I am on LEVODOPa (125x6) plus DAgs(16mg) .. treid MAOB inhibitor SELEGELINE with little effect (so stopped it) ... and recently put on MCOMT inhibitor OPICAPONE MAINLY COS I was getting loads of OFF time between doses of LEVODOPA ming life pretty difficult. (I am 6 yrs diagnosed)
This latter drug is new and has increased my ON time by 2 hours and it is better ON time... !
I report back to my NEURO (after 2 mths of drug) soon and i have a dilemna in that i would like to have DBS sometime because it seems to make such an improvemnt for the people who talk about it online but i fear if i am too enthusaistic about OPICAPONE he wont consider DBS for me . I ave been really pleased with OPICAPONE but get the impression that DBS is in another league. Maybe its a sort of greedy thing but i want want to give myself the best chances not just 'get by ' ... then given that DBS exists (and APO PUMPs or DUODOPA for that matter) and if they are the quantum leaps that people seem to report then i want to be considered for them too. I reckon if i say i am alright (ie: 'quite' good) my neuro will forget about me ! They see so many folk that you have to be in a bad way to get attention. If u r doing ok but aiming to do well the system will ignore u unless u make a lot of noise !
So i am aware that some people may think what's he complaining about and i understand that if you having severe symptoms this might seem less than a priority.
But i think that if it is possible to have high functioning palliative care why not try to get it ... i get the impression that the medics are satisfied with medium functioning palliative care but whilst thankful for that i wonder if it could be better. What bothers me is that you have to be low fuctioning to be considered for it!
Does this ring any bells for you ?