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Non-Ambulatory

Members: 43
Latest Activity: May 16, 2016

Discussions

not able to walk anymore

Started by claire holloway. Last reply by Samantha Dearing Feb 15, 2010. 6 Replies

Swollen foot/ankle

Started by Patty Sherman. Last reply by Laurie Barton Mar 17, 2009. 1 Reply

6th Grade Camp

Started by Patty Sherman. Last reply by Cheryl Markey Jan 23, 2009. 3 Replies

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Comment by Lynne Taylor on January 24, 2009 at 8:37am
Our team have always gave good advice about weight gain and Ross always gets weighed twice a year when he attends muscle clinic. We were referred to a dietician but not worthwhile as she only told us what we knew already. Ross is very sensible and he tends to eat quite well. In school recently the boys were comparing weights and Ross was pleased he was the lightest.

Lynne
Comment by Cheryl Markey on January 23, 2009 at 12:22am
I did forget one thing to help explain my reasoning re: over weight.....let's just use our own common sense now.....we all know first hand how hard it is for a ambulatory person who is overweight to walk and move about how exhausted they become.....the stress on the heart and lungs.....so, just think what being overweight means to a Duchenne Boys body that is becoming weaker and weaker.....harder to move those heavy limbs with weak muscles....being overweight doesn't benefit them in anyway.....Dr.'s seem more concerned of ambulatory people being overweight and don't stress it enough for non-ambulatory people.

Cheryl
Comment by Cheryl Markey on January 23, 2009 at 12:12am
One thing I do like to touch base with and know it is hard when boys are taking steroids, but watch their weight.....being with extra lbs. and having weaker muscles makes it so hard to move, and caregivers can transfer the boys easier. I feel alot of the Dr.'s don't touch base on this.
Comment by Cheryl Markey on January 23, 2009 at 12:09am
Hello gang, how is everyone doing? My name is Cheryl Markey ( recently remarried on May 10, 2008 ), my son Adam MacDonald whi is 23 yrs. old has Duchenne. We live here in Presque Isle Maine, Adam was born in England while we were stationed at RAF Lakenheath with his dad ( he was US Air Force ), Adam was born prematurely at home on Oct. 20, 1985 ( due date was Jan. 3, 1986 ), he was whisked away when the emergency staff arrived first to the base hospital then later sent to be taken care of in the Wroxham Baby Intensive Ward in the Norfolk Norwich Hospital, he received excellant care while ther. Once he gained some weight, didn't need to be on oxygen and could be tube fed he was transferred back to the base hospital. He came home on xmas eve!!!! We returned back to the states and where stationed at Myrtle Beach A.F.B SC this is where we learned of his diagnosis of DMD, since then we have been involved with spreading awareness an raising funds for research.

Adam stopped walking when he was 14 and didn't get his motorized wheelchair till then, he used a manuel one first, had a harrington rod placed in his back at age 17, gets one session of PT a week, the PT at the MDA clinic Adam has seen since little asked once why Adam's feet aren't contracted and turned inward like you see alot in Duchenne boys....all I could say was he wears shoes all the time just like everyone else who doesn't have DMD, I advocate shoe wearing because it protects the toes and feet from getting injured or broke and they act like ankle foot braces....Adam tried leg braces didn't like them so, didn't wear them long, he took predisone for a couple of years then I weaned him off of it, he doesn't take any of the natural supplements or green tea or other things I have read on here that boys are taking nowadays, he has always just eaten a healthy diet, doesn't junk, for having DMD he is still a very healthy young man, gets a flu shot each year. He actuall is doing better than some of the younger boys we know personally here in Maine. I advocate keep out in the public, keep busy, don't baby them. I won't sugar coat it....it is a hard, long journey. I call it the Duchenne Journey......your group are the pioneers of the Duchenne Journey!!!!

Cheryl
 

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