I just want to add my voice in support of everyone trying so hard to sort this mess out. Well done ... action is so important.
We saw my OH's neurologist the other day - this is post-Mirapexin, so we see each other at weekends and hospital appointments, our marriage having been destroyed by the DAs and surviving in a shadowy form now. We talked about Mirapexin, as one would a past enemy, and although I have nothing but praise for the speed with which he took my husband off the drug, he said something which chilled me: he said, who was he to say that it was wrong if a PD patient suddenly took up pornography - in other words, who is he to 'judge'? How depressing. How utterly depressing. Of course preoccupation with porn is a red-blooded male's right - and the trouble here is it is probably the only manifestation of a behavioural change that a wife is prepared to mention to a medic. And if that medic snorts and thinks to himself, well if I was married to her I'd take up porn too, then this change in behaviour (and all the loopy stuff that's going on behind the scenes) will be disregarded.
Any comment?
And by the way .... has anyone noticed that (as Libra Lady mentioned) once you go off the Mirapexin it makes no difference to movement anyway? Has anyone said in this string something like - "I had to go off it and boy I suffered and can't move much now but I got my marbles back so it was worth it"? NO, they haven't. So can someone tell me why the damn thing is prescribed in the first place? The withdrawal symptoms are awful, the behavioural symptoms are insidious, but can anyone truly say they are worse off without it?
Hi surrey dreamer,
I read your post with interest but also sadness I admire your honesty for discussing with the neurologist, for a year I realised that something was not right with our marriage and o/h behaviour i stumbled on our PC, numerous visits to porn sites all which ended with my confronting o/h and he becoming very defensive, total denial and worst of all violent as 'it was all my fault'
That is when the neurologist sat up and took notice !!!!! he had very little comment also to say about the porn, as you said do they think it is the norm shame they do not take into account that they had known my o/h for the previous 8 years.
Agree they do not explain about the side effects , they quickly responded by taking him off but said very little. I work in the same hospital as this neurologist and when /I see him on the wards he can't even look me in the eye. (Now have a new neurologist though, very eminent apparently but don't get to see him often, thank goodness we have a brill PD CNS
Unfortunately 6 months after this he was prescribed apogo sub cut which is part of the DA family, how could i say no as he was told this was the only drug to use in an emergency when he had an attack of dystonia in his diaphragm.
not sure if anyone is aware but they use apogo for men with erectile dysfunction also , they have to inject it directly though into .... !!!!
the only advice i was given was to keep an eye on him for behaviour change !!!!!
Was really sorry to hear how it has affected your relationship, keep strong.
Ray of sunshine
Which thread is the campaign on , must be me but can't find it would like to give my support.Sounds like you are a supportive meber of this forum
To all, sorry but must say this, do find some of the negative comments very 'bitchy' my thoughts are if you do not like the nature of the thread don't read it ? !!! apologies x
I read your post with interest but also sadness I admire your honesty for discussing with the neurologist, for a year I realised that something was not right with our marriage and o/h behaviour i stumbled on our PC, numerous visits to porn sites all which ended with my confronting o/h and he becoming very defensive, total denial and worst of all violent as 'it was all my fault'
That is when the neurologist sat up and took notice !!!!! he had very little comment also to say about the porn, as you said do they think it is the norm shame they do not take into account that they had known my o/h for the previous 8 years.
Agree they do not explain about the side effects , they quickly responded by taking him off but said very little. I work in the same hospital as this neurologist and when /I see him on the wards he can't even look me in the eye. (Now have a new neurologist though, very eminent apparently but don't get to see him often, thank goodness we have a brill PD CNS
Unfortunately 6 months after this he was prescribed apogo sub cut which is part of the DA family, how could i say no as he was told this was the only drug to use in an emergency when he had an attack of dystonia in his diaphragm.
not sure if anyone is aware but they use apogo for men with erectile dysfunction also , they have to inject it directly though into .... !!!!
the only advice i was given was to keep an eye on him for behaviour change !!!!!
Was really sorry to hear how it has affected your relationship, keep strong.
Ray of sunshine
Which thread is the campaign on , must be me but can't find it would like to give my support.Sounds like you are a supportive meber of this forum
To all, sorry but must say this, do find some of the negative comments very 'bitchy' my thoughts are if you do not like the nature of the thread don't read it ? !!! apologies x
.
Surrey Dreamer:
When I was taken off DAs (Cabergoline) all my OCD problems stopped, I regained my sanity for the first time in 7 years, and I discovered how much money I'd got through (£400k).
HOWEVER my physical mobility deteriorated considerably; the DA had been excellent at improving all my physical PD symptoms, but unfortunately screwed my brain up.
The lack of mobility was the price I had to pay to get my head back.
Bubble x:
The campaign thread was only started a couple of days ago, on:
Home > Forum > Treatments > DOPAMINE AGONIST CAMPAIGN
.
Surrey Dreamer:
When I was taken off DAs (Cabergoline) all my OCD problems stopped, I regained my sanity for the first time in 7 years, and I discovered how much money I'd got through (£400k).
HOWEVER my physical mobility deteriorated considerably; the DA had been excellent at improving all my physical PD symptoms, but unfortunately screwed my brain up.
The lack of mobility was the price I had to pay to get my head back.
Bubble x:
The campaign thread was only started a couple of days ago, on:
Home > Forum > Treatments > DOPAMINE AGONIST CAMPAIGN
.
Thanks for that R of S will have look, As you said less mobility is a price worth paying. did you make that decison for yourself or did you realise it was affecting your loved ones, i have read what an awful time you have had, without sounding patronising which i am not, i am really sorry.
Bl..dy PD most people do not realise how awful it is !
Bl..dy PD most people do not realise how awful it is !
I knew my behaviour was all wrong and out of control, but I didn't know why I was behaving like that. As soon as I discovered it was down to the drug I hot footed it to the neuro and demanded it be stopped pronto!
.
.
R of S
Thanks for sharing info, it does help. O/H does realise what the DA was doing and is much better since stopping them , but as said before the D/Dystonia is frightening when he can't get his breath and the Apogo only thing that helps.
It is more controllable now and he does not have huge dose, still scary though.
He hasn't really got to the point of totally agreeing that the DA's caused the behaviour change, think that is down to embarrassment, pride and a little ' ostrich syndrome !
Debated for ages about joining the forum glad i have
Thanks for sharing info, it does help. O/H does realise what the DA was doing and is much better since stopping them , but as said before the D/Dystonia is frightening when he can't get his breath and the Apogo only thing that helps.
It is more controllable now and he does not have huge dose, still scary though.
He hasn't really got to the point of totally agreeing that the DA's caused the behaviour change, think that is down to embarrassment, pride and a little ' ostrich syndrome !
Debated for ages about joining the forum glad i have
hi bubble x
What your OH is going through is quite common for someone battling with the demons of withdrawing from an addictive drug that caused OCD behavioural problems. My Uncle has helped a number of people (without PD) who became addicted to Dopamine Agonists. He told me based on over 20 years experience as a Counsellor, the impact of DA's on the brain if taken at high dosage levels is the same as if you were taking Cocaine! What you will also find as your OH dosage is lowered, he may develop psychosis and become moody or depressed. This is the same as someone who is being weaned of class A drugs. Furthermore you could find at some point your OH contemplates going back on to a higher dosage. Again this can be part of the effect of withdrawing from these drugs. Because he will start losing the feeling of thrill seeking that the DA's gave him at high dosage levels. So you must keep an eye on him and ensure he does not up his dosage again without you knowing about it.
I have learned so much about DA's over the last few years because of what i went through back in 2002/04. So please do not hesitate to email me if you want any further help or advise on how to cope with your OH lowering his dosage.
What your OH is going through is quite common for someone battling with the demons of withdrawing from an addictive drug that caused OCD behavioural problems. My Uncle has helped a number of people (without PD) who became addicted to Dopamine Agonists. He told me based on over 20 years experience as a Counsellor, the impact of DA's on the brain if taken at high dosage levels is the same as if you were taking Cocaine! What you will also find as your OH dosage is lowered, he may develop psychosis and become moody or depressed. This is the same as someone who is being weaned of class A drugs. Furthermore you could find at some point your OH contemplates going back on to a higher dosage. Again this can be part of the effect of withdrawing from these drugs. Because he will start losing the feeling of thrill seeking that the DA's gave him at high dosage levels. So you must keep an eye on him and ensure he does not up his dosage again without you knowing about it.
I have learned so much about DA's over the last few years because of what i went through back in 2002/04. So please do not hesitate to email me if you want any further help or advise on how to cope with your OH lowering his dosage.
Hi blueeyes47,
I see the hard work and advice you give along with Ray of Sunshine and others.I am supportive of anything surrounding DA's which is beneficial,,and helpful in avoiding future problems.
I just want to assure you that there is no game of ping-pong,but must return the ball in defence of Lily,who in seeing through my posting "what shall i say",has put herself in the firing line for my statement.The shark statement,i believe was a reference to the Titanic posts and not meant personally.
It just shows that saying nothing is still not good enough.I actually had a draft ready before that posting about concerns over statistics,and agendas,and pigeon holing of those on DA's like myself.I don't have much time for politics,ive seen the damage and hurt caused.The angry outbursts by politicians.I can't help but see that anger in some of your posts.
I would have thought more sensitivity would be shown to those of us on DA's who are in he middle of this DA wrangle,actually taking the medication now.Who in trying to give their opinion,are often attacked because we have positive things to say.Surely all information is important regarding current treatment,but many are put off by the aggressive,political stance sometimes employed by those who should be compassionate and understanding.Please realise the importance of ALL views of those currently on DA's,we are not a number,we are real people united in this struggle.
All the best
Titan.
I see the hard work and advice you give along with Ray of Sunshine and others.I am supportive of anything surrounding DA's which is beneficial,,and helpful in avoiding future problems.
I just want to assure you that there is no game of ping-pong,but must return the ball in defence of Lily,who in seeing through my posting "what shall i say",has put herself in the firing line for my statement.The shark statement,i believe was a reference to the Titanic posts and not meant personally.
It just shows that saying nothing is still not good enough.I actually had a draft ready before that posting about concerns over statistics,and agendas,and pigeon holing of those on DA's like myself.I don't have much time for politics,ive seen the damage and hurt caused.The angry outbursts by politicians.I can't help but see that anger in some of your posts.
I would have thought more sensitivity would be shown to those of us on DA's who are in he middle of this DA wrangle,actually taking the medication now.Who in trying to give their opinion,are often attacked because we have positive things to say.Surely all information is important regarding current treatment,but many are put off by the aggressive,political stance sometimes employed by those who should be compassionate and understanding.Please realise the importance of ALL views of those currently on DA's,we are not a number,we are real people united in this struggle.
All the best
Titan.
Hi All
In reply to any suggestion that there is no point in warning people about the effects of DA's. or, what if they are on their own, or, how are they gong to be monitored, etc etc. I am reminded of the old joke "Don't take, a parachute, it might not work"
Jonathan
In reply to any suggestion that there is no point in warning people about the effects of DA's. or, what if they are on their own, or, how are they gong to be monitored, etc etc. I am reminded of the old joke "Don't take, a parachute, it might not work"
Jonathan
Dear Glenchass, I tried to post a reply last night but has gone astray. You are indeed correct - I am looking for guidelines perhaps unrealistically. I find vague warnings (my consultant "watch out for swollen ankles & gambling") go in one ear & out the other. And dire warnings are difficult to contemplate. I am truely sorry for your predicament. I also envy you your consultant! - seems to be an enlightened person?
Hi Titan
The sensitivity, Compassion and understanding you talk about me needing to embrace towards yourself and Lily, is of course a two way street. With regards to me sometimes behaving like an Angry Politician or having a Political agenda, i can assure your wrong on both accounts. The only agenda i hold is one of people taking Responsibility for the Position or Office they hold. By this I'm referring to the Medical profession and those organisations who are supposed to be involved in our care.
Back in 2002 when my life was thrown off the tracks by DA's the excuse used then was, we did not know about the risks! Here we are now in 2010 and i don't think a week goes by without new horror stories about OCD side effects being posted here and on other media channels. Most of the stories involve PWP or partners being unaware or mis-informed concerning any potential OCD risks. I think its about time every Doctor, Drug Company and Support Organisation started facing up too and dealing with this issue, once and for all and stop sweeping it under the carpet.
I fully acknowledged on several occasions, that 4 out of 5 people do not experience serious OCD side effects. However given the level of awareness that now exists within the medical profession compared to several years ago, i believe its totally unacceptable upto 1 in 5 people are being subjected to serious OCD side effects due to some sort of medical care "post code" lottery. It feels to me the Drug companies, Doctors and Support Organisations need to start dealing with this issue in a joined up way.
In conclusion and by way of closure from me, i just wanted to say; I know in my heart and despite the occasional verbal ping pong tournament between us, that you and Lily do understand that "there by the grace of god" it could of been you!
The sensitivity, Compassion and understanding you talk about me needing to embrace towards yourself and Lily, is of course a two way street. With regards to me sometimes behaving like an Angry Politician or having a Political agenda, i can assure your wrong on both accounts. The only agenda i hold is one of people taking Responsibility for the Position or Office they hold. By this I'm referring to the Medical profession and those organisations who are supposed to be involved in our care.
Back in 2002 when my life was thrown off the tracks by DA's the excuse used then was, we did not know about the risks! Here we are now in 2010 and i don't think a week goes by without new horror stories about OCD side effects being posted here and on other media channels. Most of the stories involve PWP or partners being unaware or mis-informed concerning any potential OCD risks. I think its about time every Doctor, Drug Company and Support Organisation started facing up too and dealing with this issue, once and for all and stop sweeping it under the carpet.
I fully acknowledged on several occasions, that 4 out of 5 people do not experience serious OCD side effects. However given the level of awareness that now exists within the medical profession compared to several years ago, i believe its totally unacceptable upto 1 in 5 people are being subjected to serious OCD side effects due to some sort of medical care "post code" lottery. It feels to me the Drug companies, Doctors and Support Organisations need to start dealing with this issue in a joined up way.
In conclusion and by way of closure from me, i just wanted to say; I know in my heart and despite the occasional verbal ping pong tournament between us, that you and Lily do understand that "there by the grace of god" it could of been you!
Hi
Thanks for all your comments and ideas. I have passed these on to our Campaigns officer, Sachin Shah, and recieved this response.
"It's great that so many of you have so many ideas on how we can do more to make people aware of Impulsive and compulsive behaviours. We would really like to hear from you so we have organised a discussion day on the 13th Jan at our offices in London to which you are invited. We recognize that not everybody will be able to make this so please feel free to contact me with any questions or ideas. Full details of the actions that we have already taken to raise awareness of this issue can be found at http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx
Having your input at this stage, as we plan what to do next, is invaluable and will really mean that we will be responding to the views of people affected by Parkinson’s.
If you would like to come or would like to discuss anything , please email Sachin Shah on campaigns @ parkinsons.org.uk or call on 020 7963 9332"
Tim
Forum Moderator
Thanks for all your comments and ideas. I have passed these on to our Campaigns officer, Sachin Shah, and recieved this response.
"It's great that so many of you have so many ideas on how we can do more to make people aware of Impulsive and compulsive behaviours. We would really like to hear from you so we have organised a discussion day on the 13th Jan at our offices in London to which you are invited. We recognize that not everybody will be able to make this so please feel free to contact me with any questions or ideas. Full details of the actions that we have already taken to raise awareness of this issue can be found at http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx
Having your input at this stage, as we plan what to do next, is invaluable and will really mean that we will be responding to the views of people affected by Parkinson’s.
If you would like to come or would like to discuss anything , please email Sachin Shah on campaigns @ parkinsons.org.uk or call on 020 7963 9332"
Tim
Forum Moderator
Hi Tim
Great news this is a positive step forward from PUK. I have just emailed Sachin to confirm my attendance at the meeting on 13 Jan 2011.
If there is anyone from the forum who wants to be involved but cant get to London on the 13th, then email me with your comments and i shall be more than happy to put them forward.
Great news this is a positive step forward from PUK. I have just emailed Sachin to confirm my attendance at the meeting on 13 Jan 2011.
If there is anyone from the forum who wants to be involved but cant get to London on the 13th, then email me with your comments and i shall be more than happy to put them forward.
I am so pleased that at last the Parkinson's society is taking the problem seriously.
I have sent the information about the meeting to our Parkinin's nurse and welfare officer and they are contacting all clients suffering from the effects of these dreadful drugs and asking them to send their stories to Sachin Shah.
They will also send a representative from our area to the meeting.
I wonder if it would be possible for all those who contribute to this forum to contact their nurses and welfare officers and urge them to do the same?
I send my thanks to all of you who are working so hard to prevent this nightmare from being suffered by others.
Love
Goldengirl...still struggling.
I have sent the information about the meeting to our Parkinin's nurse and welfare officer and they are contacting all clients suffering from the effects of these dreadful drugs and asking them to send their stories to Sachin Shah.
They will also send a representative from our area to the meeting.
I wonder if it would be possible for all those who contribute to this forum to contact their nurses and welfare officers and urge them to do the same?
I send my thanks to all of you who are working so hard to prevent this nightmare from being suffered by others.
Love
Goldengirl...still struggling.
I've had PD for approx 3 years (59 y.o.)and its my right side thats affected. Not on any meds yet (my choice) but when asked what meds I would be put on, my neuro said DA's. Is this what everyone gets put on firstly or does it depend on your symptoms or neuro? I welcome any information on DA's be it for or against. Renee x
Hi Renee
It does seem that DAs are the first drug that neuros think of for new patients.
It would seem that 4 out of 5 patients suffer no OCD side effects and benefit from these drugs.
However, the 1 in 5 who suffer dreadful side effects tell their stories in this forum.
The message seems to be that you and your partner/care need to monitor the situation very carefully and report immediately if there is any change which might suggest you are beginning to develop side effects.
If I had known that my husband was becoming deceitful and secretive to cover his madness, we would not be in the terrible situation we find ourselves in now.
Watch out for increased dpending, unusual interest in sexual activities, overeating etc.
Look back at earlier posts for the wide variety of compulsions that overwhelm some on DAs.
Good luck!
It does seem that DAs are the first drug that neuros think of for new patients.
It would seem that 4 out of 5 patients suffer no OCD side effects and benefit from these drugs.
However, the 1 in 5 who suffer dreadful side effects tell their stories in this forum.
The message seems to be that you and your partner/care need to monitor the situation very carefully and report immediately if there is any change which might suggest you are beginning to develop side effects.
If I had known that my husband was becoming deceitful and secretive to cover his madness, we would not be in the terrible situation we find ourselves in now.
Watch out for increased dpending, unusual interest in sexual activities, overeating etc.
Look back at earlier posts for the wide variety of compulsions that overwhelm some on DAs.
Good luck!
Thanks Goldengirl and everyone else who have posted their DA experiences as I have found them invaluable. x
For info:
http://www.thesun.co.uk/sol/homepage/news/3250877/Drug-made-me-put-on-dress-and-bet.html
Ray.
.
http://www.thesun.co.uk/sol/homepage/news/3250877/Drug-made-me-put-on-dress-and-bet.html
Ray.
.
Its no wonder a lot people who have experienced serious OCD side effects are frightened of telling their story! Particularly when you read the string of abusive remarks from ill informed members of the public at the end of the Sun's story.
I would love to be able to take those individuals (who think its a joke), and make them take DA's at very high dosage levels! Then we can all sit back and have a good old laugh, as one by one they start hitting the self destruct button.......
I would love to be able to take those individuals (who think its a joke), and make them take DA's at very high dosage levels! Then we can all sit back and have a good old laugh, as one by one they start hitting the self destruct button.......