
Latest Editions
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Quest Issue 2, 2022
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Quest Issue 1, 2022
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Quest Issue 4, 2021
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Quest Issue 3, 2021
Recent Quest Articles
Shy 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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A Muscle Disease Concealed by a Muscular Physique
Every grade school has at least one: that scrawny kid who's a laughingstock in school sports and a favorite punching bag for bullies.In many ways, Christoph Lossin was that kid, except that he was anything but scrawny. His athletic attempts usually ended in embarrassment, and he was a sure loser in fistfights. But he was also a strapping young man, with bulging muscles in his arms and legs. Unfortunately, when he needed them most, those impressive-looking muscles always seemed to let him down.
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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.
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Profile: Hoping for a Miracle, but Taking What Comes (Adrianne Gayman)
Adrianne Gayman was born to Kelly and Matt Gayman of Rich Hill, Mo., on Feb. 16, 2000. Doctors soon diagnosed type 1 spinal muscular atrophy and suggested that the young couple not go to great lengths to keep her alive. The Gaymans instead had physicians put in a gastrostomy tube for Adrianne's feedings and prescribe BiPAP assisted ventilation for her.
Read MoreSimply Stated: Elevated Enzymes
Elevated enzymes are a frequently encountered problem in general medical practice, but their meaning often isn't so simple to discern. When they're found with a neuromuscular disease, the situation can get complicated.There are thousands of enzymes in the cells in our bodies, where they act as catalysts for all the chemical reactions that take place in these cells. Without them, these reactions either wouldn't occur or would be too slow for the cells' needs.
Read MoreAdvances in Inclusion-Body Myositis
On winter mornings in icy Prescott, Wis., Ed Bankston gets up early, and, as he has done for many years, drives to his office in St. Paul, Minn. Bankston, 55, has been an attorney with the St. Paul District of the U.S. Army Corps of Engineers since 1988, and he now heads the district's legal department.
Read MoreSorting Out Speech Services
"People always think speech therapy is related to speech and not to assistive technology or swallowing disorders," says Sharon Veis, a speech-language pathologist at the Voice, Speech and Language Service and Swallowing Center of Northwestern University in Chicago.Veis says she doesn't mind being called a "speech therapist," but she and other speech professionals prefer the term used by the American Speech-Language-Hearing Association, which is "speech-language pathologist," or simply SLP.
Read MoreSimply Stated: Germ Line Mosaicism
One area that causes frequent misunderstanding is the phenomenon of germ line mosaicism.Here's a typical question (actually a composite of several queries to "Ask the Experts"): Five years ago, I gave birth to a child with Duchenne muscular dystrophy (DMD). At that time, they tested my blood cell DNA and said I didn't have the deletion in my dystrophin genes that causes DMD. My son, Danny, does have a deletion.
Read MoreKeeping Your Focus: Eye Care
When people think about neuromuscular disorders, eye problems usually aren't the first thing that comes to mind. That makes sense, because most eye problems in neuromuscular disease are, thankfully, not too severe, treatable with therapy for the underlying disorder, or correctable with special lenses or surgery. But in some disorders, problems can persist, and they range from nuisances to major impediments to quality living.
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- 2019 Conference Edition
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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.