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Permalink Reply by Joshua's mom on June 23, 2010 at 10:45am

Has she ever worked with another whom has DMD? That would be my first question! Taking a break from physiotherapy, in the same breath, would be the same as telling him not to use his legs. Each day PT is essential! It keeps the muscles loose so he can use them.

This is the link to the DMD stretches PPMD put on you tube.
http://www.youtube.com/watch?v=0_ecVd3kNtQ

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Permalink Reply by Melanie Sunny on June 23, 2010 at 11:10am

Thank you very much! Joshua's mom.
I don't know if she has ever worked with another whom has DMD, but she is very familiar with DMD.
My son has 45 minutes PT each Monday at Texas Children Hospital with his therapist, and he also have 30 minutes swimming lesson on each Tuesday and Thursday. We do give him about 10 minutes stretch every evening at home.
Thanks again for the link to the DMD stretches.
Regards,
Melanie


Joshua's mom said:

Has she ever worked with another whom has DMD? That would be my first question! Taking a break from physiotherapy, in the same breath, would be the same as telling him not to use his legs. Each day PT is essential! It keeps the muscles loose so he can use them.

This is the link to the DMD stretches PPMD put on you tube.
http://www.youtube.com/watch?v=0_ecVd3kNtQ

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Permalink Reply by Penny Hauer on June 23, 2010 at 12:25pm

s ometimes strectching is just what they need we did that for a time then stairs become a promlem and we worked on that therpy can be very helpyful other times it can make your child tired. that is not helpful. as times pasts you will learn to guestion what is helpful and what is not. ask your Dr also there comes a time where therapy will no longer be help its sad to hear my son is 9 and we see the pt every three months for her to tell us he has platoed meaning that it no longer helps I get it but it still hurts Caleb is still hopes he will be able to run.however he can home from school the other day and said I get it now running is out can not do it Im having troublem seeing the type this morning so Im going to stop hope this makes sence I do not understand why Im seeing Penny

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Permalink Reply by Karen on June 23, 2010 at 9:28pm

Hi
Please don't stop PT at age 9. This is when your son needs it the most. Stretching the various muscle groups avoids contractures (very painful) and helps with comfortable seating. Get a second opinion on stopping PT. No changes in disease course isn't a reason to stop PT. My son is 18 and receives PT every week.

Penny Hauer said:

s ometimes strectching is just what they need we did that for a time then stairs become a promlem and we worked on that therpy can be very helpyful other times it can make your child tired. that is not helpful. as times pasts you will learn to guestion what is helpful and what is not. ask your Dr also there comes a time where therapy will no longer be help its sad to hear my son is 9 and we see the pt every three months for her to tell us he has platoed meaning that it no longer helps I get it but it still hurts Caleb is still hopes he will be able to run.however he can home from school the other day and said I get it now running is out can not do it Im having troublem seeing the type this morning so Im going to stop hope this makes sence I do not understand why Im seeing Penny

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Permalink Reply by Karen on June 23, 2010 at 9:29pm

Hi

At this age stretching (getting it into a routine, like brushing teeth) is important. They can also work on balance and coordination. We have had year around PT since Erik was 3 years old. He is now 18.

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Permalink Reply by Melanie Sunny on June 24, 2010 at 9:31am

Thanks for all the replies thus far. Would love to hear some more people's experiences.Thanks!

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