Living with diabolical ALS and the misadventures of a power wheelchair
CHARLOTTE, NC: Someone asked me once to describe ALS in one word. After a long pause, I replied, “Diabolical.” One thing I’ve noticed during visits to the ALS clinic, which is reminiscent of a NASCAR convention for wheelchairs, is that most ALS patients are optimistic in their approach to the condition.
That may be a false impression that disappears when they leave the building, but, my sense that of a positive attitude among most ALS victims.
As one gentleman said to me one morning,
“When life gives you limes, find some tequila and salt.”
Stress is a common derivative of ALS that is also a catalyst for acceleration. That said, it’s virtually impossible to “Always look on the bright side of life” as expressed by the Monty Python cast in the film The Life of Brian.
Part of the ALS learning curve is discovering what works and what doesn’t to make life simpler.
Often the seemingly best solutions are the worst and vice-versa.
Case in point is our power wheelchair which looks like the ideal answer for most of our ambulatory needs. Not necessarily.
We now have a handicapped accessible van which has been adapted to accommodate my “legs on wheels” approach to life. After months of driving the chair up the ramp to lock it into place, we discovered that the treatment was often worse than the disease.
The disabled operator of the chair (me) has no line of sight or visible reference point to lock into the onboard bracing mechanism. Which meant that my always stylish, well-dressed wife would find herself kneeling on a copy of the Paul Theroux book The Pillars of Hercules (a seemingly appropriate title upon reflection) as she guided me into the van.
On any given outing the process could take between 5 and 20 minutes. Not exactly the means for making a speedy getaway.
Getting out of the van was quicker, but considerably more dangerous as the chair would frequently lurch forward to unlock, often causing my feet to be potentially crushed against the van’s sliding door or the chair to feel as though it was going to fly off the ramp.
Ironically, the first two times after we decided to quit locking the chair in, it slid directly into the mechanism for which it was designed with ease.
If you have never seen a power wheelchair close up, the operative word is “power.” There have been countless times when I was certain that my chair was designed by the Marquis de Sade.
ALS affects its victims in different ways, which is one reason it is so difficult for researchers to find solutions.
In my case, my arms have become virtually useless and I am no longer able to hold up my head without a brace. Only recently, three years after diagnosis, my legs decided to join the party.
Without arms, controlling a power chair can be as hazardous at times as ALS itself. Most chairs have five speeds ranging from “tortoise” (slowest) to “rabbit” (fastest). Within each speed there are five more categories.
Around the house, I generally use speed setting three on the 2nd level, but for getting into the van, I go up a notch to number three.
One day after eating breakfast, while in the process of leaving the restaurant, I turned my chair to go down the aisle between two rows of tables.
A large group of men was having a meeting at the table behind us, reducing my path to a clearance not unlike going through one of the locks in the Panama Canal.
The great hash-brown induced wheelchair crash
After stopping and asking one man to move three times, I decided to chance it while he kept shoveling his hash browned potatoes into his mouth.
As it turned out there wasn’t enough room to scoot past. The left arm of my chair crashed into a table. Unable to release the grip on the toggle mechanism to stop, the power chair continued forward like a beast from Jurassic Park.
We were pushing the first table into another. Throwing chairs into each other. Finally coming to rest behind four other gentlemen who were now victims of a runaway power chair crash.
It should be noted that “hash brown” man never looked up and never stopped eating. Oblivious equals bliss.
That incident was just one of many, for which I have learned the true definition of the word “power.”
The chair doesn’t care whether its driver has ALS or not.
My wife has now become an even more defensive driver when we are together in the van. Sharp turns or urgent braking can result in minor repositioning. Ever mindful of that vulnerability, she is now a more cautious driver.
Even with our adaptive efforts, it is still common for my chair to get stuck on the access ramp of the van. In episodes such as this, my wife has to rock the chair backward and forward until it is finally free. While being ever so careful not to decapitate me on the roof in the process.
ALS patients aren’t the only potential victims, however. In our most recent van evacuation, my wife also injured her shoulder.
Fortunately, though challenges are daily, the good times far outweigh the bad ones when ALS unleashes its fury. And for that, getting up in the morning to greet the sunshine of a new day is well worth the effort.
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)
Editors Note: Support Bob’s GoFundMe to give him a hand up