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...
Jul 1, 2005 9:46 am
13329
Living with DMD is a chat for adults with DMD and others affected by the disease. Discussions will focus on how to live a fulfilling and healthy life with...
dmdpioneers@yahoogrou...
Jul 1, 2005 9:46 am
13330
Respite Care in a nursing home can be pretty bad. We sent my son to a large suppose to be a good nursing home for 2 nights last week. They wouldn't use the...
There is a waiver that is available in some states that the parent can be paid for caring for their child. However I hear it is a long waiting list. I think...
I don't know if I am allowed to do this here. But we need help - I have no choice but to ask. My child has autism and Beckers muscular dystrophy. I have...
I had an echo done about a week ago and found out my ejection fraction was 45%. It was 32% when I started 5mg of accupril and 25mg of Toprol XL in January...
Just wanted to share with everyone. This time I was in the water for 45 min. It felt good and I was moving some on my own and I was floating by myself for a...
It looks great Matt! Best of luck! Annette ... From: "Matt Johnston" <roadrunnermatt@...> To: <dmdpioneers@yahoogroups.com> Sent: Wednesday, July 06,...
If you have proof of medical necessity you should get your paper work together and contact your local agencies who are paying disability. Or your social...
My friend Michael Huehmer is in the hospital listed under poor condition with pneumonia in both lungs and slowly getting worse. Hoping my visit will raise his...
Took my son Ryan for regular MDA checkup and they decided he needed to see cardiologist today... Anyway... The heart doctor asked Ryan if he had ever had...
I think I've heard that people with heart problems sometimes have dreams of drowning. Not just people with DMD. But I never had a dream like that. ... From:...
You sound just like my son!!!! He told the doctor he had dreams but not ones he wanted to talk about with his mom in the room.. The doctor asked him if he...
Just wanted to share with everyone. This time I was in the water for 45 min. It felt good and I was moving some on my own and I was floating by myself for a...
Way to go, Matt! Matt Johnston <roadrunnermatt@...> wrote:Just wanted to share with everyone. This time I was in the water for 45 min. It felt good and I...
Our buddy, Michael Huehmer (aka cognitiveman), is in the hospital, listed under poor condition. He has pneumonia fluid in both lungs. Docs are doing all they...
Not sure what he's upgraded to, but Michael is doing much better. 1100 cc's of water was removed from around his lungs. He can finally breathe again, and that...
Can't say I've ever had a dream like that. Joe ... Joseph Malone Say what you will about the sweet miracle of unquestioning faith, I consider a capacity for it...
I've been reading some past emails about c-pap, I followed the links to the MDA website and to Dr. Bach website but I haven't really found much specifically ...
CPAP usually is never a good idea for DMD folks. CPAP is constant air flow and its difficult for someone with DMD to breath against the continous flow....
In August I will be traveling for the day and i'm wondering how I will get power when i'm on the road for my equipment if I need it. Any ideas? Is there such...
how will you be travelling? Amtrak has plugs. If you are taking a van, you could consider powering at restartaunts when you stop to eat, if you do. Not sure...
I looked at the back of the machine and it says: Normal frequency of AC voltage input in hertz 60 Hz power input in volt amperes 300 VA What capacity inverter...
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