‘Like Bruce Willis, I’ve got aphasia – it doesn’t have to mean the end’

A third of the 1.3 million stroke survivors in the UK have aphasia, says Juliet Bouverie, chief executive of the Stroke Association. However, it is important to remember, says Bouverie, “it doesn’t affect people’s intelligence.”

She adds: “We are saddened to hear about Bruce Willis’s aphasia diagnosis. Although aphasia affects everybody differently, it can have an enormous impact on someone’s daily life.”

According to the Aphasia Alliance, a coalition of key organisations from all over the UK that work in the field of aphasia: “In its severest form, the person with aphasia may have very little, or no, speech and find it difficult to follow a simple conversation. Aphasia, also known as dysphasia, can be very mild and sometimes only affect one form of communication, such as reading or speaking, but even mild aphasia leads to extreme frustration.” It’s also a hidden disability, because it has no other visible signs, and impacts on friends and family as well as the person directly affected.

Whatever the cause, speech and language therapy is one of the main treatments for aphasia, and it begins as soon as a diagnosis is made. McLean started having speech therapy in hospital just days after his stroke, and carried on having two hour-long sessions every week for six months after he returned home. “It made a huge difference to me and gave me my confidence back,” he says.

Willis will almost certainly be having speech and language therapy himself to treat the condition. Pictures from film sets also seem to suggest he may have been wearing an earpiece to help him with his lines. Professor Jenny Crinion, speech and language therapist leading the aphasia service at the National Hospital of Neurology and Neurosurgery, University College London Hospitals (UCLH), says that there are different types of aphasia, each depending upon the brain area that is affected, and the role that area plays in language production. 

“While all of them affect a person’s ability to communicate,” says Crinion, “one type of aphasia, termed primary progressive aphasia (PPA), also affects cognitive abilities.” 

Another type is Broca’s aphasia, which occurs when an area in the frontal lobe of the left hemisphere of the brain is damaged or destroyed. It is next to the region that controls the movement of facial muscles, tongue, jaw and throat and leads to difficulty speaking. Sufferers may still be able to read and understand spoken language.

Wernicke’s aphasia occurs when a region in the left temporal lobe is affected. An individual can make speech sounds, but they are meaningless because they do not make any sense to those hearing them.

Crinion, who is also a professor of cognitive neurology at UCLH conducting research into aphasia, says she is saddened to learn about Willis’s diagnosis but believes he should do well with the right support. 

“l see individuals from across the UK living with aphasia and their families and understand the impact of this diagnosis,” she says. “While we are not aware of Willis’s specific aphasia diagnosis, we know strong family support and expert professional services, including speech and language therapy and cognitive neurology, have a positive impact on living successfully with it.”

According to Professor Alexander Leff, speech and language therapy is the “gold standard” which is effective in the vast majority of aphasia patients, as long as people get enough help. “Ideally, people need about 100 hours of speech and language therapy,” says Leff, “to get a significant gain in ability. Unfortunately, many people with aphasia may get far less than this – just six to eight hours after they leave hospital – so the results are not so good.”

Profs Crinion and Leff run an intensive, comprehensive aphasia programme  at UCLH. People with aphasia join the four-week programme, which brings patients in four days a week from 9am to 5pm, and this has had some excellent results. “We are just one hospital so we can only do so much but this could be a model for others,” says Leff.

Behavioural therapy works because it takes advantage of the residual speech and language networks in the brain which are not destroyed or damaged. 

“In general, the left hemisphere or side of the brain is responsible for language and speech but there are residual language skills in many other parts of the brain,” he says, adding: “No matter how bad the brain damage is, I have never seen a patient whose injury has wiped out all of their language skills.

“It’s possible to boost the brain’s residual language networks, although the results do depend on the scale and extent of the damage in the first place as well as how much practice you do. You may be able to restore speech but not reading and writing skills so much. When practising reading, that may improve but will likely not affect your speaking skills.”

There are currently few other treatments available. Some drug therapies have been trialled, with moderate effects, but only in conjunction with behavioural therapy including speech and language therapy, according to Leff. “You can’t sit in a darkened room on your own and take a drug and expect to regain your speech. It is much more complicated than that; you must interact with others, as that’s what language is for.”

Many sufferers need psychological support as well as speech and language therapy. 

The Stroke Association encourages more public awareness. “It is important for the public to be aware of what aphasia is,” says Bouverie, “the things to look out for and learn what strategies might help those with aphasia living in their community.”

Looking back, McLean says losing his speech was “devastating” and made him feel completely isolated. “I remember when I woke up in hospital and I couldn’t speak at all and my right-hand side was paralysed. I still had the use of my left hand so could point to things, but even asking for a glass of water was impossible. Luckily, my wife was brilliant and she learned really quickly how to adapt to my non-verbal signs. She came up with letter cards I could use and we worked things out that way but the whole experience threw me off balance.”

McLean also had to give up acting and his career as a drama teacher following his aphasia diagnosis, because he couldn’t read or write. “I had to leave behind a way of life which was very difficult and painful for me,” he says.

Today, as a hands-on dad to Lorcan while Suzanne works full time as the head of a charity in Belfast, he has regained his confidence and purpose in life. “I lost something and I know I can never go back to how I was before but I gained something too. Being a full-time dad is really fulfilling and it’s good for me and Lorcan. We are learning language together and it’s made a huge difference to my recovery.”

He is convinced that Willis, too, will emerge stronger from this experience. “I really looked up to him as an actor and he’s going to have to leave that behind. Luckily, Bruce is a really strong guy and I’m sure he will looking at aphasia as just another challenge. 

“He’s stepping back from acting, but that doesn’t mean he isn’t going to have a full and active life, with the right support. I’m sure he’s looking forward to the next chapter.”

For more information about stroke-related aphasia, go to www.stroke.org.uk/what-is-aphasia  

For more general information about aphasia, go to www.aphasiaalliance.org

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