Spotlight on MND


Four months

Posted 1/09/2016 09:00AM by Karen Andrews

​We’d known something was wrong with dad for a while.

I live in a different state to my parents, so I didn’t get to witness a lot of the initial stages of decline. My mother said he first noticed something was wrong because he wasn’t hitting a golf ball as far as usual. Participating in sport was one of his greatest pleasures and accomplishments in his life; he still holds a local cricket club bowling record forty years after setting it. So I can appreciate how he would find a change like that frustrating and upsetting.

Scarier changes were to come. Over the phone, I was told about the tests he had undergone; the cautious diagnosis of a slight stroke. Perhaps that was what had caused his speech to slur? They weren’t sure. After a few more months, he couldn’t get through a day without needing to lie down for an afternoon nap. 

My parents came down for the launch of my first book and that was the first time I’d really gotten to see the changes. At family events, he was always the guy with a video camera, documenting events. This latest one was no different, except he needed to support his photographing hand with the other in order to keep it steady; his strength was failing. He’d lost an extraordinary amount of weight. Losing the ability to chew and swallow, his meals were rapidly becoming a procession of nutrition-enhanced Sustagen milkshakes. I remember he tried to eat a corn chip like any person might, by choosing one out of a bowl and putting it into his mouth. But he nearly choked on it, and after he recovered the group gathered around the table went quiet with worry.

Two days later, I got the call he’d been officially diagnosed with Motor Neuron Disease in Sydney, after they’d left Melbourne. I didn’t know anything about the disease before taking the phone call and after running to the computer and doing a few minutes of initial Googling, I knew this was going to be a tough road.

The day of diagnosis was October 20th, 2008. He died February 19th, 2009. Four months. Not even. He was 59 years old. Pneumonia took him in the end, as it does with many others. It happened so fast I didn’t even get to the hospital in time to say goodbye.

I’ve already gone way over my allocated word count for this post, but that’s what talking about this subject does to me. I want to raise awareness; I like to raise money, feel like I’m helping in a tiny way. It helps me grieve. It gets me through the bad days, like when I found one of those tins of Sustagen at the back of the cupboard from his last visit. I cheer at all the Ice Bucket Challenges.

I share my story and I listen to others. I learn. Only by learning can we hope to find a cure.


My Mum was 5 weeks from Diagnosis.. And 53, Not sure if it makes it harder or easier knowing they suffered for less time..
4/09/2016 11:26:11 AM


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