Daily Living

Embrace Your Body

When MDA National Ambassador Keisha Greaves was diagnosed with limb-girdle muscular dystrophy (LGMD) as a college student at Framingham State University, in Massachusetts, her lifelong confidence in her body plummeted.Studying fashion design and merchandising made the situation especially tough. She was used to looking a certain way and following fashion trends that certainly didn't celebrate different kinds of bodies. At first, she didn't want to share what was happening — for example, she told people she was walking with a cane because of a sprained ankle. It wasn't until nearly four years after her diagnosis that she decided to acknowledge her condition publicly.

Mental Health Is for Everyone

How are you? We're asked this question frequently, and we often respond, "Fine." But the truth is, many times we're not fine. Life is complicated. And for people living with a neuromuscular disease or caring for a loved one who is, there are a multitude of challenges to navigate.Having a lot to deal with, feeling alone, and coping with medical trauma and loss are among the many life experiences that can affect mental health. It's important to know that no matter what you're feeling, you don't have to go through it alone.

Claiming My Courage

There are few specific dates that stick in my memory. Sept. 21, 2016, is one of them. On that day, a phone call changed my family's lives forever. After two long years of visits with specialists and countless tests, there was finally a diagnosis for my 4-year-old son: centronuclear myopathy. In addition, his diagnosis was my diagnosis; he had inherited the mutation from me.

Making Peace

A common but rarely spoken truth within the neuromuscular disease community is that it is a continuous battle to deal with the emotional repercussions of watching the mobility you have dwindling, before your very eyes, as your disease progresses along its fated course.For the first 15 years of my life, my strength was consistent. But my doctors had always warned me that spinal muscular atrophy (SMA) would dictate how my muscles deteriorated and that it would occur in stages. Once the deterioration began, it would enact a progressive downhill slope.

Keeping a Sense of Humor

Many years ago, I helped my grandmother, then in her 90s, downsize from her apartment to a single room in an assisted-living wing. Surveying the brimming room, I tried to say something encouraging: "Grandmom, it's like you're going back to college." Her response surprised me. "Actually," she said, "I like to think of it as finishing school." Dark humor indeed. I like to believe I've inherited her remarkable sense of humor (and verbal cleverness).

2021 Reader Photo Contest Winners

Congratulations to 2021 Lasting Impression Photo Contest winner Leslie Crowley Jr., 27, of Atlanta, Georgia.This photo shows Leslie, a former MDA Summer Camper who lives with Duchenne muscular dystrophy (DMD), in his natural element, with his music equipment behind him in his home studio. A lifelong music lover, Leslie produces music under the name J0K3 (find him on social media @jokemusic3).

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.

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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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