Marc Gauthier is an elected official. He is fully aware of this, knowing that he has given a lot of himself to make the promise come true. Sitting on his couch in Bordeaux, surrounded by his two big cats, his eyes twitch. Ready to let loose at the slightest opportunity. And even though his speech is a bit jarring: “thank you Mrs. Parkinson,” his spirit has lost none of its vibrancy. After all, he is only 63 years old. He begins his retirement as an architect with regret.
He suffers from Parkinson’s disease, diagnosed in 1996. After two years of “honeymoon”, without too many symptoms, came the time of “the debacle”, with severe dyskinesias, these involuntary movements of the legs and arms that really hinder him . He had barely walked for years when…
Marc Gauthier is an elected official. He is fully aware of this, knowing that he has given a lot of himself to make the promise come true. Sitting on his couch in Bordeaux, surrounded by his two big cats, his eyes twitch. Ready to let loose at the slightest opportunity. And even though his speech is a bit jarring: “thank you Mrs. Parkinson,” his spirit has lost none of its vibrancy. After all, he is only 63 years old. He begins his retirement as an architect with regret.
He suffers from Parkinson’s disease, diagnosed in 1996. After two years of “honeymoon”, without too many symptoms, came the time of “the debacle”, with severe dyskinesias, these involuntary movements of the legs and arms that really hinder him . He had barely walked for several years when his neurologist, Professor Dominique Guehl of the University Hospital of Bordeaux, suggested he take part in a scientific experiment.
“I am naturally curious and a go-getter. As proof, I was mayor of the city of Saint-Michel-de-Rieufret, in the Gironde, for twelve years. Parkinsonian, architect and mayor! » What could be more natural for him than to participate body and soul in the work of public health. “I was chosen because I met the criteria that scientists and surgeons expected. I was both severely affected cognitively by the disease – I could no longer walk, I broke my face several times a day – but I was intellectually active and very demanding. Because to get back on track, I had to accept the various operations, the tests, the adjustments, the months of mobilization in Switzerland. Being an actor within this great team was an adventure, we all became friends, a family with chefs and sous chefs. Actually we all had a nice time together. »
Marc Gauthier moves thanks to a neurotransmitter implanted in the spinal cord, connected to an “on”/“off” remote control, he can walk and even run again
Claude Petit/ “South-West”.
“We had to work on the settings. Six months of exercises, analyses, observations, jokes, rehabilitation. This work has created bonds between us”
A “nice guinea pig”
If doctors and researchers refuse to qualify Marc Gauthier as a ‘guinea pig’, he is not ashamed. “But yes, but yes, I am a guinea pig, a nice guinea pig actually, because I was always ready for all experiments. I had already undergone surgery in 2004: deep brain stimulation. My wife Nathalie was even more scared than me: two drill holes in the skull, into which a wire was inserted that connects a box – a kind of pacemaker – that was implanted subcutaneously at the chest level. Hours on the operating table, awake so I could answer all the questions. Not even afraid. Well, after that it improved my arm dyskinesia a little, but not the rest. »
“It didn’t function well at first, there were a lot of falls. It was better to pretend than to be discouraged”
You will return to the block in November 2021. Marc Gauthier is operated on by the team from the NeuroRestore center of the University Hospital of Lausanne in Switzerland: Jocelyne Bloch, Grégoire Courtine and Eduardo Martin-Moraud. Still not afraid. “We just placed a neuroprosthesis in the spinal cord at the bottom of the back. Fast, efficient. Much less traumatic. A few days later we had to work on the settings, Marc remembers. Six months of exercises, analyses, observations, gadins, rehabilitation with a physiotherapist. All these challenges together have created bonds between us through this work. »
Nathalie, his wife, was traveling. Six months in a hotel open to patients of the University Hospital of Lausanne “a 3 star, impeccable! » Walk, fall, get up, sit down and “break your face”. With the neurotransmitter, without the neurotransmitter. “We still had a lot of fun, at the beginning things weren’t good, there were a lot of crashes. It was better to mess around and joke around than to get discouraged. And then we finally found the right setting: bingo. I held up well, because breaking my face had been my daily life for a long time. It was Nathalie who picked me up. I broke my eyebrow several times on one side, on the other side, even my nose. It was different there, every fall taught us something. It wasn’t a failure. »
Marc Gauthier also speaks fondly of his two older sons, with whom he “never played football”. Two sons who stood in his way protected him all his life: “No one had any interest in joking, otherwise… It’s strange, I was a funny father,” he notes, “doesn’t quite make a father. »
“In the University Hospital of Lausanne I saw a paralyzed person walking. What they are doing there is revolutionary”
Crazy hope for Parkinson’s patients
Earlier, he returned home after an errand. A bit of happiness rediscovered: “I ran to catch the bus! A 100 meters. Running to avoid missing the bus was almost automatic. And when I emerged disheveled and out of breath, I was moved. I called Nathalie, she didn’t believe me, but it’s true. I hadn’t run in thirty years. I immediately called the Lausanne team, they couldn’t believe it! »
He tells everything, in bulk, before and after. His life taking a new turn, his friendship with scientists, recognition. Due to the discreet feeling of being the basis of crazy hope for Parkinson’s patients and even for paraplegic patients, he has even reduced his doses of L.Dopa (dopamine) since the operation.
Marc Gauthier spent six months in Switzerland, time to find the right “adaptations”. On the programme: rehabilitation, observation and lots of fun… “Every autumn has taught us something. It wasn’t a failure. »
Claude Petit/ “South-West”
He thinks of his sons when they see him standing there, kicking a football and maybe more. “During my stay at the Lausanne University Hospital, I was not alone: I saw a paralyzed person walking,” he adds. What they are doing there is revolutionary. My neurotransmitter is so simple, it just requires a little remote control, I turn it “on” in the morning. Here we go. Since I got back, I went to Ikea with Nathalie. Normal for you, unbelievable for me, I haven’t gone anywhere for fifteen years and certainly not in public places. I stopped taking the elevator because otherwise I would break my face due to “freezing”, the blocking of the feet that is specific to Parkinson’s patients. I took the plane, the airport with my fingers up my nose, the train. My ultimate wish today: go water skiing. I practiced when I was young and I dream of finding this feeling again. »