About the Forum


#1
I'm bringing this subject forward to another thread ,to make sure it is seen by anyone signing in.
As we know some of our original members have been banned for life ,usually by being baited by others not really understanding the importance of what's being discussed.
Everyone's opinions are important to the author of each thread,and I think we should all remember this.
I think now it's the first birthday of our new forum,it's the time for this to be revised
Please feel free to add your comments whatever your viewpoint is on the subject.
Roz

#2
I have been on this site since it was only an experiment, much longer than a year ago.When I first visited in those very early days before it was in its present form there were some lovely people who helped me enormously to come to terms with the situation.(not that there are not lovely people on now)People who had had P.D for a great number of years but were still leading fruitful lives.As a result of a number of aggressive posts they decided not to post and who can blame them? Why give yourself unnecessary stress?I am pretty sure that people get warnings before they are banned for life.If they continue to be abusive and aggressive they either enjoy it or cannot help themselves, but why should the majority of the Forum users have to put up with it?I can think of a number of examples when members have expressed opinions only to be met with abuse and unhelpful comments of an aggressive nature.Personally,I think if anything the moderators have bent over backwards to be reasonable.If people are warned and they carry on with that sort of behaviour they deserve to be banned.

#3
I would not say they were 2baited",far from it.They just dared to express a different opinion or say how they felt.

#4
We all appreciate what a difficult job it must be for a moderator to keep control of a large number of members who at times seem hell bent on world war three. However, “life bans” do seem over the top. Feelings are bound to run high at times when sensitive topics touch raw nerves. Words spoken in haste are often regretted later and comments made are often interpreted in diverse ways but different members. Accusations of “hurtful”comments may leave the accused bewildered.
Historically the members given life bans are generally the members who have made the most contributions, and for whom the forum plays an important part in their lives.
They are often members with the greatest knowledge to share, as they have often already experienced many of the situations pwp find themselves in, have tried a variety of drugs and experienced their side effects, and have learned to cope as best they can. For a number of reasons, for some people with Parkinson’s Disease the forum is the only way they come into contact with other sufferers. To take this lifeline away can be devastating. They do not have the option to work or go out much and the forum fills a large part of their lives.

It is true that they will not always say other members want to hear. They will tell the facts as they see them. At times statements may seem aggressive and uncalled for. The drugs people are on can also cause them to behave in irrational ways. The question is “Should this be a reason for a life time ban”?
Cooling off periods are sometimes necessary and the moderator's authority to delete posts can cause anger and controversy at times. But life bans seem a bit dramatic. M.P’s can fiddle thousands of pounds on expenses but do not get a life ban on being politicians. Those who have a driving ban following a serious driving offence do not get a life ban, and even murderers rarely get a life sentence that means life.
Life is not black and white we must all try and be more considerate. None of us are perfect but in the real world we cannot just banish those with whom we do not agree.
sejvej

#5
Anyone can disagree with me,I have no objection to that but I do object to personal abuse just because my views differ from theirs.This is a form of bullying with,I would suspect,the aim of shutting me up. How many times does someone have to be warned and giving cooling off periods? We are not dealing with children here but adults who should be responsible for their actions.Besides if they can control themselves for periods of time after a warning they can do so at all times.

#6
I would be interested to know if comments are made by PWP,Or Carer
as there is no doubt,unless you are suffering PD and the effect of the drugs, there is no way anyone can fully understand the changes it makes to us


Roz

#7
So,when you drive erratically and the police stop you, you say "Sorry constable the drugs made me do it." When in a fit of rage you sweep everything off the supermarket shelves you say "Sorry,the drugs made me do it." So P.D, or the drugs are an excuse for any abusive, bad behaviour. In life we have to control our behaviour and can if we know we have to do so, otherwise the consequences would be disastrous. This applies whether we are PWP or not. I know a number of people who have P.D and I am married to one.I have not known them to be anything but polite and considerate.
I note you have brought up the division between carers and P.W.P again.Pity, I thought we were all in this together.

#8
Although my opinion on life bans has not moved in principle, I feel the well expressed arguments on both sides of this debate have made my views a little less extreme. Thank you ECD and Sejvej. Also thanks to Roz for raising the subject. I, too, was a member of the 'old' forum, so recall the forum as referred to by ECD.

As far I am aware, there are two people who have received life bans. I will not name them as I think PDS would not wish me to, so I refer to them as #1 and #2 (banned Nov 2008 and May 2009). I get the feeling that some of this thread's posts refer mainly to #2.

As reasons for life bans are not given out to us, the membership, we are left to piece together the reasons and circumstances and draw our own conclusions. Maybe we listen to the outpourings of the banned, and use our judgement to determine what to believe.

The next paragraph is controversial, not intended to be but I cannot take part in this debate without articulating that which I believe happened. I have avoided identifying the members by name and gender, and have every intention to continue to do so. I am not the only person who knows this and I do not keep records of my MSN conversations.

All I know is that #1 was the subject of very serious allegations going far beyond what has been discussed so far. As a consequence of the ban, #1 has never been able to defend these allegations in public, but strongly defended their innocence to contacts via email, MSN etc.. Another member has admitted to me that there was a conspiracy to get #1 banned, that member stating quite clearly that lies had been told to PDS in support of the allegations. Furthermore, that member said that they never expected a life ban, they thought a temporary ban would have been imposed. Is this life ban fair?

Getting back to points discussed, my opinion is that there have been some very strong opinions expressed in too aggressive manner and Moderators have a duty to deal with these, escalating punishment if warnings are ignored. For the extreme offenders, a temporary ban should be considered.

I believe it is relevant to state that #1 and #2 are PWP, forced to take PD meds, I think it's important to consider that a change of meds regime can have a marked effect on personality, making a life ban extremely unfair.

Finally, a problem which may have no solution and make this thread pointless.. When both these members were active, they were like cockerels in a fighting ring. Unless they can agree to disagree, bury he hatchet etc., they will be on permanent temporary bans. Perhaps they should be asked if they wish to come back, do they wish us to have this debate and can they tow the line.

Grey.

#9
WOW, stirring of the hornets' nest!!!

HI Roz, ECD, Sejev and Grey, long time no write.

I'm sure you'll remember that I was a sometimes supererogatory contributer to the 'old' forum so many moons ago and I remember with fondness, the kind, helpful advice I gleaned from those PwP and their carers who shared their knowledge.

I also remember with a smile those great schismatic debates / altercations / imbroglios that almost caused casus bellii!

May I bring into the debate the term "Freedom of speech"? It seems that the liberty of an individual to be contrary and promulgate is at risk when action such as the 'life ban' is adopted.

May I also surmise that, on the occasion of a driver being 'carved up' or some-one 'jumping' the queue, we have a choice as to how we react. We could choose to become annoyed, threatened, feel bullied or upset, choose to retaliate or choose to 'let it go'. It is our choice how we react and as such must admit our own participation in the process. It takes two to tango or cause conflict.

Today, I'm sitting on the proverbial fence and choosing to see how this debate progresses.

However, on one subject I choose to voice my personal views: that is of the differing stances of PwP and Carers / Partners / Supporters. Of course we are different and are affected differently, only an ostrich would think otherwise! However surely more import should be placed in the mutual benefits each can exchange in 'getting along' with the formidable onslaught of the symptoms of this hideous disease.

PS. Medication has been proven in law courts to affect some people's personalities and their actions whose effects can be reversible once the medication is ceased. Indeed my PD Consultant at Guy's Hospital has made further reaching warnings regarding OCD to me on this subject.

With kind regards, Cecily.

#10
I will accept that medication can affect the personality, maybe by exacerbating traits that are already there or affecting parts of the brain that put a brake on certain behaviour.I have been persuaded by your arguments and perhaps bans should be just increased in length with each offence. We do though get back to the point that as a result of aggression and abuse good people have left the Forum many of them P.W.P. If only the offenders could see that reasoned argument gets their point across more effectively.It is surprising that 2 could not do this as he was considered and I think considered himself a master in the field of language...disappointing.(I do not know why 1 was banned)
Let us have no barriers put up between carers and P.WP. We all have our crosses to bear.

#11
I too feel it inappropriate to ask respondents to state whether PWP or carer. Both are equal victims of this disease and know full well the effects of the meds on either their partner or themselves.

Grey.

#12
Absolutely, Gray. It's really not a question of them and us, and that too was part of the problem.
Everyone is entitled to comment but it went way beyond commenting, with personal derogatory comments which were not helpful, with people feeling threatened, distressed and frightened. I, myself, was reluctant to give my views because of the level of abuse; nor do I feel that this is too strong a term.
By the way, I have Parkinson's so I am therefore an us.
So, I'm behind ECD and Gray here.

#13
i really did not no if to post or not,as many of you are aware since as it was put,no2,was banned,i have still found it difficult to post as aim frightened of writing the wrong thing and members who have strong feelings about this,friends,of no2 i mean,may not like the people who got bullied so much.i don't wont people to get upset,its over now,life goes on,what happened,happened for a reason and everyone can make there own minds up how they feel about life time bans,but they are not taken lightly,it is similar to education,u get warned ,and warned ,you keep going,suspension ,keep going expelled,its similar,if you carry on and on,there is nothing else can be done but ban some one from causing bullying,grief,and anxiety to other members of the forum.i really do like this forum and have made so many friends through it,and its only now that aim starting to feel a little more comfortable to start posting,but trying to watch every word i put,in case i might offend some one,i don't wont that to happen.:smile:

#14
Dear Ali J, You cannot please everyone all of the time.Not everybody will agree with points we make and it would be a very dull Forum if they did, but we can treat everyone with respect even if their views differ from our own. So speak up.

#15
I think there's a clue in the Forum's birthday banner

Thanks to all of you who continue to make this a supportive and welcoming place for new members.

Otherwise, they would have written
Please feel free to post abusive comments and kick people when they're down

#16
Well here we go, I promised myself that I would not get involved but now feel I have to have a say.

I have always thought of this forum as my sanctuary, my private place where I can be me, without thinking, “ what would Phil say, what if the kids new I thought that “ and so on.
It allows me to be subservient and nice to people when the mood takes me, it also affords me the pleasures of being argumentative if I want.


What ever I write, I expect people to take it in, believe every word of it, or if the mood takes them, they can dismiss the lot. What ever the case the same theory stands, freedom of speech, and freedom to listen.

It is so easy to say, I am being intimidated by a,b or c,
But what about,

I am letting 1 2 or 3 intimidated me, and I will not let it happen, and take control of it.

Or why as an adult, with or without Parkinson’s can we not just listen to what is said, and take what we want in and dump the rest.

Why is it that there are so many spineless people about?
We have had so much said of bullying, but is the nobody going to say how bad it is that all the kids in the playground gang up on one person.

I am not trying to say that No1 or No 2
are perfect, But isn’t there a quote that goes something like.

“He who is without sin, cast the first stone”

.and I know I am not free of sin, and that quote is rich coming from me.

We are all individuals

I certainly have had my run ins with them, but I think it is time we all grew up, and took on the responsibility for our actions and words,
Maybe we should set out some ground rules like.
1 don’t take it personally
2 Take a deep breath before you respond
3 Think, WHY is he or she reacting this way

Or we could all just get on with life, and try to remember that Parkinson’s is the b
"Bastard" round here, and lets pick on that instead of each other

Jaylew

#17
Hi Jaylew and all
I thought I'd have my small say (despite only being a mere 'carer').
Not being able to cope when someone makes an insensitive remark doesn't made a person 'spineless' Jaylew. As for taking control of intimidation, many people here are having enough of a battle with their emotions re PD and may not be in a position to take control in their current state of mind.
I also dont agree that all the forum members (or most) have ganged up on no.2 (cant comment re no.1) if that's what your analogy re the playground meant.
Personally Im quite fond of no.2, despite having been upset by some of his comments (particularly ones to me personally). However, I also upset him with some of mine. I didnt realise he had been banned and dont know the reason. I dont like the thought of no.2 or anyone being banned but I do think consideration needs to be given to members who feel unable to use the forum for fear of being upset. Which is worse?

Jaylew, Im not trying to cause a row, just giving my viewpoint. It's good to see you posting and I hope you are getting back on track with your meds. :smile:

#18
hi jaylew,nice to see you on the forum again,i hope you are well.x.:smile:

#19
I have read through both sides of this discussion and one thing stands out: Everyone is treating each other with respect.

After all, isn't this all we are asking for?
It isn't that difficult.


PWP have a great deal to contend with both physically and emotionally and respect for each others feelings must take priority

Once, and only once, I was told by no. 2 that as I did not have Parkinsons I could not possibly know what PWP go through. I agreed but said he could not possibly know the pain of others. I also said I would not rise to his bait. It worked for me and since then we have never had a cross word and the rest has been plain sailing.

I don't agree that members should be banned for life.

There has to be some sort of punishment but banned for life is very harsh.

If the member or members concerned are truly sorry for the upsets they have caused then their membership should be reconsidered after a period of absence.

In the end it all comes back to respect.

I hope I have not upset anyone by my remarks.

I look forward to member's posts as they used to be, full of information and lots of fun.

Take care all of you.

bb

#20
i am not going to be drawn into another horrible discussion but would just like to say that my original objections were regarding the awful way that people were being treated by an individual, the issue of pwp or carers was irrelevant, it was my personal view that you dont treat anyone like many of us were treated regardless of diagnosis and I feel that if you continue to bully and abuse others you seal your own fate.


Dejay