Piecing my history together

Since I was never told that I had Cerebral Palsy it would always be up to me to try to put the pieces of the jigsaw together, through my experiences, consultations with one or two Neurologists and from obtaining copies of my childhood medical records.

Yesterday I was re-looking over my medical records so that I could gain a better insight into my medical history. I know from the correspondence between my Consultant and General Practitioner at the time, my Cerebral Palsy was brought on from a stroke around birth.

The MRI scan that I organised in my late 40’s, shows an old stroke in the distribution of the right anterior Cerebral Artery and there is extensive damage to the right Frontal Lobe and a part of the right Parietal Lobe. The Consultant confirmed these to be the cause of my early hemiplegia and persisting hemiparesis and why I was also slow to learn in school and this ties in with what I know about my learning difficulties.

Although I was originally diagnosed with Spastic Monoparesis at the age of 2, but never knew, I would later go on to find out in my 40’s that I had Spastic Hemiparesis, (two limbs) and a drop foot. I also have a tight Achilles tendon with a shortening of ¾” on my left side and muscle wasting on my left side, also.

Oddly there is a Spina Bifida diagnosis in my notes, but the initial diagnosis from the age of two, is Cerebral Palsy.  There is also mention of Scoliosis being a secondary symptom arising from the difference in leg length. I remember thinking how curved my back was, but would constantly brush it off, as there was never any mention in any of my medical records, until I was diagnosed at the age of 25.

Although this blog seems a little bit of a mouthful, lots to think about and work through, I felt it important it got written. As an inquisitive child always looking for answers from family members, I felt it important and needed to know what was wrong with me. I’ll be doing another blog on the fuller picture of my symptoms in due course.

Whilst I have since come to understand why I was never told, this is something I will continue to live with for the rest of my life.

16 Dec, 2015

4 thoughts on “Piecing my history together

  1. It doesn’t make sense why you were never told you had Cerebral Palsy. The only reasons I can think of is denial and ignorance. I would be upset too if such vital information was kept from me. It seems you are doing a good job piecing everything together. I admire your perseverance.

    In my case, my Cerebral Palsy was never discussed at home. I started researching about Cerebral Palsy online, when I moved out of home. It helped me understand why I experienced certain symptoms.

    This new understanding made it easier for me to accept my Cerebral Palsy.

    1. Thanks Maria. Although I never knew what I had, my physical problems were never discussed or mentioned at home either and when I tried to discuss my Cerebral Palsy, the topic was quickly dismissed. That said I also believe it’s denial and ignorance by simply ignoring the facts, hoping the issue goes away.

      I’m pleased you know enough now to help you bring acceptance on your Cerebral Palsy.

  2. This is a hugely important blog for you to write but you have done so in your usual calm, reflective and positive approach.

    There are only two people who can answer the obvious question why all of this was never mentioned to you and you will have to resolve that they cannot explain why. You now at least have a full and proper understanding of the difficulties you encountered as a child and young adult, but you should have been entitled to know that sooner. To me there are no excuses.

    You seem to have found further acceptance with this blog and we all admire you for that.

    1. Thank you. Yes, once I publish my next blog that explains in more detail my symptoms, I’ll hopefully find an acceptance.

      Whilst I cannot change what’s happened, it would be good for me to bring about an acceptance. With acceptance comes a sense of peace, even if we can never have the full understanding.

      Only those close to us know why or why they choose not to do something. It’s something they have to live with.

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