En 2008, D. Perrier se découvre une légère boiterie. S'ensuivent neuf mois d'incertitudes jusqu'au diagnostic final : il est atteint de la maladie de Charcot, un mal incurable avec une espérance de vie allant jusqu'à cinq ans. Il se bat pour vivre et raconte ici son quotidien, avec des données personnelles ou médicales organisées thématiquement : chutes, douleurs, gastrostomie, entre autres. ©Electre 2024

I can see pictures of my entire existence file by on the ceiling of my hospital room. I'm a spectator watching a film of my life, so to speak. My muscles no longer work, I've lost my ability to speak, but my brain is still functioning at full capacity. I use it constantly to perform ordinary actions that have become impossible for me.

The slightlimp I first experienced on September 29, 2008 as I was walking my daughter to school, turned out to be the beginning of my nightmare. After that came 9 months of therapeutic meandering until the diagnosis hit. I had amyotrophic lateral sclerosis (als) otherwise known as Charcot's disease. The illness was incurable and came with a life expectancy of 3 to 5 years after diagnosis. In a case like this, you either give up or fight for dear life. I chose the second option. After a number of ups and downs and several brushes with death, I'm still here to write this book.

Every week I get messages from people who feel helpless in the face of als. They want to know what a gastrostomy is, how a respirator works, what a tracheotomy is like. I've even been asked why I want to live hooked up to a machine for the rest of my days.

To answer those questions, I decided to write a book, or rather a handbook of basic facts where I offer a mixed bag of personal experience and technical facts, along with a small dose of humor. All the important elements of my life as a Charcot patient have a chapter devoted to them. Here are some examples, in order of appearance : Bedridden, Blues, Falling, Pain, Therapeutic Trials, Wheelchair, Gastrostomy...

I might add that it took me approximately 150 000 blinks of the eyes to write this book. I have never used capital letters for the acronym als in this work ; it is simply not worthy of it.