Battling ALS and learning about the wonderful world of gadgets
CHARLOTTE, NC, February 19, 2017 – When my neurologist diagnosed me with ALS, she suggested I go to physical therapy as part of the treatment. I was leery at first because it seemed to be an exercise in futility to stretch muscles and joints that had no intention of returning to their original job description.
I discovered, however, that the hour of PT each week was something I began to look forward to. The therapy room was a happy place filled with all manner of machines, gadgets, and gizmos that whirred, cranked, and spun.
More than that, the participants seemed to be enjoying themselves.
Having never spent a single night in a hospital, I am terrified of them. Even occasionally visiting friends and/or relatives when necessary has always given me the willies. I’ve seen too many people check in healthy and come out with sheets over their heads.
But the therapy room was different. Therapists joked with patients and patients made sarcastic comments back. It was a place where positive vibes radiated throughout the room, and I enjoyed it.
The best part came at the end of each session after all my gimpy muscles had been challenged to their fullest. Patricia, my therapist, would wrap my shoulders in roasting heating pads and I could just lay on a pillow and take a nap.
As I suspected, nothing much changed physically, but at least I didn’t feel any worse, and the ALS was still pretty much confined to my arms and my taste buds.
For several weeks the saliva in the back of my throat has had a frothy sensation as if I had just finished gargling an Alka Seltzer. When that happens food just doesn’t taste right. I have resigned myself to the fact that I may never be able to recall what certain foods used to taste like.
No matter. Since my appetite has dwindled, I’m applying for the job at Nutrisystem as soon as Marie Osmond gets tired of it.
When it comes to gadgets, the only group of people in the world that has more of them than ALS patients is golfers. It doesn’t matter what you invent, if you tell a golfer a modified tee or a green reader or a distance marker will knock a half of a stroke off his game, he’ll buy it.
ALSers have our share of trickery too. One contraption is designed like an ankle guard with straps. If you slip the toe of your sock onto the front of the ankle piece and pull on the strings, you have a way of putting your socks on without having to creepy-crawly with your fingers over your feet only to catching a toenail on the weave of your sock.
There’s also a shirt buttoner which has a little metal hook at one end and a plastic handle at the other. You slide the hook through your buttonhole and catch the button. Then you gently glide the hook back through the buttonhole. Voila, you’ve buttoned your shirt!
For eating there is a bionic-looking metal machine that locks down on the table. The brace is bent in the middle and features an arm and elbow guard which are strapped on with VELCRO.
The machine is powered by extra heavy duty rubber bands that add or subtract tension according to your individual needs. Believe it or not, the crazy thing works, although I must say I have had dreams at night of eating and watching a couple of the rubber bands break loose only to fling my arm backward breaking it off at the shoulder.
As a travel writer, I have always enjoyed reading the work of Paul Theroux who has done about every worldly adventure imaginable. Early in his career, Theroux was fascinated with trains and wrote several books on the subject. One of his first was published in 1979 was titled “The Old Patagonian Express” and Theroux’ concept was fascinating.
Starting from his home in Massachusetts, he decided to ride trains to the midwest and then see how far south he could travel by train to reach the southern tip of South America. As I recall, there was only one small gap in the journey where he was unable to connect from point A to point B without using the rails.
While reading the account, Theroux mentioned very early in his manuscript that since he was leaving town and headed out to a bold new adventure, that advertising no longer held any meaning for him. Billboards, neon signs, blinking lights of theaters and such were meaningless because he would not be there to participate.
I have thought much about that idea in recent months and I wonder if the same is true when you have ALS or some other life threatening disease. Does there come a point where advertising and promotions and marketing become meaningless?
I’m not sure if I will ever know the answer or even figure it out, but for the moment, I’ve got my eye on Marie Osmond’s job.
Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.
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