Finding the Words
Speech therapists at the Stroke Comeback Center in Rockville are helping survivors recover their communication skills—and connect with others facing similar challenges
Williamson’s answer was the center, a nonprofit organization that serves as the next stop for stroke survivors who have exhausted their health insurance coverage for language rehabilitation. The center caters to people of various backgrounds and ages, and operates on a pay-what-you-can model. The fee—$260 for a nine-week session of communication classes—can be adjusted on a sliding scale based on proof of household income. The center also offers yoga and other fitness classes.
The concept took years of planning. “There were about seven to eight families, stroke survivors I’d known for a long time, that I spoke to regularly to solicit their input,” Williamson says. One of them was John Phillips, an astute businessman who has aphasia. Phillips kicked in about half of the $25,000 used to launch the organization, while Williamson and her husband provided the rest. “Then, like many nonprofits, we just jumped into the deep end with both feet, and it was sink or swim.” Williamson says she didn’t take a salary for 10 years after founding the organization in order to keep it afloat.
The original center opened its doors in Oakton, Virginia, in 2005, and initially served about a dozen stroke survivors. Four years later, as demand grew, the center moved to nearby Vienna. The organization launched its Rockville location in March 2018 to better serve Maryland residents and to accommodate the backlog of prospective clients referred by hospitals and clinics. The Rockville office now serves 50 of the center’s 150 “members,” as the clients refer to themselves. Along the way, the clientele at both locations has expanded beyond survivors of stroke to include people with severe head injuries who suffer from aphasia, including combat-wounded veterans. Williamson says the Stroke Comeback Center is the only center of its kind in the D.C. area, and one of a handful in the nation that provides this type of long-term care to people with aphasia.
Stroke occurs when a blood vessel that carries oxygen to the brain is either blocked or bursts, with the latter being more deadly but less common, according to the American Heart Association (AHA). Roughly 795,000 people suffer a stroke each year in the United States, with a stroke occurring about once every 40 seconds, the AHA reports. Stroke ranks as the number five cause of death in the nation—killing more than 140,000 people annually—and a leading cause of serious long-term disability.
While not all stroke victims know what might have led to their stroke, the most common risk factors include high blood pressure, smoking, diabetes and certain heart conditions. The chances of having a stroke more than double every 10 years after age 55, according to the AHA. But a stroke can happen at any age, even among children. Up to 10% of people in the U.S. who experience a stroke are younger than 45, Stanford Health Care reports. Strokes are more common for women than men, and the National Stroke Association reports that African Americans are twice as likely to die from a stroke as Caucasians.
On rare occasions, reports surface of people having a stroke after stretching their necks. This spring, a 28-year-old man from Oklahoma suffered a stroke after trying to relieve his sore neck. According to news reports, the man’s neck popped, damaging an artery.
Williamson says one of the center’s former members experienced a stroke that led to aphasia after stretching her neck in the shampoo sink at the hairdresser.
Williamson’s experience in post-stroke care has deepened her understanding of aphasia. She says a full recovery from aphasia is rare, especially if the symptoms persist for more than three months. But people with chronic aphasia can continue to improve for years and even decades after the brain damage occurs, she says, especially if they receive the appropriate treatment. The need for help isn’t always immediately obvious. Williamson worked with one stroke survivor who left the hospital without consulting a speech therapist. The woman’s aphasia was so mild that she (and her doctor) didn’t notice a problem until she returned to her job and realized that she wasn’t writing, reading or processing information as quickly as she had.
“We repeatedly see cases of people who slipped through the cracks,” says Williamson, who is also president of the board of directors at the National Aphasia Association. The center’s in-house research shows that people with mild cases of aphasia rate their quality of life lower than people with more severe symptoms, most likely because they are expected to act “normal,” Williamson says. “These are people who look fine and function pretty well, so others don’t cut them a break,” which can be frustrating, she adds. “Everyone around you carries on as if you’re fine, and you’re not. They don’t slow down and give you the support you need.”
Other survivors know they need help but have trouble embracing it, Williamson says. One man showed up at the center at his wife’s insistence, but he’d roll his wheelchair around in class so that his back was turned to the group. Another member initially refused to walk into the Vienna center and sat on a bench outside because she was too embarrassed by her speech impairments. “If we can help people like that engage, that’s a success in my book,” Williamson says. “I would never tell a person, ‘We can fix your aphasia.’ We can never promise that it will go away. But we can help people figure out how to live a happy, successful and productive life even though they have aphasia.”
On a Monday afternoon in April, Sandy Foley and Gerry Quinnan Jr. are seated next to each other waiting for the start of their “TV Talk” class. They’re getting used to the reporter who has been showing up lately to observe group sessions. When asked if they’d be willing to have their photos taken at some point, Foley says, “Oh my, OK. That’s fine with me, but when?” Quinnan replies “yes” in a barely audible voice. Then, with a grin on his face, he starts primping, smoothing his hair with his hands on one side of his head, then the other. Foley laughs. “You’re funny,” she says. “Very funny.”
Foley, 61, and Quinnan, 71, each suffered a stroke in June 2018 and met at the center. But just as no two people are alike before aphasia, they aren’t the same afterward either, which is most evident in the TV Talk class. Unlike most of the center’s other classes, which group people of similar communication levels, TV Talk is open to everyone.