March marks Cerebral Palsy Awareness Month, a time dedicated to raising awareness about the disability, promoting inclusivity and understanding. Cerebral palsy (CP) is a term used to describe a group of neurological disorders that affect movement, coordination, and muscle tone. These disorders are often caused by brain damage or abnormal brain development. Typically this occurs before or during birth. Mine was caused during labour. The cord wrapped around my neck. I also tried to come out feet first. Breeched.
A lot of people born with Cerebral Palsy are premies. Me and my friend, Sophie A, had the same due date. We both were born in March, 2 weeks apart. A coincidence that I absolutely love.
While the impact of CP can vary from person to person, the goal of this awareness month is to foster a greater understanding of the challenges individuals with cerebral palsy face and to provide a platform for advocacy.
What is Cerebral Palsy?
Cerebral Palsy is a condition that affects motor skills and movement. It can vary in severity, from mild to severe, and can impact different parts of the body. “Severe” can look very different depending on the individual. In terms of medical classification, both I and my two friends (who are both called Sophie) fall under the severe category. However, two of us can walk, though not very far. We need frequent breaks, and the ambulant Sophie (B) uses her wheelchair most days while Sophie A is reliant on it every waking moment.
However, looking at me, you wouldn’t know I had Cerebral Palsy unless you watched me do something. I mostly have the use of one hand. The other one can do little things, like hold bulky bottles. It can’t do small things, like pick up a pen easily. Wouldn’t be able to loosen a bottle with it… and opening crisps? Yh that’s done with my teeth.
Does Cerebral Palsy get better?
No. And it doesn’t worse over time, but the individual may feel it more. It’s like we were born in a body of a 20 year old. So, when I was younger, I could run a bit. Hit my teens and couldn’t run anymore. Now, I’m nearly 30 and there’s barely any ability to run. I struggle to get off the floor. Cold makes my joints ache like arthritis. My body feels like its nearly 50, not nearly 30.
Understanding this is key to supporting those with cerebral palsy and promoting a more inclusive society.
Are there different types of cerebral palsy?
Yes. There are different types of paralysis that affects the limbs.
I have right hemiplegia. This means that my right side is weakened. My left has to pick up the slack. It’s why I tire easily. My left leg carries the whole of my body while my right just offers a bit of balance. Sophie A has triplegia. This mostly affects three limbs, although she does have some cerebral palsy in her right hand as well. Sophie B has diplegia, which means two of the same limbs. For this Sophie, it is her legs. There is also monoplegia, which affects one limb, and quadriplegia which affects all four.
On top of the limbs it affects is the type of involuntary movement types we have.
- Spastic
- This is the most common type. It is characterised by stiff or tight muscles or muscles that are too loose.
- Dyskinetic
- Involves involuntary movements, shuddering, twisting, jerking, as well as changing muscle tone and difficulty swallowing…. and I tell you, when the jerks catch you off guard, they can be fricking painful.
- Ataxic
- This is the balance and co-ordination. Can result in shaking or clumsy movements.
- Mixed
- This is a mix of all three. Essentially.
I think I’m mixed. My muscle tone can change, and I used to struggle swallowing tablets. I also get the jerks. And I have spasticity. Which I tell you, for a part of the body that can’t feel external pain… its internal pain can go the frick away.
The Impact of Cerebral Palsy on Daily Life
Cerebral palsy affects people in a variety of ways, depending on the severity and type they have. In some cases, individuals with CP may experience limited movement and require the use of assistive devices such as wheelchairs, walkers or aids that help them do one-handed stuff.
Seriously, I often forget that most people use two hands for every day things. So much so that in my creative work I often use ‘hand’ in the singular form and have to go back to add ‘hands’ where most people would be using two.
Mobility
One of the primary challenges we face is mobility. Many individuals with cerebral palsy struggle with muscle tone issues, leading to stiffness or weakness in the muscles. This can make movement difficult and can lead to muscle contractures, where the muscles become permanently shortened. Essentially paralysing that muscle almost completely. We can also struggle with fine motor skills. My right hand really doesn’t like picking things up. Big or small. It will hold things still but won’t pick it up. And if I do involve it in daily tasks, it uses up a lot of spoons.
And of course, there’s also gross mobility. I can have a really good day and walk for ages without needing a rest. Then on some days, I can walk only 10 minutes before needing to rest for an hour and repeat. I hate the 10 minute days. There’s stuff I want to get done, goddamnit.
Speech
Beyond physical challenges, cerebral palsy can also affect communication. I have a speech impediment. It affects how I say S, Sh, W, R, L and Y. I used to hate my name (Shannon Weston) for this very reason. The amount of times I’ve been told to repeat, or what they repeat back sounds nothing like what I said. I still hate that this happens, but am more content with my name now. Still, this can make it difficult for me to express myself and communicate effectively.
External verse Internal sensory inputs
There’s also an issue with external and internal sensory inputs. Things like temperature are hard to understand. I can’t feel whether a bath is the right amount. It could be hot and boiling my skin off and my body wouldn’t notify me for a good 10 minutes (assuming it’s really hot/cold). But any change in the weather outside? Yh it’ll notice that to the extreme? In the summer, it dropping from 35 to 20 degrees celsius is great for my left side. My right though? It complains like it has just been put through a freezer and is about to get frost bite.
I really miss when our summers were always 18-22, with highs never going past 26. Less pain from the difference.
My body also has different ways of feeling pains. I fractured my wrist once during phab camp. Yh, I didn’t know for a week. Right now, I have a prescribed reusable splint on because I’m not sure if I damaged it by electrocuting myself with FES or it is having its first spasm-lock attack in years. That is… I think people say their limb has gone dead… except I can’t shake mine to stop it from being dead. It still could have been caused by the electrocution though.
I have to be careful when in the kitchen. We have one of those hobs that do not have the flame to show you it is on. If I was cooking and my hand involuntarily moved and put itself on a hob that was on, I wouldn’t be able to feel the pain straight away. I have to be cautious where it is in a dangerous environment all the time. Like a child… except this one is attached to me.
Can people with Cerebral Palsy live normal lives?
Well, it depends on what you mean by “normal”. Our disability is never going to go away. Most of us are going to need care for daily tasks that we cannot do ourselves. When the time comes that I no longer live with my dad, I am going to need a carer. However, yes we can do most things other people do. Go clubbing (if that’s your thing), have relationships, have children, have careers etc etc.
We only can’t do those things when there is a barrier in our way. Usually the way people perceive us makes things harder. As does accessibility to things like public transport and venues. Sophie A used to be refused lifts home from taxi drivers with lame excuses why they couldn’t take her even when there was room in the car. Or they’d claim the customer is drunk.
Really, if people treat us just as they would treat any other person, they’d see we can do so much. It just looks different to how an able bodied person might do it.
