Making Life Bigger than Aphasia
At some point during their recovery, stroke survivors and caregivers realize that the world doesn’t reshape itself to fit their needs. Aphasia may have to be worked around, despite the best efforts of survivors and speech-language pathologists.
At some point during their recovery, stroke survivors and caregivers realize that life goes on and they have to fit into it. The world doesn’t reshape itself to fit their needs. Aphasia is a deficit that may have to be worked around, despite the best efforts of survivors and speech-language pathologists.
Conventional speech-language therapy focuses on improving language by practicing saying words and forming sentences, or trying to. That approach has served many survivors with aphasia. However, insurance reimbursement for speech-language therapy is limited to about two months, which is not enough. Even after therapy, some people with aphasia don’t fully recover language skills.
Nina Simmons-Mackie, Ph.D.
“Aphasia is often a ‘chronic’ disability in which language can improve, but does not recover,” said Nina Simmons-Mackie, Ph.D., professor of Communication Sciences & Disorders at Southeastern Louisiana University in Hammond. “This leaves the person with aphasia with a chronic communication disability. Chronic aphasia can make it difficult or impossible to participate in important daily life situations.” For many people with aphasia and their families, aphasia dominates their daily existence and becomes a barrier to getting on with life.
To improve the lives of survivors with aphasia, some speech-language pathologists have developed the “Life Participation Approach to Aphasia” (LPAA). “This form of service delivery differs substantially from more traditional aphasia management,” Simmons-Mackie said.
These programs emphasize group activities that allow survivors with aphasia to communicate and share their experiences with each other. The groups may be book clubs, exercise and yoga classes or theatre programs that are more enjoyable and entertaining than traditional speech therapy.
“The goal is to build confidence, skills and opportunities to get on with life in spite of aphasia, and at the same time practice communicating with other people,” Simmons-Mackie said. The Aphasia Institute in Toronto refers to this as “making Life bigger than Aphasia.”
A group of women who instituted LPAA programming at 13 centers around the country last year formed an umbrella organization called AphasiaAccess to provide continued support for those with aphasia. They collaborate to streamline the post-rehabilitation, long-term treatment process. (For a list of the centers visit StrokeAssociation.org/aphasia.) Although each center offers a different mix of programs, all emphasize interaction and participation. The AphasiaAccess website (AphasiaAccess.org) will be launched this fall.
Darlene Williamson, a member of AphasiaAccess, is the Executive Director of the Stroke Comeback Center in Vienna, Virginia, which offers more than three dozen groups each week. “Our groups focus on the four primary modalities of listening, speaking, reading and writing,” Williamson said. “We also have cognitively based groups, motor speech groups and technology groups.” They also have groups with a fitness component that work with balance, mobility, eye-hand coordination, and a yoga class. Because the center is located in town, members can practice their communications skills at nearby restaurants, shops or the bank. “Members of our center determine their goals and their focus and can create a customized rehabilitation program from among the groups we offer,” Williamson said.
“The goal of LPAA is to make life the focus and minimize the influence of aphasia,” Simmons-Mackie said. “Aphasia doesn’t go away, but life engagement becomes the focus.”
Research indicates that those who live successfully with aphasia engage in meaningful activities and interact with other people, coping positively with their disorder. “LPAA aims to focus explicitly on these goals, rather than assuming that improved language processing will automatically result in improved participation in life,” Simmons-Mackie said.
A key principle of LPAA is to have participants set an explicit goal of improving their participation in life. Another key element of LPAA is changing the environment around the person with aphasia, not only changing how the person with aphasia communicates. Simmons-Mackie likens it to trying to communicate in a foreign country without speaking the language. Native speakers can interact successfully by using drawings or gestures, being patient and slowing down. “In LPAA the emotional consequences of aphasia are considered as important as the linguistic consequences,” Simmons-Mackie said. In other words, how someone feels about themselves and about communication is important for re-engaging in life.
Another key principle of LPAA is that aphasia intervention should occur any time the person needs services, not simply for two or three months after stroke. Changing life situations may affect communication needs, so centers that are part of AphasiaAccess are open at any time to people with aphasia and their families.
For Williamson at the Stroke Comeback Center, this approach involves the survivor’s entire support system continuing their support for as long as the person wants assistance, empowering the survivor to establish real-life goals that lead to re-engagement in their community, workplace and family.
Survivors set individual goals to measure their success. “Progress is not necessarily measured in particular speech changes,” Williamson said, although they track such changes when they occur. “We use the term ‘communicate,’ rather than speak or verbalize. Progress is determined by an individual being able to communicate with family, friends, and the community in general.”
AphasiaAccess speech therapists keep cost in mind when formulating their programs. Group programs cost less than individual therapy. Several of the centers are nonprofits or are funded by philanthropies. Each center charges tuition, but keep their prices affordable and often offer scholarships to those who cannot afford it. They also do fundraising to lower program costs.
“Our members realized that the services they were offering not only represented a paradigm shift in the management of aphasia, but they were ‘life changing’ for people with aphasia,” Simmons-Mackie said. “The traditional healthcare system did not provide what was needed and often had difficulty even accommodating this type of programming. Service providers and researchers wanted to share their vision and their growing knowledge base and advocate for this form of service for people with aphasia and their families. Also we wanted to learn from each other. Prior to our founding there were no organizations that made it easy for LPAA providers to get information or share their own experiences.”
Lisa Reynolds of Pecos, Texas, was 45 when she had a stroke in December 2003 that partially paralyzed her right side, impaired her vision and left her with expressive aphasia. She had traditional speech therapy for six months and then became a member of the Aphasia Center of West Texas (ACWT) in Midland. She attended programs five days a week for months, which required recruiting a pool of drivers to make the 200 mile round trip with her because she cannot drive.
Speaking with the mother of four, it is clear she still has aphasia, but it is equally clear she has confidence and enthusiasm for her life. She names off the classes she has taken – “computer lab, cooking, exercise, Bible study, current events where we talk about things over coffee, playing board games.” She has learned to write with her left hand and to maximize communication by asking others to ask her yes-no questions. Says her husband Randy, an attorney: “She is more confident, more independent. She is willing to talk to people, to go shopping.” He is obviously proud of his wife’s accomplishments.
When we talked, Lisa was returning to ACWT the next week. Even after 10 years of attending, she couldn’t wait: “I’m excited to see my friends but also getting something done. It gives so much more than speech improvement. It’s the overall balance that this brings into your life. It has so much to offer; it’s focused on speech but not just speaking.”
“A stroke turns entire families upside down,” Randy adds. “ACWT does a great job addressing issues that affect the survivor directly, but it also provides assistance to the survivor by providing much needed resources to the survivor’s caregivers and family.”
Thoughts of a Founding Mother
Kathryn Shelley | Founder; Marketing & Development Director
Aphasia Center of West Texas
Everything about my father’s identity, how he saw himself and how others viewed him, came to a crashing halt following his stroke and aphasia. It would be months of heartache, frustration and hopelessness before I heard Aura Kagan, Ph.D., explain the Life Participation Approach to Aphasia. I felt my whole body relax, knowing I had finally found a plausible, on-going and life-affirming model of service for my dad and others like him. Now, I’ve had the honor of watching hundreds of survivors enter the doors of the Aphasia Center of West Texas. Over and over, I’ve witnessed how they grab the lifeline of friendship, communication strategies and empowerment the Life Participation Approach provides.
I jumped at the chance to be a “founding mother” of the AphasiaAccess network because I want the LPAA model of service to spring up in cities across North America. From the moment someone enters a hospital on a gurney to ordering coffee at the local coffee shop, I want people with aphasia to find healthcare professionals, business owners and community leaders who know how to make life accessible again. AphasiaAccess will be the go-to resource to learn exactly how to do that.
When talking to Bob Mayer, 55, of Tenafly, New Jersey, it is obvious he has aphasia, but what he clearly doesn’t have is fear or reticence. He may search for words, but he doesn’t search for the confidence to speak. After an ischemic stroke at age 40, he says “the symbol system broke down.” Bob has been coming to the Adler Aphasia Center (AAC) in Maywood, New Jersey, four days a week for 10 years.
In that time, he has participated in all the center’s four dozen classes, which change each semester as members ask for new things. “My favorite is drama club. We ad lib a lot of lines,” he said laughing. “We can’t remember everything.” The drama group produces a condensed version of a Broadway musical each August.
Bob participates in a jewelry-making group called Something Special. Each Friday, members sell their creations at retirement center gift shops. Their jewelry sales in four years have raised more than $150,000 for AAC. “Plus it (working in the gift shops) builds self-esteem and teaches others about aphasia,” Bob said. “People know stroke, but they don’t know about aphasia.”
AAC members educate first responders and medical residents in their community about aphasia and how to interact with people who have it.
“I’ve come here for 10 years and people are down at first but their whole attitude changes because they are talking and interacting, even if just with gestures. Amazing the changes that you see. I pay a small fee to come here and it’s well worth the money. Being part of AAC is where I want to come for recovery. It’s happy, lots of hope and help here.”
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