Daily Living

Addressing Vaccine Concerns

To avoid getting seriously sick from COVID-19, healthcare providers and public health experts recommend that everybody who is eligible receive the COVID-19 vaccine.Vaccines have been protecting Americans from dangerous contagious diseases for decades. Thanks to vaccines, polio and mumps are rare today, and smallpox has been eliminated. (To learn more about vaccine history and safety, read " Are Vaccines Safe?")

Creating Awareness

Navigating the impacts of a neuromuscular disease can be challenging enough, but added on top of that is the responsibility to educate others — talking to people at work, school, and in the community about disability awareness. Although having to address this issue again and again can be exhausting, the effort is crucial, believes Stephanie Bowers-Legg, who lives with myasthenia gravis (MG).

Living Creatively

In my childhood I was a creative kid with an active imagination. I loved to play pretend with my friends. I attended art clubs and sang in the school choir. I daydreamed and made up stories in my head.But as my imagination grew, my body deteriorated. I was diagnosed with Becker muscular dystrophy (BMD) at age 10. As I grew older, my muscles became progressively weaker. I couldn’t run in gym class. I fell in the hallways at school and came home with cuts and bruises. After a particularly bad fall in which I busted my chin on the floor, my high school advised my parents to get me a wheelchair for my safety.

Advocating Against Ableism

When 19-year-old Jessica Hetzel was younger, she often felt unsettled by how others approached disability. Living with spinal muscular atrophy (SMA), she was aware of how people with disabilities were often segregated at school — put into special education rooms unnecessarily, for example — or spoken to as if they were tragic children or "in on the joke" about their conditions.

MDA Q&A: Top of Mind

You don’t have to navigate your neuromuscular disease journey alone. The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ top questions. Q: I have oculopharyngeal muscular dystrophy (OPMD). Is COVID-19 vaccination safe for people with neuromuscular disease? Are there any side effects?

Find the Right Resources

Amy Curran, 38, lives in Philadelphia with GNE myopathy, as do her three older siblings. Considering the high cost of accessible vehicles, this close-knit family decided to pool their resources and buy one wheelchair-accessible van. They use an online calendar to keep track of who’s using the van when. The van fits two power wheelchairs, so they often take turns going on outings in pairs.

Parent Pressure

Since her son Jackson's diagnosis at 3 months old, Marcie Epstein has always maintained a grounded perspective on his neuromuscular disease. Jackson, now 12, first showed signs of central core disease (CCD) at 5 weeks. "This is how Jackson was born," Marcie says. "This is his life."

Plan for a Bright Future

Josie Badger, DHCE, CRC, has used everything that life has handed her, including her disability, to pursue her dreams. Diagnosed with congenital myasthenic syndrome (CMS) at age 11, Josie now relies on a ventilator, power wheelchair, and 24-hour care. While many would see such challenges as a roadblock to pursuing an occupation, she has used them to fuel a career she is passionate about: advocating for disability rights.

Affordable Accessibility at Home or On the Go

Whether converting a van for wheelchair access, modifying a shower, or widening doorways, maximizing accessibility is at the top of the to-do list for many individuals and families living with neuromuscular disease. However, the cost and the difficulty of planning these changes keep many people from checking those items off their list.

Disability… or Superpower?

When I Google the definition of the word “disability,” this is what is returned: a physical or mental condition that limits a person’s movements, senses, or activities. Period. End of story. That’s all they have to say about that.But I have my own definition of disability. I define it as an opportunity to learn or heighten skills like positivity, determination, problem-solving, and about a billion others. It is a differentiator. (Who wants to be like everyone else, anyway?) It is an opportunity to do hard things and show the world the ease with which you can pull them off. It is an opportunity to laugh at the surprising and ridiculous things that occur daily. And it is a tool you can employ — just by existing and being who you are — to impact people around you with lessons on compassion, kindness, and open-mindedness.

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MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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