May 12, 2017

The Eyes Have It

Eyes wide open It has been some time now since I last managed to create anything for my blog. Longer than you might believe if you are one of the befuddled few who ran across The Pelican Dylan. No, it wasn’t actually written in a burst of late-winter, ahem, “creativity.” It was written last year (November?), shortly after the Bard of Hibbing won the Nobel Prize in Literature, and quickly filed away as a failed idea whose time had not yet come (and was unlikely to arrive anytime soon).

My decision in February to publish it was not really evidence of a slackening of Bachblog’s lofty standards so much as it was a desperate attempt to prove it was not quite dead. (I was and am not quite ready to lose readership to the likes of The Cereal Blogger.)

So why the desperation and the sad lack of blogtivity? (And why, some of you may wonder, have you stopped answering email and ranting on Facebook about our submental Commander-in-Chief and his fascist administration?)

I have been quiet because, almost a year after ALS took away my ability to write using dictation software, it has come hard after the functionality remaining in my right hand. Without Dragon NaturallySpeaking’s help, I have been using the Bluetooth-enabled joystick on my wheelchair to move a cursor over a custom onscreen keyboard whilst clicking two silver dollar-sized mouse buttons with my feet.

Sounds clunky, I know, but I was pretty effective at it for awhile and even managed to create some content I didn’t feel embarrassed to publish on my blog (the crossword puzzle Themeless, but Dark is certainly worth the price of your Bachblog subscription). But now my right arm is too weak to do much mousing with the joystick.

Alas, all things must pass.

George was a thing

Eye got this

So here’s my excuse for running off at the mouth, er, eyes like this. I am writing today because I can. And because I need the practice. And because it is fun (again) to use a computer to write. The real reason I stopped playing with my blog, posting on Facebook, and keeping up with email is not that my disillusionment with the sad, perilous state of our democracy has me down^[1], but because ALS has made it just about impossible to use my computer in the way I have in the four-plus years since I lost the ability to type. It was a good run. But I am onto what’s next.

The Dude abides What is next is eye gaze technology. I use Tobii’s Communicator5 on a Microsoft Surface tablet. It’s a very robust system. As reluctant as I was to face this next step in my evolution, I have to concede that I am very happy to have it available now that reluctance is futile. If I want to communicate at all during whatever time I have left—and you know I do—this is how I will do it. And I refer not only to writing email, Facebook updates, and blog posts. I am quickly losing the ability to speak—it isn’t only the Dragon who is unable to understand me now. If you have been around me recently, you know I rely on Joann to act as my interpreter. She is, at best, only able to understand about half of what I say. Even my daughters, whom I see at least a few times a week, cannot understand me more than a third of the time (sadly, many of my wittiest quips go completely unappreciated). Infrequent contacts don’t stand a chance. Like the desecration of Lebowski’s throw rug, this will not stand.

I am still tweaking my Communicator5 voice through software settings and may yet manage to improve its quality, but it will always sound a lot like my bastard child with Stephen Hawking. The good folks at ModelTalker created it for me based on my recordings of 1600 sample sentences way back in 2010. Then when I contacted them six years later they were willing and eager to answer my installation and configuration questions. This service and software is entirely free.^[2]

Here in my new 21st century voice is a reading of one of the best-loved poems in the English language:

A little bird

An ALS update six-plus years in

I missed the opportunity to mark the six-year anniversary of my ALS diagnosis on February 15 with another naval-gazing “lucky to still be here” post (see last year’s Five Years In). There is nothing to stop me now, but I have little appetite for a full-on gaze at the umbilical knot. Maybe later, because in addition to what can be understood from the above, changes have fairly piled up. Until later then, as briefly as I can, some ~~highlights~~ stuff:

No hospital, please! I am fully recovered from a recent five-night stay in the Minneapolis VA hospital. Nevertheless, we have had to make some changes. I am now receiving hospice care. The next time I come down with a bad cold, I will be treated at home. That’s a big perq. Bi-weekly in-home massages are another. Hospice, by the way is not a last-month-of-life thing. Not even last-six. One PALS has been enrolled for three years in the same Fairview/UofM program as I am.^[3]

We have had some difficulty finding good, reliable caregivers. Part of that has been bad luck (our perfect caregiver broke her foot—badly—more than three months ago), and part of it is how our country’s screwed-up healthcare system undervalues caregiving. Joann was forced to take an FMLA absence from her teaching job in the middle of the spring semester. Worse, we have had to contemplate her taking off the entire 2017/18 school year. Right now (knock on wood) we are optimistic about our situation in the fall, and we do not anticipate having to do so.

My breathing is holding up well, though I am now using a Trilogy BiPAP to sleep (all night and, often, during naps).

I continue to feel quite lucky to still be here.

—

Notes

Which is not to say it does not have me down. It does. As it should any sane adult in this country. [^]
I really can’t say enough about the helpful people working on this project or about the value of this service to PALS. I made a small donation and, through my speech pathologist at the VA, will encourage any newly-diagnosed PALS I can to take advantage of this by voice-banking as early as they can. Using a better microphone and recording conditions than I did will produce a better result. [^]
What I thought I knew about hospice is all wrong. My enrolling does not mean I have one foot in the brass urn. Really. [^]

Recent ALS Bites:

DATE	TITLE
02/28/2019	Unhappy Anniversary
05/12/2017	The Eyes Have It
08/04/2016	YFALS National Corntoss Challenge
07/18/2016	Scopolamine Blues
03/06/2016	Dragon Me Down