PPMD Community

Your input needed, to help us create a great library!

We need help from the DMD community: We are working on creating a library at The Denver Clinic and want your input. What books, DVD, etc. have you enjoyed or have helped you or your family deal with some of the issues of DMD or differences in general? We are looking for reference books, stories, kids books, movies, anything and everything; to make them available to patients and famlies. An extra special request, we need resources for our Spanish speaking families also! We appreciate all your help very much!

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Permalink Reply by cindy q on February 1, 2010 at 9:57am

Hi Angela--What a great idea! Would be great for all of our clinics to do this!

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Permalink Reply by Karen on February 1, 2010 at 11:04am

Worth the Ride by Josh Winheld. Great insight in to teens and early twenties with humor and candor.

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Permalink Reply by jenn on February 1, 2010 at 5:04pm

intensive care, mary lou weisman. heard her speak at ppmd conference, very frank and matter of fact book about being a dmd mom, word of caution, dont read it until you are ready to deal with late stage duchenne, have a box of tissues ready!

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Permalink Reply by jenn on February 1, 2010 at 5:05pm

and, of course darius goes west goes without saying...

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Permalink Reply by Karen on February 10, 2010 at 9:47pm

Physical Therapy Manual for dmd. I think the PPMD publishes one. Oh, Dr. Bach. Manual for the Care of patients using noninvasive ventilation. I'm not sure if this is a book or a chapter in a book Neuromuscular disorders.

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Permalink Reply by Deb Robins on April 8, 2010 at 10:11am

Jacob Gapko just produced an annotated bibliography of DMD fiction and non-fiction which is fantastic. You can download the .pdf of it here

Jacob didn't have the brief or funding to include films so I might add my two bobs worth about two films - the film of Intensive Care was terrific with Liza Minelli but I saw that on television in the mid-90's and I've not seen since so I'm not sure about the title. More recently, the Scottish film "Inside I'm Dancing" with James McAvoy is just brilliant - but if you're not laughing you're crying. It has a theme of independent living - the two central characters have DMD and CP and they team up to get out of the old aged home.