Cerebral Palsy Awareness Day 2023

Today is Cerebral Palsy Awareness Day in the US. I’m from the UK and I’ve been raising awareness for it for years, as well as for World Cerebral Palsy awareness Day on October 6th. I enjoy any opportunity to raise awareness. The CP awareness colour is green.

From searching through my blog posts, I’ve done posts about my awareness efforts over the years (Facebook posts, trying to get people to wear green, sharing general information).

I’m re-posting some paragraphs from my post on this day last year. That’s far more detailed, but here’s more about how Cerebral Palsy affects me.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have weak muscles too.

I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures. 

So far this year, I’ve mentioned the words Cerebral Palsy and Hydrocephalus a lot in my daily life. This is because I’ve had to explain to doctors who don’t know me what disabilities I have. I’m also in the exciting but complicated process of getting new positioning equipment for my powered wheelchair.

Last year, a seating and posture evaluation revealed what my current seating doesn’t do for me, and this year we found someone to help. I’m waiting for a new belt as well as a chest harness and foot positioning aids.

I’ve been searching for a new wheelchair too. If you’ve read my blog before, you’ll know I love shopping. So far, it’s a slow process with the positioning equipment arriving since it’s coming from the US and New Zealand, but I hope it’s here soon.

Cerebral Palsy gives me a lot of daily challenges, and. I’m having more arm, hand and finger pain that’s been going on for a month and feels like numbness and also throbbing pain and pressure like someone is squuezing my wrists, fingers and forearms hard. I already have a lot of spasticity (muscle stiffness), as well as weak muscles.

Today as well as every day, I give thanks for my current powered wheelchair (Invacare TDX SP 2 NB) and the fact it’s a beautiful shade of dark purple and my comfortable Deep Jay 3 2 valve air cushion which I love, but which is not sold anymore 😦

I’m thankful to those who create equipment and medications to help those of us with CP.

I do wish the prices of equipment weren’t so high, as this creates worry and concern and means it’s harder to get. Lower prices would help so many people.

Happy CP awareness day if you have CP or know someone with it.

I’m now looking forward to World CP awareness day.

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