On the 23rd August 2012 my life changed forever: I was diagnosed with Motor Neurone Disease [MND/ALS]. There it was, a death sentence; my death sentence. MND took ownership of me that day. It wasn’t only me that was dealt a blow that fateful day. My husband and son lost the promise of a happy future, my parents and sisters lost a cornerstone of the past. I will never forget that drive home from the hospital, the eerie presence of bad news hung over us. My husband turned to me and asked, “do you want to be with your family?”. I nodded yes. We drove up to my parents’ house. My mother was carrying clothes out to the line. She didn’t look over to smile and wave like she usually would. If we had beeped and waved over, that was a signal that everything was ok, but we didn’t. She kept her head down, avoiding the inevitable bad news, clinging on to normality for just a moment more. We met my dad in the kitchen, he had a look on his face that I didn’t recognize, he was studying my demeanour for an indication of the verdict. I remember sobbing in his arms – my dad could fix anything but we all knew I was diagnosed beyond repair.
To understand the medical effects of MND on the body, that’s easily found online. But I want you to understand more than that, I want to tell you how it affects me, without the medical jargon. MND is relentless – once it arrives it is with you forever and no matter how good a fight you put up MND always wins. For me, its arrival was subtle but within months it was in plain sight. Chipping away, slow and steady, the MND monster unleashed inside me, free to destroy everything.
It started its initial destruction in my legs and when they could no longer hold me up it moved onto my hands and arms. I was able to study the muscle wasting closer this round, watching my hands slowly lose shape. Not satisfied with destroying my limbs, the monster, as subtle and sneaky as ever, went for the big one, my speech, my voice; the essence of me.
Motor Neurone Disease is known as the 1,000 day disease because most patients die within this timeframe. I’m approximately 1,300 days living with it and although I am effectively paralysed from the shoulders down, I still feel I’ve got some fight left in me yet!