Written by Gail in 2016

Reproduced from "Non-Invasive Ventilation and Weaning: Principles and Practice, Second Edition"
(by Mark Elliott, Stefano Nava, Bernd Schönhofer)

"I was an extrovert who had a lot to say and did everything at 100 miles per hour. The symptoms of motor neurone disease (MND) came on rapidly, and soon, I was like a prisoner trapped in a prison, the prison being my own body.

Many men would have left, but not my Patrick. He stuck to our marriage vows, but he has only had the ‘in sickness’ part and is still waiting for the ‘in health’ part.

Six months after our wedding in 1995, I had a back operation to remove a slipped disc. After recovering, I was desperate to start a family, but MND put a stop to my dreams. I had heard that there was a 2–3-year life expectancy after MND diagnosis, and I feared I would only have 2 years to live. I was 35 years old.

In 2008, after my tracheotomy, a nurse said I would be lucky if I got to go into our back garden. I saw this as a gauntlet she had thrown down. My stubborn side saw this as a challenge. I was determined to prove that nurse wrong. I decided I would not be like most people and lay in bed and wait to die.

I would like to stress the following:
● Having the ventilator opened up my life. It enabled me to go anywhere.
● Many years ago, our flight was diverted, making an emergency landing, as I encountered respiratory problems with no access to a ventilator.
● My respiratory consultant Dr Mark Elliott gave me a new lease of life, and without Patrick, I would have no quality of life."