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 April 21, 2015 - 9:12am
Quest Spring 2015
There sure is a lot of happiness going around — videos going viral with giggling babies, happy dogs and even happy elephants. For the past year we've watched montages of people joyfully taking to the streets dancing to the infamous Pharrell Williams’ hit song, “Happy.”

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
Quest Winter 2015
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.