best for REAL LIFE
When a devastating diagnosis shook her family to its core, Julie Casson found strength she never dreamed of…
Heading through the luxurious hotel lobby, Nigel’s face lights up. ‘Let’s take a selfie!’
As our daughter Becky grabbed her phone, her siblings Ellie and Craig jumped in. Becky’s picture captured our smiles, none bigger than Nigel’s. We look like a family on holiday. No one would have guessed the truth. That we were about to accompany Nigel, the love of my life, to die…
I’d first met Nigel in 1975. I was 16 and he was 20, the brother of my best friend. Handsome and witty, I fell for him immediately. I knew that he’d faced tragedy. After losing his wife, he was raising his son Craig, who was just five months old.
But I also knew this man was the love of my life. We married in January 1978 and Ellie was born in January 1979 and Becky in May 1983.
As the years passed, my love for Nigel only grew. Ambitious and busy he always had time for his family and whether in the pub or playing golf he was the life and soul of the party.
Life in 2006 was idyllic, full of work – me as a quality manager at a college and Nigel running two construction businesses – friends and pride in our children. We had no idea what lay ahead... It started small. Nigel slurring the old word. He saw the GP, then a speech therapist.
The diagnosis was Dysarthria, speaking as if you have a hot potato in your mouth. Online I read the long and frightening list of possible causes, including a stroke, a brain tumour, Bell’s palsy, Parkinson’s. And topping the list, motor neurone disease.
MND was too horrific to even contemplate. But my mind wouldn’t be controlled. It flew back to the documentary I’d stumbled upon four years earlier. I’d watched a woman doubled over in a chair, drooling and wailing like an animal, unable to speak. This was Diane Pretty, who at 42 had motor neurone disease. I learned that it was a condition that affects the brain and nerves and has no cure.
At the time my heart ached for Dianne and her family. Now, as I remembered her anguish and the inability of her family to stop it, I felt a wave of horror. This could be us.
After three months of tests, in February 2007, a neurologist confirmed what I feared the most. Nigel had motor neurone disease.
The doctor’s words kept ringing in my ears. Life limiting. Three-to-five years to live. It was impossible to comprehend.
That evening, after holding me tight as I sobbed, Nigel sat at the computer. For hours I watched him read about MND. How it affects around 5,000 peop
