The Killer Diagnosis [MND]

January 19, 2019

I was diagnosed with Motor Neurone Disease just over a year ago.  Yes, it’s terminal.  The tragic news hit me at a most unexpected time in my life: I was on top of my game at work, with family life and my health.  Being told that I will have the same fate as Stephen Hawking, when I had everything to live for, was utterly devastating.  How could this have happened to me, to my family?  As an ex-decathlete, rugby player and nutritionist, I had always lived a healthy lifestyle which made it even harder to accept.

The chances of getting this incurable neurological disorder are one in 50,000, in any one year. These odds drastically reduce for those below the age of 40, which I was. So, the probability of me being diagnosed with MND were incredibly rare.  However, when you compare it to dying from HIV or from a pedestrian death which funnily enough have similar odds, it makes you reassess life in general. 

Being diagnosed was something I never thought we would go through.  It was one of the most difficult times of our lives: an emotional rollercoaster.  I was overwhelmed with all sorts of emotions: fear, anger, dread, and a deep sadness that I had never felt before.  For the first time, I got a taste of extreme anxiety for the future.  What would happen to me, my wife, my kids?  How would I cope?  How would they cope?  What would my decline be like?  How fast?  How would it all end?

Working through these thoughts and accepting the diagnosis was probably one of the biggest challenges I have faced.  It was a real struggle.  I was trying to deal with it as best I could but soon realised something needed to change.  I decided that I could either be owned by this cruel disease or take control and manage it.  Having gone through each of the natural stages to grief, I found the key was to move to the acceptance phase as soon as possible.  This journey will be different for everyone, but moving through it is the aim. Adaption is my new best friend!

Once you’ve accepted your fate, you can then face the future with confidence and move on with the new type of life you've been given.  Having been an athlete, making the most of the time I had left with a functioning body, with my family and friends around me was key.  I wanted to create unforgettable experiences that would stay with me and my family long after my body had failed.  And this intention had never been stronger.

Taking charge of my mental attitude literally saved me.  I knew I would need a great deal of fortitude to deal with MND, as would my family, so I started working on this.  Rather than consider the disease as a deadweight around my ankles, I now look at it as an opportunity to do something meaningful for myself and others.  It is a positive challenge which I plan to tackle head-on.

Setting up our new charity ‘Challenging MND’ has thrown me the lifeline I needed.  It allows me to put others first; those in more dire need than myself.  My dream is to establish this charity as a sustainable one whilst I am still able to.  Increasing awareness is very important to me. The average person in the street would not know much about MND or that typical prognosis rates are 2-3 years following diagnosis.  My aim is to help those diagnosed with MND to create memorable experiences that enrich their lives.

Research into new drugs and technology certainly has its place. I still think that we are years away from finding the answers.  My intention is to look after those in the unfortunate time trap of suffering with this disease.  By ensuring we provide memorable occasions or events with those closest we can help to relieve any heavy burden, and oh what a burden it is!!

The lessons I’ve learnt so far is that you never know what is around the corner. As such, you should enjoy the time you have as best you can.  MND will eventually defeat our bodies but it will not defeat our minds. Challenging MND will ensure that any memories we build will last forever.


Inspired by Alex’s story? Please get in touch if you have been diagnosed with MND yourself and are interested in completing a challenge. We also welcome enthusiastic volunteers and fundraisers to support our cause.

We are here to ensure every person throughout the UK diagnosed with MND is given the opportunity to create amazing memories with their family and friends which will last forever.
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Challenging MND is a registered charity in England and Wales (1182607)