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Communication Strategies for Speech

6/29/2020

By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation

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.

Speech Strategies
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.

Conclusion
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.
Resources

Speech Strategies from the Boston Children’s Hospital ALS Augmentative Communication Program
Communication Basics for pALS from Amy and pALS

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No Travel Required: Using a Communication Passport to Ease Interactions

6/16/2020

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By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation

Much like how a passport identifies key information about travelers across borders, a communication passport can be a great tool for sharing information about your unique communication needs to others. Learn what a communication passport is, what to include, and free templates for making your own.

What is a communication passport?
A communication passport is a quick way for someone with a complex communication needs to share their needs and preferences for how to best communicate. Many people with ALS (pALS) experience communication challenges, ranging from fatigue and weak voice/speech when tired to utilizing a communication device or system to replace speech. A communication passport takes the burden off of the pALS to explain their best communication methods to new communication partners and can hold commonly needed information that is often repeated. The communication passport can be an actual notebook or pamphlet, a digital note, a business card, or signs posted on your communication device, living area, or wheelchair, and should be easily accessible to share with others.

What to include in a communication passport
Your communication passport should reflect who you are and what your needs are at this time, and should be updated as needed. It can be written in a straightforward style or can incorporate humor. The following are some examples of things you may choose to include:

Personal information: The basics such as name, birth date, contact information
Emergency information: Emergency contacts, allergies, medical diagnoses, hospital and doctor contacts, clinic information
People: Names, contact information and relationship to family members, friends, and/or other important people.
About ALS: A brief explanation of ALS and how it affects your communication. It may be helpful to include a statement about how ALS does not affect your hearing or understanding, even if speech is reduced. The ALS Association’s Medical Information Packet has good information included in it.
Communication:
- Your best method for communication: Examples may include speech, communication boards, communication device (you can describe further, e.g. “I use a computer controlled with my eyes to speak”), writing, or with my caregiver (specify the person). You may also want to include information on how to set up your communication system (e.g. “Please make sure I have access to my notebook and pen when talking” or “Please make sure my iPad is switched on and on my lap”).
- Yes/No Signals: How do you signal yes or no?
- Communication preferences & tips: What do you need your communication partner to understand about communicating with you? Examples may include, “Please give me extra time to type my message,” “Let’s talk in a quiet area,” “I will let you know I’m getting tired by...” or “Please include ___ in all important discussions.” The Boston Children’s Hospital ALS Program has a great list of communication partner tips compiled from feedback from pALS.
- Basic communication boards: Including an alphabet board or other quick access tools. The Boston Children’s Hospital ALS program has a great free download here.
Make it personal: Include information about you. What are your likes/dislikes? What do you like to talk about? Including information about favorite sports, memories, movies/TV, books, and interests can help others to get to know you.

Examples of Communication Passports
Communication passports are used by people with complex communication needs arising from any diagnosis or age range. The following are some examples online of communication passports, but note that they are not all specific to ALS:

The ALS Association:
- Medical Information Tools: A compilation of free downloads and digital apps. You can also request printed copies from ALSA.
- Medical Information Packet: This tool goes beyond communication and provides places to organize your medical information.
The University of Edinburgh Powerpoint Template: A free downloadable template for an adult communication passport.
Inclusion Communication Essex Communication Passport Templates: Free downloadable templates in Word format

Conclusion
A communication passport should be a “living document” that is edited to adapt to your current needs to ease the burden of repeating commonly shared information about how to best communicate with you. It is flexible in size and scope, so you may choose to start with jotting down a few key points to share with others and build the passport from there. Consider recruiting a family member or friend to work on this together, and talk to your speech language pathologist for further information about communication supports such as these. Find out more about communication support for West Michigan ALS families through the Jim’s Voice Program.

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Communication Strategies for Speech

No Travel Required: Using a Communication Passport to Ease Interactions

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