Hi, my name is legomum1984!

legomum1984

Hi all,

I've joined the scope forum as I have started to notice changes as I get older and I'm hoping I may find some answers here.

Quick bio: I'm turning 40 this year, married, we have been together 19 years and have two teenagers. I work full time in admin. I have right sided hemiplegia with ataxia and muscle stiffness, I can walk with a very noticeable limp/gait but have little control of my arm or hand and regular muscle twitching, and my arm likes to shoot up to my shoulder without warning.

This has always been the case but things are just getting a bit more frequent, more pronounced over the last 18 months or so. My balance is worse than it ever was, I don't fall though I just feel less secure and more wobbly than before.

I don't know anyone else with CP, let alone my type, so any help or advice would be appreciated.

Thanks

onedayatatime

Just wanted to say hello 👋 @legomum1984 Sorry I don't have much to contribute to your post with regards to CP. I'm sure there will be others here that will have shared experiences and support to offer you. I joined the forum for very much the same reasons as yourself, for help and advice, but have also enjoyed engaging on many other different posts, subjects and chat. So just a welcome to you.👍

Albus_Scope

Hey there @legomum1984 and welcome from me too. 😊

We have the CP network, run by the very lovely @Richard_Scope who is a font of knowledge and I'm sure there'll be others who can empathise with you.

I'll just pop your discussion over to the CP category, so more people in hte know will be able to see and offer some top support. I hope that's ok?

Richard_Scope

Hi @legomum1984

You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.    

We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.   

The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.   

There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. 

Here is an excellent blog post about it:   

What Post-Impairment Syndrome Means to Me   

I would advise you to book an appointment with your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And get a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer to UCLH Cerebral Palsy Service.