Duodopa anyone else or am I alone


#1

 

        Hello

           About three years ago my assorted team of Neurologists PD Specialists all of whom created over 3tons (metric)of paperwork on old Fed came up with a suggestion, they wanted me to try this new fangled idea of having a external pump feeding a steady dose of Dopamine through the wall of my abdomenemmenemm, can never spell that so I just throw a few letters in a heap and hope for the best, a tube from the pumpsending the dpa direct to my small intestine , a sort of stomach by pass if you like, my reaction being a sqeamish being was you can stick that idea where the sun, well you know what I  mean,however theyears rolled by and I became very ill not just with PD but other nasty ailments such as very very severe water infections, the life threatening kind, chest infections,   numerous falls prostate cancer  and a number of other seriously worrying problems, not the least being DEPRESSION with avengence,    so after taking all these hits ,I summoned the great and the good at NTGH   you know who you are,,,,and decided the only course left to mewas to accept the advice of my Nurse Consultant and try the dpa system, if it failed to improve my life they would remove it

So I had the operation,, I dont like operations... and to cut a long tale short, the improvement was amazing I could walk upright talk  my mood was%110 better, so a total success then well  no I still have the odd shutdown but I am still 85% BETTER  than before some days 95%  so why do I not hear of more people taking advantage of the Improvements offered by the dpa, is anyone out there, I would like to compare notes.

                                          Regards  Fed


#2

sad facecryso I am alone thenfrowncrywink

                                                    Fed


#3

I am sure there are many other satisfied customers but the thing about forums is that people with problems tend to turn to them and the happy bunnies get on with their lives....so they are out there ,happy with their pump, but not in need of the forum!

i do also think many PWP find a funding issue stops them accessing the Duodopa pump system.

Love

GG


#4

Hello goldengirl

                  I dont engage my brain before I post sometimes, I think the reason behind my thinking is I am becoming addicted to dopamine, I am in fact two people one a 99% crippled shell and the other, well me? I become me, sometimes more efficent quicker faster in every way, memory and the agility of my mind is so much improved and of course I dont want to return to the useless shell , for that is how I wake in the morning,the pump is removed at about  11.30 before I go to bed and I take slow release madopar at 12.00 sometimes it works but when I wake at about 5.00 I take two dispersable madopar visit the bathroom then back to bed usually crawling on all fours as I cannot stand,I awake at 7.30 - 8.00 and  my wife unites dpa to human, and within 15 mns I am up and running,the exileration and feeling of freedom is like being reborn everything is possible,so you see where this is leading GG I dont want to be parted from the device which often needs back up of  capsules or dispersible even through t he day, so I am becoming dependant no I am dependant upon the little device I cannot function normally without it , and the most worrying is as PD advances I find  myself needing more and more dpmine just to retain minimum function, I m addicted to normality, and I cant  or dont want to go back I am frightened of bedtimes for I go into deep deep slumber and when I wake I have to face all these conflicting emotions over again,I fear sleep and  lust after normality, where do I turn to what do I  do.

                                              Kindest Regards  Fed


#5

The last time my pd nurse came out to see me , we were talking about medications for pd and she was talking about the duodopa system but she said it was a relatively new thing in the uk and not many people have the system at the moment  .


#6

Hello my friend

             Its always nice to hear from you Shelly, I was told when I decided to have Duodopa that I was one of three in North East uk to have it, and it took so much work  by my fantastic team at NTGH to obtain funding so you will understand my feelings of guilt when I tell you that I almost failed, I did in fact tell those excellent  team of Consultants and Nurses that I could not go through with it, I bottled it I was a coward really but thanks  to my PD Nurse Consultant who gently and sensibly got me back on track I had the op, and the systen has made so nuch difference to my life, I still have episodes of  quite bad shutdowns which plunges me into black depression, but a quick push on the boost button and i  10 - 15mins Im up to speed again, so although its of great benefit its not a cure and I cant sit back and let the device  do all the work, I have to be the most vigilant of vigilantastic vigillationists able to vigilise very vernuptously ,,sorry I am being silly but you see thats the effect it has when installed and working every thing runs at light speed there is only a slight problem with dyskinesia but I can deal with that. Thank you for responding Shelly , always at your service.

                                        Fed Exlike              Fed