Nutrition

The author’s weight loss surgery led her to start an exercise program that provided her with more muscle tone — and a lot of fun

posted on January 9, 2014 - 9:21am
To exercise or not to exercise? I can almost hear the people reading this article screaming, “NOT!” Truthfully, until about a year ago, I would have been screaming NOT the loudest, the longest and with absolutely no hesitation. Author Danise Armstrong riding her tricycle. Living with CMT
posted on January 1, 2011 - 4:50pm
QUEST Vol. 18, No. 1
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...

The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties

posted on January 1, 2011 - 1:31pm
QUEST Vol. 18, No. 1
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.

Study finds that children and adults with SMA who can't walk but otherwise have good motor function are at risk for becoming overweight

posted on July 22, 2010 - 10:20am
Children and adults with types 2 and 3 spinal muscular atrophy (SMA) who are no longer walking have an increased risk of being overnourished and overweight if they otherwise have relatively good motor function, a multicenter study shows. The results emphasize the importance of a "dedicated and experienced nutritionist" in SMA medical management, the researchers say. About the study
posted on December 31, 2009 - 1:20am
QUEST Vol. 17, No. 1
A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families. The guidelines pull together recommendations previously released by other groups, such as the American Academy of Neurology, and clarify some areas in which consensus has been lacking.

After a year of planning, new recommendations for physicians caring for DMD patients have been released

posted on December 3, 2009 - 4:23pm
A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families. The complete recommendations,  in printable PDF format, can be read here:
posted on October 1, 2009 - 3:29pm
QUEST Vol. 16, No. 4
During the holidays, eating is as much about friends and family as it is about food. But when muscle weakness makes it difficult or impossible to eat by mouth, some shy away from coming to the table. Nonsense, say those who’ve learned how to work around — or ignore — the social discomfort. Life’s too short to miss out on the fun. Below are adapted dining tips from therapists and people with weak...

The approval of Myozyme in 2006, after decades of research, has transformed Pompe disease from a severely disabling or fatal condition into a treatable, chronic disorder. But responses to the drug vary, its cost is high, and some questions remain unanswered.

posted on January 1, 2009 - 2:25pm
QUEST Vol. 16, No. 1
Mia Hanley of Cranston, R.I., looks pretty much like any 4-year-old preschooler. She’s a normal height and weight, walks well and has good language skills. In fact, when she started preschool at age 3, her fine motor skills were so good that she didn’t qualify for special services in that area. Looking at Mia, most people would never suspect she spends every other Friday at Hasbro Children’s...