CP

MorganFarrier
MorganFarrier Online Community Member Posts: 2 Listener
in Cerebral Palsy Network
Hello everyone 

I’m new here 
i have CP and have grown up living with it having gone through school , highschool and sixth form then into Adult life each time experiencing Bullying from people all saying mean things about the way I walk and the splints I used to wear . When I was 11 I stopped wearing splints and was never properly introduced into adult orthotics now that I’m older I’ve seen my GP as I’ve been experiencing pain and difficulty walking aswell as doing daily tasks which I have always experienced but my new wife had told me to get help as my family were never ones to sympathise they’d always say deal with the pain or it’s not that bad my CP affects both my legs more so my right leg hip down causing tight calf muscles and spasms the daily 24/7 pain I feel is through the roof I walk on my toes on my right foot which is also shorter than my left and have difficulty some days doing daily tasks I’ve been on Baclofen which at current has done nothing and I have an appointment with neurology in January for them to check me over I’ve been signed off work since November due to the pain and spasticity caused by my CP I was wondering what other people’s experience with baclofen not working and what happens next was I do daily stretching for my entire body as I don’t want to just stretch my calf muscles yet that doesn’t do much to stretch my muscles or relieve pain. Do any of you know what to expect in a neurology appointment and how to deal with not working due to CP

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @MorganFarrier

    Welcome to the community.

    It's fantastic to meet you. You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and use 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. 
     
    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 


    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about having an Adult CP Review
     
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

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