From Tokyo to Tucson: How electric bidets help me live better with ALS

Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years and can’t imagine my bathroom without it.

I’ll admit, though, that my first encounter with an electric bidet didn’t go so well. However, thanks to my habit of keeping written journals whenever I traveled, I can share the details with you here.

Twenty years ago, I had the opportunity to spend a week in Tokyo, promoting a fitness product. My sponsors booked me into one of those modern, lesser-known residence hotels near the downtown area. When I got to my hotel room, I could see it was a model of Japanese efficiency, certainly meeting my needs. But to my American standards, everything seemed ever so petite.

What intrigued me most was the bathroom and its simple arrangement of a toilet, sink, and tub-shower combo. To give you a sense of scale, I could stand in middle of the tiny bathroom facing the sink, and when I reached both arms out, my left hand would touch the wall of the shower, while my right hand would stick out past the door frame. Looking up, I could touch the ceiling while my elbow remained bent. The sink faucet swiveled over to fill the tub. Finally, when I sat on the toilet, I could lean forward and rest my head on the roll of toilet paper mounted on the opposite wall.

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Modern electric bidets captivated my attention every single time I used them. Confronted with their technology, my naïveté had me feeling like a freckle-faced kid, fresh off the farm.

The toilet bowl kept itself dry until it sensed my body sitting on the warm, padded seat. Then, water gurgled in, accompanied by the sound of gears turning and sprayers shifting into place. Mounted on the nearby wall was a panel of buttons, illustrated by stick men and symbols that controlled functions such as water pressure for the spray, warm air for drying, and a gentle flush.

Even though by week’s end I’d learned how to operate my first Japanese “smart toilet” and appreciated the convenience of it all, I still couldn’t get used to the various mechanical sounds and all the activity happening beneath my bare bottom.

Oh, how I wish I had that compact Japanese bathroom today. Just add a few grab bars and it’d be perfect for someone like me, who has limited mobility. But I have the next best thing.

In the months following my ALS diagnosis, my husband and I remodeled our bathroom to make it more accessible. Visualizing a future me, we decided to add an electric bidet toilet seat. Now, 15 years later, we’re still happy with the results.

Electric bidets are popular among people living with ALS because, as our symptoms progress, tasks that used to be second nature — like using the toilet — can become physically demanding and emotionally distressing. Using a toilet with remote-control features means we can keep our dignity and independence.

Who else is talking about toilets? My local group, ALS Arizona. They’ve partnered with the company Many Bidets, which has donated a number of high-quality bidet seats to ALS Arizona for distribution directly to patients in need. Kudos to both! They’re proving my belief that together, we can help each other learn to live well while living with ALS.

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