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Recent Quest Articles

504 Plans: What Parents Should Know

Some students with  muscle diseases  have IEPs (Individualized Education Plans) and some have 504 plans. What’s the difference? Should parents be concerned if the school says their child doesn’t qualify for an IEP, and creates a 504 plan instead — or vice versa?Not necessarily. As the accompanying chart and diagram shows, there’s a lot of overlap between the two plans. The key is for parents to be aware of the pros and cons of each, and keep a close eye on how well the plan is meeting their child’s special needs at school.

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What Kind of Exercise Can Be Done By ...

Unfortunately, even when MG is under control, as it usually is these days thanks to effective medications, lack of endurance when exercising and excess weight gain as a side effect of medication and inactivity remain problematic. People should not exercise to exhaustion but may undertake submaximal aerobic exercise, such as walking, swimming or using a stationary bicycle. It’s also OK to try some mild resistance exercise, using light weights (no more than 5 to 10 pounds) or stretchable bands. Several short periods of exercise are better than one long one.

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In Focus: Spinal Muscular Atrophy (SMA)

This report provides an overview of  spinal muscular atrophy (SMA), a disease in which a loss of nerve cells in the spinal cord causes weakness or paralysis of variable severity.Chromosome-5-linked SMA, by far the most common form of the disease, lends itself well to certain therapeutic interventions because of its unusual genetics. In contrast to the situation in many other genetic diseases, everyone with this type of SMA makes at least a small amount of the necessary protein in which they’re deficient, called SMN. That makes it easier to devise strategies to increase SMN levels further, and easier for the immune system to tolerate the increase than in many other disorders.

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SMA Research

This decade, for the first time, scientific research in  spinal muscular atrophy (SMA)  has yielded enough information to allow the pursuit of several avenues of disease treatment and prevention.Most are centered around increasing cellular levels of a protein called SMN (survival of motor neuron), first identified in the mid-1990s as the root cause of almost all cases of SMA.

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Exercising with a Muscle Disease

Exercise: Love it. Hate it. Gotta do it.In these articles, Quest looks at the many sides of exercise for people with  muscle diseases:Much of the conventional wisdom about exercising isn’t true for people with muscle diseases, and doing it wrong may cause irreversible muscle damage.As you read through the exercise articles in the magazine, one thing is clear: Each body is unique, and its owner knows it best. Please filter all this information through your own wisdom and experience, and please share it with your physicians, therapists and trainers.

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Research Updates Winter 2009

Story includes research items about:  centronuclear myopathy; Duchenne, limb-girdle, and Emery-Dreifuss muscular dystrophies; and spinal muscular atrophy.Missing or reduced levels of an enzyme known as neuronal nitric oxide synthase (nNOS) at its normal location on muscle-fiber membranes prevents blood vessels that supply active muscles from relaxing normally, leading to exercise-associated fatigue, says a team of researchers from the University of Iowa in Iowa City, the University of Michigan in Ann Arbor, and the University of Washington School of Medicine in Seattle.

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Stand Up!

Ten-year-old Morgan Fritz of St. Peters, Mo., received a  spinal muscular atrophy (SMA)  diagnosis when she was 15 months old. Three months later, she began a standing program, and she’s kept at it ever since.Instead of a wheelchair, Morgan, who was the 2005 MDA National Goodwill Ambassador, uses a Standing Dani Dynamic wheel stand from DavisMade as her main form of mobility. She typically stands for four to five hours per day, as recommended by her physical therapist (PT).

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The Genie’s Out of the Bottle

From the Human Genome Project to TV medical and crime shows, to an evergrowing list of genetic tests purported to diagnose diseases, trace your ancestry or predict your future, DNA seems to be the subject of the day.Even those who choose not to undergo testing find it hard to ignore. Whether or not to get tested is a personal decision. But since the DNA testing genie isn’t going back in the bottle, it’s a good idea to get to know him.

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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.”

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Parents Beat Back Burnout

All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job.But parents of children with muscular dystrophy or other  neuromuscular diseases  know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called  burnout.

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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 services are only available in the U.S.

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