Independence

For many individuals with neuromuscular diseases, finding a meaningful career can make for a richer, more independent life

posted on October 8, 2015 - 9:47am
Going from being a high school or college student to an independent, working adult can be challenging for almost anyone. But for individuals who live with neuromuscular diseases, the transition into the workforce can be especially overwhelming.  But young adults in the MDA community who have successfully made this employment leap agree that the rewards of meaningful work are worth the...

Ryan Levinson struggles just to put on a hat due to FSHD — yet still manages to rescue people on the high seas

posted on May 19, 2010 - 5:39pm
“Even though I struggle to put a hat on my head or walk up a staircase, I can still operate in 40- to 60-foot waves and provide a service that may save someone’s life.” Ryan Levinson, 38, lives life to the fullest, and he’s not going to let a disease like facioscapulohumeral muscular dystrophy (FSH) deter him.

Tom Mecke of San Antonio, who has Duchenne muscular dystrophy, has spent five decades — and counting — following his dreams

posted on May 12, 2010 - 3:35pm
January 17 was a particularly special day for Tom Mecke. It was his 50th birthday, and he had beaten a pretty long set of odds to get there. Mecke, a San Antonio, Texas, resident all his life, has Duchenne muscular dystrophy (DMD). He and his parents got the news that he has the disease when he was 6 years old. They also were told he’d probably die before he turned 20.

Cheap sunglasses and low-tech components allow Tony Quan, who has ALS, to draw again using his eyes; plans and software are free online

posted on April 2, 2010 - 2:56pm
A Los Angeles graffiti artist with ALS was the inspiration behind a low-cost, eye-controlled drawing device called the Eyewriter.  For about $50 in simple components, Tony Quan (aka “Tempt 1”) has been able to resume creating his artwork for the first time in more than six years. 'Hackers and artists' join forces Quan learned he had ALS in 2003. A well-known graffiti-style artist and social...

Rental solutions for vacationing with a wheelchair (includes video and slideshow)

posted on April 1, 2010 - 4:08pm
QUEST Vol. 17, No. 2
When considering your summer vacation options, wheelchair accessibility and transportation can be limiting factors. But renting specialized mobility equipment just might give you access to vistas you don’t normally see. And isn’t that what vacations are all about? Hit the road, Jack
posted on March 31, 2010 - 1:47pm
QUEST Vol. 17, No. 2
Take a quick peek at the products below -- from a stuffed bear to baby wear, to a shoelace-securing system and easy on/off boxer shorts. You just may find something that will make things easier, increase your independence or simply brighten your day.  

A college student with SMA wonders if newer technology can compensate for progressive muscle weakness

posted on March 31, 2010 - 11:05am
QUEST Vol. 17, No. 2
Going back to school is hard, especially when you’re 51 years old and going back for your bachelor’s degree. I grew up with type 3 spinal muscular atrophy, so I understand and can deal with my disability. But every year I get weaker, so I continue to need to find ways to compensate and — in the case of going back to school — to figure out such problems as handling my textbooks, taking notes and...

Read a chapter from Incight's college guide for students with disabilities

posted on March 31, 2010 - 10:57am
QUEST Vol. 17, No. 2
Incight is a nonprofit agency dedicated to helping students with disabilties by providing scholarships, assistance finding mentors and internships, and other resources. Click on the title below to read the "Finding Care Givers" chapter from Incight's guide book "Getting Ready for Life at College."  (The full guide can be ordered through Incight.)  Incight College Guide: Finding Care...