TESTIMONIAL EUROPE 1
Wahiba is the wife of Guilhem Gallart, aka Pone. In 2014, the rapper, former member of the Fonky family is affected by the first symptoms of Charcot's disease. For the last five years, she has been taking care of him while gradually losing the use of his muscles. A particularly difficult event, especially in the early years, but thanks to the support of their loved ones and the motivation of her husband, the family is happy. In the Free Antenna, Olivier Delacroix's microphone on Europe 1, Wahiba tells how she is carried by the strength of her husband.
"The first symptoms started in December 2014 and we had the diagnosis in April 2015. It is a tsunami that is taken, it has called into question Charcot's disease is a neurodegenerative disease. at the simplest, motor control, from the brain to the muscle, no longer works, and since the muscle no longer receives control, there is atrophy and paralysis of all the muscles.
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Today there is a treatment to slow down the disease for a few months, especially on the respiratory tract. But according to the patients it is very random. The Telethon represents for us the hope that research advances, that it finds a cure. We know that today is a disease that does not have one, but we all hope. All patients, because the evolution of the disease is so fast that every year counts. Without funds, there is nothing that can move.
Heard on europe1:
He is bedridden 24 hours a day, he is fed by gastrostomy and he breathes thanks to a tracheostomy
When doctors tell you that the average life span, once the diagnosis is made, is two to five years, it's hard to say 'we're going to die soon'. He was standing up, it took a long time to assimilate everything that happened to him. It was very complicated for him. All the feelings are jostling because he had no choice but to accept the diagnosis, but at the same time one must also know how to project oneself with it.
At first he was in a kind of fight, because he must mourn his body as it paralyzes. And we can not anticipate because we do not know which part will be paralyzed. Today, he is bedridden 24 hours a day, he is fed by gastrostomy, by probe, and he breathes thanks to a tracheotomy, with an artificial respirator.
Heard on europe1:
The disease is sorting among friends
The family environment, friends, it plays a lot. He is also a believer, so his faith helped him a lot. The accumulation of all these things, it gives strength to be able to face the disease and it succeeds. At the beginning, we find ourselves in a position where we have to manage everything, the children, the house, to manage him. And at the same time we do not have time to think. I did not think, I acted.
Fortunately, I had the support of the family to help me. I felt immediately supported. It was not long since we settled in the Toulouse area, my family was going back and forth, I have one of my sisters who gave up everything and who stayed two years to help me. In the city where we live, there were also Pone's parents who helped us a lot, especially his dad. The disease is sorting among friends, there are some who have remained just as present before and during the illness, others with whom the links have been strengthened.
Heard on europe1:
The auxiliaries of life is a second wind, they are part of the family
At the beginning of the illness, we did not want outside help because it's still difficult to bring in people we do not know in our deep intimacy. But the auxiliaries of life is a second wind, in addition we had the chance to fall on the auxiliaries of life with whom we get along very well. They are part of the family, they are auxiliaries of life but they are also friends.
It's every day, all day, they are very important to give me free time to breathe, take care of my daughters. These are people who are really invested and it is important to put them forward because they are not always well considered whereas today if one is also serene and happy despite the disease, it is thanks to them. When I say that, I am sometimes taken for a crazy one, but despite the illness we are very happy.
Heard on europe1:
He just released an album that was composed, mixed and made only with his eyes
Pone has a computer with eye navigation and through his eyes he can compose music. This is not a suitable software, he just took the one he used. Fix (eyes, editorial) part of the software validates the command. What you can do with a mouse, does it with your eyes. He did it mainly to give hope to patients suffering from other serious pathologies. Life does not stop with illness. He just released an album that was composed, mixed and made only with his eyes. This is a first in the history of music. It is free and available for free download on the internet. His name is Kate and Me . There he writes an autobiographical book and there are many other projects. He does not stop.
We have two little girls. At the time, they were 6 years old and 3 years old. Today it is a situation they have accepted, they even laugh. If they want to play, the girl brings her doll and they both play. The larger one enters the preteen, so they talk about music. He is a daddy in his own right, when he must punish he punishes, he even has more authority over them than me.
Heard on europe1:
His strength carries everyone
By the time he was released from resuscitation after two months, he wanted to regain his place as daddy and he thought one of the best ways was to tell them the evening story as he was used to before . He invented a tale for them, we all got hooked because it was great. In the beginning we decided to illustrate it for girls and finally we thought why not only confined to them if it can please other children.
He has a lot of projects and he likes to go after what he does and we are carried by all that. The fact that he lies in a bed, that he breathes with a machine and that he undertakes everything he does today, it puts us in a position where we have no right to complain . His strength carries everyone. With the life we lead today, we get rid of many things that took our heads before. We focus on the essentials and the present moment and we are light enough to move forward. "