June 5, 2012 Features

If I Can Talk, You Can Talk

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.

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."

Living Proof

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."

Bridget Murray Law, managing editor of The ASHA Leader, can be reached at bmurraylaw@asha.org.

cite as: Murray Law, B. (2012, June 05). If I Can Talk, You Can Talk. The ASHA Leader.

References

Coles, J., & Snow, B. (2011). Applying the principles of peer mentorship in persons with aphasia. Topics in Stroke Rehabilitation, 18, 105–111.

Elman, R. J., & Bernstein-Ellis, E. (1999). The efficacy of group communication treatment in adults with chronic aphasia. Journal of Speech, Language, and Hearing Research, 42, 411–419.

Kagan, A., Black, S. E., Duchan F. J., Simmons-Mackie N., & Square, P. (2001) Training volunteers as conversation partners using "Supported Conversation for Adults with Aphasia" (SCA): A controlled trial. Journal of Speech, Language, and Hearing Research, 44, 624–638.

Simmons-Mackie, N., Elman, R., Holland, A., & Damico, J. S. (2007). Management of discourse in group therapy for aphasia. Topics in Language Disorders, 27, 5–23.

Simmons-Mackie, N., & Kagan, A. (1999). Communication strategies used by "good" versus "poor" speaking partners of individuals with aphasia. Aphasiology, 13, 807–820.



Aphasia Center of California Hosts Aphasia Awareness Month

The Aphasia Center of California, the first independent aphasia center in the country, is the host organization of the 2012 National Aphasia Awareness Month in June.

Aphasia Awareness Month is designed to enhance community understanding of aphasia. The annual event is a project of the National Aphasia Association (NAA), a consumer-focused, not-for-profit organization celebrating 25 years as the first national organization dedicated to advocating for persons with aphasia and their families.

This year's theme focuses on aphasia community groups. "Community groups and programs have proven to be an essential component in treatment for people with aphasia," said Ellayne S. Ganzfried, NAA executive director. "They provide a cost-effective, supportive, and motivating environment to practice conversation and improve communication. Groups help empower people to live successfully with aphasia."

NAA encourages community support groups and aphasia centers nationwide to raise public awareness, and has a poster and resource packet available. Other resources on the NAA website include a registry of U.S. groups and programs; a listing of affiliate network members; listings of educational conferences; the Aphasia Bill of Rights; and information on a multicultural task force, aphasia awareness training for emergency responders, and an aphasia-friendly business program. NAA also operates a 24-hour hotline (800-922-4622).



Aphasia Centers Provide Social Work-Outs

Think of them as health clubs focused on social fitness instead of just physical fitness. Aphasia centers offer long-term support for people with aphasia after they've completed an SLP's plan of care. And, over the past two decades, the centers' numbers have grown rapidly along with popularity of the "Life Participation Approach to Aphasia" (LPAA), which holds that conversation and community involvement drive successful, lifelong rehabilitation.

"The intervention is the outcome, so you want people to feel like they're participating in an activity of their choice like regular adults," says Aura Kagan, an originator of LPAA along with Roberta Elman, Nina Simmons-Mackie, and other leaders in the field (see The ASHA Leader, February 15, 2000). "It's different from individual or group therapy, where you hope the treatment will apply in real life. Here you are giving people the opportunity to do what you and I do with our families and friends every day."

Kagan is the director of the first of these centers established in North America—the Aphasia Institute in Toronto—which offers conversation groups and a menu of socially oriented book clubs, exercise groups, and the like. The centers are inspired by studies that point to linguistic and communicative benefits of group communication treatment (e.g., Elman & Bernstein-Ellis, 1999; Simmons-Mackie, Elman, Holland, Damico, 2007).

But for clients to realize that opportunity, proper training of conversation group facilitators is essential, according to research by Kagan and Simmons-Mackie (Kagan, Black, Duchan, Simmons-Mackie, & Square, 2001; Simmons-Mackie & Kagan, 1999). Critical skills include revealing and acknowledging others' conversational competence and ensuring mutual understanding.

"Consider when you have tried to chat with someone who is a really poor conversationalist...that feeling of carrying the conversational load and getting nowhere," Simmons-Mackie says. "This is probably what happens to untrained speaking partners when they encounter someone with aphasia."

With their skills in conversational prompting and cueing, trained SLPs are especially effective at steering conversations with these clients, says Elman, who employs SLPs to lead conversation groups at the Aphasia Center of California (ACC)—which she established as the first U.S. aphasia center in 1996. The center movement has grown rapidly since the 1990s, with upwards of eight large centers and many other smaller programs now operating across North America. (See the constantly updated list on the National Aphasia Association's website.)

As for financial support, many of the centers rely mainly on grants and charitable contributions, along with cut-rate fees for clients. For example, the ACC offers a standard fee schedule that is discounted on a sliding scale for 40% of patients, based on family income. Centers can keep overhead low because all a conversation group really needs is a low-rent space with a table and chairs, Elman says.

"Other than that, the basics include some pads and pencils, some visuals" she says. "And most importantly, each other."

—Bridget Murray Law



  

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