We can all agree that ALS sucks: it sucks the life out of it’s victims, sucks their independence away, sucks their future, just flip’n sucks. One of the hardest parts for me to grasp and come to terms with is that one day I will not be able to open my mouth and talk. Just talk. Talk about my day, talk to my husband, tell him “I sure do love you”, talk to my cat, talk to anyone about anything. I talk, I’m a talker, we all know this, and the thought that one day in the closer than comfort future I will not be able to do the one thing that has always come so naturally for me, well that just sucks.

Luckily, there is a phenomenal thing on my side: technology. Kenneth and I watched the Gleason Movie last night, and one thing Steve said was that technology has the ability to give back all of the things that ALS takes from you. I did some research (understatement) and found the ModelTalker System. From their site, “The ModelTalker System is a revolutionary speech synthesis software package developed by the Nemours Speech Research Laboratory and designed to benefit people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that is representative of their own voice.” So, as my Drunkle Sam said, “You’ll be able to cuss at us in your own voice”.

This is a really cool thing, I login and complete exercises that are stored in an online database that I will be able to have uploaded to my communication device of choice when that day comes. Thanks to the Steve Gleason Act, many people will be able to have this basic right of speech covered by Medicare. I am grateful that this technology is available, even if somewhat robotic, it’s still a little part of me hollering through the speakers.

According to the site, it takes a strong speaker around 6 hours to complete the exercises. They encourage you not to do it all in one sitting (thank goodness) and to do it first thing in the morning when your voice is strongest. Problem is: who has that kind of time? This is something that is going to be intricately worked into my daily routine. I know  I will appreciate having this one day, but right now it’s a pain in my butt. I’ll get it done, not by Saturday but it’ll get done. I promise.