Losing Language, Finding Community

Mary Borrelli, a 49-year-old former Lynn elementary principal, had a stroke nearly two years ago and was one of six participants in Sargent College’s monthlong intensive aphasia treatment program last summer. Take a closer look at the program in the video above. Photos by Cydney Scott View closed captions on YouTube

Shawn Bridges stood up, closed his eyes, and drew in a deep breath. He held his right arm, frozen at a 90-degree angle, tightly against his barrel chest as it slowly rose and fell. He was ready to tell his story—at least ready to try. Sometimes Bridge’s words come easily, other times they fly away in mid-sentence, and he playfully slapped his shaved head, as if forcing them to stay put.

Opening his eyes, Bridges began. More than two years ago, he was watching late-night TV in his Saugus home. He fell asleep, or thought he fell asleep, and woke up when his son came home after midnight. He tried getting up, but fell to the ground. “Something’s wrong with my body,” the 46-year-old remembered thinking, laughing self-deprecatingly. “I’ll figure it out tomorrow.” Over the course of the night, Bridges had two more strokes while trying to crawl to the bathroom. When his wife found him at 5:30 a.m., he was unable to speak coherently. An ambulance took him to the hospital.

When he was done speaking, Bridges shifted his braced right leg to sit down. Elizabeth Hoover, clinical director of Sargent College’s Aphasia Resource Center and a clinical assistant professor of speech, language, and hearing sciences, thanked him for sharing. His story would no doubt resonate with others in the room.

“It was much clearer when I said it before,” Bridges said. He took another breath and closed his eyes to compose his next thought. “It was a scary time in my life, yes, but it’s filled with pieces that are funny.”

“That breath you take,” said Hoover, “it works.”

The three men and two women listening to Bridges had something in common: they are among the more than one million Americans living with aphasia, a complex communication disorder caused most often by stroke. They were also beginning SAR’s first monthlong intensive aphasia treatment program, undergoing 30 hours each week of therapy to improve their speech, mobility, and nutrition.

Similar intensive poststroke speech therapy programs have been offered for years, but the program launched at Sargent last summer is the first to include nutrition counseling and physical and occupational therapies.

“I think we are so far ahead of the curve compared to what other people are doing,” said Gloria Waters, SAR dean and a professor of speech, language, and hearing sciences.

For decades, aphasia researchers believed the majority of language recovery occurred within the first year after a stroke. Recent studies suggest, however, that the brain can recover language years or even decades afterwards. “There’s been this new push to try to figure out what the ingredients are in that therapy,” Hoover said. “We’re learning that intensity matters across all of the disciplines.”

Intensity certainly describes SAR’s pilot rehabilitation program, which was funded by one of the patients in the group, 60-year-old former banker Stephen Weber, who had a stroke nearly two years ago. Participants met from 9:30 a.m. to 3:30 p.m. five days a week, jamming in hours of speech therapy before nutrition sessions, computer coaching (each participant received an iPad loaded with useful apps), and physical and occupational therapies. Homework was assigned too. The stroke victims read chapters from Tina Fey’s Bossypants on their iPads for the group’s book club, prepared speeches, and were challenged—among other tasks—to walk more on weekends.

On the first day, each person voiced personal goals, and the therapists modeled individual rehabilitation accordingly. Their mixed responses demonstrated the randomness of aphasia, with damage based on the location and strength of the stroke. Some have mild language impairment, some can’t string together basic sentences, and some can’t understand what’s being said to them.

Pat Dennis knew exactly what she wanted to improve. “Verbs, always verbs,” she said. “No verbs.” The 56-year-old has a doctorate in biology and suffered a stroke a decade ago, just two years after she and her husband adopted their daughter from China. Long, lovely sentences surely line up in her head, but only two to three words—mostly nouns—come out.

Mary Borrelli, a 49-year-old former Lynn elementary school principal, had a stroke nearly two years ago. She speaks fluently, but occasionally swaps words (like happy instead of grumpy) when telling stories.

“I don’t know why that is,” she said, throwing her hands in the air.

“That’s aphasia,” Hoover said.

Hoover has worked for 15 years with aphasic patients, who tell her that everything in their lives has become harder. “It takes so much more effort to find the right word to say and organize that into any kind of sentence,” she said. “Even if their language seems pretty functional, the amount of effort it takes to produce that and sustain that over a day is physically and mentally exhausting.”

When aphasic patients speak, their messages may be garbled, incomplete, or not as nuanced as they were before. Unsurprisingly, many choose to remain silent.

“People make judgments about their cognition or their intellect based on their ability to communicate,” Hoover said. “For folks with aphasia, that’s widely acknowledged not to be the case. They are still the same person.”

But many don’t feel like the same person. They no longer work. Their domestic roles have changed. Many can’t participate in sports, drive, or cook. Even grabbing a cup of coffee—with one good hand occupied with a cane—is nearly impossible. All that can be a huge blow to self-esteem.

One week into the program, SAR senior physical therapist Tamara Rork DeAngelis was guiding a balancing exercise. She instructed three participants to put one foot in front of the other along a back wall and turn their head slowly from side to side.

“I didn’t know I could do this,” Bridges said. Suddenly he teetered, repositioned a leg to stop from falling, and chuckled, adding, “This month is really going to kill me.”

The physical challenges of rehabilitation are trying, the mental challenges even harder. DeAngelis knows this, and switched easily between her roles as coach and cheerleader, trying to find activities that would challenge, but not defeat, each participant.

When she started the program, Borrelli could lap the center’s hallway several times. Weeks later, she braved the entire block around Sargent College. Then Weber urged the group to take the stairs.

“Much of that has to do with someone saying, ‘You can do this, you can do it,’” DeAngelis said. So they did, encouraging one another along the way. By month’s end, the group had met and surpassed their weekly walking goals, increased their speed, and improved their balance. “Much of their success,” she said, “and so much of their ability to achieve goals obviously lies within them.”

Down the hall, Nancy Lowenstein, a SAR clinical associate professor of occupational therapy, taught the group members how to compensate for and use limp right arms and curled fingers to complete activities. At their request, they learned how to crack eggs with one hand, prepare simple dishes like chicken salad, and play board games.

“My goal for them is to realize that they can probably do a lot more than they thought they could,” Lowenstein said.

Toward the end of the program, Borrelli and Weber sat in the occupational therapy kitchen to practice opening jars. Borrelli used her left hand to position a jar at the edge of the table, peel open the fingers of her right hand, and place them around the glass. Then she grabbed a jar popper and pried open the top. A hollow “pop” echoed through the room as the vacuum seal broke.

“Oh, gawd!” Borrelli squealed.

Beaming silently, Weber grabbed another jar, positioned it against his chest, and deftly twisted off the top—no tools necessary.

“Oh, you’re showing off,” Lowenstein teased.

The four weeks of combined therapies were groundbreaking. Participants were tested before, during, and after the program on 11 tasks in speech therapy, 4 in physical therapy, and 3 apiece in nutrition and occupational therapy. Their performance in the speech clinic alone proved the program’s success. One person’s scores in the Philadelphia naming test, in which people view and name 175 different pictures, rose from 45 percent recognition to 82 percent. “They all have examples like that where they’ve come up tens of percentage points from pre- and posttesting,” Hoover said. The results indicate the program is worth a rerun next summer, with a couple of tweaks to make it a controlled study for research purposes.

Improved test scores were heartening, but a markedly improved quality of life was exactly that—life-changing. Family and friends said loved ones were motivated again, regained personality, and were self-conscious enough to buy a new wardrobe (and not just the women). Some started conversations with strangers, and even when they stumbled, stuck with it.

“It felt like we as a team, with their help, managed to really make a difference in their lives,” Hoover said. “And that’s the best thing.”

Bridges sat with Hoover on the last day of the program as they reviewed his progress. His naming and comprehension scores had skyrocketed, and his natural rhythm, humor, and sarcasm were returning. Still, she thought there was room for improvement and encouraged him—and all the other participants—to attend the center’s fall aphasia programs and sign up for individual therapy at Sargent College.

“The individual therapy,” Bridges said, pronouncing each syllable precisely, “what’s that going to cost?”

“It can be free,” Hoover said. “I know people.”