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...
Sep 1, 2007 2:10 pm
18899
I don’t know much when it comes to electrical stuff, but I do know that things like ventilators, cough assist and battery chargers will need much more than a...
Cody, From what I've heard the cough assist needs a special inverter that I think the maker sells. Take Care, Kimi }i{ Visit my myspace page and blogs:...
What's an icd? ... From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On Behalf Of Cody Namesnik Sent: Saturday, September 01, 2007 5:25 PM...
Calling the company probably is the best way to find out exactly what kind of equipment you need. I noticed that Respironics bought out JH Emerson. Mark ...
http://nodakwheeler.blogspot.com/ ... Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. [Non-text portions of this message have been...
My 29-year-old son had an ICD implanted on June 4. His lung capacity is below 15% (< 0.8 liters), so, he had only lidocaine to numb the insertion site. NO...
Gapko, Andrea M.
gapkoam@...
Sep 3, 2007 12:34 am
18908
Mark, Is your new wheelchair an Invacare chair? If so, what model? I really like the lateral tilt option. Andrea ________________________ From:...
Gapko, Andrea M.
gapkoam@...
Sep 3, 2007 12:55 am
18909
It's a Invacare storm series chair but Motion Concepts did the lateral tilt. You can do a net search for Motion Concepts or I can e-mail you the link. Take...
Thanks, but I know how to reach them. My son Jacob had the Invacare chair, but his brother had a Blast 850 with motion concepts components. Andrea ...
Gapko, Andrea M.
gapkoam@...
Sep 3, 2007 1:45 am
18912
The nursing supervisor was here Friday and she said she thinks she has detected a heart murmur on Nathan. I know this might mean nothing but it is new and...
The Telethon raised over 63.7 million. I have Dish Network and watched it on WWOR in NYC. There was a beautiful disabled girl helping out the local hosts. I...
Terri, It is often recommended that boys with DMD should be on heart drugs early--so don't wait--be sure the boys see a cardiologist knowledgeable about DMD...
Gapko, Andrea M.
gapkoam@...
Sep 4, 2007 4:24 am
18916
I know. The cardiologist said to ask a genetic counselor about meds and it wasn't until later that I realized he ONLY meant Nathan and Christian. I'm not sure...
I am one of "Jerry's Kids." In the 80s I appeared on the local Telethon. We thought if we worked hard to raise money for MDA it would help us later. No such...
I'm as confused as you sound. The cardiologist is the one to rx heart meds, not the genetic counselor. Unless he wants to see if Alex's problem was because...
Nick, many of "Jerry's kids" now adults feel that same way. We have gotten little bit from MDA over the course of the past 17 years, other than camp. When we...
Terri, This sounds like a really difficult situation to navigate. I think I'd seek a cardiologist who is specifically skilled in treating people with DMD --...
Sean, Why did your doctor recommend a group home over living with parents???? My 29-year-old son lives at home and wouldn't choose another setting due to...
Gapko, Andrea M.
gapkoam@...
Sep 4, 2007 4:44 pm
18922
Andrea, There are plenty of reasons why an adult would want to not live at home. It isn't exactly the most natural setting, and not the setting that most...
I basically agree with Jason, but think it's important to point out that there are lots of different very positive reasons that people would choose not to live...
My son Ryan is almost 21, anyway about 2 or 3 yrs ago, no one seemed concerned about Ryan's heart. After hearing about this guy and that guy dying because of...
I believe that the general guidelines (Someone PLEASE jump in if I'm wrong about this) is that men with DMD, above age 16 or so, who have not had previous...
I can’t say it enough times, but we need Standards of Care. Each and every MDA CLinic MUST follow them. Each and every parent need to have a copy of them...
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