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 July 1, 2009 - 3:17pm
QUEST Vol. 16, No. 3
The 911 call placed, you feel like you're dreaming, You’re not, from afar you can hear sirens screaming; The ambulance ride, your body’s not moving, They wonder aloud, whoa, she's not improving; Respiratory muscles won’t respond to a breath, You know once again that you’re so close to death; Whizzed in on a gurney, it’s all moving fast, What? You’re parked in a hallway, suddenly bypassed;...

Individuals and families struggle to manage the periodic paralyses, a group of diseases that’s too often misunderstood by teachers, employers and even health professionals.

posted on July 1, 2009 - 3:09pm
QUEST Vol. 16, No. 3
People who know me know I lead an extremely active life,” says Linda Feld of Longwood, Fla. “People don’t see me as somebody on a scooter. I’m Linda, and I do all these things every day, and they know me for me. I tell people that periodic paralysis has become my friend. It’s along for the ride, but it’s not going to rule my life.”
posted on July 1, 2009 - 2:14pm
QUEST Vol. 16, No. 3
Letters to Quest: Myasthenia gravis ** Paid family caregiver ** Exercise ** Self-esteem ** Wheelchair fashion.

'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease

posted on July 1, 2009 - 11:06am
QUEST Vol. 16, No. 3
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.
posted on April 1, 2009 - 4:34pm
QUEST Vol. 16, No. 2
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 April 1, 2009 - 2:00pm
QUEST Vol. 16, No. 2
Q: What is exercise? Why do it?

As muscle weakness progresses, people give different answers

posted on April 1, 2009 - 8:07am
QUEST Vol. 16, No. 2
In this age of obsession about body image, when someone asks me if I want a piece of strawberry pie for dessert, I’m apt to decline. “No thanks. I need to maintain my girlish figure.” My playful reply is designed to conceal the fact that I’m actually assessing my ability, as a 40-pound skinny mini with spinal muscular atrophy type 2 (SMA2), to eat the pie.