Before what she and her husband call their “bad day,” Christine Patten was a global law firm director and communications expert.
Now Patten, 54, struggles to describe what happened after she developed aphasia in 2016 following a sudden brain hemorrhage, sometimes taking long breaks to find the right words, or leaving her husband , Vincent, stepping in to take over when things get too difficult. .
Processing 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 still takes her 30 minutes to read a short article. (But a few years ago, it would have taken him three hours).
“I know in my brain all the right words I want to say and the thoughts I have,” Patten said slowly from his home in Toronto.
“And as soon as I open my mouth, everything goes wrong. It’s so hard to know that I was smart before – I’m smart now – it’s just the processing of the words that come out of my mouth. It’s just this feeling of being complete frustration.”
What is aphasia?
According to Aphasia Institute. Aphasia is usually the result of a stroke, affecting about 30% of stroke survivors. But it can also be caused by a brain tumor, brain injury, 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 a 2020 online survey by the US-based National Aphasia Association able to identify it accurately as a language disorder. Yet, as the association notes, aphasia is more common than Parkinson’s disease.
But that awareness is changing now that actor Bruce Willis has been revealed to be walking away from his career after recently diagnosed with aphasia. In an Instagram post on Wednesday, his family said Willis, 67, “has been experiencing health issues and was recently diagnosed with aphasia, which is impacting his cognitive abilities.”
While some of those with personal experience with aphasia, including Patten, say the news about Willis is truly horrifying, they are also relieved to see the condition making headlines.
“I very much appreciate the Willis family for their courage, coming out and using the term. It’s not a very well understood condition,” said Elyse Shumway, speech pathologist and clinical manager at the Aphasia Institute. of Toronto.
A “devastating” condition
Aphasia can impair all four modalities of language-based communication: speaking, writing, understanding spoken language and reading, Shumway said.
The left hemisphere of the brain typically controls language, so aphasia can occur when a stroke or injury occurs in this region, according to March of Dimes Canada. There are many types of aphasia, explains March of Dimes Canada – such as Broca’s aphasia (the inability to express language fluently, with poor speech), speech apraxia (the loss of the ability to perform the movements necessary for the production of speech) and Wernicke’s aphasia. aphasia (very disorganized speech that may sound like babbling) – and the exact location of the damage in the left hemisphere will determine the type.
But people with aphasia are usually still cognitively intact.
“Aphasia in itself 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 compare it to your first language suddenly becoming a second language.”
Symptoms can range from mild — say, someone having difficulty finding words — to profound, someone who can’t speak or understand language at all, said Lori Buchanan, professor of psychology at the University of Windsor specializing in psycholinguistics, and is also director of Aphasia Friendly Canada.
“It’s arguably the most devastating of all injuries people can sustain,” Buchanan said.
“If you ask people ‘how would you feel if you were paralyzed in an accident?’ people always say it would be the worst thing ever… but if you ask people who have been paralyzed in an accident, they tend to be as happy as the average person. People with aphasia are not happy. It really is insulating.
“They are so afraid of being considered stupid”
It takes a lot of patience to communicate with someone with profound aphasia, Buchanan said. Some people are able to draw or write a few words. Some people can somehow answer yes or no questions. Sometimes you can tell what a person is trying to communicate by a change in tone.
“The key to communicating with someone with aphasia is to be patient, resourceful and flexible, and most importantly, not to treat the person you’re communicating with like a baby,” Buchanan said.
“They are cognitively intact and they should be treated like that.”
People with 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’re so scared of being seen as stupid,” Shumway said.
Learn to communicate
Depending on the cause of the aphasia, some people recover, Shumway said. Whether the condition is due to a stroke or brain injury depends on the extent of the damage done, but the brain can heal.
However, this is not always the case. The National Aphasia Association notes that if aphasia symptoms last more than two or three months after a stroke, “complete recovery is unlikely.” There is no medical remedy.
But people can still learn to communicate, and that’s where speech therapy as well as working with someone with aphasia’s family to find compensatory strategies comes in, Shumway said. A combination of hand gestures, mimicking ideas, writing key words while speaking, and using photos and drawings can be quite effective in getting a message across, she said, noting that aphasia is a family affair because of the group effort required to communicate.
“The people around them become their ramp of communication.”
This was the experience of Vincent Patten, 56, who had to relearn how to communicate with his wife. He had to be patient, refrain from trying to finish Christine’s sentences or interrupt her, be completely present in all conversations, and learn to let her speak her mind – however long it might take.
“You always think you’re a good listener, but you’re not until you’re dealing with someone who has aphasia. You think you might be patient, but you don’t. you’re probably not,” Vincent said.
“You really have to listen and take your time to let someone else take their time.”
‘I was devastated’
Christine Patten has suffered from anxiety and depression since what she thought was a migraine, but was actually cerebral venous thrombosis, left her aphasic. It was while in rehabilitation, after three weeks in hospital, that she realized she had survived a brain hemorrhage and a craniotomy, but something was still wrong.
A speech therapist asked him to explain the difference between a cat and a dog. She could not.
“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 for baking a cake; because his brain wanted to say “June”, but his mouth kept saying “January”.
And while her condition is pretty mild and improving every year, it takes constant work and practice, Patten said.
“You never really end up having aphasia.”