Now Patten, 54, struggles to describe what happened after she developed aphasia in 2016 after a sudden cerebral hemorrhage, sometimes pausing to find the right words or letting her husband, Vincent, jump in to take over when it is too difficult . Editing what others say is a challenge, especially in groups of people. And she has to practice reading every day, which is frustrating, because sometimes it only takes her 30 minutes to get through a short article. (But a few years ago, it would have taken her three hours). “I know in my mind all the right words I want to say and the thoughts I have,” Patten said slowly from her Toronto home. “And as soon as I open my mouth, everything goes wrong. It’s so hard to know that I was smart – I’m smart now – it’s just word processing from my mouth. It’s just that feeling of complete irritability.” Christine Patten, right, and her husband Vincent Patten, appear in Italy in June 2016. A month later, Christine thought she was suffering from a migraine, but was actually bleeding in the brain. He now has aphasia, a language disorder. (Christine Patten)

What is aphasia?

There are more than 100,000 Canadians living with aphasia, a communication disorder that affects the ability to understand and express language, according to the Aphasia Institute. Aphasia is usually the result of a stroke, affecting about 30 percent of stroke survivors. But it can also be caused by a tumor in the brain, brain damage and is sometimes an early symptom of dementia. There is a general lack of awareness and understanding about aphasia, with only seven percent of people in Online survey 2020 by the US-based National Aphasia Association able to accurately recognize it as a language disorder. However, as the club notes, aphasia is more common than Parkinson’s disease. But that awareness is changing now that it has been revealed that actor Bruce Willis is retiring from his career after recently diagnosed with aphasia. In an Instagram post Wednesday, his family said Willis, 67, “had some health problems and was recently diagnosed with aphasia, which affects his cognitive abilities.” While some of those with personal experience with aphasia, including Patten, say the news about Willis is really awful, they are also relieved to see the condition make headlines. “I really appreciate the Willis family for their courage in using the term. It’s not a very understandable situation,” said Elyse Shumway, a speech therapist and clinical director at the Aphasia Institute in Toronto.

A “catastrophic” situation

Aphasia can affect all four language-based modes of communication: speaking, writing, understanding spoken language, and reading, Shumway said. The left hemisphere of the brain usually controls the tongue, so aphasia can occur when a stroke or injury occurs in this area, according to the March of Dimes Canada. There are many types of aphasia, explains March of Dimes Canada – such as Broca aphasia (inability to express themselves fluently, poorly spoken), inactivity of speech (loss of ability to perform the movements required to produce speech) and Wernicke aphasia (severely disorganized language that may sound like chatter) – and the exact location of the lesion in the left hemisphere will determine the type. But people with aphasia are usually cognitively intact. Elyse Shumway is a speech therapist and clinical director at the Aphasia Institute in Toronto. (Elyse Shumway)
“Aphasia alone is not a thought disorder. People are still capable, they know what they want to say, they know what they want to convey, but they are prevented from expressing it,” Shumway said. “Some people liken it to your first language, which suddenly becomes a second language.” Symptoms can range from mild – say, someone with a strange difficulty finding words – to profound, someone who can not speak or understand the language at all, said Lori Buchanan, a psychology professor at the University of Windsor who specializes in psycholinguistics. and is also the director of Aphasia Friendly Canada. “It’s arguably the most devastating of any kind of injury that humans can suffer,” Buchanan said. “If you ask people ‘what would it look like if you were paralyzed in an accident?’ People always say that this would be the worst thing ever… but if you ask people who are paralyzed in an accident, they tend to be as happy as the average person. People with aphasia are not happy. It’s really isolating. “

“They are so scared that they might consider them stupid”

It takes a lot of patience to communicate with someone with deep aphasia, Buchanan said. Some people can draw or write a few words. Some may answer yes or no to questions in some way. Sometimes, you can understand what a person is trying to communicate with a change in tone. “The key to communicating with someone with aphasia is to be patient and imaginative and flexible, and most importantly, not to deal with the person you are communicating with as an infant,” Buchanan said. “They are cognitively intact and should be treated that way.” People who have the condition say it’s very frustrating, Shumway said. Not only can they not express themselves, but other people also tend to misunderstand their speech problems as thinking problems. “They are so scared that they might be considered idiots,” Shumway said.

Learning how to communicate

Depending on the cause of the aphasia, some people are recovering, Shumway said. If the condition is due to a brain or brain injury, it depends on how much damage has been done, but the brain can be healed. However, this is not always the case. The National Aphasia Association notes that if the symptoms of aphasia last more than two or three months after a stroke, “complete recovery is unlikely.” There is no medical treatment. But people can still learn how to communicate, and that’s where speech therapy comes in, as well as working with someone with an aphasia family to come up with compensatory strategies, Shumway said. A combination of gestures, mimicking ideas, writing keywords in speech and using photos and drawings can be effective enough to get to a point, he said, noting that aphasia is a family affair due to the team effort required to communicate. “People around them become their communication ramp.” This was the experience for Vincent Patten, 56, who had to learn again how to communicate with his wife. He had to be patient, stop trying to finish or interrupt Christine’s proposals, be fully present in all discussions and learn to let her get her thoughts out – as long as it took. “You always think you’re a good listener, but you only do it when you’re dealing with someone who has aphasia. You think you can be patient, but you probably are not,” Vincent said. “You really have to listen and dedicate your time to letting someone else take their time.”

“I was devastated”

Christine Patten has been suffering from anxiety and depression since what she thought was a migraine, but was actually a cerebral venous thrombosis, left her with aphasia. When he was in rehabilitation, after three weeks in the hospital, he realized that he had survived a cerebral hemorrhage and craniotomy, but something was wrong. A speech therapist asked her to explain the difference between a cat and a dog. He could not. Christine and Vincent Patten in February 2022. Aphasia left Christine suffering from anxiety and depression. (Christine Patten)
“I was devastated,” Patten said. Her husband and children also suffered, Patten said, as they had to watch her cry on the floor because she could not understand the instructions to bake a cake. because her brain wanted to say “June”, but her mouth kept saying “January”. And while her condition has been milder and is improving every year, she needs constant work and practice, Patten said. “You never end up with aphasia.”