Hi !
I have read about ICB and have taken Mirapexin for 5 years now (currently 2.15 slow release.)
I dont think I have ICB but where is the line. Whilst not having had any headline making behaviours; I am not the same person as I was before DA.
I like everything in its right place
I increasing surf the internet
I spread time checking my finances and looking towards my future financial security
I buy multiple pairs of shoes in the sales
All these are becoming more prevalent, is this the start of ICB and I should act now or am I just changing normally with time ?
Is ICB a step change in behaviour or a gradual change ?
Cheers !
Westby
“When does normal behaviour become impulsive & compulsive?” When our behaviour gets noticed by us or those close to us. But this is a complicated business as it’s all too easy to blame the medication thereby letting that old villain, Parky, off the hook.
Having said that, I could have asked for a double dose of Mirapexin at my last visit to the Neuro in November but I found myself saying that everything was fine and that I would like to stick with the original dose of 1.05 mg per day prescribed nearly two years ago. The REAL truth for me is that Parky is now in the lead and the meds are trailing behind.
My reason for staying under-prescribed is that – according to this forum – the DA side effects are worse than Parky itself, so I’ll err on the side of caution.
Am I over-reacting? I only wish I knew the answer to that.
Having said that, I could have asked for a double dose of Mirapexin at my last visit to the Neuro in November but I found myself saying that everything was fine and that I would like to stick with the original dose of 1.05 mg per day prescribed nearly two years ago. The REAL truth for me is that Parky is now in the lead and the meds are trailing behind.
My reason for staying under-prescribed is that – according to this forum – the DA side effects are worse than Parky itself, so I’ll err on the side of caution.
Am I over-reacting? I only wish I knew the answer to that.
Lily,
I have the same concern; the drugs are not smarties. And yes my character has changed but there again it would as you get older. 10 years ago I wa totally against this type of forum, now I'm happy to type this.
But is this the first signs. Just as we all had before diagnosis ?
Westby
I have the same concern; the drugs are not smarties. And yes my character has changed but there again it would as you get older. 10 years ago I wa totally against this type of forum, now I'm happy to type this.
But is this the first signs. Just as we all had before diagnosis ?
Westby
Hi,
Advantages v disadvantages
Parkinsons itself v medication
One persons personality v another's
One persons personal circumstances v another's
One persons emotional and psychological make-up v another's
The list is endless.
If you have something you enjoy and are feeling desperately down,coupled with the pd meds in the never ending combinations they come in.Add to that the fact that you may have low self worth because pd has thrown into the equation a definite dead end to anything meaningful and constructive.Then those moments of pleasure are sought after without seeking,are realised without caring,are regretted without fully regretting.
I spent SEVEN hours at the bookies yesterday.I did not drink or eat during this time.I was quite exhausted.Constant bets.Was I happy,yes,but maybe because I won.I was like this at times before DA's,but the need to bet cleverly with constant small stakes for a big win is something I look forward to each day.Is it bad to feel happy,doing things I really enjoy.I was £100 in profit yesterday.We all have limits,okay,that may seem like over the top to many,but boredom is terrible,the drudge of every day life is relentless.I would say,that I harness any obsessive/compulsive behaviour and turn it to my advantage.
In a few years time,who knows knows how things will be.Constantly worrying about OCD's is OCD in itself.Why struggle by,putting up with symptoms and denying those things you enjoy through fear.
There is a line that everyone can draw,but is very vague.If allowing others to draw that line for you however is pure folly,breeds resentment and unhappiness and can do more to break up relationships than OCD itself.I would say be aware of the OCD,embrace it for what it is,don,t deny yourself too much and decide where your own line is.
Just scraping the tip of a very large ice burg again.
Titan
Advantages v disadvantages
Parkinsons itself v medication
One persons personality v another's
One persons personal circumstances v another's
One persons emotional and psychological make-up v another's
The list is endless.
If you have something you enjoy and are feeling desperately down,coupled with the pd meds in the never ending combinations they come in.Add to that the fact that you may have low self worth because pd has thrown into the equation a definite dead end to anything meaningful and constructive.Then those moments of pleasure are sought after without seeking,are realised without caring,are regretted without fully regretting.
I spent SEVEN hours at the bookies yesterday.I did not drink or eat during this time.I was quite exhausted.Constant bets.Was I happy,yes,but maybe because I won.I was like this at times before DA's,but the need to bet cleverly with constant small stakes for a big win is something I look forward to each day.Is it bad to feel happy,doing things I really enjoy.I was £100 in profit yesterday.We all have limits,okay,that may seem like over the top to many,but boredom is terrible,the drudge of every day life is relentless.I would say,that I harness any obsessive/compulsive behaviour and turn it to my advantage.
In a few years time,who knows knows how things will be.Constantly worrying about OCD's is OCD in itself.Why struggle by,putting up with symptoms and denying those things you enjoy through fear.
There is a line that everyone can draw,but is very vague.If allowing others to draw that line for you however is pure folly,breeds resentment and unhappiness and can do more to break up relationships than OCD itself.I would say be aware of the OCD,embrace it for what it is,don,t deny yourself too much and decide where your own line is.
Just scraping the tip of a very large ice burg again.
Titan
hi,steppin over the line i feel is quite difficult to judge,for instance with me,when the sales came on after xmas i started to spend like worse than ever,in the past ive always been good with money,when my dad passed and i got left a large amount it was looked after very sensibly,i bout things i needed and things i could see would help me in the futre.but latley i spend and spend,my cards have been took off me which frustrates me very much,and i carnt go no were with out some one with me,so makes it harder to spend now.last nite i wonted to pack my bags anfd get out of here so bad ,fell apart but no one would take me,and daughter would not look after me 2 dogs,so i got so mad ,i feel traped,and feel like im bein treated like a kid
but ino in my self im spendin money alot and i no i like it so much i carnt stop when im able to do it.but my daughter has stepped in and my freind as well and if it wernt for them goodness nows wot i be doin today,i even got to the stage last nite of horrid thoughts in my head,which scares me.so i guess wot im sayin is,if you dont reconize you have aprob,i say when you on sas drugs is tell close ones and freinds around u,and they to look out for signs ,and thats the only way i would see the steppin line
but ino in my self im spendin money alot and i no i like it so much i carnt stop when im able to do it.but my daughter has stepped in and my freind as well and if it wernt for them goodness nows wot i be doin today,i even got to the stage last nite of horrid thoughts in my head,which scares me.so i guess wot im sayin is,if you dont reconize you have aprob,i say when you on sas drugs is tell close ones and freinds around u,and they to look out for signs ,and thats the only way i would see the steppin line
Actually "stepping over the big line" could be a series of smaller lines?
Firstly everyone will have a different starting point in terms of their risk to ICB's. Then a lot depends on your dosage levels, this is very important. LOW dose generally equals less risk, HIGH dose equals far greater risk.
Furthermore while your busy looking out for that "big line" ensuring you don't cross it, you could find yourself crossing several smaller and more difficult to see lines, over a longer time period. For example someone going straight on a high dose may cross that "big line" quickly, whereas someone who is gradually increasing the dose over months or even years, may eventually cross the "big line" if people around them are not vigilant!
One other important factor, someone crossing over from being a occasional gambler to a compulsive gambler then in to a pathological gambler, has very different outcomes. I have yet to meet a pathological gambler who wins. The same logic applies to hypersexulity, eg developing a high sex drive while taking DA's is far less damaging than developing an illegal sex drive. Going from highly sexed to illegal sex may involve you crossing over one big line or several smaller ones over time!!!
Firstly everyone will have a different starting point in terms of their risk to ICB's. Then a lot depends on your dosage levels, this is very important. LOW dose generally equals less risk, HIGH dose equals far greater risk.
Furthermore while your busy looking out for that "big line" ensuring you don't cross it, you could find yourself crossing several smaller and more difficult to see lines, over a longer time period. For example someone going straight on a high dose may cross that "big line" quickly, whereas someone who is gradually increasing the dose over months or even years, may eventually cross the "big line" if people around them are not vigilant!
One other important factor, someone crossing over from being a occasional gambler to a compulsive gambler then in to a pathological gambler, has very different outcomes. I have yet to meet a pathological gambler who wins. The same logic applies to hypersexulity, eg developing a high sex drive while taking DA's is far less damaging than developing an illegal sex drive. Going from highly sexed to illegal sex may involve you crossing over one big line or several smaller ones over time!!!
Blueeyes47
I would just like to say that if your post is an example of the calm, thoughtful, accurate discussion that this subject deserves, then its a vast improvement. You are obviously an excellent choice for this role (no I'm not about to ask for a loan, and no disrespect to anyone else).
Would you agree in Westby's case that if nothing serious (other than a slight excess in foootwear) has occurred in 5 years that there is unlikely to be a problem (given a stable dosage)? or does it occasionally come on after a few years?
I would just like to say that if your post is an example of the calm, thoughtful, accurate discussion that this subject deserves, then its a vast improvement. You are obviously an excellent choice for this role (no I'm not about to ask for a loan, and no disrespect to anyone else).
Would you agree in Westby's case that if nothing serious (other than a slight excess in foootwear) has occurred in 5 years that there is unlikely to be a problem (given a stable dosage)? or does it occasionally come on after a few years?
This has been a whole thing to battle with for me - whether to accept my neuro's offer of DAs or whether to struggle on taking the same meds my grandmother took before me (with the exception of Azilect). I tend to say that I will stay with this for the time being, but some people disagree and say that if your quality of life can be improved now (like walking, for example) then why ever would you not take the chance? Because later might be too late. Personally, I lie awake at night worrying about this (well, and the usual myriad of other stuff too).
Hi,
It,s all Noodles,it all is irrelevant.it's all a huge Ants nest,it's impossible,I am fed up with it.Everyone is after their pound of flesh,feathering their own nest.Your own integrity is all you have,even then it's wobbly.Integrity is a dying art.To hold out for as long as you can,that,s all you can do.
Don,t phone the help line,in the early hours like myself though,the only time ever.In direst need,everyone is asleep,when we are all awake.
say no more
Titan
It,s all Noodles,it all is irrelevant.it's all a huge Ants nest,it's impossible,I am fed up with it.Everyone is after their pound of flesh,feathering their own nest.Your own integrity is all you have,even then it's wobbly.Integrity is a dying art.To hold out for as long as you can,that,s all you can do.
Don,t phone the help line,in the early hours like myself though,the only time ever.In direst need,everyone is asleep,when we are all awake.
say no more
Titan
Have answered elsewhere Titan.
But in the darkest hours you can always phone The Samaritans.
There is always someone there and they will always walk with you even if they can't change anything and help you decide what you can do to feel more able to cope.
GG
X
But in the darkest hours you can always phone The Samaritans.
There is always someone there and they will always walk with you even if they can't change anything and help you decide what you can do to feel more able to cope.
GG
X
Hi Titan,
I've had a chat with the helpline team. If you give us a call on 0808 800 0303, we'll see if we can put you through to a nurse as soon as possible.
goldengirl is also right. If you feel you need support during the times the helpline is closed, you can always call Samaritans which is open 24 hours a day at 08457 90 90 90 or Gamcare which is open until midnight at 0808 8020133.
I hope this helps,
Ezinda
I've had a chat with the helpline team. If you give us a call on 0808 800 0303, we'll see if we can put you through to a nurse as soon as possible.
goldengirl is also right. If you feel you need support during the times the helpline is closed, you can always call Samaritans which is open 24 hours a day at 08457 90 90 90 or Gamcare which is open until midnight at 0808 8020133.
I hope this helps,
Ezinda
In my humble opinion, if someone enjoys activities such as shopping, cleaning golfing, gambling, partying, drinking or any other legal activities which give them pleasure, then there is no problem. Until it causes themselves or others concern. Be it financial. social, or psychological., or just a feeling that "I should not be doing this" That, I believe is when the "line has been crossed" And of course it may have absoutely nothing to do with pd or pd medication. If you feel it is a factor, then the obvious action to take is to consult your GP/neurologist/pd nurse , or even your nearest and dearest?
Keep talking, Titan, whether it’s to your GP, your Neuro, the Helpline, the Samaritans or us. For the sake of your family, you [u]must[/u] do what is right.
Hi Titan
I have provided a link to the National problem gambling clinic. It is run by the NHS and they provide one to one therapy including CBT (cognitive behavioural therapy. They help you deal with the underlying reasons for gambling eg the drugs and will also provide support for family members affected by your gambling. You will need a referral to get access to the clinic from your GP or Neuro.
I urge you to pursue this suggestion and change course quickly as i fear currently for your health and well being if you carry on gambling.
Regards
bluey
http://www.cnwl.nhs.uk/gambling_whatservicesareprovided.html
I have provided a link to the National problem gambling clinic. It is run by the NHS and they provide one to one therapy including CBT (cognitive behavioural therapy. They help you deal with the underlying reasons for gambling eg the drugs and will also provide support for family members affected by your gambling. You will need a referral to get access to the clinic from your GP or Neuro.
I urge you to pursue this suggestion and change course quickly as i fear currently for your health and well being if you carry on gambling.
Regards
bluey
http://www.cnwl.nhs.uk/gambling_whatservicesareprovided.html
Hello Titan, as you know we don't live very far from each other 'across the fields' I think one of your poems said!!
I just wondered if you might like to meet for a coffee as you seem to be feeling pretty low? I too have been where you are now but with support came through, perhaps we might have a blooming good moan together. It might also keep you out of the betting shop for an hour.LOL
Please think about it, I know that you've recently lost your car but I could come across to you? Let me know by private message if you want to meet up.
glenchass
I just wondered if you might like to meet for a coffee as you seem to be feeling pretty low? I too have been where you are now but with support came through, perhaps we might have a blooming good moan together. It might also keep you out of the betting shop for an hour.LOL
Please think about it, I know that you've recently lost your car but I could come across to you? Let me know by private message if you want to meet up.
glenchass
Hello Titan please see my post on the impulsive compulsive behaviour forum I was never a gambler or a shopper and yet I have just realised that is what I have become I had a very high risk job that involved me working on my own in very dangerous situations on occasion and I had to retire suddenly due to Parkinson's I have always been level headed and sensible this I believe can only be the meds take stock of what your doing keep a diary and talk to your doc earlier rather than later it's taken me two years to realise what's happening best of luck
My heart is racing after reading the previous posts all are familiar in my case the first OCB problm was hypersexulity back in 2000 2004 change of drugs fixed it but since then compulsive buying and not jus t small things, a car kitchen xtension new suits but mainly die cast 1/50 scale models thousands of them I just cant resist but im happy buying them im
going as shutting dow OTANn b f n
Sexual compulsions today are very common even without PD,So is gambling and drugs and booze,All the vices are there 24/7.
I read awhile ago about a PWP who channelled her energy into positive pastimes.She volunteers and fund raises for PD,So far she has her energy under control.
I myself have temptations .For quite awhile now I have made a habit of staying positive,I do more volunteer work.I do more family visiting I keep up our home .Maybe its because i don't have time to sit and relapse and fall back into temptation,lol
Everything in a mediocre way.Im not looking to change the world anymore.We have to take care of ourselves the best we can,Morning stretching and maybe walking.
Personally i tried ropenerol and it gave me a fuzzy mind weak will.Im much better off bu tif i didn't rechannel my time and eenergy I still would have problems with self control
Dr.Abraham Low founder of Recovery inc. once said there is no uncontrollable impulse,There are plenty of uncontrolled impulses.IF one makes a habit of one of the vices then what he is fighting is a habit.he also said bad habits come easy and good habits take alot of effort.
Hi,
God!reading this section again takes me back.Feel like reading through the archives now.May do another time.
Take care
Titan