Psychological Factors

According to experts, reframing your perspective on life can help conquer the anxieties or depression that can accompany living with neuromuscular disease

posted on January 5, 2015 - 9:21am
Even a quick search online will turn up all manner of white papers, analyses and studies that identify a higher risk of anxiety and depression among individuals living with chronic disease and physical disabilities — such as those associated with many types of neuromuscular disease.  

Combating chronic pain in people living with neuromuscular disease requires a multifaceted approach

posted on January 5, 2015 - 9:19am
Quest Winter 2015
It is not breaking news to people with neuromuscular disease that combating pain can be a substantial part of daily life. Unfortunately, chronic pain is a complex symptom to manage, and it may be far more pervasive in neuromuscular diseases than originally thought.  “When I started out, about 25 years ago now, there was nothing,” says Gregory Carter, a doctor who specializes in physical...

They say 'three's a crowd,' but what if the third person is your personal care assistant? A psychologist with SMA offers some dating strategies.

posted on October 30, 2014 - 9:11am
Quest Fall 2014
“Samantha” is a typical 30-something single female who has a successful, fulfilling career in investment banking. Samantha also enjoys an active social life, but when she looks around her and sees friends and peers in romantic relationships, she can’t help but desire the same for herself.

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

posted on November 19, 2013 - 11:05am
Quest Vol. 20, No. 4
After nine years of courtship, my partner Richard and I are discussing The Future. Children, marriage and home ownership are now notching out deeper spaces in our daily dialogue. Like many couples, we’re both scared of The Future. We’re concerned we won’t be fully equipped for what may come — those ripples that may make life a little more difficult. We’ve already experienced hardships that we’ve...
posted on April 9, 2012 - 11:15am
QUEST Vol. 19, No. 2
Ron Hayes didn't get a diagnosis of type 1 myotonic dystrophy (MMD1 or DM1) until he was 54, long after he had enjoyed academic and athletic success in high school and college, had earned a master's degree in public health, had married and had children, and had established himself in a career.

My mind, body and spirit become connected while dancing in my wheelchair

posted on January 1, 2012 - 12:07pm
QUEST Vol. 19, No. 1
Sixteen years ago, I learned I have limb-girdle muscular dystrophy (LGMD). My doctor explained that LGMD would take away my freedom to perform everyday functions such as walking, climbing, sitting, dancing and playing sports, and that it would eventually lead to extreme muscle wasting, daily pain and the need to use a wheelchair.

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).