Julie and Nigel in their early years together (Picture: Julie Casson)
‘Life-limiting’. ‘No cure’.
These were the words the doctor used to explain that my husband, Nigel, had three to five years to live, and I felt numb.
Moments like this are not at all what you imagine.
There’s no darkening sky, no rumble of thunder. Your heart doesn’t miss a beat and the world doesn’t hold its breath. Everything remains the same.
And yet, for us, nothing would ever be the same again.
The first sign that something was wrong with Nigel came in the summer of 2006 when I noticed the gradual deterioration and slurring of his speech.
‘My tongue feels like it doesn’t belong to me,’ he said, nonchalantly, to me one morning. ‘One minute it’s twisting all over the place, the next it’s as heavy as a brick.’
He carried on about his business – washing his clubs before heading out to play a round of golf with his brother – as if this admission was the most normal thing in the world. But the words stuck with me. I was concerned.
To put my mind at ease, we spoke to our GP who, at our request, then referred us to a speech therapist.
She immediately recognised Nigel’s speech problems as dysarthria, a condition where you have difficulty speaking because the muscles you use for speech are weak – but she didn’t know the cause.
A quick Google search will tell you that dysarthria can be caused by conditions that damage your brain or nerves and, to be safe, she advised us to see a neurologist to find out. We did and were told to prepare for a barrage of tests.
Nigel endured blood tests, MRI scans and an electromyography (EMG) test that detects neuromuscular abnormalities, all so that we could eliminate other diseases and find out exactly what was going on.
‘It’s like a liner on the horizon,’ advised the doctor. ‘Not until it gets closer can we be sure what it is.’
Nigel worked for years as a scaffolder (Picture: Julie Casson)
Eventually, diseases such as multiple sclerosis, Parkinson’s, Huntington’s and more were eliminated, leaving us with just one: Motor Neurone Disease (MND).
MND is a distressing, debilitating disease that ultimately robs its victims of the ability to move, speak, eat and breathe.
The night he was diagnosed, as we researched MND on the internet, Nigel found a documentary about a man with MND who had gone to Dignitas – a Zurich-based nonprofit that provides physician-assisted suicide to members with terminal, severe physical or mental illnesses.
‘Poor man,’ I said, but Nigel thought differently. ‘Not a bad way to go,’ he said.
At the time, I thought it was a throwaway comment. Besides, we had treatment and life to get on with, so we never mentioned Dignitas again.
In the years that followed, this degenerative disease slowly and savagely destroyed Nigel’s body.
First his speech was affected, then slowly his legs followed. He went from using a cane to a walker, then eventually a wheelchair. The strength in his …read more
Source:: Metro
