Hi, my name is kerrysCP! I’m 25 and I have Spastic diplegia Cerebral Palsy

kerrysCP
kerrysCP Online Community Member Posts: 1 Listener
edited January 2023 in Cerebral Palsy Network
Hi, I’m 25 and I have Spastic diplegia Cerebral Palsy. It was always relatively mild growing up. Walked unaided and I didn’t need a lot of support with anything. 

Very suddenly I started to experience pain through my right leg and started to walk with a limp. I started to use a wheelchair 3 years ago  because of the pain.


I was still walking round my house and using the stairs multiple times a day. I would still do my washing, washing dishes  and hanging clothes up 

I’m no longer walking.

My question is could of me using the wheelchair caused me to deteriorate or could I have deteriorated anyway? 

Has anyone had a similar experience to me? 

Comments

  • poppy123456
    poppy123456 Online Community Member Posts: 64,463 Championing
    We are not medical professionals so won't be able to give you any medical advice because it's against the rules of the forum.
    If you have concerns with your health condition then you should speak to your GP or any other medical professional involved with your conditions.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @kerrysCP

    Although Poppy is correct we cannot give medical advice, I've popped your post into our Cerebral Palsy section of the forum, to see if anyone else has had a similar issue or in case you had any other queries :)

    Do you see just your GP or are you under an Occupational Therapist?  
  • Richard_Scope
    Richard_Scope Posts: 3,793 Cerebral Palsy Network
    Hi @kerrysCP

    I'm sorry to read of your situation and increased pain.

    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 you your G.P. (telephone appointments will work too) and talk to them about 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 to UCLH Cerebral Palsy Service. You may also want to consider a referral to the Bobath Adult CP review service that was created with the support of Scope.

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