posted on April 1, 2009 - 10:42am
During cool spring and fall weather, friends and neighbors gather around Tom’s fire pit down by his lake dock almost every Friday night. Some arrive by car, some by boat and some, meaning me, by wheelchair.
posted on April 1, 2009 - 4:34pm
While I lay on a plinth, a Swiss doctor gestured that I should lift up my left leg. He bear-hugged my leg and resisted its elevation with his full body weight. He grunted as he fought my movement.
He wasn’t the only person prodding and inspecting me. A team of doctors, biokineticists and physiotherapists surrounded me. It was like the United Nations of medics. Besides the Swiss doctor, there was...
Online Worlds Provide Places to Escape
posted on September 1, 2008 - 9:31am
Connie Davis is 43 years old, has myasthenia gravis (MG) and lives in Kirkwood, N.Y. Evan Fries, who has Duchenne muscular dystrophy (DMD), is 24 and hails from Charlotte, N.C. And Samuel Kahn is 25; he has Emery-Dreifuss muscular dystrophy (EDMD) and resides in San Diego, Calif.
posted on November 1, 2006 - 11:53am
Third-grader Wesley McHugh couldn’t wait to see the new playground at his school in Mandeville, La., near New Orleans. His excitement quickly changed to disappointment when his electric wheelchair was unable to maneuver over the bark-covered surface. During recess, he sat on the sidelines and watched his classmates play.
Wesley, who has nemaline myopathy, graciously accepted another barrier in...
A student with CMT and teammates win awards for easy-access wheelchair backpack holder
posted on July 9, 2009 - 5:22pm
When a group of Wethersfield (Conn.) High School students was brainstorming ideas for a science project, they looked no further than team member Griffin Latulippe for an idea that vaulted them into the international spotlight.
posted on March 1, 2005 - 11:20am
Miranda Jackson’s first signs of muscle weakness came in first grade. A bright youngster with an engaging smile, she struggled not only with lack of coordination from myotonic muscular dystrophy (MMD), but also with pain from a form of juvenile arthritis and depression from bipolar disorder.
Chester Kahapea, once the jubilant face of Hawaii’s statehood, now adjusts to life with ALS
posted on September 7, 2009 - 9:00pm
posted on November 1, 2005 - 9:50am
It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”).
Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting...
posted on March 1, 2007 - 1:07pm
On a fall day in 2000, I, an adventure-seeking country girl, moved from rural Pennsylvania to the Big Apple. Bright-eyed and fun-loving, having spent all of my 22 years in a wheelchair, I’d tasted independence in college and was oh-so-eager to spread my wings and fly to the unfamiliar, inviting New York City.
posted on December 31, 2009 - 1:19am
According to the National Family Caregivers Association, more than 50 million Americans care for loved ones with a chronic illness, disability or old age.
Caregivers assist people with neuromuscular disease in accomplishing many tasks of daily living. From eating to grooming, dressing to transferring, traveling to sleeping, and more, caregivers truly make life fully possible.
