Do YOU Speak A-L-S-ky? (ALS Humor)

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Do you speak A-L-S-ky?

I do.

Of course, speaking A-L-S-ky was not on my bucket-list of new languages to learn during these - - my hazy, crazy, lazy retirement years.  Actually, I was hoping for something more on the line of say,  Italian.

But, A-L-S-ky it is, and as they say in Italy - - È quello che è (It is what it is).

My lessons in A-L-S-ky commenced about three years ago. That’s when my tongue began operating at half-speed. It’s actually a common and expected symptom of ALS. For example, I use a “bar-rush” for my hair,” ask for “a fawk and a sch-poon” at dinner and make sure that my “electric schk-ooter is fully chawged.” Obviously, I hear “I beg your pardon?!!” quite a bit now.

So, what’s the upside?

Don’t get me wrong, speaking fluent A-L-S-ky does have its benefits. Well, so far I’ve found only - - two:

Whenever we pull into the drive-through lane of our local fast-food establishment and encounter a squawking, mal-functioning speaker, I for some reason feel just like E.T.; who finally finds his lost alien companions; the squawking makes perfect sense to me! Just like a well-trained U.N. translator, I calmly relay the conversation back to my frustrated husband. “She SAID, do we want the order to-go, or to eat in the car?” Only what actually comes out of my mouth is, “Schee ZED, do we wand da orda to-go or to ead in da caa?”

You probably already can guess the limitations to that special skill!

The second and only other benefit to speaking A-L-S-ky involves telephone solicitors - - THEY now hang up on ME!

I remember one recent instance involving a fellow selling computer software; he apparently had reached the end of his rope for dealing with smart comebacks from irate folks rejecting his sales pitch. Dialing my number sealed his fate.

Me: “Heh-woe?”

He: (silence….)

Me: “I’m verwy sawry but I have ALS and…“

He cut me off: “Ohhhhh, heh-woe is it? Well, I can play that game too!   …HEH-WOE back to you, Missy! …Nyah, nyah, nyah!”

Click - - and then, he hung up!

Answering the phone in A-L-S-ky also helped limit my time spent on the phone with pollsters during our recent (and volatile) election season. Yup, they all hung up on me too.

…And the downside?

What I call A-L-S-ky, is officially known as dysarthria and defined as slurred, slow speech with a nasal tone and imprecise pronunciation of consonants. It occurs in 80% of all ALS patients. I figure, with 450,000 ALS patients currently worldwide, 80% makes it 360,000 of us - - almost a good-sized city - - all struggling with dysarthria!

Of all the various symptoms of ALS (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) research has shown that losing the ability to speak is frequently identified as the worst aspect of having the disease. That’s because we humans take our ability to communicate for granted and losing it can erode the quality of our lives. We become mere spectators; socially isolated and as noted in my previous post, "How to Live a Balanced Life...",  isolation leads to feelings of hopelessness, which in turn can bring on suicidal thoughts. So it’s vitally important that we continue to stay involved, connected and participating in life as much as is possible.

So, what are the options?

Like so many others who live with dysarthria, I’ve learned to compensate by adding in extra body language and facial expressions to help listeners understand what I’m trying to say. Short of forcing folks into an all-out game of Charades, I’ve also learned to edit what I say; reducing colorful explanations and in-depth opinions to simple concepts requiring fewer words. Often I feel as if stuck in in a badly captioned foreign-language film where on-screen we see mouths moving and much arm waving while down below the movie’s captioning simply reads: “Yes.”

In days of old, we’d have to carry around chalk and a chalkboard or paper and pen to scribble down questions and answers for others to read. Now, we have apps that transform a computer, tablet or smart-phone into a text-to-voice device. Just type out a word, hit the “play” tab and let the device do the talking. Hmmm, I wonder…aren’t we still just using a fancy version of the ‘old pen and paper?’

What about this new voice-activated technology? I’ve read it’s the wave of the future, soon to become the dominant way we interact with our devices. Seems the whole world is fed up with typing on keyboards and tapping on screens, “Just talk to it!” the ads urge. But what if we can’t talk? Or if we can, only A-L-S-ky comes out?

My phone’s “Voice Search” app is hopeless when it comes to understanding A-L-S-ky.

I ask: “Whads the bes Bah-Bee-Que wes-wrandt in Tooo-son?”

It answers with: “Here are your selections for - venice bars in Tulsa..."

Didn’t the folks on Star Trek have it all figured out?

Yes, Captain Kirk’s team had the Universal Translator; a hand-held device that translated alien spoken languages in real-time communication. And for us, the future has finally arrived!

Real-time translation technologies and software is popping up everywhere. Apps translate up to 90+ languages, Skype now offers real-time translations of eight languages (more to be added) and hand-held devices are emerging. Here’s a fun and impressive one developed by Logbar in Japan, that debuted just this year - - the “ili.”  http://www.iamili.com/index.html

Now you’d think an enterprising inventor-entrepreneur would see the potential sales opportunity in 360,000 customers all speaking A-L-S-ky, all primed to purchase a hand-held real-time translator that recognized their particular language!

But wait - - News Flash! - - Soon to arrive is a new addition to our family home!

Alexa, is her name. Yup, we are joining the 4 percent of U.S. households who already have an artificial intelligence powered personal assistant. Although I’m disappointed to read it only knows one language - - English, I am heartened to read that it quickly learns its owner's voice inflections, especially owners who speak English with a heavy... foreign... accent!

I can’t wait for my own “First Contact” moment - - when with bated breath I say - - “Alexa… do you speak A-L-S-ky?

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What happens next?

 Read "Lessons Learned from Echo Show" for the conclusion to this story!

DagmarMunn
ALS ansWellness Blogger

"Only through communication can human life hold meaning."

Paulo Freire

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