Ataxia and Me

October 2013. During a “round-the-world by train” journey, I started falling over for no apparent reason. My balance became so bad that I abandoned the journey mid-way (in Novosibirsk, Siberia) and returned to Scotland to find out what was causing the problem.

March 2015. After 17 months of being poked and prodded by numerous different doctors and neurologists, I was finally diagnosed as having spinocerebellar ataxia. A very rare, incurable (and progressive), neurological condition which would eventually see me in a wheelchair (it now has). Or worse.

“Ataxia” was completely new to me. Which shouldn’t really have surprised me though, as I subsequently found out that I was not alone in my ignorance: 91% of the UK population have never heard of it either.

I know all about it now though!

I also discovered that a specific type of ataxia (Friedreich’s Ataxia) also affects children/young people too though. Children and young people who will never have the chance to see some of the things that I have been fortunate enough to see, or who will never have the chance to experience some of the things I have been lucky enough to do.

For a visual explanation of the affects of ataxia, please watch the following two videos (the first of which was my very first introduction to this thing called “ataxia” after my diagnosis in 2015). Both videos feature an amazingly brave young girl called Millie-Mae Enderby, and are about her first diagnosis (when she was just 10 years old), and a later video which explains how ataxia affects her, and other teenagers, at an age when young people are very conscious of how they appear to others:

And, rather sadly, I also learned that the medical research which aims to find a cure for this condition, and which is currently being done in a variety of medical laboratories across the planet, is reliant on charity for its continued funding.

So, to do my bit, and to raise some of the money needed, I started “walking”.

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

Raising £1,100, and immeasurable amounts of ataxia-awareness, at the same time.

The longest of these walks was a 500-mile trek down the Mediterranean coast of Spain in 2016. All previous walks:

https://ataxia.scot/previous-fundraising-walks/

And all the time while wearing my rather fetching kilt (which I did to raise even more publicity: both from the people who I talked to as I walked, and from the media – national and international).

And, again, this too has been rather successful:

https://ataxia.scot/kilted-walker-in-the-media/

My final “walk” was actually the highlight for me though. I was invited to participate with the celebrities (Jonnie Peacock, Adam Hills and a whole host of CBE/MBE-awarded paralympians and Invictus Games competitors) at the nPower-sponsored “Winter Wonderwheels” event in December:

https://ataxia.scot/2017/12/11/winter-wonderwheels-2017-what-a-day/

But my ataxia has now progressed to the stage where long-distance walking is no longer possible for me (even short distances are now a problem – even with the help of a walking stick). However, I would still like to continue my ataxia fundraising/awareness-raising activities.

So, sharing photographs of others fundraising, while having so much fun, it is:

#charityselfies

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