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...

A psychologist who ran MDA parent support groups offers guidance on ways to handle misbehavior

posted on October 1, 2011 - 8:30am
QUEST Vol. 18, No. 4
The most important element of disciplining a child is to have your anger under control when doing the disciplining. When your anger is under control, you earn respect from your child, the discipline will be effective, and you are modeling how children can handle their own anger in a healthy manner. Your anger is under control when:

A genetic counseling student is exploring the role of family functioning in promoting the adaptation of siblings of children with DMD

posted on June 22, 2011 - 3:08pm
Belen Pappa, a graduate student in genetic counseling, is seeking participants for a survey-based study about psychosocial functioning in families in which a child has Duchenne muscular dystrophy (DMD).

Researchers at the University of Michigan are studying why some people identify themselves as disabled and others do not

posted on June 1, 2011 - 4:30pm
Researchers at the Psychology of Disability Lab at the University of Michigan in Ann Arbor are exploring the social identity of people with disabilities through a short, anonymous, Web-based questionnaire. The lab's Disability Identity Project is being headed by principal investigator Adena Rottenstein, a doctoral candidate in psychology. The study closes the week of Aug. 22, 2011.

Can love, courage and modern medical technology prevent muscular dystrophy from being passed on to the next generation?

posted on March 31, 2011 - 12:01pm
QUEST Vol. 18, No. 2
It was the worst Monday morning of our lives — and Mondays are universally bad. My wife, Monique, and I woke up to a snow lockdown in London. The snow had started gently enough in the evening, but now on this January morning it was a white strait jacket. We could hardly move, but we desperately needed to get to Nottingham at all costs. Our potential future children — two fertilized...

Researchers are surveying people with a congenital form of muscular dystrophy or myopathy about their perceptions of their quality of life and autonomy

posted on January 26, 2011 - 2:39pm
Researchers at the University of Michigan are seeking 30 young adults, ages 18-29, who have had symptoms of certain forms of muscular dystrophy or myopathy since birth, to complete an online survey that asks about their perceived quality of life and level of independence. The study also is recruiting 30 adults with no neuromuscular disease. Results will be used to identify ways that counselors...
posted on January 1, 2011 - 4:54pm
QUEST Vol. 18, No. 1
Diagnosed as bipolar and autistic while still a child, Bridget Morris grew up with a host of developmental problems. That’s why, when she was tested for Friedreich’s ataxia (FA) at age 10, her mother, a nurse, was “very cavalier.” Bridget had muscle tightness, weakness and scoliosis (a curved spine), her handwriting was worsening, and she had begun to fall and walk with a “wide” gait to steady...

A long-term caregiver reveals her secret for survival

posted on October 1, 2010 - 1:50pm
QUEST Vol. 17, No. 4
While cleaning a messy drawer, I began to smile and then chuckle at the foolish objects I have kept. When will I ever need a used twisty tie or a bent nail? And then there are the keys that don’t seem to fit anything. Am I just deceiving myself in believing these should be saved? Don’t laugh at me, laugh with me. I believe laughter can change the world, one giggle at a time. Come on, give it a...