Dopamine agonist threads


#1
There are currently a number of threads running at the same time on the topic of Dopamine agonists. While the continued postings on this issue reveal how important it is for everyone with Parkinson’s--whether they are currently taking these drugs or not--for the good of the flow of the we are asking forum users both the limit the number of threads dealing with this issue and be conscious of the tone that these posts have been taking.

Two separate streams of opinion on this issue have formed and that is as we would expect of a conversation on a topic this important. One stream would like to highlight the benefits that the drugs has had for them and the other, the damage they have caused in their lives.

On a number of occasions posts have gone too far and we have written to forum members asking them to soften their tone and to avoid attacking others. The current situation whereby we are doing this case-by-case cannot continue.

Please re-read to forum guidelines which are available in the Forum rules section below or here: http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=forum-rules&topic=forum-guidelines

Remember that all are entitled to their opinions and should not feel afraid to voice these or feel attacked while on the forum, no matter how important the issue. And we do recognise that this issue is of fundamental importance.

At the same time, the forum is for discussion on a range of issues affecting people with Parkinson’s—including some which are very important to people coming to the community for the first time. It should not be consistently dominated by one topic.

We hope that forum users will respond to this positively and take the initiative to make changes to improve this community for all.

#2
Hear, hear

#3
Dear Ezindia,

I'm disappointed by your comments and in particular your view that there is a problem with this forum being dominated by Dopamine Agonist threads!

The passion shown on this forum, along with the number of threads on risks vs benefits of taking DA's, is just the symptom and not the problem! The problem has been created by some health professionals and drug companies paying lip service to the potential risks for FAR TO LONG. I feel sure if DA side effects had caused 1 in 5 people to go blind or lose limbs, rather than recklessly gamble or become sex addicts, then PUK would not be telling people not to have too many threads on the subject.

#4
Dear Ezindia,

I'm disappointed by your comments and in particular your view that there is a problem with this forum being dominated by Dopamine Agonist threads!

The passion shown on this forum, along with the number of threads on risks vs benefits of taking DA's, is just the symptom and not the problem! The problem has been created by some health professionals and drug companies paying lip service to the potential risks for FAR TO LONG. I feel sure if DA side effects had caused 1 in 5 people to go blind or lose limbs, rather than recklessly gamble or become sex addicts, then PUK would not be telling people to RESTRICT the number of threads on this subject.

#5
It has dominated to the point of omg not again,I did not join the membership again because its the same old same old....and I understand its ruined lives but as a newbie it put me off, and the points made.

#6
Valid points, Ezinda.

If anyone is bored with the topic surely they can read? Topic headings are very clear about their contents: if you don't want to read or contribute, don't read!

R.

#7
at the risk of sharing the fate of mercutio, the debate between the pro and antis is completely non-productive. no-one is going to change their mind. even when they agree the two sides carry on arguing. the only solution is a balkans one - each side has their own thread and the other side keeps out, no matter how agrevating the other side seem. there is no debate going on just a trade of insults and repetition.

hopefully i dont get to say the line:
'aaargh! A plague on both your houses. They've made worm's meat of me.'

but i expect i will.

#8
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Hi.

Normally the topic gets sidelined for a week or two, and then a newbie turns up and says something like:


"I'm a carer for my O/H who has PD, and we've just joined the forum. My God I'm glad we did. We've read back all the DA threads and THEY EXPLAIN EVERYTHING we've been going through.

"Nobody warned us about the possibility of such devastating drug side effects, but my O/H has changed totally over the last 12 months. He's started gambling heavily and has lost all of our savings. He's also started womanising, and has become very demanding in bed. He denies it all of course, and gets very aggressive when I ask questions.

"These threads HAVE OPENED OUR EYES TO DA/OCDs, and we'll be discussing with our Neuro a.s.a.p."


I receive messages like that on a regular basis. THAT is why I believe it's essential to keep a warning thread alive.

Ray.

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#9
Ray, the point you make is extremely valid. Because over the last 5 years nearly every Dopamine Agonists thread has ended up with either; the thread being shut down, or forum members falling out over the issue, or even in some cases members being banned. Then after a few weeks of calm, someone new to this forum will post a story along the lines of "nobody warned me of the side effects" or "my partner has destroyed our marriage since taking DA's" etc etc. Then the debate takes off again.............

In my opinion closing down or restricting discussion about warning people of the risks is completely wrong. By doing this you are only dealing with the symptom and not the cause of this issue. If PUK want to see less forum space taken up on this issue, then hopefully the meeting 13/01/11 to discuss how we better inform and monitor the potential risks will be a major priority for them.

#10
all i will say on this thread is ,when i was hig on das ,and i was goin out me mind wonderin wot was happinin to me body and mind,well the das helped me pd ,but side effects got me crazy real bad which im very ashamed of but was out of control,i could not understand wot was goin on ,but if it was not for the dopamine threads i would not of been abkle to try and understand wot goin on with me,im goin round and round here rabitin ,wot im trying to say is if it was not for that thread expalinin things tome bout the da it made me relize i was goin mad with it and people havin a go at me all the time tellin me i was ill in the head from das i could not see that i was out of it,but i read and iread this thread over and over and evetualy i did somethin about it cus then i could see i was daungerous tome self ,and it was the forums thread which made me see sence it was drummed into me so i say please let the threads stay cus there is some of us out there that these drugs do effect and we need to no wot mite happin

#11
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Well said, Ali & Bluey.

There are scores (probably hundreds) of people, including you and me, whose lives have literally been saved by this forum.

I for one will NOT wind up the debate as long as I believe there may still be folk out there who need our help or information.

Ray.

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#12
theres bound to be people who are totly confused wots goin on here ,newbies worrin wot the heck,but really we need 2 threads one for people who wont to talk sensible about there effects with das and one for people who wont to talk sensible about das there way ,but not to attack each others threads,but is that livin in a fairy tail waorld ,cus we all no we have the odd ones who will attack each others threads and then we all end up in such a mess ,arguin and then moderaters get in volved and thers a huge debate goin on.i dont really no the answer to this prob ,but it so easy tome dont read the thread if it says effects of das if u dont agree ,or if u do read it dont post hold back the bad words u feel bout it.u see if u have not been on the other side bin effected so bad that u wont to take ur own life or self harm ,or seellur house for gamblin ,u should keep off the thread.simple.:smile:

#13
I am sure that most people have now found the research findings on Impulse Control Disorders and Parkinson's, reported in the Parkinson's Disease Foundation Newsletter, where it says that impulse control can be associated with other Parkinson's medication, although the problems seem greater with D As.
Whilst I agree that people taking Parkinson's medication should be aware of Impulse Control Disorders and the devastating effects on the sufferers and their family, I have reservations on what is happening on the Forum. This Forum has become dominated by the subject.It is understandable and admirable if ones life has been turned upside down,ruined even by I.C.D, that one wants to prevent others suffering in the same way. The Forum,however being dominated by the subject means that many people coming to the Forum for help and support become frightened and may not take medication that might help them. I would suggest that those who want to help others give a one line warning to new members, where appropriate, and give advice on where to find more information.This is an important subject and should be treated with respect and somewhat more restraint,so that new PwP are not frightened from taking medication. Goodness knows, most of us are frightened enough at the time of diagnosis without this Forum adding to the stress.We should be holding the hand of the newly diagnosed not making them **** scared.

#14
so when a new person comes along, ray can suggest they visit his thread and lily can suggest they visit hers and everybody with a strong opinion (about 6 people) stays in their own patch.

this may need to be policed.

it may be nazi/fairyland, but otherwise there wont be any new people because there wont be a forum worth visiting.

i know its more intractable than northern ireland and south africa but something needs to be tried.

#15
I don't / didn't want to mention any side effects to anyone. It was a thoroughly embarrassing episode that I have been trying forget, however I am still paying for it 4 years on and will be paying for the next 18 years.

How can you look at a post such as "Relationship in turmoil" and not be moved to respond.

To say nothing isn't an option.

You speak of fear of the medication, try the fear if you AND your partner suffer the side effects.

I'd go further, to say nothing would criminal.

I had the experience of being censored after someone expressed the view that suffers of the side effect must have been pre-disposed to self destruct and behave in such a vile manner towards their loved ones.

I told the person what I thought and my post was deleted while theirs stood.

I can only think of two groups of people who would benefit from not knowing and that's the bookies/gambling site owners and one other, well, I better go no futher i case I'm censored again.

#16
i dont think there is any need for censorship, just temporary separation of the two sets of opinion to let things calm down. i dont think there is actually all that much disagreement in fact, just difference in emphasis plus, understandably, a great deal of emotion.
people in trouble should be able to get advice from those who have experienced it without interference from those who have not.
newbies should be offered access to both emphasises and be allowed to make up their own mind without having to wade through repetitive arguments and name calling.

#17
How about the advice given to me by a Parkinson's health care professional who after hearing of how I had conducted myself while on DA's suggested that I was lucky and went on to tell how others had lost twice as much along with their homes and got divorced.

Lucky was how I felt walking out of court with a debt arrangement rather than face bankruptcy. Lucky is how I feel about my wife's love for me and that she didn't give up on me.

So there you have it, next time a newbie expresses concern that they or their loved one goes mental, we give them a positive, non scary, phrase; "it could be worse", "there there never mind", "really, I cant imagine why that would be, cos the drugs are ruddy marvellous", "he/she must be pre-disposed to such behaviour, lucky you found out now rather than later" or "you were lucky" and go on to tell how others had lost twice as much along with their homes and got divorced.

I am lucky, others have faired a lot worse than I. However the pain I inflicted on the one soul I hold most precious haunts me still will ensure I can never shut up about it. Forget money/bricks and mortar. I doubt my wife will truly trust me again and I doubt I can ever trust myself.

Sorry this is the kind of detail we don't want to see.

Replace the above with "I was a tad out of sorts, if you feel a tad out of sorts "

Talking of Nazi's wasn't the ignoring of what was going on the reason for WW II happening in the first place?

I'd like to just add, that through this forum I found I could forgive myself, allow my wife to forgive me and allow myself to smile again.

You probably hear a lot more " he scared me "'s than "thank you for giving me understanding and giving me my life back"'s. That's the whole crux of this. (in my opinion).

It's like asprin - people report they have headaches taking it. (probably why they are taking a painkiller)

Parkinson's UK Forum - people report being frightened. (probably why they are reading post in search of answers)

Parkinson's UK Forum - people upset me when I made an ignorant assumption or generally talking out my backside. (fill this bit in yourself, I might be censored).

#18
Oh the irony!

Ezinda started this thread with an appeal to forum users “both to limit the number of threads dealing with this issue and be conscious of the tone that these posts have been taking”. In doing so, she unwittingly started the fifth thread concerning DAs.

There was no threat from Ezinda to close down the existing threads and her message did not favour one viewpoint over the other, so why the defensiveness from some posters?

(And don’t worry, Eck: your message doesn’t scare me, it doesn’t upset me and I have [u]never[/u] reported anyone. However, there must be a way of getting your point across without accusations.)

#19
Lily,

The second from last paragraph (Ezinda posting) makes a statement regarding the forum, that "it should not be consistently dominated by this topic". The tone of which feels a bit threatening to me! This was also accompanied with a link reminding people of the forum T&C's.

I think its a mistake for PUK to have made the statement which they did, because the number of threads on this forum is only the symptom of the real issue. Just look at two of the most recent postings on this subject from NEW forum members. Golden girl on 27/12/10, thanking Ray and others for giving the advise her Doctor failed to do. Then there is the posting from May you never... on 23/12/10 saying how glad she was to have come across the threads because she was concerned by the information given by her Doctor.

Maybe if ALL health professionals and drug companies took proper responsibility for advising and monitoring the potential risks, there would not be a need for any threads on this subject.

#20
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Hi.

I'm not sure how 3 or 4 threads (out of hundreds) can be considered to be domination.

The only reason some might feel the DA/OCD issue is dominant is because it always seem to be present as a "Latest Activity". And the only reason the subject appears on that list is due to the fact that someone has posted on that particular thread within the last 12 hours.

Surely if so many members have something to say on the subject on such a regular basis that's a good thing isn't it? And as we've said, if you're not interested in a thread don't read it - the thread headings are perfectly clear as to the contents.

Ray.

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