Recent Quest Articles
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.Read More
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 More
Truth, Lies and Tracheostomies
When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support.But when a tracheostomy and ventilator are suggested for better breathing, some people see NIV as “enough” and a trach and vent as somehow “too much.”Read More
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
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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.