Posted by: mads04 | August 29, 2014

“You ain’t got nothin to lose”

People run for charity every year and whatever charity you choose I salute you, if your healthy enough to do one you really are making a difference to that charity. The ice bucket challenge is a lot easier unless your a fuckin scruff and your terrified of water!! The IBC has now raised around $100 million in America and over £4.5 million in the UK. I’ve read there will be $1.5 million to be being used to start a new clinical trial in the fight against ALS/MND in 2015 so straightaway the money is going to good use. The people who have had a moan about the IBC should know that for the people who they claim to be attention seekers haven’t just threw a bucket of ice of their head but actually donated. (Can’t stand miserable people!)

I don’t think anyone could’ve imagined how successful the IBC has been not even Peter Frates who’s idea it was. I done a talk 18 months ago at the MND Association about living with MND and how I was trying to raise awareness. I remember stating how important it was to get a younger generation involved and try and educate them about MND via sports and social media, I also remember half the room looking at me like I was talking shite. I’ve even been told by an mnd volunteer that another volunteer for the association called twitter “the devil”. Fuckin ell I forgot we were still burning witches at the stake!! MND has largely been seen as an old persons disease so I understood why half of them weren’t convinced by my talk, but I’ve seen and met enough people under 30 with MND to know that it can affect anyone at any age. The ice bucket challenge is the best thing that’s happened to ALS/MND campaigns and I’m just glad I’m alive to see it, but the hard work starts now it’s vital that we keep the momentum and don’t just pat ourselves on the back and say well done! I can’t even pat myself on the front never mind me fuckin back!!

The hard work starts now, we can’t live under the “We’re only a small charity” now, the IBC has put Mnd on the map.
The MNDA need to grab the initiative and keep moving forward, not to far forward were they forget the people who are living with it now. I hope the money gets used wisely, as much as a cure is vital so are the people who are living with this horrible illness. Quality of life is important, I’ve seen ridiculous things when it comes to funding for helping people with MND. They’ve never had this type of funding before, I hope they use it accordingly.

100 miles with MND/ALS

Let me try and explain what it feels like to do 100 miles with MND. Try walking round for 6 hours with a 20 kilo weight in each hand, feel how much it pulls your shoulders, by the finish line it’s like carrying two bags of cement round for 26 miles. Try running 800 meters full blast then think how hard 26 miles out of breath is like! My lung capacity is 44% at the minute to give you an idea. Try walking with 10 kilo weights on your legs, shuffling your feet for 6 hours and instead of taking water on board via your mouth imagine having to stop every hour to have a syringe filled with water pumped into your stomach in your peg tube to try and keep you hydrated. Imagine your worst muscle cramp then imagine it in your neck, it stops you in your tracks for a minute at least every 2 miles feeling like your windpipe is closing over, you have to stand completely still to let the cramp pass. Now you know what I do to help raise funds and awareness for MND so what exactly was your excuse again???

I found out this morning of a fellow MND warrior losing her battle with the illness, no one wins in the battle with MND that’s the reality of it. RIP Colette a true #MNDWarrior. thoughts are with you Matt x

Bob Dylan wrote in a very famous song “When you ain’t got nothin’ you got nothin to lose” that’s the way I’ve felt for the last 4 years living with Mnd.

Thanks for all your support

Mark

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