Some rather sad news.
I have Progressive Bulbar Palsy form of Motor Neuron Disease (MND) .
I was diagnosed on May 1st and a subsequent independent 2nd opinion on May 24th confirmed the initial diagnosis.
In the brief time Sophia and I have had to educate ourselves about this disease (clearly she already knew more than I did !), we have learnt that there is no known established cause for its onset, there is no cure, and currently there is only one medical treatment available which at best prolongs life by a few months.
The disease progressively degenerates the muscles in the body, resulting in a mostly sentient mind (there are about 15% of cases that also suffer a form of dementia) encased in a body that ultimately cannot move, speak, eat, or breathe without intervention .
Initially, there seemed to be little point in contemplating any future as an MND sufferer, or so I thought.
In our research, Sophia came across the following charity (https://www.myname5doddie.co.uk ) whose uncomplicated motives have inspired me to a calm acceptance of my reality, and to action while I can.
An international rugby legend, Doddie Weir’s achievements on the pitch for club, country, and British and Irish Lions are well known to even casual rugby fans.
As a MND sufferer, his aim is to raise as much money as possible to fund research into helping to find a cure, in addition to providing grants to MND sufferers and their families to enable them to live as fulfilled a life as possible.
We have decided to attempt a Land's End to London bike ride for Doddie's charity.
We will start on Friday June 21st (Global MND Awareness Day and ironically also my birthday) with my two brothers, Mark and Paul, and my son Freddie.
We will be joined by friends and family en route http://www.kctw.co.uk/landsendlondon and you are very welcome to get on your bike on Saturday June 29th and join us on the final leg, or meet us along the way from Windsor to Highgate in North London, where we will have a few drinks on completion (I hope!) of the ride.
Despite being devoted Irish rugby fans, we will wear Doddie Tartan on the bikes with pride, in the hope of raising as much money as we can, and perhaps raise a little more awareness of this disease as we dine each evening in full Tartan suits.
I imagine we will make a few new friends along the way!
With friendship in mind, I humbly urge you to give more than you are normally comfortable with giving, so that this amazing charity can continue to provide those affected with as dignified a life as possible, while research continues into finding a cure.
I ask not for your sympathy, as the love of my wonderful family will see me through what awaits.
I ask for your money please, so that public figures such as Doddie Weir can continue to make a real difference to those living with MND in the UK today.
Thank you from the bottom of my heart.