Reddit AMA about ALS and Assistive Technology
ONLINE RIGHT NOW ON REDDIT: http://www.reddit.com/r/IAmA/comments/1glbmg/iama_chief_assistive_techno...
On Tuesday, June 18, at one o'clock EDT, I will be on a panel for an Ask Me Anything (AMA) on Reddit - http://www.reddit.com/r/IAmA/ - The topic will be ALS and Assistive Technology.
So why should you attend?
First, it's only an hour or so, and it'll look better if more than one or two people show up. Besides, it'll be a great opportunity to spend your lunch hour with me. Being online simply makes it that more simple.
Next, if you have any pressing questions, such as how do you manage to write awesome modules for Drupal when your hands are completely useless, then this is your opportunity!
My qualifications: I was diagnosed with Lou Gehrig's Disease about two years ago, just before my newborn's first birthday. At first, my arms and hands were weak, so I purchased a magic touch pad and keyboard for the mac. By September, I needed to supplement this with Dragon Dictate (Naturally Speaking on the PC). This combination served me well until last year, when my hands became too weak to control the touch pad, so I began looking at eye gaze solutions.
The first iteration was a custom built eye gaze tracking system built by my father, from an open source concept over at http://www.eyewriter.org/ . It was cumbersome and difficult to calibrate, however, so beyond a couple of proof of concept demonstrations, I didn't really use that much.
Then about July I got a head tracking piece of software for the Mac, which served me well for a few months. However, it was doomed from the start, as my neck strength was already failing.
So in September of last year, I finally got a Tobii PCEye, and used it to control the mouse, while I continued to use Dragon to dictate code and emails to the computer.
Finally, this January, my voice had degraded to such an extent that I gave up struggling to keep training and retraining Dragon, and now use the Tobii, in combination with Dasher, an open source word predictor for use with eye gaze systems, to control all aspects of the computer.
I'm planning to get a stand alone Tobii system next month, which will allow me to speak when I have lost that ability entirely, using my own voice banked with Model Talker, and have also begun a trial using a brain computer interface (BCI) for the possible loss of eye movement in the future.
By far the best thing I have done during the course of this debilitating illness has been to try to stay one step ahead, by training myself to use the next bit of software or hardware before I actually need it. I believe that where medicine has completely failed patients with ALS, technology has taken up the banner, and offers the only hope.
So join me Tuesday at 1:00 for an AMA on Reddit, to have a chance to chat with me live. I'll post the URL here and on Twitter: http://twitter.com/aaronwinborn soon before the session starts.