Reddit AMA about ALS and Assistive Technology

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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.

Comments

sua may tinh's picture

sua may tinh

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Anonymous's picture

this is a great opportunity

this is a great opportunity to wrtie great modules for Drupal. This idea of online work can be easily used on this link.

Iftekharul pias's picture

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Jeff Kang's picture

Mass-market eye-trackers

"It is simply unforgivable that the price tag on these machines is approximately $20,000 when, off the shelf, suitable hardware is available for $2,000.
Our foundation is working with established companies like Sahara Tablet Kiosk, which makes my tablet, and Tobii, which designed my eye tracking, to create less expensive, more powerful machines. We can outfit someone for $6,000 rather than $20,000, which is progress."

http://sportsillustrated.cnn.com/nfl/news/20130617/steve-gleason-monday-...

Both the Eye Tribe (it's an additional $1 for Android device manufacturers to integrate) and EyeCharm (it's a $60 attachment to a $99 Kinect) are extremely cheap compared to Tobii (the Tobii REX is $1000).

I believe that the Eye Tribe SDK, and the EyeCharm SDK will support input from any other eye tracker. Extensions and applications that you have developed will be compatible with the more expensive eye trackers, such as those from Tobii and SMI.

TalkingEyes: Eye-tracking and ALS Google+ Community: [https://plus.google.com/u/0/communities/103103072435695270907](https://plus.google.com/u/0/communities/103103072435695270907)

Also, please consider one day working with something like Fleksy. It might help make eye-typing much easier and faster.
“Fleksy is a state-of-the-art text input system so powerful that you can type without even looking at the screen.

For the first time ever, sighted, visually impaired and blind people are able to quickly and easily type on touch screen phones and tablets.”.
Since some people can only afford the cheaper eye-tracking solutions that I mentioned, they will most likely have to deal with less accurate, and more fluctuant control. Any software that might help compensate for unstable movement would be great.

The cheaper, mass-market eye-trackers might be insufficient for people with ALS, but more developer support for eye-trackers in general should help the rest of the eye-tracking products.

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.