ALS Augmentative Communication Program | Partner Training

Experiences and tips from people with ALS and their communication partners

“I’ve noticed that people are uncomfortable with silence and feel the need to fill it, even as I am putting together a message.  Because I am 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 the conversations happening while I am putting my message together”  R.H., age 55

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. 

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.

Boston Children's ALS Program

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

In our 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. We wanted to highlight some of the comments and suggestions here.

“I thought I was helping my husband by asking him lots of yes/no questions instead of making him have to create all the messages on his device.   It wasn’t until you {clinician in ACP} modeled how you waited and listened to him AND gently let me know that I was not letting him be in control at all, did I realize everything I was missing. I had to work to break old habits; but the realization that I was not letting HIM talk kept me on track. Before ALS, he was head of household. Now because I wait and I listen, he is again head of household! This was particularly good recently as he stepped in and grounded our son for his behavior and I am not a good disciplinarian."  A.K, wife of S.K, age 54

“In our family, we have needed to change our style. We don’t want to miss anything he says so we are learning to just be present in the moment with him.   He has tools and strategies that work for him if we give him time.   We know not everybody can do this but for us, it is an obvious shift in the way we function. I wait my turn.Our kids wait their turn.The grand kids will learn to wait their turn." J.P., wife of M.P, age 76

"I mean, if you are inpatient, I feel less willing to engage with you if you are rushing me through the process of trying to communicate" H.L. age 58 

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.