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What happens to Cerebral Palsy when you age?

Chloe_TearChloe_Tear Member Posts: 16 Courageous
edited May 2018 in Guest blogs

My name is Chloe Tear, I am 20 years old and am studying Psychology and Child Development. I have mild Cerebral Palsy that affects my legs and left arm, as well as being registered as partially sighted. In my free time I am a blogger and freelance writer, and have written my blog, ‘Life as a Cerebral Palsy Student’ for the last 5 years.

What do you see when you look at me? Do you see a young woman who is at university and having fun with her family and friends? Or do you see an old woman who can be hunched over with a walking stick with eyesight that’s decreasing way beyond her years?

headshot of a young woman with short brown hair and glasses wearing a stripy top and with a street of houses in the background

I hope it was the former option, yet I am likely to be the first to joke at how much of an ‘old woman’ I can be. Laughing about certain aspects of my disability may seem criminal to some. However, making light of a situation can encourage a more open outlook and make things more pleasant for yourself. At least you could call me a stylish old woman with a bright yellow stick, with yellow being 'the colour' at the moment. Although, I really don't help myself, if I look like I've stepped out of the 1950's then I'd consider that a success! Even if there is just a hint of vintage, I can't see my fashion sense changing any time soon!

I have used a walking stick for about 4 years now, but I wish I had started sooner. It really helps to alleviate pain in my hips and knees, but also can act a bit like a security blanket if I trip and nearly fall! Nonetheless, it is my stick that has made me ‘young’ again, allowing me to walk further and manage chronic pain symptoms.

All joking aside, what happens to Cerebral Palsy when you age?

I know 20 years old is not a feat, especially with the ageing population, but Cerebral Palsy already has a way of making you notice you’re getting a little older. We walk in a way which can only be described as disjointed and wobbly, something our joints really do not appreciate! I have found that even in the past year my joints crack a lot more, they ache more on an evening and seize up as a result of pretty ordinary things. Muscle spasms have also become a lot more prominent in my daily life. I have started taking Baclofen again, which is a muscle relaxant: without this medication there is a drastic difference in the way my muscles behave. Even with the medication they can act like a child going through the ‘terrible two’ phase of life.

Many may associate deteriorating eyesight with something else that comes with age. I am not saying everyone who has Cerebral Palsy will become partially sighted- far from it! But for me, my age, even a matter of years, has led to this. As a young woman it can be strange when things happen to your body which may be associated with ageing. You can feel trapped in an older body, but also determined to ‘beat’ what is happening and continue regardless. I just want you to know that people can have achy creaky joints and can be partially sighted and be 20 years old. An ‘old’ body is not reserved for pensioners; busy university students sometimes qualify too.

full length photo of a young woman with short brown hair and classes with a cane and wearing leg splints dressed in a blue and white stripy top and bright red skirt

On the other hand, age gives you experience, even if it is just 20 years, and experience leads to knowledge. Although I am still at university, my graduation is not far away. I feel I have the knowledge in how to pursue things in the future as my CP continues to ‘age’, but I am still young. Over the years I have had to change expectations of what I believe is possible- and this is coming from someone who is stubborn in the goal but flexible in the method. Over the years I have learnt how to manage certain aspects of my condition, whether that is pain, fatigue, choosing mobility aid or staying upright!

What do you see when you look at me? I hope you see Chloe.

What do you think of Chloe’s story? Can you relate to her experiences of CP?

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Great post, thanks for sharing Chloe!
    Scope
    Senior online community officer
  • Carrie38Carrie38 Member Posts: 40 Connected
    Make the most of what mobility you have do your physio if you have it. And follow your dreams x
  • SarahfSarahf Member Posts: 4 Listener
    I’m really finding our debate on ageing interesting.  I know of an emoiment paediatric neurologist in London all the families I helped as a Paediatric OT thought he was amazing.  He is based at Evilina and I will drop him a line and ask him if he knows of any studies that have been carried out amongst high functioning independent souls such as ourselves.  I used to write medico legal reports for children who sustained cp at birth and we had endless debates about the pace of ageing in relation to anticipation of life expectancy.  The difficulties with those born in the 70s is that children were often discharged from the care of neurologists quite early particularly if they achieved independent mobility and retained enough cognition to attend mainstream school after 1978 when the Warnock report was published.  The emphasis on evidence based practice was not as explicit across the health professions as it is now and so children were not followed up
    paticularly if they did not need surgery on spine hips or tendon lengthening.   Mrs Bobath was just Begining her research then too.  I wonder if there are enough of us that want to know about how ageing will affect us as time goes on whether we could approach neurologists at Queens Square, St Georges or even Southampton.  We might be able to gather a sample of 100 people and suggest to anyone that was interested to Commission a study.  I have been a participant and a researcher and would find the process and findings fascinating.  Perhaps this might get read by the Research Office af Scope who could back us in our quest to know more and Commission a study.  We’ve got nothing to loose if it’s going to prepare all the youngsters coming after us?
  • Chloe_TearChloe_Tear Member Posts: 16 Courageous
    Thank you for all the comments, and @Sarahf this does sound amazing! There really does need to be more information out there on the topic!
  • BeccyJBeccyJ Member Posts: 59 Courageous
    edited April 2018
    "Perhaps this might get read by the Research Office af Scope who could back us in our quest to know more and Commission a study.  We’ve got nothing to loose if it’s going to prepare all the youngsters coming after us?"

    @Sarahf

    I thought you'd be interested to know that I first asked Scope if this was something they would be prepared to get on board with last year.  It led to an interesting discussion with other forum members like @emmaliv and @Bubbles83 and @forgoodnesssake

    This led to further discussions involving @quinrah who is a Director at Scope.

    As things stand it appears they are unwilling to support us with this as it is an issue that doesn't fit with Scope's social agenda and they don't design services to support specific disabilities or get involved in medical campaigns.

    We queried this because Scope's charitable objectives, as registered with the Charity Commission, state that it exists for "especially those with Cerebral Palsy".

    Ultimately, this led to a meeting with Mark Atkinson CEO.  

    You can read about it all here.

    https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp#latest

    @quinrah

    Is there anything you'd like to add, in view of comments made by @Sarahf and others here and the other regent blogs?
  • Bubbles83Bubbles83 Member Posts: 28 Connected
     well done @BeccyJ i still feel we need to raise awareness if nothing else, so many people are still in the dark about the long term implications of ageing with CP. what better way to get an insight then to read the stories of those who are living it.....and may i say doing a damn good job! :)
  • nmcmurdonmcmurdo Member Posts: 6 Connected
    Congratulations on your excellent post.

    As you head it about what happens when you age, I thought this may be of interest. Please delete if not.

     I am 58,  married with two children at University. My cerebral Palsy effects my right side i.e limited use uf right arm and hand plus shortening of my right leg.
    I worked for 34 year in an accounts based environment, but was made redundant 7 years ago.  I haven't worked since.  About a year prior to that Arachnoiditis developed, mainly in my left leg, making it weaker than my right, resulting in walking and standing hard work.
    My Neurologist gave up on me over a year ago, telling me to start using a wheelchair.   Fortunately I go to the gym,go to RDA horse Riding and swim to keep my legs going.
    I think I could get by getting older with CP but it is the Archnoiditis that is a b....r!


  • SarahfSarahf Member Posts: 4 Listener
    Well since there is so much nterest in this topic, I will write to the neurologist I know of and see if he can tell me if anyone would be interested in doing a study to satisfy our collective curiosity in the subject.  In Scopes defence it is important for them to represent as many perspectives as they can but also to be frank and open when a request for information falls outside their remit.  On a humourous note it’s not too usual that people want to scrutinise what getting old really looks like!
  • RhabAdnamRhabAdnam Member Posts: 8 Listener
    @Sarahf that really chimes with me. I was offered tendon lengthening when I was 10. On advice I turned it down. I have never quite known what my status was. My mother never mentioned it. I do know CP and ataxia is mentioned in my notes somewhere. I have got by with my funny swaggering walk. It hurts though. I have often wondered what would happen down the line.
  • BillBill Member Posts: 32 Courageous
    Congratulations on the excellent posts above.
    I am 62 with mild cp, and am feeling 'old', despite reading that 90 is considered a 'normal' life expectancy now. I achieved independence, attended mainstream schooling and university (see @Sarahf) and worked (with computers) until I was made redundant 8 years ago. Please consider me if you seek any more input from 'oldies'.
  • nmcmurdonmcmurdo Member Posts: 6 Connected
    You sound similar to myself Bill, working for a lengthy time before being made redundant.  CP and ageing do not go well together!
  • BillBill Member Posts: 32 Courageous
    You're right, @nmcmurdo . Certainly, if you ever feel "I'm not going to generate income again", for whatever reason (including CP), it's common and easy to feel aged and 'old'.

  • Carrie38Carrie38 Member Posts: 40 Connected
    I was ill.health retired at 37 it's the hardest thing I had to accept old before my time . 
  • Chloe_TearChloe_Tear Member Posts: 16 Courageous
    nmcmurdo said:
    Congratulations on your excellent post.

    As you head it about what happens when you age, I thought this may be of interest. Please delete if not.

     I am 58,  married with two children at University. My cerebral Palsy effects my right side i.e limited use uf right arm and hand plus shortening of my right leg.
    I worked for 34 year in an accounts based environment, but was made redundant 7 years ago.  I haven't worked since.  About a year prior to that Arachnoiditis developed, mainly in my left leg, making it weaker than my right, resulting in walking and standing hard work.
    My Neurologist gave up on me over a year ago, telling me to start using a wheelchair.   Fortunately I go to the gym,go to RDA horse Riding and swim to keep my legs going.
    I think I could get by getting older with CP but it is the Archnoiditis that is a b....r!


    Sorry to hear this! Thank you for your comments though!
  • Chloe_TearChloe_Tear Member Posts: 16 Courageous
    @RhabAdnam I know it is strange that actually don't know what happens down the line!
  • DavidOnlineDavidOnline Member Posts: 26 Courageous
    I have just joined this community and I'm so pleased to read this post and the comments. I have also just posted in the discussion myself an item about aging, I am 63 and have never met anybody else like me with mild CP, which is why I have signed up. I wonder if there is anybody living in south wales with it who would like to meet and share experiences.
    If somebody is doing research on CP and ageing I would be happy to take part and answer any questions in the hope of getting some answers as well!
  • BillBill Member Posts: 32 Courageous
    Hello david, and thanks for your comment. Unfortunately CP does not seem to change much after childhood and so it is very difficult to find much on adults with CP. That said, there is some info on Scope website, and there is also a useful group at Queens Square. Happy hunting!
  • BillBill Member Posts: 32 Courageous

     

    Dear all,

    I was rather expecting to be gently taken to task for my offering of those two sources of  information about CP in adults. However nothing happened and so, in my temporary role as a ‘guru’, I point all towards the American ‘All of Us” research program. I have today received an email about this state-side program and will forward it if anyone is interested.

  • DavidOnlineDavidOnline Member Posts: 26 Courageous
    Hi Bill, I can't see how to PM you my email address on this site for you to send the email. Any ideas?
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