Think of the many tools we all use for communication. I’m typing this on a computer keyboard, texted my friends, called a patient on the phone, and took notes on a pad of paper with a pen. These days, there are countless tools available to support communication, and we are all more proficient with some more so than others.
We speech language pathologists (SLPs) often talk with people with ALS (pALS) about a broad range of tools called Alternative and Augmentative Communication (AAC). Many (though not all) pALS will experience changes in their natural speech or voice, and AAC encompasses tools and strategies to make communication as effective as possible for these pALS. Though some utilize speech generating devices or other tools to take the place of vocal communication when speech is not an effective option (the “alternative” in alternative and augmentative communication), there are many options in between to boost (or “augment”) your natural speech. AAC is not an all or nothing approach.
For those starting to notice changes in their voice, speech, or endurance with talking, first identifying your challenges and personal preferences or goals can help with identifying an augmentative communication plan.
Identifying the Challenge
Time of day or energy levels: Do you notice your speech is worse at the end of the day?
Communication partners: Do some communication partners have a harder time understanding you than others?
Environment: Do you have a harder time speaking in the car or when wearing a mask?
Content of speech: Is your address a particular tongue-twister?
Identifying Goals
Communicating information: Is the content of communication the biggest priority in this situation, even if it takes more effort?
Connecting with others: Do you just want to spend quality time with this communication partner, even if you don’t exchange much information?
Expressing personality: Is the way that you communicate most important in this situation?
Simplicity: Do you wish to take the simplest path in this situation?
For example, one might feel more fatigued with talking as the day progresses and prioritize correctly communicating information about bills with their spouse in the morning and prioritize quality time and connection with their spouse during their quiet afternoons. Augmentative Communication strategies involve making adaptations and using tools to optimize speech for the challenge and goal of communication in that specific situation.
Tools in the Augmentative Communication Toolkit
Guidance from a speech language pathologist that knows your situation well can be helpful for identifying the right tools for you, but here are some examples of augmentative communication methods. You may have even identified some of these tools on your own! Remember that these are new skills for you and likely your communication partner, and trial and error with practice can go a long way.
Self-advocacy: Expressing your communication needs to others can help ease interactions. This can take many forms including a conversation, an e-mail prior to meeting with someone, sharing an article about communication needs with ALS, a communication passport, or a few written bullet points about your needs on a card.
Personal voice amplifier: A voice amplifier is a microphone that a pALS wears that is attached to a small speaker often worn on the belt or on a strap that boosts the loudness of the speech. Though it won’t change the articulation, or pronunciation, of speech, it can be helpful with reducing fatigue if used throughout the day and can make it easier for communication partners to hear the pALS’ speech.
LCD Writing Tablet or White Board: Writing can also be used to supplement speech. Sometimes, pALS may be able to speak to communicate most of their message, but may have difficulty getting across one part of their message. If writing (or typing on a phone) is accessible for the pALS, just writing the challenging word (and not the entire phrase) can often be a quick way to clarify a message. LCD Write boards, such as the Boogie Board, have the advantage of being lightweight with no need for ink or erasers, but function similarly to a white board.
Paper alphabet & communication boards: Simple alphabet boards, such as these free printable boards or premade ones for purchase, can be used to augment speech by providing the communication partner additional information to help them understand speech. By using a first-letter supplementation strategy, pALS can point to the first letter of each word they speak aloud. This also has the benefit of breaking up separate words and pace speech for greater clarity.
These tools can be used in combination or as needed. For example, a writing tablet and personal voice amplifier used together may be helpful for a pALS communicating with someone who is hard of hearing. For another pALS, first letter supplementation by pointing to an alphabet board may be more effective if writing is a challenge, and this strategy may only be necessary when speaking to communication partners less familiar with their speech.
Though there is a chance of speech abilities changing with ALS, there is always hope of learning new communication skills. The Susan Mast ALS Foundation offers education on these strategies and more, as well as a communication loan closet that includes these quick access tools, through our Jim’s Voice Program. If you are registered with our Foundation and are interested in working with a speech language pathologist to learn more, please contact Natsumi at 616-622-3066 extension 4 or natsumi@susanmastals.org.