caregiving parents

A co-op model of care for adult children

posted on December 31, 2009 - 1:00am
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....


posted on December 1, 2002 - 12:34pm
Parents of kids with neuromuscular diseases may be preparing to deal with their children’s progressive physical limitations, only to find they also have to cope with cognitive deficits. In other cases, cognitive difficulties are the first symptoms of the child’s neuromuscular disease. In either case, when a neuromuscular disease affects the brain, a new level of care and attention is required...