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Hi all.
Further to my previous post, are there are any poor folk out there who have experienced severe DA/OCD behavioural changes (either first hand or in someone close), who would be interested in exploring with me the possibility of setting up a campaign?
Its aim would be to raise the profile of the whole DA issue sufficiently high to GET THINGS DONE. The campaign would be accountable to no-one except its members, and anyone employed in the pharmaceutical industry, medical professions or the media would be excluded from membership.
[u]CAMPAIGN NAME[/u] (Open to slicker suggestions!):
Campaign for the Recognition and Avoidance of DA OCD Side Effects (CRADOSE).
[u]DRAFT OBJECTIVES:[/u]
“To achieve 100% understanding amongst neurologists and other medical staff, as well as current and newly diagnosed patients and their relatives & carers, of all the risks associated with Dopamine Agonist medication, to ensure that no more innocent and defenceless patients can become the unwitting victims of OCD and other severe behavioural changes.
“Such mental disturbances have been shown conclusively to frequently result from taking DAs, and medical professionals whose actions, inactions, negligence or omissions result in such terrible human suffering should be held to account both in terms of legal liability and their professional registration.
"Failure of a consultant to ensure that a patient being prescribed DAs is properly monitored at all times would constitute medical negligence, and no patient who cannot be so monitored should ever be prescribed DAs.
“Also to identify and assist those already trapped in this terrifying and bizarre world, and to ensure they are transferred to a safe alternative drug regime as quickly as possible.”
P/M me if you're interested.
Ray.
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hi Ray
I fully support your proposal, its about time these professionals were held to account. A good starting point would be for everyone who agrees the need for more openness and accountability, to post their support for your proposal on this thread. A bit like an on-line open petition for all to see. So come on folks all it takes is one sentence giving your support.
I fully support your proposal, its about time these professionals were held to account. A good starting point would be for everyone who agrees the need for more openness and accountability, to post their support for your proposal on this thread. A bit like an on-line open petition for all to see. So come on folks all it takes is one sentence giving your support.
titan
The difference between your version of the Titanic and mine is; Mine was actually based on the Reality of what happened and not on a mis-leading Hollywood version such as yours. I respectfully suggest you are still missing the point of this thread! The question was (against a backdrop of pwp still coming forward in 2010 with NEW horror stories), "Should people be warned about possible dangerous side effects of DA's". Rather than your continual posting telling everyone how good DA's work for you and how lucky you have been! Why not post your support for Rays proposal and help us to raise awareness and reduce the risks going forward of peoples lives being destroyed.
The difference between your version of the Titanic and mine is; Mine was actually based on the Reality of what happened and not on a mis-leading Hollywood version such as yours. I respectfully suggest you are still missing the point of this thread! The question was (against a backdrop of pwp still coming forward in 2010 with NEW horror stories), "Should people be warned about possible dangerous side effects of DA's". Rather than your continual posting telling everyone how good DA's work for you and how lucky you have been! Why not post your support for Rays proposal and help us to raise awareness and reduce the risks going forward of peoples lives being destroyed.
Wouldn’t it be better to present a pre-written sentence for people to agree to by giving their names? (After all, there is bound to be criticism of the way it is worded it if they haven’t had first-hand experience of the side-effects.) But it would have to be their real name, not their username, so you wouldn’t know who had signed and who hadn’t. Many people, like me, wouldn’t want to link their real name to their username.
I have to say that several people on this thread have alienated themselves from anyone who has not experienced side-effects by chasing them off as if they have no right to be there. Not a good move if you want their support!
By the way, I didn’t read Titan’s post the way you describe it; I read it as saying that he is struggling and vulnerable, too – not boasting about how lucky he has been.
I have to say that several people on this thread have alienated themselves from anyone who has not experienced side-effects by chasing them off as if they have no right to be there. Not a good move if you want their support!
By the way, I didn’t read Titan’s post the way you describe it; I read it as saying that he is struggling and vulnerable, too – not boasting about how lucky he has been.
hi Lily,
I assume I'm one of those people you are referring too? People who you believe are alienating themselves by chasing off this thread, those who have not experienced OCD side effects and want to talk about the benefits of DA's.
Over the last few years i have personally seen at first hand, hundreds of people's lives completely destroyed by DA's. Lives destroyed because Experts who are being paid a lot of money failed to protect them. Instead they pay lip service and just want to sweep it under the carpet. I have known many honest and hard working people who ended up penniless, homeless, in prison or tried committing suicide because of a side effect they were not told about. I think it is those people who have been chased away by this forum! Because as the minority whenever they try to talk about the horrors of what happened, more often than not they are shouted down by the majority. I make no apologies for pulling no punches on this subject. Maybe Lily if you had gone through what thousands of DA victims went through without any support or understanding, you might feel differently.
I assume I'm one of those people you are referring too? People who you believe are alienating themselves by chasing off this thread, those who have not experienced OCD side effects and want to talk about the benefits of DA's.
Over the last few years i have personally seen at first hand, hundreds of people's lives completely destroyed by DA's. Lives destroyed because Experts who are being paid a lot of money failed to protect them. Instead they pay lip service and just want to sweep it under the carpet. I have known many honest and hard working people who ended up penniless, homeless, in prison or tried committing suicide because of a side effect they were not told about. I think it is those people who have been chased away by this forum! Because as the minority whenever they try to talk about the horrors of what happened, more often than not they are shouted down by the majority. I make no apologies for pulling no punches on this subject. Maybe Lily if you had gone through what thousands of DA victims went through without any support or understanding, you might feel differently.
I along with other DA victims on this thread have always acknowledged the majority of people benefit from DA's without any major side effects. However the facts state 1 in 6 people experience serious OCD side effects and new victims continue coming forward with their horror stories year after year. So should we continue devoting this thread to a game of ping pong between the effected and non effected or focus our efforts on a campaign to get ALL the relevant professionals to take proper care of ALL patients and to be held more accountable?
Lily and titan, i don't want to play ping pong with you any more, i would rather have you on my side supporting and actively contributing towards resolving this ongoing issue.
Lily and titan, i don't want to play ping pong with you any more, i would rather have you on my side supporting and actively contributing towards resolving this ongoing issue.
Hi Lily,
Thank you Lily for seeing and understanding my postings.You are spot on.
Hi blueeyes47,
I am not boasting,just trying to convey that people are being warned,people are being more vigilant.
I applaud you,Ray and others for the awareness you impart on this forum.
I,m getting by on Da's,but this does not mean i and others are not struggling or vulnerable.
I am a potential victim,i come here for support and to be supportive.
I understand,empathise and am behind anything that minimises potential harm to others,
I don't agree with people being told where,what and how they should post.This is off putting for new arrivals to the forum.
My Hollywood version was a follow on from a theme you started.Again i reserve the right to post in any format of my choosing.
Shall we put aside the ping pong and have a game of cards instead.Perhaps "Happy families",Patience"(all round).Pull together and hopefully discard the joker(parkinsons).Then maybe we'll hit the jackpot.
All the best
Titan
Thank you Lily for seeing and understanding my postings.You are spot on.
Hi blueeyes47,
I am not boasting,just trying to convey that people are being warned,people are being more vigilant.
I applaud you,Ray and others for the awareness you impart on this forum.
I,m getting by on Da's,but this does not mean i and others are not struggling or vulnerable.
I am a potential victim,i come here for support and to be supportive.
I understand,empathise and am behind anything that minimises potential harm to others,
I don't agree with people being told where,what and how they should post.This is off putting for new arrivals to the forum.
My Hollywood version was a follow on from a theme you started.Again i reserve the right to post in any format of my choosing.
Shall we put aside the ping pong and have a game of cards instead.Perhaps "Happy families",Patience"(all round).Pull together and hopefully discard the joker(parkinsons).Then maybe we'll hit the jackpot.
All the best
Titan
Hi blueeyes
It should be obvious by now that we ARE on your side! We always have been. We believe you. We’ve said it again and again. What more can we say?
I, for one, am hugely sympathetic to your cause and support you wholeheartedly – but in spirit only for the time being.
If you are planning to set up an organised campaign you have a difficult task ahead of you, but I wish you and everyone else all the luck in the world.
It should be obvious by now that we ARE on your side! We always have been. We believe you. We’ve said it again and again. What more can we say?
I, for one, am hugely sympathetic to your cause and support you wholeheartedly – but in spirit only for the time being.
If you are planning to set up an organised campaign you have a difficult task ahead of you, but I wish you and everyone else all the luck in the world.
Hello all, I have been following this thread with interest and occasionally I have presented my personal views. I am one that didnt make it to the boat, mine and my families life has been ruined as all that we worked for has been taken away as a result of medical incompetency. I am also very aware that many people take DA's without OCD being a side effect and that the said drug manages their condition very well.
We should be supporting each other and not playing futile verbal 'ping pong'. I see no reason why we cant all work together. I will be supporting Ray in the fight to make a difference and I would hope that many others feel able to add their support.
We should be supporting each other and not playing futile verbal 'ping pong'. I see no reason why we cant all work together. I will be supporting Ray in the fight to make a difference and I would hope that many others feel able to add their support.
.
[u]CAMPAIGN FOR THE RECOGNITION & AVOIDANCE OF DA-OCD Side Effects (CRADOSE)[/u]
[u]MISSION[/u]
To ensure that no more innocent and defenceless patients can, by being prescribed Dopamine Agonist medication, unwittingly become victims of OCD and other severe and uncontrollable behavioural and neuropsychiatric changes.
[u]Objectives[/u]
To achieve 100% understanding amongst neurologists and other medical staff, as well as current and newly diagnosed patients and their relatives/carers, of all the risks associated with Dopamine Agonist medication, and their potential severity.
To gain 100% acceptance and recognition by all medical professionals that such OCD mental disturbances, at dangerous levels, have now been shown conclusively by both pharmaceutical companies and independent research bodies to result from introducing DA medication in at least 15% of patients. The true figure is likely to exceed 20%.
To introduce a mandatory sign-off by both consultant and patient (and relative/carer/monitor where appropriate) before any DA treatment commences, to confirm that all parties fully understand the potency of DA drugs, and why on this occasion the consultant has chosen them as his/her preferred course of treatment.
To make all parties aware that medical professionals whose actions, inactions, negligence or omissions result in such terrible human suffering will be held to account both in terms of legal liability and professional registration.
To make all parties aware that failure of a consultant to ensure that a patient being prescribed DAs is properly monitored at all times would constitute medical negligence, and that no patient who cannot be so monitored should be prescribed DAs until proper monitoring can be put in place.
To identify and assist those already trapped in this terrifying and bizarre world, and to ensure they are transferred to a safe alternative drug regime as quickly as possible.
To lobby for the introduction of confidential local, and ultimately national, records and statistics detailing numbers of patients, numbers taking DAs, numbers experiencing OCDs and all related data, and make these fully available for public scrutiny.
Revision 1, 24 November 2010
.
[u]CAMPAIGN FOR THE RECOGNITION & AVOIDANCE OF DA-OCD Side Effects (CRADOSE)[/u]
[u]MISSION[/u]
To ensure that no more innocent and defenceless patients can, by being prescribed Dopamine Agonist medication, unwittingly become victims of OCD and other severe and uncontrollable behavioural and neuropsychiatric changes.
[u]Objectives[/u]
To achieve 100% understanding amongst neurologists and other medical staff, as well as current and newly diagnosed patients and their relatives/carers, of all the risks associated with Dopamine Agonist medication, and their potential severity.
To gain 100% acceptance and recognition by all medical professionals that such OCD mental disturbances, at dangerous levels, have now been shown conclusively by both pharmaceutical companies and independent research bodies to result from introducing DA medication in at least 15% of patients. The true figure is likely to exceed 20%.
To introduce a mandatory sign-off by both consultant and patient (and relative/carer/monitor where appropriate) before any DA treatment commences, to confirm that all parties fully understand the potency of DA drugs, and why on this occasion the consultant has chosen them as his/her preferred course of treatment.
To make all parties aware that medical professionals whose actions, inactions, negligence or omissions result in such terrible human suffering will be held to account both in terms of legal liability and professional registration.
To make all parties aware that failure of a consultant to ensure that a patient being prescribed DAs is properly monitored at all times would constitute medical negligence, and that no patient who cannot be so monitored should be prescribed DAs until proper monitoring can be put in place.
To identify and assist those already trapped in this terrifying and bizarre world, and to ensure they are transferred to a safe alternative drug regime as quickly as possible.
To lobby for the introduction of confidential local, and ultimately national, records and statistics detailing numbers of patients, numbers taking DAs, numbers experiencing OCDs and all related data, and make these fully available for public scrutiny.
Revision 1, 24 November 2010
.
Can I suggest a small change
CAMPAIGN FOR THE RECOGNITION & AVOIDANCE OF PRESCRIBED DA-OCD Side Effects (CRAPDOSE)
I think it has more impact?
best wishes with your campaign.
CAMPAIGN FOR THE RECOGNITION & AVOIDANCE OF PRESCRIBED DA-OCD Side Effects (CRAPDOSE)
I think it has more impact?
best wishes with your campaign.
Well spotted Turnip!
Ray I think that what you have written says it all. I'm happy with it, hope others are too.
regards
Glenchass
Ray I think that what you have written says it all. I'm happy with it, hope others are too.
regards
Glenchass
Ray. I would like to be part of your campaign. Something has to be done as this problem is more serious than a lot of people realise.
I am having problems with the Forum website at the moment. I'm not sure if it is my computer or not - when I am clicking on your name nothing is happening so I can't email you. I just wanted to let you know that I am supporting your cause. The more publicity this situation gets the better. If my husband and I had been aware of the dreadful side effects at the beginning when he was prescribed Mirapexin we would have been saved a great deal of misery. The ironic thing is that now he is off it he is so much better - I can't see what benefits it had anyway. If others can be saved from the nightmare that we have been through I am willing to help.
I am having problems with the Forum website at the moment. I'm not sure if it is my computer or not - when I am clicking on your name nothing is happening so I can't email you. I just wanted to let you know that I am supporting your cause. The more publicity this situation gets the better. If my husband and I had been aware of the dreadful side effects at the beginning when he was prescribed Mirapexin we would have been saved a great deal of misery. The ironic thing is that now he is off it he is so much better - I can't see what benefits it had anyway. If others can be saved from the nightmare that we have been through I am willing to help.
.
Hi LL.
I just tried to email you, but your ID is set not to receive P/Ms.
Keep on trying; others are getting through ok.
Ray.
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Hi LL.
I just tried to email you, but your ID is set not to receive P/Ms.
Keep on trying; others are getting through ok.
Ray.
.
Ray, your draft has my backing 100%.
lets see everyone who has posted stories of DA OCD on this forum over the years, post one sentence lending their support!
lets see everyone who has posted stories of DA OCD on this forum over the years, post one sentence lending their support!
Sorry to sound negative, but can I ask a question?
How is it possible for anyone to be ‘properly monitored at all times' (fifth paragraph)?
Also, in the final paragraph, I trust ‘all related data’ would include information about the amount of medication which was being prescribed at the time.
How is it possible for anyone to be ‘properly monitored at all times' (fifth paragraph)?
Also, in the final paragraph, I trust ‘all related data’ would include information about the amount of medication which was being prescribed at the time.
My understanding of somebody "being probably monitored at all times" would be;
Every Neurologist should be made to conduct an initial consultation with the patient to establish suitability for DA's and do a risk assessment of potential for OCD side effects. This must also involve a family member who would be present. Furthermore the Neurologist should then ask a serious of questions (with family member present) at each subsequent appointment and medication increase to keep on top of the situation. Remember there is no way you will ever come up with a bullet proof method, however something like what i describe has to be better than what currently happens.
Regarding Ray's Draft Mission Statement, I'm not sure its wise to try and come up with the definitive Statement here on the forum with everyone just lobbing in questions. Surely the best way forward is to at least agree the principles of is it worth doing? If the answer by is yes then maybe a small group of effected and non effected pwp, can take it off line and work through the detail. Once agreed they could then report back with a final copy and a proposal of what to do next.
Every Neurologist should be made to conduct an initial consultation with the patient to establish suitability for DA's and do a risk assessment of potential for OCD side effects. This must also involve a family member who would be present. Furthermore the Neurologist should then ask a serious of questions (with family member present) at each subsequent appointment and medication increase to keep on top of the situation. Remember there is no way you will ever come up with a bullet proof method, however something like what i describe has to be better than what currently happens.
Regarding Ray's Draft Mission Statement, I'm not sure its wise to try and come up with the definitive Statement here on the forum with everyone just lobbing in questions. Surely the best way forward is to at least agree the principles of is it worth doing? If the answer by is yes then maybe a small group of effected and non effected pwp, can take it off line and work through the detail. Once agreed they could then report back with a final copy and a proposal of what to do next.
Ray
I'm a 100% behind you too. My o/h was on DA's for one week, and despite having LB he took[u] himself[/u] off the med's and returned to his normal ones re the alarming side effects. It's true that meds affect different people in different ways, but I'm pretty sure after the reaction of one of our GP's in the practice, that the medics [u]are[/u] aware of the dangers of DA's to some people.
The issue regarding monitoring is complex especially for people living alone but I support the view that such patients should not be prescribed DA's at all.
My o/h and I would appreciate lending our support to a prepared online document to the powers that be.
JC
I'm a 100% behind you too. My o/h was on DA's for one week, and despite having LB he took[u] himself[/u] off the med's and returned to his normal ones re the alarming side effects. It's true that meds affect different people in different ways, but I'm pretty sure after the reaction of one of our GP's in the practice, that the medics [u]are[/u] aware of the dangers of DA's to some people.
The issue regarding monitoring is complex especially for people living alone but I support the view that such patients should not be prescribed DA's at all.
My o/h and I would appreciate lending our support to a prepared online document to the powers that be.
JC
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Hi all.
I don't want the issue of the proposed campaign to swamp the rest of this thread, as I believe there's still plenty to be said in general about the dangers of DAs and warning those potentially affected.
So I'm going to set up a parallel thread purely about the campaign, and how to progress from here.
Thanks for your support.
Ray.
.
Hi all.
I don't want the issue of the proposed campaign to swamp the rest of this thread, as I believe there's still plenty to be said in general about the dangers of DAs and warning those potentially affected.
So I'm going to set up a parallel thread purely about the campaign, and how to progress from here.
Thanks for your support.
Ray.
.
Hi
Contributors to this thread might be interested in a new page on the website highlighting a new assessement tool jointly developed by Parkinsons UK and local PDNS to help alert people to the possible side effects of dopamine agonists.
Full details can be found at
http://www.parkinsons.org.uk/advice/publications/treatments_and_therapies/compulsive_behaviour_tool.aspx
Tim
forum moderator
Contributors to this thread might be interested in a new page on the website highlighting a new assessement tool jointly developed by Parkinsons UK and local PDNS to help alert people to the possible side effects of dopamine agonists.
Full details can be found at
http://www.parkinsons.org.uk/advice/publications/treatments_and_therapies/compulsive_behaviour_tool.aspx
Tim
forum moderator