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, but  it could be yours, in the blink of an eye…or, the twitch of a muscle.

I do realize I’ve crossed into the how-to’s for dealing with ALS, as opposed to chronicling of the typical PALS. I’ll do my best to address both.

Let me begin today’s entry by explaining my current methods for toileting and go from there. The master bathroom has what my brother Derek calls a “stink closet” at the far end. This is basically just a small room with a door, just big enough for a toilet and space for the door to swing open. I’ve had the door removed because I got tired of bumping into it when shuffling my way to the toilet; my wheelchair doesn’t fit through the narrow door, so it’s left in the doorway, with just enough room for my caregiver to get out once I’m seated. The “shuffle” I spoke of…my caregiver, holding my wrists,  pulls me from my elevated chair to a standing position. From there, I haphazardly step through the doorway, and leaning against the wall, make my way to the toilet. Once I’ve got my balance in front of the toilet, my caregiver releases my wrists to pull everything down. Then she takes my wrists again and keeps me from making a hard landing. Then she puts my bidet remote by my feet (more on that later) and a magazine. I operate the remote with my toes, and have also learned to turn the pages of the magazine with my feet, pretty tricky, but not too difficult. I subscribe to the large-print edition of Readers Digest to make reading it on the floor easier. I’ve also used a wireless doorbell to call for my caregiver when I’m done, but now just use the “come back in xx minutes” routine, because the wireless doorbell buttons tend to disappear.

The bidet-style seat

I use the Toto Washlet S300. These things can really go a long way toward maintaining at least some sense of your dignity and independence once you’ve lost the ability to clean yourself adequately. However, I don’t believe it can be relied on to get your bottom completely clean, especially if you don’t have the core strength to adjust your position to receive maximum cleaning benefit. Even though the wand spray position is adjustable through the remote, I still have to lean forward and push my butt back to reach the forward-most area for cleaning. In spite of still having the ability to move the target to the water source, I still find there’s almost always something the water doesn’t remove. We now always do a “check-wipe” to be sure.

Besides the cleaning ability, other niceties of the bidet-style seat are adjustable water pressure, temp and spray pattern, air-dryer temp, as well as adjustable heated seat, built-in deoderizer (inadequate) and soft-closing seat and lid. These bidet seats typically run anywhere from $600 and up. You’ll have to have a gfci outlet installed by the toilet to plug it in, and you’ll need a plumber or handyman hook it up to your toilet water supply. They also have energy-saving low power modes so the seat only stays warm when you’re most likely to use it. I think most washlet users will agree, once you use it, you’ll wonder how or why you ever did your business without it.