Saturday 21 November 2015

Ambulant

Once again, I've been lucky enough to have someone else join me on my blog. Steve Davies is a friend of mine with Becker Muscular Dystrophy and wanted to join me in trying to explain some of the frustration behind being an ambulant disabled person...




Sunday 6 September 2015

With A Little Help From my Friends



I really like to be busy, not necessarily physically but most definitely, mentally.

On the 26th of September 2014, after recently finishing my 'Mile For Muscles' in Leeds I decided to go again and once again I would try to better what I had just conquered. I took to social media and decided that I would try to turn 'I' into 'We'. I was wondering if any of my friends would like to get on-board with an idea I had, which, in essence, seemed quite simple. Would you be able to join me and help me complete an ambition of mine and that was to be part of a Marathon.

It may seem strange to some that as my condition gets worse I have shown more interest in sports that involve just one person, distance or challenging environment. This might stem from my own challenges that I now face, I'm not sure but whatever it is I'm thoroughly enjoying it, the things humans put themselves through to prove a point, never give up and relish on the achievement.

So, back to that Friday night in September, some of you replied to my request that night and there was a theme, I was getting the same reply via Facebook, Twitter and text messages and yet some of you had no idea you were all saying the same thing; Count Me In! Our tag line was born and I was bombarded with it. Through the Autumn and early Winter of 2014 I was already visualising a Marathon in Aylesbury and even had some of the running order worked out already but then I had to think about reserve runners in-case life was life and people had to pull out. Also, I wanted a broad range of people involved,  the event had to be about inclusion, encouragement and fun. Talking about fun, I wanted to bring a musical element to the day too, so in January 2015 I met with old school friend, musician and music promoter, Paul Adams. Typical coffee shop meeting that over ran and ended up with us getting chucked out by our ear. As I was walking back to my car Paul closed the meeting by saying "Yeah, we could call our festival 'Music For Muscles', what do you think?" . That, my friend, fits like a glove.

 Once again as in the previous two years we immediately got support from Val and Gary, the landlady and landlord of our venue and the same from the Stoke Mandeville Stadium, who, once again, had an open arms attitude, so in that respect we were prepared early on.

I started to have more meetings with people to try to make sure they could visualise what I was trying to achieve and how help was imperative to me and others. People came in droves, I went to meet the Aylesbury united walking football team, A Marathon man and friends who wanted to cycle 26 miles and every one of them had their own element of competition to it. Mark Sammon was going to 'Race The Relay' and run his Marathon in a record time, Dean Murray and Wayne Martinig were persuaded by me after Bradley Wiggins took on his hour challenge, to cycle their 26.2 miles in under 90 Minutes, Hayley and Tommy Lloyd scooting round in Super Hero outfits. Then there was Graham and Hannah Cocker running around Stockport, Cheshire, training tied together at the ankle in preparation for the big day, no charity t-shirt, no sign of the fact they were entering into a charity event, no explanation whatsoever why they was tied together. That still makes me smile. That said, it's probably a good time to say what an effort people were making to be here and be part of this too. People were coming from all over England to be part of this and I do mean from all over, Cornwall, Cambridge, Cheshire, Lancashire, Cumbria, Warwickshire and our great friend, Jo from Yorkshire.

Over the last few months I was burning the candle at both ends and constantly staying in touch with people to make sure they were reassured and everything was still on and it was actually happening. So many people had put the date in their diaries very early on, it was becoming very overwhelming and by that I mean in a supportive, feeling loved, kind of way. 

Family friend, Marie Johnson started up our raffle and little did I know that it would be a massive contributor to our 'Just giving' page, in the end. As well as the board game invented by Sheralee which pretty much instantly raised a few hundred pounds, plus my mum's sweet game too! Thank you, Ladies. 

As we run up to our event I presented at my works town hall meeting and presented to all of my colleagues, it was one of the hardest things I've done. To stand in front of everyone you work with and tell them everything about yourself, I really did open my heart, it felt painful to say some words because I was talking about my own reality and a future I may face and then, at the end, I had to ask for help...

Turns out albeit petrifying, it was a good thing to do as all employee donations would be doubled. The last few weeks I took part in a few radio shows and pod casts and then that was it, it was upon us, Mile For Muscles - Count me In, was here.

30th August 2015.

Of all the days in the year, this was one where I did not want to wake up with any pain or issues with my legs and low and behold my legs where shaking from above the knee, downwards. I could not let anyone know, Michelle kept asking and I said I was fine. I was not bothered about anything else. Reserve runners were in place, bands ready to play, BBQ being stoked, raffle full to the brim and 26 groups of people, individual runners, two cyclists, one Marathon Man and one swimmer all chomping at the bit, despite the weather. Everyone was raring to go, to cover their mile and carry on cheering for the whole day.

At 11:00 it started, our eldest daughter, Lucie, set off with relay baton. Over the last few months I was compiling 'Participant profiles' to get some insight as to why people were getting involved with 'Mile For Muscles - Count Me in'. It was a chance for an introduction from everyone, to everyone else. I think they worked well and the day before the event Lucie explained in hers that she was a carrier of the Muscular Dystrophy gene. Lucie hardly ever talks about this and was another reason for me to be gratified and also why, as a family, we do what we do.

After Lucie quickly set off some of us jumped in the car to get to the stadium to witness the first baton exchange and to encourage and cheer everyone on. Lucie passed the baton to my future son-in-law, Nick and he was off like a rocket! As were the next few runners and it really was happening, what I had thought for a long time as a dream was coming true right before my eyes. I cannot take you through everyone's miles because I wasn't at both ends of the relay and also, I cannot talk from your perspective and I wouldn't want any credit for what you did. And actually that was part of the point. It was only on the day that I saw how much pride people were taking in 'their mile', enthusiastically grabbing it, shouting about it and taking ownership.

I think it was about mile 12 when it started to rain and it didn't stop. The relentless, fine rain that is well known to soak you through. You really wouldn't of known, no spirits were dampened. The runners kept coming along with the cheers and smiles, I was on cloud nine.

Towards the end I had a feeling of anxiety in my stomach, A mix of pride and nervousness. During this year Michelle started to run in the evenings and she was to be the penultimate mile, mile 25. I remember looking up the road and Michelle was running towards me with the baton and that was it for me, absolutely, totally, rewarded with pride and emotion.

I received the baton and a cuddle and I was off, I had to think of something to get me to the end, what could it be, think Martin! It was beer, I chose beer to get me to the end and it was very painful but it worked. All joking aside, it was also for a very special young man that was asleep beside me most of the way in a buggy and also other friends boys who I've spoke about this year. My mile was for Finley, Leo, Tommy and thousands more.

The reception we received was incredible and I am extremely proud of how all my family and friends celebrated everyone that took part. I'm not quite finished here... The last mile was also walked by my friend Steve Davies who has Beckers Muscular Dystrophy and how amazing that was to see. Someone equally as stubborn and determined as me making so much effort to complete this challenge and together, at the end, we laughed in the face of adversity and it felt bloody brilliant! This was the first time I had met Steve, we knew each other through mutual friends on social media and this event compounded not only this but many friendships.

Even now I'm still tired, both physically and mentally but it was worth it. Lastly, I set a target of £6000 on our 'Just Giving' page. This was because £5880 will pay for a full weeks research into Muscular Dystrophy, 168 hours of research paid for by our event. The total right now is £5622.97 and we have £1000 to go on from the owners of Phlexglobal. Needless to say, we smashed it!

As I said in my very own participant profile, I don't think I'll ever be able to thank all you very selfless people enough.


With all my heart, Thank You!




















Tuesday 21 July 2015

Sir Ludwig Guttmann

Ludwig Guttmann, the eldest child of the family, was born in Tost, within Upper Silesia, Germany (now Toszek, Poland) on 3 July 1899.
'Poppa' statue at Stoke Mandeville.


Guttmann first encountered a patient with a spinal cord injury in 1917, while he was volunteering at the Accident Hospital in Konigshutte. The patient was a coal miner who later died of sepsis. Guttmann started his medical studies in April 1918 at the University of Breslau. He transferred to the University of Freiburg in 1919 and received his Doctorate of Medicine in 1924.
By 1933, Guttmann was considered the top neurosurgeon in Germany. With the arrival of the Nazis in power, Jews were banned from practising medicine professionally and he was allowed to work only at the Jewish Hospital in Breslau, where he became director of the hospital. Following the violent attacks on Jewish people and properties during Kristallnacht on 9 November 1938, Guttmann ordered his staff to admit anyone without question. The following day he justified his decision on a case-by-case basis with the Gestapo. Out of 64 admissions, 60 patients were saved from arrest and deportation to concentration camps.
In early 1939, Guttmann and his family left Germany because of the Nazi persecution of the Jews. An opportunity for escape arose when the Nazis provided him with a visa and ordered him to travel to Portugal to treat a friend of the Portuguese dictator António de Oliveira Salazar.
In September 1943 the British government asked Dr Guttmann to establish the National Spinal Injuries Centre at Stoke Mandeville Hospital. When the centre opened on 1 February 1944, Guttmann was appointed its director (a position he held until 1946). As director of the UK's first specialist unit for treating spinal injuries, he believed that sport was a major method of therapy for injured military personnel helping them build up physical strength and self-respect.
Guttmann became a naturalised citizen of the United Kingdom in 1945. He organised the first Stoke Mandeville Games for disabled persons on 28 July 1948, the same day as the start of the London 1948 Summer Olympics. Dr Guttmann used the term paraplegic games for national games held in order to encourage his patients to take part. This came to be known as the "Paralympics," which only later became the "Parallel Games" and included other disabilities.
His vision of an international games the equivalent of the Olympic Games themselves was realized in 1960 when the International Stoke Mandeville Games were held alongside the official 1960 Summer Olympics in Rome. Known at the time as the 9th Annual International Stoke Mandeville Games, and organised under the aegis of the World Federation of Ex-servicemen (an International Working Group on Sport for the Disabled), they are now recognized as the first Paralympic Games.
As "Neurological Surgeon in charge of the Spinal Injuries Centre at the Ministry of Pensions Hospital, Stoke Mandeville", he was appointed Officer of the Order of the British Empire (OBE) in the 1950 King's Birthday Honours. On 28 June 1957, he was made an Associate Officer of the Venerable Order of Saint John.
He was promoted to Commander of the Order of the British Empire (CBE). In 1966, he was knighted by Queen Elizabeth II.

Guttmann gave many injured soldiers and disabled people a purpose in life, a selfless man who enhanced people’s lives when many had written them off, simply masking their pain with drugs rather than make the effort to rehabilitate.Introducing physiotherapy as a medical treatment and making others above realise how imperative that was. 
All of this and the ethos of inclusion and giving people that purpose in life is probably why I can get into a football stadium today, probably part of the reason we have equality law in the workplace, probably why you see ‘Positive About Disability’ at the bottom of most pieces of paper in any business, and he is definitely the reason we see the Paralympics every four years.
Ludwig Guttmann died on the 18th of March, 1980 in Aylesbury, Buckinghamshire, so much more than the neurologist he set out to be in his life. Even with his honours I still believe he’s an unsung hero, a global one at that.
On the 7th March 2014, BBC2 showed us the life of this great man, excellently played by Eddie Marsan in the entertaining drama 'The Best Of Men' and I implore you to go and look it up.
Far from delusions of grandeur of which he was accused, Guttmann didn't care for his own importance or well being, he cared for the importance and well being of others.
Thank you, Poppa.



(All dates confirmed, courtesy of Wiki)

Saturday 4 July 2015

On The Cusp of Something Great






I’m not sure why but this weekend feels like a half way point, for me. We’ve got 8 Weeks (!) until our ‘Mile for Muscles’ and yet I started to plan this in September last year. I have no reasoning for feeling like this but it feels good. 

As you’ve seen I have been asking people two questions and posted their participant profiles online. Who are you? Why are you taking part in mile for muscles? As I’ve said before now, these are entirely up to that individual and the answers are unedited (as you would have seen from Phil’s).

I’ve been so impressed with so many friends and family and I feel very humbled by some of the things that have been said. I just want people to know about these conditions and try to help a little, that’s all.
Michelle is now part of a running club and I couldn’t be prouder, as I said already, it doesn’t matter how slow she runs, she’s faster than the Michelle from one month ago. Our friend Marie started to text me last weekend to tell me that she wanted to organise a raffle and take all the hassle of it away from me. Marie posted about that on social media, said who and what it was for and had gifts at her feet within minutes. Paul Adams is cracking on with the music element for ‘Music for Muscles’ and Val, the landlady of the Aristocrat is always asking what she can do for us and if I’m ok with everything. My father-in-law, John, will be making sandwiches and more to keep everyone fed on the day and with all this I’m starting to feel a sense of unity. This really hit home with me after I posted a profile last weekend of my friend Hayley and Nathan Still put the comment ‘Welcome on board’, something so simple but kept me smiling for ages! I really enjoy seeing things like that. We are a team and everyone should be celebrated for what they are doing, that means now and on the day, so I second what Nathan said and I say it to all of you with gratitude and heartfelt thanks.

One thing I must put some emphasis on and forgot to last week was the fact that people are travelling to do this and not from just round the corner either. Last weekend I also did profiles on Gray and Jo. Gray will be coming from Lancashire to run his mile and Jo will be coming from West Yorkshire to run her mile, with family in tow too. I think that’s massive and I apologise for not mentioning it before now. 

Runners from all over the UK, incl the fantastic Jo!

Since doing these profiles I’ve had two people get in touch with me that wanted to raise the bar even more, to challenge themselves, to help us. Dean Murray was going to originally cycle a mile on his bike but has now decided to cycle the whole 26 miles and he also wants to try to do this in less than 90 minutes. I’m speaking to MD UK at this minute to get you a cycling shirt, Dean. Thank you!

You may also remember Mark Sammon who I introduced as one of our elite runners. Mark was moved by BBC newsnight this week which featured the story about Translarna, a drug which needs funding for boys with Duchenne. Mark commented on Facebook, “I watched this tonight and it really brings home the anguish of the parents – we must do more! I have an idea and I’ll message you about it tomorrow.”

Mark, The Marathon Man, with wife, Lou
Like Dean, Mark has challenged himself because he can (his own words), Mark has decided to run a marathon that day. Mark will run 26.2 miles as if he was in London doing it officially and as far as I know, nobody has ever run a marathon for charity in Aylesbury before. Also, Mark wants to add an element of fun and competitiveness to this, he would like to ‘Race the Relay’. Who will be fastest, us or Mark? 
All this information will be added to and adjusted on our team Just Giving page.

So we have a few more elements added to what I hope is a great day and people are really overwhelming me with support and care.

Mark will set off at 11:00 or 12:30 depending on the weather. My daughter, Lucie will start the relay at 12:00 and Dean will set off at 14:00, so we will all, hopefully, finish near the same time.

The hardest part of any charity event, for me, is asking people for donations and money. I must say this has been a little different; I’m arranging lots of different parts of this marathon and that’s great, busy but productive and full of positivity. The problem I have is actually walking but I’m told not to worry as we have a wheelbarrow ready to get me to the finish if needs must. I won’t let that happen.

I’m like the rest of you, I’m in training for a very special day and it bloody hurts. I am trying to walk the last mile of this marathon and it might not seem like much but it is when you can hardly walk at all. A great runner once said to me ‘A challenge is a challenge because it’s relative to that person’. If anyone could add any money or share our page and our story with others then that would be greatly appreciated. The target is set to what it is because that equates to one full week of research paid for by us and I think we can raise that much.

Imagine if a scientist had a 'eureka' moment and that was financed by something we did, together?

“Remember that day in 2015 when we raised that cash and funded that research, which found that treatment, fantastic wasn’t it!”

Thank you all, for everything. 



30/08/15

#MileForMuscles

#CountMeIn

TEXT:-  MMFM92 
             £5, £10, £20  (or any amount)
To:-       70070







Wednesday 3 June 2015

Give A Little Bit





The week commencing 1st June is National volunteer’s week, a time to celebrate the contribution made by millions of volunteers across the UK. I volunteer as much as I possibly can for Muscular Dystrophy UK, Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Seeing as I have a form of Muscular Dystrophy then this was the obvious choice for me.

Alongside my wife and daughters I attend events and just do my best to help and one of the highlights is the London Marathon. We are asked to help set up a cheer point, wear orange and shout lots. It’s not much but apparently it helps and is greatly appreciated. My younger brother is a runner too, so we usually have more than one reason to be there and more than one reason to feel rewarded ourselves. The reason I mention about being rewarded is because that’s exactly what it is. Over 100 runners take part in the Marathon for Muscular Dystrophy UK and they have trained all year and raised thousands of pounds for research to find treatments for these conditions. Standing on a London street and shouting at runners for four or five hours for someone who could potentially contribute towards a treatment is the least I can do.
I was talking about this with a friend and colleague who also took part in the marathon but for a completely different cause. I asked my friend; Karen if she could tell me what it meant to be supported by volunteers, how it made her feel etc…  

“Seeing the wall of orange Muscular Dystrophy supporters at the entrance to Tower Bridge was one of the main highlights of my London Marathon.  The almighty cheer of support that erupted as I ran past was the loudest of the day and (whether they knew me or not) everyone shouted my name along with genuine cheers of encouragement.  The buzz I got from it was amazing; it lifted me up, and without a doubt carried me through the rest of the run.”

There you go, another reason why we do these things and I have been thinking about my reasoning for doing these things quite a lot and reasons to volunteer far out weigh the reasons not to do it. It doesn’t cost me anything, I’m going to London anyway, it’s a glorious day out and you certainly feel like you’re part of something. It is a massively positive thing to do and helps so many people that are trying to help others. It doesn’t matter who runs past and for what charity, they can rest assured that they will be cheered on by us, being loud is something we’re very proud of.

So it’s in this very special week then that I’ll throw down the gauntlet and urge everyone to get involved going forward. It doesn’t matter if it’s a national charity or a small community project; there are people out there that need our help and we can all do that. A few minutes or hours of your time could make a world of difference and trust me when I say that you will feel a sense of achievement at the end too.

Pick one, just give a little bit, choose something close to your heart and go and help, whether it’s an animal welfare charity, children’s charity a local community project or indeed Muscular Dystrophy UK, just offer yourself up to do something good and naturally, without thinking,  you’ll do it with a smile because that’s what volunteering does to you. 

Our Olivia at this years London Marathon

Friday 15 May 2015

The Riffs




I’m not sure where or how it started but I know it was in the early eighties at some point that I became obsessed with Reggae and SKA. Many things could have been the catalyst; Gregory Isaacs Night nurse album on my cassette player; finding and purchasing a vinyl copy of ‘The harder they come’ at a middle school fete, was it the hand-me-down singles of the fluctuating two tone era, or indeed the release of ‘Legend’ by the late and great Bob Marley? Whatever it was, it gripped me and has since been my genre, my forte when it comes to music ever since.


So it’s very fitting that the first ever interview with a band that I do is with people that do exactly what I love and it wasn’t easy for me because the distractions of the bands sound check were fantastic and I just could not dismiss them.


The Riffs will be our headline act at ‘Music For Muscles’ on 30th August this year and last Friday I caught up with them to find out why they consider it important and the significance. It’s about 21:00 and I’m talking with Greg Tilley; the bands manager. The Riffs first gig was on March 26th 1989 in the new Pegasus public house, 73 Green Lanes, Stoke Newington supporting, The Loafers. The band members have changed a few times but the music remains the same and it’s great. Like me, Greg reminisces about listening to two tone and reggae that was around in the eighties, and with that came the curiosity to go backwards and find out the origins of this great sound. As we’re talking, in the background I can hear ‘red, red wine’ being sung by Tony Tribe, which is exactly the sort of original that we were both referring to.


I was chatting with the entire band whilst a sound check was under way and it was very clear and apparent that these people were listening to the same things as me growing up and influenced in the same way except one big difference, they got up and learnt to play an instrument or stood in front of a microphone and sang.


During the 70’s and 80’s there were changes in this branch of the musical tree. SKA was original, the precursor for Reggae but pioneers like Island record’s; Chris Blackwell began to champion the genre and make records that were more popular with the mainstream British and American market. Some might say Reggae had been diluted to become acceptable but Blackwell had achieved what he had set out to do and that was put more Jamaican records and artist under our coffee tables and onto our 45 players, having mixed it to sound more Pop and Rock and to therefore make it more acceptable to a global audience.


With that, like anything, there will be contingents that go back to originality and strip it back down again; with attitude too. The likes of ‘The clash’ covering Junior Marvin’s ‘Police and Thieves’ and Stiff little fingers covering Marley’s ‘Johnny was’ , more rebel music, two genre’s of music that went hand in hand. So with all this influence and people like Blackwell making this music easily available it is no wonder that we had a big rise in SKA, Reggae and Two Tone.


This is why we have bands like The Riffs, a passion to play what they love and believe. Not forgetting of course how much fun SKA is. You cannot beat that beat, the sort that will make you bounce to the bar rather than walk. These sounds that will make you smile from ear to ear. That’s why I’m here listening to one of my favourite local bands because all that’s gone before is played out on a Friday night in front of me and its ace!  A combination of the melodic sounds of reggae, the hard working, Trojan like punch of SKA with a little touch of punk attitude.


The Riffs are not a covers band; they play some great, original stuff including a ode to Mac the Sax, A former Saxophone player for the band that unfortunately, passed away too soon. The song opens with Spenny (Lead vocals) singing from Mac’s perspective and asks “enough about me, let’s talk about you” which tells you a lot about the ethos of that man and indeed the band as a whole.


It’s that selfless attitude that puts me here in the first place and leads me right back to the start of this, giving me the opportunity to explain why this band will be our headline act at our unique event in August.


On 1st September last year I had just finished my challenge to raise awareness and funds for Muscular Dystrophy UK, this being a condition that I have. I immediately needed a new project because this is what keeps me busy and is my tonic. So I had this idea to have a physical sporting event during the day and then a music event in the evening. Until now I haven’t explained that I have known Joel, the riffs saxophone player for some years now and it was as I’d finished last year’s challenge that Joel told me his son, Finley had been diagnosed with SMA (spinal muscular atrophy), another form of Muscular Dystrophy.


As I mentioned, I spent most of the evening talking to Greg about the band and his words were the same as my thoughts. We must do this; we need to raise funds for research for treatments and another important factor is to make sure our friend knows that we are there for him too. Any diagnosis of any condition can make you feel very lonely and personally I think that’s criminal. I thought the least we can do is help with that and show some loyalty and solidarity through tough times.


As for the distractions and the things that made this hard well they’re back as I try to wrap this up and conclude. The band finishes the sound check with a fantastic version of Johnny Too bad, by the slickers. Like I said, you’ll smile from ear to ear.


Thank you Greg (Management), Spenny (guitar, vocals), Steve (keyboards), Duane (Bass), Clemmy (Drums), and Joel (Saxophone and Friend)

The Riffs

 


Music For Muscles - Catch The Riffs playing at the Aristocrat, Aylesbury, 30th August 2015.




You can join us on facebook here.

Visit The Riffs website here. 


"One good thing about music, when it hits you, you feel no pain" 

- Marley.