By Ugo Maillard
Published on
It is barely 12 noon on this Friday in March 2023 when Laurent Pernet enters the Kai-Iwi cafe in Grenoble.
Affected by amyotrophic lateral sclerosis, better known as Charcot’s disease, the55 year old man fights a daily fight to continue to live.
He tells us about love, his work and his passion for mountaineering. Interview.
“I waited eight months for a wheelchair”
The diagnosis is clear: Laurent is affected by amyotrophic lateral sclerosis. A disease that will slowly paralyze his body. When we meet Laurent Pernet, he is in a wheelchair, has great difficulty speaking and swallowing.
“Today, the disease affects my throat, but my brain is doing very well”, explains the resident of Vizille (Isere) with a big smile.
What is Charcot’s disease
Amyotrophic lateral sclerosis is a rare neurodegenerative disease. Over the months, the patient’s body becomes paralyzed. The brain is the only part of the body that will never be affected.
It is a disease that cannot be cured and the lifespan of affected patients rarely exceeds five years.
Eventually, people with Charcot’s disease die of respiratory failure.
The state of health of the Vizillois will deteriorate over the months. “A physiotherapist, a life assistant and a nurse will take turns daily to provide me with care,” Laurent projects.
He tells us about his impression of being alone with the disease: “I waited eight months to get a wheelchair. It annoys me because there aren’t enough of us so there isn’t a lot of research on the disease. » ALS today affects 5,000 to 7,000 patients in France.
Laurent has decided to fight
When his throat lets go, Laurent does not give up and writes on his phone what he wants to express toGrenoble news : “With the disease, it is the smile or the tears, I chose”.
The smile glued to his face, the 55-year-old man evokes the harsh words spoken by the doctors.
“Four years ago, they told me not to do anything anymore and not to talk anymore to rest. I nodded. But I did just the opposite,” explains the fighter.
I am not at all ashamed of my illness.
Moving with his car, Laurent Pernet explains “moving all the time” and enjoy being “alive”.
A brutal disease
If Laurent does not seem affected by his illness, his eyes become wet when it comes to evoking his two children and his wife.
“My son was with me when the neurologist told me that I had Charcot’s disease. My children and my wife support me relentlessly, but they know that in the end, I could no longer speak, eat, or even move“says Laurent.
A slow descent into hell that doesn’t seem to worry the patient: “It doesn’t scare me”.
A family that carries it
Married and proud father of a 25-year-old son and a 21-year-old daughter, Laurent Pernet has still not retired. At 55 and despite his illness, he continues to manage his distillery located in Vizille.
“With a distiller, we sell eaux-de-vie or liqueurs,” says Vizillois. Supported by his daughter for communication on social networks and by his son in his daily work, Laurent confides to us “moving forward with his family” and not having “what to do with the rest”.
It is with a sparkle in his eyes that the man affected by Charcot’s disease evokes his wife: “The disease makes me fall, my wife helps me get up”.
Head full of dreams
Held back by his illness to tell his story, Laurent never stops imagining his life at 100 an hour.
“Next year I want to go to Mont Blanc; in March, I will descend the Meije and I will also take part in the inauguration of a new zip line in Chamrousse”, lists Laurent Pernet.
Passionate about skiing and rugby, he regularly goes to the stands to see the matches of the FC Grenoble. A taste for life and its little pleasures that Laurent will never give up.
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