We have more chance of getting poo out of the proverbial rocking horse than getting any financial aid from PUK for legal costs. We've all been down the road of chasing recompense for our compulsions (some further along that road than others) but the obstacles stacked against us are almost insurmountable.
Foremost of these obstacles being....The fraternity of playboy Neurologists (not to be confused with their dedicated and miracle performing Neurosurgeon cousins), the ridiculous 3 year Statute of Limitations law, the obscene brotherhood of assassins and body robbers (collectively known as Solicitori/Causidicum/Vulturis), and last but not least, the controlling daddy and the power behind the whip, the 'Big Pharma'.
The hierarchy at PUK know this and would not be able to justify the huge amounts of donated money that would be flushed down the toilet chasing a legal precedent.
Mr Williams. Don't waste your time or breath on PUK. Search out a British multi-Billionaire with PD and use your persuasion skills on him to take up the gauntlet.
There's too many with compulsion disorders joining the ranks of the 'Forlorn Hope' in the PD Army hoping for financial reimbursement. Its about time they faced up to the reality that our present legal system ain't gunna award us nuffink!
I share your anger and frustration, Pokermid, and agree with Glenchass that the 3 year rule is just a way of stopping victims from justly claiming.
But I want to state again that I don't think PDUK should fund legal action but should be able to persuade a legal group to put together a statement of what the ground rules are to make a claim and organise the collecting of cases by a legal firm to pursue a class action..possibly via a large advert in daily newspapers, challenging the 3 year rule as well.
I await PDUK's response, still....
GG
But I want to state again that I don't think PDUK should fund legal action but should be able to persuade a legal group to put together a statement of what the ground rules are to make a claim and organise the collecting of cases by a legal firm to pursue a class action..possibly via a large advert in daily newspapers, challenging the 3 year rule as well.
I await PDUK's response, still....
GG
A mail I received in March 2009 explaining limitations
-------------------------------------------------------------
Dear Mr M.
I write further to my previous email and apologise for the delay in replying to you. Once again, I am replying to a number of people who have all contacted me that were represented by Hugh James Solicitors for potential Parkinson's disease claims. I am, of course, aware that a number of you are in contact with each other, so I am sending the same information to all of you as it applies effectively across the board.
In the circumstances, I will not go in to detail for any individual claim, but if there are any specifics of your individual claim that you would like to discuss with me, please contact me individually. You will also see that at the end of the email I will say that if the following information does not apply to your claim that you should feel free to contact me for some further discussion.
As you are aware, I had a lengthy telephone conversation, in fact several conversations, with ****** at Hugh James. ******* was extremely helpful and I note from all of you who have contacted me that you are all quite happy with the way that ******* has conducted your case, although obviously disappointed that they could not go forward.
********'s advice to me was that the expert evidence that they had obtained showed that it would be problematic to run the cases on a product liability basis. Our evidence is obviously different from the evidence that they have obtained and we do have a pharmacologist on board who does believe that the Dopamine Agonist can cause these compulsive behaviours.
Obviously, each individual case is very different and it depends on the facts of the case, for example whether warnings that compulsive behaviours could occur were given when the medication was prescribed. If you were advised that compulsive behaviours were a potential side effect of the drug and decided to take the drug anyway, then you accepted that risk and cannot thereafter make a claim for it.
We have had one or two clients who were advised that compulsive behaviours were a possible side effect of the drug, and that they affected approximately 2%-3% of the population. Even though this is a small percentage, the risk was still there and the clients still knew about it and, therefore, they are not able to bring a claim as they were advised about that risk but decided to proceed despite the warnings. Therefore, if you were advised that the medication could potentially cause compulsive behaviours and decided to take it anyway, that could be one reason why the case could not proceed.
Another important issue in any litigation is limitation. As you will likely be aware, limitation is the date by which court proceedings must be issued. In product liability claims, there are two limitations that apply. One is the standard date of knowledge limitation, which is three years from your date of knowledge of when you knew, or should have known, that the medication was the cause of the compulsive behaviours. The other limitation is the ten year longstop. This ten year deadline is imposed under the Consumer Protection Act 1987 and is an absolute bar to proceeding if ten years has expired since the date of supply of the product.
The difficulty with the ten year longstop is that it goes from the date of supply. The date of supply is deemed to be when the product, in this case the medication, left the control of the manufacturer, not when it was supplied to you. Many of the Dopamine Agonists can have a 2-3 shelf life and, therefore, it may have been the case that the drug was supplied two years before you received it.
The ten year clock starts to run from when the product leaves the control of the manufacturer and, therefore, this is a date that is unknown to us. We, therefore, like to err on the side of caution and issue proceedings well in advance of the ten year limitation to account for things such as shelf life etc.
It is my understanding from speaking with ******** that one or two of the claims that she was looking at on a clinical negligence basis would have been barred by the ten year longstop under the Consumer Protection Act in any event and it may be the case that if you were prescribed the drugs any time before 1999 that your case could also be barred.
One may be able to argue that it is only after the drugs had been in the system for several years that it caused the compulsive behaviours. However, more pharmacological evidence is needed on this point and in the literature that I have seen, there is no case report of patients developing these compulsive behaviours either taking the starter dose or even early in treatment.
The compulsive behaviours tend to show once treatment has been ongoing for some time and with the higher doses. However, the difficulty is that there is not a lot of scientific evidence to say at what precise point the Dopamine Agonist can cause this problem and, of course, as every individual reacts differently to medication, it will vary from person to person.
One of the other issues raised by ******* was the comparison test, which is set out in cases decided prior to the start of the Parkinson's disease drug litigation. Basically, what this says is that a drug has to be more than twice as likely to cause the side effects as other drugs in order for it to be defective. However, this is usually the case where there is a safe alternative. If it was the case that there were Dopamine Agonists out there that did not cause this problem, we would have to show that the particular brands such as Mirapexin, Pergolide etc were more than twice as likely as the other ones to cause these problems.
Another issue in bringing the case was, I believe, insurance, and getting cover for the risk of having to pay the other side's costs should your cases be unsuccessful. There are some clients who may qualify for legal aid, although in our experience it is very difficult to obtain legal aid to bring these cases. However, as there has been more information in the public domain of late linking the Dopamine Agonists to compulsive behaviours, we are re-applying for some clients who qualify on a means basis to see whether the Legal Services Commission will grant funding for their claims. We have yet to receive a determination so I am unable to tell you whether this is a potential alternative for funding.
As you will, of course, know, if your case is taken on a conditional fee agreement, the solicitors will always suggest that you take out insurance to guard you again the risk of having to pay the other side's costs if the claim is unsuccessful. I believe that there was some difficulty in obtaining this insurance, which was another reason, in addition to the potential bar under the Consumer Protection Act ten year longstop as to why these cases were not pursued on that basis.
Another problem with insurance is that it is quite often the case that it is not only difficult to get but that some policies do not cover Counsel's fees. We have not yet been able to find a Barrister to take the case on a conditional fee basis and, therefore, in addition to the fees for the other side's costs, the Claimants who are proceeding need to be able to pay Counsel's fees.
We are now in the process of speaking with an after the event insurance company to see whether we can get Counsel's fees covered under policies where we have deemed the case suitable to take on a conditional fee basis and I believe that this was another issue in respect of taking the cases forward on a product liability basis, as ****** was unable to obtain assurance from a Barrister that they would also take it on a conditional fee basis and, therefore, the Barrister's fees would remain payable. As you will likely know, Counsel's fees are very expensive and can run into the tens of thousands of pounds if the case goes to trial.
In respect of your own dates of knowledge, there is also some degree of concern about this, as it may be the case that you read newspaper articles or saw television programmes more than three years ago which made the link between the Dopamine Agonist and the compulsive behaviours. However, it could be potentially be argued, that in respect of your own particular claim, although you may have seen that there was a connection between the Dopamine Agonist and compulsive behaviours, that you would not know whether the Dopamine Agonist was causing your particular compulsive behaviours until such time as you came off the Dopamine Agonist and the behaviours ceased.
In order to prove a claim, we would need to show causation - namely that there were no compulsive behaviours prior to commencing the medication, that the compulsive behaviours only arose whilst taking the medication and that they ceased when the medication was stopped. This, obviously, is a good indication that the medication was the cause of the problem.
In the end, and based on their own expertise and Counsel's Advice, I believe that Hugh James felt there were just too many hurdles to overcome in bringing these cases under a product liability claim. A number of problems, such as limitation, funding, Counsel's fees and expert evidence all seemed to play a part in the decision that your cases could not be brought on a product liability basis.
I once again apologise for the delay in responding to you and hope that the above explains the rationale for why the cases could not proceed.
We are looking at cases under the Consumer Protection Act. However, none of our cases have a limitation issue in that they are all within the ten year longstop under the Consumer Protection Act and all within their three year date of knowledge. It may be the case that the three year limitation could be extended to a certain degree from three years from when you stopped taking the drugs as that would have been the point at which you would have realised that the compulsive behaviour ceased when the drugs were stopped. However, if you are outside the ten year limitation, this is an absolute bar to proceeding and your case cannot go forward.
If you are still within limitation and can meet the causation argument set out above, then it may be worth having a look at the claim. There are still issues to resolve, such as funding, arguments that the Defendants can make and there is certainly no guarantee of success in these claims. However, if you are within limitation and meet the causation guidelines and wish to discuss your particular claim further, please let me know. Otherwise, I hope that the above information has at least given you an explanation and assurance that your case was looked at comprehensively.
I do wish you every success in the future and hope that the Parkinson's treatment goes well.
Yours sincerely
***
-------------------------------------------------------------
Dear Mr M.
I write further to my previous email and apologise for the delay in replying to you. Once again, I am replying to a number of people who have all contacted me that were represented by Hugh James Solicitors for potential Parkinson's disease claims. I am, of course, aware that a number of you are in contact with each other, so I am sending the same information to all of you as it applies effectively across the board.
In the circumstances, I will not go in to detail for any individual claim, but if there are any specifics of your individual claim that you would like to discuss with me, please contact me individually. You will also see that at the end of the email I will say that if the following information does not apply to your claim that you should feel free to contact me for some further discussion.
As you are aware, I had a lengthy telephone conversation, in fact several conversations, with ****** at Hugh James. ******* was extremely helpful and I note from all of you who have contacted me that you are all quite happy with the way that ******* has conducted your case, although obviously disappointed that they could not go forward.
********'s advice to me was that the expert evidence that they had obtained showed that it would be problematic to run the cases on a product liability basis. Our evidence is obviously different from the evidence that they have obtained and we do have a pharmacologist on board who does believe that the Dopamine Agonist can cause these compulsive behaviours.
Obviously, each individual case is very different and it depends on the facts of the case, for example whether warnings that compulsive behaviours could occur were given when the medication was prescribed. If you were advised that compulsive behaviours were a potential side effect of the drug and decided to take the drug anyway, then you accepted that risk and cannot thereafter make a claim for it.
We have had one or two clients who were advised that compulsive behaviours were a possible side effect of the drug, and that they affected approximately 2%-3% of the population. Even though this is a small percentage, the risk was still there and the clients still knew about it and, therefore, they are not able to bring a claim as they were advised about that risk but decided to proceed despite the warnings. Therefore, if you were advised that the medication could potentially cause compulsive behaviours and decided to take it anyway, that could be one reason why the case could not proceed.
Another important issue in any litigation is limitation. As you will likely be aware, limitation is the date by which court proceedings must be issued. In product liability claims, there are two limitations that apply. One is the standard date of knowledge limitation, which is three years from your date of knowledge of when you knew, or should have known, that the medication was the cause of the compulsive behaviours. The other limitation is the ten year longstop. This ten year deadline is imposed under the Consumer Protection Act 1987 and is an absolute bar to proceeding if ten years has expired since the date of supply of the product.
The difficulty with the ten year longstop is that it goes from the date of supply. The date of supply is deemed to be when the product, in this case the medication, left the control of the manufacturer, not when it was supplied to you. Many of the Dopamine Agonists can have a 2-3 shelf life and, therefore, it may have been the case that the drug was supplied two years before you received it.
The ten year clock starts to run from when the product leaves the control of the manufacturer and, therefore, this is a date that is unknown to us. We, therefore, like to err on the side of caution and issue proceedings well in advance of the ten year limitation to account for things such as shelf life etc.
It is my understanding from speaking with ******** that one or two of the claims that she was looking at on a clinical negligence basis would have been barred by the ten year longstop under the Consumer Protection Act in any event and it may be the case that if you were prescribed the drugs any time before 1999 that your case could also be barred.
One may be able to argue that it is only after the drugs had been in the system for several years that it caused the compulsive behaviours. However, more pharmacological evidence is needed on this point and in the literature that I have seen, there is no case report of patients developing these compulsive behaviours either taking the starter dose or even early in treatment.
The compulsive behaviours tend to show once treatment has been ongoing for some time and with the higher doses. However, the difficulty is that there is not a lot of scientific evidence to say at what precise point the Dopamine Agonist can cause this problem and, of course, as every individual reacts differently to medication, it will vary from person to person.
One of the other issues raised by ******* was the comparison test, which is set out in cases decided prior to the start of the Parkinson's disease drug litigation. Basically, what this says is that a drug has to be more than twice as likely to cause the side effects as other drugs in order for it to be defective. However, this is usually the case where there is a safe alternative. If it was the case that there were Dopamine Agonists out there that did not cause this problem, we would have to show that the particular brands such as Mirapexin, Pergolide etc were more than twice as likely as the other ones to cause these problems.
Another issue in bringing the case was, I believe, insurance, and getting cover for the risk of having to pay the other side's costs should your cases be unsuccessful. There are some clients who may qualify for legal aid, although in our experience it is very difficult to obtain legal aid to bring these cases. However, as there has been more information in the public domain of late linking the Dopamine Agonists to compulsive behaviours, we are re-applying for some clients who qualify on a means basis to see whether the Legal Services Commission will grant funding for their claims. We have yet to receive a determination so I am unable to tell you whether this is a potential alternative for funding.
As you will, of course, know, if your case is taken on a conditional fee agreement, the solicitors will always suggest that you take out insurance to guard you again the risk of having to pay the other side's costs if the claim is unsuccessful. I believe that there was some difficulty in obtaining this insurance, which was another reason, in addition to the potential bar under the Consumer Protection Act ten year longstop as to why these cases were not pursued on that basis.
Another problem with insurance is that it is quite often the case that it is not only difficult to get but that some policies do not cover Counsel's fees. We have not yet been able to find a Barrister to take the case on a conditional fee basis and, therefore, in addition to the fees for the other side's costs, the Claimants who are proceeding need to be able to pay Counsel's fees.
We are now in the process of speaking with an after the event insurance company to see whether we can get Counsel's fees covered under policies where we have deemed the case suitable to take on a conditional fee basis and I believe that this was another issue in respect of taking the cases forward on a product liability basis, as ****** was unable to obtain assurance from a Barrister that they would also take it on a conditional fee basis and, therefore, the Barrister's fees would remain payable. As you will likely know, Counsel's fees are very expensive and can run into the tens of thousands of pounds if the case goes to trial.
In respect of your own dates of knowledge, there is also some degree of concern about this, as it may be the case that you read newspaper articles or saw television programmes more than three years ago which made the link between the Dopamine Agonist and the compulsive behaviours. However, it could be potentially be argued, that in respect of your own particular claim, although you may have seen that there was a connection between the Dopamine Agonist and compulsive behaviours, that you would not know whether the Dopamine Agonist was causing your particular compulsive behaviours until such time as you came off the Dopamine Agonist and the behaviours ceased.
In order to prove a claim, we would need to show causation - namely that there were no compulsive behaviours prior to commencing the medication, that the compulsive behaviours only arose whilst taking the medication and that they ceased when the medication was stopped. This, obviously, is a good indication that the medication was the cause of the problem.
In the end, and based on their own expertise and Counsel's Advice, I believe that Hugh James felt there were just too many hurdles to overcome in bringing these cases under a product liability claim. A number of problems, such as limitation, funding, Counsel's fees and expert evidence all seemed to play a part in the decision that your cases could not be brought on a product liability basis.
I once again apologise for the delay in responding to you and hope that the above explains the rationale for why the cases could not proceed.
We are looking at cases under the Consumer Protection Act. However, none of our cases have a limitation issue in that they are all within the ten year longstop under the Consumer Protection Act and all within their three year date of knowledge. It may be the case that the three year limitation could be extended to a certain degree from three years from when you stopped taking the drugs as that would have been the point at which you would have realised that the compulsive behaviour ceased when the drugs were stopped. However, if you are outside the ten year limitation, this is an absolute bar to proceeding and your case cannot go forward.
If you are still within limitation and can meet the causation argument set out above, then it may be worth having a look at the claim. There are still issues to resolve, such as funding, arguments that the Defendants can make and there is certainly no guarantee of success in these claims. However, if you are within limitation and meet the causation guidelines and wish to discuss your particular claim further, please let me know. Otherwise, I hope that the above information has at least given you an explanation and assurance that your case was looked at comprehensively.
I do wish you every success in the future and hope that the Parkinson's treatment goes well.
Yours sincerely
***
Dear all,
I've made a posting under the topic 'Where we are at and where we are going at Parkinson's UK' - as it contains information additional to the issues raised here, I wanted to ensure that people who have not been part of this discussion readily see it too.
Kind regards,
Suma
I've made a posting under the topic 'Where we are at and where we are going at Parkinson's UK' - as it contains information additional to the issues raised here, I wanted to ensure that people who have not been part of this discussion readily see it too.
Kind regards,
Suma
Thank you Pokermid and Suma, although I fear the legal obstacles are huge in this country and legal validation of the terrible damage caused by these drugs is unlikely to be achieved, I do feel that at last a plan is coming together to get the best possible support from professionals for the victims.
Hopefully the problem will die away as neurologists stop over-prescribing these very dangerous drugs and pick up on the OCDs despite the deviousness and secrecy used to hide them by patients in their grip.
I look forward to continued development of the strategy in 2013. Have a lovely Xmas break everyone.
Love GG
Hopefully the problem will die away as neurologists stop over-prescribing these very dangerous drugs and pick up on the OCDs despite the deviousness and secrecy used to hide them by patients in their grip.
I look forward to continued development of the strategy in 2013. Have a lovely Xmas break everyone.
Love GG
Good morning I have re read the forum notes.
I feel we have had some good news recently the Daily Mail Article., however was not hard hittin enough for myself. The outcome of the French case was a judgement backed up by a failed appeal by GSK.
We already have the Hull case, a successful defence to criminal proceedings ( conditional discharge ) . 2 neurologists said the ability to know right from wrong had gone as had ability to understgand. This set, a precident which i believe has not been superceded
I see that Leigh Day declined to take casas untill they settled some test cases. In nov 2011 they said 4 casses setled, sinc e then nothging
We must remember that we are claiming agaimst GSK for their failure to tell of side effects, not that the the product was defective
So far so good
Regards
I feel we have had some good news recently the Daily Mail Article., however was not hard hittin enough for myself. The outcome of the French case was a judgement backed up by a failed appeal by GSK.
We already have the Hull case, a successful defence to criminal proceedings ( conditional discharge ) . 2 neurologists said the ability to know right from wrong had gone as had ability to understgand. This set, a precident which i believe has not been superceded
I see that Leigh Day declined to take casas untill they settled some test cases. In nov 2011 they said 4 casses setled, sinc e then nothging
We must remember that we are claiming agaimst GSK for their failure to tell of side effects, not that the the product was defective
So far so good
Regards
Hello Mr W, the four cases that you refer to that Leigh day took on were
settled out of Court.
I am one of those people that have been badly effected by this issue, during my tome of taking the said drug 2003-2006 there were no warning given by the drug company or the neuro's. I only found out about in in about 2008, it's blooming criminal what this drug company have put people through and we appear to be helpless to act against them. The chap that won his fight in France was taking his drugs during the same time as me, it just seems so unfair. I'm about to loose my home as a result of what has happened it just seems so morally wrong.
Glenchass
settled out of Court.
I am one of those people that have been badly effected by this issue, during my tome of taking the said drug 2003-2006 there were no warning given by the drug company or the neuro's. I only found out about in in about 2008, it's blooming criminal what this drug company have put people through and we appear to be helpless to act against them. The chap that won his fight in France was taking his drugs during the same time as me, it just seems so unfair. I'm about to loose my home as a result of what has happened it just seems so morally wrong.
Glenchass
glenchass
do you think a petition regarding your own case would be of use?
that could possibly lead to some publicity in the national press etc?
do you think a petition regarding your own case would be of use?
that could possibly lead to some publicity in the national press etc?
Dear all
I was diagnosed 2003 at the age of forty three 3 after a short time I was prescribe R quip I became a changed man and acted out chararter. This is backed or by statenets of truth from friends ( not many left now )I ran up hugh depts , because hyposexual and got invloves i a fraud. I lost my higly paid job, a 1% share ofm the compam. Misuse of the computer and theft are both sacable offences
Those dates back into 2006 when i was sacked, so al my losses flowed chahc to consider al opptions . What we did was to reduce requip over a period of time to 19 a day from 24 My syptom s eased following this
I havw been left with huge debts I have prepared a schedule of loss which comes out a 1.2 million
As you know I was given a prison sentence for somethying i did not do. 3 year sentence, reduced b half and servedverrvee 7 months
Regards
I was diagnosed 2003 at the age of forty three 3 after a short time I was prescribe R quip I became a changed man and acted out chararter. This is backed or by statenets of truth from friends ( not many left now )I ran up hugh depts , because hyposexual and got invloves i a fraud. I lost my higly paid job, a 1% share ofm the compam. Misuse of the computer and theft are both sacable offences
Those dates back into 2006 when i was sacked, so al my losses flowed chahc to consider al opptions . What we did was to reduce requip over a period of time to 19 a day from 24 My syptom s eased following this
I havw been left with huge debts I have prepared a schedule of loss which comes out a 1.2 million
As you know I was given a prison sentence for somethying i did not do. 3 year sentence, reduced b half and servedverrvee 7 months
Regards
From "limitations",posted by Pokermid on this thread.
"In order to prove a claim, we would need to show causation - namely that there were no compulsive behaviours prior to commencing the medication, that the compulsive behaviours only arose whilst taking the medication and that they ceased when the medication was stopped. This, obviously, is a good indication that the medication was the cause of the problem".
I feel that it would be hard for anybody to say that they were not compulsive in One area or another before introduction of DA medication.My opinion that's all.Compulsive behaviour comes in all shapes and forms.Search deep and you may know deep in your heart this may be true.Everyone is accountable for their own actions.I can understand drug companies standing their ground.Especially in the light of the Blame culture society we live in today.This is why our insurance is through the roof.It is sickening.
Titan
"In order to prove a claim, we would need to show causation - namely that there were no compulsive behaviours prior to commencing the medication, that the compulsive behaviours only arose whilst taking the medication and that they ceased when the medication was stopped. This, obviously, is a good indication that the medication was the cause of the problem".
I feel that it would be hard for anybody to say that they were not compulsive in One area or another before introduction of DA medication.My opinion that's all.Compulsive behaviour comes in all shapes and forms.Search deep and you may know deep in your heart this may be true.Everyone is accountable for their own actions.I can understand drug companies standing their ground.Especially in the light of the Blame culture society we live in today.This is why our insurance is through the roof.It is sickening.
Titan
Hi Titan,
I read your post with interest and I accept that this is your opinion which you are fully entitled to, but I find that whilst the phrase “Everyone is accountable for their own actions, “may be true in an ideal world, when we are talking about the use of dopamine agonists, it is up for debate. When the brain is acting under the influence of dopamine agonists and the person is acting out a compulsion, I believe self-control is severely limited. I have been on the receiving end of my husband’s impulses and compulsions and have had to repeatedly tell myself that the man I married is still in there somewhere. I admit this has been near impossible at times. It is heartbreaking to see the man you have known and loved for many years, change beyond recognition.
I don’t find it difficult at all to say that my husband did not have any compulsions regarding hypersexuality, homosexual tendencies, cross-dressing, excessive spending. gambling nd overeating (to name but a few of his compulsions) before being dx with PD. Whilst on 24mg of Requip his moral compass was completely destroyed and his deviousness knew no bounds. We have always been open and honest about sex, fantasies etc. and I assure you that these “new activities” were just that, new. The compulsion to spend is also a difficult one to comprehend as it has been a family joke that my husband was “careful” with his money, and the same with gambling – a flutter on the Grand National every year.
He has now reduced to 16mg and the cross-dressing and hypersexuality has reduced somewhat, but the impulse to gamble is still as strong. He is struuggling to reduce the dose as he is worried about a reduction in his mobility. We were warned about gambling, not by the neuro. but by the experiences of a friend who lost thousands to gambling, (I believe his story was one of the first to be publicised in this country.) No-one mentioned hypersexuality etc. so we had no idea to look out for anything else.
I do not believe in the “blame culture” as you put it, but I believe that someone must be held accountable for the ruined lives and relationships that I have no doubts are a result of higher doses of da’s being prescribed without proper monitoring and information. We cannot say “well it was just one of those things!” and learn nothing from this. The drug companies cannot be a law unto themselves. Someone has to make a stand – not for the compensation, but to say that what happened to these people with PD and their families, was WRONG.
So I, for one, am willing to do whatever I can to get an admission of liability from the drug company. It is simply called JUSTICE.
I read your post with interest and I accept that this is your opinion which you are fully entitled to, but I find that whilst the phrase “Everyone is accountable for their own actions, “may be true in an ideal world, when we are talking about the use of dopamine agonists, it is up for debate. When the brain is acting under the influence of dopamine agonists and the person is acting out a compulsion, I believe self-control is severely limited. I have been on the receiving end of my husband’s impulses and compulsions and have had to repeatedly tell myself that the man I married is still in there somewhere. I admit this has been near impossible at times. It is heartbreaking to see the man you have known and loved for many years, change beyond recognition.
I don’t find it difficult at all to say that my husband did not have any compulsions regarding hypersexuality, homosexual tendencies, cross-dressing, excessive spending. gambling nd overeating (to name but a few of his compulsions) before being dx with PD. Whilst on 24mg of Requip his moral compass was completely destroyed and his deviousness knew no bounds. We have always been open and honest about sex, fantasies etc. and I assure you that these “new activities” were just that, new. The compulsion to spend is also a difficult one to comprehend as it has been a family joke that my husband was “careful” with his money, and the same with gambling – a flutter on the Grand National every year.
He has now reduced to 16mg and the cross-dressing and hypersexuality has reduced somewhat, but the impulse to gamble is still as strong. He is struuggling to reduce the dose as he is worried about a reduction in his mobility. We were warned about gambling, not by the neuro. but by the experiences of a friend who lost thousands to gambling, (I believe his story was one of the first to be publicised in this country.) No-one mentioned hypersexuality etc. so we had no idea to look out for anything else.
I do not believe in the “blame culture” as you put it, but I believe that someone must be held accountable for the ruined lives and relationships that I have no doubts are a result of higher doses of da’s being prescribed without proper monitoring and information. We cannot say “well it was just one of those things!” and learn nothing from this. The drug companies cannot be a law unto themselves. Someone has to make a stand – not for the compensation, but to say that what happened to these people with PD and their families, was WRONG.
So I, for one, am willing to do whatever I can to get an admission of liability from the drug company. It is simply called JUSTICE.
Annie, I have experienced much the same as you in finding myself married to a stranger after more than 40 years with a good, honourable man.
36 mg of Requip for 3 years, after many more years above the licenced maximum ,created this monster.
Titan chooses to ignore the many reputable published papers from well- known research organisations showing the side effects to be destructive in 1 in 3 patients on high doses of dopamine agonists.
Our Parkinson's nurse told us that complete withdrawal of the DAs was necessary to wipe out the hypersexuality etc. It was a long, hard road needing medical help and psychological support. After 2 years mobility is back to what it was and mentally my husband is a different man.
But we will never fully recover from the horror that these drugs brought.
And it makes it harder to bear that no-one will admit that they hid the known side effects for years.(In America they were fined millions of dollars for this but not in the UK)
If they would only admit it and take responsibility.
But they won't, the law protects them and it is hard to find a fellow Parkinson's sufferer defending them.
E-mail me privately, Annie, if I can help in any way.
Love GG
36 mg of Requip for 3 years, after many more years above the licenced maximum ,created this monster.
Titan chooses to ignore the many reputable published papers from well- known research organisations showing the side effects to be destructive in 1 in 3 patients on high doses of dopamine agonists.
Our Parkinson's nurse told us that complete withdrawal of the DAs was necessary to wipe out the hypersexuality etc. It was a long, hard road needing medical help and psychological support. After 2 years mobility is back to what it was and mentally my husband is a different man.
But we will never fully recover from the horror that these drugs brought.
And it makes it harder to bear that no-one will admit that they hid the known side effects for years.(In America they were fined millions of dollars for this but not in the UK)
If they would only admit it and take responsibility.
But they won't, the law protects them and it is hard to find a fellow Parkinson's sufferer defending them.
E-mail me privately, Annie, if I can help in any way.
Love GG
Hi goldengirl,
Thank you very much for your kind offer of support. I may well take you up on it!
Best regards,
Annie M
Thank you very much for your kind offer of support. I may well take you up on it!
Best regards,
Annie M
Strongest research to date reinforcing the reported association between disease medications and impulse control disorders in Parkinson's.
http://www.medicalnewstoday.com/releases/254667.php
http://www.medicalnewstoday.com/releases/254667.php
Thanks for the link cutiepie, it will be interesting to see the outcomes of this research.
I agree with what GG is saying and would be keen to assist in anything that might drive this issue forward and at the very least highlight it to out stupid Government. I do believe that the Court of Human Rights may just be an option..we should have the same rights as people living in other countries in seeking justice for our cause.
I wonder it Titan would feel the same if he were about to loose his home as I am, as a direct result of the DA drugs?
glenchass
I agree with what GG is saying and would be keen to assist in anything that might drive this issue forward and at the very least highlight it to out stupid Government. I do believe that the Court of Human Rights may just be an option..we should have the same rights as people living in other countries in seeking justice for our cause.
I wonder it Titan would feel the same if he were about to loose his home as I am, as a direct result of the DA drugs?
glenchass
Hi,
In reference to Cutiepies last link,
----------------------------------
How many people with pd don,t exactly paint a proper picture of their REAL circumstances on diagnosis.In other words,not tell the truth about things in areas financial,sexual or psychological.I was one who skirted around the issue."Oh no,I only bet occasionally","not a lot of money","just a bit of depression recently,that's all"etc,etc."I am completely un-weird in all areas" type of thing.Nobody is totally honest,especially if their partner is with them at the time.There is also a stigma attached,definitely embarrassment.
There is usually a basis for all influenced behaviour,whether it be,drink,drugs or medication.Like I say,search deep inside,what you don,t like,what you keep under wraps/hidden.It all comes out,when the brain is stirred up.But believe me,it was all there.However,most pwp,especially partners like to bury their heads."OH,my George would never have done that,it is so unlike him",yeah,how much don,t you really know about bashful old George?
This is what makes those findings unrealistic.I speak through experience,not conjecture.
like I say,all blame,no confession
Titan
In reference to Cutiepies last link,
----------------------------------
How many people with pd don,t exactly paint a proper picture of their REAL circumstances on diagnosis.In other words,not tell the truth about things in areas financial,sexual or psychological.I was one who skirted around the issue."Oh no,I only bet occasionally","not a lot of money","just a bit of depression recently,that's all"etc,etc."I am completely un-weird in all areas" type of thing.Nobody is totally honest,especially if their partner is with them at the time.There is also a stigma attached,definitely embarrassment.
There is usually a basis for all influenced behaviour,whether it be,drink,drugs or medication.Like I say,search deep inside,what you don,t like,what you keep under wraps/hidden.It all comes out,when the brain is stirred up.But believe me,it was all there.However,most pwp,especially partners like to bury their heads."OH,my George would never have done that,it is so unlike him",yeah,how much don,t you really know about bashful old George?
This is what makes those findings unrealistic.I speak through experience,not conjecture.
like I say,all blame,no confession
Titan
Titan, I think you are missing the point.
I wondered about things a lot pre-DA, I worked in IT and saw myself as a problem solver.
I did seek peace and solitude as my brain started on its constant DA induced internal chatter. Normally I had a flow of thoughts, they would come and go. I would watch tv, read a book, work on a computer program, etc., etc., Sometime it take my humph to visit someone a while, maybe next Wednesday , do my banking, bake a cake. That kind of thing all taking place over a week.
During DA's this didn't happen. My thoughts would get stuck. I couldn't read a book without getting the authors complete back catalogue, wondering if it all wouldnt be quicker if I just watched the DVD, Why wansnt it on DVD. I know I'll write the screenplay my bloody effin and jeffin self. In fact he, the author, can write their own I'll write my own book.... Dinner, (more effing and jeffing) ,,,,,,
See the difference ?
Now your standard human being is capable of anything, good, evil, caring & nurturing to murder. We make a conscious decision to do the deeds we do.
I complained about the name, dopamine dysregulation syndrome, as it didn't seem to address the devistation that results in being in that state of thinking, but it's quite right. How many times have we been cut up by someone in a car and thought in a regulated way, they are going to get themselves killed, or if its serious I'll take that chappies number and report him to the fuzz. Oh look someones broken down, ha ha, anyway back to my song. "Something tell me someday you care something like a poppedum on a string" Dyregulated. I'll effin jeffin kill that so and so. trying to wipe ME out. Thats attempted murder, there isn't a court in the land who would convict me if I took them out. I'd be applauded.
Now its clear there are some who dont need to be on DA's to commit a crime and not all people on DA's will commit a crime. You dont have to be on DA's to be OCD about things, not all people on DA's will be OCD about things.
However if it affects your thinking, and the proof is that it does, and having been through this myself, I can confirm that, my good lady and I would have liked some warning. I didn't make the link to my meds at the time as my thinking didn't change when I popped a tablet and didn't revert back when my tabs ran out, like dr Jekyll.
Mrs Eck just thought "My god he's gone. I dont know him. Its like living with a stranger."
Now Mrs Eck didn't have a predisposition to living with strangers, she didnt take the tabs, she knew the real me and while I was affected by DA's I was not that person, and when I came off them I returned to thinking like me. Rotten singing et al.
I wondered about things a lot pre-DA, I worked in IT and saw myself as a problem solver.
I did seek peace and solitude as my brain started on its constant DA induced internal chatter. Normally I had a flow of thoughts, they would come and go. I would watch tv, read a book, work on a computer program, etc., etc., Sometime it take my humph to visit someone a while, maybe next Wednesday , do my banking, bake a cake. That kind of thing all taking place over a week.
During DA's this didn't happen. My thoughts would get stuck. I couldn't read a book without getting the authors complete back catalogue, wondering if it all wouldnt be quicker if I just watched the DVD, Why wansnt it on DVD. I know I'll write the screenplay my bloody effin and jeffin self. In fact he, the author, can write their own I'll write my own book.... Dinner, (more effing and jeffing) ,,,,,,
See the difference ?
Now your standard human being is capable of anything, good, evil, caring & nurturing to murder. We make a conscious decision to do the deeds we do.
I complained about the name, dopamine dysregulation syndrome, as it didn't seem to address the devistation that results in being in that state of thinking, but it's quite right. How many times have we been cut up by someone in a car and thought in a regulated way, they are going to get themselves killed, or if its serious I'll take that chappies number and report him to the fuzz. Oh look someones broken down, ha ha, anyway back to my song. "Something tell me someday you care something like a poppedum on a string" Dyregulated. I'll effin jeffin kill that so and so. trying to wipe ME out. Thats attempted murder, there isn't a court in the land who would convict me if I took them out. I'd be applauded.
Now its clear there are some who dont need to be on DA's to commit a crime and not all people on DA's will commit a crime. You dont have to be on DA's to be OCD about things, not all people on DA's will be OCD about things.
However if it affects your thinking, and the proof is that it does, and having been through this myself, I can confirm that, my good lady and I would have liked some warning. I didn't make the link to my meds at the time as my thinking didn't change when I popped a tablet and didn't revert back when my tabs ran out, like dr Jekyll.
Mrs Eck just thought "My god he's gone. I dont know him. Its like living with a stranger."
Now Mrs Eck didn't have a predisposition to living with strangers, she didnt take the tabs, she knew the real me and while I was affected by DA's I was not that person, and when I came off them I returned to thinking like me. Rotten singing et al.
I thought my post from a week ago was a more succinct response but it got deleted!
IMNHO
We are our brains, our brains are us.
If someone hits us on the head with a sledgehammer our brains change and we change.
DAs in sufficient quantities are a chemical sledgehammer.
We become a different person, we can't choose not to be that person any more than someone can choose not to be hit on the head.
For some people eg Titan, the new persona has more in common with the old persona than others.
On extreme DAs I had fantasies that I would never normally entertain, when the DAs stopped fantasies stopped. Whether they were always 'there' in some way is irrelevant. The important thing is they wouldn't have surfaced without the chemical sledgehammer.
We each experience these things depending on our starting point, there is no one truth for everybody.
We are our brains, our brains are us.
If someone hits us on the head with a sledgehammer our brains change and we change.
DAs in sufficient quantities are a chemical sledgehammer.
We become a different person, we can't choose not to be that person any more than someone can choose not to be hit on the head.
For some people eg Titan, the new persona has more in common with the old persona than others.
On extreme DAs I had fantasies that I would never normally entertain, when the DAs stopped fantasies stopped. Whether they were always 'there' in some way is irrelevant. The important thing is they wouldn't have surfaced without the chemical sledgehammer.
We each experience these things depending on our starting point, there is no one truth for everybody.
I think you hit the nail on the head with your example turnups! Spot on!