Battling ALS: Creatively thinking outside the box

Each day with ALS is a transition. A new learning experience. Morphing from being able to do simple daily tasks into partial dependency is one of the hardest.

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CHARLOTTE, NC, August 13, 2017 – Life has become a never-ending series of vignettes. Each day is a transition. A new learning experience.

Morphing from being able to do simple daily tasks into partial dependency on others is one of the most difficult adjustments an ALS patient must make. Those who are caring and willing to help are there for support, but there is always that thought in the back of your mind that you are imposing upon their generous nature.

Places, where crowds gather such as airports or parties, can be hazardous. I have learned that the best way to get around that problem is by using a wheelchair which is much like Moses parting the Red Sea.


Battling ALS with an electric wheelchair and retropulsion



A push chair is good, but I have discovered that my electric wheelchair gives me more flexibility and freedom. Since I am still learning how to drive the thing, there’s a “bull in the china shop” aspect to it that gives me even greater power to move the masses.

That said, I have to admit there are times when I imagine myself as an ISIS terrorist using a vehicle to run into crowds.

On the other hand, I often feel like the little silver ball in the Labyrinth board game we used to play where the player keeps tilting the box to keep from falling into the abyss.

At home, my chair conveniently parks in one corner of the room where I have become accustomed to using it as my personal refuge. It tilts, elevates and reclines so that I can get my body in just about any position that is comfortable.

With the PGA golf tournament in town, I have taken to watching more golf than ever before. As a result, and considering my ultimate plight, I have nicknamed my spot, much like Sheldon on “Big Bang Theory.”


Battling ALS with John Grisham and Southern cooking 


Whenever necessary I simply retire to my personal “Amen Corner.”

As my handwriting has deteriorated to the point where I now feel qualified to write prescriptions, I have developed a game to challenge my brain as well as my hands. When the extra large Sunday crossword comes out, my goal is to complete it without making a mistake.

The challenge being that I must write legibly in order to show that I have succeeded in my quest. So far I have finished a few but not without some nasty write-overs.

Getting out of motorized vehicles has presented new difficulties as well. Reaching for the door handle on the car can be a bit scary at times for fear I might fall out of the chair landing onto the pavement.

Getting out of a car is simpler than getting in because I am able to use my feet instead of my hands for leverage. The trick is to catch the top of my foot under the door and pull my way to freedom using my legs.

I used to think that athletes were the only people that had colorful nicknames like A-Rod and Big Papi but I have come to the realization that every industry has its own set of names.

As we have progressed in the process of adapting our house for wheelchair access, we have had several contractors stop by to suggest ideas about the renovations.

The first person to visit was a black man named “Cotton.” Given today’s PC climate that name was at first a little tough to grasp but “Cotton” it was.

Next in line was “Skeeter” who mentioned that he had done work for the VA in the past and told us to contact a chap named Gutschenritter.

“Just ask for ‘Gute’,” said Skeeter. “He’ll take care of it.”

Thus, from that moment on, our lives are now temporarily in the hands of Cotton, Skeeter and Gute, but give it a week and it will all change.

In conclusion, the absolute best thing that has happened for me is that I no longer get fussed at for leaving the toilet seat up and, in many cases, my female friends put it up for me after they use it. Now that’s compassion!

Now that’s compassion!

And so as the Sonny and Cher song says, “The beat goes on. La De Dah De Di, La De Dah Di Dah.”

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

Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)

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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