A friend of mine with cerebral palsy gave me this analogy. Imagine how difficult it would be to run backwards. This is the same for people with cerebral palsy trying to move forwards. The more we try and concentrate, the slower our brains work.
I never understood why if I do too much, my brain periodically switches off. The physical signs associated with cerebral palsy are clear, but to the untrained eye, we appear to think in the same way as everyone else.
However, we are cross-wired mentally and emotionally. My neurologist has confirmed in several discussions that my brain has rewired itself to compensate for my birth injury, and as a consequence it is cross-wired.
Because of a lack of research on cerebral palsy, there isn’t a lot of information out there and although that makes it frustrating for others who have to work around our limitations, it is always harder for us.
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.
Thanks Brian.
What do you mean when you say people with CP are cross-wired and are different emotionally and physically?
Leona I will be happy to reply to your questions in an e-mail. Thanks for posting.
Wow this is intriguing. I never understood it either until now. The brain fatigue can be very overwhelming; my brain needs to 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 on around me and, or I've been standing on my feet too long.
Thanks Bonnie. Yes, I didn't know this was a thing, but I do now.
I am so pleased this blog has given you more understanding on what you deal with around the condition you deal with, also.
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.
Thanks Bonnie. I wouldn't say I deal with severe fatigue, but do deal with fatigue as a result of cerebral palsy.
It's difficult to keep pace with others. What you're experiencing is pretty normal. The older we get the worse it will become, but I hope there will be more answers out there for those of us who struggle with brain fatigue.
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.
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. Going to the store or mall it literally felt like a chore.
I still avoid stores at all costs!
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.
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.
I'm sure we would Bonnie. We automatically know what it feels like. Yes, it's not for anyone to mock, but for them to understand.
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.
I agree. I believe others see what we deal with. If they were to deal with what we deal with, they would take a different stance on what and how they deal with us.
It really is how we consciously choose to see things.
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.
Thanks Bonnie. Ditto on your thoughts. That's right, not an assumption.
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!!!
Awww thanks Bonnie. You're welcome. I'm so pleased your mum likes my Diary. It's also lovely that you and I can face our challenges together.