As many of you know (if you have been reading this blog) or may not know (if you are new to this blog), I have diplegia spastic Cerebral Palsy: A neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development. Cerebral Palsy primarily affects body movement and muscle coordination. ¹
Currently, I have no real-life friends with CP, so I find that I have no resources to compare my experiences with others. Thankfully, there is the internet.
It started a few years ago, although CP is technically a non-progressive condition (i.e. it does not worsen as one ages), it does; however, contribute to a few conditions, such as, difficulty walking, premature aging, increase weakness, increase pain, increase in repetitive strain, and increase fatigue. ² I found that I wanted to know if others with CP felt the same way, so I turned to the internet and I found others discussing this topic on YouTube, Facebook and Twitter.
It helped me see that I was not alone, and that others were going through similar situations.
There is a lot of information on Cerebral Palsy in children on the internet, but there is little to no information about Aging with Cerebral Palsy. It is only now, that the medical field is beginning to examine the issue.
Thus, having people whose stories tell of the pain, the weakness and the fatigue they were experiencing was a blessing. I discovered that I was not alone in my experiences.
The issue is that once you turn 18 years of age. You are left on your own. When I was a child growing up, I saw a specialist that worked out of Children’s Hospital. Once I became an adult, that door was closed to me (it didn’t help that my orthopedic surgeon moved south to Texas to set up practice there). I had only my family doctor to go to.
About six months ago, my family doctor here in Vancouver recommended a specialist to me. He prescribed a muscle relaxant that lessened the stiffness in my muscles (and thus the impact on my joints) when I walk. It has helped tremendously. I also have a professional resource that I can refer to as needed.
I still enjoy connecting with those whom I have gotten to know off the internet. They help me to know that I am not alone. I am glad for these connections. The internet can be a great source when one has no where else to turn to.
—Robert Confiant 19 November 2017