Dopamine Dysregulation Syndrome

Dear Annie M,

Don't let them refuse referring you, tell them you have a right and of your fears for both you and your husband.
I remember saying to this other lady I spoke of when the consultant refused to listen to her and stop her husband driving when she knew he had been driving at 90miles an hour and fell asleep only just waking in time to stop before hitting a car, I said ask him to put it in writing that he felt the husband could still drive and I bet he won't. When she went to see his psychiatrists she mentioned she had seen me and we talked and he said he could do nothing and to come back and see me, talk about buck passing.
Years ago when my husband insisted on walking out late at night I spoke to our local bobby on the beat and explained to him I was concerned that if they stopped him and wondered what he was doing out so late he might get a bit awkward and the police just said that if you can get him to carry a card explaining he had PD that would be really helpful.
If you don't get anywhere ring the helpline or ring the pd nurse if you have one,
this is exactly what I get so frustrated about and have spoken to national office people about it as this is the real world of pwp's and their families not everyone I know but enough as you can see from reading the forum.
This sort of thing can't go on!!!!
best wishes
vivian
Ps I know how hard it is to carry on and sometimes it is just a step too far but I hope you have a good outcome, other on here have come through it.
Love vivian
I am so sorry Annie that you are finding it so hard to access the help you and your husband so badly need.
Titan refers to us as "outsiders looking in" but it is hard to explain the pain of seeing your life crumble as yoy watch a loved one become a stranger , surrounded by a marriage breaking down and family and friends bewildered and rejected.
Our consultant also refused to accept the DAs were to blame and it was the Parkinson's Nurse who fought for us to get the psychological help we both needed and the medical help to get him off the drugs and onto Sinemet.
Don't give up .Vivian is right.
There is help out there. Try the PDUK helpline. Go back to the GP. I wish you all the luck in the world.
The drugs have control of your husband. He is still there and he can return with the right help and support.
Love
GG
Thank you Vivian and goldengirl for taking the time to reply. It is the first time in a few months that I have felt encouraged to try again to get help. I will ring the PDUK helpline and talk to someone.
I didn't understand titan's comment about "outsiders" so thank you goldengirl for explaining that. I can understand that it must be very frustrating for a pwp to hear partners and spouses bemoaning their lot when it isn't them that has the condition, and I don't minimise in anyway what they go through on a daily basis. It hurts deeply to see a loved one unable to do the "normal" things in life but I suppose I just want someone to acknowledge what I have lost as well - the man I love and the contented life we had planned together.
So thank you both for sharing your experiences. I feel very supported.
Annie
Hello Annie,

I am so glad that you feel more supported as this is what the forum is all about, Carer's should not feel they have to be quiet about how they feel it is an illness that encompasses all the family.
My poor husband has now become aggressive to the carer's (he has had pd for 30 years) and I really don't know where all this will end as there are not the care homes who can manage this type of problem, if he had dementia there are plenty because he is quite good mentally although he doesn't understand why he is like this there are not the places trained for what I call the inbetweeners.
I do hope you can some help, don't let them put you off.
best wishes
vivian
Hi Annie
The fact that you have taken time and courage to post your concerns here shows that you care. You are in no way an outsider and neither is anyone in your position. I know from my own experience since dx 8 years ago that dopamine agonist side effects can be very difficult to deal with

I have been on a journey with requip/ropinirole up to 18mg and back to zero. I reduced the dose slowly after discussion with my neuro. At each stage of the reduction my thinking was transformed. Each stage, including the last one, felt like taking a mask off or coming out of a dark room into the light.

The carers/partners of PWP are critically important people, they share the experience at every step of the way. On some aspects of life with Parkinson's they are better placed to comment than the PWP.
Do not lose hope.

Elegant Fowl
Hello all,

Annie I have had pd for 12 years now and financially broke us whilst taking Requip/ Ropinerol. We are still reeling from the effects and it's looking like we will finally loose our home next year as a direct result. It's amazing how devious we become whilst taking the drug and we will do almost anything not to be stopped. I understand how hard it must be for you to forgive your husband but it really isn't his fault. I really don't know how my husband coped during the 3/4 years that I took the DA's and there are times I feel dreadfully guilty because the devastation of our lives was ultimately down to my behaviors.

It's is very important for you and your hubby to know that you are not alone in this and should he need to talk about his experiences, I would be more than happy for him to contact me, take care.

I wondered how people feel after hearing the news about the chap in France who has won his case? Whilst reading it I felt very angry that we do not appear to be listened to in this country with regard to this issue and I really do feel that Parkinson's Uk should be helping us more to move this issue forward and to get it into the Court system.

I would be more than happy to join forces and fight this as a group, we are just sitting back whilst others are fighting for their rights. Leigh Day solicitors told me I was too late to try to claim, however the gent in France was using Requip/Ropinerole at the same time that I was. i wonder would the fact that we and France are part of the European Union have any effect on this matter, as we are surely supposed to share the same rights?

Please feel free to comment as I value all of your thoughts.

glenchass
Hi Vivian,
It must be so difficult for you worrying about you husband's care nd not knowing what the future holds for him (and yourself.) I hope he gets the care he really needs. I'm glad that PDUK are trying to "get it out there" what having Parkinsons REALLY means as most people seem to think you either just move very slowly or shake lot!

Elegant Fowl, thank you for your encouraging words. I am very impressed that you managed to get the requip down to zero after being up to 18mg. What were the physical effects of this for you, and did you replace it with any other medication? Did it take a long time to get of them?
Sorry for all the questions but it's the first time I've heard of anyone coming off requip. It's difficult to assess what effect of reducing them is having on my OH as he is secretive about his impulsive behaviour and has lied to me frequently to cover his tracks. Sometimes I wonder if he really is cutting them down.
Thank goodness you were able to see you had a problem. Did you make the decision yourself to come off requip (with you neuro's support) or were you persuaded
by someone else?
Regards,
Annie
Hi,
I've not quite got the hang of posting - I've just been typing for 20 minutes and somehow it's disappeared into the atmosphere. So here goes again...

Glenchass.
I was so sad to hear your story and the possibility that you may lose your home. I hope that someone has given you the best advice on how to deal with your debtors and that the doesn't turn into a reality for you. I would have loved to take you up on your kind offer as a listening ear for my OH, but he doesn't really recognise that what he does is a problem. He does gamble but as far as I know (and I do check) he doesn't bet more than he can afford to lose. He is a compulsive eater and eats sweets, cakes and biscuits all day long, as well as his normal meals and spends hundreds of pounds on his hobby, there is always a parcel arriving in the mail.
This, however, is all manageable, but it is the hypersexuality, cross dressing, exhibitionism, totally inappropriate and incessant porn watching and gay tendencies, that I can't come to terms with. He says other women would put up with it and so he makes it my problem.
You see, now you've all got me talking, I can't stop!

I hope that all the publicity around DA's will stop others ending up where we are now, but somehow I doubt it, as we all know that professionals have known about the side effects for many years. We were warned to watch out for gambling tendencies but no mention of the rest of it.

As has been suggested it would be very interesting to have a lawyer who understand European law to explain why France allows litigation over this issue and England doesn't.

Thank you all,
Annie
Hi all,

Just to let you know I'm made a post that might be of interest under the topic 'Statement about court ruling in France'.

Kind regards,

Suma
Good morning. I am new to the forum I was diagnosed 2003 and latter got involved
in fraudulent actively became hop sexual and spent 7 months in prison.
On looking at the forum notes I see we were to get counsel view on time limits, a meeting with M Melcher MP, Leigh Day to draft a report in what was required to bring a claim.
Now we have this French judgement I doubt GSK would want bad press again, so soon after their £18 billion fine in tho USA / Canada. I believe their actions have tainted all of their world wide operations and clouding UK as well.
We need a counsel to make a claim on our behalf by way of class action and try mediation to see if we can narrow issues between us. This would be more cost and effective way in bringing about a consistent approach do all claims
Regarding Leigh Day comments about continued use of the drug all I can say is GSK in effect lied about the drug because they said the drug fully tested when it clearly was not GSK should have drawn these unusual side effects to their patients which they did not do Regards
Good morning, my note yesterday needs updating . I agree with the comments of counsel regarding GSK. All they did was to put a reference about these side effects on the back page on to information sheet.This was not enough The side effects are so unusual they should have been drawn to the patients attention at the start of using these drugs and also at the start of a continuation treatment program
If we are to consider a class action claim we will need to collect as much evidence as possible.
Regarding limitqation normally 3 years from accident datebut you have 3 years after you first beacame aware that you may have claim to date
So, we have a company who not for the first time have not been tuthfull about. a new drug and its side effects. Their failure destroyed many peoples lives. Had they told us when appropriate this could have been avoided. Regards
Mr W , I am so sorry to hear that you ended up in prison as a result of the drug companies' greed.
We do need to sort out a few bits and pieces first.
I am sure I read that dopamine dysregulation syndrome is when the patient needs more and more of the DA drug, as an addiction.
I am not sure that that is the same as obsessive/compulsive disorder or the newer term impulse control disorder which refers to the carastrophic side effects of DAs usually gambling or hypersexuality.Perhaps we need to post in the compulsive behaviour thread and keep it together.
I, like you find it difficult to understand why PDUK do not take a lead role in confronting the drug companies.
We are not asking them to foot the bill for litigation but to co-ordinate a class action.
They need to respond to the call for a legal statement of what the conditions are to sue and to find a legal team to lead a class action.
In America it began with a huge advert in a daily paper asking people to come forward if they had taken the drug and suffered these side effects.
They took it forward from there and achieved a massive settlement.
I e-mailed the law firm and they said they couldn't understand why no-one in the UK would take this on, but they couldn't go to court in this country for us.
PDUK have been aware of this state of affairs for years but endlessly promise "support"
A sympathetic ear on a helpline and a few handouts for professionals does not make much of a dint in the ruined lives and finances.
I found it hard to understand Leigh Day's stance that the drug company had not lied in stating that these side effects were very uncommon when The Mayo Clinic found 1 in 3 on a therapeutic dose suffered devastating OCDs and 1 in 2 of men under 50.
Why are Americans compensated and even 1 Frenchman but not 1 in the UK?
Come on PDUK! We need your help.
GG
Hi all,

Even if there is a clear distinction I had already wondered if in some cases the PWP had ended up on the amazingly high doses we sometimes hear of because they had somehow persuaded the neuro that nothing but a higher dose of what they were on would help them in symptoms which they may have exaggerated to get what they want. Of course, neuros might be insulted by this suggestion but given the known deviousness of addicts and the short appointment times isn't it possible?
I agree with GG regarding parkinsons uk, I too feel let down by them, they are supposed to support and advise but they seem to prefer to print warnings about the side effects without helping those who's lives are already destroyed by this drug.

Although I stopped taking the requip in 2006 I didn't find out until I didn't find out about the side effects until a few years ago when I joined this site. I did contact Leigh Day solicitors some years ago and told to wait to see the outcome of the cases that they were working on. This took me over my 3 years and I feel that it just isn't fair, there were no warnings at all when I was taking the DA's. I'm about to loose my home as a result of this and I simply cannot let it go. If we are in Europe then we should be able to take this to the European Court and fight for the same rights as the French people. We have sat back for far too long and accepted what we have been told, I'm certainly ready for action and I am sure if we go the media and make a fuss somebody will have to take notice, perhaps we should also mention Puk's lack of support on the issue too.

Whys has nobody answered Golden Girls question about Blue eyes update to us all, that seems to have taken a huge backseat...it's all very well backing cycling. kalimanjaro, runs ect ect but what about supporting this issue?

We have lost good people like Ray of Sunshine and others and I believe it is due to the lack of support.

I'm sorry for the rant but when your about to loose the last thing that you have...my home...I think I'm entitled to have a very strong opinion!!

glenchass
hi goldengirl,glenchass and others

Don't worry I'm still around and on the case. Here is the update goldengirl that you've been asking for.

I totally agree with the vast majority of what is being said and also share your frustration.

The recent campaign did raise the profile of impulsive/compulsive behaviour side effects among health professionals, that i can say for certain. Significant steps were made in terms of providing better education and patient monitoring toolkits for professionals. We also updated and improved side effect information and ease of access to that info via the website, including this dedicated section on the forum. In addition we got drug companies to come to the table for the first time and support Parkinson's UK with the raising awareness campaign. Plus at last we how have in Suma, a F/T person at PUK who is focusing on raising awareness of this issue among health experts.

However all that said, the one area that's missing and its a big missing, is Parkinson's UK providing more dedicated help and support for those who's lives are (or have been) affected by this issue. I had this down as a key objective, and it was even part of the overall raising awareness plan put together last year! However i feel, so far what's been achieved is a long way short of what was agreed. So with that in mind, I've now called a meeting this coming Friday 14th in London with Parkinson's UK to discuss both yours and my concerns. I for one are not asking Parkinson's UK to directly front up any legal action against the drug companies, nor to pay off debts, or repair broken marriages etc etc. I do however expect them to be providing some degree of help, support and guidance to those in need of it.

I will update you all on the outcome of my meeting in due course.

bluey
Thanks for the update Bluey.

glenchass
Thank you Blue-eyes.
It is good to know that you are working on our behalf and I understand how difficult it must be for you.
Good luck with the meeting.
I share your view... that we are not asking PDUK to fund a legal campaign but to speak out against this terrible injustice and organise the early stages of getting a legal firm to take it on.
GSK has let so many of us suffer when they could have prevented it and our ruined lives have forced them to issue warnings and save others.
We need the help of the organisation that exists to help all those with Parkinson's, including us.
GG
I look forward to the report of the meeting when you are able to compose it , Blue-eyes.
Is there a response to the repeated requests for a legal statement about the conditions for putting together some form of class action?
The waiting game means more and more victims are kept at arms length until they pass the 3 year cut-off point for legal action.
GG
Hi all, whilst I agree with GG in all that she has said I do feel that we should be pressing for the three year cut off point to be lifted in these circumstances. It has taken quite a long time for people to get their heads around the whole ICD thing and in my case it wasn't even published until a few years after I stopped the meds, then when I tried Leigh Day the solicitors told me to wait until they had completed their initial actions. Just because some of us took the blasted meds before it became generally known about the implications on ICD's shouldn't rule us out.

Glenchass