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

xxmysteriousxx xxmysteriousxx
7 Responses Jun 13, 2011

Oh PS I have assumed you are a young lady. Sorry if you are not. No offence meant!

Hi there brave one! My son is a UK teenager with PKC. It was watching him swim which made me realise there was something wrong. Then on sports day whilst he was running 200 meters I just happened to be taking a photo at the time one happened and it was affecting his face and head as well and then as it progressed his whole right side. He is fortunate that Carbamazapine has stopped the seizures.
As a mum I have been looking for a Britsh support group but can't find one
Good luck young lady. You are strong and determined and I know you are going to be successful at whatever you put your mind to and that success will be well deserved

I was 13 when I started to get the symptoms but it wasn’t diagnosed until I was 20 and that was back in 1990. At the time there wasn’t a lot of research about it. My doctor at the time didn’t know what it was and I’m sure thought I was making it up. I was with a specialist for a few years who was really awful to me. I had ECG’s and scans but they couldn’t find out what it was so he said basically it was upsetting me so much (the disease wasn’t it was him!) I should just forget about it. Like you I didn’t tell a lot of people and I did manage to hide it when it happened most of the time, my symptoms would mostly effect my right hand side but also both hands but it also affected my speech as my tongue would spasm. I was very in tune with when it was going to happen as I would get a funny sensation so would be able to get myself in a position away from people. I lived like that 7 years until my new Doctor read an article about PKC and thought that’s what I had and wrote to a Professor Marsden in London. I went to see him and within days he diagnosed me. I can’t tell you the relief that I felt that I wasn’t making it up. I was able to tell people what I had and I didn’t have to hide it. My symptoms less and less as I got older and the last proper one I had was when I was 34 ( I’m now 43). I still have the sensation of the attacks sometimes but without the physical symptoms. I never took any medication for it, I did try but it didn’t agree with me so my Doctor and I wrote a diary so we knew what the triggers were so I had a bit of control over it. I can relate to your story as I have been there and you have the right attitude. You have nothing to be embarrassed about and you are unique :)

Thank you for your post. It gves me hope that maybe my son may grow out of them. Can I ask what triggers you have? I am curious as sometimes I don't think my son's are always triggered by movement. I suspect sometimes going from a dark room to a light one and often when walking through security scanners at airports. Also they are worse in summer so naybe dehydration?

Provided she continues to take the medication she gets no symptoms. She is on a very low dosage and it seems to work for her. However I do not think her PKC is anywhere near as bad as many you hear about. I suspect many others have a mild case and have never been diagnosed or have been too afraid to go and find out what the problem is....

what dosage is she taking do you know?

My daughter has this diganosed when she was about 10, not very badly, but as soon as she was given carbamazipine (tegretol) and took it every day the symptoms went, she is now 28 with a baby.

Hi i just want to know whether your daughter is cured from this diseases permanently?

Hi I'm also interested my daughter was diagnosed with this since age 3 but noticed the episodes since she started sitting up .. But Tegretol doesn't seem to work I feel like it makes it worst and she gets a lot of side effects to he medicine .

" 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. " This is exactly the case.I came from China. I was just admitted to college and I've been suffering from it since I can remember. Some medicine help a little bit but I don't have a single day without suffering from it. The sad thing is that there's so little research on it. But we are special, aren't we?

i love your positiveity , i have pkc for 18 years now and ive had many ups and downs but never let them hold me back , i love sports and have been playing hurling for my home town for 14 years and find the fitter i am the better i control my pkc .. ive had many off turns on the pitch in front off every one but slways stood up again and played on ,,,,,