"Starting and Sustaining an Aphasia Rehabilitation Program at a University Clinic: Outcomes, Rewards, and Realities"
J. Brym, N. Mahendra, T. Park, A. Tadokoro
Pictured from left to right: Jessica Brym, Tiffany Park, Ashlyn Tadokoro, Dr. Nidhi Mahendra
In August of 2019, I had the immense honor of presenting at the 31st World Congress of the International Association of Logopedics and Phoniatrics. I was joined by my fellow Spartan Aphasia Research Clinic (SPARC) graduate research assistants and our sponsoring professor, Dr. Mahendra. We set out to identify gaps in care that often occur after the window of therapy has closed for insurance coverage following a stroke. As clinicians, we know all too well that disabilities acquired from stroke can result in life long differences with challenges in obtaining long term support. In our presentation, we identified resources for providing care for persons with aphasia long after their initial stroke event by utilizing university clinics. This method of providing therapy is advantageous for the clients as well as the clinic as it allows for new clinicians to receive training in a safe and welcoming space while providing essential services to a population that has been vastly underserved.
Pictured: Jessica Brym celebrating at the 31st World Congress of the IALP welcome banner
Presenting as a graduate student on an international stage with many talented and experienced clinicians in attendance was one of the greatest honors of my early career. The response from university clinics around the world was that of admiration and inquisition into how we have found success in this niche of care providing. Answering questions, providing insight, and connecting with other clinicians regarding aphasia programs centered around music, reading, and technology showed me the true value and unique nature of SPARC. I feel incredibly proud of the work we have done and feel grateful for the experience to be a part of such a prestigious event. The out pouring of love and support from the seasoned clinicians we met from all walks of life continues to inspire me to this day as I continue on in this rewarding and caring profession.
Life Participation Approach to Aphasia (LPAA)
The method utilized in SPARC is termed the Life Participation Approach to Aphasia. We focus on providing opportunities for persons with aphasia to continue pursing personal interests and activities of their choice while adapting to new challenges and differences in communication. Everyone we work with has different life interests which may stay the same or change dramatically following a stroke event. In SPARC, we utilize social clubs to promote involvement in preferred activities while emphasizing access to accommodate all types of aphasia.
SPARC Programs and Clubs
Book Club
Aphasia may effect a persons ability to read and write, but that does not mean literature is no longer accessible. By utilizing topics of interest, aphasia friendly reading materials, and supported reading strategies for persons with aphasia, books can continue to be a source of joy and intrigue. In 2019, SPARC bookclub featured the story, "A Stitch of Time", written by author Lauren Marks.
At age 27, Lauren survived a brain aneurysm which caused damage leading to a diagnosis of aphasia. Never losing faith in herself and her ability to heal, Lauren utilized writing as a method of expression and connection to give a first hand account of acquiring and living with aphasia. This story became a favorite for the SPARC book club members who utilized aphasia friendly summaries and supported discussions of important themes to engage with the story and express their own experiences as well. In addition to this, we secured an opportunity to zoom with the author herself! Even those who believed they would never read again found excitement and pride in themselves for participating in this experience.
Everyday Technology for Aphasia Care (ETAC)
Technology grants access to information, communication, and recreation. In our new and upcoming ETAC group, we focus on increasing independence in accessing technology to support desired activities. The most successful program we have utilized so far has been, you guessed it, email! SPARC members gained valuable experience in accessing email apps, generating messages, and creating invitations for meet ups. Through individual and group instruction, SPARC clients learned to utilize supports such as word prediction to create clear and effective messages. The true success was realized when these skills generalized outside of the clinic as we noticed our clients planning parties and get togethers all on their own through gmail and google calendar! Community coming together in real time is evidence enough for the effectiveness of this treatment style.
Aphasia Choir
Music and the brain go hand and hand naturally lending itself to be a favorite of our SPARC Aphasia Choir members. Humans communicate a vast array of information through the rhythms, patterns, and melodies in their speech. All of which mirror the elements of music we are drawn to. By utilizing rhythmic activities, emphasizing melodic intonation, and singing popular songs from all generations, the Aphasia Choir offers a unique method for improving communication. It is truly magical to observe a person with aphasia find their words through their favorite songs and express themselves with ease as soon as they hear that first beat drop. Participation in choir causes physical changes in the body such as alignment of heart beat with the rhythm of the music, increase in serotonin with all the smiling faces, and decrease in rates of depression and isolation with the rise and fall of voices in sync and community in motion.
Paving the Way for Future Clinicians
SJSU Laurie College of Education Fall 2019 Learning Showcase
Pictured from left to right: Jessica Brym, Tiffany Park, Ashlyn Tadokoro
Three years of graduate school culminated in one final presentation for myself and my fellow graduate research assistants. From Taipei, Taiwan to San Jose, California, we spoke of our passion for care providing and our methods for increasing participation and access for persons with aphasia. My major take aways from this experience are as follows:
If you go to Taiwan, you must try stinky tofu. Trust me.
People all over the world are unique in culture and language but similar in desire for connection and love.
No matter the barriers to access, there will always be loving and dedicated folks on the ground working to make life better for the individual and the community as a whole.
University Clinics are some of the most awe inspiring places to learn and grow as both clinicians and caring humans.
The power of music, the power of love, and the power of the written language are unmatched in their ability to bring us together in loving connection.
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