Latest Editions
-
Quest Issue 3, 2019 -
Quest Issue 2, 2019 -
2019 Conference Edition -
Quest Issue 1, 2019
Recent Quest Articles
In Focus: Periodic Paralysis
This “In Focus” report is part of a series of MDA comprehensive reports about the latest in neuromuscular disease research and management.This report focuses on the periodic paralyses, a group of disorders that result from malfunctions in so-called ion channels, microscopic tunnels that make possible high-speed movement of electrically charged particles across barriers inside cells and between cells and their surroundings.
Read More
ALS: A Vicious Cycle
A vicious cycle in which damage to nerve cells (neurons) in the spinal cord results in the loss of an important mechanism to protect neurons, causing more neuron loss, has been identified as a possible contributor to ALS (amyotrophic lateral sclerosis). Identification of this pathway opens the door to targeting it with therapeutic agents.
Read MoreCaregiver Exercises
It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For a caregiver, this kind of injury can be disastrous.“Loads of people have had to give up caregiving due to injury,” says Brenda Shaeffer, [formerly] a physical therapist at the MDA/ALS Center at Johns Hopkins University in Baltimore. “Then they have to find someone else to provide care, or in some cases find a nursing home.”
Read More
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.
Read More
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.
Read MoreWhat 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.
Read MoreSMA 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.
Read More
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.
Read MoreResearch 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.
Read More
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).
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.
