What It’s Like Living With Aphasia, Bruce Willis’s Condition

Bruce Willis (67 years old actor, star of action films like “The Killing Machine”) Die HardFollowing being diagnosed as having language disorder, aphasia, actor, has decided to stop acting. Rumer Moore’s daughter, his ex-wife Demi and other relatives announced his diagnosis via Instagram on March 30.

“Our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities,” the family wrote. “As a result of this and with much consideration 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 generally, aphasia affects people’s ability to speak or comprehend language. Aphasia can affect speech, reading, writing and listening ability. This can happen suddenly following a stroke, brain injury or damage to brain areas involved in understanding and language expression. Other cases are known as primary progressive, which can lead to dementia-like symptoms.

Although estimates vary, it is estimated that between 1 million and 2,000,000 Americans suffer from aphasia each year. Although it’s most common in older people, who are at greater risk of health events like strokes, it can affect people at any age. “It can be catastrophic,” says Swathi Kiran, director of the Aphasia Research Laboratory at Boston University. “Not being able to say a full sentence, or saying a sentence where the words sound garbled, is extremely frustrating.” It can also cause a person to feel embarrassed or ashamed, “so they would rather choose not to speak anymore than to say something and feel embarrassed about it,” Kiran says.

This can cause social isolation which is one of the most painful and emotionally damaging consequences of aphasia. Patients often know exactly what they’d like to say but may have no way to express it, says Kiran. To cope with the condition, people with aphasia might need to make major changes in their lives. This could include giving up their jobs and looking for new ways of communicating with their loved ones. “I think the most important thing for families to understand is that despite the fact that they don’t seem like themselves, they still are,” says Brenda Rapp, a professor in the department of cognitive science at Johns Hopkins University. “Trying to navigate those often dramatic changes can be really difficult. They really need a lot of support.”

What are the chances of people regaining their ability to speak?

Although there’s no cure, in sudden onset aphasia, speech therapy can improve patients’ ability to communicate over time. Rapp believes that the best improvements in patients suffering from sudden onset of aphasia are seen in the initial period. But, it is possible for patients to continue their improvement over the years. “I’ve never actually worked with someone who, if you work concertedly with them, won’t continue to improve,” says Rapp.

Patients’ recovery rates depend on the severity of their condition and how it was developed. For some patients, it can even go away completely—like it reportedly did after about a week for Game of ThronesStar Emilia Clarke developed this disorder following a brain aneurysm. Patients will still be able to manage their symptoms in other instances. Kiran states that the symptoms of primary progressive aphasia patients tend to continue getting worse.

Kiran states that there are clinical trials in progress for patients with aphasia. This includes treatments that activate the brain using electricity. Research suggests that treatment can even slow down aphasia in patients with progressive disorders, which is why it’s key that people with aphasia and their loved ones don’t give up, says Kiran. “It’s long and hard, but there’s definitely a road to recovery,” she says.

Supporting someone with Aphasia

The most important thing is patience. Kiran recommends slowing down when speaking with someone with aphasia and repeating yourself, if necessary, to make sure that the person understands what you’re saying. You should give them the opportunity to talk to you. Encouragement to draw and use gestures may help them communicate better than speaking. “Make sure that the person doesn’t feel rushed, because when they feel under pressure, the aphasia definitely gets worse,” says Kiran.

It is important to communicate with people who have aphasia regularly in order to help them improve their lives and prevent isolation. “Every practice they get—whether it’s watching TV together, or drinking a cup of coffee and chatting—is therapy for the brain, and it definitely impacts the outcomes in a positive way,” says Kiran. “What family members have to understand is that they need to support the patient through the recovery process, and never give up.”

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