A few weeks ago, I wrote to you about how difficult it has become for people to interpret my ALS accent, and the difficulties it presents for both me and those trying to understand. Recently, we discovered a device that may provide at least a partial solution. It is a small computer made by a company called DynaVox (DynaVox Mayer-Johnson | AAC Communication Products & Services). This device will attach to my wheelchair, and is activated by the movement of my eyes. By moving my eyes across various screens, I can scan a keyboard or lists of words and phrases, and when I find the one desired, a simple blink of the eyes selects it. After composing something to say, another blink signals the computer to speak it for me. It can be programmed with custom words and phrases. It can also be programmed to answer my phone and operate my TV.
Although it can take some time to blink in words and phrases in the moment, it will restore a good deal of my verbal independence, and enable friends to communicate with me again. For someone in the advanced stages of living with ALS, this machine is a God send! It will return freedoms, like changing the TV channel, for which I have had to depend on others for some time. It will also eliminate a good deal of frustration and energy drain on my part and those trying to communicate with me by reducing the need for constant repetition of what I am trying to say. Having recently lost my ability to safely taste most of my food, the restoration of these freedoms will be particularly sweet! Hopefully, the device will arrive within the next few weeks. We are looking forward to it with great anticipation and excitement.
The old saying, “when one door closes, another opens” comes to mind. What experiences have you had that remind you of this phrase?