Toileting & Hygiene

Early in ALS, it may be hard for a person to get up from the toilet. Something like a Tall-Ete overlay or a bidet may help.

Later, if you decide to create an accessible bathroom, a CAPS (Certified Aging in Place Specialist), often employed by contractors or consultants, may be able to help. However, the length of time that renovations will be usable may be very limited, so it's not something to undertake unless it pencils out net positive in terms of home value and you can afford it.

In short, there are ways around creating an accessible bathroom, some of which include using a urinal in bed (such as the UriBag — available in M and F versions, usable in bed, wheelchair, recliner, and public restrooms) and for BMs, hovering over a commode or bucket of any kind, which doesn't have to be located in the bathroom.

For BMs, if the bathroom and commode or shower chairs no longer work, such as when core strength wanes, you can use the sling to hover over a bucket from a shower chair or commode and put it into a wastebasket or other height-appropriate container; just line it with a plastic bag and then dispose of it in the trash. Or depending on the dimensions of the chair that the PALS can no longer sit in, they may be able to have BMs into the bucket while it's in its original chair.

Many PALS have constipation because of loss of "pushing" muscle tone and strength. This can take the form of having fewer BMs a week, or having too many because of the difficulty in fully pushing everything out.

Diet and hydration often play a huge role; by getting these right, PALS can often avoid commercial laxatives, which can create dehydration and other imbalances, interact badly with other meds and conditions, and demand greater and more doses to enable BMs.

On top of good nutrition (good fats, high-quality protein, fruits/veg as tolerated), approaches to constipation may include fresh or canned/cooked pairs, salsa, hot coffee or cocoa, fresh or cooked/canned spinach or kale, among others. Any warm liquid can be good, whether by mouth or tube; but, often, cold liquids, cow-based dairy and densely fibrous foods such as cruciferous veggies and nuts can be problematic and may need to be replaced.

Some medications can worsen constipation, notably benzodiazepines, opioids, and, sometimes, laxatives.

The type of sling to use for every kind of transfer and toileting is usually a U-sling, also called a divided leg sling. Do not use the toilet sling, which has a little hole in it and is completely impractical—why these were ever invented is unclear, because the support you need for your butt is readily achieved with the divided leg sling, which is much more clean and sanitary. Of course, it's wise to have a second sling so you can have one in the wash (no hot water or high heat settings) and use the second one.

For hygiene, after toileting and at other times, I prefer a disposable wipe, preferably unscented to avoid irritation, to a washcloth and water. The reason for this is that a washcloth leaves a lot of moisture behind and the friction that a washcloth is designed for is often irritating to the skin layer involved. If you are using wipes in lieu of a shower, there are thicker ones designed for that purpose, that can be heated in the microwave.

But if you do use water or a wipe, make sure the area is dry after applying. If you decide to powder afterwards (which may be applicable for some people), use cornstarch, not talc, which is less irritating to the respiratory system.

Some people have a roll-in shower with no threshold. Other people can create the same thing by using a shower chair that has a track system enabling it to go over a threshold. Shower chairs in this category include the ShowerBuddy and Nuprodx lines.

Without the track system, these can also be used over some toilets, but not all. So don't count on a shower chair being compatible with your toilet unless you have verified it before buying.

To avoid using urinals, some people choose catheters — usually condom catheters for guys and something like the PureWick. This is an individual choice, though the risk of infection and leakage should be carefully considered. Proper handling is important.

Of course, you can always move from urinals to catheters and vice versa.

When out and about, I recommend a UriBag urinal, which folds up and is available in M and F versions. Many people also use these in a wheelchair, sling, or bed. A hard plastic hospital style is good to have at home, as well.