Reality usually wins! Of course there is no 'new' for someone who lives with a disease process no one understands, even your own consultant! When your own country feels medically 'threatening' and admits, by sending you overseas, it cannot care for you, you do, sort of...feel scared!
When you read (yesterday) that on one Parkinson's medication Azilect , you are not supposed to take Tramadol because it can put you in a coma...and are shocked that you've found an explanation for an 'adverse event' that happened in a local A&E a few years ago also is scary! That my life was saved by ringing a friend to get me out and begging my cancer doc to admit me to a bigger hospital where a drip was put up to flush it out!
Only yesterday do I alarmingly realise A&E docs don't check counter reactions of drugs given! Since the adverse event I refuse Tramadol as I am on Azilect , yet only last year in the same big hospital A&E docs tried to give me Tramadol! I said I could not take it, but they refused an alternative and I was said to have 'refused treatment'! They should have known it would/ could kill me!
Moral of the story, don't rely on docs to know drug reactions! Do your own homework, I was NEVER told NOT to take Tramadol! Or some other drugs too.
Let me return to living in a country where rare diseases treatment, monitoring, understanding is virtually 'stone age'.
It is now suggested I don't have idiopathic parkinson but a weird parkinsonism from 'multiple deletions on the nuclear genes'...in fact defects in my genetics! This was discovered in the UK after nearly 10 years of my twin Ann and mine , own investigations. ANN's dogged medical research, finding the right doctors...the right expertise, the right tests...put us right up there in the expert hands of overseas doctors! Thank god !
It was not the doctors that helped the patient, it was the patient helping the doctors!
Yet knowing you have a multi systemic, neuromuscular, progressive disease where every system in the body is failing due to 'multiple deletions in the nuclear genes' still won't get you the care you need in Ireland .
A multi systemic disease should be dealt with by a doctor or unit that understands that disease.. Yes? Well no! Not here. We twins are parked all over the shop...if there is anyone available to park us with. 'Park', being a useful word and construct since 'movement/travel' is non-existent. I mean the inertia of dealing with rare diseases in Ireland has brought us only in 2015 to opening a poxy office labelled 'the rare diseases office'....where you can write to be essentially told they don't deal with patients. I kid you not!
In the hospitals ...For brain stuff go to neurologist, for muscle stuff, er...don't know , our neurologist takes that on, metabolic dysfunction....no-one, breathing difficulties...wait a year for tests, another for breathing machine found to be needed...still waiting...dystonia...back to neuro, but no treatment other than a drug which does not work; back to the neurologist who overrules Botox treatment recommended by overseas specialists and doesn't know where to send you for gait foot analysis , foot and shoe assessment, due to dystonic foot inversion! Helpful eh?
Gastroenterologist to look after a gut no longer squeezing food waste through the tubes into po! But nothing much happening here...'movement' is NOT an urgent medical concept in Ireland ! Either for
poo or treatment.
Urinary problems as in wet knickers - ah, I've realised some movement does happen...well I got a urologist, true, AND wet knickers. But that's all.
Visual dysfunction...no-one. Food problems, no- one. Mobility problems...still labouring to get a decent powered wheelchair and the movement ...in a straight line forward, just does NOT happen.
Yet getting single appointments for single issues is enormously beneficial for only one person...my taxi driver who gets 80€ for each appointment.
We are living in 'la-la' land. And I don't mean happy clappy either!
