A computer with a virtual keyboard allows him to create songs. The 46-year-old also launched a site to give a message of hope to the sick and their loved ones.
Pone was part of a famous rap group in the 1990s: Fonky Family. The rapper, whose real name is Guilhem Gallart, continues today to make music, but with his eyes. In 2015, he discovered he had Charcot’s disease, also called amyotrophic lateral sclerosis (ALS). Since then, his body has been almost completely paralyzed. A computer and a virtual keyboard allow him to compose with his eyes and pursue his passion, as told France 3 Tarn.
The passion for music
Rapper Pone can no longer speak or use his hands. However, letting go of his passion was not an option. “Music has always been part of his life,” says his wife Wahiba Gallart. Thanks to eye navigation software, he can now compose pieces with his eyes on a computer. We had to adapt to this tool and learn to master it, but since then, Guilhem has been able to let his creativity express itself again. In the last three months, he has composed 70 songs. The software also allows him to communicate with others.
A committed man
“This disease is so difficult for people and they are so helpless, he explains. I want to help (…) by saying that a life is possible”. In 2018, the rapper launched a site “ALS for Dummies“. He recounts his daily life, his treatments, his doubts and his anxieties to share them with other patients and their families.
An unknown disease
Charcot’s disease is little known to the general public. Anyone can be affected and at almost any age, although the first symptoms usually appear between the ages of 40 and 60. In 90% of cases, no risk factor accompanies the onset of the disease. Today, no treatment can cure it. Over time, the patients’ paralysis worsens, first affecting the limbs, the respiratory functions and then the whole body. Only 10% of patients live more than ten years after diagnosis.
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