Cerebral Palsy
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My CP is now effecting my right side

skennethskenneth Member Posts: 2 Listener
Hi there my name is Sam and I am 22 years old I have mild CP on my left side and over the last few months I’ve been experiencing pain in my right leg. I’ve seen a few MSKs and I’m due to see podiatry in about a weeks time, I’ve been diagnosed with early degenerative disc disease on my right disc and I am doing physio for that but I was convince that wasn’t the only reason for my leg pain as I have a sort of hammer toe on my big toe. I reached out to my child physio as she looked after me up until my 19th birthday and she said that this is down to years of over compensation and the way my gate moves when I walk so I am now to seek a neuro physio and get a wheelchair as I cannot walk very far. I just wanted to post on here to see if anyone has had a similar experience as I’m finding it quite tough to get the right help 

hope you guys can help
thanks  
Sam

Replies

  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Hi @skenneth (Sam) 
    Welcome to the community and thanks for posting. 

    It does sound like overuse of your less affected side. Do you wear AFOs? 
    Your G.P. should refer you to a multi-disciplinary team that includes neuro-physiotherapy via the Adult CP Care Pathway for the under 25s at University College London Hospital

    The importance of movement with CP. Pain, stiffness (more than your normal) and discomfort can be a sign of a lack of movement. 

    With CP, our nervous system is affected - how is different in every single one of us. Our nervous system, which is our own computer, keeps us alive and gives us the ability to move. 

    All our bones, joints, tendons & muscles are all connected & rely on signals received from our nervous system.  

    So the less we move, the less our nervous system is working, the fewer signals are being sent to connecting parts (muscles, tendons etc) the less we use our muscles the tighter they become, (pull an elastic band & this is what a tight muscle looks like, a muscle should look like a non-pulled elastic band ) our joints become stiff as they don’t know what they need to do.  

    So, imagine you have a laptop, it’s about 10 years old, you turn it on, but it takes an hour to fire up so you can use it. This is what your body is doing the less we use it, and why we get pain.  

    Strength (resistance) training is the best type you can do, it strengthens the muscles up, especially around affected joints. It makes sure you stay strong & keeps sarcopenia at bay, it helps speed up your metabolism, helps you lose weight, it helps the body with the latter 2 even at rest. (You can use anything as weights from milk bottles filled with rice or water, wine bottles, tins of beans, shampoo bottles, shower gel, washing up liquid etc) this can be done seated or standing. 

    I hope that is of some help. Let me know how it goes with the podiatrist.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • skennethskenneth Member Posts: 2 Listener
    Thanks Richard 

    I wear a DMO orthotics Lycra sock on my left leg and have a raise in that shoe and an insole in my right shoe for my hammer toe. Also recently discovered that the raise they gave me back in November was a cm to high so that’s also caused me issues. I’ve been working from home for 9 months so I definitely thing this has impacted it too

    Funnily enough my left side has been doing good it’s my right side that seems to be fed up with over usage I live in Scotland so I will try find the same department but up here 

    thanks for the really helpful info and I’ll let you know how podiatry goes 
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    @skenneth I'd get in contact with our friends at CP Scotland. They should be able to guide you.
    Scope
    Specialist Information Officer - Cerebral Palsy

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