About 12 years ago I was “holidaying” at my parents farm with my husband and 6 month old baby. Dad and I were lounging in the TV room (yes a room that has a TV in it, commonly called a lounge, but we’ve tended to name it after the best thing in it haha). I got up and walked towards the kitchen and Dad said, ‘Why are you walking funny?” This is my first memory of the symptoms appearing that began as my dystonia journey and morphed into my ‘holy fucking shit its Parkinson’s’ journey.
For starters I am not a ninja. Its more of an aspiration than a reality. I’ve always thought it would be really cool to be a ninja, and to have some ninja skills (but without having to put any effort in!). Actually as a kid my greatest goal in life was to be able to do the splits. I thought about it a lot but didn’t do anything to achieve it. I never seriously considered doing any martial arts, and pretty much avoided anything resembling exercise. Which is why it is so weird now to say I am learning karate, and I’ve acquired some karate skills at a time when I’d begun really struggling to move and was all kinds of fearful about the future. I’m 41 years old, with a degenerative brain disease that leads to pretty awful mobility, depression, and a stack load of other awesome problems. Yet I can still learn. I can improve. I can hope.
But more on that later. I don’t know quite when the dystonia started. I don’t think I had any problems prior to having babies. At 29 years old, I had my first baby Niko. His entry into the world was a tad rough (he got stuck, we needed forceps – which meant a spinal block for me – his cone head was spectacular!). Later on I blamed this experience for the seemingly random appearance of dystonia. The problem was in my big toe – it just started to cramp itself down towards my foot. I’d look at my toe and say to it ‘Why are you doing that?’ And by concentrating I could make it straighten out, but as soon as my focus wavered it would go back to crunching. This seemed to put my whole gait (walk) off – I dragged the left foot with the confused toe on it, and sort of limped along. I also had the tiniest, slightest tremor in my hands from time to time, but that didn’t seem to worry anyone.
So I went to the doctor in Johnsonville and she watched me walk up and down the hallway for a bit. She decided it was probably anxiety and put me on fluoxetine (often called Prozac after one of the brands), and I went away hopeful that it would sort itself. After a time I decided to go back, and that was when the doctor thought it might be some kind of neuropathy and referred me to the neurology department at the hospital. At which point I started to think I had a brain tumor and was going to die very soon. It took a long time for the neurologist to decide on dystonia. I went and got seen, and they did all these inexplicable tests. I walked up and down hallways a lot, with a crowd of people watching. Strangely I could run completely normally, and in fact running for me was heaps easier than walking. So there was a lot of walking to the end of the corridor and back, and then running to the end of the corridor and back, just for kicks. They did all these reflex type things, like when they hit your knee with a large hammer and watch it react. I had to flip my hand over and over really fast for 20 seconds, and pretend to play a piano. They stuck me with a pin down my legs – ‘Can you feel that? What about now?’ They looked in my eyes. Scratched their heads. I seemed mostly normal. They decided I didn’t need an MRI at first, then about a year later gave me one. My brain looked healthy. I did a 24 hour urine copper test (making sure I don’t have Wilson’s disease I think). They also did a nerve conduction test (electric shocks to your muscles to see how they respond). I hated that one. I remember right from the beginning doctors ruled out any concern about it being Parkinson’s. Am not sure why. Eventually an expert from the US saw me (a doctor that would come to NZ about 6 monthly and review difficult cases), and he said “dystonia”. Specifically segmental focal dystonia affecting my foot. Not much was available to help this problem (oh great), although for some people a drug called Sinemet worked. Its for people with Parkinson’s I was told, but don’t let that worry you. I was given a script for Sinemet and instructed to give it a whirl on the off chance it helps. It was like a miracle cure. When you’re prescribed it you’re told about this long and scary list of possible side effects. I would get lots of nausea when I took it, but the impact of Sinemet was so amazingly good, I felt cured.
Hooray, problem solved, everyone breath a sigh of relief. By now I had two little boys, and life was pretty full on. But as I had a drug that worked, I basically just got on with things. I didn’t really know anything about dystonia much, but it seemed under control. The main thing was it was not expected to get worse. Lucky I didn’t have Parkinson’s I was told, those poor buggers have it way harder!