hi golden girl,
I just read the letter and to be honest i am stunned!
How can parkinson's UK ask someone living with parkinson's to become an National Ambassador on one hand, then be expelled FOR LIFE from using the Charities forum as a person living with parkinson's?
If i had not seen the evidence with my own eyes i would not of believed it.
This whole shambles is getting worse by the minute!
I do not know what Ray has done this time.I can only speculate. This has happened to me and MAY,only may, be what he has done again.Quite out of the blue, I received a personal E mail from Ray.It had nothing to do with Parkinson's, but was an attack on my personality and that of my husband. It was aggressive and bullying in tone. To a less robust person it would have been frightening.I did not reply, but sent it straight to the moderators. No mention was made of it on the Forum, but it has made me very,very reluctant to post and I know of others who are also reluctant to do so. Some may have noticed this as at one time I posted daily.His behaviour on this occasion was certainly unacceptable. In a way I felt he wanted to control the nature of the Forum and those who posted.His supporters were probably not treated in this way and are confused and upset by his ban. I said in my E mail to the moderator that I only wanted the letter he sent to put on file but they gave a warning and told him not to contact me again,which he has not done. I am not responsible for his being banned.Surely,there are others that can make his points just as effectively but without the aggression,sarcasm and bullying.
Quote by Luis
"With a history of warnings, final warnings and bans, Ray of Sunshine's posts continued to have a tone which was not helpful in creating a welcoming and supportive community. With the evidence that we had available to us, we had no choice but to decide that his tone and behaviour would not change.
Whilst it is a loss for some of you and perhaps in some ways for the larger forum community, it does also mean that many other people will feel freer to post and share their feelings and opinions. We must bear in mind comments made to us by forum users and the desire for the forum to be a safe place for all. For example:
“I’m quite certain there must be many people who refrain from posting because of the often threatening and mocking tone of this forum.”
“All members should treat each other with respect, whether they gel or not. We all join these sites for advice and support, not to be treated in a rude and derogatory manner.”
“Dominant members whose attitude verges closely to bullying should have their activities curtailed"
Well I was one who when first diagnosed with Parkinsons came here looking for information relating to the DA my consultant was recommending me to take. What i read scared the hell out of me and delayed my decision to take any form of meds for many months. Most of the "sensational" and scary posts i read were written by ROS, so in my particular circumstances he's "information" delayed my medication by many months to the detriment of my health and increased my worry and stress in relation to taking DA's of any type.
Fortunately my PD nurses remarks that nothing ventured nothing gained won the day and i started taking DA's, without I hasten to add suffering any of the horrendous side affects that i have read SOME people MAY suffer from.
I also found some of his remarks and statements very hard to believe, and clearly when one feels a person is seemingly telling lies then that persons whole credibilty becomes an issue, this unfortunetly does not help the cause which in this case is the side affects that some people have suffered from by taking DA's. For those who have suffered from DA's I genuinely feel ROS has done your cause more harm than good, there are members here who give a much more reasoned point of view in their posts, that is also sensibly balanced, informative, friendly, and whose credibility is very much respected, at least by me they are.
Sadly ROS is not one of them and i fully support the admins decision, and also note that this is not the only forum that ROS has been banned from!
In conclusion no individual should dominate a community in such a way that other members old or new feel unable to post without fear.
I sincerely hope the commununity can move on in a positive way and support those who adminster what goes on both in front and behind the scenes, for the health and wealth and benefit of all who suffer.
I'm very pleased that Parkinson UK will continue to support ROS in other ways, should he need it.
"With a history of warnings, final warnings and bans, Ray of Sunshine's posts continued to have a tone which was not helpful in creating a welcoming and supportive community. With the evidence that we had available to us, we had no choice but to decide that his tone and behaviour would not change.
Whilst it is a loss for some of you and perhaps in some ways for the larger forum community, it does also mean that many other people will feel freer to post and share their feelings and opinions. We must bear in mind comments made to us by forum users and the desire for the forum to be a safe place for all. For example:
“I’m quite certain there must be many people who refrain from posting because of the often threatening and mocking tone of this forum.”
“All members should treat each other with respect, whether they gel or not. We all join these sites for advice and support, not to be treated in a rude and derogatory manner.”
“Dominant members whose attitude verges closely to bullying should have their activities curtailed"
Well I was one who when first diagnosed with Parkinsons came here looking for information relating to the DA my consultant was recommending me to take. What i read scared the hell out of me and delayed my decision to take any form of meds for many months. Most of the "sensational" and scary posts i read were written by ROS, so in my particular circumstances he's "information" delayed my medication by many months to the detriment of my health and increased my worry and stress in relation to taking DA's of any type.
Fortunately my PD nurses remarks that nothing ventured nothing gained won the day and i started taking DA's, without I hasten to add suffering any of the horrendous side affects that i have read SOME people MAY suffer from.
I also found some of his remarks and statements very hard to believe, and clearly when one feels a person is seemingly telling lies then that persons whole credibilty becomes an issue, this unfortunetly does not help the cause which in this case is the side affects that some people have suffered from by taking DA's. For those who have suffered from DA's I genuinely feel ROS has done your cause more harm than good, there are members here who give a much more reasoned point of view in their posts, that is also sensibly balanced, informative, friendly, and whose credibility is very much respected, at least by me they are.
Sadly ROS is not one of them and i fully support the admins decision, and also note that this is not the only forum that ROS has been banned from!
In conclusion no individual should dominate a community in such a way that other members old or new feel unable to post without fear.
I sincerely hope the commununity can move on in a positive way and support those who adminster what goes on both in front and behind the scenes, for the health and wealth and benefit of all who suffer.
I'm very pleased that Parkinson UK will continue to support ROS in other ways, should he need it.
I should clarify a point.The moderator asked my permission to give a warning and tell him not to contact me again to which I agreed. I did not want to close my P.M facility and why should I do so.
I'm a bit amazed that ROS has been offered a position with PDUK to forward their awareness campaign. He can be a loose cannon and that's exactly what you DON'T need when discussing this issue with senior decision makers in the medical world.
I know he's passionate, but I don't think he will be effective.
I know he's passionate, but I don't think he will be effective.
Kyloe's post shows exactly the type of veiled attack on Ray's mission to inform and support those on DAs and at risk of developing OCDs . She refers to effects "SOME people May suffer from"(her capitals) as if they might be inventing it.After all my and my husband's dreadful experiences, I find those words offensive.
Ray constantly puts the statistics released by reputable agencies such as The Mayo Clinic, on the forum ,i.e 1 in 4 sufferers on a therapeutic dose, 1 in 3 on higher doses will develop pathological OCDs,
She may have delayed her medication because she was afraid of these very high risks but many more have realised that their life threatening behaviour was caused by them and have come off them returning to sanity. Others have monitored behaviour and been saved before being engulfed by the horrors of OCDs.
It may be frightening but does that mean that sufferers should be left in ignorance?
The detailed descriptions that Ray gives of his own behaviour offers an insight into the nature and scale of the problem.
Does Kyloe mean that because she is one of the lucky 75% Ray should be banned from giving this vital but scary information and support?
We still await an answer to Ali's question.
What did Ray do after his return from suspension that was so horrific it earned him a lifetime ban?
Ray constantly puts the statistics released by reputable agencies such as The Mayo Clinic, on the forum ,i.e 1 in 4 sufferers on a therapeutic dose, 1 in 3 on higher doses will develop pathological OCDs,
She may have delayed her medication because she was afraid of these very high risks but many more have realised that their life threatening behaviour was caused by them and have come off them returning to sanity. Others have monitored behaviour and been saved before being engulfed by the horrors of OCDs.
It may be frightening but does that mean that sufferers should be left in ignorance?
The detailed descriptions that Ray gives of his own behaviour offers an insight into the nature and scale of the problem.
Does Kyloe mean that because she is one of the lucky 75% Ray should be banned from giving this vital but scary information and support?
We still await an answer to Ali's question.
What did Ray do after his return from suspension that was so horrific it earned him a lifetime ban?
Why dont you good people of PUK ,have a little faith in the moderator,yes ,ask for an explanation but accept he"s acting in the best interest of us all, maybe the site will return to its old helpful ways now, instead of infighting.
People who were impacted by the worst aspects of Impulsive and Compulsive behaviour side effects are all very different, and as such communicate their experience in different ways. Some have coped better than others, some maybe express themselves better than others and some occasionally let their anger and frustrations boil over?
I believe ROS behaviour on the forum is sometimes unacceptable. However in my opinion he falls in to the "occasionally lets their anger or frustration boil over" group! Of course i accept that does not give him the right to impose his will on other or to bully other users. However is a LIFE TIME ban for someone who has parkinson's disease really a punishment to fit his crime. Lastly why on the same day this man is banned from using parkinson UK forum, do they send him an email asking him to become their Ambassador for the same cause they just banned him for expressing his views on?
It is a bit like throwing someone off the train for not holding a second class ticket, then immediatily inviting them to join you in a first class carriage!
I believe ROS behaviour on the forum is sometimes unacceptable. However in my opinion he falls in to the "occasionally lets their anger or frustration boil over" group! Of course i accept that does not give him the right to impose his will on other or to bully other users. However is a LIFE TIME ban for someone who has parkinson's disease really a punishment to fit his crime. Lastly why on the same day this man is banned from using parkinson UK forum, do they send him an email asking him to become their Ambassador for the same cause they just banned him for expressing his views on?
It is a bit like throwing someone off the train for not holding a second class ticket, then immediatily inviting them to join you in a first class carriage!
Sorry,Goldengirl but I feel you have missed the point.Nobody is denying that D As can cause devastating side effects. It is not Ray's message that was offensive but his method of delivering it and attacking people to whom he took a dislike,maybe because they are out spoken,as I am, or/and did not agree with him. What gave him to right to try and intimitate me through the personal messaging system? His P.M referred back to a posting I had made several years before, from which he made conclusions about my personality which were offensive and had nothing to do with Parkinson's. Should he constantly be forgiven because he could give out the important message? There are others who can do the same without resorting to bullying tactics.
We have to remember that there is lots of research to show that people often behave in quite a different way face to face than they do when writing E mails.Apologise to anyone who replies to me but will not be on line again until much later.
Ray's last posting was, as Eck say's about welsh road signs and he mentioned the fact that few people living in Wales actually speak Welsh. Not something anybody would get offended by, I'm sure!!
What we all need to take into account here is that we are all different people and present differently.Ray is very knowledgeable on his chosen subject and is very prepared to share that knowledge, I for one learned so much regarding my own compulsive behaviors from him. His attitude is one of abruptness at times but so what, as I said we are not all the same. It's such a pity that Parkinsons UK didn't have the forethought to harness Rays attitude and knowledge and put it to some good use as he is one man who the MP's, medics, ect could not fob off!!!
His absence will be sorely felt and I for one will miss his banter.I do feel that on this occasion he has been violated badly as his 'misdemeanor' was hardly even leveled at any one person.
What we all need to take into account here is that we are all different people and present differently.Ray is very knowledgeable on his chosen subject and is very prepared to share that knowledge, I for one learned so much regarding my own compulsive behaviors from him. His attitude is one of abruptness at times but so what, as I said we are not all the same. It's such a pity that Parkinsons UK didn't have the forethought to harness Rays attitude and knowledge and put it to some good use as he is one man who the MP's, medics, ect could not fob off!!!
His absence will be sorely felt and I for one will miss his banter.I do feel that on this occasion he has been violated badly as his 'misdemeanor' was hardly even leveled at any one person.
last year when i was high on mirpexion ,out me head on the stuff,ray was helpin me to see wot i was doin ,i did not wont to be here if u no wot imean ,and tryed several times to self harm myself cus i could not cope any more with things.im a shamed to sayit now,but i feel now i should open up and say.ray posts and others about das helped me very much ,with help from ray him self,drs and friends i finally got through that dark hole in my life.i recall i was seekin help on the forum to people day and nite ,cryin out i spose at the time for help.im embarssed about it now,but at the time my head was so full ,i did not no wot i was really doin.one mornin i went to sign on the forum to do cafe at 6.30 in the mornin,and i found a message tellin me i had been suspended until further notice.well i fliped,i then was in a total melt down ,i was sittin here had no one ,and felt i was goin to end up goin back in to bad thoughts agin.after 4 calls to the surport team at pduk i finally could speak to the correct person,i was told i had been took off the forum cus they felt i needed a break from it,that i was in a stage of my life that the forum was not a good oplace for me,i remember cryin me eyes out to them on the phone,i was pleadin to let me back on ,explainin it was my life line,they did not understand.all they saw is that i needed medical help and when i was sorted i could return.it took 7 weeks before i was allowed to apear back on ,with in those 7 weeks i was hurtin like hell over it all.i had been bullied on the forum as well,but nothin was done about it ,i got told they had not broke no rules,and yes ,ok fair enough they were ery very clever how they phrased there words.i explained i was gettin pms off people bulin me as well,but the answer to that was ,i can not do nothin about pms its not on the forum ,its off the forum.all i surgest u do is close down u recivein pms.but i explained then that my friends would not be able to speak to me throu,pms,the answer to that was give erm ur email addy .so after all this wot im sayin here is,they did not care about me,how i was gettin bullied,it as like as if they turned there backs on me,and i dont no why.i would try talk to the surport group about it all,and got told that if it had nothin to do with meds or pd related things,they was not goin to talk of it.they just did not wont to no,and i got left kicked in the gutter by erm.i then complained to steve ford about it,cus i had done somuch fundraisin before in the passed,i asked for help he was shocked how i had been treated.i finally buit my self back up agin on the forum and the few people that had been bullin me had disapeared .so wot im gettin at here is,ray helped me get out of a black hole,like he has done to somany people,and i may not be ritin this now if it was not for his kindness and bein so helpful to me.i feel i owe him.and that i was treated like poop by the mods durnin this time ,when i was desperate,were was the help then for me?time has passed and im gettin convidence now,and pduk were very nice to me at stratford,no complaints at all bout erm.but this now wot is happinin to ray ,disgusts me,and brings back all these memorys tome,it like you wonna see the bad in people not the good.and still not got a answer WHY was he banned after bein asked to return back to the forum ,and he has kept his promise.
Looking through the 6 pages of posts I note that 19 people have posted, often repeatedly, in support of Ray being part of the forum and 6 people have posted agreeing with the moderators'decision.
Does this not prove that Ray's valuable support and input outweigh any perceived offense through occasional ill-worded passionate posts.
Like Ali, my husband and I considered suicide as our only way out before Ray provided all the information and support to convince us that the DAs were to blame. This was when our consultant was adamant that the drugs played no part in his secret destructive life.
Those of us who have been rescued from this horror do not believe that anyone on this forum will be able, or dare to,pull people back from the brink of hell as he has done.
That is why these protests are filling page after page on this thread.
We who were helped never contacted the moderators to say how we appreciated his posts. Those who were offended did.
Now you have more complete information will you re-consider your ban ?
It will not help future members if you allow the question " What did he do after his suspension? to go unanswered and then close the thread.
We all want the best forum possible as a lifeline for all those with Parkinson's and their cares.
Those suffering DA induced OCDs need Ray's vast amount of experience, knowledge and passionate support.
Those not affected do not need to read it or get involved. They have plenty of support for their own problems in other threads.
Please, please read the posts, accept that you can see for the first time how he has helped so many and let him back on the condition he keeps to the rules.
I write because I care deeply about fairness and to ensure no-one fails to find all the love and care I found.
Does this not prove that Ray's valuable support and input outweigh any perceived offense through occasional ill-worded passionate posts.
Like Ali, my husband and I considered suicide as our only way out before Ray provided all the information and support to convince us that the DAs were to blame. This was when our consultant was adamant that the drugs played no part in his secret destructive life.
Those of us who have been rescued from this horror do not believe that anyone on this forum will be able, or dare to,pull people back from the brink of hell as he has done.
That is why these protests are filling page after page on this thread.
We who were helped never contacted the moderators to say how we appreciated his posts. Those who were offended did.
Now you have more complete information will you re-consider your ban ?
It will not help future members if you allow the question " What did he do after his suspension? to go unanswered and then close the thread.
We all want the best forum possible as a lifeline for all those with Parkinson's and their cares.
Those suffering DA induced OCDs need Ray's vast amount of experience, knowledge and passionate support.
Those not affected do not need to read it or get involved. They have plenty of support for their own problems in other threads.
Please, please read the posts, accept that you can see for the first time how he has helped so many and let him back on the condition he keeps to the rules.
I write because I care deeply about fairness and to ensure no-one fails to find all the love and care I found.
I suspect why so many have failed to support the moderators is because they are many people who have left and are no longer members of the Forum,having been fed up with the bullying sarcastic replies they got if they posted anything to which Ray disagreed. I rarely even open the Forum now, it was just chance I did today. There are many like me who start to post get a verbal battering and leave. I could tolerate Ray's "robust" replies,found them amusing at times, but many were not robust just rude ............ and in my case he hid behind the PM system to quite out of the blue, insult me and my husband. He blatently flouted the rules on repeated occasions, so what were the moderators to do? Actually,I think the life time ban was long over due.As we get older and wiser we should learn from our mistakes.Ray seemed incapbable of this. I am sure he helped many who were in a desperate state, but in the long run, I think he did the Forum considerably more harm than good.
Quote by English Country Dancer
"Actually,I think the life time ban was long over due. As we get older and wiser we should learn from our mistakes. Ray seemed incapbable of this. I am sure he helped many who were in a desperate state, but in the long run, I think he did the Forum considerably more harm than good."
Unquote.
Sadly I find myelf whole heartedly agreeing with you ECD.
"Actually,I think the life time ban was long over due. As we get older and wiser we should learn from our mistakes. Ray seemed incapbable of this. I am sure he helped many who were in a desperate state, but in the long run, I think he did the Forum considerably more harm than good."
Unquote.
Sadly I find myelf whole heartedly agreeing with you ECD.
Well ECD your wish has come true, as it would appear ROS has indeed been banned for life from using this forum.
For me the last two postings from ECD and goldengirl just about sum up the gap of understanding that exists between the affected and the unaffected. One post being from the partner of someone who experienced the worse aspects OCD side effects and the other from someone who's partner has suffered no such side effects.
ECD if you stepped into GG's shoes and had gone through what she has endured over the last couple of years, then maybe just maybe you would be a bit more understanding? That's in no way any excuse for ROS behaviour, however it might change your current view that ROS deserves to be banned for life!
Regards
bluey
For me the last two postings from ECD and goldengirl just about sum up the gap of understanding that exists between the affected and the unaffected. One post being from the partner of someone who experienced the worse aspects OCD side effects and the other from someone who's partner has suffered no such side effects.
ECD if you stepped into GG's shoes and had gone through what she has endured over the last couple of years, then maybe just maybe you would be a bit more understanding? That's in no way any excuse for ROS behaviour, however it might change your current view that ROS deserves to be banned for life!
Regards
bluey
Actually, Golden Girl, you can make that 7 people agreeing with the moderators now. I’m very pleased that you found ‘love and care’ but many people have found only ridicule and vindictiveness and, to be honest, that’s the last thing you need when you’re struggling with a progressive illness. There must be many people ‘lurking’, like me, not wanting to post for fear of being labeled ‘an idiot’ or ‘spiteful’, as I have been in the past. My crime? Having had the temerity to express my personal point of view about a particular medicine on a thread I started myself.
If that’s not bullying, I don’t know what is. And the sad thing is, the bullying continues in the absence of that man.
If that’s not bullying, I don’t know what is. And the sad thing is, the bullying continues in the absence of that man.
I have posted on this matter and stood back and watched other peoples take on all this,
I came to this forum looking for advise, and the first person to come to my aid was ROS.
I hadn’t a clue about the effects of DA drugs, which were affecting my brother in fact
they took my brother away and left a monster. He had done some terrible things and
tried to hang himself...thank God he was found before he jumped.
His lovely family were broken his wife in a mental hospital as she couldn’t cope
His children scarred mentally and bullied in the town and schools.
The information I received from ROS was priceless and enabled me to help his wife
and children to try understand that Daddy was not a bad man, he was ill made so by the drugs
he was given. My nephew could not get his head around the fact that a Doctor gave his Daddy drugs
to make him this way. Anyway things are a little better now that brother is off the demon drugs but he is up
in court for the second time next week.
Without the knowledge, passion and compassion I received from ROS over the past months I believe we all would have gone under.
Yes, he was dogmatic, he was forceful but he knows his stuff and I for one will always be ever so grateful to the RAY OF SUNSHINE
that came into our lives and offered his help to our family.
I agree with Bluey’s post
Don’t judge anyone till you have walked a mile in their shoes.
I think you should praise ROS, not bury him.
Radz
I came to this forum looking for advise, and the first person to come to my aid was ROS.
I hadn’t a clue about the effects of DA drugs, which were affecting my brother in fact
they took my brother away and left a monster. He had done some terrible things and
tried to hang himself...thank God he was found before he jumped.
His lovely family were broken his wife in a mental hospital as she couldn’t cope
His children scarred mentally and bullied in the town and schools.
The information I received from ROS was priceless and enabled me to help his wife
and children to try understand that Daddy was not a bad man, he was ill made so by the drugs
he was given. My nephew could not get his head around the fact that a Doctor gave his Daddy drugs
to make him this way. Anyway things are a little better now that brother is off the demon drugs but he is up
in court for the second time next week.
Without the knowledge, passion and compassion I received from ROS over the past months I believe we all would have gone under.
Yes, he was dogmatic, he was forceful but he knows his stuff and I for one will always be ever so grateful to the RAY OF SUNSHINE
that came into our lives and offered his help to our family.
I agree with Bluey’s post
Don’t judge anyone till you have walked a mile in their shoes.
I think you should praise ROS, not bury him.
Radz
I cannot understand how some regard the defence of Ray as bullying.
Some people have had their feelings hurt. Some people have had their lives saved.
All by Ray's input as he fights to make the facts about DAs/OCDs known.
Which is more important?
Some people have had their feelings hurt. Some people have had their lives saved.
All by Ray's input as he fights to make the facts about DAs/OCDs known.
Which is more important?
And the sad thing is, the bullying continues in the absence of that man.THIS WAS LAST SENTANCE FROM LILYS POST,SO LILY COULD YOU PLEASE TELL US ,WHO IS BULLYIN WHO?IN MY EYES NO ONE IS BULLYIN NO ONE AT ALL,WE ARE ASKIN FOR A QUESTION TO BE ANSWERED TO US.AND SOME PEOPLE WONT RAY HERE ,SOME DONT,BUT NO ONE IS SAYIN BAD THINGS ABOUT ONE ANOTHER,NO BULLYIN IS HAPPININ ,INFACT I SE THIS THREAD UP LILY AND SO FAR I THINK THAT ALL MEMBERS HAVE SPOKE THERE PICE WELL ON HERE,AND THEN ITS DOWN TO THE MODS TO SAY THERE PICE ,AND TO PLEASE ANSWER OUR QUESTION ALSO