Links & Resources
Books & Literature
- Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography
(MDA, Quest Magazine, 2010) - Why We Need Books About People Like Me
Article by Jacob Gapko (MDA, Quest Magazine, 2010)
DMD Bloggers
- JediCharles.com
Charles D. Rhodes - Life of John
John Herrmann - Living With DMD – Not The End
Chris Webb - Mark in Montana
Mark Boatman aka Nodakwheeler - My Unfinished Story
Tom Mecke - Stephen King's Odyssey
Not the Author
Heart Health
- Cardiomyopathy in Muscular Dystrophy
(MDA, Conference Report, 2003) - DMD and Unexplained Chest Pain
(MDA, Ask the Experts, 1998) - MEDLINEplus Medical Encyclopedia: Cardiomyopathy
- The Heart is a Muscle, Too (Part 1)
(MDA, Quest Magazine, 1999) - The Heart is a Muscle, Too (Part 2)
(MDA, Quest Magazine, 1999) - Uncovering Causes of Cardiac Problems in MDs
(MDA, Quest Magazine, 2003)
Non-Invasive Ventilation
- Doctor John R. Bach, M.D.
The official web page of John R. Bach, a specialist in rehab medicine with an interest in Neuromuscular diseases like DMD. - Non Invasive Vent Users
Jeff Gray’s personal web site about noninvasive ventilation. - Noninvasive Ventilation Can Prolonged Life in SMA and DMD, Physician Says
(MDA, Quest Magazine, 2002) - Noninvasive Ventilation Users Group
Online mailing list about Noninvasive Ventilation for users and those with an interest. - Prolongation of Life By Noninvasive Ventilation and Mechanically Assisted Coughing
(DoctorBach.com, 2002)
Other Articles
- Medicine With A Personal Touch
(MDA, Quest Magazine, 1995)
Respiratory (General)
- A Breath of Fresh Air: Respiratory Care Can Improve Quality of Life
(MDA, Quest Magazine, 1998) - Breathe Easy: Options for Respiratory Care
(MDA, Quest Magazine, 1998) - Breathe Easy: Respiratory Care in Duchenne Muscular Dystrophy
(MDA Publications, 2009) - Facts About Duchenne and Becker Muscular Dystrophies — Respiratory Function (PDF)
On page 7. (MDA Publications, 2000) - International Ventilator Users Network (IVUN)
Resource for all ventilator users. - Journey of Love — Preserving Respiratory Function
(MDA Publications, 1998) - Respiratory Care of the Patient with Duchenne Muscular Dystrophy (PDF)
American Thoracic Society Consensus Statement - Vent Users' Support Page
Jim Lubin’s ventilation resource web page. - VENT-USERS-LIST Discussion Group
Online mailing list and support group for all ventilator users.
