Posted by: mads04 | April 10, 2016

Nobody said it was easy…

🎼 Nobody said it was easy,no one ever said it would be this hard…. Oh take me back to the start.🎼

Do you remember the time when you learnt to walk and talk? Or when you’re parents used to bath you, feed you, brush your teeth and hair, tie your shoelaces, put your clothes on, even wipe your peachy little bum? Do you remember when you learnt to write? No? Me neither. We don’t remember because our brain was still developing. We learnt over time to develop these skills but it didn’t really stress us out because we never knew them so it was easier to just let our mums do it for us.  We don’t really remember these times because they’re the norm to you, you do these things without thought now. One thing I’ll guarantee that you don’t remember is your first breath. 

I’m asking these questions because when you’re living with MND you gradually lose all these abilities that you take for granted. When you’re a baby you don’t care that you can’t ride a bike or write because it’s not important to you, all you want to do is eat, laugh, cry, shit and sleep. Anything else is a bonus! 

For the last 5 years I’ve been turning into a baby, I even slobber from time to time. Not the best look if I’m honest but when your mouth feels like Niagra falls there’s not much you can do about it. With MND you unlearn all the basic skills you learnt as a kid. In my head I can still do these things but physically it’s impossible. I can’t even kick a football now or a striker for that matter!!  I’ve been kicking a ball since I took my first steps so it’s a bitter pill to swallow. I can’t feed myself, dress myself, brush my own teeth, I can’t even go the karzie on my own! I watch my lad Vinny learning to play guitar bursting with pride but I’m gutted because I can’t jam a few tunes with him. I can’t even pick a guitar up now never mind strum a few chords.  

People struggle to understand me now because I can’t really talk, a bit like a baby. When I’m walking it’s like a child taking his first steps. I went to me  mates mums birthday party the other week and I was walking back to my chair a bit wobbly some fella said “You’ve had a bit too much to drink there pal.” “I wish mate.” Imagine me with a bevy in me, I’d be like bambi on ice!!. I couldn’t handle me ale at the best of times never mind whilst  fighting this bastard. 

🎼 I cannot move, my fingers are all tied in a knot. I don’t have the strength to get up and take another shot, and my best friend my doctor won’t even say how long I’ve got.🎼

Going underground. 

A question most people don’t like to hear is “What songs do you want playing at your funeral?.” Well I’ve had a lot of time to think about this. To most people it might be a bit morbid. To me and the rest of the MND community it’s a realistic conundrum. If I’m honest it changes every week. One week I’ll be in a mellow mood and it’ll be a Pink Floyd tune, the next week I’ll be a bit angry an it’ll be the Foo Fighters. MND moods? I could make a decent CD out of that. 

I’ll listen to anything from Bob Dylan to Eminem, Led Zeppelin to Stevie Wonder, Aretha Franklin to the late great Robert Johnson. I’ve been to hundreds of concert over the last 30 odd years. It’s hard to pick a favourite one. Roger Waters performing Pink Floyd’s the wall album was a highlight. The visual aspect of it was unbelievable. The Rolling Stones in Hyde park was a high energy concert. Their lead singer has definitely got the moves like Jagger! Bob Dylan at Glasgow a couple of years ago was an experience, showing even at the tender age of 71 he still held an audience in the palm of his hand. 

Anyway getting back to the tunes you want to hear whilst lying in your box. I’ve got a few requests. The Rolling Stones “Gimme shelter” is a definite, a proper rock n roll song that kicks ass. Exodus by Bob Marley. I’ve loved this song since I was 10 years old. My older brother was a huge Bob fan and he always had him blasting out of his bedroom, aswell as a load of smoke!! I was going to put Monty Pythons “Always look on the bright side of life” but it could be seen as a bit blasphemous in church!! It would’ve been funny watching the priests face as I’m carried up the aisle with Eric Idle and his mates giving it loads. There’s a few more to add but I want them to be surprises. I might  finish with the Jams number 1 from the 80’s “Going underground” just for the giggle factor. 

I think we’ll show these videos at the end to get people smiling 

Hopefully that day is a long way away. Ill keep fighting as long as I can to keep death at bay. As Blue oyster cult once sang “Don’t fear the reaper.” 

Music is a great healer.

Thanks for your continued support and please keep supporting the MND community. I’m in my sixth year living with MND, over half of those diagnosed will sadly die within two years. A scary statistic that makes me realise I’m a very lucky man.

We lost another MND warrior recently who I was on a clinical trial with. RIP Aiden, we had some laughs mate. 

Enjoy life and smile. 

To be continued…

Mark

🎼 When you’re sad and when you’re lonely and you haven’t got a friend. Just remember that death is not the end. When you’re standing on the cross-roads that you cannot comprehend. Just remember that death is not the end. And all your dreams have vanished And you don’t know what’s up the bend. Just remember that death is not the end.🎼 

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Posted by: mads04 | March 31, 2016

Get up, Stand up. 

If you live in the UK you may be aware that the government tried to cut financial benefits off disabled people. A shithouse trick in my book and they would’ve gotten away with it if it weren’t for those pesky kids!! When I say pesky kids, I mean the British public. The backlash was so severe that the government had to reverse its decision not to financially punish disabled people simply because we are erm… Disabled. 

When diagnosed with MND, I received no disability benefits for six months simply because I never had the right support whilst filling out the benefits form. Bear in mind the doctors had basically told me I’ll probably die within 12 months! I only went on the higher rate of disability allowance  18 months ago, so for 3 years I was on nothing, then lower and middle rate money. The whole system is flawed. How the hell can you go on all 3 rates of disability payments with a terminal illness that gives you a 2-5 year life expectancy?  I even had to attend an interview to see if I could go back to work a year after diagnosis! You couldn’t make this shit up. 

The MND charter was delivered to 10 Downing Street last year, the charter is a petition designed to help people living with MND get quicker access to benefits (see above) and medical needs etc. A reception was held by the MND association to celebrate this and 77 of the country’s MPs attended,  all posing for pictures with people with MND and claiming they’ll do everything they can to help us. Good stuff I thought, even though I was sceptical at the time about most of the MPs who attended that day. Some MPs will use an opportunity like this to get votes, that’s the reality of politics. 34 MPs of the 77 who attended that day, voted to cut £30 a week from disability benefits. I’ve explained my worries about these MPs in earlier blogs and to the chief executive of the MNDA at the time of the reception. The MND association can try and explain it as nicely as they can, but the bottom line is these people who enjoyed their free champagne at the charter reception, stabbed those very same people who they posed for photographs with and the rest of the MND community in the back. MND problems at the very highest level.

http://youtu.be/2u7DL4M0Hh8

The MNDA held a reception last week attended by her royal highness princess Anne, who’s the Royal patron for them. It was also attended by people living with MND and some who work and volunteer for the MNDA. I think my invite got lost in the post again. Now I’ve got nothing against princess Anne and it’s good that we’ve got a Royal representing us but I’ve been watching prince William on the telly recently talking about saving animals in Africa. Prince Harry has been on telly many times supporting army veterans who’ve been injured during conflict. He even organised the fantastic “Invictus” games in London for army veteran amputee athletes. When was the last time we seen princess Anne on the telly asking the nation to support people living with MND??? Just a thought! 

Ive read people’s comments about meeting the princess and how much of a privilege it was, which is fair enough but let’s get one thing straight, the privilege should be the princesses meeting people with MND . If I had a choice of going to meet the queen or someone with MND there’s only one winner, sorry Liz but you’ve been jibbed! 

People may think I’m antiestablishment or anti authority, I’m not I just don’t suffer fools easily and I’ll definitely stand up, maybe a bit unsteadily now for what I believe in. 

My mum brought me up to treat every person the same, no one is different to anyone else, if I met a billionaire I’d treat them exactly the same as I would if I met a homeless person. I instill the same values into my own kids. Maybe this is why I’ve clashed with the association so much. They pamper MPs and it clearly hasn’t worked, now is the time to put some pressure on the cowards that stabbed us in the back. The MNDA was founded on good people wanting to do the right thing but somewhere along the way got lost in a snobbish culture and it’s never gone away. My mate Will said it right when he told me “It’s an institution mate, not an association. they’ll never change”.   By the way the board of trustees for the MNDA all voted unanimously against supporting the boxing and mixed martial arts community in helping people with MND. No comment!! 

Wheels on fire.

I’ve had a new wheelchair delivered and it’s shit hot. The only problem we have is I have to get it modified to suit me best because my arms are that weak I can’t control it properly using just my right hand(steady on boys!!) I’ve already taken a coat of paint off the back door with my learner plates on! I’m getting a tray across the chair so the controller can be used in the middle of the tray with both hands. The wheelchair had a bit of a strange effect on our house. It brought home the reality of MND. To ease the tension I said to Jayne “Look, I don’t want this to have a negative impact on the house, so let’s turn it into a positive. I’m not ready to go into it yet permanently, the fact that it’s here only spurs me on even more. I’m gonna try and keep walking as long as I can.” 

Jayne was also worried about the kids reaction to seeing it when they got home from school. So we decided  to lighten the mood a bit when they arrived, I sat in the chair with my back to them, spun the chair around and in true baddie style said “I’ve been expecting you Mr Bond.” 

If you grew up during the 80’s you’ll probably remember the games console Atari. It had a joystick and a button that you held with two hands whilst playing asteroids. That’s what my hand controller will be like. So if you see someone whizzing down the street looking like he’s playing space invaders, don’t worry  as Harry Enfield once famously said “It’s only me”

Please keep supporting the mnd community and raising awareness. Thanks for you’re kind comments and constant support. Mnd won’t beat me. 

Enjoy life.

To be continued…

Mark 

PS. Has anyone got a spare tin of white gloss??? 

Me in the beast with a few working class heroes. 

There are places I remember…  

Posted by: mads04 | January 19, 2016

One More Round…

I’m currently waiting on a decision from the MND association about wether they’re going to come out of the dark ages and support  boxing and mixed martial arts (MMA) in raising awareness for MND. At first they point blank refused to support the fight community in helping people with MND. I emailed them a few times after they’re initial refusal and now the board of trustees are finally having a meeting at the end of this month to discuss it. Im passionate about this because I’ve loved boxing since I was a kid. It was hard not to growing up watching Rocky! My dislocated toe the other week actually looked like Rocky’s face before and after the fight against Apollo!! 

I completed my boxing coaches licence 2 and a half years after diagnosis and I’m extremely proud of that. I’m not exactly on par with Freddie Roach now but it was a big personal achievement for me, especially with my guard and stance being about as useful as a tube of non-stick glue.!! I remember the assessor asking everyone at the start of the course, “Has anyone got any medical issues or injuries I should know about?” He looked a bit stunned when I explained what MND was, I don’t think he expected to see a terminally ill person turn up for his course that day! He was brilliant with me though and told me at the end of the course that he had the upmost respect for me and wished me well in my fight against this heavyweight killer. He also said I could do with working a bit more on my hand speed!! It’s not happening mate. Blame MND!  

I also loved Bruce lee growing up and he’s definitely up there with Hong Kong Phooey as my ultimate martial arts hero. 

hongkong 079

Nine months after diagnosis in Hong Kong with the legends statue; Bucket list: Ticked ✔️

The fight community have been excellent in supporting myself and other MND Warriors around the world but especially in the uk. I’ve been on at the association for a while now about trying to get the fight community involved with MND awareness.

I didn’t know it was something the MNDA frowned upon until I started tweeting pics of myself and members of the fight community. The MNDA Twitter page just kept ignoring my tweets, nothing strange there If I’m honest but it done my head in, so I asked them what the score was. They told me they’d asked their researchers and they told the MNDA that boxing causes brain damage! Wow, really?? Fuckin ell, I was lost for words and it had nothing to do with MND! So I told them that’s the craziest and most inaccurate statement I’ve read in a long time. What would happen if God forbid a boxer  was diagnosed with MND? Would they refuse to support him because of his chosen occupation? I think there’s a bit more to it. I think they don’t want to be associated with boxing because theirs still some snobs in this country who think boxing is an ancient barbaric sport. The only thing ancient about this whole episode is their views about it. I fully understand why they’re reluctant to get involved because MND is a neurological condition but we’re missing out on a potential audience simply because of outdated statistics and old fashioned views. Boxing is and always has been one of the UK’s most watched sports. There’s a huge audience for it. 

My mate Richie Downes is a mixed martial artist who’s dad sadly passed away with MND about 8 years ago. At the time of his dad’s diagnosis Richie was involved in big fights in the uk and was willing to do anything to help raise awareness for MND. The MND merseyside branch at the time didn’t know how to go about having a “Cage fighter” on board to help raise awareness so they basically ignored him which as you can imagine didn’t give Richie any confidence in getting involved. It’s only because of my involvement with MND that Richie got back on board. He’s helped raised thousands for the branch over the last few years and we’ve forged a friendship that I’m genuinely thankful for.

 

Me and Richie at a MND ball a few years ago . He cares passionately about raising awareness for MND

 
IMG_0760

Mark Scanlon, ex UFC fighter and Shea Neary ex World light welterweight champion supporting MND Awareness. Both great lads

IMG_0206

Derry Mathews former world featherweight champion and current interim world lightweight champion supporting MND Awareness. Great lad who will do anything to help promote MND

 

  

The Smith brothers Callum, former international super middleweight champion. Paul, former light middleweight world title challenger and commonwealth games silver medalist. Liam, current light middleweight world champion and Stephen, former commonwealth games and British featherweight champion. All supporting MND awareness. All great lads.

  

Natasha Jonas ex boxer and first female boxer to represent team GB at an olympic games. I done my coaches boxing licence with Tasha. She’s inspired many young people to take up the sport and has been a big supporter for MND awareness

Ste Harkin ex British masters light middleweight champion. I met Ste on the coaching course with Tasha. Great lad who’s supported MND awareness ever since

I’ve had support off other boxers and their coaches such as David Price and Rocky Fielding from Liverpool. I also know Hull boxer Tommy Coyle has supported Lee Newton who has MND and runs the brilliant love life foundation to help people living with MND. To me, getting the fight community involved is a must.The boxing and MMA community in the UK is huge and the people who I’ve came across over the last few years are the salt of the earth. I never asked these fighters to get onboard, they just heard my story.

Regarding MND awareness, we have everything to gain and nothing to lose by getting the fight community involved. Fighters respect other fighters and the people who are fighting for their lives in the world of MND need all the support they can get. 

Please keep supporting MND awareness and the MND community. Thank you 

Keep smiling and enjoy life. 

To be continued… 

Mark   

  

Posted by: mads04 | January 14, 2016

Free fallin / Owner of a lonely heart 

Free fallin…

I fell down the stairs before Christmas. I came down early in the morning, missed a step and torpedoed down into the hallway wall. When I landed I quickly realised I’d broke my little toe. Jayne ran down screaming “Are you ok?” “I’m ok but I think I’ve broke my toe.” I said, “How do you know?” She asked. So I started laughing and said “look” gesturing down at my left foot. All my toes we’re pointing north apart from my little toe which was pointing east. It was now I realised I’d dislocated it and not broken it. We both started laughing, I’ve always had a high tolerance for pain so a dislocated toe isn’t going to send me into a panic. I hobbled into the living room and Jayne suggested she put it back in place “Sound, I can’t be arsed going the hozzy” so that’s what she did popped it back in and that was that. A few years ago Jayne would’ve panicked and insisted we go the hospital and ring all my nurses to let them know, now it’s just a normal day and we just get on with it. Part of living with this terminal illness is accepting and adapting to  what it throws at you. We never know what the day might bring that’s why we take each day as it comes now. That’s a bit of a cliche but it’s definitely a way of life in the world of MND. 

Owner of a lonely heart…

I imagine most terminal illnesses to be a bit lonely from time to time but the longer you live with MND the lonelier it becomes. I’ve spoken with several people who’ve had MND longer than I have and we all agree that the people who die early on with this disease are the lucky ones, if you can use the word lucky in the world of MND. 

I met a man with MND a few years ago, who had had MND for 6 years, still walking and talking. It was brilliant to meet him. He was a scouser and a top man. He gave me valuable advice on living with MND. He told me the longer you have MND the more isolated you’ll become, at first I didn’t really understand what he meant. He said “People will come and go Mark, they’ll be in your life for a bit then they’ll leave.” I told him that could be life in general though. “No Mark, MND’s different mate.” The longer I’ve had MND the more I’ve realised his words to be true. I still find it amazing that some people still don’t know how to act or say when they see me. I’m still me, I always will be. 

I’ve watched people who I’ve known for most of my life slowly drift away. I’ve watched people who I met through the MND association who work and volunteer for them slowly drift away because I have an opinion, yet there all over social media claiming “they’re absolutely dedicated to supporting people with MND.”  I’ve watched some of Jaynes friends slowly drift away. Imagine how lonely it is for her at times. It’s not nice but that’s life with MND.  I haven’t changed, I’m still here, I don’t stink of Billy Ocean, I use decent deodorant! When you can’t do the “normal” things in life people distance themselves from you. Am I disappointed in these people? Of course I am but that’s life. They obviously have their reasons. I just wish they would be honest with me and we could move on. Listen, I’m not moaning and I don’t want people to start feeling sorry for me, far from it. I’m just being what I’ve always been in my blogs; Honest. 

I’ve been in touch with a few people recently diagnosed over the last few months all under 30. What can I tell them? Everything’s gonna be ok? Life with MND is a doddle? No, I’m honest with them because I wish somebody was honest with me in 2010. I tell them to go and enjoy life, if you want to do something do it. Every person I speak to with MND tell me the same thing that they have learnt more from talking to someone living with MND than speaking to someone from the MNDA or a medical professional. One person told me their GP told them “Don’t exercise and rest up” Seriously?? Why would you tell someone that? Rest up and think about death or get off your arse and live you’re life? There’s only one winner for me. I haven’t got a secret formula or a magic wand to wave and make it all ok. I just try and offer support and guidance as well as an honest insight into what to expect in the world of MND. I’ve yet to meet someone with MND who wants to sugarcoat this illness. It’s a killer there’s no other word for it. 

Unless it affects someone high up in the government, no change will be made legally and that’s the harsh truth. If you’re a regular reader of my blogs you’ll know that I don’t trust anyone in authority when it comes to MND issues. I’ve got good reason not to. If we continue to fanny around the MPs who are supposedly voted into power to help the people, then we will continue to swim against the tide in trying to make changes in improving quality of life for people with MND. I can’t even swim now so what fuckin chance have I got?? 

http://www.bbc.co.uk/news/uk-scotland-scotland-politics-35228435

Please read the link above and see what shit goes on in the world of MND , broken promises. 

MND can be a lonely place at times even with good support around you. Please keep supporting the MND community and please keep raising MND awareness. Thank you. 

Enjoy life and keep smiling.

To be continued…

Mark 

Posted by: mads04 | December 29, 2015

Forever young. Part 2

In the course of our lives we will  go through a lot of journey’s and we learn things everyday. I want to watch my kids go through some of those journey’s, some will be good some will be bad. That’s life! 

If you’ve ever learnt to play a musical instrument you’ll know that it can be an extremely frustrating journey but also a rewarding one. My youngest kids are learning the guitar and piano and I want to be with them and watch their frustrations and achievements whilst learning. When I first got a guitar at 16 It took me 6 months to learn Led Zeppelin’s “Stairway to Heaven” and by the time I’d learnt it I was sick of listening to it. We got our Vinny an electric guitar and an amp for Christmas and he already thinks he’s Eric Clapton. Now I love Clapton but there’s only so many times we can listen to “Sunshine of your love” blasting out on full overdrive settings!! 

I know I’m a lucky man to have watched my kids open their Christmas presents this year. I’m also extremely skint now! Parent problems not MND problems. I’ve always been better at giving presents than receiving them so watching the kids open their prezzies always brings a huge smile to my face. For most people now the presents are all over, well not in my house it’s not. My little girl Bo is 7 going on 28 on New Year’s Eve and my little boy Vinny  is 10 two days later. They don’t know the full extent of MND they’re to young to know. They just think dads not well, or as our Bo puts it “me dads hands don’t work properly” They help all they can and when I pump water into my peg-tube to keep me hydrated it’s meant to be pumped in slowly by syringe to stop me from feeling bloated. Nurse Bo is too impatient for that so she just goes for it a 100 miles an hour and says “All done now dad.” Whilst I’m sat there smiling, feeling like a water balloon.! They’re good kids and don’t  deserve to know what MND is. I’ve said before I can take whatever MND throws at me but it’s tough watching my family having to live through every setback, every fall and every choking episode with me. 

The day my little girl was born in 2008 I worked out the maths and realised that two of my three kids would be 18 and 21 within a couple of days of each other, a week after chrimbo! Holy shit!!! We timed that well. Now I know the odds of me surviving until then are about as thin as my arms but I’ll try my best to get there. I’m already saving for their joint party, I’m also scoping several banks out! Imagine me trying to rob a bank.! It would be the slowest getaway ever! 

Happy birthday Vinny and Bo. You’re strength keeps me strong, you’re laughter keeps me smiling and you’re love keeps me alive.

May you stay Forever Young XX 

Happy new year everyone and thanks for your continued support. Please keep supporting the MND community and raising MND awareness. 

Keep smiling, stay positive and most of all Enjoy life.

To be continued…

Mark 

Posted by: mads04 | December 24, 2015

Tomorrow is a long time…

Tomorrow is a long time in the world of Motor neurone disease, what I mean by that is you can plan to do things for tomorrow but in reality a lot can happen before you get there. I suppose you could say the same about life in general, why worry about the future when we could get ran over by a bus tomorrow! I have my own little mantra when I’m having a bad day, “There’s always tomorrow.” I know that no matter how bad things get life goes on. I don’t want my house to be an MND patients house, I don’t want my mates coming here and feeling awkward, I don’t want my kids to be wary of having fun in the house because dads not well. My house is chaos and that’s the way I want it.  I don’t want medical professionals coming here and being all serious. I can’t stand it so I usually make a joke about MND or when I go the hospital and the nurses ask “how I’m doing.” I’ll start performing forward lunges and try and do a bit of shadow boxing saying “I’m back in training next week.” It always gets a smile and sets my appointment up exactly the way I want it. Life’s too short to be serious. 

It was around this time 5 years ago I was told to make the most of that years Christmas. The doctor couldn’t give me a time frame for my life expectancy, so he just said “Make the most of this Christmas Mark” my kids at the time were 10, 4 and 1. I appreciated his honesty but he cost me a right few quid that year!! 

Christmas with a terminal illness is a very surreal feeling. The first year was the worst. Whilst everyone was opening their presents and smiling I couldn’t help thinking is this it? Is this the last Christmas I’ll spend with my family opening presents? Watching my kids faces light up? Tracking Santa on the laptop? Leaving carrots and mince pies out? Putting a bike together? I actually don’t miss that! Watching the wizard of oz ? It was also a bit of a turning point for me. Doing all that with my family on Christmas Day also made me think this can’t be it, I’m too young to die, my kids are to young to be without a dad. It wasn’t easy I never just decided I’m not going anywhere. MND doesn’t work like that.  It took time to sort my shit out, A lot of soul searching went on in my head. I realised I’m extremely lucky. I also realised I’m a stubborn bastard but trust me that’s not a bad thing when MND is involved. I’m very lucky to be surrounded by people who love me. 

As you can imagine people affected with MND tend to treat Christmas with joy and sadness. For me I’ll enjoy watching the kids open their presents, enjoy the chaos and smile, knowing I’ve survived 5 Christmas mornings since 2010 and that I’m enjoying life no matter what MND throws at me. 

Thanks for everyone’s support this year. We’ve lost thousands of MND  Warriors this year and we will lose thousands more next year. This illness is so much underfunded that it could be another 20-30 years before a breakthrough can be found. That’s not me being pessimistic its me being realistic. Please keep supporting the MND community and promoting MND awareness. 

Merry Christmas and a happy new year. Be positive and smile. 

Enjoy life.

To be continued…

Mark 

Posted by: mads04 | November 29, 2015

Mind games: the placebo effect.

Placebo effect: Also called the placebo response. A remarkable phenomenon in which a placebo — a fake treatment, an inactive substance like sugar, distilled water, or saline solution — can sometimes improve a patient’s condition simply because the person has the expectation that it will be helpful.

The placebo effect is instilled into us from a very early age and most of us don’t realise it. When we had a fall and grazed our knee as a kid, our mums cleaned the cut and put a plaster on it. Then what did she say? “You’ll be fine now the magic plaster will make it better.” As a rule mum knows best so we believed her. The plaster has done nothing to make it better but because our mum has mentioned “magic” and “it’s better” were not crying anymore. Honestly, our house as a kid kept band-aid in business, I had more cuts than Rambo! 

We take the placebo effect into adulthood aswell. How many times do we see professional sportsmen/women get injured on the pitch, the physio runs on, gets the magic water out, applies it, tells them they’re OK and the player gets up and carries on. Magic? No it’s mind games. The reason I’m going on about the placebo effect is because I’ve experienced it more than once whilst living with MND.

Just after I was diagnosed I was fortunate enough to qualify for a new drugs trial called dexpramipexole, try saying that after a few pints! It was a placebo trial which means half of us on the trial were on the placebo and the other half on the trial drug. When you’re diagnosed with MND you’re given two hopes, no hope and Bob Hope! So a trial represented hope to me. I’d only just been diagnosed so I didn’t have a clue how it all worked but after speaking to my clinical trials nurses, who were absolutely bang on with me from day one.I felt privileged to be involved and I was positive from the start. The trial was meant to last 12 months but was extended to 18 months. The trial consisted of weekly appointments for a few months then monthly appointments of giving blood, lung function tests and sniff tests etc. At the end of the trial all the data from it went back to America and we had to wait to see if we were on the real drug or a placebo. I was convinced I was on dexpramipexole. I felt OK during that 18 month period. I was jumping out of planes(obviously with a fuckin parachute on). I was running marathons, recording albums, doing gigs, I even went in for my boxing coaches license. I can’t even put me dukes up now never mind slip a punch!  About 6 months after the trial, I found out I was on the placebo. In a way I was glad because I knew then that my mental state was strong as fuck! The placebo effect had done its job with me. 

There were 102 patients on the trial worldwide. I was on it with 2 men from the northwest of England. Unfortunately they’ve both lost their battle with MND. 

The second trial I was on was tiramestiv. It was a muscle strength drug which hopefully might slow MND down a bit. Again it was a placebo trial worldwide. At you’re first appointment you were given the real drug for a week because it basically sent you off your cake for a few days, so if you went straight into the placebo trial you would definitely know if you were on the real drug because you’d be constantly listening to Pink Floyd and watching Cheech and Chong movies! Anyway after a week of being fuckin smashed we all started the real trial. At the time I was losing weight and during the 3 months that the trial lasted I was eating like a horse which is a good thing for someone with MND. MND wastes away your muscles so the more fat we gain the better. I’m a proper fuckin salad dodger now!  I was convinced it was the drug that was giving me this crazy appetite. At every appointment during the trial we had to perform strength tests which would include gripping a machine with you’re hand and squeezing as hard as you can to measure if you’re getting stronger. During the three months my strength in my hands was improving. I used to have arms like Popeye now I’ve got arms like Olive Oil, so when I used to walk into the clinical trial department, I’d get my guns out and say “Look at the fuckin arms on me girls” to my nurses. The nurses were always up for a laugh and knew it would be a lively day when I was in. After the trial ended, again we had to wait a few months to find out if we were on placebo or the tiramestiv. I was convinced I was on the drug. I’d gained weight, I was feeling strong and I was actually winning arm wrestling contests with my 4 year old daughter again!! So when my nurses told me I was on the placebo tablet, everyone was surprised to say the least. I’d well and truly been placebo’d again.

We should use the placebo effect more in the world of MND. The brain is our most powerful tool. If we convince ourselves were not well we inevitably become sick, but if we tell ourselves were fine, nine times out of ten we’ll be OK. I’m convinced I’ve got this far with MND with a positive mindset. I’ve done things with MND that I would never have dreamt of before I was diagnosed. Strange but true. 

You’re brain can achieve amazing things, make sure you use it wisely. 

Just a quick point about the difference between my clinical trial nurses and the hierarchy at the MND association, who continually refuse to promote my blogs. The nurses are completely open minded about MND. They have to be in the job they are in. They print and give my blogs out to people not just with MND but medical professionals and people who have other terminal and life threatening illnesses. They have told me some patients have found strength and encouragement from my writing. Job done for me. My nurses gave me hope when there was none to be given. I’m forever grateful to them and will always hold them in the highest regard. Working class heroes. X

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These nurses don’t like the spotlight and they will be looking at these pictures saying “Look at the head on me? I’m gonna kill you Mark!” Sorry girls ha ha X 

This is a video we filmed on encouraging people to take part in clinical trials. I actually watched this saying “Look at the head on me.” Revenge is sweet girls!!  

Please keep supporting the MND community and MND awareness. This illness is seriously underfunded for research and quality of life. MND is killing more and more people every year but with the help and support of genuine people like my nurses, hopefully a cure can be found. 

Enjoy life. 

To be continued…

Mark 

Ps. Since my last blog we’ve lost another couple of MND Warriors who I connected with via Twitter. RIP Ali X RIP Lena X my thoughts are with you’re family and friends.

Posted by: mads04 | November 15, 2015

Billy Bullshitters

When living with MND you learn to live with bull-shitters, bull-shit off people you think you know, bull-shit off people you don’t know. 

I met a so called financial expert who was at my first appointment at the MND rehab centre. His name was Tom Hughes. I thought he was helpful at first because dealing with a benefits form when you’ve never done it before is like a mine field. So super Tom is telling me not to worry he’ll guide me through it all and help as much as he can. Over the next 3 weeks I rang him several times leaving voicemails to no avail. I had to fill the form in myself, didn’t have a clue how to do it and got a reply to say I’m not entitled to the higher rate of disability benefit but I was entitled to the lowest rate of £55 a week. Hallelujah!! This whole process took 6 months. So that was 6 months of no income with a mortgage to pay and 3 young children to support. Welcome to MND benefits street!. Than ks for that Tom! I bumped into this knobhead about two years later at the MND rehabilitation centre, he tried to say hello and even though I was two years in with MND, I still had a decent death stare. He got the message and walked off. 

The amount of information you have to take in at you’re first appointment is scary. Talking to several medical professionals about life with MND. It’s a whirlwind and surreal experience but the people are there to help you.  You should be introduced to someone working for the MND association at this appointment. I met a lady called Kathy James who has since retired, she was a nice person who did her best for people living with MND in the merseyside area. Kathy came to my house a few times to discuss how the association can help me and my family. After trying to get my head around life with MND I appreciated Kathys support. 

I’ve never seen the person who took over Kathys role with the MNDA, even though Kathy retired over 2 years ago. False promises are something I’ve found over the last 5 years that the MND association excel in. 

Chris James who works for the association as external director (He couldn’t direct traffic) is the biggest bullshitter I’ve come across, this was the same man who asked me to delay the mime for MND campaign because it clashed with the MNDA campaign. He hasn’t got a clue about life with MND, yet this fella has told me so much shit it’s beyond me how he has a job. Every time he got in touch with me he was apologising for actions of MNDA staff but was doing nothing to address the problem. He came to a meeting at my house about a year ago with a colleague, coming from London to Liverpool via train. He was here for about 90 minutes to basically try and get me to go easy on the association on Twitter. God forbid that even though I have MND I’m not allowed speak my mind. When he left I couldn’t help think that the people who raise money for MND have just paid for Chris and his colleague to come to Liverpool and was a complete waste of time. 

I told Chris at this meeting I was a bit pissed off with a few things the association were doing regarding awareness etc. I felt we done brilliantly with the football v MND campaign. It was a huge success but the association never followed it up and capitalised on the awareness raised. Something Sally Light agreed with me on nine months after this meeting.  I also told him that I’ll always be honest with him so I expect the same from him. The reason I told him this was because earlier on that year, the association lost my trust over where a £10,000 donation on my behalf ended up. I was promised it would go to people on merseyside but half of it ended up in MNDA headquarters. I might aswell have been talking to a brick wall because he loves a fib this fella. 

He agreed with me that some people who are used in MNDA campaigns should get better support after the campaign has finished. The MNDA need people with MND and when they’re finished with them, its onto the “next victim”. Only a few of us experience this because not many survive long after. 

Emma Johns works for the association and was hugely involved with the football campaign. During the campaign Emma would be on the phone constantly, “Mark would you be able to go to such an such a place and promote the football campaign?” “No worries” was always my answer. Not once did I refuse to go anywhere for the cause. Whether I was having a bad day or not. I remember Jayne saying to me after a hectic day “I think they (MNDA) forget you’ve actually got MND sometimes Mark” she was right, but at the time I was focused on raising awareness. The last time I heard off Emma was around 18 months ago. I suppose it was job done for her. An email costs nothing! 

In the end I got fed up of emailing Chris and emailed Sally Light who’s the chief executive of the association. Some of the bullshit she spun me was up there with the best I’ve heard. She told me the usual copyright crap over mime, and also telling me she didn’t think Twitter was a good awareness raising tool for MND. If it wasn’t for Twitter and social media  I would never have got involved with MND merseyside, and more importantly, the ice bucket challenge wouldn’t have been so successful. In fact when the association first seen the ice bucket challenge they refused to back the campaign, claiming it wouldn’t catch on!! £7.5 million later, you couldn’t make this shit up could you? Make what you want of that but I find it bizarre. It just proves to me again that the hierarchy at the association haven’t got a forward thinking brain between them. 

Social media is free advertising and the association have made it quite clear they’re not going to fund a TV advert campaign. So why not try a social media campaign? 

Imagine sitting in you’re home watching an advert on TV about the donkey sanctuary and how you can donate to help save donkeys all around the world. Now I love animals and I’m all for saving Eddie Murphy and his mates but how come our four legged friends have got an advert and people living with MND haven’t? 

I asked her why the association never got behind me and my friends when we achieved 100 miles with MND. She gave me excuses ranging from the association thought a couple of re-tweets on Twitter were sufficient to she thought the association might have missed it because of the ice bucket challenge. That makes sense doesn’t it? Billy bullshitter!! If I had terminal cancer and completed 100 miles over an 18 month period for cancer research do you think they would’ve ignored it? I thought it was a valid question but Sally never answered it. To be fair to Sally she’s not alone in this. I asked Chris james the same question and surprise surprise he never answered it either!!. 

The association never thanked us or congratulated us on achieving 100 miles with MND. We achieved 100 miles in various races over an 18 month period. A period in which over half the people diagnosed with MND will sadly lose their battle. A couple of re-tweets on Twitter was deemed sufficient by the hierarchy of the association for this achievement. I found that insulting and embarrassing on the association’s part. I don’t need recognition or thanks for what I achieve with MND, I’m not in it for that, I do what I do to help give a voice to people living with MND, but the people who achieved it with me should’ve been thanked by the MNDA. To say they thought a couple of re-tweets were sufficient for our achievement was basically telling me it meant fuck all. Thanks for that Sally. 

The association, in my opinion would rather promote an MND patient sitting in their wheelchair being spoon fed by a loved one, than an MND  patient achieving something. They must think it was easy to do 100 miles with MND. Well I’ve got news for them if it was that easy how come I’m the only person on the planet to have ran/walked it??? 

Sally tried to convince me the MNDA  couldn’t promote or re-tweet a mime video because she was afraid the artist who’s song was getting used might sue the MNDA!! Lets just look at that statement. 

Number 1, It’s bullshit! Number 2, Who is going to sue a charity because someone’s mimed a song of theirs? Number 3, It’s bullshit! Number 4, Even if the artist tried it and they wouldn’t, it would raise MND Awareness and get the public on the association’s side. Finally number 5, Not sure if I’ve mentioned this but it’s still bullshit!!. 

I had a meeting the other week with Alun Owen who’s chairman of the trustees for the association and it seems Sally’s been telling him fibs as well. Alun told me that Sally informed him that she offered to come and see me personally during our emails, To which I told Alun she never and the truth was at the end of a months worth of emails and getting no where. I told her the fact that she’s never asked for a face to face meeting tells me everything I need to know about her. She apologised and said she assumed I mightn’t be in the best of health for a meeting. She was wrong to assume. She was also wrong to tell lies to Alun, who I could tell wasn’t to pleased when I told him the truth and also offered to show him the emails to prove it. Billy bullshitter!

A big thing for me were the MNDA let themselves down is they’re terrified of being controversial. It’s all too nice, they have restrictions on what to promote which to me is a contradiction in itself. MND doesn’t care who it kills, so why do the association have restrictions on what they do to promote MND awareness. They arse lick MPs who couldn’t give a shit about us. George Osborne and that other prick Ian Duncan Smith are cutting benefits off the most weak and vulnerable. People living with MND are at the forefront of this. The MNDA held a parliamentary reception for MPs in June at Westminster to celebrate delivering the MND charter, A signed petition  which is directed at getting people with MND quicker access to medical supplies and financial issues etc, lording them like VIPs. The very next day the MND campaigns Twitter page were tweeting please email you’re MP to stop the government cutting benefits for people with MND! How does that work? One day you’re drinking champagne with them. The next day you’re asking us to email them because their gonna cut our benefits. Confused? I was. 

I don’t get this obsession with MPs. I understand we need to keep them close but when so many of them blatantly lie, sooner or later you have to say “Stop the lies, people are dying without the correct support and care so let’s see some action.” There’s a meeting next month in Westminster regarding our rights and the association are again asking the public to email their MPs to attend. Well here’s an idea, the MPs that don’t turn up for it but enjoyed their champagne in June. Fuckin name and shame them! The MNDA are terrified of them, so what chance have we got? 

I remember being asked to talk at a conference with local MPs and the Lord Mayor in Liverpool about living with MND. Kathy james asked me and I thought it would be a good chance to raise some awareness. I always try and break the ice with people with a joke or I’ll take the piss out of myself and my MND, just so people don’t act strange with me. It doesn’t always work but mostly it does. So with so many MPs in the room and the knowledge that half of them had been caught fiddling their travel expenses at the taxpayers expense not long before, I thought I’d have a little fun at their expense (excuse the pun). I started by saying, “I hope when you signed into the building at reception, that you didn’t think it was your travel expenses form.” Most of the MPs in the room squirmed in their seats whilst the non MPs laughed out loud. Awkward!!  

During the general election my local MP Stephen Twigg, remember he’s the one who got 2 free £30 tickets for an MND merseyside ball when the rest of us living with MND actually paid for ours. He’s also a patron for MND merseyside. Well anyway, his cronies knocked at my house asking “Could Stephen rely on our vote?.” Jayne quickly told them the situation and our disgust at his lack of support for someone living in his constituency with MND. They apologised and said Stephen might knock later and have a chat, as he was just down the road talking to my neighbours. Unsurprisingly, he never knocked but some of his lap dogs followed me on Twitter obviously hoping it might get my vote! And after the election, they all unfollowed me. Which pretty much sums them all up!! Billy bullshitters.

The majority of people I’ve met involved with MND have been fantastic. It’s sad that I’ve had to write about people in a negative way but I’d be kidding myself if I didn’t. I’ve praised people when they’ve done good things. I also need to be honest when people become Billy bullshitters!!. Unfortunately I’ve found a few people out over time. Egos and bullshitters. That’s life.

Life with MND is hard enough without the people who should be supporting you, bullshitting you. Not everyone who works for the association have been like this. They have good people working for them and even better volunteers who work tirelessly for the cause. I have never, and would never discourage anyone to help raise money for the MNDA, far from it , I see the bigger picture, unfortunately certain people at the MNDA don’t.

Its been 5 years now since I was diagnosed. I realise I’m extremely lucky to be alive. I wouldn’t be here now without the love and support of my family and friends. I can’t thank you enough. I’ve also met and connected with new friends who have supported me along the way. You have all helped me achieve amazing things with the “worst disease known to science” 

I hope my blogs have helped you in some small way. I know your support has helped me immensely. 

Below are a shit load of pictures of our journey with MND. Fantastic memories and fantastic people. MND won’t beat me! 

Please keep supporting MND awareness and the MND community. 

Enjoy life. 

To be continued…

Mark 

PS. As our thoughts and prayers turn to Paris and the people who’ve lost loved ones. Our Vinny was watching Sky news with me and I could see by his expression he was shocked at what had happened there. He’s 9 years of age so I felt the need to reassure him. I told him “There’s more good people in the world than bad, never forget that mate”

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Posted by: mads04 | November 10, 2015

Catch 22

We’ve all said at one time or another ” I can’t do right for doing wrong.” 

Well, MND should have that quote as its motto. Whatever you have to do to try and survive with this illness, MND it will find a way to fuck it up for you. For example, you have to eat a softer diet, ie pasta, noodles etc, because harder food such as meat or pizza are more difficult to chew, so you risk choking. You try food with lots of sauce on to make it easier to swallow, chunky soups are ideal. I have a spoon and fork with thick handles on so it’s easier for me to hold. I’ve also got the Charlie Drakes(shakes) so by the time I get a spoon full of soup to my mouth, most of its back in the bowl!. You’re a cruel mistress MND!! Catch 22! 

And whilst I’m on the subject of food. Any chance Dominos could stop sending me texts to tell me about their “Amazing new toppings” it’s doing my fuckin head in now! 

Now that winters here I have to stay warm, mainly to keep the flu and other viruses away but the downside of having a load of clothes on is that my arms are already weak and with the extra skins I can’t fuckin move at all. It’s like being in a straight jacket. Harry Houdini would struggle to get out of my coat! Catch 22

I need glasses to read now, mainly because I put eye drops on my tongue, yes you read it right. It’s to stop my saliva getting to excessive, the side affects off the eye drops dry my mouth. Another side effect off the eye drops is I get terrible blurred vision, so hence the glasses. I love reading and can turn a good book over in a couple of days but I can’t pick my glasses up and put them on. If I don’t have the eye drops in I’m like Sylvester the cat and without my glasses I’m like fuckin Mr Magoo!!. Catch 28! Shit, Mark put you’re glasses on!! Sorry, Catch 22.

I’m still walking, just, and I sometimes use my walking stick. Now it’s getting cold it’s hard to hold my stick because my hands get cold. Why don’t you just put a pair of gloves on dickhead? I hear you ask. Well when you’re fingers don’t work, it’s like trying to put gloves on a baby!! You’re thumb ends up with your index finger, you’re little finger is in bed with you’re ring finger which leaves my middle finger screaming at MND to fuck off.! Catch 22.

My head feels like a bowling ball most of the time because my neck muscles are deteriorating. When I’m tired it looks like I’m looking at the floor all the time. So I get a neck collar to keep my head up but to swallow with MND you have to do a manoeuvre called “Chin tuck” where you put you’re chin to you’re chest to make it easier to drink,eat and obviously swallow. Try doing a “chin tuck”with a fuckin collar on!! Catch 22

I can’t get a shower alone so I just have to sit under the water and let Jayne wash me. Washing my hair and body is the easy part, it’s when the razor comes out things get complicated. When Jayne shaves under my chin, I obviously have to put my neck back for easier access, but when I put my head back I risk getting cramps in my neck. When I get neck cramps I normally have to keep my head still for a couple of minutes and just ride it out,so to speak. I also sometimes go into the “chin tuck” because my neck just spasms. Now throw a razor blade into the mix and you’ve got a potential shower scene out of Psycho. Catch 22 

But other than all of that I’m flying!!!

My mate Ian Pratt who has had MND for 3 years and has campaigned ferociously to raise awareness and funds for the MND association without fuss. Ian now needs his family home adapting for easier wheelchair access. His friend and MND volunteer fundraiser Tony Bray has set a fundraising page up for him to help with costs. Ian Pratt Family – living with MND | Chuffed | Non-profit charity and social enterprise fundraising

https://t.co/Ikz4JzQwlP

Please share this link, Ian, his wife and young daughter need all the support they can get. Stay strong mate. MND Warrior 

I’m going to finish this blog by saying goodbye to a man who epitomised true human spirit. I met Eric Rivers and his fantastic family at the end of my first London marathon in 2013. Eric’s wife Davina had been in touch with me before the race and told me Eric wanted to come and meet me because he thought it was amazing I was doing a marathon with MND. This man and his family have done so much for people with MND. Eric’s words were humbling, Davina and their daughters strength inspiring. I could use many words to sum Eric up. Inspirational, courageous, brave, but I’ll use words that meant the most to Eric. Loving husband, loving father. No other words needed. RIP my mate, the honour was all mine, you will be sorely missed X MND Warrior X 

  

To all the MND Warriors out there, We never give up the fight.

Please keep supporting the MND community and MND awareness. It’s a shitty world especially when kids are involved. 

Enjoy life….

To be continued…

Mark 

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…

Mark 

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