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 October 1, 2010 - 11:15am
QUEST Vol. 17, No. 4
Featured in this issue: Books by people affected by neuromuscular diseases include For the Love of Pete: The Story of Our ALS Journey by Marlene Hoyland Zaleski, whose husband died of ALS; The Samurai and the Mujahideen, a story set during the Soviet-Afghanistan war by Ben Dowling, who has Friedreich's ataxia; Shadows on the Ceiling: A Memoir of Disability and Abuse, a tale of a woman's...

A new documentary recounts Rob Roozeboom’s struggles with limb-girdle muscular dystrophy and his founding of Rise Ministries

posted on March 16, 2010 - 10:32am
In the documentary “Waiting to Rise,” Rob Roozeboom’s small son asks him, “Dad, why do you walk like that?” “Because I have muscular dystrophy, son,” he answers. The boy is unconvinced. “Penguins walk like that,” he observes, “but they don’t have muscular dystrophy.” At this stage of his life, Roozeboom, 33, can laugh uproariously at that assessment. But as a boy himself, and later as a teen, his...

A new National Institutes of Health questionnaire seeks public input to improve the agency’s information services

posted on October 10, 2009 - 10:55am
Important questions for Americans: What health care issues are important to you? Where do you get most of your health care information? If a loved one were sick with cancer or Alzheimer’s disease, where would you go for information? The National Institutes of Health (NIH) wants to know. A new NIH program seeks to obtain information from a wide cross-section of America that the agency hopes will...
posted on October 1, 2009 - 3:26pm
QUEST Vol. 16, No. 4
When I was 12 years old, I received a diagnosis of Friedreich’s ataxia (FA), a rare neuromuscular disease. That’s also the year I met Ms. Wheelchair Maryland and started to dream of entering the Ms. Wheelchair pageant. But that goal quickly was overshadowed by the usual adolescent things.
posted on October 1, 2009 - 3:10pm
QUEST Vol. 16, No. 4
Q: What could possibly be bad about children with neuromuscular diseases living longer life spans than has been common in the past? A: As these children become adolescents and then adults, they encounter a medical system and society that are not prepared to accommodate them.
posted on October 1, 2009 - 11:20am
QUEST Vol. 16, No. 4
Letters to Quest: A former MDA summer camper shares her memories ** Readers respond to articles about exercise, public transit, travel problems, caring touch ** Selfless fire fighters help a Virginia man ** A reader asks about overusing hand muscles while playing video games, and MDA Medical Director Valerie Cwik responds.

A caring touch can work wonders

posted on July 1, 2009 - 3:46pm
QUEST Vol. 16, No. 3
I guess I’d give anything to get physical affection,” says Carol*, a former gymnast who lives in Nevada. She has had slowly progressive ALS (amyotrophic lateral sclerosis) over roughly two decades, but early in the disease her husband and caregiver became distant — “figured I’d die in a few years,” she says.