What do you wish they knew about CP? — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

What do you wish they knew about CP?

Richard_Scope
Richard_Scope Posts: 3,115

Scope community team

We all went to school right? Maybe even went to clubs like Scouts. Looking back what do you wish they knew and understood about your CP?
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. 
«13

Comments

  • roseteapot
    roseteapot Member Posts: 8 Connected
    that its my muscles and not so much my brain that was affected.In school becuase i was labled as special needs my teachers treated me like a lost cause.I recall wanting to learn to play the piano.But told to play the xylaphone instead becuase it would be easier to learn.
  • littlemissinnocent
    littlemissinnocent Member Posts: 13 Connected
    I think the main thing I would say is I would have liked to have known more about the affects of CP as you get older. I assumed, as I am sure others did that what I could do at the age of 4 I would always be able to do. I’m not saying I would have done anything differently though, I probably wouldn’t to be fair!
  • georgebear
    georgebear Member Posts: 1 Listener
    How much is controls your life and how it can affect how others are with u 
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Thanks @georgebear
    Welcome to our community.
    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. 
  • littleruthie123
    littleruthie123 Member Posts: 490 Pioneering
    Dident have a clue about chronic pain .always had empathy with people though as worked in a pharmacy which I loved .i don't think you can truly no until it happens too you ,and it changes absolutely everything ,your relationships,your outlook,your goals ,.i took my good Heath for granted also 
  • littleruthie123
    littleruthie123 Member Posts: 490 Pioneering
    Oops sorry wrong thread .thought it was chronic pain doh !
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    That often it doesnt stop you doing things you want,it depends entirely on how each person is affected-my son talked about learning to drive- and naturally i was worried- but he was allowed a driving licence,no restrictions,and although it took him a bit longer to learn,hes now been driving 6mths,at age 19,he loves it and im so very proud of what hes acheived ! It also means his younger brother,whose only just been diagnosed with cp at 15 can see that you can acheive things its not just doom&gloom.
  • DavidOnline
    DavidOnline Member Posts: 34 Courageous
    In my life, no medical expert has ever told me what cerebral palsy is, what the symptoms are and how to manage it. Even when I closely described my symptoms during the four years of tests which I had, nobody said, well that is what you would expect with CP, so I did not particularly identify them with CP, but I have come to understand that they are connected. Nor have I ever met anybody with a similar condition to mine. At 63 I'm only just beginning to connect with what it means.
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    edited May 2018
    Hi @northwestmum2
    Thanks for your post and I agree, it certainly doesn't need to be doom and gloom! How have your sons managed through there schooling? Is there anything that you wished the schools understood about the effects of CP?
    So glad you have joined our community!
    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: 3,115

    Scope community team

    Hello @DavidOnline
    Good to speak with you. I'm sorry to read that you have had such difficulties in getting a definite diagnosis. Have you had symptoms all of your life?
    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 Member Posts: 34 Courageous
    edited May 2018
    Thank you for asking. Yes I have. I had the basic original symptoms described below and then complications arising from uneven wear and tear on bodily tissues. This is why I think there should be more support for adults with CP. I have an appointment with my new GP tomorrow and she asked me to write down my story. With your permission, here it is:

    I was born one month early in a health clinic with a forceps delivery in December 1954. My mother had had three or four miscarriages previously and for this pregnancy was advised to lie on her back for two months before the due date. After birth I was removed from her and taken upstairs, I was later told, and did not see her for two weeks.

    I was late sitting up and walking. A paediatrician diagnosed cerebral palsy. My mother ignored the advice that I was to wear leg irons, which was the treatment at the time, and sent me to have weekly physiotherapy sessions at the Children's Hospital in Nottingham. These continued until I was about 10. I was encouraged to exercise and make an effort and in time learned how to cycle and swim and play tennis.

    However I suffered from involuntary muscle movements, poor coordination, clumsiness, and these were particularly focussed on the neck and shoulders. I also had poor hearing (although it has not deteriorated much with age I now use a hearing aid) and shortsightedness (this has also not deteriorated much with age), and asthma/. I suffered from a lot of early childhood diseases.

    As a child, particularly in secondary school, I was picked on a lot and this added to stress and probably contributed to the symptoms. I suffered from periods of intense back, neck and shoulder pain (inflammation). During this period, in my 20s and early 30s, I repressed knowledge of my cerebral palsy. When I was 27 I woke up one day unable to lift my arms. This was due to intense inflammation in the neck and shoulders and X-rays resulted in a diagnosis of non-ankylosing spondylosis and lordosis. NSAIDs were used to treat it.

    In the following years I experienced these occasional attacks of inflammation, some more severe than others. In the 1990s I developed carpal tunnel syndrome and had operations, first in my right arm and then in my left arm. I was provided with assistive technology including a special office chair, a Wacom tablet and voice recognition software to minimise the use of keyboard and mouse. My tinnitus worsened and has continued to this day, particularly in the right ear.

    A particularly severe attack of inflammation came between Christmas and New Year in 2003, during which period I could not sit down for several days; I could either stand or lie down. Following this I began to notice that I could not move my right leg properly. It appears that the motor nerve operating muscles down the front of the leg had been severed perhaps between the second and third vertebrae. I have copies of the scans. Four years of tests followed to identify the cause which was never formally decided upon by experts. However my feeling is that the inflammation cut the nerve connection. At one point a locum consultant wanted to operate on my neck and replace vertebrae with metal tubes but fortunately this was averted.

    Since then I can no longer run or even walk at a normal pace and my balance has been affected. However I can still ride a bike, which is easier than walking because the right leg has no choice: the pedal pushes it up and it pushes down.

    I am clumsy, have accidents, and bump into things and trip over easily nowadays. Recently this resulted in internal bruising and bleeding.

    The act of trying to do something properly, such as carry a mug of hot tea, guarantees that I will spill it, because the muscles tense up and spasm. The more I try to control it the less possible it becomes. What helps are Meloxicam, relaxation exercises, Tai Chi, chi gung, stretching, yoga, but balancing is a problem particularly on my right leg.


  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Thanks, @DavidOnline, so the issue is that your mother ignored the diagnosis and recommended treatment at the time.
    From what you have written I can see that you are doing all you can to keep active. When you see your new G.P. I would ask them for a referral to a physiotherapist with a view to getting access to hydrotherapy treatment.

    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 Member Posts: 55 Courageous
    Hi.sorry if i wasnt clear- its my sons who have cp- but though they both had it from birth(very prem  babies)the hospital knew at birth  but didnt TELL me the older one had it till 5yrs- (they mentioned it only in a routine appt for his prem baby brother!)and youngest has only been diagnosed recently  because i noticed he was walking in the same way as his brother.! School just assumed youngest was lazy i think.even though he was clearly struggling and had poor motor skills.older one left infant school still unable to read at 7- only really got help at junior school& secondary school didnt treat him any different to other kids,but didnt give him any extra help either.College is where hes had real help with any problems hes had with learning,or exams etc.
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    To @Davidonline-it may be a good idea to visit your gp and ask for a refferal to a neurologist?- even at your stage of life its not too late to see a consultant,and see exactly what your diagnosis is and how your prognosis effects you personally.
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @northwestmum2
    You were clear! Thanks for sharing that with me. Do you think the schools were not equipped to help your sons? As you mentioned the school thought your younger son was lazy.

    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 Member Posts: 55 Courageous
    Mainstream Schools dont seem to know much about cp- one of staff at my sons school who 'deals with' kids medical problems etc actually asked me what is was! They seem to know more about ADHD but if your child hasnt got that they dont seem to know what to do for them- more information taken into schools about cp is whats needed i think.
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Thanks! That is what I'm going to try to do. All of your experiences are fantastically useful and very much appreciated @northwestmum2 :)
    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 Member Posts: 55 Courageous
    Yes i believe schools are not well enough equipped on information on cp and how it effects different people who have cp,in a whole range of degrees of how they are effected-from very mildly to more severe;and the whole range inbetween,that each person is affected differently(even if very similar, like my sons)and that each person will cope differently.
  • DavidOnline
    DavidOnline Member Posts: 34 Courageous
    @Richard_ScopeGood idea, thank you, will let you know what transpires. 
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    Also more information is needed in general about cp and aging- which also is very personal to each person with cp- some have a type which will not change or become worse just due to age,but can show changes due to muscles(walking etc)but not changes in the brain.Each person is different with how theyre affected by cp. 

Brightness

Complete our feedback form and tell us how we can make the community better.