Hi, my name is LFox!

LFox
LFox Online Community Member Posts: 3 Listener
in Cerebral Palsy Network
I'm new to this whole online community thing.

I'm looking for advice/ experience from any adult with "mild CP" (sorry about rating it, I have no other language for it). I have right sided Hemiplegia and am in my late 30s. 

Since having my daughter 4 years ago, I feel I've been bent further out of shape, ie I'm more lop-sided in my gait, if that makes sense?

I am interested in anyone's experience similar to mine.

Also, has anyone had bunion surgery to correct big toe (mine is so bent over now and I think it might help)?

Thanks for reading.

Comments

  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @LFox

    Good Evening & Welcome it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    Yes we have got a senior member who has got CP.

    I will forward your post onto him for you if that would help.

     Hi @Richard_Scope

    Can you please offer me some help with this post as they would like to me someone who has got C/P.

    @steve51

  • LFox
    LFox Online Community Member Posts: 3 Listener
    Thanks so much!
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @LFox

    Thats my Pleasure.

    @steve51
  • chiarieds
    chiarieds Online Community Member Posts: 17,155 Championing
    Hi @LFox - & welcome to the community. Thank you for joining & sharing about yourself. I do appreciate you 'rating' CP, but, in my opinion, you either have CP (or any other disorder, or not). However these do affect us all differently, & if it's causing problems, then it's good you've sought advice.
    I'm sure @Richard_Scope will help & advise. May I ask if you've mentioned your increasing problems to your GP. I know not easy currently, but perhaps you could ring? When possible, physiotherapy may help with your gait. :)
  • LFox
    LFox Online Community Member Posts: 3 Listener
    Thank you for that, I have always felt nervous about not qualifying my disability. With a medically termed "mild impairment " label, identity for me has always been an issue. But that's a whole other discussion!! ?

    I have talked to my GP, but as usual allowed myself to be fobbed off. I need to go back to them for sure. Ideally I'd love to see a CP specialist who will look at me as a whole. I have found that GPs have expected me to be the expert, which I find exhausting.
  • Richard_Scope
    Richard_Scope Posts: 3,793 Cerebral Palsy Network
    Hi @LFox
    Great to meet you! I have quad CP and I'm a dad too. Unfortunately, your experience is not unique. As we age people with CP experience a certain amount of physiological burnout due to the way we move and the stresses we put on our limbs and joints.

    Technically, There is no such thing as a CP specialist. CP in adults should now be treated by a multi-disciplinary team as directed but the National Institute of Clinical Excellence (NICE). This is a set of best practice recommendations that I and Scope was involved in creating. Your G.P. should be aware of these and refer you accordingly. Here is a link to the NICE Guidance

    There are centres of excellence that you can be referred to:
    Robert Jones and Agnes Hunt Orthopaedic (RJAH)
    University College London Hospital (UCLH)
    These centres use multi-disciplinary teams that will cover neurology, orthopaedics, physiotherapy etc.

    If I can support you with any of this, let me know.

Categories