The point of this forum


#1
when I joined this forum I was extremely excited at the prospect of being able to share my joys and woes with fellow PD sufferers and their nearest and dearest. The very nature of PD means that none of us is an adolescent, most of us have worked, earned a living, loved, parented etc. It therefore still amazes me that the people who run this forum continue to treat us like toddlers.
All we want is someone to chat to who is that rare human being: he/she can empathise, and they understand. For me it can be painful enough just to sit at the computer and I must use voice-activated software to write. I would like to be able to concentrate on what matters to me and the people I chat to. This may simply be passing the time of day playing games, it may also be supporting someone who is at the end of their tether, and I mean the end. It could be sharing knowledge about medical stuff.
There are more rules on this forum than in your standard football game and believe me the offside rule is decidedly more understandable.
The result is that instead of feeling more secure in this particular environment I feel at sea. It is not obvious to me who the moderators talk to and at what level. I don't really care.
What I care about, all I care about, is my fellow sufferers and their families.
Can we get on with the job?

#2
I am with you entirely!

This Forum is for all PWP's and carers be they big,small, ugly, pretty, educated or ignorant.

I am sure that everyone here can find at least one person to empathise with.

However, we should treat each other with respect and be aware that we really don't know what makes another PWP tick.

A discussion is an exchange of intelligence whilst an argument is an exchange of ignorance.There are ways of getting your point across without resorting to attack on the person.

Rules are there for all of us and when they are broken on a consistent basis then reasonable action has to be taken for the protection of the majority. There are now many who will not post for fear of ridicule and for this Forum to be meaningful a climate has to be conjured to encourage them to come back.

It would be good if we knew exactly the length of time a ban is for particulr misdemeanours. There is no real justification for a lifetime ban, far better to say 6 months is our maximum and then stick to it when it is imposed.

#3
HI ..MAY I ADD my support to the above views ...clearly members should treat each other with mutual respect born from common decency...however the control of forums is a complex and difficult situation in my previous experience and one where the forum leaders must be seen to be consistently fair...this can be very hard as misinterpretation of posts is easily done without a face to speak the words as they are intended. I certainly dont envy the job of moderators ...they are in a difficult position!!

FINALLY this is a very good site with clear efforts to communicate safely and with sound principles...dont let the danger of BIG BROTHER spoil it ...communication is the key ..and please forgive me if i patronise anyone ...this is never intentional ..but my kids tell me i think i,m still teaching infants at times ....thanks yodapoark

#4
The WHOLE point to this forum is sticking together.

Whatever minor or even major arguments we have, we still have PD!

That will not go away, so we try to deal with it the best way we can.

Sometimes posts can be misunderstood or misinterpreted.

The moderators try their best to keep us in check, and to be fair to them, some of us need it (I include myself in that group).

Lets not forget though, that individuality makes us who and what we are!

It would be a very boring world of automatons otherwise!

Poker :laughing::smile:

#5
This post has been removed by moderators because it does not comply with our forum guidelines.

You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx

#6
This post has been removed by moderators because it does not comply with our forum guidelines.

You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx


#7
This post has been removed by moderators because it does not comply with our forum guidelines.

You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx

#8
This post has been removed by moderators because it does not comply with our forum guidelines.

You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx

#9
the thread reads THE POINT OF THIS FORUM,well the whole idea of a forum is to be able to post ,and feel safe when doin so,rite now,lookin around i do not feel safe.there seems to be more posts deleated than there is posts of people wontin the forum to keep goin for the rite reasons.one thing i do not understand is ,why is it ok for one person to get away with things ,who was banned before years ago ,and now is allowed to come back with out any nowledge to the mods of that experence and allowed to ruin things agin on the forum for others, and then others who only seem to apear when things are goin rong for a dig.this is not how a forum should be run,its now got a bad name puk has ,cus of all this goin on over time.i had my membership papers through the other day and still have not filled them in ,thats how strong i feel about all this goin on .u no me ilove the cafe etc and welcomin people to the forum ,but now agin people are now holdin back from wontin to post,not just my self.does this not tell the mods anything at all.since one member has been allowed to return ,cus there was no good reason for the ban ,another has apeared who was banned for life and is tryin to get the other member to be wound up.people dont like seein this and something needs o be done about it fast this time.or things are goin to go back to how they were few weeks back,hardley any posts cus people disagree strongly how the forum is looked after.ino you have your rules,and rules arnt there to be broken .but im sorry they are bein and nothin is done.so unless this forum gets agrip of it self agin and eyes are actually opened and see wot is goin on ,my membership along with others will not be filled in .and it is a great shame cus we are genuine people who wont the forum to work,not cause poop.please think about it,and get the forum back to bein a nice place to post agin ,people dont wont to be lookin at all this ,agin.

#10
Ali,
it wouldn't be the same without you . You are sooooooooooooo supportive. The difference in tone between any of your postings and those I have recently replied to is oceans wide.
For some reason which only cheap psychology can fathom, there seems to be an alpha male thing going on. Either some people do not understand the nature of the written word without the face to go with it or they do understand and are simply vicious. Just recently I felt before getting back some street credibility. You really help this happen. Ali, do not lower yourself to the behaviour of others, it does not become you.
Anyway how are you? Are you home and are you feeling better?

#11
thankyou for your post mrs.t:smile:im home for now, im afraid,not good,and strugglin,but gettin on with things,cus thats wot i gotta do no,its the mater of the survival i think.comin on to the forum for surport though ,help with stuff ,does not seem to be here,i try to give out my surport to everyone,but there always seems to be fites goin on here at the mo,its perthetic,people need to learn theres more to life than this childish stuff,and the forum is not the place to do it,cus its brinin it down big time.anyway ,hope you ok mrs.t take care x:smile:

#12
I joined this forum in,I believe, 2010. I was nervous, never having done such a thing before. I was made so very welcome, received much good advice, comfort and support. A true gift from people whom I was unlikely to meet in person.I also enjoyed some fun, and that is not to be underestimated for people newly diagnosed with Parkinson's Disease, or indeed for their partners.
I would like to think that I gave something back - at least I tried to do so.
But now I simply find it exhausting and non-productive. That may well be just the progression of my Parkinson's Disease. But it does not feel like that to me, because ,as well as knowledge I believe that feelings are important.
I honestly do not care too much about the name of the poster - it is the content of the post that matters. It should be helpful,informed and non-combatative. Funny helps too.
Informed debate is a highly regarded (by some) method of "moving forward". You do not move forward by resurrecting old feuds. Nor do you do it by silencing the combatants. One answer would be to ask them to state their case in terms that will be understood and not offend.
It is such a great shame.
It may be pertinent to mention that I felt the need to ask my carer to check this post for possible cause of offence

#13
I would like to say that my earlier deleted post did not break any forum rules and neither did kyloes (the mods confirmed this to me by email). they were politely written but referred to other's that had broken rules and were therefore removed to prevent upset.

I feel strongly that some forum members are making unfair judgements on people's characters that are misguided. The written word can be easily misconstrued. For those that have formed an opinion on ANYONE on this forum, can I please urge you to let the past remain in the past.

When moderators lift a ban, they do so to allow ALL people with PD and their carers to be able to have access to a much needed support forum. They dont make these decisions lightly so please respect this.

It really upsets me when people are so quick to form an opinion on a person that they do not know based on the words of other members.

PLEASE keep an open mind and allow this forum to be available for everyone. As most people affected by PD are aware, mood swings and paranoia are an everyday problem to have to cope with along with the physical symptoms of PD.

I feel its time for a little more tolerance.
Best wishes to all users of this forum
Carrot

#14
I hear you.

#15
Many of the people who use this forum are confused and depressed and may be in need of a little cheering up. For that reason I always try to remain upbeat and optimistic and occasionally a little jokey. Nonetheless, I always try to confine my humour to the "social club" and "creative corner" sections. On the odd occasion I may have made a remark that was perhaps a little insensitive I have always apologised. Perhaps the forum moderators could allow us to be our own watchdogs. Yes, we are responsible adults. At least I think the great majority are. I shouldn't think anyone intent on causing mischief and mayhem would go to the trouble of joining a discussion forum to do it.

Chris

#16
Hi I have been shocked and upset by all arguing
When I was dx last year I had never used or typed on a computer but the support I received on the forum kept me going
We all have bad days and like Carrot was saying paranoia is a pd sympton and sometimes the things we write (ie ME) are
taken wrongly
I also think theres nothing to be gained in going over old disagreements
Lets all move on and get on

#17
I go back to my original posting. It was a plea for joined up behaviour. I am guilty of losing my rag but frankly it does nothing for my frame of mind to be treated like a toddler: we are not dealing with healthy people: maybe a little more tolerance would go long way. If this is truly a forum for us,we have to be allowed on certain postings to have our ongoing soap opera. Maybe I am out of order.

#18
the main prob with this forum is to do with some people not allowin other people to get on with wot they wonna say with out havin a dig at erm cus they got a prob with erm from long time ago ,and wont let things just go .its perthetic in my mind,they need to grow up and when it happins the posts now are startin to be deleted and people taken off the forum for a coolin down period,yes ok i agree there now some thing bein done with forum,but wot mods need to look at is why it is happinin and deal with the cituation that way ,cus keep goin like this is not workin.a slap on the hands and off we go agin .i think its down to the inderviduals them selfs ,its them that need to get a grip ,and stop windin others up,moderaters can do so much ,but wot else is there to do than ban agin people,and have massive probs then with conflict.so just let the forum flow like it should do,ino people have issues,and i no they have med probs ,but im hundred percent positve this all has to do with just hate,and goin back years ,and like i said it is childish ,perthetetic.there is lot of people who wont to come on the forum and not see all this rowin and posts deleated,it stops others from enjoyin them selfs,or findin information which they dexpretly need.i really dont no the answer to all this ,apart from sayin the inderviduals,please lay off one another ,take ur fruid off the forum .:smile:

#19
I don't post on here very often as I'm always slightly nervous in case I say the wrong thing and upset anyone.:flushed:
MY husband was DX about 15 years ago and life could be tough at times sometimes I feel like running away ( I wont though ).
The point of the forum for me is when I read other people's posts I can see I'm not alone.
Regards Heather :grin:

#20
welcome heather,lovley to see you, i hope now the forum will calm down and your able to post were ever you like ,and feel comfortable doin so .big hugs x:smile: