Guest post by Sara Palmer, PhD
June is National Aphasia Awareness Month—the perfect time to celebrate people living with aphasia and the aphasia programs that help them, from traditional speech language therapy (offered by hospitals, outpatient clinics, and home health agencies) to long-term language recovery programs based in the community. Nearly 2 million Americans are living with aphasia, an acquired communication disorder usually caused by a stroke or brain injury that interferes with expression and understanding of spoken language, writing and reading—but not intelligence. Although recovery from aphasia often continues over many years, insurance coverage for speech therapy services typically runs out after several months. Fortunately, community based aphasia programs offer the next step for continued progress.
The Snyder Center for Aphasia Life Enhancement (SCALE), now a specialty program of The League for People with Disabilities, is one of a small number of free-standing aphasia centers in the country—and the only one in Maryland—that uses the life participation approach to aphasia (LPAA). This model promotes long term recovery of language in people with aphasia who are no longer receiving traditional speech therapy services. It has proven successful in helping people with aphasia achieve their communication goals—and equally important—re-engage in family, social, and community life. SCALE offers individualized treatment, group therapy, and assistive technology to enhance language recovery, while encouraging active participation in group and community activities, boosting self-confidence, and supporting families in coping with aphasia and learning better ways to communicate with their loved ones. Like other LPAA programs, SCALE’s classes and projects are developed based on the interests of participants and their families and are focused on enjoyable and meaningful life activities—hobbies, sports, creativity, socializing, and employment or volunteer work.
Chris Ihle’s Story
After her stroke in 2007, Chris Ihle couldn’t walk or talk; “awful” was the one word she could say, and how she felt most of the time. Though Chris understood what others said to her, she couldn’t express her ideas or have a conversation. After months of rehabilitation therapies, Chris was walking better, but still felt frustrated, anxious, and isolated due to aphasia and her inability to drive or use her right arm. She spent much of her time at home, and was afraid to be left alone.
Since joining SCALE in 2009, Chris has seen dramatic improvements in her ability to speak, read, and write. Just as important is the increase in her motivation, a more positive attitude, growing self-confidence, and greater enjoyment of life. Earl, her husband of forty years, says that before coming to SCALE, Chris wasn’t always enthusiastic about doing therapy—and Chris agrees. “To tell you the truth, I didn’t like it,” she says, “but now I do. I’m trying my darnedest to do it right!” Today, Chris’s attitude toward recovery—and life—is enthusiastic and upbeat. She enjoys going to social events, shopping, traveling with Earl on business or pleasure trips to New York and other cities, and going on long rides in the country to explore new places.
So how has SCALE made a difference? Chris likes the small group classes, community outings to restaurants, movies, and museums, and being able to “choose what I want to do—art, reading, or writing.” “We’re big believers in the LPAA model, because it’s like school,” says Earl. “Chris doesn’t feel like she’s going to a therapy appointment.” As a spouse and caregiver, Earl feels good about taking Chris to a therapeutic program that is friendly, safe, and not part of a hospital. “It’s nice that she can go somewhere three days a week. It’s good for me; I have some extra free time. But the main thing is SCALE is so much better than an institution. Chris is in a great place, and she’s made really great friends.” Once reserved and shy, Chris now reaches out to newcomers at SCALE. “I try to be real friendly to everyone who comes in here; a lot of people are down, and I try to keep them up!”
Chris uses a combination of speaking and writing to communicate, and now enjoys two-way conversations with Earl. “In the beginning,” says Earl, “I knew about 50% of the time what she wanted to say. Now it’s much easier to communicate. She’s really good with paper and pen.” As her language has improved, she’s more comfortable staying alone for short periods of time. Chris’ next goal is learning to use a computer for writing and emails, to expand her connections with friends and family.
Life is certainly different for Chris and Earl than it was before her stroke. There are things they miss doing together—like skiing—and things that Chris can’t do herself—like babysit her granddaughter or drive a car. But Chris and Earl are staunch advocates for people with aphasia, SCALE, and the LPAA because they’ve seen firsthand how language—and life—can keep getting better, even years after a stroke. And that’s something to celebrate!
Sara Palmer, PhD, is an assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine. She is the coauthor, with Jeffrey B. Palmer, MD, of When Your Spouse Has a Stroke: Caring for Your Partner, Yourself, and Your Relationship and Spinal Cord Injury: A Guide for Living, and with Kay Harris Kriegsman, PhD, of Just One of the Kids: Raising a Resilient Family When One of Your Children Has a Physical Disability. She is a long-time member of the Board of Directors of the League for People with Disabilities in Baltimore.
Photographs and video courtesy of SCALE and the League for People with Disabilities.