Hi anyone on here
I came on her expecting everyone to be chatting away.sadly it looks like the forum is in decline.most of the recent dates showing are From last year there. Is only dr johnny.posting really.
are you using 'latest activity'? - its the only way to use the site as it is. hopefully the new version will be along soon.
Creative Corner is usually active!
When are we getting the 'all-singing/all-dancing web-site/forum thingy? It seems to be taking some time.
perhaps it failed the auditions?
i agree, i been ill for last month ,and when i returned last week i was shocked to see some new members which is great,but the older ones seem to of vanished.ive done some resurch in to it all,and lot of them have moved to another forum which im not allowed to say the name of,and also gone to a thing called wayn which you join to chat to people all over the world,its not a forum so i think im safe to say that name.it a huge shame though ,it be nice to see the regulars back here as well,spread out abit,and bring back puk with some cheery faces on it
Hi, I haven't been on the Forum for that long,just over a month I think, but I enjoy it immensly. Obviously I am curious to see this new site which other people keep talking about. Will I be able to find it as easily as I found this one? I felt very lonely and isolated before I came onto the Forum . Although I have been a member of Parkinsons UK for a long time, but on the Forum I have made lots of new friends, and I find it easier to talk to someone who has PD because they know how I feel. As I have no sense of direction whatsoever, I hope I will be able to find the new site when it is up and running.
turnip...........My first port of call is,'latest activity,' but there is often no activity.This forum is dead and PUK do not show any interest in reviving it. That is why I post so infrequently.
Blue Angel...............don't hold your breath for the launch of the new forum, some of us have been waiting for ages.Maybe PUK is just waiting for so much disinterest in the forum that they have a reason to close it down, who knows?
Now I expect anothe e mail from Ezinda due to my impatience in getting this sad and sorry forum up to date with even a forum that can be downloaded for free and that runs better, with more facilities, than this one does at present, which, quite frankly is a sorry excuse for a forum.
So, Admin, the question is...............when is the new forum going to be up and running??
No excuses or sidetracking on how long it takes please.................I know exactly how long it takes to set up a functional forum from those availble free on the net and with the additions that you choose, at a little extra cost.
Aditionally, how much is it costing to set up the new all dancing and singing foum, whenever, or if it happens, and is this being funded by external means or from PUK funds???
Back up babe,
This is the only place that has EVER supported the likes of me,when at their lowest.At least this place stands by people who are struggling,whatever their problems may entail.Parkinsons is part of a giant jigsaw.An important part,but an addition to existing problems already ongoing with each person that comes on here.
Unlike other sites.Parkinson UK does not judge.It welcomes Newbies open armed.It does not vet them,scrutinise them,judge them,like other"so called help"havens?forums.I am One of the many,cut down to the dying core.When all that was left was friendly gestures,One true friend and here.
I have spoken personally to admin on here,who DID NOT JUDGE.That is One reason I am still around now."So What" you may say,but then multiply it.This place is a refuge.I will not have it said otherwise.
Go back in time,say 48 hours,plus you can only respond,to what is respondable(have i invented a new word).Anyway,luv ya anyway
I've always relied on PUK (or the PDS as it once was) for information concerning medication or support. However, regarding the forum, I've never really got the point in having moderators (nothing personal mods). We are all adults on here and have seen plenty in our lives (ok, we can all act childishly at times! So what?) but why can't we police the threads ourselves? Most networking sites these days are self moderated and you don't have to read posts or answer them if you don't want to!
Its a sad indictment of this forum when a moderator has nearly 500 posts under her belt! That smacks of interference to me and could be a reason why this forum is dead in the water. Censorship is only as good as the enforcer that wields the power to administer it!
Mitigation from the moderator team may come in the form of a proclamation stating 'protection of the weak and vulnerable'!
That's poppycock to me!
I haven't seen any PWP on here that has shown either of those characteristics.
Yes, the mods can preach that the newly diagnosed need to be reassured and supported to help them get through the initial bombshell that just blew their world apart, but who better to deliver that empathy than fellow sufferers?
Some like to skirt around the truth. Some like to get it straight up. Some just bury their heads in the sand. Whichever way an individual (PWP or Carer) gets any advice or information should be of their choice, not the choice of a moderator!
Too many posts get eradicated on the whim of someone who has no idea of how we feel. The content of the post is irrelevant to them if its not written in the way they deem fit. Any emotional outbursts are immediately designated to room 101 and warnings are issued by mail against the perpetrator.
Passion within posts are a thing of the past.
That's my take on the AWOL parkies!
Hmmmm.........the firing squad are at my door!
I'm glad that you feel supported by the forum but I did not say that it was not supportive.
This is the only forum for PWP where I post. The other forums/fora to which I belong are to do with cruising and it is one of them to which I referred- it was set up by an individual using one of the readily available free forum formats on the web; it has many features and works very well.
A few weeks ago I made a post which caused Admin. to contact me asking my permission to delete it. They do not need my permission to delete any post that contravens the T&C's and if this post had done that then it would have been deleted immediately. It seems Admin. just did not like the content.
When I pointed out the reason I had posted was to possibly safeguard newer members, those unfamiliar with past events, when 'fake' members have joined the forum purely to further their own means, I received a reply from Admin. which clearly showed that they had missed the point completely.I was not the only member to be contacted at that time.
So Pokermid, I was going to pick out a couple of paragraphs where I have the same thoughts as you on this topic but frankly, I agree with ALL of your post.
Awaiting a reply by Admin. of the launch date of the new forum.
I suppose we had better use it or we may lose it completely.
Keep posting !,,,,This site is for everyone . I did think it was getting quiet I put it down to people being busier over the Xmas
I have recently had a bit of bad luck, I have lost three good mates in two weeks
my purpose built workshop burnt to a pile of ash taking wheelchair and mobility
scooter with it, I am not totally stuck, but near enough, blood tests revealed
that prostate is once again a major worry , next week I have the perfect antidote
to carefree happy living , the detailed agony inducing camera up the stern, good
eh NOT,and you know Its nice to come here among friends and chat away, this forum could perhaps be more exspansive , the spell checker tells me I have wrongly spelt that word, well I don't give a flying ,,;;'/; and neither do you
do you , we just want to unload debrief relax chillout and all singing and dancing
well can anyone tell me what a singing dancing forum is.
Mr Grumpy fedex
Exactly fedex, and we should be able to say mostly what we like, within the T&C's.
Been a bit of a bad time here too, OH back in hospital, more trouble with bowels and all due to charming P; 999 last week as when I phoned the surgery that is what they said for me to do.Then I went down with NV.
Fed up fedex, you bet!!!
First let me say I am sorry you are having problems with your health, it
does seem at the time that you are been victimized bullied or even tortured, by
good old Mother Nature ,do you agree. Of course that is not the case but when you
are taking one hit after another it makes you wonder. It is now 1.17pm I have
been up since 5.40am, this was entirely due to Night Terrors and vivid hallucinations ,I cant even escape into sleep PD has some terrible weapons with
which to batter its human host but surely the vile cruel visions it creates when
we are in what should be the place we feel safest, our bed,is one of its most
destructive. There,, I feel much better now, I have had a good rant and rave at
parky when it cant fight back YEEEEESSS!,this forum has enabled me to that,so if
the powers that be do change the format, please not too much.
Life seems to be throwing the lot at me right now fedex.
I have an underactive thyroid, IBS, recently another nasty bout of costochondritis eventually responded to medication after many weeks and I am waiting for an op to release a trapped ulnar nerve but they won't undertake this until my blood pressure comes down!!!!!!!!!!!!!!!!!!Doubt it will come down with all the worry with my OH at present.
Hi, I'm a bit of a newcomer really so perhaps I haven't experienced some of the things your discussing? but in my opinion, this forum is, and should be, for 'anyone' affected by PD, from any walk of life, from any part of the country, or world for that matter, of any age, either sex, and is for discussion and for holding any opinion on virtually any subject , and in the main from what i've seen, I think it is.
However, they do take so called 'political correctness' a bit too far, in my opinion.
As an example, I used to post jokes on here, just to brighten our PD lives up a bit, but PC interference made me decide to give it up as a lost cause. It's o.k. It seems, to laugh at heterosexual white English males but step away from that and it's no go.
I'm Welsh and if there's a joke about Wales or the Welsh, I will laugh as loud as the next person - it's just a joke! My good friend is Scottish and he says the same thing, as does a very close black friend - it's just harmless fun, and readily accepted on other forums, but not here, in case someone is insulted or upset. No one actually knows however, if anyone will get upset because jokes/comments etc are quickly removed- big brother is watching.
Nevertheless, however many minuses there are, the forum is invaluable for gathering info about PD etc. and for meeting others in a similar health position, so it does have it's major plus side as well, and I would encourage everyone to stick with it, 'cause we can only influence it from the 'inside'.
Sorry if it all sounds a bit serious.
I had never used a forum before I joined this one, and have only ever made guest visits to others. I have not felt sufficiently interested to join any other forum.
I do not post very often but look at latest activity almost every day. There is usually something of interest or that makes me laugh. Sometimes there is a post that resonates with my situation (carer to my husband) or that I feel I can respond to because of my own experience.
On the whole I find the forum easy to use and the people on here supportive and friendly. I had some very dark days last year and found the forum a good place to vent my feelings knowing there would be somebody out there who knew what I was going through. It is good to know still that there is somewhere I can come when life gets difficult again, as it surely will.
I know there are some things which could be improved but hope that the updated forum (when it finally comes) does not throw the baby out with the bath water.
I try and keep busy on a few different forums and there are a few trends I have noticed in all of them.
1/ A discussion can soon turn into an argument.
2/ People who disagree with you seem to get terribly, terribly offended.
3/ If a discussion does get heated, the 'silent majority' do just that...stay silent.
4/ If anything can be taken personally, it will be.
5/ Some posters are looking to be offended.
6/ Some of our members have psychological problems that may or may not be caused by PD and the drugs. You have to be very sensitive to their needs.
The outcome of all this is that the forum goes quiet...which is such a shame. I love this forum. It has been a great help to me in some times of trouble. I think it is over-censored but I put up with that as I know some of our members need a safe environment.
Best wishes to the Administrators
I think "social club" has produced one or two heated debates. The important thing to remember is to always respect the other person's point of view and, if you think you may have overstepped the mark, always apologise. I have, in the past, posted quite a few threads, covering such diverse topics as the monarchy, learning foreign languages, coping with depression, tips about clothing and footwear etc. However, things do seem to have been a bit quiet lately. I put this down to the Christmas and New Year break. Or perhaps we are running out of suitable topics. Let's hope a revamped forum will encourage more debate.