Hello there
i havent posted for a long time now. i used to be signed on as betty, but forgot my sign on, got a new job, and a billion others things so i have just re registered. been reading through some posts and its nice to hear/see familiar voices and a huge amount of new people!
the past year has been good to us,my dad is maintaining his health and indepenedce remarkably well, apart from a constant obsession to tidy and clear things out and buy new things that dont need buying!
he still swims each week, goes walking with his friend and spends loads of time in the garden doing and redoing things. I think he is quite surpirsed and inspired by the fact he isnt dead yet, whcih was his intial reaction when he was first diagnosed. so he has a really positive attitude.
however, in reality he is starting to deteriorate in some areas, he shuffles a lot more and forgets immediate conversations more. the last mentall state test showed a 5 point drop last time and so i am now starting to consider the next stages.
at the last consultancy we asked about ebixa ( to start conversation early this time)and as you'd expect the answer was a no, authority cant afford it . so we offered to pay , but he still said no beacuse then everyone will want it and then we'll end up paying for it. of course i have started a whole complaint procedure aginsts this , because i think its important not just for us but for others, to keep the pressure on. however in the meantime i need to find a consultant doctor who will monitor my dad and prescribe the drug when the time is correct. my dad is worried that i am going to fall out with the current consulatant, so deosnt want to push it too much, so i think the answer is a private doctor, but then do we switch entirely or what?
has anyone got any experince of this scenario, anyone got any advice. i have spoken to AS national who have helped with some NHS act stuff and a private doctor list but wonderd if you guys coukld help.
could you let me know if any of your family/spouse is taking ebixa/ what was the criteria for prescribing/did you have troubling gettting it/any tricks to fightin the system.
thanks a lot
hope you are all well.
wendy
i havent posted for a long time now. i used to be signed on as betty, but forgot my sign on, got a new job, and a billion others things so i have just re registered. been reading through some posts and its nice to hear/see familiar voices and a huge amount of new people!
the past year has been good to us,my dad is maintaining his health and indepenedce remarkably well, apart from a constant obsession to tidy and clear things out and buy new things that dont need buying!
he still swims each week, goes walking with his friend and spends loads of time in the garden doing and redoing things. I think he is quite surpirsed and inspired by the fact he isnt dead yet, whcih was his intial reaction when he was first diagnosed. so he has a really positive attitude.
however, in reality he is starting to deteriorate in some areas, he shuffles a lot more and forgets immediate conversations more. the last mentall state test showed a 5 point drop last time and so i am now starting to consider the next stages.
at the last consultancy we asked about ebixa ( to start conversation early this time)and as you'd expect the answer was a no, authority cant afford it . so we offered to pay , but he still said no beacuse then everyone will want it and then we'll end up paying for it. of course i have started a whole complaint procedure aginsts this , because i think its important not just for us but for others, to keep the pressure on. however in the meantime i need to find a consultant doctor who will monitor my dad and prescribe the drug when the time is correct. my dad is worried that i am going to fall out with the current consulatant, so deosnt want to push it too much, so i think the answer is a private doctor, but then do we switch entirely or what?
has anyone got any experince of this scenario, anyone got any advice. i have spoken to AS national who have helped with some NHS act stuff and a private doctor list but wonderd if you guys coukld help.
could you let me know if any of your family/spouse is taking ebixa/ what was the criteria for prescribing/did you have troubling gettting it/any tricks to fightin the system.
thanks a lot
hope you are all well.
wendy