Living with Lou Gehrig's disease : amyotrophic lateral sclerosis ALS
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Fiche technique

Format : Broché
Nb de pages : 112 pages
Poids : 165 g
Dimensions : 15cm X 21cm
Date de parution :
ISBN : 978-2-35208-393-1
EAN : 9782352083931

Living with Lou Gehrig's disease

amyotrophic lateral sclerosis ALS

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English translation by Louise Serratrice


Quatrième de couverture

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.