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.

Sleep aids can help people with neuromuscular diseases and their caregivers get a good night's sleep

posted on September 1, 2006 - 3:07pm
QUEST Vol. 13, No. 5
When turning over in bed becomes difficult for a person with muscle weakness, usually two people suffer sleep deprivation — the “turnee” and the “turner,” or person who wakes up several times a night and helps with repositioning.
posted on May 1, 2006 - 2:52pm
QUEST Vol. 13, No. 3
Finding a sitter to care for the complex needs of a child with neuromuscular disease can be daunting. There are so many things to consider. Can the sitter lift my child? Perform important functions such as suctioning? What if something happens to the wheelchair? These and hundreds more “what ifs” can make getting a sitter seem too overwhelming to attempt.
posted on May 1, 2006 - 4:42am
QUEST Vol. 13, No. 3
The summer before our daughter Abby’s senior year in high school, my husband and I saw to it that she had all the appropriate activities: We visited colleges, caught up on medical appointments and made sure she prepared for her SATs. Interesting, but not exactly fun.
posted on November 1, 2005 - 9:50am
QUEST Vol. 12, No. 6
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 September 1, 2005 - 4:13pm
QUEST Vol. 12, No. 5
Those of us with muscular dystrophy would most like a cure, but in the meantime we'd also like governmental policies that support the highest quality of life possible. Instead, those of us with severe disabilities are frustrated by long-term care policies that favor institutionalization and deny us our full rights as citizens.
posted on November 1, 2004 - 10:05am
Albrecht as a senior She quit. It was 2 a.m., three weeks before the end of my freshman year at the University of Southern California in Los Angeles, and my personal care aide quit.
posted on November 1, 2004 - 9:49am
Roy Avery attends college, as does his mother/caregiver, Ann. College senior Roy Avery defines the difference between a parent and a caregiver this way: “A caregiver is someone who’s there to help you meet your needs.