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What do you wish they knew about CP?

Richard_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy

Replies

  • roseteapotroseteapot Posts: 5Member Listener
    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.
  • littlemissinnocentlittlemissinnocent Posts: 13Member 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!
  • georgebeargeorgebear Posts: 1Member Listener
    How much is controls your life and how it can affect how others are with u 
  • Richard_ScopeRichard_Scope Posts: 1,418Administrator Scope community team
    Thanks @georgebear ;
    Welcome to our community.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • littleruthie123littleruthie123 Posts: 460Member 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 
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Oops sorry wrong thread .thought it was chronic pain doh !
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • DavidOnlineDavidOnline Posts: 21Member Connected
    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_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy
  • Richard_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy
  • DavidOnlineDavidOnline Posts: 21Member Connected
    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_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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_ScopeRichard_Scope Posts: 1,418Administrator 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 - Cerebral Palsy
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • DavidOnlineDavidOnline Posts: 21Member Connected
    @Richard_ScopeGood idea, thank you, will let you know what transpires. 
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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. 
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • AnniAnni Posts: 13Member Connected
    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.
  • AnniAnni Posts: 13Member Connected
    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_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • DylanEvansDylanEvans Posts: 21Member 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.
  • DylanEvansDylanEvans Posts: 21Member 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!
  • AnniAnni Posts: 13Member Connected
    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.
  • AnniAnni Posts: 13Member Connected
    @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_ScopeRichard_Scope Posts: 1,418Administrator Scope community team
    Hi @Anni and @DylanEvans ;
    Are you referring to the CP factsheet?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • DavidOnlineDavidOnline Posts: 21Member Connected
    @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?
  • lozzer25lozzer25 Posts: 73Member 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
  • littlemissinnocentlittlemissinnocent Posts: 13Member 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_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • Richard_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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.
  • northwestmum2northwestmum2 Posts: 40Member Connected
    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!
  • DavidOnlineDavidOnline Posts: 21Member Connected
    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.
  • DavidOnlineDavidOnline Posts: 21Member Connected
    @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_girlthe_velvet_girl Posts: 101Member 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.
  • Richard_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • RSW665RSW665 Posts: 14Member 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_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • ZeezeeZeezee Posts: 80Member 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_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • ZeezeeZeezee Posts: 80Member 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_ScopeRichard_Scope Posts: 1,418Administrator Scope community team
    @Zeezee ;
    That is very upsetting! Congratulations to you for calmly dealing with that situation.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • auntielisaauntielisa Posts: 1Member 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_ScopeRichard_Scope Posts: 1,418Administrator Scope 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 - Cerebral Palsy
  • Lucysam25Lucysam25 Posts: 35Member 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 
  • MonkeyFaceMonkeyFace Posts: 8Member 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

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