As a toddler I was originally incorrectly diagnosed with spastic monoparesis, because I have two limbs affected, not one. Since I started my Diary, it's often been difficult to uncover the official correct diagnosis, but feel I have managed that now.
First discovering at the age of 46 that I had cerebral palsy and through my own research evaluating my symptoms, I finally have the correct diagnosis, which is 'cerebral palsy hemiplegic.' Hemiplegic refers to a child or adult with weakness or paralysis on one side of the body and that is what I have.
Hemiplegia refers to the injury
Although I have many symptoms associated with my brain damage, hemiplegia refers to the injury, in my case the part of the brain that controls muscle movement. Hemiplegic refers to the diagnosis. This blog explains my 'hemiplegic' symptoms.
Hemiplegia means paralysis
Hemiplegia means paralysis on the side opposite to the affected part of the brain. Because my brain injury is on the right, I have paralysis on the left. Symptoms for each child and adult will differ, but my symptoms are as follows:
The physical I have touched on, but there are also the cognitive and behavioural effects that result from a brain injury. Although each child’s symptoms may differ, the following are what I deal with:
Social communication
Social communication as a child was difficult to near impossible, but has become easier over the years through my ability to use my intuition as a guide. My intuition helps me read situations and circumstances. It also helps with interpretation and application of social cues (knowing how to behave).
How my disability presents
Those like myself with hemiplegia may have some atrophy to the arm, shoulder, hand, leg and foot and a leg length shortening. My left arm, hand, leg and foot are affected. The leg on my affected side (left) is shorter than the right side by ¾”. I have been told it's because of the ¾” shortening that I have scoliosis.
I think the worst part is the scoliosis. Potentially realising I had scoliosis as a small child, and then realising my fears when the diagnosis was confirmed at the age of 25.
Yes, a proper diagnosis when you were much younger would have been helpful, but sadly that didn't happen and you had to learn on your own how to adapt and survive.
My daughter was diagnosed with right side hemiparesis, which meant that she was affected on the right side and wasn't able to use her arm and leg, but she was diagnosed at 6 months old which made a big difference.
The biggest problem she's had is a mother who never pushed her to do much of anything to help her learn the life skills that she needed, so now at 28 she will have to learn the hard way.
I wish I could be there to help her out, but after I rescued her from the nightmare that she was living in with her mother and her husband, she decided that she didn't want my help.
Your time will come Randy. Until your daughter comes around to a different thinking, sadly as you've intimated, you'll have to sit this one out, but your time will come.
I'm pleased that your daughter was diagnosed at 6 months. Cerebral palsy is usually diagnosed between 6 months and 2 years and I am sure you're right about your daughter's mum. It's so important for children to have the right emotional support.
I know you've had to deal with your daughter's disability, so you've had experience with a disability, but thanks for your understanding Randy. Apart from my leg and foot mostly, my neurological symptoms are completely invisible.
And although my symptoms and how I present were always ignored, but now that I have understanding and I know my struggles that doesn't always help me around others.
It's not like a broken leg where everyone can see you struggle and they have sympathy. Perceptions have a lot to do with attitude and how we help and deal with people, but around disability we have a long way to go.