Do You Work-Around? (ALS Safety Tips)

Have you ever heard of workarounds?
I’ll bet you’ve seen them, and - - even used them yourself!

A workaround is a temporary solution or adaptation to help solve a problem. Examples are: when you spot red duct tape over a broken tail light or someone puts a safety pin in the broken hinge of a pair of eyeglasses.  We humans can be pretty creative when it comes to devising workarounds. In fact, some are downright fun to see!

My ALS-related workarounds

Living with ALS and the physical changes that affect our body’s ability to move is an invitation for creative workarounds.  For instance, when I first noticed a weakness in my hands, food storage containers became nearly impossible to pry open. I swore it was a conspiracy of the plastics industry.

My work-around was to wedge a soup spoon firmly between the ridges of the lid and attached container, apply firm pressure while adding a twist, and - - the lid popped off.  My solution worked and kept working well enough that I completely delayed what would be the logical next step - - a permanent solution. As in, buying and using easy-to-open ergonomic food containers. Nope, I put that off, until the day when my pressure on the spoon exceeded my reaction time. The result was coffee grounds scattered all over the countertop!

That’s the trouble with workarounds; they seem to work so well we put off finding permanent solutions. I wasn’t paying attention.

And when the work-around involves our physical health, delay may be due to an unconscious denial that our symptoms are getting worse. Or, possibly we don’t have a special person in our life; the friend who will pull us aside and say, “Let’s talk. What you’re doing isn’t working anymore.”

Witnessing a very unique work-around

A few months ago I was sitting in our car in the parking lot of the drugstore waiting for my husband who was inside picking up a few items.  

At first, I hardly noticed the dark-colored station wagon as it pulled into a handicap space near the drugstore’s entrance. A short, middle-aged woman exited the driver’s side and instead of heading straight into the store, she flung herself stomach-first onto the side of the vehicle. Then, while rising on tiptoe she reached up to grasp the top chrome rails with both hands and took a moment’s pause.

She had my full attention now!

Using a side-stepping motion coordinated with a right hand-left hand slide along the rails, she nimbly inched her way from the front of the vehicle all the way to the rear. Somewhere near the tail-light area she opened the rear door and brought out a folded walker with wheels. Once the walker was ready to go, she shut the rear car door and pushed her way into the drugstore.

Stunned, I hoped I’d have a chance to see her come out again. As luck would have it, she quickly reappeared; stowed her walker in the rear of the station wagon, reversed her acrobatics hand-over-hand while on tiptoe to reach the driver’s door, got in, and took off.

This left me pondering two questions. First, was I an eyewitness to a one-time ‘emergency run’ to the drugstore? Simply an unfortunate woman (with a who-knows-what kind of physical issue) having had no recourse but to do the trip all by herself? 

No, somehow her acrobatic routine looked a little too smooth and practiced for it to be a one-off situation. Her particular workaround had become her new normal.

Which brought me to my second question. Didn’t this woman have friends or neighbors who wondered why, compared to the overall dusty condition of her vehicle’s exterior, the driver‘s side was exceptionally polished and shiny? Why hasn't anyone pulled her aside to say, “Let’s talk! What you’re doing isn't safe anymore.”       

Sometimes workarounds can lead to dire consequences

Whenever I'm at my hairdresser’s salon, I occasionally meet a woman (I’ll call her Mary) who has a condition similar to my ALS, and during our brief encounters we've noted similar muscle weakness in our legs and feet.

When I first met her she used a cane to help her walk. As her walking became more difficult, her work-around was to use two canes.

I’ve sat and observed Mary coming in from the parking lot, a slow lurching forward movement similar to mountain climbers using ski poles. Each step a struggle for balance and forward motion. One day, we happened to sit next to each other in the waiting area and I casually asked if she ever considered using a wheeled walker.  Mine was parked directly in front of me, nearly touching my knees. She glanced at it briefly, “One of those?” she answered with a laugh. “Oh no, I like my freedom!”  

I paused, wondering if I should let the comment go or argue the point. But before I could say anything Mary was called for her appointment and she lurched off and around the corner.

Then, a few months went by without our chance meetings so I asked one of the hairdressers if she knew anything.  “Mary?” She whispered.  “Oh, she fell and broke both wrists. She uses a wheelchair now.” Then leaning in a bit closer she whispered, “Every time she came in we’d worry. You know, those two canes were dangerous!”

Friends help friends

We all use workarounds. They’re easy, quick, and often the perfect temporary solution to help get us through the day. But let’s all try to be a little more attentive to how much we’re depending on that work-around. Talk to your spouse, family member, or friend and ask them to be your lookout. To be the special person who pulls you aside. When they do, listen to them. Don’t argue, give ten reasons why your methods are working or simply stomp away. Find the permanent solution. By doing so you'll be on your way to a happier and, safer life.

Dagmar Munn
ALS and Wellness Blogger