This may end up a bit of a ramble because there is a lot of history and emotion behind the topic.
Some of this will surprise people. I put in a lot of hours of training each week, and most people likely have no idea of my struggles. I mentioned the downhills and neuro stuff here and there, but I suppose I didn’t like how it made me look “less than” in a way. But with a disability in some ways, I am not as good as others, and it’s something you have to learn to accept.
The same girl winning Zwift races, doing their FTP for an hour, can’t grab a drink on a ride; it’s a paradox.
Now, if we start at the beginning, in 2021, I started road cycling in the UK. I noticed “issues”, but the consensus was that as I gained more experience these issues would disappear.
They didn’t disappear.
I also noticed my issues fluctuated; again, I didn’t really think that much of it at the time. I had neurological issues since I was 12 that fluctuated, so, in a way, it was normal to have the good & bad day thing. I cycled with various clubs, with very experienced riders, and again nobody pulled out the “is this something neurological?” card.
Some people are not so quick to pathologise issues. Although the terms narcissist and autism are thrown around as casually as a hello these days, stuff like this people minimise.
This is a quick illustration of what “pathologise” means vs explaining away.
A man wants his books in a row; the man has a tantrum because the books are not in a row, the woman says “you’re autistic” or “you have OCD”. This is pathologising the issue, which MAY be 100% correct; you could also give other reasons for this: he is tidy, he likes when there is order, he is meticulous (see making it a good vs bad thing), he respects his books, you get the drift. So you can jump to a medical diagnosis, or you can find other reasons to justify this example, my example, most examples.
In my example, a lot of people never thought to pathologise at all, which is odd given my past neurological diagnosis of multiple sclerosis, which I’m pretty open about. The “mystery object” in my cerebellum, on the other hand, which is newer and maybe the culprit, most didn’t know about, as I was in the “maybe if I ignore it, it will go away” stage.
Let me also point out that my symptoms on the bike were less pre-2024, but still, looking back (hindsight and all that jazz), it is crazy no one questioned why I struggled with such small things!
Then we skip forward to 2024; I moved to Germany and in the spring had an episode we still do not have a better name for other than “a stroke-like event”, and life changed. Cycling all summer was a crapshoot. I had good and bad days; I still ploughed forward, even if I was slower than I had been and had to stop a lot because of my balance. I had such an overnight change; emotionally, this was hard to process. (and still is) .
Basically, the left side of my body had numbness/weakness issues. I had oscillopsia (I still do to varying degrees), which is best described as “stuff moves”. I’m sure you have seen a shimmer on the road on a hot day; it’s a mirage. Well, you can see that on a road on any given day if you have oscillopsia. Some roads are shinier (and more annoying). Rain? That can make the road a mirror (very bad). Cobbles and other patterns- can’t look at it to save my life. Other bumpy roads? The horizon can jiggle.
For the non-medical crowd, your eyes can be important for your overall balance. I say “can” because some folks have amazing balance without them.
Balance is a three-system job: vision, the inner-ear vestibular system, and proprioception (sensors in muscles, joints, and skin). Ultimately, everything is then processed in the brain.
You know how people grab their bidon, have a drink and put it back? That is your balance working. When you grab your phone out of your pocket, or a tissue or a gel? I mean, if you want to talk about expert mode, you have the guys in the pro peloton who adjust their bike, take off rain jackets, etc.
For me? All of this has never been possible. My right hand can come off the bar sometimes, with some forethought, but only for small tasks. And like everything, it fluctuates. Some days it’s better than others; some days the hand does not come off the shifter for anything. The left hand? HA HA HA that wanker is just about glued there!
So bottles, gels, etc I do at turns/lights, etc. Again, no one really questioned this until 2024 and my “episode we don’t have a label for”.
Now, we come to something I am famous for: downhills. This is when my ataxia really kicks my ass because gravity is working with you instead of against you, and ataxia makes that extra momentum hard to control.
I am faster uphill, but science explains it. (Well, there is some talent there too, let’s not forget!)
Uphill is metabolically harder, but mechanically it is much more forgiving for me. I have resistance against the pedals and less of that feeling of being pulled forward. I am pushing against gravity. The brain is working less; the muscles are working more. It is mechanically more stable for someone whose main problem is balance rather than raw strength. And being tiny is an advantage 😛
Downhill, I don’t have the resistance to push again. Your brain is processing a lot more at the time, and you have various stimuli to tell your brain if it’s “safe” and where you’re at on the road. Cerebellar ataxia specifically is worse, and the result is a feeling that you’re being pulled forward. (Some days I’m lucky and go downhill in a headwind, so I have the resistance even though I’m going downhill and it makes everything easier; don’t forget I said easier, not perfect 😆)
And no talk about downhills is complete without talking about fear. Going downhill IS more dangerous, and it CAN be more scary for even the best riders. I obviously have downhills where I live that I hate and get anxious on the approach. (There is a very steep, busy road one that drives me nuts, for example)
If the cars are close and annoying, the anxiousness ramps up; some are just steep, and side wind can then make a cocktail of “fuck my life, why am I on a bike?” Some days are easier than others, but even on those I’m using way more brain cells to get down the hill than one should, and given my size, yeah, that obviously makes me slower.
What else do races have? Oh yes, corners. Well, to my dismay, the para cycling world often has small crit-like circuits. Tighter corners, fewer hills, etc.
There are time trials, which can mean fewer corners (the worlds right now in the US has several).
Something from my classification that stood out: “most riders in my category have other issues, but they have their balance so the corners are not a problem.” And he’s right, but yeah that bloody hit me like a knife.
The topic of racing on a trike has come up. I HAVE looked at trikes in 2025 after a mountain biker hit me and I sustained a concussion. Life changed, and the ataxia was the worst. My balance just completely went to shit. And more issues started, with my hands, speech, etc. Some companies make a special axle for trikes. So basically it is a road bike frame with 2 wheels vs 1 in the back.
Last year, just knowing you could buy these really helped me. There WAS an option if my balance didn’t return. Not long after the crash, I couldn’t ride at all; I was stuck inside on Zwift while it was lovely outside. I really struggled, and it took SEVERAL months to get to where I am today, which is much better, but still with disability.
Trikes come with downsides as well, but it would remove one of the things that currently puts me at a disadvantage and let the racing be more about my actual cycling ability, as Zwift does. But it is more complicated to transport, and how they ride is a mystery. And well, it isn’t a 2-wheeler; god knows how that will go down on social media. I’m already harassed for my low saddle height and pedals.
So for now, I’m racing as a C2 paracyclist and figuring out what comes next. I’ve got some races I’m looking at for next month, and now it’s mostly about getting my head around the whole thing — and getting the bits and bobs I need to actually race them and exploring the trike option.
I do need bits and bobs for the races; if you’d like to help out, reach out via Twitter DM or my links.