What to do if you want really good palliative care?


#1

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 ?


Ojalahey

 


#2

I'm not sure what you mean by 'palliative ' . To me, palliative care is the care given to terminally ill patients, usually cancer patients, for whom there is no further surgery possible, usually to ease or eradicate pain. That is the modern usage of the word, certainly.

Do you mean symptomatic care? I assume you are not terminally ill. If you are, then I apologise.


#3

Island Mike

I've used this term for a while to mean treatment of symptoms without addressing the cause.  I looked it up and as you say it has the 'terminal' connation , so I've got the wrong idea about the word ... funny that nobody's questioned it before .  So thx for that... i will  see if i can change the heading ..

rgds Ojalahey (aka Andy)