Latest Editions
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Quest Issue 3, 2019 -
Quest Issue 2, 2019 -
2019 Conference Edition -
Quest Issue 1, 2019
Recent Quest Articles
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?
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Splish Splash: Easier Ways to Get Clean
If you have a neuromuscular disease, is there anything more energy-draining than taking a shower or bath?It’s important, though, and not just because you don’t want to stink up the joint. Because people with disabilities are more sedentary, they’re at greater risk for pressure sores and circulation problems, said Jodi Bales, an occupational therapist (OT) at the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco. Bathing or showering every two or three days helps to reduce these risks by moving your body around and rubbing off layers of dead skin.
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Debatable Destinies
When Rena Szymanski turned 40, she expected to slow down a bit. She never had been athletic, and it sometimes seemed to her that climbing stairs was harder for her than it was for other people, but she thought her strength was “normal” in general.Soon after her birthday, though, she noticed increasing weakness. “I didn’t know what was wrong with me,” says Szymanski, who until recently was working at a stressful job an hour away from her home in Stony Point, N.Y. To her knowledge, there is no history of muscle disease in her family.
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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.
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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 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.
