I have cerebral palsy. Does anyone know about post impairment syndrome? — Scope | Disability forum
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I have cerebral palsy. Does anyone know about post impairment syndrome?

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Sharkey26
Sharkey26 Community member Posts: 36 Connected
edited September 2021 in Cerebral palsy
I have cerebralpalsy aspergers anxiety and depression I was wondering if anyone knows about the post impairment syndrome as I think I may have it I get such bad pains to the point sometimes I can’t move my leg for a while becouse it hurts so much. I haven’t had help with my cp since I was 16 when they said it will never change so nothing could be don’t really then got discharged from the child unit
i am now 28
i have spastic diplegia 
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  • Reg
    Reg Community member Posts: 109 Pioneering
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    Hello @Sharkey26

    I have spastic diplegia and am in my mid 50s . 

    I suspect I have post impairment syndrome but never had it formally diagnosed.

    I had more difficulties with CP from when I reached my 20s but at the time post impairment syndrome certainly was not talked about as everyone said CP stayed the same.

    I tried to get some help for my worst leg prior to Covid as I  found it was getting stuck because it sub luxes and I have hip dysplasia and arthritis -  all not helped by how I have walked over the years.

    I have had more surgery but am still subluxing which is a real pain when you are hobbling anyway.

    Richard the CP officer is sure to have lots of good information and ideas but one thing I would suggest is seeing if you can get referred for neuro physio - they will try and help you strengthen your non working muscles and physio makes me think it will help things - which is a positive . 

    I hope your doctor can help as it is worth getting some advice - I wish I had gone earlier so hope you can get some help from your doctor and a referral


    Reg

    I am a Scope volunteer.
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited September 2021
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    Hi @Sharkey26 - & welcome to the community. I was just about to reply, then saw Reg's comment. I was also about to mention @Richard_Scope our Specialist Information Officer for CP. You can see Richard's info on post-impairment syndrome here: https://forum.scope.org.uk/discussion/56078/post-impairment-syndrome-and-cerebral-palsy?  He will also be happy to answer any queries you have. I would also agree with Reg that asking for a referral to a neurophysiotherapist may be helpful, something Richard also mentions.
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  • Sharkey26
    Sharkey26 Community member Posts: 36 Connected
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    Thank you both for this information and I will try and get to a Nero physio and will look at the link that you have posted thank you both so much for commenting to help me 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    You're very welcome @Sharkey26 - as a physio I specialised in treating babies & children with CP (quite a long time ago). Fast forward to me joining Scope 2 years ago, I see how difficult it has been for adults with CP. Nay, as you mention, the lack of help once a child reaches 16 has been abysmal, not just with CP but other disorders, but the lack of care for some young people & adults with CP is something I've been shocked about. My best wishes, & please let us know how you get on.
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community from me too @Sharkey26 :) 

    I'm glad that chiarieds has already pointed you towards Richard's information on post impairment syndrome, and I'm sure he'd be happy to answer any questions you may have when he's back in, too. 

    Have you ever heard of the Adult Cerebral Palsy Care Pathway? It's not something I know a huge amount about, but this is also something Richard may be able to chat to you about. 
    Adult Cerebral Palsy Care Pathway (your G.P. should know about this)
    I was also wondering whether you might be interested in joining Scope and CP Sport's CP Cafe, which is a space for adults with CP to get together and chat? 
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
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  • Sharkey26
    Sharkey26 Community member Posts: 36 Connected
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    No I haven’t but I will take a look.
    thank u so much
    is that chat thing messages or zoom? 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @Sharkey26 - looking through the thread here it looks like the CP Cafe uses Zoom: https://forum.scope.org.uk/discussion/73129/our-next-welcome-cafe-is-monday-14th-of-december-4pm-until-5-30pm#latest   this is looking at Richard's post on August 5th  Also look to the top of the page as to how to register. I'm sorry I don't know when the next meeting may be, but I'm sure Richard will let you know.
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  • Sharkey26
    Sharkey26 Community member Posts: 36 Connected
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    I really appreciate you giving me that information chiareds but sadly I won’t be doing that
    just this messaging is sending my anxiety through the roof I can’t handle things like zoom
    thank you I really appreciate it though 
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hi @Sharkey26
    Good to meet you.
    Most people living with CP will experience some aspects of Post-Impairment Syndrome (PIS). The neurological aspect of our condition doesn't change but the physical side will change as we age.
    There is a free talk about PIS on the 20th of October. You do not need to be on camera, you can just listen :)
    Free Bobath Post Impairment Syndrome Meet-UP — Scope | Disability forum
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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