Para-cycling World Champion Katie Toft writes about living with Cerebral Palsy

Katie is a 5 time Para-cycling World Champion for the C1 class, in 2018 she won gold for the individual pursuit in Rio. In August 2018, she then took a clean sweep of the medals in her class at the Para-cycling Road World Championships in Italy – gold in both the Individual Road Time Trial and Road Race. Katie successfully defended her individual pursuit title at the 2019 Para-cycling Track World Championship and also added gold in the Scratch race.

Katie started cycling at our Wheelers group, in a later blog, she (and her dad) will be telling us all about her first involvement in cycling, wheelers and her career to date, but for now we are delighted to have Katie share with us more about her day to day experiences and what life is like living with Cerebral Palsy (CP).  Over to you Katie …

I’ve had Cerebral Palsy for 27 years, 27 – that went fast! Along the way there have been a lot of experiences; people making judgements, suggestions on how things should work, how my family should treat me……. This blog is about how people with Cerebral Palsy CAN do lots of stuff, but need a little bit more help, or time, or just need to think more creatively about a task.

Personally, I’d love to get my parents a brew, even just make one reliably without spilling hot scolding liquid, but that’s not going to happen – mainly because my balance isn’t great and my walking is……well, wobbly.

Spatial awareness and Cerebral Palsy just doesn’t fit, I’ve lived in the same house my whole life and yet walk into things daily, I usually hit my shoulders on door frames, then have bruising, or can’t move my shoulder properly and need physio.

Just sitting can be painful – I’m sat writing this blog and my right hip is starting to scream at me. To be fair, it’s not been happy since autumn, hurting, aching, in spasm every day, cycling has stopped it ceasing up but it won’t improve really until its warm again. Unfortunately, as soon as the weather is cold, a lot of people with Cerebral Palsy just struggle – it’s not that they can’t do stuff, it’s just harder.

My parents were told I’d never walk – I can walk, but not far. I use my wheelchair when I’m out with family and friends; I’d love to walk, even go for a run, my brain says yes, but my body says no, it’s very frustrating. Originally, I didn’t want to use a wheelchair at all because I feel it singles me out, highlighting my Cerebral Palsy and I just want to be Katie, however, the pain of walking is too much. When your dad says “what’s that thudding noise?”, and it’s actually your hips clicking with every footstep – you know that maybe it is time to stop. That’s where cycling comes in; I use it to stay fit and strong, cycling started as physio and progressed somewhat – the winning medals part, that takes real hard work.

So here it is, what it’s like to have Cerebral Palsy, more importantly it’s about what it’s like to have Cerebral Palsy and be an athlete. Yes an athlete! Yes, it is possible. I am a cyclist in the most disabled category for “normal” bikes (C1), we are quite a rare bunch who have to overcome so many obstacles on a daily basis (and that’s before we get on a bike or in the gym). I realise how this must sound, so you can ride a bike, but daily tasks are hard … yeh right, but that’s the reality for many disabled people up and down the country and even around the globe. Even for Paralympians, we are basically, a group of athletes, all disabled, all outstanding at their sport, BUT for some, walking and talking is hugely difficult.

 

See Katie’s next blog for more about her cycling achievements