What is aphasia, the language disorder suffered by Bruce Willis?

The news shook the world of cinema. The family of famous actor Bruce Willis, known in particular for his role in the Die Hard film series, in which he plays the role of brash cop John McClane, announced on Wednesday that he was ending his acting career. It is a relatively unknown language disorder: aphasia, which can cause a partial or total loss of the ability to express oneself or to understand written and spoken language.

“Aphasia is not a disease, it is a symptom”, details memory specialist neurologist Bernard Croisile. As a result of brain injury, it is a language disorder most often caused by cerebrovascular accident (CVA), but a brain tumor, stroke, head injury, or degenerative diseases, such as Alzheimer’s, can also be the cause of this language disorder. It affects more than 300,000 people in France and more than 30,000 new cases are registered each year. according to the French National Federation of Aphasics.

“Aphasia affects the left hemisphere of the brain that houses the regions of language, expression and oral and written comprehension, thus affecting the patient’s ability to speak, understand, read and write,” continues the neurologist.

“One day you wake up and you can’t speak”

An invisible disability, aphasia interferes with the daily lives of affected people and their families. If they exist to a greater or lesser degree, all the simple things of daily life can become extremely complicated for aphasics: writing, reading, talking, watching television, listening to the radio… It is difficult in these circumstances to imagine Bruce Willis continuing to play the first roles in the cinema.

“One day, you wake up and you can’t speak anymore, the words don’t come out,” says Gérard Jullien. Suffering from aphasia for 25 years after a stroke, this 75-year-old former architect at the head of two aphasic associations lives a permanent struggle against his language disorder. “Unfortunately, we never really heal,” testifies his wife Jacqueline, current vice president of the French National Federation of Aphasics.

People with aphasia can work on their written and spoken language with several hours of speech a week, but even when they master it again, people with aphasia still need time to complete a task because each stage will require effort on their part . , searching for the right word, shaping the word… “It’s a long-term job, which lasts several years,” says Jacqueline. But the most complicated thing is, without a doubt, managing the social exclusion generated by the disorder: “When you no longer know how to speak, read or write normally, how do you make yourself understood, how do you keep in touch? »

The caregiver at the center of the healing process

The caregiver’s role is therefore essential. “I have become half of her, the left hemisphere of her brain,” breathes Jacqueline. Searching the Internet, reading an article, understanding a movie: “Gérard still needs me, he still manages to follow certain talk shows or watch movies, but only the ones he already knew well 25 years ago,” she says. “You need a lot of patience, learning to take your time when talking to them (the aphasic), not interrupting them, not changing the subject all the time…” Jacqueline enumerates.

Aphasia is disabling, but it is not inevitable. “The desire to talk, to meet people, is the most important thing”, insists Gérard Jullien. “Only the will can change things,” says his wife Jacqueline. To help people with aphasia and their families, the French National Federation of Aphasics works for the reintegration and social rehabilitation of patients. Specifically, it offers a series of awareness and training sessions for family caregivers in order to “communicate better” and “live better” throughout the territory.

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