Charcot’s disease: the fight of a local child who has become “Invincible”

Home Charcot’s disease: the fight of a local child who has become “Invincible”
Written by Doug Hampton

the essential
In France, 1,000 to 1,500 people learn each year that they have Charcot’s disease, a pathology which begins on average at 55-60 years of age and which affects 1.5 men for 1 woman. Among them, Ludovic, who draws his strength from his Aveyron roots.

Ludovic Besombes is 48 years old and lives in Paris where he works as a chartered accountant. Even if he was born at the gates of the capital, a stone’s throw from the “Paris-Neuilly” café of his maternal grandparents, “I am more than ever a child of the country”, he underlines, proud of to be from Aveyron.

His mother, a descendant of a family of beginners, was born in Cantoin and it was the village of Huparlac that saw the birth of his father, the son of brave local peasants. Also, he likes to say that he is the mixture of these two Aveyron worlds.

His wife, Clarisse, has Aveyron blood through her father whose parents, from Saint-Saturnin-de-Lenne, ran the brasserie “Les Trois Portes” in Paris. Together, they have two children aged 16 and 18 who fill them with happiness. He knows North Aveyron like the back of his hand.

The child of the country

His ancestors all uttered their last death rattle there and he spent all his vacations there. Swimming at Lake Saint-Gervais, the August 15 festivities at Saint-Amans-des-Cots, the “aligot-sausage” evenings at Saint-Symphorien-de-Thénières, the agricultural fairs at Laguiole, diving in the swimming pool of Sainte-Geneviève-sur-Argence,… Like so many summer memories that marked his childhood memory forever.

But one sad day in February 2018, following a series of medical examinations echoing muscle weakness felt in his left leg, his life changed at 42 years old.

A life prevented overnight

The verdict is final: he has ALS (Amyotrophic Lateral Sclerosis), known as Charcot’s disease. It resonates in him like a blow. He had never heard of this disease until now.

Science does not know the causes. Thus, his neurologist teaches him with a certain coldness that it is a degenerative and fatal neuromuscular pathology characterized by the progressive death of motor neurons which control walking, speaking, swallowing and breathing. This loss of motor neurons also leads to muscle atrophy and progressive paralysis in patients.

Today, his body is completely paralyzed (only his thumbs still move timidly). He lost the use of voice and smell. He breathes through a tracheostomy and is fed through gastronomy. Communication is only possible thanks to a screen associated with an “Eye Tracker” device which not only allows him to write with his eyes but also reproduces his voice in a synthesized way.

Live in emergency

However, despite his condition, Ludovic explains that “paradoxically, the fact of living in a hurry has allowed me to appreciate the true value of the simple things in life. I have only one regret, that of to have had to fall ill to open his eyes”.

From now on, two quotes characterize his fight against the disease and his state of mind: “You never know how strong you are until the day when being strong remains your only option”, by Robert Nesta Marley, says Bob Marley.

And: “I’m going to die faster than the others, it’s a fact, but that doesn’t prevent me from being happy”, by Olivier Goy, whose fight against illness was brought to the screen in a film released in theaters on May 31, 2023.

An inspiring encounter

Olivier Goy precisely. Let’s talk about it. It is this illustrious co-combatant who woke up Ludovic three months ago, after five years of a long sleep, thanks to social networks.

For him, “Olivier Goy has become a source of inspiration for the sick Charcot that I am. He taught me to dare to love life even if it condemns us and to never give up being happy despite illness and disability. The one who became my friend after an invincible meeting organized by my wife is an alchemist who, failing to change lead into gold, transforms grimaces into smiles”.

Today, aware of the ultimate deadline that awaits him, Ludovic says he is “no longer afraid, neither of death, nor of the distorted image” that the disease sends back to him. He feels the need to talk about her and contribute at his level to fund research.

“The Invincibles – All United”

As such, with his wife, his sister-in-law and John Scala, another Charcot patient, they created the association, “Les Invincibles – All United”, sponsored by Olivier.

Its aim is to support research on the disease, to help patients to allow better care, to raise awareness among professionals, public authorities and the general public. And they intend to make as much noise as possible! “Oh… not for us, it’s already too late, but for all the patients to come who must keep hope”, he exclaims.

Finally, Ludovic thanks Olivier Goy for his noble obstinacy as well as all the wonderful families, loyal friends, caregivers and carers – “so little considered but yet so dedicated” – and all those who allow all patients with an incapacitating disease like Ludovic and Olivier to continue to smile at life and to dream.

Charcot’s disease in numbers

What is Charcot’s disease or ALS? Amyotrophic Lateral Sclerosis (ALS) or Charcot’s disease is the most common motor neurone disease. Its annual incidence in France is 2.7 new cases per 100,000 inhabitants.
ALS currently affects 5,000 to 7,000 patients in France.
No risk factors were identified in a robust way during the case-control studies. An interaction between genetic susceptibility and environmental factors nevertheless remains plausible.
Clinically, ALS begins on average at the age of 55-60 years with a very low male preponderance since the disease affects 1.5 men for 1 woman.
Scientists consider that 10 to 20% of cases are family forms, therefore genetic and hereditary. There are about three diagnoses a day, making it the rare disease… the least rare. 150,000 people worldwide live with this disease, which causes 1,200 deaths per year in France.

To support the association or for more information, write to the email address: [email protected]

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