On February 26, 2019, the ax fell. Emmanuelle Squarzoni puts words to her paralysis in her right shoulder which punctuates her daily life. At the age of 38 and after many tedious medical examinations, she learns that she has a parkinsonian syndrome. Mother of two dynamic boys, loving wife, the 30-year-old worked as a municipal employee. Much more than a job, a real priesthood.
This chronic neurodegenerative and progressive condition is characterized by the disappearance of certain neurons. Certainly. But the symptoms aresly“and at the beginning”almost imperceptible“, underlines the Pennoise. “They are not just tremors, they are multiple and specific to each patient: stiffness, fatigue, loss of balance, cognitive and psychological disorders, sleep and many others.“Yet disconcertingly humble and often described as “superhuman” by those around her, Emmanuelle continues to work to lead a so-called “normal” life. The mornings are difficult on a daily basis and fatigue sets in after too intense efforts. But the mother of the family, now 42 years old, does not not let it invade. In 2022, despite the sometimes paralyzing crises of dyskinesia, she decided to create an association: Une Main pour Parkinson. Why? “To live with is to live with an unwanted roommate, impossible to part with. It makes you live with two sufferings: mental and physical. He chuckles with pleasure when in the morning he prevents me from getting up. He does not take away any of my intellectual abilities so that you can better see the physical decline towards which he leads me day after day.“, she confides. This association will “put words, explain and push research“. Live with it, therefore. Without falling into misery. Never. Even if, “in public, I have to assume the situation, the questioning, sympathetic or rejection looks, these are the hardest to accept given my age. Once we accept all this, we experience the symptoms differently: I have to think about any action I want to do, because my brain no longer receives and no longer responds automatically. You have to think and concentrate to get the desired gesture with delay.”
Today, hope points the tip of his nose. In 2022, Emmanuelle agrees to live with a pump injecting treatment. After a battery of tests, she learns that she is eligible for the operation. “Even if no treatment can limit the evolution of the disease“, she explains. The pacemaker that will be implanted has a lifespan of about 25 years. “What will happen to me in 25 years? I will be 67 years old. A doctor told me that you have to believe in research and hope that it progresses. This sentence resonated in my head and today it has become my fight.” And the association will act in this direction: “Help research“. For now, the only course to take.
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