ALS is a rare pathology; the causes are unknown and there is no cure. Amyotrophic Lateral Sclerosis is a degenerative illness of the nervous system which is very difficult to diagnose: it is impossible to establish precisely how many people are afflicted in the world. In Italy there are between 3500 and 6000 patients. This disease completely paralyzes the body (average patient life span 3 years), sparing only the eyes used to communicate and the brain which maintains its functions 100%.
The majority of ALS cases become dramatic not only for the patients afflicted but also for the family who has to guarantee 24-hour a day medical assistance.
ALS patients want to live, but in Italy the State does little or nothing to help.
The cost of keeping an ALS patient alive is on average 100,000 euro per year; but a region such as Lombardia, considered to have one of the best health authorities in the country, guarantees a maximum of only 500 euro a month. Patients and their relatives have been asking for help for a long time and recently have started to make desperate attempts to attract public attention to their cause by going on hunger strikes and the like, such as the case of a 20-year old boy from Piedmont who advertised that he wanted to sell one of his kidneys to help his father.
In the meantime the Italian government still has not come to an agreement on the debate which began in 2009 when Beppino Englaro decided to suspend artificial life support for his daughter Eluana who had been in a coma for 17 years.
But also to those patients who ask to be able to survive with dignity, the Italian government is giving no concrete answers. Therefore, many ALS incurables who are unable to count on appropriate health care and are prisoners of their body but with full mental faculties, decide to refuse a tracheostomy (artificial respiration) which becomes necessary when their lungs stop working. By refusing this treatment they go towards a slow, painful death through suffocation. This story tells the daily life of four Italian families living with an ALS patient, their suffering, their dignity and their will to live. A Reportage by Alessandro Grassani.
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© / Gianna Besostri has been ill for 10 years. She lives together with her husband Carlo who assists her with loving care. Giovanna doing physiotherapy.
© / Gianna has been ill for 10 years. She lives together with her husband Carlo who assists her with loving care. Gianna with her husband at table, smoking a cigarette.
© / Gianna has been ill for 10 years. She lives together with her husband Carlo who assists her with loving care. Gianna with her husband at table.
© / She lives together with her husband Carlo who assists her with loving care. Gianna is visiting a neighbour.
© / Gianna lives together with her husband Carlo who assists her with loving care. Giovanna at the hairdresser near her house in Milano.
© / Gianna Besostri lives together with her husband Carlo who assists her with loving care. Giovanna going to the toilette helped by her part time nurse.
© / Giovanna and Carlo went shopping, she is waiting for Carlo who is parking the car at their own garage.
© / Giovanna Besostri is talking with a friend while her daughter Federica and Carlo are getting ready for Lunch.
© / Gianna Besostri lives together with her husband Carlo who assists her with loving care. Carlo helping Giovanna to eat.
© / Laughing Gianna Besostri.
© / Salvatore being washed by nurses.
© / Salvatore being washed by nurse.
© / Salvatore Usala, who is completely paralysed, using a transparent board dotted with black letters which his wife places between them so he can point at them with his eyes to form words and sentences.
© / A nurse takes care for Salvatore Usala.
© / Giuseppina putting her husband Salvatore in the wheelchair.
© / Usala Salvatore lives together with his wife Giuseppina who assists him with loving care.
© / Usala Salvatore in his bed.
© / Giuseppina and Saltore Usala on the airport on the way to Florence to meet another group of ALS patients.
© / Giuseppina and Saltore Usala on the plane to Florence to meet another group of ALS patients.
© / Giuseppina and Saltore Usala in a restaurant in Florence to meet an other group of ALS patients.
© / Giuseppina and Saltore Usala in Florence from Cagliari to meet another group of ALS patients.
© / Giuseppina Usala alone at the supermarket.
© / Home of the family Pinna. Giorgio (52 years old) has been ill from 19 years. He lives together with his wife Anna who assists him with loving care.
© / Anna Pinna with an old friend of the family.
© / Giorgio is the longest surviving ALS patient in Italy. Now he is only just able to move his eye muscles.
© / Anna and Bruna preparing dinner. Bruna has got Multiple Sclerosis and is an old family friend now living with them, to help Giorgio and Anna.
© / Anna Pinna shows a photo of her husband Giorgio when he was in the army.
© / Giorgio is the longest surviving ALS patient in Italy. Now he is only just about able to move his eye muscles. Anna assists Giorgio
© / Paolo an old friend coming back home with Giorgio after a day out.
© / Giorgio and Anna Pinna on a minibus driven by a friend, going to the beach to get some fresh air.
© / Georgio Pinna is the longest surviving ALS patient in Italy. Giorgio is getting on the plane going to Florence from Cagliari to meet another group of ALS patients.
© / Bruna, an old family friend have a look at Giorgio while Anna is in the toilette. Bruna has Multiple Sclerosis and is now living with them, to help Giorgio and Anna .
© / Stefania communicates with her husband, Cesare, who is completely paralysed, using a transparent board dotted with black letters which she places between them so he can point at them with his eyes to form words and sentences
© / A nurse takes care for Cesare Scoccimarro
© / Once a month some friends of Cesare come to visit him to play Risiko.
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© / Cesare und Stefania Scoccimarro .
© / A nurse takes care for Cesare Scoccimarro
© / Stefania Scoccimaro works at home to be able to stay close to her husband.