Aphasia is a word with which not many people are familiar. It names a condition suffered by those who have lost their ability to use words to communicate, either partially or completely, following a stroke or other serious brain injury.
In spite of this low level of public awareness, aphasia is not rare – it affects about 2 million adults nationwide, roughly two-thirds of whom are over age 65. For a number of reasons, strokes also are becoming more common among people younger than 55, so aphasia is increasingly common among working adults as well.
According to the National Aphasia Association, between 25 and 40 percent of stroke victims experience a significant loss of language and communication skills. This is due to damage in brain networks responsible for connecting thoughts with words, or in those that control the muscles needed for speech.Treatment for aphasia traditionally has focused on speech therapy designed to rebuild those damaged networks to the greatest extent possible. About six months to a year following a stroke, though, many patients’ progress tends to grind to a halt just at the point when insurance benefits for therapy run out, leaving them with few options.
Fontbonne University’s Eardley Family Clinic for Speech, Language and Hearing has been providing speech and language therapy services to stroke patients in the St. Louis region for more than 50 years. Over the past four years, the clinic has significantly expanded its services for area residents with aphasia, adding therapy groups that are helping patients overcome not only the language barriers put up by aphasia, but also the social ones.
Since late 2016, the Eardley Family Clinic has been a free clinic – meaning the leading-edge therapies it offers are provided at no cost to patients. This year, its clinicians and patients also are teaming up to raise community awareness about this little-known, yet life-altering disability.
‘Something magical happens’
This summer, the Eardley Family Clinic conducted its fourth annual Aphasia Boot Camp. The intensive six-week program includes a small number of participants – usually about six – each of whom is assigned to a Fontbonne graduate student clinician. The group meets for four hours per day, four days a week. Half of that time is spent in individual, one-on-one speech therapy and half is spent working in a group with the other aphasia patients.
It is in the group setting – where patients find mutual acceptance, encouragement and friendship – that amazing progress can happen, according to Amanda Eaton, Ph.D., co-founder/director of the Aphasia Boot Camp and assistant professor of speech-language pathology at Fontbonne.
“I can’t stress enough how powerful that social support is,” Eaton said. “It helps people get back into the community, specifically the aphasia community. Something kind of magical happens when they get together.
“Typically in our groups we see people who are several years post-stroke, long past the window of maximum recovery time; however, they are continuing to make significant gains not only in quality of life and confidence but also huge leaps as far as standardized measures. That’s really exciting and encouraging, because it could over time change the approach to therapy as far as how the brain heals, and what’s actually possible.”
An additional small group therapy program called GRACE [Group Rehabilitation for Aphasia and Communication Effectiveness] has grown out of the Eardley Clinic’s boot camp. While the boot camp meets only in the summer months, GRACE groups are offered year-round, and have recently expanded to include three groups that meet twice a week for two hours at a time during spring, summer and fall.
These groups are unique in the nation, Eaton said. While other intensive therapy programs certainly exist, there are no others that offer similar one-to-one intensive therapy in group sessions. And while all of Fontbonne’s programs are free of charge, other programs around the U.S. may cost upwards of $10,000 or $20,000, sometimes more than $30,000, all of which must be paid out-of-pocket by patients, she added.
Making aphasia visible
Social isolation and depression are serious risks for people with aphasia. The struggle to regain the ability to communicate can be profoundly lonely and frustrating. It also can be extremely frightening to interact with others in the community because, unlike other physical disabilities, aphasia is invisible.
“If you don’t know what aphasia is, you don’t know what the problem might be when you hear a patient speak for the first time,” Eaton said. “It might be mistaken for a mental disability, or even insanity. When people understand better what aphasia is, it makes communication so much easier.”
Discussions in the clinic’s GRACE groups about how to make those daily interactions easier gave rise to a new community awareness campaign, “What’s Aphasia?” that was launched earlier this year. Accompanied by Fontbonne graduate student clinicians, a panel of people with aphasia make presentations to various groups upon request, to tell their stories and answer questions.
The clinic also sponsors an Aphasia Bridge Chorus, a singing group for aphasia patients that practices regularly and has performed at Fontbonne events. The group recently sang at the university’s graduate hooding ceremonies and “there wasn’t a dry eye in the audience,” Eaton said.
A new life’s work
Randy Miller was 51 and a successful sales and IT professional when he suddenly suffered a massive stroke that basically took away his ability to speak.
Now 55, Miller first became involved in the clinic’s boot camp program in 2015. With the constant support from his wife, Rose, he now participates in the clinic’s GRACE program, “What’s Aphasia?” community presentations, Aphasia Bridge Chorus and other groups. Backed by Fontbonne, he was chosen earlier this year as Missouri’s Speech Language and Hearing state ambassador for people with communication disorders.
Rose said her husband’s interaction with both the therapists and other patients at the clinic is invaluable. Immediately following the stroke, he could say about 10 random words; today, he can speak in sentences and is relearning grammar and writing skills.“It lets him know he’s not alone. He’s made new friends there – they play cards, go out to dinner. They push each other, helping and encouraging one another,” Rose said.
“I don’t know what I’d do without them. I know that,” Randy added.
The couple explained that prior to his stroke, Randy had traveled extensively for his job, making speeches about technology topics to companies all over the U.S.
The speeches he gives today are far different. “Now I talk about aphasia,” he said.
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For area residents interested in becoming involved in the Eardley Family Clinic’s aphasia therapy programs, an application can be found on the Fontbonne University website [fontbonne.edu]. Applications will be followed by an evaluation to determine whether a patient is a better fit for group or individual therapy. Information also is available by phone at (314) 889-1407 or via email at firstname.lastname@example.org.