A book about ALS written batting eyelids 150,000 timesby Beatrice Credi - 2017.02.20
'Abécédaire d’un Charcot' (alphabet of a Charcot) is the extraordinary book written by Damien Perrier. French physicist, 42 years old, and since 2009, bed-ridden with ALS, also known as illness of Charcot. "Everyday, I receive mesages from others with my situation. They ask me everything, from information about my medical treatment to the most personal things. So, that’s why I decided to write a book with the answers. With a good dose of humor as well", he explains. The book is light but also profound, and it tells about the many aspects that people with this illness have to face. For every letter, a word. For every word, a definition, or anecdote, or story. To create this book, Damien batted his eyes 150,000 times, using a system called “eye-tracking” that is connected to a computer, because he is quadriplegic and has no voice.
My Voice gives individuals with ALS their voice back
“Losing one’s voice forever is traumatic. The other day, my 11-year-old daughter asked me if the metallic voice of the PC was my real voice. After which, I was overcome with sadness”. This is how Julius, with ALS since 2007, described the scene. He is no longer able to speak Read More.
Music festival with singers who have ALS competes with Sanremo
San Foca, Melendugno (LE), is a sea town in Italy where a song festival was launched as an amusing parody of Festival of Sanremo, called Festival of San Foca. Protagonists with ALS and other pathologies are included in the program Everyone at the Sea! This is the pilot project called Read More.
Italian judges can decide end of life care for those with amyotrophic lateral sclerosis
Upon patient request, in Italy, a judge can force healthcare professionals to interrupt life-sustaining therapy to individuals with ALS (amyotrophic lateral sclerosis). Should the patient be unable to communicate his/her wishes, the patient’s caretaker (with power of attorney) will be able to make the decision in his/her place. This is Read More.
A special sunday dedicated to people with ALS
It is estimated that in Italy, people with ALS (Amyotrophic Lateral Sclerosis) are around 5/6 thousand. A figure which at global level reaches 420 thousand and is expected to grow by around 32% by 2040, especially among women. To this neurodegenerative disease associated with progressive impairment of voluntary muscles, it Read More.
How many people live with ALS worldwide
It is estimated that over 420,000 of the world’s population are living with ALS/MND. And about 6,000 of them are from Italy. Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country Read More.
Two paralyzed control a computer with thought
Two paralyzed people with amyotrophic lateral sclerosis (ALS), were able to move a cursor on a computer screen with the power of thought. The extraordinary result was possible thanks to electrodes implanted in their motor cortex, the part of the brain that controls movement and that are able to decode Read More.