A wee bit of history:
I was diagnosed with spinocerebellar ataxia in March 2015. Ataxia is, thankfully, a very rare neurological condition which affects communication between brain and body (it affects about 1 in 7,000 of us). The easiest way to describe it: it’s like MND in slow motion.
And it’s incurable.
Prior to 2015, I was the CEO of the, now defunct, UK Hotel Network. And had been since 1999. But when I was diagnosed, hotels were the last thing on my mind. All that I wanted to do was “walk”. Because I knew that walking was an ability that I would soon lose (running, cycling – and even dancing, were all abilities that I had already lost at that point).
The progression of my ataxia means that even simply walking while I fundraise is no longer an option now though (I now use a wheelchair).
When I was diagnosed in 2015, I was also told that ataxia was worse than just being incurable.
And I vividly remember asking the neurologist: “What could possibly be worse than incurable?”
It’s also progressive.
At that time, I was still walking (although with the help of a walking stick). But it was explained to me that even this would soon be a thing of the past for me. Eventually, I would need to use a wheelchair (which I now do unfortunately). And that the ultimate destination for me might even be a wooden box (hopefully, not for a while yet though!).
To try and explain this: It feels like standing in front of an oncoming train. You know that eventually it will hit you (and that the collision might even be fatal). But there is absolutely nothing that you can do to step out of the way. There is nothing that you, or anyone else (including medical professionals), can do to avoid the inevitable collision.
So knowing this in 2015, and subsequently learning that the medical research which hopes to find some sort of cure/treatment is totally reliant on funding from charitable organisations, I started fundraising.
I chose “walking” deliberately. To draw attention to the fact that an ability, and an ability that we all take for granted pretty much, would soon be lost to me forever due to the progressive nature of ataxia.
So get out there and smell the flowers today.
While I was “walking”, to raise even more awareness, I wore a kilt (which did seem to attract quite a lot of attention, and started thousands of conversations along the way). And a great deal of pretty major, and widespread, media coverage too.
I did all of this in the knowledge that any cure would probably come too late for me personally. But in the hope that there would be absolutely no need for anyone else to have to experience this in the future.
The “Walking” Years.
In 2016, I made my longest fundraising “walk”. A 500-mile trek down the Mediterranean coast of Spain.
And in 2017, I retraced the route that I had taken the year before (but using public transport this time), to personally thank all of the kind people who had housed and fed me while “walking” the year before.
And when I reached Barcelona, as I retraced the route, I met Alan Thomas (a fellow ataxia sufferer).
Meeting Alan was a bittersweet meeting for me.
Alan was diagnosed with ataxia some years ago, now uses a wheelchair, and his speech is severely affected. So it was like looking into my own future.
It was such a positive meeting though.
Alan is a rather inspirational character. He needs a wheelchair to go anywhere. And his ability to speak has been severely impacted by ataxia (his speech is profoundly slurred).
And yet, he travels the world giving SPEECHES at medical conferences, as an ataxia patient advocate. Which is why he was in Barcelona when I met him – he had flown there from his home in Wales, to attend a medical conference, acting as an ataxia patient advocate. Pretty inspiring stuff. You can follow Alan’s future travels, on Twitter, at @Ataxiaandme.
It was such a personal privilege, and honour, for me to meet Alan. And gave me so much hope for my own future. And the knowledge that ataxia didn’t mean no future, but just a different future.