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.

Chester Kahapea, once the jubilant face of Hawaii’s statehood, now adjusts to life with ALS

posted on September 7, 2009 - 9:00pm

An Aug. 15-16 conference for families affected by CMD can be watched online

posted on August 13, 2009 - 9:00pm
A conference for families affected by congenital muscular dystrophy (CMD) is taking place Saturday and Sunday, Aug. 15-16, 2009, at Children's Hospital of Philadelphia, under the sponsorship of Cure CMD. The conference begins at 8:30 a.m. Eastern time and will be available through the Internet.

Houston conference planned for families affected by centronuclear myopathies; includes live Webcast

posted on July 13, 2009 - 9:00pm
Families affected by muscle diseases known as centronuclear myopathies, including myotubular myopathy, may be interested in attending a conference in Houston July 24-26, either in person or online.

A caring touch can work wonders

posted on July 1, 2009 - 3:46pm
QUEST Vol. 16, No. 3
I guess I’d give anything to get physical affection,” says Carol*, a former gymnast who lives in Nevada. She has had slowly progressive ALS (amyotrophic lateral sclerosis) over roughly two decades, but early in the disease her husband and caregiver became distant — “figured I’d die in a few years,” she says.
posted on July 1, 2009 - 2:14pm
QUEST Vol. 16, No. 3
Letters to Quest: Myasthenia gravis ** Paid family caregiver ** Exercise ** Self-esteem ** Wheelchair fashion.

'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease

posted on July 1, 2009 - 11:06am
QUEST Vol. 16, No. 3
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.
posted on April 1, 2009 - 4:13pm
QUEST Vol. 16, No. 2
Letters to Quest: Camp is so important ** Moms on Wheels ** All camps not the same ** No guarantees (life expectancy) ** FMLA and sibling caregivers ** Pay for family caregivers.