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Living with  Lou Gehrig’s disease

Living with Lou Gehrig’s disease

De DAMIEN PERRIER

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 slight limp 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.

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