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”.
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. 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 
uno dei motivi che fa dire no alla tracheotomia e quindi rinunciare alla vita. 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.
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
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
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