As part of Cerebral Palsy Awareness Month, Guinni shares her experience of growing up with cerebral palsy and her mobility.
I was diagnosed with CP at ten months. My gran, a mother herself to six children, saw that I only ever reached for things with my right arm even when my left was closer and pointed it out to Mum. My mum, a mother for the first time with me and aged 25, took me to the doctor. The diagnosis came as a shock.
I’m hemiplegic with my whole left side affected. My affected arm hangs at a slightly odd angle and won’t fully straighten or lock. I can’t straighten my hand palm-up and I have poor fine-motor skills on that side. My hips are tilted, as one side of me is shorter than the other, and my left leg is much weaker than the right. My ankle doesn’t move well; my toes hardly at all. I limp to varying degrees depending on how tired I am or how stiff I feel.
I didn’t walk until I was two – actually pretty good I think having spoken to some of the therapists at CP Scotland! My sister had arrived 13 months after me and we started to walk around the same time – she mastered it pretty young. A relief to my mum who up until then often had a baby under each arm!
I had a lot of hospital appointments and a lot of physio. As I grew, I had a great fold across my back as my dominant side grew more rapidly than the other. Mum and the doctors watched it carefully – unsure whether the left side would catch up. There was talk of operations – each sounding pretty gruesome to be honest.
I did step-ups by the thousands, walked lines for balance, had a built-up shoe for some time in primary school and squeezed squash balls to build strength in my arm and hand. I did none of this with grace or patience! My mum made sure exercises were done despite my protests and I will be ever grateful to her for it! I was regularly reminded to ‘put your foot down!’ as I would habitually walk on the tiptoe of my left, affected side. Likewise, I was regularly reminded to loosen my arm which would often curl up into my chest.
My left side caught up, however, and gradually the talk of surgery stopped. Physio and hospital visits continued right the way through childhood and I was always encouraged to do as much as I possibly could – to find a way. As the eldest of five there was always plenty of support and helping hands too!
I have to shout out my dominant side though. It’s something else! On that side I’m strong and dextrous. I would arm-wrestle boys at school and win; on my second attempt throwing a javelin I won a County Competition. I remember a PE teacher at school saying if both sides were like my right I’d be in the Olympics, hahhahaa! Maybe not quite but a nice thought.
Cerebral palsy is different for everyone. No one’s story will be the same anyone else’s. My two sides make me feel like two bodies in one person. One part which is vulnerable and babyish in what it can and can’t do – and one part which is strong, dependable…and could pretty much punch through walls if it needed to. It can be hard to know which you are sometimes.
There’s lots and lots I can do and I don’t think my disability is obvious to people who meet me. But in any given day I’ll make a hundred different modifications to daily tasks. There’s so much I do that’s a little bit different and a little bit harder. When joints are sore (my ankle and foot are the main problems for me) it can make me grumpy and tired.
Over March I’m going to share some of the changes or considerations I make every day to manage what I need to do. I also want to say thanks to the many, many friends and family who help again and again. I want to show some of them off too. I’d like to share a bit about CP and mental health – and also what I’m doing now to maintain movement and physical strength and mobility – particularly to protect my dominant side, which does so much more than it should have to.