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.

Inspired by the one-armed drummer for Def Leppard, a musician with FSHD figured out a way to return to drumming

posted on July 1, 2012 - 12:00pm
QUEST Vol. 19, No. 3
John DeGeorge, 50, of Los Angeles, works as an IT (information technology) compliance consultant to make a living, but he lives to play the drums. “I think I was born with an interest in making music, or making noise,” he says. Being the son of a former drummer with the Glenn Miller Orchestra, such a passion for music must be in the genes.

A challenging and multifaceted disease

posted on April 9, 2012 - 12:05pm
QUEST Vol. 19, No. 2
As far back as Carla Licon can remember, her mother had difficulty opening jars and walking long distances. Licon’s mother wore ankle braces, and she also had an unusual symptom known as "myotonia," the inability to relax muscles, such as a clenched hand, at will. Licon, who is 31 and lives in Victoria, Texas, thinks these symptoms started when her mother was in her 20s. Later, her mother’s...

Iconoclast and author Mike Murphy wants a revolution in the way characters with disabilities are portrayed

posted on April 9, 2012 - 12:03pm
QUEST Vol. 19, No. 2
I love movies. Always have, always will. I pumped my fist in the air (metaphorically) when Captain America beat the snot out of Red Skull, held my breath (also, metaphorically) while Frodo and Sam scaled Mount Doom, and teared up when the starship Enterprise first appeared in the latest Star Trek movie.
posted on April 9, 2012 - 12:00pm
QUEST Vol. 19, No. 2
Thankful for kindness I am a 28-year-old poet with spinal muscular atrophy. My symptoms began showing themselves before I ever was able to take a free step and kept me from ever doing so. Through my life I have remained very physically and mentally active, completing coursework toward a master’s degree in sports psychology while working with the Eastern Washington University men’s...
posted on April 9, 2012 - 12:00pm
QUEST Vol. 19, No. 2
Note: Unless other contact information is given, books mentioned in Quest can be ordered through local bookstores or online through retailers such as Amazon.com or BN.com. Prices are subject to change and so have not been quoted here. Reviewed books are not available through MDA.

Stacy Zoern liked the wheelchair-accessible Kenguru electric car from Hungary, so she started a Texas company to produce them

posted on February 22, 2012 - 3:23pm
Stacy Zoern has entered yet a new phase in her already eventful life — this time at 25 miles per hour.

Having a disability doesn’t mean you can’t find the love of your life; young adults with neuromuscular disease share their stories and advice

posted on February 14, 2012 - 11:54am
If you have limited movement, how do you make the first move on a date? Is it OK to bring a personal care attendant on a date? At what point would you let a "significant other" provide personal care for you?