so it is official now, 14% of us are nutters according to the findings of the 3000 people interviewed. but how can this be? i have met a lot of people with parkinsons and surely they are among the soundest folk on this planet. but what percentage of non parkinsons people would be labelled obsessive/compulsive if they took the same survey? i think the figures for binge eating, shopping, gambling and sex addiction would be very similar. except with parkinsons you have to conform to the worlds exacting model of perfection even more closely because when you are shaking and moving slowly let's face it most people are going to treat you as a nutter anyway - does he still drive? - you've been overdoing it again have'nt you? - how are you ,y know whithin yourself? etc. etc. so we don't stand much of a chance and now we stand even less being labelled 14% nutter. you are not even allowed a hobby with parkinsons without being accused of pundling (excessive hobbyism). so we need to be "fixed" but if you can't move and are shaking i would call it natural to try to lift ourselves by doing something we enjoy. 74 of the 3000 people were not on agonists but also developed obsessions/compulsions but the people on agonists are likely to be that much farther down the non-movement line so would be requiring a further "self lift". after all cancer sufferers would maybe seek to enjoy a cruise or special holiday etc. but they are not condemmed as obsessive/compulsive .in truth anyone ill will look to enjoy life more to lift themselves.does this mean ill people are obsessive or have destructive tendances to put pleasure before illness sometimes? ("they would not have done that before they got ill") so you see this is all leading to more treatments- more therapies, more of our personalities being erroaded from us. earlier therapies? - well the drugs that we need are in short supply, maybe pduk would be better adressing this problem -the drugs companies price cartel instead of condemning us by pushing the mental health thing -but it is not in their interests to -they all work hand in hand and pass the funding round. so all you sufferers out their ,wake up and see whats happening. LOOK I REALISE THIS POINT OF VIEW IS CONTENTIOUS BUT I AM CONCERNED AS A YOUNG SUFFERER AT THE WAY I/WE WILL BE PERCIEVED BY THE PUBLIC.
Hi, Well you could say I was one of those Nutters affected by the dopamine agonists?!!!! Parkinson's Uk where slagged off for not bringing problems like this more into the pulic eye to raise public awareness and now they have they are actively doing something about it they are being judged again. This is a serious problem which has ruined and still is ruining peoples lives. It needs to be addressed. Well done Parkinson's UK.
The shortage of Sinemet is also a serious issue that is causing me great concern. I have tried madapar and it made me very ill so for me there is no alternative!!!! I cannot go back to taking dopamine agonists, it is a definite NO NO! I'm sure there are other pwp's in the same boat. WHAT A NIGHTMARE!!!
I AM NOT HAPPY ABOUT PDUK BEING INVOLVED SO CLOSELY WITH THE DRUGS COMPANIES . I ONCE WENT TO A PARKINSONS & MENTAL HEALTH CONFERENCE . SOME DRUG COMPANIES WERE PROMOTING THERE . IT SEEMS TO ME THE CART IS DRIVING THE HORSE . I THINK WE WOULD HAVE MORE "CLOUT" IF PDUK WERE COMPLETELY INDEPENANT FROM THE PHARMACEUTICUL INDUSTRY . THIS IS ONLY MY VIEW - I COULD BE WRONG BUT IT IS HOW I SEE THINGS .
In what way is P UK involved with the drug companies? I find this statement hard to believe as it seems to me to imply a hand in glove relationship. Are we talking about funding for research?
Whether we like it or not these drug companies are in private hands, and unless we can persuade every country in the world to simultaneously nationalise them without compensation we're stuck with that. Leon Trotsky had lots of good ideas along this line, but his deep thoughts earnt him an ice-pick ending.
Company law obliges the boards of directors to advise shareholders of what decisions would be in their own best FINANCIAL interests, and NOT what would be in the best interests of customers/patients. So we poor consumers, aware of these realities, must negotiate as best we can in that environment.
No point in muttering about how unfair it all is, that's life. Organisations like Parkinson's UK have to work in the real world. If, for example, the most cost-effective way of pulling all the world's PD experts together for a conference involves a bit of sucking up to the pharmaceuticals better to go along with it than refuse to get involved in the research and let the whole symposium (and industry) leave us for other shores.
As individuals it’s almost impossible to raise public awareness on any given subject.
We can try, but at the end of the day our voice falls on deaf ears. We may get a bit of lime light if we chain ourselves to the Houses of Parliament. It would
however, be in the paper one day and gone the next.
The only road is to be united together and fight together and that’s what Parkinson's UK have done, they are a large charity organisation that are fighting right there behind each individual voice.; for everyone that has no voice. Fighting in a mad world that has no time or wish to listen.
Parkinson's UK have, as it’s been said been criticised in the past for not doing enough. Now they are involved and have been bringing to the attention of the public problems surrounding a variety of subjects that relate to the world of PD. We don’t need to knock them but rather help them to do so.
I personally am very grateful to everything that Parkinson's UK have done for not only me but all those that have PD. IMHO, Well done PUK and please keep on fighting for us all.
i would of been classed as one of these nutters as u put it ,when i was on mirpexion it got me bad ,then i had a breakdown on top of that as well,i posted on forums for a long time before mirpexion was in me body and when i had it then i was in a bad way controlled by it so allme life i was crin out for before on forums for advice and help with daily life was takin as if i was makin it up ,cus when mirpexion came tome i went off the rails with brakdown to and then i was blamed for me past to be a lie to cus ihad made a lie when i was on mira,i understand why this happeined but i was never givern the chance at all to expalin and still never can.i begged my neuro for ages to take me off mira but he said it doin me pd good the side effects will subside ,well that was bull cus i just got worse and worse untill i broke down mentally i then needed alot of help by drs to ge me back to me self iam now not with that neuro i asked if i could be takin away from him cus he would not listern tome ,after all i new wot was happin tome body he can not guess seein me in app for 10mins
Someone has posted something similar about drug shortages so i think this is relevant