Speaking out on aphasia
By Sue Tiffin
In the first hours after a massive stroke affected one third of Barb Thibault’s brain, her doctor told her husband that she’d be dead within 36 hours.
Instead, almost five years to the day of the ischemic stroke that at first left her unable to walk, talk, or independently care for herself, the feisty, humorous, strong-willed woman sits alongside her partner and grandchild, both who she learned over time to remember and recognize, and the speech therapist she met in the first few days at the hospital.
It’s not immediately apparent that Thibault has experienced any sort of medical event – neurologists will look at her inches-thick file, then at her, and back at her file in surprise – except that sometimes she switches pronouns as she speaks, and her family will seemingly subconsciously make hand motions for numbers when they say them, helping to give a visual when there is a disconnect with the audio.
And then 40 minutes into the interview, Thibault begins purposefully sharing examples of what her aphasia can sound like.
“Chihuahua,” says her granddaughter, Maleeka Fortier.
“She-wanna-wanna,” says Thibault, in an attempt to repeat the word.
“Rhinocerous,” says Bob Wilson, her husband.
“Rhino-isserin,” says Thibault, clearly focusing intently and becoming frustrated as she speaks.
“Mosquito is another one,” says Fortier.
“Mushskwashesidin?” asks Thibault, then motioning for everyone to wait, “I’ve got the word.”
Her family pauses as she attempts to pull the word intact from her brain to her mouth, until Wilson sounds it out: “Mo, ski, does,” he says, enunciating each syllable, tracing the letters on the table as Thibault watches closely. “She can visually see the word mosquito.”
“I can see the word mosquitoes,” says Thibault, and then excitedly, “I’ve got it!”
Usually the result of a stroke or brain injury, aphasia is a communication disability that causes language impairment, affecting the way a person understands or uses language. It can affect people in different ways, from anomic aphasia, in which speech is understood but words are difficult to find, to Wernicke’s aphasia in which a person can speak fluently but with sentences sometimes filled with jargon, to global aphasia, in which people can speak few recognizable words and might also have challenges with reading and writing. According to the Aphasia Institute, more than 100,000 Canadians have aphasia, including what Alison Mack, Thibault’s speech language therapist, estimates to be a handful of people in Halburton County.
“The primary thing I want people to know about aphasia is the person they knew is still there [cognition is intact],” she said. “Aphasia has impacted their language ability. However, with a little instruction, it’s amazing how well people can learn to communicate with someone with aphasia.”
Thibault said she remembers nothing at the point of the major stroke. She remembers Wilson telling her he thought she was having a stroke, she laughed, and then the world went blank. She was aware in the hospital but didn’t recognize her visitors, and was frustrated with her lack of speech, at first being able to communicate in writing with her left hand.
“I didn’t know anybody,” she said. “I was scared all the time. Bob would come, and I’m standing, thinking, why is he here all the time, I don’t even know him. Maleeka, I don’t know her. And I’m looking, and my whole world is gone, everything.”
Through extensive rehabilitation and perseverance that her family acknowledged and encouraged, Thibault began regaining skills, including speech. Fortier was only eight, but the girl visited her grandmother and showed her how to play Hangman, the word game.
“Every night she helped me, an hour a day,” said Thibault. “I didn’t know what I was doing, but I was doing it. She was doing it, and I was doing it.”
Alison Mack shows Barb Thibault a program used to help people affected by aphasia, an acquired communication disorder that impairs a person's ability to process language.
During her stay in the hospital, she learned she would become a great-grandmother for the first time when her grandson told her she had to get better so she could meet his baby.
“I remember that Lincoln told me that he and Holly were having a baby, but I didn’t understand what a baby is,” Thibault said, becoming emotional at the thought of what she might have missed had she not survived.
But besides surviving, she thrived. Wilson advocated in the hospital to help ensure she had what she needed, even when that meant going home for dinner just three weeks after the stroke.
“She started writing first,” said Wilson. “‘I want to go home.’”He told the doctor his wife wanted to go home, just as she was starting to walk.
“So we’re about to leave, and she says, ‘make dinner,’” he said. “I said, ‘yes, I’m going to make dinner.’ Then she pointed at herself, ‘make dinner.’”
That night she found what she needed at the grocery store, got home on a leave from the hospital and made dinner.
“She made spaghetti from scratch,” said Wilson, half in amazement and half in acknowledgement of Thibault’s determination. “Like, homemade sauce from scratch.”
Mack said Thibault can speak to what aphasia is in a way that most people who have aphasia cannot.
“People with aphasia can’t usually say what it’s like to have aphasia,” said Mack, and to Thibault: “You have aphasia, but you can talk enough for the rest of the world to start to hear.”
Thibault said aphasia can create challenges when people don’t understand her, don’t recognize that she has a disability or don’t have patience in trying to better comprehend her communication. Besides some words being difficult for her to pronounce, she said that although she can use number words fluently, when she hears them they are muffled, requiring adaptations including multi-modal communication exhibited by her family, and by medical professionals when they text rather than call appointment scheduling.
“Every day it’s a fight,” she said. “I don’t care what everyone says. I know I talk really good, but I’m not perfect. Not the way I used to be. It’s a fight every day. Especially people don’t understand what’s wrong with you, what happened to you. Sometimes my brain is saying the right things, my mouth is saying something else. I’ve got to be very slow sometimes when I’m upset or whatever, I’ve got to really think, but every day is a fight.”
Mack said more supports are needed for people with aphasia, and for the families who support them.
“In 1985, Rick Hansen started his Man in Motion tour and since then the public’s awareness of people with physical disabilities has changed a lot,” she said.
“Buildings are now constructed with ramps to get access and many buildings have been retrofitted to have accessibility ramps. But when it comes to communication impairment, the public doesn’t have the same awareness and knowledge. We need to start building ‘communication ramps’ for people with communication disabilities. Community awareness and knowledge builds empathy within a community but also a public confidence to step forward rather than to step away from people dealing with communication issues.”
"I'm a strong woman, I know I am."
“My brain, sometimes I’m getting frustrated because of the numbers,” said Thibault. “Or I have to ask someone else to help me. Or I don’t remember sometimes. I was a really smart woman until the stroke.”
“You still are,” said Wilson. “You just have a hard time getting things out.”
“I’m a strong woman, I know I am,” said Thibault. “But smart, my memory’s gone.”
“Barb is a force unto herself,” said Mack, later. “That she has been able to wire and [has] re-wired her brain to do what she can do, defies my descriptive abilities.”
Wilson said it’s essential that people who have experienced a stroke are supported by hospital staff and family members, noting he saw some people in the hospital whose families were not always there for them.
“Never give up,” he said.
“You just have to take time and help them understand what they’re going through,” said Fortier, who is 14 now. “You’ve got to be there for them. If you were in that position you wouldn’t want someone giving up on you or ignoring you all the time. You can’t just stop talking to someone if they have problems. You’ve got to help them through it ... you have to have people there for you.”
“It’s a struggle every day, every day,” said Thibault. “I’m so lucky to be loved by my family. It’s most important. Just tell people, sometimes speech is not the same. People are different, especially if people have had a stroke or any brain injuries, it could be anything. Stop and listen. Listen.”
Aphasia Camp 2019 will be held at Camp Wanakita this weekend, bringing together people with aphasia and their families to enjoy a camp atmosphere and be with others with similar life experiences.
“The camp will be what the camp is, it’s a different experience for everybody,” said Mack. “Part of the advantage of having 10 volunteers from Haliburton come to that camp is so 10 people in the county will get to know what aphasia is. Now we’ll have 10 people with lots of experience, a whole weekend of experience, working with lots of different types of aphasia, and learning to use the different techniques. Sometimes it helps just to slow down, or repeat every once in awhile, some people write key words, or pictures, or gestures … or hangman.”
The March of Dimes Aphasia Camp 2019 runs from Oct. 4 to 6 at YMCA Wanakita in Haliburton. For more information about the camp, contact Mara Manzato, camp coordinator, March of Dimes Canada, at 416-571-0467.