By Natsumi Asanuma, MS, CCC-SLP
Preserving and cherishing personal memories is often an important part of many pALS journeys. The use of audio and video recordings can be a good way to capture these stories and your voice. Message banking and voice banking are commonly used by pALS who have experienced minimal speech changes to preserve their voices digitally, in case a speech device is needed in the future. However, recordings in recordable books, albums, and digital interviews are additional methods that provide opportunities for creating that personal record.
Message Banking is a method of recording phrases of your choosing into a digital recorder to save in case a speech device is needed for communication in the future. First started in the ALS augmentative communication program at Boston Children’s Hospital, they coined the term “Legacy Phrases” to mean those phrases that are unique to you: the way you voice affection, humor, favorite jokes, signature sayings. Though message banking’s primary goal is to save phrases for a speech device, pALS often use this process as a way to save special messages for loved ones as well.
Recordable Books & Albums
Another way to preserve and share voice recordings is with recordable books and photo albums. For pALS with important children in their lives, recordable storybooks (can be found online or at stores like Hallmark) can be an easy way to save stories read in your voice. A talking photo album is another way to record memories associated with personal photos or to make your own custom recordable storybook with a little creativity. This album by Talking Products has additional features including locking recordings, a headphone jack, and a USB plug to transfer audio files for a back-up. Remember that these products and recordings are not compatible with speech devices and would be enjoyed as is.
Digital interview apps provide question and discussion prompts combined with an audio and/or video recorder to preserve your stories. RecordMeNow is a free app that allows you to choose your own prompts and creates videos of your responses that are saved directly on your phone’s photo album as videos that you can choose to keep private or send to loved ones. StoryCorps is a project aimed at preserving stories through interviews between two people. Though StoryCorps encourages sharing stories, the app is free and does not require publishing the interviews. With digital interviews, those who use speech devices or apps may use them to answer questions and communicate in the recordings, however, the recordings would not be used for message banking.
What are some ways you cherish your memories? Have you tried any of these recording strategies? For patients of the Susan Mast ALS Foundation interested in assistance with message and voice banking or other communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or firstname.lastname@example.org.
By Natsumi Asanuma, M.S., CCC-SLP
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
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.
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 email@example.com.
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.