I am pleased I was given an opportunity to see another neurologist for me to try to find out a little more about my symptoms, and although the consultation wasn’t altogether successful, I came away with some positive thoughts.
I went in with no preconceived ideas, hoping that my neurologist would shed some light on more of my symptoms. I wanted to be given another chance to work through my symptoms, so that I could finally link my experiences with my presenting symptoms.
Unfortunately, I forgot that he would already have notes from my doctor in front of him from previous correspondence. Although that made it slightly more difficult for me, I came out knowing a little more than when I walked in. I gained a clearer understanding of which part of my brain is damaged and which parts of my body this accords with.
My neurologist went on to explain why my leg is worse than my arm and explained in more detail which part of the brain was responsible for that.
It is not possible to be certain which of my daily symptoms are attributable to my cerebral palsy, and which symptoms are to my having been born prematurely, but the neurologist thought that cognitive behavioural therapy would help with brain fatigue.
Ever since I was first diagnosed with cerebral palsy, I have worked tirelessly to find out as much as I can about it: the more I meet with a brick wall, the more determined I am to find out what I deal with.
Ever since I can remember I have always worked with logic. If something makes sense and I understand it, I go with it. The problem is that I know what I deal with is logical to me, but because there is little or no information out there, so it’s not always easy to verify my view of things.
I knew that when I started my journey, I wasn’t guaranteed a diagnosis, let alone an understanding of my symptoms, but in many ways too, knowing a little more about both has made life even more frustrating for me. When we have no information at all, we tend to muddle through without asking questions and accept where we are.
Speaking my own truth for the first time brings a little comfort. Just having someone to listen for the first time helps.