Post Impairment Syndrome and Cerebral Palsy

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Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    I'm glad you found the post helpful @Welli! Is it something you'd feel able to speak to your doctor about?
  • DanceDeb
    DanceDeb Community member Posts: 36 Connected
    Hi I am occupation therapist with mild Cp more movement disorder  facial expressions and tremors in left hand arm. High tone in neck and shoulder . Tight muscle on right legs. Arthritis in my hand and decrease power in my hands. Fatigue is a killer and reduces.my work hours and get lower rate pip for a cleaner. I just when to my Gp to  refer me to London college university hospital to check if I have post impairment syndrome. It was really hard to make him understand.  Because I appear to be normal??? But I am really struggling and he kept saying I'm depressed  grrr.why is it so hard. 😔 anyway with persistent I have a referral going to London. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I'm glad you've managed to get a referral to London @DanceDeb, it's frustrating to hear how close-minded your GP was about Post-Impairment Syndrome, keep us updated as and when you can. 

    I'd certainly be keen to hear how you get on :)
  • DanceDeb
    DanceDeb Community member Posts: 36 Connected
    I had my appointment in London a full MDT assessment and they confirmed that I have  post impairment syndrome disorder.  I felt I was really listen to and took seriously.  They suggested some technical, drugs and xray and PT exercises. I am really glad that you suggested the referral. Ordinary GP don't seem to  know about this disorder 😕 
  • Smile123x
    Smile123x Community member Posts: 9 Listener
    This is exactly how i feel at the moment. I've had one too many over compensating injuries and I fear its only going to get worse in years to come
  • Richard_Scope
    Richard_Scope Posts: 3,639 Cerebral Palsy Network
    Hi @Smile123x
    Have you spoken to your G.P. about a referral to a Multi-Disciplinary Team (MDT)? 
  • Smile123x
    Smile123x Community member Posts: 9 Listener
    Richard_Scope said:
    Hi @Smile123x
    Have you spoken to your G.P. about a referral to a Multi-Disciplinary Team (MDT)? 

    I haven't because I always down play my issues/ don't really know if that's suitable for me. I am seeing a GP physio so that pip can see the physio notes about my shoulder postural issues and I emailed my orthopedic people as I am due a phone call recarding my foot that I had my operation on. 

    One of my letters from Orthopedics says that an operation may not work for me due to deformities. I had the operation anyway but like I think I said above I have changed my working hours and how far I walk at work due to pain. They did say recovery would be difficult for someone with CP. So I need to ensure I do not make it worse by over walking and really try to pay attention to pain levels 

    I can't remember if I said I am going to request mri on back and neck so I have evidence and can find out more about my back

  • Richard_Scope
    Richard_Scope Posts: 3,639 Cerebral Palsy Network
    edited April 26
    As someone with CP myself, I can relate to what you have said there. I would have a chat with your GP about a referral to the UCLH Cerebral Palsy Team

    I know that we are always taught to focus on what we can do, which is good, but it can also lead to us downplaying issues. This can be hugely counter-productive in the long term. I speak from experience. I used to be very good at ignoring clear signs from my body.
  • DanceDeb
    DanceDeb Community member Posts: 36 Connected
    I have put an update earlier today sorry i could work out to put this on this feedopp sorry 😞 
  • Richard_Scope
    Richard_Scope Posts: 3,639 Cerebral Palsy Network
    No need to apologise @DanceDeb :smile:
  • Smile123x
    Smile123x Community member Posts: 9 Listener
    Richard_Scope said:
    As someone with CP myself, I can relate to what you have said there. I would have a chat with your GP about a referral to the UCLH Cerebral Palsy Team

    I know that we are always taught to focus on what we can do, which is good, but it can also lead to us downplaying issues. This can be hugely counter-productive in the long term. I speak from experience. I used to be very good at ignoring clear signs from my body.
    Sorry I started thinking I was posting in my discussion

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