Editor's Note:
What outcomes do you want for your aphasia and/or apraxia? What quality of life do you have and/or want?
In his video (in this edition), Bill Connors discusses what people with aphasia and apraxia want and don't want.
And, in her 2011 study - "What people with aphasia want: Their goals according to the ICF", Professor Linda Worrall and her colleagues uncovered "what people with aphasia wanted during the rehabilitation process, as well as their concerns and priorities at each stage." [1]
Nine broad categories of goals were identified. In summary, people with aphasia wanted:
> to return to their pre-stroke life and to communicate not only their basic needs but also their opinions;
> information about aphasia, stroke, and available services;
> more speech therapy;
> greater autonomy;
> dignity and respect;
> engagement in social, leisure, and work activities;
> to regain their physical health;
> to help others.
In other words, they want to be NORMAL. That point should guide the rehabilitation process for people with aphasia.
How does a person with aphasia and his/her family and/or caregivers strive for normalcy?
Here are some ways that people with aphasia can begin to feel that they're are in charge after stroke or traumatic brain injury.
Drive your therapy!
One approach is the "Life Participation Approach to Aphasia". The ASHA website [2] describes the "life participation approach to aphasia" (LPAA) has a "consumer-driven service-delivery approach that supports individuals with aphasia and others affected by it in achieving their immediate and longer term life goals".
LPAA focuses on re-engagement in life, beginning with initial assessment and intervention, and continuing, after hospital discharge, until the consumer no longer elects to have communication support. The person with aphasia and family/caregivers are at the center of all decision making. Click here for more information.
The Stroke Comeback Center [3] in Virginia is one aphasia center that uses LPAA.
Darleen Williamson is the founder of the center, now celebrating its 10th year of "helping stroke survivors, people with aphasia, and their families findthe ongoing speech-language treatment they need after their insurance runs out". The center offers a "menu" of 38 groups based around language, motor speech and apraxia, and cognitive needs. The center also has several activity groups-such as community outings, cooking and technology-and has even commandeered the adjacent dance school studio to start fitness groups that have been wildly popular."
Says Darlene:
"Our outcomes show that people with aphasia continue to improve indefinitely, despite what the medical systems will tell you . . . I think they see the recovery as very finite, but we know differently, and I want to help dispel that myth. Every stroke survivor deserves a Stroke Comeback Center."
Practice everyday intensively!
Another Center that uses LPAA but adds a twist is the Austin Speech Labs in Austin, TX [4]. Co-founders Shilpa Shamapant and Shelley Adair developed an intensive "boot camp" system for their clients. [4] The boot camp is eight weeks long, with clients receiving group services for approximately three hours a day, Monday through Friday.
Per the ASHA Leader article:
With such an intense period of treatment, the goal is for the clients to attain some form of communication. Clients can repeat boot camp until this happens-at the cost of $10 per hour. Upon graduation, clients can enroll in further enriched classes like reading, writing, public speaking and cognitive therapy."
Adair says: "When I first started working in the field, we gave everyone a year. If they didn't recover by then, that was it-that was as good as it was going to get. But now we are seeing more people in their 20s, 30s and 40s and they aren't OK with that. They want to continue the process and keep going. Now we can let them do that."
It's been a long, but crucial journey since the center's opening in 2008, but their approach appears to be working. Shamapant talks of one client who started with them in 2009 and was not even speaking. Now he is verbal, employed part-time and living independently. The feeling of seeing him gain such independence, she says, is incredible."
As aphasia research [5] shows, and the co-founders of Austin Speech Labs have found, intensive practice helps PWA. Sadly though, not every PWA can afford the longer Intensive programs, which offer 6 hours daily/5 days for up to 4 to 6 weeks. The cost differential between the Austin Speech Labs group program and the typical Intensive program is not something that is in the range that most PWA can afford, costing up to $14 to $30 thousand per 6 week session. Given the length of time recovery may take, what is needed is an ongoing, intensive program that is affordable.
Engage in Whole Person Recovery!
The Aphasia Center of Innovative Treatment and aphasiatoolbox.com [6 ]strongly believe in what we call Whole Person Recovery for people with aphasia. Components of Whole person recovery include spirituality, companionship, engaging with activities that you like, etc.
Exercise [7] is also a key component of Whole person recovery. It's been shown that brain plasticity increases with exercise, enhancing neurogenesis, blood flow, and neuronal resistance to injury, specifically in the hippocampus. Other benefits - looking good, feeling strong and having a positive attitude, the attributes of self-esteem, are all benefits of a regular exercise regime.
Keep Hope alive!
And, as we have seen from the recent research from Ms. Bright [8], Hope is a potent motivator in Aphasia Recovery.