posted on July 1, 2007 - 10:11am
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.”
When a person’s overall quality of life is no longer acceptable, that’s...
posted on September 1, 2007 - 10:07am
When Patrick and Sarah Foye of Pine Brook, N.J., had their baby boy, Adam, in 2001, there was little reason to believe at first that anything was wrong. "Adam had a normal birth," Sarah says, but things didn't go as well as expected in the months that followed.
Patrick is a physician specializing in rehabilitation, and Sarah is an occupational therapist, so they were quick to note that something...
Caring for the CMT-affected foot
posted on September 1, 2006 - 3:03pm
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.”
posted on March 1, 2006 - 4:26pm
On Nov. 1, there appeared in Circulation, the journal of the American Heart Association, a somewhat unusual article. Unlike most reports in Circulation, which address common cardiovascular problems like heart attacks, strokes and cholesterol control, it focused on treating cardiac disease associated with Duchenne and Becker muscular dystrophy.
It’s been estimated that 95 percent of boys with DMD...
Array of treatments means myasthenia gravis usually isn't so grave
posted on May 1, 2003 - 9:47am
Charles Ranly, who's had MG for eight years, oversees the plantings at his Texas country club. Photo by Charlie Bublik
posted on March 31, 2010 - 2:26pm
In 1960, the medical journal The Lancet published a sobering report of a 21-year-old student whose broken leg required surgical repair but who was less concerned about his leg than the risk of general anesthesia. He told his doctor that, since 1922, 10 of his relatives had died as a direct result of inhaled anesthesia.
Physicians and scientists will meet Jan. 21-22, 2011, in Columbus, Ohio, at an MDA-sponsored conference about cardiomyopathy in Duchenne muscular dystrophy
posted on January 18, 2011 - 4:06pm
Experts from around the world will gather Jan. 21-22, 2011, at an MDA-sponsored conference about the heart in Duchenne muscular dystrophy (DMD).
A physician with mitochondrial myopathy describes undergoing and taking care of her tracheostomy
posted on March 31, 2011 - 10:23am
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.
Adults with MMD1 and minor cardiac conduction defects benefit from invasive testing and possible pacemaker insertion
posted on April 3, 2012 - 6:00am
New evidence suggests that relatively aggressive management of seemingly minor cardiac conduction defects in adults with type 1 myotonic dystrophy (MMD1, or DM1) can prolong survival.
'Best practices' for treating various neuromuscular diseases are described in this third and final report on MDA's 2012 Clinical Conference
posted on April 19, 2012 - 6:00am
Several experts presented their views of "best practices" for care of people with neuromuscular disorders at MDA's 2012 Clinical Conference, held in Las Vegas March 4-7.
Many questions remain about optimal care in these disorders, but it's clear that attention to heart and respiratory function are of paramount importance.
This article looks at:
