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...

Disability advocates say many more preventative measures are needed

posted on July 1, 2010 - 3:21pm
QUEST Vol. 17, No. 3
In 2008, Kathleen Means, 50, was found dead from multiple stab wounds in her Rockford, Ill., apartment. Means, who had facioscapulohumeral muscular dystrophy (FSHD) and walked with difficulty, had lived alone since she retired in 2006. She was well-liked by her neighbors and former co-workers. Police could not discern a motive. One year later, they said they still had “few leads.”

A variety of devices make independence a little safer for people with disabilities

posted on July 1, 2010 - 11:31am
QUEST Vol. 17, No. 3
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...
posted on July 1, 2010 - 11:07am
QUEST Vol. 17, No. 3
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...
posted on June 30, 2010 - 4:41pm
QUEST Vol. 17, No. 3
If you are pregnant or plan to become pregnant, discuss with your physician any medications you are taking. In all cases where medication is required, the risk to the fetus must be weighed against the health of the mother.
posted on June 30, 2010 - 4:33pm
QUEST Vol. 17, No. 3
When Emma Ciafaloni was preparing to become a neuromuscular disease specialist in the 1990s, and even when she directed the MDA neuromuscular disease clinic at Duke University in the early 2000s, she was struck by the lack of information she could offer patients who wanted to become pregnant.

Tips for achieving quality of life and independence by living with paid personal attendants and their familes

posted on December 31, 2009 - 1:19am
QUEST Vol. 17, No. 1
A wise friend at my Quaker meeting once told me, “It’s a ministry to offer help, but it’s also a ministry to accept help.” Let’s just say that my life situation has given me quite a lot of opportunities to exercise the ministry of accepting help! I was born with type 2 spinal muscular atrophy and left home for graduate school at age 25 never having had anyone except my mother help me with my...
posted on October 1, 2009 - 3:29pm
QUEST Vol. 16, No. 4
During the holidays, eating is as much about friends and family as it is about food. But when muscle weakness makes it difficult or impossible to eat by mouth, some shy away from coming to the table. Nonsense, say those who’ve learned how to work around — or ignore — the social discomfort. Life’s too short to miss out on the fun. Below are adapted dining tips from therapists and people with weak...