Hear, hear!
Spam,
To add to those who have already answered your post I had no interest in gambling whosoever. The fist I knew of online poker(my poison of choice) was on a visit to my PD nurse who informed me that some people with Parkinson's seemed to be addicted to these online sites. I remember thinking at the time, "Thats a damn fine idea". Before that it was fishing (another brand new hobby) and punding (endlessly rebuilding a PC), I didn't have that problem either, I was ripping my marriage apart, the most precious aspect of my life.
I wasted thousands in an attempt to prove casino sites were rigged. That they didn't conform to laws of chance and probability. You were doomed to lose.
When you used their "FREE" money you would win more often than not, when it was down to real cash you could lose 50 hands on the trot.
I still don't think I was gambling.
It was punding online.
To add to those who have already answered your post I had no interest in gambling whosoever. The fist I knew of online poker(my poison of choice) was on a visit to my PD nurse who informed me that some people with Parkinson's seemed to be addicted to these online sites. I remember thinking at the time, "Thats a damn fine idea". Before that it was fishing (another brand new hobby) and punding (endlessly rebuilding a PC), I didn't have that problem either, I was ripping my marriage apart, the most precious aspect of my life.
I wasted thousands in an attempt to prove casino sites were rigged. That they didn't conform to laws of chance and probability. You were doomed to lose.
When you used their "FREE" money you would win more often than not, when it was down to real cash you could lose 50 hands on the trot.
I still don't think I was gambling.
It was punding online.
Hi Spam,
I'm not sure there's a certain type of person who's more likely to suffer then others, I wasn't a gambler before I started to take DA's and I haven't been a gambler since coming off them, apart from the odd lottery ticket and a day at the races once a year.
The addiction creeps up on you, you think your in control, you don't admit to yourself you have a problem and you don't tell anyone and you lose all logical thinking, you become very good at hiding what your doing even when you realize your getting deeper and deeper in debt you still hide it, you just need the buzz and it's only when things go too far that you have to tell someone because there's no other way out.
I'm not sure there's a certain type of person who's more likely to suffer then others, I wasn't a gambler before I started to take DA's and I haven't been a gambler since coming off them, apart from the odd lottery ticket and a day at the races once a year.
The addiction creeps up on you, you think your in control, you don't admit to yourself you have a problem and you don't tell anyone and you lose all logical thinking, you become very good at hiding what your doing even when you realize your getting deeper and deeper in debt you still hide it, you just need the buzz and it's only when things go too far that you have to tell someone because there's no other way out.
Gambling,hypersexuality,compulsive shopping,etc etc, are merely the behaviour symptoms and not the cause.
The cause is a need to seek out extremes and take risks in order to satisfy the overload of dopamine in your brain. This means your in a continual state of thrill seeking and want constant stimulation in order to fulfill your cravings. To begin with this could be focused on just one behaviour ie gambling, then switch to another such as hypersex or addictive shopping. Its not that unusual for someone affected to end up with 2 or 3 problems all at the same time, as the need to seek pleasure and to take risks grows and grows.
Personality trait, lifestyle, age, type of job you have, can all be factors in adding to the risk when taking DA's particularly at max daily dosage levels. It is far to simple just to say someone who previously spent 20 quid every week at the bookies, is going to automatically become a pathological gambler if they start taking DA,s.
The cause is a need to seek out extremes and take risks in order to satisfy the overload of dopamine in your brain. This means your in a continual state of thrill seeking and want constant stimulation in order to fulfill your cravings. To begin with this could be focused on just one behaviour ie gambling, then switch to another such as hypersex or addictive shopping. Its not that unusual for someone affected to end up with 2 or 3 problems all at the same time, as the need to seek pleasure and to take risks grows and grows.
Personality trait, lifestyle, age, type of job you have, can all be factors in adding to the risk when taking DA's particularly at max daily dosage levels. It is far to simple just to say someone who previously spent 20 quid every week at the bookies, is going to automatically become a pathological gambler if they start taking DA,s.
Thanks Blueeyes,
But how does all this fit in with the proposed new regime of offering counselling "from the start of OCDs appearing"?
Every poster so far says it's impossible to detect the start of OCDs for carers and perpetrators will not volunteer the information whilst gaining such pleasure.
Also how does the greatest risk at max dosage tie in with legal advice that for a consultant to prescribe 36 mg a day of Requip XL for 3 years for my husband and deny the drug contributed in any way to his appalling behaviour (50% more than the licensed maximum) is not an offence?
It's great to hear that steps are underway to address the problem but the counselling sounds unworkable and there is no penalty for health professionals and drug companies who ignore the warnings.
But more power to your elbow anyway!
GG
But how does all this fit in with the proposed new regime of offering counselling "from the start of OCDs appearing"?
Every poster so far says it's impossible to detect the start of OCDs for carers and perpetrators will not volunteer the information whilst gaining such pleasure.
Also how does the greatest risk at max dosage tie in with legal advice that for a consultant to prescribe 36 mg a day of Requip XL for 3 years for my husband and deny the drug contributed in any way to his appalling behaviour (50% more than the licensed maximum) is not an offence?
It's great to hear that steps are underway to address the problem but the counselling sounds unworkable and there is no penalty for health professionals and drug companies who ignore the warnings.
But more power to your elbow anyway!
GG
The way i try to look at it is,
Seeking thrills or taking risk should equal some desire for a tangible and meaningful reward. However if your REWARD is just about taking RISK, then you have crossed the line. Whether your then able to stop yourself is a whole different ball game......
Seeking thrills or taking risk should equal some desire for a tangible and meaningful reward. However if your REWARD is just about taking RISK, then you have crossed the line. Whether your then able to stop yourself is a whole different ball game......
Well said GG.
If you paid me to service your car, and I forgot to reconnect the brakes, I'd be guilty of manslaughter if this subsequently caused your death.
If a new supplier of brake fluid told me his product was better than the rest, and I put it in your car without adequate trials, I'd be liable for any subsequent resultant brake failure.
This is normal legal liability, why are consultants any different?
If you paid me to service your car, and I forgot to reconnect the brakes, I'd be guilty of manslaughter if this subsequently caused your death.
If a new supplier of brake fluid told me his product was better than the rest, and I put it in your car without adequate trials, I'd be liable for any subsequent resultant brake failure.
This is normal legal liability, why are consultants any different?
hi GG
Counselling can only fully start once you have a willing party. Someone on the edge of Impulsive and Compulsive Behaviours would certainly benefit from this early counselling intervention.
However somebody who has already disappeared way past the line and who's life is in ruins, is going to need a lot more support than just counselling. This is something the campaign team are working on as part of the awareness campaign. We are developing key partnerships with a number of external agencies such as GamCare, CAB, Legal services commission and other agencies, who will not only be fully aware of this problem but will be on hand to provide help ans give support.
With regard to your husbands neurologist, from what you have told me previously, in my opinion their appears to be a strong smell of what i would describe as clinical negligence or at best incompetence on his part.
best wishes
bluey
Counselling can only fully start once you have a willing party. Someone on the edge of Impulsive and Compulsive Behaviours would certainly benefit from this early counselling intervention.
However somebody who has already disappeared way past the line and who's life is in ruins, is going to need a lot more support than just counselling. This is something the campaign team are working on as part of the awareness campaign. We are developing key partnerships with a number of external agencies such as GamCare, CAB, Legal services commission and other agencies, who will not only be fully aware of this problem but will be on hand to provide help ans give support.
With regard to your husbands neurologist, from what you have told me previously, in my opinion their appears to be a strong smell of what i would describe as clinical negligence or at best incompetence on his part.
best wishes
bluey
You are doing a great job, Blueeyes.
Leigh Day spent a long time looking at our case but the outcome was that no legal action was possible as it is not an offence to prescribe huge overdoses "off-license" as long as appropriate warnings are given.
They weren't but the consultant's computerised notes include " appropriate behavioural warnings given" after each appt.
They would, wouldn't they?
Our word against his and no evidence so no possible action.
Leigh Day spent a long time looking at our case but the outcome was that no legal action was possible as it is not an offence to prescribe huge overdoses "off-license" as long as appropriate warnings are given.
They weren't but the consultant's computerised notes include " appropriate behavioural warnings given" after each appt.
They would, wouldn't they?
Our word against his and no evidence so no possible action.
hi GG
I have a large box in the cubboard full of my case file documents which LeighDay&Co sent me way back in 2007. I spent a year pulling together every bank statement going back 6 years prior to starting on cabergoline in 2002. It showed NO evidence whatsoever of me gambling or leading a compulsive crazy lifestyle. In fect quite the opposite, it showed i was a saver, planner and a finalicaly prudent person.
In contrast my bank staements between 2002/04 when i was taking cabergoline, showed online gambling transactions ammounting to over £1,000,000. Furthermore i gave them bank statements from 2005/07 (post cabergoline), and guess what No gambling.
I also supplied them my medical files going back to 1988 which showed i had NEVER suffered from any form of mental health or behaviour problems. Yet despite this they refused to take on my case any further? They gave 3 main reasons,
1] During the 2 years in which i took cabergoline i had missed a couple of neuro appointments late 2003. Therefore creating a gap of around 6 months in my treatment. The reason for missing those appointmnt was due to financial and logisstical issues, i was homeleess, penniless and living on the streets of london, andmy neuro was in Oxford.
2] a one of
I have a large box in the cubboard full of my case file documents which LeighDay&Co sent me way back in 2007. I spent a year pulling together every bank statement going back 6 years prior to starting on cabergoline in 2002. It showed NO evidence whatsoever of me gambling or leading a compulsive crazy lifestyle. In fect quite the opposite, it showed i was a saver, planner and a finalicaly prudent person.
In contrast my bank staements between 2002/04 when i was taking cabergoline, showed online gambling transactions ammounting to over £1,000,000. Furthermore i gave them bank statements from 2005/07 (post cabergoline), and guess what No gambling.
I also supplied them my medical files going back to 1988 which showed i had NEVER suffered from any form of mental health or behaviour problems. Yet despite this they refused to take on my case any further? They gave 3 main reasons,
1] During the 2 years in which i took cabergoline i had missed a couple of neuro appointments late 2003. Therefore creating a gap of around 6 months in my treatment. The reason for missing those appointmnt was due to financial and logisstical issues, i was homeleess, penniless and living on the streets of london, andmy neuro was in Oxford.
2] a one of
sorry GG i hit the wrong button 
, so this the rest of my post.
2] I admitted sometimes visiting casinos prior to having PD. Yet despite earning over £15,000 a month and never spending more than £200 a month in a casino, they felt it risky to take my case on.
3] This was in my opinion the real reason, legal costs! I was a bankrupt by then and had no legal insurance nor did i qualify for legal aid. Given my legal costs could of ended up 4 or 5 times more than any payout i may of got, they declined to represent me stating my case was financially not worth it for them.
Maybe if prior to having PD i was a virgin who never gambled or drunk alcohol and who had a few million quid lying around then they would of represented me?
, so this the rest of my post.2] I admitted sometimes visiting casinos prior to having PD. Yet despite earning over £15,000 a month and never spending more than £200 a month in a casino, they felt it risky to take my case on.
3] This was in my opinion the real reason, legal costs! I was a bankrupt by then and had no legal insurance nor did i qualify for legal aid. Given my legal costs could of ended up 4 or 5 times more than any payout i may of got, they declined to represent me stating my case was financially not worth it for them.
Maybe if prior to having PD i was a virgin who never gambled or drunk alcohol and who had a few million quid lying around then they would of represented me?
Thanks Blueeyes
It is good to know we are not alone and that tackling the legal redress issue is one you are including in your brief.
Our dealings with Leigh Day re GlaxoSmithKline was similar to yours...proof of the expenditure whilst taking Requip XL etc but they decided no chance of success because damge caused by drug is not an offence. Failint to warn is.
2000-2007 there were no warnings. 2007 first warning appeared but my husband carried on taking it. Despite being virtually insane after 7 years on it this was "proof" that he ignored warnings and would therefore have ignored an earlier warning!
So no case there.
Every solicitor we approached said LD were the specialists and noone else would get involved.
Good luck in your endeavours but it seems the odds are stacked against us.
X
It is good to know we are not alone and that tackling the legal redress issue is one you are including in your brief.
Our dealings with Leigh Day re GlaxoSmithKline was similar to yours...proof of the expenditure whilst taking Requip XL etc but they decided no chance of success because damge caused by drug is not an offence. Failint to warn is.
2000-2007 there were no warnings. 2007 first warning appeared but my husband carried on taking it. Despite being virtually insane after 7 years on it this was "proof" that he ignored warnings and would therefore have ignored an earlier warning!
So no case there.
Every solicitor we approached said LD were the specialists and noone else would get involved.
Good luck in your endeavours but it seems the odds are stacked against us.
X
hi GG
I'm in no way any expert on the law when it comes to suing for damages or negligence! However based on what you have previously said, i would of thought you had a strong case for negligence against your Neuro. The drug companies did indeed put a warning (hidden away on the last page) of medication info leaflets back in 2007.
I'm pretty certain though your husbands neuro was aware of the side effect risk well before 2007? Whether or not he choose to listen or believe it is another matter?
In 2005 i asked the NHS for a complete copy of my medical file which my neuro held. In the file i found cuttings which he had put in after the issue hit the media airwaves big time between 2004 and 2006. The cuttings highlighting the ICB risks and were taken from medical journals and research reports going back to 1998. I even found a cutting he took from a presentation on ICB's side effects that was done at the world PD congress 20 years ago!
If you have not already done so, it might be worth asking the NHS for a copy of your husbands medical file, just to see what his neuro did or did not know. The difference in your husbands case to mine is about 3 or 4 years (2004 to 2007). Any claim you may have must be based on when your husband first became aware of the side effects? Which taking into account the patient info argument would of been in 2007. However given the amount of publicity there was on ICB side effects via public and medical press between 2004 and 2007, i find it somewhat unbelievable his neuro never read or seen anything about ICB side effects!!!
As far as putting this responsibility on your husbands shoulder, your defence should be that between 2004 and 2007 "my husband was by then in a prisoner drug induced dopamine overload".
All the best
bluey
I'm in no way any expert on the law when it comes to suing for damages or negligence! However based on what you have previously said, i would of thought you had a strong case for negligence against your Neuro. The drug companies did indeed put a warning (hidden away on the last page) of medication info leaflets back in 2007.
I'm pretty certain though your husbands neuro was aware of the side effect risk well before 2007? Whether or not he choose to listen or believe it is another matter?
In 2005 i asked the NHS for a complete copy of my medical file which my neuro held. In the file i found cuttings which he had put in after the issue hit the media airwaves big time between 2004 and 2006. The cuttings highlighting the ICB risks and were taken from medical journals and research reports going back to 1998. I even found a cutting he took from a presentation on ICB's side effects that was done at the world PD congress 20 years ago!
If you have not already done so, it might be worth asking the NHS for a copy of your husbands medical file, just to see what his neuro did or did not know. The difference in your husbands case to mine is about 3 or 4 years (2004 to 2007). Any claim you may have must be based on when your husband first became aware of the side effects? Which taking into account the patient info argument would of been in 2007. However given the amount of publicity there was on ICB side effects via public and medical press between 2004 and 2007, i find it somewhat unbelievable his neuro never read or seen anything about ICB side effects!!!
As far as putting this responsibility on your husbands shoulder, your defence should be that between 2004 and 2007 "my husband was by then in a prisoner drug induced dopamine overload".
All the best
bluey
Sorry GG, i meant to say " he was by then already a prisoner to a drug induced dopamine overload".
Thanks Blueeyes.
I will try again but Iwas unable to find a legal firm that would look at the case, apart from LD.
Looking back over the last few posts I think they summarise the OCD/DA behaviour problems and legal hurdles in getting any redress.
I do hope they prove useful to those at the beginning of the journey and warn them enough to seek help as early as possible.
Thank you for all the info and support. It means a lot to us.
GG
X
I will try again but Iwas unable to find a legal firm that would look at the case, apart from LD.
Looking back over the last few posts I think they summarise the OCD/DA behaviour problems and legal hurdles in getting any redress.
I do hope they prove useful to those at the beginning of the journey and warn them enough to seek help as early as possible.
Thank you for all the info and support. It means a lot to us.
GG
X
GG Wrote : "I do hope they prove useful to those at the beginning of the journey and warn them enough to seek help as early as possible. "
I think I am one of those at the beginning of the journey. Let me assure all the contributors to this thread that your efforts, your courage and your openness are providing real benefit. thank you, thank you, thank you - please keep posting.
Elegant Fowl
I think I am one of those at the beginning of the journey. Let me assure all the contributors to this thread that your efforts, your courage and your openness are providing real benefit. thank you, thank you, thank you - please keep posting.
Elegant Fowl
http://www.ncbi.nlm.nih.gov/pubmed/11752114
I came across the above piece of research dating way back to January 2002.
It looks at comparisons between DA's and cocaine in terms of its affect on the brain receptors. I think the last few sentences of the summary page make very interesting reading. Suggesting that dopamine agonists could potentially be used as a replacement drug to cocaine, as part of a treatment programme for cocaine abuse! Much in the same way methadone is used to treat heroin abuse.
So if anyone ever doubted the potential power of dopamine agonist drugs here you have it, a report from 10 years ago comparing DA's to cocaine............
I came across the above piece of research dating way back to January 2002.
It looks at comparisons between DA's and cocaine in terms of its affect on the brain receptors. I think the last few sentences of the summary page make very interesting reading. Suggesting that dopamine agonists could potentially be used as a replacement drug to cocaine, as part of a treatment programme for cocaine abuse! Much in the same way methadone is used to treat heroin abuse.
So if anyone ever doubted the potential power of dopamine agonist drugs here you have it, a report from 10 years ago comparing DA's to cocaine............
http://www.talktofrank.com/drug/cocaine/?&gclid=CPHd3LnIla4CFaQmtAod3g2TIg
Now look at this official Government document about cocaine which was produced as part of a recent drug abuse campaign. Read the list of effects and risks from taking cocaine. Do any of them ring bells in terms of taking DA's......????
One other key factor in the comparison is; It is well known the more cocaine you take the greater the adverse effect it has on behaviour, so the same must be true for those taking high dosages of DA's?
bluey
Now look at this official Government document about cocaine which was produced as part of a recent drug abuse campaign. Read the list of effects and risks from taking cocaine. Do any of them ring bells in terms of taking DA's......????
One other key factor in the comparison is; It is well known the more cocaine you take the greater the adverse effect it has on behaviour, so the same must be true for those taking high dosages of DA's?
bluey
I'm having a thought!
hmmnnn
I wonder how people would fair if they pre-challenged drug companies about the effects of their drugs as they started on their DA's journey?
Ie... I'm about to start on your proven drugs with 1 in 1000 people? warnings about adverse effects and would welcome your response if i and another(or even more) PD sufferers both claim that your drug has/is causing us BOTH adverse desired affects?
This of course would challenge their % claim and leave them in a position of defence of their guided recommendations?
How would they respond to takers of their drugs at what ever dosage they were prescribed (still being within their recommended warnings limit %) constantly challenging their desired effects outcomes?
What i'm getting at is people taking these prescribed drugs continually challenging the drug companies throughout their journeys and making them accountable daily/weekly/monthly/yearly instead of challenging them years down
the line when catastrophic affects have occured and you end up pleading for recompense!
Hopefully there would be more of a solid case for individuals(and their professional challenging bodies) pressing for immediate answers and more so accountability for the drug they have given more odds on for rather than for against odds recommendations and possible warnings for against side effects!!!
Sorry but confusing! yet hope you all get my meaningful thoughts about a different approach to challenging these drug companies.
Best wishes
Diane
hmmnnnI wonder how people would fair if they pre-challenged drug companies about the effects of their drugs as they started on their DA's journey?
Ie... I'm about to start on your proven drugs with 1 in 1000 people? warnings about adverse effects and would welcome your response if i and another(or even more) PD sufferers both claim that your drug has/is causing us BOTH adverse desired affects?
This of course would challenge their % claim and leave them in a position of defence of their guided recommendations?
How would they respond to takers of their drugs at what ever dosage they were prescribed (still being within their recommended warnings limit %) constantly challenging their desired effects outcomes?
What i'm getting at is people taking these prescribed drugs continually challenging the drug companies throughout their journeys and making them accountable daily/weekly/monthly/yearly instead of challenging them years down
the line when catastrophic affects have occured and you end up pleading for recompense!
Hopefully there would be more of a solid case for individuals(and their professional challenging bodies) pressing for immediate answers and more so accountability for the drug they have given more odds on for rather than for against odds recommendations and possible warnings for against side effects!!!
Sorry but confusing! yet hope you all get my meaningful thoughts about a different approach to challenging these drug companies.
Best wishes
Diane
Hi Drobb
You make some interesting points and in theory we should be able to engage with and challenge the drug companies sooner rather than later.
However in my opinion there currently are 2 fundamental obstacles that prevent this from happening. The first issue is one of the emended culture that exists within the pharmaceutical industry. A culture that ultimately ensures this industry is run by people who are driven by profit and shareholder return and not fairness or openness. Secondly the current UK legal system is stacked in favour of big industry and against the average person! This now being the case more than at any time in the last 40 years. Unless of course your a celebrity, very wealthy or a public figure and own a mobile phone!
All the best
bluey
You make some interesting points and in theory we should be able to engage with and challenge the drug companies sooner rather than later.
However in my opinion there currently are 2 fundamental obstacles that prevent this from happening. The first issue is one of the emended culture that exists within the pharmaceutical industry. A culture that ultimately ensures this industry is run by people who are driven by profit and shareholder return and not fairness or openness. Secondly the current UK legal system is stacked in favour of big industry and against the average person! This now being the case more than at any time in the last 40 years. Unless of course your a celebrity, very wealthy or a public figure and own a mobile phone!
All the best
bluey