More Pots News

[heathmcev]

Way to go Todd -- I agree with you completely!! And Yogini - I want to sign that email petition to stop calling it the Grinch Syndrome!!!! We are looking for awareness, and to educate our doctors and families - not for POTS to be hijacked by one doctor trying to promote his own agenda. There. That's my speech

[soundandvision]

Sorry this is a little late to the game but, I was recently handed the study and was verbally told what the exercise regime would entail by the new EP I'm seeing, Ryan Cooley. Basically the exercise is based on your heart rate, I'm not entirely certain what that means he didn't offer any further explanation. But you start off doing recumbent exercise via swimming, recumbent bike, or rowing and then graduate to walking upright or an elliptical, and then from there work up to core training like Pilates and weights etc. I understand that some kind of exercise is important obviously to keep us from deconditioning and it helps us when blood begins pooling. However to say exercise is going to cure it is a bit much. I was active before this condition, I had an extremely active job. I continue to try to exercise and still move as much as I can and I'm still doing worse. And not once, after all the numerous amounts of heart studies I've undergone did someone tell me my heart was smaller than normal (in fact, my left atrium is enlarged from arrhythmia). As far as I know, Dr. Cooley is pushing this regime out to all his POTS patients, regardless of type.

Anyway, tl;dr: I have the study (dated June 15, 2010) and the consent form if anyone is interested. I can certainly scan it in and share. I'm not entirely certain if I can share the consent form in its entirety though. I wasn't told I couldn't but since this has been rather hush-hush, I don't want to run into legal issues. However, I imagine paraphrasing is OK (correct me if I'm wrong)?