ALS and Sleep


Finding solutions to your sleep challenges can improve your mood, energy level, and overall outlook on life.

Getting a good night’s sleep is very important, and it can be challenging for people living with ALS. There are strategies and devices that can help. Your ALS clinic or medical team can suggest what might work best for you. Sleeping better can improve your mood, energy level, and overall outlook on life.


Positioning and Pressure Relief

Getting comfortable in bed and repositioning yourself can be challenging. It is important to relieve pressure on specific parts of your body while sleeping. There are a number of strategies and devices that can help during different stages of the disease. Ask your ALS physical therapist (PT) or occupational therapist (OT) what might work best for you.

Initially, propping yourself up with pillows may help you breathe more easily. Bed wedges can help you sit up and/or raise your feet. Larger body pillows may also help you get comfortable. If you have upper body strength but struggle to reposition yourself, you could use a bed rail or bed ladder to pull yourself into position.​

If you are unable to move to reposition yourself at night, you will need to find ways to prevent skin breakdown and pressure sores. Be aware of soreness and redness on pressure areas like your shoulders and elbows. Ideally, a caregiver can turn you over every few hours to prevent pressure sores, though this does interfere with caregiver sleep.

If you need more pressure relief, talk with your medical team about mattress overlays that fit between your mattress and sheet. You can find gel and foam options online or in department stores. Because much comes down to personal preference, you may want to look for what you normally like in terms of softness or firmness. Keep in mind that memory foam toppers will conform to your body and make it more difficult to move.

An alternating pressure pad can help by mechanically inflating and deflating air pockets under you on an alternating pattern. If your doctor documents your need for an alternating pressure pad, it should be covered by insurance.

People who have custom power wheelchairs may spend much of the day in them because you can reposition yourself more easily and use the tilt function to provide pressure relief. However, it is not recommended that you spend the night in your power wheelchair because it is good to get out, stretch, and change positions to relieve pressure.

If you are finding it more comfortable to sleep in your power wheelchair or lift chair recliner, discuss positioning and pressure relief options with your PT or OT. You may also want to consider getting a hospital bed, adjustable bed, or medical bed.

Minimizing Contractures

If your hands tighten or curl, wearing a resting hand splint at night can help reduce stiffness and improve functionality. You can also try grasping a rolled-up hand towel or washcloth. If your feet are curling or tightening, you can try wearing foot brace boots at night to prevent foot contracture and provide heel pressure relief.

Breathing Challenges and Interventions

When your respiratory muscles begin to weaken, it becomes harder to breathe when lying down. Propping yourself up with pillows can help, but if you are still not breathing well—or are feeling disoriented, fatigued, or waking with morning headaches—talk with your ALS neurologist or respiratory therapist about respiratory devices that might help.

A bilevel machine, often called a BiPAP, delivers pressurized air through a mask or interface to assist with inhaling and exhaling. Using a bilevel can help you sleep better, have more energy, and wake feeling more rested. Research has shown that using a bilevel early and often can even help you live longer.

​It can take time to get used to sleeping with a bilevel (BiPAP) machine. You may have to adjust your sleeping position, and it can be a struggle to get the mask to consistently form a tight seal. If you are having trouble with something, reach out to your respiratory therapist.

​If thick phlegm or pooling saliva is affecting your sleep, using a cough assist machine and suction machine before going to bed can help.


Finding the Right Bed for You

If pillows and bed wedges are not providing enough support, you might benefit from a hospital bed, adjustable bed, or medical bed, all of which can help with positioning, circulation, and getting in and out of bed.

​Semi-electric hospital beds allow you to raise and lower the head and foot of the bed with a remote control, though the overall bed height must be adjusted with a manual crank. These beds should be covered by insurance as long as you receive proper documentation from your doctor.

A fully electric (or total) hospital bed can be raised and lowered electronically, though these beds are not covered by insurance. If you prefer a fully electric bed, ask your durable medical equipment (DME) company if you can pay the difference between the two.

Hospital beds are twin beds, so if your loved one wants to sleep next to you, they could buy a twin bed and slide it next to yours.

​Though the functionality of a hospital bed can be very helpful, it may not be as comfortable as your current bed. A mattress overlay with foam, gel, or air pockets might help. If needed, you could also try buying a new mattress for the hospital bed frame.

Many people find adjustable beds to be more comfortable than hospital beds, though they can be expensive and are not covered by insurance. With split king beds, sleepers on either side of the bed can control their own individual settings.

​Finding the right bed for your needs is a very individual decision. Discussing options with your PT, OT, and loved one can help you determine which will work best for you.


Getting In and Out of Bed

If you have upper body strength, a bed rail or transfer pole may help you get yourself up and into position to get out of bed. If you cannot get your legs in or out of bed, you can try using a leg lifter or ask for caregiver assistance.

​A bed ladder or bed foot support can help you sit up. When getting out of bed, you’ll want to avoid reaching out and away from your body to grab furniture or other things for support. This can lead to falls.

​Raising, lowering, and repositioning your hospital, adjustable, or medical bed can help you transfer in and out of your bed more easily. Propping yourself up with a pillow or bed wedge can also help you get into a better position to transfer.

If your caregiver doesn’t feel it is safe to move you—even with devices like transfer boards—you will need to use a patient (Hoyer) lift. Visit our Transferring page to learn more about transfer techniques and devices.

Portable Toileting Options

If you are unable to get out of bed and walk safely to the bathroom at night, there are a variety of portable toileting devices that can help.

A bedside commode is a portable toilet with a bucket that can be placed near your bed. It can be helpful if you can safely 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 unable to safely 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.

Staying hydrated throughout the day is important, but you can try to reduce your liquid intake starting early in the evening so that you won’t have to urinate as frequently at night.


Is anxiety affecting your sleep?

If you are experiencing symptoms such as heart palpitations, shortness of breath, or worrying thoughts that prevent you from sleeping well, reach out to your ALS clinic or medical team. Your neurologist or social worker might suggest anti-anxiety medication that can help you sleep better and worry less. You might also want to meet with a mental health professional like a licensed counselor, social worker, psychologist, or psychiatrist to discuss strategies for reducing your symptoms.

​Your doctor might prescribe sleep medication or even marijuana edibles (depending on your state’s laws). Always consult with a qualified medical professional before taking any medication.


Developing an Alert System

While you are in bed, you must have a way to call for assistance. Develop a system that works for you and your caregiver, keeping in mind that you may need to modify your system over time. Ask your PT or OT which options might work best for you.

If you can use your hands, you can use a cell phone, wireless doorbell, or something as simple as a handbell. If you can speak but your caregiver might not hear you, you can use smart speakers with voice-activated assistants like Alexa and Google Assistant. You can also set up a call button or switch that can be activated by your hands, head, or feet.