Quest Online
By Christina Medvescek
A friend recently recounted a harrowing story about being trapped in her bathroom by a malfunctioning ceiling lift until her regularly scheduled caregiver showed up and rescued her. She waited five hours. Oh yes, and she was hanging upside down most of that time. “You just deal with it,” she laughed. “You try to get comfortable, you nap, you work around it.” As a result of that experience, she later took significant steps to improve her safety network.
Shortly after that conversation, I started thinking about grit. It seems to me that some people with muscle diseases have been given an extra helping of it.
“Grit” isn’t glorious or glamorous, but rather tough and enduring. It’s the tiny bit found at the heart of a pearl. To say something is “gritty” is to accuse it of being real, without frills, hard-core and true in the most basic way.
Grit is on my mind these days because the times they are a-changing and, like many people, sometimes I also have the feeling I’m hanging upside down, temporarily frustrated by events beyond my control. But with a little grit, things not only will be OK, they’ll be better.
As was announced in “Keeping in Touch” , Quest has switched from a bimonthly to a quarterly publication. Beginning with this issue, the print version of the magazine will come out in January, April, July and October.
Quest began in 1994 as a thin quarterly production printed in two colors. The inaugural 24-page issue contained one page of research updates.
Fifteen years later, research has grown in ways we couldn’t have conceived —
and Quest needs to grow too. So what at first appears to be a cutback actually has been a catalyst for growth.
Though publishing less frequently, Quest is expanding the amount of news it provides, both in print and online. As we make better use of technology, Quest remains a steady partner in your journey with muscle disease.
Here are some of the changes you can expect to see:
• Bigger issues of Quest with more articles about research, health and living with disability. The new quarterly Quest sports a new design and typeface that (we hope) makes it easier to read. The pages also are greener; our new paper, though thinner, is 10 percent recycled post-consumer waste. Our expanded size allows us to more deeply explore single subjects, as you’ll see in the April issue, which includes a special section on exercising with a muscle disease.
• Timely “Extra!” articles on the new Quest Magazine Online page. Quest’s new page on the MDA Web site (www.mda.org/questmagazineonline) features a revolving carousel of regularly updated “Extra!” articles about research, legislation, technology, health, durable medical equipment, caregiving, education, careers and not a few gritty individuals — in short, more stories of use to those living day to day with muscle diseases. Visit the page and sign up to be e-mailed monthly summaries of online articles.
• Easier access to Quest resources. Looking for information or products that make it easier to live with disability? Quest Magazine Online provides quick access to back issues of Quest and to the search tool Stories by Topic. A directory of manufacturers and suppliers of adapted products includes hot links to their Web sites. The digital version (exact replica) of the printed magazine also is available for those who prefer to read Quest page-by-page online.
• More interactivity. A new feedback feature allows readers to send us comments about either print or online Quest articles. Selected feedback will be posted on the site and/or run in the magazine.
• Not online? You’ll miss nothing in research updates and research news in each print issue of Quest. Online articles can be accessed by calling (520) 529-2000, the MDA publications department or your local office, (800) 572-1717, and asking to be mailed a copy.
Here are a few of the Quest Extra articles you’ll see when you visit Quest Magazine Online at www.mda.org/questmagazineonline :
• The most recent research updates.
• “Zero G Flight” — Take a video
trip and experience weightlessness with a young man with Duchenne muscular dystrophy.
• MDA’s new clinical trials network —
What projects will they be pursuing?
• “Bringing the World to Dale” — how an artist with muscle disease helped a friend with muscle disease finally get online.
There’s a wonderful saying: The pessimist complains about the wind; the optimist expects it to change; and the realist adjusts the sails. That saying was the inspiration for the cover shot of this issue. Because it’s a fact that change, taken with a bit of grit, can lead to the most amazing things.
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