Charcot disease: “I learned that my life expectancy would go from 40 years to 3 or 4 years”

“The first symptoms date back to the end of 2019, but I did not receive the diagnosis of Charcot disease until September 2022. That day, with the neurologist, I learned that my life expectancy would increase from 40 years to 3 or 4 years,” Loïc tells me with a certain lightness. This man in his forties, married, father of two children, showed great strength during our interview. “You know, sick people put things into perspective a lot,” he told me. I had a rather easy life, I was born in France, into a relatively well-off family… so of course, my life will be shorter than many people, but I had the impression of enjoying and having had a lot luck.”

Spinal ALS that started with tremors in the hand

The first sign of his amyotrophic lateral sclerosis (ALS) was a shaking hand after a tennis match. “I was drinking a soda with my teammates, but my left hand was shaking, as if I was lacking even though I didn’t drink a drop of alcohol,” recalls the tennis enthusiast, who did not immediately worry. It was his wife who pushed him to see a specialist. “After various and varied explorations, the neurologist first discovered that I had neurosarcoidosis. It’s a disease that causes the same symptoms as ALS, except that it is treatable.” Several months of treatment follow, but Loïc’s state of health does not improve, on the contrary. “So when Charcot’s disease was announced, I wasn’t stunned, I was a little prepared for it.” Amyotrophic lateral sclerosis is a degenerative pathology whose origin is complex for doctors to determine, with a multifactorial component, subject to the influence of genetics and the environment. “All we know is that my illness is spinal and that it is not familial.”

“Today, I am unable to take more than three steps without being supported by someone”

Two months after this announcement, Loïc ceased his professional activity. “I had no time to waste. Then, I went to the Île de Ré for a week every month, to my parents’ house. I bathed, I rode an electric bike… Until it was no longer physically possible. And a year ago, I took a great trip with friends to enjoy Guadeloupe. At that time, I was walking almost normally, whereas today, I am unable to take more than three steps without being supported by someone.” This is one of the terrible specificities of this disease: it progresses very quickly. The motor neurons die one after the other, gradually leading to the general paralysis of the patient who, on the other hand, retains all his intellectual abilities. “In a few months the disease puts you from a standing position to a sitting position, you fight against gravity, it goes very quickly.”

But far from giving up, this father decided to fight against the injustices surrounding his situation. “For example, as I was not diagnosed quickly enough, I am not eligible for experimental treatments in France…”, and the only treatment available in France, riluzole, is not tolerated by the liver of the sick. “I had the chance to test another medication through a Swiss doctor, but it’s the same story, my liver doesn’t tolerate it. So today, I have no treatment.”

A fight for active assistance in dying

His other hobby horse, and not the least: campaigning for active assistance in dying. “This does not mean that I want to die or that I am against palliative care, because for me it is extremely important to treat pain at the end of life… But on the other hand, I am fiercely opposed to deep and continuous sedation ! I think it is made for the comfort of caregivers who do not have the impression of causing death, but not for the patients who will take up to two weeks to die, nor for those close to them who witness the death. slowly from the person. This assistance in dying must be an act of care. Today, our pets die in better conditions than us!” A fight that he does not fail to take to social networks, notably via his Instagram page, @resiboisloic, on which he also shares moments of life, such as this race for the benefit of ARSLA, an association which works for the research against Charcot disease.

“Fortunately the associations are there to help the sick”

ARSLA has been of great help to Loïc, since thanks to it, he has a wheelchair. “I want to thank them because today, if it weren’t for this association, I would have been in my bed 24/7 since October, because I only just had an appointment with a rehabilitation doctor to obtain one…” The patient deplores their lack of responsiveness from the administrations, but also from hospitals. “Nothing is adapted to the speed of progression of this disease. I have also had great difficulty getting an appointment with a pulmonologist for almost a year… And besides that, SLA Mobility 80 allowed me to rent a vehicle adapted to my wheelchair for a modest fee . So I insist, fortunately the associations are there to help the sick! Thanks to this vehicle, I can still go for walks with my wife and my dog ​​along the Somme.”

“I would also like to pay tribute to the caregivers”

“Every morning, it’s my wife who helps me get up and every evening, it’s her who puts me to bed. It’s my wife who dresses me, it’s my wife who helps me go to the toilet, it’s my wife who gives me food… I would therefore also like to pay tribute to the caregivers who we too often forget. And the more the disease progresses, the more difficult life will be.”

Currently, Loïc’s state of health no longer allows him to raise his arm to scratch his head when he is lying down. He is also no longer able to turn over in bed. “For the moment, I am still very happy, but I would like to have the guarantee of a painless death at the right time, in order to have a peaceful end of life, without being afraid of being in this kind of environment. two, where I would not yet be dead but no longer truly alive.”