the suffering is unbearable for us twins, in Ireland

looking to see 'HOPE' on the menu!
at the Brain conference.

the suffering is unbearable in a country that seems to despise the public healthcare services, and a country where it decides now that the public who havent the insurance are treated with contempt, on all fronts we have no systems in place.

am i missing something here? because this blog is my testament to the very thing they are speaking of.
do we need research to tell us we are the forgotten ones?
do we really need it?
more of the same?
c'mon doctors, and HSE just get your ducks in a row on this one please!

fighting now for well on a decade for a basic care for serious, very serious progressive neurodegenerative disorder we are now suffering very badly.
this is an offense and a blot on the Irish landscape as it claims its 'in recovery'  yet i am unsure what is in 'recovery' i am not.

when Prof. Hardiman (neurologist) puts up such a slide, we take this all on board, its the truth 

Lists are in order, to explain what is so missing in the care for my twin and i and its stark and having a profound effect.

getting sick a decade or more ago we began a muscle wasting problem but since then no physiotherapy that is sustained or ongoing is ever given, we may get a tiny bit here and there but that is all.
there is no consistent or ongoing hydrotherapy and the fact is both of these therapies have been mooted from day one, well over a decade now since first written down.

this is neglect and an offense under the non fatal offenses against the persons act.
ditto is coercion and harrassment, which we have had in spades.
any harm done has been done by the irish healthcare system.

looking to see 'HOPE' on the menu!
at the Brain conference.

this is for all countries, so....(i think)...we with problems are fucked in this area.

what we have not got and should have:

a neurologist
a neuromuscular specialist
a neuromuscular specialist nurse
a neurophysiotherapist and still without a neuropnhysiotherapy assessment ever.
this is bizarre in extreme.

the effect is 'go home and die.' without sustaining the body as through intervention at a skills level that is what is happening and that is what we have been told by 'default.'

we have no night time care.
not enough PA's to cope.
we have no social outlets or stimulation and every where we attempt to get help we are shown basically 'the door.'

care in ireland in the public system is outrageously flawed, absent and our nation is being neglected en masse but those who have them insurances can never see the difference in the care we receive as opposed to them.

single adults are the worst effected, they cannot produce the family as support and are run ruckshod over, women fare worse as we are believed to be more malingerers and feigning illness than men. the famous gender stigma is perverse and pronounced.

can this wonderful Prof. O. Hardiman say it as it is, YES, she can and in fact is as sharp as a button on the state of this nation!

i am designing a lapel button, it will denote the irish citizen that receives no medical care for the disease burden she has, i will put it on teashirts, car and everywhere and i will quote the World Health Organisation and our fundamental rights to healthcare which we cannot get for love nor money and at present we have neither love for the system nor money to buy the care we need.

posh voices, poor services and that is the way we remain, our voice sort of pitches all towards the elitism of posh voices, the posh voice my friends is an echo of past times, i have no issue being the present gurrier, at least we, as gurriers say the flipping truth and support each other and are the salt of the earth.
by the way i am also unhappy with both Leo Vladakar and Coveney for cooking the stats books, exaggeration is seen through by this gurrier.
meanwhile i make my videos and say it as it is.