Posted by: mads04 | November 5, 2015

Don’t believe the hype 

Some doctors tell you how to live when diagnosed with a terminal illness, “Relax, take it easy, don’t exert yourself.” Yeh right, I’ll relax when I’m brown bread! They mean well but everyone’s different, different mindsets, different body’s, different fuckin everything. 

I’m lucky in a strange way, in that from day one most of my medical professionals realised early on I wasn’t going to go home and wait for the grim reaper to come and get me! My professor has always gone with the flow with me. She’s never told me what’s right and wrong, she’s only advised me. Although I’m sure she scratched her head when I told her about the first marathon we done, the thing with MND is that you don’t get better you only get worse, so I understood everyone’s concern especially with MND  being a muscle wasting illness. Your meant to try and build muscle leading up to a marathon so I and everyone else knew we were sailing into unknown territory. Fuck it, we only live once don’t we?. 

I’ve read some excellent reports about how to cope with MND over the last 5 years, but I’ve also read some absolute shit on the subject. Reports on how a cure can be obtained in China, India and other exotic places. Of course nothing in life is for free. For the small amount of around £20,000 these so called Drs claim they’ve discovered a wonder drug that will cure you. Trust me, if it worked my professor would know about it. I trust her and I trust my clinical trials nurses even more. The MND community is an extremely vulnerable one. People try and succeed in exploiting this for their financial gain. And because we have nothing to hope for we will try anything to help us survive, snake venom, spider venom, fuckin shark snot. If someone offered us dragons blood we’d take it. I know it sounds like a potion from a Harry Potter film but honestly you’ll be surprised what people will try in a life and death situation. There’s vultures out there that prey on our community and the longer we go without a cure the more desperate we become. This is something I hate seeing. It’s not nice reading about someone in the same predicament as yourself being exploited. 

Have I ever thought about trying snake venom etc? No, but I don’t blame people who explore these avenues, the only thing I’ve got in common with a snake is that we both fuckin rattle from time to time.!! MND Problems. My positive mindset is my weapon against MND, Oh and the odd spliff (Thank god for Pink Floyd!!) 

I’m having terrible side affects off that snake venom!!! Enjoy life…

Speaking of dragons, not so long ago my lad Vinny who was 8 at the time asked me, “Dad, you know dragons? Are they real?” “No mate, but when you’re older and you go for a bevvie in town with your mates, you might bump into one!”  

Please keep supporting the MND community, and MND awareness. 

Keep smiling and stay positive. 

To be continued…


Posted by: mads04 | October 19, 2015

Forever young 

My oldest son (Sonny) is 15 tomorrow. He was 10 when I was diagnosed, I’ve watched him grow from a child to a young man. At diagnosis I never dreamed I’d see this day. He will never know life without MND, I’ve watched him over the last 5 years blossom into a young man. The way he deals with MND is phenomenal. He’s always willing to help, he’s been on a first aid course to help him with the basics in case it’s needed(I hope not). He’s never in trouble in school, he’s a quiet kid who’s respectful to everyone he meets. He’s a bit too quiet if I’m honest, sometimes I wish he’d say more about MND but I suppose it’s his way of dealing with it. I often wonder what my kids think about MND but I’m often scared to ask. When I fell the other morning my son was the first to find me, it was 7.30am and he helped me get up and seen my head cut. Then he went to school, he’s doing his GCSE’s and it upset me to think that he had to sit in school trying to concentrate on his work with a picture of me on the floor unable to get up with my head bleeding. Not the best start to you’re day is it??

I’m proud of him, I’m proud of all my family. We deal with shit that you wouldn’t believe. MND is a fuckin crazy arse shit world. It’s an extra ordinary illness that affects ordinary people and worse still it’s affecting ordinary kids who’ve had there whole lives changed by the worst disease known to science. It’s not an old persons disease it’s affecting more and more young people every year. 

Happy birthday Santino, I wish you never knew what MND was but you’re strength gives me strength. I love you more than you will ever know and thank you for being there for me. May you stay Forever Young X 

Please keep supporting MND awareness, we are a vulnerable community who never asked for or chose to get MND. Sometimes Shit just happens!

Keep smiling and make the most of every moment you get with you’re kids, a positive outlook on life will get you further than a negative one. True story. 

To be continued…

Mark IMG_0192-1IMG_0190-1 






Posted by: mads04 | September 27, 2015

When the going gets tough

How do we define tough?  Is it a man willing to fight? Maybe. Or is it a young single mum trying to raise a couple of kids? Toughness is seen in many different ways. Most men see it as being a hard man, someone who can have a go. For me, personally, It’s raising a family. Trying to raise your kids to be polite, have good manners, respect each other and basically try and be a decent human being. 

Being a parent is the best job in the world but it’s also the toughest, being a parent with MND is a fuckin nightmare. 

I watch some reality programs on the telly and wonder what the fuck are these people on? These so called “Celebrity’s” live on another planet. They say they’ve been through hell to get where they are today and that they’re “Tough bitches”. If they want to know what tough is they should try my sisters cooking!. To these deluded idiots  “Hell” usually means they broke a nail or there fake tans ran, and that’s just the men! Being tough when I was growing up was having a fight and trying to prove your toughness. Nowadays your tough if you get a chest, back and crack wax without crying. Lads are spending longer in the mirror than their girlfriends. Seriously, If you’re a girl reading this and you’re fella spends longer than you getting ready for a night out, start worrying because he loves himself more than he loves you!. I see footballers roll around on the floor screaming in agony with a broken shoelace. A player gets injured, goes down holding his ankle with one hand and fixing his hair with the other. I don’t recognise the game anymore. Maybe I’m getting old or maybe I just preferred a time where people weren’t so obsessed with themselves. 

When living with a terminal illness you analyse things a bit more. I see people crying about shit that doesn’t matter. The towie firm moaning that they’ve found a spot!.Hold the press!! This is actually front page news.  I worry about my family and their future. Let me explain what being tough is. It’s getting up every day knowing a loved one can’t dress themselves, feed themselves, wash themselves and having to get the kids ready for school whilst that person is slowly wasting away.  It’s putting a smile on your face everyday telling everyone “I’m fine” when really your not. It’s worrying about money issues when you can’t work because you’ve become a full time carer. It’s not being able to have a night out because you’re on 24/7 MND call. It’s watching your friends slowly becoming distant with you because they don’t know what to say anymore. Outliving your welcome with MND is a common trait if you live beyond your  2-5 years sell by date! It’s trying to explain to your kids why daddy’s choking. It’s because he’s drowning in his own saliva. Try making sense of that to a 6 year old. Kids should enjoy their childhood. They shouldn’t see their dad falling over because his legs are wasting away. MND is a tough world to live in. 

Being physically tough is all good and well but being mentally tough is a completely different ball game. Everyone is fighting there own personal battle, It’s how we deal with our problems that defines how tough we are. Myself and my family have to adapt every single day to what MND throws at us, I’ve just recovered from a chest infection, after a week of antibiotics. I woke up the other morning thinking I feel ok today, then got out of bed and fell over, landing on my face and cutting my head. Welcome to life with MND. One minute you think your ok the next your tits up on the deck with more cuts than Rocky.!! 

Please keep supporting people with MND. It’s a tough life but rarely do you see us moan. Keep smiling and remember the next time your tan runs or you break a nail… There’s always tomorrow! 

To be continued….


Since my last blog we’ve lost a couple of MND Warriors that I had the pleasure of connecting with via Twitter. RIP Chris and Mark. We continue the fight! 


Posted by: mads04 | August 30, 2015

Mime for Mnd part 3 

The mime for MND campaign was brilliant and for me it was a huge success. To see people involved with and living with MND have such a laugh was brilliant to see. There’s not much to smile about in the world of MND. That’s a fact.  My whole intension was to get people with MND to smile and enjoy the videos, which they did so it was job done for me. 

For those of you who asked me why the MND association never got involved with Mime I’ll try and explain their reasons,  Firstly, I was told by Chris James who works for the association that Mime for MND was a brilliant idea but the association can’t back it because people might get confused with their own silence speaks and last summer campaigns. Seriously, does he think that people who raise awareness for MND are fuckin thick? That they can’t figure out the difference between the campaigns?. I emailed him back asking them to reconsider, as I and others living with MND felt it was a great way to raise funds and awareness using music and laughter. Then he gets back to me claiming they can’t get involved because of copyright, he was scared of being sued by musicians whose song they might use. Ok, fair enough I thought. I told him they can use one of our songs or someone who’s recorded a song for MND. He never answered this. 

I found his comments strange to say the least but it’s not the first time he’s talked through his arse to me. The truth is they never wanted to get involved and seen mime as competition to their own campaigns. I told them the minute we start competing with campaigns were doing it wrong. it’s not like were flooded with money and awareness raising ideas now is it? I couldn’t believe they would react like this but it didn’t really surprise me. I found a lot out about some people involved with MND during June. That some of them are yes men and terrified to rock the boat a bit. Let’s have one thing right if you’re living with MND or caring for a loved one, you don’t want someone who’s scared to speak up for you in your corner do you? I tried to be as diplomatic as I could but the final straw for me was when they completely ignored the kids who filmed there own mimes, including my own 9 year old son. That to me was just taking the piss, we are meant to be encouraging kids to get involved with MND and try an educate a younger generation, not ignore them. 

I’ve nothing in common with the hierarchy of the association, I’ve said for a while now they are snobs who are stuck up their own arses. The emails I’ve had with Sally Light who’s the chief executive of the association just confirmed my opinion of them. She had more excuses than a pregnant nun for not getting involved. Of all the illnesses in the world trust me to get one that’s ran by snobs!! I would never try and discourage anyone from raising money for the association, far from it. They have good people who work for them but they are restricted by the association’s out of date policies. 

They are doing a new campaign starting 1 September #Tea4MND you can find out how to get involved here 

Also a mate of mine from football is doing tough mudder for MND you can sponsor and read why he’s doing it here thanks Paul appreciate your support mate 

I’ve also seen people who work for them who’ve attended MND events and not lifted a finger all day, whilst MND volunteers ran round like headless chickens trying their best to please everyone. Money for old rope comes to mind.  

I was told by Sally that they won’t promote my blogs( they defo won’t promote this one!) because I swear in them!  Living with a terminal illness believe it or not does make you swear, I’ll guarantee that if the Queen got MND she’d be screaming “Fook ooof MND” when her hands won’t work and she can’t wipe her own arse whilst sitting on the throne!!  I wouldn’t wish this shit on anyone by the way. I also swear because I’m trying to relate to a younger audience who believe it or not swear to! I’ve worked with enough youngsters to know that if you speak normal day to day talk, they listen better than trying to talk politically correct to them. The youth of today are the cure for MND. 

MND doesn’t discriminate so why do the mnd association? It doesn’t matter if you’re black,white, pink or blue. Old or young, man or woman, straight or gay. MND doesn’t give a shit what you are. The one thing I’ve noticed is that people are being diagnosed with MND younger and younger, I don’t know the reason for this but it’s heartbreaking to see. We cannot live in the past and expect to see results. The association needs to come out of the 1950’s and move with the times. I’ve had world champion boxers and ex UFC mixed martial arts fighters pose with me for pictures with mnda t shirts. They have supported the cause regularly and are amongst the most genuine men I’ve met but because some snobs see boxing and MMA as a contact sport and even though there is no scientific evidence linking MND to boxing or MMA they refused to promote there support. The boxing and MMA audience is huge and refusing to get involved because of out of date views shows how small minded the association are. They promoted a football campaign yet there’s more ex footballers diagnosed with MND around the world than boxers or mixed martial artists, so how does that logic work? again discrimination at its worst. 

It’s 2015 now. Raising awareness for MND is tough enough with putting restrictions on it. 

I’m still trying to get my book finished, so hopefully I’ll get it finished soon. 

Thanks for your support and please keep supporting MND awareness. Everyday someone’s life is ruined by this horrible illness. 

Keep smiling and swearing!! 

To be continued 


Ps I’m not on Twitter anymore so I can’t read any messages I might’ve had over the last 2 months, but I know people have been asking over me. Thanks to all those concerned I’m absolutely fine and fuckin dandy!!! 


Posted by: mads04 | June 1, 2015

#MimeForMND part 2 

Right, here’s a little update on how the Mime for MND campaign is going. I’ve been overwhelmed by everyone’s support, donations and obviously the videos which have had me in tears laughing. The amount of MND warriors who have tweeted me, emailed me and text me saying “Mark, these videos are brilliant and brought a smile to my face” has been amazing. It’s exactly the reason why I want people to do it. To put a smile on someone’s face who is battling this illness and also the people filming and performing are laughing in equal measure. So do one MND we’re having a laugh!!!

Here’s a few videos upto now, please watch them and you will see how much fun they are to do. Ones a bit disturbing. I’m not sure if it’s Lily Savage or Lilo Lil from the BBC’s old comedy series “Bread” plus the fact that he/she has dedicated it to me makes it even weirder!! 

If you’ve got kids, grandkids, nephews/nieces or even work in a school/nursery get them involved as part of MND Awareness month. There’s a couple of superstars named Evie Skinley and Lily Scott who have done brilliant mimes to frozen. Honestly watch them they’re amazing and I can’t thank them enough. 

I’ve set a just giving page up and you can txt MIME73 to 70070 or visit every bit of money raised goes to the motor neurone disease association. I don’t normally ask for money because I don’t like asking so whatever you can donate, I really appreciate. 

#MimeForMND has given me a massive boost and I know it has other MND Warriors. All I want to do in life is have a laugh. There’s not much smiling and joking in the world of MND but every video I see has me smiling. Job done!! 

Thanks again for you’re constant support im honoured, humbled and priveliged reading you’re messages and I’m pissing myself laughing watching you’re #MimeForMND videos. Keep them coming and more importantly keep smiling.

To be continued… 


  • PS. I’m not on facebook so if you can share this amongst friends on social media or if you have you’re own website. I’d really appreciate it. Remember, it’s good to share, unless you win a tenner with the 30 man lottery syndicate in work… Bonus balls to that! #EnjoyLife 
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. 

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 

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. 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. 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. 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… 


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…

Posted by: mads04 | March 29, 2015

8 days a week 

This is my first blog writing with my eyes! Bare with me. 

I’m gonna try’n let u into the world of living with MND. 

Imagine if you can you wake up on a Monday morning and you can’t move you’re right arm. You try and get out of bed a bit unbalanced and you’re arm just dragging by you’re side. There’s a few men reading this now thinking “Fuck that, how do I sort this morning glory out???” 

On Tuesday morning you wake up with no use of you’re left arm as well. You’re trying to shuffle on you’re bum just to sit up, kicking the sheets of you feeling very frustrated. You try’n walk downstairs feeling very vulnerable thinking if I fall here I’m fucked, you’re arms won’t be able to break you’re fall. You will literally fall flat on you’re face. 

Wednesday morning you wake up with no use of you’re arms and now you can’t move you’re left leg. (What a fuckin bad week this is turning into!) you try and shuffle you’re bum using you’re left leg to try and get out of bed. Now you’re feeling scared and frustrated and when you finally get downstairs you’re limping around like Quasimodo!! I’ve always got the hump with MND!!! 

Thursday morning you wake up and can’t move any part of you’re body. What do you do now? Mnd has taken you’re voice, you can’t communicate. What do you do now? MND has taken away you’re limbs. All you can do is move youre eyes that’s what MND has left you with. 

Friday morning you don’t wake up!!! 

Just take a minute to think what’s happened this week. Sunday night you felt great the next day you had MND and then the inevitable happened. MND is a killer, taking away you’re dignity, independence, pride, voice, movement and finally you’re life. It doesn’t happen over a week but it can happen over a month. 50% of people diagnosed won’t live beyond 2 years. That’s what MND does nothing more nothing less. 

I’ll tell you a terrible story of a man I met with MND. We met at clinical trials  in Walton Neuro centre, he was in a wheelchair and hadn’t had MND that long. He used to tell me he had no carer, lived on his own and his grown up son used to carry him upstairs to go to bed. One night in the summer he was asleep and heard voices in his bedroom, he had left the window open and burglars had got in. He told us he was completely terrified watching them rob him and taunting him because they knew he couldn’t move. I was disgusted when he told us and it just shows how vulnerable you are living with this horrendous fuckin illness. He died last year so at least he’s at peace and doesn’t have to worry about living with MND. 

I’m lucky in that I’m still walking (just) im lucky to be alive if I’m honest. When I was diagnosed in 2010 I couldn’t have dreamt I’d see 2015. Even with my positive mindset it seemed out of reach. I’m now being fed overnight through my peg tube. I’m getting 2000 calories overnight pumped into me hopefully it’ll work because I’ve lost  far to much this year already. 

Life with MND is tough and it never gets any easier. There’s no remission there’s no getting better just the inevitable ending of death. 

It’s took me fuckin ages writing this with my eyes but I hope you’ve enjoyed reading this part of my journey? It’s also having strange side affects on me!! 

Thanks for all you’re support and enjoy life 

To be continued….


Posted by: mads04 | December 9, 2014

Rebel without a cure

I’ve never been one for giving up whether it be on the footy pitch or in life and especially now Mnd is involved. If I believe in something I’ll fight for it and some might say I’m a pain in the arse when it comes to Mnd but I only fight for it because some people with Mnd can’t and I hate seeing people in the same situation as me struggling emotionally, physically mentally and financially. There’s people at the Mnd association who definitely think I’m a pain in the arse but I’m not really arsed about it because everything I’ve said in the past I stand by. My mates always give me loads saying I’m a rebel with the association but I just see it as being honest.

Every year the MND ALS people of the world have a meeting (Symposium) to discuss how the years gone in terms of research etc. Its sad to hear that so many trials have failed. The world has lost to many MND warriors this year and that’s a fact. I tweeted last week during the symposium that it all seems to be aimed at medical professionals and not people living with MND using big words and jargon so the MND research page on Twitter tweeted me a blog saying hope this breaks it down a bit better Mark, sound I thought, then I started reading it and realised that whoever tweets for the research team had overdosed on LSD because they were linking front temporal dementia in MND to Palm trees and pyramids!! What the fuck? I thought, is this spaceman who tweeted me this link sittin in his/her office listening to Lucy in the sky with diamonds? In a psychedelic state of mind with flowers in their hair? Confused? You should be because I fuckin was and I’ve had MND for four years now and not once have I thought about pyramids and palm trees when it comes to this fuckin awful illness.

Theres a saying in life that the people who claim to be highly educated have no common sense, well I’ve found that out more than ever during the last four years. I’ve met people with letters after their name (usually D.I.C.K or T.I.T) who might very well know the square route of a circle!, but haven’t got a fuckin clue when it comes to living in the real world. The only square I know by the way is Albert!!

They also sent me a link to say they revealed a snood to help people living with MND keep their neck muscles warm and it is a great idea, My mate Keith has been using a snood for years and I’ve got one built into my coat which I’ve been using for two years. I might look like an absolute bell-end but I’m not trying to be a fashion icon here!!! it’s taken all the clever people till now to figure it out though!

The ice bucket challenge money will go towards MND research but I just hope the powers that be use a bit of common sense. No matter how much dough you might have you cant buy common sense!!

Keep smiling and stay positive

If you fail you learn if you learn you move forward if you move forward you progress! Not all failures are failures!! Enjoy life.

To be continued….





Posted by: mads04 | October 16, 2014

Dealing with it…

When your diagnosed with MND after going through every test possible to rule everything else out, you’re told to try and take it easy andget as much rest as you can. Yeh right!! Anyone with young kids will tell you rest is a four letter word when your trying to raise a young family!! Rest works for some and with MND being a muscle wasting illness, rest is a fair point. Sometimes by the time your diagnosed it’s taken that long you’ve already started to waste away, so you’re weaker than you were before. This is why we definatley need a quicker diagnosis. It’s just another headache that goes hand in hand with MND. First you have to deal with becoming terminally ill then there’s an introduction to a specialist Dr, MND nurses, Physio, occupational therapist, speech therapist, dietician and a financial expert.

Everyone of these people are there to help you and I’m lucky that I have good people around me, apart from the finance fella who was about as useful as a concrete bouncy castle!!

You’re head is up your arse and that’s putting it kindly. Then you have to deal with telling people, which was the toughest part for me. I’ve always taken things in my stride when something’s bad has happened in my life. I’ve lost me Mum and Dad and I lost one of me best mates, Sway, in a car crash we were both in when we were 18 and it hurt like fuck, I’d grew up with him all me life and it was a terrible time, I just remember the hurt it caused me but more than that the hurt his lovely family were going through, that was the worst part. Especially now I have kids of my own, I couldn’t think of anything worse than losing a child. That incident made me grow up quick, when you’re 18 you’re still a kid basically and every time I’ve had a bad time in my life I always think of Sway and it helps me get through it. RIP Sway always in my thoughts mate!

People react differently to bad situations and I’m not saying I dealt with it better than the next person, fuckin ell an hour after I was diagnosed I was running round the park with my 2 sons with a million and one thoughts racing through my head. If I wouldn’t have dived into raising awareness for this disease I probably wouldn’t be here now but I believe that dealing with MND through keeping myself busy and excercising has helped me cope with having a terminal illness. I work hard when I’m in the swimming pool stretching my body under water an ill be honest there the toughest work outs I’ve ever done but I know they’re doing me good mentally as well as physically. I tried yoga yesterday and today my legs feel stronger than they have for a long time. I wasn’t able to do all the poses but I did what I could and definitely feel better for it. It was hot yoga which is even better for someone with MND. The cold never bothered me before MND but now it scares the shit out of me because the less muscle you have the less natural insulation you have, plus you have to wrap up warm in the winter for fear of a chest infection which for someone with MND is a certain killer.

Dealing with MND is more than a 9-5 job, it’s every minute every hour of every fuckin day. I even dream sometimes that I haven’t got MND then wake up with an itchy nose and realise I can’t fuckin scratch it! People often tell me how inspiring and strong I am. I always tell them the same thing “I’m only as strong as the people around me and I’m just an ordinary lad try’n to survive an extraordinary illness.

Thanks for your constant support I really do appreciate it. Shit happens in life, it’s how we deal with it that defines us.

Keep smiling and enjoy life, we only get one shot at it.

To be continued….


Posted by: mads04 | October 8, 2014

A little thanks goes a long way….

My mum brought me up to be respectful and always use your manners. Common courtesy is something we should all use in life, it costs nothing the same way a simple smile costs nothing. A smile or hello can make someone’s day or at least give them a little boost.

I went to New York last week and whilst sat in Starbucks (Gegging free wifi) Jayne went to the toilets or the rest rooms man!! A man was sat next to me and he had his head in his hands rubbing his face, so I said to him “You ok mate?” “Yes brother” he replied.”Long fucking day man, working since 5 am” it was now 5.30pm. “Just came in for a coffee for a boost before home.” “Don’t work too hard my mate” I said “life’s for enjoying”. He looked at my walking stick and asked what the problem was? “You heard of the ice bucket challenge?” I asked him. “Of course man, ALS” he said. (Thanks again Peter Frates!!) With that the penny dropped “Shit man, I’m complaining about working and you’re battling ALS brother” he continued. “Don’t apologise my mate, shit happens, I’m 4 years in and live for today” I said. “Respect brother” he told me. ” Respect to you as well my mate, it’s a tough world and we do what we have to do to survive.” With that Jayne came back and as we were leaving he gave me a wink and said “Stay strong my brother” with a smile. “Always my mate, always.”

I walked away with a smile as wide as the Brooklyn bridge, a simple encounter but it made myself and my new mate both feel good about our own worries. I’ll never see that man again but I like to think our brief encounter was enough to make us feel good about ourselves and kept our faith in humanity. It’s not a hard thing to do I’ve always done things like that but even more so now since diagnosis. Everyone has their own troubles big or small so if you see someone troubled or worried a simple “Everything ok mate” could go a long way.

This is only a short blog but I just thought I’d share this moment with you to emphasise how life should work Instead of trying to fight with each other we should try and help each other. It’s not fuckin rocket science is it???

Keep smiling…..

To be continued


PS if you get the chance to go to New York take it, the place is unbelievable and when we told people we were from Liverpool they were all over us like a rash!! Amazing that four lads from Liverpool shook the world and 50 years on America is still in love with them!

There are places I remember…





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