Recent Quest Articles
Not 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 More
What 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 More
Nutritional Considerations While on Corticosteroids
Side effects of prednisone and other corticosteroids include increased appetite and weight gain, as well as osteoporosis (porous and weakened bones). Appropriate nutritional supplements while being treated with prednisone include calcium and Vitamin D.Weight gain is a side effect of prednisone regardless of how much a person eats. However, since many people on prednisone also have an increased appetite, they may gain additional weight from overeating. This weight gain may result in further difficulties with mobility.Read More
Is Your PCA Driving You Crazy?
Personal care attendants, personal assistants, attendant caregivers: Whatever you want to call them, we all know how important they are to our independence. Depending on somebody isn’t easy. Here are some ways to make the road smoother.For the relationship to be successful, both the personal care attendant (PCA) and the consumer need to understand their roles and what’s expected of them. When there’s miscommunication, trouble often follows.Read More
Where Are all the PCAs?
Wanted: Entry-level Taco Bell “crew worker.” Candidate must be able to perform one or more repetitious tasks in a highly standardized manner and operate automatic machinery. Pay: “competitive” wage with the possibility of raises. Immediate access to basic benefits package. Generous 401K match. Opportunities for training and career advancement.Read More
Through the Looking Glass with FSH Dystrophy Researchers
In 1990, Sara Winokur was a doctoral student in the laboratory of John Wasmuth, a professor of biological chemistry and a prominent researcher in genetics at the University of California at Irvine.It was an exciting time in genetics. The genes that, when mutated (flawed), cause diseases, were rapidly being identified. Among the first, in 1986, had been one for Duchenne muscular dystrophy.Read More
Building the IEP Puzzle
Whether it’s your first Individualized Educational Plan or your 10th, it never hurts to add some valuable tips to your IEP toolkit. Here are words of advice from parents and experts.“You can do a lot to improve the quality of your child’s life and education, and there’s no higher calling,” says Tina Riley of Jay, Maine, whose son, Bryan, 6, has Duchenne muscular dystrophy (DMD). “Do your homework, and know as much as you can about your child’s disease and special education laws.”Read More
Scientists Bullish on Stem Cells for Muscle Repair
MDA grantee Giulio Cossu, director of the Stem Cell Research Institute of the San Raffaele Scientific Institute of Milan (Italy), was part of an Italian and French research team that restored mobility to two dogs and stabilized function in a third, using stem cells taken from muscle blood vessels.Maurilio Sampaolesi, at the San Raffaele Scientific Institute in Milan and the Institute of Myology at the University of Pavia (Italy), and colleagues, isolated mesoangioblasts from canine muscle biopsy samples and administered them through an artery into 10 dogs with a disorder resembling human Duchenne muscular dystrophy (DMD).Read More
Surgery Sometimes, Bracing Often, Caution Always
Diane Lareau, 35, of Linwood, Mass., always knew there was something wrong, but her mother kept telling her she was just pigeon-toed and that putting her shoes on the wrong feet would fix the problem.It didn’t, and by her late teens, she remembers, her toes were “all bent and just a mess. It looked like a bird’s claw on both feet. I was actually almost walking on the outsides of my ankles.”Read More
One Good Turn
When turning over in bed becomes difficult for a person with muscle weakness, usually two people suffer sleep deprivation — the “turnee” and the “turner,” or person who wakes up several times a night and helps with repositioning.Consequently, any sleep aid for people with mobility problems is a sleep aid for their caregivers as well. Although some sleep aids, such as alternating pressure mattresses or turning beds, can be pricey, they provide a two-for-one solution to a frustrating problem, and pay big health dividends over time.Read More
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 programs are only available in the U.S.