Thank you for telling me where the post was - I realise what I was doing wrong and have found it since
I honestly don't understand why people are objecting to the bad side of da's being advertised, I have no problem with people telling their good stories, indeed I would love to hear more good stories, but there doesn't seem to be many around that I can find.
As an outsider to parkinsons when I went looking for information on the net all I could find was how with drugs parkinsons could be controlled and everyone lived happy and fulfilling lives, my personal experience however was sadly not the same. Nowhere did it mention anything about the adverse side effects of the drugs and what can happen, it was only when X started gambling and acting strangely and I found this forum that I realised the connection between the drugs and what was happening. There will be new people like myself coming into contact with this subject every day and maybe this is really the only place they can find the help and support they need. Even the drug leaflets don't describe it adequately, they say something like the person may experience gambling - they don't say the person will spend their live savings, remortgage their homes and end up owing hundreds of thousands of pounds that they can never pay back and while they are doing this noone will believe it's the medication and will not change their medication. At the beginning X actually sat infront of me gambling on the computer but I honestly didn't realise the seriousness of the situation.
At the beginning of this website the DA/OCD problem is covered in a few lines, and people who have been through it are invited to send in their details for possible inclusion. I sent mine in ages ago, with all the gory details in, but they've never published it. Far too scary, mustn't shock people.
Instead there are 3 "sample cases", all sweet and nice and mild.
It's obvious that throughout the PD world the whole issue is being swept under the carpet, I just really don't know WHY.
Right. 76% are taking DAs succesfully, and their mobility etc have - as a result - improved greatly. They are very happy and want nothing changed.
There is a possibility that they (or indeed everyone) really ARE susceptible to the BAD side effects of DAs, but it's just a matter of tolerance. In other words while I may suffer from OCDs if I only take 1mg per day, Titan may need to ingest 8mg a day in order to trigger HIS bad reaction. However if that is so, we'll all eventually suffer OCDs, because our doses are likely to increase over time until we each hit our thresholds.
Anyway, back to the current, happy, 76%. Their biggest fear by far is that DAs are deemed by the UK's drug control authorities so seriously bad for the 24% that they decide to withdraw DAs from the market altogether. That's to say that the bad side effects of the DAs on the 24% are SO bad that they outweigh the beneficial effects being experienced by the predominant 76%.
So the two bad things the 76% hate to hear about are (a) new research figures which show that a higher percentage of DA takers than we'd thought are suffering OCDs, and (b) The actual seriousness of the OCD effects is worse than we thought. So anything which makes the suffering appear even greater is immediately decried by the 76%, even before they've checked out the details.
Points which might fall into the latter group might be the inability to get out of the "mire" by yourself (by using willpower alone, for example); exaggerated pain, financial loss, family problems etc; the denouncing of ideas that whilst one is on OCDs one finds it very enjoyable, possibly to the point of not wanting to leave it, and the convenience of a retrospective alibi.
So the worse the OCD data gets, the more the 76% will fight to disprove it.
I'm sorry to hear things did not work out with your x. I fully understand your sadness, because the trust has been broken and this becomes a downhill journey. To those around him, your x is now damaged goods and his past relationships will never be the same again. He has to try and move on, draw a line in the sand and not try to fix things by turning the clock back.
Those few forum members who sit in judgement and seem to look down on us, have little or no idea of what its really like. For many of us the worse part is not the side effects, its the baggage you carry around with you for years to come. I am now losing count of the number people who have ended up with criminal records, gone bankrupt or are riddled by debt, seen relationships destroyed, lost their job and homes and now face a bleak and uncertain future.
This issue first hit the airwaves 10 years ago. Yet still warnings from drug companies (regulated in the UK) are at best inconsistent and in some cases mis-leading us. We have a medical establishment lagging behind the reality of the situation and in many cases being guided by the drug companies. Then just to top everything we have an organisation like PUK who currently are just ticking boxes and making polite noises, but not doing very much.
I cannot believe what is going on. When I finally understood the extend of what was happening and rang the hospital it never occured to me that they would not help me. Everything he was doing was on the patient leaflet but they didn't want to know.
As for baggage, before starting on da's X owned his own home outright and had 80,000 in the bank with a very good works pension, he was secure for the rest of his life financially. Since being on da's he took out mortgages to buy houses that he cannot pay back, remortgaged his own house, the 80,000 is gone and he gambled. I do not know the true extent of his finances, but a conservative estimate going on what I do know for sure would be that he now owes in the region of 300,000. I get really mad when I hear people saying that these people are using the drug as an excuse for their bad behaviour, why would a man who had spent his entire life building a secure future suddenly throw everything away? I think people believe what they want because it suits them better than the truth.
The last time I saw him he said he's not a bad person - which I knew already - but he felt the need to point this out to me because of everything that had happened and everything he had done.
I'm sorry but I'm one of those that made sure my closest family read ALL med leaflets, and I told them to point out if there's ANY changes in my character,I'm one of the 'lucky' ones the only difference is I know I'm shopping a bit more.My son and I noticed at the same time,I will not get into any kind of debt because of this,I already know I cannot live beyond my means. My sincere apologies to pwp on DA's that has gone down that path,I find it difficult to comprehend that themselves didn't notice ANY change in their own behaviour or reflect on what others were trying to tell them.
Ray, what has the prediction of an asteroid got to do with this thread?
I have read the link,the last paragraph was interesting!
I don't remember saying as you quoted "a load of cack"
Why not let each and everyone of us have our own opinion without you being so bitter over your personal experiences with DA's. You could have read and paid attention to the leaflet provided with meds.
"You should of read and paid attention to the leaflet provided with the meds"
Firstly until 2007 there was no mention of OCD side effects in any leaflets.
Secondly even in 2011 the information is mostly mis-leading or in some cases completely inaccurate. Also this does not take into account that some health professionals fail to warn or play down the side effects with new patients. Furthermore what about someone who is single and living alone, who do they ask to keep an eye on them, their cat or dog?
Its great news that many people are benefiting from DA's however this does not excuse drug companies or health professionals from upping their game rather than trying to sweep things under carpets.
The key word is "can" unlike cigarette's which "do" harm you. None of the drug companies currently make any reference to the fact DA's might not be suitable for people with a history of OCD behaviour or depression? It would be a start if they just said, if you have suffered previously from depression or OCD then talk to your doctor before taking this medication.
In the UK the number one prescribed DA is Requib (Ropinirole). According to the website and leaflet, OCD side effects is listed as VERY RARE and only affects around 1 in 1000 people! This is of course is a complete and utter load of rubbish.
Maybe you should move to France because the Lawyers there appear to be including hypersexuality in damages claims?
I attached a link which highlights a case which is currently going through the French courts. Interesting the gentleman in question is also claiming against his neuro, stating he failed to accurately warn him of the potential side effects. Maybe if one or two neuro's in the UK ended up in court, the medical profession might sit up and take notice. However it seems the UK's legal system wont offer legal aid and appear reluctant to get involved or follow the lead being taken in other countries around the world. Guess they are to busy with cases of celeberity phone hackers, bent Politicians and Rioters.
Some phrases in your post indicate a genuine a lack of understanding or grasp of the complexity of the neurological processes involved. In the UK alone we have scores of professorial experts devoting their lives to investigating how these bio-chemicals, neurons and receptors operate and interact, carrying out test after test at all levels, right down to tinkering with single cells. Even THEY don’t understand the half of what’s going on, and they’re discovering new features daily.
So the likes of you and me have no chance. There are different neurons doing thousands of different jobs, some utilise dopamine, some don’t. Some control memory, some recall. Some fight, some flight. Some risk, some reward. There are even some whose sole function is to check your current behaviour is socially appropriate for your present surroundings.
Thus a neurological strategy of swamping the whole area with DAs and hoping you trigger the right receptors whilst avoiding the wrong ones seems a trifle dangerous to me, and has proved to be so for AT LEAST 24% of us.
You say “I’m sorry, but I’m one of those who made sure.............”, implying that out of all the 30,000 (24%) OCD-susceptible patients in the UK, ONLY YOU ensured that those around you read ALL the leaflets and kept a lookout for you. Presumably the other 29,999 went on to accumulate massive debts and lose our houses, etc? Silly us, serves us right. Should have been more careful, thickos!
You then say “I’m one of the ‘lucky ones’ the only difference is I know I’m shopping a bit more........” On the contrary, you are one of the UNLUCKY ones. Every OCD-susceptible person has a different starting threshold at which the OCDs will start to kick in, and once your daily dose reaches your personal threshold, you’re off! You have already noticed your spending increasing, so we know that you ARE one of the susceptible 24%. And we’ve noticed the problem is currently not major, which suggests you’re now teetering on your threshold. The next time your dosage is increased, beware!
You assure us that “I will not get into any kind of debt ........... know I cannot live beyond my means.” Again you’re implying that YOU can be trusted with money but the other 29,999 can’t. Isn’t that a little patronising? Much more importantly, you are SO, SO WRONG. It’s an understandable but very naive way to view such a huge and complex area, which has baffled experts for nearly two decades. ONCE THOSE AGONISTS HAVE TAKEN OVER the relevant receptors and the brain’s risk-and-reward neurological subsystem (whilst indiscriminately screwing up many other unrelated neurons nearby), you will have ceded all control and willpower, and be unable to tell right from wrong or good from bad. Your obsession for shopping (or whatever) will have completely taken over. The need for cash to support these desires WILL drive you heavily into debt, bankruptcy even.
Finally you say “I find it difficult to comprehend that.............didn’t notice ANY change in their own behaviour, or reflect on what others were trying to tell them.” To use myself as an example, I was certainly aware that my behaviour was out-of-character, and that I was indulging in strange pursuits which had never interested me before, but I never for a moment thought that the DA medication could be the cause. After all, the DA had improved my mobility significantly, so I regarded it as a Godsend. So when I needed cash I just took it from wherever I could get it: credit cards, loans or theft. Illegality or immorality really never entered my head – if I wanted cash I went and got some.
As far as observations from those around me went, within less than three years of my starting DAs in 2000 I was divorced (after 30 years), had lost the house, and still owed £150,000 to credit cards. I had also been put on long-term sickness following some odd activities at work. Prior to the DAs I had been a very successful businessman, with a large house on the South Coast, a company car and a son in private education. I now have nothing, and live in a rented slum. Immediately after the split I moved into an apartment in Eastbourne, so with no family, friends or colleagues there was no-one to watch out for me, even if I had wanted there to be.
Many of the worst-hit OCD victims have gone through similar “adventures”. Having previous sound financial backgrounds they had top-notch credit ratings, and even if they had little cash or realisable assets they could get hold of additional credit cards and bank accounts very quickly. These are typically people used to handling multi-million pound corporate budgets, hardly the sort of person that YOU should be lecturing about getting into debt or living beyond their means.
Hence by 2007 I myself was up to £400,000 in debt, and on police bail for a string of frauds. These took 2 years to reach court in 2009, whereupon the judge immediately let me go, as a top London professor gave expert testimony to the court about DAs and OCDs, leading to the judge dismissing the case straight away, after declaring that I could not be held responsible for my actions – NOR ANY DEBTS INCURRED – during the whole period from 2000 to 2007.
PLEASE don’t dismiss this as far-fetched nonsense from a few nutty scaremongers. Many others have done so, and ended up totally destroyed. Wrecked. Just like hundreds of others, including me.
This is a serious thread about a very serious topic. Folk can't just go dropping unfunny comments about celestial bodies into this most serious of subjects.
What's this puerile practice of typing sweary wordies into postings?
This is a serious thread about a very serious topic. Folk can't just go dropping sweary wordies into this most serious of subjects.
As for telling people to lighten up prior to a full scale rant. Utter hypocrisy.
Can we please just stick with the subject at hand from now on, there is a quasi chatroom if you want to chat.
This is a serious thread about a very serious topic. Folk can't just go chatting willy nilly in this most serious of subjects.
If you are referring a specific post, please indicate the specific post you are referring too. Otherwise this leads to a whole load of confusion. We can't go about confusing people in this most serious of subjects.
If it takes, say, 35 mins to write a post. Another 35 mins appreciating the recipients sensibilities would be a great idea. We can educate without talking down to people. Thats right PEOPLE. People with feelings.
This is a serious thread about a very serious topic. Folk can't just go riding roughshod over peoples sensibilities especially in this most serious of subjects.
Just to recap:
No quips about celestial bodies that aren't funny. No puerile practices No hypocrisy Show a bit of decorum when posting in the forum. No chatting Keep to the topic being discussed. AND REMEMBER WE ARE TALKING TO PEOPLE WHO HAVE SENSIBILITIES SO LET'S KEEP IT CIVIL.
I remember once, in the "About the forum" section, when there was an instance where someone tried to get someone barred and all there postings deleted because, get this, LOL, they used their real name as their user name, ROFLMFAO.
