Posted by: mads04 | May 25, 2015

Mime for MND 

I’m currently writing a book called 100 miles with MND. I’m writing it using my eyes so expect it to be available some time in 2025!! No seriously I’m just trying to get it out as soon as possible, hopefully I’ll put into words the tears, the laughter, the people I’ve met, the things we have achieved and basically the emotional roller coaster I’ve gone through whilst fighting “The worst disease known to science.”

My eyegaze system, life changing technology for someone living with Motor Neurone Disease

Around this time last year the world was bracing itself for the ALS/MND ice bucket challenge. The awareness raised by MND/ALS Warrior Peter Frates’ brilliant idea was phenomenal. He is a truly remarkable man, one of many MND Warriors world wide.

It’s MND awareness month in June and the MND Association have launched a silence speaks campaign were you can do a sponsored silence and try and understand how difficult life is when you can’t talk, trust me it’s a nightmare. You can find details here on how to get involved. http://www.mndassociation.org/ 

In Australia they are currently promoting #FreezeMND to help raise awareness for MND. Our friends down under always get behind MND campaigns and it’s good to see this campaign doing well. You can find out how to get involved here http://www.freezemnd.com 

When I was diagnosed with MND in 2010 I joined up with my mates and we released an album (A CD if you were born after 1995!!) and believe it or not I sang on the album! I’d never sang before but thought fuck it why not have a go. To my surprise and everyone else who knew me I wasn’t to bad. I actually enjoyed it if I’m honest and two years after diagnosis we performed a gig, singing all our own stuff and raised more than £14,000 for MND Merseyside branch. It was a fantastic evening and one I’ll never forget, to be on stage with you’re mates singing you’re own songs whilst living with MND is something I’ll cherish for the rest of my days. To be able to do this with a disease that kills half the people diagnosed within 2 years, shows just how lucky I am. I still don’t know how the fuck we done it!! Me and my mate Will released another album (CD) a year after that so we’d brought two out whilst fighting MND, not an easy task trust me. 

http://youtu.be/eE3AVdiHuOo Here’s us performing “Love on my mind” on the night… 

Unfortunately MND has put paid to my singing days and there’s probably a few people out there saying “Thank fuck for that!” 

I can’t really talk anymore never mind sing so it gave me an idea regarding an awareness campaign. 

#MimeForMND were you mime to you’re favourite song with you’re friends or family or if you’re feeling brave go solo! You can use a hairbrush for a microphone, a tennis racket for a guitar, pots and pans for drums or simply use imaginary instruments. The main thing is to try and have fun with it because life’s to short not to smile even living with MND. 

Listen, I’m not expecting it to be anywhere near as big as the IBC that was a complete one off and it gave MND/ALS a voice.(Excuse the pun!) This is just something that’s very personal to me in more ways than one. 

The idea being if you have MND, over time you will lose you’re voice aswell as you’re life. You need to write on a card or piece of paper why and who you are miming for and #PassItOn through social media under #MimeForMND 

So if you know anyone in a band or a singer please try and get them involved. The more awareness we raise the better and hopefully people will jump on board and have a laugh whilst getting the message across. 

We done a couple of songs for #MimeForMND the first one being “Killer within me” a song I wrote whilst sitting in a wheelchair in hospital just after getting my peg tube fitted. It’s a song about living with this fucking illness but putting a positive spin on it at the end.

https://youtu.be/9igRBnKnqws you can view it here. 

Our next #MimeForMND was Supertramps “Give a little bit” a favourite of ours although when I turned up to Wills to film it with an inflatable saxophone both Willy and Peter looked at me like I was round the fuckin bend. 

https://youtu.be/jJ6JZPpTlIU you can view us and my boss saxophone here… 

We need to do as much as we can to raise awareness for MND. Each month I get personal messages off people telling me they’ve lost a loved one to MND. They are tough for me to read but they also inspire me to keep on fighting along with other MND Warriors to get this disease recognised and hopefully one day find a cure to stop family’s being destroyed by the monster that is Motor Neurone Disease. 

Thanks as always for you’re support it really means a lot and remember keep smiling. #EnjoyLife 

To be continued… 

Mark 

AKA Billy bad singer!  

Willy on lead guitar.

  

Peter on the mike with his “Love song” face

  

The boys

  

On stage giving it loads

  

Thank you and goodnight

    

Our second CD recorded whilst battling MND. Willy and me pictured with our families around 1977 “Childhood memories”

  

Willy on banjo (Deliverance!!)

  

Rehearsing “Justice496” written with honesty and for the 96 and their families who never stopped searching for the truth.

 

On stage in my element #MNDWontBeatMe

 

You said it Bob…

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Responses

  1. Just keep going for the sake of all MND sufferers. Well done! Adrian’s Dad x

  2. Il be honest i never knew much about MND before my 50 year old uncle (in law) was diagnosed in June 2013. I then researched the hell out of it. I have spoken to medical proffessionals where i work and they admit its the worst diagnosis they ever have to give. This evil illness slowly took away every bit of independance he had, quite quickly, especially over the last few months. everything except his witty sense of humour, he used to have his carers howling laughing. I am sat here filling up thinking of what has happened to him, He was brave enough to sit with his beautiful wife and word his own eulogy whilst my aunty had to write it. Hes wrote letters to his three children and three grandchildren, one whom was only born a few weeks ago. Sadly only 5 days aho we buried my uncle and gave him the most amazing send off. It now breaks my heart thinking of my aunty and cousins who are all just so lost without him. His passing has hit me hard more than some of my own families deaths. He certainly was another amazing MND warrior and i for one, will never forget him, or his battle and his braveness.
    Thank you for this blog, its difficult to read but so inspirational. X

  3. Hi Mark inspirational read as always.
    Love the MimeforMND idea, I have posted my video on facebook of me lipsynching stevie wonder and had great fun.
    I think it will go viral if you use the nomination idea, that’s how the ice bucket went viral.
    Scotty’s video was also brilliant although I reckon he just wanted an excuse to wear a wig and a dress….have sent him a friend request on facebook so would love him to show you my effort.
    All the best Mark, please keep as strong as you can I am sure you have been winning a mind over matter battle with MND and you continue to inspire and my lipsynch vid reached a friend in Australia who’s father suffered from MND so your small idea has already gone around the world 🙂
    Mark Murray

  4. marc mad dog Maddox worst right back in tuebrook haha


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