No apology needed AB.....you are completely on the right track as far as I am concerned...and I totally agree with all in your (a) – (e) thoughts.
Radz xx
Spam,
It has been proven both in civil law ("on the balance of probability") and the far stricter criminal law ("beyond all reasonable doubt") that a proportion of Parkinson's patients who are given dopamine agonists WILL suffer major obsessive compulsive disorders as side effects. Also that some of these will be so serious as to completely destroy families, marriages and careers, and that many good, honourable people will lose all their assets and get into irretrievably massive debt. I have seen this happen with my own brother in this past year. Many members on this forum now recognises and acknowledges this scenario. (THERE is the REAL proof). It is also acknowledged that on several occasions suicide has resulted, fortunately for my brother he was found before he tried hanging himself in his garage.
It has further been accepted in court that dopamine agonists can and do override the patient's sense of moral responsibility and honesty to the point where they cannot even understand the concept of right and wrong. And inevitably the patient becomes totally addicted to their new interest(s), and unable to break free.
These facts alone in my oponion should have every branch of the media up in arms, crusading on behalf of these innocent victims, who even without all this tragedy are faced with a grim Parkinsonian future. There should be uproar. Organisations like PUK should be shouting from the rooftops for the whole world to hear. Charities should be organising funds for both compensation and civil lawsuits. Yet, if you were to ask 100 people in the street what they thought of the situation I'd be staggered if more than 1 knew what you were talking about. I admit I was in ignorance until I did all my research.
Given the above, there is clearly no question about the validity or sufficiency of the evidence, and I fail to understand why you perceive the issue in this way. The ONLY disagreement, if there is one, is as to how big the proportion is. By using research data pertaining to NON-Parkinsonian patients (who, for their ailment, may only need 1% of the dose a PD patient might require) the drug companies cleverly manipulate their misinformation to imply that the proportion (which we now KNOW to be 24%, if not more) is whatever they want it to be (e.g. 1% of 24% would give an apparent occurrence of 1 in 400).
EVEN IF IT WERE ONLY 1 IN 400, WOULD THAT MATTER? Of course not. There would still be hundreds and hundreds of innocent people's lives being destroyed. Every single case involves the wider family, colleagues, friends, etc. At a conservative estimate of 10 people affected per case, just imagine the amount of human torture and misery being suffered (and hushed & hidden) in the name of drug company profits.
It has been proven both in civil law ("on the balance of probability") and the far stricter criminal law ("beyond all reasonable doubt") that a proportion of Parkinson's patients who are given dopamine agonists WILL suffer major obsessive compulsive disorders as side effects. Also that some of these will be so serious as to completely destroy families, marriages and careers, and that many good, honourable people will lose all their assets and get into irretrievably massive debt. I have seen this happen with my own brother in this past year. Many members on this forum now recognises and acknowledges this scenario. (THERE is the REAL proof). It is also acknowledged that on several occasions suicide has resulted, fortunately for my brother he was found before he tried hanging himself in his garage.
It has further been accepted in court that dopamine agonists can and do override the patient's sense of moral responsibility and honesty to the point where they cannot even understand the concept of right and wrong. And inevitably the patient becomes totally addicted to their new interest(s), and unable to break free.
These facts alone in my oponion should have every branch of the media up in arms, crusading on behalf of these innocent victims, who even without all this tragedy are faced with a grim Parkinsonian future. There should be uproar. Organisations like PUK should be shouting from the rooftops for the whole world to hear. Charities should be organising funds for both compensation and civil lawsuits. Yet, if you were to ask 100 people in the street what they thought of the situation I'd be staggered if more than 1 knew what you were talking about. I admit I was in ignorance until I did all my research.
Given the above, there is clearly no question about the validity or sufficiency of the evidence, and I fail to understand why you perceive the issue in this way. The ONLY disagreement, if there is one, is as to how big the proportion is. By using research data pertaining to NON-Parkinsonian patients (who, for their ailment, may only need 1% of the dose a PD patient might require) the drug companies cleverly manipulate their misinformation to imply that the proportion (which we now KNOW to be 24%, if not more) is whatever they want it to be (e.g. 1% of 24% would give an apparent occurrence of 1 in 400).
EVEN IF IT WERE ONLY 1 IN 400, WOULD THAT MATTER? Of course not. There would still be hundreds and hundreds of innocent people's lives being destroyed. Every single case involves the wider family, colleagues, friends, etc. At a conservative estimate of 10 people affected per case, just imagine the amount of human torture and misery being suffered (and hushed & hidden) in the name of drug company profits.
You are all getting bogged down with the view that I don't believe you. I am not important here. Please stay away from insisting that I listen to your stories again and again. It's not me you have to convince.
I am only interested in the science here. I have looked up the following document
http://www.nice.org.uk/nicemedia/live/10984/30087/30087.pdf
and can't see much in it which backs up your case. There are a few comments and warnings but they still recommend the use of DAs.
These are the sort of publications you need to convince, NOT ME.
I have nothing to gain here people, I want to see a fair discussion. Even if I 'won' this discussion I would gain nothing from it. Use me to hone and polish your arguments to make your case to the people who can change things.
I am not the enemy!
I am only interested in the science here. I have looked up the following document
http://www.nice.org.uk/nicemedia/live/10984/30087/30087.pdf
and can't see much in it which backs up your case. There are a few comments and warnings but they still recommend the use of DAs.
These are the sort of publications you need to convince, NOT ME.
I have nothing to gain here people, I want to see a fair discussion. Even if I 'won' this discussion I would gain nothing from it. Use me to hone and polish your arguments to make your case to the people who can change things.
I am not the enemy!
hi Radz
The last paragraph of your post highlights the real elephant in the room!
Experts and non believers on this forum can debate the number of PwP impacted by OCD until the cow's come home! Whether it is 7%, 17% or 27% that experience serious side effects, is just the tip of a very large iceberg.
For every ONE person who ends with DA induced pathological side effects, there are many other people associated with this person who's lives are also impacted. Partners, Family and Friends and even strangers are all affected by this issue.
So the TRUTH as to the real extent of this issue is yet to come !!!
best wishes
bluey
The last paragraph of your post highlights the real elephant in the room!
Experts and non believers on this forum can debate the number of PwP impacted by OCD until the cow's come home! Whether it is 7%, 17% or 27% that experience serious side effects, is just the tip of a very large iceberg.
For every ONE person who ends with DA induced pathological side effects, there are many other people associated with this person who's lives are also impacted. Partners, Family and Friends and even strangers are all affected by this issue.
So the TRUTH as to the real extent of this issue is yet to come !!!
best wishes
bluey
hi Spam95
The Royal College of Physicians (RCP) report you attached WAS FROM 2006.
Major research studies in to OCD side effects were not published until 2010 and 2011, Therefore it is not surprising there is very little mention of OCD side effects contained within the RCP report from 2006?
The RCP report you attached is completely out of date with current thinking and research. If your going to put forward a case on behalf of the non believers, at least compare apples with apples!
You also say in summary your not the enemy, well you could fool me! Personally i think your thread is not contributing anything that's going to add value to this debate. Therefore to quote a phrase from the Dragons Den... I'm out.
regards
bluey
The Royal College of Physicians (RCP) report you attached WAS FROM 2006.
Major research studies in to OCD side effects were not published until 2010 and 2011, Therefore it is not surprising there is very little mention of OCD side effects contained within the RCP report from 2006?
The RCP report you attached is completely out of date with current thinking and research. If your going to put forward a case on behalf of the non believers, at least compare apples with apples!
You also say in summary your not the enemy, well you could fool me! Personally i think your thread is not contributing anything that's going to add value to this debate. Therefore to quote a phrase from the Dragons Den... I'm out.
regards
bluey
Spam,
I am sorry you feel this way, I don't want to use you in any way at all.
Thanks for telling us who we need to convince, Spam, but we are of the opinion that all the necessary convincing has already been done. Now is the time for action. Thanks for your contribution.
Radz
I am sorry you feel this way, I don't want to use you in any way at all.
Thanks for telling us who we need to convince, Spam, but we are of the opinion that all the necessary convincing has already been done. Now is the time for action. Thanks for your contribution.
Radz
You're absolutely right Radar!
But what are you going to do? Continuing to shout from the sidelines will not change the chugging train that is the medical and legal establishment. You need to get together and set up a group that can talk as one to these great big institutions. Only then will the train change course!
If you just continue to fill these pages with your stories you will get nowhere.
Someone had mooted a website called POVIE.org. Why don't you all band together, start a pressure group and tackle this problem the only way it can be tackled.
You need to gather together all the data, all the testimonials, all the surveys, all the supporters and present your ideas to these people.
I would join your group
But what are you going to do? Continuing to shout from the sidelines will not change the chugging train that is the medical and legal establishment. You need to get together and set up a group that can talk as one to these great big institutions. Only then will the train change course!
If you just continue to fill these pages with your stories you will get nowhere.
Someone had mooted a website called POVIE.org. Why don't you all band together, start a pressure group and tackle this problem the only way it can be tackled.
You need to gather together all the data, all the testimonials, all the surveys, all the supporters and present your ideas to these people.
I would join your group
Hi Spam 95
What you are urging us to do sounds so simple.
BUT we all have Parkinsons or care for someone who has. We are all dealing with the restrictions the illness imposes and the financial and emotional damage the OCDs have created.
I have approached GlaxoSmithKline and 2 firms of solicitors for help and been turned away.
We belong to an organisation, PDUK, that has access to all the information you say we need to collate...all the scientific research proving beyond doubt the damage does to at least 1 in 4 patients on DAs. ( latest Mayo Clinic paper - 1 in 2 of men under 50)
PDUK has mountains of personal stories from those affected in this forum and from the helpline.
They should be fighting for justice for us.
I only hope that their failure is not linked to funding from these same drug companies which may include the requirement to lobby for prescription of the latest moneyspinning DAs.
Although I would love to implement your suggestions I no longer have the money, time or energy to do more than get through each day of this nightmare that life has become.
What you are urging us to do sounds so simple.
BUT we all have Parkinsons or care for someone who has. We are all dealing with the restrictions the illness imposes and the financial and emotional damage the OCDs have created.
I have approached GlaxoSmithKline and 2 firms of solicitors for help and been turned away.
We belong to an organisation, PDUK, that has access to all the information you say we need to collate...all the scientific research proving beyond doubt the damage does to at least 1 in 4 patients on DAs. ( latest Mayo Clinic paper - 1 in 2 of men under 50)
PDUK has mountains of personal stories from those affected in this forum and from the helpline.
They should be fighting for justice for us.
I only hope that their failure is not linked to funding from these same drug companies which may include the requirement to lobby for prescription of the latest moneyspinning DAs.
Although I would love to implement your suggestions I no longer have the money, time or energy to do more than get through each day of this nightmare that life has become.
hi goldengirl, Radz, glenchass, AB, and anyone else who reads this.
I'm going to PUK's offices in London this Friday for a meeting.
I have offered to head up a National Awareness campaign working out of PUK's offices for 1 to 2 days a week for the next few months. I am also agreed to be involved in the recruitment of a P/T Campaign officer, the advert is on this website.
In summary the main focus for my proposed involvement in the forthcoming campaign will be as follows;
1)To raise awareness among all health professionals ensuring a balanced approach that highlights the benefits of DA's as well as the OCD risk.
2)Lobby the pharmaceutical companies and relevant UK drug regulators to improve OCD warnings on patient leaflets and various websites.
3)Develop a clear strategy for PUK in terms of the support, advise and help it gives to PwP affected by this issue.
4)Represent people who have been affected by OCD and also to act as an ambassador for PUK on this issue.
I spent 30 years working in a number of senior posts within retail sector. My roles included having to manage many complex projects and bringing about major change within the retail industry. This was achieved via forging strong relationships and an ability to influence and get buy in from all key stakeholders.
So wish me luck on Friday and i will update you all on the outcome of my meeting over the weekend.
Regards
bluey
I'm going to PUK's offices in London this Friday for a meeting.
I have offered to head up a National Awareness campaign working out of PUK's offices for 1 to 2 days a week for the next few months. I am also agreed to be involved in the recruitment of a P/T Campaign officer, the advert is on this website.
In summary the main focus for my proposed involvement in the forthcoming campaign will be as follows;
1)To raise awareness among all health professionals ensuring a balanced approach that highlights the benefits of DA's as well as the OCD risk.
2)Lobby the pharmaceutical companies and relevant UK drug regulators to improve OCD warnings on patient leaflets and various websites.
3)Develop a clear strategy for PUK in terms of the support, advise and help it gives to PwP affected by this issue.
4)Represent people who have been affected by OCD and also to act as an ambassador for PUK on this issue.
I spent 30 years working in a number of senior posts within retail sector. My roles included having to manage many complex projects and bringing about major change within the retail industry. This was achieved via forging strong relationships and an ability to influence and get buy in from all key stakeholders.
So wish me luck on Friday and i will update you all on the outcome of my meeting over the weekend.
Regards
bluey
BLUEY...... I wish you all the luck in the world, well done you.
I know you will be just marvellous in that role, I am soooooo proud of you.
Lots of love
Radz xx
I know you will be just marvellous in that role, I am soooooo proud of you.
Lots of love
Radz xx
Go Bluey...whoop whoop
Hope you get all the support you need at the PDUK office and go forward to make great progress.
Well done you
Diane
Hope you get all the support you need at the PDUK office and go forward to make great progress.
Well done you
Diane
I fully agree with your actions bluey. Good for you!
I still think you need to group together to present your case properly and with clarity. Why do you not start a formal pressure group?
I feel you should treat PDUK as part of the medical establishment and PROVE to them that you guys have a problem. Give them the weight of evidence they will need to prove your case, and don't rely on them to get it all together.
One thing, what do you want to achieve? Can anyone come up with a statement against which you can measure success or failure of your actions? A Mission Statement?
I still think you need to group together to present your case properly and with clarity. Why do you not start a formal pressure group?
I feel you should treat PDUK as part of the medical establishment and PROVE to them that you guys have a problem. Give them the weight of evidence they will need to prove your case, and don't rely on them to get it all together.
One thing, what do you want to achieve? Can anyone come up with a statement against which you can measure success or failure of your actions? A Mission Statement?
whew, i can still get in. my sincere apologies to spam (please feel free to be rude to me if you want), i can't resist it when i have a good pun (i could point to it as an obsession but that might be taken as a joke which it is not, btw eck, your opinion is greatly esteemed.)
serious stuff
i found today, at my cost, that things can go to far the other way. according to my neuro (a splendid lady, think dame joan sutherland in leather boots, stockings and a nose piercing) told me that DAs are generally not available in australia because of an over-reaction by the government to OCD legal cases. the result was that people who were doing well on DAs or a mixture of DAs and ldopa were given less than best medication.
DAs can provide a constant base on which the more variable L-dopa can be added.
Those who want to restrict DAs must make themselves clear that they want proper use not a total ban, otherwise many people will suffer, some quite severely.
On medical ethics, about 1000 people each year are killed by penecillin, but who would ban that? there is a balance between the suffering of one group and another.
serious stuff
i found today, at my cost, that things can go to far the other way. according to my neuro (a splendid lady, think dame joan sutherland in leather boots, stockings and a nose piercing) told me that DAs are generally not available in australia because of an over-reaction by the government to OCD legal cases. the result was that people who were doing well on DAs or a mixture of DAs and ldopa were given less than best medication.
DAs can provide a constant base on which the more variable L-dopa can be added.
Those who want to restrict DAs must make themselves clear that they want proper use not a total ban, otherwise many people will suffer, some quite severely.
On medical ethics, about 1000 people each year are killed by penecillin, but who would ban that? there is a balance between the suffering of one group and another.
hi turnip, maybe your neuro should stick to impersonating Dame Joan Sutherland 
The only DA's I'm aware are being withdrawn by doctors in Australia are Cabergoline and pergolide. This is due to heart valve problems and not because of OCD side effects.
What i do observe happening in Australia is, more initial screening of patients for suitability to take DA's and better ongoing monitoring by doctors to minimise OCD risks. Maybe this is because of recent lawsuits who knows? However if as a result of a few doctors ending up in court due to negligence, has resulted in health professionals taking more care and doing what they should be doing, then in my view that's a good thing.
This campaign is NOT about banning or restricting access to DA's! It is about managing the OCD risks better whilst retaining the positive benefits!
Have a nice day and enjoy the sunshine.
bluey
The only DA's I'm aware are being withdrawn by doctors in Australia are Cabergoline and pergolide. This is due to heart valve problems and not because of OCD side effects.
What i do observe happening in Australia is, more initial screening of patients for suitability to take DA's and better ongoing monitoring by doctors to minimise OCD risks. Maybe this is because of recent lawsuits who knows? However if as a result of a few doctors ending up in court due to negligence, has resulted in health professionals taking more care and doing what they should be doing, then in my view that's a good thing.
This campaign is NOT about banning or restricting access to DA's! It is about managing the OCD risks better whilst retaining the positive benefits!
Have a nice day and enjoy the sunshine.
bluey
hi
requip is not supported by medicare ($125 dollars for my prescription - £80 and thats only a quarter of what i need) and is not stocked locally and is only supplied in 2mg tablets, not exactly banned but damned close.
i know you don't want to ban DAs but i think it needs to be clear to everyone that there is a place for DAs.
cheers
btw today sunny 18, wed sunny 20, thurs sunny 18, fri sunny, 17 sat ......
will it never end!!!
requip is not supported by medicare ($125 dollars for my prescription - £80 and thats only a quarter of what i need) and is not stocked locally and is only supplied in 2mg tablets, not exactly banned but damned close.
i know you don't want to ban DAs but i think it needs to be clear to everyone that there is a place for DAs.
cheers
btw today sunny 18, wed sunny 20, thurs sunny 18, fri sunny, 17 sat ......
will it never end!!!
Turnip...
I really don't think that you need to worry, I'm sure that none of us want the DA's banned completely. We recognize that there are many people for who they are a lifeline. My oh my, how expensive are your meds? Are there any government supplements that can help with the costs, a bit like our quarterly prescription payment scheme? Sounds like it don't pay to be sick eh???
Bluey
Good luck for Friday Mate, we will be thinking of you. Give em hell!!!!
Glenchass
I really don't think that you need to worry, I'm sure that none of us want the DA's banned completely. We recognize that there are many people for who they are a lifeline. My oh my, how expensive are your meds? Are there any government supplements that can help with the costs, a bit like our quarterly prescription payment scheme? Sounds like it don't pay to be sick eh???
Bluey
Good luck for Friday Mate, we will be thinking of you. Give em hell!!!!
Glenchass
I feel this thread has run its course.
I have no more to say. If you ever get round to forming an active pressure group that tackles the establishment in a way that might effect their thinking, please let me join. I wish you all the best in the future and hope you achieve your aims.
Good Luck
Chris
I have no more to say. If you ever get round to forming an active pressure group that tackles the establishment in a way that might effect their thinking, please let me join. I wish you all the best in the future and hope you achieve your aims.
Good Luck
Chris
Hi Blueyes
Thank you so much for your dogged determination and hard work, I wish you every success, not easy when one has a debilitating condition. And that is the difficulty for all affected when, having lost property, funds, and relationships, to face the herculean (impossible)task of getting redress from a hostile legal system loaded with statutes of limitation, "your'e outside the 3/9 year time limit, bad luck" etc.
It is said that stress in one of the worst thing for Parkinson's, I can't envisage much more stress than these situations cause.
I am reminded of the line from (was it?) 'Alien'- "In space no-one can hear you scream"
Jonathan
Thank you so much for your dogged determination and hard work, I wish you every success, not easy when one has a debilitating condition. And that is the difficulty for all affected when, having lost property, funds, and relationships, to face the herculean (impossible)task of getting redress from a hostile legal system loaded with statutes of limitation, "your'e outside the 3/9 year time limit, bad luck" etc.
It is said that stress in one of the worst thing for Parkinson's, I can't envisage much more stress than these situations cause.
I am reminded of the line from (was it?) 'Alien'- "In space no-one can hear you scream"
Jonathan
Hi bluey
I echo Jonathon's remarks.
All thlove and luck in the world in your new post.
I hope you can get PDUK to:
- force drug companies and consultants to accurately and adequately provide - patients and carers with warnings about DAs and monitor them carefully.
- set up a dedicated helpline to advise affected patients .
- take legal advice re setting up a class action for sufferers and advertise this in newspapers as the Canadian firm did.
A huge job but if anyone can do it you can!
Love and thanks
Goldengirl
I echo Jonathon's remarks.
All thlove and luck in the world in your new post.
I hope you can get PDUK to:
- force drug companies and consultants to accurately and adequately provide - patients and carers with warnings about DAs and monitor them carefully.
- set up a dedicated helpline to advise affected patients .
- take legal advice re setting up a class action for sufferers and advertise this in newspapers as the Canadian firm did.
A huge job but if anyone can do it you can!
Love and thanks
Goldengirl
this thread seemed to have got lost