Posted by: mads04 | September 28, 2013

Don’t let anyone tell you you can’t

This week I’ve been back at the Walton Neuro centre in Liverpool for assessment to see if I fit the criteria for a new clinical trial drug, I’m not messing but I’ve had more trials than mafia don John Gotti!! Anyway this new trial is for muscle strengthening to try to keep your muscles strong for as long as possible which then will hopefully extend life expectancy for MND/ALS patients. I feel incredibly lucky to have the Walton centre on my doorstep, the staff there are all proper lifesavers and lovely people,these are the real heroes in the world not the sporting icons or movie stars we see on our TV’s but nurses and doctors who do what they do for a small fraction of a superstars wages without fuss,my eternal thanks to these people can never be underestimated.
I’ve been on the drug a couple of days now an all I’ll say is I’ve been listening to me Pink Floyd albums a lot more, which probably tells you which state of mind I’m in at the moment!! (Spaced).The drug is called Tirasemtiv another scrabble winner!!
Since I’ve had MND I’ve had to fill in some strange forms and because it’s a terminal illness you have to deal with death questions and trying to get me to be serious about this is like trying to get a politician to tell the truth(it’s not happening) So with questions like “Have you ever felt like trying to commit suicide Mark”? My reply of “Yes,when filling this form in” probably never helped the cause!!!

I’ve also linked up with the MND Association for an awareness campaign in football,where football clubs can get involved trying to raise awareness for MND within their club.I will have a link shortly so please try to get your local club involved,the good thing about the campaign is it’s not just aimed at premiership clubs or football league but all amateur and kids teams not just in the UK but around the world.

We’ve also just completed our second album called Childhood memories which will be available soon & you can download a couple of tunes free here http://www.reverbnation.com/lastofadyingbreed4 . I’m extremely proud of this album, it’s been 24 years in the making(I was 16 when I first picked up a guitar).To make an album with someone who has been your life long best friend is unbelievable and when I say life long I mean someone who’s mum used to look after me from birth an make the best beans on toast ever!!! Willy taught me how to play guitar and the picture below shows me and Willy as kids with our families celebrating the silver jubilee in our street!

20130928-114353.jpg

MND is slowly but surely taking over my body,weakness is a big factor now,my hands and arms can no longer function like they used to hence the blogs becoming less frequent. But one thing MND/ALS will never take is my fighting spirit and the love and support of my family and friends,without them I would not be here.

I’ll finish with something simple,when my kids are trying something and tell me they can’t do it,my answer is always the same “There is no such word as can’t,if you put your mind to it, you can”

I think I’m living proof of that!
Keep smiling and stay positive and remember Don’t let anyone tell you you can’t .

To be continued

Mark

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Responses

  1. Mark, you are such an inspiration for your brave leadership in advocating for MND / ALS awareness! We cannot and will not surrender! Congrats on your album ~ I love your music! And, for your brilliant awareness project in football! Strong Healthy Vibes to you 😉

  2. Floyd? They really have got you on the strong stuff.

    Be sure to let us at Formby FC know when there’s details of the footy awareness campaign (media@formbyfc.net). I’ll see if I can get the league to promote it too.

    Thanks a lot for the blog, it’s brilliant to see how you’re really applying yourself. Big respect to you from all at Formby.

  3. Fantastic Mark, look forward to listening to the album. Your a natural with writing x

  4. looking forward to the football campaign

  5. I’ve never read a blog before, but Robbie fowler tweeted the link for this blog so I had a look and can only say, what an inspiration ,very touching and humorous at the same time. I’m now of to listen to your music mark, keep fighting mate.


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