Cerebral Palsy
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support groups

brianwbrianw Member Posts: 11 Connected
Hi, are there support groups for adults living with CP in Swindon, Wilts?

Replies

  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    edited February 2020
    Hi @brianw
    Here is the Wiltshire Services Information page 
    I am having trouble finding anything in Swindon itself. Is there anything that you need support with? Perhaps I could help.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • brianwbrianw Member Posts: 11 Connected
    Hi, thank you. I am looking for an adult support group for people with cerebral palsy. I have hemiplegia of my left side, mild, but has had a lifelong effect on my decision making process
  • brianwbrianw Member Posts: 11 Connected
    I reckon it would be very good to have a space to share and be with others who understand 

  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    edited February 2020
    Hi @brianw
    I have quad CP and I love to talk!
    Could you explain to me how you hemiplegia has had an effect on your decision making? I would be interested to hear about your experiences.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • brianwbrianw Member Posts: 11 Connected
    Hi Richard, thanks. I have hidden my disability my entire life. I learned to walk without a limp, and to hold my arm down whilst walking. When I am tired or emotional these characteristics return. I chose a job that was admin based, I rarely socialise without having a distinct role.
    In childhood my left arm was descibed as 'lazy'. I spent a few years having physiotherapy and speech therapy. I had my legs in plaster from age 1-3 then calipers 3-5. My physical disability was dismissed. doctors have told me not to describe myself as having cp due to prejudice.

  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    edited February 2020
    Can I ask how old you are @brianw? What the doctors advised you and your parents was completely wrong but probably meant to help you but had inadvertently made you hide, which must be exhausting both physically and mentally? Cerebral Palsy is nothing to be ashamed of. What do you mean by not socialising without having a distinct role?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • brianwbrianw Member Posts: 11 Connected
    Hi Richard, 
    I am 55.
    My parents were embarrassed by my problems. Denied them
    I had to work hard to get to 'normal' but I did.ok
    I have a role to fulfill in social settings, not just being 'myself'. 
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    My dad struggled too, with my disability and the fact that I would never be a footballer like he was. 

    I would focus on your life and what you want from it. You have no reason to carry your parent's shame or embarrassment!. What role do you think you have to fulfil in social settings? 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • brianwbrianw Member Posts: 11 Connected
    Hi Richard, thanks for the encouragement. 
    I am pleased with what I have achieved. 
    In many ways I have exceeded my expectations 
    I am a  Minister of Religion now so I am always 'on duty' in any public situation. And thats ok.
    But I have a feeling that I I am broken. It would be beneficial with others who I can just 'be';. Does that make sense?
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    It makes complete sense but I guess what I'm saying is you can just 'be'. Wow, you are an Ordained Minister? That is an achievement. What makes you feel broken?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • brianwbrianw Member Posts: 11 Connected
    my body does not act properly.
    I feel contact with others in a support group would feed something hidden, deep in me. 
    Yeah, I am ordained in a mainstream christian church and in full-time ministry. 



  • brianwbrianw Member Posts: 11 Connected
    I even applied for a PIP so I could get a medical assessment.
    I got no points!
    And yet, I know my left side is limited, 
    Its like something which is integral  to me is not seen,
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    Have you ever considered some talking therapy, to address how you see yourself? Talking with a complete stranger that is trained can be really beneficial.
    Do you think that you are struggling to accept yourself? And that is the deeper issue that you are trying to reach?
    In terms of PIP you can apply for Mandatory Reconsideration We have lots of information about PIP that might be helpful to you.
    You are not broken. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • brianwbrianw Member Posts: 11 Connected
    HI Richard
    it was psychotherapy that made me understand the integral identity as someone living with CP. Good thought though!
    IN many ways I have exceeded my expectations for my life and am blessed.
    In that I got no points in the PIP I felt that it would be useless to contest. 
    I think what I struggle with is recognition - I have this condition that means I always had to fight harder just to reach 50%, just to be acceptable. People don't see that.
    I understand that I am not broken because I have succeeded in so many ways, it is more of an emotional truth. 
    I appreciate your time and comments. Thank you.
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    I can't relate to my CP not being visible because it clearly is in my case. however, I can relate to having to try so much harder for the same opportunities that the rest of the populous take for granted. I have always had to work harder for longer than my non-disabled counterparts.
    You are not alone @brianw I'm always around to chat things through.
    Scope
    Specialist Information Officer - Cerebral Palsy

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