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Hi Tim.
Thanks for the tool, and for the efforts of those who compiled it.
Whilst it is useful as an aide memoire, and may help in raising the profile of the problem, the questionnaire is essentially naive and too simplistic.
Based on my personal experiences of DA/OCDs over the last decade, as well as those of virtually every other sufferer of these horrific side effects that I've communicated with or whose forum posts I've read, I would expect 99% of forms to be returned with a line of ticked NO boxes.
Patients who complete the form will fall into one of three categories:
1. Those who have not yet taken any DA drugs; these will obviously tick all NOs.
2. Those already taking DA drugs and who are genuinely not experiencing any OCDs; these will also tick all NOs.
3. Those already taking DA drugs who ARE experiencing OCDs. THESE WILL ALSO TICK ALL NOs. Virtually ALL of this group will have become devious, dishonest, lying, cheating, evil, secretive, persuasive and manipulative, and their mental processes will be 100% focussed on continuing to feed their obsessions and compulsions, EVEN THOUGH they may be aware that what they're doing is wrong.
This group too will therefore always tick all the NO boxes.
The tool/qustionnaire will therefore, in reality, serve no constructive purpose other than to provide the consultant with a list of signatures to prove that he/she "did their best" to any subsequent investigation. That's not good enough.
I'm afraid this is a very complex neurological, neuropsychiatric and pharmacological puzzle which needs much more than an A4 YES/NO questionnaire to resolve.
Ray.
Hi Ray
full support to bring on your campaign of warning of this da subject,one da put my life at risk where i was collapsing in recent events.me, family kept telling the hospital of these side-effects which fell on deaf ears and they later admitted it was the agonist,i also take on board that pwp can be okay and not have any side-effects but the distressing side has also got to be told.that is my opinion
full support to bring on your campaign of warning of this da subject,one da put my life at risk where i was collapsing in recent events.me, family kept telling the hospital of these side-effects which fell on deaf ears and they later admitted it was the agonist,i also take on board that pwp can be okay and not have any side-effects but the distressing side has also got to be told.that is my opinion
Dear Tim,
I applaud PUK for the effort made in at least producing the questionnaire. However I'm afraid i totally agree with Ray's comments. The questionnaire is very naive and far to simplistic. It looks like it was put together by people who don't fully understand Addiction or OCD behaviour. Someone suffering from Pathological gambling is just going to tick the NO box every time. Also i cant imagine this form is going to do anything other than skim over the top of multiple and often complex OCD issues.
I got my Uncle who is a Drug and Alcohol Addiction Counsellor with over 20 years experience to look at it. I cant print what he said, needless to say he was not impressed. I notice the Questionnaire was compiled by PUK with the help of two PD Nurses. Don't get me wrong i think its quite right to involve the PD Nurses! However why did you not also involve some pwp who actually experienced OCD side effects from DA's and maybe a Qualified Addiction Counsellor?
I applaud PUK for the effort made in at least producing the questionnaire. However I'm afraid i totally agree with Ray's comments. The questionnaire is very naive and far to simplistic. It looks like it was put together by people who don't fully understand Addiction or OCD behaviour. Someone suffering from Pathological gambling is just going to tick the NO box every time. Also i cant imagine this form is going to do anything other than skim over the top of multiple and often complex OCD issues.
I got my Uncle who is a Drug and Alcohol Addiction Counsellor with over 20 years experience to look at it. I cant print what he said, needless to say he was not impressed. I notice the Questionnaire was compiled by PUK with the help of two PD Nurses. Don't get me wrong i think its quite right to involve the PD Nurses! However why did you not also involve some pwp who actually experienced OCD side effects from DA's and maybe a Qualified Addiction Counsellor?
TIM:
Could the tool be returned to its originator along with our comments and thanks?
We very much appreciate them getting the ball rolling and raising awareness, but the questionnaire's validity is totally based on an incorrect assumption that a patient who has been sucked into "DA/OCD-ism" will answer truthfully.
I can assure you that such patients will NOT do so, and that a lot of time and individually-tailored detective work may be necessary in each case to winkle out the truth - usually in a very hostile and emotional environment.
Regards,
Ray.
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Could the tool be returned to its originator along with our comments and thanks?
We very much appreciate them getting the ball rolling and raising awareness, but the questionnaire's validity is totally based on an incorrect assumption that a patient who has been sucked into "DA/OCD-ism" will answer truthfully.
I can assure you that such patients will NOT do so, and that a lot of time and individually-tailored detective work may be necessary in each case to winkle out the truth - usually in a very hostile and emotional environment.
Regards,
Ray.
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The US journal Archives of Neurology now quotes impulsive control disorders amongst US patients taking dopamine agonists at 17.1%.
The most common disorder, they report, is compulsive buying, followed by gambling, binge eating and hypersexuality. Most patients appear to start with one compulsion but then go on to two or more.
Ray.
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The US journal Archives of Neurology now quotes impulsive control disorders amongst US patients taking dopamine agonists at 17.1%.
The most common disorder, they report, is compulsive buying, followed by gambling, binge eating and hypersexuality. Most patients appear to start with one compulsion but then go on to two or more.
Ray.
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i find this info very interesting & also very worrying (for obvious reasons) Can anybody tell me when does spending become compulsive? Is it when you spend mindlessly,needlessly or above your means? And if progression to other OCDs is likely, is it possible to nip it in the bud? Or is the best way to avoid impending disaster to (with neuro imput) to discontinue DA?
hi annebernadette,
On a scale of 1 to 10, i would say at 1 you could be described as having mild OCD and at 10 it would be classed as Pathological OCD. To give you an example, someone who goes to the Bookies every single Saturday come what may, but keeps his gambling within a pre-set and affordable budget, could be described as being mildly OCD. Then someone who again goes to the Bookies every single Saturday plus a few other days, and spends more than he can afford is now moving up the scale towards developing a serious OCD problem. However the person who goes to the Bookies every single day and gambles WIN or LOSE until they lose every penny is rapidly moving up the OCD scale towards Pathological gambling.
The important point here is many victims of DA's don't realise they are slowly moving up that scale because at some point the objective of gambling to win money is taken over by gambling for the pure thrill of gambling! This also applies to other OCD areas like shopping, sex and eating. I recommend you read the report by Dr Voom i mentioned about in a previous posting, because she conducted research into OCD side effects involving over 3,000 PWP. She said Younger PWP who take DA's are far more likely to develop multiple OCD problems.
On a scale of 1 to 10, i would say at 1 you could be described as having mild OCD and at 10 it would be classed as Pathological OCD. To give you an example, someone who goes to the Bookies every single Saturday come what may, but keeps his gambling within a pre-set and affordable budget, could be described as being mildly OCD. Then someone who again goes to the Bookies every single Saturday plus a few other days, and spends more than he can afford is now moving up the scale towards developing a serious OCD problem. However the person who goes to the Bookies every single day and gambles WIN or LOSE until they lose every penny is rapidly moving up the OCD scale towards Pathological gambling.
The important point here is many victims of DA's don't realise they are slowly moving up that scale because at some point the objective of gambling to win money is taken over by gambling for the pure thrill of gambling! This also applies to other OCD areas like shopping, sex and eating. I recommend you read the report by Dr Voom i mentioned about in a previous posting, because she conducted research into OCD side effects involving over 3,000 PWP. She said Younger PWP who take DA's are far more likely to develop multiple OCD problems.
Thank you Blueeyes47. I find the 1-10 scale very useful. One would have to be scrupulously honest with oneself, and you indicate that this is unlikely in people people who suffer OCD. Therefore the need for impartial monitoring? And I mean truely impartial, by somebody or some agency without their own agenda. I remember well looking at my pain chart after the (difficult) birth of twins to find that the nuse haad rated me at 6.
It would appear to be a hugely difficult task to monitor OCD levels, being both subjective & individuaal, but obviously necessary to avoid anybody reaching their own breaking point
It would appear to be a hugely difficult task to monitor OCD levels, being both subjective & individuaal, but obviously necessary to avoid anybody reaching their own breaking point
I should have said that I personally would have rated the pain during the birth of my boys at off the scale!
Another point that occurs to me is justification. I cannot imagine how this might apply to gambling, eating or sexual behaviour, but I do know that I excuse my increased internet shopping by eg I have lost a considerable amount of weight therefore I need new clothes. And woe betide anybody who ventures to take me to task, despite the fact that most clothes are still in their original wrappers
Another point that occurs to me is justification. I cannot imagine how this might apply to gambling, eating or sexual behaviour, but I do know that I excuse my increased internet shopping by eg I have lost a considerable amount of weight therefore I need new clothes. And woe betide anybody who ventures to take me to task, despite the fact that most clothes are still in their original wrappers
The question you should be asking yourself (while you can) is;
Are you buying the new clothes because you lost the weight and need them? Or are you buying the clothes because it gives you a BIG buzz irrespective of whether you need or can afford them. If the answer is the the latter, then i think your moving up to a 5 or 6 on my scale. The difference between being at a 6 vs a 9 or 10 is, you can still question the rights and wrongs of what your doing. Believe me when somebody moves from OCD behaviour into pathological behaviour they lose the ability to challenge or question anything. At the pathological end of the scale the "switch" in your brain that determines RIGHT from WRONG is turned off............
Are you buying the new clothes because you lost the weight and need them? Or are you buying the clothes because it gives you a BIG buzz irrespective of whether you need or can afford them. If the answer is the the latter, then i think your moving up to a 5 or 6 on my scale. The difference between being at a 6 vs a 9 or 10 is, you can still question the rights and wrongs of what your doing. Believe me when somebody moves from OCD behaviour into pathological behaviour they lose the ability to challenge or question anything. At the pathological end of the scale the "switch" in your brain that determines RIGHT from WRONG is turned off............
Thank you again Blueeyes47, you have distinguished for me the difference between possibly irresponsible and pathological behaviour. I think I was somewhat muddled about it. I also take on board your "while you can"
Hi,
What should i say.
What should i say.
Best say nothing, Titan - unless you like swimming in shark-infested waters!
Hi
Many thanks for for your comments on the assessment tool. I will make sure that I pass these on to the team who developed it. you can also contact them directly at
Professionals @ Parkinsons. org.uk
Tim
forum moderator
Many thanks for for your comments on the assessment tool. I will make sure that I pass these on to the team who developed it. you can also contact them directly at
Professionals @ Parkinsons. org.uk
Tim
forum moderator
Hi titan and Lily
I thought you had both previously agreed, we refrain from Forum "ping pong" on this subject and try to work together in order to better protect people going forward?
Therefore i feel disappointed to read both of your posts this morning. They come across as slightly sarcastic and in particular i personally find Lily's comments quite spiteful. This being in light of her previous comments stating she was "hugely sympathetic" towards victims and "whole heartedly" supported an Awareness campaign.
I thought you had both previously agreed, we refrain from Forum "ping pong" on this subject and try to work together in order to better protect people going forward?
Therefore i feel disappointed to read both of your posts this morning. They come across as slightly sarcastic and in particular i personally find Lily's comments quite spiteful. This being in light of her previous comments stating she was "hugely sympathetic" towards victims and "whole heartedly" supported an Awareness campaign.
Thanks Tim for coming back to us so quickly.
I intend sending my comments and recommendations to the team as you suggest. However could i ask that PUK is open to involving both Victims of OCD side effects and Addiction experts in reviewing this OCD tool?
I intend sending my comments and recommendations to the team as you suggest. However could i ask that PUK is open to involving both Victims of OCD side effects and Addiction experts in reviewing this OCD tool?
Hello Blueeyes
I can assure you that my support for people who have suffered from DAs is genuine, although I cannot accept the draft DA Campaign proposal in its present form as a serious question I asked was never properly answered. Not only that, it was almost instantly dismissed as ‘lobbing in questions’.
It is the aggressive nature of this thread that I have a problem with and no doubt you will ping-pong back an angry reply, but I will not be answering.
Can I just say that, for the sake of your cause, I really feel that you need to foster a less threatening attitude towards your fellow PD-sufferers and learn to recognise them as your allies.
All the best
Lily
I can assure you that my support for people who have suffered from DAs is genuine, although I cannot accept the draft DA Campaign proposal in its present form as a serious question I asked was never properly answered. Not only that, it was almost instantly dismissed as ‘lobbing in questions’.
It is the aggressive nature of this thread that I have a problem with and no doubt you will ping-pong back an angry reply, but I will not be answering.
Can I just say that, for the sake of your cause, I really feel that you need to foster a less threatening attitude towards your fellow PD-sufferers and learn to recognise them as your allies.
All the best
Lily
Having read the thread regarding Annebrenadettes concerns regarding spending and when does one consider excessive spending as OCD. I hope that what I add might also help her to understand the difference between the two.
I am one of the many who has been effected by the OCD of spending/shopping. I have always enjoyed a day out at the shops but as most people do I kept within my means and always needed and used the items that I bought. Whilst I was taking the DA's however that pattern changed. I think my spending must have changed slowly because I cant remeber really when it changed, however, over a period of time I did begin to spend every day. I even went out from work at lunch time and always returned to the office with plenty of bags. Initially I justified the spending as essential items because I had put on weight due to the medications and of course I needed clothing. What actually happened was that over a number of years I had bulging wardrobes and boxes of clothes, some hadn't even been used and still had tags on, so I aboviousley wasnt in dire need of them, as I thought!!
I would dismiss the comments of my husband by getting very angry and causing huge rows because I would accuse him of not wanting me to look nice, ect ect.
By this time I was buying anything, my habit was well above my means, despite having a very well paid job. I would by things even if they didnt fit me and give them away, or I would see something that I thought my daaughters or my friends might like and buy it. My generosity was mind boggling...After a few years of this behaviour, my loft was full of items most of which were never used and still in their original boxes. I funded my habit by obtaining every credit card that I could and because I was credit worthy, I had no problems getting them. My husband knew nothing of our financial status because I had always managed our the family finances. I always went to my appointments with the neuro alone, which was my choice and during those times concerns about OCD were never mentioned and of course at that time they were'nt even included within the written advice with the meds.
On one occassion my husband insited that he attend the neuro appointment with me. During the session the neuro asked him directly if he had any concerns regarding my PD. Hubby laughed and said 'if you can stop her spending, that would be great'....That was the trigger, neuro's pen went down and he said 'tell me more'. by then I was kicking hubby under the desk, I felt like a naughty child who had been caught out.
Cutting a long story short, the DA's were stopped and I returned to being myself again. However the £60,000 worth of debt didnt go away, we had to deal with it and to this day, still are.
I hope this might help you Annebernadette, as it would seem to me that you are looking for a guidline to determine if your own spending is OCD or not. When it happened to me there was no mention ever of OCD being a possible side effect of the meds, I am sure if we had been warned, my hubby could have recognised the syptoms much earlier and we would be in a much better position today.
I am one of the many who has been effected by the OCD of spending/shopping. I have always enjoyed a day out at the shops but as most people do I kept within my means and always needed and used the items that I bought. Whilst I was taking the DA's however that pattern changed. I think my spending must have changed slowly because I cant remeber really when it changed, however, over a period of time I did begin to spend every day. I even went out from work at lunch time and always returned to the office with plenty of bags. Initially I justified the spending as essential items because I had put on weight due to the medications and of course I needed clothing. What actually happened was that over a number of years I had bulging wardrobes and boxes of clothes, some hadn't even been used and still had tags on, so I aboviousley wasnt in dire need of them, as I thought!!
I would dismiss the comments of my husband by getting very angry and causing huge rows because I would accuse him of not wanting me to look nice, ect ect.
By this time I was buying anything, my habit was well above my means, despite having a very well paid job. I would by things even if they didnt fit me and give them away, or I would see something that I thought my daaughters or my friends might like and buy it. My generosity was mind boggling...After a few years of this behaviour, my loft was full of items most of which were never used and still in their original boxes. I funded my habit by obtaining every credit card that I could and because I was credit worthy, I had no problems getting them. My husband knew nothing of our financial status because I had always managed our the family finances. I always went to my appointments with the neuro alone, which was my choice and during those times concerns about OCD were never mentioned and of course at that time they were'nt even included within the written advice with the meds.
On one occassion my husband insited that he attend the neuro appointment with me. During the session the neuro asked him directly if he had any concerns regarding my PD. Hubby laughed and said 'if you can stop her spending, that would be great'....That was the trigger, neuro's pen went down and he said 'tell me more'. by then I was kicking hubby under the desk, I felt like a naughty child who had been caught out.
Cutting a long story short, the DA's were stopped and I returned to being myself again. However the £60,000 worth of debt didnt go away, we had to deal with it and to this day, still are.
I hope this might help you Annebernadette, as it would seem to me that you are looking for a guidline to determine if your own spending is OCD or not. When it happened to me there was no mention ever of OCD being a possible side effect of the meds, I am sure if we had been warned, my hubby could have recognised the syptoms much earlier and we would be in a much better position today.
Lily to be honest i have better things to do than play ping pong with you.
In my humble opinion i don't believe your "hugely sympathetic" towards those who have or still are suffering serious OCD side effects caused by DA's. Nor do i believe you want to "whole heartedly" support (in any meaningful way) a campaign to raise awareness and stop this issue from being swept under the carpet, by holding Medical professionals more accountable.
Finally you accuse me of being "aggressive" and sending you an "angry reply." Well i think that's quite funny coming from someone who just labelled me as a "Shark"..........
In my humble opinion i don't believe your "hugely sympathetic" towards those who have or still are suffering serious OCD side effects caused by DA's. Nor do i believe you want to "whole heartedly" support (in any meaningful way) a campaign to raise awareness and stop this issue from being swept under the carpet, by holding Medical professionals more accountable.
Finally you accuse me of being "aggressive" and sending you an "angry reply." Well i think that's quite funny coming from someone who just labelled me as a "Shark"..........
The campaign objectives are still in draft form, and available on the other thread. Comments/suggestions from anyone very welcome - the more the better.
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