Ataxia and Me

Walked.

Yes, past tense I’m afraid.

Since being diagnosed with spinocerebellar ataxia in March 2015, I have walked in many places, raising ataxia-awareness, and funds for Ataxia UK.

However, and entirely due to the progressive nature of ataxia , a wee tumble during my walk along the Canal du Midi in June 2017, signaled the end of my long-distance walking days.

So all walks will now be “virtual” walks – I know what I want to see, and what I want to show you (after all, vicarious travel is better than no travel at all).

Ataxia?

In late 2013, while I was midway through a “round-the-world-by-train” trip, I started to fall over for no obvious reason. So I returned home to Scotland, from Novosibirsk in Siberia, for medical tests.

In March 2015, after 17 months of scans, lumbar punctures and blood tests to find the cause, I was finally diagnosed with spinocerebellar ataxia. A very rare, incurable (and progressive), neurological condition which will eventually see me in a wheelchair. Or worse.

Ataxia, which comes in various disguises, affects around 1 person in 7,000 in the UK [so maybe I should buy a lottery ticket this weekend?].

And although all forms of ataxia are currently incurable, vital research is taking place all over the world.

But all of this research costs. And as we in the UK have decided that medical research should not be government-funded, research here relies on charitable donations made to Ataxia UK (the registered ataxia charity in the UK).

And that means people like me doing all sorts of fundraising events.

[True, a cure may come too late for me personally, but there is absolutely no reason why future generations (some of them just children) should also suffer from this condition].

So why was walking so important to me?

It was immediately apparent to me, that walking would be the next ability that I would lose. And I’ve always loved the outdoors. So, if I wanted to see some more, it was a case of “now or never”.

By “walking” while I was fundraising, I would be able to attract people’s attentions to the fact that ataxia affected a simple ability which we all take for granted.

So my decision was made. I would walk.

Between 2015 and 2017, I could still walk for long distances. Although I increasingly had to rely on my walking stick, mainly for balance.

So while walking at all was still an option, walking became rather important to me. Simply because I was well aware of the progressive nature of my ataxia, and that I wouldn’t always be able to walk.

What I didn’t know at that point was just how long I would still be able to walk over long distances. It could have been anywhere between 1 and 10 years (the effects of ataxia are known; however, the rate of progression is variable).

It turns out that I would walk long distances for another 2 years.

And, importantly, I would be raising ataxia awareness, and funds for ataxia research (via Ataxia UK), at the same time as stretching my legs.

Previous walks have taken me all over Europe, the longest of which was a 500-mile walk down the Mediterranean coast of Spain in 2016:

[a pictorial summary of my walk in Spain in just 38 photographs – Facebook only for now]

And why the kilt?

There are two real reasons.

1. The first of these is pretty simple. Publicity.

As my main aim, other than simply raising funds for Ataxia UK, is to raise general awareness of this condition, wearing a (rather photogenic) kilt generates so much more awareness than I could ever hope to raise simply by walking, and talking to the people I meet along the way.

And it works.

My walks have now also attracted the attention of the national media (well, here in Scotland).

And internationally too! Previous walks have been covered by the Italian press, and French TV!

2. The second reason is more personal.

Just prior to my diagnosis, I bought a rather attractive kilt to wear to a posh wedding near Loch Lomond.

So when the diagnosis was finally made in 2015, I had worn this kilt just once.

But proper kilts are not cheap though. And there was absolutely no way that I was spending so much money on something which I would wear just the once.

So it’s now a case of “any excuse, and the kilt is going on”!

The UK Hotel Network is no more!

I ran the UK Hotel Network, a glorified webring that enabled direct contact with some of the finest hotels and B&Bs in the UK, between 1999 and 2015.

However, when I was diagnosed with spinocerebellar ataxia in March 2015, I “sold up” – and put my walking boots on.

But now that I’ll be spending more time sitting down, I can at last use this previous web experience. But more about that later.

How can I follow your fundraising “walks”?

All walks (now virtual walks) are covered here, and on social media (Facebook and Twitter) at:

https://www.facebook.com/kiltedwalker/

https://www.twitter.com/kiltedwalker/

Can I donate directly to Ataxia UK?

Of course. You can donate here. 100% of your donation – plus an additional 25% paid by the UK government if you are a UK taxpayer (just tick the “GiftAid” box) is paid directly, and instantly, to Ataxia UK.

Ataxia UK can then immediately use your donation to help fund ataxia research. Without having to wait for me to complete my “walks”.

To donate directly to Ataxia UK:

https://www.ataxia.org.uk/fundraisers/the-global-walk-for-ataxia

Thank you all – for being part of my journey!

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