Health Care

Matters of the Heart: Cardiac Problems in Emery-Dreifuss MD

Jason Adamo’s life isn’t markedly different from that of any other teenager. The 17-year-old high school junior has a part-time job as a cook at a restaurant near his home in Port Charlotte, Fla., and enjoys flying radio-controlled model helicopters in his spare time.But had it not been for the alertness and persistence of his mother, Katherine, an intensive care nurse, things could have taken a tragic turn not long ago.

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.

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.

Keeping 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.

Physical Therapy: Flexibility, Fitness and Fun

Say "physical therapy" and most people think of World War II movies with wounded heroes struggling with weights and pulleys, athletes nursing injuries in whirlpool baths, and heart attack survivors sweating on treadmills.Say "physical therapy" and "muscular dystrophy" in the same sentence and you may get the same uncertainty from anxious parents that you do from skeptical insurance company representatives.

Who's Who on the Health Care Team?

Time was when you didn't have to guess who was who in a hospital. Doctors were mostly men, and they wore white suits and carried stethoscopes in their pockets. Nurses were women, and they wore starched, white uniforms and caps. Then there were volunteers, who wore candy-striped outfits or pink smocks, and a few clerks in street clothes.

Scoliosis Surgery

"I've had a lot of different surgeries for a lot of different problems," says Todd Palkowski of Franklin, Wis. "Not all of them have been successful. But this one works."He's talking about the spinal fusion he underwent almost 20 years ago to correct severe scoliosis. Palkowski, who has spinal muscular atrophy, was 13 at the time. Like many of those with SMA and nearly all of those with Duchenne muscular dystrophy, his spinal muscles had become too weak to hold him erect. The surgery, which involved the placement of a pair of metal rods down the length of his spine and the fusion of his vertebrae, has kept him upright and properly seated in his wheelchair. It gave Palkowski the mobility to work full-time as a recreation therapist.

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.

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