I am basically a 35 year old medical conundrum...I live on a ventilator full time, have severe diaphragmatic weakness (docs don't know why...I just do lucky me!) along with a slew of other things. I love to read, am passionate about life and intend to live it to the ful
[More]lest. I have two wonderful children and a supportive family. That's me in a nutshell :)
Just a quick note to say hi! I am trying to find people with Bilateral Diaphragmatic Paralysis. If you want to talk more about it and have Facebook I have created a Facebook Page called Bilateral Diaphragmatic Paralysis... My E-Mail is cctaft6@ rochester . rr . com so hope to hear from you soon!!!
Hi Sunny, been a long time since I've been in. Hope you are doing okay.
Did anyone ever hear from Joey again for his plication surgery - going back to 2008 here-really been a while, although we passed a couple of notes in 2009. Looks like the diagnosis of parsonage-turner was the right one in my case. Supposed to be anywhere from 2 to 10 years to recover, with most saying 5 to 10 as normal. But, there is no treatment they say - wrong. Been using an acupuncturist, chiro and an oesteopath for the past 2 1/2 to 3 years, have at least 95% recovery as of now. Still a small problem breathing when I bend over, but I can keep breathing.
Even sleep without the c-pap machine again, past 8 months. I'll stop writing the book here. Thanks again for your support in the beginning.
Have been reading your posts. My dad has a paralyzed diaphragm and has been searching all over the country for help. Nobody knows why he is like this. Its getting harder for him to breath everyday. He is on oxygen 24/7 but its getting less helpful. Can you write me back to help out....
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