The Brain in MMD
*Many people interviewed for this article asked not to be identified to protect the privacy of affected family members. “Everybody knows the word apathy,” says a California woman whose 25-year-old daughter’s type 1 myotonic dystrophy (MMD1, sometimes called DM1) was diagnosed just a few years ago. “People use the word loosely. I don’t think it does justice to the reality of this disease.”Read More
Not Enough ZZZzzzs?
Do you suffer from sleep disturbances — snoring, choking or gasping, or restless tossing and turning?Do you wake up in a sweat in the middle of the night, or arise in the morning feeling fatigued, or with headaches, sore throat or dry mouth?Do you experience memory and concentration problems, or find you’re excessively sleepy during the day, falling asleep when you normally shouldn’t, such as during eating, talking or driving?Read More
Simple and Safe
Editor’s note: In the last issue of Quest, Diane Huberty told readers why she was happy with getting her breathing assistance (ventilation) through a tracheostomy tube with a volume ventilator (see “Truth, Lies and Tracheostomies,” July-August 2007). In the following article, Michael Munn tells readers why he prefers having a mask or mouthpiece with the same type of ventilator.Read More
Not Always Smooth Sailing
"Since being on prednisone, I’ve been up and down with my weight and up and down with the milligram dosage,” says Carlie Brinker. “I’m 19, and I’ve been on prednisone for 11 years.”Prednisone is a corticosteroid that’s commonly prescribed for inflammatory conditions, such as the dermatomyositis that Brinker has. Although potent and effective at quelling an unwanted immune response, particularly when inflammation is involved, the medication is well known for its side effects (so much so that Coping with Prednisone, by Eugenia Zukerman and Julie Ingelfinger, published in 1997 by St. Martin’s Press, remains popular for those taking the drug).Read More
Revising Cardiac Care in Muscular Dystrophies
On Nov. 1, there appeared in Circulation, the journal of the American Heart Association, a somewhat unusual article. Unlike most reports in Circulation, which address common cardiovascular problems like heart attacks, strokes and cholesterol control, it focused on treating cardiac disease associated with Duchenne and Becker muscular dystrophy.Read More
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.Read More
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.Read More
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.Read More
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.Read More
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.Read More
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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.