in the context of world change a person is only as truthful as the records they keep as life moves on...this way the truth is presented fresh at every recounting.
note taking is a guarantor that truth does not become distorted over time..
as long as you are truthful in the first place.
lets watch how note taking can go.....
how many times did the HSE discuss your adaptation grant with you...the circular amongst the professionals being that contact with awww was 17 times.
maybe so but what does awww say...she says, contact was made seventeen times..for what...the first was introduction to the area, followed by broken wheelchair followed by two broken scooters followed by a crashed van and so on and so on, also to try out the powered wheelchairs and to arrange the time of day and the day that all came so it could be done.
that makes 17...did you discuss the adaptation grant?
yes...how and when?
well i met the OT to discuss it.
did you discuss.
sort of.
what happened then...i said what i wished for to help me in the home...
do you think you were heard
no
why
she stayed about ten minutes and said she only ever did bathrooms and kitchens and she had not done them in a long time
out the door and a verbal recount with Dr. Raging Wheels
what has happened with the grant
well...i got it
has anything been done
no
why
well they only ever did bathrooms so they demand i get a whack of a wet room
do you need it
no
i have other disabilities that could far better be served with this small amount of grant
ah so.
well nothing then
ah so.........er no..........nervous breakdown looming
regarding professional speak one has to be very precise and reasonable.
why do you need a wet room and twin never needed this and had two bathrooms escaping the glance of the OT on the trot
well see, you (that is me) have a neurodegenerative disorder your sister has parkinsons.
i kid you not!
ah yes soooo.
eh then, is parkinsons not a neurodegenerative disorder?
or did the note taking go a bit array and my neuro used the word 'degenerative' and her's
'parkinsons.
note taking accurately is so important but more useful if you tell the truth and have your facts right and actually know what you are talking about
my note taking today consists of
-rang the neurologist
rang the rheumy in London. i get an answer from them, still waiting for the neurologist.
then i rang the health centre
will we go 'why?' again?
ah yes.
i collapsed;
i got no return call back
nor from the hse whom i also called
i went down to the health centre
they cannot do nothing about being unable to put in place my five hours a week home help/
i am funded with the funding for the under 65's and twin is funded from the fund for the over 65's/
i kid you not!
why
well.....heeeeeheeeee heeee heee (wait for it)
she has parkinsons and i dont!!!
now if you are still with me and understand note taking and understand the above, please let me know.
i am now off to have the nervous breakdown with my chihuahuas on top of me and a one eyed teddy needing loving.
i am also saving on the electricity bills.......get a chihuahua or two, especially one that is prone to bite...a hse official.
AWNYAH TODAYSAY Ann living in the Republic of Ireland and it is not a good thing. We have now ratified the EU convention on the rights of people with disabilities, yet we failed in ratifying the optional protocol, allowing us ability to make complaints to the EU under the convention, with little facility to do so in our own country. We go unheard in every sense of the word. This is unjust and leaves us more vulnerable and open to abuses. We are suffering. I am suffering.
Tuesday, November 20, 2012
Monday, November 5, 2012
Tuesday, October 16, 2012
there isnt much to think about any more
i wondered again today what is the point in it all.
am i right to be defeatist when i really want to stay very attached to life and positivity?
is it actually the real me or is it not?
suddenly i begin to feel very outside of self now.
i have so little joy in my heart right now.
Ireland is turning into a country i rather not even admit belonging to, being a citizen of, and being proud of.
we destroy far more than lift up and is it particularly irish to rip through someone as in pick on a persons foibles, character traits and personality like the bully in the school yard?
it is a sign that my country refuses to grow up.
we wil remain ever the 'paddy whacky' irish.
to see Enda on the cover of Time magazine, all shopped is a bit ludicrous.
world leader eh? our enda?
when he stands up and says we are a 'modern society' what exactly does he mean?
does he mean that by reducing disability pensions, reducing home help hours, reducing Personal assistants, stop funding for special shoes, stop funding for electric wheelchairs, stop funding for special needs school assistance he can make Ireland a tiger again?
He cannot.
when you start a reductionist programme which will wipe us out as in sedate us out or put us away into the nursing homes, reduce us to nervous wrecks at this possibility, reduce us to anxiety beyond which we can endure and have us throw the tantrums of despair that then has others throw their hands up an declare, 'i told you so, she is a right daughter of a bitch!'
and you are reduced to crying under the cover of darkness at how you have been brought so low in your confidence, self esteem and the need to roar like a lion in the face of the impending stampede of the tiger!
so you cannot walk tall anymore, or even walk at all. they have stopped funding for shoes, wheelchairs and only provide you with a victorian adaptive aid, the good old stick but this time not wood but composite steel.
we will have a stick for the blind and a stick for the deaf, a stick for the lame and a stick for everyone in the audience soon.
you wont get much else in the goodie bag anymore.
wracked in pain too causes the tantrums.
your spine is closing over and you are on three different types of pain killers including morphine.
you do not have physiotherapy nor no chance of getting to a specialist in pain relief any way soon.
when your new home help does a sickie on the day before she is supposed to start working in my home, also could cause the tantrum.
Recap on the life of one disabled Irish woman:
no home help
no physiotherapy
no special shoes
no wheelchair (electric)
no visitors
no support for having asperger or ptsd
no relief from stress or anxiety of what will happen me and the twin sister.
plenty of
anxiety
depression
lonliness
pain
despair
boredom
futility
all caused by Enda's modern society and how he is going to make us rich again.
Hi Enda, hello Enda, are you there Enda, will you have a photo of me?
Do i want one of you?
No Enda.
good bye Enda, will you End-a?
am i right to be defeatist when i really want to stay very attached to life and positivity?
is it actually the real me or is it not?
suddenly i begin to feel very outside of self now.
i have so little joy in my heart right now.
Ireland is turning into a country i rather not even admit belonging to, being a citizen of, and being proud of.
we destroy far more than lift up and is it particularly irish to rip through someone as in pick on a persons foibles, character traits and personality like the bully in the school yard?
it is a sign that my country refuses to grow up.
we wil remain ever the 'paddy whacky' irish.
to see Enda on the cover of Time magazine, all shopped is a bit ludicrous.
world leader eh? our enda?
when he stands up and says we are a 'modern society' what exactly does he mean?
does he mean that by reducing disability pensions, reducing home help hours, reducing Personal assistants, stop funding for special shoes, stop funding for electric wheelchairs, stop funding for special needs school assistance he can make Ireland a tiger again?
He cannot.
when you start a reductionist programme which will wipe us out as in sedate us out or put us away into the nursing homes, reduce us to nervous wrecks at this possibility, reduce us to anxiety beyond which we can endure and have us throw the tantrums of despair that then has others throw their hands up an declare, 'i told you so, she is a right daughter of a bitch!'
and you are reduced to crying under the cover of darkness at how you have been brought so low in your confidence, self esteem and the need to roar like a lion in the face of the impending stampede of the tiger!
so you cannot walk tall anymore, or even walk at all. they have stopped funding for shoes, wheelchairs and only provide you with a victorian adaptive aid, the good old stick but this time not wood but composite steel.
we will have a stick for the blind and a stick for the deaf, a stick for the lame and a stick for everyone in the audience soon.
you wont get much else in the goodie bag anymore.
wracked in pain too causes the tantrums.
your spine is closing over and you are on three different types of pain killers including morphine.
you do not have physiotherapy nor no chance of getting to a specialist in pain relief any way soon.
when your new home help does a sickie on the day before she is supposed to start working in my home, also could cause the tantrum.
Recap on the life of one disabled Irish woman:
no home help
no physiotherapy
no special shoes
no wheelchair (electric)
no visitors
no support for having asperger or ptsd
no relief from stress or anxiety of what will happen me and the twin sister.
plenty of
anxiety
depression
lonliness
pain
despair
boredom
futility
all caused by Enda's modern society and how he is going to make us rich again.
Hi Enda, hello Enda, are you there Enda, will you have a photo of me?
Do i want one of you?
No Enda.
good bye Enda, will you End-a?
Sunday, September 9, 2012
Protesting is Normal
Being a disabled person doesnt mean that political activity is not part of the remit.Indeed it is more part than not so with a zest and zeal like none other, the pink hatted twins stepped it out, well half and half really.
We desperately tried to manually push a wheelchair with our bodies in it, this isnt easy with a muscle wasting condition.
we then desperately attempted to push a wheelchair with our bodies behind it, step by hot step on a very hot day.
I could not sustain that pace and commondaired a passerby, very obliging, hansome man.
I look back at the times when i was a volunteer with Friends of the Elderly in the 70's.
How i thought the old ladies and men's adoration for us young ones so sweet and endearing, and did so rather patronising the frail beings who gave us the confidence to do what we did.
- i felt all good inside to help.
-I am surre my handsome young felt all good too, but i personally sank an inch deeper in my wheelchair and felt a little less sure, a little less confident.
This confidence, can be eroded by dependency.
small acts can bring it home in a very embarrassing manner.
the day we hobble out in pink with bowlers, all pink all identical and doubling up as only we can do. for being disabled for me, means my right hand man/woman is also that as well.
its cringe stuff when depending on others in such a massive way.
In other words, for all the bravado and the reality of the fun which is it, its major cringe and major distressing - denotes -
Disability.
Its a fact of reality that someone has to do the job.
being a person with a disability, that is.
Without us, there wouldnt be a fair bone in anyones body.
Why, because we are seen and people learn a thing or two.
Protesting with disability shows the world, 'Oh Lord, they can do THAT?' "Oh Lord, yes we can"
Of course we can.
a Protest is good for the soul if it yields results, which the last weekend did.
Its good for everyone's soul for the very reason i mention above.
It is not a matter of cringe pathetic to watch disabled people protest so we get results.
its a matter of personal inability to deal with severe government cuts and what it means to us.
We had to do it, and you cannot put disabled people down.
Nor, can an institution ignore this fact that the disabled, like the poor will always be without.
why in gods name do people once in government begin to feel that you can actually destroy a human being in this manner as if worthless.
the polititian of today or yesterday may well have been the young good looking chappie who did a bit of social awareness when they were green under the gills.
this time the reporting of protest is, we made a punch of effect and had a proposed cut withdrawn.
Independent living or lack thereof withdrawn.
but like an onion there are layers to this thing called provision of care for the vulneralbe
My family rounded on me a day later. and it was devasting to hear the sort of thing that seemed to be the crime in the act of protesting.
To actually do it, as one of the siblings said, 'looking for attention.
so explained written i end with a steep pull up and put down, WE are Worth The Protest and most effectively - WE GOT THE RESULT!
as for family - THEY SHALL BE FORGOTTEN FOR NOT APPLYING THE CHRISTIAN MESSAGE ANYWAY.
now, shoes, "Did i hear anyone say something about shoes?"
 |
| Add caption shoes |
Wednesday, August 29, 2012
Not just a teeny bit of it! RED!
to write once prompted is to speed up a voice and activate RED, upon RAGE and Roar RED.
when a chance to say a word, or two is paralleled with a prompt and paralympics and a debacle as an adaption grant application for a disabled person all come together - on one day, on one page, the story is Hot and getting hotter.
Ann has Rage, once prompted by injustice, decades of it, Rage is a response to abuse, neglect, abuse, dismissal and now a shell of a home. In the name of disability grants for the disabled.
We (I) got a grant for adaptions that are not needed in this moment in time.
yet some manager, somewhere, here, i have not met nor even know its gender or medical qualifications.
I have been told a disabled bathroom for a person with paraplegia or quadraplegia is my requirement (i walk, even if badly). My request for adaptations covered the gammut that are my disability. The inability to sustain walking when my legs have atrophied, are in pain, coupled with chronic fatigue brought on by neuro-degeneration and many autoimmune diseases.
I have a spanking bathroom whether i like it or not.
i have a ramping of concrete practically encircling my new bungalow costing over E1,000 whether i like it or not.
I have, due to inability to cover the rest of my need, floor space for wheelchair because i have had to biff out a bedroom (planned for in-home care) and this leaves me with a shell, of a usable home for a wheelchair but no storage, no floor covering, no paint inside and out, no bedroom for a carer, a tiny add on extension to give more room around the bed but mostly cos of the massive bathroom that THEY said i needed.
a meeting - red letter day, we had on para day on a photo shoot day-a bloodletting day of curdling proportions.
Tears and no understanding that three men, one professional, one disabled professional and one disabled, all trying to justify a stance that leave the red blooded roarer in the wheelchair in tears as none of the ruddy work that has now been planned completes for me a home that is actually a home for a disabled woman!
we will have a concrete moate, minus the flowers so magnificent the estate i am in think in wonder of the wee little woman who put it there now deceased and a whacking great bathroom and no money left to even put on paint or floor covering.
my red rose day of red roaring ruptured soul and spit and men in trousers dictating and a woman with a clipboard.
oh and i know about the clip board bit.
the one who tells me she doesn't remember what i had spoken about when moving here and applying for an adaption grant and then did it matter anyway because some Manager somewhere had decided before i ever arrived.
Also the Liberation of paras worldwide, in an age of enlightenment sees a paralympics sponsored by an organisation that has been co-opted to lop off 50,000 english disabled persons from any grant or living allowances they were entitled to and made them all go back to work, even if you are on dialysis they can say this, and that one person i know of died within a year of losing all her support grants.
that crowd is floating on the wisdom of newton and coloured umbrellas with singers in prison overalls, co-oped to sing the national anthem to the Queen of all Queens overseeing the overhauling of cuts on an olympian scale who according to the anthem will uphold its laws of the land.
can i cope.
well who cares, who asks and who bothers.
colour - umbrellas, wisdom, newton and aesthetics.
One thing for absolute sure, the message was uplifting, the show was dynamic, better by far the fumes of slavery and the industrial age.
but it is sickening overshadowed by the underworld of heavies in our society who are determined that every disabled person on the planet will have life made just about as hard as they can make it without discrimination, realisation or even asking or inquiring do they mind or do i mind.
I do, mr. umbrella of wisdom, newton and hic or whatever they wonderously discovered recently.
it wasn't humanity and that i do know.
Anyway sorry. Thats considered a Rant to able bodied minds.
its considered the truth to a disabled body and beautiful mind of an intelligent woman.
To prove the beautiful bit and what Red can do, remember folks the red rose of tears, on the days that was in it, in the bushes crying at Harold's Cross, Rehab and Hospice after a consultant - (male), had informed me, in no einstein experiment of medical examination that my muscle wasting was due to inactivity and lack of exercise - yep, did he ask me my lifestyle, nope, but he deduced it.
yep, by seeing the mobility scooter by my bedside, for which he clarifies his diagnosis on, again the red rose blood bellied froth of anger at another abuse of power who abused his power by telling me that i am lazy and my muscles had died because of it.
This my friend, despite it been proven, medically, in another country, that i had a condition of muscle wasting that was consistent with disease not laziness.
we have an enlightened age for disability, especially when it rains ...or even if it doesnt, the colours go up anyway.
wise eh, well, just in case.
i will ask my friends who own colour of any hue of place, emotion or other, say it, share it and it will be a better more colourful place by far.
i thank http://www.travelsupermarket.com/c/holidays/capture-the-colour/ for sparking in me a written response that sparked a creative response coupled with imagery on the road rather not travelled today, the red road to the lion of sparkling grey tin of utter ignorance of stuffing.
Not even wanting to be any different either.
Sarah Henderson, Chrissy MacNeill, Margaret Brown, Doreen Kennedy, Keith Hern and Michelle O'Neill, all magnificent photographers, all with either an illness or disability or vulnerability who want to change a world by making a difference through creativity. Share and copy,
Say it with Flare, say it with colour. Never fallen, or faded, tis RED by any colour, tis.
I am on the RED letter Roaring day.
when a chance to say a word, or two is paralleled with a prompt and paralympics and a debacle as an adaption grant application for a disabled person all come together - on one day, on one page, the story is Hot and getting hotter.
Ann has Rage, once prompted by injustice, decades of it, Rage is a response to abuse, neglect, abuse, dismissal and now a shell of a home. In the name of disability grants for the disabled.
We (I) got a grant for adaptions that are not needed in this moment in time.
yet some manager, somewhere, here, i have not met nor even know its gender or medical qualifications.
I have been told a disabled bathroom for a person with paraplegia or quadraplegia is my requirement (i walk, even if badly). My request for adaptations covered the gammut that are my disability. The inability to sustain walking when my legs have atrophied, are in pain, coupled with chronic fatigue brought on by neuro-degeneration and many autoimmune diseases.
I have a spanking bathroom whether i like it or not.
i have a ramping of concrete practically encircling my new bungalow costing over E1,000 whether i like it or not.
I have, due to inability to cover the rest of my need, floor space for wheelchair because i have had to biff out a bedroom (planned for in-home care) and this leaves me with a shell, of a usable home for a wheelchair but no storage, no floor covering, no paint inside and out, no bedroom for a carer, a tiny add on extension to give more room around the bed but mostly cos of the massive bathroom that THEY said i needed.
a meeting - red letter day, we had on para day on a photo shoot day-a bloodletting day of curdling proportions.
Tears and no understanding that three men, one professional, one disabled professional and one disabled, all trying to justify a stance that leave the red blooded roarer in the wheelchair in tears as none of the ruddy work that has now been planned completes for me a home that is actually a home for a disabled woman!
we will have a concrete moate, minus the flowers so magnificent the estate i am in think in wonder of the wee little woman who put it there now deceased and a whacking great bathroom and no money left to even put on paint or floor covering.
my red rose day of red roaring ruptured soul and spit and men in trousers dictating and a woman with a clipboard.
oh and i know about the clip board bit.
the one who tells me she doesn't remember what i had spoken about when moving here and applying for an adaption grant and then did it matter anyway because some Manager somewhere had decided before i ever arrived.
Also the Liberation of paras worldwide, in an age of enlightenment sees a paralympics sponsored by an organisation that has been co-opted to lop off 50,000 english disabled persons from any grant or living allowances they were entitled to and made them all go back to work, even if you are on dialysis they can say this, and that one person i know of died within a year of losing all her support grants.
that crowd is floating on the wisdom of newton and coloured umbrellas with singers in prison overalls, co-oped to sing the national anthem to the Queen of all Queens overseeing the overhauling of cuts on an olympian scale who according to the anthem will uphold its laws of the land.
can i cope.
well who cares, who asks and who bothers.
colour - umbrellas, wisdom, newton and aesthetics.
One thing for absolute sure, the message was uplifting, the show was dynamic, better by far the fumes of slavery and the industrial age.
but it is sickening overshadowed by the underworld of heavies in our society who are determined that every disabled person on the planet will have life made just about as hard as they can make it without discrimination, realisation or even asking or inquiring do they mind or do i mind.
I do, mr. umbrella of wisdom, newton and hic or whatever they wonderously discovered recently.
it wasn't humanity and that i do know.
Anyway sorry. Thats considered a Rant to able bodied minds.
its considered the truth to a disabled body and beautiful mind of an intelligent woman.
To prove the beautiful bit and what Red can do, remember folks the red rose of tears, on the days that was in it, in the bushes crying at Harold's Cross, Rehab and Hospice after a consultant - (male), had informed me, in no einstein experiment of medical examination that my muscle wasting was due to inactivity and lack of exercise - yep, did he ask me my lifestyle, nope, but he deduced it.
yep, by seeing the mobility scooter by my bedside, for which he clarifies his diagnosis on, again the red rose blood bellied froth of anger at another abuse of power who abused his power by telling me that i am lazy and my muscles had died because of it.
This my friend, despite it been proven, medically, in another country, that i had a condition of muscle wasting that was consistent with disease not laziness.
we have an enlightened age for disability, especially when it rains ...or even if it doesnt, the colours go up anyway.
wise eh, well, just in case.
i will ask my friends who own colour of any hue of place, emotion or other, say it, share it and it will be a better more colourful place by far.
i thank http://www.travelsupermarket.com/c/holidays/capture-the-colour/ for sparking in me a written response that sparked a creative response coupled with imagery on the road rather not travelled today, the red road to the lion of sparkling grey tin of utter ignorance of stuffing.
Not even wanting to be any different either.
Sarah Henderson, Chrissy MacNeill, Margaret Brown, Doreen Kennedy, Keith Hern and Michelle O'Neill, all magnificent photographers, all with either an illness or disability or vulnerability who want to change a world by making a difference through creativity. Share and copy,
I am on the RED letter Roaring day.
Tuesday, August 28, 2012
witty? No, but Oh!
Oh my! i have not written since June but then i heard from Chrissy O'Neill and then i was spurred...on by...a link.
Yes, she sent me a link so we investigated right and proper, and it was to http://www.travelsupermarket.com/c/holidays/capture-the-colour/
so really how could i NOT write a blog?
I am here to speak, yes for today i say i have an image.
I think it is nice but then i took it and so i have to remind all that we (I) can be either selective, right or biased.
I possibly am all three to be honest.
Now i look at it i see a small bee buzzing, and bet its out of focus.
it would be.
er, no pun intended.
i was perched on a mobility scooter in a rehab centre for those with chronic illnesses. I escaped this evening as sun was fading and the light was really wonderful.
To the Roses i go each day here, a Rose garden within a complex of a rehabilitation centre for Rheumatology conditions and also a Hospice.
My escaping was wonderful for i did it daily more than once.
I escaped at Dawn, mid day, middle day, afternoon, middle afternoon and eve.
and sometimes, i cried there. Sometimes i sat and was all melancholy and quiet.
But mostly i was within a zone of complete and utter peace, smell magic, see beauty, surrounded by calm, leaves, colour, and more so and forever.
I was at one with nature, myself, my being and my many conditions. To escape pain, escape confrontation of illness, escape encasement within alien environments that only hospitals and peaceful dying rooms can be.
to escape turmoil, as only i know it and knew it then.
the sort of frantic wish to escape and a need to see if beauty can actually do this sort of magic trick of transcending.
It can, and it does. Look at my white, pure with butter colour touch?
see a small bee, kiss as lightly on the edge of sweetness.
can you hear the buzz? I can.
Can you smell the dusk approaching? Oh yes, i can.
What say you of the Peace then within.
Oh, oh. Oh, i can. that is all that is to say of it.
No more.
I have a glow, a petal glow of fragile safety within a fractured soul.
I have found the capture for me alone, in this world, alone capture for soul and being, a fragrant flower, drawing me to it, the bee and all together gather, shrouded in leaves and shelter, i am here now. At a whiteness of peace to me.
I am ok.
All is ok and for the space i give myself in the rose garden with my camera, i can be alone but aware of wonder. It is always so. A link together a creative need to stay linked to nature and aesthetics and wonder, to transcend pain, a lot of it.
i invite my friends all photographers to join in this blog, find an image and place within this competition and capture their colours. GO, Capture the Colour i invite
Margaret Brown,
Michele O'Neill
Doreen Kennedy
Lois Davies and Sarah Henderson to come and see what Ann is saying to you and about what and with what and how....
Friday, June 1, 2012
Ireland will let us die
without a doubt my country will let us die...i speak of my identical twin and myself - two women with a rare condition - Congenital Rubella Syndrome.
Dr. Raging Wheels is my twin. You will get to know her too - if either of us remain alive in a health system that is simply euthanizing the useless, aka the disabled.
My twin and i - for instance.
We reel from one crisis to another.
we live but a quarter of a mile from each other or less and we cannot even get to each other easily.
we are promised electric wheelchairs which we have tried out.
like carrots teasingly tempting us to sit, we then see em packed away in the white van that brought them to our doors, we now wait on a list.
and so it is with most things.
we reek with conditions, as each of our body parts crumbles due to an invasive virus Rubella which my mum caught when expecting us.
we have not hit 60yrs but I bettya Ireland is sure we wont.
We dont have the wheelchairs but what else do we not have?
we do not have CARE, period.
Little or none and what there is is chaotic, unpredictable and predictably AWFUL.
what is left at 'fallout' end is two exhausted women shocked to the core that any european nation could do this.
Most people in this society rely heavily on the extended family - what if there isnt one, or one that can be or is willing to be caring or even recognise our distress, what then in holy ireland?
if we do not have this extended family we are finally in the custody of the state, which is bankrupt.
Neurology for instance, has cover the lowest in europe.
and my twin and i do not even register on the richter scale even though we are supposedly being cared for in this system.
we have not been jotted or noted in our chart for two full years, that is, no note has been made of us being in that system and yet we have and yet we see and dont see a result.
we see the consultant on no set regular expected consult, we have to hope and wait, and wait and wait that someday it will be decided for us to be seen.
we also do not even know what we have, for the jury is out on that...well...to us it as no formal diagnosis has been made, again, nothing has been formally documented-nothing being written in our notes.
if we ask, we are considered pesky and persistent and irritants.
We do not easily slot into Post-polio, dystonia, parkinson's, ms or als. we have some and not the other and none of them but all of them, whatever.
we are dystonic and parki and have a post rubella.
but what is the definitive diagnosis and how are we to be cared for with it?
does one of the twin's come off her parkinson's meds and why is the other hardly been medically controlled of her jigs jerks and dystonia.
we get the botox jab in my neck and twins foot/ankle but is that dystonia due to dystonia or parkinson's.
we both tested positive for parkinson's on a DAT scan which is considered 97/% accurate.
we don't get considered as having it and half the jury is hung or out and we are slashed and drawn in confusion and dispair.
what about the other...the endo who discharged one back to gp, that is the senior reg discharged the twin without even consulting the professor of neurology who referred her to him.
that is 'out on your ear, mate,' without further ado.
that is, us being sent to the consultant of endocrinology, (we haven't seen though, due to the rarity of the situation), sent for the expert opinion but in the opinion of the registrar, not yet a consultant one twin has been shifted back to sender.
Deformed feet with special shoes, well yes, but two years ago funding dried up for them and so i hobble, now one foot has collapsed and i am working with fallen bones. I also have a short leg but as the shoes went so did the lift, that is all of two years ago.
what about physio, well, yes, i get four blasts every six months.
that is my friends, about half hour at most working on generalised dystonia and then after two hours every six months i am told to get on with it.
any expert nurses around for the following - ceoliac, crohns, sjogrens, raynauds or arthritis?
no, you join these sort of support groups for the support grouppie advice.
that is the sjogrens associations, the raynauds etc.
these are non medical conglomerations of well meaning and charitable organizations who do trojan work, but they cannot interfere with the medical supervision of the various conditions they are trying to support.
we don't have the medical supervision and we have all of these, well i do anyway!
you can get all the advice in hell on these but you need to have the provision, advice without such is useless.
how about deafness and blindness - well none of that is much public health concerned as the public health hearing aids are just about useless for those of us who are touching on only having 35%.
we have a shortage of just about everything.
and just about everything my twin and i have with just about nothing by way of care, family, support, apparatus, funding and access to transport or other.
We will die.
I personally who had the misfortune to be in the psychiatric system will surely die, as i am shunted to the virtual wards as soon as i arrive in A"E anyway. that is ED to a lot of countries, but here in Ireland these are documented to be seriously dangerous for your health and fatal for psychiatric patients, known to be.
without family to watch over you, no one can call a halt to maladministration of health care for the least able.
how can one person with parkinson's disease who is recovering from radiotherapy help the other who has generalized dystonia once in the psych system who ends in A'E/ED with a crohns blockage, both deaf, both women, both in wheelchairs, both clapped out help one from dying of crohns blockage/peritinitus? well, we lost one sod in southern ireland whom they left too long and who died, sure i am surely going to be next as he was abled bodied and had two small chizlers, whom he left behind.
we are forgotten in the melee.
who do we want to hear this?
well who will hear?
and who will cry out and not allow Ann and Margaret, the terrible twins to suffer this indignity at the age of only 57yrs.
it is no good making documentaries on a wonderful woman who pulled out all the stops for the atrocious treatment of learning disabled in the west, when now, she is receiving pretty similar and more and more, and watching the same happen her twin, myself.
it is no good plastering my cute wee chihauhuas and self on the front of HealthPlus Irish times, 2010, documenting my story for the curiosity of it all and then abandon lock, stock and barrel, the three day wonder.
and then the bit of curious floss dragged in to the bosom of a caring professional because of curiosity and then told 'ah but you are a spirited lass.' but what next, 'get back to where you belong.'
and soon it will be to Holy Ireland of the dreadful bloody fiscal fiasco who will carve our graves with enthusiasm as they embrace the words of my taoiseach who states 'we are a modern society.' he that says he isn't tolerating what the church has done to its children and vulnerable adults.
well you did, over in the West, remember, and someone found you out, that of the HSE, remember and then remember how you embraced through tv documentaries and Irish Times articles, well no you don't.
cos we are still here, but not the way you think, we are here, jerking and jigging and hospital hopping and chaotic crisis riddled individuals, left in the melee of Holy Ireland and modern etc.
well we are here,
if you read this and care enough to give us your last rolo, as in - DO NOT STAND BY AND LET RARE AND SPIRITED AND WORTHY INDIVIDUALS DIE IN A COUNTRY THAT HAS NEGLECTED US.
Dr. Raging Wheels is my twin. You will get to know her too - if either of us remain alive in a health system that is simply euthanizing the useless, aka the disabled.
My twin and i - for instance.
We reel from one crisis to another.
we live but a quarter of a mile from each other or less and we cannot even get to each other easily.
we are promised electric wheelchairs which we have tried out.
like carrots teasingly tempting us to sit, we then see em packed away in the white van that brought them to our doors, we now wait on a list.
and so it is with most things.
we reek with conditions, as each of our body parts crumbles due to an invasive virus Rubella which my mum caught when expecting us.
we have not hit 60yrs but I bettya Ireland is sure we wont.
We dont have the wheelchairs but what else do we not have?
we do not have CARE, period.
Little or none and what there is is chaotic, unpredictable and predictably AWFUL.
what is left at 'fallout' end is two exhausted women shocked to the core that any european nation could do this.
Most people in this society rely heavily on the extended family - what if there isnt one, or one that can be or is willing to be caring or even recognise our distress, what then in holy ireland?
if we do not have this extended family we are finally in the custody of the state, which is bankrupt.
Neurology for instance, has cover the lowest in europe.
and my twin and i do not even register on the richter scale even though we are supposedly being cared for in this system.
we have not been jotted or noted in our chart for two full years, that is, no note has been made of us being in that system and yet we have and yet we see and dont see a result.
we see the consultant on no set regular expected consult, we have to hope and wait, and wait and wait that someday it will be decided for us to be seen.
we also do not even know what we have, for the jury is out on that...well...to us it as no formal diagnosis has been made, again, nothing has been formally documented-nothing being written in our notes.
if we ask, we are considered pesky and persistent and irritants.
We do not easily slot into Post-polio, dystonia, parkinson's, ms or als. we have some and not the other and none of them but all of them, whatever.
we are dystonic and parki and have a post rubella.
but what is the definitive diagnosis and how are we to be cared for with it?
does one of the twin's come off her parkinson's meds and why is the other hardly been medically controlled of her jigs jerks and dystonia.
we get the botox jab in my neck and twins foot/ankle but is that dystonia due to dystonia or parkinson's.
we both tested positive for parkinson's on a DAT scan which is considered 97/% accurate.
we don't get considered as having it and half the jury is hung or out and we are slashed and drawn in confusion and dispair.
what about the other...the endo who discharged one back to gp, that is the senior reg discharged the twin without even consulting the professor of neurology who referred her to him.
that is 'out on your ear, mate,' without further ado.
that is, us being sent to the consultant of endocrinology, (we haven't seen though, due to the rarity of the situation), sent for the expert opinion but in the opinion of the registrar, not yet a consultant one twin has been shifted back to sender.
Deformed feet with special shoes, well yes, but two years ago funding dried up for them and so i hobble, now one foot has collapsed and i am working with fallen bones. I also have a short leg but as the shoes went so did the lift, that is all of two years ago.
what about physio, well, yes, i get four blasts every six months.
that is my friends, about half hour at most working on generalised dystonia and then after two hours every six months i am told to get on with it.
any expert nurses around for the following - ceoliac, crohns, sjogrens, raynauds or arthritis?
no, you join these sort of support groups for the support grouppie advice.
that is the sjogrens associations, the raynauds etc.
these are non medical conglomerations of well meaning and charitable organizations who do trojan work, but they cannot interfere with the medical supervision of the various conditions they are trying to support.
we don't have the medical supervision and we have all of these, well i do anyway!
you can get all the advice in hell on these but you need to have the provision, advice without such is useless.
how about deafness and blindness - well none of that is much public health concerned as the public health hearing aids are just about useless for those of us who are touching on only having 35%.
we have a shortage of just about everything.
and just about everything my twin and i have with just about nothing by way of care, family, support, apparatus, funding and access to transport or other.
We will die.
I personally who had the misfortune to be in the psychiatric system will surely die, as i am shunted to the virtual wards as soon as i arrive in A"E anyway. that is ED to a lot of countries, but here in Ireland these are documented to be seriously dangerous for your health and fatal for psychiatric patients, known to be.
without family to watch over you, no one can call a halt to maladministration of health care for the least able.
how can one person with parkinson's disease who is recovering from radiotherapy help the other who has generalized dystonia once in the psych system who ends in A'E/ED with a crohns blockage, both deaf, both women, both in wheelchairs, both clapped out help one from dying of crohns blockage/peritinitus? well, we lost one sod in southern ireland whom they left too long and who died, sure i am surely going to be next as he was abled bodied and had two small chizlers, whom he left behind.
we are forgotten in the melee.
who do we want to hear this?
well who will hear?
and who will cry out and not allow Ann and Margaret, the terrible twins to suffer this indignity at the age of only 57yrs.
it is no good making documentaries on a wonderful woman who pulled out all the stops for the atrocious treatment of learning disabled in the west, when now, she is receiving pretty similar and more and more, and watching the same happen her twin, myself.
it is no good plastering my cute wee chihauhuas and self on the front of HealthPlus Irish times, 2010, documenting my story for the curiosity of it all and then abandon lock, stock and barrel, the three day wonder.
and then the bit of curious floss dragged in to the bosom of a caring professional because of curiosity and then told 'ah but you are a spirited lass.' but what next, 'get back to where you belong.'
and soon it will be to Holy Ireland of the dreadful bloody fiscal fiasco who will carve our graves with enthusiasm as they embrace the words of my taoiseach who states 'we are a modern society.' he that says he isn't tolerating what the church has done to its children and vulnerable adults.
well you did, over in the West, remember, and someone found you out, that of the HSE, remember and then remember how you embraced through tv documentaries and Irish Times articles, well no you don't.
cos we are still here, but not the way you think, we are here, jerking and jigging and hospital hopping and chaotic crisis riddled individuals, left in the melee of Holy Ireland and modern etc.
well we are here,
if you read this and care enough to give us your last rolo, as in - DO NOT STAND BY AND LET RARE AND SPIRITED AND WORTHY INDIVIDUALS DIE IN A COUNTRY THAT HAS NEGLECTED US.
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