My Pkc Story.....Ok, so I'm quite nervous about writing this, mainly because I've kept my disorder a secret for so long. But this is the only support group that I have found so far, and so I thought that I'd just put my story out there. Also, I'm only a teen with the disorder and I've seen that a lot of you are adults with it, and so I thought that I may as well submit my story...even if it is just so that people can understand this from a teenager's point of view....
I've had PKC for as long as I can remember. There has been no history of it in my family and very few people with it living in the UK. It was first noticed by my parents, when I began learning to walk. They tried many times to tell my local doctor about my 'episodes', but he dismissed them as "being wobbly first steps". One day, my parents videoed me having an episode and took it to the doctor, who referred me to the local hospital.
I was only young at the time, and so I was can't remember exactly what tests were conducted on me. However, my parents told me that I had one or two MRI scans and some kind of electron test on my brain. Eventually, I was diagnosed with PKC.
After that, I had to regularly travel back and forth to the hospital, so that they could check up on me and conduct minor tests (e.g. to check that I was developing normally). They also tried to give me various drugs, including Lamotrigine, a drug that I have seen is widely mentioned here.
However, the drugs didn't seem to be helping my disorder at all. And just before I moved up to my junior (middle) school, I was weaned off the drugs. This somehow seemed to improve my condition.
When I moved house, I asked my parents not to tell my new school about my disorder. This was also the same when I began attending high school. I've always quite enjoyed school, but sometimes my disorder makes it not such a nice place to be. For example, I used to have to attend compulsary swimming lessons as part of the school curriculm. The swimming teacher would always become annoyed and tell me that my right arm wasn't in the correct shape or my right leg wasn't moving correctly (PKC only affects the right side of my body). Also, sports at school were difficult. It was hard for me to try and mask my disorder, especially when we had to do running or cross country races.
Then there was the non-sport related school incidents. One time, I started to have an attack, and pretended that something was wrong with the insole of my shoe. My best friend (who didn't know about my disorder) began saying that I looked like those people who have those 'freakish muscle spasm attack things'. This made me really upset. Another time, there had recently been a documentary on TV about people with a similar kind of disorder. I was out for pizza with my friends once, and one of them said that the documentary and the people in it were 'Freak Show'.
I always felt as though my disorder was my dirty little secret or something.
However, despite all of these setbacks, I'm determined not to let my disorder beat me. I try to have a regular teenage social life, such as going shopping and attending parties. In addition, I am very ambitious towards my passion - horse riding. Many people think that getting on a horse (which is much stronger and more sensitive to the touch that you) is a mad thing to do if you have a form of epilepsy. But I want to prove those people wrong. I have been riding since the age of 5 and nearly ten years later, I don't intend to give up. Sure, my disorder hinders me in many ways (e.g. I have fallen off my horse due to it and I have become used to harsh critisism regarding the position,etc of the right side of my body), but I love my sport too much to give it up.
I also carry on with my sport, as I want to prove to people that your life doesn't stop just because you have a disability.
In the future, I hope to find new ways to cope better with my condition (if you have any tips, I'd love to hear them) and I sincerely hope that they find some kind of cure or make some kind of breakthrough regarding PKC. But in the meantime, I guess that I'll just have to be a unique person trying to live an ordinary life. Because if a regular person could just spend one day in the shoes of someone with PKC, they would never complain about their regular life again. Sadly, not enough people are even aware of the condition. And if I am ever lucky enough to be able to have the opportunity to do so in some way, I want to change that.
Thanks for reading my story