Ernie Posted January 8, 2009 Report Share Posted January 8, 2009 Hi everyone,Thanks again for your support throughout my journey. Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 8, 2009 Report Share Posted January 8, 2009 That is awesome! Fabulous news!!!! Quote Link to comment Share on other sites More sharing options...
iheartcats Posted January 8, 2009 Report Share Posted January 8, 2009 This is fantastic! I'm so happy when people post good news. Congrats, Ernie, and I hope 2009 is a great year for you. Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 8, 2009 Report Share Posted January 8, 2009 Ernie,How would you describe your formula for getting rehab to work for you? I also did some rehab-- maybe 16 sessions--and found it helpful. But the people didn't really know what to do with me-- they followed my lead, as they'd never had an ans patient before. I had my rhythm monitored, but they didn't ck my bp as often as I would have liked, as that is where my issues mostly lie. And they're so used to working with hypertension. It basically was supervised exercise. I also made sure to always bring lots to drink and needed extra time after the session to restabilize.I now work out on my own with a hr monitor, going by symptoms. My rule of thumb is to slow down if I start feeling unwell and see if that's enough to normalize things. I have to ramp up slowly, or my ans can't adjst. And I do better with increased resistance/incline than speed-- I guess it's more forceful muscle contractions, moving blood better.But it would be really nice to see a written protocol for rehab for ans people, since our issues are somewhat different from those of people with more standard heart disease(s). Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 8, 2009 Report Share Posted January 8, 2009 Congratulations Ernie !!!I was wondering about this too. My PT had me doing leg strengthening excercises while laying on my back. I start with ankle rolls or presses, then up to knee squishes (pressing knee against mat or raising my foot while my knee is on rolled towel), then thigh squishes, then toosh squishes and then what's called the bench where you have your feet up near your toosh and raise your hips in the air ... Then I'd go on the recumbent bike for 7 - 10 minutes ... I found that I had to go REALLY slow on the bike or else I was getting winded and fuzzy headed ... He never used a heart monitor on me ... which really surprised me ... when I asked, he said it wasn't a cardio rehab center. Would you all recommend a cardio rehab center ? I may have to look for a dysautomonia doc in my area ... Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 9, 2009 Author Report Share Posted January 9, 2009 Hi, Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 9, 2009 Report Share Posted January 9, 2009 My Pilates instructor is a physical therapist, she looked up POTS and then just keeps asking what I a can do. She pushes me, but she also watches me VERY closely.I bet with the experience here we could come up with a graduated basic program ourselves based on the severity of our conditions. Then we could submit it to Dr. Grubb and Vanderbilt and see if they would modify it. I was told at Vanderbilt that exercise increases blood volume through the renin/aldosterone system and that coupled with the increased muscle strength would help compensate for the ANS problem. (More lower body and core exercise with light arm (above the head) conditioning. They said that walking in a pool is best because of the water pressure on the body and the amount of total body resistance. Do we have any former physical therapists here? (I think we do.)We have to do practically everything for ourselves, from diagnosis to research, why not this? We could then add it to the downloads here! Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 9, 2009 Author Report Share Posted January 9, 2009 Hi, Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 9, 2009 Report Share Posted January 9, 2009 YEAH!!!!!!!!!! ERNIE!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
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