Mi è stata chiesta una testimonianza, e io ho accettato volentieri, anche se per la verità non amo troppo the word witness. What is telling is the fact that a little known disease, or tell us what happens when you go through, it is important, but even more importantly, help us all understand what we can do as a community, to allow patients and families live in dignity, living with the disease and despite the disease. Amyotrophic lateral sclerosis is a disease that dare to lift almost everything completely paralyzes you, you can not move neither arms nor legs, nor speak, nor eat, and eventually not even breathe. Helplessly day after day and more or less rapidly, your body relaxes, che non ti risponde più. Le uniche cose che di solito lascia intatti sono i movimenti degli occhi e la mente, che resta completamente lucida.
Quando si riceve una diagnosi come questa ci si trova di fronte, prima o poi, ad un bivio e si deve scegliere: decidere che quella non è più vita, rifiutare l’intervento per passare alla respirazione artificiale e lasciarsi morire, oppure decidere di continuare a vivere. Non c’è alternativa e la differenza, a quel punto, la fanno alcuni aspetti molto intimi, come il proprio attaccamento alla vita, l’amore dei propri cari, l’affetto degli amici, ma anche le condizioni materiali che possono rendere sopportabile l’idea di affrontare un’esperienza come questa: I mean if you have all the social supports and health are essential and that did not have. In fact, today, in the almost total absence of home care services, the full weight of care, day and night, lies entirely on the family. Wives, husbands, children, are forced to leave their jobs, not to leave the house anymore, not knowing how to deal with the expense and having to bear the responsibility of nursing operations that save lives in times of crisis.
What few know is that today, in our country, 8 out of 10 patients with ALS decide to die out. That's right: the 1500 people each year get sick, well is allowed to die without going 1000-1200 alla ventilazione artificiale. E proprio l’abbandono da parte delle istituzioni è la prima causa di questa eutanasia silenziosa: accanto alla prospettiva di una malattia catastrofica, vedere i propri cari consumarsi accanto a sé, schiacciati da un carico assistenziale 24 ore su 24, spinge molti, già travolti dalla diagnosi, alla rinuncia.
E poi altri ancora, una minoranza, ma non per questo meno degna di attenzione, rinunciano sapendo che, una volta fatta, la scelta non ò più revocabile. Perché infatti prima si ha il diritto di rifiutare il passaggio alla respirazione artificiale, ma poi, una volta avviata, questa, così come l’alimentazione e l’idratazione forzate, non potrà mai più be suspended. The absence of a law on end of life, respecting the self-determination of the person is the other terrible problem that presents itself to those who become ill with ALS.
Knowing and understanding these issues is important, because the indifference that the company reserves the right, through its institutions, the difficulties of the weakest, is the cause of suffering that go beyond the ones already terrible disease. And so it is important that the citizens' solidarity can be expressed with different forms and more aware that go beyond mere charity, which is praiseworthy if it is complementary, not replacement. The charity is not enough. And in the long run is too little respect for the dignity of persons, because the equal dignity requires that a law is respected, the right to health, not to be treated like you need to turn to aid charities. The same must be said, unfortunately, also with regard to research, which goes too slowly: this year are already at least four trials "at the bedside" that were supposed to leave, and are still, and not only the chronic shortage of funds but also because of the lack of transparency in the funding criteria, which do not always seem to reward the actual quality of the projects.
Here is for all these reasons, patients and their families, we down to Rome, just a month ago to start a permanent garrison put on the agenda the approval of concrete support measures, beginning with the possibility of relying on the support of family carers experienced, trained and qualified with special training courses. And this morning, in Cagliari, the Sardinian patients, with stretchers and respirators, are forced to do the same, to get what the Regional Board has discussed and approved a year ago and a year is locked in a drawer.
We know that the 5000 patients with ALS are only part of the non-dependent people in Italy, the Association Greta and the cloud is responsible for head injuries and we know Every year there are about 9 thousand Italians suffering from brain injuries caused by head trauma. Of these, more than a thousand leading to a vegetative state. And it is important to understand that the final outcomes of diseases or conditions very different from each other, then problems and needs are very similar, beginning with the need to be as much as possible, followed home by limiting the minimum required hospital admissions or institution. Grow the culture, and consequently also the concrete fulfillment of home care is appropriate, I believe, the most urgent battle for life today that is worth engaging. We should be all a bit 'more aware.
(16.12.2010 - intervento alla serata sui traumatiismi cranio-encefalici promossa dall'Associazione Greta e la nuvola)
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