Awareness weeks come and go. These days there seems to be a week or day for absolutely everything, most very worthy causes supported by dedicated people.
In seeking publicity for their particular topic, supporters generally offer a person with lived experience of the condition, cause, whatever. It's a good way to spread their message. And so it was when I was alerted to the fact that June 21 marked Global MND Awareness Day. But I didn't need a subject to interview: unfortunately I have personal experience.
MND - motor neurone disease - it's something you never want to hear when you're sitting in a doctor's office. Those three letters, three words, are a death sentence. And so it was that my older brother Ian received the news. It was devastating.
Courtesy of the MND Victoria website, here's a description: MND is the name given to a group of diseases in which the nerve cells - neurones - controlling the muscles that enable us to move around, speak, breathe and swallow, fail to work normally. Motor function is controlled by upper motor neurones in the brain that descend to the spinal cord. These neurones activate anterior horn cells - lower motor neurones - which exit the spinal cord and directly activate muscles. With no nerves to activate them, muscles gradually weaken and waste.
So there you have it. There is no cure and once diagnosed, patients have an average life expectancy of two to three years. MND isn't easily diagnosed, so my brother spent a lot of time to-ing and fro-ing with various doctors until he was confirmed to have MND. It was a frustrating time - we'd Googled and read and thought it might be, but getting a doctor to actually say those three words was hard.
Early symptoms are mild and can include stumbling due to weakness of the leg muscles, difficulty holding objects due to weakness of the hand muscles, slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles. Ian had all these.
Ian did his best to look on the bright side - "There's research going on all the time; they just need a breakthrough," he'd say.
All the while he was deteriorating until he decided to move into care. He wasn't there that long; the decline was rapid.
The one thing he lamented was that while his body had become almost useless, his mind was not. "It's cruel," he told me. He understood exactly what was happening to him. You could see the frustration in his eyes... the feeling of hopelessness... of wanting to be able to move, to speak.
Most people with MND retain the use of their bowel and bladder, as well as their hearing, sight, taste and smell. And so it was for big brother: but, he told us, being able to smell food he could hardly swallow didn't make for happy mealtimes.
A once strong, active and independent man now became bed-bound - totally dependent on others... even to scratch his nose. It was hard enough to watch. I didn't even want to imagine how it felt.
Every day in Australia, two people are diagnosed with MND and two people die from it.
Ian's time came in October 2015, a month after his 68th birthday. We were due to see him that afternoon to talk about what came next. Think he'd already decided.
While there's no cure, you can make yourself aware. MND Australia has a wealth of information for people just diagnosed as well as for family and friends. There is also news about research and brochures that can be downloaded. No computer access? Freecall 1800-777-175 to have information sheets posted to you.
Of course, your donations to help fund research into this insidious life-taker are always welcome.
One day, MND, your time will be up.
