I am an occupational therapy assistant student, and have been wanting to learn about the lives of people affected by this disorder. If anyone would like to share their story I would greatly appreciate it. I will be doing a presentation to 20 other students who in the future will be working with MD patients. I need to soak up all the knowledge possible. Please feel free to leave me a message

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As a nurse, I can tell you that most people, including me sometimes don't know the questions to ask. Getting the time from an occupational therapist and actually training the parents are moving, body mechanics, lifting....manipulating portable ramps, wheelchairs, equipment, toileting aspects, urinals....etc is all key.

Time for consults and evaluation is always built into the annual visits - but rarely time for active teaching!!! To me, this is a disconnect. Make sure you observe parents in action. Saying you can do it and then hurting yourself doing it are two different things.

Toileting and clothing are often overlooked. To me - the occupational therapy is the most important part! Coping with daily living!
I you haven't already. Look up Debbie Edwards on this site. She is an OT that attended our conference and has been working with parents and persons with DMD too. (She's also super sweet!) Also, I think it is in the 'groups' area that people have posted 'Our stories'. Most people on here would be more than happy to share or answer any questions! There are some parents here that have older children such as Brian Denger and Tanya Fleming that are wealths of knowledge! There are also people affected with DMD/BMD on this site and are considered our 'experts'! AND, don't forget to talk to Pat!! You'll probably get a good response just going to different people's sites and asking! My son is almost 6 and we are new to this, but I would be more than willing to give you my 'story' if you like or answer any questions you have. Good luck and thanks for caring for our boys!


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