Hi Ray and all
I had a consultation with my neurologist yesterday with the intentions of starting PD medication. I mentioned Azilect as you had suggested to me Ray in an earlier post but she said it wasn't a drug that was easily prescribed and said I would start on ropinerole. She did mention OCD's and my daughter was with me who said she would look out for any signs.
I was still a bit dubious so she is arranging an appointment with the PD nurse (I didn't know there was one in the hospital) and I can chat to her before making any decisions.
I just can't bring myself to start the medication and I dont know why. Maybe I'm in denial
It seems the younger you are the more they want to hold back on the L-Dopa based medication until later. Hence the more likely they are to want to put you on DAs right now. Can I ask your age?
Why don't you tell your daughter about this forum? She doesn't need to be a member just to browse, and it'll give her an insight into your concerns. The same applies to your PD Nurse and Consultant if they've not been aware of us until now.
And don't forget that our own Helpline can put you in touch with a fully qualified PD Nurse, anonymously if you prefer it that way.
Ray.
Why don't you tell your daughter about this forum? She doesn't need to be a member just to browse, and it'll give her an insight into your concerns. The same applies to your PD Nurse and Consultant if they've not been aware of us until now.
And don't forget that our own Helpline can put you in touch with a fully qualified PD Nurse, anonymously if you prefer it that way.
Ray.
I'm 59 Ray and will be 60 In October this year and I still work full-time. I did phone the help-line and a very nice PD nurse called me and assured me that I will probably benefit by starting the meds now so the ball is firmly in my court (very apt seeing as its Wimbledon week)
I'm 61 next month, slightly ahead of you, but I gave up work at 53. Mind you that was all thanks to the DAs!
I came off the DAs in late 2007, switching to Sinemet with Entacapone, and Azilect.
Good luck in your deliberations.
Ray.
I came off the DAs in late 2007, switching to Sinemet with Entacapone, and Azilect.
Good luck in your deliberations.
Ray.
Just a note to update those of you who have so kindly supported my husband and me through the rollercoaster of OCDs and their withdrawal.
There have been some blips in the fight against the sexual urges,( compulsions to return to some of the activities and secrecy about some behaviour) and today we saw our new neurologist for the second time. The Sinemet dose is the maximum licensed and it is to be lowered over 2 months by 20%. He told us that the drug he would like to use is not allowed in our area because they can't afford the regular blood tests it requires.
It is Clozapine, used for schizophrenia, and is used in Parkinson's for drug-induced psychosis.
It is effective in stopping the OCDs caused by DAs but is only used in a very few areas in this way.The only alternative drugs he is allowed to prescribe to lessen the OCDs make the Parkinson's symptoms worse!
I have never read anything about this in the Parkinson's literature.
Anyone tried it?
He said he couldn't refer us to a hospital in another area because they wouldn't pay for the blood tests.
How mysterious it all is!
Anyway we muddle on. Good days and bad days.
You've all been there.Take care. X
There have been some blips in the fight against the sexual urges,( compulsions to return to some of the activities and secrecy about some behaviour) and today we saw our new neurologist for the second time. The Sinemet dose is the maximum licensed and it is to be lowered over 2 months by 20%. He told us that the drug he would like to use is not allowed in our area because they can't afford the regular blood tests it requires.
It is Clozapine, used for schizophrenia, and is used in Parkinson's for drug-induced psychosis.
It is effective in stopping the OCDs caused by DAs but is only used in a very few areas in this way.The only alternative drugs he is allowed to prescribe to lessen the OCDs make the Parkinson's symptoms worse!
I have never read anything about this in the Parkinson's literature.
Anyone tried it?
He said he couldn't refer us to a hospital in another area because they wouldn't pay for the blood tests.
How mysterious it all is!
Anyway we muddle on. Good days and bad days.
You've all been there.Take care. X
Hi.
The reasons DAs are so popular with neurologists - particularly as the initial medication for newly-diagnosed young-onset patients - are clear and simple:
1. They delay the need for L-Dopa, which infamously loses efficacy over time.
2. They are REALLY GOOD at handling PD symptoms, and improving life quality.
THERE IS NO DISPUTE that dopamine agonists do the job they were intended to do, and do it very well indeed. WE ARE ALL AGREED ON THIS. For thousands of DA takers their introduction has been a revelation. I myself was transformed in a few days from an incomprehensible, chin-hanging, stooping shuffler to a coherent, smiling individual well capable of driving, running for a bus or coping with intercontinental travel.
The problem, as we all know, is that 25% of DA takers WILL as a direct result suffer from OCDs to some degree. Many, like me, to catastrophic and life-destroying levels.
Once it has been discovered that a patient IS one of the unlucky ones, and seriously affected, there can (imho) be no tinkering with DA dosage levels to try to achieve a satisfactory balance between the super mobility DAs offer and an "acceptable" level of OCDs. Many Neuros - attempting to allay the fears of their clients and convince them everything can be fine - disagree with this, and claim that a happy medium CAN be achieved.
I refute this totally. In court (and subsequently in private discussions with me) an eminent Professor of Neurology explained in detail how the brains of those susceptible to the OCD side effects of DAs are permanently altered with respect to any future contact between them and DAs. Apparently once you have come off your DA completely you can nonetheless be "hooked in" again within hours - even years later - by even a minimal, one-off dose. Just as might be the case with an alcoholic or a heroin user.
In my case the professor suggested that even one 0.5mg Cabergoline tablet could be enough to drag me back.
My conclusions are therefore without doubt:
3. There is NO safe DA dosage level for those who find themselves in the unlucky 25% susceptible to their side effects.
4. If you KNOW you're in that group you can only be sure of staying clear of DA OCDs if you never, EVER touch so much as a milligram again.
5. Unlike the lucky 75%, you will unfortunately NEVER be able to enjoy BOTH the splendid improvements to your PD symptoms which DAs offer others, AND remain clear of OCDs.
Unpalatable and unfair as it is, it's a clear choice. In order to rid yourself of the evils of the OCDs you are going to have to give up all the mobility improvements which also came with the DA. One or the other. That's why I'm stuck indoors about 360 days a year: frustrated, but (imho) still sane!
For the unlucky 25% it's all or nothing:
DAs mean both Madness AND Mobility, or Neither.
Ray.
The reasons DAs are so popular with neurologists - particularly as the initial medication for newly-diagnosed young-onset patients - are clear and simple:
1. They delay the need for L-Dopa, which infamously loses efficacy over time.
2. They are REALLY GOOD at handling PD symptoms, and improving life quality.
THERE IS NO DISPUTE that dopamine agonists do the job they were intended to do, and do it very well indeed. WE ARE ALL AGREED ON THIS. For thousands of DA takers their introduction has been a revelation. I myself was transformed in a few days from an incomprehensible, chin-hanging, stooping shuffler to a coherent, smiling individual well capable of driving, running for a bus or coping with intercontinental travel.
The problem, as we all know, is that 25% of DA takers WILL as a direct result suffer from OCDs to some degree. Many, like me, to catastrophic and life-destroying levels.
Once it has been discovered that a patient IS one of the unlucky ones, and seriously affected, there can (imho) be no tinkering with DA dosage levels to try to achieve a satisfactory balance between the super mobility DAs offer and an "acceptable" level of OCDs. Many Neuros - attempting to allay the fears of their clients and convince them everything can be fine - disagree with this, and claim that a happy medium CAN be achieved.
I refute this totally. In court (and subsequently in private discussions with me) an eminent Professor of Neurology explained in detail how the brains of those susceptible to the OCD side effects of DAs are permanently altered with respect to any future contact between them and DAs. Apparently once you have come off your DA completely you can nonetheless be "hooked in" again within hours - even years later - by even a minimal, one-off dose. Just as might be the case with an alcoholic or a heroin user.
In my case the professor suggested that even one 0.5mg Cabergoline tablet could be enough to drag me back.
My conclusions are therefore without doubt:
3. There is NO safe DA dosage level for those who find themselves in the unlucky 25% susceptible to their side effects.
4. If you KNOW you're in that group you can only be sure of staying clear of DA OCDs if you never, EVER touch so much as a milligram again.
5. Unlike the lucky 75%, you will unfortunately NEVER be able to enjoy BOTH the splendid improvements to your PD symptoms which DAs offer others, AND remain clear of OCDs.
Unpalatable and unfair as it is, it's a clear choice. In order to rid yourself of the evils of the OCDs you are going to have to give up all the mobility improvements which also came with the DA. One or the other. That's why I'm stuck indoors about 360 days a year: frustrated, but (imho) still sane!
For the unlucky 25% it's all or nothing:
DAs mean both Madness AND Mobility, or Neither.
Ray.
GG.
I've been reading up on Clozapine. A good summary in Wikipedia, and there are several medical papers. Personally I wouldn't touch it with a bargepole - it looks bloody dangerous to me, and can mess up your white blood cells.
It seems to be on the market without full approval yet, certainly not for Parkinson's, and appears to be still going through the testing stages. Trial results so far don't appear to be very impressive.
Suggest you discuss with a qualified PD Nurse via our Help Line.
Ray.
I've been reading up on Clozapine. A good summary in Wikipedia, and there are several medical papers. Personally I wouldn't touch it with a bargepole - it looks bloody dangerous to me, and can mess up your white blood cells.
It seems to be on the market without full approval yet, certainly not for Parkinson's, and appears to be still going through the testing stages. Trial results so far don't appear to be very impressive.
Suggest you discuss with a qualified PD Nurse via our Help Line.
Ray.
Hi Ray,
You've done much to publicise your findings and bravely revealed to us the extent of the catastrophic results of your experience with D.A.s
I feel you paint an unreasonably black picture to all those people now taking meds in this group.
We've been alerted to the warning signs, and in spite of what you may think, many people have very good Neurologists, family that are aware of possible O.C.D. tendencies and the media is also more instrumental now at publicising this information.
It is doubly difficult , for newly prescribed people to get on with what fate has dished up to them, and now , some on a relatively small amount of d.a. medication , are constantly becoming "Obsessively" worried , thinking 'Is all this bad stuff going to happen to me ?'
Yes . I am suggesting there is a danger now of self fulfilling prophesy coming into fruition.
The under 50's who receive the dx of pd. understandably want to delay Levadopa for as long as possible.
I don't believe they should be frightened into stopping their D.A. medication , and facing the distressing consequences of so doing. Information , observation and monitoring, of course I agree with . But fear , is not the right tool for the job.
All the best
Lorna.
You've done much to publicise your findings and bravely revealed to us the extent of the catastrophic results of your experience with D.A.s
I feel you paint an unreasonably black picture to all those people now taking meds in this group.
We've been alerted to the warning signs, and in spite of what you may think, many people have very good Neurologists, family that are aware of possible O.C.D. tendencies and the media is also more instrumental now at publicising this information.
It is doubly difficult , for newly prescribed people to get on with what fate has dished up to them, and now , some on a relatively small amount of d.a. medication , are constantly becoming "Obsessively" worried , thinking 'Is all this bad stuff going to happen to me ?'
Yes . I am suggesting there is a danger now of self fulfilling prophesy coming into fruition.
The under 50's who receive the dx of pd. understandably want to delay Levadopa for as long as possible.
I don't believe they should be frightened into stopping their D.A. medication , and facing the distressing consequences of so doing. Information , observation and monitoring, of course I agree with . But fear , is not the right tool for the job.
All the best
Lorna.
Morning Lorna, I was expecting you.
(1) Yes, I've done what little I can to publicise what I've been through. It's just about all I can do to help others avoid the same fate. I'm glad to say my efforts have been reasonably successful, and I have for certain saved a number of couples and individuals (including Goldengirl + 1) from disaster, financial ruin, divorce and in at lease one case suicide. I have never received a penny for my efforts.
(2) I disagree with your assertion that I paint an unreasonably black picture. I accept that I do sometimes paint such a picture, but it is NEVER "unreasonable". In Feb 2011 the Mayo Clinic in Rochester, USA - one of the most respected research institutes in the world - published the revised figure of 24% of DA patients being susceptible to OCDs. You have the details. You will also be aware that every time new results are published the percentage goes up. It has NEVER gone down. How can keeping others informed of relevant and verified statistical changes be "unreasonable"? Incidentally I first learned of the new figures from a posting on this forum by another member.
(3) Yes, many people DO, as you say, have VERY good Neurologists. Equally many still have very poor ones (including mine) who are STILL not keeping their patients properly informed. We still regularly receive feedback from newly-diagnosed patients saying they were told nothing, and that this forum was the first place they heard about these risks. They also often make remarks like "Aha, that must be why he's been spending a lot lately - I had no idea this was anything to do with his illness or medication."
(4) You state that "The media is also more instrumental now at publicising this information." Where? When? A few minor articles in the middle of The Guardian? A few 10-minute fillers on BBCTV (the first being on 11/08/03) or the radio. The ONLY time the issue has hit the front pages as far as I'm aware was my own case, when the gutter reporters went to town describing me as a fraudster, a hoodwinker of judges and a cross-dressing pervert. And as I've said before, I've never asked for, or received, a penny for all that grotesque coverage. A "more instrumental media"? Don't think so.
(5)You suggest that "newly prescribed people......are constantly becoming obsessively worried". Can we see some figures please? How many? How worried? I believe you've come to this conclusion by simply chatting to a few would-be "do-gooders" who like to think they're somehow protecting the newbies from the "nasty-story man". Everything they need to know is on this forum NOW: the risks, what to do, whom to contact, alternatives, the lot. All they have to do is learn to search and read it all, it speaks for itself. The knowledge, experience, scientific data and legal involvement I can offer is REAL, learned over 7 years of mental torture, and available to them for free from those who have the T-shirt. Those who advise them to ignore all that evidence are basing their naive platitudes on a foundation of zero experience and undergrad level hypothesising. Is that wise?
(6) Your suggestion that our efforts are turning into a "self fulfilling prophesy(sic)" don't even make sense. Am I driving people OFF the DAs who were otherwise destined to join the 24%? Good. Am I driving people OFF the DAs who could safely have joined the lucky 76%, and who will therefore be deprived of the POSITIVE benefits of the DAs? I don't think so (glad to see any evidence to this effect, though, particularly if you're claiming that more people are being unnecessarily driven off DAs by me than the numbers I'm saving from hideous fates). Fear? No. Take a few milligrams of Cabergoline - I'll show you fear.
(7) I made it very clear in my post at 23:35 on 29/6/11 that I accept the Neuros' desire to delay introducing levodopa as long as possible, particularly as the positive effects of the DAs can be so beneficial. However I don't accept your claim that "The Under 50s who receive the dx of PD understandably want to delay Levodopa for as long as possible." They don't, because they don't understand it all yet. They invariably, in all the mayhem, just want to be told by their Neurologist what course of action he will be instigating. They trust his opinion and decision implicitly, although often this trust is undeserved. We all know that there are as many opinions out there as Neurologists, and they vary enormously. Treatment suggestions can vary from "You won't need to go onto medication for a couple of years" to "We MUST get you in IMMEDIATELY for Deep Brain Stimulation." (A slight exaggeration, but you get my drift).
Finally, I'm not using fear. I'm using knowledge, understanding and education where so-called experts have failed to do their jobs properly and responsibly. Yes, the subject matter IS scary, but that's hardly MY fault. Nor is it good reason for others to wrap the babies up in cotton wool and pretend all is sweetness and light. It isn't.
Regards,
Ray.
(1) Yes, I've done what little I can to publicise what I've been through. It's just about all I can do to help others avoid the same fate. I'm glad to say my efforts have been reasonably successful, and I have for certain saved a number of couples and individuals (including Goldengirl + 1) from disaster, financial ruin, divorce and in at lease one case suicide. I have never received a penny for my efforts.
(2) I disagree with your assertion that I paint an unreasonably black picture. I accept that I do sometimes paint such a picture, but it is NEVER "unreasonable". In Feb 2011 the Mayo Clinic in Rochester, USA - one of the most respected research institutes in the world - published the revised figure of 24% of DA patients being susceptible to OCDs. You have the details. You will also be aware that every time new results are published the percentage goes up. It has NEVER gone down. How can keeping others informed of relevant and verified statistical changes be "unreasonable"? Incidentally I first learned of the new figures from a posting on this forum by another member.
(3) Yes, many people DO, as you say, have VERY good Neurologists. Equally many still have very poor ones (including mine) who are STILL not keeping their patients properly informed. We still regularly receive feedback from newly-diagnosed patients saying they were told nothing, and that this forum was the first place they heard about these risks. They also often make remarks like "Aha, that must be why he's been spending a lot lately - I had no idea this was anything to do with his illness or medication."
(4) You state that "The media is also more instrumental now at publicising this information." Where? When? A few minor articles in the middle of The Guardian? A few 10-minute fillers on BBCTV (the first being on 11/08/03) or the radio. The ONLY time the issue has hit the front pages as far as I'm aware was my own case, when the gutter reporters went to town describing me as a fraudster, a hoodwinker of judges and a cross-dressing pervert. And as I've said before, I've never asked for, or received, a penny for all that grotesque coverage. A "more instrumental media"? Don't think so.
(5)You suggest that "newly prescribed people......are constantly becoming obsessively worried". Can we see some figures please? How many? How worried? I believe you've come to this conclusion by simply chatting to a few would-be "do-gooders" who like to think they're somehow protecting the newbies from the "nasty-story man". Everything they need to know is on this forum NOW: the risks, what to do, whom to contact, alternatives, the lot. All they have to do is learn to search and read it all, it speaks for itself. The knowledge, experience, scientific data and legal involvement I can offer is REAL, learned over 7 years of mental torture, and available to them for free from those who have the T-shirt. Those who advise them to ignore all that evidence are basing their naive platitudes on a foundation of zero experience and undergrad level hypothesising. Is that wise?
(6) Your suggestion that our efforts are turning into a "self fulfilling prophesy(sic)" don't even make sense. Am I driving people OFF the DAs who were otherwise destined to join the 24%? Good. Am I driving people OFF the DAs who could safely have joined the lucky 76%, and who will therefore be deprived of the POSITIVE benefits of the DAs? I don't think so (glad to see any evidence to this effect, though, particularly if you're claiming that more people are being unnecessarily driven off DAs by me than the numbers I'm saving from hideous fates). Fear? No. Take a few milligrams of Cabergoline - I'll show you fear.
(7) I made it very clear in my post at 23:35 on 29/6/11 that I accept the Neuros' desire to delay introducing levodopa as long as possible, particularly as the positive effects of the DAs can be so beneficial. However I don't accept your claim that "The Under 50s who receive the dx of PD understandably want to delay Levodopa for as long as possible." They don't, because they don't understand it all yet. They invariably, in all the mayhem, just want to be told by their Neurologist what course of action he will be instigating. They trust his opinion and decision implicitly, although often this trust is undeserved. We all know that there are as many opinions out there as Neurologists, and they vary enormously. Treatment suggestions can vary from "You won't need to go onto medication for a couple of years" to "We MUST get you in IMMEDIATELY for Deep Brain Stimulation." (A slight exaggeration, but you get my drift).
Finally, I'm not using fear. I'm using knowledge, understanding and education where so-called experts have failed to do their jobs properly and responsibly. Yes, the subject matter IS scary, but that's hardly MY fault. Nor is it good reason for others to wrap the babies up in cotton wool and pretend all is sweetness and light. It isn't.
Regards,
Ray.
contemplating!
Ray,
Why the need for such an onslaught.Will respond from the front line,lets say from pushing the boundaries.Thoughts are many.One of them is your need to over pursue an issue that although important,is still not as Black and White as you make out.
DA,s,madness and mobility.?
Monitored,mobilize,miraculous,manage,maintain in many cases.
Contributory factors i believe muddy the waters.You probably will quote me amongst figures,the jury is out.Issues beyond your knowledge i have delved deeply into.Madness you may throw back at me,i am the most sane mad person then,people have issues in their lives which confound the taking of any drug.Life deals cruel blows at the most inconvenient of times,consider these factors before throwing everyone into the one way statistical melting pot.
Lorna,
Yes,you are correct,under 50,s(including myself) do want to delay levadopa.Also confirmed by my neurologist.
You are correct,i also believe,that Ray is painting a blacker picture than necessary.There are many contributory factors surrounding this issue.Believe me i am observing and noting everything on a DA journey,which i believe is crucially tied in with the personal make up and experiences of those taking it.
Still contemplating
All the best
Titan to Lorna x
Ray,
Why the need for such an onslaught.Will respond from the front line,lets say from pushing the boundaries.Thoughts are many.One of them is your need to over pursue an issue that although important,is still not as Black and White as you make out.
DA,s,madness and mobility.?
Monitored,mobilize,miraculous,manage,maintain in many cases.
Contributory factors i believe muddy the waters.You probably will quote me amongst figures,the jury is out.Issues beyond your knowledge i have delved deeply into.Madness you may throw back at me,i am the most sane mad person then,people have issues in their lives which confound the taking of any drug.Life deals cruel blows at the most inconvenient of times,consider these factors before throwing everyone into the one way statistical melting pot.
Lorna,
Yes,you are correct,under 50,s(including myself) do want to delay levadopa.Also confirmed by my neurologist.
You are correct,i also believe,that Ray is painting a blacker picture than necessary.There are many contributory factors surrounding this issue.Believe me i am observing and noting everything on a DA journey,which i believe is crucially tied in with the personal make up and experiences of those taking it.
Still contemplating
All the best
Titan to Lorna x
Titan.
Oh no, not the dreaded two-pronged attack again (probably more when the cohorts and reinforcements arrive), give me a break you guys!
I was responding to a number of queries from Goldengirl, no-one else, and making my own position clear for her in case she finds herself up against both her o/h AND the neurologist. She is still having serious OCD problems (libido, deviousness, etc) with her o/h, who is still insisting upon clinging onto the last dregs of his DA dose.
The "onslaught" you refer to - if indeed there was one - came out of the blue from Lorna in the middle of the night. No provocation whatsoever. However it did contain a lot of stuff which needed to be replied to, so I did:
She is incorrect in describing the information I sometimes give newbies as "unreasonable". Scary maybe, but the risks ARE scary, bloody scary.
She is wrong to imply that ill-informed or arrogant Neuros are no longer a problem.
She is wrong to imply that we now get adequate media coverage. We get sensationalist cack and little else. I challenge you to ask 100 people in the street what they know about Parkinson's, DAs and OCDs, and get a positive response from more than one person. Great media coverage!
If newbies are becoming worried as a result of the way you claim I'm portraying this major problem it's not MY fault. They should have been told everything long before then by their consultants.
I have always understood the desire to leave the take-up of levodopa as late as possible, so I don't know why this is mentioned. However if someone is unable to take DAs at all, the Neuro will be hard pushed to provide a reasonable solution for the patient without L-Dopa.
I am NOT frightening people into pulling off DAs without reason. Sometimes I may give them a quick shake if they've been told nothing by their Neuro and haven't yet grasped the seriousness of the potential threat, but I do NOT use fear as a tool with which to achieve my evil ends.
Why would I do all this if I didn't believe passionately in it, and know for certain - from REAL, long-term experience - that what I say is true? I'm sorry, but I'm unable to just leave PWP to rot at the wayside.
It seems that whenever I post an opinion on here, WHOEVER it's for, you guys feel the need to step in. What's daft is that if Lorna perceives anything as a criticism of YOUR standpoint she leaps to YOUR defence, and vice versa. Yet all the time I'm actually in dialogue with others who already share my convictions. No involvement from your group of vigilantes required or wanted.
As for your own comments:
I am not over-pursuing anything. I've already explained that this was a dialogue between GG and me. Your involvement was neither wanted or necessary. It was, in fact, quite provocative.
I've also stated in the past my belief that the issue needs to be discussed here on a frequent and regular basis, to keep it at the forefront and therefore easily seen and considered by newcomers. I intend to do this whether or not it meets your approval.
Many thanks for your offer, but I'm happy to select which words to use by myself. In general, as I'm dealing with ordinary folk, I use words colloquially, so the likes of "mad" and "sane" are intended to convey the meaning they would normally have for that good old man in the street again, not their carefully defined scientific definition. If you feel it adds to your case to spend your days seeking exact scientific definitions and then attempting to out-debate me with your findings, plough on my friend.
Your last 10 lines are most touching.
Take care,
Ray.
Oh no, not the dreaded two-pronged attack again (probably more when the cohorts and reinforcements arrive), give me a break you guys!
I was responding to a number of queries from Goldengirl, no-one else, and making my own position clear for her in case she finds herself up against both her o/h AND the neurologist. She is still having serious OCD problems (libido, deviousness, etc) with her o/h, who is still insisting upon clinging onto the last dregs of his DA dose.
The "onslaught" you refer to - if indeed there was one - came out of the blue from Lorna in the middle of the night. No provocation whatsoever. However it did contain a lot of stuff which needed to be replied to, so I did:
She is incorrect in describing the information I sometimes give newbies as "unreasonable". Scary maybe, but the risks ARE scary, bloody scary.
She is wrong to imply that ill-informed or arrogant Neuros are no longer a problem.
She is wrong to imply that we now get adequate media coverage. We get sensationalist cack and little else. I challenge you to ask 100 people in the street what they know about Parkinson's, DAs and OCDs, and get a positive response from more than one person. Great media coverage!
If newbies are becoming worried as a result of the way you claim I'm portraying this major problem it's not MY fault. They should have been told everything long before then by their consultants.
I have always understood the desire to leave the take-up of levodopa as late as possible, so I don't know why this is mentioned. However if someone is unable to take DAs at all, the Neuro will be hard pushed to provide a reasonable solution for the patient without L-Dopa.
I am NOT frightening people into pulling off DAs without reason. Sometimes I may give them a quick shake if they've been told nothing by their Neuro and haven't yet grasped the seriousness of the potential threat, but I do NOT use fear as a tool with which to achieve my evil ends.
Why would I do all this if I didn't believe passionately in it, and know for certain - from REAL, long-term experience - that what I say is true? I'm sorry, but I'm unable to just leave PWP to rot at the wayside.
It seems that whenever I post an opinion on here, WHOEVER it's for, you guys feel the need to step in. What's daft is that if Lorna perceives anything as a criticism of YOUR standpoint she leaps to YOUR defence, and vice versa. Yet all the time I'm actually in dialogue with others who already share my convictions. No involvement from your group of vigilantes required or wanted.
As for your own comments:
I am not over-pursuing anything. I've already explained that this was a dialogue between GG and me. Your involvement was neither wanted or necessary. It was, in fact, quite provocative.
I've also stated in the past my belief that the issue needs to be discussed here on a frequent and regular basis, to keep it at the forefront and therefore easily seen and considered by newcomers. I intend to do this whether or not it meets your approval.
Many thanks for your offer, but I'm happy to select which words to use by myself. In general, as I'm dealing with ordinary folk, I use words colloquially, so the likes of "mad" and "sane" are intended to convey the meaning they would normally have for that good old man in the street again, not their carefully defined scientific definition. If you feel it adds to your case to spend your days seeking exact scientific definitions and then attempting to out-debate me with your findings, plough on my friend.
Your last 10 lines are most touching.
Take care,
Ray.
I can of course see both sides of this argument, but yesterday I happened to be researching side effects of Levadopa and DA's.
The effects of Levadopa were well documented, but mainly the positives of DA's mentioned. Sickness was the only detrimental comment and not once did I see any mention of obsessive compulsive behaviour.
The obvious conclusion of which is that there aren't enough warnings about the side effects of DA's. In fairness I have to say that when o/h was first diagnosed we were never informed of any other side effect of Sinemet other than sickness by neuro or PD nurse. Nor did any publication that we were given by the hospital, PD nurse or mental health care staff make reference to the bad effects.
Only when o/h exhibited hallucinations were we made aware that they were caused by the medication.
The effects of Levadopa were well documented, but mainly the positives of DA's mentioned. Sickness was the only detrimental comment and not once did I see any mention of obsessive compulsive behaviour.
The obvious conclusion of which is that there aren't enough warnings about the side effects of DA's. In fairness I have to say that when o/h was first diagnosed we were never informed of any other side effect of Sinemet other than sickness by neuro or PD nurse. Nor did any publication that we were given by the hospital, PD nurse or mental health care staff make reference to the bad effects.
Only when o/h exhibited hallucinations were we made aware that they were caused by the medication.
I agree with Ray completely, he isn't trying to scare people from taking DA's because he clearly states that for those who are able to tolerate them they are a god send and give people with PD a good quality of life. There is no denying this, however, for those who are intolerable to them they can have devastating consequences. I have made no secret of my own experiences of taking DA's and of the mess my life is still in after many years of being off them.
Ray's anger is aimed at the doctors who still do not inform patients of the risks and those that are still unable to accept the devastation they cause. I have recently changed neuro's and my new one actually wanted me to try them again and worse still thought it quite amusing when I told him of my previous OCD behaviors!!!!!
Titan, you seem to be one that has gained through discussions and information provided by those that have been affected by OCD behaviors and as a result have been able to recognize the traits in your own behavior. This has enabled you to monitor and address them, thus gaining control. Some are not that lucky, Ray is one, as am I and as you know there are many many more. I only wish I had been informed of the negative sides of these meds before I took them, if I had my life would have taken a very different path.
There is no denying that we are, in the main, an angry lot of people, I don't deny my anger and resentment at being led by the nose into the bowels of hell and I would refute anybody that had lost their entire lives and livelihoods because of medical incompetence not to be. If that anger shows in our posts we make no apologies and I would hope that perhaps some of you will understand why, we have lost far too much just to be told to 'move on'.
To all newbies out there, yes, DA's are a wonder drug and they do change the lives of people with PD, all we ask is that you never take the DA's without having some way of assessing your behaviors on a DAILY basis, if you do then there may well be consequences.
I make no apologies for my statements because I, like many others, don't make them as a result of research, I make them from my heart because of my experiences.
Glenchass
Ray's anger is aimed at the doctors who still do not inform patients of the risks and those that are still unable to accept the devastation they cause. I have recently changed neuro's and my new one actually wanted me to try them again and worse still thought it quite amusing when I told him of my previous OCD behaviors!!!!!
Titan, you seem to be one that has gained through discussions and information provided by those that have been affected by OCD behaviors and as a result have been able to recognize the traits in your own behavior. This has enabled you to monitor and address them, thus gaining control. Some are not that lucky, Ray is one, as am I and as you know there are many many more. I only wish I had been informed of the negative sides of these meds before I took them, if I had my life would have taken a very different path.
There is no denying that we are, in the main, an angry lot of people, I don't deny my anger and resentment at being led by the nose into the bowels of hell and I would refute anybody that had lost their entire lives and livelihoods because of medical incompetence not to be. If that anger shows in our posts we make no apologies and I would hope that perhaps some of you will understand why, we have lost far too much just to be told to 'move on'.
To all newbies out there, yes, DA's are a wonder drug and they do change the lives of people with PD, all we ask is that you never take the DA's without having some way of assessing your behaviors on a DAILY basis, if you do then there may well be consequences.
I make no apologies for my statements because I, like many others, don't make them as a result of research, I make them from my heart because of my experiences.
Glenchass
Surely we, of all people, should be aware of informed choice. That is precisely the value ( amongst others) of this site/forum.
We must never feel inhibited about expresing what is after all the most informed opinion there exists on PD: it comes from us, sadly not from the ' experts'. We are the experts, let's not forget it.
mrs.t.
We must never feel inhibited about expresing what is after all the most informed opinion there exists on PD: it comes from us, sadly not from the ' experts'. We are the experts, let's not forget it.
mrs.t.
Thanks, Mrs T. 
Hi Ray,
You said you'd been expecting me, and I didn't want to disappoint.
I'm sorry you regard my post as an attack. I don't agree.
The forum is for all to express their opinions, I thought.
I speak for myself , and sometimes , other members will express a similar view.
They are entitled , as we all are, to post freely.
I responded , because I am thinking of the 75%people taking D.A.'s who are in the group which are not troubles by the OCD tendencies.
The trouble is, they don't know , at the time, that they indeed are in this sector.
They could be ever fearful that they may not be, especially as they periodically have to contemplate an increase in their meds.
Hope this further explains my viewpoint.
Note, Ray, politely put, no attack.
All the best
Lorna.
You said you'd been expecting me, and I didn't want to disappoint.
I'm sorry you regard my post as an attack. I don't agree.
The forum is for all to express their opinions, I thought.
I speak for myself , and sometimes , other members will express a similar view.
They are entitled , as we all are, to post freely.
I responded , because I am thinking of the 75%people taking D.A.'s who are in the group which are not troubles by the OCD tendencies.
The trouble is, they don't know , at the time, that they indeed are in this sector.
They could be ever fearful that they may not be, especially as they periodically have to contemplate an increase in their meds.
Hope this further explains my viewpoint.
Note, Ray, politely put, no attack.
All the best
Lorna.
Hi Lorna
The "two-pronged attack" JOKE was a light-hearted response to Titan's "Why the need for such an onslaught?". There clearly had been no onslaught. Nor was there any reason for his intervention.
Changing tack, one amongst us who has been on DAs and suffered very bad OCDs has now been taken off DAs completely for 6 months but is STILL experiencing OCDs. This person's current medication is now only Sinemet and Azilect.
Interesting....
The "two-pronged attack" JOKE was a light-hearted response to Titan's "Why the need for such an onslaught?". There clearly had been no onslaught. Nor was there any reason for his intervention.
Changing tack, one amongst us who has been on DAs and suffered very bad OCDs has now been taken off DAs completely for 6 months but is STILL experiencing OCDs. This person's current medication is now only Sinemet and Azilect.
Interesting....
I am sorry if my post was unclear. I am very stressed and don't always communicate clearly.
My husband came off the DAs completely and hasn't taken any since the end of December. To restore his mobility he was told to increase his Sinemet by shortening the gap between until he was "on" for most of the time.
Over a period of 4 weeks he went from 6 to 9 a day (125per tab). On 9 a day the compulsions started to reappear.
The neurologist said that once the mind is primed to behave in this way, the high dose of Levadopa will often set it off again. As planned, my husband has now to reduce the dose of each med over 2 months by 25% but keep the gap at 2 hours. This is the best way evidently to keep mobility at its peak.
The lowering of the dose will hopefully end the urges.
If he could, he would have liked to add a small dose of clozapine to counteact them but funding probs make this impossible.
If it hadn't been for Ray's continued support and information we would have believed our last neurologist that the DAs played no part in this horror and my husband would have kept on taking them.
Our marriage would have been over and I would probably have committed suicide.
His warnings and continued battle to make accurate information available will hopefully help others as it has helped us.
The urgings of Lorna and Titan to lessen his input will only mean more destruction of people's lives.
Those who are fine on DAs have no need to restrict the activities who offer a lifeline to those of us who need one.
Love to all who are helping us to win the battle against the terrible damage done to us by drug companies and neurologists who hid the truth from us.
X
My husband came off the DAs completely and hasn't taken any since the end of December. To restore his mobility he was told to increase his Sinemet by shortening the gap between until he was "on" for most of the time.
Over a period of 4 weeks he went from 6 to 9 a day (125per tab). On 9 a day the compulsions started to reappear.
The neurologist said that once the mind is primed to behave in this way, the high dose of Levadopa will often set it off again. As planned, my husband has now to reduce the dose of each med over 2 months by 25% but keep the gap at 2 hours. This is the best way evidently to keep mobility at its peak.
The lowering of the dose will hopefully end the urges.
If he could, he would have liked to add a small dose of clozapine to counteact them but funding probs make this impossible.
If it hadn't been for Ray's continued support and information we would have believed our last neurologist that the DAs played no part in this horror and my husband would have kept on taking them.
Our marriage would have been over and I would probably have committed suicide.
His warnings and continued battle to make accurate information available will hopefully help others as it has helped us.
The urgings of Lorna and Titan to lessen his input will only mean more destruction of people's lives.
Those who are fine on DAs have no need to restrict the activities who offer a lifeline to those of us who need one.
Love to all who are helping us to win the battle against the terrible damage done to us by drug companies and neurologists who hid the truth from us.
X
Thanks GG.
My own daily levodopa input, via various products, is as follows:
Stalevo 100 x 7 (1 every 2 hrs 8am-8pm) each contains 100mg L-Dopa = 700mg
Sinemet CR x 2 nightly (11pm & 4am) each tab contains 250mg L-Dopa = 500mg
Madopar Dispersible x 4 (as required), each containing 50mg L-Dopa = 200mg
Total L-Dopa per day: 1400mg
This appears to be more than GG's O/H is currently on.
Luckily I no longer suffer any OCDs, but nearly 11 years after DX my mobility is virtually zero most of the time. There are ON periods, but they're unpredictable and at best total a few hours a day.
Ray.
My own daily levodopa input, via various products, is as follows:
Stalevo 100 x 7 (1 every 2 hrs 8am-8pm) each contains 100mg L-Dopa = 700mg
Sinemet CR x 2 nightly (11pm & 4am) each tab contains 250mg L-Dopa = 500mg
Madopar Dispersible x 4 (as required), each containing 50mg L-Dopa = 200mg
Total L-Dopa per day: 1400mg
This appears to be more than GG's O/H is currently on.
Luckily I no longer suffer any OCDs, but nearly 11 years after DX my mobility is virtually zero most of the time. There are ON periods, but they're unpredictable and at best total a few hours a day.
Ray.
Well said GG, I do hope that you can get you o/h meds sorted as soon as possible. You have both been through the mill and my heart goes out to you. The devastating negative effects of DA's are simply not highlighted enough and as Ray said in his post the media just big it up by making out that people are using the effects of these meds to justify bad behaviors.
We, as the victims of this travesty need to join forces and make ourselves heard, we need to get the message out there, how we we do that is a matter for debate!!
Glenchass
We, as the victims of this travesty need to join forces and make ourselves heard, we need to get the message out there, how we we do that is a matter for debate!!
Glenchass