Caregivers

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

A new federal program provides personal care aides for individuals with disabilities stranded in emergency shelters during a declared disaster

posted on August 13, 2012 - 6:00am
Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared?  Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional...

Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults

posted on October 1, 2011 - 3:32pm
QUEST Vol. 18, No. 4
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.” His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp. “We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...

The story you're about to read is true; the names have been changed to protect the guilty

posted on October 1, 2011 - 3:31pm
QUEST Vol. 18, No. 4
I’m fortunate in that many of my paid caregivers have been professional, reliable, respectful, pleasant and hard- working. Some have been with me for so long we think of them as family. Whether it was sharing my excitement over self-publishing a novel and moving into our new house, or helping me through the misery of my first months of diabetes and the nightmare of my mother’s breast cancer, they...

Survey confirms importance of family caregivers to adults with muscle disease

posted on October 1, 2011 - 10:37am
QUEST Vol. 18, No. 4
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...
posted on October 1, 2011 - 9:10am
QUEST Vol. 18, No. 4
Featured in this article: MDA website to honor caregivers * Get your flu shot * DECA and MDA celebrate their 30th anniversary

The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties

posted on January 1, 2011 - 1:31pm
QUEST Vol. 18, No. 1
Have you ever considered whether you eat to live or live to eat? Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.

A new national training model seeks to promote a highly qualified, stable workforce of professional caregivers

posted on October 25, 2010 - 4:24pm
A new training opportunity, the Direct Support Professional Registered Apprenticeship Program, will assist direct support professionals (such as hired caregivers and aides) in advancing in this essential field, say the program’s creators, the National Alliance for Direct Support Professionals (NADSP) and the American Network of Community Options and Resources (ANCOR).