What do you wish they knew about CP? - Page 2 — Scope | Disability forum
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What do you wish they knew about CP?

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  • northwestmum2
    northwestmum2 Community member Posts: 55 Courageous
    Hope it helps.also my elder son spent months attending physio last year only to be told he needs to be refferred instead to a specialist neurological physio,because of his cp,make sure you get correct one first time.
  • Anni
    Anni Community member Posts: 19 Courageous
    That just because I can walk, I’m not ‘mild’. That I’m in pain all the time. That when I use my wheelchair, I’m not faking, and when I walk, I haven’t got better. That it has stolen my entire adult life from me, it’s getting worse as I get older and I’m terrified of the future.
  • Anni
    Anni Community member Posts: 19 Courageous
    Also that I have the dyslexia-like cognitive impairment which comes with cp. That I’m not being stupid when I can’t give or take directions, or navigate to somewhere I’ve been to once a year ago.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @Anni
    Thank you for your posts. I'm sorry to read that you have had to deal with such attitudes. That is why I think it is important to try and raise as much awareness of CP as possible. Have you mostly experienced these attitudes while at school/college or university or at your place of work?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • DylanEvans
    DylanEvans Community member Posts: 25 Courageous
    @Anni Navigation, directions and generally placing myself in space are huge things for me too. The less obvious cognitive/neuro issues are honestly some of the most distressing parts of my CP on a daily basis because people just have no idea, and it really affects my ability to live life. Have you seen anyone about that sort of thing? I've never been sure what to do about it other than to just stumble through explaining it to people.
  • DylanEvans
    DylanEvans Community member Posts: 25 Courageous
    I often really wish people understood that it doesn't stop at my legs and arm not working properly. As I've said to people in the past, brain damage is a blunt instrument and I have a lot of subtle things like perception and sensory problems to go along with the obvious mobility issues. I also really wish people understood how much effort it takes not only to move my body, but to coordinate it at all, including sometimes to stop it moving!
  • Anni
    Anni Community member Posts: 19 Courageous
    edited May 2018
    @Richard_Scope. The you’re mild thing was mostly at school. The faking versus getting better is people in the street or acquaintances, the direction thing is people in my social life.
  • Anni
    Anni Community member Posts: 19 Courageous
    @DylanEvans I am on the waiting list for a one off session with a neuropsychologist at my local hospital. The hope is they might be able to give me some ideas to help cope with it. If they do, I’ll post them on here. Scope has, or used to have a really good fact sheet about this. Do you have anything @Richard_Scope ?
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @Anni and @DylanEvans
    Are you referring to the CP factsheet?
    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. 
  • DavidOnline
    DavidOnline Community member Posts: 34 Courageous
    @Richard_Scope As mentioned above I had my GP appointment today. She was very attentive and curious, she's about to retire but all she knew about CP is from her training many years ago, and that wasn't very much and she's hardly seen any CP patients. She was astonished that there is not the same level of support, research and training for CP adult patients as there is for other conditions. She referred me to the better of two physio teams, who can refer patients for MRIs etc. As for a neurologist, she says a referral would be useless as "you wait a year, then see them on a Saturday afternoon and never hear from them again"! Wonderful, no?
  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    edited May 2018
    I found out when I was 25 after several discrepancies with health professionals things overtime have got worse with me I have developed an essential tremor in my left leg which is the weakest leg as I have overcompensated with my right all my life I get tired easily can't sleep very well have personal issues which is caused by the cp I am 31 now but most days I feel like an old woman I have physio and ot but there is not much they can do as my brain as adapted to its own way I have mild spastic diplegia and upper limb dyspraxia
  • littlemissinnocent
    littlemissinnocent Community member Posts: 13 Connected
    Sorry to jump in on this thread, it may not be the right one, do my apologies if this is the case. It takes a lot for me to write on here, so thank you in advance for bearing with me. I have had a lot more problems as I have got older (I am now 35). I never really realised that cp could get worse (I know that technically this is not true, but hope you all know what I mean). I also never realised the amount of pain it was possible to experience from CP, and other issues caused from the constant strain of living with CP.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    edited June 2018
    Thanks, @lozzer25 and @littlemissinnocent your contributions to this thread are really welcome and useful. Do you think that the fatigue and associated pain is something that schools/employers should be made aware of?
    @littlemissinnocent I will include a link here to the Chronic pain discussion
    https://community.scope.org.uk/categories/chronicpain 
    There may be some tips that could help.
    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. 
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    @DavidOnline, unfortunately, your experience with the G.P. is not rare. There doesn't seem to be a wealth of knowledge about CP and how it affects adults. I have had experiences where I have spent the appointment time explaining what CP is.
    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. 
  • northwestmum2
    northwestmum2 Community member Posts: 55 Courageous
    The schools dont have a clue about getting tired easily or how much harder it is for a child/ young person to even remember things sometimes all associated with both my sons CP.colleges are a bit more clued up but still more work needs to be done,also what young people need when they get to ages where they have to choose GCSE subjects or colleges etc they need a more specialist person to help with this,also once in college maybe a specialist help in finance dept at college as it becomes a whole minefield for a  young person with a disability of any sort to try get benefit help- and the ussual financial dept or even student support dont seem to have a clue!This can cause great distress to the students and to their parents!then the students cant devote themselves to study for worrying about it.
  • northwestmum2
    northwestmum2 Community member Posts: 55 Courageous
    Yes,both my sons CP is termed 'mild' -and yet though i know it means that theyre not 'affected' by the condition as badly as some,it still does make some people (schools or benefits depts mainly)treat them as though they are hardly worth considering it as a disability- or that they will 'get better'- you have to go through the whole thing of explaining its a brain injury,it wont just get better'- also,not enough info in general,that while it also cant  'get worse' either,the effects of it can.my sons cant even grasp that one.
  • northwestmum2
    northwestmum2 Community member Posts: 55 Courageous
    And Davidonline?I really would return to gp and insist on the refferal,it really might help you,the waiting times vary by health authority,so it might not be a year,and often hospitals do make saturday appts these days as a means of reducing waiting lists im told- BUT,it doesnt mean they'l never see you again- if the consultant feels,or you do,that you would benefit from/need/ merit a return appt im sure it would be arranged!!She seems a nice lady gp,but maybe you need to insist on the refferal,not her own opinions!
  • DavidOnline
    DavidOnline Community member Posts: 34 Courageous
    Thank you @northwestmum2 – I will wait and see what the Community Musculoskeletal Assessment Treatment Service (CMATS) says (to whom I've already been referred) – they have the power to send me for further tests.
  • DavidOnline
    DavidOnline Community member Posts: 34 Courageous
    @Richard_Scope - I'm going to recommend Rosenbaum and Rosenbloom's boko on CP to every medical practitioner I meet... and take my copy along to appointments. Well worth a read. Scope should have 10 copies... do you have one there?
  • the_velvet_girl
    the_velvet_girl Community member Posts: 107 Courageous
    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.

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