Tank you very much Bogman for taking the time and trouble to attend the conference, and to report back to us.
I second that AB.......thank you Bogman.....xx
Thanks and threes are dificult are difficult , amn't they?
Hi Bogman,
Thanks for keeping us all updated. I also believe there is a relationship between DA dosage levels and the severity of impact, its a pity not all Neuro's and elderly care physicans understand that! The more time i spend working on the awareness campaign, the more shocked i become. Shocked by the vast difference in outcomes for patients being treated with DA's. This is still the case even now in 2012! The two key factors that keep coming up again and again are, high dose and poor health professional care equals big risk. Maybe we need to start putting a " health warning" label on some doctors as well as the medication.
However by June this year we will have ensured every unaware Neurologist and elderly care physician has been made aware!! Also they will be working to a nationwide medication management best practice in prescribing, managing and getting the best outcome from taking DA's.
On a separate point, we had the biggest ever coverage of Impulsive/Compulsive behaviours (ICB's) featured in the latest edition of The Parkinson Magazine. The response to the article has been overwhelming and certainly achieved its objective of raising the profile of ICB's among health professionals as well as PwP. Full details of this will be available next week when the ICB awareness campaign update goes on the Parkinson's UK website.
Regards
bluey
Thanks for keeping us all updated. I also believe there is a relationship between DA dosage levels and the severity of impact, its a pity not all Neuro's and elderly care physicans understand that! The more time i spend working on the awareness campaign, the more shocked i become. Shocked by the vast difference in outcomes for patients being treated with DA's. This is still the case even now in 2012! The two key factors that keep coming up again and again are, high dose and poor health professional care equals big risk. Maybe we need to start putting a " health warning" label on some doctors as well as the medication.
However by June this year we will have ensured every unaware Neurologist and elderly care physician has been made aware!! Also they will be working to a nationwide medication management best practice in prescribing, managing and getting the best outcome from taking DA's.
On a separate point, we had the biggest ever coverage of Impulsive/Compulsive behaviours (ICB's) featured in the latest edition of The Parkinson Magazine. The response to the article has been overwhelming and certainly achieved its objective of raising the profile of ICB's among health professionals as well as PwP. Full details of this will be available next week when the ICB awareness campaign update goes on the Parkinson's UK website.
Regards
bluey
Excellent news bogman and blueeyes! Look forward to the update.
Get them telt bluey.
Thanks for the hankies AB.
Are you sure you dont want them back. I just had a dab at either eye and a toot or two, followed by a honk, their still good though. (I have narrow nasal passages you see.)
Are you sure you dont want them back. I just had a dab at either eye and a toot or two, followed by a honk, their still good though. (I have narrow nasal passages you see.)
Please feel free to correct me if I'm wrong! This research cost Parkinsons UK a hell of a lot of money, as Bogman points out, but isn't it just telling us all what we have known for a number of years and certainly before 2008.
Whilst I am very grateful that at long last this issue is being taken more seriously, I do feel that this part of the information has simply been regurgitated from another source.
It seems to me that this is same sh..t different day!!
I just feel that Parkinson's UK could have gained that information from it's members, however perhaps I should not comment until Ive read the full report. Can I ask the mods how long we will have to wait for this please?
Whilst I am very grateful that at long last this issue is being taken more seriously, I do feel that this part of the information has simply been regurgitated from another source.
It seems to me that this is same sh..t different day!!
I just feel that Parkinson's UK could have gained that information from it's members, however perhaps I should not comment until Ive read the full report. Can I ask the mods how long we will have to wait for this please?
the things that are pullin me through my probs with money ,is that my carers when i go out have my money ,not me,my daughter has took my visa csrd off me stoppin me from spendin on line and sky tv.im havin councillin ,done by my gp,and puk helpline has been marvolous to me,all of these things even if i did not like doin at the time,is helpin me,and im very grateful to all of them,to pull me through,im gettin there 
Those PWP who are seriously OCD will not be controllable, as they'll get funds from absolutely ANYWHERE.
E.g. banks, credit cards, loan sharks, theft, fraud, selling everything they own, or owned by others.
Whilst DA/OCD I lost my house and everything in it. Plus hundreds of thousands of pounds, mostly defrauded or stolen from others. Needless to say I ended up in the Crown Court.
Take care.
.
E.g. banks, credit cards, loan sharks, theft, fraud, selling everything they own, or owned by others.
Whilst DA/OCD I lost my house and everything in it. Plus hundreds of thousands of pounds, mostly defrauded or stolen from others. Needless to say I ended up in the Crown Court.
Take care.
.
ray we are all differnt,some worse than others,im just sayin how iam,and wot help ive recived and its workin for me.now im sorry for wot happined to you,and to others who got to that stage in there life.and i should be grateful i have not.but i have probs,its been said i have and its bein dealt with for me,
I agree 100%. You have been, relatively, very lucky.
Dear Eck,
You are most welcome to keep the hankies. I hope that you liked the kingfishers that I embroidered on the corners. So sorry about your narrow nasal passages. But I bet it makes for a glorious voice!
You are most welcome to keep the hankies. I hope that you liked the kingfishers that I embroidered on the corners. So sorry about your narrow nasal passages. But I bet it makes for a glorious voice!
Hi glenchass,
Thanks for posting. We wanted to to address some of your concerns about this research.
Treatment for impulsive and compulsive behaviour usually involves reducing the dose of Parkinson’s medication, or trying other types of medication. But it can be tricky to get the balance right between controlling the movement symptoms of Parkinson’s and reducing impulsive and compulsive behaviour.
The study by Professor Anthony David and colleagues at the Institute of Psychiatry, at King’s College is the first of its kind and is important because it aims to develop a new approach that could help people with Parkinson’s and their carers manage impulsive and compulsive behaviour.
This project has two main goals:
· To help people to gain control over their impulsive and compulsive behaviour.
· To help carers come to terms with the behaviour of the person they care for and reduce the day to day strain on their relationship.
Participants, including people with Parkinson’s and their carers, have been allocated a dedicated Parkinson’s nurse who has experience and skills in mental health. During weekly home visits the nurse uses a talking based approach to help them find better ways of managing impulsive and compulsive behaviour.
Importantly, the treatment is tailored to the individual, but a number of different steps are likely to be involved. These include providing information, looking at beliefs and attitudes, and identifying things that seem to ‘trigger’ the behaviour. This will provide the basis for coping strategies for both the person with Parkinson’s and their carer. People will also be encouraged to use existing services such as the local community mental health team, their GP and social services.
Half of the people taking part started the therapy straight away, and the other half started after a six month delay. This will allow the researchers to compare the groups to measure the effects of the therapy.
This is a pilot study designed to test whether this type of treatment could be beneficial for people with Parkinson’s who experience impulsive and compulsive behaviour. If successful, the next step will be a larger trial.
This project is scheduled to finish this month. Parkinson’s UK will share the final results when they are available, which can usually take six months or more from completion of a project.
If people you'd like to find out about the opportunities to get involved in research, you can join our Research Support Network by writing to: [email protected]
We don't recruit people for clinical trials directly. But we do maintain a list of research studies that may be looking for people to take part. More info in the link below: http://www.parkinsons.org.uk/researchstudies
Senel
Research Communications manager
Thanks for posting. We wanted to to address some of your concerns about this research.
Treatment for impulsive and compulsive behaviour usually involves reducing the dose of Parkinson’s medication, or trying other types of medication. But it can be tricky to get the balance right between controlling the movement symptoms of Parkinson’s and reducing impulsive and compulsive behaviour.
The study by Professor Anthony David and colleagues at the Institute of Psychiatry, at King’s College is the first of its kind and is important because it aims to develop a new approach that could help people with Parkinson’s and their carers manage impulsive and compulsive behaviour.
This project has two main goals:
· To help people to gain control over their impulsive and compulsive behaviour.
· To help carers come to terms with the behaviour of the person they care for and reduce the day to day strain on their relationship.
Participants, including people with Parkinson’s and their carers, have been allocated a dedicated Parkinson’s nurse who has experience and skills in mental health. During weekly home visits the nurse uses a talking based approach to help them find better ways of managing impulsive and compulsive behaviour.
Importantly, the treatment is tailored to the individual, but a number of different steps are likely to be involved. These include providing information, looking at beliefs and attitudes, and identifying things that seem to ‘trigger’ the behaviour. This will provide the basis for coping strategies for both the person with Parkinson’s and their carer. People will also be encouraged to use existing services such as the local community mental health team, their GP and social services.
Half of the people taking part started the therapy straight away, and the other half started after a six month delay. This will allow the researchers to compare the groups to measure the effects of the therapy.
This is a pilot study designed to test whether this type of treatment could be beneficial for people with Parkinson’s who experience impulsive and compulsive behaviour. If successful, the next step will be a larger trial.
This project is scheduled to finish this month. Parkinson’s UK will share the final results when they are available, which can usually take six months or more from completion of a project.
If people you'd like to find out about the opportunities to get involved in research, you can join our Research Support Network by writing to: [email protected]
We don't recruit people for clinical trials directly. But we do maintain a list of research studies that may be looking for people to take part. More info in the link below: http://www.parkinsons.org.uk/researchstudies
Senel
Research Communications manager
As part of the OCD/DA scenario, in my experience and other posters', extreme euphoria is gained by getting away with the behaviour ,usually sexual activity and/or gambling, through lies, deceit covering of tracks etc, I don't see how someone can start the counselling "straight away".
Usually the behaviour is uncovered when it has destroyed finances , relationshipps and trust.
How were these people identified as having just embarked on obsessive and compulsive behaviour? Or had been at it for 6 months?
In my time on the forum and receiving private e-mails I have not come across anyone who told all as soon as the compulsions took over but many who lived a secret life until it fell apart.If the new regime is eventually implemented how will people be recruited for the counselling programme if noone knows what they are up to??
Usually the behaviour is uncovered when it has destroyed finances , relationshipps and trust.
How were these people identified as having just embarked on obsessive and compulsive behaviour? Or had been at it for 6 months?
In my time on the forum and receiving private e-mails I have not come across anyone who told all as soon as the compulsions took over but many who lived a secret life until it fell apart.If the new regime is eventually implemented how will people be recruited for the counselling programme if noone knows what they are up to??
I understand that some people, sometimes, have a bad reaction to these drugs. I was wondering if DAs cause these problems 'out of the blue', or are there warning signs from that personality before the DAs?
Do DAs start this abnormal behaviour from nothing? Or do they simply exacerbate a pre-existing personalty trait.
Do pathological gamblers come from 'normal' gamblers?
I ask because it seems that there is maybe a way of spotting who is going to be seriously affected by DAs by some sort of personality screening before they start the drugs?
Shot in the dark?
Do DAs start this abnormal behaviour from nothing? Or do they simply exacerbate a pre-existing personalty trait.
Do pathological gamblers come from 'normal' gamblers?
I ask because it seems that there is maybe a way of spotting who is going to be seriously affected by DAs by some sort of personality screening before they start the drugs?
Shot in the dark?
Whilst I was suffering OCDs under DAs, the areas of interest which took over my whole life were numerous and all-powerful; I was totally unable to control them. One thing is for sure, though. Prior to taking DAs I had no interest whatsoever in any of these areas, and had never shown any inclination in those directions whatsoever. Many of them, prior to being prescribed these drugs, would have disgusted me, and still do now that I'm back to normal.
It is very clear to me that the "choice" by my brain of certain "hobbies" was not based on any historical interest or familial tendencies but purely random. These included gambling, hyperspending, hypersexuality, use of prostitutes, cross dressing, reckless generosity, fetishism, exhibitionism, excessive risk taking, violence, suicide attempts and altered creativity (a sudden interest in writing poetry, stories and art).
I started with one area of interest, then another, then another, until I might be out of control in five or six areas on the same day. All hidden and supported by a normal facade, secret bank accounts, stolen money and a massive web of deceit.
As soon as I came off the DAs everything went back to normal straight away. I was horrified to find out some of the things I'd been up to.
It is very clear to me that the "choice" by my brain of certain "hobbies" was not based on any historical interest or familial tendencies but purely random. These included gambling, hyperspending, hypersexuality, use of prostitutes, cross dressing, reckless generosity, fetishism, exhibitionism, excessive risk taking, violence, suicide attempts and altered creativity (a sudden interest in writing poetry, stories and art).
I started with one area of interest, then another, then another, until I might be out of control in five or six areas on the same day. All hidden and supported by a normal facade, secret bank accounts, stolen money and a massive web of deceit.
As soon as I came off the DAs everything went back to normal straight away. I was horrified to find out some of the things I'd been up to.
Risk and danger were very important, though. When gambling for example, it seemed to be less important to WIN the money than to enjoy the thrill of the huge RISK of LOSING the gamble and thereby losing everything. Visiting call girls was more exciting because of the risk of getting caught than the for the pleasure of the visit itself. Wearing ladies' underwear beneath a business suit was exciting more because of the risk of being caught than for the enjoyment of the behaviour in itself. And so on.
This is a very common occurrence amongst those who suffer OCDs as a result of being prescribed DAs. The love of danger, the huge kick obtained by taking ridiculous risks. It was somehow feeding a new, desperate need of the brain which had never been there before.
This is a very common occurrence amongst those who suffer OCDs as a result of being prescribed DAs. The love of danger, the huge kick obtained by taking ridiculous risks. It was somehow feeding a new, desperate need of the brain which had never been there before.
Thank you Senel for you response to my previous post.
I must however agree with Golden Girl and I can relate to Ray of Sunshine's post too. I'm not sure how the behaviour can be detected straight away because it creeps on very slowly and usually over a number of years as in my and ROS case and I'm sure many others.
It's only when it gets completely out of control that it becomes obvious and as ROS clearly say's the person becomes incredibly devious and secretive.
My PD is advancing and as such I have had to accept treatment once again with a DA substance in conjunction with my usual meds. My PD nurse and husband are keeping a very close eye on me at the moment, however my husband recently admitted that when I was taking DA's last time I was so plausible that he had no idea of what I was up to.
I pray to God that this time we can spot the signs and I’m hardly leaving the house for fear of starting to shop excess once more.
Glenchass
I must however agree with Golden Girl and I can relate to Ray of Sunshine's post too. I'm not sure how the behaviour can be detected straight away because it creeps on very slowly and usually over a number of years as in my and ROS case and I'm sure many others.
It's only when it gets completely out of control that it becomes obvious and as ROS clearly say's the person becomes incredibly devious and secretive.
My PD is advancing and as such I have had to accept treatment once again with a DA substance in conjunction with my usual meds. My PD nurse and husband are keeping a very close eye on me at the moment, however my husband recently admitted that when I was taking DA's last time I was so plausible that he had no idea of what I was up to.
I pray to God that this time we can spot the signs and I’m hardly leaving the house for fear of starting to shop excess once more.
Glenchass
hi glenchass and goldern girl,as ive already stated on the forum on this thread that i been havin propbs with big probs with spendin money,me daughter took me visa card from me,and carers have control of my money when i go out with erm.i have to have someone with me when i go out anyway ,cus of different situations.im havin councilling,which was done through me gp and neuro,im not sure how they work out wot is wot about behavoiur etc with certain drugs,all i no is that i was put on this programe and im happy i have been .i no i may not be at the stage of nickin money etc,but i tell u wot i was bad enough,ive always said all along its down to close family and carers ,freinds to watch u like hawks when ur put on da drugs for any signs of any change in behavoiur,im on the road to recovery ,cus things worked out for me with all ive said.but it dont for alot,it worries me so much and i feel guilty that im recivein this care,but if it was not for my carers who come in to me home 4 times aday and my daughter ,goodness nows were it would of lead to.to every one who is havin the probs now,and no you are please seek help,if you can .i no it easy to say,and i no how hard it is,ino you would like it ,just like i did goin in to a store and spendin like mad.i just pray that the system works for all,and we get this sorted for the sake of pd sufferers