DMD Pioneers Mailing List Chats are held every Sunday at the time listed below. 3 to 5 PM Eastern 2 to 4 PM Central 1 to 3 PM Mountain 12 to 2 PM Pacific To...
dmdpioneers@yahoogrou...
Mar 1, 2008 6:07 pm
19865
Michelle, If you're still on this list, did your son get his BiPAP set satisfactorily? Did you get the expiration pressure set to a lower number? 10 for...
Gapko, Andrea M.
gapkoam@...
Mar 1, 2008 7:56 pm
19866
http://www.scottsandsalive.com To receive SCOTT SANDS ALIVE blog updates by e-mail, simply follow this link: http://www.scottsandsalive.com/?page_id=49 ...
To anyone who wishes to offer some input, Jean's son is developing spinal curvature and they are contemplating the decision whether or not to put Jimmy through...
Hi Jean, I received your question about curvature through DMD pioneers. I had two sons with DMD-one had scoliosis and died at age 22 (you can see a picture of...
Gapko, Andrea M.
gapkoam@...
Mar 3, 2008 11:11 pm
19870
http://www.scottsandsalive.com To receive SCOTT SANDS ALIVE blog updates by e-mail, simply follow this link: http://www.scottsandsalive.com/?page_id=49 ...
Hi Jean, I'm 23, DMD and had a scoliosis surgery when I'm 13 year old, Mine is a S curve so the doc inserted a rod in my back to make my spine straight. I will...
I hope this technology quickly becomes incorporated into devices for the physically disabled. http://tinyurl.com/2nh69u [Non-text portions of this message have...
I have tried every remedy in the book and I used to have a shelf with enemas, mineral oil, exlax, senacot and supositories. For me the only thing that works...
In my life experience I believe that I became a dmd survivor when I began using a ventilator via trach when I was 24. Had I not connected I would have died....
Hi everybody, Can anyone tell me what works for them as an alternative way to drive a wheelchair? I've been using the joystick on the right side, and finding...
I recently started using MSN Messenger. If anyone is up for a transatlantic chat, my id is LionLikeUs. Mattias [Non-text portions of this message have been...
My son Peter (20 years old) had a terrible month. It started the first week in Feb with severe constipation. He had to be catheterized because it was also...
Annette, boy and I though I had been though a lot since the beginning of February! I care for a 29 years old w/DMD. He is trached but doesn't use the vent...
Adele, Peter has been using a Bipap at night for over three years now. The doctor that was on duty in the ER is an older pediatrician who's at least 60 years...
Hi Kimi, has Josh Winheld's book about his life with DMD come out yet? If so could you please post a link to where it can be purchased, thanks. -Alan ... ...
This is a copy.... Jean, Hi, my name is Kimi and I thought I'd write to you in response to your email on the back surgery. I do not have DMD, but my fiance...
Hey Alan, Yes it has been published and he's actually having his first book signing this Sunday. I know there is a link on his blog Winheld's World: ...
A while back I think I asked about masks and chin straps and more recently I posted about "Chin Up Strips". For those who don't remember (perhaps most or even...
Hi Charles, My son has been wearing a mask that covers his nose also. We do have the same problems on and off. Here is what we do and it worked and he is not...
Holly, Does Eric have a "full-face" mask? That is, does it cover both nose and mouth? If not, does he end up also breathing through his mouth? Jacob just...
Gapko, Andrea M.
gapkoam@...
Mar 6, 2008 5:09 am
19889
Nope, I don't do "when things get stuck" Sorry....Eric gets a stool softner every other night and it is one you just buy at wal mart. If it gets worse I'll...
Holly, Peter is having his chair evaluated tomorrow by one of the best providers in the greater Houston area. However, he was just checking to see if there ...
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