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New to scope. Aging and CP

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sezsixx
sezsixx Community member Posts: 7 Connected
edited February 2022 in Cerebral palsy
Hello, 
I will be turning 50 this year, I know we all slow down as we age, but the older I get, the more my cp (spastic diaplegia) is impacting on my life.

I'm glad I've finally logged on! 

 I've already seen your video on aging and cp and I hope to find support and laughs along the way. 

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Hi @sezsixx

    Welcome to Scope's forum. It is great to see you have joined us. How are you today?

    I am sorry to hear your cp (spastic diaplegia) is having an increasing impact on your life. That must be really difficult to deal with. How are you currently feeling about it?

    Unfortunately, cp (spastic diaplegia) is not an area of my professional knowledge. This means I am hoping someone with more knowledge in this area can respond to you soon with some helpful strategies. 

    In the meantime though, I just wanted to greet you. I know sometimes a listening ear and knowing you aren't alone are some of the most important things you can receive! Do just let us know if there is anything, in particular, we can do to support you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • sezsixx
    sezsixx Community member Posts: 7 Connected
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    Thank you very much. 
    Any tips/help would be appreciated. I'm just feeling quite low ATM and having trouble with NHS services. 
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  • woodbine
    woodbine Community member Posts: 11,755 Disability Gamechanger
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    hi @sezsixx and a warm welcome from me also to scope, how are you today?
    2024 The year of the general election...the time for change is coming 💡

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  • sezsixx
    sezsixx Community member Posts: 7 Connected
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    I'm a little under the weather today! Not feeling to bad though! Thank you 
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  • Sandy_123
    Sandy_123 Scope Member Posts: 51,906 Disability Gamechanger
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    Hi @sezsixx welcome, join in with the topics on the site, there's a whole range.  
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  • Richard_Scope
    Richard_Scope Posts: 3,660 Scope online community team
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    Hi @sezsixx
    Good to meet you. What issues are you having with NHS services? I am fairly sure I can guess but just want to be sure.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    edited January 2022
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    Hi @sezsixx

    Thanks for your response. I am sorry to hear you are feeling quite low at the moment and are having trouble with NHS services. Would you like to talk to us more about what this is currently looking like for you? We are here for you and are listening to you  :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @sezsixx It's great to meet you welcome to the forum :) I also have CP (spastic diaplegia) too, and have noticed I feel a bit more limited physically, as I move into my early 30s. 

    I hope you enjoy exploring the community, let us know if there's anything we can help with.

    Alex
    Online Community Coordinator
    Scope

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  • sezsixx
    sezsixx Community member Posts: 7 Connected
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    Thank you everyone,! 
     
    I had an app for referral for physio. As I walked in I was asked why I was walking like that?! 

    I told her I have cp.
    Ok
    Then she said she didn't like my shoes, did I not have any cooler ones? 
    (Summer at the time) 
    I almost fell to the floor at this point!!! So **** off! 
    I explained they're orthopaedic boots.

    She went to tell me there's no cure for cp! 
     I put in a complaint after I'd left. 
    Only for her to call me and appologise and ask why I didn't say anything to her at the time! I'm disgusted in how it's been handled. 

    I did get the obligatory 6wk physio, now everything hurts again and I'm waiting for the Dr to call so I can be referred again! I don't have to tell you guys on the on going cycle that never ends! 

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  • Sandy_123
    Sandy_123 Scope Member Posts: 51,906 Disability Gamechanger
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    Hi @sezsixx sorry you had to put up with that from your physio, did you get any out come from the complaint?  
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    That's terrible to hear @sezsixx well done for putting in a complaint. Clearly this physio wasn't that knowledgeable about CP at all! 

    Let us know if anything comes of it, and I hope your next referral is more positive and understanding. At the very least, hopefully the previous physio has taken the time to learn a bit more about CP, you never know.
    Online Community Coordinator
    Scope

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

    Want to give us feedback? Complete our feedback form now.
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  • sezsixx
    sezsixx Community member Posts: 7 Connected
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    Hi, 
    I did get a call from the manager, but he wasn't much better! 

    He thought it was a language barrier as her first language is not English! Erm.... 
    Honestly! 
    I told him it was highly inappropriate that she should phone me after I'd complained about her and his answer was, 'well, she wanted to" 
    🙄 

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  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    Hiya @sezsixx,
    My Cerebral Palsy is quadriplegic, but I can totally relate to so much of what you’re saying. I have my first appointment with an NHS physiotherapist in a few weeks and I’m a little bit apprehensive, too. I turn 25 in April and I know that my mobility is likely to become more limited as time passes. It’s not easy but you’re not alone! I invested in a foot spa over the holidays and it has been WONDERFUL, so I’d definitely recommend that, if you can. I have a weighted blanket, which helps a lot, too.

    At least we’re in this together, hey?
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
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  • edward61R
    edward61R CP Network Posts: 7 Listener
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    aging with cerebral palsy can be a night mare to deal with the my complex it  is the more diffcuit it to make  health service understand
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