Sometimes conquering fear of the uncertain and finding a world of possibilities is just a train ride away
Have you ever felt trapped, isolated or suffocated by transportation-related issues? I’m sure those of you who use a wheelchair, like I do — I have spinal muscular atrophy — or rely on some other form of mobility aid have felt these things a time or two. I know I have. But in the past couple of years, I’ve been determined to face my greatest fear, which includes...
Living with diminishing physical ability means losing some independence, but it doesn’t have to mean less adventure
Independence. It is unique to the human experience. People fight for it. Toddlers to teens demand it. It is the way we live. So when a debilitating disease threatens to take away the thing we cherish the most — our independence — most of us channel our inner “Rocky” and refuse to go down without a fight.
A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19.
Professional home care providers can reduce family caregiver burnout while providing individualized service and greater independence for loved ones
Jeff Stafsholt is a Green Bay Packers fan second to none. Like the Wisconsin football champs, he has a winning attitude and a “never give up” mindset. To help manage the effects of limb-girdle muscular dystrophy, Jeff has a team of home care professionals who assist the 34-year-old as he independently quarterbacks his life.
Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.”
His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp.
“We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...
Deciding to experience an abundant life allows for the fewest regrets in the end
Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him.
But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.
High school graduation made me feel mature, but I grew up the day I realized that I've never been alone in dealing with my disability
It didn’t happen during my childhood, when I walked around wobbly with a pediatric walker, smiling and conversing.
It didn’t happen in my sophomore year of high school, after an emergency room visit led to an 11-day hospital stay and a diagnosis of type 1 diabetes. It didn’t happen my senior year of high school, after a four-day hospital stay to implant a pacemaker to regulate my slow heartbeat....