Posted by: mads04 | September 16, 2014

Making a comeback…

Have you ever thought about reincarnation ?? I often think now what would I like to come back as? It’s a great white shark or a golden eagle for me basically because their both top of the food chain and nothing fucks with them, but knowing my luck if there is such a thing as reincarnation, I’ll come back as Rodney!!

Sat alone with just my thoughts I often think some crazy shit, like if I came back as a shark would I have to start disliking dolphins because I love dolphins but I’ve read that they can have it with great whites so I’d have to be on my toes (or fins) and if I was an eagle I’d definitely fly over David Cameron’s house and shit all over it!! You’re probably thinking now “Fuckin ell Mark what drugs are you on?” Not enough if I’m honest with you!!
I’m bored shitless, I can’t work anymore I can’t do what I want anymore. I had plans to do things last week, I wanted to try walking football so I arranged to start at a local sports centre and I was meant to go to an after party for the one night in Istanbul premiere in Liverpool but Mnd decided to fuck all that up for me by making me feel like shit and giving me as much energy as a fuckin dead battery!! I was meant to go on Anfield FM radio station and speak about Liverpool FC and Sundays final part of a 100 miles with MND but my voice is fucked so I can’t go on unless I want to sound like Oliver reed!! Talk about taking things day by day with MND it’s minute by minute!

On Sunday I completed 100 miles with MND by finishing the English half marathon in 3 hours 36 minutes. It’s been the hardest thing I’ve ever done and I’m now sitting here like the tin man (Fuck that yellow brick road off.) massive thank you to me mates who done it with me and everyone who has supported me on this long and emotional journey. People tell me how inspirational I’ve been but honestly there’s far more MND warriors out there who deserve that title more than me and it was with them in mind that I managed to achieve what I did.

My marathon days are over now. 100 miles with MND has never been done before and if it has I’d love to shake hands with that person because I know hard it is to do it. I need time now to rest and concentrate on my family without worrying about what we can do next.

Thank you to everyone for your constant support it really has made a difference to me and inspired me to keep fighting this global killer.

I’m sure by the time I write my next blog I’ll have thought of something else to do to raise awareness for MND.

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Posted by: mads04 | September 3, 2014

Pulling the plug

Assisted suicide has been in the news lately and it’s something that goes hand in hand with MND/ALS, fuck it I’m calling it Mnd and Mnd alone I’m from England it’s fuckin MND!!
As it’s against the law to assist in someone’s suicide in the UK, you have to fly to Switzerland to do it. Now I don’t mind a little city break in Europe and I wouldn’t mind a little trip to Switzerland but imagine the panic in me mates when I told them I’m off to Zurich for the weekend!!

In my eyes it should be the individual who decides their own fate and if they’ve got a loved one willing to pull the plug then that should be there decision and their decision alone.

If your against assisted suicide, then please let me try and explain the Mnd patients view; You’ve lived a healthy life, looked after yourself, have young kids who like any parent you would do anything to protect them. Mnd comes along and slowly but surely it takes away the things you take for granted. Frustration is the key word here, frustrated because you can’t dress yourself, you can’t wash yourself, you definitely can’t shave yourself unless you want a scene out of pyscho in the bathroom!!. You can’t even wipe your own arse!! Probably a bit too much info but fuck it I’m trying to be honest!!
You get an itch, you can’t scratch yourself, it’s not all bad when you’ve got itchy plums though!! Frustration at not being able to eat what you want, trust me as much as I like a milkshake they get a bit boring after a while! Frustration at watching your family upset because you can’t do the things you did before MND. Frustration at feeling like a failure. Frustration at feeling like a burden to people. Sometimes it’s hard not to feel like you’ve outlived your welcome. A feeling that people are bored of it all now. As much as I always try and make people feel at ease with me, I hate the fact that some people still don’t know how to act around me. That’s just human nature, I understand that but it’s still frustrating. Frustration at seeing your kids faces when your choking, that’s the worst part, my kids being involved with Mnd.

I also see so called “celebrities” saying when they reach a certain age they’d like to do an assisted suicide because they don’t want to become a burden, I’d gladly assist some so called “celebrities” now and pull the plug on some of these reality show wankers who are constantly worried about what they look like, how much money they’ve got and what the public think about them. Like I always say if I was a millionaire I’d still have Mnd, some peoples goal in life is to make as much money as they can and they will go to great lengths to achieve this. But.no matter how much money you’ve got it can’t buy you a cure for Mnd.

If a dog is old or not well we put the animal down because it’s cruel to let them carry on, I understand the reasoning of assisted suicide being illegal in the UK, but surely the law needs looking at again to stop people suffering in later stages of a terminal illness.

Mnd in the later stages is basically locked in syndrome, the only thing you can move is your eyes, the scariest part of it is it’s out of your control. There’s days where you think “Yeh I’ve got you today.I’m in control” then bang you cramp up or have a fall. This to me is why it should be the individuals choice, it would be the only time that the person with Mnd is in control of the situation. In control of their own future because as soon as your diagnosed Mnd controls you.

Right I’m off, just seen a lovely hotel in Zurich, see ya later……

Thanks for all your support and keep smiling #EnjoyLife

To be continued…

Mark

http://dignityindying.org.uk

http://youtu.be/SJUhlRoBL8M

Posted by: mads04 | August 29, 2014

“You ain’t got nothin to lose”

People run for charity every year and whatever charity you choose I salute you, if your healthy enough to do one you really are making a difference to that charity. The ice bucket challenge is a lot easier unless your a fuckin scruff and your terrified of water!! The IBC has now raised around $100 million in America and over £4.5 million in the UK. I’ve read there will be $1.5 million to be being used to start a new clinical trial in the fight against ALS/MND in 2015 so straightaway the money is going to good use. The people who have had a moan about the IBC should know that for the people who they claim to be attention seekers haven’t just threw a bucket of ice of their head but actually donated. (Can’t stand miserable people!)

I don’t think anyone could’ve imagined how successful the IBC has been not even Peter Frates who’s idea it was. I done a talk 18 months ago at the MND Association about living with MND and how I was trying to raise awareness. I remember stating how important it was to get a younger generation involved and try and educate them about MND via sports and social media, I also remember half the room looking at me like I was talking shite. I’ve even been told by an mnd volunteer that another volunteer for the association called twitter “the devil”. Fuckin ell I forgot we were still burning witches at the stake!! MND has largely been seen as an old persons disease so I understood why half of them weren’t convinced by my talk, but I’ve seen and met enough people under 30 with MND to know that it can affect anyone at any age. The ice bucket challenge is the best thing that’s happened to ALS/MND campaigns and I’m just glad I’m alive to see it, but the hard work starts now it’s vital that we keep the momentum and don’t just pat ourselves on the back and say well done! I can’t even pat myself on the front never mind me fuckin back!!

The hard work starts now, we can’t live under the “We’re only a small charity” now, the IBC has put Mnd on the map.
The MNDA need to grab the initiative and keep moving forward, not to far forward were they forget the people who are living with it now. I hope the money gets used wisely, as much as a cure is vital so are the people who are living with this horrible illness. Quality of life is important, I’ve seen ridiculous things when it comes to funding for helping people with MND. They’ve never had this type of funding before, I hope they use it accordingly.

100 miles with MND/ALS

Let me try and explain what it feels like to do 100 miles with MND. Try walking round for 6 hours with a 20 kilo weight in each hand, feel how much it pulls your shoulders, by the finish line it’s like carrying two bags of cement round for 26 miles. Try running 800 meters full blast then think how hard 26 miles out of breath is like! My lung capacity is 44% at the minute to give you an idea. Try walking with 10 kilo weights on your legs, shuffling your feet for 6 hours and instead of taking water on board via your mouth imagine having to stop every hour to have a syringe filled with water pumped into your stomach in your peg tube to try and keep you hydrated. Imagine your worst muscle cramp then imagine it in your neck, it stops you in your tracks for a minute at least every 2 miles feeling like your windpipe is closing over, you have to stand completely still to let the cramp pass. Now you know what I do to help raise funds and awareness for MND so what exactly was your excuse again???

I found out this morning of a fellow MND warrior losing her battle with the illness, no one wins in the battle with MND that’s the reality of it. RIP Colette a true #MNDWarrior. thoughts are with you Matt x

Bob Dylan wrote in a very famous song “When you ain’t got nothin’ you got nothin to lose” that’s the way I’ve felt for the last 4 years living with Mnd.

Thanks for all your support

Mark

Posted by: mads04 | August 21, 2014

The ALS/MND ice bucket challenge

If you follow me on twitter you will have noticed I often put #Global killer as a hashtag when talking about Mnd/ALS. I put that because over the last few days you might have noticed the ALS/MND Ice bucket challenge which is raising funds and awareness around the world. As someone living with this illness and also a massive campaigner I’m absolutely made up because since I was diagnosed I’ve jumped out of planes, written and performed songs, nearly completed 100 miles doing several marathons, helped organise football tournaments, released albums, completed two 30 mile bike rides, appeared on multiple TV and radio stations, fronted an MND and football campaign an all I had to do was throw a fuckin bucket of ice over my head!!! Fuckin sound!!

The ALS/MND ice bucket challenge has become a global phenomenon and was started by an ALS/MND warrior called Peter Frates In America. It has raised over $41 million and it’s increasing by the minute. Just to try and compare it the whole of last year the ALS Association received around $1.3 million, they’ve made $41 million in the last month. This to me personally makes me want to cry with tears of joy. Since the day I was diagnosed all I’ve ever wanted to achieve was to raise awareness for MND and hope that one day a cure will be found. Personally I’m not arsed about the money because as it’s proving raise the awareness the money will follow.

Living with Mnd is a lot easier than trying to raise awareness, that might sound a bit strange but honestly I’ve been banging mine and other heads against a brick wall for nearly 4 years now, there’s people who’ve been doing it for longer than me. I’ve put my body on the line, my health at risk and other peoples ears at risk with my singing!! I’ve tweeted like mad. I’ve had arguments and got frustrated by the way we all raise awareness and I’ve probably pissed some people off but all I’ve ever wanted is for this horrific disease recognised. Finally, thanks to my fellow ALS/MND warrior in America the Mnd/ALS community around the world are getting some well deserved coverage.

I haven’t always seen eye to eye with the MND Association but I’m glad they are getting recognised for the work they do. There’s been talk in the media about other charities hijacking the ice bucket challenge, mainly the Macmillan cancer charity, listen charities are ran like business and like all business it’s competitive. So we have to expect that if something works for 1 business it might just work for another. The Macmillan charity have made around £250,000 off the ice bucket challenge were as MNDA have made about £50,000. Cancer has a much bigger audience because of the amount of people it affects and I’m made up for them. I seen what cancer did to my lovely mum and I know what great work they do.
There wouldn’t have been any confusion if MND/ALS had one name, something myself and others have been going on about since day 1. Social media has exploded because of the IBC and I’d like to thank everyone who’s done it, which by the looks of it is the whole fuckin planet!!

I’ve watched this illness kill people I’ve met and class as friends, all the time watching them deteriorate knowing that this is my future. Imagine knowing that you will end up in a wheelchair unable to move, talk, hug your kids and finally die in that position. That’s the reality of MND /ALS. Sometimes being positive all the time doesn’t work because it’s tough to get a message across with a smile it’s easy when your crying but it’s even easier with a bucket of ice!!

I’d like to thank Brendan Rodgers for mentioning me in his IBC, that was a really nice touch.

Remember, to donate to the MNDA text iced55 ( £ ) to 70070

Watching all the videos has brought a smile to every Mnd/ALS warrior worldwide and that’s worth more than any money donated…. Trust me.

Keep smiling and remember to donate after your IBC it’s not just about pointy nipples and shrunken nuts..

To be continued

Mark

https://www.youtube.com/watch?v=5CNtfLuXi0A

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Posted by: mads04 | August 15, 2014

The tears and laughter of MND/ALS

Having a terminal illness with young children is what hurts me more than anything MND can throw at me. I can take being told I’m going to die but I can’t handle telling my kids which is why we’ve never told them the full extent of MND. My little girl is 5 and she was 1 when I was diagnosed so she doesn’t know life without MND. I wish that wasn’t the case and it’s something that breaks my heart, my kids will look back in the future with MND firmly in their minds. I fuckin hate that thought but unfortunately that’s the way it is. My daughter takes it in her stride though, children have amazing abilities to adapt and she’s always willing to help me flushing my peg tube and telling me “It’ll get better your belly Dad won’t it?” I was taking her to bed the other night and she asks me “Dad, why can’t you talk properly?” “I’m tired tonight babes” I replied. “Well you seem to be tired every night dad” nothing like a 5 year old to put you in you’re place.

Were lucky in that the kids school’s have been brilliant with us from the minute we explained our situation to them. They’ve never questioned us when we’ve been away during term time, always seeing the bigger picture which is important to us as a family. The last thing you need is any extra worries or stress because trust me that comes from other people who don’t see the bigger picture.

I had a letter a couple of years ago from the department of works and pensions, obviously not being able to work our lovely government grant me a massive £50 a week to live on (Wow, bet the kids can’t wait for Christmas!!) anyway this letter said I had to go to a back to work interview which involved wether I could go back to work or not! Seriously what fuckin part of terminal illness don’t they get?? As I was sitting in the waiting room looking around thinking what the fuck am I doing here? A woman came in called my name and explained there’d been a mistake and I didn’t have to go through with the interview now! Bearing in mind Jayne had to take a day off work to go with me and they’d just wasted a day of my precious time because some gobshite couldn’t be arsed doing their job properly! MND Problems at its best there!!

Raising awareness for MND/ALS/LouGehrigs disease (Seriously, just give it one name!) is something I have worked tirelessly on these past few years wether it be through football, Boxing, Mixed martial arts, jumping out of planes, running or music but it seems I might have to throw a bucket of ice over my head to join a growing group of people who are doing this as part of the ALS ice bucket challenge which kicked off in America by a man called Peter Frates. It’s taken America by storm and quadrupled donations over there which is fantastic and hopefully brings a cure nearer. I’d like to thank Peter who’s a true ALS/MND Warrior and everyone else who got involved, it really has made a difference. Two of my friends who are relentless in their fundraising and awareness for Mnd have set the same challenge up in the UK.

http://www.justgiving.com/icebucket4mnd

https://www.youtube.com/channel/UCv4r6z5MJ_R0Je9Vzd_YxpA/videos

Here’s a couple of links if you want to get involved. Well done Paula and Richard true campaigners x

A major part of my awareness campaign ends next month with a 100 miles with MND. This has caused arguments, tears, sadness and laughter over the last few years but I’ve loved every minute of it. Arguments with my family (mainly Jayne) about pushing myself when they felt I was doing more damage than good to my body when doing marathons, Tears from sharing moments I never dreamt possible before MND, especially crossing the finish line with Keith and also meeting a true MND Warrior Eric Rivers after the first London marathon and his very special wife Davina and family. Sadness from seeing people with MND who have sadly died during this time (far to many) and laughter from the antics and fun I’ve had whilst putting my body on the line for the cause!! Only last night Willy and Peter were recalling their horrific memories from the Liverpool marathon about being in agony for days after, whilst I was ok. That will always bring a smile to my face!!

There will be about 25 of us who will be doing the English half marathon next month and I’d be grateful to anyone who could supply us with MNDA T shirts. Mostly large because there’s a few salad dodgers in our firm!!

Thanks again for all your support and don’t stop believing!! A cure is out there.

Keep smiling

To be continued….

Mark #100MilesWithMND

P.S. You mightn’t have many triumphs in life, make the most of them….

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Posted by: mads04 | August 11, 2014

100 miles with MND

On September the 21st I’m going to attempt the English half marathon and with the 13 miles that it consists of it will take my official mileage with MND to 100. I never intended this to be my goal but when I fucked up this years London marathon I dotted the miles up I’d accumulated and figured I weren’t that far off a hundred and not being one to shy away from a challenge thought fuck it I’ll have a pop at this!

I’ve written a few a funny tales of the runs we’ve done but probably the best ones are from the very first marathon we attempted in Liverpool. About 30 of us done it that day, some doing the 10k which was incorporated into the marathon and the rest doing the full 26 miles. To start with out of the 30 or so people doing it with us only around 5 had ever done a marathon so the rest were in very deep water, I’m sure when they were asked to do it they thought it was a good idea and for a good cause but come the end of the day I was getting called every name under the sun!! We had my mates dads Peter and Phil Skinley who are brothers and both over 60 and thought they could walk it, if you remember the old men out the muppets show sat in the side box of the theatre always complaining then that’s what these two are, they only have to look in the mirror to start an argument. (Who the fuck are you lookin at?) anyway after completing 13 miles, they came out of the Mersey tunnel at the Liverpool end in about 4 hours they’d had enough and walked to their local pub cursing my name!!
I remember seeing them at around 9 miles and them shouting over to me “You can fuck off you” obviously trying to keep my spirits up!!! Then there was Paddy and Gerard who had never done a marathon before. Gerard was a fit lad, he was a boxing coach and everything he done fitness wise was short bursts of energy stuff not long distance fitness which is what you need for 26 miles. I seen him over the road at around 17 miles I shouted over “Gerard” and waved at him he gave me the finger and shouted “You can fuck off you” another great morale booster for me!! Poor Paddy had trained hard and he done brilliantly but when he was crossing the finish line his little lad James ran up to him wanting to share this moment with his dad only for Paddy to knock him out the way and vomit everywhere.
I ran my race accompanied with Willy and his girl Paula, Peter and his brother Michael and Carlos. Now Carlos is a great lad and I love him to bits, he’s my mates lad but I treat him like my own, him and his girl have just had a baby boy and to my surprise they called him Maddox which is a nice touch. Carlos isn’t the sharpest tool in the box though and decided the night before the marathon to go on a bender so he turned up looking like an extra from the walking dead! So as you can imagine doing 26 miles after a night out in Liverpool wasn’t one of his better ideas but fair play to him he could easily have not turned up and took a lifetime of abuse off me!! After a few miles we started walking and when I looked at Carlos he was the colour of boiled shite and was walking like he was actually having a boiled shite so with me being the sympathetic person that I am I told him “It’s your own fuckin fault, stop moaning”.

Peter and Michael were going along ok until Michael’s knee started blowing up around 10 miles and had to drop out when we seen an ambulance, I’ve known Michael all his life and he was gutted but he’s doing this half marathon with us so I’ll be able to remind him how much of a wimp he was that day!! Peter who can’t even run a bath never mind a marathon was surprisingly doing ok but Paula was feeling like shit and around 17 miles she had to stop. I felt really sorry for her because she’d never done anything like this so getting as far as she did was a tremendous effort, Willy stayed with her and told us he’d catch us up but we were on Upper Parliament street which is a massive up hill road so we thought that was the end of his race. About a mile later we were walking an turned round and here was Willy with his little chicken legs catching us up. Willy is about 8 stone wet through and is built like an ironing board so to see him behind us was a massive shock.

Tony who had ran the race and finished earlier came back to about 24 miles to finish with us and I’ll never forget the look of surprise on his face when he seen us because I was in the front of our group carrying the rucksack on my back which I decided to carry because the other three could just about carry themselves and Willy, Peter and Carlos were lagging behind me looking and probably feeling like they’d been ran over by a bus. I was on a mission to finish to be honest and no doubt the other three were thinking “You can fuck off you”

Now I’ve written about Keith Ten Pow before, a legend who’s been living with MND for 20 years so to see him in his wheelchair near the end was a massive boost to all of us, he wanted to cross the finish line with us which was emotional to say the least. His smiling face was just the thing we needed to get us to the end. He even beat me to the finish line and got a medal at the end (for doing less than a mile in his chair! Cheeky bastard!! )

At the end there was a huge crowd of family and friends which was brilliant and the day as a whole was a fantastic experience and definitely gave me the strength and focus to do more. Just a quick point Carlos ended up in hospital that night on a drip and never attempted a marathon again (Fuckin wimp!!)

I’d had MND nearly 2 years when we done the Liverpool marathon and I can honestly say it was the toughest thing I’ve ever done but also the most rewarding. To be told I had MND 22 months before was a huge bombshell to some one as active as me so to cross that finish line with people who I love and love me back in equal measure was and still is a memory I’ll never forget.

It’s been an amazing experience doing the 100 miles, it’s not done yet but nothing will stop me now and so to MND, this terminal illness that not just changed my life but also the lives of the people around me I say “You can fuck off you”

Keep smiling and remember the more you believe the more you can do

To be continued…..

Mark #100MilesWithMND

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Posted by: mads04 | July 8, 2014

Abuse of power & Positive thinking

I watched a documentary on the life of Lance Armstrong the other day and as wrong as he was in doping his way to victory in the Tour de France races you have to admire his courage in beating cancer and the fantastic job he done in raising awareness for testicular cancer, what he achieved with Live-strong campaign was and still is an unbelievable success story in the fight against cancer.
I remember watching him win his races after coming back from beating cancer and thinking what an incredible and inspiring human being. The man was a walking or cycling miracle, but he obviously had a dark side. After watching the film it was pretty clear He was and still is an arrogant prick, not only did he cheat his way to success he abused his role as a cancer survivor to deflect accusations of doping to win.
A Sunday Times newspaper reporter asked him about doping in a press conference and he completely turned it round on him by playing the victim and using cancer to completely destroy the man and make him feel as if he was bang out of order in front of his colleagues. That to me Is a sign of a Frankie Howard (coward) he embarrassed himself and let down the cancer world.
Believe it or not abuse of power in the MND world is not uncommon. I’ve seen patients use MND to gain a personal advantage , you don’t have to use MND or cancer as an excuse to get by, if your honest about the illness people will support you anyway, I’d never try and use my illness to gain an advantage although I do love takin the piss when I’m with the lads or in the house, if I want something I might start saying “I’ve fuckin got MND me and I’m having to get me own drink, I’m reporting you to the social!” but there’s definitely some people who when diagnosed feel the world owes them a favour and become bitter about it. I can totally understand that and most people ask “Why me?” But your asking a question that has no answer so there’s no point using up your vital energy searching for one.

The worst abuse of power I’ve witnessed is when I’ve been to America. Disneyland this year was the first year I applied for a disability pass which means you don’t have to stand in line for their rides, I could have got a mobility scooter but I’d rather use my walking stick to at least give me that feeling that I’m exercising. I’m not messing but some people over there proper take the piss, there’s some proper fat bastards who have nothing wrong with them apart from they can’t stop eating, all driving round in mobility scooters because they can’t be arsed walking and before all the do gooders start having a pop saying “they’ve got problems” I sympathise with those who do but some don’t, they just love a fuckin scoff and are bone idle.
How come when we warn against lung cancer we tell people to stop smoking or liver disease we say cut down on alcohol and that’s all ok but if we tell someone to stop eating as much because it’s bad for their health were out of order and wrong? Just a thought.

My little girl wanted to go on a Dumbo ride in which 2 people get in and the ride goes round and round and you have a little stick that you can go up and down, anyway I’m in the disabled line when this fuckin salad dodger is in front of us on a scooter, he’s about 35, 25 stone and obviously had a season ticket for McDonalds!! He’s got a T shirt on claiming “I’m not Lazy I just can’t be bothered doing anything” I can tell straightaway there’s nothing wrong with him, maybe it’s because I’m a scouser and we can smell a bullshitter a mile off. Anyway he gets off the scooter waddles over to the ride, sits in it on his own, he can’t even go on with his kid because he just about fits in the 2 seater ride by himself, so I said to Jayne “Poor fucking Dumbos ears will be flapping like mad getting this fella off the ground”

The importance of positivity…..

Is your glass half empty or half full?? Do you always think the worst or think positively? Whatever you are it will have a strong input into how you live your life. If you keep telling yourself your not well then there’s a good chance you will become ill. I’m a strong believer in that, that might sound a bit strange coming from me, I was never sick up until I was diagnosed, I’d had one operation in my entire life and that was when I was 2 with a hernia, then after diagnosis I had to get a peg tube fitted to help me eat properly and keep my weight up. There the only times I’ve ever had to stay in hospital. I always looked after myself, kept my self fit and never once thought something like this could happen to me. In life there’s a saying that goes fight or flight which basically means stay and fight or as the Monty Python team say in The Holy Grail “Run away!!!” Well MND is one thing in life you can’t run away from, especially in a fuckin wheelchair!
Being positive with MND is my key to living with it I’ve seen first hand what a negative attitude does with MND but I think having sense of humour helps, it certainly has with me. I’m always taking the piss out meself because sometimes you just need to laugh at the situation. When I’m tired my speech slurs and I’m hard to understand so when this happens I start recalling a famous quote from one of me favourite films Rocky “Yo Adrian” or If you’ve seen The Wolf of Wall Street movie you will have seen were they’re all off their tits on drink, drugs and mainly Qualludes giving them slurred speech, well that’s me, so I start saying “Steve Maaaaaaaaaaaadddddden” if you’ve seen the film you’ll get it!! If not watch the clip below.

Having a positive outlook to me is vital and helps me keep with the philosophy of live for today.

I wonder if the MND Association will post this blog?? Here’s hoping!!!

Keep smiling and enjoy life

Mark

Posted by: mads04 | June 28, 2014

The Final Whistle

If you look the word terminal up in the dictionary you will get the end or fatal and mostly terminal cancer or in my language fucked!! Cancer is a word they associate with terminal but what about all the other terminal illness’ that aren’t associated with cancer? Why do they get overlooked? In my world we don’t have treatment were as with most cancers you do, wether it be an operation or chemotherapy but at least there’s something to give you some sort of hope. With MND there’s Riluzole a tablet you can take that might give you an extra 3 months to live!! Fuckin ell what a bonus I hear you say!!

Trying to raise awareness by being positive with MND doesn’t sit right with the mnd association, In my opinion they want you to be in a wheelchair or being spoon fed by your loved one with your family looking on helpless, because more people will feel sorry for someone sitting in a wheelchair than preparing for a marathon or recording an album. Sad but true that’s the way of the world, when they asked me would I pose for a photograph with Jayne while she fed me I asked why? Jayne hasn’t had to do that yet it will happen a fact we are both aware of but this was 12 months ago when my piano playing days weren’t over!! I’ve always felt the MND Association never fully trusted me, I think they were worried I may say something that might look bad on them, whenever I’ve done radio or TV work they’ve made sure someone was there or tried to tell me what to say. Listen I’m the one living with MND I don’t need telling what to say about it! Even with the football awareness campaign poster it said “I lived for football but now I’m dying” I understand it’s an impact statement to get it noticed and it obviously worked because it’s the most successful campaign the association have ever had but I wasn’t entirely happy with that statement and the campaign only came about after a blog I wrote saying I felt underused by them because I was willing to talk and give my time to help raise awareness for mnd. Listen the MND association do some great work but I don’t think they were quite ready for me, someone quite young with MND with an opinion who’s not afraid to tell it how it’s is. I also think they missed a trick not promoting the football posters in the tube stations in London during the World Cup, it just makes sense to me that whilst people are going to or coming home from work looking forward to the footy on the telly if they see something with football on it they will take notice! I’m also disappointed with the English FA for not getting involved with the campaign considering ex England player and former manager Don Revie died from MND. The Italian FA have backed MND in their country because they have had a couple of players die with the illness but I suppose the English FA don’t see an ex manager important enough to get involved!!

For some reason the MND association refuses to promote my blogs, they always promote other people who are living with MND or just involved but mine must be that shit they just won’t encourage them!! They did the same with the albums we’ve made they’ll promote other music designed to help the mnda but again not ours. Do they realise how difficult it is to record an album with MND because let me tell you it’s fuckin hard work and they were both done to raise money for the cause.
I’ve never made a penny out of anything myself or my friends have done but the Mnda have made thousands out of what we’ve done and that’s the truth. I’ve only ever done what I thought was best for people with mnd, I’ll explain an example to you, my sisters work donated £10,000 to MND merseyside, an unbelievable amount and I asked the branch if we could split the money between people living with MND on merseyside (Myself not included ) I was told yes so I suggested £5 grand to a man called Keith who has been living with MND for 20 years and deserves millions never mind grands for the work he’s done whilst battling with MND and the rest split between another 5 people with MND . Keith has been going to Liverpool town centre for over 15 years in all weathers collecting money and raising awareness for MND, the man is my hero and the most positive person I know and I thought along with my sisters work he fully deserved something positive in his life, as did the other people. After being given the ok by the branch to distribute it this way the association got involved and blocked it for their own rules and regulations, one being we can’t show preference in were the money goes, fair enough but no one would’ve begrudged Keith that money in the MND world. Keith should be at the fore front of everything the association does regarding living with MND, his smile lights up a room and his courage is something we can only dream of. My sister rang the association up to see what the problem was regarding the money and after being told the reasons she was also told she could have the money back if she wasn’t happy with it! Serious??? To say that was a kick in the teeth is a massive understatement and when she told me this I was fuckin blazing as you can imagine? But one thing about having mnd is that it’s not wise to get worked up because you get shortage of breath and start shaking like a shitting dog!!

When I first started campaigning for MND in hindsight I should’ve set my own foundation up then everything raised could’ve went to the people with MND without any problems but I just thought I was doing the right thing at the time. Another thing what pisses me off about charities is that they will always arse lick so called important people who they think they might be able to help them, an example being an MP in Liverpool called Stephen Twigg who’s supposed to be a patron for the Merseyside branch but to my knowledge has done fuck all for people living with MND in my area although he did actually attend a ball the branch held, it cost me my family and friends £30 each for our table which I haven’t got an issue with but him and his guest never had to pay a penny! Have a think about that?? that year I’d ran a marathon, jumped out of a plane, recorded 2 albums and fronted the biggest campaign the association ever had all whilst living with MND but still payed the £30 required for a table to attend and this clown got a freebie!!

This blog might sound like I’m against what the association are doing, far from it like i said earlier they have some good people working for them and even better volunteers and without them life for people with MND would be a lot harder. The volunteers in my opinion will always more passionate about MND because they have been touched personally by the illness.

I’ve worked it out officially I’ve completed 86 miles with MND in marathons or 10k runs I’m hoping to do 100 miles with MND it’s going to be a big ask because my legs are getting weaker but god loves a trier so we’ll see what happens, I’ve put a lot into raising awareness for MND over the last few years and I’ve achieved more with MND than most people have achieved in their lifetime. I’ve always appreciated my family and friends support and without them I couldn’t have done all the things i have with MND. Please keep supporting the cause because like I’ve said before a cure will not be found in my lifetime but it is out there and it needs to be found to prevent future generations going through what myself and so many other MND warriors go through every day now.

The final whistle has blown but I’ve took MND into extra time, this a match I still feel I can win, MND is a 90/10 tackle in its favour and anyone who played against me or seen me play will know I fuckin loved a tackle so prepare for a two footer MND it’s coming!!!

Stay positive and enjoy today because you never know what tomorrow brings .

Thanks and keep smiling
Mark

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Posted by: mads04 | April 20, 2014

Nothing’s impossible!

This time last week I was recovering from attempting the London marathon. I had to stop at 16 miles, the heat was a big factor for me and although my mate Tony tried his best to keep me going I knew from around 10 miles this was going to be a battle I might not win. The night before in our hotel I knew it was gonna be tough, my peg tube site was bleeding which is a sign of infection and without antibiotics I knew I’d have poison running through my body while I attempted 26.2 miles. I’m not making excuses, people who know me know that’s not my style, but it was obviously a big factor!! Tony was brilliant with me right the way through, we’ve been mates for a very long time so he knows what makes me tick and every now and then he’d say “You ok mate?” “Yeh, sound mate” I’d reply, but after the half way stage when Sonic the Hedgehog and a fella dressed as an usher giving away flying saucer sweets went past us, I think Tony knew I was struggling!! We managed to get to a first aid station and when Tony explained to them I had MND, they were looking at each other like what the fucks that??
But they were brilliant with us making sure I was ok and I was thankful for their support. To say I was gutted would be a massive understatement, gutted and angry that my body gave up on me no matter what my mind told it to do, once your body caves in there’s not much you can do about it! ( Fuck off MND) we raised over £3.500 for mnd but more importantly to me we raised much needed awareness.

I was invited into Liverpool FC’s training ground this week after Brendan Rodgers read the piece I wrote in the LFC match-day programme against Tottenham Hotspur. The staff and the team were absolutely brilliant with us and I don’t know who was more excited me or the kids!! All the team and back room staff signed the MND charter which is a petition to help people living with MND have a better quality of life. Seriously why does there have to be a petition for something like this?? For Brendan Rodgers, at a time when the team are having to deal with the pressure of winning a league to give up his time and welcome us the way they did, I think shows the true measure of the man and I can’t thank them enough for supporting us in our football campaign. We need thousands of more signatures if it’s to get seen in parliament, it will make a massive difference for people living with this terrible disease.
http://www.mndassociation.org/get-involved/campaigning-influencing/Charter+Three+Minutes#.UzAOKdJF200
Please sign this link and share it, it only takes a couple of minutes of your time but can make such a difference.

Well done to Richard and Andrew who joined me in doing the London marathon whilst living with MND, there warrior spirit is an inspiration to us all.
I might have failed in becoming the first man to complete the London marathon twice with MND, but there’s always next year!!!!

Stay positive and more importantly keep smiling.

To be continued….

Mark

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Posted by: mads04 | March 13, 2014

Run for your life

I went to see my professor the other week for a check up to see how I was gettin on, everything is ok, my lung capacity is down a bit but apart from that, nothing major. I asked about donating my brain to research when I finally kak it. I had heard of a doctor from Boston, USA who is researching ex sports players brains to see if playing contact sports has anything to do with neurological conditions. My prof started laughing and told me by the time my brain got to Boston it wouldn’t be worth a carrot to them and plus she wants first dibs on it! I told her no problem she can have it but I’m a bit gutted because I’ve always wanted to go to Boston!!

Sundays the day to attempt another marathon with MND. I can’t run anymore so I’m not sure how long it will take me this time but even if I come in last place it’ll be worth it just to raise more MND awareness, my lungs are a lot worse than last year so unless your the fuckin six million dollar man your gonna struggle with my lung capacity! I remember when I done the Liverpool marathon in 2012 we started off by trying to run then walk for a bit. It might sound strange but that marathon was harder than London 6 months later. I finished the race that day like the tin man and when I woke up the next morning Jayne was doing the ironing on me I was that stiff!! The Liverpool marathon was a great atmosphere and everyone was giving each other high fives, I seen a woman who I recognised from the kids school on the opposite side of the road running and as I went to give her a high five, she was laughing and said “run will ya” she obviously didn’t know about my illness but at the same time I thought why would you say that to someone doing a marathon? Every single person doing it has their own reasons for doing a marathon, wether it be for themselves or for a cause close to their heart and to me it makes no odds wether you run,walk,crawl or get fuckin carried over the finish line, as long as your having a go what difference does it make? Needless to say the woman gets blanked now when I see her for acting like a complete tit!!! Oh and a warning to anyone who sees me Sunday, don’t shout “run will ya”!!! Trust me if I could, I would (Blame MND)

A huge thank you to everyone who’s sponsored us so far and helping raise awareness for Mnd.

Stay positive and more importantly stay smiling!!

http://www.justgiving.com/Mark-Maddox1?utm_source=emailvision&utm_medium=email&utm_campaign=fundraisingpage-donation-alert-email

To be continued

Mark

For the 96 justice is coming

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