Cerebral Palsy
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Managing emerging symptoms of cerebral palsy during later life.

AndMacAndMac Member Posts: 27 Pioneering
edited June 2018 in Cerebral Palsy
This is something I'm extremely interested in.

There doesn't seem to be a related post. There is so little information available on ageing with CP . Essentially, I feel, it's due to the fact that previously, so many of us didn't survive until later life. I survived a traumatic premature early birth, because three month before I was born, in May 1958, an incubator was installed in the hospital where I was born. 

. I'm 60, and have monoplegic CP (left leg)  I've been generally healthy other than this for most of my  life, but recently,  I'm managing various health issues, and working out what is due to the CP,  and what isn't,  is fun... Not.

Thirty years ago, I asked to see an orthopedic specialist as I wanted to be pro-active, and understand what would happen to me as I got older.with CP.

The response: 'I don't know what you are doing here. You will have arthritis by the time you are 40, what else do you need to know? Stop wasting my time.'

(He was an Army doctor, as I was living in a garrison town. Those with any experience of military doctors will know that this is, or was, typical of their bedside manner. I had a lot of that...)

Thanks to an extensive self-administered exercise programme, 40 minutes every morning to get me moving, I was about 45 before arthritis really bit me. I developed tendonitis following a bout of cellulitis and couldn't exercise, and arthritis struck.

Now I have severe arthritis in my hip, and I'm managing contractures  in my CP leg, as well, which I'd only experienced during childbirth, previously, until a few years ago.

Nobody seems to have a clue about how to help me, other than being prescribed Baclofen- after I had read about it in a search for information,

I'm hoping to get a physiotherapist who understands CP, but it hasn't happened yet.

I feel that part of the problem is that being able to articulate your needs,  and having CP,  are still seen as being mutually exclusive, Not every CP patient has an intellectual impairment that prevents effective communication, but even doctors don't seem to grasp this.
The CP gets overlooked, as a possible cause. Professionals forget I have CP too.

I reported my first experience of nocturnal leg contractures to my doc years ago, and was advised on treating cramp.

Just because I'm seen as an atypical CP patient doesn't mean I won't have the symptoms, even if they haven't surfaced before.

Thoughts? Any common experiences?

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @AndMac
    Great to meet you and thank you for your post.
    The main issue that I have encountered is that I have found the doctors have been very quick to blame the symptoms that I present with on my CP. I agree that it is not fun trying to work out whether changes that you are experiencing are directly linked to Cerebral Palsy.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • AndMacAndMac Member Posts: 27 Pioneering
    Hi @AndMac
    Great to meet you and thank you for your post.
    The main issue that I have encountered is that I have found the doctors have been very quick to blame the symptoms that I present with on my CP. I agree that it is not fun trying to work out whether changes that you are experiencing are directly linked to Cerebral Palsy.
    Hello Richard! That's interesting, as it was the reverse of my experience,

    The CP symptom of contracture was overlooked.in favour of cramp, and as a result it got worse, as it never dawned on me what was happening.

    If you've had cramp before, a contracture is  just a bad cramp, until it's blindingly obvious,  from the fact that you need both arms pressing down at full power to straighten your leg, that it isn't. Then the penny drops...

    Similarly, in childbirth (my giving birth x 2) it was explained as bog-standard cramp, although I now know it to have been a contracture (adductor muscles), rather than cramping. 

    Either way, the essence is that we aren't getting quite the service we require to meet our needs. Which isn't surprising!
  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @AndMac
    Yes, I can certainly agree that there is no consistency of service. I think because my CP is very visible it is the 'go to' for doctors. Anecdotally, this has been the case for other people too.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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