Resources
Coping Through a Crisis
(Editor’s note: In the print edition of Quest Issue 1, 2020, Sarah Clark-Stoney, MSW, LSW, was misquoted. Her quotes have been clarified here, and updated in the full, downloadable PDF version of Issue 1, 2020.) Fifteen years ago, my family lived through Hurricane Katrina in Louisiana. At the time, our son was a freshman in high school. Falling pine trees and rain destroyed half of our home. Rebuilding took seven months, and we lived in the chaos during the process.
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7 Ways to Make Life at Home Easier
Now, more than ever, we’re spending a lot of time at home. While the continuing threat of the novel coronavirus makes this the safest place to be, home is also a place where frustrations can multiply when trying to accomplish everyday tasks.We chatted with experts and people living with neuromuscular diseases to get tips on how to ease some common struggles so you can truly feel the comforts of home.
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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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In Case of Emergency
Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation.
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Accessible Living: Lease on Life
A few years ago, Michele Boardman was ready to move into her first apartment. But Boardman, 30, who lives with limb-girdle muscular dystrophy (LGMD), had several factors to consider besides rent and location. She had to find a place that would accommodate the modifications she needed: a front door with a number-pad lock, doors removed from her bedroom and bathroom for easy wheelchair access, under-sink cabinet doors removed for knee space and a barrier-free shower.
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Living Social
Months after Staci Hayes gave birth to her daughter, she began to suspect her extreme exhaustion was not normal. “How I felt went beyond [the idea that] I have a newborn and I’m tired,” says Hayes. After consulting with doctors and undergoing a range of testing, Hayes received a diagnosis of myasthenia gravis (MG). At the age of 40, every aspect of her life changed. Her 20-year career as a nurse ended, her marriage fell apart, and she became a single parent with a 3-year-old child.
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Earning Potential
Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.
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Investing in the Future
Dr. Chris Rosa, vice chairman of MDA’s Board of Directors and the University Assistant Dean for Student Affairs at the City University of New York, was among the speakers on hand to help launch MDA’s new brand in January. In his remarks that day, Dr. Rosa shared the story of his own journey with muscular dystrophy, starting with his diagnosis at age 9.
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MG: Can the Immune Response Be Tamed?
It can start with nothing more than a drooping eyelid or a slight slurring of speech, either of which can come and go and improve with rest. But it can progress, often gradually over weeks or months, to affect all the voluntary muscles, including those controlling breathing. Weakness may be minimal early in the morning after a good night's sleep and worsen throughout the day, especially after periods of activity.
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Cushion Comfort
Anyone using a wheelchair, even for a few hours a day, needs to sit on a cushion. The most obvious reason for using a wheelchair cushion is simply to offer general comfort by reducing friction and vibration. A good cushion also can wick away moisture and keep you cool.More importantly, a quality cushion can protect skin from bruising and breakdown. Pressure sores or ulcers are a serious risk because sitting all day reduces blood flow, as does loss of muscle. Pressure sores can, in the worst cases, lead to hospitalization, surgery and infections, and they reduce the strength of the skin even after they’re healed.
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