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Quest Issue 2, 2019 -
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Recent Quest Articles
The 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.
Read MoreAll Fall Down
Some people have nightmares about falling off cliffs. Brad Williams has nightmares about falling — period.“Whenever I’m walking, falling down is always the major thought on my mind,” says Williams, 39, of Alexandria, Va. “It has to be on my mind a lot for me to be dreaming about it.”Williams has Miyoshi distal myopathy, a slowly progressive form of muscular dystrophy that primarily affects the extremities. He hosts an MDA Internet chat under the nickname “dysf,” and notes that other chat participants also have reported falling nightmares.
Read MoreWhen Neuromuscular Disease Affects the Brain
If you’re the parent of a child with a neuromuscular disease, you’ve probably heard something about learning disabilities, mental retardation or emotional problems that accompany some of the muscular dystrophies and related diseases.But this information is often expressed in vague, general terms, leaving a parent wondering what specifically has gone wrong, whether the child’s school problem is directly related to his neuromuscular disease or not, and — perhaps most important — what can be done to help.
Read MoreShy Kids with Disabilities: To Push or Not to Push?
James — a hypothetical boy — is 14 and has Duchenne muscular dystrophy (DMD). James has always been a little reserved around strangers, but over the past several years — especially since he lost the ability to feed himself — he has become increasingly resistant about going out in public, to the point that his mother practically has to beg him to go to a movie.
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Understanding Heel Cord Surgery
Tom Baker, 14, is the second child of Harold and JoAnn Baker of Dover, Ohio. When he was a small boy, the family noticed that he walked "funny," certainly not like their first child, Jessica, now 18, or their youngest, Lisa, 11.Still, doctors weren't terribly concerned until the Bakers took Tom for his kindergarten physical. "The doctor noticed that he exhibited the Gowers' sign," JoAnn recalls, referring to the way children with leg muscle weakness use their arms to brace themselves when getting up from the floor.
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Coping with Neuromuscular Disease in Infants
It's the kind of thing you think can never happen to you — until it does. Your baby is born with a life-threatening condition that fascinates but puzzles pediatric specialists, while it terrifies you and turns your family's life inside out.Often such surprises come without warning. There's no family history of any such disorder, and prenatal tests have revealed no serious problems.
Read MoreMDA 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 services are only available in the U.S.
