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Advice on books, support groups

Sam_ToucanSam_Toucan Member Posts: 25 Connected
edited May 2014 in Cerebral Palsy
Hi forum, was wondering if anyone could recommend some good reading, specifically looking at - dummies guide to spasticity, how the muscles work, stretches (with pictures) and other techniques. The physio has shown us quite a bit and it's already getting hard to remember it all!

Also anything on development of motor skills, and about general coping as a parent of a disabled child.

Finally, I'm looking to connect with parents in a similar situation, can anyone give advice on how to find them? We've got 4 month old twins, one with CP, and live in South London.

Sam
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Replies

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi hon

    I'm not in London, I'm in Burgess Hill near(ish) Brighton but I also have twins (boy/girl, almost 3) one with quad CP and one not. I'd love to chat with you!

    Books:
    The Cerebral Palsy Handbook by Marion Stanton
    Handling The Young child With Cerebral Palsy At Home - Nancie R Finnie
    Teaching Motor skills To Children With Cerebral Palsy and Similar Movement disorders by Seiglinde Martin.

    Marion Stanton's book is a good all-rounder on all aspects of life. Finnie's book is great for ideas for home and equipment you might find useful (I LOVE this book - I got it in a second hand bookshop but its REALLY useful) and the Martin one is broken into sections on the different aspects of movement (head control, tummy time, sitting, getting up and crawling) so you can dip into the appropriate bit. I use all 3 a lot.

    Looking forward to speaking to you soon.

    Maria xxx
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  • Sam_ToucanSam_Toucan Member Posts: 25 Connected
    Hi Maria,

    Yes it would be good to have a chat, are we able to post personal details on this site? if so, drop me an email on (removed by forum moderator) I notice that there is no private message option (at least that I can see).

    Thanks for the advice on books, now it's time for some shopping!

    Sam
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  • mollymoobarnesmollymoobarnes Member Posts: 107
    Its rubbish but there is no facility for swapping details on here. I'm on Facebook - Maria Barnes (lives in Burgess Hill). Send me a message on there (when you have time - ha ha ha......)

    M xxx
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  • Sam_ToucanSam_Toucan Member Posts: 25 Connected
    Hi Maria,

    I did a search on Facebook but couldn't find you. Are you Living in Burgess Hill, or hometown Burgess Hill? Or perhaps you have hidden your details from search?

    Sam
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  • mollymoobarnesmollymoobarnes Member Posts: 107
    Doh! For some reason I appear to be living in Brighton on Facebook... Picture is me with scraped back hair and red lippy and a black shawl (I sound like a witch... I'm not, honest!)

    Maria xx
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  • Toby1Toby1 Member Posts: 11
    Hi. I don't have twins but have a baby the same age with very similar problems. He has spastic cp in all 4 limbs but I think he is likely to be diagnosed with diplegia. Like you I find it very lonely not having anyone who understands. I know this post is not too recent so hope you recieve it. I am not on facebook unfortunately so dont know any other way to get in touch.

    Tracey x
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