Duchenne Muscular Dystrophy:
A Manual for Parents

Last Updated January 23, 2003

YOUNG PEOPLE WITH DUCHENNE MUSCULAR DYSTROPHY
ARE NOT STUPID.
THEY CAN READ, AND USE A COMPUTER AND A MODEM.
IF YOU ARE A PERSON LIKE THAT,
AND YOU ARE CURIOUS ABOUT THESE PAGES,
READ THIS BEFORE YOU GO ON:

Some information here may be worrisome.
So do yourself a favor, and don't read it alone.
This is a work in progress.
Eventually, I hope it will become an easy-to-read reference tool that will give parents of children
with Duchenne ideas for what may work for them. But right now, there are just a couple of pages.
And most of what is in them is based on what I read in books.

If you are a person with Duchenne MD, or live with one, please read this. And then get back to me
with your feedback: yes, that happened to me, too; no, my experience is different; this is what I did to solve this problem. Your input will make this collection of tips and tricks a lot more realistic.

These pages contain my opinions, and I'll take responsibility for them. If room permits, I will also include links to the snippets of information I've collected, so you can see what my opinions are based on. No matter, if anything in here strikes you as especially true, or doubtful, or incomplete, please let me know about it. If you can, please quote chapter and verse, so that it's easy to see what you are referring to.

Also, if you want to write a section that I have not covered yet, please let me know. I'll be happy to give you full credit for your work.

Here's how to reach me:
With a modem:
* E-mail: [email protected]
* via the Muscular Dystrophy List (subscribe at http://groups.yahoo.com/group/MD-List)
* via the L-Strength List (subscribe at http://www.dnaco.net/~turtle/strength-l/index.htm)
By mail:
Anne Zeilstra
4951 Abbey Lane
Shelby Township, MI 48316
By phone: (586) 997-0593

Thanks!
- Anne (Mr. Z) Zeilstra

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