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For those who do not sla - live counter


i miei interventi

I would like to tell you il significato del titolo della serata.
Perché il gioco di parole Per chi non lo SLA riguarda tutti. Riguarda per primo me stesso. Io mi sono ammalato di SLA un anno e mezzo fa. Sono medico, eppure non avevo idea di cosa fosse la Sla. La Scle rosi laterale amiotrofica era un vago r icordo dei libri di neurologia, al massimo rinfrescata dall’essere diventata, per le tv, la malattia dei calciatori. Ma non era qualcosa di reale. Così, ho dovuto imparare in fretta alcune cose:
La prima, che, detto in parole povere, è una malattia che ti toglie tutto, perché, più o meno rapidamente, tutto il corpo si paralizza, finchè progressivamente si arriva a non poter più parlare, mangiare and, ultimately, breathe. E 'can only survive through a tube connected to the stomach and a larger pipe connected to the throat. The only thing you leave is a clear mind.
The second thing I had to realize quickly, knowing and approaching the other patients, are the conditions they live in, in most cases, families. All the weight of care, day and night, lies entirely on the family. You can also wait a year to visit el'indennità accompanying disability, if comes, it comes very late. The benefits of treatment are given and not given. As soon as you arrive at the long-term care, often in very short time, chi può permetterselo assume una, e anche due badanti, si procura il fisioterapista che venga a casa, la spesa complessiva per le cure arriva, nei casi avanzati, a superare anche i 5.000,00 € al mese. Chi non può permetterselo, lascia il lavoro e diventa prigioniero nella propria casa. Conosco più di un familiare che da anni non esce più da casa, e non si ricorda più quand’è l’ultima volta che ha dormito più di tre ore per notte.
La situazione è molto disequilibrata, le cose non vanno ovunque così male, ma nella grande maggioranza dei casi, le cose stanno esattamente come ho descritto...
E allora ho pensato questo, che scegliere di vivere con la SLA diventa un po’ have learned how to swim and then decide they do not want to stop, even if, suddenly, there is going to have to make the current of a stream. The current is the disease, but loneliness and abandonment in which you can find. So, it takes courage to swim against the current .
And then the third thing I learned: it is often said of people with ALS, they are special people who have great strength and, having no time, do not even have to cry on, maybe it is true . Or maybe it's simply that the body becomes a cage, everything: the ability of emotions, desires, dreams, love, even if you can communicate more speak, not only does not fail, but just got greater. Here, the message we want to launch tonight is that if everyone can do their part and things can change. You can continue to live, counter, and stand among others, and have fun and party.

The time is diffi cult to . We are in the midst of a crisis that is by charging the highest price for the most vulnerable. People with ALS are tired. On June 21, took to the streets in Rome for three years because he was tired of promises and postponements, to seek the approval of key measures for the social and health assistance. In Cagliari, yesterday, people with ALS, braved the 40 degrees in the shade because the resolution on continuity of care, ready-to-six months, still waiting to be signed. In Turin, June 21, in conjunction with the demonstration in Rome, Piedmont ALS patients also have protested.
The situation in the region is very uneven, the service works well in some places, less well in others. Where there are valuable experiences, and other home care are seriously deficient.
The regional council, again in the last Parliament, had launched several innovative measures. A decision on the route of continuity of care, which would ensure continuity of care from hospital to home, avoiding inappropriate admissions and containing costs. And then other measures, one for all the care allowance, which still remain on paper. The sick and then the services that should run them do not know them, that no funds are spent.
For the record, unfortunately I have to say sorry that the Deputy Mayor for Health Region did not accept the invitation that had to be addressed here with us tonight. He also said that he would come to say hello, we are still waiting. Let's say that for weeks, to be magnanimous, patients without a flag, and APASLA AISLA with its offices in Asti, Cuneo and Turin, have requested and are still waiting to be received.
We do not go down just sick in the streets to protest, but we also put forward proposals, proposals seem reasonable, and we would like to discuss it tonight in a constructive manner. If a good day starts in the morning, I must say that the day promises to be difficult.

... While they are prepared Gianluca Fantelli ra, I'll tell you a bit 'him. Gianluca, like others of his generation, a boy was playing and tried to "break", but, as often happens with publishers, which sometimes also discard good books, record companies do not know they wanted. GianLuca So, reluctantly, had to shelve the dream of singing professionally, doing anything in life. When, three years ago, is ill, has faced, like everyone else, a very difficult time. Then he came out and one day, on the Facebook page that I and other friends had opened, checked out a message that simply said "Hey, I'm here too." I have contacted, we met on a cold February morning we met in front of the Molinette and he told me, "since I got sick, I know that I did not too long but as long as I want to sing voice."

songwriters and musicians like him, spokesperson of the disease, there are none. He has made up his mind to now become a professional singer and the extraordinary thing is that looking into my eyes said, "and I can."
I do the best wishes to Gianluca, that little by little is being done about that for quite some time his voice, that some problems already have it, but is still nice and warm, it can accompany as far as he knows he can and surely will come.
GianLuca for this adventure has contacted his childhood friend Luca Bollini said Rocco, pianist and composer, and during a meeting at a motorway has told him, was the first in which he did, he fell ill. They cried together, he asked him to come back on stage and Luke agreed immediately.
So they started writing songs again, contacted some of the artists named and slowly these days, is climbing the charts Ligabue on stage to play with, so if you going to vote on Facebook, allow him to go climb up the standings. Well ... we're almost there .... To you Gianluca!

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