Saturday, November 8, 2014

this is by way of correction of the last post up my friends.
The petition is really important and we could use your help. Click here to find out more and sign:

i hope now you can get into this link, but of course i will try and make sure you do!
Tanja was provided with her great wheelchair from her country Finland, she too has mitochondrial disease like us twins
you can if all else fails by 'selecting' the URL and copy and paste to your drive and then click, then you are IN, for us to WIN!
ah, so to speak.
We have a rare neuro-degenerative muscle wasting condition known as Mitochondrial disease, we are older too so experiencing the age related conditions as well.

will i remind you all what this is about?
well, we have been given dreadful wheelchairs yes, they are powered chairs.
mine is new but basic, with no suspension whatsoever, no back support, no side support, no leg support meaning i cannot tilt the leg rests which i always had to do for one leg when using the manual.
there is  no head rest when jaded and you cannot sit at the 45 degree angle any longer and no tilt facility when your body begins to slump and bend forward which happens rapidly when sitting down.  remember our disease is primarily an energy disease and so when our cells start to fail so too does the capacity to use our bodies normally, eg failing to hold itself up when tired and weak by muscle weakness.
i cannot sustain this position for very long.
my chair is too small and my leg rests have been brought up as if i had shorter legs, so as to make sure i don't slip off the chair altogether.
it has a rock hard cushion and i have a damaged left hip.
all in all a brutal ride and a brutal thing.  i have a weaker left side so i slump over always to the left with no support down that side whatsoever
not to mention that it is an indoor chair only meant for very smooth surfaces but i use it mostly for outdoors and that's the main real problem, it was never designed to be used on our paths and roads in a small village!

my twins is still a second hand, her batteries are down and oil is leaking, in the meantime she has been told not to go up any hills!  because one battery is weaker than the other, the whole chair 'fishtails' this means that going down a small incline or even straight along it can veer to one side alarmingly and once  when my last one broke down i borrowed it and went to the nearest town.
on my return i told my twin it was lethal and there was going to be an accident in it as sure as my name was 'screaming Ann!'
it just couldn't be well controlled to drive in a straight line at all.
but apart from that, the twin has a very bad active arthritic back where she has crumbling discs at the base of her spine,
i have these crumbling discs at my neck.

you bounce alarmingly along in these 'gadgets' from hell.
your head shakes and i have menieres disease so bells ring after a trip out, my head hears music and bubblings and i am dizzy and in pain, its wojus absolutely dreadful.

my twin too has landed in hospital on gas because she was in so much pain after a trip out her back seized up, she was put on morphine by injection and now both of us are on morphine patches for pain relief, and i am on another pain med three times a day.

if anyone thinks that this equates to giving a health service par excellence then i do not.
we have all these reports on making the service better and being patient centred and listening and caring and 'oh we are just so so wonderful to our poor sick.'
the bottom line being, they don't really care that much at all.

the kitty is not that large and we all know that everyone is struggling to a huge degree here in Ireland.
signs of the times being we are in a rage right now for it cannot be sustained that poverty levels rise and all our young are leaving and there are so many old people who again no one seems to have much time for.

something has to be done in our little country, but personally i can only speak for two here, the effects on us, as we prepare to meet our end.

why are we in these wheelchairs in the first place.
margaret is discussing with
tanja her
great powered chair and the
reasons why she has it..
exactly the same as OUR
well because we have a neurodegenerative disorder, its progressive and there is no cure and no treatment, therefore providing palliative care for us means lessen the pain and give us a good quality of life as we degenerate, i would not consider that asking for much.
we as twins are not high fliers, excuse the pun, we have a low key life and yet we want to do certain things, a concert maybe or the local wee theatre, but all we do is have this battle for mobility.
let me remind my readers that due to my last wheelchair dying at the beginning of the summer i did not get out for summer events, i couldn't.

effectively it is against the WHO guidelines i was entrapped in my own home, unable to move.
it isn't legal.

(in the image above my twin is standing, yes she can and so can Tanja, but we have to conserve ENERGY and mostly when out we negotiate our way round using the powered chairs.  All medical consultants say to mito patients you must keep active and walk to build up the body and keep it going, so mito patients do walk, in the main they walk but need these chairs so badly due to disease in our batteries, these chairs act in reserve of a flat!)

all have a right to mobilize in the community and use the community well.
so while others took the opportunity to enjoy the fine weather, many times my twin and i couldn't move far away from base at all.
anyway no more drivel now, lets show you some images of a proper wheelchair for our condition, the condition being mitochondrial disease.
and lets put up the URL again and see if this time you can click and then sign and most importantly, SHARE on to all you know.
Tanja has bent forward a bit, to demonstrate the
type of back rest and moulding
on her powered chair which gives her that
comfort she needs because of her condition -
mitochondrial disease - the same as us twins!
 we celebrate hitting our 62nd birthday on the 25th of this month, November, i want as my birthday present a decent wheelchair from the HSE that is the Health service executive.
it would be the best ever birthday present.The petition is really important and we could use your help. Click here to find out more and sign:

The petition is really important and could use our help. Click here to find out more and sign:

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