What is MND/ALS?

What is MND/ALS?
MND/ALS is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe, and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. In most cases, it does not affect intellect, memory or the senses. Progress is relentless and generally rapid, with a life expectancy of between 2 and 5 years from the onset of symptoms. There is no known cause and there is no known cure. See links on the right for further information.

Saturday, 13 June 2015

Still Alice & Back to the UK

I watched the movie 'Still Alice' last night on a flight from Sydney to Singapore. Yes, I'm travelling again and have been ticking off lots of places in Australia from my bucket list over the past two months hence the lack of blog updates! Tomorrow I leave Singapore for London to permanently remain in the UK and commence my battle against Motor Neurone Disease, which is slowly tightening its grip on me.

Anyway, back to the movie, the story is about a linguistics professor in her 40's, Alice, played by the fantastic Julianne Moore (she won best actress Oscar for this movie in 2015), who is diagnosed with early onset dementia. The movie follows her struggles to adapt as the disease takes hold of her.

There is one scene about 2/3 of the way through where she does a speech at an Alzheimer's conference and I was able to relate so much to some of the words spoken in the speech. I just Googled it and this is from the script ...

"All my life I’ve accumulated memories - they’ve become, in a way, my most precious possessions. The night I first met my husband, the first time I held my textbook in my hands. Having children, making friends, traveling the world. Everything I accumulated in life, everything I’ve worked so hard for - now all that is being ripped away. As you can imagine, or as you know, this is hell. But it gets worse.

For who can take us seriously when we are so far from who we once were? Our strange behavior and fumbled sentences change other’s perception of us and our perception of ourselves. We become ridiculous, incapable, comic. But this is not us, this is our disease. And like any disease it has a cause, it has a progression, and it could have a cure. My greatest wish is that my children, our children - the next generation - do not have to face what I am facing. 

But for the time being, I’m still alive. I know I’m alive. I still have people I love dearly. I still have things I want to do with my life. I rail against myself for not being able to remember things - but I still have small moments in the day of pure happiness and joy.

So, 'live in the moment' I tell myself. It's really all I can do, live in the moment. And not beat myself up too much for mastering the art of losing."

I definitely recommend checking out the movie. Here's the YouTube trailer :