COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
I just wrote up a whole post of suggested COPD support group sites & seemed to have lost it when trying to copy & past it to a new topic to make more sense. So i'm rather upset on another "glitch" I seemed to have found. Because of cutting & pasting this seems to be in all size of font. I am sorry but could not find a way to fix that; so please enlarge your font to a size you can read easily.
Anyway, there have been several suggestions on sites we might be intersted in checking out & giving our opinion.
1. gwapo suggested "My COPD Team" @ https://www.mycopdteam.com/users/sign_in it seems like a rather active group & I haven't quite gotten the hang of the "team" part, but I have been going into the Q & A and have found a lot of good information.
2. I suggested "Inspire" https://www.inspire.com/groups/ I do not like the format that well, but I do like several factors like; they have many groups for different conditions & seem to be very active. I joined it quite awhile back because I have Pulmonary fibrosis (PF) besides my COPD. DS PF site was very unactive, but inspires I found many people and a very active group that I got good information & support from. I hope the list showed up, becaus it is a site like DS (used to be) that you can join several groups/conditions. I have just found that on that site i can set my board to show current discussions in every group I have joined (they come up in order of when posted) or i can go into the group seperately. (I am not "touting this group---I just am trying to explain what i have found using it so far.
3. Great2beme suggested " COPDfoundation.org and their support group is COPD360social". I have had a hard time finding this; Tell me if i'm wrong but the link i found was; https://www.copdfoundation.org/COPD360social/Community/Blog.aspx for the copd360social & http://www.copdfoundation.org/ for the COPD foundation
4. An old group I used to go to was "COPD Support" @ http://copdforum.portalone.us/ it says it has 117 "active users" but not how many "lurkers" may be there. It seems to have freshly dated posts & has been around for a couple of years that I know of. Simple to use board with the front page having different topics to chose from ( like the old chat board days).
5.Joany sent me a suggestion today of "COPD Online" @ http://copdonline.net/Forum/forumdisplay.php?fid=10 I have just glanced at it & not really checked it out yet. It also looks like the easy format of the old chat board days.
I have not had a chance to check all of these out to give my opinion, but also it's not my opinion that matters!
I am hoping we can all go look around and give feedback in this post of what we do or don't like.
OH! It was also suggested that; " maybe there could be a new group there called COPD_DSescapees - something that would show up when you do a "COPD" search."
Anyway; Please give feedback on any sites you find that may be useful in us all finding a place to go. I think many of us feel the fear of losing track of our friends here on DS & that is keeping us here, but also many friends are leaving because of the anxiety it is causing. I am in no way direction anyone to use any certain group posted (i'm no leader LOL) and I hope people will continue to make suggestions of groups we can go to in this topic, until we find a place the majority of us can agree on. I don't want to lose "my friends" but i have been coming here less & less....and I see others coming less and less, so I do hope we can find somewhere to meet soon, before we lose track of each other.
Love to all my friends & aquiantences on this board. ((((HUGGS)))))
I too keep an eye on brenda's group on FB & I peek in on the new zealand group.
However, this http://philns.proboards.com is looking like it will become my new home group and I will be deleting this account once i'm settled in. (maybe they will find my original account someday)
I hope Grannie is found & someone lets her know where we are.
love ya all & I hope i see you soon!!!!
Now I have no idea what to do, it was so shocking and my hubby read it and could not believe what he read. I guess it's his forum and he can do what he wants, but really this is not excusable behaviour. I did nothing wrong at all.
I had noticed that someone posted something last week and within a minute it was gone. I guess the only way he believes people is not by symptoms and cat scans but by numbers. And that was my whole reason for the post to begin with. I wish other members had the guts to say something, yet I think the admin basically is something to fear.
My hubby said he wants to join just to say how life is for me, but I know it is useless. I don't know what that guys problem is. I wish it had never happened, as it is so hard to live with this and to have someone from a support site come and say "I am removing information as you are misrepresenting and now that I know you don't have copd....."
I left information from thoracic papers, not anecdotal. I cannot believe what he has done and how that made me feel.
I believe also the Grading using the stages is not really accurate...There are other factors that need to be considered....if one goes down the Bode Index route......By my low Fev.1 for example, i am Stage 4....But if you take into account my activity level, it is more like a Stage 3......Numbers are deceiving and the DLCO is the only one I consider very important, having a gas exchange issue....
Didn't read anything about fora but then I didn't look around once I saw the list of spam posts.