Rebekah Knights rows for Llandaff Rowing Club and has been increasingly active in the adaptive rowing circuit. She shared some of her perspectives on rowing with Charcot-Marie-Tooth disease (CMT):
I’m Rebekah and I was diagnosed with Charcot-Marie-Tooth disease (CMT) when I was 19, whilst studying physiotherapy at university. CMT is a genetic nerve condition which causes the peripheral nerves to degenerate over time. This usually results in symptoms such as weakness below the knees and elbows, reduced sensation, balance difficulties and pain. I showed signs from a young age but always assumed I was just clumsy and not a sporty person.
This all changed when I got my diagnosis because with the knowledge I was gaining from my degree, it made sense to me that to manage this condition which would cause me to get weaker over time, getting as strong as possible everywhere else would be useful. I started lifting weights and really thrived on that for years. It was a solo activity so there was no worry about letting anyone else down or not keeping up. I could go at my own pace and see steady consistent progress.
CMT is progressive, so it gets worse over time. My weight training really helped but I started having more problems in the 2nd half of my 20s and for a while was having problems with my ankle swelling and becoming very painful which was restricting a lot of what I could do in the gym. I started trying to think about whether there was anything else I could try. I trawled through disability sport websites and didn’t come across a lot because most sports are either for able bodied people or are wheelchair based (and I wasn’t convinced about my wheelchair driving skills). I came across rowing kind of by accident having seen it come up on television. I noticed that it looked a bit like a sitting down deadlift – I’m quite good at deadlifts so had a little go on the erg in my gym and quite quickly thought “I bet this is more fun outside”, so looked into the local clubs in my area.
I joined Penarth Rowing Club initially then later moved to Llandaff rowing club and they’ve both been brilliant with me. I was classified PR3 earlier in the year but largely have been training alongside able-bodied rowers with a couple of adaptations. I had a really solid start thanks for the GB para rowing talent programme in my first year of rowing. I train a lot to keep up and have less muscle mass, ankle range and proprioception to work with than my able-bodied counterparts, but doing a sport which doesn’t involve a lot of time on your feet and doesn’t require any running or jumping has been ideal. My interest in weight training I think has helped and is something I’ve now been able to pick back up again since. I think para rowing as a sport has massive potential for people with conditions like me and there are lots of adaptations which can be made – for now due to my bad ankles I erg with the footplate lower, I sometimes use a grip aid and use a seat pad on and off the water so I’m at an easier angle to work with. Being stronger and fitter overall definitely helps with how I manage the condition and it’s been my first experience in a team sport which has been great. It has also allowed me the opportunity to row for Wales this year at the home international regatta which was a great experience and something that I’d have never believed possible when I was the child falling over her own feet daily at school.
I would absolutely recommend anyone with CMT to look into their local rowing clubs and give it a go.
Very informative writing, now I understand more about CMT.
Thanks for uour story Rebekah.