DuoDopa


#1

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


#2

.hi Taco 

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

Casie


#3

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  

Pete


#4

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.  

Gerry


#5

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

                                                     FED


#6

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.


#7

 

  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

                                                     FED


#8

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.

Casie

 

 


#9

big grin

                   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


#10

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


#11

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!

GG

 


#12

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


#13

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.

Take care.

Love

GG

 


#14

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


#15

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.

GG

XX


#16

 

     Wow  Tee Hee remind me im on your wing when WW3 kicks off (not  long  now)

                                                                FEDcool


#17

Phew,!

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.  


#18

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 !!/

                                                          FED


#19

cool 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  FEDcool


#20

coolIM 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