UNIVERSITY PARK, Pa. — Ed Núñez, like many other Penn State alumni, has always felt a strong connection to his alma mater. Núñez suffered a stroke in June of 2020, which resulted in aphasia. During one rehabilitation session, he was wearing a Penn State shirt, and someone said, “We are.” In his head, he knew he wanted to respond with “Penn State,” but he could not get the words to come out.
Aphasia is a language disorder that occurs when brain injury — most commonly due to a stroke — impairs a person’s ability to understand or produce speech or written language. People living with aphasia retain their knowledge and memory, but they lose some or all of their language-processing ability.
Every 40 seconds, someone in the United States has a stroke, according to the Centers for Disease Control and Prevention. Of the millions who have a stroke every year, approximately one-third of them will experience aphasia as a result, according to the National Aphasia Association.
The communication deficits people with aphasia experience can be extremely isolating and take a toll on their mental health. Chaleece Sandberg, associate professor of communication sciences and disorders at Penn State who researches aphasia, said that rebuilding social connections among other individuals who have aphasia ensures they have a safe space to communicate. This is important not only in promoting recovery, but for individuals’ mental health as well.
However, finding resources and support options that not only are easy to access, but also resonate with the individual, can often be difficult for people with aphasia.
Núñez was determined to make more social connections with Penn Staters who were also affected by aphasia, so he set out to find someone at Penn State who worked with this condition. He learned about the Penn State Department of Communication Sciences and Disorders, and more specifically, Sandberg, whose work at Penn State focuses on finding ways of optimizing language therapy for adult language disorders, with a primary interest in aphasia.
Núñez connected with Sandberg, and they worked together to find other people with a connection to Penn State who also have aphasia. Through a mutual connection, Sandberg met Denise Mendez, another Penn State alum living with aphasia after suffering multiple strokes since 2017. These connections ultimately led to the formation of the Penn State Alumni Aphasia Group.
Even though its roots stem from the University, the group is open to support anyone suffering with aphasia, worldwide. Every member of the group has something to offer and something they can learn from other members, the founders said. The Penn State Alumni Aphasia Group meets virtually once a month, and they are always welcoming new members who are impacted by aphasia and want to participate in the group.
“I thought the Penn State group was a great idea. We all largely have the same wants from aphasia resources, and it was always the word ‘connection’ that kept popping up,” Mendez said. “The hardest part is finding resources that you can access and resonate with. I have degrees from three universities, but Penn State stays with you. It’s a great connection for people with aphasia.”
Sandberg said giving people with aphasia a safe space to practice talking with others that understand the struggles of aphasia is one of the main goals of the group.
“We’ve gotten the same sentiment from other members of the group, that feeling of Penn State staying with you no matter where you go,” Sandberg said. “It’s been a really great way to center conversations and get the conversation going during meetings.”
Núñez and Mendez came to Sandberg to help put it all together, but the group was their idea. Their experience of living with aphasia bolsters their leadership as they move the group forward.
Núñez and Mendez said that the group is successful if they can connect with one person to raise awareness and teach them something about aphasia. Their priority is making sure everyone feels like they have a place and room to contribute, and Núñez said they’re always happy to turn new members into Penn State fans for life.
Nearly four years since his stroke occurred in 2020, during a recent breakfast outing, someone called out to Núñez and said, “We are.” He looked at them with a smile on his face and replied, “Penn State.”