Par
Laurene Fertin
Published on
Oct 17, 2024 at 10:37 a.m.
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Son big smile, between two punctuations, is enough to melt your heart. In her living room, seated in an armchair, Aude write down your thoughts at full speed on his tablet.
She is not like everyone else; she doesn’t use a pen. Achievement of Charcot’s diseasea neurodegenerative disease, Aude uses her big blue eyes to put your thoughts down digitally.
An unusual way to exchange; a tool that changes his life on a daily basis. “I don’t like to fit into boxes,” writes Aude with her eyes, with mischief. “Neither from illness, nor from doctors. But they know that. »
All in the eye
This comfort has not always existed since her illness was diagnosed in 2013. It is only since May that she has held this iPad tablet developed by Tobii Dynavox which allows it, thanks to eye controls, to write text messages, messages on WhatsApp, emails… In short, to maintain a conversation.
Concretely, Aude chooses, with his gaze that the tablet captureswords, letters, numbers or even special characters that allow it to write sentences.
Aude is silent: a few yes or no’s escape spontaneously sometimes, but it’s her eyes that do everything. From top to bottom, from left to right, his dexterity was transposed into his gaze.
And on the other side of the screen on which she writes, another, smaller, reveals the sentences that are formed as you go aimed at his or her interlocutor.
“I feel much better!” »
“I feel much better!” I feel free! », exclaims Aude through the screen.
Free to communicate, to dare to exchange with people who don’t know me. No more stress about not making myself understood. I can receive people while being alone.
It’s hard to be indifferent to his good humor. Aude had launched a prize pool at the start of the year, making it possible to raise a little more than 10 000 euros for purchasing this tablet. 151 people generously participated in this prize pool.
Today, with the pleasure she experiences chatting via screen, she wouldn’t do without this tool for anything in the world.
“The height for me”
Because losing the use of speech was in fact difficile. Local press correspondent, Aude also worked in the communication for many years before Charcot’s disease was forever recorded in his medical record.
“A shame”, for this mother of three children who had 44 ans when the news broke, at the time.
I sang a lot in choir choirs. I realized that I could no longer reach the high notes even when I was singing a nursery rhyme to my youngest daughter, 5 years old.
Hear consultations. The hammer blow falls. Charcot’s disease? She had never heard of it. It was unthinkable. Doctors give him between three and five years of life expectancy.
“I was stunned”
Charcot disease is a disease that attacks motor neurons (the neurons that transmit orders from the brain to the muscle, Editor’s note). The neurologist had to describe the disease to me, I didn’t even know it. I was stunned.
On the screen, Aude develops her remarks quickly. The words scroll. “It is a disease that is the least rare of rare diseases. We don’t know how it occurs except in hereditary cases, which is not my case. Hence the astonishment. »
If Aude does not speak clearly, and she no longer has full function of her arms and hands, she still retains a little energy in his body. “I still have strength in my knees,” she explains, “which allows me to put a little of my energy into transfers between the chair and the bed.”
A testimonial book
Aude maintains above all an overflowing and communicative enthusiasm. Although her eyes tire quickly in the evening, she devotes a good part of her time to writing a book.
Pushed by those around me, I started writing a book three years ago. Because these 11 years have been punctuated, beyond the illness and its consequences, with improbable encounters which have all brought me solutions.
She takes a break. “ These are coincidences that are not coincidences. I endure this ordeal thanks to the Catholic faith and for me, that changes everything,” smiles Aude, who, ultimately, with a little hindsight, has not lost her speech that much.
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