Good questions about COPD, Exercise and Oxygen..

[ozboy]

www.nationaljewish.org/conditions/copd-chronic-obstructive-pulmonary-disease/overview/faq

[jarca]

Good link.
My favorite question= 
"Will I have to exercise for the rest of my life?" 
I have a sick sense of humor, especially as I get tired in the evening--did who ever ask that question think they'd get an answer like, 'no, excersise for one month and you'll never have to move again?' (in all our dreams )

And this question isn't "funny" it frustrates me=
"Is COPD the same thing as emphysema?"

It seems that combining bronchitis & emphysema into the one term "COPD" only confuses people....I have even run across Dr's that talk like COPD is it's own disease & emphysema a 2nd disease. 
and if Dr's can't get it straight, how can the common person?

(of course i also get frustrated that they linked COPD to smoking so much that the minute i say i have COPD people ask, "oh, you smoked?"
---i think it gives people who don't smoke a false sense of security that they are safe from this disease & causes many who did smoke to feel like they "deserved" getting this disease)---off my soap box again

[gerald]

A quick read of that sight concerns me a little bit. 

First impression is that most of the information there seems to be a bit simplistic and a bit dated?
It is almost like it was thrown together because the realized they did not have one on COPD.

[ozboy]

I think it is a basic view for people just starting out...you will be surprised that out in the wider community like in FB Groups, how little people know about their own disease........the amount of times these questions get asked really amazes me but then..there was a time i had to ask myself in order to learn....

I try n be pro-active seeing I was only diagnosed when i was 36% already so it was the old DS forum that saved my butt....Every day we learn new things and i can guarantee what we believe right now to be gospel, some study will prove us wrong tomorrow.....

With the Emphysema/Bronchitis thing....that is where people ask that if Emphy people do not normally cough or bring up mucous but they have issues with it, then it gets confusing trying to explain about ''components''.......in my case i have Emphysema with an Asthma Component...yet i rarely suffer Allergies as the usual ones that affect people..

With inhalers for those more advanced there seems to be a few trials introducing an ICS together with their LAMA/LABA inhalers.....plus there are many new and varied combinations being trialed in OZ n NZ.....because places like India are already manufacturing their own generic versions of the old Corticosteroid Inhalers. So the Pharma Industry are fighting back, in order to grab back market share.....does not mean they are any superior to what is around now,,>>>>Money n Profits.

and Jarca...I bet if you stop n chat to a stranger on the street n tell him/her you have COPD, they would not have a clue...Tell them Emphysema and their first question is ''Did you smoke''

[gerald]

Your point is well taken.      I have gotten so used to the knowledge level of most of the
people here I sometimes forget about the people that are back where we started.

It is a good place for people start off with.   They will soon progress as they are ready
for the greater level of detail.

[lavishgail]

I get very nervous reading this..I get scared.

I hate what I have. And I'm scared. But im learning.

[ozboy]

It's absolutely normal to feel scared and apprehensive....plus you are dealing with some very frightening conditions of your own as well.....I meet many people almost daily that are terrified when they join our group and read stuff we old timers share.....I also find many are already going thru the depression and anxiety since being diagnosed with COPD.........In a way I really enjoy that as a group we take these people under our wing, so to speak because it can be a very lonely disease around family n friends, who do not understand what is happening...

So maybe it is my calling these days, seeing I am mostly stuck in my safety zone most every days and this is a fantastic outlet....The best part is we are all in the same timezone and both OZ n NZ are very similar in treatment options and medical care.....There is always someone around 24/7 to chat......

My mixed country groups are very interesting as i get to learn a lot about new ways or solutions to living and coping plus the general chat is quite educational.....

I still have many moments that disease overload can cause a lot of stress and self pity but it passes quickly these days.....So Gail...take your time to educate yourself because knowledge is very important but remember that much of it might never happen to you....So don't take it to heart.....Deal with your current issues as only you know them better than anyone else and even then there are people here that will walk by your side......

[jade]

Thank you Peter.I think the reason I am here still I owe to my exercise routine. It is not that I like or look forward to do every day but somehow I manage to go .Good and interesting people I met helps a lot.I do have some self pity,not all the time. It is progressive disease and Gail I am scared as well sometimes.

[joany]

Recently I've been overly concerned about people who have "recently joined" this group.  I don't find posts/threads from the "recently joined."  Is there more to be done as I remember the first time I joined a COPD support group - I wasn't quiet?  This post certainly can help those just diagnosed.   But, I don't know - I'm missing something.

[lavishgail]

Thank you Peter, and Jade. You're words mean everything to me, I'm not alone.
Joany, I feel the same, why do people join and never even say hi? We welcome them and they don't have the courtesy to even say hi back! It makes me not want to welcome anymore. But then that's not right, bc there may be that one looking for someone like we were?
Plus why so many members from years ago? That have not posted? I would clean house if no one has posted in the last year. Obviously they have gone elsewhere, or have no desire to come back, or are back under God knows how many different names bc they forgot their passwords? Oh i think about this too. And are they robot's? Or people having a laugh at us for what we write? It makes me wonder a lot. Sometimes to much.

[gerald]

There are a lot of people here with a lot of knowledge and experience, there maybe
a reluctance to post due to a lack of confidence or lack of experience. 

Everyone has value to contribute.

For those that are newly diagnosed their knowledge of what may be the newest
medications, newest tests, newest doctors pronouncements can be extremely
valuable to all of us.   Others may know of suppliers where we can buy things we all
need from Oxygen Concentrators to air hoses, medications, natural remedies etc.

[lavishgail]

Good point Gerald. But why not just give us a ? And what happened to people like Blossom, and Susanne, and a lot of others that came and we're here a couple years ago and never come back? Just curious, like the cat? Many members 100s that many are fearful to say hi? Js. I have no idea how to say half of the things I use, I call things I use like my 02 my breathers and don't step on my hose , or can you turn on my breather machine. I have to grab my breather bottle. Haha, I have no clue what things are called or how to pronounce, but I am talking and learning,And for those of you who don't know, I'm actually shy! I know that's sounds crazy, but in all realty , I am...

[ozboy]

Actually this is not unique in forums these days....Even the new revamped ex COPD International are struggling, with only the old time regulars contributing and the same with Portalone......There are too many newer more social based groups around like the FB COPD world site that is super busy........BUT they do not get the benefit that our old time forums hold in the archives and the experience in the past topics.....People are lazy these days..they want instant answers, they are not prepared to search online but rather ask a question and want a solution immediately.....There are countless times I have to return n read old posts n topics from the past because I still need answers...and it is mostly all there...It will be a sad day if these forums end up closing, because of lack of contributors or lurkers...

Without new blood it is the converted talking to the converted and guess eventually these people move on or pass on......I do not know an answer but I can assure you that many that sign up, do so once and most do not hang around.....The daily log in account is the best indicator...

Example..we have an early risers bunch in our home group...those of us waking at ungodly hours start the day off there....we already know so much how it is the almost identical reasons that this happens...Just before coming here, there were 18 people online chatting..and it is 7 AM.....I truly believe people want conversation plus advice, specially when one is at different stages in their journey and do not feel overwhelmed with discussions that goes straight over their heads........BALANCE is where success lies and without people like me and others that have that knowledge then the group as a whole will end up another FB Newsfeed....

Just my opinion xxxxx

[joany]

Good point i.e. many people are changing the way they receive information.  Quick is what's happening i.e. get in get out next! 

I tend to be more on the opposite end - much overthinking on my part.  I hope everyone gives/receives what they need whatever lane they travel in.  The time I spend mulling over one thing or another is part of my makeup - I don't remember every making a snap decision.  Hopefully there will always be people with me in the sllloooowwww lane.

[lavishgail]

You got me Joany...XOXOO

And thank you Peter, I fully understand now. I really like this forum. I like to have something to look forward to. Thanks for answering my questions.