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.

Read a chapter from Incight's college guide for students with disabilities

posted on March 31, 2010 - 10:57am
QUEST Vol. 17, No. 2
Incight is a nonprofit agency dedicated to helping students with disabilties by providing scholarships, assistance finding mentors and internships, and other resources. Click on the title below to read the "Finding Care Givers" chapter from Incight's guide book "Getting Ready for Life at College."  (The full guide can be ordered through Incight.)  Incight College Guide: Finding Care...

Even in tough times, this self-directed service option is giving Medicaid consumers more flexibility and saving states money

posted on March 12, 2010 - 2:30pm
Cash and Counseling, a government program that gives Medicaid recipients in 15 states direct control over their personal-care spending, has been so successful that a majority of states are now adopting it or similar programs. A new report tells why and how.

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...

A co-op model of care for adult children

posted on December 31, 2009 - 1:00am
QUEST Vol. 17, No. 1
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s. Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....

With help from his wife and some simple-but-ingenious adaptations, this angler with BMD still reels ‘em in

Thanks to a little help from a tablecloth, a scissor jack and his wife Mary, Curt Sweely is one heck of a fisherman. Of course, Sweely has been one of the fishing-est fishermen on East Coast lakes for decades, with a boatload of trophies and titles to show for it. The only thing that’s changed is his approach.

New guidelines for physicians caring for ALS patients released by the American Academy of Neurology

posted on October 13, 2009 - 9:55am
The American Academy of Neurology (AAN) released its new guidelines on patient care in amyotrophic lateral sclerosis (ALS) on Oct. 13, 2009. Several MDA-affiliated physicians were involved in their development.

A new National Institutes of Health questionnaire seeks public input to improve the agency’s information services

posted on October 10, 2009 - 10:55am
Important questions for Americans: What health care issues are important to you? Where do you get most of your health care information? If a loved one were sick with cancer or Alzheimer’s disease, where would you go for information? The National Institutes of Health (NIH) wants to know. A new NIH program seeks to obtain information from a wide cross-section of America that the agency hopes will...