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“I’m not haughty, I have Parkinson’s”

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“I’m not haughty, I have Parkinson’s”

BELLUNO – He approaches the table: he has a slightly stiff step. Very slowly he takes off his sunglasses. And he puts the purse on the chair with more than calm gestures. Valentina Margio – Belluno, 38 years old – is not a lazy person. Behind the controlled movements is the Parkinson youth. “It is a disease, it is not a disease which means contagiousness”, she is keen to specify. In the editorial office, at the Gazzettino di Belluno, he comes from testimonial. He tells about himself so that the existence of an oddity is revealed, because this is how it is received by the people there illness Parkinson’s if you are not at least 60 years old: «My gripe is that people consider my way of moving haughty, while it is only necessarily measured. In reality I cannot act otherwise – says Valentina, adding – the image of the Parkisonian is that of an elderly man who is trembling and bent double. And no one understands, at first glance, what lies behind the calibrated movements of those affected by juvenile Parkinson’s ».

HISTORY

It was 2018. Valentina Margio, then 34, has a shoulder pain. And she realizes that she is struggling to move her right hand: «She tended to stay in a static position, and I practically didn’t use her. Gesticulating, as we all do, I realized that I was only moving the left ”. At a certain point she can no longer write. The general practitioner, Fabio Bortot to whom Margio is grateful, wants to see clearly, prescribes various tests for her. “Because the electromyography showed something wrong, and the tremor had an abnormal frequency for age.” Of course, diagnosing Parkinson’s is not easy, especially if you are just over 30 years old. Basically, only observation is needed. The definitive diagnosis is communicated to Valentina by Franco Ferracci, director of the Neurology department of the San Martino hospital in Belluno: «’You have Parkinson’s,’ she told me. In a moment I understood what she meant by the phrase “the world falls on me” ». The news had reached her only a month after the beginning of a new, important love with Massimo. “All the projects, which had the scent of spring, seemed to me to be suddenly buried.” Hospitalization, exams on exams between Belluno and Milan. Then, after a year with Massimo – now her husband – the good news: a baby is on the way. «It was immediately a joy which was followed by a great concern: I had to stop the drugs not compatible with pregnancy». After nine months Angelo arrives: «I immediately realized how difficult it was to do what all mothers do. For me, for example, it was a problem to change the diaper, I could not, impossible, then lullaby my baby as I was prevented from repetitive gestures ».

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THE WORK

Valentina Margio works in the city center as a saleswoman in a Tim center. “At work I have said nothing for a long time, hiding the great fatigue that is normal in illness. I had one thing: I wanted them to evaluate me in my professionalism. When they found out, they accepted me ». Here Valentina Margio, however, launches a javelin: «At the level of legislation, in recruitment, there is a void for juvenile Parkinson’s. More generally: health benefits only concern elderly Parkinsonians “.

TRA AIGP, VANITY FAIR, FRIDA

Valentina is keen to make known an unrecognized reality. «I started by writing a diary on the website of the Italian Parkinsonian Youth Association. They contacted me, then, asking me to offer my image, with shots by the photographer Giovanni Diffidenti, for a traveling exhibition entitled “Don’t call me disease” which is touring Italy, is now in Rome ». Then the interviews for various newspapers, one for all Vanity Fair. Valentina, in her battle, used facebook and instagram. In April 2022 you put your face, for World Parkinson’s Day, in small documentaries of the “Frida-women supporting women” Association. “In the beginning, to be honest, I wanted to avoid videos. You unlocked my thoughts of the submerged world of lonely, Parkinsonian people who don’t know who to ask for help ”.
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