Toileting and ALS

There are many assistive devices that can help you stay safe and have greater independence in the bathroom.

When using the toilet becomes more challenging, there are a number of strategies and devices that can help you relieve yourself while staying safe, preserving privacy, and remaining more independent. The occupational therapist (OT) or physical therapist (PT) at your ALS clinic or home health agency should be able to make recommendations on what will work best for you.

Using the Toilet Independently

If you are starting to have trouble getting on and off the toilet by yourself, there are a number of assistive devices that may help.

To begin, make sure your toilet is high enough that your hips are above your knees, if possible. This will give you a mechanical advantage that will help you stand up more easily while using less energy. Older toilets tend to be lower, and even a few inches can make a big difference.

You can raise the height of your existing toilet seat by either adding a hinged raised toilet seat or a toilet seat riser between the bowl and seat. Alternatively, you could install a toilevator under the base of your toilet to raise its overall height. Another option is placing a commode chair over your toilet.

Hinged raised seat

Toilet seat raiser

Toilevator

Commode chair

If you need a little boost, an uplift commode chair can raise you up to a standing position as well as lower you down to a seated position. There is also a powered toilet lift with remote control that can help you stand.

If you have the arm strength to assist, you can place a toilet safety frame around your toilet or add a raised toilet seat with handles. Other options include installing permanent grab bars on the walls near your toilet or adding a transfer pole that runs from floor to ceiling.

Uplift commode chair

Toilet safety frame

Raised seat with handles

Transfer pole

[On Your ALS Guide, we have a box here to recommend borrowing equipment from a loan closet. If you’d like, you can add your own language and link here to your own loan closet.]

Try to avoid reaching out and away from your body to grab counters, furniture, towel racks, or the back of the toilet. This can lead to dangerous falls and unnecessary injuries.

If you are using a walker or rollator, you should bring it inside the bathroom with you and keep it within reach of the toilet. This can give you extra support and assistance when standing up. Be sure to remove any trip hazards in the bathroom like rugs or bath mats.

Some people find it helpful to plug in motion sensor night lights that turn on when you enter so you can see better without having to reach out for the light switch.

If you can get on and off the toilet but have trouble getting dressed again, visit our Dressing page for tips.

The Bidet Toilet Seat

If you are having difficulty wiping, you can replace your toilet seat with a toilet seat bidet with an adjustable water spray. Bidet seats are widely available and easy to install. They do require an electrical outlet and plumbing source.

Commode chairs may be fully or partially covered if you have Medicaid or private insurance, but they are not covered by Medicare. The rest of the toileting devices listed on this page are not covered by any insurance. Ask your ALS clinic or local ALS Network Care Manager if you can borrow them at no cost from their equipment loan program.

Using the Toilet with Caregiver Assistance

If you need the assistance of a caregiver to get on and off the toilet, many of the devices listed in the previous section should still be helpful. Having a higher toilet seat and something to grab onto can make transfers easier. Visit our Transferring page to learn about best transfer practices.

If you can still wipe, or if you have a toilet seat bidet, you can still have privacy once you’re seated on the toilet.

Another option at this point is to first transfer to a shower commode chair, which a caregiver can roll into the bathroom and over the toilet. If your patient (Hoyer) lift can fit into the bathroom and over the toilet, you can use the toilet as long as you are placed in a divided-leg sling with your lower body exposed.

Portable Toileting Options

If you are unable to make it to the toilet, there are other ways that you can relieve yourself. A bedside commode is a portable toilet with a bucket that can be placed near your bed. It can be helpful if you can still get in and out of bed but don’t feel safe walking all the way to the bathroom, especially in the middle of the night.

If you are having difficulty or are unable to get out of bed, there are portable urinal options for men and women as well as condom-catheters for men and external catheters for women. Adult diapers and bedpans are other options.

When your mobility becomes limited, it can be helpful to develop a somewhat regular toileting schedule, if possible. In the early evenings, for example, you can reduce your liquid intake so you don’t wake up as frequently to urinate. And if you are able to time your bowel movements with your getting-ready morning routine, it can mean one less transfer.

ALS does not directly affect bowel function, but people living with ALS often struggle with constipation. If this is an issue for you, ask for suggestions from the neurologist and dietitian on your ALS clinic team or medical team.

Are your bathroom and toilet accessible?

The bathroom is usually the most challenging room to navigate for people living with ALS. Bathroom doorways are often narrower than other doorways in the house, which can prevent walkers and rolling shower commode chairs from entering. And once inside the bathroom, there may be little room for transfers or assistive devices around the toilet.

You may be able to make simple changes like widening your doorway a few inches with offset hinges, or clearing furniture or shelving, but if you need to make your bathroom bigger, safer, or more accessible, visit our Home Accessibility page to learn about your options.