Medical Conditions Related to Brain Injury
When aphasia locks up your language
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Imagine living in a foreign country where you can't speak the language. You know exactly what you want to say but your thoughts and words are imprisoned in your brain. Now imagine there is no key to the prison cell – you have no ability to learn the language and unlock the door to communication. This is how speech language therapist Liana Flanagan describes the frustration and isolation of aphasia – a condition characterized by problems with language comprehension and expression, caused by a stroke or brain injury.
As Joy Kinnear walks from the door of her peaceful Upper Hutt house to the lounge there is no indication that she is a stroke victim. She's bright, lively and mobile, but she drags her left leg slightly as she walks. It is only six weeks since she suffered a small stroke that took all feeling from her left side, but she has made huge progress and is up and walking again. As well as the physical impact, the stroke left the 64-year-old with aphasia. She has only a mild form of the condition – her speech is a little stilted as she fumbles for the right word, and she occasionally mixes tenses or confuses words.
"It doesn't mind me (where I sit)," she says as we take a seat in the lounge. Joy is relentlessly positive about the outlook and laughs at her own mistakes, even threatening to compile a book of the novel words and phrases she has created. But in the past few weeks she has had a frightening insight into the potential isolation of losing your ability to communicate.
On July 7 she woke feeling "funny", after a few days of heavy tiredness and an uncharacteristically restless night's sleep. "I could not really do anything. I could not move myself. I was just sort of `blah' in bed." Realizing she could not feel one side of her body, Joy feared the worst.
"I kept going like that to Stuart," Joy says, tracing her hand under her chin to symbolize cutting her throat. "I thought I would be paralized. My feet could have been around my neck and I would not know. That was very scary. I was saying I don't want to be like that. I think it was the next day or after that I realized I was not paralyses." At the same time she realized she could not express herself with the ease she used to. To start with, words frequently escaped her and she was forced to rely on gestures.
"You have the words up here," she says, pointing to her brain. "But by the time I say it, it comes out wrong." She laughs as she remembers, in hospital, asking for some more envelopes for thank you cards. "I was saying `elephants'. Even now I still have trouble sometimes. All those sorts of words go funny." When an expression sticks in her throat, she builds the word on her right knee, carefully tracing letters with her finger and mouthing the sounds.
Though Joy jokes about her condition, Stuart provides a glimpse into the fear the couple first felt at the prospect of being unable to communicate freely. "It was a big shock – I had always regarded Joy as the healthy one in this partnership. Those first days were pretty dark." Though Joy understood speech, she was unable to read, because the aphasia played havoc with her brain's ability to process and understand written words. She remembers trying to read the newspaper in hospital. "I was reading `the cat on the mat', but it was not in my house, my head. After about a week I thought `I will try to read something in a book'. The first time I tried I could not do it properly but after a couple of days I tried it again. I sat in bed and was able to have this story in my brain. I knew what the story was about. That was lovely because I love reading."
Joy's diary is a good indicator of her progress. In the first days after the stroke the script is that of a primary school child – careful and deliberate, with words and letters missing. Beef stroganoff becomes `beef sturo off'. In one instance, she drew a picture of her walking frame, because she could not find the word. Now the pages are filled with a legible scrawl – still neat, but shaped by the personal style that comes with age. Though she has come a long way, her speech sometimes lapses when she gets tired. "Stuart reckons I'm better on the phone. Maybe I should go round with one of them all the time."
And she has difficulty with numbers. She sees the symbol but her brain cannot recognize its meaning. She can remember her phone number and age, but can't remember her cashflow card PIN, which makes life difficult. "I can't get my money out at the moment. Phone numbers are just hopeless."
FOR JOY, the prognosis is good. With ongoing speech therapy she is likely to be back to normal within a few years. But she is one of the lucky ones. For many, aphasia shuts them completely out of communication, Liana says. "It is absolutely devastating for the patient and family. Most of them know exactly what they want to say but they have no access to the outside world. They can't understand they have had a stroke, they don't know what has happened. They can't tell people when they want to go to the toilet." "They communicate through gestures and facial expressions but to have any meaningful communication is pretty much impossible."
At its worst, aphasia is "like being in a foreign country without any ability to speak the language and no ability to learn it," she says. Aphasia can be caused by any type of brain injury involving the left side of the brain that deals with the expression and understanding of language. It is relatively common and usually results from a stroke, head injury or some forms of dementia. About 20 New Zealanders a day have a stroke and about eight of those develop aphasia. Because it affects comprehension, aphasia can impact on spoken or written language, Liana says. "Some people can't understand at the single word level. They can't read, write or speak. There's a complete shutdown of communication. They don't recognize a picture as a symbol of language." Some cannot even make basic yes or no choices, as they don't understand the question being asked.
There are four main components of aphasia:
- Word-finding problem: this is the hallmark of aphasia. Those affected know what they want to say, but just can't get the right word out.
- Comprehension problems.
- Fluency problems – speech can become quite halting, as the person repeatedly stops to find the right word.
- Repetition.
Its treatment depends on the severity of the condition, Liana says. The main goal is to find a way for the person to communicate effectively. To help with the most common problem of word-finding, therapists teach word associations. For example, someone trying to think of the word for horse is told to think of the words donkey or farm as prompts.
Every person is different and the prognosis depends on the extent of their brain injury, age and attitude, Liana says. Someone who has a severe stroke and shows little improvement in the first few weeks is less likely to recover all their language, whereas younger people with smaller strokes, like Joy, tend to do better. "You can never predict who is going to be able to do what."
Stuart believes a lot of Joy's improvement is a combination of will and good care. "She has improved tremendously, it's just unbelievable. I think a lot of it is determination, but the rehab unit was fantastic. For me as an observer – you look at people and think `That person is never going to get out of bed' and a week later they will be walking."
Joy has just one message from her experience. Because she never went to the doctor, she had no idea she might be at risk of a stroke. "I only used to go when I was really sick. I probably had high blood pressure, I don't know. That's the message – tell people to go and have regular check-ups."
For More on Aphasia, read Help and Hope for Aphasia.