Dear Greystoners, As you know Ann and myself are new here, well, 3 years approx. Also you know we are sick/disabled though I know some have found it difficult to understand how one day we seem well and walking and another day are in wheelchairs. The days we walk land us in wheelchairs the next day or even hours later! So the balance is delicate. We have a VERY VERY rare disease. we came home yesterday from Newcastle UK where the Irish government E112 scheme sent us to see top specialists in Newcastle Royal Infirmary as there are no specialists here in Ireland in our disease! we spent a week there undergoing some gruelling tests. We are a little bit closer to understanding what is happening. After horrible tests in Newcastle it is found we apparently are not able to produce energy to enable organs to function and this is the case even at rest. hence muscle myopathy, (muscle wasting), breathing difficulties, parkinsonism, Dystonia, swallowing difficulties and HUGE fatigue. We are struggling to get the HSE in Co Wicklow to provide us with suitable powered wheelchairs and we genuinely CANNOT afford them. The HSE say theyve given us suitable ones. You may have seen news of this in the Wicklow Times. Ann and I need to get powered wheelchairs that have full body support. headrest, tilt facilities and good suspension. This is because when we are without energy we cannot hold our trunk and head upright. its difficult to explain a disease no-one understands, when its not commonly known about and even more difficult when we DO walk, but with difficulty. But believe me, walking is costly on this disease process. The two consultants we saw in the UK say we are showing all sorts of defects on testing and as yet there is not even a NAME for the disease. Its not usual to have Parkinsonism, muscle myopathy & dystonia ALL together. All we know at present is; its RARE, degenerative, Genetic, and possibly within a RARE group of muscular dystrophies of late onset, or part of a group of mitochondrial diseases. however we were also told we could possibly be showing a genetic sub-set of disease processes never before seen! I was aghast. NOOooooo I said, he said Oh yes, we had one man in here last week and he is the only ONE with his set of defects in the world.. we just want you to know that Co Wicklow HSE services are truly making us suffer even more. I dont post this lightly. we should of course keep some things private but this is what sick/disabled people do when at the end of their rope. The consultant said shed willingly talk to the HSE officials and explain the tests results, but the Head of disability services (New person) said she wont take the call! tell me what do you do with that? tonight I just feel utterly despairing of the HSE. Vardaker says hes too busy to see us! sorry folks just reaching out for support & TLC...
Posted on: Thu, 18 Dec 2014 19:05:57 +0000
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