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Spinal muscular atrophy (SMA) presents daily challenges, including difficulty sitting, standing or walking, eating, cooking, and even communicating. For some people, progressive muscle weakness makes these everyday tasks impossible.
Adaptive equipment can help make these daily activities easier. Your healthcare team — which may include physical and occupational therapists — will help you or your family member find the equipment best suited to your needs and learn how to use it correctly.
Adaptive strollers are designed to help families with children who have SMA. These strollers can include hooks, bars, or trays that can hold or stabilize medical equipment. They also have systems, such as safety belts and foam padding, to help keep the child in a safe and comfortable position.
Adaptive strollers can be lighter and easier to transport than a wheelchair. However, as a child with SMA ages, they may be able to self-propel a manual or electric wheelchair. Letting them do so can be good for self-esteem and help them gain a level of independence.
A car bed can help infants and children who have trouble breathing and can’t tolerate a traditional car seat. Car beds make long trips more comfortable and safe for children with SMA who need them.
Soft foam seats and back supports are simple options to use at mealtimes. They’re a good alternative to wheelchairs or standers for people of any age.
There are many products available to help people of all ages with bathing. A simple but stable chair with arm support can make self-transferring easier, while reclining chairs made of mesh material can go in the bath. Complete support systems can include safety straps, foam padding, and wheels or casters for transport.
Orthopedic braces are commonly designed for individuals to match their unique body type and needs. You’ll need a prescription to get your insurance to cover the cost. Orthotists (orthotic specialists) will create a custom bracing system.
Ankle-foot orthoses and knee-ankle-foot orthoses are often rigid plastic or carbon fiber frames that cradle the feet and legs, secured with a system of velcro straps. These braces support weakened ankles and knees, preventing injuries such as twists and sprains. These devices can also help correct the alignment of limbs with contracted muscles.
Many people experiencing SMA also develop scoliosis — a curvature of the spine that can cause pain and difficulty breathing. In these cases, a thoraco-lumbo-sacral orthosis (TLSO) may be helpful. A TLSO is a back brace that wraps around the ribs and abdomen, supporting a back with weakened muscles. For some people, these devices are crucial to support breathing.
It’s important to maintain the physical abilities each person has for as long as possible. Sometimes, our instinct is to help someone by removing or completing tasks or making them easier. However, in many cases, it’s much better to support and enable people to carry out daily tasks on their own. This is also true for those living with SMA.
Maintaining strength and mobility is another reason to encourage people to use mobility devices to propel themselves as long as they’re able, instead of transporting or transferring them. If a person can walk, sometimes a walker is all the support they need. A walker can help relieve some of the burden from the hips or knees, enabling people to use upper-body strength for support and stability.
Homes should be adapted to the use of mobility devices for safety and increased independence. Paths should be free of clutter and cords, hard surfaces should be chosen over carpet when possible, and the rubber tips or wheels of devices should be kept clean and intact to prevent slipping.
For those with upper body strength and mobility, a manual wheelchair can be the best choice. The user can propel a manual wheelchair with their arms and hands or be pushed by someone else. Propelling a manual wheelchair can offer much-needed exercise to keep the muscles moving.
Some people can be completely independent with the use of a manual wheelchair — they can transfer themselves in and out, put it into a vehicle, and drive themselves.
Electric wheelchairs, or power wheelchairs, are a great choice for those who can work the controllers but don’t have the arm strength for a manual wheelchair. These controls usually include a joystick that controls forward and backward movement and turning. Some controls can adjust speed, elevate or lower the chair, or recline the chair. Electric wheelchairs can give people with SMA more independence to maintain their quality of life.
An adaptive bike can be a great way to exercise and participate in activities. These machines come in styles suited to all ages. They’re good options for people with some leg strength but limited endurance or balance. Some are pedaled by hand. Others are tandem (so another person helps peddle) or have electric motors.
Many stander devices are available to help people achieve and maintain a standing position. Standing is good for digestion, circulation, and breathing, and it prevents pressure injury. It also allows people to participate more naturally in activities with peers, which can be essential for self-esteem and learning.
These devices come in a variety of forms, adapted for those who cannot stand independently, for those who can stand with some support, and for those who just need some assistance with rising. Some electric wheelchairs even feature integrated standing technology, which allows the user to propel themselves into the kitchen, for example, and then rise to standing in order to reach an item on a shelf or to use the counter for food preparation.
People with SMA sometimes have trouble with speech because of weakened or dysfunctional throat, tongue, or breathing muscles. Speech may not be loud and clear. People with SMA can also become tired quickly from talking.
Augmented and assistive communication devices (ACC) can help. AAC includes software that can enable people with limited dexterity to form written sentences and even translate these sentences into words that others can hear.
SMA can weaken all muscles over time, including those used for breathing. Therefore, some people with SMA need breathing support from a bilevel positive airway pressure (BiPAP) or continuous positive airway pressure (CPAP) machine. These are technologies that work through a mask that’s worn on the face.
Other times, people with SMA need surgery to help them breathe. A tube can be inserted via a small incision in the throat at the trachea (tracheostomy).
Some people living with SMA may develop dysphagia (difficulties with swallowing). This symptom can put people at risk for choking, and it can also limit nutrition and growth.
Sometimes, dysphagia can be managed by choosing soft or pureed foods. Other times, feeding tubes are necessary to make sure someone is getting the nutrition they need.
A tube delivering nutrition directly into the stomach or small intestine can be inserted through the nose and throat, or through a small incision in the abdomen. Liquid nutrition can then be delivered by hanging a small bag nearby, which looks similar to intravenous medication. A large plastic syringe can be used to deliver a meal more quickly. Your healthcare provider can teach you and your child how to manage and care for a feeding tube.
Insurance coverage for this kind of medical equipment varies by which country and state you live in, your insurance carrier, and the details of your policy. Your healthcare team can help guide you to options that your insurance covers, and they can help you submit appeals to denials, if necessary. Families can also reach out to local and national support agencies that may be able to help with funding or even the loan of a device. These include:
On mySMAteam, the social network for people with spinal muscular atrophy, members and caregivers come together to ask questions, give advice, and share their stories with others who understand life with SMA.
What’s your experience with occupational therapy or assistive equipment for SMA? What have you found that works for you? Share in the comments below, or start a conversation by posting on your Activities page.
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I Can Walk And Stand With Help. Regatta Assistive Devices For Walking Are Suggested?
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