im 20 years old and still walking yes i do have DMD...

i was just wondering is there anyone else my age still walking?

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Hi Dakota. My son turned 20 in April and is still walking. He has been taking deflazacort for 10 years. What type of mutation do you have? My son's is a deletion of 3-7.

\Hi,

happy to hear that.

May I ask for your's son mutation type and what medications and supplements your son is on?

Thanks

hey donna i have deletion 3-7 i was looking at your profile its crazy how much me and your son are alike with duchenne.. my mom said she would love to talk to you over the phone.


Donna Taylor said:

Hi Dakota. My son turned 20 in April and is still walking. He has been taking deflazacort for 10 years. What type of mutation do you have? My son's is a deletion of 3-7.

Well the doctors don't know exactly what I have, but I'm still walking. Keep on trucking sir. Remember keep healthy diet, and exercise.

Hi,

My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.

Can you share your advice /experience here like how many times in a day you stretch/exercise?What other vitamins/medicine you take other than deflazacort?Do you go for physical therapy/aqua therapy?wear splints things like these?I understand that DMD patients are different in their progression but may be some advice can help.

Hi,

My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.

Can you share your advice /experience here like how many times in a day you stretch/exercise?What other vitamins/medicine you take other than deflazacort?Do you go for physical therapy/aqua therapy?wear splints things like these?I understand that DMD patients are different in their progression but may be some advice can help.



Donna Taylor said:

Hi Dakota. My son turned 20 in April and is still walking. He has been taking deflazacort for 10 years. What type of mutation do you have? My son's is a deletion of 3-7.

Hi,

My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities.

Can you share your advice /experience here like how many times in a day you stretch/exercise?What other vitamins/medicine you take other than deflazacort?Do you go for physical therapy/aqua therapy?wear splints things like these?I understand that DMD patients are different in their progression but may be some advice can help.


Donna Taylor said:

Hi Dakota. My son turned 20 in April and is still walking. He has been taking deflazacort for 10 years. What type of mutation do you have? My son's is a deletion of 3-7.

I am eighteen in a month and I was afraid of not being able to walk after 20 but then I saw your post! Thank you just for posting that!

Hi Dakota-

So glad to hear that you're still on your feet! My son is almost 10 and is walking (running!) still. I'm wondering if you have any advice for me....because he is almost 10, he is too big for a stroller, but still will get tired if we are on a long adventure. What do you do when you're tired? Do you have a chair for back up? 

Parents--anyone know of a large stroller for a bigger kid who still needs a walking break?

Dear all reading your posts give me hope that things might not be that worse as i  unfortunately expect , my son is just 2 years old and i was afraid that he will not be able to walk in near future  (hope not).

it is first time i hear about deflazacort is it ok for all type of DMD? can you give a brief?and what other vitamins is help full? let we all share what our sons take hopefully they all get benefit from each other's experience, 

my son take L-carnitine, B plex, D3&A, calcium.

hope to hear from you soon.

That's great Dakota!. My son Hernan stopped walking at 16. Did you have heel cord surgery at one point? We chose not to do it but I would like to know if you did and if it worked for you.

Sam, deflazacort works for all boys with DMD. My son started taking it when he was 8. He will turn 26 in August. His lungs and heart are pretty good. The only adverse effect that was noticeable in our case was that my son did not grow much. He is about 1.40 meters tall (about 4'8").
Nope no heal cord surgery. But I broke my femur in January just starting to learn how to walk on my own. I have the same problem with height problem but I'm a bit taller 5'0" feet tall.. My heart and breathing are pretty good also. Doctor have said my legs strength is better then my upper body.

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