Post removed.
Post removed.
I've just had an amazing tongue-lashing from Jacqui (Cooke), who runs the PD Junction forum, and is known on THIS forum as "cutiepie"! (On her own forum she's known simply as "Jacqui", email: markjackie AT hotmail DOT co DOT uk ).
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unseccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unseccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
Glad to see you're not worried about the important things.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Have a nice day!
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Have a nice day!
New logo. Nice.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
I've just had an amazing tongue-lashing from Jacqui (Cooke), who runs the PD Junction forum, and is known on THIS forum as "cutiepie"! (On her own forum she's known simply as "Jacqui", email: markjackie AT hotmail DOT co DOT uk ).
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
I've just had an amazing tongue-lashing from Jacqui (Cooke), who runs the PD Junction forum, and is known on THIS forum as "cutiepie"! (On her own forum she's known simply as "Jacqui", email: markjackie AT hotmail DOT co DOT uk ).
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again.
At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer......
Beware, folks, and keep your secrets to yourself. I know much about Jacqui too, but I wouldn't sink so low as to drag it out in an argument.
New logo. Nice.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
New logo. Nice.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Meanwhile I've just had an unbelievable tongue-lashing from Herr Jacqui (Cooke), who runs the PD Junction forum, and is known here on THIS forum as "cutiepie"! (On her own forum she's known simply as "Jacqui", email: markjackie AT hotmail DOT co DOT uk ). She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again. At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer...... Beware, folks, and keep your secrets to yourself. I know much about her too, but I wouldn't sink so low as to drag it out in an argument.
Still the CE tells the charity press there's been minimal dissent to his plans.
Still his dismal phone-in failure hasn't been replaced.
Still no platform for exchange of views.
Still no return calls or emails to legitimate questions.
Still no response to the investigations he promised on REAL forum upgrades.
Still no answers to the formal complaints about him currently with the Trustees.
Still the Mail carries details of this ongoing saga.
Still the £200,000 re-branding cannot be justified.
Still the CE collects c. £140,000 pa of our hard-earned contributions.
Still the PDS remains a laughing stock.
Meanwhile I've just had an unbelievable tongue-lashing from Herr Jacqui (Cooke), who runs the PD Junction forum, and is known here on THIS forum as "cutiepie"! (On her own forum she's known simply as "Jacqui", email: markjackie AT hotmail DOT co DOT uk ). She's recently started ejecting members from HER forum without giving a reason, just like here. Mind you, as she's a close friend of the PDS's Chief Exec Steve Ford, and also knows all the PDS forum moderators very well, could there be a link.....?
Also unsurprising perhaps was the fact that when the CE had his "members' phone-in" fiasco recently - which hundreds of members unsuccessfully tried to get through to - Jacqui was one of the FOUR members who DID get through successfully. Now what are the chances of that?
Anyway, she disabled my ID without giving a reason, so I asked her why. She started off politely, but still didn't give a reason, so I pushed her a bit and she got aggressive. Still no reason, though, so I asked again. At this point she lost her temper and the REAL Jacqui spewed forth with a string of invective the likes of which I hadn't seen or heard for several decades. Naturally she did all this via "instant messaging" so there wouldn't be any record kept, but I didn't know you could fit so many "F" and "C" words in one sentence! Not to mention some utterly vile and very personal abuse of a very private nature drawn from her knowledge of my dopamine agonist past which I confided to her last year.
Not a very responsible or pleasant way for a relatively young woman to behave towards a much older male PD sufferer who is bed-bound most of the time. Face of an angel, mouth like a sewer...... Beware, folks, and keep your secrets to yourself. I know much about her too, but I wouldn't sink so low as to drag it out in an argument.
APPLE postng on the forum
20042010 - has sorting been fixed 20042010 - has sorting been fixed 20042010 - has sorting been fixed
Hi Compost-It certainly does!
Thanks for the info.
I think someone could do some research as to why.As an ex teacher I would love to know. The parents "Did my head in" as much!
[Duplicate]
Thanks for the info.
I think someone could do some research as to why.As an ex teacher I would love to know. The parents "Did my head in" as much!
[Duplicate]
It's a miracle!!!!
[duplicate]
[duplicate]
Sorry just noticed e mail address has been removed, anybody interested please e mail me and I will forward it to you.
regards
Glenchass
regards
Glenchass
Hi Jennyb,
I also get an occasional tickly throat,usually coming on all of a sudden.Coughing and having a drink usually works but not before my eyes are streaming.Find it tends to happen more when ive been talking a lot.I assume it is pd related in a similar way to swallowing probs.
All the best
Titan
I also get an occasional tickly throat,usually coming on all of a sudden.Coughing and having a drink usually works but not before my eyes are streaming.Find it tends to happen more when ive been talking a lot.I assume it is pd related in a similar way to swallowing probs.
All the best
Titan
[Post removed]
Posted by front-end 21 June 2010 13:49
Posted by front-end 21 June 2010 13:49
Thank you for all the responses and the discussion on the ‘What do you think?’ thread. What seems clear is that having the forum remain whole as currently is a priority for many.
What also seems clear is that there is still some confusion about when or why we remove posts and what can be expected from the moderator.
A good response to this might be working together to draft a set of user guidelines for the forum together.
You may already be aware of the Forum terms and conditions which you agreed to when you registered for the forum. However, these are a set of rules which are quite formal. Take a look here: http://www.parkinsons.org.uk/forum_policy.aspx
User guidelines on the other hand, are a set of… well, guidelines that deal with forum etiquette and lay out principles for how we relate to each other on the forum. They should be easy to read and accessible. Most importantly, forum users should feel that they are something you agree with and can stand behind.
Are there rules that you think could help the forum to become an even more supportive and friendly space?
What kind of interaction do you value most on the forum?
What sort of guidelines might have encouraged you to post for the first time?
Is welcoming new users a priority for us?
Here are some other forum guidelines that you might want to take a look at:
Acrobat users forum:
http://www.acrobatusers.com/community/forum_guidelines/
Breast Cancer Care:
http://www.breastcancercare.org.uk/forum/viewtopic.php?f=2&t=25601
The Guardian
http://www.guardian.co.uk/community-standards
Channel 4
http://www.channel4.com/community/help.html
I look forward to hearing your ideas on this.
Ezinda
What also seems clear is that there is still some confusion about when or why we remove posts and what can be expected from the moderator.
A good response to this might be working together to draft a set of user guidelines for the forum together.
You may already be aware of the Forum terms and conditions which you agreed to when you registered for the forum. However, these are a set of rules which are quite formal. Take a look here: http://www.parkinsons.org.uk/forum_policy.aspx
User guidelines on the other hand, are a set of… well, guidelines that deal with forum etiquette and lay out principles for how we relate to each other on the forum. They should be easy to read and accessible. Most importantly, forum users should feel that they are something you agree with and can stand behind.
Are there rules that you think could help the forum to become an even more supportive and friendly space?
What kind of interaction do you value most on the forum?
What sort of guidelines might have encouraged you to post for the first time?
Is welcoming new users a priority for us?
Here are some other forum guidelines that you might want to take a look at:
Acrobat users forum:
http://www.acrobatusers.com/community/forum_guidelines/
Breast Cancer Care:
http://www.breastcancercare.org.uk/forum/viewtopic.php?f=2&t=25601
The Guardian
http://www.guardian.co.uk/community-standards
Channel 4
http://www.channel4.com/community/help.html
I look forward to hearing your ideas on this.
Ezinda
I feel for the families who have a member suffering from P D, and realize that especially if the patient is living at home, there are so many needs to be met, and life can become quite challenging at times.
I need to let you know that as far as nutritional meals are concerned, there is an organization which can help. Meals on Wheels are non-profit, and deliver these meals free of charge to those who do not have the resources, and to those who can pay, a minimal fee is charged. You can find out more on www.mowglobal.org
I need to let you know that as far as nutritional meals are concerned, there is an organization which can help. Meals on Wheels are non-profit, and deliver these meals free of charge to those who do not have the resources, and to those who can pay, a minimal fee is charged. You can find out more on www.mowglobal.org
having problems getting drugs in my area - pharmacists having to beg and scrounge on phone to suppliers - all types of meds - but someone is making a packet - all about profit margins - massive ones - panorama highlighted the gross dishonesty of smith kline glaxo in week regarding diabetes drug - for me pduk are not nearly vocal enough in voicing our concerns - they are to much intertwined with the medicine firms - at glasgow conference the event will be largely paid for by drugs firms - professors will talk of their research into earlier treatments - i know money is needed for research sometimes but it is getting out of hand - drugs firms will soon have us over a barrel - unless drugs companies sort out supplies - put patients trully first before profit margins & simplify labels & make test data true and transparent pduk would be wise to not court these sinister people in white coats .