Thank u xxx
Hi Vicki
I think your over reacting a bit with your comments addressed to me?
I'm not intent on upsetting you as you seem to suggest! Nor do i accept i have an attitude which is uncalled for! I merely expressed my own conclusions on what i observed from public feedback about the programme. I'm sure your Facebook wall is full of positive support and admiration for the courage you showed in making the documentary. Likewise you have received lots of praise and support from fellow PD members of this forum, including me if you choose to read all my posts. However the simple fact remains, outside the population of people on this forum and your Facebook friends, feedback on the programme as a whole has been negative.
You asked, what have i done to help raise awareness about OCD side effects? Well i don't feel i need to justify myself? However if you want confirmation of my efforts to this cause, then i suggest you talk to just about anyone at PUK because they have got to know me well over the last couple of years! What i will say though is, there is only way we will achieve a positive outcome which makes everyone happy, eg those impacted by OCD as well as those who have not! And that is though education and raising awareness via a national campaign sponsored by PUK, and aimed directly at the medical profession and drug companies. For me this is a better journey to embark upon rather than rely on the roller-coaster of a media ride.
For the record i do applaud your courage in bearing your heart and soul to the world, i think your one very brave lady. Anyway at least they were able to put your story out before 8pm. If it had been my OCD story they were doing, it would of required a health warning (watching this can be damaging to one's health) along with a parental pin number to view it......
I hope things work out for you and your hubby. In many ways he is a very lucky man to have a wife who is not only a great mum, but also a fighter who wont let this awful illness beat her.
all the best
Stephen
I think your over reacting a bit with your comments addressed to me?
I'm not intent on upsetting you as you seem to suggest! Nor do i accept i have an attitude which is uncalled for! I merely expressed my own conclusions on what i observed from public feedback about the programme. I'm sure your Facebook wall is full of positive support and admiration for the courage you showed in making the documentary. Likewise you have received lots of praise and support from fellow PD members of this forum, including me if you choose to read all my posts. However the simple fact remains, outside the population of people on this forum and your Facebook friends, feedback on the programme as a whole has been negative.
You asked, what have i done to help raise awareness about OCD side effects? Well i don't feel i need to justify myself? However if you want confirmation of my efforts to this cause, then i suggest you talk to just about anyone at PUK because they have got to know me well over the last couple of years! What i will say though is, there is only way we will achieve a positive outcome which makes everyone happy, eg those impacted by OCD as well as those who have not! And that is though education and raising awareness via a national campaign sponsored by PUK, and aimed directly at the medical profession and drug companies. For me this is a better journey to embark upon rather than rely on the roller-coaster of a media ride.
For the record i do applaud your courage in bearing your heart and soul to the world, i think your one very brave lady. Anyway at least they were able to put your story out before 8pm. If it had been my OCD story they were doing, it would of required a health warning (watching this can be damaging to one's health) along with a parental pin number to view it......
I hope things work out for you and your hubby. In many ways he is a very lucky man to have a wife who is not only a great mum, but also a fighter who wont let this awful illness beat her.
all the best
Stephen
stephen - i admitted to over reacting - im a diva drama queen pole dancing parkie extroidinaire as well as a fag ash lil torrett like alcoholic shopaholic nymphette - lol- quite exhausting really who despite the outside appearance has little self confidence wen it comes down to it - and constantly tries to people please - why ? feck knows !
btw wor kenny is not my hubby - after 23 yrs maybe we shud go for it!!!
btw wor kenny is not my hubby - after 23 yrs maybe we shud go for it!!!
Dear Vicky thank you, thank you ,thank you I left the forum but after watching the program and seeing your determination to kick PD up the backside,I'm back.It was your story but our fight and only ourselves who suffer with PD know how hard it is to carry on.Your husband and Im sure like my own takes a lot of your anger.
I would just like to add that E H comments were out of order and I think he should apologise.Thank you once again Vicky LOL Angel4u
I would just like to add that E H comments were out of order and I think he should apologise.Thank you once again Vicky LOL Angel4u
What a shame that the side-effects of agonists are so dreadful for so many users. It's time neurologists and industry took this seriously and look for alternatives. Also a shame that when alternatives with no side effects are offered no-one is interested. Neurologists will not take the lead in new ideas in case the industry stops supporting them.
see www.brainhelp.info
see www.brainhelp.info
the 29 seconds on youtube looked very good - anybody going to copy more?
Turnip (and anyone else who missed the broadcast), the film can be seen "on demand" on the Internet:
http://www.channel4.com/programmes/sex-lies-and-parkinsons/4od
I completely forgot to watch or record the programme (despite being vaguely aware of it thanks to the auspices of the lovely Boo and her blog), so I have availled myself of the 4od service today.
You can read my full review/response here:
http://bloggingwithparkinsons.wordpress.com/2011/08/15/still-time-to-watch-sex-lies-and-parkinsons-on-channel-4/
but, as I'm sure you're all busy people and might not want to look at yet another of my log posts, I'll say a bit here as well.
I thought it was a good film. Yes, perhaps there was a hint of sensationalism (in the title if nowhere else), but that was nothing compared to the appalling article in The People (which was so badly written, to boot, that I almost felt ill). I gather from random smples of comments here (and elsewhere) that it was not universally well recieved. I think that that may even be a good thing, in that it has sparked debate, but I also think that it is important to remember that this was a mere half hour long, that the topic is immensely complicated, and tht this was never (I imagine) supposed to be anything more than one person's story. The potential for controversy got the film shown. At a prime viewing hour, on Friday. Better, I think - even for those who did not like the film - to have this out there than some ponderous semi-academic programme in the wee small hours. Or worse - on daytime TV (does anyone take daytime TV seriously?).
And I, for one, am immensely pleased to see Young Onset Parkinson's brought to the public attention. Certainly beats its use as a plot device in Love and Other Drugs.
http://www.channel4.com/programmes/sex-lies-and-parkinsons/4od
I completely forgot to watch or record the programme (despite being vaguely aware of it thanks to the auspices of the lovely Boo and her blog), so I have availled myself of the 4od service today.
You can read my full review/response here:
http://bloggingwithparkinsons.wordpress.com/2011/08/15/still-time-to-watch-sex-lies-and-parkinsons-on-channel-4/
but, as I'm sure you're all busy people and might not want to look at yet another of my log posts, I'll say a bit here as well.
I thought it was a good film. Yes, perhaps there was a hint of sensationalism (in the title if nowhere else), but that was nothing compared to the appalling article in The People (which was so badly written, to boot, that I almost felt ill). I gather from random smples of comments here (and elsewhere) that it was not universally well recieved. I think that that may even be a good thing, in that it has sparked debate, but I also think that it is important to remember that this was a mere half hour long, that the topic is immensely complicated, and tht this was never (I imagine) supposed to be anything more than one person's story. The potential for controversy got the film shown. At a prime viewing hour, on Friday. Better, I think - even for those who did not like the film - to have this out there than some ponderous semi-academic programme in the wee small hours. Or worse - on daytime TV (does anyone take daytime TV seriously?).
And I, for one, am immensely pleased to see Young Onset Parkinson's brought to the public attention. Certainly beats its use as a plot device in Love and Other Drugs.
That should have been "blog posts", not "log posts".
Hi, have read all of this very interesting debate about Vicki's documentary, and feel that there maybe some things not covered in the conversation. Channel 4 documentaries go out to a general audience, who as we all know mostly do not have a clue about PD, let alone about the details of how we are affected, and looking at it objectively this was a very good way of letting people know how deeply it can affect someone, not just in the disease, but that the treatments themselves can be very cruel.
Hypersexuality, spending compulsions, gambling etc. are cruel not just to the person but to the family. The documentary shows this exceptionally well, it is first and foremost a personal account. There were two other areas that I thought it did really well on, the first in portraying Vicki as a health professional with PD doing a good job, and later in the programme how she found attending appointments distressing and depressing. I was very moved by this, and by some of her own discussion of her situation. Medications were shown large enough to read the labels. There are probably issues to contend with if they had been singled out and discussed, the pharmaceutical industry is very protective of it's products, which could have made it more complex to get it to screen. This was not a programme about PD itself, or DA's. It was about the experience of living with PD and the impact on Vicki's life.
While it left me feeling as though there could have been more information about PD, I had to be quite objective about it. Perhaps this was enough information in one chunk for the average viewer. One thing I do know is that there are few programmes now that portray people with health conditions as victims, the public at large find these a turn off, and suffer from a kind of charity fatigue. They are engaged by an interesting story though, and 'S,L & P' scored on that, as I am sure very few people realised that treatments can be as bad as the disease. It is a sad but true fact that programmes have to fit in with what the public will watch.......
That Vicki is still having to deal with all of this, not just at home but at work too, makes it all the more courageous. It is a big deal, opening your life up to public scrutiny.......
One programme is never, ever going to say it for us all, we are too diverse, PD cannot be made to fit one picture, so the documentary is one starting point, and if it helps one other person who has PD and is suffering from similar side effects, and has no idea what is happening to them, then it will have done it's work. As it is I think it will help many YO people and their families, come to terms with what can be devastating changes, especially if they come out of the blue, with little or no warning. Vicki's own upbeat attitude will help with this, she shows that there is a way through. The non-judgemental stance of the editing means that it works as an educational programme. I would hope that it will be used at some point to help educate health workers, and to inform people of the effects of DA's.
Raising awareness of PD is vital, Vicki's film is one strand, everyone can contribute in some way, we can all be advocates, and the best way is to be open and honest about PD. Contrary to some of the comments I think that PD can be dehumanising - it does change the way people see us. Fighting back, in our lives, and for our right to be seen as the people we are is very important.
Thanks Vicki, for being so honest.
Lindy
Hypersexuality, spending compulsions, gambling etc. are cruel not just to the person but to the family. The documentary shows this exceptionally well, it is first and foremost a personal account. There were two other areas that I thought it did really well on, the first in portraying Vicki as a health professional with PD doing a good job, and later in the programme how she found attending appointments distressing and depressing. I was very moved by this, and by some of her own discussion of her situation. Medications were shown large enough to read the labels. There are probably issues to contend with if they had been singled out and discussed, the pharmaceutical industry is very protective of it's products, which could have made it more complex to get it to screen. This was not a programme about PD itself, or DA's. It was about the experience of living with PD and the impact on Vicki's life.
While it left me feeling as though there could have been more information about PD, I had to be quite objective about it. Perhaps this was enough information in one chunk for the average viewer. One thing I do know is that there are few programmes now that portray people with health conditions as victims, the public at large find these a turn off, and suffer from a kind of charity fatigue. They are engaged by an interesting story though, and 'S,L & P' scored on that, as I am sure very few people realised that treatments can be as bad as the disease. It is a sad but true fact that programmes have to fit in with what the public will watch.......
That Vicki is still having to deal with all of this, not just at home but at work too, makes it all the more courageous. It is a big deal, opening your life up to public scrutiny.......
One programme is never, ever going to say it for us all, we are too diverse, PD cannot be made to fit one picture, so the documentary is one starting point, and if it helps one other person who has PD and is suffering from similar side effects, and has no idea what is happening to them, then it will have done it's work. As it is I think it will help many YO people and their families, come to terms with what can be devastating changes, especially if they come out of the blue, with little or no warning. Vicki's own upbeat attitude will help with this, she shows that there is a way through. The non-judgemental stance of the editing means that it works as an educational programme. I would hope that it will be used at some point to help educate health workers, and to inform people of the effects of DA's.
Raising awareness of PD is vital, Vicki's film is one strand, everyone can contribute in some way, we can all be advocates, and the best way is to be open and honest about PD. Contrary to some of the comments I think that PD can be dehumanising - it does change the way people see us. Fighting back, in our lives, and for our right to be seen as the people we are is very important.
Thanks Vicki, for being so honest.
Lindy
Well put, Lindy. There are many PD-related issues which I'd love to get on TV, but this documentary was not the place for that. It was about one family's ordeal, and in my opinion this was covered very well.
Congrats, Vicki, thanks for having the guts.
Congrats, Vicki, thanks for having the guts.
welcome back ray.
mrs.t.
mrs.t.
the programmes may not educate those who know absolutely nothing about PD & OCD but they certainly served to convince a somewhat sceptical O/H. The neuro had only mentioned gambling,. O/H had noticed the number of parcels being delivered, but someone ( a carer) had told us that shopping only becomes a problem when the house becomes piled high with unopened boxes.
So I am grateful.
So I am grateful.
This subject and allied issues ..has certainly woken up and stirred people to
comment on the programme..Dewey ..Boo and no doubt others of a similar mind
I am with you.. I do not doubt for one moment it took a considerate amount of courage and the subject matter for Vicki to put herself up for the programme.. but as mentioned, some of the production team have shall we say have had a number of years experience of making contraversial type of documentries with predictable results and was not going to look at the subject matter through ..rose tinted glasses..(but a little bit of innocents abroad springs to mind perhaps a little naieve) that .. courtesy of editing the footage was going to reflect things on an even keel as it were
Regards to Vicki & family..and to all fellow ..compadres living with P.D.
Ian (M)
comment on the programme..Dewey ..Boo and no doubt others of a similar mind
I am with you.. I do not doubt for one moment it took a considerate amount of courage and the subject matter for Vicki to put herself up for the programme.. but as mentioned, some of the production team have shall we say have had a number of years experience of making contraversial type of documentries with predictable results and was not going to look at the subject matter through ..rose tinted glasses..(but a little bit of innocents abroad springs to mind perhaps a little naieve) that .. courtesy of editing the footage was going to reflect things on an even keel as it were
Regards to Vicki & family..and to all fellow ..compadres living with P.D.
Ian (M)
thanks mrs t
x
x
haeray mai (the forums first pun in maori?)
unfortunately channel 4 iplayer programmes only visible in uk unless try and use a proxy server.
have asked ABC if they are showing it in australia.
unfortunately channel 4 iplayer programmes only visible in uk unless try and use a proxy server.
have asked ABC if they are showing it in australia.
Well it's Going to Germany - nice as it's country of my birth - my mum is german
As for oz- I spent 6 happy months in WA and Queensland wen I was 18 - affectionately known as the pissed pom- lol
As for oz- I spent 6 happy months in WA and Queensland wen I was 18 - affectionately known as the pissed pom- lol
Hi, I found the doc on you tube today perhaps you could search for it there.
Vicki if your still about, I read your blogg today and have to say I liked your way of talking, it's very funny yet grips your heart strings. Please keep well, love to you and your family.
Radz xx
Vicki if your still about, I read your blogg today and have to say I liked your way of talking, it's very funny yet grips your heart strings. Please keep well, love to you and your family.
Radz xx
Ahh x cheers hinny xxx it's my baby - love writing it - again from the heart xx
What sort of time do you call this? You've got PD, you're supposed to be old and boring!
Ha also total insomniac - u can tell times of stress by how baggy eyes are on film !
Need to say the amount of folk who have thanked and congratulated me far outweighs any negativity
These r not only fellow wobblies but rellies, lots of teenagers with affected parents - I am so proud of me today for being their advocate. Of course my pd doesn't reflect all parkies - remember it's a "designer disease" - rather have a prada handbag personally
The issue of parkies has never been discussed so much or as openly / either good or bad it's being talked about
I honestly thought the doc wud pass by largely unoticed.... Wrong!
So kiss my bodacious butt.... I've done what I wanted- to bring pd out of the closet
Ps anybody else wanting or thinking about sending vicious and nasty private messages to me, think again! Do not appreciate it and hate cowardly bullies - I will expose u for the slime u r - you have been warned
Need to say the amount of folk who have thanked and congratulated me far outweighs any negativity
These r not only fellow wobblies but rellies, lots of teenagers with affected parents - I am so proud of me today for being their advocate. Of course my pd doesn't reflect all parkies - remember it's a "designer disease" - rather have a prada handbag personally
The issue of parkies has never been discussed so much or as openly / either good or bad it's being talked about
I honestly thought the doc wud pass by largely unoticed.... Wrong!
So kiss my bodacious butt.... I've done what I wanted- to bring pd out of the closet
Ps anybody else wanting or thinking about sending vicious and nasty private messages to me, think again! Do not appreciate it and hate cowardly bullies - I will expose u for the slime u r - you have been warned