Friday, 21 June 2013

Global MND/ALS Awareness Day

So, it's Global MND/ALS Awareness Day today. For those of you who don't know (look at me, raising awareness!), MND is Motor Neurone Disease. It's a progressive disease that attacks the motor neurones in the brain and spinal cord, affecting the brain's ability to initiate and control muscle movement. There are different forms of the disease, but ALS (Amyotrophic Lateral Sclerosis) is the most common. With ALS, both upper and lower motor neurones are affected, meaning the sufferer gradually loses the use of both upper and lower limbs, followed by slurred speech, difficulty swallowing and ultimately difficulty breathing.

Diagnosis can take a long time as there is no test for MND. You have to diagnose by excluding other possibilities. And there's no cure. Once you know you have MND, it's not if, but when. The person most people think about if they're aware of MND at all is Stephen Hawking, but he is actually an unusual case - he has lived with the disease for fifty years. Most people with the ALS form of the disease die between two to five years after their symptoms first present. That's what happened to my father - he died less than two and a half years after his first symptom, a fairly inocuous-seeming loss of strength in his leg.

My father died in early 2010 and even now, three and half years later, I'm not yet able to talk or write in any meaningful way about his illness and the effect it had on our family - maybe one day I'll have sufficient distance and strength to do so. My family and I have, though, tried to raise awareness of the disease through fundraising - a 10k run, a marathon and a Kilimanjaro climb (I hasten to point out that these athletic feats were performed by my sisters and my brother-in-law, rather than by me), and several years of ticket proceeds from Christmas musicals by the wonderful Mighty Fin. We have no such fundraising planned this year, so to mark Global MND Awareness Day I am volunteering as a steward this weekend at one of the ALS Association's Walk to Defeat ALS. Frankly, it's only a small contribution, but even a small contribution can help.

If you are interested to learn more about MND/ALS, why not head to one of these websites:

Or try to find a way to watch the film "I Am Breathing".

Or if you're moved to contribute to the charity, you can do so directly via the website, or maybe sponsor someone who is taking part in a walk or a run or a climb. Why not this girl (who I learned about via England cricketer Matt Prior on Twitter) - Or check out what the Broad Appeal is doing -

Or maybe just share this blog post. Thanks for reading.

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