Enjoy the ride, savour the moment & always ride on! - Ataxia UK

Enjoy the ride, savour the moment & always ride on!

Post Published: May 10, 2023

Calum O’Neill, a 25-year-old para-cyclist with ataxia from East London, is training extremely hard for the Great Britain Cycling Team. Calum kindly agreed to share his inspiring paracycling journey…

Can you tell us a little bit about yourself and your ataxia journey?

When I was 18 months old, I became unwell and as part of this I started to develop strange eye movements called nystagmus. It turned out this was a precursor to my immune system turning on me and attacking me instead of protecting me. I was admitted to Great Ormond Street Hospital as an emergency admission. Within days my parents were told I had a condition called Dancing Eye Syndrome (Opsoclonus myoclonus) and consequently developed associated learning difficulties and dyspraxia. As a result of this I was late to talk and walk but I did not have another episode of dancing eye syndrome and steadily made improvements. I attended a mainstream school until I was 7 and then my learning difficulties needed further support and I was told I also had dyscalculia. School was always difficult, but I did my best and passed as many qualifications as I could within a supported environment, finishing up with a personal trainer qualification

As I gradually worked my way through rugby-not physically strong enough, running wore out my ankles, swimming? – I drank most of the pool! But cycling has always been there, even though I was beginning to notice I bumped into people in crowds, and I was a bit off balance. 2020 was the year I really noticed a problem with my walking and could not walk in a straight line. To compound the problem, I encountered problems riding a two-wheeled bicycle. My parents having seen me have spectacular falls at home for no reason, urged me to seek medical advice, when I was 22. After thorough investigations I am under the care of Queens Square Neurological Team and I was diagnosed with Ataxia, tests are still ongoing to determine what type and effect it could have later in life.

Currently I have poor hand and balance skills, standing for long periods of time and walking are difficult for me, and I still have falls. But I have always managed to work and am currently employed by Sustrans and Bikeworks which involve interaction with clients which I enjoy.

We know that you trained very intensively to be selected for the Great Britain Para-Cycling Development program. How did you feel when you received an email informing you that you’d been accepted and what does it mean to you?

I first expressed interest in riding for Great Britain after watching the 2020 Tokyo Paralympics. After submitting my application, it wasn’t until 2 years later that I received an answer to attend a round of fitness and technical assessments at British Cycling’s HQ in Manchester. When I did these tests, it was exhausting and physically challenging (it took me a week to get back to my normal ataxia level). I then had to wait a further month to find out if I had been selected for the Paralympic cycling academy. Finding out I had been selected was quite simply amazing! In 2021 I had to move to riding a trike and it was like a huge weight had been lifted off my shoulders and I was realising that I had done what I was capable of and really wanted. I proved to myself that I was finally good at something. Even though I was so ecstatic with my happiness, I was nervous knowing the challenging work had only just begun. I knew that at the next camp I would have to prove that that was no fluke. I could back it up again.

In a world where determination can inspire many, how do you stay focused and motivated?

I stay motivated by knowing I have a clear goal. I understand that every training session, no matter how hard it is, is one step towards becoming a better person and a stronger athlete. My other

motivation is also to prove to others that people with Ataxia and learning difficulties can do and achieve with determination against odds. Despite my body and the challenges, I have to face, I strive to be the best I can be.

In your experience as a paracyclist, what do you think is the biggest obstacle?

There are many obstacles that a paracyclist faces even before stepping on a bike. This is when taking into consideration their particular condition and managing their limitations. But when on the bike the biggest issue we face is lack of Para-races to compete in. For example, there is currently only the National Para cycling series which is a number of races situated around the country. This is in comparison to able-bodied events where there are a great number of races around the country on any weekend. One of the biggest hurdles to overcome became more apparent as I explored how to buy a racing trike. I spent days researching this but came up with hardly any results, eventually I did stumble across one company called Trykit (the only company making trikes and axles in the Uk) who would construct a conversion axle for me to fit a road bike. Before this I owned a recumbent trike from ICE Trikes based in Cornwall. This was more convenient, but I still had to research the topic. What I have learnt from looking at and buying trikes is that there are definite tiers. Some are easier to find than others. It seems that the most common trike to find when looking for a trike on the internet is the normal shopping trike/everyday trike, then there are recumbents, which seem to be in a higher demand in America and the Netherlands, and racing trikes, which are much more difficult and rare to find (I am not aware of any companies outside the UK that manufacture trikes or conversion axles). The thing all of these trikes have in common is the price. This is expensive all the way up to extremely expensive and to the point of being unaffordable without help from businesses etc. On this front I have been extremely fortunate to receive sponsorship from Pophams, a local bakery and pasta restaurant in London for my trike.

Are there any ways to overcome this barrier?

The only way I can think of to solve the lack of races is to let people out there know that there is a sizeable disabled and para-athletic community who want to be involved and race, get stories out there and show people that we are capable of amazing things. Only then will people see that there is a demand for competition and the opportunity for large fields which is when we will be given more of a chance to shine. The second issue could be fixed by more reasonable attitudes towards physical difficulties and simple infrastructure changes. This is because there is no such thing as being disabled. We are only disabled because the world is not always geared towards us. All this is slowly changing through programs such as British Cyclings Limitless scheme which aims to shine a light on the Para community and make it access easier to be included in Para-Sport.

How would you encourage ataxians who have similar dreams but are afraid to pursue them

The best bits of advice I can give you is to dream big and work hard every single day because it will pay off in the end. My strength and training regime is keeping me moving despite my ataxia. The second bit of advice I will give you is to never listen to people who say you can’t. Instead, always aspire to bigger, better things but ensure you always stay grounded.

And lastly, enjoy the ride, saviour the moment and always ride on!!

Living with a rare condition can feel isolating, and Ataxia UK aims to reduce that feeling by coordinating a network of groups across the UK, where people affected by ataxia can meet up, socialise, share experiences and advice, or just have a good time. Why not join one of our support groups?!


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