I wrote something on the Anonymity posting about how I feel about this forum and had a response from Eck along the lines that they agreed with what I was saying.
Once again the forum has been hit by heated discussions, resulting in postings being moderated. Some people might thrive on this but I suspect the majority dislike the upset it causes.
Maybe this is an ideal time to let PD UK know how you REALLY FEEL about this forum - do you find it helpful? Do you want changes? - if so get the suggestions down on here for them to see.
I remember (now I am sounding old!) when this forum was a thriving community - I, personally, don't think it is now - Please use this posting to let PDUK know - if it is a negative point - try and be constructive - have you an alternative for them to try? What do you like about it? And all those folk that don't post and just read - maybe this is the time to put pen to paper (so to speak!)
I'm not sure myself the way forward - it needs thinking about but I hope I am not alone with this.
Living with PD is hard enough - we should all be pulling together.
The Breeze
Hi Breeze
I support this forum because the advice I have received has been invaluable. I can say things that I dont feel comfortable saying to others who are non PWP. The postings on DA's and OCD''s were very helpful but I feel it has exhausted itself and the bickering should now stop.
I support this forum because the advice I have received has been invaluable. I can say things that I dont feel comfortable saying to others who are non PWP. The postings on DA's and OCD''s were very helpful but I feel it has exhausted itself and the bickering should now stop.
Hi, I am just about to post a simple question (my first) about Parkinson's.
I have read the forum on and off for a couple of years but have been reluctant to post anything because it always seemed to be dominated by a few people who must sit at the computer all day waiting to have their say. However after discussion with my friends decided to try to like it and pass on valualble information at our local group. So here goes ...
I have read the forum on and off for a couple of years but have been reluctant to post anything because it always seemed to be dominated by a few people who must sit at the computer all day waiting to have their say. However after discussion with my friends decided to try to like it and pass on valualble information at our local group. So here goes ...
Hi Breeze,
Thank you for starting this thread. My feeling is that this Forum is often the first port of call for people who suspect they might have Parkinson's or have just been diagnosed.They may not register but they read the postings.Therefore, this Forum should have some threads that make them feel that their future life could still be worthwhile. Warnings about certain medications do have their place, but if the majority of threads are of the terrible side effects, then the blow that they may have just been given will be reinforced.This,also, means that when somebody posts something positive it is not immediately followed by a posting deriding it.
For anyone who has heard me tell this story before I apologise.When John was diagnosed he immediately had to fly off to China with his Morris mates to dance his way round China, including on the Great Wall.I cried for the two weeks he was away,thinking how he would feel being forced to give up his hobbies of Morris Dancing,marathon running,teaching Country Dancing, calling at Barn Dances and playing squeeze boxes. He retired early so these hobbies were of particular importance to him. It was reading the postings of some people on the Forum as it was then, that lifted my spirits and made me think that perhaps he could make a life for himself. People who had had Parkinson's for many years were still making their life worthwhile. Those who have just been diagnosed, especially,those who are still working and perhaps supporting a family in various ways, need support, including emotional support. That is what,I feel, the Forum should provide. Incidently,we are now nearly eight years since Parkinson's showed itself in this family and six years since diagnosis and John is still doing most of the things he has always done.Not as well as he did, but good enough to give him great satisfaction and tremendrous enjoyment.
Thank you for starting this thread. My feeling is that this Forum is often the first port of call for people who suspect they might have Parkinson's or have just been diagnosed.They may not register but they read the postings.Therefore, this Forum should have some threads that make them feel that their future life could still be worthwhile. Warnings about certain medications do have their place, but if the majority of threads are of the terrible side effects, then the blow that they may have just been given will be reinforced.This,also, means that when somebody posts something positive it is not immediately followed by a posting deriding it.
For anyone who has heard me tell this story before I apologise.When John was diagnosed he immediately had to fly off to China with his Morris mates to dance his way round China, including on the Great Wall.I cried for the two weeks he was away,thinking how he would feel being forced to give up his hobbies of Morris Dancing,marathon running,teaching Country Dancing, calling at Barn Dances and playing squeeze boxes. He retired early so these hobbies were of particular importance to him. It was reading the postings of some people on the Forum as it was then, that lifted my spirits and made me think that perhaps he could make a life for himself. People who had had Parkinson's for many years were still making their life worthwhile. Those who have just been diagnosed, especially,those who are still working and perhaps supporting a family in various ways, need support, including emotional support. That is what,I feel, the Forum should provide. Incidently,we are now nearly eight years since Parkinson's showed itself in this family and six years since diagnosis and John is still doing most of the things he has always done.Not as well as he did, but good enough to give him great satisfaction and tremendrous enjoyment.
This forum is tops. Its the best.
As new members join, they are given a warm reception and are told there are plenty of fantastic people here.
They aren't wrong.
They will find a big mix, some opinionated, some timid, some funny, some sad; it's called a broad spectrum of the population. Sure there are clashes for personality and opinion. I have three Westies. When two of them get into a scrap the other jumps in and splits them up. When I played football there were handbags at 20 paces from time to time. Again its the way we are.
I see spats and I'll try to lighten the tone or keep well out of it or I'll be flippant and end up in the middle of it. Generally I've kept out of trouble and sat back and laughed.
I had a few ideas about improving things.
A forum motto : DECORUM IN THE FORUM
or as my late grandmother would tell you : "If you have nothing nice to say, don't say it"
Changes to the FORUM app. that may allow you to ignore users if you dont like what they have to say.
I think if you start a thread you become that threads MOD. i.e. You (the threads originator) get a say in how your thread developes. Any undesirable posts, like petty squabbles and such like can be booted.
The "new post" screen includes the original point to help keep everyone on track and it doesn't descend into whether or not to discuss DA's.
That's my tu'pence worth and my thanks to the breeze for adding a long overdue topic.
As new members join, they are given a warm reception and are told there are plenty of fantastic people here.
They aren't wrong.
They will find a big mix, some opinionated, some timid, some funny, some sad; it's called a broad spectrum of the population. Sure there are clashes for personality and opinion. I have three Westies. When two of them get into a scrap the other jumps in and splits them up. When I played football there were handbags at 20 paces from time to time. Again its the way we are.
I see spats and I'll try to lighten the tone or keep well out of it or I'll be flippant and end up in the middle of it. Generally I've kept out of trouble and sat back and laughed.
I had a few ideas about improving things.
A forum motto : DECORUM IN THE FORUM
or as my late grandmother would tell you : "If you have nothing nice to say, don't say it"
Changes to the FORUM app. that may allow you to ignore users if you dont like what they have to say.
I think if you start a thread you become that threads MOD. i.e. You (the threads originator) get a say in how your thread developes. Any undesirable posts, like petty squabbles and such like can be booted.
The "new post" screen includes the original point to help keep everyone on track and it doesn't descend into whether or not to discuss DA's.
That's my tu'pence worth and my thanks to the breeze for adding a long overdue topic.
.
I agree, ECD.
I have a cause, and as I still meet new PWP virtually every day whose lives have been destroyed by DA/OCDs, I will continue to campaign.
However I do not wish to dominate the Forum with either myself or my topic. I strongly wish to see in-depth discussion and debate on every relevant topic possible, whether of interest to me personally or not.
Come on all you lot, get posting! Liven the place up! No more grumbling, just inspired discussion!
Ray.
.
I agree, ECD.
I have a cause, and as I still meet new PWP virtually every day whose lives have been destroyed by DA/OCDs, I will continue to campaign.
However I do not wish to dominate the Forum with either myself or my topic. I strongly wish to see in-depth discussion and debate on every relevant topic possible, whether of interest to me personally or not.
Come on all you lot, get posting! Liven the place up! No more grumbling, just inspired discussion!
Ray.
.
Well said.
As far as I remember, I became a member of this forum about 2 years ago, when newly diagnosed. I posted simple, probably naive questions and received helpful answers. The names of the persons who replied were irrelevant to me, it was the reply I was interested in.
I enjoy a GOOD debate, even though I may seem to sit on the sidelines.
So what I would like to see is:
A separation of the treatment area of forum into :
Q & A about PD & PD meds
Debate about PD & PD meds
The creative & social sections seem to be able to muddle along together. So I don't see why people can't expect a reply to a question without getting involved in a debate
I enjoy a GOOD debate, even though I may seem to sit on the sidelines.
So what I would like to see is:
A separation of the treatment area of forum into :
Q & A about PD & PD meds
Debate about PD & PD meds
The creative & social sections seem to be able to muddle along together. So I don't see why people can't expect a reply to a question without getting involved in a debate
Close it down.
Start again with only paid up members of the PUK allowed (this gives the added security re multiple identities)
Insist on proper moderation by moderators who are accountable to.
The moderation on this site is appalling. It allows subjects to deteriorate beyond any useful advice. Sections of threads are deleted arbitrarily, leaving nonsensical postings.
We the people who actually have PD and the carers should have more involvement in the forum and its content and direction.
Threads such as the DA saga have been done to death. There is no need to constantly go over the same ground time and time again.
If you have a proper set up you can create a section that gives all the information and help you need. Newbies can be directed to it and NEW ideas and issues can be debated and added if relevant.
Essential reading can be highlighted.
These changes are simple to administer and cheap. If PWP were involved they would probably get it voluntarily.
This is an important forum because the PUK is the place newly diagnosed people are directed.
At the moment it is a disaster of a site, that people wont post on either because they feel intimidated by a minority and or they cant see the point as anything valid they write gets lost in pointless debate, changes of subject or gets deleted.
QUESTION FOR MR FORD.
DO YOU ACTUALLY READ THIS FORUM.
IF YOU DO THEN I AM TRULY SHOCKED THAT YOU HAVE ALLOWED IT TO GET LIKE THIS.
IF NOT THEN SOMEONE OUGHT TO GIVE HIM A NUDGE.
THIS SITE IS ACCESSIBLE TO THE WORLD AND SHOULD BE THE TRUE VOICE OF PWP UK
THIS ILLNESS IS LARGELY SELF MEDICATING. WE ARE GIVEN A HANDFUL OF PILLS AND TOLD TO GO AND GET ON WITH IT, SEE YOU IN 6 MONTHS.
WE NEED TO COMMUNICATE EFFECTIVELY WITH EACH OTHER SO THAT WE CAN PROVIDE THE SUPPORT WE ALL NEED.
IF WE ARE ALLOWED TO DO THAT PROPERLY THEN WE CAN IMPROVE OUR QUALITY OF LIFE AND PROVIDE AN INSIGHT FOR THE DRUG COMPANIES, NEUROS AND RESEARCHERS THAT MIGHT LEAD TO A CURE.
Leyther
Start again with only paid up members of the PUK allowed (this gives the added security re multiple identities)
Insist on proper moderation by moderators who are accountable to.
The moderation on this site is appalling. It allows subjects to deteriorate beyond any useful advice. Sections of threads are deleted arbitrarily, leaving nonsensical postings.
We the people who actually have PD and the carers should have more involvement in the forum and its content and direction.
Threads such as the DA saga have been done to death. There is no need to constantly go over the same ground time and time again.
If you have a proper set up you can create a section that gives all the information and help you need. Newbies can be directed to it and NEW ideas and issues can be debated and added if relevant.
Essential reading can be highlighted.
These changes are simple to administer and cheap. If PWP were involved they would probably get it voluntarily.
This is an important forum because the PUK is the place newly diagnosed people are directed.
At the moment it is a disaster of a site, that people wont post on either because they feel intimidated by a minority and or they cant see the point as anything valid they write gets lost in pointless debate, changes of subject or gets deleted.
QUESTION FOR MR FORD.
DO YOU ACTUALLY READ THIS FORUM.
IF YOU DO THEN I AM TRULY SHOCKED THAT YOU HAVE ALLOWED IT TO GET LIKE THIS.
IF NOT THEN SOMEONE OUGHT TO GIVE HIM A NUDGE.
THIS SITE IS ACCESSIBLE TO THE WORLD AND SHOULD BE THE TRUE VOICE OF PWP UK
THIS ILLNESS IS LARGELY SELF MEDICATING. WE ARE GIVEN A HANDFUL OF PILLS AND TOLD TO GO AND GET ON WITH IT, SEE YOU IN 6 MONTHS.
WE NEED TO COMMUNICATE EFFECTIVELY WITH EACH OTHER SO THAT WE CAN PROVIDE THE SUPPORT WE ALL NEED.
IF WE ARE ALLOWED TO DO THAT PROPERLY THEN WE CAN IMPROVE OUR QUALITY OF LIFE AND PROVIDE AN INSIGHT FOR THE DRUG COMPANIES, NEUROS AND RESEARCHERS THAT MIGHT LEAD TO A CURE.
Leyther
I like the forum and find it hugely useful and supporting. I will continue to use it even though there are some faults, namely online bullies and overt censorship. Still it is better than nothing!
I figure 99 % of people here are kind, gentle folk trying to make the best of this bad situation. As always, there are a few nutters who have agendas.
I would like a second, more free section or website. An area where you can vent your spleen!
Chris
I figure 99 % of people here are kind, gentle folk trying to make the best of this bad situation. As always, there are a few nutters who have agendas.
I would like a second, more free section or website. An area where you can vent your spleen!
Chris
i would like to see the moderaters sometimes join in with threads ,not just the das ones all of them ,in one way or the other ,even if it to say that was alovley poem well done keep them comin
not just appear when some one reports some one for doin rong,or there is a debate on a thread and things get deleted with out the rest of us nowin wot has happinined and left to worry bout things when things are kicking off,also when someone is suspended to may be expalin to the other forum members why it has happinined ,so the person who is sittin behind there lappy who can not do nothin but watch all there friends worry over them ,un nowin the truth of the matter,and things get out of hand then all sorts of lies poppin up every were bout that person,im not sayin give a massive paragrath in detail just enough for other to least understand the issues i would like to see the rules may be put in simpler ways so people say like me or other members with other issues can read it and actually understand it proper ,so they dunna make big mistakes may be the resurchers get involved on here to and let us no the real truth about how far a cure is,with out us guessin things and it turnin into a debat agin ,cus at the end of the day the forum is becomin one big debate
not just appear when some one reports some one for doin rong,or there is a debate on a thread and things get deleted with out the rest of us nowin wot has happinined and left to worry bout things when things are kicking off,also when someone is suspended to may be expalin to the other forum members why it has happinined ,so the person who is sittin behind there lappy who can not do nothin but watch all there friends worry over them ,un nowin the truth of the matter,and things get out of hand then all sorts of lies poppin up every were bout that person,im not sayin give a massive paragrath in detail just enough for other to least understand the issues i would like to see the rules may be put in simpler ways so people say like me or other members with other issues can read it and actually understand it proper ,so they dunna make big mistakes may be the resurchers get involved on here to and let us no the real truth about how far a cure is,with out us guessin things and it turnin into a debat agin ,cus at the end of the day the forum is becomin one big debate
Hi All,
Like the Parkinsons UK helplines, initially the forum is a lifeline for anyone who makes contact. You cannot have a lifeline and then say "Are you a member" to someone who is about to grasp it. However, I wonder if everyone does realise that their opinions are out there in cyberspace for anyone to google. I used a key word to google a subject and found an opinion heading up one of the list of websites to try that was wonderfully close to my own ideas only to realise with a shock that it was from one of my posts here. This was two years ago so that might have been remedied?
General and specific information about Parkinsons and its management is freely available from Parkinsons UK so I don't see a place for it anywhere here - the appropriate links are here to try if wanted. Forums like this also give you the benefit of other people's experience of current treatments as well as things which have yet to be generally accepted and I certainly value this aspect.
In response to the above posts as to the content of threads the obvious has been pointed out by the moderators several times that there is no place for personal attacks here and the rules state this clearly. Howeever, just because one is offended by a post does not mean that it is offensive per se. and therefore no excuse to become offensive in response.
That the original post should appear at the top of each page is an excellent idea but what do you do about a very lengthy one?
Like the Parkinsons UK helplines, initially the forum is a lifeline for anyone who makes contact. You cannot have a lifeline and then say "Are you a member" to someone who is about to grasp it. However, I wonder if everyone does realise that their opinions are out there in cyberspace for anyone to google. I used a key word to google a subject and found an opinion heading up one of the list of websites to try that was wonderfully close to my own ideas only to realise with a shock that it was from one of my posts here. This was two years ago so that might have been remedied?
General and specific information about Parkinsons and its management is freely available from Parkinsons UK so I don't see a place for it anywhere here - the appropriate links are here to try if wanted. Forums like this also give you the benefit of other people's experience of current treatments as well as things which have yet to be generally accepted and I certainly value this aspect.
In response to the above posts as to the content of threads the obvious has been pointed out by the moderators several times that there is no place for personal attacks here and the rules state this clearly. Howeever, just because one is offended by a post does not mean that it is offensive per se. and therefore no excuse to become offensive in response.
That the original post should appear at the top of each page is an excellent idea but what do you do about a very lengthy one?
Good morning. Great to see the thought that has gone into the postings. I've noticed that a thread about a new chat room has opened - and that mass desertion has been mentioned - it links in with this - why have people left - if you know such folk - ask them to write it here. The more we can show PDUK the better.
I feel that the information available from PDUK should be clearly available on the forum page - a list of terminology - of medication - a quick reference guide.
I would also like the practice of multiple identities stopped - correct policing by PDUK needs to be put in place - they need to appreciate that people do this and can cause much upset and worry. This forum needs to be a safe place to post - not an easy prey site for those that want a victim.
This forum needs to be readby PDUK - we can all see when a posting is going downhill - they need to step in and nip it in the bud -not by deleting but by warning and if need by banning. As suggested there can be a chat room for those who want to rant and rave with a warning about going in.
Respect and common courtesy needs to be maintained.
When I used to work I would have to go to meetings where we did "blue-sky thinking" Basically it was just writing down ideas - however "silly "they might sound. Yet it was quite often one of those "silly" ideas that actually worked. If you have not written your view yet please do.We are all entitled to our own opinions and I would like this thread to be nonjudgmental to encourage folk to write.
Forever an optimist
Breeze
I feel that the information available from PDUK should be clearly available on the forum page - a list of terminology - of medication - a quick reference guide.
I would also like the practice of multiple identities stopped - correct policing by PDUK needs to be put in place - they need to appreciate that people do this and can cause much upset and worry. This forum needs to be a safe place to post - not an easy prey site for those that want a victim.
This forum needs to be readby PDUK - we can all see when a posting is going downhill - they need to step in and nip it in the bud -not by deleting but by warning and if need by banning. As suggested there can be a chat room for those who want to rant and rave with a warning about going in.
Respect and common courtesy needs to be maintained.
When I used to work I would have to go to meetings where we did "blue-sky thinking" Basically it was just writing down ideas - however "silly "they might sound. Yet it was quite often one of those "silly" ideas that actually worked. If you have not written your view yet please do.We are all entitled to our own opinions and I would like this thread to be nonjudgmental to encourage folk to write.
Forever an optimist
Breeze
Thats a good idea Breeze.
Why have people, who once were the mainstay of this forum left it completely or post infrequently.
Needs a seperate thread I think and a bit of a round up of the old stagers.
Will sort it.
Why have people, who once were the mainstay of this forum left it completely or post infrequently.
Needs a seperate thread I think and a bit of a round up of the old stagers.
Will sort it.
ThIs Forum was the first thing i found when nearly 6 years ago i was dxn with this hateful illness, like most people i hadnt a clue where to go for advice & help ,and with help from now absent members i came to terms with what to expect, but as time went by some more agressive & strong minded people joined the forum with various & multiple usernames the site then changed unfortunately for the worse , although i still read it on occasions, and see that people still squabble over unrelated issues ,forgetting the real reason for the PDUK forming , im very grateful for the site as it was , no blame for this is pointed at the moderater,who has a thankless job , Parkypete
There's a lot of good ideas already been said in this thread on how to improve this forum.
Surely it can't be that hard to have a system that stops people setting up multiple accounts/ID's, it's obvious that it's happening on here a lot, why anyone would want to make more then one ID I don't know? plus it's deceitful, it's not what you want to be a part of when your looking for support, you want people you can trust when you have a question or a concern.
Why can't the DA/OCD thread be made a sticky? I actually stopped reading that thread a while again, it's not helpful it just goes around in circles with the same things repeated, let people give their experiences on it, of course they're bound to differ but that's because were all different!
This is the first place newly diagnosed pwp come for imformation, It's important that this site/forum is as helpful as possible and a welcoming and supportive place where they can feel comfortable joining in, I think it lost that feeling a long time ago.
Surely it can't be that hard to have a system that stops people setting up multiple accounts/ID's, it's obvious that it's happening on here a lot, why anyone would want to make more then one ID I don't know? plus it's deceitful, it's not what you want to be a part of when your looking for support, you want people you can trust when you have a question or a concern.
Why can't the DA/OCD thread be made a sticky? I actually stopped reading that thread a while again, it's not helpful it just goes around in circles with the same things repeated, let people give their experiences on it, of course they're bound to differ but that's because were all different!
This is the first place newly diagnosed pwp come for imformation, It's important that this site/forum is as helpful as possible and a welcoming and supportive place where they can feel comfortable joining in, I think it lost that feeling a long time ago.
IVE READ ALL THE POSTS ON HERE AND ALSO ON SOME OF THE OTHER THREADS,I SEE ALOT OF PEOPLE ARE MAKIN ISUES OF PEOPLE SQUABLING ,OR PEOPLE OVER TAKIN THREADS ETC,I FEEL NOW CUS I MADE A BIG MISTAKE BY POSTIN SOME THIN FEW WEEK BACK ,I NO THAT THE FORUM BECAME A ISSUE ABOUT ME,BUT I NEVER ASKED FOR ANY OF IT ,IHAD TO SIT BACK AND JUST WATCH IT ALL,IM FEELIN THAT A FEW PEOPLE NOW FEEL LIKE IM ABOUT MAY BE TO MUCH ON HERE ,AND WHEN IM NOT THERES ISSUES GOIN ON BOUT ME,ALL I EVER WONTED TO DO IS LEARN ABOUT PD AN TO HAVE A LAUGH IN THE CAFE,INO IM NOT BRITE AT ALL AND MAKE MISTAKES ,I PIG SOME PEOPLE OFF MAY BE BY THE WAY I SPELL AND TALK ,BUT LIKE I SAID IM GETTIN VIBES IM NOT REALLY WONTED ON HERE ,SO IM GOIN TO GO FOR ALITTLE BIT AND SEE IF IT HELPS THE FORUM IF IT DOES I WILL STAY AWAY ,BUT IVE NOT ASKED FOR ANY OF THIS ,ONLY NOW HOW I FEEL OTHERS ARE FEELIN THEM SELFS
1 Like
Dear forum members
Thank you for all your contributions to this thread and for your ideas.
As moderators we work hard to try to ensure that the forum remains a vibrant and welcoming place for all people affected by Parkinson's but to do this we also need your help. The forum Guidelines were drawn up together with forum users. Following these guidelines should help everybody to find what they need from this space:
http://www.parkinsons.org.uk/default.aspx?page=8686
The contributions that you all make to the forum are read by staff, trustees and members of Parkinson's UK and are taken seriously. However, the forum is a peer-to-peer discussion space and moderators try to keep their posts to a minimum. If you have ideas about the forum and would like a response, please email them to [email protected]. We have set up a Forum Advisory Panel to help shape the future direction of the forum and would still welcome new members. If you are interested in taking part, please let us know.
Thank you for all your contributions to this thread and for your ideas.
As moderators we work hard to try to ensure that the forum remains a vibrant and welcoming place for all people affected by Parkinson's but to do this we also need your help. The forum Guidelines were drawn up together with forum users. Following these guidelines should help everybody to find what they need from this space:
http://www.parkinsons.org.uk/default.aspx?page=8686
The contributions that you all make to the forum are read by staff, trustees and members of Parkinson's UK and are taken seriously. However, the forum is a peer-to-peer discussion space and moderators try to keep their posts to a minimum. If you have ideas about the forum and would like a response, please email them to [email protected]. We have set up a Forum Advisory Panel to help shape the future direction of the forum and would still welcome new members. If you are interested in taking part, please let us know.
Ali J
I started this thread as somewhere to post ideas about the forum's future, what likes and dislikes there are but predominantly to get people thinking forward , to bring about a positive forum.
I have absolutely no idea what you are referring to - I can not see any specific reference to you in any of the contributions so I would suggest that if you have concerns that you put them through the right channels. If you want a break from the forum then that is your choice - I've had a long break from here for reasons already stated and that is what I am trying to mend.
Breeze
I started this thread as somewhere to post ideas about the forum's future, what likes and dislikes there are but predominantly to get people thinking forward , to bring about a positive forum.
I have absolutely no idea what you are referring to - I can not see any specific reference to you in any of the contributions so I would suggest that if you have concerns that you put them through the right channels. If you want a break from the forum then that is your choice - I've had a long break from here for reasons already stated and that is what I am trying to mend.
Breeze
sorry breeze for messin ur thread up i already relize now i posted in the rong thread ,sorry x