I have just heard that there will be someone on the Jeremy Vine show on BBC Radio 2 today discussing life with Parkinson's Disease. The show is on from 12 noon until 2 p.m. Medical items are usually on during the latter part of his show.
Thanks for the heads up on this programme LibraLady I have it on now.
Where are they not talking about the nightmare side affects of the drugs????????
Exactly.
It beggars belief, why when they had air time did they not explain the problems a PD person has instead of talking about swimming in fresh bleeding water
It was nice to hear that lady's husband was cycling and raising funds but I personnally feel that awareness needs to be made also of the OCD's etc and the effect PD has on EVERYONE ie the person living with it and the family caring for them. I would punch the wall but I haven't the enegry
It was nice to hear that lady's husband was cycling and raising funds but I personnally feel that awareness needs to be made also of the OCD's etc and the effect PD has on EVERYONE ie the person living with it and the family caring for them. I would punch the wall but I haven't the enegry
I completely agree. If I had the guts I would love to go on the show and tell them how the drugs have shattered our lives. It doesn't surprise me though - nearly everytime there is something about PD in the media there is an overly positive slant to it. I don't expect it all to be doom and gloom but to be realistic. I have a disabled son and years ago he went to a school specialising in Conductive Education. Whenever there was any media coverage they used to show the most able bodied child. At one stage he went on to a mainstream school and they used to bring him back when there was any media coverage. Just about sums it up. Perhaps we should have got the News of The World on to it? Too late now!
Thank you Libra lady for bringing this broadcast to my attention. Having enjoyed listening to "Cracklin' Rosie" I am then informed that the chief executive of the parliamentary standards commission was diagnosed "out of the blue" and was lucky enough to be referred to a neurologist within a week. Some of us have an inkling & wait years. It is nice to know that he intends to remain in his job for the next 10 years. Some of us without the benefits of secretaries , aides & drivers do not have this luxury
Hi.
It's really wonderful to hear about all those PwP out there cycling and swimming and generally living a full and active life. Donations will probably slow down now, as the general public now know our condition isn't serious at all.
I don't know how they select these wonder patients, but they didn't ask to see me. Surprising that, because I'm very easy to track down - I live in my bedroom. Even a trip down the stairs and up again knackers me for hours.
Nice opportunity wasted. The BBC actually published an article on 10 July 2001, and broadcast a documentary on 11 August 2003 - 10 and 8 years ago respectively - about DA/OCDs, so they're hardly unaware of our problem.
http://news.bbc.co.uk/1/hi/health/1431758.stm
http://news.bbc.co.uk/1/hi/health/3142615.stm
Ray.
It's really wonderful to hear about all those PwP out there cycling and swimming and generally living a full and active life. Donations will probably slow down now, as the general public now know our condition isn't serious at all.
I don't know how they select these wonder patients, but they didn't ask to see me. Surprising that, because I'm very easy to track down - I live in my bedroom. Even a trip down the stairs and up again knackers me for hours.
Nice opportunity wasted. The BBC actually published an article on 10 July 2001, and broadcast a documentary on 11 August 2003 - 10 and 8 years ago respectively - about DA/OCDs, so they're hardly unaware of our problem.
http://news.bbc.co.uk/1/hi/health/1431758.stm
http://news.bbc.co.uk/1/hi/health/3142615.stm
Ray.
.
Two other BBC links re Dopamine Agonists:-
19 April 2007:
http://news.bbc.co.uk/1/hi/health/6572095.stm
3 February 2011:
http://www.bbc.co.uk/news/uk-scotland-glasgow-west-12356147
Ray.
.
Two other BBC links re Dopamine Agonists:-
19 April 2007:
http://news.bbc.co.uk/1/hi/health/6572095.stm
3 February 2011:
http://www.bbc.co.uk/news/uk-scotland-glasgow-west-12356147
Ray.
.
The person being interviewed seems to be avoiding a lot of stress in the day to day management of his illness.
Its generally agreed among neurologists that stress can play a key role in the progression of parkinson's disease. Stress caused from the fallout of OCD side effects due to parkinson's drugs, more often than not leaves an individual with a whole bucket full of problems and stress to cope with for years to come. Problems such as debts, broken relationships, losing your job, along with a BIG black mark too one's good name etc etc. In many cases this ongoing stress leads to a worsening of the symptoms of PD. This whole issue is something that is little understood by the media, or by those who have been lucky enough to avoid the OCD nightmare, or more generally by those on the outside of PD looking in!
Its generally agreed among neurologists that stress can play a key role in the progression of parkinson's disease. Stress caused from the fallout of OCD side effects due to parkinson's drugs, more often than not leaves an individual with a whole bucket full of problems and stress to cope with for years to come. Problems such as debts, broken relationships, losing your job, along with a BIG black mark too one's good name etc etc. In many cases this ongoing stress leads to a worsening of the symptoms of PD. This whole issue is something that is little understood by the media, or by those who have been lucky enough to avoid the OCD nightmare, or more generally by those on the outside of PD looking in!
Everyone with Parkinson's is different and it is a good thing that the newly diagnosed can listen to P.w.P, who are trying to get on with their lives despite having Parkinson's. When I first joined this Forum, when it was still a prototype, there was a member, who despite having had Parkinson's for a very long time and who was very disabled, rejoiced in what he could do and not what he could not do.It was wonderful,humbling and yet uplifting to read his posts.It really heped us when we both were just coming to terms with the diagnosis. Agreed, some peoples lives have been badly affected by Parkinson's and the drugs they have taken, but there are other people who have managed to make a good life for themselves and their voice does not seem to be heard very often on this Forum now.Are they scared of responses like the ones in reaction to this programme? Replies to this posting will perhaps tell us.
.
Hi ECD.
Why on earth would anybody be scared by the fact that some PwP do not have a wonderful, active, enjoyable life?
Is it wrong for observers to note here that for some their lives have been/are a disaster?
You can't keep people blinkered from reality forever!
Ray.
Hi ECD.
Why on earth would anybody be scared by the fact that some PwP do not have a wonderful, active, enjoyable life?
Is it wrong for observers to note here that for some their lives have been/are a disaster?
You can't keep people blinkered from reality forever!
Ray.
I am just reflecting on the fact that rather than being pleased that this gentleman was managing to have a successful life,like many PWP, his broadcast seemed to met with bitterness and sarcasm by those who posted.
Sorry Cutie and thanks for the link.
When you say"reality" R of S you mean your reality.You do not mean my husband's reality.You cannot speak for all people with Parkinson's: you can only talk about your experience. There may be a significant group of P.w.P who have had similar experiences to your own, but there is also a group of P.w.P who have had similar experiences and hold an attitude similar to the gentleman on the broadcast.Their reality is quite different to yours.
Should read;"different from"
.
ECD.
Reality is reality.
The following FACTS constitute reality:
24% of patients taking prescribed DAs experience OCDs.
A large number of these suffer catastrophically, with lives, careers and families destroyed. Patients are left penniless. Scores of such victims are on this forum.
Patients have suffered terribly from prescribed DAs since 1992, if not earlier.
Patients have been tried and convicted for criminal offences committed whilst taking prescribed DAs since 1992, if not earlier.
Patients have been made bankrupt as a result of their actions whilst taking prescribed DAs since 1993, if not earlier.
Civil actions for compensation related to prescribed DA side effects have been going on since 2001, if not earlier.
The BBC has been reporting that prescribed DAs were causing personality & behavioural changes, out-of-control gambling and serious libido problems since 2001, if not earlier.
That is reality.
For an organisation like the BBC - with all that knowledge and data about DA side effects going back about 30 years - to present a TV or Radio programme purporting to present the lives of PwP today, but without even mentioning any of the above is scandalous.
I have always defended the right of those not affected by OCDs to continue receiving their DA supplies. There is no conflict of interests or animosity, we all want the same thing in the end. Why on earth some contributors seem to see those of us who want grave injustices rectified as a threat, beats me.
But the BBC's whitewashing and sweeping-under-the-carpet really is scurrilous.
Ray.
ECD.
Reality is reality.
The following FACTS constitute reality:
24% of patients taking prescribed DAs experience OCDs.
A large number of these suffer catastrophically, with lives, careers and families destroyed. Patients are left penniless. Scores of such victims are on this forum.
Patients have suffered terribly from prescribed DAs since 1992, if not earlier.
Patients have been tried and convicted for criminal offences committed whilst taking prescribed DAs since 1992, if not earlier.
Patients have been made bankrupt as a result of their actions whilst taking prescribed DAs since 1993, if not earlier.
Civil actions for compensation related to prescribed DA side effects have been going on since 2001, if not earlier.
The BBC has been reporting that prescribed DAs were causing personality & behavioural changes, out-of-control gambling and serious libido problems since 2001, if not earlier.
That is reality.
For an organisation like the BBC - with all that knowledge and data about DA side effects going back about 30 years - to present a TV or Radio programme purporting to present the lives of PwP today, but without even mentioning any of the above is scandalous.
I have always defended the right of those not affected by OCDs to continue receiving their DA supplies. There is no conflict of interests or animosity, we all want the same thing in the end. Why on earth some contributors seem to see those of us who want grave injustices rectified as a threat, beats me.
But the BBC's whitewashing and sweeping-under-the-carpet really is scurrilous.
Ray.
.
CORRECTION OF THE DAY.
"going back about 30 years" should, of course, have read "going back about 20 years".
Well spotted!
.
CORRECTION OF THE DAY.
"going back about 30 years" should, of course, have read "going back about 20 years".
Well spotted!
.
Good morning ECD, how are you today? 