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Bruce Ward
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  • Royal, AR
  • United States
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Has anyone tried a Segway (scooter) for the late ambulation period?

Started Oct 3 0 Replies

I had a thought this morning that a Segway might be better than a wheel chair as the standing would help to prevent contractures. The Segway handles the balance so the rider's muscles focus on…Continue

Building a Calf / Ankle Stretch Ramp for use while brushing teeth for $15

Started Sep 28 0 Replies

My cost was actually $0. I saw lots of expensive options online then decided to build one from scrap laying around.  It is not pretty but is a good start.  I used an approximately 16x16 inch piece of…Continue

Creatine Kinase (CK) Ranges for Becker

Started Sep 28 0 Replies

I have not been able to find a reference to how high CK can go in Becker.  I wonder if some Becker parents could share their son's serum Creatine Kinase values.Thanks in advance. Continue

What was your son's experience switching from prednisone to deflazacort (Emflaza)?

Started Sep 25 0 Replies

I know that obtaining deflazacort in the US is quite difficult now.  We are waiting for genetic test results for our ambulant (417 meter 6MWD) son.  Based on the 1…Continue

 

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Bruce Ward is now a member of PPMD Community
Sep 18

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Awating Diagnosis
City:
Central
State:
Arkansas

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At 10:31am on September 28, 2017, sulthana shaik said…

I am so sorry for your loss. This is a  hard pill to swallow , 

I look up to your discussions as an inspiration, 

At 11:46am on September 20, 2017, Joshua's mom said…
Hi Bruce,
Joshua passed away in February of this year at the age of 13 from congestive heart failure.
The supplements he was on, we started one at a time, at the age of 3, to be sure there was no reaction to them. Before starting them, he practiced swallowing rice krispies because he hated the taste of chewing them! They helped keep him ambulatory till he was 12, he rode a bicycle, climbed the stairs and didn't feel restricted. Once his heart started to weaken at the age of 12, he was then in his wheelchair full time and we stopped the supplements because the medication stopped and changed too. If you do have further questions, please ask. I believe the regiment he was on is still on my page.
Naomi
 
 
 

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