Posted by: mads04 | February 17, 2013

A new Life & Cap in hand

The day after being told I had MND I had a phone call off the chairman of Leigh Genesis who I was managing at the time to tell me unfortunately due to resources and results I was being sacked(what a fuckin bad week this was turnin into!!) and even though I shouldnt have been bothered after what I had been told the day before, I was. I had put a lot of time and effort into that job as had others and we were trying to play football the right way with a young team and I had even played as a sub the day before I had my MRI and EMG test even though I was skinnier than Peter Crouch! Everyone around me had been on my case to get me boots on and play again to add a bit of experience(& skill!) to the team but I had been telling them the team were good enough to play without me because really I couldn’t have played, I was donald ducked. One game I came on as a sub and I was stuck in the loo for 20 minutes shaking like a shiting dog and i weren’t even on the toilet!.To be fair to the chairman he had no idea as to what was going on with me, him and the club secretary Mary had always been supportive of me and were genuine people who loved football and I would never have felt aggrieved by their decision.

After coming back from Germany and seeing my oldest son get a silver medal(emotional) I figured I would give it until after christmas then try to tell people I had MND without it becoming major news, which in a city like Liverpool is near on impossible,but after a couple of weeks it was killing me to keep it to myself my head was all over the place thinking too much about the future and i was becoming a bit of a prick to be honest argumentative and snappy, so I decided to tell Jayne in the hope that a problem shared is a problem halved,the Sunday before Christmas day I asked Jayne to sit down as i had something to tell her and by the look on my face she knew I hadn’t won the lottery! “I’ve got MND” I told her and after explaining briefly it was terminal Jayne got up grabbed her car keys and went out the house crying got in her car and drove off, she had left her phone on the table so I couldn’t even ring her and im sat there thinking well that went well knobhead! after a couple of hours she came back and we tried to deal with it the best we could.To be fair Jayne didn’t get off on me because she never cared, far from it that was just her way of dealing the seriousness of the situation i had just put her in.I didnt want my Dad,Brothers and Sister knowing until after Christmas and she agreed to go with whatever i thought best.My dad who was 83 at the time was living with my sister and her husband and was beginning to lose his marbles a bit so if i would have told him i had MND I would have been telling him everyday as he often forgot what people had told him the day before(He was great to borrow money off though!!) and one plus from the fact i have MND is knowing that when my dad passed away last year he never knew i had it or had to shed a tear for me. RIP Harry.(Legend)

I’ll be honest here for a good few months after being told, I wasnt an easy person to be around I might have come across as trying to be positive but because I keep things to myself it wasnt easy and i can only apologise to people if i was a bit funny or acting like a tit with them but hope you understand the state of mind I was in.You may think that being told you have a terminal illness that it’s the end of your life and you are going to slowly wind down until you are sleeping with the flowers but after the initial few months I think that im starting a new life and definitely living for today i have no choice i cant start planning for next month never mind next year but strongly believe that with a strong mentality and will you can achieve anything you want to so now everyday is not the end of an old life but the start of a new one.

Raising money and awareness (Cap in hand)

Theirs over 3 million people living in the UK with a terminal illness so that’s over 3 million people and their families trying to raise awareness and money for whatever themselves or their loved ones are suffering from and i praise them all.MND is not well-known in the UK its associated with people on average who are 50 and over but i have noticed since I’ve had MND that it doesn’t give a shit how old you are,theirs a trend at the moment of younger people getting it.I read the other month of a 12-year-old boy in America suffering with MND or as the Americans call it Amyotrophic lateral sclerosis (ALS) how bads that were a disease normally associated with older people is now attacking children!

The government don’t give a shit about MND in the UK. The MND Association is funded through people and organisations who raise money through various events they do and they are all fantastic fundraisers but why do we have to go cap in hand for money off the public, im not the sharpest tool in the shed when it comes to maths and numbers and my theory of the UN just printing money for research and cures for all terminal illness’ would probably fuck the world’s economy right up but im a strong believer that there is a cure out there for all diseases we just need the funds to find them.

I have recently been on a trial drug called Dexpramipexol (Its a fuckin winner at scrabble). It was a trial in which there was a 50/50 chance you were on the drug or a placebo. Just over 900 people worldwide were on the trial with half on it and half not, it was at phase 3 which in normal terms means it was close to being a winner. On January 4th this year I received a phone call from the clinical trials unit in Liverpool to tell me the trial had been stopped because there was no evidence after 18 months it was helping the people who were on the real drug.(Happy New Year!!) Now i knew all along it was a trial and not to get my hopes up but in the back of my mind i was hoping as everyone else involved in it, that it was the cure or maybe a drug that could just increase life by a few more years. You can’t help thinking it may have been stopped even though there might have been evidence it had slight improvement in some people but financially it may be that the pharmaceutical company that funded the trial never had enough money to complete it.That’s not knocking them im sure they were as gutted as everyone on the trial and worked tirelessly for the cause but sadly that’s the world we live in.We shouldnt have to go cap in hand to raise money, the money should be provided to find a cure by the worlds governments.We shouldnt have to go cap in hand to raise money for children’s hospitals to provide parents a place to stay while their sick kids get treated.We shouldnt have to but we do.Would’nt it be nice to live in a world were we don’t have to beg for help?? In the words of one of my heroes “You may call me a dreamer,but im not the only one”…

A cure is out there,trust me.

I have been extremely humbled by the response I have had to my blogs and im grateful for the kind comments,I’m so glad that they have helped some of you in your lives.I am just a scally from Liverpool who needs inspiring myself from time to time and i have met people who have been living with MND longer than me who are far more inspiring than I am and have done loads more than I have to raise awareness and money for the cause so why don’t you go on the MNDA website and try to find them.You never know they might just inspire you too.

To be continued

Mark

 

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Responses

  1. Another brilliant part of your blog Mark, the laughter as well as the tears, you truly are an insperational man and were all really proud of you.xxxx

  2. amazing blog, you’re an inspiration to others mate x

  3. Great read Mark, you have a natural ability to write and make it interesting with humour too 🙂 . Real as it gets!
    Look forward to the next blog. Nice 1 Mark
    Carla x

  4. Hello there. My son is in the same place as you. Diagnosed in May 2011 aged 38. Football player, fit, non smoker. Why? I ask myself every day. Why him? Have you ever used neutritional supplements (shakes) I am convinced that the high Glutamate content in these if what caused the MND. Would love to hear from you .

  5. 10/10 Mark haha. Made me laugh quite a bit as usual! Saw MNDA shared this on Twitter with a strong language warning haha. Typical scouser! Keep up the good work xx

  6. How many goes did you have at writing Dexpramipexol? Another good read and source of inspiration for when shitty little problems seem bigger than they are.

  7. Hey Mark,

    Love reading you blog; although it brings some painful thoughts to mind, its a cracking read.

    Speaking of the governments ignorance towards MND research, would you consider linking to this e-petition my Uncle setup after my mothers passing? http://epetitions.direct.gov.uk/petitions/43093

    Keep battling chief!

  8. A great read lad , stay strong and fight the fucker with a smile on your face. Inspirational

  9. Maddo. Wow. Just heard about your condition and your battle ahead. Can’t be as hard as the battles we had at corners can it… Looking at your blogs and what you are doing is an inspiration to many people not at least your family. I’m involved in football so if you need anything for raffles or want to go to a game let me know and will try my best to help in that very small way.

    We didn’t know each other off the field but on it you where a leader of men and i always knew I had a battle on Everytime I played against you. I always knew it was a fair fight and we always except probably one game shook hands and hugged at end of game.

    Keep the fight going and keep in touch and look forward to your blogs in another 2 years.

    Martin

    X

  10. Another brilliant read Mark. Your are an inspiration to everyone. I hope and pray you keep on writing them for a very long time

  11. Such a funny man not you knobhead Harry . RIP H . Keep going mate

  12. Hi my husband is the same. Diagnosed at 38 in sept 2010, went on dex trial…got call to say it’s ineffective after being on it for 18 months.. and now trying to make most of life with our young daughter. Awareness is key. We have already lost 3 friends who were diagnosed at the same time as my husband, so it is a frightening, sad and cruel disease. 😦
    All the best.
    Kiran
    X


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