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Experiences and tips from people with ALS and their communication partners

The change in communication skills that comes with ALS not only impacts the person with ALS, but also impacts the communication partners. The rhythm of communication is changed, whether a person with ALS is using natural speech, quick access tools or a sophisticated high tech system. In such situations, communication partners often try to reduce the burden or lessen possible frustration by interpreting, guessing or in some instances simply speaking for a person who has ALS.

People are uncomfortable with silence and feel the need to fill it. Because I'm slower, other conversations start or people ask me lots of yes/no questions, and not only do I lose the opportunity to complete my message, but I also lose the opportunity to be part of conversations, while I'm putting my message together.

R.H., age 55

It is important for partners to remember first and foremost, that the person with ALS is the same person but is unable to speak clearly or communicate as quickly. Yes, this is a simple and obvious statement but most often people change their behavior when communicating with someone who has a hard time speaking.   People with ALS report experiences such as:

  • "People talk to my husband about me and refer to me as ‘her’ when I am right there!"
  • "While I am putting a message together, someone jumps in and speaks for me!"
  • "If people ‘guess’ and ‘predict’ for me, I still complete the message…even if they got it right.  It is the only way to make it clear that I want to stay in charge of ME."

The following graphic has been sent to us by several people with ALS, reporting that this is what they feared was happening to them.

Decorative; "what I think"; "what I say"

As communication partners, changing our behavior can really help reduce this fear.

In our Jay S. Fishman ALS Augmentative Communication Program clinic, we’ve had LOTS of opportunity to listen to, encourage and often participate in conversations between people with ALS and their primary communication partners.

Hear people with ALS share their perspective and opinion on a partner predicting messages.

When asked to provide suggestions to communication partners, people with ALS told us:

  1. Don't talk louder just because I can’t talk.
  2. Don't talk over me as I try to communicate. My speech is compromised and it takes too much energy to continue to try to get my message across while you interrupt/over ride me.
  3. Don't interrupt — PLEASE let me finish my thought, otherwise it sends the message that you don’t value what I have to say.
  4. Recognize that when an efficiency strategy is used by someone with compromised speech  (using fewer words or speaking in a direct manner) it should not be confused with a lack of sophisticated linguistic competence or social skill. 
  5. If you didn't call me "dear," "honey," or other terms of endearment before my disease, don't change the way you talk with me now unless we have recently developed a more intimate relationship.
  6. Don't touch me (move my arm, etc.) or my chair without letting me know you are going to and, requesting permission.  
  7. I know you are trying to be efficient or save me from fatigue by speaking FOR me, but please ask my permission before sharing information related to me. 
  8. Even though you may know the requested information ALWAYS ask me if I want you to speak for me so everyone in the conversation is clear that I am in charge.
  9. I’d rather you talk with me, tell me stories and fill me in on your life — even when I have a hard time holding up my end of the conversation — as opposed to not talking with me because you know I have a hard time responding.