Daily Living

The Smart Home’s New Story

You've probably heard of the "smart home." For close to two decades, it has been a regularly covered topic across all sectors of media. Each year, a story in a magazine, on prime-time news, or in an industry outlook report shows a futuristic take on a home that is automated to the point that it appears to read its occupant's mind. But what began as "the home of tomorrow" has become increasingly practical as new products and technology are rolled out on the market.

Service With a Smile and a Wag

At Payton Rule's high school in Missouri, the school year always ended with field day — a break from academics where kids demonstrated school spirit and played fun games on the athletic field located down a steep hill. Payton, who has Charcot-Marie-Tooth disease (CMT) and uses leg braces, missed the celebration during her first years at the school, because she could not safely maneuver the hill and the field on her own.

Profiles in STEM

Although students with disabilities indicate interest and intent to pursue science, technology, engineering, and math (STEM) careers at the same rates as students without disabilities, they do not receive an undergraduate degree or pursue STEM graduate studies at the same rates. This fact was reported by the National Institutes of Health (NIH) in 2021. They also cited several barriers, for people with disabilities, including lack of recruitment and engagement and an absence of mentors and role models.

One Day at a Time

On my 28th birthday, I recognized that something was wrong. I used to be able to jump and touch the rim of a basketball hoop. But on this day, I was missing by a foot.I remembered learning in a high school science class that a sudden loss of athleticism was a sign of a neuromuscular problem, but I didn’t want a medical diagnosis altering my plans. So, I decided to shut it out of my mind until it became a real concern.

Dynamic Duo

Some of the best ideas — and friendships — are born from moments of necessity. When 13-year-old Jackson Saville, who lives with spinal muscular atrophy (SMA), heard his mother's plan to keep him busy with educational activities last summer, he sprang into action."I had a better idea than the fun worksheets, which aren't very fun at all," says Jackson, who lives in Virginia Beach, Va. "I wanted to start my very own business."

Positive Relationships

Trust. Honesty. Mutual respect. Affection. The key elements of a healthy romantic relationship are the same for all couples. When one or both partners have a disability, it can affect how they each approach daily tasks, but it doesn't change the need for constant give-and-take. For adults living with neuromuscular disease, building and nurturing positive intimate relationships may even be especially important, because there are unique dynamics due to physical limitations or the progressive nature of the disease. Fortunately, couples can rely on tried-and-true strategies for forming healthy relationships.

Working Together

Anyone who lives with a neuromuscular disease that affects mobility knows that it often takes a village of caregivers to get through a week, let alone a day. For many people, personal care attendants (PCAs) provide a large part of that caregiving. PCAs are professionals who provide home care to people with disabilities who need assistance with daily living activities. This can range from helping them get ready for the day to helping them take medication to performing chores and errands.

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).

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.

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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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