How To Reach Tyagi Public

Gretaelanuvola, note e parole ai confini del sogno

.
tell about himself, that he had met by chance on a wave of momentum that brought solidarity to put music in the small universe, the web, had acted as a counterpoint to the story of Greta, a beautiful young girl ended up in coma below to one of many, now tragically usual, accident Saturday night. The story had inspired dozens of bloggers, who, around his sudden silence, had taken to weave a dense web of thoughts, stories, poems, collected in a book and later became the heart of the homonymous show. The lines arising from the story of Greta, now in a state of "minimal consciousness", became so in the thread where ringed, like a pearl necklace, music composed for that purpose. Recently
the streets that the band and the music publishing project and volunteer had hitherto walked together, they separated, one of those crises of growth is not inevitable, but very common in events of this type. The Gretaelanuvola tuttoattaccato are artists in the round, evolving and creative with a definite musical project in mind, you can not confine them exclusively in his native port, failing to see them sooner or later, casting off forever.
And to think that the first meeting with Gretaelanuvola, also happened almost by accident, I confess that I expected the usual group of eager boys and a bit 'of healthy ambition. As I was struck. I learned only after the solid musical background that each of them behind him, some graduates from the Conservatory, all with the right dose of creativity, as well as quite a pantheon of masters from which attingere stili differenti, ma convergenti in un mix assai originale. Io non sono un critico musicale, ma asco ltandoli, così come ancora loro dicono di sé, davvero mi sembra di essere sfiorato dalle magiche atmosfere di Tom Waits e Nick Cave, di Gian Maria Testa e di quel Fabrizio che viaggiava prevalentemente in direzione ostinata e contraria.
Ora, all’alba del 2011 e a partire da Viol@ St. Gree (Cn), rilanciano, portando in giro lo spettacolo originario: della dozzina di brani che compongono l’affresco di Greta, quello omonimo, che di solito conclude la serata, mi ha sempre affascinato per la sfrontatezza con la quale lo eseguono (unita alla delicatezza con cui si può imbastire un origami) using only non-instruments: chitarrine toy kitchen percussion dolls, half-empty glasses, even a Rubik's cube. A song inspired by mild and that close leaving the desire to meet again.
Marlen Pizzo's voice actress, graduated from the school of the building, the sounds with the narrative counterpoint that makes a sort of little Alice Greta. The Gretaelanuvola, set sail from the shores of the Po in San Mauro Torinese, continue their journey of discovery in the balance between notes and poetry, and do not seem to have the intention to stop support.
For those still unfamiliar with them, little Alice in Wonderland that has kept them at baptism is a good way to start dating. With the risk of a friendship destined to last.

(Site: www.gretaelanuvola.com)

Hp 9 In 1 Card Reader Not Recognized By Windows

Come augurare buon Natale senza farsene accorgere

Maigret & Magritte - School of Theater & More
evening of improvisational theater

(Saturday, December 18, 2010 )

E 'was an evening, that the House of Barrio San Salvario, which made me happy.
For some 'time I go around doing different things that I had never done before: I go around talking about this disease that struck me, in ALS, because even if he knows too much poco, e poi a parlare di come se la passano male i miei nuovi compagni di viaggio.
E, poi, mi càpitano cose strane, che non facevo più da quand’ero giovane, come ad esempio trovarmi ad organizzare dei sit in davanti ai palazzi del potere, alternandoli con incontri dentro quegli stessi palazzi, per ottenere, ad esempio, che il diritto alla salute si traduca in servizi domiciliari che permettano a tutti noi di scegliere liberamente che questa sorta di second life, con la malattia, valga la pena di essere vissuta.
E poi ancora, con l’associazione, mi ritrovo a promuovere progetti, che vorrei sempre più ricchi di idee e passione, sia culturali sia di assistenza, di cui l’iniziativa di stasera è stata un bellissimo, inaspettato esempio.
Ma non era di tutto questo che volevo parlare, bensì di questa serata e del piccolo, ma importante progetto correlato.
Sono felice e commosso di aver ritrovato Stella, Emilio e quelli della Maigret&Magrìtte con cui ho condiviso alcune bellissime esperienze del mio recente, eppure, per altri versi, così lontano passato. Il lavoro di un paio d’anni alla asl di Settimo, le contaminazioni con il loro gruppo, qualche seminario fatto insieme, restano, per me, esperienze preziose e indimenticabili. La proposta di questa serata e il loro darsi disponibili per un’occasione di arte, divertimento e impegno insieme, è stato un vero regalo, di cui li ringrazio personalmente, prima che a nome dell’associazione.
Questa è diventata così la prima di alcune iniziative che serviranno ad allestire un piccolo laboratorio di ausili, da mettere a disposizione di Valentina Pasian, logopedista, e di conseguenza degli ammalati di sla. Valentina svolge un eccezionale lavoro, in collaborazione con gli ingegneri del Politecnico, testando e adattando, e personalizzando, gli ausili più diversi, dai più elementari ai più tecnologicamente avanzati.
Da qui il nome del progetto “Te lo dico con gli occhi” , che richiama il comunicatore a scansione oculare, l’unico ponte con il mondo quando la sla, all’ultimo stadio, abbia risparmiato, tra i movimenti volontari, solo più il movimento degli occhi. Per poter svolgere al meglio questo lavoro, Valentina ha la necessità di ampliare il ventaglio di strumenti a disposizione, per cui servirebbe un budget tutto sommato contenuto, di circa 5000 €, che lo stato attuale dell’Università, francamente pietoso, non consente.
Intendiamoci, io credo che la beneficenza da sola non basti, che sia benemerita solo se è integrativa, e non sostitutiva degli interventi istituzionali. Ma questo è precisamente uno dei casi in cui un intervento integrativo, di dettaglio, può fare la differenza.
Ecco dunque spiegato perché sono stato doppiamente felice e perché avrei voluto, se avessi potuto, abbracciarli uno ad uno, registi ed attori della serata. E, anche, augurare buon natale ad ognuno dei presenti.
Naturalmente, anch’io, senza farmene accorgere.

Il ricavato della serata, particolarmente generoso, è stato interamente devoluto all’ APASLA per il Progetto “Te lo dico con gli occhi”, allestimento di un Laboratorio di adattamento ausili per la quotidianità e la comunicazione aumentativa alternativa.

My Period Is Very Mucus

Per una solidarietà consapevole


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)

Global Gemstone In Toronto

Due o tre cose che so di lei


Venti mesi sono trascorsi da quando mi sono ammalato. Un lasso di tempo breve, eppure è il tempo di un’altra vita.
E ora so.

So cos’è questa malattia e so che, nei casi come il mio, uccide in fretta.
So che, dopo aver perso l’uso di gambe e braccia e mani, sto perdendo la voce, per sempre.
Ora so che tra un po’, non molto, dovrò farmi fare un buco in pancia per mangiare e uno in gola per and breathe to stay alive.

I know that Enzo is gone after 12 days of agony, during which he unsuccessfully pleaded that he be spared torture. Years before, he had freely accepted the artificial ventilation, and now he wanted to remove it, the law prevented it to him.
I know that informed consent is a dead end. Freedom of choice in this country, is always bail.
Now I know that when will be my turn, I'll have to fend for myself or make a national case. To see fulfilled their will without a fight, you are forced to emigrate.

I know that if you get sick and preserve, or you find yourself, an entrepreneurial spirit, di regola fai una Fondazione e subito dopo sfrutti anche tu la magica parola: ricerca. Che, magicamente, ti apre tutti i portafogli.
Ora so che I fondi per la ricerca fanno bene a tutti, fan bene a chi li dona, fan bene a chi li raccoglie, ma, soprattutto, fan bene a chi li gestisce.

So che la malattia ti spinge a farti uguale a lei, a diventare, nel migliore dei casi, un caso umano, da ammirare o compatire.
So che vorrebbero che tu combattessi il male, così da esorcizzarlo per procura.
So che se invece vuoi combattere ipocrisia ed ignoranza, te la faranno pagare.

Ora so che c’è chi celebra la mistica della sofferenza e dice che la malattia è un valore aggiunto.

Io, più laicamente, mi accontento di vivere questa mia nuova esperienza con dignità.

(11.12.2010)

Wordings For Aniversary Wishes

Anche la Sla al tea-party di Rai uno


Domenica 28 novembre 2010

Mario Melazzini ha partecipato questa mattina ad una trasmissione su Rai uno espressamente commissionata dalla parte politica cattolico integralista per rispondere a Fazio, Mina Welby e Beppino Englaro. Una trasmissione che ha contrapposto supposti fautori della vita a supposti fautori della morte. Quello che è intollerabile, per questi signori, è che per una volta si sia data voce ai deboli e i sofferenti allorquando, attraverso la propria storia personale, giungano a considerare la propria life no longer worth living. What is intolerable is that they also give space to these voices, finally trying to break a taboo always open to criticism.

Dr. Melazzini said he was offended by that show, blaming a "lack of knowledge and lack of listening", and thus attack who, on their skin, live a different reality, different beliefs and ages. I, too, medical and sick with ALS, I could say I feel just as offended by the misinformation that I heard speak this morning from a forum Rai. In almost two years of illness I knew the entire universe of patients, I can not think of is unknown to the President of main association that deals with ALS: is the small part of patients who chose not to let die, practicing tracheotomy and artificial ventilation, and the vast majority, those who reject the intervention mainly because they are forced, by the absence of State, to live in a state of neglect, as rightly pointed out Melazzini, but also a third party, that choice to those induced by the knowledge that they can not turn back, as will be dispossessed of the right of choice, aware that the informed consent to acts invasive medical applies only once. Speaking of listening skills and ignore the right of self to other means to oppose ill patients: no accident has spoken of the patient as "the bearer of need," to attend a patronizing to the point of deciding for him, while I speak of the patient as a person, as such, "the bearer of rights." And the right to receive appropriate treatment can not be separated from the freedom of choice.

In the afternoon, then aired the second episode, this time in "Sunday in the" where, silenced a lost Ignazio Marino, a gay cruise company cathode (plus Melazzini, the pro-life movement, the future , Senator, and Roccella philosopher pret-a-porter Stefano Zecchi) have closed the circle talking about denial of care, such as suicide and euthanasia were the same thing. No doubt about it: a clear exercise of intellectual honesty.
If they wanted to convince me that between secular state and Catholic fundamentalism there are issues that can not be open to negotiation, we are fully successful.

.

Milena Velba With Pregnant

Una grande, prima vittoria

A monthly allowance for each ALS patient to recruit an assistant familia r and

Rome, Wednesday, November 18 17:00
I tune with the live show from the House while the session was adjourned. I can not believe, but you are risking the government crisis for patients with ALS.
happens that the speaker of the PDL brought into question the amendment announced, again without any planned expenditures and Fini said that without the famous 100 million votes against future and freedom. Fini himself suspend the sitting and arguing for an hour and a half, before putting pen to paper round figure. Back in the classroom and finally the measure is approved.
E 'was taken for the purpose of the ambiguous "promotion" of the sentence that would mean giving to those who has nothing to do, while the remaining two items on care and research. Well, the first step is done: now we must work for the aid to those who have really come in ALS: 10% for research (10 million requested) and 90% for families to recruit an assistant for one year familiare.
Ci batteremo perchè ogni Regione istituisca i registri degli assistenti familiari formati e perchè attivi, in analogia con quanto si è avviato nel Lazio, i corsi di formazione.
E' un'altra battaglia durissima, ma oggi è accaduto qualcosa di assolutamente nuovo e straordinario. Davide ha sconfitto Golia.
Ed Emanuele scrive, per il neonato Comitato 16 novembre, il primo comunicato stampa:

FINANZIARIA: STANZIATI 100 MILIONI PER MALATI DI SLA E FAMILIARI Soddisfazione del Comitato 16 novembre nato dopo il presidio di martedì a Roma

In data odierna la Camera ha approvato l'emendamento alla Legge di stability which allocates € 100 million intended for research and the recruitment of domestic helpers, according to the promise Tuesday, November 16 with a delegation of people with Amyotrophic Lateral Sclerosis (ALS). On average it would be a contribution of approximately € 20 thousand per year per family. "We welcome a measure which, when confirmed by the Senate, will represent the first concrete act of paying attention to patients with ALS and their families, always ignored in any decision in favor of 'weak' - this hot comment Alberto Damilano, doctor and patient with ALS promoter Salvatore Use it in conjunction with the event before the Tuesday, November 16 Ministry of Finance -. It 's a great first win. That said, we invite all those who are mobilizing to us, in order to take on high alert and have in place all the possible forms of pressure because the whole amount to be allocated to that for which it was required: the necessary cover for the 'recruitment of a family assistant for each patient with ALS. "
"I am very satisfied because it is a year fight for a measure and there are those who are serious to lose time behind councils and commissions - make Salvatore Cagliari Usala -. Now we must be careful with four eyes turned to the hunters who want to undermine one hundred million seats for their own use and consumption. "
"We know that attempts to frustrate this outcome will not fail and that from tomorrow on this fund is to unleash the attack care - Use it and conclude Damilano -. It is time for ALS patients to begin to actually receive aid for home care who you are, so far, denied visas on time. "

The Committee November 16

(7. End)

.

How To Build A Horizontal Fence

Nasce il COMITATO 16 NOVEMBRE

Rome, Wednesday, November 17 at 14:30
patients and their families should come together and, along with those who could not be there but is connected via the Internet, you are in Comitato 16/11.
Il Comitato è una rete informale di persone, malati di Sla, familiari e amici, che si riconoscono nella lettera aperta inviata al governo da Salvatore Usala e Alberto Damilano, considerano questa data un momento fondativo per la battaglia concreta dei malati in difesa della propria dignità e si impegnano a proseguire senza interruzioni il Presidio avviato, sostanziandolo con azioni positive che non daranno tregua alle Istituzioni inadempienti nei confronti del diritto alla salute scritto nella Costituzione.
I primi aderenti sono:
Salvatore Usala, Giuseppina Vincentelli, Alberto Damilano, Francesca Giordani, Laura Flamini, Nadia Narduzzi, Paola Ecoretti, Mariangela Lamanna, Marina Mercurio, Emanuele Franzoso, Raffaele Pennacchio, Hans Benedetti, Giuseppe Di Criscienzo, Raffaella Giavelli, Stefano Marangoni, Anna Cecalupo, Paola Benetti, Patrizia Cecchini, Maria Rosaria Passaro, Luca Pulino, Sara Ursella, Leo Bartolini, Claudio Daoglio, Lapo Simonetti, Giuseppe Lamanna, Rose Cristaldi.

to join just type in comitato16novembre@gmail.com
Site: http://comitato16novembre.blogspot.com/

(6. Continued)

.

What Does 1 Kilo Of Fat Look Like

L'attesa

Rome, Tuesday, November 16 17:00
Go back to the hotel and nerve-wracking waiting begins. Do not leave any statement. Good heavens, and how long it takes to write four lines? Then fiinalmente appears, published on the website of the Ministry, and are really four lines on the cross. But the real problem lies elsewhere: it is too general, the figure has not been quantified. My first reaction, instinctive is that there are a ornaments, they would say here. Seeking
Tore, Josy but not responding. Try to do with work, Emanuele, which acts as a press office, insists that there is no time to lose, if you do not send a statement to Ansa is "piercing" the news of the evening. I begin to write the answer that we consider inadequate when, finally, cell phones begin to ring. We discuss animatedly, then I am convinced: to return to the streets tomorrow expose patients to an endless tug of war, will not write one more line to the presentation of the amendment. But we have the ball: without a figure we are paradoxically stronger, because it allows us to keep the point, or an amount determined by us worthy or if they take, we do not want handouts.
I feel the burden of responsibility towards all. On the other hand will be played in short cards, once a day or two. So we agree the text
suspending the garrison.

Alberto Damilano, Salvatore Use it, signed the letter sent to Tremonti, Fazio and Sacconi and promoters of the garrison of Rome Tuesday, Nov. 16 to declare together Pichezzi Mauro, president of Viva la Vita Onlus: "Following today's meeting as a delegation from the Ministry of Finance have reviewed the official press release 186 number posted on the ministry website. We welcome the commitment made for the submission of an amendment to the Budget debate in the House with a budget appropriate for the benefit of patients and families to be raised immediately by the heavy weight welfare who are forced to endure daily .
recall that, in line with what is required and discussed at a meeting with the representative of the Ministry quantification of the financial commitment must be not less than EUR 100 million. Patients look forward to the respect of his word, also make it known that constant vigilance to ensure that the words followed by action.
Failure to measure or quantify low that it qualifies as a pittance against the intervention of the sick, respect for the dignity of the same force us to return immediately to the permanent garrison so that means temporarily suspended.

(5. Continued)

.

Best Mini Cooper Year

La trattativa


Roma, martedì 16 novembre ore 15.00
Dopo 5 ore trascorse in piazza, di cui le prime due sotto la pioggia, saliamo in tre nelle stanze del plumbeo Ministero dell'Economia: Salvatore Usala, Mauro Pichezzi ed io. Si intavola la ttrattativa, che procede spedita. Il Ministero si dice disponibile, ovviamente purchè il Governo non metta la fiducia, a presentare un emendamento alla Finanziaria. Loro dicono che non possono sbilanciarsi sulla cifra, noi ribadiamo che servono 100 milioni e che non accetteremo elemosine. Loro dicono che non possono promettere di più, noi pretendiamo un impegno nero su bianco, in caso contrario domattina saremo di nuovo qua sotto con le lettighe. Prendono tempo, si consultano, poi ci dicono che prenderanno un impegno pubblico.
Come ho scritto sul Forum dei malati:

Si tratta di una svolta. Per la prima volta abbiamo avviato una mobilitazione PERMANENTE, di cui il presidio sotto il ministero è solo un momento. Il presidio permanente si sostanzia nella battaglia che stiamo conducendo. Per la prima volta abbiamo aperto una possibilità concreta, e questo è solo l’inizio. Per la prima volta due malati si sono esposti con nome e cognome senza bandiere o sigle, alle generiche promesse abbiamo contrapposto la richiesta di un IMPEGNO SCRITTO. Per la prima volta anziché un obiettivo altisonante e irraggiungibile, nel corso della trattativa ci siano concentrati su un PRIMO OBIETTIVO MOLTO CONCRETO E IMMEDIATAMENTE VERIFICABILE.
did not write 100 million? We said and we repeat it publicly, we do not accept alms. After a public commitment if they think of bestowing charity disgraced. If you put the confidence in the financial and government falls, resubmit the request, verbatim, to the next. After four years of words this time the going gets tough.

(4. Continued)
.

Papa Johns Swot Analysis

Perchè siamo qui

Rome, Tuesday, November 16, at 13,000
This is what I have said before boarding the delegate of Tremonti:

I would like to express what I think is the true meaning of our being here today in Rome. I am convinced that what unites us all , patients and their families gathered here, is not only the wish to claim, with quiet determination, the approval of measures essential to the civilization of a country, measures expected, promised and postponed for too many years. What unites us is, above all The choice of take over our destiny, we may be the protagonists of this movement, civil and human without proxies in white to anyone.
There is a new fact that must be understood: the sick di Sla non si sentono rappresentati da tutti coloro che troppo spesso, in questi anni, tra noi e fuori del nostro perimetro, si sono proclamati, di volta in volta, voce dei malati di Sla o, addirittura, Presidio al posto nostro. A tutti costoro diciamo: grazie, ma questa volta potete astenervi, questa volta facciamo da soli. Ma sappiamo in realtà di non essere affatto soli: le condizioni di vita che denunciamo, la mancanza di un livello minimo di assistenza domiciliare garantito per tutti, riguarda tante gravi malattie, altamente invalidanti e tutti i non autosufficienti, vale a dire milioni di persone nel nostro paese.
Forse nessuno meglio di noi malati di Sla può capire cosa significhi un bisogno assistenziale continuo che, giorno e notte, 24 ore su 24, grava interamente sulla famiglia. Mogli, mariti, genitori e figli, a seconda dei casi, sono costretti a lasciare il lavoro, a non uscire più di casa, a non sapere come affrontare le spese, a doversi, addirittura, accollare la responsabilità di manovre che salvano la vita nei momenti di crisi.
Per me che vi parlo, essendo passato, quasi da un giorno all'altro, dal curare gli altri al ritrovarmi ad aver bisogno di tutto per svolgere le attività quotidiane, per me che, giorno dopo giorno, sto progressivamente e rapidamente imparando quello che deve affrontare un malato in fase avanzata di Sclerosi Laterale Amiotròfica, tutto questo appare drammaticamente vero e drammaticamente distante dall'essere known and adequately addressed. A person with ALS has constantly faced with a dilemma: to decide that this is no longer life, refuse to intervene to switch to artificial respiration and let die, or decide to go on living. Once you are sure your attachment to life, the love of their loved ones, love of friends, the difference can make only those measures that can be avoided at all sick of seeing their family consumed under house arrest along with their .
And the reality is that today, in our country, more than 8 out of 10 patients decide to die out. We simply want to be an end to this post che è una vera e propria eutanasia silenziosa . Siamo qui, oggi, esattamente per questo, lo saremo anche domani, fino a che non avremo risposte concrete.
Non ci arrenderemo.

(3. continua)
.

Dora The Explorer Invitation Quotes

Cronaca di un diario mancato


(giovedì 18 novembre)
Avevo immaginato un "soggiorno" a Roma lungo e difficile. Tra noi si parlava di notti da passare in tenda a turno per proteggere un presidio non autorizzato.
Tutto è invece stato così tumultuoso e imprevedibile che il pc ha potuto essere utilizzato solo per mail, contatti volanti, comunicati ufficiali. Per fermarsi a raccontare ci sarebbero others took a good tempo and rhythm, the reality of what has happened has overwhelmed even the good intentions to spend every night a small space that could communicate, who was not there, the climate, as well as the record of those events. A
things done after the approval of the amendment, for lost time, mission impossible, I just have to rely on "memory pieces" mea culpa for the non-diary.

(2. Continued)
.

Monica Roccaforte Movis

In partenza per Roma

Diary Presidium of patients with ALS

(Sunday 14)
I'm leaving. I do so with a mixture of anxiety and enthusiasm.
are restless because the company we have set ourselves is to shake those from the veins and wrists in front of us we have the hard rubber wall, vertical and top of the ministerial bureaucracy and indifference of bad policy. And we're terribly fragile. Indeed, we are physically debilitated worse as we could.
are full of enthusiasm, because I feel calm determination among us who know to be right and I know that we have worked well.
Tuesday riincontrerò them, these my "fellow travelers" traveling companions knew nothing of which up to a year ago.
And I'll feel at home.

(1. Continued)
.

How To Get A Shiny Rayquaza In Pokemon Emerald

NON SI RISPARMIA SULLA DIGNITÀ: UN PRESIDIO PER LA VITA

Patients with ALS and their families are tired of promises: first attended the endless revision the "new" Essential Levels of Assistance, collected over two years ago by the government, then the constant references, while the practice has now stopped for months on the table of the Minister of Economy.
They followed the Commission's work for years, last in time order the consultation of neuromuscular diseases, appointed by the Minister Fazio, has produced documents regularly set aside.
took to the streets, June 21, and were hastily dismissed by Secretary Letta, ertosi then to Presidio in favor of the disabled and the guarantee of a speedy approval of the LEA.
Finally, they saw a fall on deaf agenda presented by the Honourable Maria Antonietta Farina Coscioni, approvato dal Governo, che impegnava il Governo stesso ad emanare, entro il 30 settembre 2010, il DPCM sui LEA, termine da considerarsi perentorio, salvo che il Ministro Tremonti fosse intervenuto in Aula a riferire sulla mancata emanazione, chiarendone il motivo.
Anche se indignati, stanchi, delusi e molti addirittura alla disperazione, non hanno perso la voglia di lottare e comunicano di aver deciso quanto segue:

Il giorno 16 novembre 2010 dalle ore 10,30 noi, malati in carrozzina, anche con tracheostomia e PEG, saremo davanti al Ministero dell'Economia per farci carico di un PRESIDIO PERMANENTE sino a che il Ministro Tremonti non ci darà risposte esaustive. Prendiamo l’iniziativa, per noi e for millions of seriously ill, disabled and dependent, which can no longer wait for the right to health is respected and to a dignified life, enshrined in the Constitution.

consider urgent priority and the following measures:

1. Financial coverage and approval of Essential Assistance Levels (LEA) and its tariff nomenclature aids.
2. Financing of € 100 million for the care path proposed by the ministerial consultations of neuromuscular diseases, such funding should be reserved for family support for training and employment of family carers. The regions will contribute una pari quota.
3. Finanziamento di 10 milioni di euro per ricerca di base e clinica da effettuarsi in 10 centri universitari italiani con metodologie ed obiettivi condivisi e sinergici.

Tutte le persone non autosufficienti e tutti coloro che sono affetti da gravi malattie altamente invalidanti attendono provvedimenti concreti e si augurano che il Ministro Tremonti decida subito che la vita delle persone è più importante di tante spese che possono aspettare, come ad esempio i miliardi previsti per gli aerei da combattimento F35, che sono uno schiaffo all'intelligenza umana ed alla vita stessa.




.

Chennais Best Numerologist

COUNT IN THE LIBRARY ...

I the book is finally available in the libraries of most of Italy: Lazio, Lombardy, Emilia Romagna, Marche, Abruzzo, Molise, Sicily and Sardinia.

readers from other regions can request their copy in the publisher's site ( www.unmondoaparte.it / dracula.html ) and in the best "Web Library" www.ibs.it , www.bol . it, www.libreriauniversitaria.it , www.deastore.com , www.hoepli.it .

The book can be purchased at the Feltrinelli of Alexandria and Film Library in Florence.

Regarding the Veneto, Vicenza, the book is available in bookstores and ordered Edison BookStore (36 Corso Palladio, ext 3) and Galla (Corso Palladio 10).

Stefano Leonforte

" Bram Stoker's Dracula. The second vampire Count Francis Ford Coppola "

A World Apart , 2010

252 pp.

Foreword by Paolo Albiero.

unpublished interview in Jordan Stone, Anne Goursaud and Dante Ferretti.

Spanish Translation For Lorazepam

AVAILABLE ONLINE

I ordered the book has already onlin and some "web library" ( ibs , libreriauniversitaria ) and the official website of the publishing house "A World Apart": http : / / www.unmondoaparte.it / dracula.html

The output is expected to be in bookstores next week.

A quick details.

Is It Okay To Drink Alcohol With Kre-alkalyn?

Quando a 54 anni ti colpisce la Sla...

Interview on life beyond the disease

Carry-long interview, excerpts of which I obtained from the local newspaper of the city where I was born, for the same reason which I issued: the hope that it will be helpful to those who are facing the same experience. If you want to comment, do it with your own personal thoughts on the topic. Contrary to what might seem, I still have much to learn.

As a physician, you always worked in the field of mental illness and drug addiction, right?
Yes, the day before the State Exam I started the civil service at the Center for Mental Health and Sert Fossano. That was the first learning experience and taught me a lot, because it was the first contact with mental illness. Leave in the morning with the van, put a dozen people and took them to the Centre in the afternoon I took care of Sert. It was a good gym. After a conscientious objector I worked there about a year. At that point I thought, however, that in the big city I could compare with actually more demanding of greater thickness. Thus, with regard to the discourse of addiction, wound up Gruppo Abele, where I met my wife and I "Taken away" (took care of the work and the time was president of the cooperative formed within the Group). Don Ciotti asked me to stop a couple of years and that was an important experience. Then I settled in Turin. 86 Francesca and I got married the year after I won the ASL. Four years after our daughter was born Micol.

You're close to retirement now?
No, I am "young" (laughs), are of '55. I did not think the board, because I always liked the work I do and because I had the good fortune of being with colleagues. In these twenty-five years we have continually tried to invent new experiences, projects, explore fields that are not yet defeated, and this, in terms of personal rewards, is important. And also because I have lots of ideas and then, of course, I did not think the board.

The disease, however, put you in the face of this choice.
course. The illness has forced me to close with this. Because obviously you are not all the incentives and interests that you had until the day before and you have to measure up to a completely new reality, which requires you to adapt and find new motivation, because otherwise you have no future. If you plan to go on with life as before, risks depression. Mean you have to design your own experience "beyond."

When I appeared the first symptoms of the disease? The
all started in late February of last year.

Fast.
fast. I was in the garden. I am about to jump a wall and I feel embarrassed. I say: "I must take to make the move. I wear a suit and I go running. But within 15 days I realize that is not only a lack of form and movement. I begin to feel weakness in legs, limp. Since Christmas I also had back pain, a herniated lumbar physiatrist find me (this is one of the most frequent cases of error diagnostico); faccio infiltrazioni, ma il rimedio non funziona. Zoppico; comincio a non correre più...

Quando hai cominciato a pensare a qualcosa di serio?
Fin da subito, ma il primo a mettermi in guardia è stato un chiropratico, che mi ha consigliato di rivolgermi ad un neurochirurgo: secondo lui era da escludere un problema di tipo meccanico. Faccio quindi la priva visita neurologica e nel giro di cinque giorni ho praticamente la diagnosi. Eravamo ai primi di giugno. Vengo inviato al Centro Sla delle Molinette. Purtroppo per la Sla non esistono indicatori oggettivi della malattia: la diagnosi si fa praticamente per esclusione e seguendone l’evoluzione. Si esclude che ci sia un problema di tipo meccanico, si excludes multiple sclerosis lesions detectable, infection is possible that there are ... Confirmation will then be over time. The average diagnosis is in fact a year and a half after the onset of symptoms. The fact that I knew - with sufficient awareness - within three to four months, which could be a degenerative disease, is an exception.
Unfortunately, during these months, a fact that has happened to me greatly deluded. In the summer, after a serological test that is done to rule out any infection, showed positive for a bacterium that is transmitted by the bite of ticks. They are then treated with a strong dose of antibiotics into a vein. The fact is that these antibiotics, in a first dose, may have a beneficial effect regardless of transient infection. I walked in early September again. I was deluded.

Eri warned of this?
No. Besides, having this positive, I really thought I got an infection from ticks gardening ... I thought maybe I would not have recovered 100 percent, but I started to convince myself that it was not of a degenerative disease. After a month, is back as usual ...

Definitive diagnosis, therefore, came after the illusion that it was an infection.
Yes, around October. I told the neurologist: "According to Sla me, lift the reservation. " Certify this situation to me wanted to begin to put a hand to my life, as well as a number of practical things: ask the tour of disability, to think of my work, retirement, etc. ... The neurologist decided to put aside the over-cautious and has certified the disease. I was warned not to think immediately so tragic, catastrophic, because every case is unique, only time will tell what is evolution. They try to make you understand that life does not end there, it's not a tumor ... After all it is. There are people who, after ten years, we still have not yet made the tracheotomy traveling in a wheelchair, are active.

Your case as it arises?
Mine is a classic form of amyotrophic lateral sclerosis, those that lead to death from respiratory failure within two to three years after the onset. Unless you choose, a little 'before the first respiratory crisis, to do the tracheotomy tube and you put the practice of artificial ventilation. At that point, unless complications, in theory, your survival is guaranteed indefinitely.

When you must make the decision on the tracheotomy?
depends on how things go. In my case the disease started from the legs in February 2009 (per altri comincia dalle braccia; per le donne, in particolare, spesso parte dalla parola); a novembre ho cominciato a spostarmi in carrozzella. In sei-sette mesi ho perso dunque l’uso delle gambe. A gennaio ho cominciato ad avere problemi a scrivere e a giugno-luglio mi si sono bloccate le mani.

Dunque tu non puoi scrivere al computer?
Uso la tastiera virtuale; muovo il mouse con la mano destra e clicco con la sinistra. Da febbraio, marzo ho avuto un calo di voce e poi difficoltà a pronunciare alcune lettere. Credo che a fine anno avrò forti difficoltà a comunicare e, per uno come me, che ama tanto parlare, è terribile.

Lo immagino.
If the trend is like this, the next step is feeding difficulties. So at that point, to avoid going under weight or get pneumonia from ingestion of food, it's up to the Peg, that is inserted through an operation, a tube that provides direct access to the stomach. Almost at the same time - or sooner or later - if you weaken and then block the respiratory muscles, you start having difficulty breathing. The first step is ventilation at night, because you can go sleep in hypoxia, so we start with an external fan (masks), before putting the pipe. The problem is that a severe respiratory failure can also occur without large signs, for which we should anticipate this choice.

You've already made your decision?
Yes, I have started some time to think about it. My path has been very difficult. In the summer, both before and after the illusion of being able to cure the infection and heal, I thought about suicide ... Because the prospect of life in a bed, motionless, with the ability to communicate only with eyes, perhaps assisted by carers and nurses, I had to say: "No, that is not life. I finished the first, with the help of some friends colleague. Then, once we had confirmation of the disease, I took time to reflect. A study che è durato un paio di mesi. Mi sono detto: “Datti tempo”. Io sono sempre stato un carattere abbastanza impulsivo; faccio fatica a fermarmi per assumere decisioni consapevoli e meditate. L’impulso maggiore a decidere è venuto da Francesca, che mi ha detto: “Io ci sono; qualsiasi decisione tu prenda io ci sono”. Non è una cosa così comune. Molti malati sono rimasti soli perché chi gli era accanto non se l’è sentita di intraprendere un percorso così difficile. Ho capito che per lei sarebbe stato molto più duro immaginare che io rinunciassi a vivere, rifiutando l’intervento di tracheotomia. Inoltre Francesca mi ha consentito di uscire da un vicolo cieco che si presenta a chiunque abbia di fronte la prospettiva di una grave invalidità, e si trovi a dover scegliere tra vivere o morire. E cioè il fatto che man mano che l’invalidità avanza non ci si sente più persona, cioè non ci si identifica più con la propria storia, con quel che si è. Interviene un problema enorme di identità. Non sai più chi sei. Nel momento in cui diventi un disabile, tendi a svalutare tutto quello che sei stato. Per questo devi riuscire ad avere intorno a te delle persone che ti fanno da specchio e ti rimandano che tu sei sempre tu, anche se non cammini, se non parli, non mangi. Se riesci a mantenere la mente lucida, se continui a poter comunicare, la tua integrità come persona è assolutamente preservata. Questo ti gives a boost awareness and to survive. I have the good fortune to go through this experience.
I speak with difficulty because one thing is what you feel with yourself is one thing to know the weight, but also daily existential fatigue that will cover those around you. This makes me come to terms with feelings of guilt that they have no reason to be, but they exist. It is therefore a good battle. But, basically, all this has enabled me, within two months, saying: "I go forward."

You said that a decision is by no means a foregone conclusion.
No. The thing that nobody knows is that in Italy, also one of the countries where it does more for degenerative diseases, only 15 out of 100 patients agree to the trachea, the other chose to die. I'd like to contribute to ensuring that this percentage is reversed.

How do you think we can reverse this trend?
You get to think that life can still give you a lot. It can be very rhetorical say: "This is a new experience that took me a lot but, like all experiences, can give me a lot." It may be a rhetorical phrase which seeks to autoconvincerti, or it may be something to come because you have prepared, for you have dug deep into your reality and becomes a mental, rather than something fake. Ma per farlo servono alcune condizioni. Intanto devi avere già un atteggiamento di un certo tipo nei confronti della vita. E poi devi avere qualcuno che ti ama, perché noi siamo le relazioni che intratteniamo; soli e isolati diventiamo degli oggetti, che non hanno più nessuna possibilità di dare un senso alle cose che succedono. La terza condizione - ed è quella che spesso manca - è che le persone che ti amano devono essere a loro volta supportate perché altrimenti rischiano di ammalarsi con te. Servono sostegni di tipo professionale e anche economico, che consentano di condurre insieme una vita sufficientemente degna. Io conosco degli ammalati i cui famigliari non ricordano più l’ultima volta che hanno dormito tre ore di seguito per night or whose families do not leave the house for years. Because the disease progresses it takes 24 hours to support 24. A friend of mine Sardinia, an economist, assisting the mother does not go out of the house three times because only his timely intervention has prevented the parent succumb to respiratory crisis. "And if I go out and it happens again? - Said my friend - I could never forgive myself. " My friend so does not go out.

even missing home care?
Yes, and they are not isolated cases. Here and there we are happy cases, interesting experiments, but the experience of 5000 patients with ALS and the thousands of people dependent is to abandon both in terms of economic welfare.
Nearby lives a girl of 22 years, four years ago had an accident and was in a state of deep coma, is now in a state of "minimal consciousness." Her eyes open and react to stimuli of elementary parents. Would a physical therapist at home. The father says: "We stimulation, but can not do it anymore." To nourish the hope must be that the institutions in the field of adequate services, there is the possibility that someone will come home and put in the field of rehabilitation interventions, or otherwise - that can make sense of the fact that one chooses to continue to live.
Se l’85 per cento dei malati sceglie di non fare la tracheotomia, è perché non se la sente di continuare a vivere in quelle condizioni; oppure se la sente, ma è solo, non ha chi gli vuol bene. Oppure sa che non avrebbe il sostegno adeguato, né lui né i suoi cari, per poter andare avanti. Ma c’è un altro fatto: anche se tutte queste tre condizioni ci fossero, sai che dopo aver preso la decisione di andare avanti non puoi tornare indietro, non puoi più “staccare la spina”.

Tu credi che l’irreversibilità della scelta sia uno dei motivi che fa dire no alla tracheotomia e quindi rinunciare alla vita.

I think so. I know a dear friend who has already decided to do a tracheotomy because of these reasons. How

associations you are playing something for a change?
This is a very difficult discussion, because their consciences are divided. I think I can say, having known many of the sick, those living on their skin that this situation does not think so ideological or fundamentalist. The person's right to life includes the right to be able to die peacefully adapting to your personal meaning of life.
Life is not always, but a life worth living. This presupposes an inalienable right to choose their own destiny. But even in our associations, if you talk about self-determination steps for fighting to the death, passes to a nihilist ... This is a form of coercion, widespread, even among experts. Unfortunately, when making speeches like this, you tend to take sides and instead simplify something that is very complex.

And you, despite everything, you feel like saying yes to the tracheotomy, to go forward. Yes
While talking about these things I'm excited, actually I have a very curious attitude that I enjoy what I do every day. I enjoyed the first and still fun now. So it is quite natural for me not to give up living, unless, of course, do not they are going the conditions that I mentioned before, the lack of love and support that keep you from facing life in this spirit. I know very well that, compared to other patients, are privileged. For all these things feel like. Absolutely.

Now we come to something more ... easy. As soon as you came to your knowledge of this condition, you put you in touch with associations dealing with it, to inform.
Yes When, at the end of 2009, I finished those few months of "quarantine", I enrolled in a national forum (SLA Italy) with the participation of a few hundred patients or their families, and that allows you to communicate in real time. It is a kind of self-help and is also an interesting source of technical help. I started to hear the stories and situations of many sick and at the same time I made public my condition. I had never made any secret of my illness (at work, with friends), but that was the moment I started to tell my story, to bear my testimony.
I also wondered what could I do, as a doctor, to give meaning to my "still there" and keep doing what I've always done. After all, Doctor, I have always tried to put across the desk. In this case it is much simpler, because now the other side of the desk I'm here too. And so I have a credibility and an opportunity to understand much more than before.

And you promoted a new blog.
Yes, a girl of Alghero, a lawyer from Rome and a colleague of Caserta I opened a different way, with the aim of giving support to the complaint and provide correct information. In twenty days they are enrolled in five thousand. Something totally unexpected, not budgeted. Access must be members of Facebook.

You wanted to prove yourself as a doctor. Yes
Because what interests me is not only learn about other sick or raise funds to send a qualche ente di ricerca (che spesso, ahimè, adottano metodi clientelari), ma cercare di lavorare, di far crescere il ruolo pubblico sia nel campo della ricerca che nell’organizzazione dei servizi. Ho parlato con i colleghi che mi hanno in cura. Ho spiegato che mi sarebbe piaciuto fare un’indagine in Piemonte per conoscere il livello assistenziale reale; quindi incrociare questo dato con quello che viene dichiarato dalle istituzioni socio-sanitarie per ottenere una fotografia sia delle esperienze pilota - che pure ci sono e funzionano - e sia delle enormi criticità, per poi provare ad immaginare un progetto di intervento il più completo possibile.

E chi si occuperebbe di questa indagine?
Quando ho proposed this idea to the professor. Adriano Chiò (university professor, a leading expert with ALS, who opened and directs the Center for ALS Molinette), I learned that there is a regional project which aims, in two years, to design and test the territorial network of assistance to neuromuscular diseases. Meanwhile, last December, the then Regional Minister of Health had identified Artesio Eleanor, although generally, the territorial network of assistance to these diseases and had established two reference centers in Turin and Novara. All this means that in Piedmont, more than in other regions, the initial conditions of interest.

So you will look you in this interregional project.
I am candidate to carry it forward. I started working on putting together a small working group: a graduate student in social sciences, for example, which is helping me to put down a questionnaire administered to all patients. The idea is to start with the first step of the project. If I can do it as good public servant, although there are a sea of \u200b\u200bred tape, otherwise I do at the level of volunteering. This is the first thing that I care a lot.

There is a second thing?
Yes I have tried to set up some initiatives with the aim also of vision, as well as raise funds, even to be able to put together the different associations. I tried to set a speech that not only relates to this specific disease, but look at all the diseases that have similar social and health needs, and all serious disability. Looking for volunteers to implement these initiatives, I have come in contact with other associations, with the Apasla - Piedmont Association for assistance to the SLA - which, unlike others, has a very cut and is operating a concrete point of reference for sick.

is with these volunteers who have made the concert in July at the Lingotto? Yes
In February I met Gianluca Fantelli, singer / songwriter from Bologna with ALS. I told him: "You're the only artist who can be the national spokesperson. I'll come and sing in Turin. " And so, with the help of a small group of volunteers and a city councilman in Turin, we set up a project and the concert in July. At the same time, as they were rejected a number of very important measures (including carer's allowance and the establishment of the assistant family expert), we organized an initiative in June to protest to coincide with the national one. I went to Rome to seek the approval of the new Lea (essential levels of care), while other patients have experienced in Turin la Regione. Abbiamo ottenuto l’apertura di un tavolo di confronto permanente.

Un tavolo non si nega a nessuno...
Sì: tavoli, documenti... Quello che io vorrei, invece, sono incontri periodici in cui avanzare proposte concrete, sostenibili, a cui non si può dire di no a meno di ammettere la mancanza evidente di volontà politica. Dopo l’iniziativa di luglio, comunque, sono stati sbloccati gli assegni ed è stata accettata l’idea di istituire un primo corso per i badanti esperti.

E veniamo al concerto del 29 ottobre a Venaria Reale.

A differenza dell’iniziativa del Lingotto (dove il concerto era accompagnato da una conferenza), Venaria intend to do something lighter. A show without talking, without intervention. I did send a photo report on the SLA (very nice), there will be music and lyrics by Gianluca and, as regards their information, we will distribute a brochure that explains what the SLA and the sense of the event.

The two concerts are in support of the activity you are doing?
have the specific intent to make a concrete contribution to everything I said. And, together, combine to give some visibility to the sick and the conditions in which they live. These are occasions that give enthusiasm to those who work with volunteers, motivating. The important thing is to always remain a tool and initiatives do not become ends in themselves.

LUIGINA AMBROSE - The Loyalty 12.10.2010

.