Turning the page, finding a voice

Former nurses with aphasia are guiding others with the disease.

Gloria DiDonna, who was diagnosed with aphasia, writes out a word she struggles to verbally communicate and shares it with nurse and volunteer Madeleine DiLeonardo. | Kara Milstein TTN
Gloria DiDonna, who was diagnosed with aphasia, writes out a word she struggles to verbally communicate and shares it with nurse and volunteer Madeleine DiLeonardo. | Kara Milstein TTN

After suffering a stroke in June 2007, Yvonne Samuels spent every day sitting in her home – crying because she was unable to live her life the way she wanted.

Diagnosed with aphasia, a communication disorder that stems from brain trauma or injury, Samuels, 67, said years passed before she regained her positive mentality.

“I said to myself, ‘I can do this. I can do it,’” Samuels said of her recovery process. “I go out – I have to. You have to.”

Though her life is different in many ways from the years before her stroke, Samuels and other Philadelphians living with aphasia said they have found new hope in a program started by the College of Communication Sciences and Disorders and the College of Public Health.

Both Samuels and Gloria DiDonna, a co-author of the book  who was diagnosed with aphasia after suffering a stroke in 2008, have been working with Dr. Rena Krakow, an associate professor and director of the undergraduate program in the Department of Communication Sciences and Disorders, other department members and students, to publish an informative book for people living with the disorder and their families.

Last semester, Samuels, DiDonna and other members of the newly established Philadelphia Aphasia Community at Temple partnered with undergraduate students for a series of programs designed to help people with aphasia build communication skills and for students to gain first-hand experience, including a book-writing exercise.

“You kind of see what you’re learning about,” said Olivia Scanlon, a junior speech, language and hearing sciences major. “You get to see what you will eventually be doing more, as a speech pathologist. You learn about it in school, but now you get to see what it really looks like.”

Scanlon and senior communication and hearing sciences major Brianna Fonti have been consulting with Samuels and DiDonna, listening to their experiences with aphasia and gathering research to eventually compile into the book.

The book will cover topics like behaviors that put people at a higher risk for stroke, which Fonti said could be extremely valuable for people that are unaware of the signs of a stroke, and lifestyle changes to contribute to better heart health.

Prior to their diagnoses, both DiDonna and Samuels worked as nurses; Scanlon said the women have been extremely valuable resources while working on the book because of their experiences. They are able to use their knowledge that has been put on the backburner since being diagnosed with aphasia.

“[Being nurses] was a really big part of their identity,” Scanlon said. “They’re teaching us things, and we’re helping them write the book, so I think they feel really good about it.”

Francine Kohen, a clinical instructor and supervisor in the Department of Communication Sciences and Disorders and collaborator on the book, said that having the opportunity to combine their experiences with aphasia and the skills they have is of great benefit to Samuels and DiDonna.

“It actually gives them back their identity a little bit,” Kohen said. “It really depressed [DiDonna and Samuels], you know, they have all this knowledge and [they] just can’t use it … but all of a sudden they have a cause again.”

Kohen said it is not uncommon for people with aphasia to feel isolated and depressed and lose friends who may not be able to deal with the change.

Having a sense of purpose and ability to interact with others, especially young people, is key in the rehabilitation process, DiDonna and Samuels said.

Beth Levine, the director of clinical education and clinical services, said that one of the most important parts of the program is a focus on what DiDonna and Samuels can do and have to offer, which has proved successful in their recovery process.

“Traditionally, individual therapy focuses on what we call, ‘deficit based,’ so what can’t the person do and we’re supposed to go in and fix it,” Levine said. “What we do here is we’re really looking at what can they do – they’re nurses.”

“They’re still young, smart women who have knowledge,” she added. “Instead of talking about what they can’t do, they get to talk about what they can do and what they know, and because of it, we’ve seen both [DiDonna and Samuels] with so much more language and so much more communication than we’ve ever seen them.”

For DiDonna and Samuels, authoring the book has not only been an important communication building tool, but has become a valuable social experience, as they get to interact with one another in a comfortable setting.

“Both [DiDonna and Samuels] loved their work [as nurses], which was emphasized in the book” Krakow said. “It was clear that they still had much to contribute from their knowledge and experiences as professionals, with the right opportunity.”

Alexa Bricker can be reached at abricke1@temple.edu.

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