Mark Paulovich squints at the ceiling as he speaks, grabbing at the air as if trying to pull words from it.
"It bugs me. I usually talk a lot, but now...like...after the stroke, it's like I don't talk to people. It's like...God...what's the correct term? Not fear? I can't..." As he flounders, Paulovich, 25, has the sympathy of the six people seated with him at the table, because like him, they also struggle to find the right words. All have aphasia as a result of left-hemisphere strokes, and all are participating in a mentoring program at the Medstar National Rehabilitation Network (NRN) in Washington, D.C., to practice communication skills learned in individual treatment.
Now, instead of shouting out the word Paulovich seeks, they wait for him to find it himself—because that's how he'll get better at it.
Mark Paulovich still struggles to find the right words, but encouragement from mentor Christie Arnold helps him persevere.
"Frustrating!" he calls out, triumphantly. "It's frustrating!"
Christie Arnold, 36, his mentor in the program for six weeks now, smiles and nods her encouragement. The two of them have been talking via Skype for an hour each week, with Arnold, a former accountant, sharing her reintegration experiences since her January 2007 intracranial hemorrhage, and Paulovich venturing back into social interaction after he had a stroke when he was in college just over a year ago.
Their mentoring relationship helps ward off the isolation and depression that sometimes results from aphasia and supports what they're already learning with speech-language pathologists, says Janice Coles, who co-founded the program in 2006 with fellow SLPs Brownrigg Snow and Amy Georgeadis (Coles & Snow, 2011). "The mentors are trained in conversation starters, so this gives them a practice opportunity in the real world," she explains. "It also helps to enhance both the mentor's and mentee's self-confidence and self-worth through communication with a peer."
A Pioneering Program
Involving peers in aphasia treatment is not new in the speech-language pathology world. Treating the disorder in groups has become more popular in the past decades—not only because of its cost-effectiveness, but because research indicates that it helps clients with community re-integration (see sidebar). What is new about the Medstar NRN aphasia program, however, is having peers mentor one another one-on-one.
And the idea for peer mentoring came not from a clinician, but from a client: Thomas Waters, age 77. After a stroke in 2005, Waters made rapid progress in speech-language treatment at NRN but felt that patients were missing out on learning from and supporting one another.
When he suggested the mentoring program as a remedy, Snow, Coles, and Georgeadis researched the possibility and found that NRN already had a similar program for patients with spinal cord injuries. They decided to model the aphasia program after it, with patients meeting once weekly for eight-week sessions. When a new relationship starts, the protégé's SLP sits in on 15 minutes of the first session to help ease communication. "It's a nice introduction and bridging," Snow says. "After that, they're on their own."
Patients meet in person on or off campus—or via phone or the Internet—depending on distance and comfort with technology.
To boost odds of success, the SLPs provide mentoring guidelines and match mentors and protégés according to aphasia type and severity and preferences for meeting online or in person. After every eight weeks, the pairs fill out surveys that the SLPs use to fine-tune the program.
Practice, Practice, Practice
The mentor-protégé meetings don't have to be traditional sit-down conversations. Waters frequently invites protégés to his house for dinners with his family. And another mentor, Wayne Coy, 74, recently took his newest protégé, Budi Santoso, to a Washington Nationals baseball game.
Santoso, 40, had a stroke three years ago and has been working with Coy, a former attorney, for just over a year. They talk on the phone or meet in person at NRH each week.
"The first time I met with Wayne, all I could say was, 'Yes' or 'No,'" Santos says. "Before, when I talk to people, I feel stupid or crazy because I can't say it right. But Wayne told me, 'Okay. We start with simple questions.' So Wayne was making it easier for me."
In the first three months of mentoring, Santoso could use only single words in his conversations with Coy. "Now," Santoso says, "What I got from the program is I feel more confidence about my speech."
In fact, he feels confident enough to go back to work full-time in information technology. But, like Paulovich, he still sometimes battles to find the right word.
"Yesterday I was leaving a voicemail for my boss," Santoso says. "I tried to say I was waiting for the approval form, but I couldn't find the word 'approval.'"
So Coy keeps Santos focused on getting better, perhaps the most important piece of the mentor's role, says Christie Arnold's former mentor Lane Taylor, 70.
"If there's one thing I've learned from mentoring, it's the importance of helping the mentee be optimistic," says Taylor, whose stroke was six years ago. "I tell them not to look back at the stroke and why it happened, but to look forward for the remainder of their life."
True, anyone can encourage a stroke survivor. What differentiates these mentors is that they've endured similar ordeals and are living proof of what recovery work can do, Coy says. He pushed hard for the mentoring program's launch after Waters first suggested it, but on meeting his first protégé, Joe, wasn't prepared for what he encountered.
"I asked him, 'Joe. Where are you from?' And all he could say was, 'K-K-K-K-K-K...' And I said to myself, 'Uh oh, Wayne. You have asked way too much.' The guy had no understanding at all. But after 45 minutes of talking to him I said, 'Joe, if I can talk, you can talk. I've been able to do it, so I'm giving you the hope. That's all I can give you, but it's right from me—my hope.'"
Coy still marvels at what happened next.
"I said, 'What do you want to work on?' And he said, 'My voice.' And I said, 'Joe, you know what you just did? You had a full sentence.' I felt so lucky I was scared."
It was an interaction showing not just how mentors inspire protégés, but how protégés, in turn, bolster mentors' sense of accomplishment, Snow says.
"It does so much good for the mentors, too, for their confidence and communication, to be able to help guide someone else," she says.
The reward comes in seeing a protégé progress more every time you meet, agrees Mark Paulovich's mentor, Christie Arnold. Though Paulovich still struggles for words, one year ago he couldn't talk at all. And six months ago, he could barely get out one word.
"Now I can do complete sentences," Paulovich says. "It's a big deal. Christie helps me a lot because I am more confident now and independent. It's a part of me now. I'm more like my old self, you know."