Aging with mild cerebral palsy

dblg0503
dblg0503 Online Community Member Posts: 5 Listener
in Cerebral Palsy Network

Hello

I have a mild cerebral palsy and I am noticing that it started to get worst, especially after I turned 40. It seems like simple walking takes now so much energy, I feel exhausted. And constant pain. Visited neurologist in February, he said that disabled people starting to age at lower point. But he did not give me clear view what to expect in the future and unknowing gives me a lot of anxiety. Am I going to end up in the wheelchair?

I would be grateful to know other people's experience about aging with mild cerebral palsy.
Are you continue to work? I am working part time and I feel very tired. I was thinking to stop working for a year, get some rest and try to work again. But I am worry that I will not find new job. I tried to look for a flexible job from home, but no-one replies if I mention mobility issues in my CV. And I can not hide it anymore.

Thanks.

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network

    Hi @dbig0503

    You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.    

    We 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 your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And get a referral to a neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer to UCLH Cerebral Palsy Service.

    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.

      

  • JudithL
    JudithL Online Community Member Posts: 82 Contributor

    I also have mild CP, it mostly affects my right arm, so mobility is less of an issue for me, though I notice I'm more inclined to stumble or even fall as I did as a child. But I would definitely say that it gets harder with age. I also have more pain (though I'm starting from a very low threshold on that). A lot of things are harder to do, and things I did with no thought (it seemed) at all now need conscious thought and it all feels much more tiring than it was. I guess this is an inevitable part of aging. I've found seeing a neuro-physio has helped with exercise and support. I also find exercise helpful, especially swimming. I have to be very consistent about doing it regularly now whereas in the past I could keep everything ticking over by doing it from time to time.

  • StoneyShadow47
    StoneyShadow47 Scope Member Posts: 8 Listener

    your certainly not alone !
    Do you have a work couch UC (at universal credit) or reprinting yourself ?

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