Titan will you do me a favour, will you set up a topic to tell the good side of da's. I'm asking this because as an 'outsider' to this I have not heard or experienced many positive things about da's. Yes you are a positive, but in this thread you are only 1 amongst many negatives, and anyone trying to find information about the positive has to thrawl through the whole thread - it would be so much more helpful if there was a thread with just positive people telling their good stories, and then new comers and people like myself, looking for information, would be able to find the information they needed much easier.
Amy
Good morning, Amy, long time no speak, although we've spent many a long hour in the past mulling over your man's unusual activities. And how's the Emerald Isle today?
If you're looking for positive points about DAs, of which there are certainly many, you've come to the wrong place. The title and subtitle of this thread could not be clearer. It is solely and specifically concerned with the negative issue of DAs causing OCDs, which then often go on to totally and catastrophically wreck every aspect of patients' lives.
Your suggestion for a thread dedicated to the positive things about DAs is great. However, such a thread already exists, but as no-one ever posts anything on it, it never gets to the front. I'm sure you'll find it with a couple of searches.
Finally you don't need to ask Titan to start a thread for you, it's easy enough to do yourself. In fact I recommend you do it yourself, because if it contains your thoughts it should logically have you down as its creator.
Have a good weekend.
Ray.
.
If you're looking for positive points about DAs, of which there are certainly many, you've come to the wrong place. The title and subtitle of this thread could not be clearer. It is solely and specifically concerned with the negative issue of DAs causing OCDs, which then often go on to totally and catastrophically wreck every aspect of patients' lives.
Your suggestion for a thread dedicated to the positive things about DAs is great. However, such a thread already exists, but as no-one ever posts anything on it, it never gets to the front. I'm sure you'll find it with a couple of searches.
Finally you don't need to ask Titan to start a thread for you, it's easy enough to do yourself. In fact I recommend you do it yourself, because if it contains your thoughts it should logically have you down as its creator.
Have a good weekend.
Ray.
.
Ray, just to reinforce the point your making i conducted a little overview of interest shown. I took the number of postings on the "catastrophic" side effects thread vs the two pro DA threads you found.
The evidence is overwhelming to say the least! I even removed the ROS factor from all three threads, so not to allow your critics to use this as a means of attacking you. So if you remove your postings from all three threads, here are the number of postings minus ROS posts.
Catastrophic side effects postings posts since 26/5/11..... 312
Taking DA's and minor problems posts since 31/3/11........ 3
Taking DA's feeling the benefits posts since 1/7/11....... 7
I know some people like to poo poo stats and figures like 1 in 4 or 23% of pwp are affected by this issue. However the simple facts are this issue is still alive and kicking and is very emotive for those affected.
regards
bluey
The evidence is overwhelming to say the least! I even removed the ROS factor from all three threads, so not to allow your critics to use this as a means of attacking you. So if you remove your postings from all three threads, here are the number of postings minus ROS posts.
Catastrophic side effects postings posts since 26/5/11..... 312
Taking DA's and minor problems posts since 31/3/11........ 3
Taking DA's feeling the benefits posts since 1/7/11....... 7
I know some people like to poo poo stats and figures like 1 in 4 or 23% of pwp are affected by this issue. However the simple facts are this issue is still alive and kicking and is very emotive for those affected.
regards
bluey
Hi Amy,
I am afraid you have got things slightly confused,the positive me,if there was ever such a thing,has been replaced.In turmoil would be a better way of putting things.I post now in answer,but the pwp forum moderator,ring master extraordinaire,who likes to pigeon hole everyone according to his own wants and needs.Well he will probably have another go.
So,in further answering your question,there is actually a positive thread already in existence.You may notice i have not been there for a while.
I am in a state of flux,bemused at the antics that surround this whole forum game of cat and mouse,school yard squabbles and thoughtless,pointless exchanges, leading inevitably down blind alleys and dead ends.Nothing really matters at the end of the day,but one thing for sure,i will voice my thoughts wherever i want.If i am a seaside clown then the lion tamer can go exercise control over his Lions and Lionesses.This Clown however will continue to do as he feels fit.Look closely though,i wear a frown,the smile was altered long ago.
So Amy,things change,a storm rages and things will never be the same,
All the best
Titan
I am afraid you have got things slightly confused,the positive me,if there was ever such a thing,has been replaced.In turmoil would be a better way of putting things.I post now in answer,but the pwp forum moderator,ring master extraordinaire,who likes to pigeon hole everyone according to his own wants and needs.Well he will probably have another go.
So,in further answering your question,there is actually a positive thread already in existence.You may notice i have not been there for a while.
I am in a state of flux,bemused at the antics that surround this whole forum game of cat and mouse,school yard squabbles and thoughtless,pointless exchanges, leading inevitably down blind alleys and dead ends.Nothing really matters at the end of the day,but one thing for sure,i will voice my thoughts wherever i want.If i am a seaside clown then the lion tamer can go exercise control over his Lions and Lionesses.This Clown however will continue to do as he feels fit.Look closely though,i wear a frown,the smile was altered long ago.
So Amy,things change,a storm rages and things will never be the same,
All the best
Titan
Ok, Amy? Was that clear and succinct?
Thanks Bluey, says it all I think.
hi titan
I read a post from turnip which i seen on another thread, but cant remember which thread? In it turnip suggested maybe your suffering from what he referred to as chemical madness! This could be due to the DA's over loading your brain with dopamine thus causing you massive highs then lows.
I urge you to consider turnips advise and consider cutting down on DA's and upping slightly on levedopa. I done the whole medication journey and now I'm in the best place that i been in for several years. As you know i lived the Cabergoline side effects nightmare for 3 years. Then spent 6 years on levedopa the last 2 of which were with dyskinesia in toe. Now i am taking a mixture of levedopa and apo-morphine via the Apo pump. Although the apo-morphine is a DA, i don't get any nasty side effects at all. Furthermore my dyskinesia has almost totally disappeared as has my on/off periods. I'm on a low dosage of apo-morphine and only take it during the day and early evening (about 12 hours a day). The net result is my head is clear and i function better now than at any time in the last few years.
Think about it titan, maybe you should consider asking your neuro about the apo pump?
best wishes
bluey
I read a post from turnip which i seen on another thread, but cant remember which thread? In it turnip suggested maybe your suffering from what he referred to as chemical madness! This could be due to the DA's over loading your brain with dopamine thus causing you massive highs then lows.
I urge you to consider turnips advise and consider cutting down on DA's and upping slightly on levedopa. I done the whole medication journey and now I'm in the best place that i been in for several years. As you know i lived the Cabergoline side effects nightmare for 3 years. Then spent 6 years on levedopa the last 2 of which were with dyskinesia in toe. Now i am taking a mixture of levedopa and apo-morphine via the Apo pump. Although the apo-morphine is a DA, i don't get any nasty side effects at all. Furthermore my dyskinesia has almost totally disappeared as has my on/off periods. I'm on a low dosage of apo-morphine and only take it during the day and early evening (about 12 hours a day). The net result is my head is clear and i function better now than at any time in the last few years.
Think about it titan, maybe you should consider asking your neuro about the apo pump?
best wishes
bluey
Ok I stand corrected - I had no idea there was a thread for the good stories - as people were posting them here I thought they had nowhere else to post them.
The emerald isle is cold wet and miserable - as usual lol We have had no summer and we are now heading back towards winter - which again will no doubt consist of heavy snow and temperatures of -20!! All I can say thank god for oil central heating and snow tyres
I was thrawling through the posts, again, trying to arm myself with all the information I can as I'm hoping to see X next week and get to the bottom of his medication, as he didn't seem to bad the last time I saw him, although there's every chance he will do a runner again, at this stage I take nothing for granted - it will be 2 years in November.
And although people's good stories are lovely - they have no bearing on my life whatsoever and are of no help to me, which is why I am on this thread and not the other one.
I would like to say that this forum and especially the information regarding the adverse side effects and people's experiences have been of great help to me. At the beginning when I met X and he told me he had been diagnosed with early onset parkinsons I tried to find out as much information I could about it. I read accounts from people who had the disease about how with medication they were living normal lives, still working and enjoying theirselves, and in not one of the personal accounts did it mention anything about the side effects of da's. Even at the time when they changed X's medication I did not understand how serious the situation would end up. As he had gambled on previous medication and this had been sorted I presumed this would also be sorted - little did I know that 2 years later the problem would still be ongoing. A personal account from someone who had suffered side effects would have meant I would have been forewarned and realised just how serious the situation could become. This may not be the face of parkinsons that people want advertised, but it is real and is affecting so many people that it needs to be addresssed.
Amy x
The emerald isle is cold wet and miserable - as usual lol We have had no summer and we are now heading back towards winter - which again will no doubt consist of heavy snow and temperatures of -20!! All I can say thank god for oil central heating and snow tyres
I was thrawling through the posts, again, trying to arm myself with all the information I can as I'm hoping to see X next week and get to the bottom of his medication, as he didn't seem to bad the last time I saw him, although there's every chance he will do a runner again, at this stage I take nothing for granted - it will be 2 years in November.
And although people's good stories are lovely - they have no bearing on my life whatsoever and are of no help to me, which is why I am on this thread and not the other one.
I would like to say that this forum and especially the information regarding the adverse side effects and people's experiences have been of great help to me. At the beginning when I met X and he told me he had been diagnosed with early onset parkinsons I tried to find out as much information I could about it. I read accounts from people who had the disease about how with medication they were living normal lives, still working and enjoying theirselves, and in not one of the personal accounts did it mention anything about the side effects of da's. Even at the time when they changed X's medication I did not understand how serious the situation would end up. As he had gambled on previous medication and this had been sorted I presumed this would also be sorted - little did I know that 2 years later the problem would still be ongoing. A personal account from someone who had suffered side effects would have meant I would have been forewarned and realised just how serious the situation could become. This may not be the face of parkinsons that people want advertised, but it is real and is affecting so many people that it needs to be addresssed.
Amy x
Titan thank you for your answer
.
[u]WHY ARE PD ORGANISATIONS KEEPING QUIET ABOUT THE DA/OCD ISSUE?[/u]
In any other field with 120,000 UK patients, if a new drug were to be introduced which suddenly proved to have a failure rate of 24% (28,800 of the above, equal to the population of Bicester), one would rightly expect major protests.
If it then transpired that these failures were in fact not just failures to treat symptoms, but had been demonstrated time and again (clinically and legally) to interfere with neuron activity in such a way as to turn normal, well-balanced adults into obsessional and compulsive maniacs attracted to various new pursuits, none of which they had ever considered indulging in previously, one would expect the protests to become a major political issue.
And if it further transpired that this new drug additionally removed from these individuals the ability to stop their obsessions, differentiate right from wrong or tell good from bad - even if they were vaguely aware that their actions were having disastrous effects on their families, finances or careers - there would be riots in the streets.
So why do third parties requesting PD information get bundles of leaflets and booklets, lists of internet links and downloads and charities' project plans which - if they mention OCDs at all - do so only cursorily? Why do the official HOME sections of this website gloss over the issue so lightly, and provide no statistics or details of the magnitude of the problem, or the scale of the resultant familial devastation?
Why doesn't PUK's Director of R&D, Dr Kieran Breen, climb onto the rooftops NOW, and announce to the country the newly published (Feb 2011) 24% failure rate - previously thought to be 15%, so 60% higher in real numbers? He's been in the media a lot over the last 7 months, but I've not seen him once reported as having announced the new, higher figure. WHY NOT? WHAT'S THE BIG SECRET?
THIS ISSUE IS MASSIVE. Far, far bigger than anything else currently on Steve Ford's agenda. Why isn't he gathering the troops and the coffers for a head-on, media-gathering charge at those who would - for whatever reason - keep this all out of the public eye.
As far as I'm aware the CEO's role covers (a) Research, and (b) Improving the lives of existing sufferers. So come on Steve, change your "(b)" priorities now, and HELP US. You have hundreds of members whose lives have been totally and utterly ripped apart and devastated by DAs. Hundreds more are currently suffering awfully from OCDs without even knowing why! Because no-one warned them, that's why. As we speak newbies are STILL joining the forum who have NEVER heard of DAs or OCDs.
FOR GOD'S SAKE DO SOMETHING REAL FOR US, NOW!
Ray.
.
[u]WHY ARE PD ORGANISATIONS KEEPING QUIET ABOUT THE DA/OCD ISSUE?[/u]
In any other field with 120,000 UK patients, if a new drug were to be introduced which suddenly proved to have a failure rate of 24% (28,800 of the above, equal to the population of Bicester), one would rightly expect major protests.
If it then transpired that these failures were in fact not just failures to treat symptoms, but had been demonstrated time and again (clinically and legally) to interfere with neuron activity in such a way as to turn normal, well-balanced adults into obsessional and compulsive maniacs attracted to various new pursuits, none of which they had ever considered indulging in previously, one would expect the protests to become a major political issue.
And if it further transpired that this new drug additionally removed from these individuals the ability to stop their obsessions, differentiate right from wrong or tell good from bad - even if they were vaguely aware that their actions were having disastrous effects on their families, finances or careers - there would be riots in the streets.
So why do third parties requesting PD information get bundles of leaflets and booklets, lists of internet links and downloads and charities' project plans which - if they mention OCDs at all - do so only cursorily? Why do the official HOME sections of this website gloss over the issue so lightly, and provide no statistics or details of the magnitude of the problem, or the scale of the resultant familial devastation?
Why doesn't PUK's Director of R&D, Dr Kieran Breen, climb onto the rooftops NOW, and announce to the country the newly published (Feb 2011) 24% failure rate - previously thought to be 15%, so 60% higher in real numbers? He's been in the media a lot over the last 7 months, but I've not seen him once reported as having announced the new, higher figure. WHY NOT? WHAT'S THE BIG SECRET?
THIS ISSUE IS MASSIVE. Far, far bigger than anything else currently on Steve Ford's agenda. Why isn't he gathering the troops and the coffers for a head-on, media-gathering charge at those who would - for whatever reason - keep this all out of the public eye.
As far as I'm aware the CEO's role covers (a) Research, and (b) Improving the lives of existing sufferers. So come on Steve, change your "(b)" priorities now, and HELP US. You have hundreds of members whose lives have been totally and utterly ripped apart and devastated by DAs. Hundreds more are currently suffering awfully from OCDs without even knowing why! Because no-one warned them, that's why. As we speak newbies are STILL joining the forum who have NEVER heard of DAs or OCDs.
FOR GOD'S SAKE DO SOMETHING REAL FOR US, NOW!
Ray.
.
.
Hi.
Thanks to Bluey for this excellent Canadian report in the class action against Permax for marketing, and thereby causing patients to ingest, a drug which subsequently caused them massive impulse control disorder problems.
The court appears to be leaing strongly towards the patients, and against the pharmaceutical company. Its final ruling will be in a couple of months.
Canada are way ahead of the UK in this process, so their outcome will have by then been ratified, and filed as an international precedent. This will thereafter be extremely difficult to rule against in any subsequent actions.
http://www.thomsonrogers.com/sites/default/files/settlement-notice-to-users-of-permax.pdf
Ray.
.
Hi.
Thanks to Bluey for this excellent Canadian report in the class action against Permax for marketing, and thereby causing patients to ingest, a drug which subsequently caused them massive impulse control disorder problems.
The court appears to be leaing strongly towards the patients, and against the pharmaceutical company. Its final ruling will be in a couple of months.
Canada are way ahead of the UK in this process, so their outcome will have by then been ratified, and filed as an international precedent. This will thereafter be extremely difficult to rule against in any subsequent actions.
http://www.thomsonrogers.com/sites/default/files/settlement-notice-to-users-of-permax.pdf
Ray.
.
Go Canada,
I'm moving to Toronto.
I'll worry about the SARS when I get there.
Anyway, to answer your question RoS.
How long does it take people to get compensated
a) thalidomide - Withdrawn 1961 - compensation level sorted out for survivors 2005
apology 2009
b) slopping out in Scottish Prisons - ÂŁ11 million paid out so far, extimated ÂŁ5 million to go after it was ruled you can still claim even if the claim is over the 5 year limit. Each receiving ÂŁ3000 on average.
I was also told by a lawyer "They dont like giving out legal against drug companies"
http://www.priceandslater.co.uk/latest_news/legal-aid-cuts-and-challenging-drug-companies.html
We're all going to hell in a hand cart.
Still they say you go to heaven for the climate and hell for the company.
I'm moving to Toronto.
I'll worry about the SARS when I get there.
Anyway, to answer your question RoS.
How long does it take people to get compensated
a) thalidomide - Withdrawn 1961 - compensation level sorted out for survivors 2005
apology 2009
b) slopping out in Scottish Prisons - ÂŁ11 million paid out so far, extimated ÂŁ5 million to go after it was ruled you can still claim even if the claim is over the 5 year limit. Each receiving ÂŁ3000 on average.
I was also told by a lawyer "They dont like giving out legal against drug companies"
http://www.priceandslater.co.uk/latest_news/legal-aid-cuts-and-challenging-drug-companies.html
We're all going to hell in a hand cart.
Still they say you go to heaven for the climate and hell for the company.
Sorry RoS you didn't ask a question.
Incidentally, fletching does have a 't' in it. It is a specialist practice.
It should be on the list, I can't count the hours I spent whittling arrows and trimming budgie feathers while on DA's (no thats not a euphemism either).
Incidentally, fletching does have a 't' in it. It is a specialist practice.
It should be on the list, I can't count the hours I spent whittling arrows and trimming budgie feathers while on DA's (no thats not a euphemism either).
Well said Ray, I'm sure that you speak for many of us. We are way behind other countries in terms of prosecutions for medical negligence ect. I get so peeved when I read of pwp getting compensated for their losses. I don't want reams of money, Id settle for my credit cards to be paid off, just so that I can hold my head high again. I know that I will lose my home in the next two years and I'm hanging by a thread. This just highlights that the ramifications of being on DA's for a number of years actually doesn't go away for us when we come off them. We are left with the fall out and I'm pretty sure that the stress will be the death of me.
I'm sure that there are many others in a similar situation........we need help NOW..
Glenchass
I'm sure that there are many others in a similar situation........we need help NOW..
Glenchass
[This post has been removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx ]
So far I'm aware cases where Drug Companies have settled out of court are in the USA, Canada, France, Australia and Italy.
I'm not aware if anyone has actually won the claim in court. The Drug Companies are very clever as well as sneaky, because if they think they going to lose in court, they make an offer to settle out of court. They know this limits any future liability on there part, as future claimant's cant make reference to out of court settlements.
Leigh Day & Co were supposed to be pulling together a class action lawsuit here in the UK. Does anyone know what's happening with it, is it going ahead?
I'm not aware if anyone has actually won the claim in court. The Drug Companies are very clever as well as sneaky, because if they think they going to lose in court, they make an offer to settle out of court. They know this limits any future liability on there part, as future claimant's cant make reference to out of court settlements.
Leigh Day & Co were supposed to be pulling together a class action lawsuit here in the UK. Does anyone know what's happening with it, is it going ahead?
Hi Blueeyes
I share the concern about the lack of action on the part of The Parkinson's society re OCDs and DA use.
Many letters to GlaxoSmithKline re my husband's horrendous experiences with RequipXL produced the reply that the leaflet warnings are adequate ( "OCDs are uncommon side effects in fewer than 1 in 1000 patients!"
and that the consultant stated that he provided adequate advice re behavioural issues. Tosh!
Leigh Day were very sympathetic when I phoned them and said their class action is still being finalised but is only dealing with compulsive gamblers.
Evidently it is necessary to chart the loss of money against the rise in dose and hypersexuality cannot be proven to create a financial loss.
They sent me a questionnaire for all claimants and said they would consider sueing the consultant for us but we couldn't afford to lose and it is his word against ours that we were never told or warned of the dangers of OCDs.
Ray was the first person to tell us about them.
Try ringing them. I g00gled them for the number but have lost it.Good luck!
X
I share the concern about the lack of action on the part of The Parkinson's society re OCDs and DA use.
Many letters to GlaxoSmithKline re my husband's horrendous experiences with RequipXL produced the reply that the leaflet warnings are adequate ( "OCDs are uncommon side effects in fewer than 1 in 1000 patients!"
and that the consultant stated that he provided adequate advice re behavioural issues. Tosh!
Leigh Day were very sympathetic when I phoned them and said their class action is still being finalised but is only dealing with compulsive gamblers.
Evidently it is necessary to chart the loss of money against the rise in dose and hypersexuality cannot be proven to create a financial loss.
They sent me a questionnaire for all claimants and said they would consider sueing the consultant for us but we couldn't afford to lose and it is his word against ours that we were never told or warned of the dangers of OCDs.
Ray was the first person to tell us about them.
Try ringing them. I g00gled them for the number but have lost it.Good luck!
X
Hi
Sorry but I have a gripe and Iâm really annoyed and I have to say something.
I read somewhere - I canât find it at the moment but I will - that all this talk about the adverse reactions to daâs is scaremongering which has annoyed me greatly.
I met a man with early onset parkinsons, diagnosed at 43. He was the most gorgeous amazing sexy man I had ever set eyes on. He was confident, funny, interesting and I enjoyed his company Yes he did have parkinsons which he told me upfront; he had a tremor in his left arm he was tired and had trouble sleeping, and suffered from depression amongst other things, but his parkinsons symptoms in no way deterred from the man he was. Over the next year and a half he turned out to be the most kindest, sweetest softest sexiest man I had ever met and I loved him. I was dreaming about spending the rest of my life with him. He used to say if we had another ten good years together with his parkinsons then we would be lucky, but that we would grow old and infirm together and this thought made me warm inside . This was no fairy tale we both knew what lay ahead, he had had problems with medication previously and had gambled and he was scared of what the future held.
In November 2009 they changed his medication.
He changed hospitals and it was his first appointment at the new hospital they had never seen him before. He became abusive, nasty, hurtful, spiteful and paranoid and didnât make any sense, he changed sexually and he ran away from home and wouldnât give me his new address and started playing golf 24/7. He had no feelings and no emotions and lied about everything. I tried to get him to change his medication but he said there was nothing wrong with him and said that it was me who had the problem not him. I rang the hospital and begged them for help, I told them how he was acting and how he had a permanent erection and had changed sexually from a considerate gentle lover to someone who only pleased himself and was into sex sites on the computer, but they said they were sure he had a reason for everything he was doing and it was nothing to do with the new medication, although they did admit they had noticed how much golf he was playing and would ask him about this at his next appointment, although they said they could not change his medication unless he asked them to - which I still donât understand because it was them who changed it in the first place. His next appointment was in six months time at which he told them he played golf because he enjoyed it and it was good for his parkinsons, they accepted what he said and gave him another prescription for the same drugs, the drug was requip modutab. On the occasions he met me it was like he was plugged into the electric socket he was so wired and his eyes were glazed over. At one such meeting he told me he didn't love me anymore, that he had never loved me and wanted nothing more to do with me, I walked out in floods of tears and when I got to my car he rang me to ask me why I had left, that he had been looking forward to seeing me and didn't know why I wouldn't stay and talk. He would ring me every day / night, sometimes telling me how much he still loved me and missed me, sometimes about how his new girlfriend was better at sex than me, sometimes he would cry to me, sometimes he would just shout abuse down the phone at me, once we had a conversation about sheep. If I rang him he would scream at me to leave him alone. There came a point where I had to accept there was nothing more I could do, that the man I once knew did not exist anymore, this was in September 2010.
He rang me about a month ago and I met him, he looks older and he is more stooped and shuffles more now - which made me want to put my arms around him and love him. He said he has changed his medication . I cannot explain how much I had wished for this day, I had wanted it so much I had not allowed myself to dream about it. And there were bits of the man I had loved. He told me how he now realised what the drugs had done. He told me that he still and always had loved me, how I had always been in his heart and there were things he regretted. We had a nice talk and he answered all my questions and the answers seemed to make sense, he did not loose the plot of the conversation and was not nasty or wicked or hurtful to me. He said he knew he had broken my heart and asked me if I could ever love him again. I had my dream in front of me waiting for me to reach out and take it but I didnât.
I will never be able to believe him again. I will never know whatâs real and whatâs not. I will never know whether he has the plot or not, I will never know when what happened will happen again. I will spend my time watching him and scrutinising everything he is doing and saying for signs of him losing his mind again. I will never know whether he really does love me or whether he ever did because I cannot ask him because I cannot believe anything he now says to me.
This is not scaremongering this is a true factual personal account of my experience with a man who has parkinsons and how a change in medication affected my life, and I am not the only one that this has happened to. Also telling me that I am only the 1 in 4, or whatever the statistic being quoted at the moment is does not make my hurt any less.
I donât know what the future holds I am going to try to meet him next week and talk to him but - I cannot honestly see how the damage done can be repaired.
Amy
Sorry but I have a gripe and Iâm really annoyed and I have to say something.
I read somewhere - I canât find it at the moment but I will - that all this talk about the adverse reactions to daâs is scaremongering which has annoyed me greatly.
I met a man with early onset parkinsons, diagnosed at 43. He was the most gorgeous amazing sexy man I had ever set eyes on
. He was confident, funny, interesting and I enjoyed his company Yes he did have parkinsons which he told me upfront; he had a tremor in his left arm he was tired and had trouble sleeping, and suffered from depression amongst other things, but his parkinsons symptoms in no way deterred from the man he was. Over the next year and a half he turned out to be the most kindest, sweetest softest sexiest man I had ever met and I loved him. I was dreaming about spending the rest of my life with him. He used to say if we had another ten good years together with his parkinsons then we would be lucky, but that we would grow old and infirm together and this thought made me warm inside . This was no fairy tale we both knew what lay ahead, he had had problems with medication previously and had gambled and he was scared of what the future held.In November 2009 they changed his medication.
He changed hospitals and it was his first appointment at the new hospital they had never seen him before. He became abusive, nasty, hurtful, spiteful and paranoid and didnât make any sense, he changed sexually and he ran away from home and wouldnât give me his new address and started playing golf 24/7. He had no feelings and no emotions and lied about everything. I tried to get him to change his medication but he said there was nothing wrong with him and said that it was me who had the problem not him. I rang the hospital and begged them for help, I told them how he was acting and how he had a permanent erection and had changed sexually from a considerate gentle lover to someone who only pleased himself and was into sex sites on the computer, but they said they were sure he had a reason for everything he was doing and it was nothing to do with the new medication, although they did admit they had noticed how much golf he was playing and would ask him about this at his next appointment, although they said they could not change his medication unless he asked them to - which I still donât understand because it was them who changed it in the first place. His next appointment was in six months time at which he told them he played golf because he enjoyed it and it was good for his parkinsons, they accepted what he said and gave him another prescription for the same drugs, the drug was requip modutab. On the occasions he met me it was like he was plugged into the electric socket he was so wired and his eyes were glazed over. At one such meeting he told me he didn't love me anymore, that he had never loved me and wanted nothing more to do with me, I walked out in floods of tears and when I got to my car he rang me to ask me why I had left, that he had been looking forward to seeing me and didn't know why I wouldn't stay and talk. He would ring me every day / night, sometimes telling me how much he still loved me and missed me, sometimes about how his new girlfriend was better at sex than me, sometimes he would cry to me, sometimes he would just shout abuse down the phone at me, once we had a conversation about sheep. If I rang him he would scream at me to leave him alone. There came a point where I had to accept there was nothing more I could do, that the man I once knew did not exist anymore, this was in September 2010.
He rang me about a month ago and I met him, he looks older and he is more stooped and shuffles more now - which made me want to put my arms around him and love him. He said he has changed his medication . I cannot explain how much I had wished for this day, I had wanted it so much I had not allowed myself to dream about it. And there were bits of the man I had loved. He told me how he now realised what the drugs had done. He told me that he still and always had loved me, how I had always been in his heart and there were things he regretted. We had a nice talk and he answered all my questions and the answers seemed to make sense, he did not loose the plot of the conversation and was not nasty or wicked or hurtful to me. He said he knew he had broken my heart and asked me if I could ever love him again. I had my dream in front of me waiting for me to reach out and take it but I didnât.
I will never be able to believe him again. I will never know whatâs real and whatâs not. I will never know whether he has the plot or not, I will never know when what happened will happen again. I will spend my time watching him and scrutinising everything he is doing and saying for signs of him losing his mind again. I will never know whether he really does love me or whether he ever did because I cannot ask him because I cannot believe anything he now says to me.
This is not scaremongering this is a true factual personal account of my experience with a man who has parkinsons and how a change in medication affected my life, and I am not the only one that this has happened to. Also telling me that I am only the 1 in 4, or whatever the statistic being quoted at the moment is does not make my hurt any less.
I donât know what the future holds I am going to try to meet him next week and talk to him but - I cannot honestly see how the damage done can be repaired.
Amy
Hi, Amy. I think what you're looking for is on page 2 of the "Taking DA's and feeling the benefits" thread, posted by spam95 at 19:58 on 2nd Sept 2011.
Ray.
Ray.
Spam95.
All of us OCD sufferers can accept that we comprise the unlucky 24%, and that you form the remaining lucky 76% for whom DAs are the best thing since pickled walnuts.
We can also concede that WHILST under the reign of our DAs our own mobility often improved significantly, even though our brains were being turned into an inneffective pulp. So why do you have such a problem believing that the hell experienced by the 24% is as awful as we describe? Why on Earth would we lie?
[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx ]
All of us OCD sufferers can accept that we comprise the unlucky 24%, and that you form the remaining lucky 76% for whom DAs are the best thing since pickled walnuts.
We can also concede that WHILST under the reign of our DAs our own mobility often improved significantly, even though our brains were being turned into an inneffective pulp. So why do you have such a problem believing that the hell experienced by the 24% is as awful as we describe? Why on Earth would we lie?
[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx ]