hi Leyther
While my brain was flooded with Dopamine, it was all about the trill and not the gambling. The same with sex, in fact just about anything which involved risk taking. The greater the risk the more of a thrill i got. I lost all connection with reality and went from being someone who was grounded and careful into someone who was out of control. Now thanks to my uncle and his work dealing with cocaine and other drug addictions, i better understand how dopamine can impact the pleasure and reward pathways within the brain.
No i was not conscious or aware of what i was doing while taking the DA's. Since my experience i have spent some time observing class A drug addicts and talking to experts on the subject of how these drugs can hijack the brain. DA's can hijack the brain much in the same way if allowed too. I remember being shocked when my uncle told me that,in the last few years he helped several addicts who became hooked on DA's. They did not suffer from PD, they just brought the drug via the Internet to get high.
I am lucky with my neuro, he is very supportive. He fully accepts their is a link between DA's and pathological behaviour. Since 2008 he now only prescribes DA'S to new patients and is carrying out his own risk assessment. Furthermore he insists another family member is present and also aware of the risks. Unfortunately he also tells me, he has colleagues who still don't advise new patients of the risks or are in denial.
regards
bluey
I was as at a stage where my behaviour was getting ridiculous.
I was punding the night away building and dismantling my pc. Next day i'd be falling asleep at the wheel.
I was lying and feeling superior. I was out smarting everybody. I told a client I'd wet myself while driving out to see him because I wanted to go fishing. While fishing I'd resolved to comit suicide when I caught my next fish.
I was treating my wife appallingly. She has been brilliant throughout and I was being a complete (their isn't a word I can use that wouldn't be censored by the modirator). I would disappear for days on end, mobile off. Or I'd tell her I was at a clients, not knowing the client had been on the phone looking for me.
I`n amongst all the this and the rest ( I've spilled my guts else in this forum ) there was periods each day of deep depression, I'd be behaving like a complete selfish bottom and would sob like a skelpt baby. I'd be inconsolable, it just hurt so much, then as soon as it started I's straighten my face and go back to being as hard hearted, abusive idiot.
I started to take myself off my medication to see if I was getting any better or was I getting physicaly worse. When I did this I would start to feel I wasn't me. I'd think of my late father-in-law who had been given mood changing drugs.
I asked at my next drugs reveiw whether I was shopping too much, buying things I didn't need.
I lied and said that I was buying hundreds of computer games that i never had any intentions of playing.
I was whipped off the DA's there and then and then had to wait two weekd before being given levadopa.
Before the DA's
I was husband of the year for 25 years. We had just got remarried. My wife was the centre of my universe.
I had never gambled before. I would go to the bookies to put a bet on the grand national, maybe if my wife got a tip off her friends husband.
I was of the opinion that I only ever got a 1 in 40 chance of getting a 50/50 right.
I was good at maths. I understood that gambling was a mugs game.
On DA's
I was told that some people on DA's started Online Poker. I took this as a good idea, rather than a warning.
If I won big I'd feel sorry for my victim and set out to give them their money back. If I lost I'd be a bit miffed that they would disapper.
I built and installed installed installed PC's day in day out for a living for 20+ years. There was no reason for me to stay up all night rebuilding a perfectly good PC.
I used my life savings to buy and sell cars, boats, always at a loss. I would build servers for clients and then do a disappearing act.
I looked after the cash, paid the bills etc.
My wife looked/looks after her disabled mother 24/7. I was using our mortgage money, my disabled mother-in-laws mortgage money, money tha should have gone to life insurance policies/ endowments. Oh the endowment on the house got cashed as well. The house was also remortgaged to the hilt to release equity.
I blew the lot.
My wife and mother-in-law were getting visits from the mortgage company she found all the hidden mail. I'd say I'll sort it. She thought she was going crazy.
Since coming off DA's I was back to thnking and acting like me. The carnage I was looking at is still to be fixed and will take many more years.
My wife loves me and understands whats gone on thanks to others who have shared their experience and Parkinson's UK literature and cases in the press and the poor couple on This Morning a few years ago. Although I still get funny looks. I keep my phone with me and dont miss a call. I no longer hold the bank card.
If my wife gets a tip for the national, I'll put it on. I'm back to having no interest in fishing. Cant afford golf.
Havent had the need or inclanation to build a PC.
I feel robbed of money and what were the last physically good years of my life. So if I get peaved when people who poo poo the shared experience of me and others, maybe you will understand. There are others who don't and never will get it. They will find "will power" should have squeezed in there somewhere. Or why didn't you see? Or some excuse why its my fault and how it would never happen to them ... I've let THEM into my head again. There is a valid reason. I see there views as ignorant, insulting and downright dangerous.
Why did I go loopy and others don't, and if your about to go on them, why you won't go down the same path as I and other did.
I wasn't warned at the beginning, by the time I was my thinking was all to hell.
My wife was unaware of any warnings at all. I, with my skewed thinking, was handling everything just fine.
I was allowed to rack my meds to the max without question. You have to build the dose up, no sooner had this been done I was up to the next level. I was still 'working' I needed to feel my best to perform my duties/hide my condition. Turned out I got sacked from everyone I ever did work for anyway.
You've read this and from others who HAVE KNOWLEDGE AND TRUE UNDERSTANDING, if you do feel side effects, regardless of 1 in 2/4/2000, you or your nearest and dearest will have understanding. You will know you can get your meds changed and you will feel good to go again.
Enjoy your life, have hope for the future - were no differnt form anyone else alive in that regard. I've had PD for 9 years and will continue to have it until I'm cured or not, for the most part it lives in the basement of my mind.
I'm concentrating on making my wife as happy as I can, like I've always done. It's not easy, but then it never was ... but that's women
. Keep a sense of humour and a song in your heart.
I sometimes lose faith. Where was my soul, spirit, my God when all this was going on.
There was a moment in the madness, I'd resolved to slap my good lady if she kept badgering me. If there is one thing I abhor it's violence against women. Cowardice in the extreme. I'd messed up again, she got angry and started shouting why this and why that.
I raised my hand to backhand her across her face. I felt nothing, hate/love, nothing. Just a way to shut her up.
I didn't do it. I don't know why, maybe my soul, spirit, my God. My wife will never forget that gesture and it gives me hope as much as it will haunt me all my days.
DA's were great at treating my symptoms, however I suffered the consequence of too much , too fast , no warning and therefor no-one looking out for me.
I was punding the night away building and dismantling my pc. Next day i'd be falling asleep at the wheel.
I was lying and feeling superior. I was out smarting everybody. I told a client I'd wet myself while driving out to see him because I wanted to go fishing. While fishing I'd resolved to comit suicide when I caught my next fish.
I was treating my wife appallingly. She has been brilliant throughout and I was being a complete (their isn't a word I can use that wouldn't be censored by the modirator). I would disappear for days on end, mobile off. Or I'd tell her I was at a clients, not knowing the client had been on the phone looking for me.
I`n amongst all the this and the rest ( I've spilled my guts else in this forum ) there was periods each day of deep depression, I'd be behaving like a complete selfish bottom and would sob like a skelpt baby. I'd be inconsolable, it just hurt so much, then as soon as it started I's straighten my face and go back to being as hard hearted, abusive idiot.
I started to take myself off my medication to see if I was getting any better or was I getting physicaly worse. When I did this I would start to feel I wasn't me. I'd think of my late father-in-law who had been given mood changing drugs.
I asked at my next drugs reveiw whether I was shopping too much, buying things I didn't need.
I lied and said that I was buying hundreds of computer games that i never had any intentions of playing.
I was whipped off the DA's there and then and then had to wait two weekd before being given levadopa.
Before the DA's
I was husband of the year for 25 years. We had just got remarried. My wife was the centre of my universe.
I had never gambled before. I would go to the bookies to put a bet on the grand national, maybe if my wife got a tip off her friends husband.
I was of the opinion that I only ever got a 1 in 40 chance of getting a 50/50 right.
I was good at maths. I understood that gambling was a mugs game.
On DA's
I was told that some people on DA's started Online Poker. I took this as a good idea, rather than a warning.
If I won big I'd feel sorry for my victim and set out to give them their money back. If I lost I'd be a bit miffed that they would disapper.
I built and installed installed installed PC's day in day out for a living for 20+ years. There was no reason for me to stay up all night rebuilding a perfectly good PC.
I used my life savings to buy and sell cars, boats, always at a loss. I would build servers for clients and then do a disappearing act.
I looked after the cash, paid the bills etc.
My wife looked/looks after her disabled mother 24/7. I was using our mortgage money, my disabled mother-in-laws mortgage money, money tha should have gone to life insurance policies/ endowments. Oh the endowment on the house got cashed as well. The house was also remortgaged to the hilt to release equity.
I blew the lot.
My wife and mother-in-law were getting visits from the mortgage company she found all the hidden mail. I'd say I'll sort it. She thought she was going crazy.
Since coming off DA's I was back to thnking and acting like me. The carnage I was looking at is still to be fixed and will take many more years.
My wife loves me and understands whats gone on thanks to others who have shared their experience and Parkinson's UK literature and cases in the press and the poor couple on This Morning a few years ago. Although I still get funny looks. I keep my phone with me and dont miss a call. I no longer hold the bank card.
If my wife gets a tip for the national, I'll put it on. I'm back to having no interest in fishing. Cant afford golf.
Havent had the need or inclanation to build a PC.
I feel robbed of money and what were the last physically good years of my life. So if I get peaved when people who poo poo the shared experience of me and others, maybe you will understand. There are others who don't and never will get it. They will find "will power" should have squeezed in there somewhere. Or why didn't you see? Or some excuse why its my fault and how it would never happen to them ... I've let THEM into my head again. There is a valid reason. I see there views as ignorant, insulting and downright dangerous.
Why did I go loopy and others don't, and if your about to go on them, why you won't go down the same path as I and other did.
I wasn't warned at the beginning, by the time I was my thinking was all to hell.
My wife was unaware of any warnings at all. I, with my skewed thinking, was handling everything just fine.
I was allowed to rack my meds to the max without question. You have to build the dose up, no sooner had this been done I was up to the next level. I was still 'working' I needed to feel my best to perform my duties/hide my condition. Turned out I got sacked from everyone I ever did work for anyway.
You've read this and from others who HAVE KNOWLEDGE AND TRUE UNDERSTANDING, if you do feel side effects, regardless of 1 in 2/4/2000, you or your nearest and dearest will have understanding. You will know you can get your meds changed and you will feel good to go again.
Enjoy your life, have hope for the future - were no differnt form anyone else alive in that regard. I've had PD for 9 years and will continue to have it until I'm cured or not, for the most part it lives in the basement of my mind.
I'm concentrating on making my wife as happy as I can, like I've always done. It's not easy, but then it never was ... but that's women
. Keep a sense of humour and a song in your heart.I sometimes lose faith. Where was my soul, spirit, my God when all this was going on.
There was a moment in the madness, I'd resolved to slap my good lady if she kept badgering me. If there is one thing I abhor it's violence against women. Cowardice in the extreme. I'd messed up again, she got angry and started shouting why this and why that.
I raised my hand to backhand her across her face. I felt nothing, hate/love, nothing. Just a way to shut her up.
I didn't do it. I don't know why, maybe my soul, spirit, my God. My wife will never forget that gesture and it gives me hope as much as it will haunt me all my days.
DA's were great at treating my symptoms, however I suffered the consequence of too much , too fast , no warning and therefor no-one looking out for me.
To Blue-eyes , Eck and others who have shared their stories again.
It is such a comfort to read about your experiences and understand so much better what my husband went through.
So much of it echoes his struggling attempts to put in words the terrifying compulsions and lack of control that he faced.
I have told our story before but feel, although it is terribly painful, a bank of experiences may help those searching for information to make sense of their own fears.
He has had Parkinson's for 11 years and took Ropinirole from the beginning.
No warnings in the packet then and none from the neurologist.
For the last 3 years he was prescribed 36 mg daily of Requip XL, the 1 a day version of Ropinirole.
We now know that it was 50% higher than the tested maximum.
He began disappearing for long periods of time.
He said he had become addicted to playing golf, visiting the Health club and had begun falling asleep in car parks.Money was missing from bank accounts.
We decided he had the beginning of dementia and tried to get him to seek medical help but he refused. We muddled on as he became verbally aggressive when challenged and became hyperactive, up in the night for long perids of time.
He went out almost every day and evening.
Eventually,after 3 years of this, we discovered through letters from financial institutions that he had plundered our savings, given Ā£30,000 to a young Malasian con-woman, put Ā£70,000 in a bank account based at her address,given her the cash card and pin number, found a flat to go and live in to spend more time with her and devote to other (now admitted) long-standing compulsions, pornography and peeping tom activities.
The neurologist saw him immediately when we uncovered this (we always saw him as private petients) and insisted he was an old man fooled by a pretty young girl and the medication had played no part in influencing his behaviour.
So he stayed on it.Life for a month consisted of terrible rows, I was living in pyjamas,chain smoking aand not eating.My husband continued life as normal.
Our GP said he had to accept the neurologist's view and couldn't help.
Eventually the Parkinson's nurse made contact and told us it was the medication.She told me to find the Parkinson's web-site and type in "compulsive behaviour".
Our GP agreed to supervise a withdrawal and I found the Forum and Ray rushed to our side.
From him and other wondwerful people we learned what had happened to us was part of a pattern.
The neurologist finally agreed it was the DAs when shown all the print-outs I had collected from a variety of internet sites and prescribed Sinemet.
The withdrawal was horrific.The "wash-out" period is 8 to 12 weeks according to the Parkinson's nurse, after the last DA tablet.
My husband became depressed and suicidal and could hardly walk. As his mind cleared,the enormity of the devastation he had caused made him want to end his life.
He was admitted to hospital and spent a month under the care of a consultant psychiatrist and neurologist.
He is now home and we are being counselled weekly by a neuropsychologist and a psychiatric nurse each.
Everything other sufferers have written he has also said.
The thrill came from the risk-taking,he had no idea the DAs were affecting him.
He felt no moral responsibility for his actions. He didn't care about what this would do to his family.Consequences didn't concern him. He lied and deceived with ease and without compunction.Part of the euphoria was in getting away with it all.
We have been together since we were teenagers, almost 50 years ago.We have 2 lovely children and 5 grandchildren.
My husband was a wonderful partner,father and grandad.He was kind,generous and loving.He is 68.
The betrayal and loss of trust is so hard to bear and it is so hard to rebuild our lives.
This forum has provided a literal life-line.To those who don't understand what these drugs can do to at least 1 in 4 patients...I hope that you never find out but please don't insult us by saying that will-power could have prevented these tragedies.Only honesty from the drug companies, adequate warnings , involvement with family or friends.and careful monitoring by GPs and consultants will do that.
My love to all involved in the fight to recover.X
It is such a comfort to read about your experiences and understand so much better what my husband went through.
So much of it echoes his struggling attempts to put in words the terrifying compulsions and lack of control that he faced.
I have told our story before but feel, although it is terribly painful, a bank of experiences may help those searching for information to make sense of their own fears.
He has had Parkinson's for 11 years and took Ropinirole from the beginning.
No warnings in the packet then and none from the neurologist.
For the last 3 years he was prescribed 36 mg daily of Requip XL, the 1 a day version of Ropinirole.
We now know that it was 50% higher than the tested maximum.
He began disappearing for long periods of time.
He said he had become addicted to playing golf, visiting the Health club and had begun falling asleep in car parks.Money was missing from bank accounts.
We decided he had the beginning of dementia and tried to get him to seek medical help but he refused. We muddled on as he became verbally aggressive when challenged and became hyperactive, up in the night for long perids of time.
He went out almost every day and evening.
Eventually,after 3 years of this, we discovered through letters from financial institutions that he had plundered our savings, given Ā£30,000 to a young Malasian con-woman, put Ā£70,000 in a bank account based at her address,given her the cash card and pin number, found a flat to go and live in to spend more time with her and devote to other (now admitted) long-standing compulsions, pornography and peeping tom activities.
The neurologist saw him immediately when we uncovered this (we always saw him as private petients) and insisted he was an old man fooled by a pretty young girl and the medication had played no part in influencing his behaviour.
So he stayed on it.Life for a month consisted of terrible rows, I was living in pyjamas,chain smoking aand not eating.My husband continued life as normal.
Our GP said he had to accept the neurologist's view and couldn't help.
Eventually the Parkinson's nurse made contact and told us it was the medication.She told me to find the Parkinson's web-site and type in "compulsive behaviour".
Our GP agreed to supervise a withdrawal and I found the Forum and Ray rushed to our side.
From him and other wondwerful people we learned what had happened to us was part of a pattern.
The neurologist finally agreed it was the DAs when shown all the print-outs I had collected from a variety of internet sites and prescribed Sinemet.
The withdrawal was horrific.The "wash-out" period is 8 to 12 weeks according to the Parkinson's nurse, after the last DA tablet.
My husband became depressed and suicidal and could hardly walk. As his mind cleared,the enormity of the devastation he had caused made him want to end his life.
He was admitted to hospital and spent a month under the care of a consultant psychiatrist and neurologist.
He is now home and we are being counselled weekly by a neuropsychologist and a psychiatric nurse each.
Everything other sufferers have written he has also said.
The thrill came from the risk-taking,he had no idea the DAs were affecting him.
He felt no moral responsibility for his actions. He didn't care about what this would do to his family.Consequences didn't concern him. He lied and deceived with ease and without compunction.Part of the euphoria was in getting away with it all.
We have been together since we were teenagers, almost 50 years ago.We have 2 lovely children and 5 grandchildren.
My husband was a wonderful partner,father and grandad.He was kind,generous and loving.He is 68.
The betrayal and loss of trust is so hard to bear and it is so hard to rebuild our lives.
This forum has provided a literal life-line.To those who don't understand what these drugs can do to at least 1 in 4 patients...I hope that you never find out but please don't insult us by saying that will-power could have prevented these tragedies.Only honesty from the drug companies, adequate warnings , involvement with family or friends.and careful monitoring by GPs and consultants will do that.
My love to all involved in the fight to recover.X
Hi G.G.
Thank you for documenting your story, for others who may not know the detail. I'm sure anyone reading your words can plainly see that your husband was over medicated for 3years, with Ropinerole XL.
The Neurologist was gravely at fault , i don't think anyone would dispute that fact. You were let down. In these circumstances , your husband was so in the grips of the resulting effects of too much medication, that he was barely functioning.
Your story , indeed serves as a dire warning of what can go wrong , if people taking any medication , for any medical condition really , are mis-informed or are ignorant about how to manage and monitor powerful drugs.
In my nursing career, I remember seeing patients who had major organ damage , and even failure , because of not being aware of recommended dosage levels and side effects . It's not just in the Parkinsons world, sadly.
Most Specialists do not fail their patients. But we ourselves must take responsibility for knowing as much as possible about the medication we take , and not be afraid to ask as many questions as we need to.
I still work in the N.h.S. and am shocked and amazed by how little some people know about their conditions , the drugs they are prescribed , and the plan or progression/ regression of their illnesses.
They sometimes ask me difficult questions, which I'm not qualified or allowed to answer, regarding their drugs and treatment. I cannot answer , of course , and always encourage them to ask the person treating them for these answers. As we all need to do ,in this , our Parkinsons situation.
Drs will answer questions . Their dilemma often is trying to ascertain how much the patient actually wants to be told. Many people simply do not want this information.
The Drs can do much damage equally, by giving information where it's not been asked for.
Best of luck with your husband' continued recovery.
Thank you for documenting your story, for others who may not know the detail. I'm sure anyone reading your words can plainly see that your husband was over medicated for 3years, with Ropinerole XL.
The Neurologist was gravely at fault , i don't think anyone would dispute that fact. You were let down. In these circumstances , your husband was so in the grips of the resulting effects of too much medication, that he was barely functioning.
Your story , indeed serves as a dire warning of what can go wrong , if people taking any medication , for any medical condition really , are mis-informed or are ignorant about how to manage and monitor powerful drugs.
In my nursing career, I remember seeing patients who had major organ damage , and even failure , because of not being aware of recommended dosage levels and side effects . It's not just in the Parkinsons world, sadly.
Most Specialists do not fail their patients. But we ourselves must take responsibility for knowing as much as possible about the medication we take , and not be afraid to ask as many questions as we need to.
I still work in the N.h.S. and am shocked and amazed by how little some people know about their conditions , the drugs they are prescribed , and the plan or progression/ regression of their illnesses.
They sometimes ask me difficult questions, which I'm not qualified or allowed to answer, regarding their drugs and treatment. I cannot answer , of course , and always encourage them to ask the person treating them for these answers. As we all need to do ,in this , our Parkinsons situation.
Drs will answer questions . Their dilemma often is trying to ascertain how much the patient actually wants to be told. Many people simply do not want this information.
The Drs can do much damage equally, by giving information where it's not been asked for.
Best of luck with your husband' continued recovery.
I was dx in 2003 and started on mirapexin titrating up to a dose of 0.7mg x 3 a day within a few weeks.
This was steadily increased as the disease progressed 2004 0.7mg x 6 a day, 2005 0.7mg x 9 a day finally 2006 0.7mg x 12 a day. Which is 8.4 mg a day, some way over the maximum dose of 3.15 mg. At this point I was put on sinamet plus as well as the mirapexin and the selegeline 10mg which I had been taking since 2004.
I dont thnk anyone would be put on such a high dose these days, as the maximum dose is now stipulated on the information leaflet. At the time I recall the dosage was advisory but could be increased by a neurologist.
I did suffer from OCD/ICD probably straight away, but more noticable as the dose increased and also with with the introduction of sinamet in 2006. In 2008 I raised the issue with my neuro with a view to coming off the drug (because I had to, to remain in work, not because I wanted to.)
After trying to come off the drug I found I became increasingly depressed. I also found that my body felt like it had ants under the skin. I returned to a 0.35mg x 3 a day dosage and now take it in one slow release tablet with selegeline as before and 150mg x 4 a day of Stalevo.
In my experience the mirapexin was beneficial in that it extended the period without the need for levadopa, it helped my body movement to improve, took away muscular pain in the back and gave me a feeling of well being.
On the negative side the OCD problems were instrumental in my having to finish work early and had a detrimental effect on my relationship with my partner and cost me a few hundred quid. Fortunately gambling was not a problem for me.
I would say that it has been learning curve for all concerned.
More explanation and careful monitoring of the drugs would certainly help the situation. It is difficult for the medics to get it right because the feedback is not forthcoming from the patient.
In conclusion I believe that das are beneficial as a treatment for pd provided there is patient awareness and proper monitoring.
This was steadily increased as the disease progressed 2004 0.7mg x 6 a day, 2005 0.7mg x 9 a day finally 2006 0.7mg x 12 a day. Which is 8.4 mg a day, some way over the maximum dose of 3.15 mg. At this point I was put on sinamet plus as well as the mirapexin and the selegeline 10mg which I had been taking since 2004.
I dont thnk anyone would be put on such a high dose these days, as the maximum dose is now stipulated on the information leaflet. At the time I recall the dosage was advisory but could be increased by a neurologist.
I did suffer from OCD/ICD probably straight away, but more noticable as the dose increased and also with with the introduction of sinamet in 2006. In 2008 I raised the issue with my neuro with a view to coming off the drug (because I had to, to remain in work, not because I wanted to.)
After trying to come off the drug I found I became increasingly depressed. I also found that my body felt like it had ants under the skin. I returned to a 0.35mg x 3 a day dosage and now take it in one slow release tablet with selegeline as before and 150mg x 4 a day of Stalevo.
In my experience the mirapexin was beneficial in that it extended the period without the need for levadopa, it helped my body movement to improve, took away muscular pain in the back and gave me a feeling of well being.
On the negative side the OCD problems were instrumental in my having to finish work early and had a detrimental effect on my relationship with my partner and cost me a few hundred quid. Fortunately gambling was not a problem for me.
I would say that it has been learning curve for all concerned.
More explanation and careful monitoring of the drugs would certainly help the situation. It is difficult for the medics to get it right because the feedback is not forthcoming from the patient.
In conclusion I believe that das are beneficial as a treatment for pd provided there is patient awareness and proper monitoring.
hi goldengirl
I truly hope things get better for you and your husband. Believe me you are past the worst of your nightmare. I feel confident that slowly but surely the man you love and known for the last 50 years will come back to you. Its going to take a few more months, however it sounds like your getting the right sort of support.
You said, while your husband was on DA's the thrill came from risk taking, and he did not think or care about the consequences. You also mentioned he was in a constant state of euphoria. The thrill seeking and risk taking driven by a constant state of euphoria, is one of the key differences between OCD behaviour and pathological behaviour. This is why medication dosage levels are key? For example someone could develop OCD behaviour that does not lead to them hitting the self destruct button. It may be annoying or distract them away from doing the normal day to day stuff they should be doing! However at this point the brain still retains a handle on what i call "the moral button", in other words knowing right from wrong. When you increase medication levels, that's when there is a danger of moving from OCD to pathological behaviour. Now this is the key point because everyone is different, one person could still ok while on high levels of medication, yet someone elses brain could turn off the "moral button" whilst only taking a fairly low dosage.
This is why its not acceptable to say things like "its down to the individuals will power" or " its the patient's responsibility to know all about the side effects or about pathological behaviour etc" Sure as patients i fully except we have a responsibility to read medication leaflets and find out as much as possible about the pills we take. However the first priority for me is that every neuro without exception should be risk assessing and warning patients of any potential risks. Furthermore drug companies cannot be allowed to continue publishing inaccurate or mis-leading info.
In my view someone prescribed DA's by a neuro without being told of any risks and provided with mis-leading info from the drug company, cannot then be told after becoming a pathological sex addict or gambler, well its your own fault you should of checked things out for yourself. Its a bit like buying a brand new car, killing someone because it was not fitted with brakes. Then when your in court on a charge of manslaughter, the judge says its your fault because you did not bother to find out if the car was fitted with brakes.
I truly hope things get better for you and your husband. Believe me you are past the worst of your nightmare. I feel confident that slowly but surely the man you love and known for the last 50 years will come back to you. Its going to take a few more months, however it sounds like your getting the right sort of support.
You said, while your husband was on DA's the thrill came from risk taking, and he did not think or care about the consequences. You also mentioned he was in a constant state of euphoria. The thrill seeking and risk taking driven by a constant state of euphoria, is one of the key differences between OCD behaviour and pathological behaviour. This is why medication dosage levels are key? For example someone could develop OCD behaviour that does not lead to them hitting the self destruct button. It may be annoying or distract them away from doing the normal day to day stuff they should be doing! However at this point the brain still retains a handle on what i call "the moral button", in other words knowing right from wrong. When you increase medication levels, that's when there is a danger of moving from OCD to pathological behaviour. Now this is the key point because everyone is different, one person could still ok while on high levels of medication, yet someone elses brain could turn off the "moral button" whilst only taking a fairly low dosage.
This is why its not acceptable to say things like "its down to the individuals will power" or " its the patient's responsibility to know all about the side effects or about pathological behaviour etc" Sure as patients i fully except we have a responsibility to read medication leaflets and find out as much as possible about the pills we take. However the first priority for me is that every neuro without exception should be risk assessing and warning patients of any potential risks. Furthermore drug companies cannot be allowed to continue publishing inaccurate or mis-leading info.
In my view someone prescribed DA's by a neuro without being told of any risks and provided with mis-leading info from the drug company, cannot then be told after becoming a pathological sex addict or gambler, well its your own fault you should of checked things out for yourself. Its a bit like buying a brand new car, killing someone because it was not fitted with brakes. Then when your in court on a charge of manslaughter, the judge says its your fault because you did not bother to find out if the car was fitted with brakes.
Thank you all for being so brave and honest with your experiences. I feel this is how the thread should have been from the beginning. The lessons are invaluable for those, like me, at the beginning of the PD journey. We have a long road of decisions ahead, and we need all this information. Thank you again.
Hi,
From the latest postings on here it is a relief to see some sort of a gelling together of views instead of a wide divide.
Eck and Golden girl,there is no doubting the effect DA,s have had on your lives.Reading your experiences,wearing your heart on your sleeves,is commendable and i feel sorry for what you have gone through.
Lorna and Leyther,i like the sensible and correct summaries you have given and totally agree with what you have said.
I think there is a difference(which is becoming more and more apparent)between then and now.The over medication that you mention Lorna and not just in PD,is a major factor.You mention your experiences in other medical areas and can see the full picture.The maximum dosage advise mentioned by Leyther on the leaflets,this is now in place to prevent those heady higher dosage problems.The advice is there because mistakes have been learnt by the problems experienced by Eck,Goldengirl,Leyther and others in the past.
The past and present are important as to where a line is to be drawn or a cross over point.I believe that now,with awareness and with all the information.Threads like this one should be looking positively forward,with all mistakes left behind.A positive view to all new comers needing relief from their symptoms,instead of being scared away from the drugs which will give them a good quality of life.
All the best
Titan
From the latest postings on here it is a relief to see some sort of a gelling together of views instead of a wide divide.
Eck and Golden girl,there is no doubting the effect DA,s have had on your lives.Reading your experiences,wearing your heart on your sleeves,is commendable and i feel sorry for what you have gone through.
Lorna and Leyther,i like the sensible and correct summaries you have given and totally agree with what you have said.
I think there is a difference(which is becoming more and more apparent)between then and now.The over medication that you mention Lorna and not just in PD,is a major factor.You mention your experiences in other medical areas and can see the full picture.The maximum dosage advise mentioned by Leyther on the leaflets,this is now in place to prevent those heady higher dosage problems.The advice is there because mistakes have been learnt by the problems experienced by Eck,Goldengirl,Leyther and others in the past.
The past and present are important as to where a line is to be drawn or a cross over point.I believe that now,with awareness and with all the information.Threads like this one should be looking positively forward,with all mistakes left behind.A positive view to all new comers needing relief from their symptoms,instead of being scared away from the drugs which will give them a good quality of life.
All the best
Titan
I agree that "threads like this one should be looking positively forward, with all mistakes left behind. A positive view to all new comers needing relief from their symptoms,instead of being scared away from the drugs which will give them a good quality of life." However, through my experiences and observation as an administrator and moderator of a PD forum, itās blatant that this is still a big problem and not all Health professionals are raising awareness with patients and monitoring their response to medication. Over the last few months, new members have joined my site seeking advice and support due to drugs used to treat Parkinson's changing their behaviour, which has taken over their lives, leading to unforeseen crisis and suicidal tendencies. Some do not see the connection with the drugs they are on, often confused by their behaviour, and find it hard to live with their self, engulfed by emotional torment. Many of them have not been on high doses; in fact, they have developed behavioural changes on quite low doses. Others have been ok on a dopamine agonist but later introduced levadopa which as fuelled the dopamine agonist and took them over the edge.
Also what concerns me is there is very little or no after care and support for people who have been through such devastation and if so, itās often of short duration ~ the aftermath of such devastation never leaves you. I've already spoken to the Parkinsonās UK, in fact it was the tail end of 2008 when I discussed my concerns, stressing some kind of overall awareness somehow needs to be put forward. Yes there are information sheets on the Parkinsonās UK but most people arenāt aware they are there and don't seek advice until they are experiencing problems and feel too ashamed to come forward so the behaviour continues and life's are disrupted. There needs to be some kind of chat line where people could chat with a trained counsellor in impulsive disorders without feeling judged. Chatting with other people who have been through similar experiences is of great value and is greatly welcomed.
Thank goodness for forums like this!!
Also what concerns me is there is very little or no after care and support for people who have been through such devastation and if so, itās often of short duration ~ the aftermath of such devastation never leaves you. I've already spoken to the Parkinsonās UK, in fact it was the tail end of 2008 when I discussed my concerns, stressing some kind of overall awareness somehow needs to be put forward. Yes there are information sheets on the Parkinsonās UK but most people arenāt aware they are there and don't seek advice until they are experiencing problems and feel too ashamed to come forward so the behaviour continues and life's are disrupted. There needs to be some kind of chat line where people could chat with a trained counsellor in impulsive disorders without feeling judged. Chatting with other people who have been through similar experiences is of great value and is greatly welcomed.
Thank goodness for forums like this!!
Golden Girl I have read your posts with interest having had lots of problems with my husband and compulsive behaviour. We, too, are trying to rebuild our marriage but it is extremely difficult. I wondered how you managed to see a neuropsychologist. Were you referred by your GP or neurologist? Our GP has suggested Relate but we tried that before with no success as they have no knowledge of either Parkinson's Disease or the devastating effects of DAs and at the time my husband was in denial about his behaviour so it was pointless. I would appreciate your advice. Thank you.
Hi Libra lady,
My Neurologist referred me to a Neuropsychologist.
My Neurologist referred me to a Neuropsychologist.
hi cutie
I absolutely support everything you said, this is NOT an issue which is behind us as titan describes it. I think anybody with an open mind who follows this and other PD forum's, can see new cases of pwp not being made aware of the risks by health professionals etc. Its a breath of fresh air to hear your also starting to put some pressure on PUK, to step up to the mark and take some leadership on this issue.
Following my response to Tim the moderators posting last Friday in which i said "there is no action on the action plan", their has been several exchanges of email over the weekend between the Director of campaigns at PUK and myself. If what I'm now being told via these email exchanges is true, then PUK are promising to raise their game? I have on more than one occasion asked both Steve and Val at PUK to make a statement on the forum about this issue. I think this would at least offer some re-assurance that people in charge at the charity understand more needs to be done and quickly.
best wishes
bluey
I absolutely support everything you said, this is NOT an issue which is behind us as titan describes it. I think anybody with an open mind who follows this and other PD forum's, can see new cases of pwp not being made aware of the risks by health professionals etc. Its a breath of fresh air to hear your also starting to put some pressure on PUK, to step up to the mark and take some leadership on this issue.
Following my response to Tim the moderators posting last Friday in which i said "there is no action on the action plan", their has been several exchanges of email over the weekend between the Director of campaigns at PUK and myself. If what I'm now being told via these email exchanges is true, then PUK are promising to raise their game? I have on more than one occasion asked both Steve and Val at PUK to make a statement on the forum about this issue. I think this would at least offer some re-assurance that people in charge at the charity understand more needs to be done and quickly.
best wishes
bluey
Hi Libra Lady
I can't say it was easy to get a referral to the neuropsychologist.
The suggestion came from the Parkinson's nurse who knew of her but hadn't met her.Her role is, I think, to deal with psychiatric problems caused by neurological illnesses and /or their treatment
With our permission she rang her and explained the state we were in.
She said she had to receive a referral from a consultant.
Our neorologist initially refused but when my husband was admitted to hospital in a suicidal state the consultant griatrician there made the referral.
The waiting list was 4 months for urgent cases and 1 year for non-urgent.
Our GP also wrote to her to add weight to the request.
We were offered an appointment within a few weeks of my husband's discharge and the weekly sessions are helping us enormously.
I can't give you any advice except maybe to contact your Parkinson's nurse and see if you can get her to get the consultant neurologist to refer you both.
I do hope you can find the help you need.
I might be wrong but I sense a feeling that the people helping us now feel we have been badly let down by the medical profession and are trying to repair the damage.
Good Luck!
X
I can't say it was easy to get a referral to the neuropsychologist.
The suggestion came from the Parkinson's nurse who knew of her but hadn't met her.Her role is, I think, to deal with psychiatric problems caused by neurological illnesses and /or their treatment
With our permission she rang her and explained the state we were in.
She said she had to receive a referral from a consultant.
Our neorologist initially refused but when my husband was admitted to hospital in a suicidal state the consultant griatrician there made the referral.
The waiting list was 4 months for urgent cases and 1 year for non-urgent.
Our GP also wrote to her to add weight to the request.
We were offered an appointment within a few weeks of my husband's discharge and the weekly sessions are helping us enormously.
I can't give you any advice except maybe to contact your Parkinson's nurse and see if you can get her to get the consultant neurologist to refer you both.
I do hope you can find the help you need.
I might be wrong but I sense a feeling that the people helping us now feel we have been badly let down by the medical profession and are trying to repair the damage.
Good Luck!
X
I've taken a look at the action plan and it looks like the Parkinson's UK are really making an effort. I thought I'd bring the post Tim posted a few days ago forward.
Full details of the Parkinson's UK action plan on compulsive and impulsive behaviours can be found at
http://www.parkinsons.org.uk/Docs/Impulsivecompulsivebehaviouractionplan2011.doc
This was drawn up following the Consultaion day held earlier in the year that brought together people affected by Parkinson's, professionals and researchers.
If anybody would like to contribute to this work please contact
campaigns @ parkinsons.org.uk
Full details of the Parkinson's UK action plan on compulsive and impulsive behaviours can be found at
http://www.parkinsons.org.uk/Docs/Impulsivecompulsivebehaviouractionplan2011.doc
This was drawn up following the Consultaion day held earlier in the year that brought together people affected by Parkinson's, professionals and researchers.
If anybody would like to contribute to this work please contact
campaigns @ parkinsons.org.uk
Having followed this thread throughout, an idea occurs to me now regarding the difficulty in getting to see a Neurophsycologist. Clearly, there is an urgent need for a competent source of help for those who have been so badly damaged to try and repair that damage. It strikes me that this is a golden opportunity for PUK to do something very valuable for its current members. With the best will in the world, most of PUKās expenditure on research is not going to benefit those of us affected now, but later generations. This is commendable and essential work, but there are people suffering NOW, who could be helped if only they could access that help. Delays of four months for any cases, not just urgent ones, to begin receiving help is wholly unacceptable in my view, while a year is simply ludicrous. If PUK had one or two Neurophsycologists of its own, with up to the minute knowledge and understanding of the problemsā causes and effects, I believe a lot of people could benefit greatly in a relatively short time-frame. I know that good ones won't come cheap, but wouldn't it be money well spent?
Or am I dreaming?
I would like to offer my thanks and best wishes to those who have bared their souls here, and who have shown me what a narrow escape I had.
Peter.
Or am I dreaming?
I would like to offer my thanks and best wishes to those who have bared their souls here, and who have shown me what a narrow escape I had.
Peter.
hi cutie
Yes i was already aware from Tim's post last week, that PUK had drawn up a plan following last January's consultation. My concern was more around the lack progress and focus "the plan" was currently getting. I could of spent time posting examples that qualified the grounds for my concern? However last Friday's forum debate seems to hopefully now got things moving!
So in the interest of positive thinking and moving forward, i have once again offered to be part of the Campaign steering group. Now all I'm waiting for are some steering group meeting dates and for PUK to appoint dedicated resource, to act as the campaign catalyst?
Yes i was already aware from Tim's post last week, that PUK had drawn up a plan following last January's consultation. My concern was more around the lack progress and focus "the plan" was currently getting. I could of spent time posting examples that qualified the grounds for my concern? However last Friday's forum debate seems to hopefully now got things moving!
So in the interest of positive thinking and moving forward, i have once again offered to be part of the Campaign steering group. Now all I'm waiting for are some steering group meeting dates and for PUK to appoint dedicated resource, to act as the campaign catalyst?
Lets summarise.
THE PROBLEM
DAs and other Parkinsons drugs either in combination or in isolation can cause compulsive/impulsive/risk taking behaviours. Anyone in doubt please read the leaflets with your drugs.
These drugs are necessary for PWP to function, therefore the correct information and support must be provided to manage any associated compulsive behaviour problems.
HOW THE PROBLEM MANIFESTS
For compulsive behaviour to take place the dosage and length of time on a drug does not have to be significantly high and is relative to the individual. For sure I was at my worst on high doses but on relatively low doses I was starting to miss work. Thats life changing if you get sacked. People are affected in different ways. Gambling and Hypersexuality are at the forefront but addiction to shopping and internet games etc can be equally as destructive if they impinge on your life. Even with prior knowledge your behaviour can change. Your circumstances may change and no one may be available to monitor you. That happened to me. Significant effects on family life and finances have been widely reported. There are a number of common patterns of behaviour that identify them as drug related problems. Reducing the drug or stopping it entirely provides confirmation that the drug is the problem as the unwanted behaviour is brought under control.
THE EXTENT OF THE PROBLEM
The majority of PWP I have met have shown evidence of a drug induced compulsive disorder. The type of compulsion and how it manifests varies with the individual as does the impact it has on their life. However there has been enough scientific and anecdotal evidence to warrant preventative and supportive action being implemented by the relevant authorities. In recent years this has been acknowledged by all concerned bodies and has resulted in warnings being placed on drug leaflets and neuros starting to inform and question patients.
CURRENT PREVENTATIVE MEASURES
Drug companies warning of behavioural problems on leaflets.
Neuro practices inform and question patients during consultations.
Psychological support is offered to those affected.
CONCERNS
Patients are not fully aware of the nature of the compulsive behaviour caused by pd drugs eg Hypersexuality is often connected with increased libido and made light of.
Statistical Information provided by drug companies can suggest the problem is not as serious as we are actually experiencing. Statistical evidence is difficult to verify as due to the nature of the compulsions many patients will not confide the true extent of their problem.
The standard of neuro care varies widely across the UK with many patients not treated by a PD specialist. Giving the correct information to patients may not be a priority and may even be dismissed as unnecessary.
Neuros tend to ask about problems at the end of hurried consultations during which a junior medic may be present or the patient may be in attendance with a spouse or partner. This is not suitable for discussing such matters.
Having no real insight into the nature of the behaviour the neuro ask stock questions that the patient can easily deflect. In addition patient consultations are also constrained by time.
There are still high doses of drugs prescribed to some patients.
GPs and Pharmacists are not sufficiently aware of the behavioural problems with these drugs and donāt operate a safety net.
Psychological and counselling support can be inadequate both in provision and in understanding the issues involved.
Research is dedicated to statistical analysis of the problem. Trying to find out what we already know is neither helpful nor is it a suitable use of available funds.
The PUK are not active enough on this issue instead paying lip service by funding useless research or providing inadequate support mechanisms.
WHAT NEEDS TO BE DONE
Patients need to be kept fully informed but must also realise that they and the people monitoring them must take responsibility for their illness and take this issue seriously.
The medical profession and its support bodies need to stop treating PWP as a commodity/burden/object.
They need to realise that to manage this situation properly they need to buy into our experience and self-developed skills acquired as hosts of this illness.
Guessing is not good enough. They canāt get into our heads so have no handle on the true nature of the illness and the effects of the drugs on our behaviour.
To achieve progress they need to provide us with the conditions whereby we can educate all involved in how the compulsions start, develop and manifest. They need to be able to ask the right questions in the right way and in a non-threatening environment. They need to have the correct level of support available and it must be effective.
To move this forward and prevent further suffering this needs implementing immediately.
Acquiring the information from us is neither costly nor time consuming. Neither is informing the appropriate bodies.
Compared to the money wasted on useless research to date it is small beer.
NOW THE HARD BIT
How to get this message across. Thinking caps on folks.
Leyther
THE PROBLEM
DAs and other Parkinsons drugs either in combination or in isolation can cause compulsive/impulsive/risk taking behaviours. Anyone in doubt please read the leaflets with your drugs.
These drugs are necessary for PWP to function, therefore the correct information and support must be provided to manage any associated compulsive behaviour problems.
HOW THE PROBLEM MANIFESTS
For compulsive behaviour to take place the dosage and length of time on a drug does not have to be significantly high and is relative to the individual. For sure I was at my worst on high doses but on relatively low doses I was starting to miss work. Thats life changing if you get sacked. People are affected in different ways. Gambling and Hypersexuality are at the forefront but addiction to shopping and internet games etc can be equally as destructive if they impinge on your life. Even with prior knowledge your behaviour can change. Your circumstances may change and no one may be available to monitor you. That happened to me. Significant effects on family life and finances have been widely reported. There are a number of common patterns of behaviour that identify them as drug related problems. Reducing the drug or stopping it entirely provides confirmation that the drug is the problem as the unwanted behaviour is brought under control.
THE EXTENT OF THE PROBLEM
The majority of PWP I have met have shown evidence of a drug induced compulsive disorder. The type of compulsion and how it manifests varies with the individual as does the impact it has on their life. However there has been enough scientific and anecdotal evidence to warrant preventative and supportive action being implemented by the relevant authorities. In recent years this has been acknowledged by all concerned bodies and has resulted in warnings being placed on drug leaflets and neuros starting to inform and question patients.
CURRENT PREVENTATIVE MEASURES
Drug companies warning of behavioural problems on leaflets.
Neuro practices inform and question patients during consultations.
Psychological support is offered to those affected.
CONCERNS
Patients are not fully aware of the nature of the compulsive behaviour caused by pd drugs eg Hypersexuality is often connected with increased libido and made light of.
Statistical Information provided by drug companies can suggest the problem is not as serious as we are actually experiencing. Statistical evidence is difficult to verify as due to the nature of the compulsions many patients will not confide the true extent of their problem.
The standard of neuro care varies widely across the UK with many patients not treated by a PD specialist. Giving the correct information to patients may not be a priority and may even be dismissed as unnecessary.
Neuros tend to ask about problems at the end of hurried consultations during which a junior medic may be present or the patient may be in attendance with a spouse or partner. This is not suitable for discussing such matters.
Having no real insight into the nature of the behaviour the neuro ask stock questions that the patient can easily deflect. In addition patient consultations are also constrained by time.
There are still high doses of drugs prescribed to some patients.
GPs and Pharmacists are not sufficiently aware of the behavioural problems with these drugs and donāt operate a safety net.
Psychological and counselling support can be inadequate both in provision and in understanding the issues involved.
Research is dedicated to statistical analysis of the problem. Trying to find out what we already know is neither helpful nor is it a suitable use of available funds.
The PUK are not active enough on this issue instead paying lip service by funding useless research or providing inadequate support mechanisms.
WHAT NEEDS TO BE DONE
Patients need to be kept fully informed but must also realise that they and the people monitoring them must take responsibility for their illness and take this issue seriously.
The medical profession and its support bodies need to stop treating PWP as a commodity/burden/object.
They need to realise that to manage this situation properly they need to buy into our experience and self-developed skills acquired as hosts of this illness.
Guessing is not good enough. They canāt get into our heads so have no handle on the true nature of the illness and the effects of the drugs on our behaviour.
To achieve progress they need to provide us with the conditions whereby we can educate all involved in how the compulsions start, develop and manifest. They need to be able to ask the right questions in the right way and in a non-threatening environment. They need to have the correct level of support available and it must be effective.
To move this forward and prevent further suffering this needs implementing immediately.
Acquiring the information from us is neither costly nor time consuming. Neither is informing the appropriate bodies.
Compared to the money wasted on useless research to date it is small beer.
NOW THE HARD BIT
How to get this message across. Thinking caps on folks.
Leyther
1 Like
http://www.parkinsons.org.uk/default.aspx?page=11431
This link appears on another post from Cutiepie.It is an important development in the raising of awareness and needs our support.
Is there any way we can ensure that this thread appears always on the first page as it is such an important topic to those suffering from OCds and those who fear they may be?
Can we give permission for stories posted on this thread to be made available to those wanting to inform and educate those involved in the care of patients with present,past or future DA/OCDs but be granted anonimity?
I would volunteer my and my huaband's experiences to those who are trying to help and understand.How do I do this?
This link appears on another post from Cutiepie.It is an important development in the raising of awareness and needs our support.
Is there any way we can ensure that this thread appears always on the first page as it is such an important topic to those suffering from OCds and those who fear they may be?
Can we give permission for stories posted on this thread to be made available to those wanting to inform and educate those involved in the care of patients with present,past or future DA/OCDs but be granted anonimity?
I would volunteer my and my huaband's experiences to those who are trying to help and understand.How do I do this?
My God, we are getting out of a rut and flying, let's not let it stall.
I'm glad this topic has gained the recognition it should. Instead of becoming an embarresment.
I've yet to see a psychologist. When I was at my lowest ebb, I asked my GP to refer me for counselling. Give him his due, he did.
In Glasgow anyway you get a letter some weeks later, about 6, saying you need to phone to confirm you still want an appointment. So I phoned to confirm I stilL wanted to see someone. By not phoning they strike you from the list.
About 6 weeks later you get a date to see a nurse (I'm hoping I saw a nurse cos if that was a doctor ...) for an assessment. Again this is 6 weeks away.
I turned up, was asked how I was feeling. Told him I was suicidal. That I couldn't be bothered with anything or anybody. He said I wasn't depressed what I needed to do was join a PD support group. I laughed and left.
I found out through my wife's GP, that I should have seen a psychologist. I went back to my GP, 6 weeks until my 1st letter, etc etc etc.
In a fit of deression I binned it.
Now given the state of mind people who seek their help are in, you would think someone would follow up to see if you were OK. If there was some reason you failed to call. NOPE. Only too eagre to get you off the list.
I'm sure the help is great when or you manage to get it. I can't comment cos I haven't had any
I'm glad this topic has gained the recognition it should. Instead of becoming an embarresment.
I've yet to see a psychologist. When I was at my lowest ebb, I asked my GP to refer me for counselling. Give him his due, he did.
In Glasgow anyway you get a letter some weeks later, about 6, saying you need to phone to confirm you still want an appointment. So I phoned to confirm I stilL wanted to see someone. By not phoning they strike you from the list.
About 6 weeks later you get a date to see a nurse (I'm hoping I saw a nurse cos if that was a doctor ...) for an assessment. Again this is 6 weeks away.
I turned up, was asked how I was feeling. Told him I was suicidal. That I couldn't be bothered with anything or anybody. He said I wasn't depressed what I needed to do was join a PD support group. I laughed and left.
I found out through my wife's GP, that I should have seen a psychologist. I went back to my GP, 6 weeks until my 1st letter, etc etc etc.
In a fit of deression I binned it.
Now given the state of mind people who seek their help are in, you would think someone would follow up to see if you were OK. If there was some reason you failed to call. NOPE. Only too eagre to get you off the list.
I'm sure the help is great when or you manage to get it. I can't comment cos I haven't had any
there is help and people who will guide you but at the end of the day me you have pd thats it so we lay down and let it take over your life or just take yourself on a new way of livin in a dif way