If a child or adult you love has spinal muscular atrophy (SMA), getting a wheelchair can help give them back some control. Wheelchairs can symbolize freedom and the ability to leave home. Using one may allow participation in favorite daily activities or, for some people, even adapted sports.

Using a wheelchair can open up new opportunities for people living with SMA. Gaining mobility can make it easier to travel, though you need to take precautions so that the chair is cared for well. Ideally, you’ll find one that’s both comfortable and covered by insurance. It’s also important to use wheelchairs carefully and keep safety top of mind.

Given the many types of wheelchairs, some of the following tips may not apply to you and your situation. In general, though, these steps may help ensure safety while using a wheelchair.

1. Assess Wheels, Brakes, and More

Schedule a regular time to look over and test the wheels, brakes, spokes, back of the wheelchair, backrest, seat cushion, seat belt (if you have one), and other parts of the chair. This should be done on both manual and motorized chairs.

Schedule regular time to look over and test the wheels, brakes, spokes, back of the wheelchair, backrest, seat cushion, seat belt (if you have one), and other parts of the wheelchair.

The wheelchair brakes should not only work but also work well. You need to be able to stop the chair efficiently and effectively every time, and the “parking brake” must keep the chair in place no matter what. If the chair moves at all while the brakes are on, it’s time for maintenance to keep everyone safe.

Wheels can sustain damage over time and become loose, lose tread, or stop rolling smoothly. If you note any of these problems, lubricate the wheels or get them fixed so you don’t risk difficulty or injury while using the chair. This kind of regular maintenance can keep a chair in great shape for years.

Other parts of the chair can rip, bend, break, or simply become flat and uncomfortable. Regularly assessing the chair’s condition helps the person you’re caring for stay healthy, avoid pain and pressure sores, and have a good sense of well-being.

2. Prioritize Comfort and Safety During Transfers

Transferring someone from a wheelchair to another location can be one of the most difficult physical aspects of caregiving, particularly if you’re moving someone larger than you are. However, transfers are essential to the person’s physical and mental health.

For instance, your presence might ease some difficulties with health care appointments. One mySMAteam member said, “I put in like a month ago for approval of extra hours for my attendant to go with me to the appointment in case I needed to be transferred out of my wheelchair.”

Before you move someone, make sure you know how the wheelchair works and have received training in moving a person, particularly if you don’t feel confident doing it.

In general, move any foot and leg rests so they won’t interfere, and then make sure the chair’s brakes are on. Support the person you’re moving, including their head, throughout the transfer.

Some wheelchairs may help you lift someone. One person on mySMAteam recommended, “Make sure you get a wheelchair that lifts you up almost to standing. That’s the only way I can do it.” If this is the case, learn how to get the most out of these features.

3. Use the Footrests

Any footrests or leg supports should be used every time. Otherwise, you could accidentally drag the person’s leg or foot, causing injury. Any dragging will also make it harder for you to push the wheelchair, and you could end up hurting yourself or becoming exhausted.

If you’re using a motorized chair, test the battery regularly. Confirming that the battery works well ensures you don’t get stuck somewhere with the chair.

4. Test the Battery Regularly

If you’re using a motorized chair, test the battery regularly. You can set up a schedule with reminders to yourself so that this doesn’t get missed. Some chairs come with a built-in system or accessories to help test the battery, whereas others require specialized equipment.

Confirming that the battery works well ensures you don’t get stuck somewhere with the chair. Regular testing also makes it more likely that you can get a repair or replacement when necessary before the chair becomes inoperational.

Obtaining new batteries can be difficult, especially when you’re relying on the manufacturer or insurance to cover the need. A member of mySMAteam shared their experience: “My wheelchair’s batteries are just about completely dead. I put in for new batteries like a month ago. They are sitting in storage somewhere.” Requesting parts like batteries ahead of time makes it more likely that the chair will be operational and ready whenever you need it.

5. Set the Brake When Still

The brake should be engaged whenever someone is staying in place in the wheelchair. Many motorized chairs do this automatically, but others require setting the brake manually, as with a manual wheelchair. Some models may have wheel locks instead of traditional brakes. Always engaging the brake means that the chair won’t get away from you or move on its own, which can be a safety hazard.

6. Understand the Repair Kit

Many wheelchairs come with repair kits to help you change a wheel or a tire, replace brake pads, and more, depending on the type of chair. Spending some time learning about the kit’s contents and how to use them will better equip you to repair the chair on the go.

“What I had not planned on was carrying a repair tool kit with me for an unexpected wheelchair repair,” one mySMAteam member said. Keeping the repair kit with you and knowing how to use it could save you a lot of hassle.

7. Practice Moving the Chair

A wheelchair can move in all sorts of ways, depending on the situation and terrain. Practice moving the chair when it’s empty to get the hang of it. Then, try using the chair with your loved one so they can give you feedback on your handling. This will help keep them comfortable and safe, no matter where the chair is used.

For a motorized wheelchair, allow the person to practice before taking them into a challenging situation. The more comfortable they are with their chair, the more they’ll be able to do with it, and the safer they’ll be.

8. Assess the Environment for a Wheelchair

Some situations, such as uneven surfaces, are more difficult when using a wheelchair than when simply walking or running. Be on the lookout for these and other challenges, including:

• Crowds
• Steep inclines or declines
• Narrow walkways
• Stairs
• Curbs

In addition, look for ramps, elevators, and other ways to move the chair more easily. Attune your senses so you see these situations before they surprise you.

9. Listen to the Wheelchair User

It’s important to have good communication with the person you care for. The wheelchair user should be able to share if they’re feeling uncomfortable in any way or notice that the chair is acting differently than usual. The better you communicate together, the safer you both will be.

If speech is difficult for your loved one, come up with a cue or an indicator so that they can alert you when something is wrong. That way, you can stop and assess even if they can’t describe the problem.

Check With a Health Care Provider

Ask your health care provider about the risks of pressure sores (mainly at the buttocks) or entrapment neuropathy. This condition occurs when a nerve, such as the elbow’s ulnar nerve at the chair’s armrest, gets compressed.

If your loved one is regularly uncomfortable, tell a health care professional as soon as possible. The doctor can give more advice on how to safely and properly use a wheelchair, as well as offer other tips to make sure your loved one has the best possible quality of life while living with SMA.

Talk With Others Who Understand

On mySMAteam, the social network for people with spinal muscular atrophy and their loved ones, more than 2,500 members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.

Do you or someone you care for use a wheelchair for spinal muscular atrophy? Share your experience in the comments below, or start a conversation by posting on your Activities page.