ALS Bytes

For the month of May, ALS Awareness month, I’m doing my best to chronicle what it’s like to have, live with or care for someone with ALS. Although many of the difficulties, thoughts and complications addressed here are based on my personal experience, I’m including the experiences of other PALS (People with ALS) I’ve known personally, online or otherwise, for a more accurate portrayal of the typical PALS. While this is not necessarily my story of life with ALS, it could be yours, in the blink of an eye…or, the twitch of a muscle.

For today’s entry, I’m writing about a subject nobody likes to talk about, toileting. Toiileting for PALS can be quite a daunting experience, and I’ll attempt to cover a few tips and tricks I’ve learned along the way.

The first challenge for the upper-limb-onset PALS with toileting is most likely buttons, snaps and other fasteners on the pants etc. Early-on, as buttons become difficult, one trick is to simply leave that top button undone, and cinch a belt over it to keep things up and together. Stretchable belts are most comfortable. Try to find one with a small, unobtrusive buckle that won’t pinch or poke when seated. If your pants or trousers button closed, your next challenge is the zipper-pull. These things are always too small, sometimes even for those with no loss of motor function. There are many zipper-pulls available online, but this is something you can do yourself and save the cost. Make some 1-2″ loops out of fishing line, slip one through the hole in the zipper-pull, then back through itself and voila, you have a nice zipper-pull that’s not easily seen, and can be tucked out of site when not needed. I’ve also made my own zipper-pulls out of safety pins with charms from the local craft store for the pull. Other tricks are replacing buttons and or zippers with sewn-in velcro, buying elastic-waist pants, wearing night-shirts only around the house, wearing suspenders or buying specially made clothing with no back, or velcro “trap-doors”. Many home medical equipment stores offer a version of a button-helper and/or zipper-pull, some with large foam handles for easy grip.

I can’t cover toileting sufficiently without mentioning the toilet, can I? ADA-compliant toilets have to be 17-19″ from the finished floor. Don’t confuse the “comfort-height” toilets (15-16.5″) as ADA-compliant. I think most prefer the oval, longer bowl, unless they’re under 90 pounds soaking wet. Also, there are toilet “risers” that have to be installed between the base of the toilet and the floor.

The bidet-style toilet seats deserve a post of their own, so I’ll pick that up tomorrow. Be sure to check back for the crappy details.