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...

Tough talks demand special skills

posted on November 1, 2008 - 9:48am
QUEST Vol. 15, No. 6
“Mommy, why don’t my legs work?” “It’s not fair, Harrison gets all the attention. What about us? Don’t we matter?” “You’re my husband. Why can’t we talk any more?” “What exactly do you mean, there’s no cure?”
posted on July 1, 2008 - 3:01pm
QUEST Vol. 15, No. 4
Letters to the editor discuss overcoming obstacles, facing everyday difficulties, and sleepiness and the drug Provigil.

Carl Yeager: Artist with SMA evolves from film-based photography to electronic imaging

posted on July 1, 2008 - 2:44pm
QUEST Vol. 15, No. 4
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.

Caring for your child starts with a healthy, happy you

posted on July 1, 2008 - 2:30pm
QUEST Vol. 15, No. 4
All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job. But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.
posted on July 1, 2008 - 2:00pm
QUEST Vol. 15, No. 4
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.”

It's common, offenders often close to home

posted on May 1, 2008 - 9:36am
QUEST Vol. 15, No. 3
“Yesterday I was battered,” begins an entry in the blog of a man with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease). In a series of such entries over a period of months, the writer (now deceased) described how his hired caregiver abused him, including taking away the bell he used to summon help, ignoring him when he did ring and ridiculing his efforts to communicate as his...
posted on January 1, 2008 - 3:11pm
QUEST Vol. 15, No. 1
On two different occasions, when Aaron came home from MDA summer camp and asked what was new, I’ve blurted out the news that we were moving. Now, years later, it’s a joke, but back then Aaron swore he would never go to camp again.