WHAT MOTIVATES PD RESEARCH TO FIND A CURE

JOB ADVERT.(might say)

PD RESEARCH ,CANDIDATES MUST BE PREPARED TO WORK WITHOUT PRESSURE,SHOP ORDER, DEADLINE, PRODUCTIVITY MEETINGS ,TIME LIMIT ...FLEXIBLE HOURS,OPEN ENDED CONTRACT ,,UNLIMITED FUNDING

SALARY£140K PLUS BENEFITS ..........NOT COMMISION OR PERFORMANCE BASED

WHO WOULD WANT TO GIVE A JOB LIKE THIS UP

GOVERNMENT/ NHS NEED TO START PLAYIN HARD BALL, CHANGE THEIR VIEWPOINT, MAKE RESEARCH ACCOUNTABLE ,, A CURE COULD REDUCE THE NHS

DRUG BILL CONSIDERABLY

WHILE PUBLIC FUNDING HAS CONTINUED TO SUPPORT PD RESEARCH

" ARE they TAKIN THE PISS"

..25 YEARS ON , CELLS,, CELLS THIS N THAT ,NEW DRUGS IN TRIALS TRIALS TRIALS.STILL ,,,,,,,WE dont have a scooby ,,,,,,,,,,,,,,,unless yur a white rat

FRANKLY I FIND IT DIFFICULT TO BELIEVE

9 Replies

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  • My husband is part of a trial,looking at how DBS helps and hinders.A lot of trials on humans are running ,you just have to ask your neurologist or Parkinsons nurse.Also check out the Parkinsons site for the UK.

    When I first went to see my husbands neurologist with him,I asked allsorts of questions about trials,a lot happen in the south but the DBS was for the whole country.

    They are trying to find a cure but it is baby steps as with most things.I would love them to find a cure as I have never known my husband without PD.He was diagnosed in 1998 and I met him in 2001.So yes I would love to see a cure in our lifetime.

    We just have to hope and pray that they do.Yes a lot of tests are done on rats to see of they work,would you like to have something that wasn't tested first?I wouldn't let my husband.

  • DEBBIE sorry if i come across a sminky impatient, my point which i think you have missed 25 years ago they reckoned on finding a cure in 10 years, cell replacement stem etc cells this n that drugs this n that, thers no urgency still there is nothing that works too well without bad side fx, and the dbs does not fix all ,your problems ,i have been denied access to pd drug trials because i have a dbs, and baby steps yeh sure tread carefully but with all the knowledge gained takin things a baby step at a time ,. all this caution has meant a very informative picture has been established and can now say?? sod all zero has been established a far as i am aware so a

    cure in 1 year 3 years my point is they still cannot even produce a workable remedy never mind a cure and when yu dont actually suffer the illness

    you cannot even in your wildest nightmares appreciate the fear or a runaway illness for which there is nuthing that saves you, again , i apologise for my frankness

    and i hope your kind words of hope are realised,i have had this 30 years,still i wait

  • Sorry Professor,I know I don;t have PD but I do see and feel what it does to my husband on a daily basis.He has advanced PD and we know since having the DBS in 2004 he cannot participate in other trials.

    The point I think I was trying to make was that when an advance like DBS comes along and they try it out on people like my husband and yourself they can see the good and bad of it.Advances with DBS are being made all the time,yes I know this isn't a cure but before the DBS my husband was dyskinesic 24/7.

    To think 20/30 years ago this wasn't available,this is what I mean by baby steps but steps in the right direction.I am very passionate about a cure being found and I keep up on the latest findings and results.I hope there are others out there with PD who will join trials and see if the next thing will work,it's a slow process but it's going in the right direction,just not as fast as we all would like it too.

    The scientists are always optomistic they have to be to keep going to look for cures for PD and all the other illnesses out there.

  • Hope and pray you may but your up against a god that has no intention of listening to the passivity of prayer.Hope springs eternal and hang on to that as there is some measure of positivity ,keep looking and never close that door.

    Two weeks ago the European Medicines Agency held a meeting on transparency and clinical trials a panel member blogged

    ' During the discussion, a lawyer working for a drug company stood up and said, quite simply: we pay for this data to be collected, we should be able to control how it is used. There was no sharp intake of breath at this comment, in a room full of 200 regulators, researchers, industry representatives, and doctors.'

    A detached comment,but here we have evidence based data in the hands of marketeers,its drugs for profit not health and fails deliberatley to focus on the needs of patients beyond product marketability. What would you do if at your next neuro apointment you doctor nurse or researcher said“we think we should be allowed to withhold vital evidence about whether that pill works or not," from you, the person swallowing it.

    Thanks see you next time

    The problem persists, because people – some of them in positions of great responsibility abuse that power.

    Then theres us PWP and other sick folk, we must take some responsibility ourselves, so are you a muppet or a muskateer,"one for all, all for one".For me well Im both depends on the day Im having.

  • WHAT YOU FEAR BUT WOULD LOVE MAYBE ITS LOST

    HELPED BY FRIEND YOU KNOW ON THE WEST COAST

    FORUM, NOW NO REWARD,BUT, A DRIPPIN ROAST

    IF IT HASNT IT WILL A LETTER IN THE POST

    THE OFFER TAKE IT A CELEBRATION TOAST

    MAYBE YOUR UNSURE BUT THEY FEAR YOU THE MOST

    CHALLANGE THE PARASITES ON THE BUMS THEY HOST

    BAD TIMES WORTHLESS MINDS SPENT EFFORTS ARE LOST

    EXPEDITE THE CURE,NEW START MOVE SCOTLAND OF COURSE

    THE GREATEST BECOME THEN PARKY PARKY Z A GHOST,

  • Watch the cat "play" with the mouse - let it go - pounce and weaken, over and over again. Hope replaces fear replaces hope. Good days - bad days. Much like Parkie, tease the patient. God's a pussy balderdash!

    Baby steps - who says, who dictates? Steps dictated by otherwise healthy babies, victim to a pharmaceutical disaster mid-last century!

    Carer won't let cared for take risks? More dictation.

  • I am a carer Grey and I guess I pushed my husband into having the DBS but ultimately it was his choice.I am a carer who wanted my husband to take the risk ,if you don't take a risk how will you ever know if it will work or not.

    Yes I agree there are some who don't want the person they are caring for to take the risk,but I see it from their point of view as well,What if it doesn't work and makes them worse,who will blame themselves more?the carer or the person they are caring for?

    There are arguments on both sides for risk taking and not risk taking,at the end of the day it is up to the person with PD and their carer/s .

    I feel very passionately about this as sometimes the person with PD forgets that the person caring for them has feelings as well and it is give and take on both sides.

  • Dear Professor,

    Try the site fightingparkinsonsdrugfree.com It is free, people are getting relief; but it takes a year of hard work doing Qigong exercises. So far; three people have been totally cured.

    Good luck,

    MagicMax

  • Would anyone agree with me that the cure would be closer if all the organizations and research clinics around the WORLD, combine their findings. Just Google PD Research to see all the labs! It is down right stupid to have this wonderful God given talent spread out. There is the puzzle, put the 'stupid thing' together - WE WANT A CURE, YESTERDAY!!!

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