Andrew Lydon; My MND Journey

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Andrew Own Words;

My name is Andrew Lydon, I am 46years old and I have Motor Neurone Disease also known as ALS or Lou Gehrig’s disease in America.

For the past few years MND has been slowly crippling me and
eventually it will take my life. The good news is that there is an operation which could extend my life significantly. Maybe even long enough to see my young family grow up. It’s called a tracheotomy. It’s a relatively simple operation. I’ve seen Mc Gyver do it with a pen. The bad news is that the Health Service Executive here in Ireland didnt agree to the operation until very recently. They didn't want to spend money on the care I would need as my condition progresses. I’ve been told that this operation is only available in Ireland to the independently wealthy but this has changed thankfully. So a trust fund has been set up in my name. The goal is to raise enough money so that the HSE will allow the procedure.

I live in Connemara in the wild west of Ireland with my wife Sally and my two children Seosamh, 18, and Molly, 13. One day, in the summer of 2010, while at work I noticed the little finger of my left hand was sticking out from the other fingers. I couldn’t move it back again. Because I spent my days typing I put it down to Repetitive Strain Injury and ignored it. By the following Christmas the muscle between my forefinger and thumb began to weaken and I was losing “pinch power”. In the New Year I finally went to the doctor. What followed was nine months of MRIs, EEGs, blood tests and endless other tests until finally I was sitting in front of a specialist in Dublin being told I had a terminal disease. The news was devastating. How could I be dying? I didn’t even feel sick!

A week after diagnosis I went back to work and tried to carry on as normal. Six months after the diagnosis I started limping on my left leg. Over the next eighteen months I went from ankle supports to a walking stick to a Zimmer frame and finally, in the summer of 2013, I found myself in a wheelchair. Over the same period my left arm got weaker and weaker and soon my right arm followed and I was forced to give up work.