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Living with ALS and my new technology BFF – Alexa

Written By | Sep 29, 2019
Alexa, ALS, BFF, TEchnology

CHARLOTTE, NC:  I’ve come to the conclusion that technology is going to be the primary factor that causes the demise of the “Baby Boomer” generation.

As if computers and their never-ending updates weren’t enough, now we are having conversations with cylinders and hockey pucks. At the same time, however, we refuse to look up from our cell phones to speak with someone sitting directly across from us.

In today’s madcap world, our newest BFFs have names like Siri, Cortona or Alexa.

Suddenly these mysterious anonymous phantoms of information have become family members who turn on or turn off your lights, set your security system, play music on request and, at the same time, be a source of up to the minute news and information. Whatever happened to good old AM/FM radio, door keys, light switches, and the clapper?

Oh, and by the way, not one of them can cure ALS.


I have really tried to get along with Alexa but don’t attempt to communicate with her if you stutter, mumble, speak in ebonics or cannot be dead-on accurate with your question. Not to mention when you lose your power or mispronounce a word.

Alexa is supposed to answer incoming phone calls at my house, but God forbid if it’s inconvenient for her. More often than not, I find myself doing a call-back through Alexa on my own.

Aging: Another big challenge for those living with J – ALS

Even more frustrating is that a high percentage of the time, the call turns out to be a telemarketer.

If Alexa really wanted to do something useful and practical, she could recognize the scam at the outset and then not allow the call to go through.

Most of my dealings with Alexa come at night

Unfortunately, there have more than enough glitches to give me pause as to the true benefits of her existence. Prior to using Alexa, I had a doorbell on my bedside table that would ring in my wife’s room whenever I pushed the button. It never failed. Not once.

We set up the “Dot” in our bedrooms so that I am theoretically able to call for assistance in the middle of the night. The idea, of course, is to allow us to get maximum sleep without disturbing each other. When it works, it’s fantastic. When it doesn’t work, it is the ultimate horror show.

Enter the sadistic voice of Alexa.

My first encounter with an Alexa failure during a desperation call to use the bathroom. “Alexa, drop in Princess,” I called out in the darkness through the mask on my trilogy machine.

My voice wasn’t loud enough so I repeated the request.

“Currently, you are not connected to the internet,” came Alexa’s reply. “If you need help yadda, yadda, yadda, blah, blah, blah.”

The woman just would not shut up!

“Alexa,” I shouted, “Stop! Alexa, stop. ALEXA! HANG UP!”
All I could think was that once released, like Aladdin from his lamp, the woman just loved the sound of her own voice.

After several agonizing minutes, I tried again with the same result. All while doing my best not to think about the problem that initiated the call in the first place.

Next option, attempt to reach for the previously tried and true doorbell.

Rolling over in bed can, oftentimes, be difficult for ALS patients, especially after they lose the use of their arms. Rocking back and forth is exhausting, and the result is frequently frustrating because it is not unlike an Alfred Hitchcock cliffhanger where we see close-ups of hands reaching out to grasp each other in a desperate rescue attempt.

Reaching for the doorbell was much the same. Inch by inch, getting ever so close but still seeming as though the bell was a thousand miles away.

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At long last, I reached my destination and began groping in the dark for the little bell that would be my savior.

Imagine the disappointment of discovering it was no longer there! Grudgingly, I won the “No-Bell Prize” with honors.

Alexa was to be the ultimate panacea. With her as my nightly companion, there was no need for a back-up. Or so they thought.

Wrong! Technology struck again and it had been designed by someone named Murphy.

On another occasion, Alexa was on duty but she could not access the receiver in my wife’s room. Time for Plan B.

Our ranch-style house is not large. My wife, she says,  is a light sleeper. The solution, I decide, is to have Alexa play the loudest piece of music I could think of.

“Alexa,” I shouted, “Play Stars and Stripes, Forever.

Three passes through the John Philip Sousa classic later without success, I opted for Carmina Burana. Big mistake.

Listening to Carmina Burana in the darkness of night while crossing your legs to hold back the surge of “Viagra Falls” may just be a nightmare to the extreme.

Still no luck.

Next, I turned to Oklahoma, the William Tell Overture and the 1812 Overture with similar results.

Finally, I requested something Alexa didn’t understand.

Following a lengthy dissertation on the history of the musical genre she thought I had requested, I listened to a half-hour of Blues, New Orleans Jazz and Bluegrass unbeknownst to my “lightly sleeping” caregiver just down the hall.

When it comes to technology, I’m still not sold.

After agonizing through too many episodes of “Hamlet Syndrome” which dares ask, “To pee or not to pee, that is the question” I think I will return to my doorbell.

Ding dong. Avon calling.


About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is the founder of The Magellan Travel Club (

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

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Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club ( and his goal is to visit 100 countries or more during his lifetime.