CHARLOTTE, NC, January 28, 2018: A friend diagnosed with ALS before I was diagnosed with the disease, once said that the best part of his day was when he could lose himself in his writing. It was one of the few things he could do where he would forget about his condition.
With ALS, no two people experience identical afflictions.
Though there is the common bond of ALS among patients, it is difficult at times for one person to relate to someone else’s situation.
While some people lose the ability to speak, others lose the use of their legs or arms and others may have trouble raising their head or swallowing.
In retrospect thus far, for me the biggest adjustment has been the loss of my independence. It is extremely difficult to remember that light switches are too high or that a table is never exactly the right height.
It is tough to rely on others to do the simplest things for you such as turning on the water to wash your hands or having someone there to wash your hair.
In the final analysis, it all adds up to a waiting game. Either I must wait for assistance or my caregiver has to wait for me to get ready for their help.
With ALS, it’s about accepting limitations
Gradually, it gets to the point where you realize your limitations and you simply yield to the restrictions. In many ways that’s a good thing. For example, I no longer have to feel guilty when I don’t volunteer for something.
“Raise your hand if you can volunteer,” someone says.
“I would if I COULD raise my hand,” I think. Then suddenly, before you know it, I’m off the hook.
Had I known that you can get through security at the airport faster in a wheelchair at the airport, I would have started that process much earlier.
The same is true with handicapped parking spaces.
I have now nicknamed myself “The Milkman” because every day I learn some new little trick that speeds things up.
Why “Milkman”? Because every lesson I learn that adds to my quality of life and newly adapted style of freedom is something I am planning to “milk” for all its worth.
With ALS, it’s about finding distractions
My friend was absolutely right about losing himself in his writing. There are only three times a day when I forget I have ALS. Writing is one, except when my palm hits a key on the computer that rearranges the format I am using. Being the tekkie wizard I am, it might take as much as an hour to get the page back to normal.
Of course, if my four-year old grandson could drive, he could come down and solve the problem in seconds.
Second is watching TV. That, also, presents its own set of problems, however, because I constantly drop the remote or hit the wrong setting or am unable to reach my cell phone when it rings. But just sitting and watching requires no movement, and when you don’t have to move, somehow the ALS goes away.
It works that way in the car, too. I hate not being able to drive to places to run errands or having to rely on changing other people’s schedules so they can take me somewhere.
On the other hand, I am seeing a lot of things out of the windows I never saw before and, the best part is, once again I don’t have to move.
With ALS, comes new technology
As the condition has slowly progressed, we have added a number of new machines with which to decorate our house. I have gotten to the point where I call it the “industrial evolution.”
Among the implements we have acquired are; a motorized wheelchair, a standard wheelchair, an oversized walker large enough for Dumbo that will not fit through any doors, a trilogy machine which is like a C-Pap on steroids, a cough assist machine, a ventilator, two arm braces, a neck brace and various sundry other gadgets like extra long eating utensils and a sock holder for putting on compression hose.
Early on we were told to order everything in advance so that we would have things when the time came to use them. We have followed that advice to the extreme, to the extent that now when someone mentions some new electronic machine I begin to think I am becoming a bionic person.
It’s all part of the adjustment. Each person deals with ALS in their own way.
One thing I have noticed is that despite the level of loss of dexterity, almost everyone I encounter has a positive attitude and seems to have adjusted to their plight in their own personal way.
You see “what goes around comes around” and “milkmen” are making a comeback.
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