Life with MS

As a caregiver, you may have noticed times when your loved one with MS struggles to find the right words to say, or seems confused by what you are saying. The cause may be aphasia, a disorder resulting from damage to the cerebral cortex and affecting communication.
 
While the person with aphasia retains intellect, his or her ability to read, write, understand spoken and written language, and speak or find words when communicating is impaired. There are varying severities of aphasia as well as different types of aphasia, depending on where in the brain the injury has occurred.
 
When communicating with your family member, it is best to use many types of strategies, because sending and receiving messages in a variety of ways can help reinforce your family member’s understanding and expression.
 
Tips for understanding
 
If your loved one is having difficulty understanding you, write out key words and phrases while you talk. For example ask, “What would you like for lunch? Soup or a sandwich?” while writing “soup” and “sandwich.” Point to each word while you say it. This will help with comprehension, while also activating reading and speaking centers in the brain.
 
You may feel that your family member’s understanding is intact, when in actuality it may be more impaired than you realize. You may become upset because they don’t seem to respond to what you are saying, or that they are “forgetting” what was just discussed. People with aphasia may react appropriately during social situations, which gives the impression that they understand the conversation.
 
This may be a successful communication situation on the surface, and it is not to say that they do not understand some of the message; however, your family member may be picking up on facial expressions and other cues that conversational partners are providing. Some people with aphasia may need frequent visual references to help them understand, especially when there are many speakers involved. 
 
Gesture frequently when you are talking, like an informal sign language in which your gesture represents the idea or object. Examples of this would be using your hand in a cutting motion for “cut”, your finger to your temple when saying “think”, or pointing to the cake when you talk about it “Do you want some cake?” 
 
Tips for expression
 
If your loved one can’t find the right words to say, resist the urge to do it for them. Instead, ask them to show you, gesture it, describe it, write it, or even wait a few moments for them to collect their thoughts. You can tell them, “Let’s try again in a few minutes.” Ask them if they want your help. 
 
Depending upon how writing has been affected, you can ask them to write down one or two words to help you understand. For example, if you want to know what they want for breakfast, and they have difficulty telling you, you could ask them to point to the item or to write down its name. Always have a small pad of paper and pen nearby so that you can use this in any setting.  Even if your family member can only write the “e” for eggs, you can narrow down the choices with just this information. You can then clarify the choice by asking, “Do you mean eggs?” while finishing the word for them.
 
When dining out, allow the person with aphasia to do as much of their own ordering as possible. Try to get the restaurant menu before your outing so that you can slowly go over it together. This strategy gives you and your loved one time to explore the different options – “The entrée comes with two side dishes, which ones would you like?”
 
Restaurants are often busy, and the person with aphasia may feel pressure to communicate with an unfamiliar person in a hurry. Another strategy is to ask your family member to point out the items he or she wants to order to the wait staff, or they could write out their order and hand it to the wait staff.
 
People with aphasia can become just as frustrated as you are when they cannot effectively get their message across. Remember that they may not be able to think of the most efficient way to communicate. They are struggling to express themselves in the only way that they can. You may play “20 questions” to get to the right response, but they may need you to guide them through the process to find the right concept. If you find that you are both frequently frustrated, you may want to consult a speech pathologist.
 
Lori Bartels-Tobin, Ph.D., CCC-SLP is the director of the Aphasia Center at Steps Forward in St. Petersburg, Florida. Learn about intensive aphasia treatment, find other caregiver information, and learn about aphasia at www.stepstherapy.com.
 
 (Last reviewed 2/2010)