I really don't understand why some members on here waste their time by posting items which they ought to know beforehand that the moderators would delete.
Jem, I think merve does it to wind up the moderator.
We are the ones who have to spread awareness of Parkinson's. I have taken posters into GP surgeries, Libraires, Tourist Offices and anywhere else where i think people will read them. Many Volunteers with Parkinson's visit GP's, Hospitals, Health Centers, Care and Nursing homes informing and educating. The spreading awareness of Parkinson's won't just happen on its own. It will take time and effort from all of us in what ever way we can. If you can't get out there then contact your local MP and see what they can do for you. If we don't talk about it nobody else will.
We are the ones who have to spread awareness of Parkinson's. I have taken posters into GP surgeries, Libraires, Tourist Offices and anywhere else where i think people will read them. Many Volunteers with Parkinson's visit GP's, Hospitals, Health Centers, Care and Nursing homes informing and educating. The spreading awareness of Parkinson's won't just happen on its own. It will take time and effort from all of us in what ever way we can. If you can't get out there then contact your local MP and see what they can do for you. If we don't talk about it nobody else will.
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That is so true, smileyparky. Who better to talk and educate about Parkinson’s than all of us whose lives are directly touched by it?
Elsewhere on this forum people discuss how they are not comfortable telling others about their disease. I totally sympathize on a personal and individual level (particularly for the newly diagnosed who are struggling to come to terms with it), but as a group we must let people around us know what we have and let them see how it affects us. I am only married to a PwP so I accept that there are issues I probably can’t fully appreciate, but surely hiding and disguising the disease can’t be good or helpful in the long run.
So smileyparky distributes posters and leaflets in the local community. Somebody (I think it was John E) said in another thread that they wear a small PD badge - such a brilliant and simple idea, and a discrete invitation to strangers to ask and learn. My husband and I write a weekly blog about life with PD which we push on everyone we have ever known, and on some we have never known (the address has no triple w’s, just straight into the name pd-unplugged dot blogspot dot com). And just now I saw a new thread where somebody asked about getting a collection tin to keep at their work.
There are a thousand ways of raising awareness and increasing understanding, and most of them don’t rely on expensive TV ads.
All the best,
Marie
Elsewhere on this forum people discuss how they are not comfortable telling others about their disease. I totally sympathize on a personal and individual level (particularly for the newly diagnosed who are struggling to come to terms with it), but as a group we must let people around us know what we have and let them see how it affects us. I am only married to a PwP so I accept that there are issues I probably can’t fully appreciate, but surely hiding and disguising the disease can’t be good or helpful in the long run.
So smileyparky distributes posters and leaflets in the local community. Somebody (I think it was John E) said in another thread that they wear a small PD badge - such a brilliant and simple idea, and a discrete invitation to strangers to ask and learn. My husband and I write a weekly blog about life with PD which we push on everyone we have ever known, and on some we have never known (the address has no triple w’s, just straight into the name pd-unplugged dot blogspot dot com). And just now I saw a new thread where somebody asked about getting a collection tin to keep at their work.
There are a thousand ways of raising awareness and increasing understanding, and most of them don’t rely on expensive TV ads.
All the best,
Marie
Hi Marie.
Some people do a great job with collection tins and library visits, etc, but I can honestly say I've personally NEVER seen a PD-related poster ANYWHERE apart from PDS offices or events. Not in doctors' waiting rooms, pharmacists, hospitals, libraries or travel offices, or in public view at bus/train stations, subways or street hoardings.
We NEVER get a mention on TV when stars win money for their favourite charities, big events take place like "Feed the world" or popular personalities do "fun runs" etc, and I've only heard us mentioned in documentaries when there's a dopamine agonist gambling scandal or somesuch. We are completely invisible to the public, and I'd guarantee any survey of the man in the street would show 95% knowing NOTHING about our condition other than perhaps that we shake a bit.
You suggest that TV advertising is too expensive, but all the other big charities disagree with you. Not only can you educate millions of people in one go, but they bring in stacks of donations. The cost is irrelevant. If a TV ad campaign were to cost £10 million that would be fine if it brought in £20 million. All the others must find it cost effective.
Take care,
Merve.
p.s. I think you mean "discreet", not "discrete". Their meanings are totally different.
Some people do a great job with collection tins and library visits, etc, but I can honestly say I've personally NEVER seen a PD-related poster ANYWHERE apart from PDS offices or events. Not in doctors' waiting rooms, pharmacists, hospitals, libraries or travel offices, or in public view at bus/train stations, subways or street hoardings.
We NEVER get a mention on TV when stars win money for their favourite charities, big events take place like "Feed the world" or popular personalities do "fun runs" etc, and I've only heard us mentioned in documentaries when there's a dopamine agonist gambling scandal or somesuch. We are completely invisible to the public, and I'd guarantee any survey of the man in the street would show 95% knowing NOTHING about our condition other than perhaps that we shake a bit.
You suggest that TV advertising is too expensive, but all the other big charities disagree with you. Not only can you educate millions of people in one go, but they bring in stacks of donations. The cost is irrelevant. If a TV ad campaign were to cost £10 million that would be fine if it brought in £20 million. All the others must find it cost effective.
Take care,
Merve.
p.s. I think you mean "discreet", not "discrete". Their meanings are totally different.
post deleted
Hi Merve,
Thanks for the spell-check, that’s just mervellous.
I’m not saying TV ads are too expensive, just that they are not the only means of communicating. I firmly believe that knowing somebody – a friend, colleague, neighbour, someone from PTA or he Star Trek fanciers’ association – who has PD and is willing to talk about it can lead to a much deeper understanding than any media ad. On the other hand, such a small-scale approach will never yield large sums of money for research.
Both approaches have their place and their uses.
All the best,
Marie
Thanks for the spell-check, that’s just mervellous.
I’m not saying TV ads are too expensive, just that they are not the only means of communicating. I firmly believe that knowing somebody – a friend, colleague, neighbour, someone from PTA or he Star Trek fanciers’ association – who has PD and is willing to talk about it can lead to a much deeper understanding than any media ad. On the other hand, such a small-scale approach will never yield large sums of money for research.
Both approaches have their place and their uses.
All the best,
Marie
I have been following this discussion with interest but unfortunately Merve can no longer contribute to this thread as he has been suspended. Presumably I can still join in the debate (although I have had an unsolicited email from the Moderator which
to my confused mind strongly hinted of bullying).
I have done my fair share of tin-rattling, Partying for Parkinsons, giving out leaflets etc. but even that wouldn't come anywhere near a celebrity backing or a good-sized donation from a lottery winner.
I consider pd to be a life-long deteriorating condition that merits the understanding of the general public, but how are they to comprehend the intricacies of the illness if there is no large-scale t.v. and newspaper publicity? As MarieL is a Trustee of our society can I beg her to push for resources to be focussed on this area please?
to my confused mind strongly hinted of bullying).
I have done my fair share of tin-rattling, Partying for Parkinsons, giving out leaflets etc. but even that wouldn't come anywhere near a celebrity backing or a good-sized donation from a lottery winner.
I consider pd to be a life-long deteriorating condition that merits the understanding of the general public, but how are they to comprehend the intricacies of the illness if there is no large-scale t.v. and newspaper publicity? As MarieL is a Trustee of our society can I beg her to push for resources to be focussed on this area please?
Sorry, Mary, I'm not a trustee, just an ordinary member.
Best,
Marie
Best,
Marie
My mistake MarieL, must have got you mixed up with someone else, sorry.
Has merve been told to go????
post deleted
That was rather cruel Kevin and I feel responsible for having mentioned that Merve has been suspended.
You and I have been on this and the old forum for many years. I would like you to re-read your posting of 1st Jan. 2009 14.32pm where you suggest a more liberal attitude would be better on the forum. Please let your present contributions be constructive rather than destructive.
You and I have been on this and the old forum for many years. I would like you to re-read your posting of 1st Jan. 2009 14.32pm where you suggest a more liberal attitude would be better on the forum. Please let your present contributions be constructive rather than destructive.
I think alot of people don't care what Parkinsons is or how it affects sufferers, because they are too busy with their own lives. I have also found that some find it uncomfortable to talk about when I have tried to help them understand more about Parkinsons. A couple of years ago, I organised a fund raising event. In the fundraising pack which was sent to me by the PDS, were a couple of posters. I gave a poster to my local gp surgery and asked if they would put it up on their noticeboard. The Receptionist told me she would ask her Manager. The poster was not put up.
Hi everybody
Ilook through the forum every now and them - and was delighted to see a lively debate being entered into.
I gather there is a rebranding exercise going on - good luck to Steve and the professionals at Head office.
i gather this launch is going to be part of Parkinsons Awreness Week.
I would like to ask Steve . who are they trying to make aware? and what is their message?
What is their criteria for success? Raising more money for drug research?
Is it raising awareness amongst the general public about the diffferent ways Parkys can affect you?
Is it raising awareness amongst clinicians about the diffferent ways Parkys can affect you?
Is and making some clinicians aware that a joined up approach when dealing with people who have just been diagnosed would alleviate a lot of suffereing ?
What happens during the other 51 weeks of the year?
Steve, lets go for it and hsve an awareness year! Lets start by diverting some money into qualitative reseach about the needs and wants of those of those of us with Parkys.
I kindly ask if Steve would post a list of the qualitaive research projects being funded by the PDS or any other bodies in the UK.
In particular I would like to know what,if any, qualitative research is being carried out into the lives of younger people with Parkinson's (say those who contract it under the age of 60.) If there has been, or their is, research being carried out then that is great. If not may I suggest that by undertaking research incorporating "in depth interviews" rather than a survey based research it would give a clearer picture of the quality of our lives as seen through the eyes of the Pwp, our extended families, our friends and how we are perceived by society in general.
Marketing isn't all about a fancy communication plan -meither is it rocket science, in fsct it is mostly common sense. It's about knowing your product, or rather researching the needs and wants of your market, then segmenting it to ensure tha you offer a specific product that is appropriate to your customers specific needs. Are we and our families the PDS's potential customers, (sorry clients)? If so without simply relying on anecdotal evidence, how does the PDS gathr its markt reserch to make sure that it understands its customer base, and possibly more inportantly, this research could help to discover what needs to be done to assist the ovewhelming number of PwP who don;t come anywhere near the society. - i think you;ll find that it needs more than a new logo.
This has been written with thr intention of being postive
- parky's needs to be understood by society - but we have to be aware ourselves what it is !!!
Ilook through the forum every now and them - and was delighted to see a lively debate being entered into.
I gather there is a rebranding exercise going on - good luck to Steve and the professionals at Head office.
i gather this launch is going to be part of Parkinsons Awreness Week.
I would like to ask Steve . who are they trying to make aware? and what is their message?
What is their criteria for success? Raising more money for drug research?
Is it raising awareness amongst the general public about the diffferent ways Parkys can affect you?
Is it raising awareness amongst clinicians about the diffferent ways Parkys can affect you?
Is and making some clinicians aware that a joined up approach when dealing with people who have just been diagnosed would alleviate a lot of suffereing ?
What happens during the other 51 weeks of the year?
Steve, lets go for it and hsve an awareness year! Lets start by diverting some money into qualitative reseach about the needs and wants of those of those of us with Parkys.
I kindly ask if Steve would post a list of the qualitaive research projects being funded by the PDS or any other bodies in the UK.
In particular I would like to know what,if any, qualitative research is being carried out into the lives of younger people with Parkinson's (say those who contract it under the age of 60.) If there has been, or their is, research being carried out then that is great. If not may I suggest that by undertaking research incorporating "in depth interviews" rather than a survey based research it would give a clearer picture of the quality of our lives as seen through the eyes of the Pwp, our extended families, our friends and how we are perceived by society in general.
Marketing isn't all about a fancy communication plan -meither is it rocket science, in fsct it is mostly common sense. It's about knowing your product, or rather researching the needs and wants of your market, then segmenting it to ensure tha you offer a specific product that is appropriate to your customers specific needs. Are we and our families the PDS's potential customers, (sorry clients)? If so without simply relying on anecdotal evidence, how does the PDS gathr its markt reserch to make sure that it understands its customer base, and possibly more inportantly, this research could help to discover what needs to be done to assist the ovewhelming number of PwP who don;t come anywhere near the society. - i think you;ll find that it needs more than a new logo.
This has been written with thr intention of being postive
- parky's needs to be understood by society - but we have to be aware ourselves what it is !!!
Can someone please tell me where I can get a PD awareness poster from ?
I would like to take one to my local doctors surgery.
When I visit I see no mention of PD at all on the walls but plenty of other conditions highlighted.
My Gp seems to have little knowledge of the condition.
Any help with a poster would be gratefully received.
Thanks.
Kram
I would like to take one to my local doctors surgery.
When I visit I see no mention of PD at all on the walls but plenty of other conditions highlighted.
My Gp seems to have little knowledge of the condition.
Any help with a poster would be gratefully received.
Thanks.
Kram
I really did try to help you Kram, but after going thru HOME & searching, then ABOUT PARKINSON'S, then SUPPORT US, the only reference I could find to a poster was the 'Get it on Time', '40 years of Progress (P973), and 'Party for Parkinson's posters.
I went thru all the publication section too.
I hope someone else will be able to help you as I would like to take some to local hospital and doctor and dentist surgeries too.
I went thru all the publication section too.
I hope someone else will be able to help you as I would like to take some to local hospital and doctor and dentist surgeries too.
MaryLlainwen
Many thanks for looking.
Maybe this is why you don't see any posters for PD awareness in your local doctors ??
Kram
Many thanks for looking.
Maybe this is why you don't see any posters for PD awareness in your local doctors ??
Kram
Kram
Just a thought but can we have a contest to design a new poster ?
Kram
Just a thought but can we have a contest to design a new poster ?
Kram
hello can i just say that have had pd 1year now came on stie to see wh
ats going on seems some pepole are overbroad with things they say as i have said cant put things as good as some of yous but are we in the same boat and we should not be picking holes in each otheryes we all have our own vies about everything like he can do runs walks ect well i glad that yous are well to d=do this but why pepole have to have a pop at these i dont uderstand if we all had same idears would life be boreing so come on lets get and pull togther and no iam not mangment or enything like that just a man who a bit fed up of in fighting think we have enough to cope with
ats going on seems some pepole are overbroad with things they say as i have said cant put things as good as some of yous but are we in the same boat and we should not be picking holes in each otheryes we all have our own vies about everything like he can do runs walks ect well i glad that yous are well to d=do this but why pepole have to have a pop at these i dont uderstand if we all had same idears would life be boreing so come on lets get and pull togther and no iam not mangment or enything like that just a man who a bit fed up of in fighting think we have enough to cope with