Local Nonprofit Helps People with Aphasia Become Their Own Best Advocates

In 2005, Judy Crane was working at her desk in the basement of her Millersville home when a sharp pain in her chest jarred her. She couldn’t ignore it. After she called 911 and was taken by ambulance to the local hospital, an ER doctor quickly diagnosed her with an aortic dissection, or a tear of the inner membrane of main blood vessel branching off the heart. It’s as bad as it sounds. Doctors, nurses, and paramedics put her back in the ambulance, bound for the University of Maryland Medical Center.

Over the next eight days, she endured four surgeries, suffered another tear in the aorta even closer to her heart than the first, and was put in a medically induced coma. During the final surgery, when doctors replaced her aortic valve, is when she believes she had a stroke.

For months after “the event,” as she and her family call it, Crane wanted to tell her story, “because I got through it all, which is unusual,” she says, but she couldn’t get the words out. Not because she was scared or didn’t know what to say. But because she couldn’t find them.

She was suffering from something called aphasia, a condition that robs a person of the ability to use their words.

She was 47 years old, a mother of two teenagers, and had spent much of her adult life in medical sales. Before “the event,” she was more than comfortable talking. Now she could barely get through a sentence. Thanks to her husband’s recounting of everything that happened after she got out of the hospital six weeks later, she at least had the full picture. It was the stroke, when the blood flow in her brain was disrupted, that caused the condition that wouldn’t allow her to find the right words to say, even months and years later.

When she first started rehab at Luminis Health Anne Arundel Medical Center and was asked questions by a speech therapist, Crane couldn’t verbalize her kids’ names, her address, or even her own name.

“It was terrifying,” she says now, sitting in the same home, just up the stairs from where the whole ordeal started. “It was the first time I realized I couldn’t say these things. I panicked.”

More than the trauma of the medical emergency or the realization that her workaholic days were behind her, it was the speechlessness that was the most frustrating, confusing, and anxiety-provoking. It’s what made her question what she would do with the rest of her life.

“With all that happened to me,” she says, “the aphasia was the worst.”

If you ever just couldn’t access a word or name at the precise moment you needed it, you know the feeling. Maybe the answer (Jack Kennedy! The Louisiana Purchase! Sarah Michelle Gellar!) pops into your mind a few minutes or hours later, or with the help of Google. Now, imagine experiencing that excruciating delay an unpredictable but constant number of times throughout the day, maybe during every interaction or conversation.

That’s aphasia, or the “expressive” form of it.

“My head was like Swiss cheese,” Crane, now 65, said one recent morning, pointing to the left side of her head. “It’s the most frustrating thing.”

If you’re suffering from aphasia—derived from the word aphatos, Greek for speechless—even if you know what you want to say, the words might not come out of your mouth, or only with a timely clue or encouraging prompt like, “Do you want to try writing it?” But there’s no guarantee that will work, either.

Aphasia can disrupt speaking, reading, and writing—and also understanding. In the latter case, considered “receptive” aphasia, it might seem to others like you’re not listening, when instead what you’re hearing sounds like a foreign language. In another form, some people might think they’re saying one word, but are really saying another. And some others might not even know they have aphasia. Crane’s advice to anyone around someone struggling with the affliction: “Explain things.”

Actor Bruce Willis’ aphasia diagnosis last year put the little-known disorder that affects around two million Americans in the spotlight, though in his case it was more of an early indicator of what his family has since confirmed is a rare form of early-onset dementia. Aphasia most commonly occurs after a stroke, specifically in the left side of the brain that typically deals with language. It can also be associated with brain trauma. A more severe or longer-lasting stroke might make it impossible to regain the language skills, or the aphasia could be mild and last two to three months.

“WITH ALL THAT HAPPENED TO ME,” SHE SAYS, “THE APHASIA WAS THE WORST.”

“Imagine all the things that can go wrong with speech and all of those can happen with aphasia,” says Dr. Barry Gordon, Johns Hopkins University director of the Cognitive Neurology and Neuropsychology Division. “Problems understanding what people are saying, problems expressing yourself, problems finding the right word, problems getting out the right syntax.”

There is not a one-size-fits-all recovery, either. Mild aphasia may resolve on its own, but many people need speech therapy—like repeatedly naming nouns, numbers, or phrases out loud—to rehabilitate their language. For patients experiencing symptoms more than a
few months after a stroke, a complete recovery is unlikely, but improvement is still possible for years afterward. Age and prior health also play a role in the outlook.

No matter the cause or effects, though, while aphasia impairs a person’s ability to communicate, it does not change their intelligence, personality, or memory. Eighteen years after she nearly died and couldn’t speak, Judy Crane is a prime example of that.

On a Tuesday morning this past October, Crane and Lisa Thornburg, an endlessly upbeat veteran speech language pathologist, are leading a Zoom class of about a dozen people. All have some form of aphasia and are trying to work toward what Crane now enjoys: a full and satisfying life where she only occasionally gets hung up on a word or a phrase. As she does each week, as part of her mentoring role with the Snyder Center for Aphasia Life Enhancement (SCALE), a small-staffed Baltimore-based nonprofit operation led by Thornburg,

Crane encourages those in attendance to talk and share. Tell funny stories. Recount how their families are doing. Even if you stumble—you just have to try. “Everything’s still there,” Crane says. “You’re still the same person, you just have a hard time getting your words out. You need a community that can help you, and places like SCALE can do that.”

Over the years, there has been debate in speech therapy circles about the best strategies for treatment. SCALE, a division of the League for People with Disabilities, is one of the few places of its kind in the country that helps people with aphasia by way of immersion tactics that put them in sink-or-swim real-life situations.

Thornburg, who’s been a speech language pathologist for more than 30 years, joined SCALE as its co-director shortly after it was founded by her friend and University of Maryland colleague, Denise McCall, and philanthropists Cherie and Andrew Snyder. (Andrew’s brother, Howard, has aphasia.) At the time it was only the fifth free-standing aphasia center in the U.S. Their first meeting was in a church basement. Today, with a regular staff of three fulltime and other parttime staff, SCALE holds roughly 36 in-person and virtual communication groups four days a week out of a business park off Joppa Road near 695 in Towson.

Approximately 45 people, ranging from ages 26 to 81 and averaging 62 years old, attend the programming, which includes Toastmasters training, art classes, a book club, and Bible study and feels as much like a group of friends getting together as a center that helps with speech rehabilitation. SCALE attendees pay a small fee for classes out of pocket or with medical or veterans’ benefits. The average length of time a person attends SCALE is five years, consistent with the idea that while much recovery of language may typically happen within a few months or up to a year after having a stroke, that’s not a deadline for improvement—despite what some insurance companies may say.

“We try to pick up the slack and say, it’s not that people are done getting better, it’s just that insurance is done paying for it, in a sense,” Thornburg says, “and we provide that link back to community and peer support and continual programming to really just improve people’s quality of life.”

Since opening, they’ve treated more than 300 people and their families. Everyone on October’s Zoom video seems to know each other well. Thornburg is in charge and deftly spurs conversation. Crane, a founding member of SCALE and also a patient advisor on the stroke committee at Anne Arundel Medical Center, where she rehabbed and started a stroke support group, knows how to do the same. She’s been on the SCALE staff since 2017.

Other participants share their stories. Rosalind “Roz” Ellen is another SCALE veteran who has been coming to classes since they started in 2008. She had a stroke back in 1994. Despite her limitations, she clearly has a gregarious personality, but her speech is simply not what it once.

David Kim, who like Crane was a salesperson, has Moyamoya disease—a chronic condition of arteries in the brain that can lead to stroke. In introducing himself, Kim recites the precise date he had his stroke: September 6, 2019. He says, with a few pauses, that he had difficulty speaking out loud at all for a month afterward, but now he’s able to get the words out, often with a smile. “This,” he says of the group, “is a family to me.”

Janet (who chose not to use her last name) has a PhD in nursing from Johns Hopkins. Janet worked in marketing for several banks until her stroke, on August 21, 2020. “The day of the eclipse,” she says, laughing.

October’s Zoom is no ordinary session but rather an advocacy class called “Speak Out Aphasia,” where those who have enjoyed the benefits of SCALE over the years can learn how to get the word out about the programming. They share their perspectives with the pre-med, speech language pathology, and cognitive neuroscience students who intern at SCALE and are encouraged to become spokespeople for stroke and aphasia education. Every conversation also helps them.

“We’re doing this to spread the word,” Crane says, “but it’s also for us. All these presentations we do, this is all practice. With aphasia, you can’t just ‘go to speech’ [verbalizing more and more] and then go, ‘OK, all right, I’m done.’ You have to keep doing things in the community, going to restaurants, things that keep you practicing talking, because when people start shutting down and stop talking, that’s when they get in trouble.”

“YOU CAN IMPROVE…IF YOU WORK HARD AT IT, YOU’RE GOING TO BE ABLE TO COMMUNICATE.”

On a clear, chilly January morning, I visited SCALE’s brick-and-mortar home, where about 20 people with aphasia are split between two small classrooms. I sit in one with a half-dozen students who are experiencing more severe aphasia symptoms. Thornburg asks everyone to introduce themselves. Some say just a few words, others more. Then we play a game designed to get us talking.

Recovery from aphasia tends to be easier for younger people, like Dayquan Hayes, a 26-year-old, who is wearing a San Francisco 49ers winter hat and mask. His aphasia stems from a car accident when he was 18. Over the course of the class, he shares details about his favorite football team (49ers of course), TV show (The Fresh Prince of Bel-Air), and his new dog, a Yorkie puppy named Ted.

Two seats over, at the end of the horseshoe of desks, is Chris Dell. I ask where he’s from. “O-ver-lea,” he says. When asked the age of his four children, he gets hung up. The oldest is 22, but he can’t find the numbers for the next oldest, teenage twin girls.

“Oh God,” he says, frustrated.

“You know it, it’s just hard to say,” Thornburg says. “Do you want to write it?”

He writes “15” on a piece of paper, and also “13” for his youngest.

“So three teenagers at home,” Thornburg says.

Chris sighs loudly, the universal signal for three teenagers at home, and everyone laughs.

“They keep you stressed,” Hayes jokes.

“Yeah!”

A few weeks later, Crane tells me what advice she gives people with more severe aphasia. “You can improve,” she says. “If you work hard at it, you’re going to be able to communicate.”

Motivated to get better and get out of the house while her husband worked, she volunteered at her son’s middle school library returning books. Sometimes, the books ended up in the wrong spots. At the time, she couldn’t count aloud past 10 or get past K when reciting the alphabet.

“I thought, ‘What the heck if I put a couple of them wrong,’” she says. “It was great therapy. I had my little list of the ABCs and I would just do it. I tell people that want to get out and do something, start volunteering somewhere.”

Around then, Crane also started participating in local research studies looking into aphasia, which led her to meet McCall, the SCALE co-founder working in research in the University of Maryland’s department of neurology.

All this while volunteering as a mentor to other stroke survivors at Anne Arundel Medical Center, the same place she left in 2005, crying on her speech therapist’s shoulder, thinking she was the only one who would ever understand her. She wasn’t.

“I started realizing it wasn’t about people doing things for me. It was about me becoming the director of my life. Life isn’t over,” Crane
says, tearing up when asked what she might say to someone hopeless with aphasia. “It’s changed its course, but you’re still on the road. Maybe you’re going a different direction, but it doesn’t mean you’re not going to able to move forward and do something with your life.”

Then she gets up and opens the door to a coat closet. She returns with a blue oval sticker in her hands, with a message she encourages her fellow survivors to always remember and share. Its white letters say: APHASIA / Loss of Language / NOT Intellect.

“This says it all,” she says. “There’s nothing better than people understanding that.”