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...
Has anyone tried the "Inspire" support groups?
It is like DS that has many different groups along with several lung groups like COPD. Pulmonary Fibrosis, Lung Cancer, Sarcoidosis, astma etc.
It also has anxiety, chronic pain and so many groups (like DS only possibly more conditions are covered). They even have caregiver support groups a hospice & bereavment group & groups for those loved ones that live with us that are ill. I feel is is not some fly by group as the lung groups are supported by the American Lung Association.
Here is a link to a list of sites & i think you can join here also, if you chose. https://www.inspire.com/groups/
I am a member of a few groups however I have not been very active since they changed their board format and I didn't like the new format. Howsever the new "inspire" format is looking pretty good when compared to DS now.
you can write journals, post pictures (even in the topic where you are talking), invite friends, watch posts you started or chose to "follow" or watch for posts by your friends.
you can send private messages to others and severa features that we seem to be missing now.
The communities that I joined are very active and informative. ( I went there originally because of my PF. DS had no active members) inspire had sooooo much support & activity members.
anyway, their main topics is kind of a list like DS has done, which is 1 of the things i don't like. Where it just puts a paragraph up of the original post of the topic & you have to click on it to read all of a long post & the answers to it. (that was what i didn't like when they changed their format), but the rest of the options are looking pretty good now after dealing with DS!!!
This is just a suggestion and I don't know if people here will like it or not. However with so many of our DS memebers leaving DS it might be a board we can all meet at & adjust to. l am not "touting" it as the greatest board on earth, but it is very active & has many capabilities that we lost here at DS.
I have been most active on the PF group, but have joined COPD & the Living with lung disease site.maybe i'll see some of you there ((((HUGS)))))
Please, this is just a suggestion, if you don't like it that is fine. In fact it's been awhile since i have gone there so maybe this post will be a good place to post replies if you try it & if you like it or don't like it.
(((((HUGS)))))) R
In general, I believe it is good that one seeks out all the information they can about their disease. One can get a lot of information from that site as many of the primary responders are at least reasonably informed. So always worth at look. However, cyber-bullies do dominate and many have commercial interests. The website does have more support for inter-personal exchanges, but I advise to keep them “non-public” (ie, below the surface).
Also, I just went in there & being a member of 3 different groups, i can click on the side to see all of my communities & all the posts come up in newest 1st order of all the groups. or i can click to see just 1 group.
I'm not saying Inspire is the greatest, but many people are looking for new places to try out & I figured it was one I could give an opinion on.
I know of another group that is REALLY simple to use; but i personally felt a couple of administrators run it & preach exercise to any question asked so I didn't suggest that one.
I suppose someone else may suggest it that likes it :)
Now that I took a "relaxing" day; i just thought i'd surf around & look for options as I haven't heard any other suggestions (and fear granny is still trying to get in here as she was looking for new site also)
happy evening all ((((HUGS)))
I hate the idea of leaving here, I feel like I am losing friends, since I have gotten to know some of you. I am losing my Ds family... sad
There are a lot of different health groups also, not just COPD.
In the meantime i've been going into inspire & the people seem friendly & welcoming.
Although the format is better than the new DS, I do not like the format of just a paragraph of post then have to click on it to see the full topic or answers (just like this new DS)
.......I do like that I can join several health conditions & I have a choice to see them all together on the main page (in order of when someone posted) or I can chose to see just 1 condition at a time.
.....I went to inspire originally because of my PF (pulmonary fibrosis). DS had a PF forum, but it wasn't active & someone suggested inspire & I found many people on the Inspire PF forum with a log of excellent information (besides support)
I still don't really care for the format, but it is nice to have one place that has good support.
and yes, as with all sites there are those that don't always provide info that has been well researched, but there is also ones that provide well looked into research.
It has it's pros & cons & i'm checking it out to see if I like it.
;;;;;;gwapos suggestion of "team COPD" (qwapo, you may need to put a link for others here to try) I kind of got lost in the "team' aspect of it....but it seems a well put together board & the Q&A section has some great information.
I guess we all just keep looking, trying out & giving input on boards we find until we find one that we can all enjoy & not lose each other,
This site gives me a headache and i'm quite upset that I have to use an email address that I don't want to use for this.....But DS now just ignores my letters & won't even try to get me into my original account, but they won't free up my email either so I can't use it to make a new account.
i'm giving DS till the end of the month to get me straightened out & then i am out of here like many of our members that have all ready gone.
A huge site with lots of different areas.
Inspire is ok although I don't go there much myself.