I’ve done as much as I can

In March 2009, after years of not knowing what was wrong with me, I was finally diagnosed with cerebral palsy.

I needed to know about my disability, a starting point on my journey. Shortly after my diagnosis I went to see a Neurologist who agreed to write to the hospital where I was born, to see if there were any facts or information that would tell me more.

I now know that I had a stroke. I am more than convinced that the stroke happened whilst I was being born. My twin was born 57 minutes before me, she also weighed less than me at birth, which makes it more plausible that I was normal until my birth.

My Neurologist thinks that once my twin had been delivered, blood from the placenta will have started to separate, whilst I was still inside, the blood will have clotted and gone back through the placenta into the brain, causing my stroke.

Whatever the outcome, it will be a step closer to knowing about my disability. I am more accepting of it, now that I know a little more about it, but I’m not quite sure about full closure.

26 May, 2010

6 thoughts on “I’ve done as much as I can

  1. Wow, this is interesting to know, but at the same time must be frustrating to you. A stroke whilst being born, twins are definitely a high risk pregnancy (didn’t know how high risk it was until I read your blog).

    I hope you get your answers soon. Keep up the good fight.

  2. After reading your post ‘I’ve done as much as I can,’ I am inspired to educate myself on Cerebral Palsy.

    I find it spiritually and humanly awesome, that while you endure the physical and mental challenges of Cerebral Palsy, you continue to help others with so much vigor.

    I love to see the good in people like you. Thank you.

    1. You’re so welcome Tim. I think it’s inspiring and such a lovely gesture that you want to learn more about Cerebral Palsy. Usually we are so wrapped in our own lives we don’t even think about what others deal with.

      The fact that you are inspired to find out more is enough for me.

  3. Even though I was given no answer yesterday about my condition during my Neurology appointment, I’ll still post comments here.

    I’m very disappointed but it sure isn’t the end of the world and I’ll have to seek a diagnosis through a different doctor. I’m not sure why these doctors only half way help, then tell us they don’t know what’s wrong when it’s clear.

    1. Thanks Bonnie. I feel for you having come so far to find out what it is you deal with, then have your diagnosis cut short.

      I know that when I went for my Neurology appointment 7 years ago, the doctor I saw didn’t specialise in Cerebral Palsy, but going on the scan he could clearly see the extent of my brain damaged and surmised from my symptoms that it was clear I had Cerebral Palsy.

      When there is more confusion around a diagnosis, doctors do tend to pull rank, but with a little more perseverance from you and your family with a different doctor, I am sure you’ll get your diagnosis.

      It might be helpful you going back to find your medical notes as a child too. You might find an open door through those means. I now have in my possession medical notes dating back to when I was 2.

      Please keep in touch and let us know how you get on. My site isn’t just about Cerebral Palsy and what we deal with. It’s lovely having you on the site Bonnie. I’m sure you’ll have more to contribute. Stay strong.

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Ilana x