di orsatosta e mresciani :
All'indomani della notizia, diffusa nelle settimane scorse, che il fondo destinato alla ricerca sulla Sla, invece di 100 milioni sarà a discrezione del legislatore (decreto milleproroghe), quindi una cifra "fino a" 100 milioni, abbiamo fatto qualche domanda a Salvatore Usala, che si presenta così: " Sono nato a Cagliari, perito chimico industriale, lavoro 5 anni nell'industria e poi entro nel mondo della scuola come assistente tecnico di chimica e informatica. Nel 2004 i primi sintomi della SLA, crampi, gambe rigide, movimenti impacciati. In early 2005, diagnosis, and SLA, June 2008, and I can not swallow the PEG, December 2008, respiratory failure and do the trach.
In the meantime, I retired in January 2008, from January 2009 I decided to fight bitterly, I dedicate myself to things as diverse started a new life .
Hello Salvatore. The first video testimony about you, found on the web, was in 2009, is a service of Videolina , announcing the start of the hunger strike as a form of protest against the silence of the institutions. tell us how was the situation at the time a patient Sla?
Sardinia has been an unprecedented development of home with the Assessor Nerina Diridin that gave legs to the law 162 and introduced the project "Back Home" dedicated to the most serious, many ALS patients have come out of intensive care and went home, was an irreversible process that led us to struggle to get assistance 24 hours. Not everyone in Italy have adequate care, abandonment and despair reign supreme, this reality has started a hunger strike and letters to the then deputy minister because he did Fazio measures in this respect.
You had submitted a draft of continuous home care, financial plan and also accompanied with the beautiful proposal formazione di personale specifico addetto all'assistenza. Vuoi raccontarci com'è iniziato tutto?
Tutto è iniziato col fatto che non è pensabile avere un infermiere 24 ore al giorno, per evidenti carenze di organico e per costi proibitivi, parliamo di 600€ al giorno, il progetto prevede assistenza con assistenti familiari assunti direttamente dalla famiglia e coordinati e formati da un infermiere di rianimazione. I costi scenderebbero a 250€, più o meno la retta che la regione paga ad una RSA, pochi costi aggiuntivi ed un'assistenza di 24 ore che fa risparmiare sui ricoveri in rianimazione che costano 1.800€ al giorno.
Arriviamo al 2010: il 21 giugno, ricorrenza del global Day per la Sla eri, with patients across Italy ahead of Deputies, and then again in July, yet the garrison in the same place. replied the Hon. Gianni Letta who said "From today I will your garrison." What happened then?
E 'was a joke typical of vulgar politicians, Hon. Letta never did anything and the delegation headed by Melazzini, President AISLA and Barbieri, President Fish, contented himself with vague promises from the garrison of this farce was born Nov. 16 to much more content that led to the decree of 100 million. The deputy
Fazio has never received one of your delegation? What were his answers, and then his commitment as a representative Italian Health about your bodies?
Fazio Deputy Minister invited us to visit the National neuromuscular diseases, has responded to our repeated requests with specific commitments publicly, the facts did nothing, the Italian ministers are nothing, it all depends on who has the cash Minister Tremonti in hand and does not authorize anything.
the central government, in the end, the result was the appropriation of 100 million for care and research, but money taken from the bottom of 5X1000 and whose use is unclear, there was also the question of the LEA and the tariff nomenclature ....
We had obtained 100 million in the law of stability, 5x1000 was 100 million and in a separate chapter, with the decree milleproroghe Minister Tremonti has made a poor thing, she shuffles the cards to save money by opening a war among the poor, the result was painful because they have seen as privileged ALS patients who took contributions vital to the world of volunteerism. As for the new LEA and the tariff nomenclature, not because nobody wants it costs 800 million, and neither the government nor the regions want to shoulder the expense.
regional dimension, however, your Sardinia, the situation has prompted more battles: from January 2010 as the Department of Health Liori Anton Angelo withdrew the plan / project that you drafted, saying it was "Deal ".....
The commissioner has not watched the draft proposed by the Regional Commission SLA, we understand the meeting following the rally of December 16, going into the organization's social health is complex and dr. Liori had no intention of stressing to find solutions. We asked for and obtained a reinforcement of the return home of 1.5 million dedicated to patients with neurodegenerative diseases in assisted ventilation for 24 hours, ultimately leading to additional € 18,000 € Sardinia as a virtuous example for these patients is extremely severe.
is not a contradiction in a country where the political debate on right to life and thus its protection is always been harsh, you have several times had to put at risk your health to make you listen? The recipients of your request does not raise the issue? You how you feel?
It 'a shame, all fill their mouths and praise of life and its sacredness, in fact destructive hypocrisy and bigotry is bogus, in Italy 80% of ALS patients refused tracheostomy are 800 deaths a year, many of them decide to die for not weigh on the family because of the lack of assistance. We will not give up, we want a life worthy of a civilized country.
Have you ever thought of taking legal action denouncing the discrimination to which you object?
E 'a opzione che non abbiamo considerato perchè ci piace la lotta politica per sensibilizzare l'opinione pubblica del malgoverno, oramai tutte le famiglie hanno problemi di disabilita più o meno grave, le battaglie si devono fare per crescere, la magistratura va coinvolta solo in caso di reati gravi di malasanità.
Ci racconti una tua giornata tipo?
Alle 8 sveglia e lettura della posta, giornali, forum e siti di interesse, dalle 9 alle 11 igiene, barba e medicazioni con gli infermieri. Dalle 11 fisioterapia e riprendo il comunicatore oculare e riprendo a navigare e rispondere alle mail urgenti. Da mezzogiorno sino a mezzanotte l'una lavoro incessantemente per non avere arretrati, posta, progetti, forum, lettere, battaglie, insomma non mi annoio. Ogni tanto esco per necessità o svago, non è possibile farlo spesso perchè i preparativi sono laboriosi e il bagaglio al seguito rilevante. La tv la seguo poco, telegiornali, qualche film ed attualità, in ogni caso riesco a scrivere guardando un film o una partita.
Quanti sono i malati di Sla in Italia?
Sono circa 5.000 ma non esiste un censimento certificato.
All'indomani della notizia, diffusa nelle settimane scorse, che il fondo destinato alla ricerca sulla Sla, invece di 100 milioni sarà a discrezione del legislatore (decreto milleproroghe), quindi una cifra "fino a" 100 milioni, abbiamo fatto qualche domanda a Salvatore Usala, che si presenta così: " Sono nato a Cagliari, perito chimico industriale, lavoro 5 anni nell'industria e poi entro nel mondo della scuola come assistente tecnico di chimica e informatica. Nel 2004 i primi sintomi della SLA, crampi, gambe rigide, movimenti impacciati. In early 2005, diagnosis, and SLA, June 2008, and I can not swallow the PEG, December 2008, respiratory failure and do the trach.
In the meantime, I retired in January 2008, from January 2009 I decided to fight bitterly, I dedicate myself to things as diverse started a new life .
Hello Salvatore. The first video testimony about you, found on the web, was in 2009, is a service of Videolina , announcing the start of the hunger strike as a form of protest against the silence of the institutions. tell us how was the situation at the time a patient Sla?
Sardinia has been an unprecedented development of home with the Assessor Nerina Diridin that gave legs to the law 162 and introduced the project "Back Home" dedicated to the most serious, many ALS patients have come out of intensive care and went home, was an irreversible process that led us to struggle to get assistance 24 hours. Not everyone in Italy have adequate care, abandonment and despair reign supreme, this reality has started a hunger strike and letters to the then deputy minister because he did Fazio measures in this respect.
You had submitted a draft of continuous home care, financial plan and also accompanied with the beautiful proposal formazione di personale specifico addetto all'assistenza. Vuoi raccontarci com'è iniziato tutto?
Tutto è iniziato col fatto che non è pensabile avere un infermiere 24 ore al giorno, per evidenti carenze di organico e per costi proibitivi, parliamo di 600€ al giorno, il progetto prevede assistenza con assistenti familiari assunti direttamente dalla famiglia e coordinati e formati da un infermiere di rianimazione. I costi scenderebbero a 250€, più o meno la retta che la regione paga ad una RSA, pochi costi aggiuntivi ed un'assistenza di 24 ore che fa risparmiare sui ricoveri in rianimazione che costano 1.800€ al giorno.
Arriviamo al 2010: il 21 giugno, ricorrenza del global Day per la Sla eri, with patients across Italy ahead of Deputies, and then again in July, yet the garrison in the same place. replied the Hon. Gianni Letta who said "From today I will your garrison." What happened then?
E 'was a joke typical of vulgar politicians, Hon. Letta never did anything and the delegation headed by Melazzini, President AISLA and Barbieri, President Fish, contented himself with vague promises from the garrison of this farce was born Nov. 16 to much more content that led to the decree of 100 million. The deputy
Fazio has never received one of your delegation? What were his answers, and then his commitment as a representative Italian Health about your bodies?
Fazio Deputy Minister invited us to visit the National neuromuscular diseases, has responded to our repeated requests with specific commitments publicly, the facts did nothing, the Italian ministers are nothing, it all depends on who has the cash Minister Tremonti in hand and does not authorize anything.
the central government, in the end, the result was the appropriation of 100 million for care and research, but money taken from the bottom of 5X1000 and whose use is unclear, there was also the question of the LEA and the tariff nomenclature ....
We had obtained 100 million in the law of stability, 5x1000 was 100 million and in a separate chapter, with the decree milleproroghe Minister Tremonti has made a poor thing, she shuffles the cards to save money by opening a war among the poor, the result was painful because they have seen as privileged ALS patients who took contributions vital to the world of volunteerism. As for the new LEA and the tariff nomenclature, not because nobody wants it costs 800 million, and neither the government nor the regions want to shoulder the expense.
regional dimension, however, your Sardinia, the situation has prompted more battles: from January 2010 as the Department of Health Liori Anton Angelo withdrew the plan / project that you drafted, saying it was "Deal ".....
The commissioner has not watched the draft proposed by the Regional Commission SLA, we understand the meeting following the rally of December 16, going into the organization's social health is complex and dr. Liori had no intention of stressing to find solutions. We asked for and obtained a reinforcement of the return home of 1.5 million dedicated to patients with neurodegenerative diseases in assisted ventilation for 24 hours, ultimately leading to additional € 18,000 € Sardinia as a virtuous example for these patients is extremely severe.
is not a contradiction in a country where the political debate on right to life and thus its protection is always been harsh, you have several times had to put at risk your health to make you listen? The recipients of your request does not raise the issue? You how you feel?
It 'a shame, all fill their mouths and praise of life and its sacredness, in fact destructive hypocrisy and bigotry is bogus, in Italy 80% of ALS patients refused tracheostomy are 800 deaths a year, many of them decide to die for not weigh on the family because of the lack of assistance. We will not give up, we want a life worthy of a civilized country.
Have you ever thought of taking legal action denouncing the discrimination to which you object?
E 'a opzione che non abbiamo considerato perchè ci piace la lotta politica per sensibilizzare l'opinione pubblica del malgoverno, oramai tutte le famiglie hanno problemi di disabilita più o meno grave, le battaglie si devono fare per crescere, la magistratura va coinvolta solo in caso di reati gravi di malasanità.
Ci racconti una tua giornata tipo?
Alle 8 sveglia e lettura della posta, giornali, forum e siti di interesse, dalle 9 alle 11 igiene, barba e medicazioni con gli infermieri. Dalle 11 fisioterapia e riprendo il comunicatore oculare e riprendo a navigare e rispondere alle mail urgenti. Da mezzogiorno sino a mezzanotte l'una lavoro incessantemente per non avere arretrati, posta, progetti, forum, lettere, battaglie, insomma non mi annoio. Ogni tanto esco per necessità o svago, non è possibile farlo spesso perchè i preparativi sono laboriosi e il bagaglio al seguito rilevante. La tv la seguo poco, telegiornali, qualche film ed attualità, in ogni caso riesco a scrivere guardando un film o una partita.
Quanti sono i malati di Sla in Italia?
Sono circa 5.000 ma non esiste un censimento certificato.
Cosa vorresti dire alle persone che non conoscono la Sla?
Che è una malattia devastante, sei bloccato completamente, ti alimenti tramite un tubo inserito nello stomaco, respiri tramite un respiratore automatico, non puoi comunicare ma hai un cervello integro e funzionante. The majority of patients fall into depression and let themselves go, personally I live well because I found a reason to live, the struggle for civilization. Fortunately we have communicators eye that allow us to interact with the world.
Who has shown solidarity and joined to you? Many
, we found lot of solidarity, journalists, politicians, ordinary citizens, colleagues, relatives, friends, I write so many unknown people who want to give us a contribution only symbolic but also very welcome. In a period of loss of values \u200b\u200band morality, see Disabled serious challenge from the weather and the suffering evokes mythical memories, we are not heroes but we want to win the war per la vita.
Chi volesse contattarvi?
Viva la Vita Sardegna ONLUS , via Nerva 20 09043 Monserrato (CA) vivalavitasardegna@tiscali.it
Che è una malattia devastante, sei bloccato completamente, ti alimenti tramite un tubo inserito nello stomaco, respiri tramite un respiratore automatico, non puoi comunicare ma hai un cervello integro e funzionante. The majority of patients fall into depression and let themselves go, personally I live well because I found a reason to live, the struggle for civilization. Fortunately we have communicators eye that allow us to interact with the world.
Who has shown solidarity and joined to you? Many
, we found lot of solidarity, journalists, politicians, ordinary citizens, colleagues, relatives, friends, I write so many unknown people who want to give us a contribution only symbolic but also very welcome. In a period of loss of values \u200b\u200band morality, see Disabled serious challenge from the weather and the suffering evokes mythical memories, we are not heroes but we want to win the war per la vita.
Chi volesse contattarvi?
Viva la Vita Sardegna ONLUS , via Nerva 20 09043 Monserrato (CA) vivalavitasardegna@tiscali.it
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Foto: Salvatore insieme alla moglie Giosy, tratta dal sito di Viva La Vita Onlus
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