Due chiacchiere con...Simone Fanti - Chitchatting with...Simone Fanti
Simone Fanti è un giornalista che dieci anni fa, dopo un incidente di moto, è rimasto paraplegico. Ma dopo molti anni in posizione seduta, ha potuto rialzarsi grazie a una nuovissima tecnologia chiamata Rewalk: un esoscheletro controllato da un computer che permette a chi non è in grado di camminare di alzarsi in piedi e farlo! Tutti i dettagli li trovate qui, ma a me, ovviamente interessava sapere direttamente da lui come ha vissuto e sta vivendo questa esperienza, per cui l'ho contattato e....gliel'ho chiesto! Ecco la nostra breve chiacchierata:
Simone, Come sei stato scelto per la
sperimentazione?
Quasi per
caso. Sono venuto a conoscenza di questa sperimentazione perché stavo scrivendo
un articolo per il Corriere della Sera. Ho chiamato per fissare un incontro a
fine agosto per un’intervista a Manuela Migliaccio, la ragazza mielolesa che
per prima con il Rewalk ha fatto una maratona di 5 chilometri in Italia. E’ stato allora che ho conosciuto il primario
del centro di riabilitazione di Villa Beretta a Costa Masnaga (Lc), Franco
Molteni con cui dopo l’intervista, mi
sono fermato a fare due chiacchiere. Ero incuriosito dal progetto e così
Molteni mi ha proposto, previo una serie di visite e esami per verificare
l’idoneità, di partecipare a questa sperimentazione. Il personale medico era
interessato a testare il Rewalk su una persona con undici anni di sedia a
rotella alle spalle (gli undici precedenti candidati avevano tutti lesioni più
recenti). Io ho accettato.
Ti saresti mai immaginato, cinque
anni fa, di poterti rialzare in piedi grazie alla tecnologia?
Quando
undici anni fa mi dissero che non avrei più potuto camminare fu uno shock. Ma
mentalmente fissai in dieci anni l’appuntamento con un ipotetico rimedio
scientifico per la mia paraplegia. Il tempo passa e le tanto discusse
staminali, la mia prima fonte di speranza, non hanno ancora dato i risultati
sperati. Un anno fa ebbi la bruttissima sensazione del fallimento proprio
quando mi accorsi che una decade era passata e i ricercatori non avevano ancora
trovato un rimedio. Oggi mi prendo la rivincita se così si può dire.
L’esoscheletro che sto provando non è certo la risoluzione dei miei problemi di
movimento, ma senza dubbio è un “passo” verso una mobilità e una deambulazione
più agevole.
Cosa si prova ad essere un pioniere
di ciò che cambierà la vita a migliaia di persone con disabilità?
E’
emozionante anche se preferisco rimanere con i piedi ben piantati per terra
(forse nel mio caso sarebbe più giusto parlare di ruote piantate per terra).
Sono tante le sensazioni che sto vivendo: positive, come la sensazione di stare
in piedi e negative, come la malinconia e il pensiero che l’esoscheletro non mi
restituisce una completa autonomia e non mi affranca dalla condizione di
disabile. Fatico a pensarmi come un pioniere... sono uno dei tanti che stanno
prestandosi a questa prova, ma che ne traggono anche dei vantaggi. Possiamo rivivere queste sensazioni
e chissà, magari per coloro che si adatteranno completamente al robot
proseguire con la sperimentazione anche nella vita reale. Il Rewalk è infatti
acquistabile (per il momento non in convenzione con il Sistema Sanitario
Nazionale).
Come si svilupperà il tutto nei mesi
avvenire: l’apparato va modificato in qualche modo e tu dovrai fare esercizi
specifici?
Step by
step è il caso di dire. Dopo la fase di analisi mediche approfondite abbiamo
iniziato il training. Già il primo giorno, come per magia il robot mi alza in
piedi. Sulle prime è fondamentale che controlli il mio stato fisico e abitui il
mio corpo alla nuova postura. La seconda fase è quella in cui si recupera il
senso dello spazio e quindi l’equilibrio dopo un paio di sedute. La terza fase
è il cammino vero e proprio, quasi barcollando si sposta il peso da un piede
all’altro e il robot completa il passo al posto dei muscoli. Sembra semplice ma
non lo è. Avrei dovuto iniziare il training già a fine settembre, ma il Rewalk
in dotazione era troppo piccolo per la mia statura, è stato necessario
attenderne un modello più grande e potente adeguato al mio metro e 85
abbondante.
Pensi che sarà possibile una distribuzione
del sistema a chi lo desidera?
Il Rewalk è
un ottimo sistema riabilitativo, ma dubito possa sostituire completamente la
sedia a rotelle. Non lo si può indossare per tutto il giorno e impegna le mani
che servono per gestire l’apparecchio. Credo che alcuni paraplegici, chi ha ad
esempio una lesione del midollo molto bassa, ne potranno trarre grandi
giovamenti e utilità. Chi come me ha una lesione alta, invece dovrebbe comunque
essere aiutato e accompagnato negli spostamenti. Per il momento il Rewalk-p è in vendita al
prezzo di 50 mila euro (una carrozzina elettrica ne costa 30/35 mila) che
comprende una ventina di lezioni per imparare ad usarlo. La società che lo
importa sta facendo le procedure necessarie per inserirlo nel nomenclatore tariffario,
facendo sì che venga anche parzialmente passato dal Sistema Sanitario Nazionale.
Insomma, forse non è ancora il momento di cantare vittoria, ma questo è decisamente un grande passo per riavvicinare le persone diversamente abili a una migliore autonomia! Ringrazio Simone per la disponibilità!
Simone Fanti is a journalist who ten years ago, after a motorcycle accident, bacame paraplegic. But
after many years in a sitting position, he could stand up thanks to a new
technology called ReWalk: an exoskeleton controlled by a computer that
allows people who are not able to walk to stand up and do it! All
the details can be found here (and here for the English speakers) but I obviously wanted to know directly from him how
he has lived and is living this experience, so I contacted him and asked
him... Here is our brief chat:
Simone, how have you been chosen for the trial?Almost by accident. I learned of this trial because I was writing an article for the Corriere della Sera newspaper. I called to arrange a meeting in late August for an interview with Manuela Migliaccio, a girl with a spinal cord injury who first performed a 5 km marathon in Italy with ReWalk. That 's when I met the chief of the rehabilitation center of Villa Beretta Costa Masnaga (Lc), Franco Molteni, whith whom, after the interview, I stopped for a chat. I was intrigued by the project and so Molteni asked me, after a series of medical exams and tests to verify my eligibility, to participate in this trial. The medical staff was interested in testing the ReWalk on a person with eleven years of wheelchair behind (the eleven previous candidates had all be recently injured ). I accepted.
Simone, how have you been chosen for the trial?Almost by accident. I learned of this trial because I was writing an article for the Corriere della Sera newspaper. I called to arrange a meeting in late August for an interview with Manuela Migliaccio, a girl with a spinal cord injury who first performed a 5 km marathon in Italy with ReWalk. That 's when I met the chief of the rehabilitation center of Villa Beretta Costa Masnaga (Lc), Franco Molteni, whith whom, after the interview, I stopped for a chat. I was intrigued by the project and so Molteni asked me, after a series of medical exams and tests to verify my eligibility, to participate in this trial. The medical staff was interested in testing the ReWalk on a person with eleven years of wheelchair behind (the eleven previous candidates had all be recently injured ). I accepted.
Would have you ever imagined five years ago, to be keen to raise up thanks to technology?
When eleven years ago I was told that I could no longer walk I was in shock. But mentally I made an appointment with a hypothetical scientific remedy for my paraplegia in ten years. Time passes and the much-discussed stem cells, my first source of hope, have not yet yielded the expected results. A year ago I had a very bad feeling of failure at a time when I realized that a decade had passed and the researchers had not yet found a remedy. Today I take my revenge if I may say so. The exoskeleton that I'm trying is not solving my problems of motion, but without doubt it is a "step" towards a mobility and easier walking.
How does it feel to be a pioneer of something that will change the lives of thousands of people with disabilities?
It 's exciting although I prefer to keep my feet firmly on the ground (perhaps in my case it would be more correct to speak of wheels...). There are so many feelings that I am experiencing: positive, like the feeling of standing and negative, such as the gloom, and the thought that the exoskeleton does not give me a completely independency and doesn't prevent me from being disabled. I struggle to think of myself as a pioneer ... I'm just one of the many who are lending themselves to this test, but they also get benefits. We can relive these feelings and who knows, maybe those who will adapt completely to the robot will proceed with the trial in real life. The ReWalk is in fact on sale (even if not in agreement with the National Health System).
How will all this go on in the future: the system should be adapted in some way and do you need to do specific exercises?
Step by step we should say. After the medical testing phase we started the training. On the first day, as if by magic the robot makes me stand up. At first it is crucial to check up my physical condition and my body needs to get used to the new posture. The second phase is the one in which my body retrieves the sense of space, and then the balance, after a couple of sessions. The third phase is the actual walking one: almost staggering you shifts your weight from one foot to the other and the robot completes the step instead of muscles. It sounds simple but it is not. I should have started the training at the end of September, but the supplied ReWalk was too small for my height, it was necessary to wait for a larger, more powerful model suitable for my height of 185 cm.
Do you think it will be possible to distribute the system to anyone who needs it?
The ReWalk is an excellent rehabilitation system, but I doubt it can totally replace the wheelchair. It can not be worn all day and it engages both hands, which are used to manage the device. I think some paraplegics, such the ones with a very low spinal injury, can achieve great benefits from it. Anyone who has a high lesion, like mine, should still be helped and accompanied on the move. For the moment the ReWalk-p is on sale at the price of EUR 50 thousand (an electric wheelchair costs 30/35 thousand) which includes twenty lessons to learn how to use it. The company that imports it is setting up the necessary procedures to insert it in the tariff nomenclature, ensuring that it is also partly spent on the NHS.
Well, maybe it is not yet time to declare victory, but this is definitely a big step to give people with disabilities a better autonomous life! Thanks to Simone for his kindness.
When eleven years ago I was told that I could no longer walk I was in shock. But mentally I made an appointment with a hypothetical scientific remedy for my paraplegia in ten years. Time passes and the much-discussed stem cells, my first source of hope, have not yet yielded the expected results. A year ago I had a very bad feeling of failure at a time when I realized that a decade had passed and the researchers had not yet found a remedy. Today I take my revenge if I may say so. The exoskeleton that I'm trying is not solving my problems of motion, but without doubt it is a "step" towards a mobility and easier walking.
How does it feel to be a pioneer of something that will change the lives of thousands of people with disabilities?
It 's exciting although I prefer to keep my feet firmly on the ground (perhaps in my case it would be more correct to speak of wheels...). There are so many feelings that I am experiencing: positive, like the feeling of standing and negative, such as the gloom, and the thought that the exoskeleton does not give me a completely independency and doesn't prevent me from being disabled. I struggle to think of myself as a pioneer ... I'm just one of the many who are lending themselves to this test, but they also get benefits. We can relive these feelings and who knows, maybe those who will adapt completely to the robot will proceed with the trial in real life. The ReWalk is in fact on sale (even if not in agreement with the National Health System).
How will all this go on in the future: the system should be adapted in some way and do you need to do specific exercises?
Step by step we should say. After the medical testing phase we started the training. On the first day, as if by magic the robot makes me stand up. At first it is crucial to check up my physical condition and my body needs to get used to the new posture. The second phase is the one in which my body retrieves the sense of space, and then the balance, after a couple of sessions. The third phase is the actual walking one: almost staggering you shifts your weight from one foot to the other and the robot completes the step instead of muscles. It sounds simple but it is not. I should have started the training at the end of September, but the supplied ReWalk was too small for my height, it was necessary to wait for a larger, more powerful model suitable for my height of 185 cm.
Do you think it will be possible to distribute the system to anyone who needs it?
The ReWalk is an excellent rehabilitation system, but I doubt it can totally replace the wheelchair. It can not be worn all day and it engages both hands, which are used to manage the device. I think some paraplegics, such the ones with a very low spinal injury, can achieve great benefits from it. Anyone who has a high lesion, like mine, should still be helped and accompanied on the move. For the moment the ReWalk-p is on sale at the price of EUR 50 thousand (an electric wheelchair costs 30/35 thousand) which includes twenty lessons to learn how to use it. The company that imports it is setting up the necessary procedures to insert it in the tariff nomenclature, ensuring that it is also partly spent on the NHS.
Well, maybe it is not yet time to declare victory, but this is definitely a big step to give people with disabilities a better autonomous life! Thanks to Simone for his kindness.
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