Duodopa - NHS says no

[fedexlike]

 

       I dont want to bore you,with facts, but I think its relevant, the new carriers will be equipped with the F35B, a STOVL  Aircraft  the B version is the least efficent as it has to carry the extra weight of  the huge fan needed for the VL  bit of its capability, it is superior to the Harrier, but at  £100 million a pop it wants to be, its projected service life is  50yrs  ??? starting 2018, the cost of one F35B  would be a huge boost to PD research, and may even pay for Ddopa for some lucky individuals, the world has not changed in the last 100 thousand years, like kids with a bigger and better toy,or Army Navy Airforce the race to kill has always been faster than the race to save, when will humans be mature enough to live in peace,we do not deserve this once pristine world.

                                  A very naieve  Fed

           

[turnip]

i think it would be worthwhile turning our attention to the splendid group of philanthropists known as Abbott Laboritories of North Chicago, Illinois, once the territory of another philanthropist called Alfonse Gabriel Capone.

Abbott are well known for paying at least $1.3 billion for illegally marketing its Depakote epilepsy drug to the U.S. government and 24 states.

Abbotts Laboratories has been reported to use tax avoidance strategies. In 2011, two Irish subsidiaries of Abbott Laboratories made a profit of € 1.8 billion and € 1.1 billion respectively, but paid no tax. This is possible due to the Double Irish arrangement. While the directors of the company are all US-based, the first one is a direct subsidiary of an Abbott company in Switzerland which has no staff and has its registered office in Bermuda. It is considered as a "non-resident Irish entity incorporated in Bermuda" and therefore is exempted of taxes in both US and Irish jurisdiction

And these bastards claim duodopa is an orphan drug ie a drug for rare conditions and therefore have extended patent rights and tax exemptions.

By the way they didn't invent duodopa but bought it off another company.

thats why the NHS was being screwed and why we cant afford duodopa.

 

 

[turnip]

dear Leo

even at the lower figure that is ukp 70 per gel. I find it very hard to believe that the manufacturing costs are anywhere near that figure. I believe the equivalent cost for madopar, for example is about ukp 1.

Duodopa is a great product but should the NHS let itself be screwed by any criminal company (and that is a fact not an opinion) that has managed to gain a monopoly supply?

[fedexlike]

 

 Hello Turnip

                        These creatures, no thats not fair to creatures, these living human size cancers are a example of how evil and sick bloated and greed motivated some individuals can become,in the same way that  evolution has given the world so many wonderful species , based on the survival of the fittest things eventually  stabilised and all was well, unless you were one of the weaker less well equipped of course then you got ate?  not good, and the sort of groups mentioned in your post are predators and know all the tricks, depriving  communities of monetary sustinence by avoiding paying tax, how much  money does these faceless blackhearted cheating dishonest greedy pigs need,  100 mil,  500ml, 10.000 mil when will enough be enough they are a bi product of evolution and a very powerful one at that, their evil tendrils reach around the world and effect all of us, we all pay unknowingly to these , well they are a disease, thats the best description I can come up with , yes a disease infecting the human race,faceless monsters consuming assets and stockpiling wealth beyond comprehension, as I have said many times, the world mst die in order to update, and this time hopefully evolution will not come up with Homo sapiens, to wreck it all again

                                     Good to hear from you Turnip and thankyou for informing us the world is going  down  the tubes mate  Best wishes to you ,  Fed                

[turnip]

Hi Fed

I love your rants. when it comes to ranting, none can compete! you are the emperor of rants.

you are a national treasure

t

[fedexlike]

me my bro and me+RAYBANS

    Well thankyou kind sir,I have always valued highly your wisdom and opinions so to describe my efforts in such a way makes a huge contribution to my self esteem, which has been flagging lately I do tend to go off on one at times though and diplomacy does not rate high in my priorities, sometimes my Brother will wind me up about a sensitive subject, and off we go!       Tongs and Hammer, sounds like a couple of solicitors.

                                Thanks again my friend    Fed

[maria030660]

Hi Fed,

 

Ever thought of going into politics? You have my vote if i had it. Sure politics dont agree paying for duodopa, after all its not affecting them..until PD is in their own street and yard. And then my Viking instinct start to work and going to battle...and the Vikings won remember..lol

 

 

 

[fedexlike]

Hallo Maria

             Goedemorgen  , dank je wel Mevrouw Maria, oh this is a difficult language  yet interesting, I hope my pronunciation is correct in my greeting if I had to go into battle the sight of you in traditional viking battle dress complete with the hildemece would make me go weak at the knees never mind the enemy, the Vikings were very active in Northumberland, when they made landfall at Lindisfarne they were very very naughty boys all that raping and pillaging, I know that after a long period of pillaging I certainly could not be a,,.d to start a massive amount of raping I would be absolutely s,,,,,g out and would not be able to treat the Angles women with respect which would be unfogiveable, they arrived in 793,and quickly made themselves at home, having  fun  with the locals and  indulging in their favourite hobbies,, yes youve guessed it,,raping and pillaging, however after one huge effort to subdue the brave Englanders, at Stamford Bridge they got their botties well and truly kicked, and despite the superherculanian effort of one very large giant unpleasant Viking, to prevent the Englander infantry crossing  The Bridge at Stamford, he went berserk, hence the word Berserk, he was eventually thoroughly DISABLED and, given a nasty surprise when a very inventive England supporter took a small boat and drifted under the bridge and shoved a very sharp very long spear upward, causing all sorts of  problems for the berserk bloke on the bridge, he was overheard screaming shouting and swearing at the Englanders over 20mls away in york,I suppose it could be the earliest Viking Vasectomy, any way as usual I have  completely drifted off track, AGAIN, In answer to your query about my aspirations if any into politics I did help out with my chosen political group a few years back but they would ay one thing and then a week later would do exactly the opposite, and a large portion or portions   of lies backstabbing dishonesty and fraud  certainly opened my eyes and totally disalutionianalised,(ive just made that word up) me in being proactive and when faced with a bunch of toffee nosed middle upper class a.......s who are only in it for themselves I never went back, what happened to THE MAN OF THE PEOPLE FOR THE PEOPLE WHERE IS HE AND WILL HE EVER RETURN,BRING BACK WILLIAM WALLACE, not that pillock who played him in Braveheart, but a real strongwilled thought full kind compassionate  who would bring back fairness and equality, a attractive photogenicslightlysmallerclinteastwoody person  a DIRTY HARRY type who would do as he says, and say what he does andwhat sayshe he willalso, oh well you know what I mean,, hey  wait a minute, I am that person my chest is swelling  "steady Maria" I can be that man, SUPERFED, a caped crusader driving out lies and corruption, SUPERFED, yes yes I can do it.

                              NO I CANT sorry sorry that was very silly  Bye for now

                                              SUPERFED, sounds good that I may use it more  SUPERFED yes Ilike itWhos  this guy

[maria030660]

My dear friend,

 

It sounds like you have been a descendant from the Vikings too you know that much about it. They were a cruel bunch but so was every body. I know about the poor monks in Lindisfarne.The Viking lady you imagining is called a 'shield maiden' in Viking terms. She was able to combat just as viscious as the Viking men.

All politicians in the end are liars. You should come here to ireland were they lied to people about the financial status of the country while everybody knew we had to get a loan from the EU. And the normal Joe soap paid for it dearly. Old people and families with severally handicapped children lost their medical card because they were earning 1 euro too much. The public was so disgusted they ut the whole thing on hold and reviewing the law which is from the sixties. They are (as they are saying and promising) changing it to the need someone has rather then 1 penny too much. Maybe you and me should form a new party like 'Viking Parkies reunite!!!'.

My dad was a communist and he learned us to fight for basic rights. He is still alive and if i tell him your storry he would explode and say 'its all those damn capitalists!!!'.

Superfed is a good name, after all youre in a formula one scootmobile.

 

I hope you dont mind me messing a bit with you. I think you are a brave man coming so far like this after being a hard working man all your life.

 

 

 

[fedexlike]

 

                Hello Maria

                                 I find our exchage of information and life comparision very enjoyable, making new friends especially those who have had or are going through difficulties is alway fun and rewarding,we obviously have mutual interests and talking about things good or bad, always makes you feel better,I have found a first class indiviual with whom I can chat with ,complain with go through pain with, it seems like I have known you for ages,,  by the way do you like Monty Python and similar humour,,,oh and I dont mind you messing with me as you mention it if it makes you happy, feel free.

                                                  Best wishes

                                                          Fed

[maria030660]

Hi Fed

 

I love Monthy Python especially 'life of brian'.I always say to my husband and everyone that is close to me'shoot me when i lose my sense of humor because when that is lost you might as well be dead.

The horrible thing or the most admirable, it depends how you look upon it, is that Dutch people are incredibly direct. I can remember sitting at the doctors for the test results and she was shuffling around with papers and the usual 'uh .... uh'. I told her (only a young thing), look i am a very educated lady and very dutch so no beating around the bush.. it broke the ice more or less and got its straight up.

generally i am a happy person at heart, despite the moaning we do at doctors, health care systems, long waiting times etc we still have it a lot better then the people i saw in the countries i worked with. People and kids with ripped off legs and arms, no food, no cloths and illeterate, kids freezing to death you know it. Although not perfect we do get help here. Sounds corny but it is  true.

And God knows how long i have to shuffle around like this soo might as well make the best of it and make sure from time to time, doctors, health officials etc dont 'eat the cheese from my sandwich'...lol

 

I have sent you a link to the video of Vikings, you should enjoy it.

Did you work on your tan while at the beach?

 

 

[fedexlike]

 

             Hello Maria

                                I have been a fan of Python since the first televised show, and have all their movies, it doesnt matter how many times I watch  them I always find their work hilarious , also Black Adder,Spike Milligan, the Fast Show, but although I enjoy  Father Ted, I can find no humour in Mrs Browns Boys, when in the sixth form at High School myself and two of my friends decided to try writing scripts for our own sketch show, we made one show a month and used party invites to try them out, I thought they were funny, especially the Pete and Dud skit, I could mimic both guys cockney accents perfectly  and we made our friends laugh, which is all we wanted, but we left school and drifted so no more making friends laugh, humour can carry you through lifes trials and its essential to have it updated and rebooted at regular intervals                                      And thankyou for the link to the Vikings I really enjoyed it and all the other battle scenes I do enjoy films and documentaries  about them it must have been a scary place Northumbria when those guys came calling, I see now where you get your directness, its good I like directness, no messing tell it as it is thats the best policy get down to the crux of the problem deal with it and put it behind you. You have seen things in your life that a young lady should not have to see, but you are strong, that is clear in your posts, we both have a brain disease which unless a cure is found to arrest the desruction will hurt a bit, I have donated my brain to medical science on condition I am finished with it first, I think its vital to try and stay strong and be single minded in my dealings with BLACKHEART, I cannot have DBS I have the wrong type of parky and I find more and more of my time is being spent experimenting trying new ways of completing tasks which are becoming harder to carry out putting in place plans for my future I refuse to accept this entity will defeat me, every day now we but heads, its hurting but I  am keeping my head up Maria and intend to continue that way as long as I draw breath.

                                      Sleep well my friend               Fed    ps could not improve tan as it rained

[fedexlike]

 

           Hello Maria,

                             When I was watching the Vikings yesterday, there was a fearsome but very fetching shield maiden  do you have a doppleganger, she was despatching the Angles with ease, fearsome.

                                                 Hope this Day brings you peace          Fed

          

[bcingu]

She took my hand and we walked together along the hospital corridor. I am unable to find any words that describe my emotions. We looked at each other, our eyes filled with tears and she said "I have a dad I never knew I had" The previous day I was taking the usual cocktail of around 50 tablets in a 24 hr period with very little effect and relying almost completely on my wheelchair and mobility scooter. I don't have time to list the physical and emotional negatives attached to this tormenting illness, suffice to say Duodopa has given me life and turned the clock back 10 to 12 years. If those responsible for depriving people of this treatment had spent a week caring for me almost 2 years ago things may well be different.......

[fedexlike]

 

           Hello  bcingu

                             At last someone to swap notes with,I was told I had parky in 99 when I reached 2012, I had used every option, and frankly there were days when I was a living corpse,in fact I used to wish I was a corpse then I was offered Ddopa I turned it down at first, but boy am I pleased I finally  accepted it I had nothing to  lose , the op was in March2013, and it was life changing, I will have to go now as I have a appointment but will  be back                                     Kind Regards             Fed

[fedexlike]

              Hello fellow Ddpa operator  bcingu, when  did you have the system installed and how are you managing it, I was reluctand it first and almost refused it but as I said I was spending my days like a zombie all the drugs I had been taking had almost no effect and after a long chat with one of my excellent PD   team I went ahead with the op.  About three weeks before the Ddopa  was fitted I was rushed to NTGH  IN PURE  AGONY, this was caused by my Gall bladder, which was renoned, that op went fine but three weks later  I went in for preliminary testing of the   Ddopa, you dont forget events like that in a hurry do you my friend first the camera then the tube, not nice, however it worked well so one week later I was  in the pre op room  , the  date seared into my memory, for some reason the  heating in preop was not working and if you remember March 2013 was the coldest  on  record so I lay there for 1hr 22mins, there had been a problem .a patient who went before me had slipped into dying mode so the crash team arrived at light speed +++ , they saved the poor chap which was good but I was a solid block of ice,, not good,but more to the point if I am exposed to exremes of cold or heat, it starts very severe Dyskie,so I was unable to stop the worst attack of one of parkys more viscous  tools in its armoury,add in a massive dose of fear and cowardice and  Fed is ready to run, I was just going to  do a Usain Bolt when the wellcome site of Val, a nurse and a person who is perfect in  the role she was a Angel and calmed me down holding my hand and gently distracting me from what lay ahead, then suddenly I was in theatre,I was trying desperately to control the dyskie , my mentor was holding my hand and trying her best, and the surgeon who had the bedside manner of CHEMICAL ALI remember him one of mad Sads buddies, he was shuting at me to lie perfectly  still Mr Fed, now as you know whenever you get agitated Dyskie chips in,and boy was I agitated, they first removed the tube used in the tests, it hurt then the into my mouth went the guide for the camera and  the tubes for the Ddpa, it hurt, but what really hurt was when the Surgeon was  pushing down hard on my abdmeunum, nope admenumb, oh b...er it belly and he searched for my small intestine he was pressing on the  scar tissue of my  three weeks old gall bladder op, so here you have it a patient bouncing all over a  unfriendly  surgeon my fear and trepidation,  and two surgeons trying to push thrir way inside me via old scar tissue, through all  this I hung on and then it was over, andI was back in my room, the third part of  my story I will disclose shortly.

                                                        Fed

[turnip]

dear bcingu

duodopa is a great product and I may well be using ot myself. but who is the bad guy? the nhs with limited funds or the pharmasods charging 70 pounds for a gel made of levodopa,, carbidopa monohydrate, carmellose sodium and water? basically its a sinemet tablet whizzed up with water and an ingredient used in ice cream and personal lubricants. .

 

 

[fedexlike]

             Sorry about that bcingu, I never see anyone for months then they all decide to hire a A380 fly into Newcastle and arrive in one lump we dont have a huge house and trying to cater for 400 peeps who land unanounced its difficult, I happened to mention to my cousin that I feel like I  am dying until the Ddopa kicks in the morning so they will be trying to keep on side as I have a vast collection of single malts some very very rare and worth a  bit, one I purchased in 1981  for £35. is now worth  £289.57p and there are approx 400 bottles in the attic I started trying to list them, make a inventory  Ihave so much of many and varied collections of highly detailed models that either I have bought or made  thousandsof them  bc, oh well Im off topic again sorry folks, getting back to Ddopa, after minor technical  glitches we were quickly up to speed and It has changed my life  ,as you said ,my walking speech reaction times all imroved  massively I still have bad shut downs but I expected that also if I use the boost to much it  makes me Dyskie, I would like to  hear if  you have similar problems , perhaps if anything good or bad comes to light we could inform each other.

                                    it could be usefull.  Kindest Regards               Fed

[fedexlike]

Hello Turnip

                              These people know that there are many fellow parky victims world wide who are desperately in need of  Ddpa and as you know these massive multi Trillion Dollar conglomerates are overflowing with compassion,I hesitate to use the word hate as there is so much hate in the world now, so I will use the word detest, so I dont know who I H--detest the  most those invisible GODS and GODESSES in the city or our mutual vile wicked barsteward BLACKHEART,  they deliberately up the price or with hold the product prevent it from being marketed thereby pushing up the value of  Ddopa further,and who am I to say  I am more deserving of this device than the  next man, I was very lucky I have a really outstanding team  loking after me and they pushed and pulled and smacked around the lug until  funding was made available for  me to have Ddopa, I now feel very privaleged as one of only a few patients in my country to have this system and only three that I know of in Northumberland.   I was thinking the other day, beloved doesnt like me  saying those words as it usually means I want something and she does not want me to have it this brings out the devil in me yes thats the guy, as I was saying I was thinking the other day,about values, or things we value both as consumers , well the top of the tree is the house, not to be mistaken for "A" tree house, then the car, people  will allow their families to starve so they can aquire ON HP the latest and greatest and the bestest I know thats not a word but hey`!  the sun will still rise in the morning, then we come to the items we should but in so many cases dont,value higher than any material possesion  yes folks our family, our children our wives parents brothers sisters, all priceless beyond compare, the there is the community we live in, when I moved into this house which is delivering the power to this laptop directly to your eyes enabling us to converse about any subject worldwide in seconds,but back in 1980 the avalanche of mobile phones the size of a breezeblock ,computers the size of your front room  we cannot exist without these gadgets now, and they are becoming so sophisticated even my old decrepit brain is capable of adapting to this marvelous technological race,Though we bought a WiFi  printer the other day and I dont know how to fit it into my sytem of computers, but I will crack it,and so we come a full circle ,no one in their right mind expects Ddopa for free, and I fully expect the CON DEMS will force the newly privatised to stop funding Ddpa,and I will have to pay for it ourselves that would give me 3yrs approx, then its back to the land of the living dead for old fed Id rather be dead than filled with dread and not be able to treadwherever with no street cred cant eat bred,, sorry sorry that was very silly and the point I am trying to get across to you all but I keep interrupting myself is this we need to build a strong community so this attempt to change human outlook expectations abolish hate make communities understand and help one another, and thus stronger we need a few bob, I used the calculator on this clever s,,.e laptop to work out how much, and arrived at the figure of  £22.Billion£823Million£990Thousand £890Pounds, P 52Pence, and it can be done if all the tax dodgers paid it all back if no one had a salary, lager than £ 400.000 a year, If you cant manage on that amount you are not wellcome in the stronger community,,( refer to Mr Lennon for my ideal world) imagine if it could be done, how we could cure parky with a pill intead of  building  a muti billion fleet of Nuke Subs or 15 billion on a football match instead giving decent living conditions to its people, you can even  think  the  unthinkable      un imagineimaginable    that huge drug companies develop  a concience, now that would come up with the goods  wouldnt it Turnip

                             Always your friend               Fed

++

[bcingu]

Greetings Mr Fed

Sorry for delayed reply, been out and about. Please don't expect posts as long as yours, I'm not that clever with the keyboard or the English language! Had pump October 2012 at which point I thought my life was over. Never before had I stared death in the face. On more than one occasion it was as though I'd been to the edge of the cliff and looked over into the darkness. Ddopa is not perfect by any means and relies heavily on being in a good frame of mind and a good night sleep, for me anyway. I don't doubt that diet also plays a significant role, however I'm too much of a weak willed mouse to change that. I don't dislike sprouts, nuts and cranberry juice but neither do I dislike Côte d'Or, sherry trifle, coconut & cherry cake or Balvenie Single Barrel :)  The continuous rate varies at the moment from around 3.9 - 4.1 first thing in the morning ( 6 am )  to 4.2 - 4.4 in the afternoon when I feel tired. Morning dose 3 and Extra dose 1.8 of which I might use twice a day. My incredible wife and soul mate is the expert physician and we recon I need less in the hot weather when the blood is thinner otherwise I'm all over the place! This is where I am today but as you will be all too aware, just when you think you've got the measure of the monster it changes direction so I'm constantly monitoring. It all gets a bit too intense and boring at times but all this in order for some kind of quality of life which leads me on to turnips comment and you'll have to wait cos I've just gone off ........ !