How Healthcare Professionals Support My: Cerebral Palsy

"I was diagnosed with Cerebral Palsy as a baby. I didn’t know anything was different about me until school, really."

On International Day of Persons with Disabilities, it felt like the time to talk about my own journey with Cerebral Palsy & how Healthcare Professionals have and continue to assist me throughout.

Topics covered in this article

My Story With Cerebral Palsy

What Is Cerebral Palsy?

What Are The First Signs Of Cerebral Palsy?

How Is Cerebral Palsy Treated?

Job Roles That Support My Cerebral Palsy

How Do These Job Roles Support Me?

The Outlook With Cerebral Palsy

My Story With Cerebral Palsy

I was diagnosed with Cerebral Palsy as a baby.

I didn’t know anything was different about me until school, really.

If I was limited, I wasn’t really aware of it until I started getting funny looks from other kids.

I know the done thing is to talk about how bad living with my condition is, or to try and evoke a sympathetic response from the reader but truthfully, living with my Cerebral Palsy isn’t that bad.

I mean, it’s properly difficult and tasks that would be easy for other people become a pain in the backside but ultimately, I am happy.

Often, I think people imagine that living with a physical disability is just finding convoluted ways around tasks that other people would find easy but that isn’t the challenge.

I think the real challenge is accepting your circumstances.

I know that finding grim satisfaction in doing simple things mightn’t be everybody’s idea of marvellous fun but I find something surprisingly cathartic about it.

It would be easy to live in a make-believe universe where everything was possible for me but it isn’t and I can’t.

Don’t get me wrong, I did for a long time but once I set that disproportionately challenging idea of where I should be aside, I definitely became happier.

Since then, I have gone on to complete my A-Levels, University and now find myself here, in a job that I really love.

I guess my point is; if you are currently suffering with a disability and setting ludicrously high expectations for yourself, I get it.

I know that the inclination is to be stoic but take it from somebody who has been there; give yourself a break.

You’re doing brilliantly, I can unequivocally promise you that.

What Is Cerebral Palsy?

Cerebral Palsy is a long term, incurable condition that is caused by an infarction to the Cerebral Cortex of the brain… I think.

Please, any Healthcare Professionals reading this and thinking “What is he on about?”, feel free to correct me in the comments.

Surprisingly, sometimes having a condition doesn’t necessarily make you an expert on it.

Anyway, the condition is usually acquired at birth and cannot be cured.

It is diagnosed through MRI scans and other assessments of the body.

It is fairly common, unfortunately, and there is a varying scale of severity.

The impact can go from hemiplegia (which is what I have), meaning that only one side of my body is affected, all the way up to quadriplegia, meaning that every limb is affected.

Often, speech, hearing and general cognitive ability is impacted, also.

What Are The First Signs Of Cerebral Palsy?

As it happens at birth and involves a lack of blood/oxygen to the brain, you won’t be surprised to find out that the main early signs of CP are quite horrific.

For me, it was having a fit not long after I was born.

I think I had several, in fact, and it transpired that I had suffered quite a major stroke.

In later stage development, I think symptoms can include a delay to doing the things that babies/toddlers usually do.

If a toddler is slow to walk or talk, this can be a major indicator of Cerebral Palsy.

Though, I must add that if you currently have a toddler/baby who is a little slow to develop, please don’t worry, it probably isn’t Cerebral Palsy.

Generally, CP is diagnosed soon after birth.

How Is Cerebral Palsy Treated?

As I previously mentioned, there is no cure for CP.

Largely, treatments are aimed at reducing discomfort and promoting as much movement as possible, as well as help with accomplishing those pesky, everyday tasks.

Patients with Cerebral Palsy are focussed towards living with the condition and coping with the discomfort that can arise from it.

Physiotherapy is a great help for some people with the condition, while muscle relaxants can be used to help control muscle spasms.

I used to visit a facility when I was a child that allowed me to meet people with a varying range of Cerebral Palsy.

I observed that in people with more advanced Cerebral Palsy, sensory treatment can be a wonderful experience.

Occupational Therapy is the last treatment that I shall mention.

It’s probably the most useful that I found as it took a lot of the stress out of learning to accomplish tasks and also made me feel like I wasn’t alone when it came to figuring things out.

Job Roles That Support My Cerebral Palsy

My Healthcare Professionals consist of a group of people that liaise with each other to ensure that I get the right treatment.

These include a Physiotherapist, Occupational Therapist, Consultant Surgeon, GP and a Radiographer.

How Do These Job Roles Support Me?

My GP is always the first place that I will go with any concerns that I may have.

I have a wonderful GP that always does their best to ensure the very best referral for me.

This first port of call is incredibly significant as getting the right referral can be the difference between correct and incorrect treatment.

When I was younger, my main source of treatment was my Physiotherapist.

I used to have Physiotherapy once a week and to be honest, I regret letting that fall away as much as I have.

Physiotherapy is great, not just for muscle exercise but also as a vehicle to figuring things out.

My Physio was always incredibly supportive of me and in retrospect, I probably didn’t appreciate that as much as I could have done.

I am very grateful for everything that my Physio did for me, especially when I was younger as they assisted me in gaining a degree of mobility in my affected limbs that I might not have done, otherwise.

I think, also, having exercises to focus on really makes you feel like you’re moving forward.

Sometimes, I think it's easy to get caught in the trap of avoiding starting something for fear of it not working and regular appointments with my Physio helped avoid this.

My Occupational Therapist really helped me a lot in my middle teen years.

Figuring out how to perform everyday tasks and accomplish things that I never thought were possible.

Things like cooking and cleaning seemed like they would be unattainable for a long time but thanks to my OT, I have learned how to clean and cook competently.

As well as everyday tasks, my OT also assisted in helping me figure out how I would drive.

Growing up in a village nestled deep in the middle of nowhere made driving a necessity and thanks my OT, I am now able to get about as I need to.

Having a Consultant Surgeon is probably a bit of a curveball, as I don’t know that everybody with CP would have access to this service.

However, for me it has been invaluable.

Unfortunately, my longest serving Consultant retired recently and so I have lost that relationship, which I found extremely rewarding.

I was forced to make a lot of decisions about surgery at a young age and having a Consultant on hand to guide me through that process is something that I will always be grateful for.

It was one of the scariest periods of my life and the uncertainty probably would have got the better of me had it not been for my Consultant and Registrar.

Following on from this, my Radiographer was a really big help during the period that I was having surgeries for my CP. X-rays became a fairly common occurrence and my team of Radiographers helped guide me through a process that wasn’t all that much fun.

The Outlook With Cerebral Palsy

Cerebral Palsy will never get better, barring an Elon Musk induced miracle.

On the other hand, it doesn’t get worse, either.

Yes, I am pre disposed to joint and muscle pain more than able-bodied people and arthritis is a genuine concern, even at twenty six.

That said, the outlook is generally bright.

I will add that obviously this is not the case for everybody and on the whole, I have a particularly mild form of Cerebral Palsy, compared to a lot of people.

The variation is such that for some, CP can be devastating, unimaginably scary and in extreme cases, life limiting.

For me, though, it isn’t.

And in the course of the piece, I really want to highlight the positives that we can take away from such situations.

Not to be tawdry, or disingenuous but because I don’t want anybody grappling with something to go through what I did.

You might never find achievement in the places that you thought you would and that can leave you feeling incredibly hollow and scared; it is out there, though.

For me, achievement was figuring out how to tie my shoelaces one handed and cooking my first curry.

It was driving to Scotland and ultimately, realising that I had skills in areas that I could never have dreamed of.

The journey of coming to terms with a disability will never take you where you thought you wanted to go, it won’t reward you in the ways that you believed you wanted to be and it will drive you to apoplectic rage and the edge of reason twice daily but you will get there, you will figure it out.

Of that, you can be absolutely sure.

Job Roles Summary

Physiotherapist

Occupational Therapist

Consultant Surgeon

GP

Radiographer