Like you say, feb not too far away now, so keep focused and get out the monopoly board! you can buy all those posh houses with that play money
Take care
Diane
Hi ali, really understand you must be scared about results of scan and this being the reason why you put it off, but PLEASE remember, all might reveal nothing more than PD progression! neuros just doing their job and going through process of elimination, even if they do find anything else it might help them give you proper diagnosis and effective treatment! :) Keep talking to Beckie, she clearly knows what to look out for and you have taught her well :) Everyday waiting for apt must seem like an eternity which in turn will increae your anxieties. Keep phoning helpline if you need to 'sound off' they will understand and hopefully offer strategies for coping, or keep e-mailing me(better than nothing!!)
Like you say, feb not too far away now, so keep focused and get out the monopoly board! you can buy all those posh houses with that play money
Take care
Diane
Like you say, feb not too far away now, so keep focused and get out the monopoly board! you can buy all those posh houses with that play money
Take care
Diane
Cheer up Ali xx
this all sounds extremely complicated to me. I was prescribed Sinemet in December and was already on azilect and rivastigmine. after reading about compulsive behaviour on the forum I was scared to take it and eventually spoke to a pd nurse in Jan. I have now started taking the sinemet and keep wondering if i would know i my behaviour changed or would i need oh to keep an eye on me and tell me id changed. I wonder if its still early days to be on these meds as i was diagnosed last march. Pat
Pegasus
I think you are being quite pragmatic about this issue. I have shown no signs of this behaviour even though I was, for a time, on these drugs. But even now I make a point if showing my wife the bank statements and other financial details.
She knows to warn me if my personality changes, but so far I've been lucky.
I suggest you get a 'responsible adult!!!' to keep an eye on you. I know that sounds ridiculous but maybe that's the answer to all this OCD nonsense.
Maybe we should all advocate a 'RESPONSIBLE ADULT' if you are on these drugs.
I think you are being quite pragmatic about this issue. I have shown no signs of this behaviour even though I was, for a time, on these drugs. But even now I make a point if showing my wife the bank statements and other financial details.
She knows to warn me if my personality changes, but so far I've been lucky.
I suggest you get a 'responsible adult!!!' to keep an eye on you. I know that sounds ridiculous but maybe that's the answer to all this OCD nonsense.
Maybe we should all advocate a 'RESPONSIBLE ADULT' if you are on these drugs.
drobb and polly ,thankyou
x and spam95 i totally agree with you about a sensible adult,this is exactly wot me beci is tellin me,im pullin me hair out and so low with it all,but deep down she is doin the correct thing to help me.AS SPAM SAYS SENSIBLE ADULT,KEEP EYE ON YOU
x and spam95 i totally agree with you about a sensible adult,this is exactly wot me beci is tellin me,im pullin me hair out and so low with it all,but deep down she is doin the correct thing to help me.AS SPAM SAYS SENSIBLE ADULT,KEEP EYE ON YOU
I have the greatest respect, sympathy and empathy with all who have the courage to post about their OCD problems. Telling your partner/O/H/carer is a good start. But if you are in the throws of it, nothing they can do or say will stop you doing what you feel compelled to do - be it gambling, spending, eating or inappropriate sexual behaviour. Talk to your neuro consultant. If necessary print out and take to him/her some of the graphic descriptions that are available on this site. There is an article in the latest PUK magazine which addresses this very issue..
I obviously do not know the answer - it could be a "talking cure" or (in my mind) a change of medication.
I wish you all the very best and an OCD free future
I obviously do not know the answer - it could be a "talking cure" or (in my mind) a change of medication.
I wish you all the very best and an OCD free future
Hi
As Liz mentioned in her recent post, we are having to limit the number of posts in each thread to 500 in order to ensure that the forum is able to keep running. The thread "Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders" is over this limit so I have closed that thread and moved all posts made this year into this new thread. No posts have been lost.
Tim
NB: The previous thread can be found here: http://bit.ly/zFzYVF
-Ezinda
As Liz mentioned in her recent post, we are having to limit the number of posts in each thread to 500 in order to ensure that the forum is able to keep running. The thread "Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders" is over this limit so I have closed that thread and moved all posts made this year into this new thread. No posts have been lost.
Tim
NB: The previous thread can be found here: http://bit.ly/zFzYVF
-Ezinda
It's important that newcomers reading this thread, either for general understanding or when seeking specific information for a current case, realise that the thread's predecessor [same title without the "(2)"] contains a mountain of background data.
That previous thread, closed on 6 January 2012 for the reasons stated, contains 71 pages of information (702 replies & 35,918 "hits") comprising previous experience, case studies, legal precedents, litigation, research and full details of real side effects. Also examples of the numerous previous cases of lives catastrophically wrecked forever due to a systemic (possibly collusive) failure to educate, warn, recognise or deal with DA/OCD cases quickly enough, with maximum commitment.
That previous thread, closed on 6 January 2012 for the reasons stated, contains 71 pages of information (702 replies & 35,918 "hits") comprising previous experience, case studies, legal precedents, litigation, research and full details of real side effects. Also examples of the numerous previous cases of lives catastrophically wrecked forever due to a systemic (possibly collusive) failure to educate, warn, recognise or deal with DA/OCD cases quickly enough, with maximum commitment.
Thanks Ray.
The related thread can be found here: http://bit.ly/zFzYVF
We will also add this link to the start of this follow-on thread.
Hope this helps!
Ezinda
The related thread can be found here: http://bit.ly/zFzYVF
We will also add this link to the start of this follow-on thread.
Hope this helps!
Ezinda
Am I going senile or have the posts made between Jan 25 and 31 been removed?
And has the thread title been changed from Obsessive to Impulsive?
Perhaps it's just me!
And has the thread title been changed from Obsessive to Impulsive?
Perhaps it's just me!
Hi goldengirl,
The name of the thread has remained the same as far as I'm aware: Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders. The title has not been changed to include "impulsive".
Also, we haven't removed any posts. We've just split the thread. However, if anyone made a post between those dates and notes that they are missing, do let us know and we'll look into it.
Ezinda
The name of the thread has remained the same as far as I'm aware: Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders. The title has not been changed to include "impulsive".
Also, we haven't removed any posts. We've just split the thread. However, if anyone made a post between those dates and notes that they are missing, do let us know and we'll look into it.
Ezinda
Hi Ezinda.
The heading on the first (main) menu, i.e. at the top level, DOES now say "Impulsive and compulsive behaviour". I think it used to say "Treatments".
It's only when you drill down 1 or more levels that the original heading appears.
Ray.
The heading on the first (main) menu, i.e. at the top level, DOES now say "Impulsive and compulsive behaviour". I think it used to say "Treatments".
It's only when you drill down 1 or more levels that the original heading appears.
Ray.
Hi Ray,
It is true that we've added a new section called Impulsive and compulsive behaviour after the old Treatments section. You can read more about this new addition in the stickies for this section.
However, we've simply migrated the two parts of theDopamine Agonists and catastrophic Obsessive/Compulsive Disorders thread here without changing the name of that thread.
Hope this answers your question.
Ezinda
It is true that we've added a new section called Impulsive and compulsive behaviour after the old Treatments section. You can read more about this new addition in the stickies for this section.
However, we've simply migrated the two parts of theDopamine Agonists and catastrophic Obsessive/Compulsive Disorders thread here without changing the name of that thread.
Hope this answers your question.
Ezinda
The heading is now definitely "Impulsive" not "Obsessive"
When and why was this change made?
Our experience was of obsessive and compulsive destructive behaviour.
Impulsive sounds so much less deranged and as if it happened now and again on a bit of a whim!
When and why was this change made?
Our experience was of obsessive and compulsive destructive behaviour.
Impulsive sounds so much less deranged and as if it happened now and again on a bit of a whim!
I completely agree with Golden Girl. Anyone who has lived through the ordeal of the side effects of DAs would not describe the behaviour as 'impulsive' - my husband's behaviour was completelyobsessive. People reading this thread need to be aware that these side effects can be life-changing and relationship changing - as Golden Girl and I, and many others, are still trying to come to terms with.
Whilst not wishing to frighten people - as we know many have no significant side effects on these drugs and find them beneficial - we can also not make light of the damage they have done to some peoples lives.
Whilst not wishing to frighten people - as we know many have no significant side effects on these drugs and find them beneficial - we can also not make light of the damage they have done to some peoples lives.
I was just trying to help explain what had happened to the headings.
"Impulsive" is definitely a misnomer - one used a lot by drug companies. Unfortunately it has wrongly been picked up by other parties - much to the former's glee as it dilutes the word's effect.
I can assure you that what I endured for every second of every day for seven long years was compulsive, and not impulsive.
"Impulsive" is definitely a misnomer - one used a lot by drug companies. Unfortunately it has wrongly been picked up by other parties - much to the former's glee as it dilutes the word's effect.
I can assure you that what I endured for every second of every day for seven long years was compulsive, and not impulsive.
Hi goldengirl,
I see your question a bit better now.
Let me try to clarify:
There was not a change, as such. Though the thread that community members started some time ago included the term "obsessive", the work that the steering group has been doing is to address both impulsive and compulsive behaviour in Parkinson's. The terms were chosen because they have a specific meaning:
Impulsive behaviour is when a person can't resist the temptation to carry out certain activities that could lead them to harm themselves or others. In many cases, this behaviour is out of character.
Compulsive behaviour is when a person has an overwhelming drive or urge to act in a certain way, often repetitively, to reduce the worry or tension that they get from their drive or urge.
You can read more about this in our information sheet which you can find here: http://www.parkinsons.org.uk/compulsivebehaviour
Ezinda
I see your question a bit better now.
Let me try to clarify:
There was not a change, as such. Though the thread that community members started some time ago included the term "obsessive", the work that the steering group has been doing is to address both impulsive and compulsive behaviour in Parkinson's. The terms were chosen because they have a specific meaning:
Impulsive behaviour is when a person can't resist the temptation to carry out certain activities that could lead them to harm themselves or others. In many cases, this behaviour is out of character.
Compulsive behaviour is when a person has an overwhelming drive or urge to act in a certain way, often repetitively, to reduce the worry or tension that they get from their drive or urge.
You can read more about this in our information sheet which you can find here: http://www.parkinsons.org.uk/compulsivebehaviour
Ezinda
Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders II
I could ruddy well weep
I could ruddy well weep
Dear Eck,
Some handkerchiefs are on their way. (You may keep them)
Some handkerchiefs are on their way. (You may keep them)
I attended a project visit today at Kings College Hospital Psychiatric Department. This was to hear a preliminary report on Managing impulsive and compulsive behaviour research, which had been carried out by Professor Anthony David and his team on behalf of Parkinson's UK.
The research which has now concluded started in July 2008 at a cost of £333,333. Try saying that if you are an Irishman.
What follows is a very brief summary of the preliminary report and in no way encompasses the full project. I do not have a background in science, medicine or psychiatry so I am reporting this purely from a lay perspective. I am however very pleased that such research has been carried out so that more lives and relationships are not ruined by these side effects
The aim of the study is to develop a new approach that can help people with Parkinson's and their carers to cope with the problems and devise a treatment manual. This manual will provide guidance for the treatment of the disorder and uniformity of approach. It was acknowledged that each case is different and PWP’s response time varied. It was also indicated that in some instances there is no need for counselling because as the DA’s are tweaked the condition abates.
Two separate groups were assessed. The group that received treatment from day one which consisted of between 9 and 12 counselling sessions showed great improvement over the period. The second group’s treatment started 6 months later and whilst showing significant improvement they did not achieve the same level as the first group. This indicated that the need is to start counselling as soon as possible.
Professor David pointed out that side effects tended to occur when larger doses were taken although there are known cases where low doses have been prescribed. He also said that in the main the actual side effect, such as gambling, over eating etc... is an accentuation of something that the PWP takes pleasure in. It also appeared to seeek out " Risk Takers". Once again he pointed out that there were exceptions, where people have absolutely no history, particularly where gambling is concerned.
The feedback regarding Carers and counselling was rather depressing insofar as the partner of a PWP with OCD/ICD showed no significant improvement at all.
I believe this is a very important project and will provide the guidance and help required to diagnose and treat the side effects before they
reach the truly destructive phase.
Parkinson’s UK will publish a summary when the final analysis has been completed. It should make very interesting reading.
The research which has now concluded started in July 2008 at a cost of £333,333. Try saying that if you are an Irishman.
What follows is a very brief summary of the preliminary report and in no way encompasses the full project. I do not have a background in science, medicine or psychiatry so I am reporting this purely from a lay perspective. I am however very pleased that such research has been carried out so that more lives and relationships are not ruined by these side effects
The aim of the study is to develop a new approach that can help people with Parkinson's and their carers to cope with the problems and devise a treatment manual. This manual will provide guidance for the treatment of the disorder and uniformity of approach. It was acknowledged that each case is different and PWP’s response time varied. It was also indicated that in some instances there is no need for counselling because as the DA’s are tweaked the condition abates.
Two separate groups were assessed. The group that received treatment from day one which consisted of between 9 and 12 counselling sessions showed great improvement over the period. The second group’s treatment started 6 months later and whilst showing significant improvement they did not achieve the same level as the first group. This indicated that the need is to start counselling as soon as possible.
Professor David pointed out that side effects tended to occur when larger doses were taken although there are known cases where low doses have been prescribed. He also said that in the main the actual side effect, such as gambling, over eating etc... is an accentuation of something that the PWP takes pleasure in. It also appeared to seeek out " Risk Takers". Once again he pointed out that there were exceptions, where people have absolutely no history, particularly where gambling is concerned.
The feedback regarding Carers and counselling was rather depressing insofar as the partner of a PWP with OCD/ICD showed no significant improvement at all.
I believe this is a very important project and will provide the guidance and help required to diagnose and treat the side effects before they
reach the truly destructive phase.
Parkinson’s UK will publish a summary when the final analysis has been completed. It should make very interesting reading.