Sometimes conquering fear of the uncertain and finding a world of possibilities is just a train ride away

posted on October 8, 2015 - 9:45am
Have you ever felt trapped, isolated or suffocated by transportation-related issues? I’m sure those of you who use a wheelchair, like I do — I have spinal muscular atrophy — or rely on some other form of mobility aid have felt these things a time or two. I know I have. But in the past couple of years, I’ve been determined to face my greatest fear, which includes...

Safety tips for living alone with a disability

posted on September 1, 2008 - 12:40pm
QUEST Vol. 15, No. 5
Reason number three: You can decorate your place with an array of wheelchairs, walkers and standing frames. Reason number two: Your roommate doesn’t leave her dishes for your caregiver to wash. And, the number one reason people with disabilities want to live alone: You can roll around the house naked and nobody says a word.

It's common, offenders often close to home

posted on May 1, 2008 - 9:36am
QUEST Vol. 15, No. 3
“Yesterday I was battered,” begins an entry in the blog of a man with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease). In a series of such entries over a period of months, the writer (now deceased) described how his hired caregiver abused him, including taking away the bell he used to summon help, ignoring him when he did ring and ridiculing his efforts to communicate as his...
posted on May 1, 2008 - 9:23am
QUEST Vol. 15, No. 3
When you live at home, your parents tend to do everything for you. Food just magically appears in the refrigerator, electricity and water grow on trees and your service dog’s piles in the backyard disappear into thin air.

In people with muscle diseases, testing for sleep-breathing problems is tricky, but worth it

posted on March 1, 2008 - 3:29pm
QUEST Vol. 15, No. 2
Do you suffer from sleep disturbances — snoring, choking or gasping, or restless tossing and turning? Do you wake up in a sweat in the middle of the night, or arise in the morning feeling fatigued, or with headaches, sore throat or dry mouth? Do you experience memory and concentration problems, or find you’re excessively sleepy during the day, falling asleep when you normally shouldn’t, such as...
posted on January 1, 2008 - 2:58pm
QUEST Vol. 15, No. 1
If you have a neuromuscular disease, is there anything more energy-draining than taking a shower or bath?

Wheelchair disasters offer simple safety lessons

posted on January 1, 2008 - 2:49pm
QUEST Vol. 15, No. 1
All wheelchair drivers have run over some toes, bashed into walls and unintentionally moved large pieces of furniture. But the drivers profiled in this article have gone beyond mishaps and experienced true wheelchair disasters, or near-disasters. Their pain can be your gain, if their hard-won yet simple wisdom helps prevent these calamities from happening to you. Hitchin’ a ride
posted on January 1, 2008 - 10:11am
QUEST Vol. 15, No. 1
In this issue: A great cane ... and walker ** Loves digital Quest ** Living with SMA ** Glad to see McArdle disease.