Although there are often common tools that pALS use or are recommended for communication, one size doesn’t fit all! Choosing the right tools should start with your goals, interests, and needs, instead of just your diagnosis. Two members of our SMAF community have allowed me to share their stories of how they found ways to use technologies to meet communication goals.
For one of our pALS who has experienced speech changes, the iPad with the speech app he owns isn’t usually his preferred method of communication. He prefers to use his natural speech, with his wife providing clarification when he isn’t understood correctly. Even though his iPad isn’t his go-to for day-to-day communication, he decided that he wanted to record stories of his legacy on his iPad. When a shop that he had worked at for many years starting in high school closed down, he decided to type his memories from his time there to share at a closing celebration. He has since proceeded to type more of his memories and life story on the iPad for his family. Using the iPad for typing these stories has helped him to become more familiar with the tool for if he decides to use the speech app.
I also recently met with Bob, who helped his friend who lived with ALS set up an adaptive computer and communication system. Bob researched and found the Jouse, an adaptive computer and gaming mouse that can be controlled by moving a joystick straw. He connected the Jouse to a computer projected onto a larger TV screen to allow his friend to use a computer hands-free for communication and entertainment. Bob set up a custom communication page complete with a call bell and his friend’s commonly used phrases using Powerpoint and easy access to his favorite websites using bookmarks on his web browser. Keeping a sense of humor, they chose a Batman voice to speak the phrases from the communication page and made sure he could easily watch his favorite Western movies. Bob has generously donated the Jouse to the Susan Mast ALS Foundation in honor of his friend’s memory in order to help other pALS who may benefit from this adaptive tool.
There is no one way to manage communication impairment with ALS, and the best tools and adaptations can change over time. What kind of tools have you found to be helpful for communication? Patients of the Susan Mast ALS Foundation interested in assistance communication needs can contact SLP Natsumi at natsumi@susanmastals.org or 616-622-3066 ext. 4 for more information.