I walked a good 4 years about 5 due to it and kafos. I believe the way it made me walk it made my trunk strength stay longer. i started walking with a walker,...
Sorry, I was looking more at the description of various respiratory options. That information could provide a good basis for people unfamiliar with the...
I think we have an intruder. ... From: SKumbera@... [mailto:SKumbera@...] Sent: Saturday, May 01, 2004 9:36 PM To: MD-List@yahoogroups.com Subject: Re:...
Donna, I am so sorry to hear that Tyson is in so much pain that he wishes the doctor had cut his legs off. My son, Corey, had the surgery when he was 12 and...
Bob, I hope you can get your son to a good pediatric pulmonologist that understoods that oxygen use must be very limited with his condition. I was lucky...
We recently purchased an Invacare "Phoenix" wheelchair lift (an arm that swings out of the back of our van, hooks onto the chair and lifts it to swing it into...
We have a Ricon split lift. This is our second one. It is nice because when the lift is up it has a split in the middle and both sides folds back so it does...
Hi, We went to see Dr. Kathryn Wagner at Hopkins today. She was a young doctor specializing in Muscular Dystrophy. She is a Assistant Professor of Neurology....
If your disease does not cause this problem you may need a C Pap machine. Before Mike went on the Biap he used the CPap. My brother has Sleep Apnea and stops...
Sounds like things are going OK for Mike. We go to see Dr. Quigley at Mt. Washington. She's a peds. Pulminologits. Dr, Gloth has ordered a blood test to...
CPAP is not usually recommended for DMD. the BiPAP is better because they don't have to breath out against such high air pressure. Typical settings for BiPAP...
My son is 8 and has had a c-pap for about 4 months now. He has had a sleep study and has obstructed sleep apnea. He doesnt need a bi-pap, but definitely needs...
Has anyone else heard about this? This is too much!! CDC wants to determine the prevalence of cognitive impairment of female carriers of DMD!!! Questioning...
I am amazed too that they want to spend money on this study when I am sure the money could be put to better use. For instance, what about the appalling lack...
JoyceGlass@...
May 4, 2004 5:46 pm
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New CDC request to study cognitive abiliities of dmd carriers!Well said, Marie! Johanna ... From: Pichaske, Marie To: MD-List@yahoogroups.com Sent: Tuesday,...
I thought I would let everyone know about these upcoming Respiratory Chats which will be held at the MDA web site. To to register and participate visit:...
Very good answer Marie. They should be spending money on something more important. Maybe they have so much money they don't know what to do with it. Arlene ...
Maybe this person is having sleep apnea instead of a problem from the disease. I don't think she has DMD. Arlene ... because they don't have to breath out...
That's why Michael started with a cpap, he went through a sleep study, he used that for about 5 yrs and then the bipap now for 3 yrs. Arlene- ... a sleep study...
Hello Marie, I'm unfamiliar with this study. I know CDC is working on a research study concerning cardiomyopathy in female carriers of DMD. Do you have a link...
Who do we contact to tell our story as mothers of boys with DMD? Does someone have a copy of the CDC proposal? How do we contact CDC? I should think a number...
Sam be careful with this and enquire what the doctor knows about dmd. He is young he could very well have obstrutuctructed sleep apnea but since he also has...
I am shocked at this response. It has nothing to do with mothers of boys with dmd. This has to deal with carriers that could have dmd itself, it does happen....
Our pulmonologist switches DMD kids to BiPAP when CO2 rises to about 42-45. Andrea Gapko, Director Educational Support Services and Academic Skills Center ...
Hello All, The House Appropriations Letter went to the Committee with 68 signatures of support! This letter and the Senate version seeks additional resources...
