Many people with ALS (pALS) report variability in how clear their speech sounds, depending on factors such as energy level, time of day, and speaking situation. For those experiencing speech difficulties, thinking strategically about speech by working with your communication partner, setting up the optimal environment for communication, and conserving energy, can prevent communication breakdowns and reduce fatigue. These are often new habits that can be built over time and with a little extra attention.
Coach Your Communication Partner
Often, communication partners feel unsure of how to help prevent and resolve communication breakdowns. Have conversations that help them to understand your speech and communication needs, direct them to resources that explain communication needs related to ALS, or involve them when working with a speech language pathologist. The Boston Children’s Hospital ALS Augmentative Communication Program has a great resource for communication partners here. The following are some strategies for communication partners that may spark a discussion on your personal communication preferences:
Allow for extra time for conversations/interactions and provide your undivided attention.
Allow the pALS to finish what they are saying and avoid interruption.
If you don’t understand something that the pALS said, repeat/restate the part that you did understand before asking for clarification (e.g. “I understood that you want the sandwich, but I didn’t catch what kind”).
Do not pretend to understand. If the pALS appears fatigued, give choices for how to resolve the communication breakdown (e.g. “I want to understand what you have to say, but I’m having a hard time. Do you want to take a break and come back to it later, write it down, or is there someone else you want to include in this conversation to help?”).
Respect the pALS’ autonomy by asking permission to share information about them instead of talking for them and address the person and not their caregiver unless asked by the pALS.
Create a Communication-Friendly Environment
It takes extra effort and repetition to compete with a noisy or distracting environment. Be mindful of the environment and move important or longer conversations to an optimal location whenever possible. Using a personal voice amplifier may be particularly helpful in some challenging environments and consistent use of an amplifier regardless of environment may still help to reduce fatigue throughout the day.
Ensure adequate lighting and make sure your communication partner can see your face. The visual of the face and nonverbal communication can give more information to help “fill-in” some of the gaps.
Eliminate or reduce background noise: turn off the TV/music/radio, be aware of noisy appliances, and move to a quiet space if possible. Some people report choosing restaurants carefully based on noise and set-up.
Consider the size of group conversations. Larger gatherings with side conversations may be more challenging than smaller ones.
Make sure you have the other person’s attention.
Check in with yourself periodically, particularly when you notice more communication breakdowns to see if you can optimize your speech or if you need to take a break. Consider using augmentative communication aids in conjunction with speech, such as a personal voice amplifier or letter board.
Ensure that you are positioned comfortably and upright with adequate supports to have your best posture.
Give context by stating the topic of conversation and avoid quickly changing topics. (e.g. “Let’s talk about tomorrow’s doctor’s visit.”)
Pace speech by breaking up phrases and sentences to one word at a time.
Pronounce all of the sounds of the word, paying particular attention to “skipped over” sounds in connected speech.
Spell or point (using a letter board) to the first letter of the word. This can be used to clarify missed words or can help you to pace speech if consistently used with a letter board.
Mindful approaches to communication such as enlisting your communication partners’ help, setting up the environment, and modifying your speech can help improve comprehension when experiencing speech impairment related to ALS. In addition to trying these strategies, it is important to talk to your speech language pathologist, doctor, and clinic team about any speech changes or concerns to ensure that you get the appropriate individualized support and evaluations completed at the right time.
Speech Strategies from the Boston Children’s Hospital ALS Augmentative Communication Program
Communication Basics for pALS from Amy and pALS