My wife was diagnosed with Parkinson's 18 years ago - although Oral medicine has managed her condition during this period it has now begun to be less effective - this week 15/09/16 she went into hospital for a couple of days to be assessed as to wether she would be suitable to go on DuoDopa - after tests the neurology team decided that she would be and she is scheduled to have the procedure carried out this coming December - we would be interested to hear from others that may have gone onto the DuoDopa pump - she is unable to have DBS as her short term memory is not that good
i have just been turned down for DBS and the doctor has recommended DuaDopa but I can't
find much about this topic and how the procedure is done..
I shall be very grateful if you and your wife will keep us updated with how she gets on.
With very best wishes to you both
Hi Cassie thanks for your response my wife is at the very early stages of getting DuoDopa I will let you know how she gets on
Hi I've just been outfitted with the duodopa system, I'm into my second month. I'd be happy to reply to any questions you may have.
Hello Taco Casie and GPCanuk
After much pushing and shoving by my PD team (excellent) i had the op and boy what a difference, I could walk upright and talk at the same time write no stumbling and falling no shutdowns we could plan trips i was great, and though as you will know Dd is not a cure , merely a stop gap until something better comes along ,I was told about 5 to 7 yrs and I am at 5 yrs and have bad shutdowns if im not careful and look out for the signs of slowing down, a quick boost and that usually fixes it but it can be managed ,also the assembling flushing of the system at first a bit of a pain is easy after you get use to it
, how are you coping with yours Gerry
Update - I went in hospital for my feed tube to be fitted last Wednesday This needed to be fitted using RIG-J ( by the use of X-Ray not Camera) as I have a small Hiatus Hernia and the positioning of my feed tube needed to bypass this so it was decided to carry out the procedure this way - 48 hrs later I have some discomfort but this is gradually lessening - the next available date for a Duo Dopa nurse to be available is the end of February so that is when I am returning to hospital to have the pump fitted and set up.
Rest assured the pain and discomfort will soon fade as the body adjusts to what is after all a foreign body so initially its a bit sore and it may take a while to attain the correct dose for you stick with it friends its worth it
Hello, I've been offered duo-dopa and I am very impressed with the surgeon I met at The National, Queen Square.
I was impressed that he wanted to try to make me feel better by swapping my medication around and then if that didn't work, then he would operate.
I'm now waiting to hear when a bed is available and I can go in.
I'll keep in touch and let you know if there is anything interest to tell you about..
all the best.
Hello Casie Im delighted you are having Ddopa it made a very big difference to my life and still works away keeping me in the land of the lucid it may take a while to hit the optimm doseage but you will quickly adapt I asked about DBS and was told 2well FED theres just a teeny weeny problem there, in order to do D B S there has to be a brain, cheeky person, he was joking of course ehh was not hee.. , GOOD LUCK
FED Senior member od the Ddc (Duodopa) club
Have a look at parliament discussions during jan this year. Along the lines of 28,000 per patient per year. duo dopa is it cost effective ?.....oh my god what price over quality of life!!!! all receiving treatment now will continue to be prescribed the medication but a review is underway to see if new patients can have the same treatment, NICE guidelines have changed recently on prescribing levodopa to newly diagnosed, not anything to with dopamine agonists being much more expensive than Levodopa !!!!! as a early onset pd girlie I am angry as hell for my future and the futures of all the friends I have made on this site, even the ones I have p***** off . I am mad as hell, its about time this parky illness was taken more seriously lets have some pd folks on tv during an off period, advanced stages sick of just seeing pd folks on awareness weeks riding bikes across the country and running marathons this wont grab the attention of the nation!! let the world see the reality , people still think pd is just about shaking and losing your marbles. PHEW!! sorry needed a rant x
I agree wholeheartedly with your comments...Duodopa makes life bearable for many patients and should be offered whenever necessary.
However, I believe the Nice guidelines about moving towards Levadopa and away from dopamine agonists is good.
So many lives have been ruined by the OCDs that are a side effect for 1 in 4 patients on a therapeutic dose of these drugs.
If I was in charge they would be banned altogether.
The drug companies hid their knowledge of this devastation for years because of greed.
Research is held up by financial restraints so that these companies can make billions of pounds profit.
Money plays a huge role in what treatment is available yet we found £850 billion to bail out the bankers at the drop of a hat!
For me I take ropinerole and have done for 8 years and hope to continue to do so for a few more years. Yes, I agree that the drug has devastating effects on some peoples lives and that is terrible but spare a thought for those of us who want to continue using this drug. I live on my own and have to fight to stay on these meds I am taking my bank statements to my next appt to prove I am not shopping like a celebrity on my meagre ill health work pension, probably need a character reference from my neighbours to prove I have not opened a brothel due to sexual urges, yes I have put on weight its all that coconut oil, hemp seed oil rather than compulsive eating I keep a food diary now again so I can have this drug. It is so important we all get the best possible care and have a say in the medicines we take. We deserve to have the side effects explained to us and friends partners also informed so they can raise a red flag , but lets protect our rights to make an informed choice as an individual. I was dx at 46 I really need to avoid levopoda for a while longer. I really hate the L drug as everytime I say it I think of Barry Mannilow singing at the copa cabanna , co carelopa or whatever its called.
Love a debate don't get me started on branded v generic drugs.
You have a great outlook, and whilst I disagree with banning Ropinerole you and I are on the same side. xx
I do understand what you are saying, TeeHee, and for 10 years we felt like you...we were brainwashed into thinking Levadopa was a poor substitute and my husband took ever-increasing doses of Ropinirole/Requip for 10 years.
When we finally realised that he had a secret life, when our savings were gone, when our marriage was in ruins, when the secrets and lies were out in the open....when the month of withdrawal was over...he gradually became used to his levadopa regime.
Now we wonder what all the fear was about. The OCDs are over, his mobility is good, life now, 16 years along the Parkinsons journey, is better than DAs offered.
Sinemet is cheap, Ropinirole is expensive. Neuros get lovely " incentives" to prescribe DAs.
You may be one I if the lucky 3 in 4. I hope so.
Thank you g.g you have reduced my fear of the drug L. I am so sorry for what happened to you both. Just wish we lived in a world where we could trust medical staff but then we have this forum to discuss important issues as a back up. I am very grateful to the people who take the time and trouble to air their viewpoints.
Take Care xx
If you feel well on the DAs and you are aware of the possible side effects then all is well.
If the time comes when you need Levadopa you know now that there is nothing to fear.
Let us all hope that research brings something new and better...my money is on gene therapy!
Knowledge is the key...but sometimes we have to fight to get it.
Wow Tee Hee remind me im on your wing when WW3 kicks off (not long now)
Just been slagged off on another thread by some misinformed folk, blimey good to have some friendly banter. pleased you still have your brain attached. I am giving mine away after death of course, as I believe we our inner selves step out of our skins float off to a tropical island on an all inclusive deal. The rest entrails, skin and bone , brain are just surplus to requirements and to be honest the mad scientists can have them bits after the pet food company and the happy sausages company have taken their pick.
Well of recent the GT no not that popular refreshing drink by AL Kohol,,,, no GT and BH one and the same GREAT TORMENTOR --BLACK HEART have been in the ascendance an thid life has been hard without Ddopa I i woodnot eeeeeeeeeven bee tiepin thiz poast I cant even escape into sleep no I go to war when eye sleep oh happy daze my friends the sun still comes up in the evening !!/
HI MY GOOD FRIEND AND FELLOW anti parky sas you are a asset young kind person sasasset an d we need more brave handsome brave beutiful kind strong willed kind and brave yes for sure I would be glad to have you by my side in this ever more ferocious war with GT and BH even if it means our brains being removed from our skulls, yes I know it sounds like a Mr H Lectorish you know the fava bean bloke . but we will be finished, with them and my dear Mother who left us last july used to say when chatting about moving on Well where were you before you were born you werent here were you thats where you were??? you just go back there, oh ok Mam, we would just agree to keep the peace, anyway she will be settled now so I WONT ROCK the boat so our brains how do they harvest them and has anyone on this pristine spotless fawrum had it done we would be deeply intrigued to know, are you hung upside down and shaken with a brain shaker oooter, or perhaps a adjustable brain suction device is used,, bu????R THAT WOULD CLEAR MY SINUSES, whatever they use to remove my version of the most powerful computer in the world I hope they dont go to the bit that fired up the wicked dangerous HYPERSEXUALITY that had me in its grip a few years back thtaT could be embarrassing no doubt some of you my PARKYBUDDIES would be shocked at my voracious appetite for it,, you know it the megapassion on the stairs in the shed in the car anywhere really fun at first but then dangerous, my book will be on sale at alll good pet shops from 22 4 17 at £77.50 HARD back, and£72 ,50 soft back and all monies to the ANTI PARKY MILLITIA so as I was saying if you are planning on leaving our planet any time soon well you wont need you computer so give it up go on you know it makes sense go on go on go on go on go on you wont need it as your spirit freed from the confines of your nut bonce skull whatever will be long gone having immense intense super dupa fun wizzing to the edge of the cosmos and back in 5 seconds, so let them uncase it dont waste it. YOU KNOW IT MECKS SENZE
all YOUSE PALS FED
IM A BIT OF A PARALLEL UNIVERSE FAN TEE HEE OLD AL EINSTEIN WAS OF THAT MINDSET and it appeals to old FED, watch the repeats of AUF WEIDERSEN PET and be blinded by the light.
EDF FDF /?B??/??R fedFED