One of the effects of ALS is loss of the ability to speak. The muscles of the tongue, mouth, and throat lose the ability to function. Communication with loved ones, businesses, pharmacies, doctors, and suppliers of services becomes increasingly difficult. New avenues of communication become very important.
So far I have shouted in my best Chewbacca grunt, written on my Boogie Board, and tried a simple form of charades, mostly pointing and editing a phrase to its simplest subject and predicate. To complicate things, my form of ALS includes constant drooling that leads to spitting out unintelligible sounds. For both the speaker and the listener patience becomes extremely important.
After my diagnosis in December 2020 I was registered into the ALS clinic at USF in Tampa. At my June appointment specialized technological communication was ordered for me. Today as I write I am using some of the features of the device that provides access to my cell phone, messaging, email, social media, and the Internet. At some point I will also learn eye-gazing, using my eyes as a stylus.
Not only does this device allow me to write, it also allows me to speak. I can write to speak on the phone. I have a database of words and phrases with a “voice” I select to talk to others. I’m just now beginning to learn what I can do. The process is tedious and takes more time. And I get tired quickly.
My AAC (augmentative and alternative communication) device is provided by Forbes Rehab Services in Mansfield, OH. I receive support from an assistive technology specialist. I’m very grateful for the opportunity to meet the world again to talk, and find a new voice.