Psychological Factors

One woman with spinal muscular atrophy uses the power of invisibility to her advantage

posted on October 8, 2015 - 9:27am
I was born with a superpower, only it took most of my life to realize that I had it. I had suspicions when I was younger, but never fully understood the breadth and depth of this superpower until recently. I have the power to be invisible. I can be in a restaurant and the wait staff doesn’t see me. I can be going down the street where people are aggressively distributing pamphlets, and I...
posted on May 1, 2007 - 2:05pm
QUEST Vol. 14, No. 3
Carlie Brinker of Millersburg, Ohio, tries to walk to the mailbox and back a couple of times a day and to her sister’s house, half a mile away, if the weather is good.
posted on January 1, 2007 - 9:27am
QUEST Vol. 14, No. 1
Look! That’s a word I’m used to hearing from young voices. True to form, a boy was staring at me in the Wal-Mart parking lot as the word was spoken. But this time, my nephew Carter was the one saying it, while trying to show the staring boy a giant dinosaur balloon. Carter believed the balloon was much more interesting than his Aunt Katrina. He couldn’t understand why the little boy was looking...
posted on November 1, 2006 - 11:53am
QUEST Vol. 13, No. 6
The saying “play is the work of childhood” has been credited to everyone from Swiss developmental psychologist Jean Piaget to TV’s Mr. Rogers. The phrase is so well known because it’s absolutely true — even for children who have disabilities caused by neuromuscular diseases. However, for our children, playing may be more difficult, especially with peers who don’t have disabilities. It’s tempting...
posted on September 1, 2006 - 3:52pm
QUEST Vol. 13, No. 5
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.

Let stares be dares to conversation

posted on September 1, 2006 - 3:14pm
QUEST Vol. 13, No. 5
The sidewalk is bumpy because city planners decided bricks would look better on the main street. Small restaurants reach out to customers by blocking the sidewalk with outdoor dining. Trees, newspaper stands, shoe-shine stands — you name it — all take up space on the sidewalk. Getting down the street isn’t easy when you use a wheelchair.

Helping children understand their diagnoses

posted on July 1, 2006 - 2:23pm
QUEST Vol. 13, No. 4
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!”

Getting your child to go with the flow

posted on July 1, 2006 - 4:42am
QUEST Vol. 13, No. 4
A wise teenager once said, “I think in order to motivate people, you have to kind of know how they work, and it’s different for every person.” Krista Fincke of Tarpon Springs, Fla., has experience with not wanting to do physical therapy (PT), take her medications or wear her ankle-foot orthotics (AFOs).