.
Hi again.
So to summarise the risk of suffering from OCDs if you are taking DAs:
Normal PD patients: 1 in 4.
Those on high dosages: 1 in 3.
Those under 50: 1 in 2.
Patients who don't appear to suffer from OCDs nevertheless run an increasing risk every time their DA dosage is increased. It seems likely that everyone has his/her own threshold beyond which they will succumb to OCDs, but these vary greatly from person to person.
Furthermore there is an unknown number of DA/OCD sufferers out there "in hiding", as it were. If this number could be quantified the above risk figures would need to be revised further downwards.
Ray.
.
......so at worst case scenario 50% of PWP taking DA's stand a good chance of a better quality of life WITHOUT side affects.....
.
Hi.
There are an estimated 120,000 PD sufferers in the UK.
If we guess at 30% (?) of these being on DAs (= 36,000), and then apply to this number the latest 1 in 4 figure for OCD sufferers, we get 9,000 DA/OCD cases in the UK alone.
That's one helluva lot of compulsions......
Ray.
.
Hi.
There are an estimated 120,000 PD sufferers in the UK.
If we guess at 30% (?) of these being on DAs (= 36,000), and then apply to this number the latest 1 in 4 figure for OCD sufferers, we get 9,000 DA/OCD cases in the UK alone.
That's one helluva lot of compulsions......
Ray.
.
hi Kyloe,
I don't understand the logic of what your implying? Are you implying the fact 50% benefit from DA's without any serious side effects, that this makes it acceptable the other 50% potentially run the risk of major life changing side effects?
If so that strikes me as being a very inward looking view of this issue!
Regards
bluey
I don't understand the logic of what your implying? Are you implying the fact 50% benefit from DA's without any serious side effects, that this makes it acceptable the other 50% potentially run the risk of major life changing side effects?
If so that strikes me as being a very inward looking view of this issue!
Regards
bluey
Post Deleted
Current UK population is 59 Million, taking into account those people who DONT have Parkinsons and dont take medication but DO have some form of compulsive behaviour , its estimated that at least 50% of the population fall into this bracket.
Thats 30 Million !!! Give or take one or two .......
Thats 30 Million !!! Give or take one or two .......
hi Leyther,
I totally agree with you, we don't need to spend more money on research projects just to tell us what we already know? What we now need is for organisations like PUK to start spending money on tackling this issue. Its goes without saying of course, burying one's head in the sand researching what we already know, is a lot less hassle than confronting issues and changing the way drug companies and some neurologists currently operate?
all the best
bluey
I totally agree with you, we don't need to spend more money on research projects just to tell us what we already know? What we now need is for organisations like PUK to start spending money on tackling this issue. Its goes without saying of course, burying one's head in the sand researching what we already know, is a lot less hassle than confronting issues and changing the way drug companies and some neurologists currently operate?
all the best
bluey
Hello Bluey
Going by whats been posted by another member .....
Quote "
Normal PD patients: 1 in 4.
Those on high dosages: 1 in 3.
Those under 50: 1 in 2. "
I used the worst case scenario,if you use the 1 in 4 the figure would obviously be 75% would benefit from taking DA's without side affects.
What right do we have in detering 75% of PWP TO TAKE A MEDICATION THAT COULD IMPROVE THEIR QUALITY OF LIFE ?
Going by whats been posted by another member .....
Quote "
Normal PD patients: 1 in 4.
Those on high dosages: 1 in 3.
Those under 50: 1 in 2. "
I used the worst case scenario,if you use the 1 in 4 the figure would obviously be 75% would benefit from taking DA's without side affects.
What right do we have in detering 75% of PWP TO TAKE A MEDICATION THAT COULD IMPROVE THEIR QUALITY OF LIFE ?
Does it really matter how many are affected.
I believe it to be 99.99% of those on DAs based on my experience. (Obviously there is a large spectrum of how they are affected.)
I also personally know of people who are affected by levadopa and have never taken DAs.
All drugs by their very nature cause side effects.
Whatever the number it is obvious people out there need to be informed and supported where necessary.
They also need the benefit of these drugs too. Because they are very necessary to enable us to function and live with a reasonable quality of life.
Rather than constantly going over and over the same ground why dont you ask the PUK to put a sticky on that states that there are potential compulsive issues with the drugs and that they need to be aware. Perhaps with a couple of examples of how people are affected. The leaflets that come with the drugs warn people and theirs been programs on tv so no one can doubt there is a potential problem.
Also give them best available advice.
Then you can have a thread that is devoted to better ways to help people manage the drugs that they have to take in order to live a better life.
I believe it to be 99.99% of those on DAs based on my experience. (Obviously there is a large spectrum of how they are affected.)
I also personally know of people who are affected by levadopa and have never taken DAs.
All drugs by their very nature cause side effects.
Whatever the number it is obvious people out there need to be informed and supported where necessary.
They also need the benefit of these drugs too. Because they are very necessary to enable us to function and live with a reasonable quality of life.
Rather than constantly going over and over the same ground why dont you ask the PUK to put a sticky on that states that there are potential compulsive issues with the drugs and that they need to be aware. Perhaps with a couple of examples of how people are affected. The leaflets that come with the drugs warn people and theirs been programs on tv so no one can doubt there is a potential problem.
Also give them best available advice.
Then you can have a thread that is devoted to better ways to help people manage the drugs that they have to take in order to live a better life.
hi Kyloe,
You have lost me with your last post, who said anything about deterring pwp from taking DA's? I think if you look back at my posts the emphasis is not about deterring pwp taking DA's or banning them. Its about raising the bar ensuring ALL Neurologists manage the potential risks better with their patients, and also getting drug companies to print CORRECT upto date info, thus enabling new pwp to make informed choices based FACT.
You have lost me with your last post, who said anything about deterring pwp from taking DA's? I think if you look back at my posts the emphasis is not about deterring pwp taking DA's or banning them. Its about raising the bar ensuring ALL Neurologists manage the potential risks better with their patients, and also getting drug companies to print CORRECT upto date info, thus enabling new pwp to make informed choices based FACT.
We all agree that deterring people from taking drugs is wrong don't we?
Its about better management of the potential problems that is the issue.
People should be aware of the problems but not discouraged from taking drugs that are beneficial to them.
I for one need mirapexin, it caused me problems but now I manage them through a reduced dose and an altered drug regime.
Its about better management of the potential problems that is the issue.
People should be aware of the problems but not discouraged from taking drugs that are beneficial to them.
I for one need mirapexin, it caused me problems but now I manage them through a reduced dose and an altered drug regime.
Full details of the Parkinson's UK action plan on compulsive and impulsive behaviours can be found at
http://www.parkinsons.org.uk/Docs/Impulsivecompulsivebehaviouractionplan2011.doc
This was drawn up following the Consultaion day held earlier in the year that brought together people affected by Parkinson's, professionals and researchers.
If anybody would like to contribute to this work please contact
campaigns @ parkinsons.org.uk
http://www.parkinsons.org.uk/Docs/Impulsivecompulsivebehaviouractionplan2011.doc
This was drawn up following the Consultaion day held earlier in the year that brought together people affected by Parkinson's, professionals and researchers.
If anybody would like to contribute to this work please contact
campaigns @ parkinsons.org.uk
Hi Leyther,
I think it would be a good idea for a forum to be set up, could call it simply
"Side effects of medication"
Perhaps it could follow the "Treatments" forum and the first forum topic could be about Impulsive control disorder and have a sticky placed on it. Then forum users could set up topics in relation to this and it wouldn't get burred in the forum. There would be no need for old threads to be constantly resurrected because all people need to do is use forum search to find information. A sticky would highlight awareness.
This present topic I feel is off putting to forum users, especially to anyone who is suffering with side effects. It's become to confrontational,people don't want to get involved in that, they don't want to enter a battle ground and fear being judged or ridiculed! They need to be encouraged to open up and seek help and support.
I think it would be a good idea for a forum to be set up, could call it simply
"Side effects of medication"
Perhaps it could follow the "Treatments" forum and the first forum topic could be about Impulsive control disorder and have a sticky placed on it. Then forum users could set up topics in relation to this and it wouldn't get burred in the forum. There would be no need for old threads to be constantly resurrected because all people need to do is use forum search to find information. A sticky would highlight awareness.
This present topic I feel is off putting to forum users, especially to anyone who is suffering with side effects. It's become to confrontational,people don't want to get involved in that, they don't want to enter a battle ground and fear being judged or ridiculed! They need to be encouraged to open up and seek help and support.
hi Tim,
Yes i am aware of this action plan pulled together in January 2011.
The key word though is "action" because I'm not sure if the plan has seen much action yet? I speak as someone who was asked by PUK 3 months ago, if i would be interested in being part of a steering group focused on delivering the action plan. Despite me saying YES i would be part of the steering group, i have heard no more. Also i put several ideas to Steve Ford some months ago regarding this issue? He agreed with a number of the points i raised, however once again despite promising to follow them up, i heard nothing more from PUK!
regards
Yes i am aware of this action plan pulled together in January 2011.
The key word though is "action" because I'm not sure if the plan has seen much action yet? I speak as someone who was asked by PUK 3 months ago, if i would be interested in being part of a steering group focused on delivering the action plan. Despite me saying YES i would be part of the steering group, i have heard no more. Also i put several ideas to Steve Ford some months ago regarding this issue? He agreed with a number of the points i raised, however once again despite promising to follow them up, i heard nothing more from PUK!
regards
Hi Blueeyes,
I also put ideas forward and was told I would be contacted again but heard nothing.
I also put ideas forward and was told I would be contacted again but heard nothing.
hi cutie,
I noticed recently that Steve Ford is now looking to recruit a PA, who is to be paid £30,000 a year? So if you add that to his current salary of circ £120,000, hopefully at a combined cost of £160,000 a year, we might now start getting some answers?
all the best
bluey
I noticed recently that Steve Ford is now looking to recruit a PA, who is to be paid £30,000 a year? So if you add that to his current salary of circ £120,000, hopefully at a combined cost of £160,000 a year, we might now start getting some answers?
all the best
bluey
Don't forget he recently took on a Finance Director at between £75k-£100k.
So the risk of suffering from OCDs if you take DAs has now been shown as 1 in 4.
(Those on high dosages 1 in 3; those under fifty 1 in 2). And patients who don't appear to suffer from OCDs right now still run an increasing risk whenever their dosage is increased.
It also seems likely that everyone has a DA threshold beyond which they will succumb to OCDs, but these vary greatly from person to person.
And finally there's an unknown number of sufferers out there "in hiding".
I think it's becoming clear that everyone[i/] is susceptible to DA/OCDs, it's just a case of what your threshold is.
(Those on high dosages 1 in 3; those under fifty 1 in 2). And patients who don't appear to suffer from OCDs right now still run an increasing risk whenever their dosage is increased.
It also seems likely that everyone has a DA threshold beyond which they will succumb to OCDs, but these vary greatly from person to person.
And finally there's an unknown number of sufferers out there "in hiding".
I think it's becoming clear that everyone[i/] is susceptible to DA/OCDs, it's just a case of what your threshold is.
Thank you for your input Tim, and its nice to know the Mods have real names too
How common is OCD?
OCD is one of the most common mental health conditions. It is estimated that up to 3 in 100 adults and up to 5 in 100 children and teenagers have OCD.
OCD usually starts in early adult life, with men tending to report earlier symptoms than women. However, OCD symptoms can begin at any time, including childhood.
The symptoms of OCD can range from mild to severe. For example, some people with OCD will spend about an hour a day engaged in obsessive compulsive thinking and behaviour. For others, the condition can completely take over their life.
The causes of OCD are unknown, although there are several theories.
http://www.nhs.uk/conditions/obsessive-compulsive-disorder/Pages/Introduction.aspx
OCD is one of the most common mental health conditions. It is estimated that up to 3 in 100 adults and up to 5 in 100 children and teenagers have OCD.
OCD usually starts in early adult life, with men tending to report earlier symptoms than women. However, OCD symptoms can begin at any time, including childhood.
The symptoms of OCD can range from mild to severe. For example, some people with OCD will spend about an hour a day engaged in obsessive compulsive thinking and behaviour. For others, the condition can completely take over their life.
The causes of OCD are unknown, although there are several theories.
http://www.nhs.uk/conditions/obsessive-compulsive-disorder/Pages/Introduction.aspx