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Over 40 CP with spastic diplegia

Jill2013Jill2013 Posts: 13Member Listener
edited May 2014 in Cerebral Palsy
Hi I have just found out I have this condition. I had splints when younger but nobody explained to me that I had this. It also explains why I am having so much problems walking, tightness, tiredness etc. I also have back ache alot, is this part of the condition?
What can I do to help myself or is it best to go back to the doctors? I was last seen by the hospital possibly when I was 15 then all appointments stopped.
How do you all deal with your symptoms

Replies

  • chelskipetechelskipete Posts: 4Member
    Hi

    I'm 43 and have slight ataxic CP. Lately I've been struggling with fatigue, and Dr suggested a low dose of Clonasepam which did help sleep but made me feel moody. I've tried muscle relaxants before and they didn't agree with me either.

    I guess its a tricky one going through Dr's because most are not experts in CP.

    Getting older and CP is something that doesn't seem to have a lot of support.
  • Nuala WattNuala Watt Posts: 30Member Listener
    HI Jill

    I'm sorry to hear your treatment has been so patchy - treatment of CP in adults does tend to be haphazard in my experience, though this may be just my area. Can you swim? I swim breastroke regularly - I can't do front crawl due to CP in my ankles - and I find that it reduces muscle pain as well as keeping me fit. I didn't learn until I was 22 because I was scared of water - I'm 28 It's a really good form of exercise that doesn't batter your joints in the way other exercise can. Please excuse me if you don't like swimming - it's made such a difference to my symptoms I thought I would mention it. Apart from that, keep going love - it's only a medical condition. It can be a right pain in various parts of the body, but it's only part of you. Very best wishes and good luck. Nuala
  • Jill2013Jill2013 Posts: 13Member Listener
    Hi Many thanks for your comments. Well done Nuala for learning to swim. I havent been swimming for ages but have just moved house and have a swimming pool very close so really I have no excuse now. Like you I can only swim breastroke but Im not that good at it. I think swimming may be the best way for me to start exercising. To get benefit from CP how often do you swim and did you do a course to learn, I think im going to need a bit of advice to improve my swimming.
  • Nuala WattNuala Watt Posts: 30Member Listener
    Hi Jill

    Sorry for the long break in replying. I had adult swimming lessons - it takes some time to learn with cerebral palsy because getting messages through to the brain takes a while. Your mind understands what to do, but it may not be that good at letting your body know. Also I'm quite a slow swimmer relatively speaking because I cannot co-ordinate movement well - I need to do them in sequence rather than simultaneously - so legs, then glide, then arms, Your local swimming pool probably has lessons for disabled adults. I go swimming three or four times a week but that's because I love swimming - it's the only real opportunity I get to move around freely - but you can probably get benefits from once or twice a week. Be patient with yourself. Best of luck. Nuala
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