Closing 'open discussion'


#1
Hello Ezinda and all,
I have to say Ezinda and others connected with the decision that you have got it totally in closing down the DA Topic. You are treating us like children in thinking that you know better than we in what is OK to discuss and what is not! I hate the word, but it is so patronizing.
As one who has been recommended by a neurologist to try Mirapexin or Ropinirole I followed the discussion with extreme interest. My emotions were like a roller-coaster as I read of the experiences of PwP and their families with some connection with these medications. One day when I read a couple of positives I was ready to go and see my GP; conversely, when I read of some others adverse experiences they made me back off for the time being. Yes, 'Ray of Sunshines' posts paint a bad picture of what 'could happen', but he was also careful to point out these cases were the minority.
I thought that generally, these discussions were carried out in a civilised, mature, manner compared with some posts in the recent past.
If some people on the forum did not like what was being written, I would say "don't read this thread." May I ask, was there any other influence brought to bear?
I, for one, like making informed decisions about the route to take which come from the whole spectrum. Thanks to the Administrator some of the available information will be now be nipped in the bud. Do you realise the consequences for people like me?
Adrian

#2
Hi Adrian, I read your post with interest I have taken Mirapexin for four and half years, the reports of gambling in the media is true, but hasn't affected me
Mind you I make sure I stay away from gambling sites to be on the safe side
Regards
Gill10

#3
If lots of people are being upset enough to tell the moderators - and it could well be the tone as well as the content - then what are the moderators supposed to do? The ground has been covered over and over again. No doubt it will come up again in the course of time. The content remains for the future use of forum members. I for one nearly reported one post for its tone in regard to another member of the forum's contribution.

#4
Hi Eileenpatricia

It's interesting that you nearly reported one post for its tone in regard to another member of the forum's contribution, to which you were not directly involved yourself, and I just wondered why you felt the need to do this? What I mean is did the person involved tell you directly that they had a problem with the tone but didn't want to complain themselves and ask you to intervene on their behalf, or did you take it upon yourself to presume that they had a problem, even though they wern't complaining themselves - and as such may not have had a problem at all, the only problem being yours??? I'm only asking because I wouldn't want anyone to speak on my behalf without checking with me first, incase they saw things in a different perspective than mine. What one person might perceve as a wrong tone towards me, I might not. Difficult one when your talking about someone elses feelings - unless, as I say they asked you to intervene directly?

Amy

#5
oh and yes alot of people are upset, as I said somewhere else, 4/5ths of the forum against 15th - very democratic :grin:

#6
that should say 1/5 - the line was missing :grin:

#7
I dont know what all the fuss is about.

We should just start a new forum for fearties call, Parkinson's Sugar Mountain. With topics such "Parkinson's is a breeze", "Cant someone make the chemist remove those side effects inserts they put in my tablets box", "Chocolate, I have Parkinsons and I still like choocolate", "Thanks to Parkinson's I'm a Benefits basher and no longer have to go back to work", "How Parkinson's helped sort out my golf swing"

And should the one in a billion squillion chance that they may have a problem they move to the other forum where the rest of us are discussing / helping others with the real life experiences they are going through NOW.

Why on earth is this forum cutting off, what may be someones only tenuous link to others who have had the same/similar experience.

If you dont want to read posts that discuss problems go to Parkinson's Sugar Mountain.

#8
Well just while I'm putting my armour on,first I would just say I don't find posts offensive and i haven't reported any.AS I've posted before i don't have any of the side affects mentioned.I put off medication for a while.but looking back I wish i hadn't I feel i lost 2yrs of my life not being on it.People do need to know what can happen,and then decide the fores and against.I love choc and maybe I'm one of those people being referred to as living on sugar mountain,I just want to get on with my life the best I can and DAs are helping me do this.Isn't everything in life a risk?

#9
Hi All and I would be glad if the Moderator can take my second pont on board as well.

Firstly I really don't understand why people are complaining about other people having a discussion about something that is happening/ happened to them as a result of their parkinsons?? There are other threads about scarey things that havn't been shut down. I count falling down and not having any balance very scarey, and I don't want to read about how this will happen to my partner in the future! My partner is at the beginning, and I really don't want to hear other people's horror stories about what will happen in the years to come. If I open a thread and think oh I don't want to know that - I move onto another thread. I certainly wouldn't ask for that thread to be closed because it scared the hell out of me and I didn't want to know about it, I just wouldn't read it - although I do because sometimes I think the information might be useful to me, if not now maybe in the future.

Secondly and I think perhaps more importantly, and for the Moderator - but I think everyone should hear this - which is why I am not reporting this privately - I myself have had contact with two people who wanted to participate in the thread, who themselves had experience of DA effects, but both told me they were too frightened because of the way people who told their stories were being attacked on the site by people who had not experienced effects from DA's. You have to realise it takes alot to admit what you have done while on these drugs, people doing things out of character and loosing their family and homes are not something these people are sharing lightly, these things are sad and embarrassing and hurt very much, and when some have been brave enough to do this, all they have met with is negative comments about how the drugs couldn't be to blame, how they are blaming the drugs and it's their own fault, and how if they had a problem they should have got it sorted - people don't do things to loose their loved ones and everything they have worked for if they can help it.

My point is, and it's difficult to explain, but basically, there were a band of people who not only got this thread shut down because they didn't like it, but also while the tread was running bullied others into not being able to share their storis because they were scared of being attacked verbally if they shared what was happening to them, which I think is wrong, if you want to talk about how you fell over at the supermarket noone will attack you and say it's nothing to do with parkinsons you must have been drunk!! - but if you say I lost everything becasue of drugs I was taking (which is now a legally proven fact that this happens) people get up in arms, no you didn't, you did it yourself, you can't blame your drugs..........

I think it was unfair that people who wanted to participate in the thread and share their experiences, which was what the thread was about in the first place, was stopped by people who had no business being on the thread themselves and who only read it, as far as I can see, so that they could complain about it - why didn't you just read another thread instead???

What subjects can we discuss on the forum? Everything about parkinsons scares me!!!!!!!!!!! Except chocolate, chocolate doesn't scare me and I love chocolate :grin:, but I thought this was a Parkinsons Forum, not a chocolate forum??? I thought this was a place where I could discuss my experiences and read about other's experiences, and maybe look for help or at least support, from people who had shared and experienced the sadness of a disease that I did not ask to enter my life, but this doesn't seem to be the case - so where do I go for support now?

Amy

#10
Hello all,

You have probably all seen the two messages that we left regarding the Dopamine agonist thread and why it was closed down. We would just like to reiterate that the thread was not closed down because of the subject matter. Again, the fact that it has been left on the site, we feel bears this out. The effects of dopamine agonists have been a constant subject matter on this forum for some time.

The forum has indeed been closed because of the tone which was becoming increasingly harsh.

Amy, you stated in your email that,

“ ...while the tread was running bullied others into not being able to share their storis because they were scared of being attacked verbally if they shared what was happening to them..”

This was similar to some of the complaints we received and was exactly the reason why we closed the forum. We hoped that by responding to complaints by both sides and closing the thread we were acting in the best interests of the forum as a whole.

Best regards,
Ezinda

#11
I just stopped reading the topic as it went on and on. Of course the information about the potential, dangerous side effects of DAs should be there, but ad infinitum? After all nothing new was added after a while. Moderators are doing their job of moderating....

#12
Hi everyone.

I’d just like to thank Amy (who has enough troubles of her own) for explaining how difficult it is to make the decision to “go public” about one’s activities whilst under the influence of DAs.

Whilst considering whether to do so you know you’ll get some flak. Certain ignorant quarters will always claim that NO drug could have THAT powerful an effect. And there will always be ridicule, sniggers, disbelief and cries of “Liar!”. From the voyeurs who like the “juicy bits” there can also even be selective jealousy. In addition there are those who don’t really give a damn about other people’s problems, but just wants something to laugh at and someone to mock. If someone gets hurt in the process, tough.

As all here know, I was out of my head on DAs for 7 years, and lost everything. During the last 9 months of that period I committed a series of frauds to raise cash for my compulsions, and I ended up in court for these after I’d come off the DAs.

All the court needed to do was establish whether it was me who carried out these acts (which I admitted to), and if so whether I was legally responsible. That is, had the DAs rendered me unable to properly understand what I was doing, and that it was wrong? However, although the only DA activities of mine relevant to this case were the frauds over those last 9 months, the experts explaining the neuropsychiatric complexities to the court needed to describe ALL of my odd behaviour over the whole 7 years, in order to demonstrate the DAs’ effects.

Thus the world got to hear about hypersexuality, using prostitutes, cross dressing, violence, police chases, rented Ferraris, etc., and as a result – despite the judge ruling in my favour – I was the subject of a scurrilous 5-page colour spread in the local paper. This included the whole of the front page, with several prominent photos of me. You can imagine the articles: “Ferrari-driving sex maniac wears frilly ladies’ panties while spending thousands of pounds of other people’s money on gambling obsession” and so on.

As a result I haven’t left the house for a year now, apart from for medical appointments. I’ve become a shaky recluse, not daring to show my face. Such press coverage hardly encourages others who’ve suffered to come forward.

#13
I had said just about all I had to say, others still had questions.

Its was the fact fact that there were people on the forum with genuine problems and concerns that they were dealing with now, were cut off to appease peoples sensitivities about how such and such was talking to such and such. I'm bored with Poets corner. I just don't go there. Its easy. If you dont want to read on about something, stop. Were the whingers on da's and couldnt help themselves, or were they just bored and wanted a whinge?

There are tons of pointless drivel in this forum. To stop discussion on an important topic while people were looking for answers to specific questions is just totally wrong.

Lets face it. Long since dead drivel is still open, that just hasn't been complained about.

Glad thats all youve got to complain about.

#14
The thread disappears off our screens anyway if no-one replies. The only reason it stays current is because someone has something to say which is important to them, and posts it.

For all those who know they don't like some of the past entries, or feel the "tone" is getting unacceptable, simple: never open that thread again.

#15
I agree with the comments regarding not reading discussions if you don't want to know about them. I also do not read the poems etc on the forum because they don't interest me. In fact the reason I logged onto the forum in the first place was because of my husband's behaviour. Reading other people's experiences and knowing I was not alone has been a great help to me. I have made two friends who have helped me through a very difficult time. Thankfully my husband is off the DA's now and he looks and feels better than he has for a long time. I, however, still feel traumatised and I know our relationship will never be the same. No-one who has not been through the experience of dopamine dysregulation problems would ever understand how awful it can be and how it can destroy a family. You would not go on a Thalidomide website and say to people who have suffered - "I took those tablets when I was having my baby and he's got all his limbs" would you? Parkinson's is a cruel disease and my heart goes out to everyone who has it but imagine not only having the disease but then reacting so badly to medication that it destroys your life and your family?

I admire ray of sunshine and the others who have "come out" and admitted their behaviour. It cannot have been easy. I hope it helps them to know that they have been of help to others in the same position. I only wish none of us had had to go through it all.

#16
Thank you Libra Lady, appreciated. :grin:

#17
Hi Angel4u

No armour needed, once you are happy and DA's are making your life better - we - and I dare to speak for those who have had bad effects - they can come back to me if they disagree with me :grin: - but we are happy for you - and are happy that DA's are working for you and please god may they keep working for you - as I have previously said I have no problem with DA's as they DO work for alot of people, my only quip is with the 'policing' for those that they dont work for - for the people that they muddle their brain so much that they don't know what's going on around them. But you are proof that they do good - which is great! We don't doubt there are thousands of happy stories like yours, but it doesn't make the 100 stories about lives lost from these drugs any less important to me, as does your live improving mean to you [::biggrin::

Your lucky, every day is a bonus make the most of it.

Amy

#18
Hi kate

You have the right idea, if something bores you you stop reading, which is the point, and let the people who were still interested get on with it.

It's a shame everyone isn't the same as you.

Amy xx

#19
Hear, hear! :grin:

#20
Amy,

I did not report anyone precisely because the post was not about me. As for your other fanciful speculations I wonder what exactly you are getting at? I have not reported anyone. The only private message I have ever sent on this forum or any other for that matter was to you by way of support and by private message as it contained information about myself I did not particulary want published. I shan't be making that mistake again. I was merely saying in my previous post in a roundabout way that some posts would come across as unpleasant and disrespectful of others contributions whoever read them. You wouldn't have to be psychic to form this opinion. If there was another thread about this topic I would naturally switch over to it but as I am interested in the topic I shall stick with it.