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Managing emerging symptoms of cerebral palsy during later life.
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?