Is anyone on duodopa and willing to share their experience?


#1

Hello everyone,

I work in the policy and campaigns team at Parkinson's UK and we're trying to ensure that duodopa (also known as Levodopa Carbidopa Intestinal Gel (LCIG) continues to be made available to all those who need it. To help us do this, we really need to speak to people who are currently on duodopa.  If you, or someone you care for, has been prescribed duodopa and it's made a positive impact on your life, please get in touch and let us know.

You can email me at mvine@parkinsons.org.uk or my colleague Laura on lconn@parkinsons.org.uk 

Thanks all, Morgan

 


#2

 

                I sent you  a mail yesterday Morgan re  the  Duodapa system   did  you  receive it, it  has  been  helping me live  a normal, or  normalish life  for four yrs  on  10  04  17, of  course its not  a cure as  we  know, but  if  I was refused  the opportunity to partake in the great  Ddopa trials I WOULD NOT  BE  HERE  typing this post and I would recommend the sytem to anyone   system,  to  anyone it  even makes  me  smell  betta,,   nope  spell better,,  thats  it,

                                       Please contact if you wish

                                               FEDcool


#3

   AmI  I  the  only person in the forum to have  Ddopa   its made  me  think im priviledged  which of  course I am, so if I am the one  dont  you  want  to  speak  to  me   I feel hurt left out like  I used to feel when   dad  took me fishing, it  used  to take  me  ages to  swim bacck to shore, then I heard  Mam arguing with  him, "no no my sons nivver  ganin  doon  thr  pit , that hell hole is not claiming   my youngest  bairn now  listen av  gettin  him  a start on  monday doon  the asbestos factoty  noo  thats  mee  last  ward,  boy  waas   I glad,??,  so  Im  hear if  you  need  me

                                                                   FED


#4

Well I would but I've not been accepted yet.    I'm wearing the wrist monitor for a week so the doctors can analyse the results then a bed has to be found, have the medication given through a nose tube and then, finally the implant inserted if I  react well to let it.

Can someone at ParkinsonsOrg.uk please help me because the hospital have given two of their CDs to me about Duodopa but they won't play on my DVD player.  Is this something that you can help me with please.

 

many rhanks

 

Casie

 

 


#5

Hi Casie, 


Sorry to hear you're having trouble with the CDs, have you tried playing them on your laptop or PC? If that doesn't work, perhaps it's worth getting in touch with the hospital to see what might be the problem with them.


Best wishes,


Min


Moderation Team.



#6

eye rollcool

                      As you can see CASIE the smileys are   you and  I and today is  one  of  the most  important days for pd  afflicted folks,  yes kind  person, its  Sods law  day,  examples  true  not   part of old  FEDS  over active imagination,, are  this Ive had a terrible  morning  with  BLACKHEART  hammering me  onto  my  knees, making it impossible to move even 2  boosts of  old  trusty  Ddopa failed , its  fine and  sunny  you  see  Casie just  the  sort of  warm  but  not  too  warm day  I  can potter on my  MBS  GT,  ,WE have a  favourite place in  the  local dead persons  departshire point Seghill church  yard, I have played here since  I   was 7tyrs    BPE,  (work  it  out)  a clue we could  play  in  total  safety  I even  used   to  sit  in  the  church at  night black  dark with  my   Trusty  Loyal  German  Shep  at   my  side,  so  where  was, oh  yes  SLD, I can gurantee i willl  recover  in  time for  the  rain  due  later  this  is  SLD  IN  ACTION,  Casie three times  in  the  last three  weeks I have  had all  the  Euro Millions   numbers  bar  one,  in  other  words   1   instead  of  2,  7 instead  of  six  32  instead of  31 three  weeks in a  row  you  should  get  at   least  £30 000 for  that  but  no  it was a  severe  case  of   SLD AND THAT  MEANS  NOWT   so   whenever  I have a bitttooohluck  or  a  gift  of  any type  I check   and  check  x  1000 as  usually  SL   kicks  in   and  the  gift  wont  work  when  you  get  it  home  or   the  ticket   has  the  numbers  from  6wks  back,  so  my  dear  kind  person  whenever  a  gift  or   a loan  is offered  and  accepted  check to  see  it  is  in  working  condition  for  as  you  were  the   last  person  to have  the  aforsaid  discs,,  you  will  get  the  blame  my  dearest   ANTI  PARKY   WING  MAN , tuck  in  close  for  its  SLD  until  midnight  and  be  extra ,

ALERT  ENGLAND  NEEDS  LERTS

                                  your buddie  FED    ps  have  you   seen   my  COAST  to   COAST  POST


#7

confused

confused

           Right  based on  the  last  post   the shutdown  bit  which still  ocurrs now  again  and  sometimes  it  wont  ????er   ofF  ,  no   sir this  gives BLACKHEART  a  tottaly  undefended  brain,  you  see  a  substial   bit  of  parky  peeps  have  a  faulty  niagra,  so  when  old   FED  keeps  topping  up     with  Levadopa Carbidopa,  via  the  CADD  Legacy  Ddopa  pump,, well  old niagra  simply   stays  in  bed  all  day  (lazy  ar?????e)  the  logic  being  if   hes  doing   it  why  should  I  bother   so  you  see  my  friend   the  Dd  is  exellent  but  not   a  cure,  so when  yo  have  the  wee  beeestie  attached  you   must  stay  ALERT  ALERT OF  LERTS  ARE  NEEEDD,  take  care  my  friend,  oh and  dont  hesitate  to  ask  me  anything  at  all

                                                   WnCO   FEDexlike  OR  FED