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...
posted on October 1, 2010 - 11:15am
QUEST Vol. 17, No. 4
Featured in this issue: Books by people affected by neuromuscular diseases include For the Love of Pete: The Story of Our ALS Journey by Marlene Hoyland Zaleski, whose husband died of ALS; The Samurai and the Mujahideen, a story set during the Soviet-Afghanistan war by Ben Dowling, who has Friedreich's ataxia; Shadows on the Ceiling: A Memoir of Disability and Abuse, a tale of a woman's...

Alex McArthur, an advocate and scholar who has limb-girdle MD, wants to use her Ms. Wheelchair role to help bring communities together

posted on September 23, 2010 - 10:30am
McArthur was crowned Ms. Wheelchair American at the pageant in Grand Rapids, Mich., this August. (Glen Lipton Photography)

Events, awards and campaigns are planned to recognize and raise the status of professional caregivers during Direct Support Professionals Week

posted on September 13, 2010 - 3:11pm
Do you know an outstanding professional caregiver?  This would be a good week to show some special appreciation for the important work he or she does. Spurred on by organizations that represent professional caregivers, the United States Senate has declared the week starting Sept. 12, 2010, to be the third annual National Direct Support Professionals Recognition Week. Events are planned...

From an evacuation to a power outage to a simple family emergency — do you have a plan that accommodates your special needs?

posted on September 3, 2010 - 10:43am
As storm season whips up, it’s wise to take stock of your emergency plan, especially if your mobility is limited. Two veterans of weather emergencies — Barbara Twardowski of Mandeville, La. (who has Charcot-Marie-Tooth disease and uses a power chair) and Shelley Obrand of Davie, Fla. (who has a nonspecific form of muscular dystrophy and uses a power chair and respiratory assistance device) —...

Sidelined by bone cancer, limb-girdle MD and depression, Steve Williams found a way to get back out on the open road

posted on July 20, 2010 - 3:55pm
The “passenger” in Steve Williams’ motorcycle sidecar doesn’t say much, but if it could talk, it probably would have plenty of stories to tell.

Victor Pineda travels the world promoting 'inclusive societies' for young people with disabilities (video)

posted on July 13, 2010 - 5:36pm
Life has been a whirlwind of activity for Victor Pineda lately.  The 31-year-old bachelor got married the first week in July.  He earns his Ph.D. in government planning around the first of August. But these momentous events are almost insignificant compared to the rest of his typical schedule. In 2005 Pineda created the Victor Pineda Foundation (VPF) and today it commands most of his...

A sampler of products to make your ride safer and easier

posted on July 1, 2010 - 5:34pm
QUEST Vol. 17, No. 3
This two-minute slideshow contains 24 accessories that could make your life safer and easier while in your wheelchair or scooter. The presentation is just a sampler of the many products available online. At any point, you can pause the show to study the product or read the name or web address. The items featured in the slideshow are displayed with website addresses, also listed below. If you see...