Sunday, November 28, 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.

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Saturday, November 20, 2010

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)
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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)
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Friday, November 19, 2010

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)
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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)
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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)
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Thursday, November 18, 2010

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)
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Sunday, November 14, 2010

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)
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Friday, November 5, 2010

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.




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Tuesday, November 2, 2010

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.