Posted by Chris Post...garyTX on 5/10/2008, 9:21 am
69.46.49.204

COPD forum and thoughts. Posted by Chris M. on 2/1/2007, 10:23 pm 216.39.190.192 It's been a continual argument on the subject of forums and what is or can be posted and it's effects on people who may or may not act because of such information. I for one believe that more posts should be made posting folks experiences and opinions with the understanding that we are under the care of Physicians and our lives are important. It is a serious obligation on the part of posters to encourage MORE medical research and understanding on the part of readers, and not treat our worlds like this is a fun gig, full of whitty folks with no problems.. There are always people behind the folks doing the immediate posting, as in a vast possible number of readers who may never post but reflect on the posts in view of their own situation. Our pages carry the issue by noting we are offering opinions, and we are NOT medical professionals, even so, perhaps sometimes as I post I see 'a shadow'- the patient who should see their Doc but isn't. I sometimes won't answer in gory detail because this is something that just might frighten folks- I know, as I've been there! I'm a real worry wart- I know some of the hazards... I also think it's better to deal with suggestions instead of specifics. (I have some experience so I am not floored with specific numbers, but I can imagine someone with a diffuse disease and low FEV1 or lung volume managing to survive. I suspect some get their main exercise typing posts. I also suspect we have backline smokers, who won't post because they have bad lung problems but can't somehow, quit.) When I say suggestions, I mean not describing who's serious, or end stage or those quaint descriptions. Someone with mild disease today, may have pneumonia and could be a candidate for transplant overnight. Yes, we make every effort to stay as stable as we can, but folks who have had experience need to step up and share how they also got worn down, stressed out and it can lead to infections. Many folks are struggling with depression and won't admit they are actually served by reading the forum. And no I don't want to discuss your final arrangements, either. So yes, it becomes repetitive, but it can help when even more folks would step up and share their slightly different or even off key voice. We need the background folks to join and share what they think and worry about. I have never heard anyone admit that taking an anti-depressant improved their ability to exercise: but I do. One would believe, reading any of these forums that few deal with depression- but I think it's rampant and few admit it...I hear much, often, about anxiety attacks when they aren't doing well, but is this a brief escalation of depression, and have any folk sought help other than zanax, bs and or beer? I smoked as a consolation for my depression, I suspect. I think many have sought food as their latest companion. Is there a way to help encourage better eating, not recipes to eat more? Getting better diagnosis is fundamental to helping folks who want to thrive- and that comes with seeing specialists wherever possible, and not frightening posters into fear of additional tests. Some experienced posters believe we should send folks off to other sites for more facts, but I'd rather hear why having a stress test or an echocardiogram might help me understand my breathing, from your experience. I'm good at goggle, but not in my own self esteem. Learning how to connect with Pulmonary Rehab gets folks in touch with professionals- a Doctor to prescribe same, folks to listen and monitor as they exercise. I think it's very fair to encourage folks to get going- they need the kick as often as possible. I know I need encouragement, not your joy about your hour at 5 mph or even that you have a disorder that stops you- Most of us have a mental 'disorder' that slows us down! . Knowing that we can and do exercise is a great message.And di you have Rehab somewhere, and did it help? Maybe just buying a treadmill isn't enough, for most folks- it wasn't for me...I had no clue. I just knew I couldn't play tennis, paint my house, and the vaccum was killing me...A treadmill was the last thing I needed, all by myself. And contrary to opinion, I believe there are many Pulmonary Rehab Medicare qualified Centers out there, so lets start mentioning them! St. Josephs Carondelet in Tucson Arizona saved my life by getting me back on my feet. Long trip, but really worth it! Maybe each of us should post occassionally a Kudo for the good ones. Then send them our forum address. Well, I've blathered on here for awhile, ad I hope folks might understand that when you don't post enough, I tend to blather on. The easiest way to get me offline is to post your suggestions, and opinions and offer tantilizing subjects to discuss....I think a lot of folks may do better for having some good encouragement.

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