I have read this thread and how interesting ,thanks Ray for finding it.
People sadly have no idea about this disease. Ignorance is bliss. so they say. I hate it when friends say they can do wonderful things today.
When I informed my at work about my PD, they said they knew Michael J Fox had IT. My Area Manager also came to the store where I work as she does every two months to do her store visit.
Her reaction to me was "so where will you be in a years time with this THINGY you have, er whats it called. Could not believe her ignorance to me and will never forget those words.
PB
as you say Posh Bird ignorance . But it so hurtful. They haven't got a clue how it affects you ..
This is why it is so important to bring it to the attention to as many people as we can then future sufferer will be understood and treated more sympathetically .
It is not going to happen overnight but the internetis starting to get to a lot more people .
This is why it is so important to bring it to the attention to as many people as we can then future sufferer will be understood and treated more sympathetically .
It is not going to happen overnight but the internetis starting to get to a lot more people .
I'm with you all when it comes to ignorance and pwp. About a month or so after dx I got a visit from council, during conversation she asked if I'd want into sheltered housing, or railing along hallway then told me council carers can come in, not happy with that proceeded to ask if I'm replacing my 8yr old dog when he goes!! My reply was I'll cross them bridges when I come to them, and ask for help if needed from her!!!
I"ve read these posts with great interest, And love the humour some PWP have, but in critisising people who dont know anything about this damned illness ,,may i ask you. If you hadnt been missfortunate enough to have PD ,how much would we know about it,i for one walked out of my Diagnotice completely unaware of what was to come , and like many got my information from a book ,in another world it may of been us putting our foot init, no offence meant
Hello parkyete
I do agree with what you have said. I also read books and frightened myself to learn this was going to be a long journey.
However it would be better if people in the work place(ie Employers) where more knowledgeable and did a little more research. So they have an understanding of this disease or any other disability for that matter. Having a more sensitive approach to the subject unlike the one I had!!!
PB
I do agree with what you have said. I also read books and frightened myself to learn this was going to be a long journey.
However it would be better if people in the work place(ie Employers) where more knowledgeable and did a little more research. So they have an understanding of this disease or any other disability for that matter. Having a more sensitive approach to the subject unlike the one I had!!!
PB
I know very little about a lot of things e.g. I thought, and still refer to, my bad back as being down to spinabifida. I thought that just as some medical term ending with itis means there is an inflamation e.g. e.g. gastroenteritis means the entrance to your gastro is inflamed (which end that would be I don't know), boabyitis etc. Anyway I thought abifida was the suffix of choice when you had a sore something e.g. ribabifida (sore ribs), nipsy-abifida (Duke of Argyll's), etc.
I keep such ignorance to myself (well, up til now obviously). I wouldn't think to go up to a spina bifida sufferer and say, "were you lying funny last night. Mine's giving me gip too. Maybe its the weather. Loving the chair. Still could be worse. I had a great aunt die in a house fire ... grandfather drank 2 bottles of whisky and smoked 80 a day 'til he were 104, then got hit by a bus. Yep you never know the minute. Still it was nice talking at you".
No, I would never make that mistake again.
I cant help laugh at them. Mental do-gooders who have a healthy dose of hollier than thou about them.
We all should be better educated. Trouble is, people are frightened , unless it's on top of them, or close by, they really don't want to know. Or it involves having three bums.
So they show ignorance and try and empathise. Keep a few parkies leaflets and a Parkinson's charity collection tin handy. They'll be off like a shot. Hang it round your neck, it keeps them away altogether. I was always being jostled and bumped into at train stations until I stood with a collection tin, all I recall from that day was how fresh the air was.
We need to educate ourselves. There are some really thick people out there.
More to be pitied than laughed at.
I keep such ignorance to myself (well, up til now obviously). I wouldn't think to go up to a spina bifida sufferer and say, "were you lying funny last night. Mine's giving me gip too. Maybe its the weather. Loving the chair. Still could be worse. I had a great aunt die in a house fire ... grandfather drank 2 bottles of whisky and smoked 80 a day 'til he were 104, then got hit by a bus. Yep you never know the minute. Still it was nice talking at you".
No, I would never make that mistake again.
I cant help laugh at them. Mental do-gooders who have a healthy dose of hollier than thou about them.
We all should be better educated. Trouble is, people are frightened , unless it's on top of them, or close by, they really don't want to know. Or it involves having three bums.
So they show ignorance and try and empathise. Keep a few parkies leaflets and a Parkinson's charity collection tin handy. They'll be off like a shot. Hang it round your neck, it keeps them away altogether. I was always being jostled and bumped into at train stations until I stood with a collection tin, all I recall from that day was how fresh the air was.
We need to educate ourselves. There are some really thick people out there.
More to be pitied than laughed at.
I was in hospital about 2 tears ago The lady in the next bed to me was glorious. She suffered from cystic fibrosis and laughed out loud when the young intern described her (for all to hear) as spastic
I've got a list of about 10 possible words to put in there, AB. Give us a clue!
my son has down's syndrome. the best comments were
1) dont worry, they dont live long
2) hasnt he got a bit of mongol about him
3) it can be cured with sugar
the only thing to do is laugh.
to follow on from other comments- do we know as much about other conditions as we expect people to know about ours? do we care about other people's illnesses as much as we would like them to care about ours?
sorry if starting to sound like the sermon on the mount.
1) dont worry, they dont live long
2) hasnt he got a bit of mongol about him
3) it can be cured with sugar
the only thing to do is laugh.
to follow on from other comments- do we know as much about other conditions as we expect people to know about ours? do we care about other people's illnesses as much as we would like them to care about ours?
sorry if starting to sound like the sermon on the mount.
There are people who sit at home affraid to go out because of funny looks and what others say. They are prisoners of other peoples ignorance.
Parkinsons awareness week should have been a concerted effort to tell people about Parkinsons, not collect a few hundred pound "for charity". I dont knock the people who get sponsored, but the NHS cuts will wipe out any money collected. We need to do more our selves, and put more effort making people aware! It would then be harder to cut the pd budjet. Our Government can find money to pay for Londons games, hard up bankers, and clean up countries over seas, it should be able to fund the costs of reasearch into pd. But until we rock the boat, and make it an issue, they will ignore us.
It effects me now, and i can not put my life on hold.
Parkinsons awareness week should have been a concerted effort to tell people about Parkinsons, not collect a few hundred pound "for charity". I dont knock the people who get sponsored, but the NHS cuts will wipe out any money collected. We need to do more our selves, and put more effort making people aware! It would then be harder to cut the pd budjet. Our Government can find money to pay for Londons games, hard up bankers, and clean up countries over seas, it should be able to fund the costs of reasearch into pd. But until we rock the boat, and make it an issue, they will ignore us.
It effects me now, and i can not put my life on hold.
Very well said, and welcome!
rant begins of unpopular opinion:
The medical research council spent £758 million on research in 2009/10. Thats quite a lot.
I have my doubts that a cure can be bought. Its a very complicated disease and a lot of very clever people are working full time on it. More money and more people dont always result in more progress.
As for funny looks, that will not go away no matter how much was done towards education. You can't educate the whole country. You just have to brazen it out.
All sorts of people are in the same situation - disfigured, small, tall, fat, in wheelchairs - and people will stare automatically at anyone out of the ordinary.
Who noticed marfan awareness week? or downs syndrome week? or digestive disease week? pd is just one disease amongst hundreds and the public will ignore all of them. pd week is a complete waste of time as far as education or change in behaviour goes.
rant ends.
The medical research council spent £758 million on research in 2009/10. Thats quite a lot.
I have my doubts that a cure can be bought. Its a very complicated disease and a lot of very clever people are working full time on it. More money and more people dont always result in more progress.
As for funny looks, that will not go away no matter how much was done towards education. You can't educate the whole country. You just have to brazen it out.
All sorts of people are in the same situation - disfigured, small, tall, fat, in wheelchairs - and people will stare automatically at anyone out of the ordinary.
Who noticed marfan awareness week? or downs syndrome week? or digestive disease week? pd is just one disease amongst hundreds and the public will ignore all of them. pd week is a complete waste of time as far as education or change in behaviour goes.
rant ends.
Turnip: you say "The medical research council spent £758 million on research in 2009/10." was that on PD? or all research? Wembly stadium cost £798 million so its not a large sum when taken in context.
I agree, "More money and more people dont always result in more progress", but knowing the money is there, without going cap in hand periodically will encourage the very clever people who are working full time on it. But i am not just refering to looking for a cure. excercise is proving to help mobility in pwp, but the classes are full, or being cut, because bean counters dont understand how it helps. I wont go on but there are more examples.
"pd week is a complete waste of time as far as education or change in behaviour goes." Thats because PWP didn't act. only 6 people i know from the local branch did somthing to promote pd awareness.
"You can't educate the whole country. You just have to brazen it out." We may not be able to educate everyone but we should be able to enlighten bodies like the police, hospital staff, and media - 1 tv presenter comes to mind - who havent a clue, Yet claim that they have seen back to the future so are experts. Not every one is strong enough to brazen it out, should we just write them off. What would you say to some one who is unwilling to leave home.. Would you encourage the dunkirk spirit, or tell them it costs too much to bother.
I agree, "More money and more people dont always result in more progress", but knowing the money is there, without going cap in hand periodically will encourage the very clever people who are working full time on it. But i am not just refering to looking for a cure. excercise is proving to help mobility in pwp, but the classes are full, or being cut, because bean counters dont understand how it helps. I wont go on but there are more examples.
"pd week is a complete waste of time as far as education or change in behaviour goes." Thats because PWP didn't act. only 6 people i know from the local branch did somthing to promote pd awareness.
"You can't educate the whole country. You just have to brazen it out." We may not be able to educate everyone but we should be able to enlighten bodies like the police, hospital staff, and media - 1 tv presenter comes to mind - who havent a clue, Yet claim that they have seen back to the future so are experts. Not every one is strong enough to brazen it out, should we just write them off. What would you say to some one who is unwilling to leave home.. Would you encourage the dunkirk spirit, or tell them it costs too much to bother.
ray - the word rhymes with plastic
OIC - LOL 
hi shakey dave
must have been in a bit of a mood yesterday. very good point about educating key people, including some medical people!
though i would still cling on to the idea that there is more likelihood of success in helping people become less sensitive to other people than trying to change the all other people.
must have been in a bit of a mood yesterday. very good point about educating key people, including some medical people!
though i would still cling on to the idea that there is more likelihood of success in helping people become less sensitive to other people than trying to change the all other people.
Hi! Turnip, thanks for the comments,
I suppose the idea of educating every one to accept disabilities or differences, without comment is a bit of a dream, but its the target i would aim for, as anything less is accepting discrimination. In an ideal world it would happen!
Then again, in an ideal world there would be no pd!
I suppose the idea of educating every one to accept disabilities or differences, without comment is a bit of a dream, but its the target i would aim for, as anything less is accepting discrimination. In an ideal world it would happen!
Then again, in an ideal world there would be no pd!
Hi All,
I don't know if you could call this patronising , disappointing, or just plain insensitive !
Some of you may remember a few months ago i went to a new Dance and Exercise class for PWP's. It's great and I've made new friends there as well as the benefit of my movement improving.
Anyway, our teacher, who's a Neurological Physiotherapist as well as a trained dancer, has been offered a 3 year Study and Research program into Dance Therapy and it's benefits for PWP's. I think she'll get a Doctorate at the end of the study.
Of course , this is wonderful news for her and we in her class, as we effectively become 'guinea pigs ' in the study, and feel excited about being in this kind of pioneering role.
For insurance purposes , the university requires our own G.P.'s awareness and assurance of our general fitness level.
I went to see him and ask for his input -- just signature on a consent form.
His response was -- " I don't have time to read all that -- just give me the form "
I think it's so sad that he was in so much of a rush - he probably didn't realise how dismissive he sounded.
As to the poster inviting others to get involved if it appealed, well I didn't bother to ask him if it could go up on the surgery notice board. I gave it to a receptionist on the way out , who said she'd display it " If we've the room". Gee Thanks !
I don't know if you could call this patronising , disappointing, or just plain insensitive !
Some of you may remember a few months ago i went to a new Dance and Exercise class for PWP's. It's great and I've made new friends there as well as the benefit of my movement improving.
Anyway, our teacher, who's a Neurological Physiotherapist as well as a trained dancer, has been offered a 3 year Study and Research program into Dance Therapy and it's benefits for PWP's. I think she'll get a Doctorate at the end of the study.
Of course , this is wonderful news for her and we in her class, as we effectively become 'guinea pigs ' in the study, and feel excited about being in this kind of pioneering role.
For insurance purposes , the university requires our own G.P.'s awareness and assurance of our general fitness level.
I went to see him and ask for his input -- just signature on a consent form.
His response was -- " I don't have time to read all that -- just give me the form "
I think it's so sad that he was in so much of a rush - he probably didn't realise how dismissive he sounded.
As to the poster inviting others to get involved if it appealed, well I didn't bother to ask him if it could go up on the surgery notice board. I gave it to a receptionist on the way out , who said she'd display it " If we've the room". Gee Thanks !
Lorna, I would say that it was just plain darn insensitive and rude. Your GP could have said what he said in a nicer way. I can understand you feeling hurt by both the GP's and receptionist couldn't care less attitude.
Well done to your dance teacher and I hope you have a good time and fun in the process.
Radz x
Well done to your dance teacher and I hope you have a good time and fun in the process.
Radz x
Thank you, Radz.
Sometimes being angry or hurt about something can be a driving force to spur one on.
I'll use my feelings to become perhaps a wonderful shaker and mover !
All the best,
Lorna.
Sometimes being angry or hurt about something can be a driving force to spur one on.
I'll use my feelings to become perhaps a wonderful shaker and mover !
All the best,
Lorna.