ALS Home and Daily Living Guide

When living with ALS, remaining independent while trying to stay safe can be an ongoing challenge. As the disease progresses, it is important to reevaluate your home safety situation and make adjustments as needed so you can continue to stay safe in your home, enter and exit on your own, and call for help when needed.

​The physical and occupational therapists at your ALS Clinic, outpatient physical or occupational therapy, or home health agency can help you find ways to be safe and maintain your independence.

Home Safety Evaluation

If you’re noticing changes in your mobility and are starting to feel unsafe in your home, schedule an appointment with your neurologist or primary care provider and ask about arranging a visit by a physical or occupational therapist from a home health agency. You can also request a home visit from ALS Northwest.

​You can also share photos, videos, and measurements as needed with your physical and/or occupational therapist.

​Once professionals are able to see and assess the safety and accessibility of your home, they can make recommendations such as using assistive devices, installing ramps, and making other home modifications. Their assessment can help you address current challenges and anticipate future needs.

Getting In and Out of Your Home

Whatever your current mobility status, you must have a way to safely enter and exit your home. Your physical therapist can help you determine the best solution for your home.

If you need help navigating a small step or threshold, a relatively inexpensive portable ramp or threshold ramp may be all that you need. 

If you have multiple steps outside your home, you may need to install a longer custom ramp to help you enter and exit. 

If you have multiple steps and not enough room for a long ramp, a motorized vertical platform lift may be a good option for you. 

Ramps and platform lifts are not covered by insurance, but you can ask ALS Northwest if you can borrow what you need from their equipment loan closet. If borrowing is not an option, ask if they have suggestions for getting financial or material assistance from charitable organizations in your community. Consult with a professional before purchasing, installing, or building ramps for your home. Depending on your state, you may not need to pay sales tax if your doctor provides a prescription for the ramp or lift.

Developing a Safety Alert System

In the event of a fall or medical emergency, it is important to have a way to contact people who can help. Modern technology offers a variety of options.

​Keeping your phone on you at all times is one way to have the ability to ask for help, whether by dialing or using a voice-activated assistant. Smart watches can offer similar capabilities and may even be able to detect a fall and automatically notify others.

Placing voice-activated smart speakers with digital assistants like the Google Assistant or Amazon’s Alexa in rooms where you spend your time is another option. If you use a speech-generating device, there are built-in features as well as apps that you can download that can help you alert others if you need assistance.

​If you have a medical emergency, you will need a way to call 911. Not all voice-activated assistants on your smart devices can call 911. You may want to consider getting a medical alert system that can either dial 911 or an emergency response center.

​Medical alert systems generally fall into two categories: monitored and unmonitored.

An unmonitored medical alert system is not connected to a central response center and will call numbers that are programmed into the system. It generally relies on landlines and does not require additional costs after your initial purchase. You can program your unmonitored system to automatically call 911 or dial your emergency contacts. 

A monitored medical alert system will call an agent who can quickly assess your situation and call 911 or your emergency contacts if necessary. Monitored systems offer more features but do incur a monthly charge.

Methods for accessing medical alert systems include pressing a button on a necklace or bracelet and using voice activation. Your physical and occupational therapists can work with your speech language pathologist to determine the most appropriate device and access method for you.

Once you have your system in place, develop a list of family, friends, and neighbors who will be able to respond, and program their numbers as favorites into your devices.

Keep in mind that your local fire department can also be very helpful. If you fall, are not injured, and just need help getting up, you can call their non-emergency number to request a lift assist and they will come to your home without lights and sirens. Lift assists are a common part of a firefighter’s job, so do not hesitate to ask for help when you need it.

It is also a good idea to inform your local fire department of your diagnosis and provide your number so they can respond if they receive a call from you. This is especially helpful if you are unable to speak. In many instances, you can let them know ahead of time that there is someone in the household who is unable to speak. This way, if they receive a call from your number, they will treat it as a real emergency.

Preventing Falls

It is important to make modifications that will minimize your risk of falling, as falls can lead to injuries. Most falls happen in the home, so identifying potential hazards, problematic areas, and risky activities can help reduce your chances of getting injured.

You can begin by just looking around your space or following the recommendations from your home safety evaluation, such as clearing clutter, removing trip hazards like throw rugs, and installing grab bars.

​​If you have stairs, it is important to have railings that extend from the top of your stairs to the bottom. You can add an extra grab bar at the top or bottom as needed, or perhaps a second rail to have one on both sides. If you have small steps or raised thresholds inside your home, consider installing grab bars and/or threshold ramps as needed.

​If you find that you are tripping, or if you or your loved ones have any concerns that your walking is unsteady, meet with your physical therapist to discuss mobility support options like ankle foot orthoses (AFOs) or walking aids. Having the right mobility device for your current needs is an important part of fall prevention.

Here are some other general tips that can help minimize falls around the home:

• Wear supportive, non-slippery shoes or slippers.
• Avoid walking barefoot or in socks when possible.
• If you have an AFO, wear it inside as much as possible.
• Try to avoid rushing and multitasking when you’re standing or walking.
• Try to avoid carrying things while walking, especially on stairs.
• Instead of stepping up on a stool to reach for things, place frequently used objects at a more accessible height.
• Make sure you always have adequate lighting to see where you’re going.
• If you drop something on the floor, try to avoid bending over while standing to pick it up. Instead, either use a reacher, sit down to pick it up, or ask someone else to get it for you.​

If you feel that your needs are changing and your current strategies and devices are no longer keeping you safe, reach back out to your physical and/or occupational therapist to restrategize. Safety must always be the number one priority.

Bathroom Safety

Bathrooms are often the trickiest room to navigate—and they are also where falls and injuries can and do happen. In addition to following recommendations from your home safety evaluation, work with your physical and/or occupational therapist to create a safe bathroom environment for you.

Common bathroom safety recommendations include:

• Removing trip hazards like loose bath mats
• Adding non-skid mats to your tub or shower
• Installing grab bars in and around your shower and near your toilet
• Sitting on a shower chair or transfer bench while bathing
• Using assistive devices to help you get safely on and off the toilet

As ALS progresses, maneuvering around your home can become challenging—and the thought of making big renovations or moving can be overwhelming. There are a variety of options, including relatively inexpensive home modifications and adaptive equipment, that may continue to make your home accessible.

​The physical and occupational therapists at your ALS clinic or home health agency can help you try to find ways to continue to access your home and maintain your independence.

Assessing Your Options

Every home presents its own challenges and opportunities for short-term and long-term accessibility. In order to understand your options, it is important to invite an experienced professional into your home so they can see it in person and make recommendations.

Ask your ALS clinic and/or ALS Northwest if a member of their team can do a home visit and assessment. If that is not possible—and if your insurance will cover it—ask your neurologist, clinic coordinator, or primary care provider to arrange a home safety evaluation by a physical or occupational therapist from a home health agency. You can also take photos, videos, and measurements as needed to share with your therapists.

​Once you have received the information and recommendations from your home assessment, you can begin to think about your short- and long-term options. What are the simple things you can do now to improve your home’s safety and accessibility? What might be your best options for when your mobility is more limited?

Thinking ahead and planning for your future needs can help you make timely adjustments and avoid getting stuck in a situation where you have limited accessibility.

Home Modifications without Renovations

After your home evaluation is complete, you should have a good understanding of the changes that need to be made so you can be safe and more independent at home.

​Clearing pathways and removing tripping hazards is often a good place to start. This may include removing loose throw rugs, cleaning up clutter, and rearranging furniture. Keep in mind that mobility devices like power wheelchairs will require wider pathways and additional space for turning around.

Narrow doorways can also present a problem for some mobility devices. If your doorways are just a little too narrow, you can gain extra space by installing offset hinges, removing the trim, or even removing some interior doors altogether. If your doorways are still too narrow, you may need to hire a contractor to widen them. If you have a power wheelchair, you will want doorways that are at least 32 inches wide.

Flooring is another important factor to take into consideration. Shaggy carpet, or carpet with extra soft padding, for example, can be a problem for walking aids and power wheelchairs, in addition to being a tripping hazard. Smooth, high-impact surfaces that are not too slippery are usually a good option.

Ramps for Home Accessibility

Whether you are walking or driving a power wheelchair, there are a wide variety of ramps that can help you continue to access the different parts of your home and property.

If small steps or thresholds are a problem, relatively inexpensive threshold ramps may help. These ramps can be fixed, adjustable, or modular and are often made of rubber, aluminum, or foam.

​Ramps are not covered by insurance. Ask ALS Northwest if they might be able to lend you one from their equipment loan closet. If you need to pay out of pocket, you can visit Your ALS Guide's Ramps page. Depending on your state, you may not need to pay sales tax if your doctor provides a prescription for the ramp or lift.

If prefabricated ramps won’t work for your thresholds or steps, you may need to have a custom ramp built. You may be able to get assistance from local churches, charities, or organizations such as Habitat for Humanity, Elks, and Rotary. Boy Scouts may even be able to build you a custom ramp as a community service project.

If you have questions or concerns, ask a professional for guidance before purchasing, installing, or building ramps for your home.

If you have multiple steps outside of your home, you may need a longer custom ramp to help you enter and exit. These wooden or aluminum ramps may be long and even turn, depending on your vertical rise and available space.

Ramps will vary in size and length depending on your needs. For safety reasons, ramps should have gradual slopes. The American Disability Act (ADA) requires public ramps to have 12 inches of length for every inch of vertical rise. Also keep in mind that a power wheelchair will need enough room to maneuver at the top and bottom of each ramp. Learn more about wheelchair ramp slope measurements.

Ask a professional or building contractor to visit your home and suggest the best type of custom ramp for you. To find a good contractor, ask ALS Northwest for recommendations, search online, or ask your chamber of commerce about companies that specialize in wheelchair ramps. If your family, friends, or community want to build you a ramp, here are some tips for measuring and building wheelchair ramps.

Custom ramps are not covered by insurance and often cost $5,000 or more. Ask about financial and material assistance options at ALS Northwest as well as at churches, charities, and community organizations in your area.

Vertical Platform Lifts

If you do not have enough room for a ramp to help you get up and down a few steps, you may want to consider getting a vertical platform lift. These motorized lifts can support the weight of a power wheelchair and are typically located either outside the home or in a garage.

Platform lifts can be expensive and are not covered by insurance, though Medicaid may cover them. As always, ask your physical and occupational therapists and ALS Northwest if there might be any loaner options or financial assistance available.

Accessing Your Multi-Level Home

If you live in a home with one or more sets of stairs, accessing the different levels of your home can become challenging. Depending on the configuration of your stairs, you may be able to install a stair lift, often called a stair glide, to transport you between floors.

​Stair lifts are motorized chairs that run up and down on a track mounted to the wall next to your stairs. Stair lifts may not work in every situation, but they can be configured for both straight and curved stairs.

​Stair lifts can be a great option for people who tire when walking up stairs or who use walking aids or standard wheelchairs and can still assist with transfers. Keep in mind that you may need to leave a second walker or wheelchair at the top or bottom of the stairs to help you move around on that level.

Stair lifts can be expensive and are not covered by insurance. Ask your physical therapist or ALS Northwest if you can borrow, rent, or receive financial assistance.

In some instances, it might be possible to install an actual elevator in your home. This can be an expensive option, but if you can afford it, it could provide the best access to the different levels of your home.

If a stair lift will not work for you, or if you have a custom power wheelchair and cannot install an elevator, you will need to think about whether you could spend all or most of your time on one level. This might involve repurposing a room or area to serve as your bedroom. Ideally, you would also have an accessible bathroom on the level. Keep in mind that you will still need to be able to enter and exit your home safely.

If living on the main floor is not a possibility either, you may need to talk with your family and ALS support team about the possibility of moving into a more accessible home or assisted living facility.

Bathroom Accessibility

Bathrooms tend to have tighter spaces and narrower doorways. If you use a walker and can still walk some on your own, you may be able to leave your walker outside of the bathroom and use strategically placed grab bars to safely maneuver around.

​Be sure to remove rugs, bathmats, and other tripping hazards. If you need to use a walker or wheelchair and are unable to widen the doorway enough for them to fit, you may need to transfer to a narrower rolling shower chair before entering your bathroom.

​Your ability to shower and bathe will depend on the configuration of your tub or shower. Smaller showers with lips can be challenging and may be inaccessible if you aren’t able to step up and over. Grab bars can be added to assist with safety and balance.

If you have a bathtub, you may be able to use a tub transfer bench or tub slider to help you transfer into and out of the tub. If you have glass shower doors, they will need to be replaced with curtains to accommodate the bench.

Wide roll-in showers offer the most accessibility and flexibility for shower chairs and patient (Hoyer) lifts. A barrier free roll-in shower is the safest option.

If you are unable to bathe in your existing bathroom, you may need to renovate, use a portable shower outside of your bathroom, or take sponge baths.

Another challenge can be using the toilet. Toilet safety frames, raised toilet seats, and toilet seat bidets can help, though some bathrooms may be too small if you need transfer assistance. Options for toileting outside the bathroom include commode chairs, rolling shower commode chairs, portable male and female urinals, condom catheters, and adult diapers. Learn about these and other devices on the Bathing Devices tab.

Safety and fall prevention in the bathroom are paramount. You can install grab bars near the toilet and shower as well as safety poles if needed.

Deciding to Renovate

If you are unable to make your home more accessible by using adaptive equipment and making smaller changes, you may want to consider remodeling the areas of your home that present the greatest challenges. Deciding to renovate is a personal decision that will depend on your finances, home layout, disease progression, care support, and other factors.

Home renovation projects can be disruptive to your daily lives and take longer than expected. They can also be expensive—and go over budget. Home accessibility renovations are not covered by insurance unless you are a U.S. military veteran.

When deciding which changes to make, it may be helpful to reflect on your priorities. What is most important to you? Accessing your shower? Getting outside easily? Spending time with others?

The most common renovation projects inside the home for people living with ALS involve the bathroom. These include widening the doorway, creating a barrier-free roll-in shower, installing a floating counter and sink for wheelchair accessibility, and adding more square footage if possible. Adding smooth, non-slip flooring can also improve safety and accessibility. Keep in mind that moving electrical and plumbing can result in significantly higher costs.

In addition to talking with professionals, try to get input from families affected by ALS who have already gone through this process.

Finding the Right Contractor

If you are going to do home renovations, you will want to find a trustworthy, licensed contractor with a good reputation who has either worked on accessible home modifications before or is at least familiar with ADA guidelines. Ask ALS Northwest, your ALS clinic, family, friends, and wider community for recommendations.

You can also try contacting the Home Modification Occupational Therapy Alliance, the National Directory of Home Modification and Repair Resources, your local Area Agency on Aging, local contractor/building organizations, or your Better Business Bureau. You might also want to look for reviews on Google, Angi, or HomeAdvisor.

Reach out to multiple contractors, listen to their proposed solutions, and get quotes. You can either hire one general contractor to coordinate everything or hire individual specialists like carpenters, plumbers, and electricians.

Once you decide on a contractor, ask for a written agreement that specifies the exact tasks, timeline, and cost. Ask for a smaller down payment with at least half of the payment due upon satisfactory completion of the project. If you could use assistance, ask a trusted friend or family member to help review the agreement and monitor the work.

Should I stay, move, or remodel?

​Everyone’s home and life situations are unique. To make the best decision for you, you will need to reflect on your home’s accessibility, quality-of-life priorities, financial resources, care support, and other factors. Before making any big decisions, try to get input from ALS professionals and possibly other families affected by ALS who might be able to offer insights into what has and hasn’t worked for them.

Some important questions to consider for now and into the future may be:

• ​How will I continue to get into and out of my home?
• What are the biggest safety hazards in my home?
• Will there be enough room for a walker or power wheelchair?
• How will I navigate steps and stairs?
• What are some easy and inexpensive changes I can make?
• What larger renovations might I need to make for long-term accessibility?
• What changes would my landlord allow me to make?
• Will smaller changes, equipment, and renovations make my home accessible enough to stay? Or would I be better off moving?

If ALS affects your ability to walk and move around your home and community, there are a variety of assistive devices that can help.

Acknowledging that you may need a walking aid or wheelchair can be difficult, but being realistic and getting mobility devices that match your current needs can help you stay safe, be more independent, save energy, and go where you want to go.​

​​If you or your loved ones have any concerns that your movements are unsteady, or that you are getting easily fatigued when moving around, meeting with your physical therapist is a good way to address these concerns. Getting the right device at the right time can help prevent falls and avoid injuries that could lead to additional complications.

Ankle Foot Orthoses (AFOs)

If you are having difficulty walking because your foot is dragging or catching on the ground, an ankle foot brace (AFO) or molded ankle foot orthotic (MAFO) can make a big difference.

​AFOs can help you walk more safely and efficiently by lifting your foot, stabilizing your foot and ankle, and improving your balance. Because many falls happen at home, physical therapists often recommend wearing AFOs inside your home as well as when you go out.

Walking Aids

Walking aids can assist you with balance, stability, and safety. They range from simple canes to four-wheel walkers with brakes and seats. If an AFO helps you walk better, you can wear it while using your walking aid.

​It is important to stop using walking aids when you feel like there is a likelihood that you may fall and get injured.

Canes can be helpful if you are starting to struggle with balance or find that you are relying on walls and furniture to help you move around your home. Some people prefer to use walking sticks instead of canes. 

Front-wheel walkers may help with balance and stability if your cane no longer provides enough support. People often move from a cane to a simple front-wheel walker, also known as a rolling walker, that has wheels in the front and gliders in the back.

Four-wheel walkers, also known as rollators, are sturdy walking aids that have handles, hand brakes, and a seat that allows you to sit and rest. If you are getting tired when using a front-wheel walker, or need more support, you would likely benefit from a four-wheel walker.

Upright rollators, also called platform walkers, are rollators that provide arm support. If you are benefiting from a four-wheel walker but are having difficulty with your arms, you might want to try an upright rollator. 

Keep in mind that you will need a ramp or lift to enter and exit your home if you have steps or a high threshold.

Manual and Transport Wheelchairs

If walking is becoming more difficult and exhausting when you are inside or outside of the house, you may want to consider getting a manual wheelchair that either your caregiver can push or you can propel with your hands or feet.

​Manual wheelchairs can be helpful for conserving energy, preventing falls, going long distances, and getting around outdoors.

​Because manual wheelchairs can be heavy and bulky, some people prefer lighter, more compact transport wheelchairs. Keep in mind that transport wheelchairs may be less comfortable for longer periods of time and are not as versatile on varied outdoor terrain.

Adding a cushion and/or back support can help you feel more comfortable in either a manual or transport wheelchair.

Power Mobility Options

If you need more mobility assistance than a walker or manual wheelchair can provide, there are a number of power mobility options.

Motorized scooters are similar to what you might see at the supermarket. They have a base for your feet, armrests, a swivel seat, and handlebars out front. You must have enough shoulder and trunk strength to reach out and operate the hand controls. ​Scooters are mainly used outside of the home and can be very useful for traveling about in the community. However, they are not designed for long periods of sitting, do not offer head or trunk support, and can make transferring difficult. 

Standard power wheelchairs provide more support than scooters and have a better turning radius within the home. Compared to a custom power wheelchair, it has limited adjustment possibilities and no ability to tilt or recline. It is usually hand-operated with a small joystick. A standard power wheelchair can be helpful for moving in or outside of the home. You will need a vehicle lift for the back of your car or a handicap-accessible van to transport it.​

Portable power wheelchairs provide many of the same functions as a standard power wheelchair and are also driven by a joystick. Portable power wheelchairs are popular because they are lighter and easier to transport. Some fold up. Others can be broken down into four or five manageable pieces. They are designed to be compact and fit into most trunks to make it easy for travel.

Custom power wheelchairs provide the greatest long-term comfort, support, and functionality. Their more advanced technology—including tilt, recline, power leg rests, alternate driving modes and controls, and integrated Bluetooth capabilities—can adapt to your evolving needs. The ability to tilt and recline can help relieve pressure to make you more comfortable.

Getting and Paying for Mobility Devices

It is important to be proactive and plan ahead so you don’t get stuck waiting for your next mobility device. The process of qualifying for, ordering, and receiving your custom power wheelchair, for example, can take 30-60 days or more.

Whenever you sense that you may need more mobility support, reach out to your ALS clinic or medical team. Your physical and occupational therapist can conduct evaluations and recommend the devices that will work best for you.

A number of the mobility devices on this page, including AFOs, walkers, manual wheelchairs, and custom power wheelchairs, should be covered by a combination of Medicare, Medicaid, and private insurance. Not all insurances, however, cover durable medical equipment fully, so find out what percentage your plan will cover. In order for your device to be covered, you will need to schedule a face-to-face evaluation with your neurologist so that your need can be properly documented.

If you will need to pay for some or all of the cost out of pocket, ask your ALS clinic and ALS Northwest if you can borrow devices from their equipment loan closet at no cost.

Transferring, or moving from place to place, becomes more difficult as the disease progresses and you lose muscle strength. Moving between chairs, getting on and off the toilet, and moving from the bed to a walker or wheelchair can become challenging for both for the person living with ALS and the caregiver.

If you are struggling with any type of transfer, ask the physical therapist (PT) or occupational therapist (OT) at your ALS Clinic or home health agency for suggestions. There are many different assistive devices and strategies that can help you move safely from place to place.

Transferring Safety

The most important thing about transfers is making sure you and your caregiver do them safely. Preventing falls and injuries must be the top priority when determining which devices and techniques will work best for you.

It is also important to recognize when a transfer method that used to work no longer does. If it feels like your transfers are becoming less safe, reach back out to your PT or OT to restrategize and discuss which transfer devices and techniques will be best moving forward. Contact your neurologist if you think you could benefit from transfer training in your home.

Independent Transfers

If you are starting to have trouble standing up, there are assistive devices and techniques that may be able to help you continue to get up and down on your own.

For starters, try raising your seat heights so that your hips are above your knees. This will give you a mechanical advantage that makes it easier to stand up while using less energy.

​​You can try adding solid cushions, foam blocks, or even patio cushions to raise your chair heights at home, but do not stack multiple cushions as they can slide or tip.

You can also add furniture risers under your sofa, if possible, to raise its overall height to make it easier to get up.

If you have arm strength, you can use chair armrests, a transfer pole, or a walker to help you stand. If your walker has wheels, be sure to lock them first.

If you need an additional boost, an uplift seat can actively help get you to a standing position. Uplift seats must be used on firm surfaces and may not be comfortable for long periods of sitting. 

A swivel seat cushion is a device that helps make transfers easier by spinning you to the left or the right. If your legs are weak, someone may need to help move your legs as your body turns. Swivel seats are particularly helpful for getting in and out of cars. 

Assisted Transfers

If you can still use some of your own arm and leg strength and need help from a caregiver, you will need to learn how to safely transfer with assistance. There are many different types of transfers, so you will need to use different methods and devices depending on your particular situation.

It is important to keep in mind variables such as the size and strength of the caregiver in relation to the size and strength of the person being transferred. If a caregiver feels that transfers are uncomfortable or unsafe without additional assistance, you will either need a second caregiver or a patient (Hoyer) lift.​

If you need transfer assistance, you should use a gait belt or transfer belt so the caregiver has something secure to grasp. Caregivers should not grab arms, clothing, or belt loops during transfers.  

If you can stand with assistance but have trouble lifting or turning your feet, a pivot disc can help you slowly rotate 90 or 180 degrees before sitting down again on a chair, wheelchair, or toilet.

Another way to move from one seated position to another is by using a transfer board. This simple board becomes a bridge between where you’re seated and where you’re going. You can scoot across the board with or without assistance.

If scooting across a transfer board is challenging, you can try a Beasy Board, which is a transfer board that has a gliding, rotating seat that helps minimize lifting, tugging, and twisting.

Lift chair recliners and power wheelchairs can also help with assisted transfers by mechanically raising you up and tilting you forward so that you’re already closer to a standing position.

​Other than Medicare paying for part of a motorized lift chair recliner, most transfer devices are not covered by insurance. Ask your ALS clinic or ALS Norhtwest if you can borrow transfer devices at no cost from their equipment loan closet. You can also visit Your ALS Guide's Transfer Devices page to learn more and purchase them directly.

The popular, motorized lift chair recliner can help you move between reclining, sitting, and lifted positions. Many people living with ALS find lift chair recliners comfortable and helpful for transferring.

Tips for Assisted Transfers

• Prepare the destination. Limit the distance of the transfer and remove any potential hazards.
• Lock wheels on walkers, wheelchairs, and rolling chairs.
• Don’t rush. When possible, give yourself the time you need to transfer so that nobody feels rushed.
• Try to be patient. Develop a plan. Before transferring, have a system in place so everyone is on the same page. Count to three and then move together.
• Start higher when possible. Transfers will be easier when the person is sitting higher. A raised toilet seat, chair cushion, or lifted recliner can make transfers easier.
• Use a gait/transfer belt. Make sure you have a secure place to hold. Do not grab onto the person’s clothing, belt loops, or arms.
• Stand close. The caregiver should stand close to the person being transferred, often in front and a little to the side. Leave room for the person to stand and face the transfer destination.
• Widen your stance. For greater stability, caregivers should start with feet wider than hip distance apart.
• Bend with your knees. For greater power and to prevent back injury, caregivers should bend at the knees and use leg strength.
• If it’s not going well, stop. If you are struggling in the middle of a transfer, stop and go back to where you started. Reevaluate and either try again or use a different method.
• Conserve energy. Transfers can be exhausting and time-consuming. When possible, try to think ahead so you can avoid any unnecessary transfers.​

​Every transfer situation is different. These are general tips—not step-by-step instructions. Always consult with and get training from your physical or occupational therapist.

Transferring with a Patient (Hoyer) Lift

If you are unable to help bear your own weight and your caregiver(s) cannot safely lift you on their own, you will need to transfer using a patient lift (commonly called a Hoyer lift). While you are seated or lying in a sling, this very helpful device lifts and transfers you between your bed, wheelchair, recliner chair, etc. Should you ever fall, your patient lift can also help lift you off the ground. 

There are also sit-to-stand lifts, which can help transfer you from one seated surface to another, but these lifts are only helpful if you have some mobility but lack the strength or muscle control to rise to a standing position on your own.

When you receive your patient lift, your neurologist should arrange for a PT or OT to come to your home to train you. Learning to use a patient lift can be tricky, so you may also want to practice on someone else until you feel comfortable with it.

Patient lifts have wheels, so theoretically you could roll from place to place while the person is sitting in the sling. However, it can be hard to roll patient lifts across carpet or over rugs or thresholds. Patient lifts are also big and wide, so they may not fit through doorways or inside bathrooms.

Depending on your daily routine and home accessibility, there are multiple ways to use a patient lift. If your bathroom is accessible, you have no clothes on, and are in a divided-leg mesh sling, you could transfer from your bed into the lift, roll over the toilet to use it, and then roll straight into the shower. If the lift won’t fit in your bathroom, you could transfer to a bedside commode chair, or transfer to a rolling shower-commode chair and then enter the bathroom.

Therapists often recommend a divided-leg sling, also known as a U-shaped sling, for people living with ALS because it can be slipped behind and under the person without having to lift them all the way up. Divided-leg slings also leave an opening below so that you can relieve yourself while still in the sling. Full slings can be helpful if you are connected to a ventilator and cannot sit fully upright.

Full and divided-leg slings come in mesh, which is best for getting wet in the shower. Slings come in different sizes and should be ordered with a head support, when possible, for both comfort and support.

Patient lifts can be operated by one caregiver, though it may be challenging if the person in the lift is much bigger than the caregiver. You may need two people if the person being lifted is on a ventilator.

There are both manual and electric patient lifts. Manual lifts have smaller footprints and don’t need to be charged, but you will need to pump the hydraulic lift by hand.

Ceiling lifts are another option that can be helpful for transferring, but they are less versatile and mobile than patient lifts and are not covered by insurance unless you are a military veteran receiving service-connected benefits.

There are some general transfer tips for patient lifts such as widening the base for stability, locking the wheels, and positioning the bar so it doesn’t hit the person in the head, but because every lift and situation is unique, be sure to get trained by a local professional. The video demo on this page should give you a good sense of how to use a patient (Hoyer) lift.

Ask your medical team when you might qualify for a patient lift. Most insurances will cover the manual lift but not the electric one. If you prefer an electric lift, ask the durable medical equipment (DME) company if you can just pay the difference between the manual and electric model. Sit-to-stand lifts are usually not covered by insurance.

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.

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.

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 the Dressing tab for tips.

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 ALS Northwest if you can borrow them at no cost from their equipment loan closet. You can also visit Your ALS Guide's Toileting Devices page to learn more and purchase them directly.

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 the Transferring tab 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 the Home Accessibility tab to learn about your options.

As bathing becomes more challenging, there are a number of strategies and devices that can help you get clean while staying safe, conserving energy, 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 for what will work best for you and your bathroom configuration.

Bath and Shower Safety

In the bathroom, safety should be your top priority. If you are having doubts about the safety of your current bathing routine, reach out to your PT or OT for suggestions. If they have not seen your tub/shower setup, you can describe it to them or even send photos or videos.

If no one from your clinic or ALS Northwest can do a home visit, ask your PT or OT and neurologist if they can arrange a home safety evaluation by a professional from a home health agency. That person will visit, assess the safety and accessibility of your home (including your bathroom), and make recommendations such as using assistive devices or placing non-slip mats in your tub or shower. This evaluation should be covered by insurance.

Bathing Independently

There are a number of devices that can help you continue to bath independently if you are feeling unsteady or getting fatigued while bathing or showering. For example, installing grab bars in and near your tub or shower can help with balance. Permanent grab bars with screws are safer than suction-cup grab bars, which can be unreliable. ​

Standing while taking a shower uses more energy than you may realize. Sitting down in a shower chair while getting clean can help you prevent falls and save energy for other activities. While sitting, you can use a hand-held showerhead to direct the flow of water. 

If you are having trouble scrubbing, reaching down, or cleaning certain parts of your body, you can try devices like long-handled sponges, luffa sponges, or bath mitts. If it is challenging to get soap and shampoo out of their original bottles, transferring them to wall-mounted pumps may make it easier to dispense. 

If you are concerned about safely stepping over the tub or lip of the shower, you can use a tub transfer bench or tub slider to slide into the tub and then remain seated on it while bathing.

Bathing with Assistance

If you no longer feel safe bathing on your own with these devices, or if you find the process too exhausting, it is probably time to ask for assistance from a caregiver, whether a family member, friend, or professional.

If you need assistance getting over the tub and showering, your caregiver can either use a tub transfer bench or tub slider with a swivel seat to help bathe you safely. If you have solid sliding doors, you will need to replace them with a shower curtain in order to use these devices. 

If your mobility has become more limited, you may need to be transferred to a rolling shower commode chair and then wheeled into a barrier-free shower. Because space in bathrooms is often tight, it may be easier to transfer into the chair before you enter the bathroom. You can also roll the same chair over the toilet to relieve yourself before or after your shower. 

If you feel you need more trunk and neck support than a standard rolling shower chair can provide, a tilt-in-space shower chair with an adjustable headrest will provide greater support. 

If there is enough room in your bathroom, you can roll your patient (Hoyer) lift into the shower and take your shower while hanging in a mesh sling.

If you have a feeding tube, you can shower with it uncovered within one to two days after it is placed. Water and soap can gently run over the tube, but do not let the water stream spray directly onto the tube or tube site. When done, gently pat everything dry, especially under the bumper.

If you have a tracheotomy and can tolerate being off the ventilator for the time it takes to bathe, you can use a handheld shower to direct water away from your trach site, which must not get wet. There are commercially available shower shields to help keep the trach site dry. You can then carefully wash your neck once you’re out of the shower. If you need to stay connected to your ventilator, you will need to use an alternate bathing method like getting a sponge bath because you cannot get the ventilator or electrical cords wet.

If you feel that bathing every day is too exhausting or too time-consuming, you could choose to save the time and energy by bathing less often. 

Bathing devices are not usually covered by insurance. However, we offer use of many devices at no cost from our equipment loan closet.

Bathing Outside of the Bathroom

If getting to the tub or shower is not possible, there are other ways to get bathed and stay clean. Options include using a wheelchair-accessible portable shower stall outside of your bathroom or setting up an inflatable bathtub on your bed. You can get your hair washed either in bed with a shampoo basin or while in your wheelchair by attaching a hair washing tray to the sink.

If you need to get bathed in bed, an occupational therapist or nurse can visit to train your caregiver on proper positioning and techniques for giving a sponge bath or using body wipes. No matter how you do it, it is important to continue to stay clean and practice good hygiene.

Do you need to renovate your bathroom?

Before rushing to renovate your bathroom (and spending a lot of money), meet with your OT or PT to find out if there are assistive devices that might work well with your current bathroom configuration.

If you have leg weakness and can’t step over the tub, for example, you might be best off keeping your tub and using a tub slider. If, on the other hand, you need a rolling shower commode chair, you may need to replace your bathtub with a barrier-free shower, if possible. And if you have a stall shower with a lip, you may be able to replace it with a flexible barrier that can be rolled over.

If you don’t think your current bathroom configuration meets your current or future needs, you can learn about your options on the Home Accessibility tab.

As ALS progresses, you may notice that everyday activities like combing your hair or brushing your teeth are becoming more challenging. There are a number of strategies and devices that can help you continue to perform these tasks independently, while saving energy. The occupational therapist at your ALS clinic, outpatient occupational therapy, or home health agency should be able to assess your challenges and make individualized recommendations for you.

Grooming and Personal Hygiene Activities

It is important to have a sturdy place where you can sit down and access the things you need in your bathroom. This might be a chair, wheelchair, rolling shower chair, or even the seat on your four-wheel walker or rollator. If you are sitting on something with wheels, be sure to lock the wheels or engage the brakes.

​It can also be helpful to rest your arms on the counter if they feel tired or weak when you are doing things like shaving or brushing your teeth.

Here are some assistive devices that may help you with grooming activities:

• If you are having a hard time operating the sink, you could install a touchless faucet or make modifications like adding knob adapters or replacing knobs with levers. 
• If you are having trouble holding onto a washcloth, you can try using a bath mitt or even two washcloths sewn together that form a pocket for your hand. 
• If you are unable to safely use a regular disposable razor, you can try using a lightweight electric razor instead.  
• If you are having trouble cutting your nails, there are electric nail clippers as well as manual clippers on suction cup mounts. 
• If brushing your hair is challenging, there are thick-handled and long-handled brushes as well as brushes with loop straps that make them easier to hold. 
• If blow drying your hair is difficult or tiring, you can save energy by placing your blow dryer in a blow dryer mount.  

Modifying the way you do your grooming activities and using assistive devices like these can help you save energy and continue to do these tasks on your own for longer.

​If you notice that certain activities are taking longer than normal or are using more energy, you can ask your caregiver for help. Whether you do these activities independently or with assistance, it is important to continue to take care of your body and practice good hygiene.

​If you attend an ALS Clinic or are connected with ALS Northwest, ask if they have grooming devices you could try before deciding to purchase them.

Oral Hygiene and ALS

Maintaining good oral hygiene is important for everyone, but it is especially important for people living with ALS. Unaddressed plaque and bacteria growth can lead to gum disease, thrush (an oral yeast infection), respiratory infections, and other issues.

If maintaining good oral hygiene is becoming challenging, share your concerns with your neurologist, speech language pathologist, or occupational therapist. You can also ask your dentist for suggestions. If going to the dentist’s office is inconvenient or not possible, find out if there is a mobile dentist in your area who could come to your home.

​Here are some assistive devices that your occupational therapist may recommend to help you with oral hygiene:

• If you have arm strength but are having trouble gripping a regular toothbrush, you can try wrapping foam tubing or anything else around the handle to make it easier to grip. If you can’t grip the larger handle, you can slip your toothbrush into a universal cuff.
• If you are having trouble cleaning your teeth well with a manual toothbrush, or find it tiring, you can try using an electric toothbrush as long as it does not feel too heavy. 
• If you are choking on saliva and toothpaste while brushing, you can connect a suction toothbrush to your suction machine to prevent saliva and toothpaste from pooling in your mouth.
• If you are struggling to get toothpaste out of the tube, you can try using a toothpaste dispenser.
• If flossing is challenging, try using a flosser with a handle. If the flosser is hard to hold, you can add foam tubing or anything else to the handle to make it easier to grip. 
• Oral mouth swabs can help by gently massaging your gums, moistening your dry mouth, and removing bits of food, plaque, and excess fluids. 

Other things that you may find helpful for maintaining good oral hygiene include Biotène Dry Mouth Oral Rinse, water pics, and electric tongue cleaners. You may need to look around for the right devices that will meet your specific needs. Ideally, they will be lightweight, portable, and easy to use.

Modifying the way you do oral hygiene activities and using assistive devices can help you save energy and continue to do these tasks on your own for longer. However, if you notice that certain activities are taking longer than normal or are using more energy, you can ask your caregiver for help. Whether you do these activities independently or with assistance, it is important to continue to maintain good oral hygiene.

As your muscles weaken, getting dressed by yourself can become challenging and exhausting. There are a number of strategies and assistive devices that can help you continue to get dressed on your own. As different challenges arise, ask the occupational therapist at your ALS clinic, outpatient occupational therapy, or home health agency for suggestions.

Wearing Clothes that Work for You

If you find that it is taking longer than you would like to get dressed, you may need to make some modifications to your current wardrobe and/or find some new clothes that work better for you. Many people, for example, find that wearing pants or skirts with elastic waistbands are easier to pull up and down.

Ideally, you will find clothes that you feel are both functional and fashionable. Companies like Silverts and Tommy Hilfiger sell adaptive clothing that is easier to put on and take off.

​If buttons or zippers are difficult, there are ways to modify your clothing, such as adding larger zipper tabs or key rings and replacing buttons and zippers with magnets or Velcro. Your local tailor should be able to make these and other modifications.

Finding Footwear that Works for You

Finding the best footwear for you will depend on your current needs and mobility. If you are walking with or without a walker and have foot drop, you’ll want to avoid footwear like flip flops that are going to increase your chances of tripping and falling. If you are walking with an ankle foot brace (AFO), your best option will probably be supportive athletic shoes with laces. When it comes to footwear, safety and stability must come before fashion.

​If you are having trouble tying your shoes, you could replace your laces with elastic shoe laces, which will essentially convert your shoes into slip-ons because you’ll only need to tie them once. You may also want to try slip-on shoes or shoes that fasten with zippers or Velcro. There are also adaptive shoe brands such as Kizik, Friendly Shoes, and Zeba Shoes that make shoes that are easier to put on and take off.

If your feet swell or if you wear AFOs, you may want to research shoe brands like Billy Shoes that offer extra-wide sizing. To decrease swelling, you can try wearing compression socks, but you will first want to talk with your physical therapist, occupational therapist, or neurologist about the amount of compression needed and which type of socks will be best for you. If you find regular compression socks hard to take on and off, you can try compression socks with zippers.

Dressing Tips and Devices

When getting dressed, make sure that you are in a stable, comfortable position that can help you save energy. Sitting on the edge of your bed or on an armchair may be helpful if standing while dressing feels unsteady or tiring. Some people find it easier to lie down while putting on some clothes.

​When putting on shoes or socks or pulling up your pants, try to avoid bending over at the waist, as this can cause shortness of breath and expend more of your energy. If you are having trouble pulling up tight pants or jeans, for example, you can try using a reacher or dressing stick.

If you are finding it harder to put on and pull up your socks, you can try using a sock aid. If you are having trouble slipping your shoes on without bending over, a long-handled shoe horn might help.

If you are having a hard time putting on shirts, a dressing stick may help. If one arm is stronger than the other, put the weaker arm in first so your stronger arm can do most of the work. And if you are having trouble buttoning or zipping, a simple button hook / zipper pull may help you continue to get dressed independently.

Some other things that may help you get dressed independently include wearing bras that fasten in the front, using suspenders to help pull your pants up, and adding loops to the waistbands of pants.

If you are still struggling to get yourself dressed—or find that it is taking too long or using a lot of your energy—ask your caregiver to assist with some or all of these dressing activities.

As ALS progresses, you may notice changes in your ability to chew, swallow, or feed yourself. If this becomes a concern, reach out to your ALS clinic or medical team for guidance. Your speech language pathologist (SLP), occupational therapist (OT), and dietitian can help you find ways to eat safely and more independently while maintaining your weight.

ALS Food Safety and Modification

The type of food and liquid you consume and how it is prepared will play a big role in your ability to stay safe while eating and drinking.

Finding out what works for you at each stage of the disease may be a process of trial and error. Whenever something changes or feels unsafe, reach back out to your SLP, OT, and dietitian to restrategize.

​​If you find yourself choking on thin liquids like water, tucking your chin while taking one sip at a time may solve the problem.

If you are still choking, you can try thicker liquids like smoothies and nectars. You can also add thickeners to thin liquids like water and juice to add more density so they don't go down the wrong pipe.

​If you are struggling to drink enough water and stay hydrated, ask your medical team for suggestions.

​If chewing is becoming difficult, try eating softer food and cutting it up into smaller pieces. You can also purchase a blender like the Magic Bullet that can chop up your food instead of liquefying it.

​If you are having trouble swallowing, it will also help to eat softer food and cut it up into small bites. Try to avoid foods that are difficult to swallow and food that could get stuck and block your airway. If this does happen, your caregiver will need to dislodge the food using abdominal thrusts, also known as the Heimlich maneuver.

Food with mixed consistencies like hard cereal and milk can cause choking because while you chew the cereal, the milk may slip down the wrong pipe. This can also happen when eating fruit like peaches that quickly separate into flesh and juice.

​Adding sauces and gravies to food can help it go down more easily. If you do get something caught in your throat that isn’t blocking your airway, you can try taking a bite of applesauce to help it slide down.

In addition to choking, another safety concern is aspiration, which is breathing food or liquid into the windpipe or lungs. If you’ve been aspirating and develop flu-like symptoms, possibly with a cough, you may want to get a chest X-ray to check for pneumonia, which can become serious for people living with ALS.

​While keeping safety in mind, try to find ways to keep your meals tasty and enjoyable. Ask your SLP or dietitian about ALS-friendly recipes and other food preparation tips.

Getting the Calories You Need

People living with ALS often struggle to consume enough calories to maintain their regular weight. Daily activities require more energy and calories than before, and when eating becomes more challenging, people tend to consume fewer calories. The resulting weight loss can lead to accelerated muscle deterioration, weakness, low energy, and other issues.

​If you are struggling to maintain your weight, your dietitian will likely suggest ways to increase your caloric intake without eating a significantly larger amount of food each day. This can be done by eating high-protein foods, consuming more healthy fats such as avocados and olive oil, and adding high-calorie items like butter, sugar, honey, and whole milk to your meals.

​If you are still unable to maintain your weight, you will want to discuss getting a feeding tube with your medical team. 

Staying Hydrated

People living with ALS often struggle to consume enough liquid. Reasons may include choking when drinking water and wanting to minimize trips to the bathroom. But staying hydrated is critical to staying healthy and avoiding dehydration symptoms such as constipation, weakness, headaches, and thicker saliva, which can make swallowing more difficult.

​It is important to develop a system to make water readily accessible whenever you feel thirsty. There are a variety of assistive devices that can help.

If you are having trouble grasping, you can try using a lightweight cup with one or two handles. If you have a favorite beverage container such as a cup, glass, bottle, or can that doesn’t have a handle, you can strap on a universal drink holder with an adjustable steel handle.

​If you are not able to raise a cup to your mouth but can form a seal around a straw and have the strength to suck fluids up, you can try using a long straw or the Giraffe Bottle, which has a long, flexible straw.

​If you have trouble reaching your mouth to the straw, you could set your cup or water bottle on something like an overturned bowl to raise its height. You can also add cup holders on your wheelchair and next to your bed. Another solution could be keeping a water bladder like a Camelbak with you.

If you are finding it hard to sip water up through a straw, you can try using a one-way-valve straw that keeps the liquid at the top of the straw, which can make it easier to drink and help you save energy.

Eating Independently

In addition to modifying the type of food you eat and how you prepare it, using assistive devices to get food to your mouth is the other key that can help you continue to eat independently. Your OT can assess your challenges and propose solutions.

If you are finding it difficult to grasp utensils, a utensil with a wider grip may help. You can either purchase built-up utensils or make your own by adding foam tubing to your own forks, knives, and spoons.

If you have arm strength but are unable to grasp utensils, you can put on a universal cuff and tuck the utensil into it. If your wrist is also weak, you can get a cuff with wrist support. And if you are having trouble getting food into your mouth at the right angle, you can try a bendable utensil.

​​If your arms or shoulders are getting tired when eating, you can try using lightweight, plastic utensils and/or sit at an angle so you can prop your elbow on the table. You can also try using a mobile arm support that clamps onto the table and supports your arm.

​If you are having trouble scooping food off your plate, a scoop dish or clip-on food guard can make it easier to get food onto your utensil. If your bowl or plate keeps sliding on the table, you can set it on non-slip gripping material or purchase a plate or bowl with a suction cup.

​If you are having trouble cutting your food with a standard knife, you can try using a rocker knife or a pizza cutter. If those don’t work, ask your caregiver to cut your food into small pieces before each meal.

​If none of these assistive devices can help you eat on your own, the Obi robotic feeding device can scoop food for you and place it in your mouth.

​These assistive eating devices are not covered by insurance. However, you can ask your ALS clinic or ALS Northwest if you can borrow them at no cost from their equipment loan closet.

Eating with Caregiver Assistance

If you are still able to chew and swallow safely but are unable to feed yourself, you can eat with the assistance of a caregiver. Caregivers will need to modify food, cut it into bite-size pieces, and scoop up each bite.

Getting Nutrition through a Feeding Tube

If you are still having trouble eating or swallowing, are getting overly fatigued while eating, or are losing weight, it may be time to consider receiving some or all of your nutrition and hydration through a feeding tube.

​At some point, most people living with ALS elect to get a feeding tube, which involves a short surgical procedure followed by training from a dietitian.

A feeding tube can help ensure that you are well nourished, well hydrated, and don’t lose any more weight. You can still enjoy tasting food by mouth whenever you like, but your main source of nutrition will come from your feeding tube.

This can help make your meals less stressful and more pleasurable. Using a feeding tube can also reduce your risk of choking or having food and water go down the wrong pipe.

If pills and vitamins are hard to swallow, you can get some medications in liquid form or crush and administer them through the feeding tube as long as they are crushable.

Your neurologist, SLP, and dietitian can discuss the pros and cons of feeding tubes with you as well as when you should consider getting one.

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.

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 the Transferring tab 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.

When living with ALS, everyday activities like bathing, dressing, grooming, and eating can use a lot of energy. The physical and occupational therapists at your ALS Clinic or home health agency can suggest strategies and recommend assistive devices that can help you conserve energy so you can continue to do the things that are most important to you.

​Physical and occupational therapists often use the analogy that you begin each day with a full tank of gas (or charged battery), and that you will need to decide how you want to spend that energy. Understanding that your energy level may be different each day, it can be helpful to begin by reflecting on your priorities. How do you want to spend your energy? What is most important to you?

If you notice that certain daily activities like dressing​ or grooming are taking longer or requiring more energy, you can ask your caregiver for assistance. If you find that some nonessential activities require a significant amount of energy, you can choose to not do them at all, or ask for assistance. For the things that you really want to do, you can try to find more efficient ways to do them. The idea is to work smarter, not harder.

​In addition to prioritizing, it is important to be mindful of your typical energy levels when planning future activities. Try to be realistic about how much you can do in a day without overexerting yourself. Try to schedule time for naps and rest so you can recharge between activities as well as between busy days.

Energy Conservation Strategies and Devices

One way that you can save energy every day is to sit instead of stand when doing things like dressing, bathing, and grooming. Once seated, position yourself so you can rest your arms or elbows on the table, desk, or counter for support. If you are able to sit on a seat where your hips are higher than your knees, it will require less effort to move between seated and standing positions.

If you notice that you’re getting more tired when walking, you can use walking aids for greater support and endurance. For longer distances, you can save energy by using manual or transport wheelchairs.

You can also conserve energy by developing systems and thinking ahead about what you will need to carry or move around your home. To limit unnecessary trips up and down stairs, for example, you could put things in a basket that will need to go up or down at a later time. It can also be helpful to keep the main things you will need throughout the day in a bag or pouch on your walker or wheelchair.

​Transferring between your bed, wheelchair, chairs, recliner, and other locations can use up a lot of your energy. Your physical and occupational therapists can teach you transfer strategies and recommend transfer devices that can help you move from place to place more efficiently and safely. Also, when possible, try to think ahead so you can avoid any unnecessary transfers.

​If your neck muscles are getting weaker and you are finding it hard to hold your head up, a neck brace, or cervical collar, can help support the weight of your head. You can also try positioning yourself in a way that takes the load off your neck muscles, such as tilting back in a lift chair recliner while using a U-shaped travel pillow to support your head.

​You can also put the things you use most often in places that are easily accessible to you. This may mean reorganizing drawers and shelves and leaving some things out on the bathroom counter.

Rejuvenating with Breathing Support

As the disease progresses and the muscles around your diaphragm weaken, you may notice that you have more trouble breathing at night while lying down. Using a bilevel machine (commonly called a BiPAP) at night can help you breathe better, sleep better, and have more energy the following day. You can also use a bilevel (BiPAP) machine intermittently during the day to rejuvenate and give your diaphragm a rest.

​Your respiratory therapist should be monitoring your breathing and recommending specific respiratory devices as you need them.

Finding Ways to Recharge

It is also important to find ways to manage and boost your energy level. In addition to recharging by taking naps and breaks and using a bilevel machine, getting a good night’s sleep can improve your mood and give you more energy for the day.

Making sure you are consuming enough calories every day, which can be challenging for people living with ALS, is very important. Your dietitian, speech language pathologist, and occupational therapist can recommend strategies and devices that can help your body get the calories and energy it needs.

In general, whenever you feel the need to recharge, remember that it is okay to reschedule or change plans, modify your activities, delegate tasks, and ask for assistance.

Mental health refers to our emotional, psychological, and social well-being. It affects nearly every facet of our lives, including how we feel, think, act, and relate to others. When you’re living with a disease like ALS, it is important to remain aware of how you’re feeling and seek support when you need it. Tending to your mental health can have a positive impact on your day-to-day quality of life.

Keeping in mind that everyone will cope and adjust differently, the rest of this page explores potential challenges to your mental health and suggests ways you can improve your mental, emotional, social, and physical well-being.

Developing a Strong Support Network

Perhaps the most important thing you can do is develop a strong support system that can help guide and support you throughout your ALS journey. For medical support, it is essential to find a team of ALS medical professionals, ideally at an ALS clinic, that can monitor your health, provide care, and make recommendations for equipment and other interventions.

ALS Northwest can also provide support, connect you to resources, and answer your questions.

​On an emotional level, many people impacted by ALS find it helpful to attend ALS support groups where they can connect with and learn from others facing similar challenges. Some people prefer instead to rely on close family and friends for emotional support.

On a logistical level, developing a network of family, friends, and services that can help with everything from care coverage to chores can help reduce stress for everyone.

Staying Connected with Others

When living with ALS, it is not uncommon to feel physically or emotionally isolated and disconnected from others. Yet socializing and maintaining relationships is often what brings us joy and lifts us up during hard times. A decades-long Harvard research study on happiness concluded that the most important factor in a person’s happiness is continued relationships and connections with others.

As ALS progresses, it can become more difficult to socialize and communicate with others. With the right mobility equipment and communication devices, there are ways to either socialize in person or connect with others via video, phone, email, text, or social media.

Practicing Self-Care

When living with ALS, there are a number of things you can do to improve your overall well-being. Getting good nutrition, for example, can help you maintain your weight and have more energy. Finding ways to sleep better can improve your mood, energy level, and overall outlook on life. Doing range of motion and stretching exercises can help you maintain greater flexibility and experience less pain and discomfort each day.

Following your ALS medical team’s recommendations, such as getting and using prescribed mobility and respiratory devices, is another way to improve your quality of life.

Being Open to Counseling

The physical challenges of living with ALS are so great that they often receive the most attention. But the psychological challenges and overwhelming emotions brought on by ALS deserve equal attention and support.

If you are struggling with overwhelming emotions, anxiety or depression, or if you are just finding it hard to make it through each day, a skilled counselor or therapist can work with you to develop insights, coping skills, and techniques that can help you better manage your current and future challenges.

There can be a stigma around going to “therapy,” asking for help, or even just acknowledging that you may be struggling to cope. Asking for help is not a weakness, and working with a trained mental health professional can be the key to finding peace of mind and a renewed sense of control over the areas of your life that you can control.

“The psychology of learning how to live with the disease is really, really important,” says Joel Goldhirsh, former wealth fund manager living with ALS. “If you need a therapist, get a therapist. There's nothing wrong with it. It's a horrific disease, and if it's going to help you and your relationship with your partner, spouse, or friends, it’s money well spent, time well spent.”

If you think you could benefit from mental health support, reach out to your ALS medical team for suggestions. Some but not all ALS clinics offer mental health services. If your team does not, ask if they can recommend a skilled professional who has experience working with people either living with ALS, a disability, or another chronic or terminal illness.

Check the mental health benefits on your insurance plan to see what is covered. Some therapists may be out-of-network and others may not accept any insurance. If you are concerned about being able to pay for counseling, ask your ALS medical team if they have any suggestions or know of any free or reduced-cost mental health services in your area.

Addressing Anxiety

When you are diagnosed with ALS, it is normal to worry about what will happen to your body, your family, your finances, and other aspects of your life.

However, if you begin experiencing symptoms such as heart palpitations, shortness of breath, or uncontrollable worrying thoughts that disrupt your sleep, well-being, or ability to think clearly, it is important to discuss these symptoms with your ALS care provider. These may be symptoms of anxiety, and severe anxiety can have a significant impact on your quality of life.

If you think you could use help or guidance, start by reaching out to your ALS neurologist and ALS medical team. Contact your clinic coordinator between visits or talk with your social worker and neurologist during your visit.

Your neurologist or mental health professional might suggest taking a medication that can help ease symptoms of anxiety. Many people diagnosed with ALS have found that medication has helped them sleep better and feel more like themselves again. Accepting this help could improve your quality of life during this difficult time.

If you decide to take medication, do so under the guidance of your ALS neurologist, primary care doctor, or mental health professional. It may take some adjusting to find the right medication and dosage that works best for you.

You may also want to ask to meet with a mental health professional like a licensed counselor, social worker, psychologist, or psychiatrist to talk about strategies for reducing your symptoms. Your ALS clinic or ALS Northwest may be able to recommend a mental health professional in your area who has experience working with people living with a disability or chronic or terminal illness.

Identifying and Treating Depression

Some studies have suggested that people living with ALS are at a greater risk of developing clinical depression after their diagnosis. Clinical depression is more than just feeling sad or “depressed” at times. It is a medical condition that impacts how you feel, think, and handle daily activities.

​Clinical depression can include symptoms such as:

• Persistent feelings of sadness
• A loss of interest in hobbies and activities
• Pulling away from others
• Negative thinking
• Disturbed sleep patterns
• Difficulty concentrating
• Feelings of hopelessness

​There can be other symptoms as well. Most importantly, if you or your loved ones are concerned that you might be depressed, contact your ALS neurologist to share your concerns and create a plan to help you feel better.

Depression is not a character flaw or sign of weakness. It is a common, treatable medical condition that can be triggered by any number of causes, including being diagnosed with a chronic disease like ALS.

Depression is often treated by a combination of therapy and medication. Cognitive behavioral therapy is one method that can teach you how to manage negative thoughts and develop coping skills that you can use to break out of depressive states. Antidepressant medication can improve the way your brain uses certain chemicals that control your moods and help you handle stress.

Reaching out to others is the first step to getting unstuck and finding a new path forward. Learn more about depression from the Mayo Clinic and National Institutes of Health.

Monitoring Cognitive and Behavioral Changes

​Some people diagnosed with ALS can experience cognitive changes in addition to physical changes. Recent research indicates that this can occur in up to 50% of those living with the disease. It can be helpful for you and your loved ones to be aware of this possibility so you can identify and address issues if they arise.

​For most, this means gradual and subtle changes in thinking and behavior over time. But for some, possibly up to 15% of those diagnosed with ALS, it can mean the more noticeable symptoms of frontotemporal dementia (FTD), such as inappropriate behavior, irritability, impulsivity, poor judgment, and impaired social skills. People affected by FTD may not be aware of these changes to their thinking and behavior.

If you or your loved ones are concerned about cognitive or behavioral changes, tell your ALS neurologist. Either your neurologist or a neuropsychiatrist will be able to evaluate you and make a diagnosis. This is important because when people are experiencing symptoms of FTD, they may be less able to make sound decisions and comply with important medical recommendations.

​An FTD diagnosis can prompt loved ones to take a greater role in coordinating medical care and helping make medical, financial, and other decisions.

Understanding Pseudobulbar Affect

Some people living with ALS experience pseudobulbar affect (PBA), which is a condition characterized by sudden and unpredictable episodes of laughing or crying that are difficult to stop. Though it can make social interactions challenging, pseudobulbar affect does not necessarily mean that a person has cognitive, behavioral, or emotional issues.

If you are experiencing inappropriate expressions of emotion, talk with your ALS neurologist. There are medications available that can be effective in managing the symptoms of PBA.

Finding Quality of Life

Receiving an ALS diagnosis is shocking, life-changing news. It is common to feel overwhelmed by powerful emotions like fear, anger, sadness, and grief. Yet at some point, many people begin to accept the diagnosis and adjust to their new reality of having this illness.

​Once this begins to happen, the question can become: How will I choose to live my life with ALS?

​ALS does not have to define who you are or consume your every thought. You may have little control over how ALS affects your body, but you do have some control over how it affects your mind and outlook. Your approach to living with the disease will play an important role in your quality of life.

In addition to practicing self-care, developing a strong support network, staying connected with others, and seeking help when you need it, you can reflect on what quality of life means to you. Does it include spending time with your family and friends? Continuing to work? Enjoying old hobbies or new pursuits? Traveling? Seeking peace through religion or spirituality?

As ALS progresses and muscles weaken, less movement each day can lead to tightness, stiff joints, pain, and discomfort. This can affect your mobility, flexibility, and ability to complete daily activities.

You can reduce this joint stiffness and maintain greater flexibility by stretching and doing range of motion (ROM) exercises, which are slow movements that target specific parts of the body such as your neck, shoulders, elbows, wrists, fingers, hamstrings, knees, calves, and ankles.

Developing Your Stretching and Range of Motion Routine

It is important to create a stretching and range of motion exercise plan that is tailored to your specific needs. Ideally, you will find someone with ALS experience, like the physical or occupational therapist at your ALS clinic or home health agency, who can develop a custom routine and teach you and your caregiver how to properly do each exercise.

You can stretch and do ROM exercises on your own or with the help of a caregiver. Some people find that even if they are capable of doing them on their own, they feel a greater benefit when someone else is assisting so they can relax throughout. If you can do the exercises on your own but are getting overly fatigued, you may also want to ask for assistance.

If you cannot do parts of the movements or stretches on your own, a caregiver or therapist can assist as needed. If you are unable to assist with the movements, your caregiver or therapist can do them for you. When possible, sit or lie down to conserve energy while doing your exercises.

Keeping in mind that everyone’s individual plans will be different, here are some general guidelines for doing range of motion exercises:

• Stretches and ROM exercises should be slow, steady, and gentle.
• Do not force movements or push past the point of resistance.
• Back off if you feel pain, discomfort, or fatigue.
• Make sure that you can breathe comfortably throughout.
• If you cannot complete the full routine, start with a few repetitions and build up from there.
• When stretching, slowly move to the point of resistance and hold as advised.

You will get maximum benefit if you do these exercises once or twice every day (or as prescribed). Try to find the best time to integrate them into your daily routine and set aside enough time so that you don’t feel rushed. Some people find that breaking their exercises up into a few short sessions throughout the day works better than doing them all at once. If you do this, complete all the repetitions for each stretch or exercise in the same session.

If something changes and your current exercise plan no longer works for you, ask your physical or occupational therapist to modify your plan.

How Caregivers Can Help

If you are a family caregiver or a paid caregiver, you can play an important role in helping the person living with ALS feel less pain and discomfort by assisting with stretching and range of motion exercises. Ideally, the physical or occupational therapist will show you how to perform or assist with each movement and stretch. You can also ask to film the professional demonstrating each exercise so you can refer back to it as needed.

​In general, you will want to support the weight of the involved body part, move it slowly through a gentle range of motion up to the point of resistance, and back off at any sign of pain or discomfort. Allow the person to actively participate as much as they would like.

Lower Body Stretching and Range of Motion Exercises

Preserving range of motion in the lower body is particularly important for mobility. Stretching tight calves and Achilles tendons and improving ankle flexibility may help improve walking and transferring and lessen foot drop.

​Common lower body exercises include the runner stretch, hamstring stretch, hip and knee flexion, and ankle flexion.

Upper Body Stretching and Range of Motion Exercises

Preserving range of motion in the upper body can help you continue to perform daily activities. Shoulder stiffness from lack of movement is common and can be very painful when doing things like dressing and transferring. Curled fingers and thumbs can prevent you from grasping and doing a variety of everyday tasks.

​Upper body range of motion exercises can improve flexibility and function in your neck, shoulders, elbows, wrists, hands, fingers, and thumbs.

As ALS progresses, you may notice that it is becoming harder to do everyday things around the home, like turning on lights, adjusting the thermostat, and answering the door. Recent advances in smart home technology have made it possible to continue to do many of these things on your own, regardless of your physical limitations.

What can smart home technology do for me?

Smart home technology can let you control electronic devices around your home by speaking, touching a screen, or using an alternative access method. With smart technology, you can:

• Turn lights on and off
• Adjust the thermostat
• Control your TV and entertainment devices
• Make and receive phone calls
• Answer and unlock your door
• Turn small appliances on and off
• Control specific outlets
• Operate your home security system
• Communicate between rooms via intercom
• And much more​

​​It is also possible to program “if this, then that” (IFTTT) scenarios. For example, whenever you unlock the front door, the hall lights can be programmed to automatically turn on.

Creating a Smart Home with Consumer Products

Smart home consumer products can be a great option for people living with ALS due to their affordability, flexibility, and ease of use. Today’s smart home devices operate through technology that many people already have: internet, Wi-Fi, and a smartphone or tablet.

​Digital assistants like Amazon’s Alexa can be used with smart speakers, smart displays, phones, tablets, and computers. Once you set up your digital assistant and platform, you can choose from a wide variety of smart devices like bulbs, plugs, thermostats, and doorbells. These devices should be “plug and play,” meaning that if you are comfortable pairing devices with Bluetooth, you should be able to follow instructions and connect the devices yourself.

If you can’t figure something out, you can try watching instructional videos online or ask a tech-savvy family member, friend, or neighbor to help you troubleshoot. You can also hire a smart home technician. Another benefit of going the consumer-products route is that you can start with just one or two devices and then add more as you feel more comfortable.

Choosing Your Digital Assistant Platform

You can control everything through a digital-assistant-powered platform that can be operated by voice and/or a customizable digital dashboard on your phone, tablet, computer, or smart display. 

The most commonly used digital-assistant platforms are:

• Amazon’s Alexa – Arguably the most user-friendly and widely-used option, Alexa is built into Amazon’s smart speakers like the Echo and Dot and smart displays like the Echo Show.
• Google Assistant – This virtual assistant works through the Google Home app on devices like the Google Nest Hub smart display and Google Nest Mini smart speaker. ​​ 
• Apple’s Siri – The Apple HomeKit app comes preinstalled on iPhones and iPads and operates through the HomePod mini smart speaker.​​ 

The Amazon and Google platforms are compatible with thousands of third-party smart home products. Currently, Apple’s system is more closed and less compatible with third-party products. In general, compatibility between all smart home platforms and devices has improved and should continue to get better. 

You can do online research, talk with smart home experts, and consult with your ALS occupational therapist, speech language pathologist, or assistive technology professional to determine which platform and smart speaker might be best for you. If you already have an Amazon, Google, or Apple device and feel comfortable with it, sticking with the platform you already know could make the most sense.

Choosing Your Smart Devices

Once you have chosen your Amazon, Google, or Apple platform, you can start researching and shopping for smart devices. Before purchasing a product, make sure that it is compatible with your platform. The packaging for each device will usually indicate which platforms are compatible. Many devices work across multiple platforms.

Here are some of the most common types of smart devices:

Smart bulbs are often the easiest entry point into smart home technology. You can buy a relatively inexpensive smart bulb, install it, download the app, and control your lighting—even without using a digital assistant and smart speaker. You can program your bulbs to turn on and off at certain times of the day, dim, etc.

Smart plugs are also simple and user-friendly. You can use them to turn devices on and off as long as the devices have mechanical switches and can be plugged into an outlet. You can use smart plugs for fans, electric blankets, suction machines, and other devices.

Smart video doorbells are popular for safety and convenience. If someone rings or knocks at your door, you can see who’s there and communicate with them over the intercom.

Smart locks are often used in conjunction with video doorbells. Once you see who is at the door, you can unlock the deadbolt. You can also assign virtual keys to specific people like family, friends, and caregivers so they can let themselves in.

Streaming media controllers can allow you to operate your television and switch between inputs like cable and streaming.

Smart video cameras can be used for both home security and personal safety. Should it be helpful, indoor cameras can allow caregivers to keep an eye on loved ones from another room or from outside the home.

​There are many more types of smart devices. You can research and purchase them on sites like Amazon and Best Buy or visit stores like Best Buy, Target, or your local hardware store.

Are there other smart home setup options?

There are two other ways you could set up your smart home. Instead of purchasing consumer products and running them through a digital assistant like Alexa, you could either set up a hub or hire a company to install a custom system for your home.

Digital hubs centralize and coordinate all of your smart devices, whether they use Wi-Fi, Bluetooth, Z-Wave, or another wireless technology. This can be a good option if you are tech-savvy, motivated, and would like more sophisticated functionality than digital assistants like Alexa can provide. But setting up and using a hub can be a frustrating experience unless you have the technical expertise yourself or hire a smart home technician to help you with setup and troubleshooting. ​

The other option is hiring one company to come to your home to set up a closed custom system. Considered the gold standard, Environmental Control Units (ECUs) or Electronic Aids to Daily Living (EADLs) can provide the most sophisticated functionality, but they are also the most expensive option. The system itself is designed, engineered, manufactured, and installed by trained professionals. It is customizable and can control your entire home.​

The company will provide technical support and keep up with changes in technology. However, because it is a closed system, outside technicians may not be able to help you troubleshoot, and your system may not integrate with popular consumer-grade smart devices. ​

How much will everything cost?

​Home automation costs are not covered by Medicare, Medicaid, or private insurance. However, if you are a military veteran with service-connected benefits, the VA will likely cover all of your home automation costs—even the more expensive custom systems.

With differing individual needs and many different companies and devices, it is hard to estimate what a smart home setup will cost. Generally speaking—when factoring in devices, install, and support—custom systems will cost the most, hubs less, and consumer products the least.

Depending on the size of your home and the number of devices you want, purchasing consumer products for the most essential functions for part of your home could cost around $1,000. For more devices covering a larger area, it could be closer to $2,000.

​​If cost is a concern, you can ask ALS Northwest or your ALS clinic if they have a smart home program, devices in their equipment loan closet, or suggestions for financial support. Another option is asking ALS Northwest's Assistive Technology Program if you can try out short-term loaner devices and/or get technical support.

Selecting Your Best Access Method

No matter which system or digital assistant you have, you should be able to access your platform. The occupational therapist, speech language pathologist, or assistive technology professional from your ALS clinic or medical team should be able to help you determine which access method is best for you.

If you can still use the touchscreen on your phone or tablet, you can access the app directly. This is often referred to as the “direct select” method.

If you can speak but are unable to use a touchscreen, you can give voice commands directly to your digital assistant. Keep in mind that digital assistants may struggle to understand impaired speech.

If you are unable to use your hands or voice, alternative access methods include using a head mouse, wheelchair head array, or switches that can be operated by different parts of the body. If you are in a power wheelchair, you can use the joystick to operate the app on your phone or tablet.

If you have a speech-generating device (SGD), you can use eye-tracking technology to speak your commands out loud to your voice-activated assistant and smart speaker. Ask your speech-language pathologist or SGD representative to help set up your digital assistant app and pre-program common commands.

You can also pre-program common commands into your phone or tablet so they can be spoken aloud to activate a virtual assistant like Alexa.

Doing something you love—whether an art, hobby, game, sport, or activity—can bring deep joy and fulfillment. As ALS progresses, the thought of not being able to do something you love can be extremely difficult. Depending on the activity, however, there may be assistive devices or modifications that let you continue to enjoy all or part of that activity or experience.

​If you notice it is becoming more difficult to do something you love, ask the occupational or physical therapist on your ALS clinic team or medical team if there are any adaptive strategies or devices that could help you continue to do that activity.

​You may be surprised to learn what is possible, either through a physical modification or digital alternative. No matter the stage of the disease, it is important to continue living and doing things you love, even if in a modified way.​

Exploring Adjustments and Modifications

There are many different types of adaptive devices that can help you continue to do activities in a modified way. You may also be able to modify the activity itself or find ways to enjoy core aspects of what you love about the activity.

​Every individual, activity, and situation is unique, so you may need to be creative, think outside the box, and go through a process of trial and error to figure out what works best for you at each stage of the disease.

There are too many pastimes to specifically address each one here, but below are examples of some common activities and potential modifications. Even if your interests are not listed, these examples may prompt you to think about how you might go about modifying your favorite activity.

PAINTING: If you love to paint, but are finding it harder to hold your brush, you can try building up the handle with foam tubing, tape, or anything else that makes it easier to grip. If that doesn’t work, you can try putting your brush in a universal cuff. If using a physical paintbrush is no longer possible, there are many apps and programs that can help you make art digitally. 

PHOTOGRAPHY: If you are finding it difficult to hold or operate your phone or camera, there are different mounting and control options that can allow you to continue to enjoy photography. If you have a wheelchair, you can mount your camera onto your chair, move about, and snap photos with your touchscreen, voice, eyes, or switches that can be activated by your head, hand, or foot. You can then use a program or app to edit your photos digitally. 

READING: If you are starting to have trouble holding a physical book, you can try devices like a book stand or clipboard or clip that can hold your book open. Alternatives to physical books include listening to audiobooks and reading electronic versions with an e-reader or tablet. You can also read or listen to digital versions of newspapers, magazines, and other media.

WRITING: If you write—whether for work, communication, or self-expression—there are ways to continue writing. For handwriting, you can try a slip-on grip, universal cuff, functional wrist brace, or ergonomic arm support. For typing, you can press keys with a slip-on typing aid or stylus that you can either hold in your hand or tuck into a universal cuff. If you are unable to use your hands, you can write using speech-to-text dictation, a head mouse, or eye-tracking technology.

GARDENING: If you like to grow flowers, herbs, or vegetables, there are different ways you can continue to enjoy gardening. Garden kneelers with handles, special adapted gardening tools, raised beds, and drip systems on timers can make gardening easier and more accessible. If you are unable to actively garden but love fresh flowers, tasty herbs and vegetables, and just being outdoors, you can always ask family, friends, and neighbors to help set up and maintain your garden. 

PLAYING GAMES: If you like to get together with others to play cards, for example, you can try using a card holder, asking for assistance when needed, or playing with a partner. There are also many digital versions of card games and other games that you can either play on your own or remotely with friends. You may even discover new online games that you can play with a wider gaming community. 

GOLFING: If you are finding it harder to play golf, there are adapted clubs as well as special gloves that can help improve your grip. If swinging your clubs becomes too challenging or exhausting, you could still ride in the cart and chip or putt as you approach the green. If you can no longer play but still enjoy getting out on the course with others, you may be able to modify the seat on the golf cart to ride along and socialize. 

FISHING: If you are finding it harder to cast and reel, there are automatic casters and reels that can help. If you are in a wheelchair, you can attach a rod holder to your chair. If you are unable to reach a boat or fishing spot, you may be able to build or set up a ramp to help you get there. You can also look for locations with easier access, such as a dock or a pier. If you are unable to fish but still enjoy being outdoors near water, you can still try to join others on outings.

PLAYING SPORTS: Some sports may be modified so that you can continue to actively participate, even from a wheelchair. More physically demanding sports may be harder to modify. To learn what is possible, ask your physical or occupational therapist and ALS Northwest for suggestions. Ask if there are any adaptive sports programs in your area. For ideas, you can also search online using terms like “adaptive tennis” or “adaptive skiing.”

GETTING OUTDOORS: If you like to spend time in nature, you can still find ways to get outdoors as long as you have the right mobility devices and access to transportation. Walking or riding along accessible trails or scenic sidewalks, or even just sitting in your backyard, can provide a nice change of scenery.

​If you love going to the beach, there are special manual beach wheelchairs with wide wheels that can roll across the sand without sinking. You may be able to find them at beach entry stations or lifeguard stations and headquarters. 

TRAVELING: Taking trips when living with ALS will be more challenging, but with planning, patience, support, and the right equipment, you can find ways to visit loved ones, return to your favorite places, and explore new destinations.

​You can rent accessible vans for road trips and fly on commercial airlines as long as you can sit in a standard airplane seat for the duration of the flight. Learn more on our Traveling with ALS page. 

If you find that you can no longer do a favorite activity, even with modifications, you can take the opportunity to try something new that you’ve been curious about but haven’t had the time to pursue. You might discover and develop new interests and pastimes.

Accessing Your Digital Devices

Recent advances in technology have made it possible to do many things—such as making art, playing games, attending virtual events, and controlling smart home devices—as long as you can access your phone, tablet, or computer.

​If you find that it is getting harder to access your phone, tablet, or computer, reach out to your occupational therapist and speech language pathologist to request an evaluation and ask for suggestions. There are many assistive devices that can address a wide range of needs.

If you are finding it hard to hold your phone or tablet, there are devices like tabletop phone stands, table clamp holders with arms, and wheelchair mounts that can hold your device for you.

If you like to use a stylus on your touchscreen but are finding it challenging, a simple finger sock or extended stylus may help. If you can type more easily on a full-size keyboard than on your phone or tablet, you can connect a wired or wireless keyboard to your device. And if you are starting to have trouble using a standard mouse, there are many mouse variations, including trackballs and joysticks.

If you can speak but are unable to use your hands, there are speech-to-text apps and programs that can allow you to click, write, surf the web, and control your device. Check and try the built-in accessibility features on your device before paying for an app or program like Dragon Pro. If you want to purchase an app or program, make sure it is compatible with your operating system first. Getting an external microphone may improve your program’s ability to understand your speech.

Another option is using hands-free voice assistants, like Siri for Apple products and Google Assistant for Android devices. Getting a voice-activated smart speaker will allow you to do even more with these digital assistants.

If you are unable to speak or use your hands, there are additional access methods such as the head mouse, which allows you to direct your mouse across the screen by moving your head. You can also use eye-tracking technology, either with a speech-generating device or by connecting a special camera to your tablet or computer.

Learning new ways to access your devices can be a slow and frustrating process, but with practice it should get faster and easier. Continuing to practice will allow you to stay connected with others and do more on your own.

Do you need assistance with digital access and devices?

Most digital access devices, except for speech-generating devices, are not covered by insurance. If you need assistance accessing your phone, tablet, or computer, there are a number of resources that should be able to help.

Begin by sharing your challenges and needs with an occupational therapist or assistive technology professional (ATP). They should be able to do an evaluation and make suggestions. If you have a speech-generating device, a technology professional from the manufacturer should be able to help with training and troubleshooting.

The nonprofit organization Bridging Voice offers a range of personalized services that can help you with computer access and communication technology needs. At no cost, a speech language pathologist can conduct a remote evaluation to determine the technology that would best address your needs. Bridging Voice can educate you on low-cost options, guide you in obtaining the technology, help you set it up, and then provide ongoing support, training, and customization.

​The ALS nonprofit organization Team Gleason may be able to recommend or provide some loaner communication devices. Learn more about what Team Gleason offers on their PALS Resource and Communication Devices pages.

Another option is asking ALS Northwest if they might be able to lend you some devices from their equipment loan closet.