Ataxia and Me



In late 2013, I started to fall over for no obvious reason.

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 here at home).

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 is walking now so important?

For the time being, I can still walk (ish). Although I increasingly have to rely on my walking stick these days.

So while walking at all is still an option, walking has become rather important to me. So walking is what I now do. 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, culminating in a 500-mile walk along the Mediterranean coast of Spain in 2016 (my longest walk at that point):

[a pictorial summary in just 38 photographs of my walk in Spain – 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, following 17 months of pretty exhaustive (and exhausting?) medical tests, I had worn this kilt just once.

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, in March 2015 I was diagnosed with spinocerebellar ataxia, a very rare (thankfully), incurable, and progressive, neurological condition which will eventually put me in a wheelchair. Or worse.

So I “sold up” – and put my walking boots on 🙂

How can I follow your fundraising “walks”?

All walks are covered here (I take lots of photographs as I go, which I share in “realtime”).

These photographs are also shared on social media (Facebook and Twitter) at:

How can I help fund your future fundraising “walks”?

These walks cost.

Accommodation is usually free (via the “couchsurfing” community – complete strangers who give me a bed for the night, in the comfort of their very own homes). However, other expenses (like food and drink, transport and travel insurance), are self-financed.

And as every penny saved is another penny that goes to Ataxia UK, I spend as little as possible during these walks.

And where spending is unavoidable, I seek donations of every single item that I need to survive. And in exchange, the people/companies who support my walks are publicly thanked (both here, and on my social media channels – which now attract well over 30,000 followers).

Yes, I do all of the “walking”. But it is my kind and very generous supporters who make these walks possible in the first place:

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:

Thank you all – for being part of my journey!

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