Living with ALS: Optical Writing – a new eye-pad innovation
CHARLOTTE: The world is dominated by geeks these days. Who knew? Everyone thought it would be the Russians or Chinese or Islamic extremists and, in the final analysis, it was pocket protectors that did us in. Though far from being a candidate for “Nerdville”, my bout with ALS is dragging me unwillingly into the 21st century regardless of how much kicking and screaming I do. The next innovation – optical writing.
I now possess a bed that decides what is the best sleeping position for me during the night and then fills up with air to hold me in place. It’s kind of like being a gigantic human blood pressure test.
I also have a motorized wheelchair that usually gets me from Point A to Point B efficiently with minimal effort. It’s a moody little machine, however, and if it decides it doesn’t want to work at any given moment, it’s liable to take off on its own and do whatever suits its mood at the time.
Weighing in at 450 pounds, the machine thinks it’s the Incredible Hulk of the disability world.
At times when it has gone on one of its tirades, it has been known to wipe out three or four tables in a restaurant with ease. Fortunately, so far there have been no injuries but Sherman (the wheelchair tank) & Mr. Peabody (his ALS Operator) have ruined more than one meal with our out of control maneuvers.
Now we are moving into, hopefully, less dangerous, but certainly no less challenging, uncharted waters.
Seeing a new way to communicate
To tell the truth, I have never seen “eye to eye” with computers. We just don’t get along. It would be nice to be able to call it a love/hate relationship but the differences are just too deep. Now suddenly, the rules have changed again, as ALS has worked its ugly, unrelenting horrors once more.
One of the best pieces of advice anyone gave us came in the early days of our ALS ordeal when we were told to always prepare for the worst in advance. Anticipating each phase of ALS and knowing how to deal with it is a key to a better quality of life.
It doesn’t eliminate the frustrations, but it goes a long way toward minimizing them.
So now I have embarked on my optical writing stage whereby I am composing this article using my eyes instead of my fingers. Though my hands remain relatively strong and flexible, the ability to reach certain letters, symbols, and numbers on my keyboard is frequently challenging.
With the new system I simply move my eyes to the on-screen letter, number or function I desire and it automatically registers. While that may sound simple in theory, it is a bit tougher in reality. However, it’s mostly a matter of going through the learning curve.
I call it “eye for an I” technology. And though the process is slow, it does have its advantages.
The first thing I have learned is that the closer I am to the computer screen, the faster and more accurate the system works. The primary difficulty is being able to manipulate the chair into a position that is both comfortable and compatible with the on-screen set-up.
ALS means recalibrating life
Since my position changes each time I use the computer, it is necessary to re-calibrate the range of motion for my eyes with each session. In fact, over an extended period of time, I now know that in order to be as efficient as possible, I must re-calibrate at least once and possibly twice during the course of my writing.
The calibration process is actually very simple. The user sits in front of the computer in his or her writing position and stares at the screen.
When the computer is ready, it tells you to move your eyes to specific points on the screen to establish nine different control places.
Once you have entered the information, the screen tells you which points are strongest and which are weakest. You can then either completely re-calibrate to adjust or you can simply adjust the two or three spots that are weak.
Following that, there’s a toolbar on the side of the screen that allows you to operate the computer.
Using simple icons, the user stares at the on-screen mouse and when it lights up, he moves his eyes to whatever folder he wants to open. Once it clicks, he repeats the process just as he would with a mouse.
For writing purposes, there is a QWERTY keyboard
Since I am a touch-typist, locating letters is not difficult. I gaze at a letter, listen for the click and move on to the next letter.
Of course, the learning comes in when the writer must figure out how to do capital letters, italics, bold letters and change fonts among other things. However, figuring that out is just, more or less, a matter of time until it becomes second nature.
The negatives are speed, re-calibrating during a session and watery or tired eyes.
On the positive side, however, the system is considerably more comfortable than the traditional method of writing and, in the long run, it’s actually kind of fun as well as challenging, rather like playing a video game with your eyes.
The nemesis becomes a friend
I still hate computers but this “eye-opening” technology has reduced some of the mental and physical anguish ALS has thrown my way. I seem to recall when I was growing up having a cross-eyed teacher who was fired because she couldn’t control her pupils! Imagine what this technology could have done for her career.
Next stop is a “sit-to-stand” device which should help to get out of bed much easier. Since it looks very much like a dolly for humans, I plan to call it my “Hello Dolly.”
In the meantime, I now return to my new writing system on my new “eye-pad” deluxe.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor ia an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is also the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up