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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:
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.
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.
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
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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:
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:
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. |
AuthorSusan Mast ALS Foundation ArchivesCategories
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