WHAT IS CEREBRAL PALSY?

I'm no doctor,  but I thought I would give you a brief overview of what cerebral palsy is and how it is caused - from someone who lives with it.

Cerebral palsy is a condition that affects the physical movement of an individual. This could be their legs, their arms, even their  mouth, or all of these rolled into one. It is often caused by an incident that causes damage to the brain either at birth or shortly after birth. It is normally diagnosed within a year to 18 months,  however, in some cases this can be longer.

Cerebral palsy is not classified as a learning disability although some individuals may experience this in addition. The condition affects 1 in every 323 people, however, there are many different variances and severities meaning everyone’s experience can be very different.

I'm not going to do into too much detail about all the different variants as that would be a veryyy longggg blog post and to be honest, I don't know them all.  The aim for this blog post was to give you a first hand insight into cerebral palsy and some of the difficulties I have faced and how to overcome them.

My diagnosis is a little bit of a tricky one because it changes depending on who is diagnosing you. The reason I say is because while being assessed for my SDR surgery (Click Here to read about that) in America I was diagnosed as diaplegic meaning that my condition only affected two of my limbs, where as,  in the UK I was believed to be quadriplegic with all four limbs being affected. 

The reason for this diagnosis was because I have dislocated radial heads (fused elbows) meaning I can’t supinate my wrist (nightmare when you want a Malteaser 10 points if you can work out what I mean). It also means that I have less finer manipulation meaning intricate movements with my hands are very difficult (don’t let me operate on you). Having said all this my first official diagnosis was when I was around 18 months old.

A photo of taken from above looking down into Charlie's lap where is hands are shown facing each other showing his restricted wrist movement.

SO WHAT ADVICE WOULD I GIVE TO A YOUNG PERSON WITH CP OR A PARENT OF A CHILD WITH CP? 

  1. Firstly, get them stretching from a young age or start doing it regularly as soon as possible. The reason I say this is because when I was younger I had very little pain from my tight muscles, which is unusual for anyone with Spastic CP like myself, however, now it is a regular occurrence.  If you can incorporate stretching into your daily routine and stay on top of it, muscle pain will become a lot more manageable.
     

  2. My next piece of advice is for individuals that are 12 and above - make sure you're taking the appropriate medication. What I mean by that is - not all painkillers are suitable for every pain and the more you understand which ones work for which scenario the better you'll be able to medicate yourself without over-medicating.
    F
    or example, Ibuprofen is great for help with general muscle tightness and pain.  However,  with anything like a muscle spasm or cramps,  a type of muscle relaxer may be more beneficial (however they are hard to get in the UK) it's important to understand what each medication does and how it can help you.
    You do not want to be taking lots of Ibuprofen when it doesn't actually help, as it can have a negative affect on your health.
     

  3. Get active, obviously this point is very very dependent on what the severity of your condition is. However, I would say do what you can as it     will massively improve your quality of life. Even if it's the smallest movements each day - wheelchair yoga, wheelchair boxing, going to the gym, swimming, walking e.c.t.
    The main reason I stress this so much is because I got heavily involved in exercise and that led me to no longer needing to be registered to a surgeon because I was the best I could possibly be at this time. Obviously, I can only comment on my own personal experience and I know some of the activities listed above you may not be able to do. However, feel free to drop me a message if you're struggling for ideas and I will try and help you.

I hope I have given you a helpful overview of cerebral palsy and helped you understand some of the many difficulties we face on a day-to-day basis and how to combat them.