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Personal Experience

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My story before and after the (fucking) ALS

Language: English
Country: Italy
Typology: patients and relatives
Vittorino, born at Longarone on 05/05/1946. Since I was a boy, I liked sports like cycling and football, hobbies that I have practised up to forty years old. I began to work in 1962, at sixteen years old, at the Cravetto Foundry in Settimo, and then in other Foundries in Fano (Marche) and then in the area of Bergamo and Lecco. Until 2003 I carried out various tasks and then the long-awaited retirement age arrived. Since I had more free time, I could spend more time playing tennis, riding and, since I was born in the mountains, going on excursions in the mountains. It was precisely during one of these walks that I perceived the first symptoms of the disease: I often stumbled with my left foot, but I did not pay attention to it… I thought: "I’m only tired"… on another occasion, while I was shaping small wooden sculptures (another hobby of mine), I realized I could no longer grasp things with my hand… in this case I could not attribute it to tiredness, so I talked to my wife, and together we decided to look into the matter. I began with blood tests and neurological visits. After a hospitalization period of four/five days at the Hospital in Zingonia (BG), the outcome was ALS or Motor Neurone Disease. I underwent further neurological visits to obtain confirmation: even doctors were not too sure, given the seriousness of the diagnosis… neither my wife nor I knew much about the disease: we had heard some news on the Welby case, for example, but nothing more. I decided to move to Settimo because my daughter, my mother-in-law and my brother lived there, and they could help my wife. In Bergamo I left a piece of my heart, my son and my daughter-in-law. The onset of the disease was fast. I was cared for by doctors at the Molinette and at the San Luigi in Orbassano. At the Molinette I was proposed to undergo a trial test with Lithium, which might perhaps stop or slow down the disease, which I interrupted after about six months because there was no result. I soon got worse: first I lost the ability to speak and then the use of arms and legs, breathing was low and I had to make use of the fan with mask, I was assisted by the family doctor and nurses of the ASL (Local Health Authority) in Settimo. Then, I got pneumonia and I was hospitalized at the San Luigi in Orbassano in February 2009. Respiratory crises were increasingly frequent and in April I agreed to undergo tracheotomy, but with little hope to be able to return to breathe again… I saw it as a necessary temporary solution to overcome that period, but only temporarily… in the end, unfortunately, I had to give in. In July I was discharged. Once returned home, taking care of me became increasingly burdensome: managing a sick with ALS is not simple, because, on the one hand, there is my inability to immediate express what I feel (and making oneself understood through grimaces or through the alphabet device is not so easy), not to mention the therapies, the need for hygiene, the fact of dealing with a defenceless and immobilized body. It was not easy for my family. My wife, who has cared for me day and night since the beginning of all my tragedy, has become depressed. The ASL has provided us with nurses for our daily and weekly needs, then we had to employ a carer day and night, until my wife deteriorated to the point that she needed to be admitted to a specialized centre. It was no longer possible for me to remain at home so, thanks to the help of Dr. X of the ASL in Settimo, I could be hospitalized at the rest home La Cittadella di Saluggia. I was deeply concern: when you are surrounded by family members who love you, you feel differently… you feel safe… almost pampered… not to mention the fact that my wife and my children had been really present in this new stage of my life. Well, I was in that rest house, where I was the first guest affected by ALS, other patients had other illnesses such as multiple sclerosis, Alzheimer's Disease and so on. The staff had to learn how to manage a new pathology for them as well… and I have sort of worked as a guinea pig. Now, after almost two years of hospitalization with new nurses and social workers, we reached a reasonable level, even if we have gone through critical moments. People with my same disease and other patients need a larger number of doctors, nurses and social workers prepared at national level and this is what we all expect from our health care system. I send a heartfelt thank you to all those who have been close to me, Vittorino

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