What do you wish they knew about CP? - Page 3 — Scope | Disability forum
Please read our updated community house rules and community guidelines.

What do you wish they knew about CP?

13»

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @the_velvet_girl
    I hope you are well? 
    That is a very good point! We spoke about this some time ago. It's definitely one I can relate to.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • RSW665
    RSW665 Community member Posts: 14 Listener
    I wish people understood that you can't always see the affects of Cerebral Palsy immediately. this is especially true in regard to the mental anxiety Cerebral Palsy can cause you to have, having no abilty to support youself when you are trying to move around, or not feeling safe in what would appear to be a very "safe" situation. I've had experiences like these with carers because the do not understand the hidden affects of Cerebral Palsy which has sometimes led to arguments, this feels very frustrating and almost unfair.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @RSW665
    Many thanks for your post. Could you expand on the 'hidden effects'? How did these lead to arguments with carers?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Zeezee
    Zeezee Community member Posts: 78 Pioneering
    I wish people understood when I was growing up that my startle reflex is part of my CP & not because I am scared or guilty.
    I can't definitely associate with this, al the comments like"ohh she's a timid little thing" when my four year old jumps out of her skin. I wish people understood that no I do not beat my child, I am not so overbearing that my daughter is stressed and terrified of me. And yes she does get embarrassed when people make a big issue out of her overactive startle reflex. I mean come on. Occasionally people do follow my lead and just ignore it and carry on chatting to my daughter which she prefers. So yes there should be more understanding particularly from Drs.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    edited July 2018
    Hi @Zeezee
    Thanks for your post. In my experience, doctors understand very little about this particular aspect of CP. It is very frustrating indeed.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Zeezee
    Zeezee Community member Posts: 78 Pioneering
    It's really sad but true that Drs understand very little about most aspects of CP. I have even had a Dr at the walk-in centre where I took my daughter when she had tonsillitis look down his nose and kind of snort in disgust when I said my daughter had quadriplegic cp, he said that he had just seen her move her arm so she cannot possibly have quadriplegic cp. I just took a deep breath and politely explained that quadriplegic cp means that all four limbs and torso, neck/head are effected in varying degrees not that someone is paralysed in all four limbs. I know there are a huge amount of illness and disabilities but Drs need to have a working knowledge of disabilities when serving the public.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    @Zeezee
    That is very upsetting! Congratulations to you for calmly dealing with that situation.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • auntielisa
    auntielisa Community member Posts: 1 Listener
    Hi I hope I have the correct thread. I'm new to this! My neice is 4 and has CP. Having had other health problems to deal with too initially, she has recently begun to make good progress with speech and movement and has recently been issued with splints. She is due to start primary school in reception in September and I am looking for good book recommendations that will help us as a family to continue to support her the best that we can but also to help us communicate her needs to the school. I noticed there were some mention of schools and a book by Bernambaum earlier in the thread? 
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @auntlelisa
    Great to meet you and welcome to our community! One book that I have found useful is "Including Children with Cerebral Palsy in the Early Years Foundation Stage." written by Lindsay Brewis.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Lucysam25
    Lucysam25 Community member Posts: 35 Connected
     What about older people who have C P  & spine-abifida  & been diagnosed osteosteoporosis but the D W P turned you down   p i p  but had D L A Indefinitely but going through  the appeal courts  after been turned down appeal  & mandatory appeal  do they think you have recovered from what you have got i walk with a walking stick i can't walk far they said i can walk 50 meters without stopping  just waiting for the date to go to court 
  • MonkeyFace
    MonkeyFace Community member Posts: 8 Listener
    Lucysam25 said:
     What about older people who have C P  & spine-abifida  & been diagnosed osteosteoporosis but the D W P turned you down   p i p  but had D L A Indefinitely but going through  the appeal courts  after been turned down appeal  & mandatory appeal  do they think you have recovered from what you have got i walk with a walking stick i can't walk far they said i can walk 50 meters without stopping  just waiting for the date to go to court 
    We have never had to go to appeal. But...from what I understand of how things work through the NHS (etc)...if you can prove your case in an ordered and simple fashion...they will have nothing against opposing you....BECAUSE THEY ARE ALL OVER THE PLACE WITH LACK OF LOGIC!  Good luck!
    Marc

Brightness