What do Jean-Pierre, sixty years old in a Hawaiian shirt, and astronaut Thomas Pesquet have in common? Both have trouble keeping their balance. In a gray room at the University of Caen, Jean-Pierre rushes as best he can to walk along a wire, putting one foot exactly in front of the other, toes against heels. Around it, the various obstacle courses are a carbon copy of those developed by NASA from the time of the Skylab space station in the 1970s.
Jean-Pierre pitches a little, and three steps are enough to put him in a sweat. But for him, it’s a real victory. He suffers from idiopathic bilateral vestibulopathy (VBI). A complicated name for a rare disease that destroyed both of his inner ears. Affected individuals stagger, wobble, and often fall.
“To stand up, we use three elements: our vision; our vestibular system, in the inner ear; and the sensors of the muscles and ligaments of the legs, through proprioception (1)sums up Christian Van Nechel, from the Vertigo Clinic in Brussels. In these patients, the vestibular system no longer exists. They can therefore only rely on their vision and their muscles.. » Walking on pebbles at night becomes mission impossible.
A lack of gravity that permanently unbalances
Like Jean-Pierre, around forty patients met in early October at the initiative of the University of Caen and NASA, for four days of tests. “This is the largest and only study of its kind worldwide.indicates Gilles Clément, specialist in space medicine who is shared between Houston, for the American Space Agency, and the Normandy University. Most of the work focuses on two or three cases maximum. Here we benefit from the support of the patient association, the AFVBI (French association of idiopathic bilateral vestibulopathy). »
Objectives: better understand the pathology and develop a protocol for patients and… astronauts. Because Thomas Pesquet and his colleagues also had trouble finding their balance when they returned to Earth. Blame microgravity on the International Space Station. “On Earth, we are constantly stimulated by gravity”begins Professor Pierre Denise, doctor at the Caen University Hospital and head of the Comete laboratory where the tests are carried out.
In space, everything floats, up and down, right and left no longer exist. Sport, for at least two hours a day, limits muscle wasting. “But we realized that this is not enoughemphasizes Pierre Denise. The vestibular system of astronauts is not used, and this has temporary but annoying consequences when they return. »
Do better than an astronaut
For the American Space Agency, which intends to land men on the Moon and later on Mars, the crew must be immediately able to organize themselves, without having to suffer a backlash, even for a few days. In the shorter term, the problem will also arise for “new” astronauts. Because if space opens up to tourism, it will open up to people in less good health who could adapt less well.
For the moment, “Astronauts need a good week of recovery to succeed in the exercises we do here», reports the American researcher Angie Bukley. Behind her, the participant of the morning does not hide his pride in having succeeded in stepping over an obstacle, hands on shoulders, arms outstretched. Telling yourself that you can do better than an astronaut boosts morale in a daily life limited by disability.
Thanks to the experiences of the patients and the results of the tests, the specialists hope to establish a protocol to limit the effects of this loss of inner ear. ” What we learn in a few days will allow us to make great strideswelcomes Angie Bukley. For example, we can see the importance of touch and proprioception, so we can imagine exercises by pushing on surfaces. To Jean-Pierre, who overestimates the angles when he travels, Gilles Clément advises to train in front of a mirror: “You close your eyes, you try to turn around and see if you come face to face with the mirror again. »
VBI, a very poorly understood disease
With twenty years of VBI behind him, Jean-Pierre welcomes practical advice. “It’s a very poorly understood disease, so to see all these researchers looking into our disorders is an incredible opportunity and it’s very encouraging. » He himself was tossed from Rennes to Béziers, before finally understanding his situation. A relief for his wife too, who had to face a plethora of diagnoses by his side “one more fatal than the other”. Here, all describe a pathology that is difficult to understand, which must be tamed after a long medical wandering.
“I was in the car with my son, when suddenly everything started to turnrecalls Nouara. Luckily I was able to stop. In 2012, the former nurse’s aide had her first rotary vertigo, “the feeling of being in a wringer”. His general practitioner talks about the stress of work. The situation worsens, the young woman consults psychiatrists, takes medication. “I am physically unbalanced, but not in my head! », she defends herself. Nothing works. He was then referred to neurology, again without an answer. Finally, in 2017, she arrived in the office of Michel Toupet, an ENT specialist in the problem. Five years after her first symptom, Nouara finally has a name for her new reality.
Since then, she has learned to live again and has found a tight-knit community with the association’s patients. Here everyone can describe their problems, “without being told that we must stop the glass of white wine!” », laughs a patient, before telling how he carries empty boxes in balance to train. Next to him, another has taken up yoga. Jean-Pierre continues the dance. “You have to constantly challenge yourself! », he said. A philosophy worthy of an astronaut.