Al Daly

My name is Al Daly. I have ALS, a progressive neurological disease, and can no longer communicate with my own voice. During the earlier stages of my disease, CAYA loaned me an iPad with the text-to-speech app called Predictable, which allowed me to type out the words that I wanted to say and then the iPad would speak it for me. As my disease progressed, I could no longer use my hands and fingers to type. I am now also using my eyes to type and it is so much faster.

CAYA and my SLPs have set me up with an eye gaze device, called the Hiru, which scans my eyes using infrared technology to allow me to move the cursor on my iPad and type out this story. I use my eyes to move the cursor and my left thumb to activate the next step.

Before my diagnosis, I was not a person who talked a lot, but I would make my point with a few words. The Hiru has made that possible again.

I have some experience working with computers which has helped a lot, but I am still learning many new things: Like calibrating the eye gaze device for different light conditions, how to navigate various websites and how to activate a box within a box. Lol. It was tough at first, but with the introduction of the “snap to item” feature in iOS 17 it became much easier to navigate the keyboard and the desktop with my eyes.

I also really enjoy working with the Predictable software. The ability to set up different phrase categories makes finding the right word at the right time possible. I even have a category titled “bad jokes” (and they are!). I use the Hiru mostly for conversation and texting, as it is critical for letting people know what I need in terms of care and how I’m feeling.

I can also use the Hiru and Predictable to help me speak to digital assistants like Siri, so I can activate smart plugs. I have saved phrases such as “Hey Siri, play one man guitar” and “Hey Siri, turn the music off.” And I can even use Predictable to ask it to turn on my suction machine or my TV.

I have had a ton of help to set these things up for which I am most grateful. The SLPs have been there from the start, from mounting the device on my wheelchair to learning the ins and outs of the Assistive Touch program in Apple using my hands and then my eyes. I also want to thank CAYA for making it all possible by loaning me the iPad Pro and Hiru.

I am lost without these devices. I would need constant care just to figure out what I’m trying to say. Losing my voice is the most frustrating part of ALS, so far. Now I have a way to communicate again.