No. I was in my bedroom. I haven't been able to leave the house for over 2 years, apart from for medical appointments. I'm currently typing with 1 finger, about 1 character every 3 seconds. All limbs shaking, right foot going for a trek on its own, chin nearly on floor. Have a nice day.
To David A Greaves
You have my every respect, admiration and thanks for your efforts to raise funds that will hopefully lead to a cure for PD. Please do not think that I am not grateful. I tend to use this forum for tips on how to cope with the everyday difficulties of PD. I have never been a flag waver, but I am a contributor. As you so rightly say, we can all do something, to the best of our abilities.We all, like anyone else have different skills, interests and priorities.
Thank you
You have my every respect, admiration and thanks for your efforts to raise funds that will hopefully lead to a cure for PD. Please do not think that I am not grateful. I tend to use this forum for tips on how to cope with the everyday difficulties of PD. I have never been a flag waver, but I am a contributor. As you so rightly say, we can all do something, to the best of our abilities.We all, like anyone else have different skills, interests and priorities.
Thank you
That's right, David. You just carry on suffering, feeling smug, flag-waving and acting the hero.
We'll just carry on quietly saving real lives, as we've been doing for several years - OUT of the spotlight.
We'll just carry on quietly saving real lives, as we've been doing for several years - OUT of the spotlight.
Sorry you feel that way, but if you really knew me, you would not be calling smug or heroic. I said in my first post that we are all at different stages with our illness and unfortunately you are experiencing life in a different way to me, but I can't understand why that makes you hit out at me. I usually find when I meet pwps that there is an immediate empathy. We are not the same, but we are all in the same boat, and I'm trying to stop it sinking. Remember the back of the Parkinson's UK tee shirt "We can beat it". That means we are on the same side doing what ever we can for all those people with real lives. I am doing what I can and I am appealing to everyone reading this to do what they can. Its the only way forward. Don't feel bitter. That's destroying you not me. Be thankful.
Dear David,
As someone who has also given interviews, (Not for PD but to raise money for Veterans) I completely understand the frustration that comes with them.
More often than not you go with the intent to say something and are just not allowed the time.
Being interviewed is more stressing than many realise, the media have time slots and their idea of how they want things to go. It’s very hard to manipulate the conversation as you wish and more often than not; it is the person being interviewed who is manipulated and leaves asking themselves if it could had gone better or perhaps they should have said something else.
The good thing is that any coverage, (especially) when talking about PD raises awareness.
There is nothing lost on free publicity you can’t buy it!
Only a few years ago we would not even have been considered material for TV/radio or Newspaper articles; it has taken time to make the media understand that there are people who have PD.
The long haul and it will be one, take time but eventually we will get there.
I am sure that eventually PD will be talked about in the media at fuller lengths and with more in depth. Until that moment we can only thank those who allow us those few minutes of airspace and the people with PD who bravely face an interview.
Well done you for your efforts and congratulations on finishing the 2000 miles to raise funds.
As someone who has also given interviews, (Not for PD but to raise money for Veterans) I completely understand the frustration that comes with them.
More often than not you go with the intent to say something and are just not allowed the time.
Being interviewed is more stressing than many realise, the media have time slots and their idea of how they want things to go. It’s very hard to manipulate the conversation as you wish and more often than not; it is the person being interviewed who is manipulated and leaves asking themselves if it could had gone better or perhaps they should have said something else.
The good thing is that any coverage, (especially) when talking about PD raises awareness.
There is nothing lost on free publicity you can’t buy it!
Only a few years ago we would not even have been considered material for TV/radio or Newspaper articles; it has taken time to make the media understand that there are people who have PD.
The long haul and it will be one, take time but eventually we will get there.
I am sure that eventually PD will be talked about in the media at fuller lengths and with more in depth. Until that moment we can only thank those who allow us those few minutes of airspace and the people with PD who bravely face an interview.
Well done you for your efforts and congratulations on finishing the 2000 miles to raise funds.
Firstly well done David for what you've done and are doing raising funds and awareness for pd, I for one admire you!
Secondly, who's we ray? you seem to think you speak for everyone on this forum, I'm not sure who you think your saving, all I can see from a lot of your posts is bitterness, self pity and ridiculing others opinions, I for one don't want to participate on here anymore and your half the reason why. I haven't posted on here all week but I felt the need to say something on this thread.
Your not the only one who's suffering and to tell another to carry on suffering when he's doing his best to get on with his life aswell as raising awareness and funds, it makes me feel sick.
PD isn't just about DA's and OCD! It should be about helping and understanding each other while respecting others opinions.
Secondly, who's we ray? you seem to think you speak for everyone on this forum, I'm not sure who you think your saving, all I can see from a lot of your posts is bitterness, self pity and ridiculing others opinions, I for one don't want to participate on here anymore and your half the reason why. I haven't posted on here all week but I felt the need to say something on this thread.
Your not the only one who's suffering and to tell another to carry on suffering when he's doing his best to get on with his life aswell as raising awareness and funds, it makes me feel sick.
PD isn't just about DA's and OCD! It should be about helping and understanding each other while respecting others opinions.
GILL,
DAVID's post came across as holier-than-thou, and implied that the rest of us weren't doing our bit.
Yes, helping those who've been (or may become) affected by the OCD side effects of mis-prescribed dopamine agonist medication IS my "specialist area", and I've personally saved numerous individuals from bankruptcy, divorce and suicide - do you want references?
Of course I'm bitter, that's what drives me on. So? As long as something does. When the consultant you trust poisons YOU for 7 years (plus 2 more fighting legal battles), filling your head with gambling, hypersexuality and all sorts of murky weirdness, whilst losing you £2m, your home, your family and your career, perhaps YOU'LL be bitter too. When you haven't seen or spoken to your 22-year-old son since he was 14 because he thinks you're "a nutter" (having read all about your exploits in the gutter press), YOU'LL be in despair.
But I believe DAVID should have spent a bit of time looking through past posts on this forum, and finding out what we're REALLY doing for each other before implying that WE aren't "doing our bit." If he's done his bit to keep funding the CEO's £140k basic pay for a while bully for him. But to reprimand wheelchair-using PWP for not being there at the end of HIS event is, IMHO, reprehensible.
Come and spend a few weeks at the sharp end, DAVID, and find out what REAL suffering and despair are like, instead of joyriding around with your hand out, enjoying the adulation. I wish I could. Don't tell us about all the aches and pains you had to endure, we all do that every day. And as the son of a racing cyclist I know the effort that requires. I'll still happily swap places with you. Well, physically at least.
Regards,
Ray.
.
DAVID's post came across as holier-than-thou, and implied that the rest of us weren't doing our bit.
Yes, helping those who've been (or may become) affected by the OCD side effects of mis-prescribed dopamine agonist medication IS my "specialist area", and I've personally saved numerous individuals from bankruptcy, divorce and suicide - do you want references?
Of course I'm bitter, that's what drives me on. So? As long as something does. When the consultant you trust poisons YOU for 7 years (plus 2 more fighting legal battles), filling your head with gambling, hypersexuality and all sorts of murky weirdness, whilst losing you £2m, your home, your family and your career, perhaps YOU'LL be bitter too. When you haven't seen or spoken to your 22-year-old son since he was 14 because he thinks you're "a nutter" (having read all about your exploits in the gutter press), YOU'LL be in despair.
But I believe DAVID should have spent a bit of time looking through past posts on this forum, and finding out what we're REALLY doing for each other before implying that WE aren't "doing our bit." If he's done his bit to keep funding the CEO's £140k basic pay for a while bully for him. But to reprimand wheelchair-using PWP for not being there at the end of HIS event is, IMHO, reprehensible.
Come and spend a few weeks at the sharp end, DAVID, and find out what REAL suffering and despair are like, instead of joyriding around with your hand out, enjoying the adulation. I wish I could. Don't tell us about all the aches and pains you had to endure, we all do that every day. And as the son of a racing cyclist I know the effort that requires. I'll still happily swap places with you. Well, physically at least.
Regards,
Ray.
.
I am going to politely withdraw from this conversation at this point. You know absolutely nothing about me Ray so until you do I shall not give you the pleasure of airing your sceptical, negative, criticisms.
You make your choices in life. I choose to be optimistic, hopeful, motivated, positive and none judgmental. You have made your choice. I am happy. How about you?
You make your choices in life. I choose to be optimistic, hopeful, motivated, positive and none judgmental. You have made your choice. I am happy. How about you?
You've seen what I've been through David. If you'd been through the same I guarantee you wouldn't be so "optimistic" or smug.
I've been destroyed by a PD consultant giving me the wrong drug, and am now penniless, living in a rented inner-city slum. My life and family were taken away from me through no fault of my own, and 9 years have disappeared.
But at least I'm now saving many from similar fates. En route I've encountered situations you wouldn't be able to comprehend, including murder and suicides.
You haven't a clue.
.
I've been destroyed by a PD consultant giving me the wrong drug, and am now penniless, living in a rented inner-city slum. My life and family were taken away from me through no fault of my own, and 9 years have disappeared.
But at least I'm now saving many from similar fates. En route I've encountered situations you wouldn't be able to comprehend, including murder and suicides.
You haven't a clue.
.
RAY
I'VE been affected by DA's, I'M well aware of the side effects of these meds I was on them for nearly 6yrs and I'M still paying my debts off, I will be for years to come! I suffered from gambling and hypersexuality, I took responsibility for MY actions and I'VE chosen to put it all behind ME, I'M sorry I didn't lose MY home or MY family but I took the risks and I could easily have lost them
( post edited)
I'm sure David is aware of the aches and pains and the real world of PD after all he has got it himself, I don't think he implied WE don't do OUR bit, he was just suggesting maybe WE could.
As for references Ray, no need to get them, I can make MY own mind up about you.
I'VE been affected by DA's, I'M well aware of the side effects of these meds I was on them for nearly 6yrs and I'M still paying my debts off, I will be for years to come! I suffered from gambling and hypersexuality, I took responsibility for MY actions and I'VE chosen to put it all behind ME, I'M sorry I didn't lose MY home or MY family but I took the risks and I could easily have lost them
( post edited)
I'm sure David is aware of the aches and pains and the real world of PD after all he has got it himself, I don't think he implied WE don't do OUR bit, he was just suggesting maybe WE could.
As for references Ray, no need to get them, I can make MY own mind up about you.
Very well done David.I do not call what you are doing smug, but brave. Anyone who has Parkinson's can sit and be angry and bitter about what they have lost.It may not be financial, but it may be the ability to do the things that make life worth while for them.To my way of thinking, the past is gone,there is nothing we can do about that,however awful it has been.It is only by saying that we will attempt to pick ourselves up and make the best of a very bad job that we can regain or maintain some dignity. I feel deeply sorry for anyone who is bitter, because it means they are continuing to destroy themselves.The past matters but today is what is important.
Yes,I know I said I would not say any more and have now have written on this thread again, but what I will not do is enter into an argument with anyone who tries to denigrade and put down anyone who does not hold the same opinion as they do.
Yes,I know I said I would not say any more and have now have written on this thread again, but what I will not do is enter into an argument with anyone who tries to denigrade and put down anyone who does not hold the same opinion as they do.
Well said and thank you for your support. Now I've gone and won't be back. I'm too busy enjoying life and continuing to beat this horrible illness.
Gill.
I can't understand why every time I post anything you're in there like a flash, determined to knock me down. I'm not aware that I've done you any harm.
[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 response:
1. If you're still paying off all those debts, [edited]. The law now recognises that for those who are susceptible, DAs render them "not responsible for their actions", i.e. effectively temporarily insane). Any debts incurred whilst on prescribed DAs are no longer your responsibility. If you are being pursued by finance houses etc, their only recourse is a civil action against the doctors, NHS Trust or drug company. You need to get a sworn written report from a recognised expert, though, like a Professor of Neurology specialising in PD.
2. You seem to think I had £2 million lying around, [edited]. This figure is a total legal claim estimate and includes lost future income due to enforced retirement (from 2003 until my otherwise expected retirement date), and similarly accruing endowments and pensions. Plus all legal costs. I actually spent around £500k, which I obtained from (roughly) bank overdrafts (£20k), credit cards (£300k), illegal activities (£30k) and my half of the net sale of the marital home (£150k). The latter, of course, left me homeless.
3. I don't have to explain my internet business to YOU. The law has fully exonerated me from any wrongdoing, accepting that the DA had completely taken over. Your post implies some kind of premeditation and/or guilt. This contravenes the Court's judgment and could be construed as Contempt. PLEASE WITHDRAW THIS ACCUSATION IMMEDIATELY, [edited].
4. Of course I'm bitter, but that certainly ISN'T destroying me, au contraire. As a sufferer with a seriously restricted lifestyle I get terrific satisfaction when I know I've found yet another patient who's been told NOTHING about DAs and their side effects, and is, as a result, about to get sucked in. To prevent this is a wonderful feeling. Similarly if I find a patient who has already gone berserk without knowing why, with an equally dumbfounded partner standing helplessly by, in tears and contemplating suicide, and I can explain to them what's happened and how they can stop it all, it's the best feeling I've had in my life. To nurse such couples through their nightmare and back to normality gives my life true meaning. Much more than a bike ride for a few sponsors would, that's for sure!
Ray.
I can't understand why every time I post anything you're in there like a flash, determined to knock me down. I'm not aware that I've done you any harm.
[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 response:
1. If you're still paying off all those debts, [edited]. The law now recognises that for those who are susceptible, DAs render them "not responsible for their actions", i.e. effectively temporarily insane). Any debts incurred whilst on prescribed DAs are no longer your responsibility. If you are being pursued by finance houses etc, their only recourse is a civil action against the doctors, NHS Trust or drug company. You need to get a sworn written report from a recognised expert, though, like a Professor of Neurology specialising in PD.
2. You seem to think I had £2 million lying around, [edited]. This figure is a total legal claim estimate and includes lost future income due to enforced retirement (from 2003 until my otherwise expected retirement date), and similarly accruing endowments and pensions. Plus all legal costs. I actually spent around £500k, which I obtained from (roughly) bank overdrafts (£20k), credit cards (£300k), illegal activities (£30k) and my half of the net sale of the marital home (£150k). The latter, of course, left me homeless.
3. I don't have to explain my internet business to YOU. The law has fully exonerated me from any wrongdoing, accepting that the DA had completely taken over. Your post implies some kind of premeditation and/or guilt. This contravenes the Court's judgment and could be construed as Contempt. PLEASE WITHDRAW THIS ACCUSATION IMMEDIATELY, [edited].
4. Of course I'm bitter, but that certainly ISN'T destroying me, au contraire. As a sufferer with a seriously restricted lifestyle I get terrific satisfaction when I know I've found yet another patient who's been told NOTHING about DAs and their side effects, and is, as a result, about to get sucked in. To prevent this is a wonderful feeling. Similarly if I find a patient who has already gone berserk without knowing why, with an equally dumbfounded partner standing helplessly by, in tears and contemplating suicide, and I can explain to them what's happened and how they can stop it all, it's the best feeling I've had in my life. To nurse such couples through their nightmare and back to normality gives my life true meaning. Much more than a bike ride for a few sponsors would, that's for sure!
Ray.
Please stop this!
We need all of you. It's not a competition. We need the relatively able-bodied to raise funds for research.Yes some goes on vastly inflated salaries for executives.
Don't know how to combat that.
Yes we need Ray's wwonderful support for those damaged by incompetent consultants and drug companies dishing out DAs without adequate warnings and checks.
But we need all the support in a variety of ways.
To each according to his needs and from each according to his means. Not me. Karl Marx.
Be kind to each other. There are too many who can and will hurt us without us doing it to ourselves.
We need all of you. It's not a competition. We need the relatively able-bodied to raise funds for research.Yes some goes on vastly inflated salaries for executives.
Don't know how to combat that.
Yes we need Ray's wwonderful support for those damaged by incompetent consultants and drug companies dishing out DAs without adequate warnings and checks.
But we need all the support in a variety of ways.
To each according to his needs and from each according to his means. Not me. Karl Marx.
Be kind to each other. There are too many who can and will hurt us without us doing it to ourselves.
What we need is discussion without anyone trying to deride anyone else's efforts. Let's rejoice in anyone's contribution, whatever it is.
You're right of course GG.
David did, and continues to do, a fine job fund raising, some of which income eventually gets used for research - after the extraction of overheads. Mind you other organisations (eg Michael J Fox) take off much less for overheads than PUK. That is, a noticeably bigger chunk of every £ actually gets spent on what the donor wanted.
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
1. He's been raising "funds to find a cure for you".
[edited]
2. He's cried "watching all of us struggle to get dressed".
Surely we all do that, daily?
3. This ride "has put a big strain on our relationships."
So what's new?
4. He's "talked on radio stations..."
Never mentioned the DA/OCD problems affecting 24% of us, though;
5. "Everyone can help.".
Says whom? Has he asked all 120,000 of us in the UK?
6. "Yes, you in the wheelchair, were you at the end of the path when we cycled past waving your flag?"
[edited]
Are we all supposed to build our lives around HIS diary? Have we nothing else to do as important as take part in HIS jaunts?
He's said nothing we didn't know anyway, but when we raised the issue of OCDs, and how we could all benefit from them being mentioned on-air, he ignored both us and the subject completely: maintaining the status quo, not rocking the boat, toeing the line. [edited]
David did, and continues to do, a fine job fund raising, some of which income eventually gets used for research - after the extraction of overheads. Mind you other organisations (eg Michael J Fox) take off much less for overheads than PUK. That is, a noticeably bigger chunk of every £ actually gets spent on what the donor wanted.
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
1. He's been raising "funds to find a cure for you".
[edited]
2. He's cried "watching all of us struggle to get dressed".
Surely we all do that, daily?
3. This ride "has put a big strain on our relationships."
So what's new?
4. He's "talked on radio stations..."
Never mentioned the DA/OCD problems affecting 24% of us, though;
5. "Everyone can help.".
Says whom? Has he asked all 120,000 of us in the UK?
6. "Yes, you in the wheelchair, were you at the end of the path when we cycled past waving your flag?"
[edited]
Are we all supposed to build our lives around HIS diary? Have we nothing else to do as important as take part in HIS jaunts?
He's said nothing we didn't know anyway, but when we raised the issue of OCDs, and how we could all benefit from them being mentioned on-air, he ignored both us and the subject completely: maintaining the status quo, not rocking the boat, toeing the line. [edited]
Absolutely ECD,
Everyone is equally important and deserves to have their views listened to and respected whether you agree with them or not.
Caroline
Everyone is equally important and deserves to have their views listened to and respected whether you agree with them or not.
Caroline
I agree. David does good work and I commend him for it. [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 note that while we've all been happy to discuss HIS efforts, he's refused on several occasions to say even one word about the DA/OCD issue.
If WE mention it he just ignores it!
I note that while we've all been happy to discuss HIS efforts, he's refused on several occasions to say even one word about the DA/OCD issue.
If WE mention it he just ignores it!
To imply that because the Law of the land says you do not need to pay off a debit is, (IMHO) immoral.
(Tantamount to inciting non payment of debits because the law permits this)
Whilst one may have a debit, it can and should (IMHO) be paid off.
There are various ways of doing this without finding loop holes in the legal system.
I can only trust that the book you never fail to mention which; should be coming out at Christmas will find you in a better position to affront those that were hurt by actions that I do not say were entirely due to your own making, but the DA’s that were given to you.
Personally I shall not purchase it. I have read, was forced to read; even plough myself through over 11143 posts that seem to pop up where ever one goes regarding your personal battle.
I may sympathize but there is a limit. Someone needs to inform you that you do not speak for the vast majority of the members on this forum.
In fact at times you post as if you were moderating PD UK.
You often use the word, “We” or “Many”. I assure you, that you do not speak in my name nor do you speak for many people that suffer from Parkinson’s. In the past year the forum has been overwhelmed by your personal battle. At times it appears that you just wish to bring water to your own mill, not one thread is spared.
All this has (IMHO) brought about a situation where members no longer feel any safety in posting as they are shot down in flames if they, think/post positively or even dare to contradict you.
A sad situation in deed; one that can only cloud and murky the waters of those that battle with DA problems.
May I humbly suggest that you confine your comments regarding DA’s and your personal battle to your numerous threads started by yourself.
(Tantamount to inciting non payment of debits because the law permits this)
Whilst one may have a debit, it can and should (IMHO) be paid off.
There are various ways of doing this without finding loop holes in the legal system.
I can only trust that the book you never fail to mention which; should be coming out at Christmas will find you in a better position to affront those that were hurt by actions that I do not say were entirely due to your own making, but the DA’s that were given to you.
Personally I shall not purchase it. I have read, was forced to read; even plough myself through over 11143 posts that seem to pop up where ever one goes regarding your personal battle.
I may sympathize but there is a limit. Someone needs to inform you that you do not speak for the vast majority of the members on this forum.
In fact at times you post as if you were moderating PD UK.
You often use the word, “We” or “Many”. I assure you, that you do not speak in my name nor do you speak for many people that suffer from Parkinson’s. In the past year the forum has been overwhelmed by your personal battle. At times it appears that you just wish to bring water to your own mill, not one thread is spared.
All this has (IMHO) brought about a situation where members no longer feel any safety in posting as they are shot down in flames if they, think/post positively or even dare to contradict you.
A sad situation in deed; one that can only cloud and murky the waters of those that battle with DA problems.
May I humbly suggest that you confine your comments regarding DA’s and your personal battle to your numerous threads started by yourself.
im not quite sure wots goin on here ,i seem to be so doppy latley tryin to uderstand things not sure if pd or wot is goin on with me,but i see the word fund raisin on this thread and just would like to say ,i do lot of fund raisin for pd ,i try to organize s much as i can then get volenters with pd which some are in chairs some are bit more able bodied but we all join togeather as a group and do wot we intended to do ,raise funds for resurch ,and for our group for a day out i then present steve ford with a cheque for puk and they do wot ever is then needed with it , i try me best and do enjoy wot i do for pd fundrasin,also away from the group the community have donated money for us and my daughter and her freinds done varies things as well.but wot i tryin to say as u no i have pd for 10 half years now and other illnesses as well which puts me in to a chair or good days on sticks and mobility scooter but we are all doin this for one thig and that is to raise money for people with pd and i thought thats wot it was all ment to be about?
