Titan, AB, so sorry to read your latest posts, you just need tweeking, I was tweaked - didn't do me any harm.
You can recognise what's happening and you can take steps to sort it.
You have to keep being honest above all else. Losing trust has been by far the hardest part of this whole thing.
All the very best.
I hesitated to post this Q here. I consider this topic along with the Meet & Greet thread to be the most important on this forum. But as I cannot think of a more appropriate place...
Am I correct or mistaken in thinking that once a consultant has seen you & decided upon a drug regeime, your day to day care is handed over to your GP or PD nurse until your next neuro appt?
So what do I do? My medication was revised by a consultant (no 2) in April as she disagreed with the consultant(no 1) that I last saw in I saw in October 2010. My next appointments are August with no 1 & Dec with no 2.I do not have a PD nurse I am told that it is simply a matter of lack of local resouces. My GP freely admits that he has little knowledge of PD medication. I am unable to get an earlier appt with either consultant. Whilst I have learned much from this forum, I do not feel confident to tweak without advice. I do not of course expect medical advice here, but maybe someone has aa suggestion?
Am I correct or mistaken in thinking that once a consultant has seen you & decided upon a drug regeime, your day to day care is handed over to your GP or PD nurse until your next neuro appt?
So what do I do? My medication was revised by a consultant (no 2) in April as she disagreed with the consultant(no 1) that I last saw in I saw in October 2010. My next appointments are August with no 1 & Dec with no 2.I do not have a PD nurse I am told that it is simply a matter of lack of local resouces. My GP freely admits that he has little knowledge of PD medication. I am unable to get an earlier appt with either consultant. Whilst I have learned much from this forum, I do not feel confident to tweak without advice. I do not of course expect medical advice here, but maybe someone has aa suggestion?
Hi Annebernadette,
I would say your posting is highly relevant here considering our last conversations on this thread.You highlight a problem of inaccessibility when it comes to concerns regarding your treatment/meds when no pd nurse is available.I count myself lucky that if need be,i can contact a pd nurse or leave a message,then receive a return call.
As far as i am aware,you should have at least a contact phone number.I would find it,voice your concerns,even if speaking to a receptionist, and try and bring forward any appointment if possible.I was assuming that you had an impending appointment like myself.
To be under two consultants with conflicting views is concerning.It must make you feel unsure of your treatment.You need one you can trust.I agree that G.P,S have little knowledge.However they can be instrumental in referring you,or bringing forward your appointment by direct contact.
I would act now because i think you need professional reassurance which you should not have to wait for.
Keep us informed
All the best
Titan
I would say your posting is highly relevant here considering our last conversations on this thread.You highlight a problem of inaccessibility when it comes to concerns regarding your treatment/meds when no pd nurse is available.I count myself lucky that if need be,i can contact a pd nurse or leave a message,then receive a return call.
As far as i am aware,you should have at least a contact phone number.I would find it,voice your concerns,even if speaking to a receptionist, and try and bring forward any appointment if possible.I was assuming that you had an impending appointment like myself.
To be under two consultants with conflicting views is concerning.It must make you feel unsure of your treatment.You need one you can trust.I agree that G.P,S have little knowledge.However they can be instrumental in referring you,or bringing forward your appointment by direct contact.
I would act now because i think you need professional reassurance which you should not have to wait for.
Keep us informed
All the best
Titan
Annbernadette
I am so sorry you are left to suffer.Could you ring the PD helpline?
They understand all th issues related to DASand trained nurses can offer advice and help.The fact that you have identified a potantial problem means you need help now and should't have to wait as things get worse.
Good luck!X
I am so sorry you are left to suffer.Could you ring the PD helpline?
They understand all th issues related to DASand trained nurses can offer advice and help.The fact that you have identified a potantial problem means you need help now and should't have to wait as things get worse.
Good luck!X
Hi Abd,
I agree with Titan, you need one Neurologist you can trust. You shouldn't have to wait so long , when you need help now. As i told you when we p/m ed, recently, i had to go down the private route , when i was so unwell and out of kilter with my meds. and other things. My own Neuro and Parkinsons nurse had a fixed idea of my treatment and left my care solely to my G.P. who also knows little about our condition.
I was getting no help from either and didn't know where next to turn.
I think your G.P. could be instrumental in trying hard , on your behalf to get you an appointment as soon as possible with the second Consultant.
My private Neuro found i was under medicated , and has given me a completely new drug regime. Thank goodness i got help , am really good now. Will talk some more later , am on my way out now .
All the best.
Lorna.
I agree with Titan, you need one Neurologist you can trust. You shouldn't have to wait so long , when you need help now. As i told you when we p/m ed, recently, i had to go down the private route , when i was so unwell and out of kilter with my meds. and other things. My own Neuro and Parkinsons nurse had a fixed idea of my treatment and left my care solely to my G.P. who also knows little about our condition.
I was getting no help from either and didn't know where next to turn.
I think your G.P. could be instrumental in trying hard , on your behalf to get you an appointment as soon as possible with the second Consultant.
My private Neuro found i was under medicated , and has given me a completely new drug regime. Thank goodness i got help , am really good now. Will talk some more later , am on my way out now .
All the best.
Lorna.
I found when I contacted my PD nurse she would go and ask the consultant and get back to me with an answer or, if the problem warranted it, would bring my appointment forward.
Very many thanks to you for your comments Titan ( I invariably have to go back & remove an i from your name), GG & Lorna. They gave me the courage & motivation to take action.
I have the same problem with the "ia" in Titania. 
Hi Annebernadette,
Good luck,i am sure things will work out for you.The funny thing is with so many E,s in your name,i find myself double checking the spelling as well.Well if the extra i spells titian,then you have unconsciously spotted the Artistic side of me.Now if it spells Tintin ,well i don,t possess a quiff,but have been called worse.
Ray,i love the way you pop up with your witty additions,makes every ones day brighter and puts a smile on my face.
All the best
Titian.
Good luck,i am sure things will work out for you.The funny thing is with so many E,s in your name,i find myself double checking the spelling as well.Well if the extra i spells titian,then you have unconsciously spotted the Artistic side of me.Now if it spells Tintin ,well i don,t possess a quiff,but have been called worse.
Ray,i love the way you pop up with your witty additions,makes every ones day brighter and puts a smile on my face.
All the best
Titian.
Glad to be of service!
Today, Matthew, I'm going to be Orson Welles as Othello.
Have a good day!
Today, Matthew, I'm going to be Orson Welles as Othello.
Have a good day!
As I've mentioned elsewhere, I'm becoming more and more convinced by the day that all these figures about what proportion of patients who are prescribed DAs will develop OCDs to some extent (1%, 14%, 25% etc) are rubbish.
I now believe that the real figure is actuality 100%. It's merely a question of an individual patient's threshold.
Give anyone enough of a DA and they [u]will[/u] develop OCDs.
Thoughts?
Ray.
I now believe that the real figure is actuality 100%. It's merely a question of an individual patient's threshold.
Give anyone enough of a DA and they [u]will[/u] develop OCDs.
Thoughts?
Ray.
Hi Ray,
Having already given an account of my Neurologist visit and thoughts, will now endeavour to give give you an honest answer to your 100% theory.Also,how and why i think i was affected.
Firstly,i believe that there is a 100% risk of developing OCD,s.The percentage figure then follows a sliding scale.A scale based on nil to minimal on the starting or maintenance dose,with the risk percentage rising on dosage increase.I also believe that the maximum dose cap in place helps stop extreme cases of OCD,whilst understanding,as you say,that everyone has a different tolerance threashhold and that this should not be used as a safety net.However it is reassuring to know that limits are now in place.
I was developing OCD tendencies,this sneaked up at a time when i was a low point in my life.At the same time my dosage was upped.I thought at the time that it would not be much more of increase to take me to that maximum mark.
Having been a betting man all my adult life,nothing seemed unusual,i had a few good bets in and started to focus more and more of my time on working on my bets,systems etc.Not losing a lot of money,but certainly increasing.I saw it as a way of getting through the financial low we are in at present.Following a Gallstone op in April,i have never fully recovered.To the point at times of sitting in an empty house in pain,looking around and thinking "what is the point",i think i was and still am very unhappy.The only chink of light in a day of worries and stress was my horse racing.The change was subtle following an increase in dose.I would pick money up and put it back on,chasing more.Come home and think "why did you do that",put the computer on and think those traps look good at that greyhound meeting tonight.If i don,t do them they will win and i will feel more miserable.
I became obsessed with traps 1,2 and 3.If i diden,t do them at certain meetings they would come in.My range and type of bet increased,but i saw it as nothing unusual,i had always bet.Wasen,t loses thousands,but in the back of my mind was starting to become aware,no,more like GUILTY,that i was deceiving myself.I am putting a bet on today,i have gone through all the same procedures,i can feel the buzz and anticipation of what could be.I don,t change meds until Tuesday.The compulsive tendencies have sneaked in under the radar,focusing on my main form of enjoyment,but other people had noticed too.My Grandson thought i had started working in the bookies.
My Wifes account to the Neurologist included the following descriptions
Grouchy,irritable,negative,over-react to everything,sensitive(touchy),defensive.
Time on racing and computer has spiralled,in bookies,watching races,to the extent of neglecting other things.
Other problems and feeling down following post operative pain and slow recovery following Gallbladder removal.Unable to perform certain tasks because of this.
Lethargic,not wanting to do things,especially things i suggest.
My account revolved around the realisation that upping meds which i felt the need for,would be pure folly.I gave an honest account of the general despair in my life,i will spare the details.
I would not say i have OCD.I would say i was showing OCD,tendencies focussed mainly in one area.However it is the knock on effect encroaching on other areas which becomes glaringly obvious to all but myself.
So where does that leave me when quoting statistics.Well,certainly not suffering from OCD,certainly not catastrophic but definitely showing OCD manifestations which left would be damaging.I believe everyone has a little OCD in them without drugs,touching wood for good luck and other superstitions.The more tendencies before DA,s,the more the likelihood of them escalating.
I think i could fall into a new catagory of percentage figures.Those who suffered OCD tendencies but through awareness have managed to avoid the catastrophic results.I recognise that i am fortunate and there are people out there not as clued up.However,following my discussion with my Neurologist,i think things are changing and even those people will become fewer as time passes.We can only guess at figures and the varying sub branches within those statistics.The main thing is that i now believe everybody is 100% at risk.How things are managed and safeguards is another matter.
All the best
Titan
Having already given an account of my Neurologist visit and thoughts, will now endeavour to give give you an honest answer to your 100% theory.Also,how and why i think i was affected.
Firstly,i believe that there is a 100% risk of developing OCD,s.The percentage figure then follows a sliding scale.A scale based on nil to minimal on the starting or maintenance dose,with the risk percentage rising on dosage increase.I also believe that the maximum dose cap in place helps stop extreme cases of OCD,whilst understanding,as you say,that everyone has a different tolerance threashhold and that this should not be used as a safety net.However it is reassuring to know that limits are now in place.
I was developing OCD tendencies,this sneaked up at a time when i was a low point in my life.At the same time my dosage was upped.I thought at the time that it would not be much more of increase to take me to that maximum mark.
Having been a betting man all my adult life,nothing seemed unusual,i had a few good bets in and started to focus more and more of my time on working on my bets,systems etc.Not losing a lot of money,but certainly increasing.I saw it as a way of getting through the financial low we are in at present.Following a Gallstone op in April,i have never fully recovered.To the point at times of sitting in an empty house in pain,looking around and thinking "what is the point",i think i was and still am very unhappy.The only chink of light in a day of worries and stress was my horse racing.The change was subtle following an increase in dose.I would pick money up and put it back on,chasing more.Come home and think "why did you do that",put the computer on and think those traps look good at that greyhound meeting tonight.If i don,t do them they will win and i will feel more miserable.
I became obsessed with traps 1,2 and 3.If i diden,t do them at certain meetings they would come in.My range and type of bet increased,but i saw it as nothing unusual,i had always bet.Wasen,t loses thousands,but in the back of my mind was starting to become aware,no,more like GUILTY,that i was deceiving myself.I am putting a bet on today,i have gone through all the same procedures,i can feel the buzz and anticipation of what could be.I don,t change meds until Tuesday.The compulsive tendencies have sneaked in under the radar,focusing on my main form of enjoyment,but other people had noticed too.My Grandson thought i had started working in the bookies.
My Wifes account to the Neurologist included the following descriptions
Grouchy,irritable,negative,over-react to everything,sensitive(touchy),defensive.
Time on racing and computer has spiralled,in bookies,watching races,to the extent of neglecting other things.
Other problems and feeling down following post operative pain and slow recovery following Gallbladder removal.Unable to perform certain tasks because of this.
Lethargic,not wanting to do things,especially things i suggest.
My account revolved around the realisation that upping meds which i felt the need for,would be pure folly.I gave an honest account of the general despair in my life,i will spare the details.
I would not say i have OCD.I would say i was showing OCD,tendencies focussed mainly in one area.However it is the knock on effect encroaching on other areas which becomes glaringly obvious to all but myself.
So where does that leave me when quoting statistics.Well,certainly not suffering from OCD,certainly not catastrophic but definitely showing OCD manifestations which left would be damaging.I believe everyone has a little OCD in them without drugs,touching wood for good luck and other superstitions.The more tendencies before DA,s,the more the likelihood of them escalating.
I think i could fall into a new catagory of percentage figures.Those who suffered OCD tendencies but through awareness have managed to avoid the catastrophic results.I recognise that i am fortunate and there are people out there not as clued up.However,following my discussion with my Neurologist,i think things are changing and even those people will become fewer as time passes.We can only guess at figures and the varying sub branches within those statistics.The main thing is that i now believe everybody is 100% at risk.How things are managed and safeguards is another matter.
All the best
Titan
Possible, even probable. Just like enough alcohol and you'll get smashed.
Some tolerate it more than others, but we all have a threshold.
Just like everyone has their price, for me that was 50p or a bag of nuts, I've read in the papers some charge £1000+ and don't even blush
Just like my threshold for talking complete and utter rubbish, running off at the mouth, is very low indeed as is my going off the subject completely ...
What was the question?
Some tolerate it more than others, but we all have a threshold.
Just like everyone has their price, for me that was 50p or a bag of nuts, I've read in the papers some charge £1000+ and don't even blush
Just like my threshold for talking complete and utter rubbish, running off at the mouth, is very low indeed as is my going off the subject completely ...
What was the question?
Transferred from poetry thread (re the OCD life)
HOW LOW COULD YOU SINK?
You ponder your problem, you have a good think,
And ask yourslf just how low you could sink.
I'll tell you my friend, a terraced grey slum
Will be yours for the renting from landlord so glum.
In a cold city centre you could find your next stop,
Surrounded by junkies, alcoholics and slop.
Your neighbours have come from all over the globe,
With languages many for your temporal lobe.
You won't have a bank, nor an income worth owt,
But a long line of creditors chase you about.
And though your disease will get daily the worse
You'll get little help as there's no PD nurse.
No medic will venture down your dodgy lane -
The last one who tried got a wrench in his brain.
Mind you, no burglar will break your repose,
As you have no possessions - the bailiff took those.
So take my advice, steer cleer of the bookie -
He'll take every penny, for he is no rookie.
Make sure you no longer can access your cash
Or end up twice daily on gravy and mash.
Ray.
.
HOW LOW COULD YOU SINK?
You ponder your problem, you have a good think,
And ask yourslf just how low you could sink.
I'll tell you my friend, a terraced grey slum
Will be yours for the renting from landlord so glum.
In a cold city centre you could find your next stop,
Surrounded by junkies, alcoholics and slop.
Your neighbours have come from all over the globe,
With languages many for your temporal lobe.
You won't have a bank, nor an income worth owt,
But a long line of creditors chase you about.
And though your disease will get daily the worse
You'll get little help as there's no PD nurse.
No medic will venture down your dodgy lane -
The last one who tried got a wrench in his brain.
Mind you, no burglar will break your repose,
As you have no possessions - the bailiff took those.
So take my advice, steer cleer of the bookie -
He'll take every penny, for he is no rookie.
Make sure you no longer can access your cash
Or end up twice daily on gravy and mash.
Ray.
.
Hi,
Reflecting on present day safeguards available to people on DA,s or about to start on DA,s.
I feel that although there are warnings and maximum dosage limitations.Everyone is still at risk of developing OCD behaviour at various stages,dependant on their susceptibility,lifestyle and awareness.At some stage recognising problems developing and doing something about it is a reality now,more so than in the past.
My experience i feel is a modern day example of the way things are changing for those on DA,s today.Also,how Neurologists should react in preventing further catastrophic OCD cases.There are many other physical side effects of these medications,indeed all drugs have the potential to cause harm.Some people are rendered critically ill by other drugs,even deaths occurring.Many pwp stop DA,s for other reasons,other side effects,water retention,irregular heartbeat,constant sickness or abdominal pain.It is much harder to notice something that slowly creeps up and only becomes apparent when quite literally slapped in your face.
I can understand more clearly now how those who have had catastrophic experiences in the past came to be capable of such extreme behaviour.I can see why it is such an emotive subject,but believe that lessons have been learnt.I feel that today,there is a much greater awareness from all sides which lead to OCD tendencies being noticed at an early stage by either the pwp,their family,or the Neurologist.
I was aware of spending more time devoted to betting on both the greyhounds and the horses.Yet at the same losing all sense of limitation concerning time.I actually think i was in profit during this period,but it was the blinkered importance i devoted to winning money that was the commanding /driving factor.
Having spoken with ALL my family and with careful deliberation i/we have come to a number of conclusions.The main factor/catalyst for the development of potential problems in my case was money.It was not the DA itself.The DA just helped fuel the problem.The DA itself under the maximum controlled limit set now,i think can be managable and adjusted to suit those taking it.Health issues,freeing up more time,the fact i was unhappy,the monthly shortage at present with our income.This shortage i blamed myself for,because i am not working full time.Naturally turning to something i had done for 27 years is not unexpected.The problems i am going through did not create the money troubles,my family all agree.
It is the potential to do so that has been nipped in the bud.I firmly believe that if i had been well off,no health issues other than pd,was happy with myself and my life,then problems may not have developed.However they did and the potential is always there.What is important is that potential catastrophic damage from DA,s can be noticed,i have proved that.I view myself as a modern day example of being confident in managing to control,then finding myself losing control,then finally recognising with help from this forum etc,and regaining control.
I think that both sides of the DA argument can be seen here,i have not had a bet,looked at a newspaper or even felt the desire to for 2 days.I am still on the same dosage until tomorrow.
Conclusion i come to is,financial and personal problems were fuelled by the Mirapexin,the Mirapexin did not cause the OCD development all on its own.
Still milling around thoughts on the issue,and will be posting them.
All the best
TITAN
Reflecting on present day safeguards available to people on DA,s or about to start on DA,s.
I feel that although there are warnings and maximum dosage limitations.Everyone is still at risk of developing OCD behaviour at various stages,dependant on their susceptibility,lifestyle and awareness.At some stage recognising problems developing and doing something about it is a reality now,more so than in the past.
My experience i feel is a modern day example of the way things are changing for those on DA,s today.Also,how Neurologists should react in preventing further catastrophic OCD cases.There are many other physical side effects of these medications,indeed all drugs have the potential to cause harm.Some people are rendered critically ill by other drugs,even deaths occurring.Many pwp stop DA,s for other reasons,other side effects,water retention,irregular heartbeat,constant sickness or abdominal pain.It is much harder to notice something that slowly creeps up and only becomes apparent when quite literally slapped in your face.
I can understand more clearly now how those who have had catastrophic experiences in the past came to be capable of such extreme behaviour.I can see why it is such an emotive subject,but believe that lessons have been learnt.I feel that today,there is a much greater awareness from all sides which lead to OCD tendencies being noticed at an early stage by either the pwp,their family,or the Neurologist.
I was aware of spending more time devoted to betting on both the greyhounds and the horses.Yet at the same losing all sense of limitation concerning time.I actually think i was in profit during this period,but it was the blinkered importance i devoted to winning money that was the commanding /driving factor.
Having spoken with ALL my family and with careful deliberation i/we have come to a number of conclusions.The main factor/catalyst for the development of potential problems in my case was money.It was not the DA itself.The DA just helped fuel the problem.The DA itself under the maximum controlled limit set now,i think can be managable and adjusted to suit those taking it.Health issues,freeing up more time,the fact i was unhappy,the monthly shortage at present with our income.This shortage i blamed myself for,because i am not working full time.Naturally turning to something i had done for 27 years is not unexpected.The problems i am going through did not create the money troubles,my family all agree.
It is the potential to do so that has been nipped in the bud.I firmly believe that if i had been well off,no health issues other than pd,was happy with myself and my life,then problems may not have developed.However they did and the potential is always there.What is important is that potential catastrophic damage from DA,s can be noticed,i have proved that.I view myself as a modern day example of being confident in managing to control,then finding myself losing control,then finally recognising with help from this forum etc,and regaining control.
I think that both sides of the DA argument can be seen here,i have not had a bet,looked at a newspaper or even felt the desire to for 2 days.I am still on the same dosage until tomorrow.
Conclusion i come to is,financial and personal problems were fuelled by the Mirapexin,the Mirapexin did not cause the OCD development all on its own.
Still milling around thoughts on the issue,and will be posting them.
All the best
TITAN
http://www.newharbinger.com/PsychSolve/ImpulseControlDisorders/tabid/132/Default.aspx
I've just read through the above link and found it quite interesting. It's also made me think about how I feel now and how I behave sometimes. The link with depression, anxiety and Parkinson's.
The difference between impulsive/compulsive behaviour caused by a DA as opposed to depression/anxiety ~ when I was on the DA's the behaviour was 24/7. Depression and anxiety seems to bring on impulsive behaviour causing relapses. One can go for days, months before an episode.
What I will say though is when I was on the DA's, I went from one compulsion to another. It started with hypersexuality to writing poetry all day and night, to making greeting cards to painting with oils, water colours and acrylics, to impulse shopping. I didn't need the things I was buying and would make myself feel better by giving them away or hoarding them ~ out of sight, out of mind! That doesn't sound too bad does it? The problem was, that is all my day consisted of. I didn't sleep, hardly ate and often didn't drink. This obviously led to frequent urine infections and other complications.
I want to continue writing but I am tired and I will probably bore you, haha, so I will stop there.
Night night all xx
I've just read through the above link and found it quite interesting. It's also made me think about how I feel now and how I behave sometimes. The link with depression, anxiety and Parkinson's.
The difference between impulsive/compulsive behaviour caused by a DA as opposed to depression/anxiety ~ when I was on the DA's the behaviour was 24/7. Depression and anxiety seems to bring on impulsive behaviour causing relapses. One can go for days, months before an episode.
What I will say though is when I was on the DA's, I went from one compulsion to another. It started with hypersexuality to writing poetry all day and night, to making greeting cards to painting with oils, water colours and acrylics, to impulse shopping. I didn't need the things I was buying and would make myself feel better by giving them away or hoarding them ~ out of sight, out of mind! That doesn't sound too bad does it? The problem was, that is all my day consisted of. I didn't sleep, hardly ate and often didn't drink. This obviously led to frequent urine infections and other complications.
I want to continue writing but I am tired and I will probably bore you, haha, so I will stop there.
Night night all xx
Night!
Hi Ray,
I am firmly in agreement with your comment "give anyone a DA and they will develope OCD". We all get it in some form but to recognise it and talk to family about it reduces the risks.
I won't write what mine is if you want to discuss send a message.
Tulip
I am firmly in agreement with your comment "give anyone a DA and they will develope OCD". We all get it in some form but to recognise it and talk to family about it reduces the risks.
I won't write what mine is if you want to discuss send a message.
Tulip
Hi Tulip. Your message facility seems to be disabled at the moment. Can you enable it, or message me instead?
Ray.
Ray.
Aye, it's a sair fecht.
My doctor doesn't believe in home visits. It's all guesswork by phone.
I'm going to see about getting a video link for my nipsy.
There isn't anything wrong with it, I just want to show him what I think of his service without leaving my house.
My doctor doesn't believe in home visits. It's all guesswork by phone.
I'm going to see about getting a video link for my nipsy.
There isn't anything wrong with it, I just want to show him what I think of his service without leaving my house.