Spinal Muscular Atrophy(SMA) and Muscular Dystrophy (MD): The Ultimate Chronic Illness Resource Directory ... maintained by Pamela Rice Hahn

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The companion Web site for that book is at:
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Rhymes and Reasons
Read an excerpt from Pamela Rice Hahn's book, subtitled Thoughts on Coping with Chronic Illness, CFS, FM, MCS, Sex, and Other Stuff.

Special thanks goes to RJ Corradino for his help with this section.
*RJ passed away in March of 2000 due to complications from his illness. His spirit lives on through his poetry, but there's not a day that goes by that I don't miss him. /prh

Muscular Dystrophy Muscular Dystrophy isn't just one disease. Actually, muscular dystrophy is a term that refers to an assortment of hereditary muscle-destroying conditions. These can vary enormously. Some people with MD are very ambulatory, while others need to use wheelchairs. The speed of MD's progression, age of onset, and average life span also vary. I have Spinal Muscular Atrophy, which is a form of MD. While most of this page is related specifically to SMA, I feel that all of the information here will be can be applied to other forms of MD as well. I hope to include more links about Duchenne MD (the most common) and some other forms in the near future. -RJ Corradino*
-	Muscular Dystrophy Association The MDA site has plenty of information, including a Facts about MD. There is also a very extensive ask the experts section (I recommend pressing edit / find on your browser to navigate the large pages in this section). Also see information about the many camps for available for people with MD.	-	Guide to the Evaluation and Management of Neuromuscular Disease Wonderful book that discusses some things that you won't hear from many doctors -- like why an MD patient should never need an arterial blood gas drawn, and information about noninvasive ventilators.
-	Ask NOAH ...has a great index of MD related sites -- includes information on common treatments for MD.	-	Muscular Dystrophy Campaign Has a good sized information library (Ask NOAH's MD page indexes quite a bit of this).
-	Guide to Physical Therapy at Home Information specific for people with SMA Type II, but provides information useful for almost anyone with MD.	-	Children with MD in Mainstream Schools Good article on a very important subject -- deals mostly with Duchenne MD, but will be useful for any parent of a child with MD.
-	Understanding SMA A comprehensive guide.	-	Usenet Newsgroup
-	Strength-L Discussion group mailing list dealing with neuromuscular diseases.	-	HUMOR HELPS The Ultimate Humor Resource Directory has lots of links to favorite humor sites, plus some personal experience about how humor does help.
-	See My Art Showcases artwork done by children with SMA. This page has lots of images and may load slowly -- please wait for it, I assure you it will be worth it.	-	RJ's Web site: The Psychedelic Rose (Note the abstract rose on the right that RJ created himself!) Fabric moments (His poetry page)