posted on April 1, 2009 - 4:34pm
While I lay on a plinth, a Swiss doctor gestured that I should lift up my left leg. He bear-hugged my leg and resisted its elevation with his full body weight. He grunted as he fought my movement.
He wasn’t the only person prodding and inspecting me. A team of doctors, biokineticists and physiotherapists surrounded me. It was like the United Nations of medics. Besides the Swiss doctor, there was...
posted on July 1, 2008 - 2:00pm
I’m 44 years old, and was officially diagnosed with Friedreich’s ataxia (FA) at age 19, so you might say this article is 25 years in the making! I can tell you with absolute certainty that over these 25 years I’ve learned that “we’re all in this together.”
Carl Yeager: Artist with SMA evolves from film-based photography to electronic imaging
posted on July 1, 2008 - 2:44pm
Life was good for Carl Yeager back in the 1970s. By day, he was a master mechanic at a large Philadelphia hospital. By night and on weekends, his talented hands played a different tune … literally. As a pianist, he played professionally in bands opening for big-name rock groups like Chicago, Iron Butterfly, and Blood Sweat and Tears.
posted on May 1, 2007 - 3:58pm
I once was very proud of my strength. Being the strongest, fastest and hardest-working was very important to me. But as you may have guessed, my story doesn’t end with a gold medal. I’ve achieved much more. My athletic career was terminated by an injury that may have been related to my muscular dystrophy, although I didn’t know at the time that I had MD. All I knew was the strength in my muscles...
A 50-year-old with DMD escapes his nursing home via the Internet, thanks to a friend with SMA
posted on January 2, 2009 - 1:40pm
Dale Dulaney travels the World Wide Web via a mouth-controlled computer obtained by his friend Karen Wheeler, who also has a neuromuscular disease.
posted on September 1, 2007 - 11:54am
Three times I broke my right foot. Three times in the same place — directly below my big toe.
Strangers would ask why I was on crutches and wearing a cast, and I concocted elaborate stories to explain my temporary impairment.
“Skiing, over the holidays,” I’d say.
“Car accident. The vehicle was totaled so a broken foot is a minor inconvenience.”
“Dancing. My partner has two left feet.”
posted on September 1, 2006 - 3:52pm
Carolyn Bush
We all know the stereotypes of aging. Either you’re seen as decrepit with one foot in the grave, or you’re supposed to be a model for vital aging — Botoxed 85-year-old women do Pilates and elderly men complete Iron Man competitions and scale Mt. McKinley.
Helping children understand their diagnoses
posted on July 1, 2006 - 2:23pm
Joanne Wechsler remembers when she first formally told her preschool-age son Adam that he “had muscular dystrophy.”
“I don’t have that!” he protested loudly. “I don’t have muscular dystrophy!”
posted on March 1, 2005 - 11:20am
Miranda Jackson’s first signs of muscle weakness came in first grade. A bright youngster with an engaging smile, she struggled not only with lack of coordination from myotonic muscular dystrophy (MMD), but also with pain from a form of juvenile arthritis and depression from bipolar disorder.
posted on December 31, 2009 - 1:19am
According to the National Family Caregivers Association, more than 50 million Americans care for loved ones with a chronic illness, disability or old age.
Caregivers assist people with neuromuscular disease in accomplishing many tasks of daily living. From eating to grooming, dressing to transferring, traveling to sleeping, and more, caregivers truly make life fully possible.
