Guest Blog: Living with Quadriplegic Athetoid Cerebral Palsy

I would like to introduce you to guest blogger Ailsa who has written a guest post discussing her disability, Quadriplegic Athetoid Cerebral Palsy:

Hi everyone, I am Ailsa. I would like to thank Emma for letting me write for her blog… I am the proud owner of Brains on Wheels. Brains on Wheels is my personal blog, where I write about my experiences surrounding my disabilities. I created my blog in February, 2016. It didn’t have a proper name at first, but shortly after, Brains on Wheels was born.

What is Cerebral Palsy?

I live with Cerebral Palsy, which is a disability caused by damage to the brain. Cerebral Palsy comes in many forms and no two cases are exactly the same, for example; if two people have the same type of CP, the chances are that it would affect them differently. I wouldn’t say that my disability is that severe because I can do a lot of things and there are people who are worse off than me. Here’s one thing that I can do: I can use my feet to use my computer, I can do this quite easily.

What caused my Cerebral Palsy?

When I was born, I didn’t breathe; I was stillborn, but I was resuscitated, it took the doctors about twenty minutes to resuscitate me.

Around five percent of babies are born on their due date, and I was one of them.

As a result of me not breathing, in that period when my brain didn’t get the oxygen it needed, brain damage occurred. I was on a ventilator for two days; the ventilator took breaths for me by pumping oxygen around my body and into my brain. I had tubes all over me, this was to help me breathe.

If I didn’t have the tubes on me, you could never tell that there was anything wrong with me because I was a perfect colour, all the other babies were premature or they had something wrong that was visible.

There were about three stillborn babies on that day, and I was the only one that survived. The doctors gradually turned my life support down so they could find out whether I would breathe on my own, and I did. I came off the ventilator on my sister’s 18th birthday, which was a wonderful birthday present for her.

My type of Cerebral Palsy

There are lots of different types of Cerebral Palsy, too many to count really! My type of Cerebral Palsy is called Quadriplegic (affects all four limbs) Athetoid (uncontrollable movements) Cerebral Palsy and it effects every muscle in my body, apart from my heart, luckily. My right arm is affected more than my left.

Being a wheelchair user with Cerebral Palsy

I like to be as independent as possible, but there are some things I need help with. I need support with all daily living activities. There is no shame in asking for help of any kind.

I used to drive an electric wheelchair with head switches, but I found this system extremely slow and tedious. At the time, it was the only one that I knew about, so I just got on with it. Even though I could use it, it frustrated me a lot because I had to keep stopping and starting to change direction, which made it even more slow.

It didn’t help when the chair veered off to the side either, but I just got on with it because I thought that was normal… My new one had a gyroscope, which is a device that was meant to help keep my wheelchair moving in a straight line, but even with that, it still veered off a lot. I’d be going along, with the arrow pointing straight on, and it would slowly divert to the side; mainly the left, but sometimes it went over to the right as well. Yes, it was irritating, but it was the only thing I knew…

This was always tiresome for me because I had to concentrate on controlling my head and body to move my wheelchair. I never managed to control my electric wheelchair for long periods of time anyway, but as I got older, I was controlling the chair myself less and less. Unfortunately, my body just couldn’t cope with it any more.

I now control my wheelchair with my foot! I figured that if I can use computers with my feet, then I may be able to use a wheelchair with my feet too. Last year, I asked to try that theory… It works really well for me! This gives me a lot more independence compared to what I had with the switch system. It’s much smoother as well… No more stopping and starting to change direction! I would even go as far to say that it has changed my life for the better.

Societies perceptions of Cerebral Palsy

Some people say that they “feel sorry” for me and that makes me feel unhappy and awkward because I am who I am and I can’t change that. I don’t want anyone to pity or feel sorry for me just because I have Cerebral Palsy. If I didn’t have CP, I wouldn’t be the person I am today and I wouldn’t have met some of the awesome people I know! So, please don’t.

If you asked me, I’d say I am very lucky to be here today.

Disability campaigning

I am also a campaigner. At the moment, I am campaigning to Facebook in order to try and make them change Instagram to make the site fully accessible on desktop computer for people who aren’t able to use a mobile phone. You can read about this on Brains on Wheels or my petition at Change.org.

Thank you for reading this, I hope to see you again over on my blog. Read more about what I get up to by visiting and subscribing to my blog, Brain on Wheels.  You can also follow me on Facebook,  Brains on Wheels Twitter, Ailsa’s TwitterInstagram & Pinterest.

Also please check out my guest blog post on Brains on Wheels titled Mobility Aids.

If you would like me to be a guest blogger and/or you would like to feature as a guest blogger on my blog, please contact me.

Like Rock For Disability on Facebook, follow me on Twitter @P94Emma, follow me on Pinterest or use the Contact Form.

DONATIONS

Thank you for visiting Rock For Disability! If you enjoy reading my blog content, please consider supporting me by donating money to help fund future blog posts. Plus 20% of each donation will go to a disability charity at the end of the year! ♿️🎸🎶🎵🤑😍❤️

£5.00

 

Published by Rock For Disability

This blog follows my life as a disabled person, reports disability news, share music reviews, give advice pieces, shows multimedia content plus much more!

Comment...