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 Pam VanVliet, Care Services Manager
Making Memories is so important with family and friends especially when living with ALS. Traveling can be tricky and being well prepared can ensure you have a great time!
Here are a few tips when preparing for your trip:
1. Contact the local ALS Association in the areas you will be. They can deliver manual wheelchairs, raised toilet seats, portable ramps, and other equipment you may need.
2. Pack a separate suitcase with any items you require for your comfort such as;
Make a list of what your needs will be and let the hotel know. If you can, look at pictures of the room you will be staying in to get a feel for what the "Handicap" room means to them.
These are just a few things to think about. You can travel well and make great memories living with ALS!
by Emily H Brechting, Patient Support Psychologist
My family has been caught up in the excitement of the Summer Olympics in Tokyo. We gather together to watch the day’s events and collectively marvel at the spectacular displays of athleticism. We ooh and ahh, cheer at the screen like the competitors can hear us, and relish those surprise victories. Some of us (ahem, it’s me) wipe tears during stories of adversity and sacrifice.
Recently, we learned about the daily training regimen and dietary plan of one highly decorated swimmer. The commentator described untold hours of exertion, outlined rehabilitation and strength training, and explained carefully selected nutritional plans. In sum, this one athlete navigates each day with a singular focus.
Dedication. Endurance. Focus. Wait—that sounds like so many of our ALS families.
Before you dismiss my comparison of ALS patients to Olympians, hear me out. Consider the time and energy exerted by patients and families to navigate a single day of meeting nutritional needs: preparation, chewing, swallowing, administering feeds, cleaning feeding tube equipment. Now think about the time and energy expended to transition from bed to a powerchair for the day: getting out of bed/using a lift, bathing, toileting, dressing, getting into the chair. I could continue on this theme highlighting the demands of living with ALS, from leaving the house to navigating a clinic appointment, but I’ll stop here.
We don’t hand out medals for living with ALS but maybe we should. Let’s recognize these warriors and their amazing caregivers who make their daily fight against ALS possible.
They endure. They persist. We see you.
Susan Mast ALS Foundation