Imagine that you can construct fluent sentences in your mind, but only utter “Not good” when asked a question.
Or you remember every moment of your wedding day 48 years ago, but when asked the date, you have to write the numbers 2 and 7, point to them, and say, “This one . . . December.”
Or you recall many treasured stories about each of your grandchildren, but when you look at a photo of all five smiling back at you, you struggle to say their names.
This is reality for stroke survivor Jennifer Swaren, and for many other people living with aphasia.
Living With Aphasia
Aphasia is a disorder that results from damage to the parts of the brain that control language. Often caused by a stroke, aphasia is an impaired ability to produce or comprehend language — or both. It ranges from difficulty finding words to being completely unable to speak, understand, read, and/or write.
Stroke can also impair a person’s ability to move, see, remember, and reason.
It’s been 13 months since Jennifer suffered two strokes following hip surgery. It’s been a difficult journey, with lots of twists and turns, as Jennifer relearns fundamental skills she first mastered as a child.
Still, she and her husband, Ed, feel lucky. Jennifer’s stroke has affected only a small area of her brain. It hasn’t impacted her physical or cognitive abilities.
“Jennifer’s challenges relate to language, which is good, but still very isolating,” Ed explains. “She misses her independence and her social life. She wants to be able to call up the hair salon to make an appointment, chat on the phone with her many friends, and drive herself wherever she wants to go.”
What You Need to Know
Jennifer’s independence relies not only on her own ability to regain her speech, but also on the thoughts and actions of others around her.
She’s not alone. About 1,000,000 Americans and 100,000 Canadians have aphasia, and it’s estimated that another 80,000 people across North America acquire it each year.
If you meet someone with aphasia in your social circle or community, you can help. Here are five things you need to know:
1. Inability to speak is not a reflection of intelligence.
There’s a difference between not being able to give an answer and not knowing the answer.
Consider Jennifer’s last eye exam. She could see the letters of the chart shown to her at the doctor’s office but couldn’t say them. This could have resulted in an inaccurate assessment if the doctor hadn’t quickly recognized and responded to this challenge with a different way of responding.
How to help:
If you’re not sure, ask the person if s/he knows the answer and just can’t say it.
2. Some people need to approach things differently to get the same result.
Standard approaches to certain tasks and tests may not work for someone with aphasia.
Determined to earn back her right to drive, Jennifer is comfortable and confident behind the wheel when Ed suggests familiar trips to the park or the grocery store. A driving school instructor concluded after a road test that she had done a good job. But the result was very different when Jennifer took her formal road test. Driving down unfamiliar streets in a different city (there is no test center where the Swarens live) and trying to respond to random verbal directions left Jennifer feeling confused and disoriented. “This is the biggest single disappointment for Jennifer, and frustration for me,” Ed says. “Jennifer has over 50 years of accident-free driving and can still drive safely when she understands where she is going. She just can’t be tested the same way as others.”
How to help:
If you’re working with someone with aphasia, find out whether there’s an easier way for him or her to perform a troublesome task. If the person is unable to tell you, ask a loved one.
3. Silence is golden. So is patience.
When someone with aphasia is talking, it’s important to listen patiently, even when the conversation stumbles and the speaker struggles to find the right words.
Ed puts it this way: “I’m always putting words in Jennifer’s mouth. I need to let her say what’s on her mind, and only assist when asked.” This is easier said than done. “It’s important to allow a person with aphasia to have the difficulties,” Ed explains. “Jennifer will not develop her speech if there’s someone else doing all the talking.”
How to help:
Be an attentive listener. Focus on what the person says, not on what s/he doesn’t say.
4. Keep it simple.
There are many ways to support a person with aphasia, including keeping distractions and noise to a minimum. Always use adult language, but keep your sentences to single thoughts. Break any instructions down into small, simple steps.
Jennifer can read a recipe and follow it, but she cannot tell you what is in the delicious result. When asking questions, start with ones that can be answered with a simple “yes” or “no,” or give a few clear choices if a question is more complicated. Remember to give the person time to understand and respond. Sometimes this can take a lot longer than you expect.
How to help:
Look for other ways to communicate. Try pointing, hand gestures, pictures, and printing. Some methods may work better than others.
5. Sometimes more is better.
While most people with aphasia avoid large crowds as the fast pace of a group conversation can be overwhelming, sometimes a person with aphasia may feel more comfortable when s/he’s socializing within a small group. One-on-one conversations can put too much pressure on someone with aphasia, and can be equally frustrating for the other person.
“With three, I can sit and listen,” Jennifer explains. “And talk only when I need to. Not on the hot seat.” Jennifer and Ed make a point of each being on a phone extension when chatting with family and friends. Jennifer listens to the discussion and news, and provides comments when she wants, while the conversation flows freely between the caller and Ed.
How to help:
Keep the person involved in the conversation, but don’t push too hard to get him or her to respond.
Most importantly, remember that when you’ve met one person with aphasia, you’ve met one person with aphasia.
Although people with aphasia sometimes share certain characteristics, they’re highly individual in their needs and preferences. Just like every other human being. If you aren’t sure, just ask.
Are you or a loved one living with aphasia or do you work with people who are living with aphasia? Share your advice with us in the comments so we can keep the inspiration going.
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