Sharing wellness and motivation for persons living with ALS, MND (Amyotrophic Lateral Sclerosis also known as Lou Gehrig's disease) their caregivers, family and friends! Because - - You CAN be WELL while living with ALS.
Of course, speaking A-L-S-kywas not on my bucket-list of newlanguages 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
Don’t get me wrong, speaking fluent A-L-S-kydoes
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-kyinvolves telephone solicitors - - THEY now hang up on
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: “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,
Click - - and then, he hung up!
Answering the phone in A-L-S-kyalso
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
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:
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
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