On a Mission to Build Aphasia Awareness

 

I was singing at church choir practice when suddenly I fainted. With no warning, I fell against the tenor sitting next to me, totally unconscious. Someone called 9-1-1. When I came to, I was lying on the floor. The EMTs lifted me to the stretcher and took me to the ambulance. When I was inside, I said, "I am aphasic."

Fortunately, the EMT was familiar with my condition, and he said, "I understand that." The hospital is right across the street from the church, and I was soon in the emergency room. Someone had called my sister, and she quickly arrived as well. Things went smoothly after that. The doctor suspected a minor heart attack, and I was admitted to the hospital for a day for observation.

Nothing really serious came of the experience, but it made me wonder about other people with aphasia. What if one of them has a stroke or heart attack, or is in an auto accident or falls and breaks a bone? Are all emergency responders familiar with aphasia? Do they know enough about it to be able to communicate? I decided to do what I can to build awareness and understanding of aphasia for emergency personnel.

I have lived with aphasia for more than 32 years. I have made progress from those first days and months when I could not speak at all, but I still have difficulty expressing my thoughts and understanding what others say. It's frustrating, but it can be very serious in an emergency situation. I am fairly fluent for someone who has aphasia. There are many other people with aphasia who have much more difficulty communicating than I do.

Aphasia Defined

First of all, what is aphasia? Aphasia is an acquired communication/language disorder, usually caused by stroke, head injury, brain tumor, or neurological conditions. Aphasia impairs a person's ability to speak, process language and sometimes understand others. Most people with aphasia experience difficulty reading and writing. Aphasia does not affect intelligence.

Aphasia affects people to different degrees, depending on the severity of the injury and where in the brain the injury occurred. The most severe form is global aphasia. The person can produce few recognizable words, understands little or no spoken speech and can neither read nor write. After I experienced the burst brain aneurysm, I would have been classified as having global aphasia. In my case, I was able to improve, but for persons with greater brain damage, the disability may last indefinitely.

Speech output is severely reduced for persons with non-fluent aphasia. They may be limited to short utterances of four words or fewer, and speech is halting and takes great effort.

Persons with fluent aphasia can produce speech more easily, but it may not always make sense. For example, I still sometimes confuse tenses, gender, prepositions, pronouns and cannot always find the right word to say. Because persons with fluent aphasia may exhibit nonsensical speech and have comprehension difficulties, their condition may be confused with mental illness or alcohol or drug impairment.

Communication Tips

How do you communicate with a person with aphasia? Here are some communication tips from the National Aphasia Association (NAA):

 

  • Have the person's attention before you speak.
  • Minimize or eliminate background noise (sirens, TV, radio, other people).
  • Keep your own voice at a normal level.
  • Keep communication simple, but adult.
  • Confirm that you are communicating successfully with "yes" and "no" questions.
  • Repeat statements or directions when necessary.
  • Give the person time to speak and resist the urge to finish sentences or offer words.
  • Communicate with drawings, gestures, writing, and facial expressions.

 

Identifying Aphasia

What to look for if you suspect aphasia:

 

  • The person may not be able to grasp what it is you are saying, even if he/she is speaking fluently.
  • Speech content is not fluid and may not seem "normal."
  • The person may be unable to provide "yes" or "no" answers.
  • A person with aphasia may have no physical disabilities. You have to use indicators and investigative skills to determine if the person has aphasia or a mental illness.

 

Building Awareness

Language is a key identifier. Speech may be halting, with the person making an effort to speak. He or she might not be able to find the right words or the words may come out wrong. The person may become frustrated. The inability to communicate is inherently frustrating. This is not directed at you--don't take offense.

In the spring of 2008, NAA, with the generous support of the Christopher and Dana Reeve Foundation and others, launched an aphasia awareness training program aimed at first responders. Training focused on teaching police, firefighters and emergency medical technicians how to communicate in emergency situations with persons who have aphasia. Training was delivered in Connecticut, New York, and New Jersey, but response to the program has been so positive that NAA is now going national.

NAA has developed a variety of PowerPoint presentations, along with training materials to share with others who are interested in promoting education in aphasia awareness. These training modules were created to be modified and adapted to various audiences based on need and focus. If you would like to start a training program on your own or through your university, school, community center, or organization, contact NAA at 800/922-4622 or e-mail NAA@aphasia.org.

My experience with emergency responders had a very positive outcome. Building more awareness and understanding among emergency responders can help make this true for all people with aphasia.

John A. Liechty has been aphasic since 1978. He is a volunteer with the National Aphasia Association and has helped form his local aphasia support group. He received the 2009 Advocacy Award from National Aphasia Association.

Donald W. Garber has a BA in communication and religion from Goshen College. He is a freelance writer and editor.

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