How a CP brain works

A close friend of mine gave me this thought, which I want to share with you. Imagine how difficult it would be to run backwards, that would be the same for people with Cerebral Palsy trying to move forward. The more we try and concentrate the slower our brains work.

My brain periodically switches off like a light bulb, then I need to rest. It always has done, but only now does it make complete sense. I never understood it back then. On the out-set, apart from the physical signs associated with Cerebral Palsy, to the untrained eye, we look and think as everyone else does, but our reality is very different.

We are completely cross-wired emotionally and physically. Because of the lack of research on adult Cerebral Palsy, there isn’t a lot of information out there, but through various discussions with my Neurologist, he does agree that I am totally cross-wired.

I would like to find out more. It must be frustrating for others having to work around my limitations, whilst at the same time needing to accept I have those limitations. I’m just wondering if there is anyone out there who can shed light on this issue.


19 May, 2010

18 thoughts on “How a CP brain works

  1. Cross wired or not you sure have been able to become a strong and source of support to others, maybe being mis-wired is working for you. Keep up the good work.

  2. Wow this is intriguing. I never understood it either until now.

    The brain fatigue can be very overwhelming and mine needs rest after too much on my mind or too much chaos. I tend to have seizures more if there’s too much thinking or going in around me and/or I’ve been standing on my feet too long.

    1. Thanks Bonnie. Having been kept in the dark on what I have had to deal with and still do, I quietly wanted to know what I was dealing with. This is exactly why I started my blog.

      I am so pleased this particular blog has given you more understanding on what you deal with also.

  3. I was wondering if anyone on here deals with severe fatigue daily. Just getting my kids up and out the door after 8 plus hours of sleep is exhausting.

    If I overdo it, is when I usually have the seizures. The fatigue is a daily battle. My doctor also said it would be because I’m so physically weak. Well I’ve always known I was weak, but never put the two together.

    1. Thanks Bonnie. I wouldn’t say I deal with severe fatigue, but do deal with fatigue as a result of Cerebral Palsy also. Perhaps mine isn’t severe because I do everything at snails pace, too slow for other people’s liking.

      What you’re experiencing is pretty normal and comes with the Cerebral Palsy scenario. The older we get the worse it will become, I’m sure. I hope that in years to come there will be more answers for those of us who struggle with Cerebral Palsy..

      It very much feels like the blind leading the blind. There are very little answers out there; just standard answers we already know the answers to.

  4. Exactly Ilana. Thank you for validating that. When walking with someone, I feel I have to fast walk to keep up with them.

    My husband would mock me and walk really slow beside me, just to show how annoying it was for him. When he’d say we’re going to the store or mall it literally felt like a chore.

    I still avoid stores at all costs!

    1. You’re welcome Bonnie. I know how you feel literally. Until someone walks a mile in our shoes on what we deal with because we have brain damage, they won’t really know what we deal with.

      I think when we have something that we deal with, we already understand empathy and compassion because of what we deal with. I think others should at least try to understand instead of making US feel bad.

  5. It would be great to run errands with you. We wouldn’t irritate one another and absolutely not mock each other. We’d probably actually have fun shopping.

  6. I completely agree Ilana. No one has a clue unless they have the physical disorder and/or brain damage. I don’t know about you, but I tend to be more insightful with others because of the years and years of being misunderstood.

    Don’t judge unless ye be judged.

    1. I couldn’t agree more. It’s not that other people can’t see what other people deal with, because I believe they can. But it’s only when we deal with such hardship we become more aware of what others may have to deal with.

      I believe that makes a difference to our behaviour and how we consciously choose to see things.

  7. I definitely agree as well. Having a cross wired brain makes complete sense and in our own way, I believe we’re ‘tuned’ in a little more in the world, because we think and have different perceptions than some people.

    I don’t know that’s just my assumption.

  8. Hi Ilana, I showed my mom this Diary and she was reading all through the different blogs and our own comments back and forth to each other.

    She’s VERY interested and when she can get internet she’s going to come back on this. I think I sent her a Facebook request to join the diary but I’ll do it again. She’s very happy and pleased with your work on here. She said she’s very happy I found someone to talk to about our difficulties that we have in common.

    My dad also reminded me how patient they were and have been with my ‘slow pace.’ They were very pleased and interested. Thankyou!!!

    1. Awww thanks Bonnie. You’re welcome. I’m so pleased your mum likes my Diary.

      It’s lovely that you and I can face our challenges together. It’d be lovely for your mum to join us both on Facebook.

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