Happy birthday golden girl xx
I know this is a day late GG but happy birthday. You are my twin as I also have my birthday on Feb 19th but I was 73 this year. I don`t feel anything like that age and hope I shall be saying that for many years to come.
Hope you had a good day.
Hattie
Thank you Gus, Bettyblue and Hattie!
I do hope you had a lovely day too, Hattie my twin, and that we all have a good year, hopefully with better drugs and hope for the future.
Love
GG
HAPPY TO YOU HATTIE
Billywhizz
HI and best belated wishes to you both,
Well after typing away for sometime I suddenly lots everything, drives me mad. I too am 70 this year but I must say the body is worn out, it could be that I have been in constant pain since I did my back in, way back in 1976 and although had a spinal fusion I have had to use a wheelchair since. I keep going by having a hoist in the car to get the wheelchair in and out and swim twice a week when I can, hasn't stopped me putting on weight no matter how hard I try to keep it off, I have ended up just the same shape as my mum who ate everything she liked, I wishes I had enjoyed all the cakes and choc's instead of being good!! My friends are always surprised when I tell them my age which is something I suppose and I do like show's like "That'll be the Day" when I can get a wheelchair space which is a struggle with so few available, but if you like 60' music and acting like a teenager again they gift you a real lift. I do agree with everything you say Golden Girl we were never told about the drugs either but my husband is on hourly tablets and has been for several years now as that is the only way his body seems to work and he gets fed up, he takes them from 6 am through to 10pm.
Most of you will know about low blood pressure with PD but as you progress I would advise you to be extra careful as my husband's BP drops to 70/40 sometimes and just lately it has had several times in a matter of minutes, of course you have to get them on the bed or somewhere where you can get the head down and legs up, it only lasts a short time and people don't pass out but our consultant calls them a "Grey out's" and they can hear you but can't talk back to you, their eyes are open and you can easily miss it but I usually can tell when I lift his arm it's floppy. You don't need to rush off to hospital and be put on a drip as one Doctor wanted to do but you do need to keep a close check as it can lead to a cardiac arrest. Please all don't go into a panic I just think it's better to be aware than frightened and not know what to do. Our son is moving to be nearer work so will be just over an hour away from me and my husband is an hour in the other direction so that will be something to get used to but I have told him he must get on with his life. I hope you all have a good week. Best wishes Vivian
Sorry Folks it look like I shall have to edit my posts, I am just afraid to hit a key in case i lose the lot again, I should get some coaching on using the computer
Hi goldengirl,
Firstly, we hope you had a good birthday.
We’re sorry you feel that action was not taken promptly enough though as you know, the issues involved in a case like this are complex. And there are further issues around mounting a group litigation order (class actions do not exist in the UK). For those of you interested in the legal situation, we held a Q&A session on the law and impulsive and compulsive behaviour in November 2013 that helps to explain the issues.
Best wishes,
Suma, Professional Engagement and Education Manager
There was plenty of information available to health professionals and on the Internet years before the Q and A session 2013, Suma,
In 2010 The Mayo Clinic published research showing that about 1 in 3 patients on a therapeutic dose of Dopamine Agonists suffered new OCDs mainly gambling and hypersexuality.
1 in 3 men under 50 suffered these catastrophic OCDs.
The link between DAs and OCDs was there for interested parties to find for many years prior to this major report. .PDUK should have been aware and alerting patients to the dangers.
After GSK were forced to add warnings to their leaflets in 2006 PDUK made no effort to warn patients and it was years before growing stories of ruined lives on the Forum and contact with the Helpline forced them to begin a campaign highlighting the catastrophe.
The Q and A session in 2013 was a complete waste of time....too late for legal to be taken whatever the patient's situation.
Legal action has to be started within 3 years of finding out the cause of the damage.
If you took the meds after the warnings appeared in 2006 then you were deemed to have known about and accepted the risk.
So, no possible action by 2013. This is what the Q and A session concluded.
There may not be a lawsuit termed a class action in the UK but firms can and do act on behalf of a group of people. PDUK could have been proactive post the 2006 warning, in liaising with the damaged patients and a legal firm such as Leigh Day without being involved in any expense...just time.
In our ignorance, we saw a neurologist privately in 2000 and after diagnosis saw him only. We did not know a Parkinsons Nurse existed. We joined PDUK in 2000 and received the magazine. We did not realise the Forum existed and until 2010 used the computer very little. Most people of our age were slow in becoming computer savvy.
Our only knowledge of Parkinsons came from these sources and neither ever mentioned DAs and OCDs. . Pre 2010.We struggled to understand what was happening as our world was destroyed by these drugs.. Our whole life crumbling in 2010 led us to the Parkinsons Nurse and from her the knowledge about DAs and OCDs.
I cannot be alone in feeling utterly let down by PDUK and left to assume that drug company funding prevented any boat-rocking until it was too late to take action which would harm the profits of the greedy companies for whom money is more important than morality.
Yes , Suma, I did have a happy birthday surrounded by good friends and a loving family.
But they cannot undo the horrors of the past, or restore our lost savings, or our ruined marriage.
PDUK could have played a role in preventing the destruction, for us and many others, but failed to do so?
GG
To illustrate my post below,
For example, did PDUK notice this going on in 2008 and discuss whether or not to highlight it in the magazine to alert DA users?
Did they research whether DAs in general were creating massive problems for patients in the UK? Because by this time, they were!
If not, what were they doing? Surely part of their brief is to keep abreast of PD drug problems and keep patients safe?
Why did it take 5 more years before they held a Q and A session on the Forum, by which time no legal action was possible?
GG
Hi goldengirl,
I can see that you feel very frustrated at what actions were taken. I started at Parkinson's UK in 2012 and so it is very difficult for me personally to comment on what happened beforehand. However I can tell you that it did take some time to find any solicitors to agree to take part in a Q&A session hence why this only took place in late 2013.
I will try to find out more about the other points you've raised - please bear with me as this might take some time.
Suma
Hi Suma,
Thank you for replying and offering to look at PDUK's past actions.
I know you were not in post during the years PDUK failed to publicise the growing Da/OCD situation.
Could I just correct my long post....Mayo Clinic figures in 2010 were 1 in 2 of men under under 50 suffer catastrophic impulse control disorders when taking a therapeutic dose of DAs.
Hardly a small problem!
I look forward to a more complete reply in time..GG
Dear goldengirl,
Thank you for your patience whilst I’ve been talking to colleagues. As you might appreciate, there are not many staff members who were around ten years ago but I hope I have managed to unearth as much organisational knowledge as possible. I’m going to try and convey what has been found as comprehensively as possible with explanations of some things you no doubt already know about, however I hope this response will help those who might not be as knowledgeable as you.
It seems that some links between gambling and Parkinson’s were highlighted in The Parkinson magazine in 2005. However at that time, there was a bit of confusion within wider clinical knowledge as to whether side-effects such as this were due to people taking more than is required to manage their symptoms (also known as dopamine dysregulation syndrome) or whether they occurred at normal therapeutic doses. Before we can do any widescale awareness raising activity, we need to ensure we are in possession of as much factual information as possible and it seems that at that time, it was not there. So we could only deal with cases on an individual basis as people approached us for support. However the evidence base for this started to grow more robustly from 2007/8 and consequently in 2008 we became in a position to start talking about this more widely, including being involved in programmes such as Newsnight and This Morning (both of which equated to unprecedented media coverage for us back then) and another more comprehensive article in The Parkinson. Since then, this has become a priority for the charity and there has been an enormous increase in our activity on impulsive and compulsive behaviours from funding research projects, creating a specific area on the forum and producing information resources for both people affected by Parkinson’s and professionals (including the monitoring form).
So it appears that as the available knowledge and understanding was not where we needed it to be, we were limited as to what we could proactively do. I don’t mean for this to sound like an excuse, but it doesn’t seem that we had the capacity to do anything more than we did then. We have definitely grown as an organisation and I would like to think that when issues come up, such as the problems accessing Amandatine last year, we are now in a position to raise awareness more widely and more effectively.
I appreciate that all of this may be cold comfort to those of you whose lives have been so damaged by impulsive and compulsive behaviour. I hope you feel that the work that we have undertaken in recent years has been in the right direction and has made a difference. Through the newly formed Excellence Network, we will continue to raise awareness with clinicians as to their responsibilities in providing treatment that won’t devastate the lives of their patients and those around them so that what happened to you and your husband doesn’t happen to others.
Kind regards,
Suma
Thank you Suma for taking the time to look at the response of PDUK to the DA/OCD situation.
I hope that in the future PDUK will respond more effectively to PWP who are suffering mentally or physically because of lack of support , information or advocacy, rather than handwringing and offering platitudes.
I do, however, feel that the communication has improved a great deal over the last few years and staff, including you, Suma, have listened and responded in a much more positive manner.
I look forward to seeing how the Anti-depressant and Azilect problem is resolved.
With thanks for your efforts to involve and support us.
GG
I wonder what happened to all the PWP who posted so often on the forum sharing their experiences, often life-destroying, of DAs/OCDs.
Most of them eventually stopped posting, presumably in response to the lack of involvement of PDUK and the bullying of those who doubted their plight was as a result of the DAs and felt they were responsible for the demented. behaviour.These doubters felt that discussion of these devastating side effects might mean their own access to these drugs would be restricted.
Where are you all now, the wonderful people who educated ,supported and cared for me when I was in such distress?
Glenchass, Company Pleasant, Blueeyes...and many others.
I remain in touch with Ray of Sunshine's family as he battles ever-worsening health .
I wish that the forum had offered them the support they gave me and that they could post now and find a better-informed and compassionate welcome.
GG
Hello Goldengirl.
I was one of the people who posted when my husband was having terrible obsessive compulsive behaviour due to Mirapexin. The forum was a help to me - just by helping me realise I was not in this awful situation alone and that I wasn't going mad. I seem to remember that we had quite similar experiences with both of our husbands and that we emailed each other privately at the time.
I would like to say that things have improved for us but that would not be the truth. Obviously the behaviours stopped once the DA's were stopped (although the coming off period was dreadful) but our marriage has not recovered. Let's just say we are still together. I care for him and he lets me care for him. It is very sad but all the things that happened have ruined our lives.
One good thing is that there are hardly any people on the forum now with the problems that we had - if anything the professionals are overly cautious about the DA's and side effects. If only we had been warned - how different our lives might have been.
I remember that Ray of Sunshine was in the process of writing a book about his experiences but I know that he was struggling with his health at the same time. What a shame that it never got published and made people aware of the awful side effects of these medications and the damage that they did to so many people and their families. Having said that, there will always be people who don't believe but that is up to them. Why would anyone want to make up the awful time we went through? I would give anything for it not to have happened and to be able to forget it all.
Thank you for keeping the subject going - it would be too easy for it to be just swept under the carpet and pretend it never happened. For people like you and I, and many others, it was a living nightmare.
Best wishes to you and your husband.
LL x
How lovely to hear from you, Libra Lady!
You were a great comfort to me in letting me know I was not alone in the nightmare.
Our life is much like yours.
We manage to live together with all the terrible memories gnawing away at the efforts to find trust again.
We still stumble across medical staff who are oblivious to the DA/OCD situation and occasionally a new victim appears on the forum.
There will never be anyone admitting they played a part in damaging so many lives and saying they are sorry.
But just maybe, after all the Hillsborough families have finally been absolved of causing the dreadful situation.Maybe the drug companies will admit their guilt one day.
Love to you and your husband.
GG
I was just looking back on posts from 2011 when pressure from victims was forcing PDUK to respond to the desperation of PWP.
This is a 2011 post and I wonder how much progress was made in each if the areas?
Posts from Blue-eyes faded away, we never heard of contact with the drug companies, a Q and A session in 2014 about the legal situation merely confirmed that no legal action was possible in the UK as time had run out.
We still find professionals in the PD field unaware of the DA/OCD devastation and some patients are still not being warned and monitored.
Have the leaflets in DAs been altered to change the statistic to 1 in 4 of patients on a therapeutic dose will suffer these side effects, or is it still 1 in a 1000 as it was in 2010 when I last saw a packet?
Is anyone ever going to apologise and take responsibility for our ruined lives?
GG
hi glenchass and Ray,
I can reassure you the recruitment of a Campaign Officer is most definitely happening. I spent last Thursday and Friday at PUK's offices doing just that. I am very involved in the selection process to find a suitable candidate, along with getting the role up and running within PUK. The selection process is almost complete and i should be able to give everyone a full update next week.
Also there is a second ICD/OCD steering group meeting being held this Friday in London. I shall be presenting my proposals at this meeting as to what the campaign needs to focus on! In essence the plan is to focus of 3 key objectives,
1) Greater awareness of OCD side effects amongst all health professionals who prescribe PD medication and in particular DA's.
2) Bring the pharmaceutical companies to the table and getting them to start playing ball so to speak! For example, i want them to pay for any new training or educational materials we may require, and to update there info leaflets and websites with relevant and up to date info regarding OCD side effects. Will this be a big challenge, you bet it will! However i spent 30 years of my working life negotiating with some of the biggest manufactures in the world, so i got a few things up my sleeve when it comes to knowing which levers to pull.
3) Create a NEW dedicated support unit at PUK to give expert advise to people affected by this issue and provide ongoing help and support for those coping with the aftermath of OCD side effects. I shall go in to more detail on this over the coming weeks.
Must sign off now need to take my meds, hopefully this reassures you both.
regards
bluey
Is pramipexol one of these drugs?
BB
Yes, Betty.
It is a dopamine Agonist as far as I know.
If you are taking it, you need to be are of the dangers and make sure someone you trust watches out for signs of compulsive behaviour.
The victim remains unaware that their behaviour is abnormal and lies to cover up.
Part of the thrill is getting away with it , be it sexual behaviour, gambling, shopping, Internet use....etc.
Take care.
Love
Gzg
yeah pramipexol was a bad one for me gg ,online virtal gambling in the early hours of the morning where the pd drugs would not let me sleep i was on the web ,only reason came to light is they had a big thing 8yrs ago on pd drugs compulsive behaviour was in nero consultants rm with my wife & he asked my wife any unusual behaviour my wife replied just bought 50" tv then it all came out 20.000 g later !