Tuesday, November 18, 2014

information station ---wagon!

more information on the wheelchair situation here.
there isn't much to report.
still not a decent wheelchair in sight.

a phone call came to ask me did i want a repair man to come and look at the new wheelchair, that is for the one that ran away.

well, i don't think it needs repairs.
there isn't anything wrong with it, because its been built to do little and when it was doing little it was fine - that is, it didn't run no place on the flat floor of a hospital recently.
it didn't run no place either when i had to use it in the kitchen.

it hasn't run away since, but i have been afraid to use it for more than its able, or tax it more than one should.
like a sick child or adult, you do not strain the item.
well my friends, that's a wheelchair we are talking about.
the stress and strain is enormous for the human!

the OT came today...the local one.
the nurse came to day, the local one.

the OT asked again, 'will i send someone to look at it?' and 'tell me what happened'
well i told them already what happened.
i told them again!  its a crap wheelchair.

the nurse said it best to get it checked out we do not want an accident!
that is a tad bit rich considering the HSE gave me a wheelchair that lost a wheel causing me and whats left bolt  into a wall in July 2013.
so they are worried about accidents!

here is another.  YOu may like this as well...

'i am worried about all the falls you are having.'
said the nice nurse (she is nice).
'Yes, nurse i am too'.
but i tell you for sure most of the falls i am having is when i am too tired and i shouldn't be walking.
i should be in a decent wheelchair.
a proper one.

'seriously, i am worried about all the falls you are having.'
well i am serious too.

i then told her about a possible 'site accident'
we have had water coming down in buckets, (god  bottle it you say), and i had to avoid a mighty big puddle down by the harbour.
i had to go up on a grass prom and if the wheelchair didn't make it i was out of it and crack onto pavement, concrete like.

I have EXPLAINED all this before.

the bloody wheelchair given to me is the cheapest you can get, its a stock chair and neither does it 'fit' for a woman of 5.6.2in, yep measured to that height today, i have lost half an inch friends!  its far too small for a large lady.

if you read on any forum about wheelchairs, don't go there, do not go and buy the Energi cos mate, it isnt suitable for any other surfaces than a nursing home, they say.
the way the HSE are treating me i wont be in a nursing home but a mental asylum.

i explained what happened two weeks ago with the cheap wheelchair.
i explained why.
there are a few grades of wheelchair and it runs like this (excuse the pun).

Indoor chair - this is for indoors ONLY (the one i have).
outdoor chair - this is for outdoors ONLY.
indoor/outdoor chair, used indoor but with capabilities to be used outdoors.
Outdoor/indoor - outdoor with capabilities for indoor use.

now you cannot use a chair that is ONLY for indoors - outdoors.
they are not built for it.
they are light (no suspension for the bad roads) they do not have balast, so they can run away with you and tip to the side with you in it, (i do not wear a crash helmet.)

my twin sister and i are still able to go out.
yes, we do not hibernate, we do not stay behind closed doors, we are not hermits or reclusive.
we go OUT, a lot, because we need to and like to.
we need OUTDOOR chairs.

and far more besides.
(but thats all another days story).

the main one being, i have still this crap wheelchair.
and i call this torture and it has to be regarded as a form of torture under the 'human rights' legislation.

the HSE is driving us nuts, and causing us pain and driving us down paths and into orange leaves, and muck.  (and walls).

oh by the way, the top brass (our government departments) who inquire after i weep down the phone to them are told certain things.

the twins have had expert seating and wheelchair assessments and they have the suitable wheelchair for their needs.
yes, very expert to do this assessment with not a wheelchair in sight and also the most scientific and sophisticated measurement taken being having a scarf rolled up and shoved under my bottom to shift me from keeling to the left to more or less straight, until i get tired of course and i will keel to the left.
that will not take long.

they are told these assessments were professional yet they have been done with no reference to medical consultants analysis of what is wrong with us, at all.

a year ago my twin took a leap of faith.
she no longer has Parkinson's disease, so the HSE say in this expert seating/wheelchair assessment, you know what then,  she has prayed and a miracle occurred, because suddenly my twin has gone from having parkinson's to being pre-parkinsons disease, now that is a miracle by any stretch of the imagination.

here is another great gem of an assessment.
'she claims she is deaf and uses hearing aids.  there was no evidence of hearing impairment'
oooh now thats a great assessment.

we are back from a top UK hospital and we were both tested again by a consultant there.
a proper consultant.
we are both Profoundly deaf in one ear and severely deafened in the other, and the consultant was aghast to see that our audiogram was identical.
she has never come across this before.

so margaret my twin has effectively seen either a ghost, a saint, a witch or nada cos she no longer has deafness of any kind and she no longer has parkinson's disease of any kind.
Funnily when it suited them a reason given to why i needed a 'wetroom' and the twin didnt was because she has parkinsons disease and i have a neurodegenerative disorder.'  well i best inform the Health service, that parkinsons disease is a neurodegenerative disorder!

what else...
well this expert assessment forgot, yes forgot to tick some very relevant boxes on the questionaire.
this is a mystery not a miracle.
because if answered they would have given evidence of the whys and wherefores, the better wheelchairs are needed.

so this expert seating/wheelchair assessment has been the response of the HSE to all enquiries by the Department of Health.

economical with the truth?  yes, not pre-nothing, just post parkinson's disease diagnosis.

i could write a book on all this.

so they tell me today they want to send a repair man and you better have it done cos we 'are worried'
well, you should be on that score for sure, you should be worried.

some bright spark told me i shouldn't go out in it if it does this, run away on you.
well why is it that i cannot go out in the community like everyone else?
this bright spark said, you know you have a disability you just cannot use this machine in those places if its dangerous.
hey, its not them places that are dangerous, its the bloody wheelchair.
people almost climb mountains in wheelchairs.
if i cannot use a simple path in a wheelchair, jez what can i do - become that famous hermit and recluse when i want to be OUT there where everyone dares to go!

'Ann' says the nurse,  'I will come back next week and discuss the falling because you know i AM worried about this.'
'NURSE!  so am I!  can you give me a wheelchair?'
i am on the left with slippers, note the way i do lean to the left, note how my legs are
slipping away and note the size of my legs.
you have to if you are using/chosing a powered chair.

evidence has it when you become too tired and walk too much when diseased what happens - you fall down.
crack i have hit the deck down.

that is what happens, its not rocket science, its even more scientific than shoving a rolled up sausage under the bottom of a sick lady.

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