They say charity begins at home….but mine is starting in the garage.

Just over a week before the Copperstate, so I’ll turn my attention to the other reason I’m taking part in this event; to raise awareness for a disease called ALS (Amyotrophic Lateral Sclerosis), or MND (Motor Neurone Disease).

Until 2002, MND was something I simply connected to Stephen Hawkings, without any real knowledge or understanding.  By the end of March that year, not only had my depth of knowledge changed exponentially, I was unfortunately on the way to becoming somewhat of an expert by default.  Following a visit to UCLA Stroke center with my mother, to try and resolve what seemed to be ongoing and ever-changing health problems for her; a terminal illness previously nothing more than a phrase only heard in passing on the news became a new, terrifying and unwelcome member of our family.

Motor Neurone Disease is rather like the bus joke… don’t know anyone who suffers from the disease, until it appears on the horizon at which point it’s almost immediately joined by numerous stories, none with good endings, of other patients.  MND, or ALS as it’s referred to in America, is terminal, and hits the patient and their family like a tsunami.  However, this wave doesn’t retreat as quickly as it reaches the beach; instead it just keeps coming……and every swell presents another aspect of the illness that is even more overwhelming than the previous one.

In layman’s terms, there are two types….top down or bottom up.  The overall progression is the same, as the brain stops communicating with the body’s muscle structure; resulting in a gradual wasting away of the muscles through under use.  However, “top down” is the more aggressive version; because speech, breathing and inevitably the heart are all impacted much sooner.  As with all terminal illnesses, there is a desperate need for a cure to be found, but sadly the success rate to date with MND/ALS has been agonizingly slow.  Unfortunately, this particular culprit is frighteningly smart…..possibly appearing initially as something benign, or imitating other symptoms; which just increases the complexity of diagnosis and reduces the time available to address or control the onset.  To further compound the situation, there is a hereditary version but the diagnosis may also be completely random, selecting each victim for reasons that have yet to be identified by the medical community.

England is lucky enough to have the remarkable charitable organization, MNDA….the Motor Neurone Disease Association.  They provide an extraordinary variety of support – from advocacy, social service intermediaries, equipment provision, general information, counseling…and the list goes on.  There is no charge for the service, and every person involved with this organization is dedicated to minimizing the pain inflicted on anyone taking, or affected by, the MND journey.

From a personal perspective, the Motor Neurone Disease Association is a huge shard of light, rather than just a small glimmer of hope, on the horizon.  There are so many aspects of this particular disease that make it more complicated than most to wrestle with, beyond just the symptoms and the progression.  Having a team able to provide additional expertise and understanding; giving information about the help we were entitled to regarding a house retrofit, providing our mother with the best possible and least intrusive care; answering every question that my sister & I had with compassion; these were gifts that we didn’t fully appreciate until we started to look back at the last thirteen months of our mother’s life.

So…to honour the memory of a wonderful woman; my mother, mentor & friend…I’ll be driving like the clappers, enjoying the scenery, remembering to stop and smell the flowers and thanking her at every corner for teaching me to enjoy every single day of my life.  I’ve also set up a charity page for donations that anyone may feel like giving to the Motor Neurone Disease Association.  Until there is a cure, I hope that the opportunity for future sufferers to be supported as unequivocally & generously as we were, continues.


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