Hi Ray,
Just got home from work, sorry for the delay.
I asked the question and you've answered it. My Thanks!
I think not, Turnip. Hopefully we've all learnt from experience.
Lizzie.
Madopar is NOT a DA, it is L-Dopa based, I use it myself.
However Ropinirole IS a DA.
You should't take advice from me, I'm not medically qualified, but I would definitely discuss the issue with the PD nurse or Neurologist if I were you.
Then it's your decision. I know what I would do.
Ray.
Madopar is NOT a DA, it is L-Dopa based, I use it myself.
However Ropinirole IS a DA.
You should't take advice from me, I'm not medically qualified, but I would definitely discuss the issue with the PD nurse or Neurologist if I were you.
Then it's your decision. I know what I would do.
Ray.
Ray - want a bet? 
The loser has to write a limerick about the self control/weakness of the forum population.
The loser has to write a limerick about the self control/weakness of the forum population.
Thanks for your thoughts Ray, I will certainly be discussing it further with PD Nurse/Neurologist.
Lizzy
Lizzy
Hi Ray and all,
Well its the same old topic causing the discontent.Have watched,absorbed and pondered deeply.Last thing i knew was we were all in agreement to move forward for the benefit of all.
We all have friends on here,i correspond with Lorna as others do.I know and read her valid question on statistics as simply that.She was alarmed that her specialist and new consultant had quoted a lower figure that consistently quoted on here.She was not nasty,but concerned at the discrepancy.Everything now explained,it is clear on how the two figures differ.
We all have our own personal problems with the condition we are lumbered with.It would be nice if people could be just a little more understanding and realise that sometimes questions asked by a member of the forum in the midst of there own DA ups and downs,is not meant as antagonism,but an attempt to find answers in figure variations.
As for not poking noses in threads that don,t concern.How can someone with parkinsons taking DA,s be intruding in this thread.WE ARE POTENTIAL VICTIMS,if all that is said is correct.So the people you are trying to help are now excluded.
Ray,you say yourself in your poem and other postings how irrational you were,how you were affected in many ways.Lets try and help each other instead of segregation,which doesen,t help anyone.
All the best
Titan
Well its the same old topic causing the discontent.Have watched,absorbed and pondered deeply.Last thing i knew was we were all in agreement to move forward for the benefit of all.
We all have friends on here,i correspond with Lorna as others do.I know and read her valid question on statistics as simply that.She was alarmed that her specialist and new consultant had quoted a lower figure that consistently quoted on here.She was not nasty,but concerned at the discrepancy.Everything now explained,it is clear on how the two figures differ.
We all have our own personal problems with the condition we are lumbered with.It would be nice if people could be just a little more understanding and realise that sometimes questions asked by a member of the forum in the midst of there own DA ups and downs,is not meant as antagonism,but an attempt to find answers in figure variations.
As for not poking noses in threads that don,t concern.How can someone with parkinsons taking DA,s be intruding in this thread.WE ARE POTENTIAL VICTIMS,if all that is said is correct.So the people you are trying to help are now excluded.
Ray,you say yourself in your poem and other postings how irrational you were,how you were affected in many ways.Lets try and help each other instead of segregation,which doesen,t help anyone.
All the best
Titan
Hi Titan.
I too was under the impression that the current topic status was "we were all in agreement to move forward for the benefit of all", so I was surprised to read, in your very first sentence, that it "was already causing discontent". That's the first I've heard of it, I thought the resurrection had been quite cordial.
I concur that there was nothing wrong with Lorna's first post here. Perhaps she laboured the discrepancy a little, but that was no big deal, and soon forgotten. After all, no-one was surprised that a semi-retired professor hadn't yet received the latest figures, published less than three weeks ago. Of course the pedantic might suggest that a 30-second search on this forum would have found the new figure on here only 10 days ago, complete with a link to the Mayo summary, and saved some effort. Indeed such a search done last week could have produced a printed copy to take to the good professor on Monday.
I agree Lorna was not nasty, and her subsequent reply was perfectly civil. Her comments about "I don't want to fall out with you", "there is this difference of opinion", "this big discrepancy" and "the stumbling block between us" were the understandable result of keenness to have reliable data to hand. However in reality this non-problem was a simple case of me quoting a new statistic published earlier this month, which had not yet reached the professor. Unfortunately Lorna also missed it on this Forum.
Heigh-ho, hardly anything to worry about. A couple of forum posts and the issue was happily closed, [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]
I too was under the impression that the current topic status was "we were all in agreement to move forward for the benefit of all", so I was surprised to read, in your very first sentence, that it "was already causing discontent". That's the first I've heard of it, I thought the resurrection had been quite cordial.
I concur that there was nothing wrong with Lorna's first post here. Perhaps she laboured the discrepancy a little, but that was no big deal, and soon forgotten. After all, no-one was surprised that a semi-retired professor hadn't yet received the latest figures, published less than three weeks ago. Of course the pedantic might suggest that a 30-second search on this forum would have found the new figure on here only 10 days ago, complete with a link to the Mayo summary, and saved some effort. Indeed such a search done last week could have produced a printed copy to take to the good professor on Monday.
I agree Lorna was not nasty, and her subsequent reply was perfectly civil. Her comments about "I don't want to fall out with you", "there is this difference of opinion", "this big discrepancy" and "the stumbling block between us" were the understandable result of keenness to have reliable data to hand. However in reality this non-problem was a simple case of me quoting a new statistic published earlier this month, which had not yet reached the professor. Unfortunately Lorna also missed it on this Forum.
Heigh-ho, hardly anything to worry about. A couple of forum posts and the issue was happily closed, [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]
Quote "As for not poking noses in threads that don,t concern.How can someone with parkinsons taking DA,s be intruding in this thread.WE ARE POTENTIAL VICTIMS,if all that is said is correct.So the people you are trying to help are now excluded. "
But's that what they want TITAN!
For the record i'll not be bullied by anyone, nor made to feel guilty or uncomfortable in posting my views.
One of those views is that the anti D/A Brigade could deter a newly diagnosed PWP from taking DA's or/and causing unneccassary anxiety during the decision process, and these are a group of drugs that could improve their quality of life, and thats FACT !
Have a nice weekend which ever side of the fence you sit on
But's that what they want TITAN!
For the record i'll not be bullied by anyone, nor made to feel guilty or uncomfortable in posting my views.
One of those views is that the anti D/A Brigade could deter a newly diagnosed PWP from taking DA's or/and causing unneccassary anxiety during the decision process, and these are a group of drugs that could improve their quality of life, and thats FACT !
Have a nice weekend which ever side of the fence you sit on
Hi Ray,
I will continue to support anybody i wish.No gallantry involved whatsoever.I read between the lines Ray and post in areas that affect me personally,tug at my heartstrings or simply have a view i wish to air.I will air my views when and where i desire.
[ 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 ]
Well done for producing a response,my answering poem i have set to one side.If aired you may realise that some people have known nothing else but a life in slum land,have never been in a privileged position to own a big house by the sea.Sick children,many whose parents desperately raise money for one last dream holiday for them.They have never had a life.Whist you have seen the world and committing illegal acts.You recount your fast cars,helicopters,mixing with celebrities etc,in somewhat bragging tones.As you do so,a husband holds his Wifes hand as her life ebbs away.Powerful,deep,upsetting,earth shattering,devastating moments occur as we speak.They are the things that move me.The blend of the heady life so glamorised and the extremes you went to do not come across to well to me.
Come back with a smug answer,your case is excessive and many may be either incredulous that you went to such extremes,frown at the way your personality comes across,or have more serious heartache to worry about.
Have a nice day,
Titan
I will continue to support anybody i wish.No gallantry involved whatsoever.I read between the lines Ray and post in areas that affect me personally,tug at my heartstrings or simply have a view i wish to air.I will air my views when and where i desire.
[ 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 ]
Well done for producing a response,my answering poem i have set to one side.If aired you may realise that some people have known nothing else but a life in slum land,have never been in a privileged position to own a big house by the sea.Sick children,many whose parents desperately raise money for one last dream holiday for them.They have never had a life.Whist you have seen the world and committing illegal acts.You recount your fast cars,helicopters,mixing with celebrities etc,in somewhat bragging tones.As you do so,a husband holds his Wifes hand as her life ebbs away.Powerful,deep,upsetting,earth shattering,devastating moments occur as we speak.They are the things that move me.The blend of the heady life so glamorised and the extremes you went to do not come across to well to me.
Come back with a smug answer,your case is excessive and many may be either incredulous that you went to such extremes,frown at the way your personality comes across,or have more serious heartache to worry about.
Have a nice day,
Titan
Before this thread degenerates into bickering and personal attacks again, let us all step back and take an objective view.
For some, DAs are a godsend and they are happy to take them for their improved 'quality of life'.
For others, the side effects have drastically reduced their 'quality of life'.
Let us all accept that there are pros and cons, and it is a flip of the coin(ie your personal genetics)as to your own reaction to them.
This forum is a gathering place for people to pass on information to others, so if nothing else there is [u]an awareness of the facts.[/u]
I despair at the fact that the newly diagnosed are not informed of existing possible alternatives such as the Cogane trial(currently recruiting) that if successful may well hold benefits for us all. Instead we expend our attentions on the existing drug regimes, that offer no possiblity of cure, merely papering over the cracks.
This forum exists to SUPPORT, HELP and INFORM, not to conduct personal feuds.
Peter
For some, DAs are a godsend and they are happy to take them for their improved 'quality of life'.
For others, the side effects have drastically reduced their 'quality of life'.
Let us all accept that there are pros and cons, and it is a flip of the coin(ie your personal genetics)as to your own reaction to them.
This forum is a gathering place for people to pass on information to others, so if nothing else there is [u]an awareness of the facts.[/u]
I despair at the fact that the newly diagnosed are not informed of existing possible alternatives such as the Cogane trial(currently recruiting) that if successful may well hold benefits for us all. Instead we expend our attentions on the existing drug regimes, that offer no possiblity of cure, merely papering over the cracks.
This forum exists to SUPPORT, HELP and INFORM, not to conduct personal feuds.
Peter
posted it twice 
Thank you Krugen for posting this.
I have found so much support from everyone on this forum and have been very grateful for it.
New people joining this forum are looking for advice and support when they are still reeling from the shock of diagnosis. Do they really need to fall straight into an argument?.
Everyone is entitled to an opinion but sometimes we have to agree to disagree.
We all need to know the risks of DA's but they have been wonderful for me!. I am no longer in pain and my tremor is almost unnoticeable. I will be looking out for signs of worrying behaviour (as will OH)so than you all for your opinions.
Caroline
I have found so much support from everyone on this forum and have been very grateful for it.
New people joining this forum are looking for advice and support when they are still reeling from the shock of diagnosis. Do they really need to fall straight into an argument?.
Everyone is entitled to an opinion but sometimes we have to agree to disagree.
We all need to know the risks of DA's but they have been wonderful for me!. I am no longer in pain and my tremor is almost unnoticeable. I will be looking out for signs of worrying behaviour (as will OH)so than you all for your opinions.
Caroline
Krugen: I agree.
Titan:
[ 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 ]
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.
Have a good weekend,
Ray.
Titan:
[ 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 ]
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.
Have a good weekend,
Ray.
Oh well, at least my fingers are getting plenty of exercise on this keyboard!
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
Hi Ray
I think you are right to open a new dedicated thread on this subject under the treatments section. I noticed since the last thread disappeared into the archives of this forum, postings mainly from newbies on the subject have been popping up in other parts of the forum.
Ray some of your stories about your own experiences hold no punches and make for uncomfortable reading. However they do expose the dark side of what can happen with this medication, if things go wrong. I like many others have been a forum member for a number of years, so can honestly say i know your story backwards. However that is not a request for you to stop, far from it. Over the last couple of years i have lost count of the number of newbies who expressed their gratitude for you bringing the problem to their attention. Without you keeping it in the spotlight, i feel sure many would of just prolonged their suffering.
Maybe the day both Ray and his "warning band wagon" can finally retire, is when ALL neurologists and drug companies raise their game.
I think you are right to open a new dedicated thread on this subject under the treatments section. I noticed since the last thread disappeared into the archives of this forum, postings mainly from newbies on the subject have been popping up in other parts of the forum.
Ray some of your stories about your own experiences hold no punches and make for uncomfortable reading. However they do expose the dark side of what can happen with this medication, if things go wrong. I like many others have been a forum member for a number of years, so can honestly say i know your story backwards. However that is not a request for you to stop, far from it. Over the last couple of years i have lost count of the number of newbies who expressed their gratitude for you bringing the problem to their attention. Without you keeping it in the spotlight, i feel sure many would of just prolonged their suffering.
Maybe the day both Ray and his "warning band wagon" can finally retire, is when ALL neurologists and drug companies raise their game.
What is it with certain people wanting to try and cause so much trouble! It seems to me that these are the people who have not been involved in any compulsive problems, hence the negative reaction to the helpfull warnings.
I have just been reading an old thread called "Catastropic Compulsive Behaviour" on this forum. It is very relevant to the theme of this thread, and has some chilling tales of poor victims of compulsive behaviour, caused by Dopamine Agonists. I would advise newcomers to read it. Take care (much care). Carole
Those of us who have been affected in a negative way by DA's are not trying to scare people but to help them be aware of the negative side of the drugs. I do not want others to go through what my family have had to endure, therefore I will continue to advise caution and ask newly dx pwp to closely monitor their behaviors whilst taking DA's. When the are suitable for a pwp they are brilliant, but the dark side creeps on soooooo slowly and insipidly that one must always be cautious.
Hi.
The thread Carole talks of can be located most easily by going into "Search" and simply entering the word "desperate" into the "Posted by Member name" box at the bottom. Then hit "Search".
If you trawl around there are quite a few threads on this topic in various sections, with assorted headings. Sometimes US spellings are used, e.g. "Behavior".
The purpose of THIS thread was to try to keep everything in one place.
Oh, and congratulations to blueeyes for predicting that the "at risk" figure would rise to 1 in 4, eight months before that exact figure was officially announced!
Ray.
The thread Carole talks of can be located most easily by going into "Search" and simply entering the word "desperate" into the "Posted by Member name" box at the bottom. Then hit "Search".
If you trawl around there are quite a few threads on this topic in various sections, with assorted headings. Sometimes US spellings are used, e.g. "Behavior".
The purpose of THIS thread was to try to keep everything in one place.
Oh, and congratulations to blueeyes for predicting that the "at risk" figure would rise to 1 in 4, eight months before that exact figure was officially announced!
Ray.