Rant

September, 2021

Before I drag you down this week’s harangue, a public service announcement for those that want to go the extra mile or two to battle ALS. On October 23rd the ALS Association Golden West Chapter is holding its annual Walk to Defeat ALS. Because I have a hard time cutting and pasting links, I’ll just invite you to go to the website of the ALS Association Golden West Chapter so you can learn more about this impressive event to help pALS and research.

Now, back to our regularly scheduled program.

Because of ALS, I have been unable to speak since about February of 2020. Which is a really long time. In that time I’ve been aided by my not always trusty tobii Dynavox communication device.

Let me digress into an ungrateful first world whine about eye tracking technology. I am profoundly appreciateive of eye tracking technology. Without it I would be unable to torment you with this blog week after week after week. Like most things technology, it is frustrating when you often need it to work, such as when you are late in posting a blog. It can be so frustrating that when the device does finally start to work, all you can write about is the fact that your device doesn’t work. Which is a nice way of saying that what follows is a childish rant and a complete waste of your time

The key issue is glare. This full spectrum splash can play havoc with the lasers that track the movement of your pupils even when the device is properly positioned and calibrated. Glare, for me, comes from windows, both in walls and in ceiling. It also comes from my anti-glare, rimless, oversized glasses, and the shiny oak floor. Due to the in ceiling windows, the angle of the sun makes such a difference that a spot that had you creating emails at warp speed the day before has you stalled out today. It’s yet another reason I pray for rainy days.

Glare causes the lasers to track your pupils inaccurately or, sometimes, not at all. Ronnie, my caregiver, sometimes automatically moves my chair out of the glare. Sometimes it even works. Sometimes it doesn’t, which means resorting to reading the paper and checking back every two minutes to see if there has been a positive change in the eye tracker glare continuum. Which almost never happens, and so I keep checking back in an endless loop of self induced frustration. Argghh.

Sometimes the issue is mitigated by changing the backward tilt of the LazyBoy on Wheels. My caregivers have gotten so used to my desire to tilt back that it’s one of the twenty questions they ask after I start screaming at the screen. The tilting question is up there on the list, although not as high as “Do you need to pee?”. It’s a good thing I can only tilt back so far or I’d be upside down.

And while I’m ranting, eye tracking makes your eyes really tired and sore. And it makes your teeth itch.

There are some prototypes in experimental use that allow communication by tracking brain activity. Two that I’ve heard about require chips to be inserted under the skull and have a really steep learning curve. An effort, sponsored by Google if memory serves, seeks to use facial movements to trigger communication, although I wonder how useful that will be for us pALS who have all but lost control of our face.

OK. End of rant. I told you reading this blog would be a total waste of your valuable time. Still, it felt good to get that off my chest. I could whine more, but I’ve already tried your considerable patience. Besides, my eyes hurt.

See you next time.