Using an ALS Hack for Everyday Tasks? Make It a Safe Solution
Some adaptations make living with ALS easier, but think them through
I love scrolling through the short videos people post on social media with tips and tricks to help make everyday tasks easier. Commonly called “hacks,” these are easy shortcuts that often involve repurposing items found around the home. For people like me who live with ALS and the ALS symptoms of weakened hands, feet, and voices, we need all the life hacks we can find.
Most of these videos on hacks are made for the general population. For example, there are easily 10 ways a plastic bottle can be reused. Begin by slicing off the bottom of the bottle to use as a small tray under a potted plant. Then you can cut off the top of the bottle to use it upside down as a small funnel. And so forth.
In each video, I try to spot the tips that can be useful for me, such as wrapping rubber bands around small lids to help improve friction and grip and help twist the lids off, or using extra-long barbecue tongs to pick up items from the floor or off a shelf.
ALS hacks: pros and cons
But I’ve also seen hacks specifically for ALS patients, like car wash mitts being used for wheelchair foot pads or women’s tube tops used to protect a PEG feeding tube.
It all falls under what I call the art of ALS adaptability. But being adaptable doesn’t always work in our favor. Sometimes we don’t realize we’re just relying on a temporary solution — one that was unsafe to begin with.
When I was dealing with my initial ALS symptom of foot drop, I adapted and became a “furniture grabber.” I’d walk through the house with one hand grabbing a nearby chair, the countertop, and so on. It was a lurching movement that I thought looked graceful. But it really wasn’t.
In fact, a couple of near falls persuaded me to listen to my husband and my ALS clinic staff and learn to walk with a rollator.
At the grocery store, I’ve seen rollators repurposed into makeshift wheelchairs, where the patient sits on the rollator trying not to let their feet drag while a friend pushes them forward. Maybe this was OK in an emergency, but they seem to be doing the maneuver so well I figure it’s become a very routine (although still unsafe) solution.
Adapt, but be safe
Whenever I find myself having to adapt to a change brought on by my ALS and I’m considering using a hack, I ask myself these questions:
- Is this hack reasonable?
- Is it rational?
- And most importantly, is this hack safe?
Here’s a hack I use to help strengthen my diaphragm muscles that I’ll share with you. It’s a do-it-yourself breathing trainer that uses a large plastic bottle that’s half full of water plus a length of flexible tubing. You can read how to make it and how I use it in this blog post.
Boom. And now we have 11 uses for a plastic bottle.
If you’ve got fun (and safe) ALS hacks to share, please offer them in the comment section below. Let’s help everyone learn how to live well while living with ALS.
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