palliative care

'Best practices' for treating various neuromuscular diseases are described in this third and final report on MDA's 2012 Clinical Conference

posted on April 19, 2012 - 6:00am
Several experts presented their views of "best practices" for care of people with neuromuscular disorders at MDA's 2012 Clinical Conference, held in Las Vegas March 4-7. Many questions remain about optimal care in these disorders, but it's clear that attention to heart and respiratory function are of paramount importance. This article looks at:

'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.

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...