Living with ALS : Working around “workarounds” in a new power wheelchair
CHARLOTTE, NC: In the world of ALS, the vocabulary word that is most prevalent is “workaround.” A workaround is a creative, temporary solution that solves an everyday problem. The key aspect of which is the word “temporary.” Workarounds are great for their all too brief lifespans. Workarounds only work for a while, run the risk of breaking down, more often than not. And of course when we least expect it.
That’s when the patient and his or her caregivers become most challenged in seeking new workarounds to replace the old ones. Adaptation is an ongoing effort.
Necessity is the mother of invention
It has been said that “necessity is the mother of invention” and perhaps nowhere is that truer than with ALS. And the possible exception of golf.
The power wheelchair is the Cadillacs of disabled mobility. As technology grows and needs increase, what was once a top-of-the-line design pales in comparison to the Rolls Royce innovations of modern workaround ambulation.
Moviegoers may remember the evil Dr. Arliss Loveless portrayed by Kenneth Branagh in the 1999 film version of Wild Wild West. Loveless was a legless paraplegic who made his way around using a state-of-the-art motorized wheelchair.
For its day and time, the chair was light-years ahead of its era, but not today. The modern power wheelchair is so sophisticated that it takes a college degree to work on them.
In a sense, a contemporary power chair is an ultimate workaround.
Last week I was “measured” for a new motorized chair. Three hours later I had ordered every bell and whistle possible and some that seemed impossible.
The new chair will have the ability to raise the seat as high as 12-inches so that I will be able to converse with people at eye-level. It can, and will, be pre-programmed so that with the push of a button, the chair will automatically raise the footplates to the desired height, tilt the chair back and then recline to place my back and spine in the most comfortable position.
When I am ready to return to my normal position, I simply push the button again and the chair responds in reverse.
I might add that there are three controls on the equipment which will allow me to adapt depending upon my physical capabilities…a finger button, head control, and a leg switch.
In addition, the chair will not only elevate, but it will also recline, tilt and change operating speeds according to how “peppy” I feel on any given day.
Currently, I am seriously considering entering my chair in a new division for NASCAR.
Bluetooth Ambulation and TV watching
Believe it or not, the hand controls which operate the chair will work with Bluetooth so that I will be able to operate my television without using a remote. Remember the days when we had to physically get out of our recliners to change channels?
On the rear of the new piece of equipment, another operator will be able to take control of the power wheelchair to move me about, if and when I am no longer able to do it myself.
There will also be hooks on the back to accommodate a respiratory machine to assist my breathing.
A removable computer table will soon become a part of the chair. Complete with a laptop design that will allow me to write by using head movements when my hands no longer function.
Other innovations include wider armrests with padding on the outer edges to keep my upper extremities from falling off to the side where I require assistance to put them back.
The chair will also be adapted to the appropriate height so I will be able to enter and depart a handicapped vehicle without risking decapitation as I move up or down the ramp for transportation purposes.
Who knows, one day they may add a sidecar so I can entertain guests or possibly include a small refrigerator or bar for mixing refreshing drinks.
Perhaps one day the chair may even add a bed.
Already, in my current power wheelchair, I am able to go to the dentist and tilt back far enough without having to get into his traditional piece of equipment.
The same is true at the barber, where I simply wheel my way into position. Without leaving the chair, the barber can work his magic.
There are other smaller adaptations as well, such as turn signals, headlights, and a warning alarm to let people know I am on the move and dangerous.
You see, workarounds can be magic, so long as patients remember three simple rules:
- Workarounds are useful for a time, but they are only temporary.
- Never become complacent. Always be ready to move on to the next option.
- And, most of all, never lose your sense of humor. Laughter is the best medicine so don’t be afraid to allow yourself to laugh.
With that said, and knowing what I know now, my next workaround plan is to find a way to “drive” my fancy new power wheelchair to the great ALS clinic in the sky. Surely there has to be some way.
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