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.

Simple ways to resist injury

posted on April 1, 2009 - 9:19am
QUEST Vol. 16, No. 2
It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For a caregiver, this kind of injury can be disastrous.
posted on April 1, 2009 - 7:08am
QUEST Vol. 16, No. 2
The Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials (which includes MDA, Families of SMA, Fight SMA and the SMA Foundation) has published a family-friendly version of a consensus statement on care of patients with SMA designed for physicians. The family guide for SMA provides recommendations for diagnosis, monitoring and treatment of the disease. This is...

Writing off caregiver expenses

posted on January 1, 2009 - 2:49pm
QUEST Vol. 16, No. 1
For people who find themselves spending significant sums for the services of caregivers/personal care assistants (PCAs), the good news is that some of those expenses may be recouped. The three primary areas to check out in this regard are child and dependent care expenses; unreimbursed business/employment expenses related to disability; and medical and dental expenses. Medical and dental expenses
posted on January 1, 2009 - 11:40am
QUEST Vol. 16, No. 1
Letters to Quest: Filmmaker seeks people with MC ** No help for single parents ** Choose to know genetic diagnosis ** PLS Awareness Month.
posted on November 1, 2008 - 10:38am
QUEST Vol. 15, No. 6
Featured Products: Hatchbacks footwear ** Chair yoga ** Eyegaze Edge ** SelfWipe ** Chrysler/Dodge minivan with conversion

Caring for your child starts with a healthy, happy you

posted on July 1, 2008 - 2:30pm
QUEST Vol. 15, No. 4
All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job. But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.
posted on May 1, 2008 - 9:26am
QUEST Vol. 15, No. 3
Having your child move out of your home is a rite of passage that announces to the world that he or she is ready to assume adult status. Able-bodied people usually take it for granted — you probably don’t.