Back to News and Events

Caring for Someone With Spinal Muscular Atrophy

Learn five important ways caregivers can help their loved ones with SMA while also making time for their own wellness.

August is Spinal Muscular Atrophy Awareness Month. Spinal muscular atrophy (SMA) is a progressive, hereditary brain disease that damages and destroys nerve cells in the brain and spinal cord. Over time, SMA causes a person’s muscles to weaken, develop twitching movements, and atrophy, resulting in limited mobility.

Because there is no cure for SMA, caregiving and treatment mostly involves managing symptoms, which often requires daily around-the-clock care. Below, we offer tips for caring for someone with spinal muscular atrophy, including the importance of caregivers having their own support network.

Can spinal muscular atrophy be treated?

The most common form of SMA is classified into four types, which relate to the age of onset and severity of symptoms: Werdnig-Hoffmann disease, or SMA Type I; Dubowitz disease, or Type II; Kugelberg-Welander disease, or Type III; and Type IV. For all but Type IV, symptoms begin in childhood.

Spinal muscular atrophy treatment mainly involves medications and therapies to manage symptoms and prevent complications. Respiratory or breathing problems are the top cause of illness for people with SMA and the most common cause of death for children with Type I and II SMA.

A person’s required level of care varies depending on their ability to move their arms, legs, face muscles, and chest, as well as how SMA impacts their ability to speak, walk, breathe, and swallow. Caregivers and families with a child with SMA often have to help manage breathing, nutrition, movement, and daily activities.

Caregivers may also organize physical and occupational therapy sessions and assist with stretching and strengthening exercises. They may need to offer help with special ventilation equipment or assistive devices like wheelchairs and braces. These tasks are challenging and demanding, both physically and emotionally, and may require special preparation or training.

Familiarize Yourself With Assistive Technology and Equipment

Assistive technology and equipment can help people with SMA retain a level of autonomy and independence, and in some cases can help people stay mobile to slow the progression of muscle atrophy. When providing care for a person with SMA, you will likely need to learn how to use these types of assistive medical equipment. This may include manual or power wheelchairs, adaptive strollers, car beds (to allow someone to lie down while traveling), or standers for people who aren’t able to stand independently. 

Depending on a person’s individual needs, you may also have to help with a cough assist machine and a suction machine to clear their airway and remove cough secretions. Other medical equipment commonly needed to care for someone with SMA includes feeding tubes, pulse oximeters to monitor oxygen levels, and bilateral positive airway pressure (BiPAP) machines, which help inflate the lungs with air when a person inhales.

Create an Adaptive Home Environment

When caring for someone with SMA, you will need to know how to adapt your home environment to be more accessible. In addition to addressing some common safety concerns, an adaptive environment is empowering for people with SMA because it helps them maintain autonomy and independence. Certain modifications can help people with SMA feel more comfortable or provide a chance to practice therapeutic activities. 

Here are some ways to consider making your home more accessible:

  • Floor plan modifications like ramps, wide open spaces to move through, smooth flooring for wheelchair mobility, and longer faucets that make it easier to reach and use a sink
  • Adaptive seating, including adaptive toilet seats in the bathroom
  • Specific brands of everyday items that are easier to use, open, or move
  • Placing items within reach or bringing a surface into closer range, like using a lapdesk in place of a table or a basin instead of a sink

Learn About Your Care Team

A person with SMA often receives a range of treatments and therapies, which means they work with multiple specialists, therapists, and other caregivers. It’s important to understand the specific role each specialist and care provider plays in their treatment plan. The care team will include a lead doctor—typically a neurologist or neuromuscular specialist—who is an SMA expert and acts as a point person for other providers. 

Depending on their individual needs, someone with SMA may also have a pulmonologist who helps with breathing issues, a gastroenterologist for feeding-related difficulties, an orthopedist for help with postural issues like scoliosis, and physical, occupational, and speech therapists. A nutritionist or registered dietician can provide diet recommendations to promote healthy weight gain and protect bone health.

As a caregiver supporting a person with SMA, you are an important member of this care team. Maintain open communication with each provider and know who to reach out to when you need to discuss particular symptoms, treatment options, and ways to prevent complications. You may also need to schedule appointments and coordinate transportation or arrange for in-home care.

Stay Updated on Current Research and Treatment Options

Research on SMA is ongoing. Your child or loved one’s care team will have access to new discoveries and breakthrough studies, but as a caregiver you can also stay updated on current research and treatments. This knowledge better enables you to ask informed questions, discuss new options with your care team, and act as an advocate.

For example, Jerry Mendell, MD, FAAN, 2019 recipient of the American Brain Foundation’s Scientific Breakthrough Award, led research that uncovered a one-time treatment for children with Type I SMA. This gene replacement therapy stops the progression of the disease, so administering it as soon as possible is crucial.

Find Ways to Prioritize Your Own Wellness and Support

Caring for someone with SMA requires a huge investment of time and effort. That’s why it’s essential for caregivers to have a strong support network of their own and ways of maintaining their own mental health and well-being.

If you’ve transitioned into a caregiver role, know that you are not alone. Friends, family, in-home caregiving staff, and specialists on the care team are all a part of your network. In order to have the energy to help others, you need to take time for yourself to recharge and focus on self-care. Recognize your personal strengths, and don’t be afraid to ask for help or delegate responsibilities to others.

If you’re looking for ways to support caregivers in your life, reach out and let them know the specific ways you are able to help. Whether you can step in to provide basic care or you’re able to fill out paperwork or schedule appointments, giving a primary caregiver a break to take time for themselves can be a huge help. You can even just offer to take a basic task off their plate like cleaning, cooking, or running errands. This kind of support for caregivers can make a huge impact.

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we won’t have to imagine a world without brain disease, we’ll be able to live in one.