Tuesday, February 11, 2014

Limb-Girdle Muscular Dystrophy Martin Hywood's Story

When it comes to sharing my story it has led to many opportunities to connect with others around the world whose lives have also been affected by Muscular Dystrophy. This would include those living with Duchenne, FSH-MD, CMT and thanks to Martin Limb-Girdle Muscular Dystrophy. Again as the My Becker's Story blog enters its fifth year it is my plan to raise awareness about the many different forms of MD by inviting others to share their personal stories. Recently I asked a good friend of mine Martin who is living with Limb-Girdle Muscular Dystrophy to share a little bit about his story. After reading his blog post myself I have come to understand that some of the issues we face are not that different. The hope with this blog post is to show the world that we are truly in this "Together"

Limb-Girdle Muscular Dystrophy - Martin Hywood's story
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. II 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.

The limb-girdle group of muscular dystrophies is so called because generally they cause weakness in the shoulder and pelvic girdle, for example the big muscles around the top (proximal) part of arms and legs (hip, thigh and shoulder muscles). Usually weakness of the legs is noticed before that of the arms.

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 consultants 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 Simons 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.

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.  
Martin Hywood


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