Connect with others who understand.

sign up log in
Resources
About mySMAteam

Connect with others who understand.

sign up log in
Resources
About mySMAteam

Living With SMA: Your Guide

Posted on September 23, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Anastasia Climan, RDN, CDN

Spinal muscular atrophy (SMA) presents unique challenges during each stage of life for people living with the condition. Learning to balance your self-care needs while juggling your relationships and responsibilities requires an ongoing effort, especially as an adult with SMA. Multiple strategies and tools can help you adapt and be successful as your calendar fills up with work, errands, family time, social engagements, and leisure activities. Here’s how others have learned to cope.

Developing Healthy Lifestyle Habits

Staying as healthy as possible should be a top priority for anyone. For people with SMA, healthy lifestyle habits are nonnegotiable. Taking care of your needs first will help everything else fall into place.

Focusing on Your Diet

There’s no ideal diet for SMA, but good nutrition is essential for keeping your energy levels up and promoting regular bowel movements. If you have difficulty eating, you may need to include more pureed or liquid foods in your diet. A speech pathologist can evaluate your swallowing ability and risk of aspiration (inhaling foods or liquids). A registered dietitian can help you find foods that you enjoy and tolerate well that meet your body’s nutritional needs.

Exercising

Exercise can reduce muscle weakness and improve your quality of life. Members of mySMAteam have described their experiences with exercise. One member shared, “Using the antigravity treadmill today in physical therapy. It allows me to walk and exercise without the fear of falling.”

Another member commented, “Since I started on Evrysdi I have started exercising. I feel like my stamina is getting better. There aren’t big changes, but a whole lot of little ones. I feel so lucky to have the opportunity for this new breakthrough.”

Exercise can be a positive outlet for the stress that often comes with having a chronic condition. Incorporate deep breathing, meditation, and light stretches into your exercise program to turn it into a relaxing and calming activity.

Quitting Smoking

Smoking cigarettes has negative health consequences for everyone. Smoking increases the risk of breathing problems and respiratory infections in people with musculoskeletal disorders like SMA. Plus, the effects of smoke on muscle mass and bone health make smoking especially dangerous for people with SMA.

If you currently smoke, try to stop. People tend to be more successful at quitting smoking when they have a plan. Explore your options for free telephonic coaching or texting support. Nicotine replacement products or medications to ease withdrawal symptoms can also help you successfully quit smoking.

Building a Health Care Team

Adults with SMA often report difficulty finding an experienced health care provider who is familiar with their condition. Since multiple body systems can be involved in adult SMA, you may need a network of specialists who can work together to coordinate care. For example, adults with SMA may need a neurologist, pulmonologist, respiratory therapist, dietitian, and more.

To build your health care team, start by asking for referrals from your doctor. You can also request information from the Muscular Dystrophy Association to find clinics in your area.

Read more about building your medical team.

Managing Relationships

SMA can affect your relationships with family members, friends, partners, and children.

Navigating Family Relationships

Family can be a wonderful source of support when you have SMA. However, not all family members are empathetic or understanding of what you’re going through. The progressive nature of SMA can put added pressure and stress on close relationships, too. Good communication is crucial when life gets difficult at home. Rather than letting family issues get the best of you and your loved ones, consider starting family counseling or encouraging your family members to join a support group for caregivers.

Parenting With SMA

Sometimes people aren’t diagnosed with SMA until after they’ve started a family. If this has happened to you, you may worry about passing on this genetic condition to your children or how your children will be affected by your diagnosis. A genetic counselor can help answer some of your questions and help you decide if you’d like to undergo genetic testing.

You may also wonder how a change in your physical function may affect your ability to parent. Thankfully, many resources are available to help parents with disabilities learn about their legal rights, manage daily tasks, and more.

If you’re comfortable sharing your diagnosis with your children’s school, school counselors may be able to suggest family resources and programs. Also, encourage your children to ask questions and express their feelings. This can help you maintain an open dialogue, and it will also let you know when your children need extra support.

Working With SMA

Some people with SMA choose traditional employment, while others start their own business or prefer flexible work arrangements. Familiarizing yourself with the Americans With Disabilities Act can help you understand your rights and know what to expect from your employer.

Talking With Co-Workers

As you enter new work environments, you’ll likely need to explain SMA to your co-workers and managers. Being proactive about explaining your disease to others can help to ensure that you receive assistance or accommodations. The Job Accommodation Network has helpful tips on how to disclose your disability at work.

Using Assistive Technology

You can use many of the tools you might have found helpful during school in the workplace as well. Your employer should work with you to make reasonable accommodations for your workday. That may include making adjustments to your workspace to fit your wheelchair or providing you a workspace that limits how much you need to move each day. Occupational therapy can be a valuable resource, too. An occupational therapist can help you find practical solutions to barriers that keep you from doing your best work.

Learning About Disability Benefits

If SMA prevents you from being able to work, you may be eligible for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). Once you’re on SSDI for two years, you could be eligible to sign up for Medicare. Your health care provider’s office can help you find an attorney or social worker who can explain your options.

Children with SMA can also be eligible for SSI and Medicaid.

Paying for Care

The cost of assistive devices and prescriptions can quickly become a hardship for people with chronic conditions like SMA. Pharmaceutical assistance programs through drug manufacturers or your state’s social services program may be able to help.

If you are an adult living with SMA or the parent of a child with SMA, you may be able to find health insurance coverage for your or your child’s health care needs. Public and private health insurance options include:

If a child with SMA is eligible for Medicaid, Medicaid benefits will help cover the cost of care.

Organizations like Cure SMA or the Muscular Dystrophy Association can offer guidance for both navigating insurance and affording medications, assistive devices, therapy, and home care.

Traveling With SMA

You don’t have to give up traveling if you live with SMA. Research or call ahead before you travel so you can know what to expect and ensure that you get the services you need. If you’re traveling by plane with a ventilator or power chair, the airline may request specific information or need you to fill out forms before your trip. Taking care of as much as possible in advance will prevent setbacks and ease stress on your travel day.

Members of mySMAteam share their traveling adventures. One member said, “Florida is fun! We usually go to Key West. Our last cruise was out of Barcelona, Spain. It was a trip of a lifetime! So much fun! But, we found out that not all of the ports are handicap accessible, which was a big disappointment! I wish I would have done my research on that one.”

Another member responded, “Yes! Key West is a blast! Even though I can walk, walking on sand is a major undertaking, so I am thinking about renting an electric beach wheelchair so that I can ‘walk’ the beach.”

Finding a Community

On mySMAteam, the social network for people with SMA and their loved ones, more than 1,100 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.

Do you have questions or tips about living with SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

Related articles

The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month. In...

UCSF Health and mySMAteam Partnership: SMA Awareness Month 2022

The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month. In...
Medical treatments have dramatically changed the prognosis (outlook) for people living with...

Spinal Muscular Atrophy Life Expectancy: What’s Known and What’s Unknown?

Medical treatments have dramatically changed the prognosis (outlook) for people living with...
Spinal muscular atrophy (SMA) is a rare genetic condition that causes a decline in muscle...

Living With Adult Onset SMA: Diagnosis, Treatment, and Outlook

Spinal muscular atrophy (SMA) is a rare genetic condition that causes a decline in muscle...
Spinal muscular atrophy (SMA) presents daily challenges to those living with the condition. The...

Assistive Equipment for Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) presents daily challenges to those living with the condition. The...
What you eat can have a tremendous impact on your health. Proper diet and nutrition are not only...

Fatty Acids, Nutrition, and SMA: Can Changes in Diet Help?

What you eat can have a tremendous impact on your health. Proper diet and nutrition are not only...
Many teenagers and adults who have been diagnosed with spinal muscular atrophy (SMA) find it...

Adaptive Equipment for Driving With SMA

Many teenagers and adults who have been diagnosed with spinal muscular atrophy (SMA) find it...

Recent articles

About one-third of people with spinal muscular atrophy (SMA) are adults.Adults with SMA may have...

Treatment Options for Adults with SMA

About one-third of people with spinal muscular atrophy (SMA) are adults.Adults with SMA may have...
Clinical trials may test new drugs or new dosages or combinations of drugs for spinal muscular...

5 Reasons To Consider Participating in SMA Clinical Trials

Clinical trials may test new drugs or new dosages or combinations of drugs for spinal muscular...
Clinical trials for spinal muscular atrophy (SMA) test new treatments, new dosages of existing...

How Do Clinical Trials Work for SMA?

Clinical trials for spinal muscular atrophy (SMA) test new treatments, new dosages of existing...
Clinical trials are designed with safety as a primary concern.Before a new drug, new dosage, or...

Are Clinical Trials Safe for People With SMA?

Clinical trials are designed with safety as a primary concern.Before a new drug, new dosage, or...
Costs for spinal muscular atrophy (SMA) medications are high, but financial assistance programs...

Tips for Staying on Spinal Muscular Atrophy (SMA) Therapies

Costs for spinal muscular atrophy (SMA) medications are high, but financial assistance programs...
The Centers for Disease Control and Prevention (CDC) has approved a second COVID-19 booster shot...

What People With SMA Should Know About Getting a Second COVID-19 Booster Shot

The Centers for Disease Control and Prevention (CDC) has approved a second COVID-19 booster shot...
mySMAteam My spinal muscular atrophy Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close