The Adventures of ALS Boy

A middle-school math teacher documents his joyful life while battling the evil forces of ALS.

A Peek Behind the Curtain

All in the Blink of an Eye

All of this began with my voice. That was where the trouble began. My thoughts were clear and fully formed but I was unable to express them verbally as rapidly as I was thinking them. It felt as if I was speaking in slow motion and in a tone reminiscent of the late, great Andre the Giant (from the film The Princess Bride).

The next sign of trouble came when I noticed that I was struggling to play certain high speed runs on the piano. Take the intro to that A-Ha song from the 80's called Take On Me as an example. My normally nimble fingers were no longer able to perform that lick at the pace to which I was accustomed.

Then came the diagnosis of ALS or Lou Gehrig's disease. My voice went first. Within one year of my personal D (for Diagnosis) Day, any type of oral communication was gone. I maintained the ability to type and use my laptop for eighteen months after that until my fingers and arms lacked the strength to effectively utilize that modality any longer.

That's when I discovered the Dynavox and the Eye Max. In a nutshell, these two pieces of technology allow me the freedom and independence to communicate with those around me, both in person and online without moving a muscle.

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Briefly, here's how it works: The Dynavox is basically a normal computer with an amazing program attached to it. That program, called Alphacore, is how the user forms and speaks his words and phrases and sentences. The Eye Max component of the system allows the user to access the device by merely blinking his eyes.

Alphacore Medium. I use the Extreme version for more options.

This life-saving machine lets me talk to the people around me, browse the internet, create my blog and memoir, listen to music on last.fm, send inappropriate text messages to my wife, and generally plan for my taking over the world.

Basically, it provides me a means to participate in our modern society as independently as is humanly possible for a guy who can no longer speak or use his appendages in a functional way any more.

ALS Boy hard at work.

Btw, the neck brace is to keep my head steady while I gaze at the screen and blink. And the chair is super-comfortable!!!

Jason Picetti lived life with ALS by six simple words: Speech and movement compromised, spirit unaffected. He died on October 2011.

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