Posted by: mads04 | December 23, 2013

Merry Christmas

Christmas comes but once a year and for someone with MND/ALS it’s a very strange time. You want to enjoy it because it’s a special time especially with 3 kids to enjoy it with but there’s also the thought of will this be my last?
I know it’s not the thing to think about but it’s very hard not to. MND is a death sentence wether you like it or not that’s the way it is! But I also realise I’ve got the best christmas’s ahead of me and each one I achieve with MND is better than the last one simply because you appreciate it more!! Fuck off MND!!!

So when Christmas comes along I always make the most of it, the build up to the big day is unbelievable , talking about were father chrimbo is to the kids and seeing their faces light up is something that makes me happy. Panicking because they change their little minds about what goes on their Xmas list at the very last minute! I always weigh up the positives and negatives of having MND. Some might say how could there be any positives to a terminal illness but trust me when you haven’t got to get in the loft anymore to untangle a shit load of Xmas lights and get the Christmas tree down,to me that’s a positive!!! Plus you don’t get asked to write Xmas cards or wrap up prezzies!! I’ve had to get my 13 year old lad to write Jaynes Xmas card this year and with him being a typical teenager he wrote To Jayne Love Mark!! Don’t go over board mate!!!
Another positive of having hands like jelly is you get out of doing the Xmas dinner dishes and the biggest positive to me is that I no longer have to swear with frustration at the putting a bike together instructions on Christmas Eve!! I can eat as much shite as I want because the dieticians are always happy when you maintain your weight so I’m sure there’s some of you reading this thinking that’s definatley a positive!!! (Selection box problems!!)

I’ve achieved incredible things this year with the help and support of friends and family from skydives to marathons to recording another album to fronting an awareness campaign for the MND association in football. I’ve also spoken publicly on living with this killer disease in my own way with humour and tears!!
I’ve always been a very private person but MND has flung me into the public eye, something I’m not always comfortable with but I always know why I’m doing it. I do it to help get this terrible disease recognised so future generations won’t have to go through what myself and so many other MND warriors go through now. A day will come were we have a cure I’m certain of that but it will only happen if we all have a go at raising awareness to create funds for research!!

So please enjoy Christmas and thank you for all your support this year

Stay positive and more importantly stay smiling

To be continued




  1. Chrismas is a magical time with all family members pulling together, trying to keep our spirits up, we no how hard it is to stay happy coping with mnd, but we do it to show our appreciation for the help and support we receive every day from our family and friends.
    Keep the faith Mark, the new year might bring a cure, thats what I keep hoping for, Newcastle might win the league aswell ha, more chance of being cured!!,
    All the best mate.
    Toon Alan

  2. You brought tears to my eyes – having a tough day after trying to help with getting the house ready for Christmas – never learnt to pace myself! I hope you and your family have a wonderful Christmas and many more to come. Don’t let this shitty disease win over your great attitude.
    I “won” the MND Lottery -diagnosed 3 months ago with the very rare PLS type. Walking with crutches and struggling to still do the things I love. I laughed at your description of relief at not having to do the loft light thing – get that totally. Stay happy and as healthy as possible.
    I’ve got a photography blog come diary of a stubborn bastard refusing to let MND grind me down. Try taking photos whilst balanced on crutches!
    Happy Christmas. Miles

  3. Your Blog is magic Mads, for two reasons which spring to mind immediately. Firstly it’s just inspiring to anyone and everyone who reads it just as you are to everyone who comes across you.
    Secondly, no matter where I am when I read it, it always manages to put something in my eyes which makes them water uncontrollably.
    Have a great Christmas Pal, keep fighting


  4. Merry Christmas Mark,

  5. Flung into the public eye indeed, but is there a better embassador for MND ? Highly unlikely.

    Another Christmas looms and your three children will be with their cherished Dad. Few will be prouder !!!!

  6. Love your sense of humor, Mark! They’re all our ‘realities’ with MND/ALS! And here comes another holiday we’ll LIVE through without doing dishes, wrapping, writing.. I’m sure your kids bring you happiness in this exciting season. Stayin Strong & Smiling! XX

  7. Always can rely on you mate to bring humour into a serious situation we, who live with MND find ourselves in! For me and the missus Christmas starts in earnest at our friends Di n Dave’s house tonight, followed by Christmas morning breakfast cooked for us by our son James and his wife Emma, ably helped by Archie 3 and Leila 1. Christmas lunch is at our daughters Lisa’s house with most of the family, including Jack ( back from Florida) Tess and Josh. Son Steven is at sea over Christmas and Boxing Day lunch is at our daughter in law Charlie’s and granddaughter Meghen, with all the family being catered for. We are so lucky to have friends and family living here. Merry Christmas to all! Stay Strong, Stay Positive. X

  8. I agree with every word you have said for my Christmas with MND x
    We had an engagement of my eldest son to celebrate on top of Christmas
    Keep fighting buddy & my little Amanda Charter Bear will be with you for the Mongol Rally xx

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