Local funding source provides life-changing communication device for young boy
posted on January 1, 2009 - 3:39pm
In Pearland, Texas, Connie Guinn worked tirelessly for several months to gain access to a speech-generating device for her son Benjamin, 6, who has myotubular (centronuclear) myopathy.
With the exception of making noises and sounds, Benjamin was nonverbal. Guinn had tried to help her son learn sign language without much success.
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.
A 50-year-old with DMD escapes his nursing home via the Internet, thanks to a friend with SMA
posted on January 2, 2009 - 1:40pm
Dale Dulaney travels the World Wide Web via a mouth-controlled computer obtained by his friend Karen Wheeler, who also has a neuromuscular disease.
posted on September 1, 2005 - 4:02pm
Plenty of people believe their lives are captivating enough to be page turners, but transforming their impressions into book material can be a harrowing tale.
Although the prospect can be challenging, some people with neuromuscular diseases have pushed their experiences into publication. Writers who understand the stages of the process and the potential rewards have an advantage.
A college student with SMA wonders if newer technology can compensate for progressive muscle weakness
posted on March 31, 2010 - 11:05am
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...
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...
posted on February 1, 2001 - 3:10pm
"People always think speech therapy is related to speech and not to assistive technology or swallowing disorders," says Sharon Veis, a speech-language pathologist at the Voice, Speech and Language Service and Swallowing Center of Northwestern University in Chicago.
Veis says she doesn't mind being called a "speech therapist," but she and other speech professionals prefer the term used by the...
Don't let hand weakness interfere with using a tablet, e-reader or smartphone
posted on October 1, 2011 - 3:37pm
Technology has put the world into the palms of our hands through hand-held mobile devices such as the iPad, smartphone and e-reader. But when disability caused by muscle disease takes the “hand” out of “hand-held,” the tips and products detailed in this article may help.
A writer with muscle weakness borrows an iPad, and evaluates the pros and cons of this innovative technology
posted on October 1, 2010 - 4:55pm
The iPad is extremely thin and portable. But at 1.5 pounds, it was still a bit heavy for the author to hold easily.
My body may be confined mostly to one point in physical space, but my mind looks forward to its weekends in cyberspace
posted on March 31, 2011 - 11:45am
When I graduated from high school in 1984, there were no tearful farewells to friends and girlfriends while a New Wave soundtrack played in the background like some John Hughes movie.
Frankly, I was relieved to be free to start my writing career, and hopefully be heralded as the next William Gibson. When my science fiction failed to sell, I switched to writing thrillers and, consequently, hoped...
