posted on January 1, 2008 - 2:58pm
If you have a neuromuscular disease, is there anything more energy-draining than taking a shower or bath?
posted on September 1, 2007 - 11:54am
Three times I broke my right foot. Three times in the same place — directly below my big toe.
Strangers would ask why I was on crutches and wearing a cast, and I concocted elaborate stories to explain my temporary impairment.
“Skiing, over the holidays,” I’d say.
“Car accident. The vehicle was totaled so a broken foot is a minor inconvenience.”
“Dancing. My partner has two left feet.”
posted on November 1, 2008 - 10:21am
It was 5 o’clock on a weekday afternoon. I was sitting on the corner of Montrose, a five-lane thoroughfare through downtown Houston, and Sul Ross, a little cross street between West Alabama and Richmond. The class I was taking at the University of St. Thomas had ended for the day, and I was waiting for my faithfully late METRO bus.
posted on July 1, 2010 - 11:07am
After 25 years of marriage, my husband, the man who vowed to love me forever, dumped me on Fifth Avenue in New York.
I was riding in a manual wheelchair and Jim was pushing me. The light turned green and he shoved my chair into the crosswalk. In an instant, I tumbled headfirst into the intersection and landed in the street.
Before the light changed, several people picked me up and plopped me back...
A variety of devices make independence a little safer for people with disabilities
posted on July 1, 2010 - 11:31am
People with disabilities are more apt than the general population to encounter situations in which they need help, whether it’s emergency medical treatment or simply assistance getting from one location to another in the house. Fortunately, several devices and services are available to help out in these circumstances.
Cell phones
It’s logical that cell phones, given their presence nearly...
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) —...
When a 1,000-year storm hit Nashville, a writer with muscular dystrophy learned the truth of the adage ‘it’s all about neighbors helping neighbors’
posted on January 1, 2011 - 4:28pm
Devastating. Humbling. Unifying. Frightening.
Those are words that echoed through Nashville on the weekend of May 1, 2010, when the area was hit by a storm of Biblical proportions — a storm that would ultimately change the face of this beautiful city.
Although I’ve written in the past about disaster preparation for Quest readers, there is nothing like firsthand experience. Here, then, is my story...
posted on December 1, 1999 - 5:00pm
In the spring of 1997, Leslie Little was preparing to speak at a forum about home and fire safety for people with disabilities. She wanted to include a demonstration of a fire extinguisher that was adapted for use by people with disabilities.
Problem was, such a device didn't exist.
The biggest problem at an ER may not be the one you go in with, but the one you encounter there
posted on July 1, 2011 - 4:18pm
When a medical emergency strikes — and the patient is a person with a neuromuscular disease — it’s not just getting to the emergency room quickly that’s critical. It’s also critical to ensure the ER staff understands the patient’s special needs caused by muscle disease.
It's common, offenders often close to home
posted on May 1, 2008 - 9:36am
“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...
