How does the diagnosis of Bruce Willis aphasia raise awareness of this condition?

Bruce Willis turns away from acting after being diagnosed with aphasia, a condition that “affects his cognitive abilities” announced his family Recently.

The news marks the beginning of a long journey for Willis and his family. Researchers who study the neurological condition also hope that its occurrence in the public figure will raise awareness of the disorder for the millions of people who suffer from it.

Erin Meyer, director of the Aphasia Network Laboratory at Northeastern University, and assistant professor in the Department of Communication Studies and Disorders at the Buffet School of Health Sciences. photo courtesy

More than two million Americans suffer from aphasia. It is more common than Parkinson’s disease, multiple sclerosis, muscular dystrophy, or Lou Gehrig’s disease. However, most people probably don’t know what it is,” says Erin MeyerD., director of the Aphasia Network Laboratory at Northeastern University, and assistant professor in the Department of Communication Studies and Disorders at the Beauvais College of Health Sciences.

Mayer says that aphasia is an acquired neurological communication disorder that affects people’s ability to understand language, express it, or both.

Indeed, relatively few people are aware of this condition. a Survey 2020 by National Aphasia Associationa nonprofit organization that advocates for people with aphasia and their caregivers, found that more than 86 percent of people in the United States had never heard of the term aphasia.

The disorder is usually caused by a stroke –who happens When blood flow to part of the brain is disrupted, preventing brain tissue from getting oxygen, it can also be the result of a tumor or traumatic brain injury. When damage occurs to the parts of the brain that process language, it can lead to aphasia.

Mayer says aphasia appears differently in different patients, and can range in severity. It may affect a person’s written or spoken language, their understanding of written or spoken language, or both.

Global aphasia is the most severe, and is used to describe patients who “can produce few distinguishable words and understand little or no spoken language,” according to the National Aphasia Association. People with global aphasia cannot read or write.

Aphasia is the least severe. In patients, it manifests itself in a persistent inability to find the words for what they are talking about, especially related verbs and nouns, according to the association.

Mayer says some patients have a neurodegenerative form of aphasia, known as primary progressive aphasia (PPA), that progresses more slowly. In these patients, the parts of the brain responsible for speech and language gradually atrophied.

Photo by Matthew Modono/Northeastern University

The Willis family hasn’t explained why the aphasia (or how severe it is), but the cause is an important factor in how a patient or any patient with the condition looks, says Mayer.

She says the six months following a stroke, for example, is a critical time for speech therapy. And while not everyone with post-stroke aphasia recovers, their outlook is generally good. In contrast, people with primary progressive aphasia have symptoms that gradually get worse, rather than better.

“The goal of treatment in patients with PPA is to preserve skills for as long as possible, rather than restore them in people with post-stroke aphasia,” Mayer says.

Because aphasia affects only speech and language, it is not a life-threatening condition, but it can significantly reduce a person’s quality of life.

“It’s a condition that can be very frustrating even in its mildest form,” Mayer says. Imagine the irritation of having a word on the tip of your tongue amplified for every word you want to say, she suggests. “It can cause people to withdraw in social situations, or to choose not to participate in things they normally enjoy doing because of this barrier in understanding or communicating with language.”

Another way to visualize verbal aphasia, as described by Darlene Williamson, president of the National Aphasia Association, is to imagine that you are in a country whose language you do not speak.

“You can’t understand, read, write, or speak,” she wrote in an email to News@Northeastern. “Nothing has changed intellectually, you cannot simply manipulate language. This is aphasia. As a diagnosis, it only includes language.”

The very nature of the condition itself likely contributes to its relative obscurity in public consciousness, as Mayer and Williamson point out.

“It’s hard to defend yourself if you don’t have the language to do it,” Mayer says.

In this way, Willis’ ad went a long way in highlighting the condition, says Williamson.

“Within the first hour after the public announcement, we had over 30,000 hits on our site,” she wrote. This is unprecedented for us. The requests from the media were overwhelming. As an organization that represents people with aphasia, we are very grateful to the Willis family for being direct and upfront in this announcement.”

In Mayer’s lab, researchers focus on maximizing functional outcomes for people with aphasia as much as possible, she says. In an ongoing project, she and her team are working to map what exactly recovery after a stroke looks like in the brain. Using near-infrared spectroscopy (fNIRS), Mayer and her colleagues seek to understand how language patterns relate to changes in the brain. Doing so will enable researchers to distinguish between beneficial and maladaptive brain patterns of recovery early on, and create treatments that promote beneficial recovery during those few months after a stroke, says Mayer.

She and her colleagues are also preparing to launch a study in May that will test patients’ speech and language abilities in their daily lives rather than in a serene clinical environment like a treatment office.

“We want to understand the daily communication difficulties of people with aphasia, and then be able to address them in real-life situations,” Mayer says.

The year-long study will involve randomly alerting aphasia patients – via smartwatches on their wrist – images that they will recognize out loud. Mayer and her team will use the vocal data to assess whether this type of study, which is commonly used in other research settings, could be applied to aphasia patients as a way to capture their language abilities during their daily lives.

As Mayer and other researchers work tirelessly to understand the condition, Williamson says she hopes more of the public will try to understand people with aphasia in the meantime — a broader understanding that may come as a result of Willis’ public announcement.

“One of the biggest individual desires of individuals with aphasia is to be able to go out into their community—let’s say a coffee shop or the grocery store—and let the employee know they have aphasia and the person will say, ‘Oh yeah, aphasia.'” I know what they are. Let me slow down and give you some extra time to process and speak,” Williamson wrote. “It would change the world for people with aphasia if everyone knew what it was, knew it involved language, not intelligence, and knew the best way to communicate.”

For media inquiriesPlease contact Shannon Narji at s.nargi@northeastern.edu or 617-373-5718.

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