What it’s like to live with aphasia, the condition of Bruce Willis

Bruce Willis, the 67-year-old actor and star of classic action films such as die hard, ends his acting career after being diagnosed with the language disorder aphasia. On March 30, his daughter Rumer, ex-wife Demi Moore and other family members announced the diagnosis on Instagram.

“Our beloved Bruce has had some health issues and was recently diagnosed with aphasia, which is impacting his cognitive abilities,” the family wrote. “As a result, and with great care, Bruce is stepping away from the career that has meant so much to him.”

Here’s what experts say about living with the condition and caring for someone who has it.

Living with aphasia

Symptoms vary, but in general, aphasia affects people’s ability to speak or understand language. Speech, reading, writing and the ability to listen can be affected. It often occurs suddenly after a stroke or other brain injury damages parts of the brain involved in language expression and comprehension. In other cases, known as primary progressive aphasia, the condition slowly worsens over time and patients may develop dementia-like symptoms.

Estimates vary, but between 1 and 2 million Americans have aphasia and nearly 180,000 develop the condition each year. Although it is most common in older people, who are at greater risk for health problems such as stroke, it can affect people at any age. “It could be catastrophic,” said Swathi Kiran, director of Boston University’s Aphasia Research Laboratory. “Not being able to say a full sentence, or say a sentence where the words sound garbled, is extremely frustrating.” It can also make a person feel ashamed or ashamed, “which is why they prefer not to talk more than to say something and be ashamed of it,” Kiran says.

This can lead to social isolation, one of the most emotionally painful possible consequences of aphasia. Patients often know exactly what they want to say, but may not have a way of expressing it, Kiran says. People with aphasia may need to make drastic changes in their lives to cope, such as giving up their careers and finding new ways to communicate with loved ones. “I think the most important thing for families to understand is that even though they don’t seem like themselves, they still are,” said Brenda Rapp, a professor in the department of cognitive science at Johns Hopkins University. “It can be very difficult to navigate those often dramatic changes. They really need a lot of support.”

Can people recover from aphasia?

While there is no cure, speech therapy for sudden onset aphasia may improve patients’ ability to communicate over time. Rapp says that in patients who suddenly develop aphasia, the greatest improvements often occur in the immediate period after the condition first appears, but patients may continue to improve even years later. “I’ve never really worked with someone who, if you work well with them, won’t improve further,” Rapp says.

How well patients recover depends on factors such as the severity of the condition and how it developed. In some patients it may even disappear completely, reportedly after about a week Game of Thrones star Emilia Clarke, who developed the condition after a brain aneurysm. In other cases, however, patients will continue to have symptoms for the rest of their lives. Symptoms in people with primary progressive aphasia, for example, usually continue to get worse, Kiran says.

Kiran says there are also promising clinical trials for aphasia, including treatments that stimulate the brain with electricity. Research suggests that treatment can even slow aphasia in patients with progressive disorders. That’s why it’s critical that people with aphasia and their loved ones don’t give up, Kiran says. “It’s long and hard, but there’s definitely a road to recovery,” she says.

How to support someone with aphasia?

Patience is paramount. Kiran recommends slowing down when talking to someone with aphasia and repeating yourself if necessary to make sure the person understands what you’re saying. She suggests giving them a chance to communicate with you, and encouraging them to draw or use gestures can reveal other ways of communicating that may be easier than speech. “Make sure the person doesn’t feel rushed because if they feel pressured, the aphasia will definitely get worse,” Kiran says.

Consistently communicating with someone with aphasia can be essential to help them improve and avoid social isolation. “Any exercise they get — whether it’s watching TV together or having a cup of coffee and chatting — is therapy for the brain and it definitely positively impacts the results,” Kiran says. “What family members need to understand is that they should support the patient throughout the recovery process and never give up.”

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