I promised I would not get drawn into this silly offloading of angst but I have to address your points.
Thank you for conceding that I am doing a good job raising funds. When all donations are in at the end of this year, I expect to have generated £100,000 in four years. All the money I have raised is ring-fenced and will all go for research into a cure. I even know where it is going.
The reason I joined in this forum at all was to address a sense that it was alright for me ~ I was OK - I was just being heroic, joy riding - I hadn't really got Parkinson's - well not real Parkinson's - not the real Parkinson's that you had - not the really bad sort - or I couldn't do what I am doing - but I am doing what I am doing - therefore I hadn't got the real sort of Parkinson's - therefore I could only be playing at being heroic and joy riding. What a silly tautological argument.
I could not believe when I read your criticisms of me for doing what I am doing. I am not looking for gratitude or praise, but the fact is that any money I raise and funnel into research will benefit everyone - you (and me) I wrote.
Yes I am very upset when I see people living with the terrible difficulties that go with Parkinson's, particularly when I see people like one of my team who was a world champion track athlete and now he struggles with the most simple tasks. You're dead right, we all do that, that's why we are just like everyone on this forum but not as bad as you of course, cos you seem to want to claim world record for suffering. We are real Parkinson's people, not some pretend look alikes,
masquerading as Parkies.
This four years has put a strain on the marriages of several of my team. So what's new you retort as if that negated our difficulties. Another silly argument.
Did you listen to all my radio broadcasts? You must get around. You have no idea what I talked about. You have no idea who my team are , who I am or whether we have DA/OCD problems. But if you want to claim to have a worse dose than me, that's fine.
There are only 30,000 members of PUK and half of them are carers, therefore there are over 100,000 people out there whose help we need. That is why it is important we try to find them, through broadcasts and other media. Have you any better ideas. Another silly argument.
My reference to getting out your wheelchair, wss again in answer to your suggestion that its alright for me, I'm not a real PwP. My point is that everyone can help, we all know that and the positive ones already do.
Despite joining back in this discussion against my better wishes, let me say from the bottom of my heart that the reason I do what I do is that I meet people like you all the time Ray and it makes me very sad that this terrible illness has destroyed your life and turned you from the person you were into the person you are now. I don't know you and you don't know me so I can't pass opinions about you and you can't question my motivations either. But you seem to be a very bitter man, and that makes me even more motivated to do what I can to stop this affliction in its tracks. It is unfair that a few damaged cells in your head have had such a profound effect. I am unlikely to change your attitude, but I hope someone can. I hope you find peace.
No one person should dominate the Forum and make others scared to speak up and I am guilty of not being present recently on the Forum as often as I used to be, because I really could not be bothered to have to defend my corner constantly. Nobody likes to be bullied into silence with personal attacks, like the one on David. I fear I am not alone in feeling that until my views were respected I could not be bothered to participate. This, unfortunately, gives the wrong emphasis on some subjects,especially subjects such as D As. A percentage of P.w.P have had their lives disrupted and changed for the worse, but the majority P.w.P find them most helpful.If John and I had read this Forum, as it is at the moment, the huge emphasis,obsessive preoccupation even, with the negative aspects of D.As would have stopped my husband using them and his life would have been much the poorer for it.There have been complaints that in this recent interview no mention was made of the dangers of OCD with medication.However,when there have been whole programmes devoted to the dangers of agonists,as there was with Pokermid a few years ago,nobody complained that it was down beat and many people were managing to make a good life for themselves despite Parkinson's.
My complaints, as I said, were about an arrogant and pompous attitude, which I stand by. Even more so now.
PD is not a problem to me. I don't like it but I accept it. I'm still here at 61, whereas my mum died at 50 of brain tumours. C'est la vie.
I don't like the huge array of different medications for PD, and my observations indicate that most neurologists, GPs and PD nurses are working purely on a trial-and-error basis. They're doing their best under ridiculous pressures. (I was working in the NHS when Thatcher, Tebbit et al ripped it apart and left its entrails to rot, along with everything else she destroyed.)
The only issue that niggles is that one particular consultant put me on a dopamine agonist for 7 years, carried out no proper monitoring thereafter, and as a result destroyed me. My brain didn't like being poisoned and turned inside out.
Having gone through all that, I've found that there are hundreds of PWP still stuck in that weird zone, and - WORSE - newbies are still being sent there regularly, EVEN NOW, by so-called "experts" who give them no warnings whatsoever about the risks of DAs and OCDs.
This is scurrilous and frightening. Those who try to silence me by saying I scare people miss the point UTTERLY.
Open your minds. [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]
PD is not a problem to me. I don't like it but I accept it. I'm still here at 61, whereas my mum died at 50 of brain tumours. C'est la vie.
I don't like the huge array of different medications for PD, and my observations indicate that most neurologists, GPs and PD nurses are working purely on a trial-and-error basis. They're doing their best under ridiculous pressures. (I was working in the NHS when Thatcher, Tebbit et al ripped it apart and left its entrails to rot, along with everything else she destroyed.)
The only issue that niggles is that one particular consultant put me on a dopamine agonist for 7 years, carried out no proper monitoring thereafter, and as a result destroyed me. My brain didn't like being poisoned and turned inside out.
Having gone through all that, I've found that there are hundreds of PWP still stuck in that weird zone, and - WORSE - newbies are still being sent there regularly, EVEN NOW, by so-called "experts" who give them no warnings whatsoever about the risks of DAs and OCDs.
This is scurrilous and frightening. Those who try to silence me by saying I scare people miss the point UTTERLY.
Open your minds. [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]
NOTICE:
David A Greaves is 100% in breach of Forum Rule 1.1.3, which clearly states that a user must NOT use their real name as their forum username. Anonymity MUST be upheld. This is compulsory and non-negotiable.
Members will recall a recent situation in which some members were reprimanded for even identifying the name of a person who had been suspended.
[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]
David A Greaves is 100% in breach of Forum Rule 1.1.3, which clearly states that a user must NOT use their real name as their forum username. Anonymity MUST be upheld. This is compulsory and non-negotiable.
Members will recall a recent situation in which some members were reprimanded for even identifying the name of a person who had been suspended.
[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]
I dont see how david could defend himself without letting us know who he was.
[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]
as far as forum rules go, neither of us as without fault. [edited]
believe it or not, i have your best interest at heart, [edited]
regards
t
[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]
as far as forum rules go, neither of us as without fault. [edited]
believe it or not, i have your best interest at heart, [edited]
regards
t
Now what is that saying , "If the cap fits wear it".
Rule; 2.1 You agree that you will not use the discussion forum to:
2.1.1 attack others
2.1.2 make inflammatory remarks
1.1.4 to act in accordance with user guidelines and keep all messages tasteful, civil and relevant
[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]
The Parkinson's UK form states that;
" The purpose of the forum is to provide users with a positive space in which they can share experiences and exchange views".
It's not the quantity of post that you make but the quality. Sadly in recent times (IMHO) this has been lacking; causing other members to think twice before posting or joining in on discussions. I use the word discussion because a debate is where there is a winner, none of us on this forum should wish to out run another member or win over them.
When a personal battle; no matter what tragic event caused it takes over and worst of all takes over all the threads, it's time to say enough is enough.
Rule; 2.1 You agree that you will not use the discussion forum to:
2.1.1 attack others
2.1.2 make inflammatory remarks
1.1.4 to act in accordance with user guidelines and keep all messages tasteful, civil and relevant
[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]
The Parkinson's UK form states that;
" The purpose of the forum is to provide users with a positive space in which they can share experiences and exchange views".
It's not the quantity of post that you make but the quality. Sadly in recent times (IMHO) this has been lacking; causing other members to think twice before posting or joining in on discussions. I use the word discussion because a debate is where there is a winner, none of us on this forum should wish to out run another member or win over them.
When a personal battle; no matter what tragic event caused it takes over and worst of all takes over all the threads, it's time to say enough is enough.
NCN, I think you inadvertently addressed your last post to me.
[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]
[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]
Turnip.
When he set up his new ID as his real name he didn't know he would be needing to defend himself, so that doesn't make sense.
I accept that the rest of my response was the result of my finding [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]. Some people just get you like that, instantly - I'm sure you've met such people in your time.
He refused to even discuss the possibility of giving publicity to the DA/OCD issue. He also ignored the hypothesis (not mine) that his upbeat programme, showing PWP to all be fit, healthy and happy, could easily cause a serious drop in PUK income.
[edited]
When he set up his new ID as his real name he didn't know he would be needing to defend himself, so that doesn't make sense.
I accept that the rest of my response was the result of my finding [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]. Some people just get you like that, instantly - I'm sure you've met such people in your time.
He refused to even discuss the possibility of giving publicity to the DA/OCD issue. He also ignored the hypothesis (not mine) that his upbeat programme, showing PWP to all be fit, healthy and happy, could easily cause a serious drop in PUK income.
[edited]
R.O.S. temporarily withdrawn pending legal action.
Parking ticket?
Nose wipe?
Come on.Let's keep this discussion to the point,not just throwing taunts "over the shoulder"
The trouble is that the negative effects of D.As seem to crop up on a huge number of threads. Making people aware of the situation has almost become an obsession in itself.There is one thread on this subject that runs all the time and this should be enough.If Ray is good enough to allow access to himself, through the personal messaging system he can tell anyone his experiences and give advice if it is asked for.We do not need it pushed down our throat at every opportunity. We were told about the damaging effects of D.As by the consultant at the time of diagnosis,six years ago, long before Hull Victim wrote about his terrible experiences.
I rejoice for David and would like to see more positive contributions such as his. We should remember how each of us felt at the time of diagnosis and try to give the newly diagnosed a balanced picture.
The trouble is that the negative effects of D.As seem to crop up on a huge number of threads. Making people aware of the situation has almost become an obsession in itself.There is one thread on this subject that runs all the time and this should be enough.If Ray is good enough to allow access to himself, through the personal messaging system he can tell anyone his experiences and give advice if it is asked for.We do not need it pushed down our throat at every opportunity. We were told about the damaging effects of D.As by the consultant at the time of diagnosis,six years ago, long before Hull Victim wrote about his terrible experiences.
I rejoice for David and would like to see more positive contributions such as his. We should remember how each of us felt at the time of diagnosis and try to give the newly diagnosed a balanced picture.
Having read the latest postings on this thread I am appalled at the in fighting.
We are all fighting the same condition and we all manage it in different ways, obviously David along with many others find their strengths in fundraising, others like Ray, who are less physically active use their skills in other ways, there should be no problem.
I think we all need to take time out and remember that it isn't just DA's that scramble our brains but most of the meds we are prescribed do so in some way or other.
We are, or we should be, all in this together, we are all different people and we should be glad we are....what a boring world if we were all the same !!!!!
I too get so fed up with the bickering and fighting, we really must begin to empathize with each other and get on with the fight against PD by helping each other fight this condition in whatever way we can, be that in a physical or emotional way.
Glenchass
We are all fighting the same condition and we all manage it in different ways, obviously David along with many others find their strengths in fundraising, others like Ray, who are less physically active use their skills in other ways, there should be no problem.
I think we all need to take time out and remember that it isn't just DA's that scramble our brains but most of the meds we are prescribed do so in some way or other.
We are, or we should be, all in this together, we are all different people and we should be glad we are....what a boring world if we were all the same !!!!!
I too get so fed up with the bickering and fighting, we really must begin to empathize with each other and get on with the fight against PD by helping each other fight this condition in whatever way we can, be that in a physical or emotional way.
Glenchass
What do we do then if someone starts deriding someone else for thir efforts.If we ignore it they think they can do it gain.I have seen too many people leave the Forum because of the unpleasant tone of some of the postings
I joined this Forum before it was a proper Forum,just a trial forum and posted very regularly.(Am I the oldest serving member?) My aim was to try and give support to the newly diagnosed,in the way I had been supported on this early prototype.I hoped that by mentioning how that for many life with Parkinson's could still be rewarding, although not the life they had planned or hoped for, would help the newly diagnosed. I fail to post so regularly now because I felt that having positive views "knocked"and derided was getting tedious. If we do not want the doom and gloom merchants to take over, those P.w.P who still live rewarding lives despite Parkinson's, have got to speak up. Perhaps I should start posting again.
As far as fund raising is concerned I feel people will give more generously if they see P.w.P trying to make a life for themselves, rather than moaning and groaning all the time.Surely, when I look at the Home page of Parkinson's U.K it is bright smiling people one sees.So what image do they want to portray
As far as fund raising is concerned I feel people will give more generously if they see P.w.P trying to make a life for themselves, rather than moaning and groaning all the time.Surely, when I look at the Home page of Parkinson's U.K it is bright smiling people one sees.So what image do they want to portray
I fear the last paragraph came over badly and I gave an impression I did not intend. Of course, we all need to have a moan from time to time.Nobody living with a chronic condition can be bright and breezy or positive all the time.It is the knocking of any positive postings that is so destructive and with which I take issue.
Ray,
Thanks for the email you sent me, I'm not sure why you thought the need to send me a private message, did you think I'd be intimidated? Anyway I will NOT withdraw anything I'VE said either by way of this public forum or to you in an email as you suggested, if you took anything I said personally that's your problem not MINE.
As for me being a fool for paying off MY debts then I'm a fool, one that'd rather get on with life then live in bitterness.
And why would you think I'm jealous of you? I couldn't care less if you had 2, 20 or 200 million, money doesn't rule MY world, great if you've got it and good luck to those who have, I'M happy in MY world with my hubby, the kids and the cat!
Thanks for the email you sent me, I'm not sure why you thought the need to send me a private message, did you think I'd be intimidated? Anyway I will NOT withdraw anything I'VE said either by way of this public forum or to you in an email as you suggested, if you took anything I said personally that's your problem not MINE.
As for me being a fool for paying off MY debts then I'm a fool, one that'd rather get on with life then live in bitterness.
And why would you think I'm jealous of you? I couldn't care less if you had 2, 20 or 200 million, money doesn't rule MY world, great if you've got it and good luck to those who have, I'M happy in MY world with my hubby, the kids and the cat!
Hi Gill.
Your post has now been edited, and I'm perfectly happy with it now, thank you.
You are not a fool.
From my own REAL at-law experiences I was trying to let you know that the law now recognises the dopamine agonist problem, and that it's often not the PWP's fault, but that of undisclosed third parties.
I was merely offering well-intentioned information and advice. If you choose to ignore this, and continue to unnecessarily repay hundreds of thousands of pounds, that's up to you.
Take care,
Ray.
Your post has now been edited, and I'm perfectly happy with it now, thank you.
You are not a fool.
From my own REAL at-law experiences I was trying to let you know that the law now recognises the dopamine agonist problem, and that it's often not the PWP's fault, but that of undisclosed third parties.
I was merely offering well-intentioned information and advice. If you choose to ignore this, and continue to unnecessarily repay hundreds of thousands of pounds, that's up to you.
Take care,
Ray.
This topic should be re-titled The Jeremy Kyle Show.
I've seen some bickering over nothing in my time.
I've been unlucky enough to have been badly affected by DA's and Ray has helped like no-one else could have at the time.
To have your life ripped up, not once by having been told you have PD, but by being given a prescription drug that destroys your relationships, having the stress and public humiliation of being hauled into debtors courts, being made bankrupt, and all the rest. Please believe me, you are bitter as hell. Its a double blow to the gonads and no-one is going to give you a tablet that will give you back your home, your money, your wife, your family, your friends, your self respect.
On the other hand if you haven't been down that road, it will be completely alien to you. You will be making a good fist of a bad situation and will be getting some feel good back from your altruistic good deeds.
If the roles were reversed you would have Ray out fundraising and you would have David wanting the plight of those whose lives have been crushed to be highlighted at every opportunity.
Your both right, there is just a distinct lack of empathy on both sides.
I feel slightly guilty for saying it, but when ever I see
[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
in a posting, I reckon it must have been good and I just fill in the blanks myself.
I've seen some bickering over nothing in my time.
I've been unlucky enough to have been badly affected by DA's and Ray has helped like no-one else could have at the time.
To have your life ripped up, not once by having been told you have PD, but by being given a prescription drug that destroys your relationships, having the stress and public humiliation of being hauled into debtors courts, being made bankrupt, and all the rest. Please believe me, you are bitter as hell. Its a double blow to the gonads and no-one is going to give you a tablet that will give you back your home, your money, your wife, your family, your friends, your self respect.
On the other hand if you haven't been down that road, it will be completely alien to you. You will be making a good fist of a bad situation and will be getting some feel good back from your altruistic good deeds.
If the roles were reversed you would have Ray out fundraising and you would have David wanting the plight of those whose lives have been crushed to be highlighted at every opportunity.
Your both right, there is just a distinct lack of empathy on both sides.
I feel slightly guilty for saying it, but when ever I see
[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
in a posting, I reckon it must have been good and I just fill in the blanks myself.
Nicely put, Eck.