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Recent Quest Articles
Bidets: A Disability Friendly Way to Go
A few years ago, Bonnie Guzelf of Phoenix began having difficulty using the bathroom by herself. Guzelf, who has a slowly progressive form of ALS (amyotrophic lateral sclerosis), found that her hands, arms and legs were getting too weak to perform basic hygiene. A friend who is an occupational therapist suggested she get a bidet.
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Enhancing Blood Flow to Exercising Muscles
Ronald Victor admits it: He never set out to study muscular dystrophy. As an adult cardiologist specializing in hypertension (high blood pressure) and neurologic control of cardiovascular mechanisms, he’s a relative latecomer to the muscle field, but far from a reluctant one.Victor, who’s now associate director of the Cedars-Sinai Heart Institute and director of the Cedars-Sinai Hypertension Center in Los Angeles, has been interested for decades in how the body allocates blood supply to various tissues under different conditions — something that’s largely under the control of the autonomic nervous system.
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Getting a Tracheostomy: My Story
I am writing this article about getting a tracheostomy for others with muscular dystrophies. Many patients are reluctant to have the procedure done because they fear they will lose the ability to talk or to swallow. Neither is true. And, the new trach tubes make it possible to easily take care of a tracheostomy and the tubes.
Read MoreResearch Updates Spring 2011
In this issue: MDA awards 44 new research grants * A recently discovered gene variant may indicate severity of DMD * Heart care in Duchenne MD and Becker MD addressed at MDA-sponsored meeting * Duchenne-Becker 'read-through' drug to begin development * Flow charts may aid in diagnosing CMT
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Doctors Talk Heart to Heart
Update (Jan. 23, 2013): As of early 2013, MDA's DMD Clinical Research Network includes these five sites: University of California, Davis (UC Davis); Nemours Children's Hospital in Orlando, Fla.; Washington University in St. Louis; Nationwide Children’s Hospital in Columbus, Ohio; and Children's Medical Center in Dallas. See Help Today, Help Tomorrow is Goal of MDA's Duchenne Clinical Research Network to learn more.
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Nationwide Children's Podcast Explores Immunity in DMD
A January 2011 podcast from Nationwide Children's Hospital in Columbus, Ohio, probes a subject that's been on the minds of many researchers, doctors and families: autoimmunity (self-immunity) in Duchenne muscular dystrophy (DMD).The podcast consists of an approximately 15-minute discussion between two physicians with the Center for Gene Therapy at Nationwide, neurologist Jerry Mendell and neurogeneticist Kevin Flanigan. It's part of a series of monthly podcasts, produced at Nationwide and archived on the institution's website, called This Month in Muscular Dystrophy.
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Weight Loss from a Wheelchair: My Plan
Note: Always consult your doctor before undertaking a weight loss plan. I have always had problems with my weight. From the time I was 5, I’ve had round, chubby (some would say pinch-able) cheeks — and my cheeks weren’t my only round part.When I was in high school I started really battling with weight. I decided to diet my senior year and lost 12 pounds. I thought that was the toughest dieting I would ever do, and I thought I was done with it. Wrong!
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'I Can Eat That!' Cookbook for Easy Chewing and Swallowing
Have you ever considered whether you eat to live or live to eat?Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.
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FA: Idebenone Clinical Trials
Overall, idebenone has been shown to be safe and well-tolerated in a number of phase 1, 2 and 3 human clinical trials dating back to 1999. The most common side effects are mild to moderate gastrointestinal issues such as diarrhea, nausea and indigestion. Early trials at low doses first demonstrated the potential for idebenone to reduce FA-associated cardiomyopathy (heart muscle abnormality).
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Strategies to Improve FA-Affected Speech
Anne Wallace, speech-language pathologist and clinical associate professor in the Department of Communication Sciences & Disorders, University of Iowa in Iowa City, has been at that facility for 20 years. During that time, she’s had a long-standing relationship with the pediatric specialty clinics, including the MDA clinic directed by child neurologist Katherine Mathews, and has worked with many children and young adults with Friedreich's ataxia (FA).
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 programs are only available in the U.S.
