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Any donations welcome.
Make cheques out to Church of Aloysius Seraphim Hosanna - or just CASH.
Good books available as soon as I have made it up.
Make cheques out to Church of Aloysius Seraphim Hosanna - or just CASH.
Good books available as soon as I have made it up.
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Yes Ray ive been ahead of what the "Research" has been saying for the last 5 years.
For the record, here is another chilling prediction for anyone who is interested. The 1 in 4 figure will soon become 1 in 2 for PwP aged under 50 and taking DA's. Even my own Neurologist now accepts around half of his patients aged under 50, have experienced significant OCD side effects from DA's. He openly tells me some of his collogues still have got their heads in the sand on this issue.
Its a complete waste money carrying out more research into "better understanding" the link between OCD and DA's. If anyone wants to better understand the link, then look at the link between taking cocaine and OCD behaviour? Dopamine Agonists stimulate the same brain receptors as cocaine! Its not more research we need, its ACTION to get some accountability in place to protect us from those doctors and drug companies who fail to correctly warn us.
For the record, here is another chilling prediction for anyone who is interested. The 1 in 4 figure will soon become 1 in 2 for PwP aged under 50 and taking DA's. Even my own Neurologist now accepts around half of his patients aged under 50, have experienced significant OCD side effects from DA's. He openly tells me some of his collogues still have got their heads in the sand on this issue.
Its a complete waste money carrying out more research into "better understanding" the link between OCD and DA's. If anyone wants to better understand the link, then look at the link between taking cocaine and OCD behaviour? Dopamine Agonists stimulate the same brain receptors as cocaine! Its not more research we need, its ACTION to get some accountability in place to protect us from those doctors and drug companies who fail to correctly warn us.
They probably thought
"good point, well made" and then trotted off to google to see if they can qualify for council tax relief on their new found religion."
If they are anything like me when I was first diagnosed (wish I knew the short way of saying that) dxgnsd - something like that - anyhoo, they will be trying to get on with it and hoping something turns up, like a cure.
In the meantime the drugs are good at managing it, have an issue with one kind. But their on the case.
Research done, pub.
A fellow pwp or carer who's looking for answers as to why the 180 degree personality changes will be grateful there is a reason behind it and an answer.
Actually falling on my coccyx is by far and away the worst thing that I have encountered in my 9+ years dxgnsd with pd. I don't mean to frighten anyone, but it's not just people with pd who fall on their coccyx it can strike people at all ages with absolutely nothing wrong with them.
Anyway in my church, as head, i have Ecky Infallibility. So to say critize any of wot i just said amounts to heresy.
"good point, well made" and then trotted off to google to see if they can qualify for council tax relief on their new found religion."
If they are anything like me when I was first diagnosed (wish I knew the short way of saying that) dxgnsd - something like that - anyhoo, they will be trying to get on with it and hoping something turns up, like a cure.
In the meantime the drugs are good at managing it, have an issue with one kind. But their on the case.
Research done, pub.
A fellow pwp or carer who's looking for answers as to why the 180 degree personality changes will be grateful there is a reason behind it and an answer.
Actually falling on my coccyx is by far and away the worst thing that I have encountered in my 9+ years dxgnsd with pd. I don't mean to frighten anyone, but it's not just people with pd who fall on their coccyx it can strike people at all ages with absolutely nothing wrong with them.
Anyway in my church, as head, i have Ecky Infallibility. So to say critize any of wot i just said amounts to heresy.
Hi,
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Surveys are surveys,you can do a thousand and get a different result every time.Statistics are numbers on paper which can be misleading.How many people have OCD traits and habits without DA,s,i personally know many.As part of a survey this would be included in the statistics,something which is already inherent in a large percentage of the population not on medication.
This fixation with figures is scare mongering.Stamp collectors,car boot sale fanatics,women with massive shoe collections,anything that involves collecting which may be classed as obsessional/beyond the norm.It is already out there.Don,t blame all obsessional traits on the DA,s.There again some people have motives don,t they,manipulating the whole DA debate to their own ends.
Well i can see it,it stands out like a sore thumb
All the best
Titan,Tincan,slum land man.
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Surveys are surveys,you can do a thousand and get a different result every time.Statistics are numbers on paper which can be misleading.How many people have OCD traits and habits without DA,s,i personally know many.As part of a survey this would be included in the statistics,something which is already inherent in a large percentage of the population not on medication.
This fixation with figures is scare mongering.Stamp collectors,car boot sale fanatics,women with massive shoe collections,anything that involves collecting which may be classed as obsessional/beyond the norm.It is already out there.Don,t blame all obsessional traits on the DA,s.There again some people have motives don,t they,manipulating the whole DA debate to their own ends.
Well i can see it,it stands out like a sore thumb
All the best
Titan,Tincan,slum land man.
I can't understand why the PUK Administrator don't set up a topic on this and put a sticky on it so it remains in the forum eye ~ surly this would solve this problem of constantly resurrecting the topic and old posts being constantly repeated????
I also think more awareness needs to be raised when pwp are first introduced to medication and the different drug options are discussed. The times I have read through the forum and newbies are not aware what type of drug they are using. Neurologists/PD nurses should make this their first port of call when prescribing drugs. The patient is often too overwhelmed by the diagnoses to ask such questions and place complete faith in their support team!!
The DA's don't need banning, they just need to be understood and monitored.After all if taking a DA could cause you to grow an extra nose or a nipple on the end of your nose, you'd want to know wouldn't you ~ how awful would that be? Sorry I'm being flippant but...
What about a DVD explaining the different drug options available and possible side effects. When a load of info is thrown at you to read often it is not read and gets shoved in the drawer or recycle bin! Would people be more likely to watch a DVD?
Just some of my thoughts, one's I have had repeatedly over the past few years. Nothing changes. It's the same record over and over again and unfortunately people will not stop being diagnosed with PD ~ they need to know about side effects, it is extremely important!!
I also think more awareness needs to be raised when pwp are first introduced to medication and the different drug options are discussed. The times I have read through the forum and newbies are not aware what type of drug they are using. Neurologists/PD nurses should make this their first port of call when prescribing drugs. The patient is often too overwhelmed by the diagnoses to ask such questions and place complete faith in their support team!!
The DA's don't need banning, they just need to be understood and monitored.After all if taking a DA could cause you to grow an extra nose or a nipple on the end of your nose, you'd want to know wouldn't you ~ how awful would that be? Sorry I'm being flippant but...
What about a DVD explaining the different drug options available and possible side effects. When a load of info is thrown at you to read often it is not read and gets shoved in the drawer or recycle bin! Would people be more likely to watch a DVD?
Just some of my thoughts, one's I have had repeatedly over the past few years. Nothing changes. It's the same record over and over again and unfortunately people will not stop being diagnosed with PD ~ they need to know about side effects, it is extremely important!!
[Content Removed]
For those who do NOT fall foul of their side effects - particularly OCDs - DAs are incredibly good at dealing with the symptoms of PD, and play (and should continue to play) an important role in improving the lives of thousands of PD sufferers.
When you say "With it becoming increasingly obvious that the general push of this whole debate is towards banning DAs", to whom is it becoming obvious? Not me. As stated above I am strongly in favour of them remaining for as long as patients want them.
I see my own mission as being one of (a) ensuring that EVERY newcomer about to be offered DAs is made FULLY aware of ALL the possible side effects, and shown all the latest statistics, and (b) helping those currently or previously negatively affected by DA-induced OCDs. Some of these will at the present time be unaware that their behaviour is being seriously affected by the DAs; others will be in denial, or in so deep that they know what's happening but either (i) have had all willpower destroyed by the DA, and CANNOT get out, or (ii) just don't care, because the drug has convinced them that they're enjoying themselves.
Despite your assertions, I have no personal interest in the compensation issue. I have no funds to go to law, and have probably passed statutory time limits anyway. Apart from that I could never go through all that courtroom stuff again, it would probably kill me this time!
As for the 1 in 4 figure, blueeyes47's original prediction was based on those in hiding or in denial being tracked down, and their numbers being incorporated into the stats. In reality the authorities have revised the old 1 in 7 figure to 1 in 4 ANYWAY, without taking the missing "blueeyes47 groups" into account at all.
So following this through to a logical conclusion, it's probably 1 in 3. From now on I will probably quote "at least 1 in 4"
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Take care.
Ray.
For those who do NOT fall foul of their side effects - particularly OCDs - DAs are incredibly good at dealing with the symptoms of PD, and play (and should continue to play) an important role in improving the lives of thousands of PD sufferers.
When you say "With it becoming increasingly obvious that the general push of this whole debate is towards banning DAs", to whom is it becoming obvious? Not me. As stated above I am strongly in favour of them remaining for as long as patients want them.
I see my own mission as being one of (a) ensuring that EVERY newcomer about to be offered DAs is made FULLY aware of ALL the possible side effects, and shown all the latest statistics, and (b) helping those currently or previously negatively affected by DA-induced OCDs. Some of these will at the present time be unaware that their behaviour is being seriously affected by the DAs; others will be in denial, or in so deep that they know what's happening but either (i) have had all willpower destroyed by the DA, and CANNOT get out, or (ii) just don't care, because the drug has convinced them that they're enjoying themselves.
Despite your assertions, I have no personal interest in the compensation issue. I have no funds to go to law, and have probably passed statutory time limits anyway. Apart from that I could never go through all that courtroom stuff again, it would probably kill me this time!
As for the 1 in 4 figure, blueeyes47's original prediction was based on those in hiding or in denial being tracked down, and their numbers being incorporated into the stats. In reality the authorities have revised the old 1 in 7 figure to 1 in 4 ANYWAY, without taking the missing "blueeyes47 groups" into account at all.
So following this through to a logical conclusion, it's probably 1 in 3. From now on I will probably quote "at least 1 in 4"
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
Take care.
Ray.
Quote by Titan "How many people have OCD traits and habits without DA,s,i personally know many.As part of a survey this would be included in the statistics,something which is already inherent in a large percentage of the population not on medication. "
When one really thinks about that one fact alone, one begins to seriously wonder how much is blamed on medication and a persons real state of mind before taking meds is ignored.
Good post Cutiepie, often wondered why the powers that be dont just do a sticky and have done with it. Then anything else posted is moved into the relevant sticky or deleted.
But that would be too easy and less troublesome..........
Hmmmmm.......less troublesome ?
When one really thinks about that one fact alone, one begins to seriously wonder how much is blamed on medication and a persons real state of mind before taking meds is ignored.
Good post Cutiepie, often wondered why the powers that be dont just do a sticky and have done with it. Then anything else posted is moved into the relevant sticky or deleted.
But that would be too easy and less troublesome..........
Hmmmmm.......less troublesome ?
titan,
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I am not going to bother responding to all the points you raised in your post other than to say, please direct your anger at the health professionals who produced the statistics/figures and not me!
Thank you
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I am not going to bother responding to all the points you raised in your post other than to say, please direct your anger at the health professionals who produced the statistics/figures and not me!
Thank you
(This is a re-post of one I sent at 14:16 today, from which the moderator had removed a few badly-chosen lines at top and bottom. In this version I have reinstated those lines, but have chosen my words more carefully.)
-----------------------------------------------------
Hi Titan.
Your statement that you are "preserving the right to have our say, as people currently on DAs and doing well", suggests that at some time you’ve been prevented from putting your case. Untrue. You probably represent the majority of DA takers - those who AREN’T affected by OCDs - and you have never been prevented from posting whatever you like - indeed you've been encouraged to do so.
I've stated many times that I do NOT want DAs banned. For those who do NOT fall foul of their side effects - particularly OCDs - DAs are incredibly good at dealing with the symptoms of PD, and play (and should continue to play) an important role in improving the lives of thousands of PD sufferers.
When you say "With it becoming increasingly obvious that the general push of this whole debate is towards banning DAs", to whom is it becoming obvious? Not me. As stated above I am strongly in favour of them remaining for as long as patients want them.
I see my own mission as being one of (a) ensuring that EVERY newcomer about to be offered DAs is made FULLY aware of ALL the possible side effects, and shown all the latest statistics, and (b) helping those currently or previously negatively affected by DA-induced OCDs. Some of these will at the present time be unaware that their behaviour is being seriously affected by the DAs; others will be in denial, or in so deep that they know what's happening but either (i) have had all willpower destroyed by the DA, and CANNOT get out, or (ii) just don't care, because the drug has convinced them that they're enjoying themselves.
Despite your assertions, I have no personal interest in the compensation issue. I have no funds to go to law, and have probably passed statutory time limits anyway. Apart from that I could never go through all that courtroom stuff again, it would probably kill me this time.
As for the 1 in 4 figure, blueeyes47's original prediction was based on those in hiding or in denial being tracked down, and their numbers being incorporated into the stats. In reality the authorities have revised the old 1 in 7 figure to 1 in 4 ANYWAY, without taking the missing "blueeyes47 groups" into account at all.
So following this through to a logical conclusion, it's probably 1 in 3. From now on I will probably quote "at least 1 in 4"
Your analysis of me and those who agree with me is pointless, and your decision to ignore any stats which don't go your way is just evidence manipulation. Lastly your insistence on continuing to promote simplistic theories which have been shot down time and again by the real experts baffles me.
Enjoy the rest of the day
Take care.
Ray.
-----------------------------------------------------
Hi Titan.
Your statement that you are "preserving the right to have our say, as people currently on DAs and doing well", suggests that at some time you’ve been prevented from putting your case. Untrue. You probably represent the majority of DA takers - those who AREN’T affected by OCDs - and you have never been prevented from posting whatever you like - indeed you've been encouraged to do so.
I've stated many times that I do NOT want DAs banned. For those who do NOT fall foul of their side effects - particularly OCDs - DAs are incredibly good at dealing with the symptoms of PD, and play (and should continue to play) an important role in improving the lives of thousands of PD sufferers.
When you say "With it becoming increasingly obvious that the general push of this whole debate is towards banning DAs", to whom is it becoming obvious? Not me. As stated above I am strongly in favour of them remaining for as long as patients want them.
I see my own mission as being one of (a) ensuring that EVERY newcomer about to be offered DAs is made FULLY aware of ALL the possible side effects, and shown all the latest statistics, and (b) helping those currently or previously negatively affected by DA-induced OCDs. Some of these will at the present time be unaware that their behaviour is being seriously affected by the DAs; others will be in denial, or in so deep that they know what's happening but either (i) have had all willpower destroyed by the DA, and CANNOT get out, or (ii) just don't care, because the drug has convinced them that they're enjoying themselves.
Despite your assertions, I have no personal interest in the compensation issue. I have no funds to go to law, and have probably passed statutory time limits anyway. Apart from that I could never go through all that courtroom stuff again, it would probably kill me this time.
As for the 1 in 4 figure, blueeyes47's original prediction was based on those in hiding or in denial being tracked down, and their numbers being incorporated into the stats. In reality the authorities have revised the old 1 in 7 figure to 1 in 4 ANYWAY, without taking the missing "blueeyes47 groups" into account at all.
So following this through to a logical conclusion, it's probably 1 in 3. From now on I will probably quote "at least 1 in 4"
Your analysis of me and those who agree with me is pointless, and your decision to ignore any stats which don't go your way is just evidence manipulation. Lastly your insistence on continuing to promote simplistic theories which have been shot down time and again by the real experts baffles me.
Enjoy the rest of the day
Take care.
Ray.
Titan.
In a post here yesterday at 09:17 you chose to imply that I had been having a good time whilst not caring that others continued to suffer:
"You recount your fast cars, helicopters, mixing with celebrities etc, in somewhat bragging tones. As you do so, a husband holds his wife's hand as her life ebbs away." Etc, etc.
Firstly I was NOT having a good time. I realise that it may have APPEARED that I was, but I have attempted many times to convey the mental turmoil which is actually going on in one's head at such times: it is VERY unpleasant. I also mention it briefly in my poem, also on this thread. However, as you have no experience of serious DA/OCDs it is unlikely that you will be able to grasp the magnitude of this insanity.
Secondly you should tread very carefully when throwing deliberately emotional phrases - purely for dramatic effect - into the the ring, because you know nothing about the private lives of other participants, and you could easily cause untold upset.
In my response to you at 13:38 yesterday, I included this:
"For your information my current wife (the first did a runner at the first sign of OCDs, remember?) suffers from osteo-arthritis, rheumatoid arthritis, Wegener's Granulomatosis and Churg-Strauss Syndrome. She is having various joints replaced (very carefully, given her problem with rejection), and several internal organs are in a pretty sorry state. She cannot get out of bed or down the stairs without help, and must self-inject her medication daily. Her condition is far worse than my own, and she is being seen by FIVE consultants from different specialties.
So don't talk to ME about others' problems; I am very well experienced in holding my wife's hand, thank you."
After quite a long wait you posted your response, but chose to come out fighting on all the DA/OCD stuff, and yet completely ignored your faux pas over the issue of my wife. After a day and a half of waiting, I would be very grateful for an apology, please.
Thank you.
Take care,
Ray.
In a post here yesterday at 09:17 you chose to imply that I had been having a good time whilst not caring that others continued to suffer:
"You recount your fast cars, helicopters, mixing with celebrities etc, in somewhat bragging tones. As you do so, a husband holds his wife's hand as her life ebbs away." Etc, etc.
Firstly I was NOT having a good time. I realise that it may have APPEARED that I was, but I have attempted many times to convey the mental turmoil which is actually going on in one's head at such times: it is VERY unpleasant. I also mention it briefly in my poem, also on this thread. However, as you have no experience of serious DA/OCDs it is unlikely that you will be able to grasp the magnitude of this insanity.
Secondly you should tread very carefully when throwing deliberately emotional phrases - purely for dramatic effect - into the the ring, because you know nothing about the private lives of other participants, and you could easily cause untold upset.
In my response to you at 13:38 yesterday, I included this:
"For your information my current wife (the first did a runner at the first sign of OCDs, remember?) suffers from osteo-arthritis, rheumatoid arthritis, Wegener's Granulomatosis and Churg-Strauss Syndrome. She is having various joints replaced (very carefully, given her problem with rejection), and several internal organs are in a pretty sorry state. She cannot get out of bed or down the stairs without help, and must self-inject her medication daily. Her condition is far worse than my own, and she is being seen by FIVE consultants from different specialties.
So don't talk to ME about others' problems; I am very well experienced in holding my wife's hand, thank you."
After quite a long wait you posted your response, but chose to come out fighting on all the DA/OCD stuff, and yet completely ignored your faux pas over the issue of my wife. After a day and a half of waiting, I would be very grateful for an apology, please.
Thank you.
Take care,
Ray.
Please can I just say that when I was told that I had Parkinsons Disease 4 years ago I knew nothing about IT, only that Micheal J Fox had IT. As for the meds I once again knew nothing...Put on Requip XL by my Consultant completely trusted him as he was the expert in this matter.( My view.)
I joined the forum and thanx to all you good people I have learned more about PD and have been made aware of the side effects of these drugs we take. Can I say that I am now aware of the OCDS. I have decided not to increase my dosage of meds at the last appointment with my consultant. My decision.
I am not been brainwashed just been made made aware Thank you
I joined the forum and thanx to all you good people I have learned more about PD and have been made aware of the side effects of these drugs we take. Can I say that I am now aware of the OCDS. I have decided not to increase my dosage of meds at the last appointment with my consultant. My decision.
I am not been brainwashed just been made made aware Thank you
Gagged again.
I basically said...
Oh what'a the point.
The point is, making a point is pointless. A complete waste of time and effort.
Why not put a sticky at the begining stating who is allowed to post on given thread.
I would like to insert a link at this point to youtube, but it will e deleted.
It's a tune thats going through my head in a reggie perrin-esque way
look up tune yourself, it's called "Entry of the Gladiators".
I basically said...
Oh what'a the point.
The point is, making a point is pointless. A complete waste of time and effort.
Why not put a sticky at the begining stating who is allowed to post on given thread.
I would like to insert a link at this point to youtube, but it will e deleted.
It's a tune thats going through my head in a reggie perrin-esque way
look up tune yourself, it's called "Entry of the Gladiators".
gladiators? thats my analogy! ask titan and ray!
anyway, its good to see, as Ray expected, that everyone has learnt from previous experience.
it brings a tear to the eye and renews one's faith in humanity.
anyway, its good to see, as Ray expected, that everyone has learnt from previous experience.
it brings a tear to the eye and renews one's faith in humanity.
I'm going t go lie down and practice my anger management.
#I feel pretty,
Oh, so pretty,
I feel pretty and witty and bright!
And I pity
Any girl who isn't with me tonight.#
Well my self esteem deal with.
I have said a prayer to my Godhead and was told come the revolution, the book burners will be first against the wall, well it will be when I type it up.
Good luck getting any info if you are worried about effects parkinson's seems to be having on you or a loved ones personality. If your lucky you'll find someone who knows what you and your partner are going through and who will give you top advice on what is happening . If your unlucky you'll come across someone who will think you are predisposed to being a nutter, you will be mocked at every turn. THAT is scary.
So you'll find me in the forum talking absolute drivel. That doesn't tend to get deleted.
#I feel pretty,
Oh, so pretty,
I feel pretty and witty and bright!
And I pity
Any girl who isn't with me tonight.#
Well my self esteem deal with.
I have said a prayer to my Godhead and was told come the revolution, the book burners will be first against the wall, well it will be when I type it up.
Good luck getting any info if you are worried about effects parkinson's seems to be having on you or a loved ones personality. If your lucky you'll find someone who knows what you and your partner are going through and who will give you top advice on what is happening . If your unlucky you'll come across someone who will think you are predisposed to being a nutter, you will be mocked at every turn. THAT is scary.
So you'll find me in the forum talking absolute drivel. That doesn't tend to get deleted.
Meanwhile, back on-thread, we were discussing DAs and catastrophic OCDs.....
No apology yet received for the distasteful remark about holding wives' hands, despite records showing that the originator has been logged in AFTER the request, and MUST have seen it. A private message will suffice. Thank you.
DA's and Catastophic OCD effects.
They can't be seen can they? The saying "There's none so blind as those who cannot see", seems to me to be hugely significant here.
The cruellest thing to be inflicted upon a sufferer of any illness is the DISBELIEF and bigotry of others.
They can't be seen can they? The saying "There's none so blind as those who cannot see", seems to me to be hugely significant here.
The cruellest thing to be inflicted upon a sufferer of any illness is the DISBELIEF and bigotry of others.
Hi Ray,
Your infatuation with me is flattering,at the same time disturbing.Apology for what,you don,t know who i was personally referring too.Have you read any of my recent personal posts.My Father will be here shortly,maybe you would like to chat to him about it.To switch something that i have said to make it a personal insult to your Wife is ridiculous.
There is your answer Ray,
All the best
Titan
Your infatuation with me is flattering,at the same time disturbing.Apology for what,you don,t know who i was personally referring too.Have you read any of my recent personal posts.My Father will be here shortly,maybe you would like to chat to him about it.To switch something that i have said to make it a personal insult to your Wife is ridiculous.
There is your answer Ray,
All the best
Titan