Arnaud Gautelier, avec sa compagne Sandy Thomaré, vit avec la sclérose en plaques depuis 24 ans. Le couple a créée une association et il y a peu une application pour téléphone portable.

In Nantes, in cooperation with his association, Arnaud Gautelier helps patients with multiple sclerosis

It is a disease that we do not know its origin and what affects it About 110,000 people are in France. Most of them are women Each man has three women. Multiple sclerosis is an inflammatory disease of the central nervous system With lesions – plaques – myelin is destroyed, the sheath that protects nerve cells. Difficulties walking, swallowing, chronic fatigue, symptoms are numerous. The disease has many faces and develops differently from person to person. We don’t know how to treat it, but treatments make it possible to reduce symptoms and slow their progression.

“It fell on me like this, one morning, when I woke up with paralysis in the right part of my body, balance problems. It’s a shock, but we accept it,” Arno, who has had Sept. for 24 years.

Multiple sclerosis is generally diagnosed between the ages of 25-35. For Arnaud Gotelier, a resident of Nantes, who is 46 today, he would have been 22.. Then he moved to Paris, where he worked as an artistic director in the field of advertising: “elle m’est tombée dessus comme ça, un matin, en me levant avec une paralysie de la partie droite de mon corps, des problèmes d’équilibre. C’est un choc, mais on l’accepte. On n’a pas” the choice”.

Multiple sclerosis is a disease that develops with flare-ups of new symptoms or even exacerbation of existing symptoms but have been less significant so far. Very quickly, Arno’s daily life will be turned upside down. “There is fatigue and problems with walking, writing and co-ordination. When working it is complicated,” He explains. Especially since he is in an artistic environment, he needs his hands to draw.

Adapt, get information, surround yourself

In 2007, he left his post, and created the “My Sclerosis” association, of which he became a director and employee. He moved to Nantes in 2009 with his daughter and partner. tell This disease is often invisible and also mysterious “You can’t see that I’m sick, I’m walking normally, but on the other hand I have a limited walking distance. I have a wheelchair, it’s long distances. I’m lucky that I was able to walk at least 3 km. 10 years ago, I could walk 500 meters Only, we have no explanation for it.”

For him, the patient and his entourage have no choice but to adapt to each stage of the disease, a disease that develops in an unpredictable way. You also have to surround yourself. “It’s not just about the neurologist. There are a lot of health professionals out there to help patients. Patients often don’t know them well. There are pain doctors, physiotherapists, occupational therapists, speech therapists, and urologists.” In addition to motor problems, MS can also lead to joint problems, sexual problems, etc. For women there is also the issue of pregnancy.

To inform, support and listen to patients, Arnaud Gautelier created the Our Own Sclerosis Association. Since the beginning of 2022 there is also an application “My Life with Multiple Sclerosis”. A tool, a bond for both patients and loved ones. Sandi Thomari, Arno’s companion, accompanies him on these two tools but also on a daily basis: “But I’m not his nurse,” She says with a smile. She rejects the term “helper” stating that she does not have to help her get dressed or wash up. “But it’s true that I push the chair and do more housework when he’s tired.”

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Manage my choices

Like Arno, you conjure Advances in medicine with treatments that can reduce symptoms even furtherto slow progress. “There are fewer visible disabilities, and earlier.” And to remain optimistically: “Illness changes life prospects a lot, but at the same time I think you have to be in a certain flexibility, accepting things as they are, adapting, and when we are well together, when sickness gives you some relief, you have to live it 100%.”



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