Driving, Sleep, & More on ALS

Sleeping and ALS

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.

The Freedom Bed is a unique medical bed that has a quiet, mechanical turning system that eliminates the need for manual turning and repositioning. This programmable, rotating bed from ProBed eliminates the need for manual turning and repositioning, which can help you and your caregiver sleep through the night.

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.

Equipment Loan Closets

You can potentially save thousands of dollars by borrowing equipment from ALS loan closets. Many local ALS organizations and clinics loan certain types of assistive devices and medical equipment at no cost. At ALS United Rocky Mountain we have a diverse equipment loan closet, check with your Care Coordinator on what devices we are able to loan out.

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.

Driving and ALS

As ALS progresses, the question of how long you should continue to drive may arise. It can be hard to consider giving up the independence that driving provides, but if you continue to drive after it has become unsafe, you could hurt yourself and put others at risk.

There are ways to gauge whether you can still safely drive, and transportation alternatives if you need to delegate driving.

Can I still drive after my diagnosis?

A diagnosis of ALS does not mean you must stop driving immediately. You may continue driving—but only as long as it is safe. ALS is a progressive disease, so being realistic about your current driving capabilities, listening to the concerns of others, and being open to reevaluating your situation as your symptoms progress are key to maintaining safety.

If your caregiver, family, or friends express concerns about your driving, listen to them. Studies show that loved ones have a more accurate assessment of driving safety than the drivers themselves.

It is important to discuss driving safety early and often with your ALS clinic team. Your neurologist and occupational therapist (OT) can guide you, evaluate you, and make recommendations that will help keep you safe. If your clinic team feels it is still safe for you to drive, ask your neurologist for a handicap parking permit to help you park closer and conserve energy.

Are there changes I can make to keep driving?

In some instances, the addition of vehicle modifications may allow you to continue driving safely. If your lower limbs are strong and just one hand is weak, you may be able to continue driving with a spinner knob that can be used to operate the wheel with one hand. Additionally, modifications to secondary controls such as turn signals and wipers may be added.

If your lower limbs are weak, but you still have good upper body strength, you may be able to control the gas and brakes with your hands using special hand controls.

Talk with your OT about whether there are modifications that could help you continue driving safely. Do not try to make modifications on your own. Your OT will refer you to a specialist who can evaluate you, order the right devices, and train you to use the devices before installation.

Driving modifications could cost a few thousand dollars, and you will likely need to pay out of pocket. Modifications made to the vehicle, such as spinner knobs and hand controls, must be noted as a restriction on your license in order to be used legally in the vehicle.

If you have trouble getting in and out of your car by yourself, or if you can’t buckle your seat belt on your own, ask your OT about assistive devices that might help.

When should I stop driving?

You should stop driving when it becomes unsafe to you and others. Your occupational therapist can assist you when this becomes the case. If it is very clear, your OT or physician will make the recommendation that you stop driving. Or, if further assessment is recommended, you can schedule a formal driving safety evaluation.

There are some general signs that driving may no longer be safe. You may need to stop driving, or seek an evaluation, if you:

Don’t have the muscle strength to properly control the wheel and pedals
Can’t get in and out of your car on your own or might fall after getting out
Have breathing challenges that affect your driving and/or energy level
Have secretions that interfere with your driving
Exhibit poor judgment that leads to accidents or near misses
Change your driving patterns, such as driving much more slowly
Have a slower reaction time
Wear a neck brace that prevents you from looking side to side
Wear an ankle foot orthosis (AFO) that interferes with your driving (and that you can’t take on and off independently)

Every situation is different. If you or your loved ones have safety concerns, or if your symptoms change, schedule an appointment with your OT to get clearance before continuing to drive.

If your medical team recommends and documents that you should stop driving, and you get into an accident (even if it is not your fault), you may get sued and be liable for damages.

How can I get a driving evaluation?

The occupational therapist at your ALS clinic can do a screening during your routine clinic visit. If your OT feels that further evaluation is needed, they may do more in-depth testing either during your visit or during a separate follow-up visit. If you or your OT would like further assessment about your driving capabilities, you can schedule a formal driving evaluation.

Your OT may recommend a specific driving rehabilitation specialist or location that can perform the test. You can also search for evaluation options in your area on the Association for Driver Rehabilitation Specialists website.

Some places will conduct a simulated test in a clinical setting that measures things like your reaction time, cognition, divided-attention capabilities, and visual perception. Others may conduct an on-the-road driving test. Some may do both. A clinical test alone may cost a few hundred dollars. A combined test may cost $500, or even up to $1,000 in some states. In most cases, insurance will not cover your driving evaluation, so you will need to pay out of pocket.

How will I get around if I need to stop driving?

When you need to delegate driving, there are other options for getting where you need to go. Planning ahead and lining up transportation options should allow you to still get out and do the things that are important to you.

You can start by asking family, friends, and other members of your community if they can help give you rides. You can set up a digital calendar, use an online tool like Lotsa Helping Hands or CaringBridge, or develop another system so you can communicate your transportation needs and people can volunteer for specific days and times.

Other options in your community may include public transportation, ride services like Uber and Lyft, or handicap-accessible transportation services. You can search for medical transportation options in your area on the Rides In Sight website.

If you have a heavy power wheelchair, you may still be able to use public transportation and handicap-accessible ride services. Some families decide to purchase handicap-accessible vans for greater freedom of movement. You may be able to transport your power wheelchair using vehicle lifts and ramps.

A note for concerned caregivers and loved ones

Driving can be a source of stress and worry, especially if you have safety concerns and your loved one does not want to listen or stop driving. Ideally, your ALS clinic or medical team will begin talking about driving as early as the first clinic visit. The ultimate transition will be easier if driving safety has been an ongoing conversation.

If your loved one refuses to stop driving after hearing your safety concerns, you can contact the ALS clinic or medical team independently to share your concerns before the next visit. It is helpful to have a neutral professional (such as a neurologist, occupational therapist, or social worker) facilitate the conversation and make recommendations.

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