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Living with ALS and a designed for sleeplessness, “sleep number” bed

Written By | Jun 9, 2019
ALS, Living with ALS, Sleep Number, Bed, Bob Taylor


CHARLOTTE, NC:  There is nothing more important to our health then healthful sleep.  Something that becomes more and more difficult with ALS.  But a new “sleep number” (not the retail, but the hospital version) bed is supposed to help.  Read supposed to help.

A new bed delivered

Sometimes it’s difficult not to have a sense that every day is Christmas with ALS. Almost every afternoon the doorbell rings and there stands the UPS guy with a new package. “Thanks, Bill. See you tomorrow,” and off he drives in his brown truck to make another delivery. It happens so often these days that we’re on a first name basis.

Technology, however, is not necessarily the panacea it may appear to be at first. The other day the phone rang and a voice at the other end of the line asked if I would be home for the next hour so they could deliver my new air mattress.

I told them I would definitely be home. After all, where would I be going?  Nonetheless, I explained that I had no knowledge of a new mattress. It didn’t matter. Santa was at it again and, next thing I knew I would now be sleeping about six inches closer to God every night.

On the surface, the idea sounded great.

The problem was that I quickly discovered I was having difficulty staying on the surface. Elevated higher than I had been before, getting into bed, I was now sliding off the edge. There is no way to stabilize the process of getting into it.

The other new feature was a brightly colored box at the end of the bed which could be programmed to adjust the mattress in the middle of the night while I was sleeping.  Again, a good idea that didn’t really work, at least for me.

My crib’s new crib

The regression continues. I am living proof of “Benjamin Button Syndrome” where life is returning to the helplessness of being a baby. The street term for a home is “crib.” Having added another metal barricade to my bed to keep me from falling to the floor in the middle of the night, I am now officially sleeping in my “crib” crib.

The primary problem with the new bed is starting out in one position and then, as the night progresses, the machine automatically adjusts to the extent that I am no longer in a position where I can shift without considerable effort.

Read Also: Living with ALS : Working around “workarounds” in a new power wheelchair

If I attempt to roll over on my back, the mattress returns me to my previous position. Because it knows how I sleep comfortably. After long sessions of maneuvering, when I am finally able to achieve some level of comfort, that’s when the menace of itching begins.

And so the process resumes to somehow find a way to manipulate my dead arms into a position where I am able to attack the offending nemesis.

Then back to sleeping position #2 and hopefully a total blackout before the itch returns.

A hospital bed by any name

Being a hospital bed, there is a control at the side which allows me to raise and lower the mattress into a more comfortable position. That, of course, uses the assumption that I am capable of locating the control and, if so, getting it to a place where I am able to operate the buttons.

The trick is, and here’s the dirty little secret nobody thought about, when you raise the bed, your hand moves forward and you quickly find yourself in a place where the buttons are out of reach. Even though they may only be just an inch away.

The other difficulty lies in the fact that raising the bed also moves me further away from the night-call button for assistance, meaning that once I make my initial move, and scratch the elusive itch, I could be trapped in a stationary position for the duration of the night.

Creative use of technology does not come to the rescue

One night I even resorted to calling my Amazon Dot to the rescue, hoping I could arouse my wife with some loud music.

“Alexa,” I mumbled through the shroud of my C-Pap mask, “Play “Carmina Burana.'”

Read Also: Living with ALS: The fragility of life, a metaphor for Monarch butterflies

It was the loudest piece of music I could think of at the moment. Unfortunately, Aexa didn’t hear my first plea so I repeated the request twice.

When Carmina didn’t achieve the desired response, my next choice was “The Stars and Stripes Forever” which I listened to twice, again without results.

In the end, I spent the remainder of the night in my “crib” attacking my bouts of itching by attempting to pretend I was a “scratch” golfer. (Note: That didn’t work either)

All of which goes to show that sometimes even the best of ideas are not always practical.

In the meantime, I am now up to 3,724 on my new personal “sleep number” bed. However, I will continue to persevere because, as they say, ALS NEVER sleeps.


About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award winning television producer/reporter/anchor. However now he focuses on writing about international events, people and cultures around the globe. And ALS.

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.