It’s just over 8 years since my Dad got the official diagnosis of Motor Neurone Disease, which means that we’re now in the territory of having lived for longer without Dad than he lived with that diagnosis – that feels pretty frightening.
June is MND Awareness Month, and I’ll be the first to admit that this June I have been much quieter than usual in supporting that awareness raising. Now this is certainly not because I have given up, or don’t want to be interested, but more that I didn’t want to spend the lead up and aftermath of my wedding concentrating too hard on the horrific disease that meant my Dad wasn’t there to walk me down the aisle.
I’m very fortunate to have brilliant people to help fill those gaps where Dad’s absence was felt most keenly – my brother walked me down the aisle, and both my mum and brother gave speeches which I know would have done my Dad proud. My mum, two brothers and sister and all my family and friends joined me on the dance floor when perhaps, had he been there, I’d have had a dance with Dad. We danced to Toploader – Dancing in the Moonlight and it was such a special moment.
Even without Dad there, I had the best day of my life, and I know that he was in everyone’s thoughts throughout the day. I like to think that the thunderstorm that crashed over the church during the service was his idea of a giggle, while still making sure our day ran perfectly!
Tomorrow (21st June) is Global MND Awareness day. I remember seeing Awareness Day on social media several years ago, and it was so comforting to see as at that point very few people that I met knew about, or had even heard of, MND. Since then we have had the Ice Bucket Challenge and The Theory of Everything, both adding huge levels of awareness around the disease.
But that isn’t a reason to slow down; if anything, it is a reason to double our efforts and to carry on our fight against MND. With the threat of less money in various areas, it is essential that the global community rally for more funding for research in to MND, and more locally here in the U.K to campaign against cuts which will inevitably affect those who are vulnerable and living with MND, or caring for someone with MND.
And you can help.
– Share the MND Association’s tweets and Facebook messages over the next few days and share information with those who might not know anything about MND
– Sign up to the MND Association’s campaigns network; https://www.mndassociation.org/get-involved/campaigning-influencing/join-us/campaign-network/
– Become a volunteer or raise money – check out the website for ideas!
– Sign up to an event; our family and friends plan to run the Sheffield 10k in September, you could join us!
Whilst sometimes it may feel pointless, as though nothing is being achieved and like we are even moving backwards, if we look back to where we have come from we will see that is not the case.
I will remember how it felt like nobody cared, and I will remind myself of the £7m raised through the ice bucket challenge. I will remember how I felt when a shop assistant accused my Dad of being drunk as his speech slurred and thought we were making MND up, and I will remind myself that today that probably wouldn’t happen.
I will remember how we were visited by carers, social workers, doctors, nutritionists and speech therapists who didn’t really understand the disease and how quickly it could – and would – deteriorate, and I will remind myself that today, with more awareness and education, that others will hopefully not experience the same problems we did.
I will remember how, when Dad was diagnosed, that every person I told I had to explain what MND was, and I will remind myself how when I tell someone now that Dad had MND that they nod and understand the gravity of the condition.
I will remember that first Awareness day that I was aware of, back in 2010, and I will remind myself of all of the positive movement, not forgetting the negatives along the way, and I will feel proud to be part of a team working towards a World Free from MND.