Mobility and ALS
Getting the right mobility device at the right time can help you stay safe, save energy, and be more independent.
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.
Gait Belts and Transfer Belts
If you feel unsteady when using walking aids and/or need assistance with transfers, a gait belt or transfer belt can help your caregiver lift you and support you while walking.
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.
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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.
Insurance Note
It is important to understand that Medicare will only consider paying for one power mobility device every five years, so it is important that you use your benefit on a custom power wheelchair that will meet your ongoing needs, instead of using it on a standard power wheelchair that lacks more advanced features. For an ALS diagnosis, Medicare will not cover scooters or portable power wheelchairs. Currently, no insurance covers portable power wheelchairs.
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 local ALS Network Care Manager if you can borrow devices from their equipment loan program at no cost.
Home Safety and Accessibility
For additional information about safety, accessibility, and mobility in and around the home, visit our Home Safety and Home Accessibility pages in this guide.
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