are you?" is an accomplishment for some people. Yet even when challenges are overcome, difficulty finding words can be something that persists for the remainder of a person's life. Fortunately, there are individuals who not only understand these challenges but offer an array of helpful resources to help them thrive and meet their goals.
Aphasia can cause challenges that affect social life and relationships. The Aphasia Center offers a supportive group environment where individuals can work together to become more comfortable communicating after a stroke or brain injury.
The Aphasia Center offers all-inclusive programs that tailor activities to meet each individual’s needs. Functional activities include a book club, technology, cooking, writing, music and art, math, games, and conversation. Perhaps most important is the human connection through language.
Meet three individuals, each with their own unique challenges and goals, and how they are using the center to find the tools they need to attain their goals.
Importance of Connecting With Family
When it comes to making connections, Ed Leman works to stay connected and improve his ability to communicate with his family.
Leman was the superintendent for West Chicago Elementary School District 33 when he suffered a stroke at the age of 57 in 2012. He was taken to Northwestern Medicine Delnor Hospital by ambulance, and then transferred to Northwestern Medicine Central DuPage Hospital where he underwent a 14-hour surgery to remove clots from an ischemic stroke. After being stabilized, he was transferred to a rehabilitation hospital where he spent about six weeks learning to walk again.
When he returned home, he began outpatient therapy at Northwestern Medicine Marianjoy Rehabilitation Hospital. After a few years, Leman started attending the Aphasia Center. In the beginning, his goals were to regain his speech because he could not make any sounds. He has now progressed with speaking to communicate more functionally. Going forward, he hopes to continue learning how to text and stay in contact with family and the friends he has made through the center.
“We are so grateful for the Aphasia Center at Marianjoy and how it helps stroke survivors live their daily lives better. You cannot make someone recover faster than they can, and Ed has been recovering for many years,” says his wife, Jenny.
Doing What You Love
For many people with aphasia, rediscovering the activities that bring them joy helps them recover. Meet Jim Runyon from Wheaton: In January of 2013, he was a very fit 63 year old who recently finished the Chicago Marathon and three triathlons. At a time he considered himself the healthiest he’d ever been, Runyon suffered a stroke that would change everything.
Formally a high school chemistry teacher, he received a second master's degree in computer science. This opened the door for him at AT&T where he analyzed data, made presentations and worked on an industry-wide communications advisory board.
Outside of work, he stayed active — particularly with his four children. He was in good shape and, on the day of his stroke, had actually worked out twice. He was getting ready for bed when he collapsed.
“I couldn’t get him to respond to me,” says his wife, Merrilee. By the time help arrived, Runyon was able to get up and meet the paramedics at the door. However, while he was in the ICU, he started having deficits, particularly on his right side.
This would begin a journey they never saw coming. “He was at Marianjoy Rehabilitation Hospital for five weeks and then came home in a wheelchair,” says Merrilee. “We didn’t know if he’d ever walk again. But we kept working at it and were continually impressed with how he would take on a challenge.”
Despite achieving many goals, his inability to communicate persisted. “It was hardest for him to get the ideas out into words,” says Merrilee. “The thinking was clear, but the process slowed down.” So, when they were introduced to the Aphasia Center, they met others facing similar struggles with communicating after a stroke.
These days, Runyon is using his knowledge to prepare and present to others, something that is reminiscent of his past. He selects topics based on his interests and background. “Public speaking can be a significant challenge for a person with aphasia. Jim has been able to prepare presentations and practice speaking with the use of strategies he discovered through lunch-and-learn sessions to group audiences in the Aphasia Center,” says Armour.
Although he sometimes still struggles to express his thoughts, he continues to practice his communication skills in a more public forum. “I really appreciate giving the presentations and being able to speak,” says Runyon. “This is one of the highlights of my week. I look forward to going to the center.”
Relearning and Moving On
Much like Runyon, Patrick Gutzmer, 46, hopes to reclaim as much as he can from his life before having a stroke.
At 45, Gutzmer, from Geneva, was the vice president of a bank. He distinctly recalls the day he had an ischemic stroke. “I knew something was wrong, and I went to the hospital,” he says. It was not until the hospital called the stroke code that he realized just how serious his situation was.
During his recovery, he received outpatient speech and physical therapy for two months. However, he felt like he wasn’t at his fullest potential, and as a result, he sought care at the Aphasia Center. “I had to relearn how to write, read and do math,” he says. “Even the alphabet.”
His goal was to get as close as possible to who he was prior to the stroke.
When he joined the aphasia group at the center, he was able to work on aspects of life that were once part of his daily routine — counting money, writing sentences and working with technology. The group inspired him every day. “It’s good to have someone going through the same thing right there beside you,” he says.
Gutzmer has since graduated from the program and is actively working on a Master of Business Administration degree. He exercises six days a week to stay physically active.
“You have to have faith and work at it,” says Gutzmer. “Right after my stroke, it was very sad and depressing in the beginning. But it just takes time. You have to force yourself to do it no matter how bleak things appear.”
Bottom Line: Help Is Available
Ultimately, Armour encourages those who have aphasia to “never give up.” From the supportive group environment to the programming and functional activities, the Aphasia Center offers resources and a supportive community to help people with aphasia achieve their personal goals while connecting with others who are experiencing similar struggles.
“It’s never too late to enroll in a group program,” Armour stresses. “A person can continue recovering years after a stroke. They just need the correct outlets and ways to practice. That is what the Northwestern Medicine Aphasia Center at Marianjoy offers to individuals with aphasia.”