parenting

For one mother living with Charcot-Marie-Tooth disease, daily perseverance starts with redefining 'normal'

posted on January 5, 2015 - 9:11am
I measure and compare myself to other “normal” mothers out there — those who are able-bodied. It’s hard not to, especially when it comes to doing everyday things with my son.

Balancing parenthood and neuromuscular disease is not just possible — many dedicated moms and dads who live that reality every day say having kids is the best decision they've ever made

posted on July 7, 2014 - 9:23am
Quest Summer 2014
Matthew Martin and Amanda Hall have more than a few things in common. They’re roughly the same age — Martin is 28; Hall is 30. They both call the state of Texas home — Martin in Rowlett; Hall in Glenrose. Then there’s the fact that each lives with a neuromuscular disease — Martin was diagnosed with Duchenne muscular dystrophy (DMD) at the age of 8; Hall with...
posted on October 1, 2009 - 11:20am
QUEST Vol. 16, No. 4
Letters to Quest: A former MDA summer camper shares her memories ** Readers respond to articles about exercise, public transit, travel problems, caring touch ** Selfless fire fighters help a Virginia man ** A reader asks about overusing hand muscles while playing video games, and MDA Medical Director Valerie Cwik responds.

'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 January 1, 2008 - 3:01pm
QUEST Vol. 15, No. 1
Find resources on: applying for Social Security benefits, Medicare premiums, post-high school transition, health records maintenance, disability etiquette, home ownership, and other topics of living with disability.
posted on September 1, 2007 - 9:54am
QUEST Vol. 14, No. 5
I believe in miracles. I look at her face every day. Her name is Grace...and she is our miracle. Living life from a wheelchair, and knowing each day the physical limitations I have, it was no surprise when doctors confirmed that for me to go through pregnancy and a natural childbirth would be dangerous. It was no surprise, but it was devastating to face the reality that I’d never experience this...
posted on March 1, 2006 - 10:12am
QUEST Vol. 13, No. 2
On Nov. 4, 1976, we sadly checked our daughter Abby out of the hospital a day before her first birthday. With a confirmed diagnosis of spinal muscular atrophy (SMA) and the prediction that she might not have a second birthday and quite likely wouldn’t have a third, the last thing we wanted to do was to spend what might be her only birthday in the hospital.

Parents often struggle to find the right way to help their shy child with a neuromuscular disease

posted on August 1, 2002 - 4:59pm
James — a hypothetical boy — is 14 and has Duchenne muscular dystrophy (DMD). James has always been a little reserved around strangers, but over the past several years — especially since he lost the ability to feed himself — he has become increasingly resistant about going out in public, to the point that his mother practically has to beg him to go to a movie. He refuses to attend MDA summer camp...