Achievement gave me a new way of dealing with disease and it meant ‘escape routes.’
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| chucked with no neurological care after being to centres of excellence abroad as a rare diseases patient - Ireland has reframed me as not worthy of either diagnosis, care, treatment - basically sent home to die |
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| fighting a medical model of tyranny of the person is a tough road, my aim is to meet the beauty at its end |
My ability to stay calm is not one of my enduring features.
Calmness is a pre-requisite for my wellbeing, noted as being an essential ingredient in any way I chose to live. I needed this calm.
I now was in new territory becoming increasingly alarmed.
I was in this territory alone, with no supports to counter face this.
I had transitioned once more from normality to completely abnormal ways forced upon me in an abnormal fashion because I was catapulted into a system of powerful consultants and I was not going to be able to manage any of this.
I left the consultant who labeled me as ‘wanting Parkinson’s Disease’.
I did the right thing, no one would stay with such a slur or abuse of language or insinuation to a person who is honorable and kind and could not cope with such spiteful remarks.
Walking away I felt I would get the right consultant next time.
I chose another hospital. I chose to trust again.
My first visit was made with the support of my identical twin sister.
Oddly, the consultant was more enthusiastic about requesting some paintings from me for his bare walls once he heard my ‘occupation.’
Alas, he didn’t suffer Abstract Art well, so it looked like he was not going to get anything even if offered. I do not do pretty landscapes.
He was a disappointed man.
Soon after another visit was made and a test requested by this consultant’s registrar for Huntingtons Chorea was put to me.
This condition would be my death sentence, if positive.
You gradually develop towards dementia and full incapacity.
I consented to be tested.
Learning years later having this test you must be in counseling and be genetically counseled in order to prepare for the outcomes of this because of its very poor prognosis.
I wasn’t.
I waited and nothing was forthcoming.
I continually rang the nurse, continually rang the department but nothing further was mentioned of this test once the blood had been drawn.
I was sent to the psychiatrist within the hospital.
These notes are embedded in this hospital file and are shocking as some kind of construct was woven around the organic process of a slowly forming atrophy/dementia type condition.
Given this was in 2009 and I still remain with full capacity, the slowly forming progressive brain disease never happened. We are in 2018.
Further inquiry through FOI in 2018 found that a recent visit to this hospital and another consultant saw him extract the psychiatric reporting of that time, 2009 and pin it all on the blood results he had performed in 2016.
He advised me to go home and enjoy what was left of my life.
I have to ask many questions here as my brain goes into a spin of intrigue and confusion (not from dementia I hasten to add)!
A signature was being given to my case. I was being framed.
This isn’t TV entertainment. This is Irish medicine at its worst.
It certainly, to me, sounded alarm bells within and fully confirmed my suspicion of their intent against me a very sick individual.
Any way you look at neurology here and my case you see a construct forming.
Within the space of two years at this hospital no tests were ever done to determine why I had a movement disorder, muscle wasting and a mixed connective tissue disease.
There appeared no interest and no further investigations were ever done. We did have of course the psychiatric consultants ‘stitch’ me to the tapestry with lack of personal consent by this patient to be labeled the way she has been which is untrue.
In brilliant academic language I was in their words just a woman with a progressive organic type of brain degeneration and a personality reflecting this organic degeneration.
The book was effectively closed by consultant psychiatrists.’
No further inquiry made on Neurology. It did not matter that one of these professionals I never got to meet!
Whatever happened the blood tests for Huntington’s Chorea you may ask?
There is considerable complexity in my personal understanding of this.
It was never done.
It is and remains as simple as that.
It was sent to the The Genetics Department of a major hospital. It was found to have incorrect labelling and this was claimed by the hospital as ‘human error.’
We can all fully accept human error.
I cannot accept what happened next.
Genetics were informed that I had been discharged, the bloods were taken by a different team and they had no idea where the doctor was who took the bloods. (2007)
This is not true.
I remained under the care of the same neurology team at this hospital for a further two years and was then discharged.
I threw what is eupanistically called ‘a wobbler.’
In the presence of a supporter who came with me to try and extract the test results from this team, I was not being told and I lost the preverbial plot.
I was discharged due to the atrocious abusive manner in which I dealt with the staff on that day.
Looking back I see this an entirely different way. To struggle for two years in effective communication through the normalized channels of contacting by phone and engaging in the clinic on ‘where is the genetic test results?’ for Huntington’s chorea’ being met with a file never opened is testament to how I tried to engage.
If as above, the files contained the psychiatric reports of confirmation that I was going through an organic brain, progressive disease leading to a demented state then no file would be opened thereafter.
Of this condition, i wasn't informed of either, which is odd because i was the patient. Who is this very disease discription actually for, if not for the patient herself?
But witness to the fact recently with a mighty chuckle to all of this my GP tried to contain herself from laughing.
“You have not got dementia!’ (ten years later)!
“No,” I laugh back “I do not”
Within a year my dear mother on developing dementia, was feeding teddy bears.
I continue to feed myself, my sister, creatively.
I feed my van petrol and I can drive to Athlone and further and can manage money (what’s left of it).
The astonishing findings on this file, is enough to rocket any sane individual into a seething mass of fury, but alas although I see it now and it can all be discounted – we live in Ireland.
A consultant running through these very inaccurate files, extracting physically data dating from 2009, (out of date data) and pinning it to the collar of his recent blood reports is shocking in extreme, occurring in 2016 and I have received no further help from him or his team.
The suggestion to go home and ‘enjoy what is left to me.’ Seems now ‘staple medication’ and cheap.
Its cheap to scapegoat patients who are considered very rare and complex in this manner.
Labelling is never good, but this is at the extreme end of utterly atrocious.
Extremes exist and difference does exists.
When differences of opinion and fabrication occurs the patient must stand up and call it, name it as it is.
We have here a case of “the emperor is wearing no clothes.”
This well known fable from a different time and era attests to the fact that Asperger Syndrome was alive and well in that kingdom too.
Bluntly put this little child of observation squarely claimed a case of fabrication, denuding of a patient to a state of vulnerability and wrongful diagnosis is medical negligence, a crime against the hypocratic oath and a denial of duty of care.
So says this lady delving into the intriguing world of semantics, power, and uncredible diagnostics spheres of Irish consultant disciplines.
Two or three major medical trips abroad to centres of excellence tell a very different story and in a very different way with a very different emphasis on the physical decline alone. Nothing further needs to be looked at.
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| London 2016 - visit to see consultants inform us they consider we have a muscle wasting disease and more tests need to be done - to date they have not - they, instead (in Ireland) both have a different way to care for us than that of the UK, it is called 'go home and die.' |
When an eminent CEO tells me or inquires of me
“do you realize that the Irish Consultants have a different view on how to care for you than the UK consultants.”
I instantly say back, I am fully aware of the Irish ‘take’ on all of this.
“go home and die.” is their wish of myself and my twin sister.
It takes into account no consideration of eminent consultants at the cutting end of ground breaking science and research and at the forefront of managing disease complexities, to that of an Irish setting where consultants are struggling to keep up with its clients on a basis of even managing at all, anything in fact.
When a patient receives a neurology appointment in 2016 for 2024 as a first appointment you begin to see where ‘flushing out’ such patients as my twin and I as a viable way of getting patients lost from the system easily to cather for ‘the real ones.’
The UK see it all differently.
We are the REAL ones.
They may have over 58 million citizens to deal with, but with limited means and time they dealt with us in an exemplary fashion. Detailing our case as vary rare and complex cuts no ice whatsoever once you return to Irish soil.
They instantly revert to the lunacy of us and our case and I call it lunacy of Irish medicine to discount a far superior view and place us in a nomads land of complete and utter ‘entrapment.’
We have a power base willing and able to imprison us in such a way that we are powerless to effect meaningful change in any shape or form.
The construct has been established, I am a person biodegrading like washing power into nothing therefore go home and die.
This isn’t the case of solidness and soundness of mind, belief, my wishes and that of superior medical resources.
The different way of treating us and caring for us is not our wish.
We have not agreed to be sent home to die and be left to die.
This is the meaning of power.
It is degrading to label a patient forever in a vice of misuse of both disciplines and expertise.
Uk determined many things and discounted a lot including issues around my frontal lobe atrophy. This being the brain problem that got rocketed into a mass of washing up powder, by the shrinks here.
When considering this brain atrophy it is minimal they claim.
It has caused no pathogenic effect and I am not suffering dementia or nowhere near it.
I have not got a pathogenic type organic progressive brain issue and the atrophy most likely was there since birth and is not going away but likely not going to get worse, beside its not that BAD!
Its only minimally worse than normal and it has not changed over decades.
We still cannot put to bed the theory of the washing up biodegradable brain matter.
We cannot bring back a fact the brain is not going jelly like and I am still sick from a disease no one here is bothering to investigate.
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| is this an image of a demented woman (2017) absorbing the essence of the scenery and taking professional photographic shots? when Ireland refuses to treat me, they allow me intellectually know degrading in body without even knowing why is a breach of my fundamental rights to both a diagnosis and to care in the European context of holistic medical input -since 2015 i have had NO medical care. Those who use wheelchairs can rise out of them, 80% can walk, i have a very strange disease type, i can walk for short periods, but mostly outdoors i am in a wheelchair. (you constantly have to explain) |
We say its not all that should happen.
I claim its gross negligence and it is prejudicial against us.
