Daily Living
Take to the Skies
Every day, millions of people board flights bound for destinations across the United States and around the globe. Unfortunately, navigating sprawling airports and negotiating cramped planes makes traveling by air an uncomfortable experience for most passengers, and it can prove to be downright daunting for those with mobility challenges and other disabilities.
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Adaptive Is the New Black
This fall, New York Fashion Week opened with a bang: A runway show called Fashion Revolution presented numerous types of adaptive clothing worn by 30 models with disabilities. Organized by the Runway of Dreams Foundation — a nonprofit created by Mindy Scheier, whose son, Oliver, has a rare type of muscular dystrophy — the show highlighted the foundation’s goals of dispelling common fashion industry misconceptions about people with disabilities.
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Music Makes It Better
Whether it’s through headphones, blasting out of the van speakers or playing live right in front of me, music has been my constant source of happiness. After years of misdiagnoses, I was recently diagnosed with a form of congenital muscular dystrophy called collagen VI (with a bunch of letters and numbers after it that make me sound like a robot). Through the ups and downs of medical woes and lifestyle changes — from walking to using a wheelchair — the one thing that has consistently put a smile on my face is music in any way, shape or form.
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Learning to Love Your Wheels
Matt Curcio is a 27-year-old disability rights advocate who is living with a form of congenital myopathy. He regularly speaks and writes to increase awareness of the disability community’s needs and encourage individuals with disabilities to seek the support they need to pursue their dreams.Yet, even as he advocates for others, he has experienced his own struggles with asking for assistance. “Even at a young age, I’ve considered certain types of help as enablement for myself,” he says. As his disease progressed, he resisted using a mobility device for as long as possible. While Curcio can still walk short distances, he now relies on a mobility scooter outside his apartment. Transitioning to the scooter was a 12-year process.
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Get Ready to Roll
For many people with neuromuscular disease, there comes a point when walking becomes too difficult, and it’s time to start thinking about power mobility aids. This typically boils down to choosing between a mobility scooter and a power wheelchair.Given the progressive nature of neuromuscular disease — not to mention the financial investment involved with purchasing a power mobility aid — it’s important not only to select something that will meet your functional needs now and in the future but also to advocate for features that will provide you with the best long-term quality of life.
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A Room of His Own
When Robbie Ivey, a 19-year-old soon-to-be college student from Iron River, Mich., and his mother, Carrie, first met Bill and Deb Weis, they had an idea but they didn’t know how to make it happen. They explained to the couple that they were looking for a way for Robbie to live more independently with Duchenne muscular dystrophy (DMD) by operating powered objects in his room, like the lights, TV and bed.
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Aging (Sort of) Gracefully with SMA
Recently, when a new homecare nurse arrived for training, Dad looked out the window and said, “She’s a young one.”“Well, Dad,” I replied, “We’re at the point where everybody’s young.” Despite my sarcasm, there was more than a little truth in this statement.Once I turned 45, evening nurses started putting me to bed at 11 p.m., after I had spent decades writing until the wee hours of the morning with the lights turned down and music blasting in my headphones, and then reading a few chapters of a book before turning in. I rebelled at the curfew, and I managed to sneak in the occasional all-nighter, but the next day I’d be running on fumes. This was my first indication that I’m not a young man anymore.
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Voice Banking Offers the Promise of a Natural Voice
A strong voice was the foundation of Penny Abreo’s job as a first-grade reading teacher in Houma, La. But when she heard her words slurring and experienced unexplained fatigue and hand cramps, she and her husband, Aaron, sought medical advice.At 41, Penny learned she had ALS. Also known as Lou Gehrig’s disease or motor neuron disease, ALS affects nerve cells in the brain and spinal cord that control voluntary muscle movement such as speaking, walking and other life functions. As the cells stop working, so do the muscles used to do such activities.
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The Great Accessible Outdoors
Jessica Albanese, 20, is passionate about the outdoors. The Delaware native, who lives with limb-girdle muscular dystrophy (LGMD), has navigated several of our country’s natural wonders in her power wheelchair.“Traveling is a passion of mine,” Albanese says. “I’ve hiked in the Great Smoky Mountains, I’ve seen the wild ponies at Assateague Island, and I’ve visited the alligators at Everglades National Park.”
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Startup Support
Once I was diagnosed with myotonic muscular dystrophy (DM), I sought a support group to learn more about my disease and meet others with the same diagnosis. Shortly after I began attending, the facilitator left the group and I was asked to take over her responsibilities. Talk about trial by fire.
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