This month, Marsha M. shares her perspective as a pALS navigating the process of preserving her voice and preparing for augmentative communication needs proactively:
“I chose to do voice and message banking because my husband and I were noticing changes in my voice such as a “gravelly” voice and low volume as the day progresses. A main issue was fatigue and lack of energy to communicate at length with friends who come for a visit. I realize that I am approaching this common voice and speech concern of ALS a little early; however, the process to get eye gaze technology is fairly involved. I wanted to be forward looking and plan for the days to come. Hopefully this will give me greater PEACE and CONTROL…that technology can be my helper.
“I was concerned about the time it would take to record messages, bank them, meet with a Speech Language Pathologist (SLP) to complete the Augmentative and Alternative Communication (AAC) evaluation and then learn how to use the eye gaze technology. I wanted to get it done before my situation worsened and I wouldn’t have the energy to carry out the process one has to go through to get the right type of communication device.
“Something to keep in mind throughout this process is for someone (patient or caregiver) to be proactive and follow up at all stages keeping good documentation. Natsumi Asanuma is one great SLP that Susan Mast ALS has on their staff. Be sure to include her on your journey to find the best communication device for you.
“I would recommend others bank their voices and messages because it can give you HOPE to still be around, to be able to communicate with friends and family, to share your life stories and lessons with family and to leave your messages of LOVE for family members in your own voice.”
Do you have questions about voice and message banking or communication tools? Patients and families of the Susan Mast ALS Foundation can contact Natsumi Asanuma, SLP, at natsumi@susanmastals.org or 616-622-3066 ext. 4 to receive assistance.
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