The story of ann
we are identical twins living in the Republic of Ireland. We are currently being physically assessed at the Rare disease unit and unit for mitochondrial disease in the UK, at Newcastle under Prof. Chinnery. this has been a long journey of almost ten years of discovery to get this far.
it is felt we may have mitochondrial disease but now are told it could be very rare indeed, so rare that they are having difficulty matching our complex diseases with any one that is known presently.
we have been told we can be that rare! i never imagined this would happen.
we know for sure this is a progressive neuromuscular disorder, with parkinsonism, dystonia, ataxia and muscle wasting, it also has an autonomic disease component and a metabolic rate which is going far too fast but they have no idea why.
Living in Ireland is both good and very very bad.
we have had a difficult few years of massive austerity measures and alot for those who are sick, ill and disabled have been cut to the bone.
we, as 62 years of age for instance, struggle to have proper, safe and supportive powered wheelchairs, we have struggled to have these provided under our public health system for the past three and a half years, to no good effect have our protests being. we are in pain and the wheelchairs we have now are adding to this pain. they are stock chairs with no suspension coils to cushion very poor spinal columns and we are very alone too without any psychological support and without family at all.
we call this ‘the blind leading the blind’ where one twin is trying to help the other motivate so that we can scratch a bit of happiness from the mire of pain and suffering we have endured all this time.
one difficulty we do have is, we look reasonably ok, and therefore we are not believed much.
this i thjink is a worldwide problem for those with invisible illnesses, diseases and disability.
the other matter too is there is a tide of change in all disability sectors across the world, whereby the general consensis being that we as the sick and disabled of each country have actually been the cause of the economic downturn for the country we live in!
astonishingly we feel this, and therefore when cuts are made to bring countries into an economic viable stance, the cuts hurt those who cannot afford to be touched. we say as twins,we have skills to offer. my twin is an internationally well known public speaker and social work trainer and i had once had an artist studio and worked with the elderly after doing a post grad in ‘arts & empowerment’ and also through ‘Irish therapy dogs’ now, for sure our skills cannot be tapped if we are stuck in our homes in a village setting and that is what is happening right now.
i have had a lot of injuries and falls and i am the only driver of an adapted van which is increasingly becoming tougher, it makes sense to provide us with the wheelchairs of our choice, it would mean my twin could when feel reasonable well attend the university, maybe give talks and lectures and i then in turn can attend to the elderly who have their own needs and problems.
we want as well, to enjoy being within community and part of this.
but its not as simple now and therefore accommodation has to be made in order for us to do this.
we like people not protesting about the wrongs of a country in terms of health care provision, many countries give a disabled person no choice but to be come professional patients, yet we do have skills to offer.
we love life but in recent years have felt incredibly low and ill. it just takes its toll all this begging for help when we need it most.
we are looking forward to rare diseases day coming shortly and we shall participate in it and share with the community all the trials and the joys and the pain, for it is there we know of this.
happy ‘rare diseases day’ from Ireland, we wish you all fair sailing.