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Quest Issue 3, 2021 -
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Recent Quest Articles
To Tilt or Not to Tilt: The Benefits of Tilt-in-Space
A wheelchair with the power tilt (tilt-in-space) feature allows the whole chair to tilt up to 30 or 60 degrees, depending on the model, while maintaining your hip and knee angles at 90 degrees. In most cases, this is done with the touch of a button, allowing you to move your body independently.Let’s take a look at whether tilting is beneficial to the wheelchair user, particularly one with a neuromuscular disease. If so, when should those of us with progressive diseases start thinking about upgrading to a tilt-in-space wheelchair?
Read MoreFatigue
In its broadest sense, fatigue is defined as a lack of energy, a subjective feeling of being tired. Fatigue also occurs when muscles decline in force — in other words, they poop out with overuse.Most people complain of fatigue at one time or another, says Julie C. Haviland, a physician at St. Vincent Mercy Medical Center in Toledo, Ohio.
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Parent-Caregivers: Learning to Let Go
College senior Roy Avery defines the difference between a parent and a caregiver this way:“A caregiver is someone who’s there to help you meet your needs.”A parent has a vested interest in your well-being and future. They love you.”Avery, 23, has Duchenne muscular dystrophy (DMD) and can’t lift or position his arms and legs. He relies on a power wheelchair and noninvasive ventilation to help him maintain a B+ average in computer science at Central Washington University in Ellensburg.
Read MoreMcArdle’s Disease: The Right Diagnosis Can Lighten the Load
When Michael Marino, 47, of Selden, N.Y., was a child, his parents thought he was lazy and sent him to a nautical military school to straighten him out. It didn’t.He had his first muscle cramps at age 9 or 10, from the extreme sit-up regimen, and couldn’t straighten up for two days.“I thought the pain meant I was building muscle, but now I know I was damaging it.”
Read MorePutting Out the Fire
These days, you can find Giovanna Albers at home with her family in Imperial, Mo., or on the job as a hostess at LongHorn Steakhouse in nearby Sunset Hills, or swimming laps at the YMCA.The trim, attractive, even athletic-looking 38-year-old radiates good health. So it comes as a surprise that her walk demonstrates profound weakness of her hip and thigh muscles, and that she occasionally falls.
Read MoreThe Great Trach Escape: Is it for You?
Mike Neufeldt likes his job at motorcycle manufacturer Harley-Davidson's Milwaukee headquarters, where he keeps an eye on dealership Web sites to make sure they meet company standards. After work, he sometimes shares a beer with co-workers, and he's been thinking about how someday he'd like to move out of his parent's house and into a place of his own.
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The Pros & Cons of Genetic Testing
Sometimes the question facing people affected by a neuromuscular disease isn't "What kind of test should I have?" but "Should I have a test?"Finding the correct diagnosis is a straightforward scientific process requiring technological tools and medical detective work (see " Getting the Correct Diagnosis in Neuromuscular Disease "). But like opening Pandora's box, receiving a diagnosis is anything but straightforward. A diagnosis, especially of a genetic disease, can carry an emotional punch that sends patient and far-flung relations reeling.
Read MoreGetting a Correct Diagnosis in Neuromuscular Disease
*Note: In the print edition of Quest, this article was titled "Rounding Up the Usual-- and Not So Usual-- Suspects." The scene is familiar to everyone who watches crime dramas. The safe has been opened, and the hotel guests' jewelry and other valuables are missing. What happened, and when, and who's responsible?
Read MoreManaging Myasthenia
Charles Ranly is a busy man, but he always takes time to stop and smell the roses or more accurately, the pansies, zinnias, begonias and other seasonal flowers at Webb Hill, the 223-acre country club he owns in Wolf City, Texas.The club boasts an 18-hole golf course and has over 600 members. Ranly, 68, oversees 12 to 20 employees (depending on the season), hosts golf tournaments and civic events year-round, and personally attends to the 10,000 or so flowers that decorate the grounds.
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When Form Meets Function: Exploring Surgery to Restore Muscle Power in FSH Dystrophy
The trouble started for Claire Walker when she was in kindergarten, when her physical education teacher noticed that she couldn't do sit-ups like the other children and that her back seemed "lopsided." Claire's parents took her from their home in Louisiana to see Yadollah Harati, an MDA-affiliated neuromuscular disease specialist at Baylor College of Medicine in Houston.
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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.