Posted by: mads04 | June 28, 2014

The Final Whistle

If you look the word terminal up in the dictionary you will get the end or fatal and mostly terminal cancer or in my language fucked!! Cancer is a word they associate with terminal but what about all the other terminal illness’ that aren’t associated with cancer? Why do they get overlooked? In my world we don’t have treatment were as with most cancers you do, wether it be an operation or chemotherapy but at least there’s something to give you some sort of hope. With MND there’s Riluzole a tablet you can take that might give you an extra 3 months to live!! Fuckin ell what a bonus I hear you say!!

Trying to raise awareness by being positive with MND doesn’t sit right with the mnd association, In my opinion they want you to be in a wheelchair or being spoon fed by your loved one with your family looking on helpless, because more people will feel sorry for someone sitting in a wheelchair than preparing for a marathon or recording an album. Sad but true that’s the way of the world, when they asked me would I pose for a photograph with Jayne while she fed me I asked why? Jayne hasn’t had to do that yet it will happen a fact we are both aware of but this was 12 months ago when my piano playing days weren’t over!! I’ve always felt the MND Association never fully trusted me, I think they were worried I may say something that might look bad on them, whenever I’ve done radio or TV work they’ve made sure someone was there or tried to tell me what to say. Listen I’m the one living with MND I don’t need telling what to say about it! Even with the football awareness campaign poster it said “I lived for football but now I’m dying” I understand it’s an impact statement to get it noticed and it obviously worked because it’s the most successful campaign the association have ever had but I wasn’t entirely happy with that statement and the campaign only came about after a blog I wrote saying I felt underused by them because I was willing to talk and give my time to help raise awareness for mnd. Listen the MND association do some great work but I don’t think they were quite ready for me, someone quite young with MND with an opinion who’s not afraid to tell it how it’s is. I also think they missed a trick not promoting the football posters in the tube stations in London during the World Cup, it just makes sense to me that whilst people are going to or coming home from work looking forward to the footy on the telly if they see something with football on it they will take notice! I’m also disappointed with the English FA for not getting involved with the campaign considering ex England player and former manager Don Revie died from MND. The Italian FA have backed MND in their country because they have had a couple of players die with the illness but I suppose the English FA don’t see an ex manager important enough to get involved!!

For some reason the MND association refuses to promote my blogs, they always promote other people who are living with MND or just involved but mine must be that shit they just won’t encourage them!! They did the same with the albums we’ve made they’ll promote other music designed to help the mnda but again not ours. Do they realise how difficult it is to record an album with MND because let me tell you it’s fuckin hard work and they were both done to raise money for the cause.
I’ve never made a penny out of anything myself or my friends have done but the Mnda have made thousands out of what we’ve done and that’s the truth. I’ve only ever done what I thought was best for people with mnd, I’ll explain an example to you, my sisters work donated £10,000 to MND merseyside, an unbelievable amount and I asked the branch if we could split the money between people living with MND on merseyside (Myself not included ) I was told yes so I suggested £5 grand to a man called Keith who has been living with MND for 20 years and deserves millions never mind grands for the work he’s done whilst battling with MND and the rest split between another 5 people with MND . Keith has been going to Liverpool town centre for over 15 years in all weathers collecting money and raising awareness for MND, the man is my hero and the most positive person I know and I thought along with my sisters work he fully deserved something positive in his life, as did the other people. After being given the ok by the branch to distribute it this way the association got involved and blocked it for their own rules and regulations, one being we can’t show preference in were the money goes, fair enough but no one would’ve begrudged Keith that money in the MND world. Keith should be at the fore front of everything the association does regarding living with MND, his smile lights up a room and his courage is something we can only dream of. My sister rang the association up to see what the problem was regarding the money and after being told the reasons she was also told she could have the money back if she wasn’t happy with it! Serious??? To say that was a kick in the teeth is a massive understatement and when she told me this I was fuckin blazing as you can imagine? But one thing about having mnd is that it’s not wise to get worked up because you get shortage of breath and start shaking like a shitting dog!!

When I first started campaigning for MND in hindsight I should’ve set my own foundation up then everything raised could’ve went to the people with MND without any problems but I just thought I was doing the right thing at the time. Another thing what pisses me off about charities is that they will always arse lick so called important people who they think they might be able to help them, an example being an MP in Liverpool called Stephen Twigg who’s supposed to be a patron for the Merseyside branch but to my knowledge has done fuck all for people living with MND in my area although he did actually attend a ball the branch held, it cost me my family and friends £30 each for our table which I haven’t got an issue with but him and his guest never had to pay a penny! Have a think about that?? that year I’d ran a marathon, jumped out of a plane, recorded 2 albums and fronted the biggest campaign the association ever had all whilst living with MND but still payed the £30 required for a table to attend and this clown got a freebie!!

This blog might sound like I’m against what the association are doing, far from it like i said earlier they have some good people working for them and even better volunteers and without them life for people with MND would be a lot harder. The volunteers in my opinion will always more passionate about MND because they have been touched personally by the illness.

I’ve worked it out officially I’ve completed 86 miles with MND in marathons or 10k runs I’m hoping to do 100 miles with MND it’s going to be a big ask because my legs are getting weaker but god loves a trier so we’ll see what happens, I’ve put a lot into raising awareness for MND over the last few years and I’ve achieved more with MND than most people have achieved in their lifetime. I’ve always appreciated my family and friends support and without them I couldn’t have done all the things i have with MND. Please keep supporting the cause because like I’ve said before a cure will not be found in my lifetime but it is out there and it needs to be found to prevent future generations going through what myself and so many other MND warriors go through every day now.

The final whistle has blown but I’ve took MND into extra time, this a match I still feel I can win, MND is a 90/10 tackle in its favour and anyone who played against me or seen me play will know I fuckin loved a tackle so prepare for a two footer MND it’s coming!!!

Stay positive and enjoy today because you never know what tomorrow brings .

Thanks and keep smiling
Mark

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Responses

  1. Mark, while I appreciate the work and enthusiasm you have put into campaigning for mnd, there is always the other side that is working on the cause and making an impact . It is really a trying time for all mnd families and friends. But one thing I am sure that an umbrella body like Mnda provides an invaluable voice for Mnd community. Stay strong and allow us to keep in touch. The work you have done has not gone unnoticed , a truly great warrior you are.

  2. I can understand your frustration with the MNDA National Charity, I expect most of the big charitable organisations get into the same mind set, geared up like a business, focussed on image and revenue returns. Images of suffering and hardship rather than achievement and optimism seem to be all they are interested in. Did you read this article last week? The guy is inspiring – he reminds me of your attitude and has a passion to keep going, which is what I think the MNDA need to recognise and learn from. Best wishes. http://www.bbc.co.uk/news/technology-28041743

  3. Love you mate

  4. You are so encouraging, Mark!!! A true MND Warrior!


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