Hello. My name’s Paul Betney. I met Bryn recently at an event set up by Parkinson’s UK for people with early onset PD, held in the salubrious – love that word! – surroundings of Crewe Hall. It was quite a setting for what turned out to be quite an event! (But I’ll get to that in a later blog). I already knew about the Wobbly Williams website and work, so I was genuinely interested in hearing his talk. I was expecting to be impressed, but what I wasn’t expecting was to find myself at the end of it taking a long, hard look in the mirror in the rather well appointed gents toilets and asking myself what I’d been doing with my time all these years! He seemed to have achieved so much in such a short time, I was completely gobsmacked! So when he asked me after lunch if I’d consider writing a blog for the site there was no way I was going to refuse.
I guess I should begin by telling you a little bit about myself. I’m forty four years old, I’m from Liverpool, I’m an incurable optimist and I’ve had Parkinson’s for about twenty years. I was only officially diagnosed in 2007, but I first noticed the tremor in my hands when I was twenty two, so it only took eighteen years to get the diagnosis. Looking back it does seem a bit odd, I mean, the clues were there. But, as the years had passed and I’d become increasingly shaky, for some strange reason the doctors had only become increasingly confused. I was told that my tremor didn’t fit “the pattern” and the only thing the MRI scans seemed to prove was that I did, in fact, have a brain.
They finally managed to nail the situation down after Parkinson’s medication I was given to try had a dramatic effect on my condition. I guess that was the big giveaway they’d been waiting for rather than the shaking! Still, to be absolutely certain they put me in for something called an “NM Brain Ioflupane DatSCAN” or “Nuclear Medicine Scan”, which involved injecting me with gamma radiation. I wouldn’t have been too happy about that, except that gamma radiation is what Dr Bruce Banner used to turn himself into the Incredible Hulk and I’ve always hated gyms. It had to be worth a shot. And besides, after eighteen years I “really” wanted to know.
I can honestly say that when the results came back my overwhelming reaction was one of relief. Finally I had an explanation. It was certainly a lot better than “Benign Essential Tremor” which was the rather vague and dubious label I’d been tottering round with before. The news was almost welcome.
People are often shocked that it took so long for me to get a diagnosis and ask me how I feel about it. They’re often more surprised by my answer. I genuinely don’t mind. By the time they got me on the good stuff I’d been subjected to some of the more extreme effects of our disease and it had put me through a lot of pain, but at the same time I hadn’t let it beat me. By that point I’d lived and worked in Japan and the USA, I’d visited over twenty countries, I’d worked in education, journalism and radio and I’d started a promising career in stand up comedy. I was also on first name terms with the customs staff at several major international airports.
Don’t get me wrong, it wasn’t easy! I’d certainly much rather not have PD and the problems it caused, but I can say, hand on heart, that I’ve never felt that those years were in any sense lost to me. In an odd way I actually suspect the challenges it threw at me helped make me a better person. So, when the medication eventually came, rather than worrying about how long it had taken I was simply grateful that it had come along at all and I’m more than grateful for how well it’s worked, because I know it’s not the same for everyone. It was a miracle I hadn’t thought was possible. Within a mere six weeks I went from someone who could barely walk to someone who, on a good day, you might never suspect has an issue at all. And that, I happily admit, put one hell of a smile on my face!
I’m not kidding myself up though, I know I still have Parkinson’s Disease. I also know that while things are good now the levodopa that has made this miracle possible will very probably lose its effect over time. So in one important regard nothing has changed, I still have no idea what the future holds. But the thing I’ve come to realise is that not knowing what the future holds isn’t the reserve of people with Parkinson’s. No one on this planet knows what the future holds, it’s just that I’ve been given a reason to think about it and the more I think about it the more excited I get!
I get excited because not having that knowledge makes me really appreciate what I have now. It makes every single day a precious gift! Rather than lose today worrying about what might or might not happen tomorrow I’m getting on with life now. Since I got the medication I’ve certainly tried to make the most of it! I’ve taken up indoor climbing and I’ve also started sailing tall ships. In 2011 I took part in the Tall Ships Races sailing on the race leg from Lerwick in Shetland to Stavanger in Norway. I’ve also got involved with English Civil War and Pirate re-enacting, which has meant learning to sword fight and getting my own sword made.
Maybe I won’t be able to keep those things up when my current medication loses its effectiveness, but who knows, by the time that happens there may be a new, better drug. And that’s the best bit. I don’t know and that means that anything is possible! Certainly I wouldn’t want to go back to the pre drug days, but I coped before and I know I could cope again. I’m more confident that I won’t have to though. I’ve seen and lived both sides of this coin and in the past I’ve told myself that there wasn’t any hope, that this was how it was going to be and I’d just have to accept it. But I was wrong. There is hope. There is always hope and I hope you’ll enjoy my blogs.
Paul Betney 