CHARLOTTE, NC, August 20, 2017 – ALS is a full-time job. It is also an effective weight loss program, though I don’t recommend it.
One of the things I most look forward to each day is meal times. Oddly enough, they are one of the things I least look forward to as well.
The simple task of eating is becoming a major workout. It’s like physical therapy on steroids.
A few months ago, Amber “the Gadget Lady” at the ALS center gave me an arm brace to aid in lifting my left arm so I can eat with less effort. The brace, which operates by tension from rubber bands, looks like some sort of medieval catapult for human appendages, but strangely enough it does work….some of the time.
The brace looks like a poorly designed robotic arm built by a kid with only half of an erector set. It is held together by pins and knobs and a brace that screws into a tabletop or a counter.
After using the bionic arm for several meals, I was in the process of taking a bite of food one morning when the pin connecting the arm brace slipped out of its socket. Suddenly my face was awash in bran flakes and milk while the tension in the rubber bands sent the metal appendages flying in multiple directions.
When I was diagnosed with ALS I was told there was no cure, but I honestly had no idea it meant I could be killed by flying breakfast shrapnel.
Since then I have taken to more or less eating food I can stab with a fork, and I am considerably more careful when I strap into my metal food dispenser.
Getting out of bed is another calorie killer. The task here is to somehow manage to get to the edge of the mattress without first throwing yourself to the floor. I call it the “Evel Knieval” method of getting up in the morning.
I have taken to using a rock and roll method of arising which is rapidly beginning to look like an impression of a live shrimp.
Like so many things with ALS there are good days and bad days. On a good day, getting out of bed is a relatively simple process. On a bad day, when there is not enough energy to “shrimp” myself to the side of the bed, I just lay back and regain my energy and feeling very much like a croissant. Thus far, I have managed to get up every day, though some days more quickly than others.
Thus far, I have managed to get up every day, though some days more quickly than others.
As my VA adviser explained during one of our early visits, the VA is really nothing more than an over-sized paper-pushing organization.
Talk about forms. There are forms for the forms.
Since starting the journey with the VA, my wife Jane, a former flight attendant who is organized to a fault, decided we needed to arrange a folder for all the papers and various disciplines we needed to address.
The book is now over four inches thick and the binders are straining at the weight of containing everything that has been filed.
If nothing else, the experience has magnified on a small personal scale just how much redundancy and waste there is in government. For example, I already have a walker and an electric wheelchair. That should be enough for anybody, but the VA contacted the ALS center and suggested I get a manual wheelchair as well.
That should be enough for anybody, but the VA contacted the ALS center and suggested I get a manual wheelchair as well.
The process of being fitted for a manual wheelchair was worse than designing a house. What color did I want? How heavy should it be? What size wheels should I have and on and on.
The chair has not arrived yet, but when it comes I may go down to pick it up in my electric wheelchair and then take my walker in to get it.
Multiplying these things out by thousands of veterans and government officials who have ridiculous perks for their so-called “public service” staggers the imagination. No wonder the US is more than 20-trillion dollars in debt.
My final lesson of the week has to do with gravity. It’s been an on-going process for some time now, but it has finally reached a point of ultra-frustration.
When the apple fell on Sir Isaac Newton’s head, rather than making a pie, he discovered gravity. There’s a corollary to that in the world of ALS which says “if it can drop, it will.”
Picking up papers, pills, household items and silverware are just a few of the multitude of things for which I have come to develop the “ALS Stoop.”
It’s all part of the learning curve, I suppose, but worst of all is the false sense of security I get when doing nothing at all and seems as normal as ever before while knowing full well that “normal” is a thing of the past.
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