New to the group and just had the biggest shock! — Scope | Disability forum
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New to the group and just had the biggest shock!

swinka27
swinka27 Community member Posts: 2 Listener
edited January 2021 in Start here and say hello!
Hi everyone I am swinka27 and I joined today to get some support. I just turned 51 a few days ago. Today I got access to my medical record for the first time and I learned that I was born with Congenital Cerebral Palsy. Neither my mum nor I were ever informed about this but I have had many health problems that can now be understood.  However, the fact that I have been unaware of this diagnosis for so long is a huge shock to both me and my mum!!! Not really sure how to feel about it all. 
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Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome 

    That must have been a big shock and I'm very surprised this hadn't been discussed with you or your mum 

    We have lots of CP members here and even a meeting group and specialist advisers 

    Have a look around the site we are here to support you anyway we can 
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hello @swinka27 and welcome to our community.

    Blimey what a shock, and equally a relief to have an answer for your symptoms.  I imagine it will take some time to get your head around the diagnosis but you have definitely come to the right place for support :) 

    We have a Cerebral palsy discussion board where people share their stories which might resonate with some of your experiences.  

    While we also have a fortnightly CP online cafe where our members get together for a natter.  

    Our resident Cerebral palsy specialist information officer @Richard_Scope is a great contact should you have any particular questions, so please do let us know if there's anything you are worried about or want to know.

    It's great to meet you and hope to speak soon.
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
    Hi @swinka27
    Good to meet you.
    It must have been a huge shock for you. If you need to chat let me know. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @swinka27 and welcome :) 

    As the others have said, that must have been quite a shock to discover after all these years, I hope you're coping okay. 
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  • chiarieds
    chiarieds Community member Posts: 16,097 Disability Gamechanger
    Hi @swinka2 - & welcome to this friendly & supportive community from me too. Any time you want to chat, you'll find there's nearly always someone here to listen, so I'm pleased you've joined. :)
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  • MPowell_1991
    MPowell_1991 Community member Posts: 83 Courageous
    Wow, you must be experiencing a whole mix of emotions, but please know, you're never alone. I'm sure that we'll all gather around you should you need. Take time to process things. Much love.
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  • swinka27
    swinka27 Community member Posts: 2 Listener
    Thanks to everyone who replied and made me feel welcome. It's been two years since I posted and I have been through a lot in the meantime. Which is why it has taken me so long to respond to your kindness and support. 

     As well as the (what I now know to be) CP, I was diagnosed with Multiple Sclerosis at age 27, and after many years of it being stable and manageable, 18 months ago it progressed to the point that I am now fully dependent on my mobility scooter whenever I leave the house. This has been hard for me to deal with, mostly because it has changed the way other people see me and behave towards me. I feel so much older than I actually am, it's terribly frustrating! 

    Also, just this week I had a hearing test and discovered that I have moderate hearing loss. After talking this over with my mum, we have concluded that I have probably needed hearing aids since childhood, as I have always talked very loudly (oops!) and can remember often being scolded for ignoring people when I was a child. As one can imagine, this has reignited my consternation at not getting the help I needed as a child, but it is the lack of emotional support which I feel the most keenly. My mental health has always been good, I think, but the blows it has had to withstand over the last two years have really taken a toll on me. I don't want to keep putting this all on my mum as she is elderly and infirm herself.  I know that she feels like she failed me when I was younger, although it is my belief that, rather than that, it was the medical profession that failed both of us.

    I have reached out to my GP for help and he has referred me to a counsellor, but the waiting list is long so I shall not be holding my breath - I have too much living to do yet!
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  • Jimm_Scope
    Jimm_Scope Posts: 2,687 Scope online community team
    Hi @swinka27

    That is a lot to go through, I'm glad you've reached out for help with your GP. The waitlist is long, Scope has an advice section on Mental Health Managing mental health | Disability charity Scope UK That link should take you straight to the "Other ways of getting mental health support". There is more than just the NHS out there to help support you. 


    We are also here to chat with, we aren't counsellors, but we can be friends :) 

    I also understand how your mum feels. My mum feels like she failed me because I didn't get diagnosed with ADHD till I was well into being an adult. I tell her everything I can to dissuade that line of thinking, but I think they care so much and try to put so much on themselves to try and make it easier for us. For me it was also the medical system that failed me. I did get tested for neurodivergence, but I was not even checked for ADHD due to my, at the time, better than average school ability. That did not keep up I can tell you that!

    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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