Ataxia is an umbrella term for a group of rather rare progressive neurological conditions (affecting just 1 in 7,000 people in the UK).
Symptoms include loss of balance, loss of fine-motor muscle coordination, and speech/swallowing difficulties.
Ataxia can also lead to fatal complications (not always though: it is often more life limiting than life ending).
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, and are about her first diagnosis (when she was just 10 years old), and a later video which explains how ataxia affects her three years later – and at an age when young people are very conscious of how they appear to others:
There was a bit of Hope though
During my initial research of this “ataxia” thing, two separate cases stood out.
The first, was that of a young woman who, within a year of being diagnosed, was first in a wheelchair, and had then subsequently died.
And, rather alarmingly, she had been diagnosed with the same type of ataxia as myself. Spinocerebellar ataxia (ataxia comes in many different forms, and it affects different people very differently).
The second case, was that of Alan Thomas.
A Bittersweet Meeting
I met Alan in Barcelona in 2016. I was midway through the first stage of my 500-mile fundraising walking stick wander down the Mediterranean coast of Spain; and Alan was SPEAKING at an ataxia medical conference in Barcelona.
Meeting Alan was like looking at my very own future.
At the time, I was still just using a walking stick.
Alan was already using a wheelchair though. And, a symptom which would also arrive for me a few years later, he had a pretty profound speech impediment (which made the fact that he was now SPEAKING at ataxia medical/patient-supporting conferences, all the more impressive).
And, in news that was to give me much-needed hope for my own future, Alan explained that he was diagnosed in 1998!
EIGHTEEN years previously.
Yes, admittedly, he was using a wheelchair, and had pretty severe speech difficulties.
But he was very much alive and kicking.
And, more importantly perhaps, he wasn’t letting his disability prevent him from making a very positive contribution to the wheelchair-using community.
The Fundraising “Walking Stick Years”
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 reasonably well (although I increasingly had to rely on my walking stick, mainly for balance at that stage), I “walked”.
Raising ££££s (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/
All the time while wearing my rather fetching kilt (which I did to raise even more attention – and donations: both from the people who I talked to as I walked, and from the media – national and international).
My final “walk” was actually the highlight for me though. I was invited to participate with a group of celebrities (Jonnie Peacock, Adam Hills and a whole host of CBE/MBE-awarded paralympians and Invictus Games heroes) at the nPower-sponsored “Winter Wonderwheels” event in December 2017.
By 2018 my ataxia had progressed to the stage where I had to use a wheelchair to get around though. However, I still wanted to continue with fundraising/awareness-raising activities.
But “stay-at-home fundraising”? Difficult, but not impossible :
FareShare, MNDScotland and Whiteleys Retreat (where children diagnosed with cancer can enjoy some quality respite with their families).
Lockdown made things even harder, but “where there’s a will…..” (for FareShare again this time – I created a series of videos of Scottish landmarks, and then requested donations – a non-physical way to take part still):
Next then?
For everyone!
Although all DIY Walking Tours are step-free, they are aimed at everyone (as the things that make a route easier for myself, are the exact same things that make a route easier for you too). Plus, the most-popular visitor attractions in a city are visited in a specific order (to avoid backtracking), which saves your precious holiday time too.
All DIY Walking Tours just happen to be accessible to wheelchairs, prams and strollers too then.
Current cities include (this list is constantly expanding, so please check back):
Amsterdam (two DIY Walking Tours); Barcelona (three DIY Walking Tours); Bath; Bordeaux (two DIY Walking Tours); Brighton; Brussels; Dublin (two DIY Walking Tours); Edinburgh; Glasgow; Lille; London (four DIY Walking Tours); Madrid; Nîmes; Oxford and Paris (two DIY Walking Tours).
Allowing you to see more – with less effort. Leaving you more time and energy to actually enjoy your visit.
After all, travel should be fun!