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brianw
Community member Posts: 11 Connected
Hi, are there support groups for adults living with CP in Swindon, Wilts?
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Comments
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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.
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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 process0
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I reckon it would be very good to have a space to share and be with others who understand
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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.
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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.
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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?1
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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'.0 -
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?
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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?0 -
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?0
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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.
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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,0 -
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.
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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.0 -
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.
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