What do you wish they knew about CP?
Options
Comments
-
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. -
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.
-
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. -
the_velvet_girl said: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.
-
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. -
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.
-
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. -
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?
-
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. -
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
-
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 courtWe 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
Categories
- All Categories
- 13K Start here and say hello!
- 6.6K Coffee lounge
- 69 Games lounge
- 385 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.2K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 768 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 586 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 737 Transport and travel
- 31.6K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 4.9K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 869 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 818 Rare, invisible, and undiagnosed conditions