Appreciate input from families with DMD kids 13 and beyond and still walking. Could you please share best pracices. What do you think worked in your case? What suplements / herbal / medications /exercises etc do you use to maintain strength/flexibility...

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I would like to know more about this subject too. Please fill me in!
My son was diagnosed at age 9, he is 17 now and still walks. I'd like to be able to tell you that there was something special that we did, but there isn't anything. He does use a manual/power assist wheelchair for school, for long distances and for occasions when it will be really difficult for us to pick him up (like a movie theater, the seats are just too low). He can't get up from sitting anymore, but once he is on his feet, he can walk. He fell and broke his leg about 3 1/2 years ago, after 6 weeks being non-weight bearing he worked really hard to walk again. He is currently going through serial casting to stretch out his heel cords and is even able to walk in these casts.

Susan
I will be 19 years old this august && i am still walking.
Using leg braces, walking, swimming, and doing stretches all helped me.
The only supplements i am taking are calcium and green tea extract, but i believe the greatest thing was my faith in God.
Thank you and God bless you all!
I'm hoping Bradley will walk past 13. He is 11 and still gets around well for a boy with DMD. His thigh MRI at Cincinnati showed so much muscle deterioration, Dr. Wong is surprised he is still walking.
Hi Lisa,
I was crushed when I read your post about Bradley's issues that arose at Cincinnati. I have emailed back and forth with you so I feel like I know you a little....I had our son Will at a cadiologist apt. a couple of years ago and he said that with the drugs they have now, he could control the heart in regards to DMD. Since you mentioned that Bradley has some change in heart squeeze, I wanted to be sure to pass that along.
On the walking piece, it seems to be that there are really important things - like stretching, stretching and more stretching...and night boots...I wonder if you will see any improvement with B. going on a daily RX of deflazacort vs. predisone on pulse (weekend). Dr. Wong is encyclopedic. You are in good hands....
I am thinking about you all and pray for you all.
Best -
Char Burke

Hi Susana, this is Galia, mother of a 4 years old with DMD. Could you pls tell me what green tea extract brand you're using and where you buy it from? (+ the dosage). That would help me...

Thanks,

Galia.
 
Susana Arroyo said:

I will be 19 years old this august && i am still walking.
Using leg braces, walking, swimming, and doing stretches all helped me.
The only supplements i am taking are calcium and green tea extract, but i believe the greatest thing was my faith in God.

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