Sorry, that should read 6.9% of L-Dopa takers.
hi Lorna,
I think my and others contribution to the threads on Dopamine Agonists OCD risks, has served its purpose now in finally bringing PUK to the table on this subject. Hopefully the meeting to be held in London on the 13th January, will be the starting point on a journey to minimise the risks of pwp being unwittingly impacted by OCD side effects in the future.
Whilst i don't agree with turnips extreme view of 2 sets of Gladiators chopping bits out of each other, i do however think his phase "Ludi incipiant" is how one or two forum members have behaved with regard to there contribution on this subject.
Glenchass, the opening sentence of your last posting is the KEY to resolving this issue. Because i also prescribe to the view that's its PUK's role and duty to protect as well as support pwp, and its about time they took this issue seriously, rather than telling people to reduce the number of forum discussions about it.
Ray would i be right in saying; if 17.1% of people taking DA's and 6.9% of people taking Levodopa have suffered OCD side effects, thus making a total of 24%. That means almost 30,000 out of a total of 120,000 people with PD living in the UK have been impacted by this issue? If my assumptions are correct, then That's why this issue needs more focus.........
I think my and others contribution to the threads on Dopamine Agonists OCD risks, has served its purpose now in finally bringing PUK to the table on this subject. Hopefully the meeting to be held in London on the 13th January, will be the starting point on a journey to minimise the risks of pwp being unwittingly impacted by OCD side effects in the future.
Whilst i don't agree with turnips extreme view of 2 sets of Gladiators chopping bits out of each other, i do however think his phase "Ludi incipiant" is how one or two forum members have behaved with regard to there contribution on this subject.
Glenchass, the opening sentence of your last posting is the KEY to resolving this issue. Because i also prescribe to the view that's its PUK's role and duty to protect as well as support pwp, and its about time they took this issue seriously, rather than telling people to reduce the number of forum discussions about it.
Ray would i be right in saying; if 17.1% of people taking DA's and 6.9% of people taking Levodopa have suffered OCD side effects, thus making a total of 24%. That means almost 30,000 out of a total of 120,000 people with PD living in the UK have been impacted by this issue? If my assumptions are correct, then That's why this issue needs more focus.........
Hi,
Well,all this talk about Titan gods and gladiators is an interesting diversion from the real issue.I won,t take the Titan references or playing games personally.After all,that would be ridiculous.I woulden't want to reinforce the view of the DA control committee that all those taking DA's are suffering from side effects and don't even realise.
As for attending meetings.Well its bad enough trying to have a say on the forum without being lynched.During a meeting,what would be the point,my insignificant views will be shouted down the same by the same heavy mob who patrol the forum attacking anybody who is seen as having a view not in keeping with their own.
I have noted the word compensation consistently cropping up on this thread.I find this significant,agendas behind agendas is how i see things.I loathe politics,too much deceit.Real peoples views not being considered important.Facts and figures and percentages being thrown up all the time.Those like myself,benefiting from or considering starting DA's may as well abstain.Low and behold if anybody turns up in defence of DA's.The real DA Emperors sit on their thrones and give a constant thumbs down to to the likes of me.
Titan.
Well,all this talk about Titan gods and gladiators is an interesting diversion from the real issue.I won,t take the Titan references or playing games personally.After all,that would be ridiculous.I woulden't want to reinforce the view of the DA control committee that all those taking DA's are suffering from side effects and don't even realise.
As for attending meetings.Well its bad enough trying to have a say on the forum without being lynched.During a meeting,what would be the point,my insignificant views will be shouted down the same by the same heavy mob who patrol the forum attacking anybody who is seen as having a view not in keeping with their own.
I have noted the word compensation consistently cropping up on this thread.I find this significant,agendas behind agendas is how i see things.I loathe politics,too much deceit.Real peoples views not being considered important.Facts and figures and percentages being thrown up all the time.Those like myself,benefiting from or considering starting DA's may as well abstain.Low and behold if anybody turns up in defence of DA's.The real DA Emperors sit on their thrones and give a constant thumbs down to to the likes of me.
Titan.
I think it would be good for all to attend face to face and realise we all got something in common and instead of dividing, unite.
.
Hi all.
PUK was already running a campaign to raise awareness of impulsive and compulsive behaviour as a side effect of PD drugs. Noting the massive interest in the subject on this forum, and our plans to embark upon a similar campaign ourselves, they were kind enough to invite us to attend their meeting. Attendees will include medical professionals, PUK staff and representatives from relevant bodies, as well as us.
Their meeting is NOT about the relative merits of different drugs, whether patients have any previous gambling history, how to claim compensation or the subtle nuances between vaguely different opinions or theories. Nor about egos, in-fighting or paranoia. It is simply about raising awareness. Amongst patients, carers, families, nurses, consultants, researchers, pharmaceutical companies, pharmacologists, the media and - of course - the general public.
Surprisingly, one of the hardest groups to convince that these drugs CAN take over your mind completely, relieve you of free will and the ability to understand the difference between right and wrong and turn you into a monster is those PD sufferers who already take drugs such as DAs successfully, with no ill effects. To them, these medicines are wonder-drugs, and they understandably want to keep them, and will naturally argue vehemently to prevent them being withdrawn.
But I would ask everyone to join together as a single coherent group. No-one is intent on banning these drugs - they work perfectly well for 76% of us. All we want to do here is maximise awareness, to prevent anyone slipping unwittingly into OCDs, and enable us to identify those who are currently in the OCD trap and who have never been identified as such - possibly by deliberate evasion, possibly through ignorance.
It is essential we get our message across, backed up by experience and acquired knowledge, and that we are seen as a serious, educated, understanding and representative group whose input is valuable and relevant, and who need to be kept involved in the PUK campaign from now on.
Ray.
.
Hi all.
PUK was already running a campaign to raise awareness of impulsive and compulsive behaviour as a side effect of PD drugs. Noting the massive interest in the subject on this forum, and our plans to embark upon a similar campaign ourselves, they were kind enough to invite us to attend their meeting. Attendees will include medical professionals, PUK staff and representatives from relevant bodies, as well as us.
Their meeting is NOT about the relative merits of different drugs, whether patients have any previous gambling history, how to claim compensation or the subtle nuances between vaguely different opinions or theories. Nor about egos, in-fighting or paranoia. It is simply about raising awareness. Amongst patients, carers, families, nurses, consultants, researchers, pharmaceutical companies, pharmacologists, the media and - of course - the general public.
Surprisingly, one of the hardest groups to convince that these drugs CAN take over your mind completely, relieve you of free will and the ability to understand the difference between right and wrong and turn you into a monster is those PD sufferers who already take drugs such as DAs successfully, with no ill effects. To them, these medicines are wonder-drugs, and they understandably want to keep them, and will naturally argue vehemently to prevent them being withdrawn.
But I would ask everyone to join together as a single coherent group. No-one is intent on banning these drugs - they work perfectly well for 76% of us. All we want to do here is maximise awareness, to prevent anyone slipping unwittingly into OCDs, and enable us to identify those who are currently in the OCD trap and who have never been identified as such - possibly by deliberate evasion, possibly through ignorance.
It is essential we get our message across, backed up by experience and acquired knowledge, and that we are seen as a serious, educated, understanding and representative group whose input is valuable and relevant, and who need to be kept involved in the PUK campaign from now on.
Ray.
.
Titan, why do you keep trying to present yourself as the poor victim who is being bullied. In nearly all your posts you seem to be wanting to establish some sort of "morale high ground" by saying your always respectful of others viewpoint despite being on the receiving end of insults yourself. Yet in just the last post alone your refer to those who campaign for greater awareness of DA side effects as;
"The DA Emperors"
"The Heavy Mob"
"The DA Control Committee"
"Having Agenda's behind Agenda's"
"Having a Personal Agenda"
In addition to this previously you referred to us as, "Bitter people who just want to build Walls of Hatred towards DA's. Also on more than one occasion you accused us of placing "Damming postings" aimed at DA's full of Percentages and Stats. I lost count of the number of posts in which you accuse us of having a Personal Agenda and wanting to campaign for DA's to be banned.
I was not surprised when you said you wont be attending the meeting on 13th January, stating your reasons as being that somehow you would be attacked by the so called "Heavy Handed Anti DA Mob!" It seems you would prefer to continue the debate via the forum and hidden behind user ID's? On the other hand i will be attending the meeting in person because i prefer to have a grown up face to face debate with all he relevant stakeholders in attendance. My reasons for going to the meeting are well documented and not hidden. I don't have any hidden agenda's, nor do i go to the meeting with any Lynch Mob in toe. Furthermore i don't want DA's banned in any way shape or form! All i want to see is increased ownership and greater accountability from those professional bodies who are supposed to looking after our interests.
Titan, i do hope you will change your mind and come to the meeting on the 13th January. If you do, then i promise to shake you hand before the meeting, listen and respect your input during the meeting and regardless of the outcome, buy you a beer after the meeting.
So what do you say, shall we formally now close the the "Games" and kick off 2011 with a new page?
Happy New Year
Bluey
"The DA Emperors"
"The Heavy Mob"
"The DA Control Committee"
"Having Agenda's behind Agenda's"
"Having a Personal Agenda"
In addition to this previously you referred to us as, "Bitter people who just want to build Walls of Hatred towards DA's. Also on more than one occasion you accused us of placing "Damming postings" aimed at DA's full of Percentages and Stats. I lost count of the number of posts in which you accuse us of having a Personal Agenda and wanting to campaign for DA's to be banned.
I was not surprised when you said you wont be attending the meeting on 13th January, stating your reasons as being that somehow you would be attacked by the so called "Heavy Handed Anti DA Mob!" It seems you would prefer to continue the debate via the forum and hidden behind user ID's? On the other hand i will be attending the meeting in person because i prefer to have a grown up face to face debate with all he relevant stakeholders in attendance. My reasons for going to the meeting are well documented and not hidden. I don't have any hidden agenda's, nor do i go to the meeting with any Lynch Mob in toe. Furthermore i don't want DA's banned in any way shape or form! All i want to see is increased ownership and greater accountability from those professional bodies who are supposed to looking after our interests.
Titan, i do hope you will change your mind and come to the meeting on the 13th January. If you do, then i promise to shake you hand before the meeting, listen and respect your input during the meeting and regardless of the outcome, buy you a beer after the meeting.
So what do you say, shall we formally now close the the "Games" and kick off 2011 with a new page?
Happy New Year
Bluey
Morning Ray,
I feel compelled to respond to the third paragraph in your piece , written earlier.
Again, we in this particular group are frustrated that you say things like , 'we are the hardest to convince , concerning the goal of upping awareness of the risks of o.c.d.'
There are many who wholeheartedly agree with this aim. I'm referring to people taking D.A.'s and not having O.C.D. problems.
Time and time again , we state this , but we are just not believed , it is very hurtful.
Why should we go to all the effort to get to the London meeting , only to be discredited yet again.
I, like many others, take meds. from the D.A. group , they are not perfect , at the moment , I'm dealing with very bad nausea. I'm about to try to go to work, and I feel rotten.
Reading that paragraph in your piece Ray , didn't help.
I just don't know what more I can do.
I feel compelled to respond to the third paragraph in your piece , written earlier.
Again, we in this particular group are frustrated that you say things like , 'we are the hardest to convince , concerning the goal of upping awareness of the risks of o.c.d.'
There are many who wholeheartedly agree with this aim. I'm referring to people taking D.A.'s and not having O.C.D. problems.
Time and time again , we state this , but we are just not believed , it is very hurtful.
Why should we go to all the effort to get to the London meeting , only to be discredited yet again.
I, like many others, take meds. from the D.A. group , they are not perfect , at the moment , I'm dealing with very bad nausea. I'm about to try to go to work, and I feel rotten.
Reading that paragraph in your piece Ray , didn't help.
I just don't know what more I can do.
If you take any PD drug and you are ok on it ie you dont exhibit any tendencies that impact on your life, fantastic!
I'm really pleased for you!
Maybe youre the answer to the side effects.
However there are a significant number of people who suffer from the problems created by the drugs (as accepted by the drug companies) and these that deserve help and support and in some cases compensation.
If you dont believe they experience such problems or If you dont think they deserve help thats your prerogative.
If its to state that the drugs are not to be withdrawn I dont have a problem with that.
Since there is no alternative to taking the drugs then the answer lies in learning to live with the consequences of taking them and adequate support to overcome the problems created.
The discussion should be as to how best we can achieve that support.
Leyther
I'm really pleased for you!
Maybe youre the answer to the side effects.
However there are a significant number of people who suffer from the problems created by the drugs (as accepted by the drug companies) and these that deserve help and support and in some cases compensation.
If you dont believe they experience such problems or If you dont think they deserve help thats your prerogative.
If its to state that the drugs are not to be withdrawn I dont have a problem with that.
Since there is no alternative to taking the drugs then the answer lies in learning to live with the consequences of taking them and adequate support to overcome the problems created.
The discussion should be as to how best we can achieve that support.
Leyther
Hi Lorna.
Please don't take offence, there's certainly nothing personal intended. Each of us has their own experiences, some good, many bad. Let me explain.
You know what I've been through. My life over the past decade has been open for all to study in great detail, and my story and photos have been in most of the national newspapers and several local ones. I haven't received a penny from anyone.
Most of these stories have been retold in such a way as to portray me as either a reckless gambler trying to wriggle out of a mountain of debt, a philanderer who's been caught out, or some sad old transvestite trying to blame his perversion on his medication. All reports DID outline the case against DAs, the fact that 2 professors testified on my behalf and the judge's ruling in my favour, but most either suggested or implied that I myself was using the DA/OCD issue to "escape justice". As a result of the local publicity I haven't left my house, apart from for medical and legal appointments, for around 18 months now.
Of those members of the public, medical professions and other PD sufferers in my area and elsewhere, there is one group which regularly expresses the most doubt in my own genuineness, the ability of DAs to have such powerful effects and the likelihood of the brain being able to totally relinquish control of the individual (to the extent that one genuinely can't distinguish right from wrong). This group is without doubt (honestly!) those who themselves take DAs without any problems, and get enormous benefit from them. These people (not necessarily on this forum) are EXTREMELY hard to convince. That is just my experience (sorry!), and of course may not match yours.
However, there's no reason why these experiences should affect the forthcoming meeting. Its purposes is to raise awareness, and I'd have thought we'd all be looking for a similar outcome.
Ray.
.
Please don't take offence, there's certainly nothing personal intended. Each of us has their own experiences, some good, many bad. Let me explain.
You know what I've been through. My life over the past decade has been open for all to study in great detail, and my story and photos have been in most of the national newspapers and several local ones. I haven't received a penny from anyone.
Most of these stories have been retold in such a way as to portray me as either a reckless gambler trying to wriggle out of a mountain of debt, a philanderer who's been caught out, or some sad old transvestite trying to blame his perversion on his medication. All reports DID outline the case against DAs, the fact that 2 professors testified on my behalf and the judge's ruling in my favour, but most either suggested or implied that I myself was using the DA/OCD issue to "escape justice". As a result of the local publicity I haven't left my house, apart from for medical and legal appointments, for around 18 months now.
Of those members of the public, medical professions and other PD sufferers in my area and elsewhere, there is one group which regularly expresses the most doubt in my own genuineness, the ability of DAs to have such powerful effects and the likelihood of the brain being able to totally relinquish control of the individual (to the extent that one genuinely can't distinguish right from wrong). This group is without doubt (honestly!) those who themselves take DAs without any problems, and get enormous benefit from them. These people (not necessarily on this forum) are EXTREMELY hard to convince. That is just my experience (sorry!), and of course may not match yours.
However, there's no reason why these experiences should affect the forthcoming meeting. Its purposes is to raise awareness, and I'd have thought we'd all be looking for a similar outcome.
Ray.
.
Hi Ray of sunshine,
I am relieved when you say the meetings purpose is to raise awareness.I agree that we are looking for the same outcome there.
blueeyes47,
I like the friendly blueeyes.I too would shake your hand,and also buy you a drink.It is hard to see the real person behind the postings on this issue.Its a shame to continue arguing,frustrations clouding issues,when we are all in the same boat.
You are probably right about the meeting,but to be honest am not good at social gatherings.If i was,i think we would probably get on well.I will close the games with a happy new year to you and indeed all that use this forum.I hope 2011 will indeed kick off with a new page.
All the best,
Titan.
I am relieved when you say the meetings purpose is to raise awareness.I agree that we are looking for the same outcome there.
blueeyes47,
I like the friendly blueeyes.I too would shake your hand,and also buy you a drink.It is hard to see the real person behind the postings on this issue.Its a shame to continue arguing,frustrations clouding issues,when we are all in the same boat.
You are probably right about the meeting,but to be honest am not good at social gatherings.If i was,i think we would probably get on well.I will close the games with a happy new year to you and indeed all that use this forum.I hope 2011 will indeed kick off with a new page.
All the best,
Titan.
Hi Ray,
Just home now , and saw your reply. I take on board all you've said and truly sympathise with how life has been for you , then and now.
We agree on the ' O.C.D. Awareness Target,' certainly. I hope for this outcome along with yourself.
For all the things we've wished for in the last few months , may they be achieved.
I wish you now , a good New Year, a future which carries on getting better, and everything you desire for your self and Debbie.
Kind regards.
Lorna.
Just home now , and saw your reply. I take on board all you've said and truly sympathise with how life has been for you , then and now.
We agree on the ' O.C.D. Awareness Target,' certainly. I hope for this outcome along with yourself.
For all the things we've wished for in the last few months , may they be achieved.
I wish you now , a good New Year, a future which carries on getting better, and everything you desire for your self and Debbie.
Kind regards.
Lorna.
i would love to be at that meetin ,but it london
Anything specific you want raised, Ali?
ive got quite a few issues i would like clear up ray ,and a few from other members of the surport group by me,who to elderly to travel
If you'd rather discuss things with someone neutral, email Sachin.
R.
R.
yep good idea x
Why argue the issue is not about who believes or doesn’t in the good agonist therapy can and does do for the majority.
The tragedy is the devastating impact they can trigger in individuals and the damage that goes beyond their actions, forced to reveal, because when the crisis erupts they have reached a point of no choice ,enjoyment the pleasure seeking overides compulsion controls what you do and is not enough, the need is more discovery inevitable
In the clinical encounter with nurse or neuro, revelation is not easy and when it comes,what relief comes with it already wives children friends employment, innocent and undeservingly caught up in a problem created by medicines that are prescribed to help.
The problem is real and complex,a long term management, initiative is needed to support the consequences. For the majority realisation only comes with the inevitability of discovery,by then much damage is done and acceptance and its horrors are forced adding to the burden of all that is PD
We need positive support programmes,not just removal/reduction in meds.
Recovery and living well with illness is the goal we all need to have to aim and sustain our hope for the future, coupled with prevention and detection strategies and new drugs to balance the undesirable triggers and side effects to our complex brain chemistry is a realisable target
I am fortunate an agonist maximum dose user of 6 yrs. they cause me some problems, but I have a quality of life, thanks to those drugs. Yes that could change. I am educated and aware. I am not blind to or disbelieving of the plight of those who suffer the unfortunate catastrophy of behavioral problems triggered by these medicines.
We all have different medication needs,different responses to those meds..but treatment options are limited ,we have few choices,Im aware and grateful. for what those meds do,but I dont take it for granted, My story could be different tommorow.
The meeting on the 13th is not about indivuduals,but it is commendable that some are prepared to reveal so publically and honestly intimate private details of life with agonists .The compensation most seek must surely be, to be believed at last and promote action, understanding, education awareness a way forward.
Argue with one another if you must and you lose not just to meds. The truth is the professionals in the clinical arena and industry need our guidance not conflict our stories good bad and ugly will help future support and control of the agonist issue.I trust that beyond the meeting,selection of patient representatives will be made to progress the issue forward with credibility
The tragedy is the devastating impact they can trigger in individuals and the damage that goes beyond their actions, forced to reveal, because when the crisis erupts they have reached a point of no choice ,enjoyment the pleasure seeking overides compulsion controls what you do and is not enough, the need is more discovery inevitable
In the clinical encounter with nurse or neuro, revelation is not easy and when it comes,what relief comes with it already wives children friends employment, innocent and undeservingly caught up in a problem created by medicines that are prescribed to help.
The problem is real and complex,a long term management, initiative is needed to support the consequences. For the majority realisation only comes with the inevitability of discovery,by then much damage is done and acceptance and its horrors are forced adding to the burden of all that is PD
We need positive support programmes,not just removal/reduction in meds.
Recovery and living well with illness is the goal we all need to have to aim and sustain our hope for the future, coupled with prevention and detection strategies and new drugs to balance the undesirable triggers and side effects to our complex brain chemistry is a realisable target
I am fortunate an agonist maximum dose user of 6 yrs. they cause me some problems, but I have a quality of life, thanks to those drugs. Yes that could change. I am educated and aware. I am not blind to or disbelieving of the plight of those who suffer the unfortunate catastrophy of behavioral problems triggered by these medicines.
We all have different medication needs,different responses to those meds..but treatment options are limited ,we have few choices,Im aware and grateful. for what those meds do,but I dont take it for granted, My story could be different tommorow.
The meeting on the 13th is not about indivuduals,but it is commendable that some are prepared to reveal so publically and honestly intimate private details of life with agonists .The compensation most seek must surely be, to be believed at last and promote action, understanding, education awareness a way forward.
Argue with one another if you must and you lose not just to meds. The truth is the professionals in the clinical arena and industry need our guidance not conflict our stories good bad and ugly will help future support and control of the agonist issue.I trust that beyond the meeting,selection of patient representatives will be made to progress the issue forward with credibility
Well said, thank you.
Hi to all.
My first post on this forum; I Hope it ends up somewhere sensible.
I'm 62 and have been diagnosed with Parkinson's disease for nearly three years. So far I've had it fairly easy. My physical symptoms are more or less controlled by 3 X Madopar 125MG, 1 X Requip XL 10mg and 1 * Mirtazapine 15MG.
I discovered this forum yesterday when looking for information about a problem that has been worrying me since November.
For about a year I'd been increasingly compulsively looking at pornography on the internet. Then one day in November I realised that what I was looking at was really quite horible. Until that time I'd told myself it was ok, it was consensual activity; all sorts of excuses. Whatever, I realised then that I was operating in areas that were about things I shouldn't be looking at.
I realised I was out of control.
Since yesterday, reading the posts about other people's experience of Dopamine Agonist behaviour, I can understand better what might have been happening to me.
Once I realised how bad the things I was looking at were, even though they were on the open internet, I began to worry about whether I'd been accessing illegal pictures. I looked at some legal-advice websites and the answer seems to be "maybe". Since then I've been panicking every time a car drives up my quiet street as I fear the police are coming for me.
Does anybody reading this post have any experience of the issues involved here? I really could do with some help.
Regards to all,
Parkiman
My first post on this forum; I Hope it ends up somewhere sensible.
I'm 62 and have been diagnosed with Parkinson's disease for nearly three years. So far I've had it fairly easy. My physical symptoms are more or less controlled by 3 X Madopar 125MG, 1 X Requip XL 10mg and 1 * Mirtazapine 15MG.
I discovered this forum yesterday when looking for information about a problem that has been worrying me since November.
For about a year I'd been increasingly compulsively looking at pornography on the internet. Then one day in November I realised that what I was looking at was really quite horible. Until that time I'd told myself it was ok, it was consensual activity; all sorts of excuses. Whatever, I realised then that I was operating in areas that were about things I shouldn't be looking at.
I realised I was out of control.
Since yesterday, reading the posts about other people's experience of Dopamine Agonist behaviour, I can understand better what might have been happening to me.
Once I realised how bad the things I was looking at were, even though they were on the open internet, I began to worry about whether I'd been accessing illegal pictures. I looked at some legal-advice websites and the answer seems to be "maybe". Since then I've been panicking every time a car drives up my quiet street as I fear the police are coming for me.
Does anybody reading this post have any experience of the issues involved here? I really could do with some help.
Regards to all,
Parkiman