Personal Stories

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

Butting in with a view on employment

posted on January 5, 2015 - 9:23am
Quest Winter 2015
Considering the title of this column, From Where I Sit, I’m surprised more people have not written about butts. After all, for those of us wheeling around at a seated height — I live with type 2 spinal muscular atrophy (SMA) — other people’s butts are often what we see from where we sit. 

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...

News and updates from the MDA community

posted on January 5, 2015 - 9:05am
Quest Winter 2015
Shining STAR: The MD STARnet project expands to learn more about neuromuscular disease

Feedback from Quest readers and the MDA community

posted on January 5, 2015 - 9:03am
Quest Winter 2015
Letters to the Editor: Hitting home

Dedicated MDA family caregivers share best practices for supporting loved ones and themselves

posted on October 30, 2014 - 9:19am
Quest Fall 2014
“If I was down, who was going to take care of him?” 

Women with neuromuscular disorders need the same gynecologic care as other women — and sometimes more

posted on October 30, 2014 - 9:17am
Quest Fall 2014
Katrina Gossett knows the importance of gynecologic (pelvic) exams, but she is not eager to repeat her last exam experience. Katrina Gossett, 29, has only had one gynecologic (pelvic) exam in her life, and it’s not an experience she’s eager to repeat.