Thursday, November 6, 2014

the kennedy twins petition for far better wheelchairs!

my twin sister created this petition page, i am all for it, indeed we have had a dreadful struggle and we are coming to the end of our rope really.

at Dail Eireann yesterday
twin guest speaker of Dr. Rosie Gowran presenting a talk to some TD's in government buildings on the provision of powered wheelchairs in ireland and the effect the poorly provided one does to a body of a person.  Margaret, here pictured left, spoke for the older person, as younger people spoke too of how many times they had to return to the HSE with the poorly considered wheelchair given to them. 
we have a crisis situation.

pain is the main factor in all of this, pain.
we are elders, 62 on the 25th november and although many in our health system consider the powered chair we are requesting as a sort of 'high end chair' well it is in many respects but we have a multi-systemic disease.
its a muscle wasting neurodegenerative disease, coupled with some usual aging processes and arthritis along with a weak back structure and muscles to hold our bodies up plus of course, pain pain and more pain

its not ideal to be in a chair for a day and be doubled up at night in agony, this isn't what a chair should do to you but this can happen.
i was recently in it for half a day and it had the same effect.
also mito disease is basically an energy disease so when the body fails to convert food and liquid to energy we are exhausted all the time, like trying to run a car when the batteries are flat, well our body batteries are dying.
its hell too at times to sit in this 45 degree angle because the muscles tire too fast and so if you want to sustain in a chair say on a train or concert or at coffee with a friend what we need to help us stay upright is a tilt facility which enables the chair to tilt back thus making our body rest back abit and release the strain on the muscles down our spine which is finding it difficult to hold us up!
ditto our head too becomes heavy when very tired, asking for a head rest facility is not a fashion item, the head is the heaviest part of the human body, what do you do with it, when the neck and spinal muscles are in agony from the strain of over work?

i cannot endure more of the same day in day out, nor can the sister.

why would someone even do a campaign such of this if it wasn't for one reason only - we are at the end of our rope.

consider this 'high end' powered wheelchair bit, there is no such thing!
powered chairs are purpose built to suit an individual and are used now for many many conditions, not only spinal injuries or MS or other.
considering again we have a neuromuscular degenerative disorder where there is no treatment and no cure, surely to deny us a proper wheelchair which will bring some comfort and release from added pain is what health care is about?
this type of chair is used by mitochondrial disease patients worldwide, from USA and finland to UK.
the problem being the cost in Ireland is higher due to our limited population and usage base but the same chair in china is a fraction of the cost, the same chair in the USA is also far less than here and also the UK is less but Ireland, no, very high because of importation costs and also low usage base and population of the disabled groups.

effectively we seem to be in the wrong country, at the wrong time and in the wrong time of our history.
so we petition because we believe its not impossible nor an obsurdity, its actually cost effective, from a health care point of view, its cost effective.
also its recognised by the WHO that wheelchairs are part of who a disabled person is, its an extension to provide us with the equality that others have due to full power and so we use the invention of power from another source, rather than failing bodies, we as scientific technicians didn't invent the wheelchair for nothing and didn't decide on making it a luxury item, but a proper adequate and functional item for each individual need.

we are not 'off the peg' people we come in all shapes and sizes with all manner of disability and diseases
i humbly ask all who are in favour put up your hand and place that finger on the 'sign here' note, and after that share our petition...please!
please sign....because we are effectively - at the end of our rope.....

No comments: