We're starting to plan for Parkinson's Awareness Week 2015 and want to hear your views.
Why do you think raising awareness of Parkinson's is important? And what difference would it make to you and your daily life if people were more aware of the condition?
Thank you in advance!
If Parky patients do not scream and shout and other groups DO scream and shout,then the other groups get the resources, the research spending, the developments and treatments.
I wish it were not so, but the world is not a fair place.
Indeed. But more - Mosie could have pointed to their own story of being mistaken for drunk (?) to show why awareness of PD is so important. We need to know that others aren't making wrong assumptions about us all the time, that we are treated fairly and without being embarassed. It'd difficult enough dealing with our own issues without having to deal with other people's issues about us.
(I think that makes sense .. .)
I think it's still seen/perceived as a old age persons Illness.
Yet Many on here are still relatively Young,
Many of my friends don't realise it does not only effect a stereo type of old age, I have read there maybe a increase of 30% of diagnosis in future years, perhaps some of my younger friends will make up some of that 30% ?? and some my age/generation in future years.
I think Parkinsons Uk should be shouting about the work they are doing to improve peoples lives who are suffering from this Disease. We lost our Dad last October due to the symptoms of Parkinsons. We all know that Cancer is a devastating disease but Parkinsons is devastating to the patients and their families, we would like to see Parkinson UK charity shops other charities have them, this would help bring in extra money.
Raising awareness is so important. I attended a number of seminars last year organised by Parkinson's UK One of the delights for me was that everyone there knew about Parkinsons. There was no need for me to start with a long explanation of what the bleeding condition was etc etc. What a relief!!
Most people are not aware of the diverse range of different symptoms associated with the condition besides tremor. If only that was all we had to put up with. I suspect that most PWPs are somewhat embarrassed by their symptoms and do not socialise as much as they should so it remains, to some extent, a hidden condition.
However, recently there have been a number of celebrities diagnosed with Parkinson's and hopefully this will prompt people to discover more and learn how disabling an and distressing it can be in the advanced stages.
Plenty of info at the click of a mouse.
I read articles from time to time in the press that state that some well known person has died from Parkinsons. It infuriates me!!!!!!!!!!!! It must also frighten the newly diagnosed to death!
I challenged one such writer, Ephraim Hardcastle of the Daily Mail regarding this matter and did not even have the courtesy of a reply after he stated, in one of columns, that someone had died from Parkinsons.
Maybe educating the press would help in educating Joe Public.
Another bone of contention is the publication of articles on the new cure for Parkinsons. I am often contacted by friends who have read the same as I have and they think that a cure is now around the corner. These article have been appearing since my OH was diagnosed 16 years ago.
Irresponsible and uninformed articles by journalists, who have no idea what the facts are, damage public conception of Parkinsons.
Therefore I believe that next year PUK should make a huge effort to educate the press; get a fact sheet out to every national and local newpaper and ask them to contact PUK before they publish any further articles to ascertain the true facts. If this is not possible then PUK should actively respond to spurious articles by a letter to the paper involved and ask that any incorrect information be retracted and corrected.
Admin? Any thoughts on my post??? Or is it the same as your response to, 'pies for Parkinsons.'?
Don't you have a team to undertake such tasks? A team that PUK pays to do this??? Or is it the same team that is responsible for this new and user unfriendly forum????
Suggestion, sack them and get all your answers from forum members, which you already seem to be doing very readily.
Good Morning Benji
I am a little wary of posting in your direction as you were unhappy with my(too much information) style of writing so I hope this meets with a better reaction as I would rather have you with me than agin, As the heading suggests it is vital that not only the genral public are educated but also Hospital staff, and that includes from the top down, and I mean no inferance saying that the bottom is any less important than the top, indeed there were times when four years ago I was admitted to NTGH with a life threatning infection I was in agony and the staff did all they could to to help me recover,but and its a BIG but, not the Jennifer Lopez version you understand but the drugs trolley regime on the ward, the pain I went through was unbearable it was caused by a very severe water infection and I place it at the very top of the list of the FPLEF, not readily available to the public, in fact I have just made it up, it stands for, FEDS PAIN LEVEL ENDURANCE FACTOR If it was given a marks out of a hundred as a guide or graph, the marks would be 952 and the graph would have climbed upwards so rapidly it would ignite the paper it was printed on, so after that slight detour , it was the nursing staff that made my voice heard, I was in such pure refined andagonisable agony when trying to pass water it was shutting me down, paralysing me, the parky that is, oh yes the beast was enjoying my suffering, I told one of the young ladies to contact my PD team in the Jubilee wing of the same Hospital which she kindly did and within ten minutes my nurse specialist sat beside me and listened to my tale of woe she immediately began probably the most cost effective revolution ever in the NHSs history, the cost 1p the results were very substanial for all PD afflicted patients or in other words patients who were admitted with a non parkinson problem, but as a direct result of the lack of knowledge the staff by sticking strictly to the rules regarding the administering of the PD drugs made things a thousand times worse for the patient, we are of a special, no veryvery special brand of patient, we know instinctively when we need our meds, and Hospital rules do not figure in our lives. So for 1p the cost of one A4 sheet of paper upon which was written the ammended information allowing PD patients access to their drugs as and when they needed them, six weeks later I was in the Freeman Hospital Newcastle for a prostate op and there on the notice board was a much more noticeable version of the A4 draft hammered out at NTGH and I am sure it will have helped many Dctors Nursing staff and lastly but no means lastly,the patients know iknow its bad grammar but I DONT GIVE A FL/////!!!!S as I am feeling well this morning so I am feeling mischevious and will likely land myself in trouble,,"GOOD EH"
Kindest Regards to all
Thank you for all the responses so far, that's really useful. Can you think of any examples of how it would help in your day to day life? Like Chrissy Ray mentioned - not having to go into a long explanation of what Parkinson's is. Has anyone else come across situations where increased awareness would have made a difference like that?
Ummmmm, let me see, A Dilley. Maybe my earlier comment?
fedexlike, don't be wary of me or what I post, I just like to say it as it is or what I think... a bit like you really.
I have just read another comment by dsa, on another thread, on their wait to see PSN.
How about a Parkinsons Disease Big Brother
I had a lady called wendy call me from the local job centre the other afternoon.
She said '' hi i'm wendy from your local job centre, i'm just calling i understand you've just been put into the support group, but would you like too consider going back too work??"
Yes that's right i was put into the support group just two week's ago.
"on my notes you were put into it for pain or something??"
Actually i was diagnosed october 1st with Parkinsons
"oh erm oh err oh well we realise it's all fresh and all that but i have too offer this but you could be better off working and erm volunteering"
I havent started treatment yet and all i can think about is parkinsons and Me, sorry!! and if i ever get well enough for a day off parkinsons too think about a job of any kind it'll be a job that fits around me.
"ooh ermm ok i'll leave it on file as that, we are here too offer support that's the point of support group".
So the lady from the job centre didn't have the right infomation and prob doesn't really know much about parkinsons or any other condition really, shes just a wheel in a cog that doesnt have understanding.
a example of "why is it important too raise awareness of parkinsons??!!".
Some reasons from my experience (just a personal view):
- airport security might be easier to handle - everyone's a body language expert these days!
- people might stop telling me to 'just relax'; that includes a doctor, a phlebotomist and an MRI nurse - not sure what the proper title is - (seriously, if only...)
- there would be more understanding that a positive attitude, good diet, exercise and sleep, while important, can only get you so far - I'm not putting it on or malingering or just not perky enough to make it go away
- I'd be less embarrassed by it - maybe. . . "You've got what? Really? My gran plays tunes on her plate with her fork when she eats- well you've got to laugh.." ( a genuine reaction) Why? It's not funny
- more public awareness has to be of benefit to newly diagnosed people, I know I wish I'd known more before diagnosis
I wasn't diagnosed at the time or had awareness of my own state of being ill, but ,On the first time of meeting my Girlfreinds Aunt at christmas, shes a bit posh.
She said in her best voice out loud "Does he have a problem with the drink??"
my tremor was visable, and always has been, but too turn it into humor, i informed her i was the only one not drinking . humour sometimes seems the only way too overcome.
(Yawn) So no one fancies going on big brother then
Sorry for boring you leyther.
Anyone with the word angler in their name is not likely to bore me.