Iain McGeachin In late 2013, while I was midway through a “round-the-world-by-train” trip, I started to fall over for no obvious reason. I had reached Novosibirsk in Siberia (on the famed Trans-Siberian Express), when I decided that it might be wise to abandon the journey there and then, and return home to Scotland 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.

And because it is progressive, I know exactly which ability I will lose next. And that there is nothing that I, or anyone else, can do to halt this progression. To use a train analogy: it feels like standing in front of a moving train and you know that the impact is coming, and that it won't be nice, but there is absolutely no way to avoid the collision.

Luckily though, ataxia, which comes in various disguises, only affects around 1 person in 7,000 in the UK. 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 this medical research should not be government-funded, much of the research here relies on charitable donations made to Ataxia UK.

Who, in turn, rely on people like me taking part in all manner of fundraising events.

So, to do my bit, and while I still could, and to highlight the fact that walking, an everyday ability that we take for granted, would soon be impossible for me, I decided to raise funds .

By walking!

True, a cure may come too late for me personally, but there is absolutely no reason why future generations 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”.

The abilities that will be lost as ataxia progresses are well-known to neurologists though. What is unknown, and is completely different in each case, is the RATE of that progression (I know a guy, who I met through the ataxia charity, who was diagnosed over ten years ago, and other than him using some form of walking aid, you would be hard-pushed to know that anything was wrong. I also heard about a girl though, who was in a wheelchair within a year of being diagnosed, and died from complications some years later and, rather worryingly, she had an identical diagnosis to myself. So I have always gone on the basis of expecting the worst to happen, but secretly hoping for the best outcome).

It has turned out that I still had two-plus years of long-distance walking left in me (now though, even shorter distances are becoming more bothersome).

But there was also a medical reason for my decision to walk.

On its own, ataxia is not always fatal (although it causes other problems - usually heart-related - which can be). In my case though, it is likely to be my chest which causes problems (due to my childhood asthma - where my lungs didn't develop as they should, and my lung-capacity is reduced as a result). Which is why I chose to "walk". All through my life I have swam/cycled/run just to keep my lungs functioning well. Now though, I can't do any of these things. And my breathing is suffering as a result. So it was on my own GP's orders that I started walking. He asked me what I could still do. And when he learned that walking was still a possibility, he advised me to walk as far, and as fast, as possible (I don't think he meant just as far though - last year I walked five hundred miles down the Mediterranean coast of Spain).

There was an "awareness-raising" aspect to my decision to walk too. As I planned to walk anyway, I decided to do so - while wearing a kilt!

Between 2015 and 2017, I could still walk for long distances (although I increasingly had to rely on my walking stick, mainly for balance at that stage).

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 long distances for. It could have been anywhere between 1 and 10 years.

It turns out that I would be able to 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.

These walks took me all over Europe, the longest of which was that 500-mile walk down the Mediterranean coast of Spain in 2016.

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 starts a million conversations. I also always wear an "ataxia" t-shirt with my kilt. And I have become rather good at redirecting conversations from my kilt (which usually always starts the conversation) to my t-shirt. And to ataxia.

But as well as generating interest among the people who I talk to while walking, my kilt has also attracted the attention of the established media (both press & TV). And rather successfully too. This media-coverage 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. So I am *always* seeking media attention wherever I "walk".

And it works.

My walks have now 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 for wearing a kilt is more personal though:

Just prior to my ataxia 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”.

And now?

Now that long-distance walking is no longer possible for me (even shorter distances are now becoming a problem), I will no longer "walk" to raise funds/awareness.

But this is most definitely not the end of my ataxia fundraising/awareness-raising activities. Just the “walking” part.

Future activities are likely to be similar to my recent participation in the inaugural "Winter Wonderwheels":

While I was abroad recently, I received an invitation to take part in the "celebrity relay" at this year's "Winter Wonderwheels" (a disabled sporting event, sponsored by nPower and Barclays, which took place at Dorney Lake near Windsor at the start of December). The celebrity relay comprised of about a dozen four-man teams, with each team being captained by a celebrity in the field of disabled sports in the UK. My four-man team was captained by Susie Rodgers MBE (Susie won a gold medal in the Paralympics at Rio 2016). The other teams were captained by Jonnie Peacock (probably the most well-known disabled guy in the UK at the moment, thanks to his Strictly efforts), Adam Hills (the Australian compere of The Last Leg on Channel 4), and a whole host of MBEs/CBE-awarded Paralympians and Invictus Games heroes.

As it turned out, this was to be the last of my "walking" events - so I ended on the highest of high notes.

As mentioned above, when I first started to fall over in 2013, I was in the middle of a "round the world by train" trip. This was one of those "once in a lifetime" trips. And one that I had spent 18-months researching (18 months spent poring over train route maps & timetables - you see, I didn't want to travel on just any old train - but the highest/longest/most-iconic trains on the planet).


It has always been my ultimate aim to complete this journey. Only this time as yet another ataxia fundraising/awareness-raising event too (I have already done all of the research anyway, and it would be daft not to use it if possible).

My plan all along though (well, for the last few years anyway), was to do this trip when I was finally in a wheelchair, as rail travel involves a lot of sitting down anyway (and a "round the world by train - in a wheelchair" event would raise even more interest).

But I'm not feeling as confident in my ability to do so now. Because as well as losing the ability to walk, I can also expect to have problems talking/swallowing (caused by a weakening of my throat muscles). Abilities that I will need when travelling anywhere. And I have just noticed what could be the beginning of this happening (choking problems - although only minor problems at the moment, and always when drinking cold water).

So I now plan to complete the journey as soon as I have saved enough pennies (September 25 is the target, to tie in with International Ataxia Awareness Day).

And, hopefully, add a tidy sum to the funds raised so far.

So watch this space.

Iain Iain McGeachin