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Quest Issue 2, 2022 -
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Recent Quest Articles
Canes, Crutches and Walkers
More than 6 million Americans, including many with neuromuscular diseases, use mobility devices such as walkers, canes and crutches to assist them with getting around. The type of device people should use depends on how much assistance they require with weight support and balance. Deciding on the right device calls for expert consultation and some product comparisons.
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What Not to Eat
Mark Tarnopolsky, a professor of pediatrics and medicine at McMaster University in Hamilton, Ontario, remembers clearly a patient he saw more than a decade ago, when he first began specializing in metabolism and nutrition.The patient was an 8-year-old boy who had rapidly become weak and eventually almost completely paralyzed after exercising. His muscles were breaking down, spilling a protein known as myoglobin into the blood and threatening the survival of the boy’s kidneys, if not of the child himself.
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Taking a Closer Look at Myotubular Myopathy
When Patrick and Sarah Foye of Pine Brook, N.J., had their baby boy, Adam, in 2001, there was little reason to believe at first that anything was wrong. "Adam had a normal birth," Sarah says, but things didn't go as well as expected in the months that followed.Patrick is a physician specializing in rehabilitation, and Sarah is an occupational therapist, so they were quick to note that something wasn’t right, even though Adam was their first child.
Read MoreResearch Updates September-October 2007
Diseased featured in this article include: Duchenne muscular dystrophy, Friedreich's ataxia and myotonic musuclar dystrophy.MDA-supported researchers at the University of Pennsylvania and the University of Ottawa report finding a molecule that keeps the muscle protein known as utrophin confined to one small area of a muscle fiber and thereby limits its potential as a therapy for Duchenne muscular dystrophy (DMD). Releasing this brake by blocking this molecule could become a strategy for treating the disease.
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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 MoreFair Housing
When three friends decided to move from the dorms at the University of Wisconsin-Whitewater into an apartment, they knew they might encounter a few challenges: The just-right place they sought had to accommodate three tenants with neuromuscular disease.“We needed space for not just one, but three, power wheelchairs,” explained Michael Chaloupka, 21, who has spinal muscular atrophy type 2. He and his roommates, Matt Strzyzewski, who has Duchenne muscular dystrophy, and Lauren Oftedahl, SMA2, went into the search with a positive attitude because they knew other university students with disabilities who were living in apartments in Whitewater.
Read MoreTruth, Lies and Tracheostomies
When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support.But when a tracheostomy and ventilator are suggested for better breathing, some people see NIV as “enough” and a trach and vent as somehow “too much.”
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The Pain and Promise of Prenatal and Newborn Genetic Diagnosis
Our son is wonderful,” says K.M., a 42-year-old San Francisco area events manager and the mother of a 7-year-old boy with Duchenne muscular dystrophy. “I couldn’t ask for anything more. He’s everything I ever wanted. Of course I wouldn’t want this disease, but he’s just such a great, sweet kid, and it’s been our hope and dream to give him brothers or sisters.
Read MoreWhat Does Blocking Myostatin Do?
Blocking the protein known as myostatin, which limits muscle growth, has been under intense investigation as a strategy for the muscular dystrophies since 2002, when scientists found that mice with Duchenne muscular dystrophy (DMD) that were bred without myostatin were stronger and more muscular than their counterparts with normal myostatin levels.
Read MoreNot 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 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 programs are only available in the U.S.