The ALS Workaround Dilemma
September 11, 2018 - als
If you’re like me and live with ongoing earthy changes from ALS, you’ve substantially used workarounds.
What is a workaround?
A workaround is a creative, proxy resolution that solves an bland problem. For example, in a genuine world, folks put red channel fasten over a damaged tail light or use a reserve pin to reinstate a blank screw in a hinge of a span of glasses.
In a universe of ALS, artistic solutions go approach over channel fasten and reserve pins. We occupy Velcro, bungee cords, pillows, rolled-up towels, and repurposed items. Photos uncover adult in ALS Facebook groups of automobile rinse mitts used for wheelchair feet pads, cellphones trustworthy to walkers, and women’s tube tops used to strengthen PEG (feeding tube) sites.
The problem is, a workarounds mostly seem to do so good that we put off anticipating permanent solutions — and that can lead to vulnerable situations.
More than once I’ve seen rollators repurposed into proxy wheelchairs (a reserve no-no).
For me, a workaround has to pass my order of 3 questions:
- Is it reasonable?
- Is it rational?
- And, many importantly, is it safe?
Sometimes a workaround is a outcome of an comatose rejection that a symptoms are removing worse. Or we’re not listening to those around us who see what we’re doing and offer good alternatives. Or it’s not a product during all, though the approach we do something.
My initial workaround
When we was traffic with a initial ALS symptoms that hindered my ability to walk, we “invented” a workaround (one that I’m certain others have attempted as well).
I would travel by a residence with one palm on a wall to solid me. Where there was no wall, we grabbed a behind of a chair, afterwards grabbed another, afterwards leading to a kitchen countertop and so on. It was a lurching transformation that over time became graceful. Or so we thought.
What we was doing was positively not reasonable, rational, or safe.
In fact, a integrate of near-falls assured me to listen to my father and my ALS hospital staff and learn to travel with a rollator. That initial rollator increasing my mobility so most that we now possess three: one in a house, one on a behind porch, and one in a car.
If we rest on workarounds, here are a few of my tips:
- Talk to your caregiver, family, or a crony and ask them to be on a surveillance for you. Ask them to be that special chairman who pulls we aside and suggests a better, safer solution.
- Check with your internal ALS Association; their medical apparatus loan closet competence have only what we need, expelling a requirement to invent a workaround in a initial place.
- Ask yourself a 3 questions. Is this workaround reasonable, rational, and safe?
We all use workarounds. They’re easy, quick, and mostly a perfect temporary solution to assistance us to continue to suffer and rivet in activities.
But remember, workarounds are temporary. Always demeanour for a safer and some-more permanent solution. By doing so, you’ll be on your approach to training to live good while living with ALS.
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