I have ataxic diplegic CP. Has anyone else found their CP has worsened with age? — Scope | Disability forum
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I have ataxic diplegic CP. Has anyone else found their CP has worsened with age?

TomD_17
TomD_17 Member Posts: 6 Listener
edited September 27 in Cerebral palsy
I'm 28 years old and have ataxic diplegic Cerebral Palsy.

After the year we've all had, my CP and things that go with it seem to have caught up with me me more than they ever have; things that I didn't know could be part of my CP have also cropped up!

To be completely honest, I've never really viewed myself as 'disabled' or someone with CP or even taken part in something like this. My CP is a massive part of what makes me, me and I wouldn't changed it for the world!

It's just things seem to be harder than ever before; I've joined this in the hope of finding other late 20s-early 30s people with CP who have also noticed it seem to get worse as they've aged and just talk/share advice/tips on things to help ☺️

All the best and thanks for having me,

Tom.
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Comments

  • Tori_Scope
    Tori_Scope Posts: 6,115

    Scope community team

    Welcome to the community @TomD_17 :) Thanks for joining the community, and for telling us a bit about yourself. It's great to have you here!

    I've renamed your post and moved it into our category for discussions relating to CP so that others with a similar experience will be able to find your post more easily. I'd definitely recommend that you take a look through the category, as you're certainly not alone in your experiences. 

    I'd also like to point you towards a page on our website that talks about CP and ageing, which I hope contains some information that you may find helpful. 

    I'll also tag in our Specialist Information Officer for CP @Richard_Scope here, as I'm sure he'd be able to talk with you about your experiences of getting older and share some tips and tricks.

    Scope and CP Sport run a CP cafe, too, which I thought you might be interested in? 
    Online Community Coordinator, she/her

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  • TomD_17
    TomD_17 Member Posts: 6 Listener
    Hi Tori,

    Thanks for your response. I already have the ageing page saved as a bookmark tbh! It's helped to confirm that many of the things I'm feeling are CP-related. I'll be sure to take a look at the other links you provided 👍

    Thanks again,

    Tom
  • Richard_Scope
    Richard_Scope Posts: 2,925

    Scope community team

    edited September 30
    Hi @TomD_17

    There are things that you can do to help manage the changes in your mobility and pain. It sounds counter-intuitive, but exercise is very beneficial. Especially, low impact exercise like swimming. Any kind of movement at whatever level you can manage. 
     

    It's fantastic to meet you. You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and am a wheelchair user. Since I hit 40, I have felt the changes in my mobility and energy levels.  

    As has been mentioned us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue
     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.  There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it: 
    What Post-Impairment Syndrome Means to Me 
    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer. 
     
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • TomD_17
    TomD_17 Member Posts: 6 Listener
    Hi Richard,

    Apologies for the delayed response. If you're open to it, I'd be interested to have a chat about some of the points you've mentioned here?

    I'd offer to join the CP café but I don't think I'm quite ready for that tbh!

    Thanks again,

    Tom.
  • Richard_Scope
    Richard_Scope Posts: 2,925

    Scope community team

    Hi @TomD_17
    Very happy to have a chat about the points I mentioned. Drop me an email when it suits you or we can chat on here.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

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  • TomD_17
    TomD_17 Member Posts: 6 Listener
    Hi @Richard_Scope,

    Thanks for getting back to me. I'll drop you an email at some point today/tomorrow 👍

    Tom
  • TomD_17
    TomD_17 Member Posts: 6 Listener
    Hi @Richard_Scope,

    I emailed you a couple of days ago regarding a chat. Did you receive the this okay?

    Thanks,

    Tom
  • Richard_Scope
    Richard_Scope Posts: 2,925

    Scope community team

    Hi @TomD_17
    I have responded :)
    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. 
  • TomD_17
    TomD_17 Member Posts: 6 Listener
    Hi @Richard_Scope

    I've emailed you back. I can be free around half 12/1pm but only for half an hour?

    Thanks,
    Tom.


  • Richard_Scope
    Richard_Scope Posts: 2,925

    Scope community team

    TomD_17 said:
    Hi @Richard_Scope

    I've emailed you back. I can be free around half 12/1pm but only for half an hour?

    Thanks,
    Tom.


    Ignore my email from earlier. I will contact you at 12:30, today.
    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. 
  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,389 Pioneering
    Hi @TomD_17
                           How are you? Welcome to the community, it's great to have you with us. I have CP and have noticed that as I have become older, things have changed in terms of my mobility and energy levels. I have found it is important to mange things to ensure that I am getting enough rest, exercise but also doing the things that I enjoy doing. Though at times this is hard, it definitely beneficial in ensuring I am able to do the things I want too and enjoy them. Please, if you have any questions, do ask and I'm happy to try to answer if I'm able too. Thank you.

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