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Recent Quest Articles

In Focus: Oculopharyngeal Muscular Dystrophy (OPMD)

OPMD  is a form of muscular dystrophy in which symptoms usually first appear between the 30s and 60s, and primarily involve the muscles of the upper eyelids and the swallowing muscles. As these muscles weaken, patients have difficulty keeping their eyes open and find that food and liquids are increasingly hard to swallow. As OPMD progresses, it can weaken the muscles of the limbs, particularly the legs.

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OPMD: Surgery to Help Move Food Past Weak Throat Muscles

Starting with the tongue and moving down the throat and into the esophagus are a series of muscles that constrict and push food from the mouth to the stomach. The tongue and throat muscles weaken severely in  OPMD, leading to choking, inhaling food into the lungs (“aspiration”) and lung infections (pneumonia). Speaking also can be adversely affected by weakening tongue and throat muscles. 

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Accessible Vehicles Q&A

Good information is the key to saving money and getting the most value for the dollar when making a big-ticket purchase like a wheelchair-accessible vehicle.With that in mind, Quest consulted the experts for answers to some common questions facing consumers. A:  Certified mobility dealers help consumers buy the right vehicle and adaptive equipment to meet their mobility needs now and  in the future. Future planning is especially important for people with muscle diseases that get progressively worse over time.

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The International Heartsongs Project

Families face complicated health care decisions when coping with a child’s  neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.

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Research Updates Summer 2009

Story includes research about: Becker muscular dystrophy, Duchenne muscular dystrophy and oculopharyngeal muscular dystrophy. Scientists at Children’s National Medical Center in Washington, Carolinas Medical Center in Charlotte, N.C., and the National Center of Neurology and Psychiatry in Tokyo, have successfully treated dogs with a disease closely resembling  Duchenne muscular dystrophy (DMD), using a molecular treatment strategy called exon skipping.

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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.

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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.

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Caregiver 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.”

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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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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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