Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders


#521
Sorry back again.......

Does anyone else think it funny how ROS was suspended because he criticised Dr K Breen then IMMEDIATELY after the suspension a forum ID for PDUK's Dr Kieran Breen was set up, so ROS could not respond or was able to partake.

That was also when the mods distributed all their new documents and updates - while ROS was out of the way.


Many don't like ROS because he is so outspoken, but by jove I feel we need someone of his caliber to help fight this fight....

Am I on my own thinking this way????

If I should disappear, you all will know I have also been suspended or banned because I have dared to speak out....I don't think I have said anything wrong, these are my thoughts and just wondered if anyone else thinks the same. I completely understand you don't want to rock the boat but again if we don't give a voice to these issues we are all done for.

Radz x

#522
I echo all your words.
After 49 years together my husband and I are done for anyway.
Nothing will ever take away the damage done to us and our family by GlaxoSmithKline and our consultant.
Financial compensation may make life a little easier but we want acknowledgement of the role of RequipXL in our tragedy and others prevented from facing our plight.
PDUK have the chance to respond now and begin offering real support.
We are waiting.

#523
Hi All,
Would someone please explain about suspension from the forum? How do you know Ray was suspended? How long last? Am personally grateful for this thread. Appreciate others sharing their experiences good and horrendous. Thanks, Lin2

#524
Hi Lin
Via the grapevine, until Oct 3, by the moderator.
Much missed.
x

#525
Radz you are not on your own with these thoughts.

ROS is outspoken with his views, but he has every right to be. His personal experience with DA's is horrendous. And because of this forum and people like ROS I and others would not know about how harmful these drugs can be.
It takes great courage to talk about ones own personal issues endured by these drugs. And the devastating impact on ones family. Not seeking symphathy from others just warning pwp about the dreadful impact of the DA's.

We should all be able to have freedom of speech without been persecuted.
These are my views. I respect everyones opinion on the forum as we are all here for one reason and thats PD.
So is a forum not here to give support to each other.

all the best PB

#526
Radz,

You won't get banned for speaking out. Radz, Radar47, come in Radar47, ... , RADZ.

I left the CAB office with the stress busting knowledge that if I get taken to the cleaners before my next appointment I can give them a phone. I can only imagine that would be to get the number of the nearest homeless unit.

Looked up that Big Society government scheme, to see if I could launch something off the back of it. But that only deals with local issues (Divided we fall). So its off to my MP.

#527
I refer to Radz previous post.

Did you notice that his user name and real name are the same. Someone didn't read their T's & C's before finalizing there user setup.

Just saying is all.

Eeeeeh its one rule for us and another for the director of PUK research.

BTW, Dr Breen, welcome to the forum.

I'm heading underground. TTFN.

#528
Morning all,

ECK, yes I did notice that error.....and like you have said, rules are made to be broken by the choosen few.

I am so sorry to read what was said to you at CAB, my Mother used to say, "keep your words sweet, because you never know when you might have to eat them."

How you keep cheerful beats me, keep smiling there MUST be someone out there that can help us.

Radz xx

#529
Hi all, I agree with what has been said regarding ROS's suspension, however, I dont know whats happened really. I know that he criticized, the doctor.... but who is he anyway?

I also agree with the comments that PUK should assist with legal advice, i really am not at all surprised that Eck got nowhere at the CAB I have done that and taken legal advice about the fact that my debt was incurred due to med side effects...got nowhere there either. The fact is we are in the minority when it comes to seeking redress from the pharmaceuticals, we are way behind many other countries. This whole experience has made me a very angry woman, I'm almost ashamed to admit it, however my have and still are being punished for something that was completely out of our control. Perhaps we should all visit our MP's and have this brought up in the house of Commons, at least then it's had a airing.

I'm willing to do that, is anybody else?

Glenchass

#530
Dam good idea that Glenchass



Sometimes it's hard to think of a reason to add anything, but I believe these topics need to be ever-visible to newbies, from the moment they first enter the forum. If they're dipping a toe in, and our threads trigger some vague little memory inside them, we're halfway there.


PB rightly says we're here to support each other. What we need is an international website run by and for DA/OCD PD patients, where we can not only discuss local issues like patients not being warned, how bloody thick consultants can be or how many new victims we've found this week, and how much they've been bankrupted to how different countries are progressing with legal claims against specific drug companies, current and likely compensation and the success or otherwise of various law firms. As well as local issues in other countries we in the UK may not even be aware of. Non-DA drug prices & availability, for example. In some places are only available privately.

To run such a website would be a huge undertaking (no!) for someone, though, and would doubtless receive pretty heavy artillery from the drug companies.

Do you know of any PD patients or DA/OCD victims who are NON-Caucasian? I don't. I wonder if that's significant?


Radz xx

#531
i don't exactly know the lady Radz, but I met an elderly Asian lady at a PD clinic. I chatted to her daughter whist we waited. She told me that her mother's pd manifested mainly in lack of judgement. Do you think that this could be the basis of (some) OCD behaviour?

#532
Of course she might have meant lack of spatial judgement, but that was not the impression I got. It sounded more like reasoning/intelletual judgement. Which could mean that she had a form of dementia. (Oh does it not get complicated?) But it had been diagnosed as resulting from pd

#533
serious face -
much of pd is genetics, genes vary between racial groups, pd varies between racial groups. so does sickle-cell anaemia, hep c , various cancers, blood pressure etc.
all racial groups get pd but in varying percentages.

I have recently been reducing requip but now realise it does a very useful job as a 'background' safety net. I was on 32m which was far too much, i am now on 12 but wouldnt want to go an lower. From my personal experience what i SHOULD have been given is
requip on its own up to 12 mg
then requip with levadopa but never more than 12.

i would be very interested in other peoples:
efficatious level of requip at initial introduction (16MG)
level of behavioural problems with requip (20MG)
level where levadopa AND REQUIP work without behavourial problems (12MG)

if we had enough data it might be useful.

#534
Hi Al
just in case anybody dosn't know there is an all party parliamentary group on PD


http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/parliaments_and_assemblies/appg.aspx

Jonathan

#535
Thank you Turnip and CP for your input.




Do you think such a project would get off the ground, or collapse through the usual apathy?

Objective: To create a dedicated website to act as an information exchange and forum for victims of obsessive compulsive disorders caused by anti-Parkinsonian drugs prescribed without any or adequate warning of serious OCD side effects.

Suggested name: POVIE (Parkinson’s OCD Victims’ Information Exchange)

On doing a web search I found that the following

Website: www.povie.org or www.povie.co.uk are both available.

Radz xx

#536
I think that's a great idea Radz. I think POVIE.org might sound a little more geographically better if it is intended to be worldwide, in my opinion .co.uk makes it a bit more UK only looking. I'm happy to be included in anything that takes this issue further and opens it up more, so I'm in and would hope others would be in a position to commit.

My hubby is in his final months of Mental Health Nurse training and is actually using this very subject for his final assignment. Onward and upward my PUK friends, lets all unite, come out fighting and spread the word, sadly we have been taken for fools for far too long. We deserve the same rights as others with pd, who by virtue of where they live are able to seek redress against the system that has ruined their lives. Maybe the Court of Human Rights would be worth a shot!

Glenchass

#537
i agree with u radar i think that kind of project would work a treat:smile:

#538
Glenchass I wish your husband all the very best in his Mental Health Nurse training. He has first hand info of how PD and meds affect you, good luck with his paper.

Thanks Ali, should we manage to create a site it would be wonderful and hopefully help many people suffering. Just to be able to tell others how they have been coping could well help them. We live in hope.

Radz xx

#539
I'm on Requip XL.. It is only by reading the comments and stories by others brave enough to speak out that I realised just how dangerous it is to become complacent about the meds we are taking. My o/h reads all of these too because I am so scared that something might happen to me and I need him to watch out for any signs that I might miss.

Glenchass - I wish your husband every success.

#540
Your doing the right thing Pebble, pwp who are taking DA's need family members ect to be fully aware of the side effects and to remain vigilant. Da's are wonderful meds for some, but you always need to be wary particularly as the dosage of the meds are increased. Long may you remain well on yours.

Glenchass