Thank you Eileenpatricia for your support.
I comfort myself with the kindness and advice and warmth that I have found on the forum and need to remind myself that there is only a tiny minority who add to my anxiety and sadness.
Without all the good people who try to offer comfort I dread to thin what would have become of us.
Love
GG
X
Kyloe you really have no idea and that's obviously because you have not been touched personally by the OCD behaviours brought on by some DA'a. Your attitude beggar's belief and coming from a fello PD sufferer, I find your remarks quite offensive. The link that you posted was not linked to PD and the fact that you felt the need to use that in this part of the forum shows you lack of insight.
We will continue to 'harp on' as you say, until we are satisfied that this issue has and is being dealt with. What has happened to us is unjust and if you and others of the same mind as yourself had suffered as we, who have experienced OCD behaviours as a result of our meds have you would not be making remarks as you do.
Walk in our shoes before you judge, my man, and judge others as you would wish to be judged.
Glenchass
We will continue to 'harp on' as you say, until we are satisfied that this issue has and is being dealt with. What has happened to us is unjust and if you and others of the same mind as yourself had suffered as we, who have experienced OCD behaviours as a result of our meds have you would not be making remarks as you do.
Walk in our shoes before you judge, my man, and judge others as you would wish to be judged.
Glenchass
" you really have no idea and that's obviously because you have not been touched personally by the OCD behaviours brought on by some DA'a. Your attitude beggar's belief and coming from a fello PD sufferer, I find your remarks quite offensive. The link that you posted was not linked to PD and the fact that you felt the need to use that in this part of the forum shows you lack of insight. "
The link that I posted was to demonstrate that there are many people who suffer from OCD's who have not been diagnosed with Parkinson's , this fact alone must make it that much harder for the medical profession and legal profession to determine whether someone who has been affected by taking DA's was or was'nt already displaying OCD's before taking any medication.
As stated before one would find it quite difficult to find any one person who does'nt display some form of obsessive/compulsive behaviour and who has not been diagnosed with Parkinson's .
Whether I have suffered or not as a result of taking DA's is something I choose not to discuss on a public forum, in the absence of that you are entitled to assume whatever you wish !
I still don't understand why one continuously complains that PDUK is'nt doing enough, they do after all provide one with a platform where one can air their views and glean information, namely this forum , that in itself is something we should all be thankful for despite the fact that the forum software needs to be seriously upgraded.
The link that I posted was to demonstrate that there are many people who suffer from OCD's who have not been diagnosed with Parkinson's , this fact alone must make it that much harder for the medical profession and legal profession to determine whether someone who has been affected by taking DA's was or was'nt already displaying OCD's before taking any medication.
As stated before one would find it quite difficult to find any one person who does'nt display some form of obsessive/compulsive behaviour and who has not been diagnosed with Parkinson's .
Whether I have suffered or not as a result of taking DA's is something I choose not to discuss on a public forum, in the absence of that you are entitled to assume whatever you wish !
I still don't understand why one continuously complains that PDUK is'nt doing enough, they do after all provide one with a platform where one can air their views and glean information, namely this forum , that in itself is something we should all be thankful for despite the fact that the forum software needs to be seriously upgraded.
Posted - 18 Jul 2013 19:16Report this post
If you read the Mayo Clinic research findings they refer to NEW ONSET OCDs.
This means they did not suffer from them before taking DAs.
Many people without Parkinsons suffer from mobility problems, stiffness etc
It is irrelevant in Parkinsons research into these difficulties
PDUK accept the DA/OCD link and publish useful information and advice.
The drug companies have been forced to add warnings to patient leaflets after the MHRA studied the evidence.
I am at a loss to understand why some people who are lucky enough not to suffer in this way cannot accept the reality.
I doubt if your picture straightening, Kyloe, would lead to the loss of your life's savings or your relationship with family and friends, or yourmarriage.
This is the reality for at least 1 in 4 of us on DAs or caring for them,
GG
You seem not to read the replies to your posts.
You have posted this before and been offered all the information to show you that is a view not supported by the medical or legal professions.
For the last time,1in 4 people develop new onset pathological compulsions on DAs at a therapeutic dose mainly in gambling and hyper sexuality.
This has no connection to OCDs in the general population.
The OCDs are extinguished if the DAs are withdrawn.
I am not prepared to comment further as you seem to be intent on ridiculing the sufferers for your own reasons and ignoring all the published research.
I
If you read the Mayo Clinic research findings they refer to NEW ONSET OCDs.
This means they did not suffer from them before taking DAs.
Many people without Parkinsons suffer from mobility problems, stiffness etc
It is irrelevant in Parkinsons research into these difficulties
PDUK accept the DA/OCD link and publish useful information and advice.
The drug companies have been forced to add warnings to patient leaflets after the MHRA studied the evidence.
I am at a loss to understand why some people who are lucky enough not to suffer in this way cannot accept the reality.
I doubt if your picture straightening, Kyloe, would lead to the loss of your life's savings or your relationship with family and friends, or yourmarriage.
This is the reality for at least 1 in 4 of us on DAs or caring for them,
GG
You seem not to read the replies to your posts.
You have posted this before and been offered all the information to show you that is a view not supported by the medical or legal professions.
For the last time,1in 4 people develop new onset pathological compulsions on DAs at a therapeutic dose mainly in gambling and hyper sexuality.
This has no connection to OCDs in the general population.
The OCDs are extinguished if the DAs are withdrawn.
I am not prepared to comment further as you seem to be intent on ridiculing the sufferers for your own reasons and ignoring all the published research.
I
I think we should get back to the subject; this squabbling does no one any good...
I was a victim of OCD's - check out the username! I found the buzz and de-inhibiting effects of ropinerole most exciting - I became a ropinerole junkie, popping 5mg every 2 to three hours which those with calculators will work out about 30-50mg a day. I had ocd's in spades I had the full hand, from shoppimg off the web to shoppig for computer bits off the shelf. I also had a hefty gambling proble with scratch cards - up to £50 a day...not tomention the problems I had with hpersexuality - vsiting brothels and seeing women on dates....loose women. i started proably with ropinerole issues just before my 50th birthday - a day spent in a brothel, I had no consultant - the incumbent had retired. I just took more and my gp provided it. luckily ???!!! my spouse found money missing and a quick visit to the new geriatrician?? cut my reqip dose to a sensible 20mg a day..I was saved... but I still get "flashbacks"... which are very limited, just a phone call to find out which girls are working is enough.
I can't think what would happen if I followed through on one of these phone calls probably divorce...
best of luck to you all....
A~
I was a victim of OCD's - check out the username! I found the buzz and de-inhibiting effects of ropinerole most exciting - I became a ropinerole junkie, popping 5mg every 2 to three hours which those with calculators will work out about 30-50mg a day. I had ocd's in spades I had the full hand, from shoppimg off the web to shoppig for computer bits off the shelf. I also had a hefty gambling proble with scratch cards - up to £50 a day...not tomention the problems I had with hpersexuality - vsiting brothels and seeing women on dates....loose women. i started proably with ropinerole issues just before my 50th birthday - a day spent in a brothel, I had no consultant - the incumbent had retired. I just took more and my gp provided it. luckily ???!!! my spouse found money missing and a quick visit to the new geriatrician?? cut my reqip dose to a sensible 20mg a day..I was saved... but I still get "flashbacks"... which are very limited, just a phone call to find out which girls are working is enough.
I can't think what would happen if I followed through on one of these phone calls probably divorce...
best of luck to you all....
A~
The PUK are the largest PD charity in the UK.
They provide a variety of resources and help to aid PWP to deal with the problems of PD and improve their quality of life.. They also fund research into a variety of projects including some that may lead to a "cure" for the illness
They are not a government body, nor are they an official representative of PWP. Membership of the PUK is voluntary, however they do not discriminate against non members utilising their resources.
The PUK has formed partnerships with the major pharmaceutical companies, including GSK and Boehringer Ingelheim Limited, the manufacturers of Requip and Mirapexin respectively. The total amount in donations received from all pharma companies by the PUK is less than 0.5% according to information on the PUK website. GSK are very involved with a project called the Healthy Alliance which provides support for PD Nurses.
All above board and all very commendable.
Consider the following:
A charity's purpose is to collect income through donations and spend that income on activities that benefit the people it represents.
A pharmaceutical companies purpose is to produce drugs that it can sell on the world market at the largest profit possible,in order to keep its employees in a job and to maximise the return on the investment of its shareholders.
Paying out monies to individuals who require compensating for damages incurred due to negligence associated with their products affects profits. The Pharmaceutical trade is worth billions and is able to fund the very best defence against any claimant.
It will always defend any litigation against it however small on principle alone as any precedent set could have future consequences on its profits.
The circumstance the PUK finds itself in is; should it support a relatively small number of affected PWP in a conflict against its partners. It would appear to have chosen the latter, one would assume on the grounds that the larger majority will benefit from the partnership.
Which leaves those directly affected out on a limb with no support at all against probably the worlds wealthiest and most influential industry. There wont be many if any law firms prepared to take on such cases. The risk is too great. Furthermore it would appear that the first battle would be to overcome the seemingly unfair ruling on time limits. This could go on for years.
However, before we throw the towel in let's review the situation.
It seems to me that our cause for complaint is unusual.
Unlike other problem drugs where the side effects were unknown and the subsequent affects were widespread (eg Thalidomide) our case hangs on the lack of information provided with the drug by the manufacturer.
The information was partly there as they knew there were problems. What was not considered was the way that problems like gambling and hypersexuality manifested and how they combined with OCD / ICD and other behaviour problems including risk taking, novelty seeking and secrecy.
The Mirapexin leaflet allowed a neuro to prescribe in excess of the maximum dose which is what occured in my case.
If you view this in a non confrontational way the relatively small numbers of Pwp affected in this way have information that has contributed to the research and development of these drugs. Approach the problem from that stance and maybe the threat will be removed and they may see that we can provide a benefit that could attract a financial reward in lieu of damages.
They provide a variety of resources and help to aid PWP to deal with the problems of PD and improve their quality of life.. They also fund research into a variety of projects including some that may lead to a "cure" for the illness
They are not a government body, nor are they an official representative of PWP. Membership of the PUK is voluntary, however they do not discriminate against non members utilising their resources.
The PUK has formed partnerships with the major pharmaceutical companies, including GSK and Boehringer Ingelheim Limited, the manufacturers of Requip and Mirapexin respectively. The total amount in donations received from all pharma companies by the PUK is less than 0.5% according to information on the PUK website. GSK are very involved with a project called the Healthy Alliance which provides support for PD Nurses.
All above board and all very commendable.
Consider the following:
A charity's purpose is to collect income through donations and spend that income on activities that benefit the people it represents.
A pharmaceutical companies purpose is to produce drugs that it can sell on the world market at the largest profit possible,in order to keep its employees in a job and to maximise the return on the investment of its shareholders.
Paying out monies to individuals who require compensating for damages incurred due to negligence associated with their products affects profits. The Pharmaceutical trade is worth billions and is able to fund the very best defence against any claimant.
It will always defend any litigation against it however small on principle alone as any precedent set could have future consequences on its profits.
The circumstance the PUK finds itself in is; should it support a relatively small number of affected PWP in a conflict against its partners. It would appear to have chosen the latter, one would assume on the grounds that the larger majority will benefit from the partnership.
Which leaves those directly affected out on a limb with no support at all against probably the worlds wealthiest and most influential industry. There wont be many if any law firms prepared to take on such cases. The risk is too great. Furthermore it would appear that the first battle would be to overcome the seemingly unfair ruling on time limits. This could go on for years.
However, before we throw the towel in let's review the situation.
It seems to me that our cause for complaint is unusual.
Unlike other problem drugs where the side effects were unknown and the subsequent affects were widespread (eg Thalidomide) our case hangs on the lack of information provided with the drug by the manufacturer.
The information was partly there as they knew there were problems. What was not considered was the way that problems like gambling and hypersexuality manifested and how they combined with OCD / ICD and other behaviour problems including risk taking, novelty seeking and secrecy.
The Mirapexin leaflet allowed a neuro to prescribe in excess of the maximum dose which is what occured in my case.
If you view this in a non confrontational way the relatively small numbers of Pwp affected in this way have information that has contributed to the research and development of these drugs. Approach the problem from that stance and maybe the threat will be removed and they may see that we can provide a benefit that could attract a financial reward in lieu of damages.
Thank you Leyther.
You have brought together all the threads and your overview of the problem is ,in my opinion, accurate and clear.
What we need from PDUK is guidance on how to make your last suggestion a reality.
I have come to the conclusion that no UK legal firm will challenge the mighty drug companies or even the first hurdle...the 3 year rule.individually we can't move forward.
That is why we need co-or dictating.
As a group we may be able to make progress.
Thank you again for the support and the very positive attempt to find a way forward.
GG
You have brought together all the threads and your overview of the problem is ,in my opinion, accurate and clear.
What we need from PDUK is guidance on how to make your last suggestion a reality.
I have come to the conclusion that no UK legal firm will challenge the mighty drug companies or even the first hurdle...the 3 year rule.individually we can't move forward.
That is why we need co-or dictating.
As a group we may be able to make progress.
Thank you again for the support and the very positive attempt to find a way forward.
GG
I agree, in fact I've taken a stance, a genuflection if you will, to the drugs companies, there lawyers and vast profits needed to full fill this nations pension funds.
To the lawyers: is there any way the debt can be written off as temporary insanity due to prescription drugs, any other "crime" against humanity I would be fine, but owe money f-f-f-f-f-furget it.
To the drugs companies, could they underwrite our debts, so we can keep our homes and lift the stress, while we pay our debts.
We're time bard, Cameron has made doubly sure our hands are tightly bound with new legal aid/ medical negligence.
Message over, oh just got up from genuflecting, heartburn?, theres a bad taste still sticking in my craw!
To the lawyers: is there any way the debt can be written off as temporary insanity due to prescription drugs, any other "crime" against humanity I would be fine, but owe money f-f-f-f-f-furget it.
To the drugs companies, could they underwrite our debts, so we can keep our homes and lift the stress, while we pay our debts.
We're time bard, Cameron has made doubly sure our hands are tightly bound with new legal aid/ medical negligence.
Message over, oh just got up from genuflecting, heartburn?, theres a bad taste still sticking in my craw!
Maybe if we setup a UK support group for the people who fall into the category of having had problems due to the lack of info.
We would then know the extent of the problem.
Make it a charity and the drug companies can donate funds which we could distribute accordingly
We would then know the extent of the problem.
Make it a charity and the drug companies can donate funds which we could distribute accordingly
Great idea!
Unfortunately these money's would be tax deductible! I can't see the public going for it!
I saw a celeb on family fortunes get pelters for raising funds for prisoners children.
Unfortunately these money's would be tax deductible! I can't see the public going for it!
I saw a celeb on family fortunes get pelters for raising funds for prisoners children.
not interested in public donations just those from pharma co's
Hi all, latest on my homework. Ive had two solicitors contact me regarding going down the Court of Human Rights route, re getting ourselves heard, at least
They have asked me to contact then on Monday, so will keep you informed about outcomes.
take care
glenchass
They have asked me to contact then on Monday, so will keep you informed about outcomes.
take care
glenchass
I spoke to a solicitor last weekend I could hear their bum squeaking over the phone when I told her about my case.
I'm off to get a cat, apparently, sorry allegedly, if you have a cat it's against your 'umami rights for bayleafs. And/ Or sheriffs to evict you.
We have the talent here I'm off to make a charity single in creative corner.
I'm off to get a cat, apparently, sorry allegedly, if you have a cat it's against your 'umami rights for bayleafs. And/ Or sheriffs to evict you.
We have the talent here I'm off to make a charity single in creative corner.
Ive got six cats Eck, perhaps that's how I'm still hanging on to my home!!!!
take care
glenchass
take care
glenchass
Have just clicked on "latest activity. 24 hours" and no sign of your post Glenchass.
Some fine tuning of the new site needed?
GG
Some fine tuning of the new site needed?
GG
Hi GG
If you change the time frame for Latest Activity you need to then click Go. If you click Latest Activity it goes back to the default 12 hours.
Although the web site has been updated the Forum has not. That is due to happen "in August"!
W
If you change the time frame for Latest Activity you need to then click Go. If you click Latest Activity it goes back to the default 12 hours.
Although the web site has been updated the Forum has not. That is due to happen "in August"!
W
Thanks Worrels!
Am not very literate technically although I did think I had clicked on go.
Blame old age.
GG
X
Am not very literate technically although I did think I had clicked on go.
Blame old age.
GG
X
I have just been reading that GlaxoSmithKline made 7.6 BILLION pounds profit last year.
This year they expect to make 7.7billion .
Could we persuade them to use that little bit of extra billion to help the Requip users whose lives they have ruined?
GG
This year they expect to make 7.7billion .
Could we persuade them to use that little bit of extra billion to help the Requip users whose lives they have ruined?
GG
Now the new forum is up and running, can you let us know how the Q and A session plans re legal action and DAs/ICDs are going? In June you said it would be August or September his year.
And progress in all the other areas of support mentioned over the last year?
Thanks
GG
Hi goldengirl,
The forum is not quite 'up and running' yet. As you know, there are still a few remaining intermittent problems with logging in and continued problems with the avatars. We're not planning to do a proper launch until these are fixed.
But don't worry. The session is still a priority for us. Once the forum launches properly, we will do the Q&A and the solicitor has confirmed that he can do various dates in October.
Suma is away at the WPC. When she returns, she can provide you with an update on the other areas.
Ezinda