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.

Hospice focuses on patient's wishes

posted on November 1, 2003 - 1:07pm
Smack in the middle of a frosty Michigan winter, Jackie Edwards Jr. was steaming like a hot summer day with anger. Edwards was fuming mad because he had learned that his mother had passed up tickets to a Metallica concert; she worried it would harm his health. Dawn Edwards feared that going to a raucous concert by the heavy metal band during cold weather would simply be too much for her son. At...
posted on July 1, 2003 - 12:49pm
Money can't buy love, but it can buy a van with a lift and a remodeled bathroom. Money is the root of all evil and of all wheelchair ramps. Money can't buy good health but poor health is easier to take when you've got money. So where is all the money? Alas, this story doesn't contain the complete answer. But it does offer a variety of ways and places to look for little pots of gold.
posted on February 1, 2002 - 4:42pm
A stress reliever Spencer Robedeaux, 12, seventh grade, Lancaster, Calif., Charcot-Marie-Tooth disease (CMT) Jenny Robedeaux wasn't sure she wanted to educate her son Spencer at home, but he insisted. Both mother and son have CMT, and Spencer also has diagnoses of attention deficit disorder (ADD), migraine headaches and depression.
posted on February 1, 2002 - 4:15pm
Unusual lives, unusual answers Kari Ginther, 19, college student, Raymond, Wash., Friedreich's ataxia (FA) Kari has experienced both homeschooling and homebound education. Her homebound experience was at the bottom of the scale, especially when compared to the two years she spent being homeschooled by her mother, Beth.

Before deciding on a homeschooled or homebound program for your child, educate yourself

posted on February 1, 2002 - 1:08pm
For many parents of children with neuromuscular diseases, a question arises at some point: Should I continue to send my child to school?

The other side of the mountain

posted on June 1, 2001 - 9:47pm
Macy's Thanksgiving Day Parade, 1997
posted on June 1, 1999 - 11:25am
Joan and Tim Lafferty receive a respite allotment from the Area Agency for Developmental Disabilities in Nashua, N.H., under the state Division of Health and Human Services. That allotment goes toward baby sitters and short-term respite. Through Medicaid, the couple has a home health aide two nights a week. "Having two sons with muscular dystrophy, after a while you get tired," Joan Lafferty...