Positive Mental Gratitude.

Off road testing a powerchair with a

difference, Thank you Ian...

Mile For Muscles 2014.

On the 25th August 2013 living with Limb Girdle Muscular Dystrophy I walked a 'Mile for Muscles' for The Muscular Dystrophy Campaign.

This year I plan to do it again, Bigger and Better!

Living with Limb-girdle Muscular Dystrophy.

So I’m sat here, watching the rain hit the window and seeing the bead of water race down the pane engulfing other drops as it goes speeding up until it gets to the bottom and disappears. Slowly I hear an increase in volume. I realise that I’m being spoken to. I’m sat in a consultant neurologist’s office in a very cold and wet Oxfordshire. I’ve just been diagnosed with limb girdle Muscular Dystrophy and I’m devastated. My whole life just changed. I’m surrounded by my whole family, yet this is the loneliest I’ve ever felt in my life.

On this day my older brother, Simon, is also diagnosed with the same condition. All that he goes through I will see, with every expectation that my body will do the same thing. Simon was diagnosed on the same day, but his condition is progressing more rapidly. I will see one of my best friends slowly but surely rely on walking sticks and become very slow in all movement. I will mostly feel burning and feelings of paralysis in my legs, constant nerve pain across my shoulders, neck. I will be tired each day by 16:00. 

Now before anyone thinks this is all very melodramatic and may sound exaggerated, it isn’t. This is how it is, But people hear worse things in consultant’s rooms in hospitals all over the world and it doesn’t take too long before I actually feel grateful that the diagnosis was this and nothing worse.

Also to tell you a little more about I and Simon’s relationship, it is as close as two brothers could be.

Simon would be the one who took me to the cinema with friends as soon as he’d passed his driving test, rather than leave me behind. He’d pick me to play football knowing very well that I was useless. We would prank each other at every opportunity, something we have always done. There are four brothers in our family and one sister and we were, and still are, little terrors!

Our condition has not changed the dynamics of our relationship at all. As soon as we were diagnosed and at this time we had three dogs in the family, two boxers and Simon’s very own Rhodesian Ridgeback. Now I decided to encourage one of the boxers to steal Simons walking stick on demand, chew it or hide it, leaving him stranded, absolutely stuck. With this came a reaction and Simon simply trained his dog to chase me and pin me down on demand to the point when one day I fell down a flight of stairs with this Ridgeback stood over me.

It’s always been this way and I can imagine it always will be. Just recently Simon called me to ask if I was going out that evening and I tried to explain that I couldn’t because the night before I had stood up, lost my balance, fell down and landed on our coffee table which was covered in glasses. Not anymore! As I said, I was trying to explain this in a phone conversation which ended up with Simon hanging up due to laughing so much to the point of tears. He truly is a great brother.

So it’s a horrible thing but we deal with it the best way we can and most of the time that is to laugh in its face (and each others!)

What’s happened since the diagnosis 17 years ago? 

Well I’ve surprised myself and lots around me by still being able to walk unaided and we’ve gone on to raise awareness about the condition, raised vital funds and we’re trying our best to let others know about the other strains of Muscular Dystrophy. As our Marathon running other brother, Andrew says, we are very lucky to have each other around to help if needs must.

 

Myself, Simon and Andrew.

So there you are, that’s how we deal with it. It may not be orthodox or how some others may deal with their siblings but that’s just who we are. Disabled or not, you should still be able to laugh at each other AND most importantly with each other.

17 years ago, I knew nothing about Muscular Dystrophy, today I work in Pharmaceutical I.T. processing paperwork to do with Muscular Dystrophy clinical studies and I’m only a few days away from becoming an Advocacy Ambassador for the Muscular Dystrophy Campaign in the U.K. 

You can follow me @HywoodMartin , ‘My beckers story’ @MyBeckersStory and the Muscular Dystrophy Campaign @TargetMD on twitter.

Make Today Count.

On the weekend of Friday 28th Feb, over three days, 145 thrillseekers would skydive over 10,000 feet for the Muscular Dystrophy Campaign.

My daughter, Lucie and her partners father, Tim, were two of those people.

Phlexglobal

Resolutions and Solutions.

The New Year brings new challenges and this, for me, coincides with my resolution to continue to walk unaided.

"Every day is a battle and every day I win! "

It is becoming increasingly difficult for me to walk, stand and manoeuvre myself. Being a realist I appreciate that in the near future things will change and that's fine, I'll be ready. A big part of dealing with a progressive condition is preparation and organisation, and that is what I and my wife have set out to do in 2014.

National Powerchair Football Week.

November 23rd saw the start of National Powerchair Football Week, now I must admit I was slow on the uptake with this. That surprises me... A lot!

It surprises me for two reasons. The first being my love of football and absolutely everything about it, in every respect.

Secondly because I'm a realist, I know my body’s destiny. I live with Limb GirdleMuscular Dystrophy, a progressive condition that deteriorates my muscles and the ability to use them. This isn’t to sound bleak; It’s just that I find it easier to adjust things in early stages rather than be overcome by a physical change.

With that in my mind, over a very short period of time I realised that powerchair football could be an opportunity for me. I decided to enquire about the game and pondered going to a local team and trying to get an insight into it and its heritage.

It didn't quite work out that way.

I tweeted the governing body (WFA) asking where my local club is and immediately got a response with a very helpful link to ALL the clubs in England. I then decided to get in touch with Alun Watson, player/manager of the MK Dons SET FC, Milton Keynes’ powerchair football club. Alun was extremely accommodating and replied with “fancy having a go Martin? Get down here Saturday and we’ll have a chair ready for you”

This was a bit of a shock to me, like I mentioned earlier, I have a progressive condition and at the minute I do not rely on a powerchair to get about. I’m still able to walk (just) and the idea of getting in a chair, for me, was a bit daunting. Within five minutes of arriving in Milton Keynes Alun had me in a chair and my 7 year daughter, Olivia was watching from the side-lines.

I thought it was important that Olivia came along too as she has a massive interest in all sports, especially football. She has been watching football from a young age and I wanted her opinion afterwards. I don’t need to tell you how brutally honest children can be! 

So here we are, myself and about 11 other people in a sports hall in powerchairs. In at the deep end! Firstly Alun gets me used to the chair and asks me to run the line to get used to speed and movement. These things have five speeds and they are rapid! Then when I was used to that, Alun had me slaloming through some cones and told me that soon we would introduce a ball.

I must also add that whilst all this was going on Alun was explaining rules and also telling stories of some the players and their playing traits. The players were a vast array of ages and totally different conditions. Alun, like me, has LGMD and also has a massive interest in the beautiful game. (It’s quite easy to see how we immediately clicked.) He goes on to tell me about one of the players called Ross. Ross is 17 years old and has Duchenne Muscular Dystrophy and it’s at this point that Ross’s mum (Marie) comes over to where I’m practising. I start to ask her about the sport and what Ross thinks of it. “It’s fantastic and has changed Ross’s life; he looks forward to it all week, every week” Music to my ears!

So training is done and apparently I’m ready to get involved with a game! 

Its 4-a-side and we have 20 minutes left, I simply cannot explain how this feels, I’m on a pitch and I’m in a team… playing football, I haven’t done this for 22years! Initially I’m riddled with frustration, I cannot operate the chair fast enough and with the precision I desire. 

Then near the end I pick up the ball in front of what I call the ‘Bull bars’, big bumper things at front of the chair that help gain control and protect the chair/occupant. I’m in my own half and all that’s in front of me is the opposition so I go straight to make my way

Myself,Ross and the main man Alun.

through the players and (luckily) everything is going my way, controlling the ball past others with a lucky deflection of an opposing player back to me and I can see the goal now, Surely not! I keep going and with what feels like a slight right turn I score a goal! 1-0!!! 

We went on to win 2-0.

Again, this is simply indescribable, It feels exactly the same as being 17 years old and scoring on grass, anyone who has ever scored ANY goal will know that feeling, Immense!

At the end we pack everything away and I cannot thank Alun and the team enough. It was simply fantastic and Alun is a credit to the game, a very good ambassador.

Will I go back and do it again? Without a doubt, I wish I’d have heard about it sooner.

To finish I would like to tell you about what I consider the best bit… As we got in the car Olivia said “Daddy I’ve never seen you play football until today and the first time I saw you, you scored and that made me proud in my heart and made my belly feel funny” … I did warn you about how brutally honest children can be and that just made my year!

If you’d like to get involved then get in touch with the WFA here… http://www.thewfa.org.uk/

I highly recommend it!