Tuesday, October 01, 2013

Not So Terrific

For some, this is going to be old news, for others, this might be the first time you've heard about what I'm going to say, and for a few, this might just be the first time you've heard me saying it. But, I'm fairly confident that for everyone, myself included, this is going to be a difficult post to read. I'm sorry.

Around February or March of 2012 I noticed I had a slight tremor in my left arm. Nothing too serious, just a small thing. I thought it was stress induced, as we were between our visas and not working. Unfortunately, when I had to get my medical as part of my visa, the doctor said it wasn't stress, or RSI, or any of that, and referred me to a neurologist. As a man, I delayed seeing him for as long as possible.

On October 1st, 2012, one year ago today, I saw the neurologist, and he confirmed that I had early onset Parkinson's Disease. Or at least, he confirmed it as best he could. There's no medical test for PD, but he said I had all the typical signs. He recommended I get an MRI to confirm it wasn't anything else. I got that in December, and it came back clean, so we were back to the PD diagnosis.

Here are some facts:

About 10% of the population will get PD at some point in their lives, but most are over 60 or even 70 years old by the time they get it. About 4-5% of that number get it before 50, so I am in a select group, a fraction of a fraction of the population. I should have run out and done the lotto when I was told, but I didn't. I was devastated. My entire life just crumbled away before my trembling fingertips. For a brief time, I thought I'd lost it all. I thought we'd have to go back to Ireland and give up everything we had worked so hard for here in Vancouver. Going back wouldn't have exactly been a terrible thing, mind you, but we really did love it here by then, and do even more so now. Also, the health care system here is insane, and the University of British Columbia, just a bus ride away from where we live, is at the forefront of research into treating Parkinson's.

I thought I'd lose Claire. I know, that's a stupid thought. But for a moment, I thought it. I even offered to go home without her if it came to it, allowing her to stay here and work on her new and swiftly growing freelance career. She was having none of it, of course, and in the last year, as in the last 13 years that I've been with her, she's been nothing short of incredible.

That's it. That's all the bad news. So here's the good stuff:

It's been a year. Nothing much has changed. I can still work, I still love my job. I'm not taking any medication yet, despite the neurologist telling me in October that I'll probably be on something within 6 months. It's been 12 months now, and it hasn't gotten a whole lot worse yet, which is, obviously, a good thing. It's localized at the moment to my left arm and left leg. My right hand is... yup, just checked now, it's as tremor-free as it ever was. So this doesn't stop me drawing or writing. Even my left arm hasn't gotten significantly worse, as far as I can tell. My leg is fine if I'm walking or even running short distances, but if I try to fast-walk or jog, I notice that it stiffens up a bit. Running and fast-walking must use different muscles, or at least muscles in different ways. Even then, it hasn't been enough to stop me from doing anything. This summer is Vancouver has been astonishingly good, and I've done more outdoor activities than any summer I can think of in recent memory.

And I still have Claire. She's been my rock and my saviour. I know that this kills her at times, but usually, she's fine. She only seems to get upset about it when I'm telling someone about it. When I told the gang back home, I noticed she had to quietly leave the room.

But we're over the shock now. The first week, maybe two, was the hardest. After that, we both realized that not much has changed, or will change for some time. I'm an eternal optimist, so I just picked up the pieces of my apparently shattered lives, discovered that everything was intact, and had, in fact, just been knocked off the shelf for a bit.

I love following the development of technologies, and there is some fantastic stuff coming down the line for PD. This diagnosis 10 years ago would have been a dramatically different story, and in 10 years time, it'll be different again, in a good way.

Why am I telling you this now?

 Despite having a noticeable tremor since February or March, I was diagnosed a year ago today. It's hard to find the right time to tell people bad news, and it's very easy to find excuses why any time is the wrong time. I didn't tell anyone when I first got diagnosed, apart from my family. It was right before Christmas, and I didn't want to "ruin" anyone's holiday. Then we were planning the trip home, so why break the news to my closest friends over email when I'll be seeing them in a few weeks any? Then we were back, and I had work to divert my attention. Then it was the summer and everyone was having a great time. I could find excuses for now too, like, "I'm too busy", "I haven't blogged in months", "I want to write about other things", but that's all just putting it off, when really, I feel like people should know.

I don't want this to be a secret, to be some dirty thing that I'm going through. I want to be open with it, to show everyone that I'm still me, still living my life. And this is the first step to that, telling people.

I'm sorry if reading this has upset anyone, or ruined anyone's mood for the day. It wasn't easy writing it either. I'm sorry if you feel left out because I didn't tell you in person. It's hard to talk about at times, even after a year. I've never been sick before. I've never had to tell anyone I'm suffering from anything that doesn't warrant a "Ya big baby! It's just the flu!", or what have you. I've never taken medication for anything stronger than an over-the-counter painkiller, and even then, it's rare.

I've told people in a reasonably big group, in small groups and individually. I had to tell my mum over the phone. None of them are particularly "easier" than any other. At least in person, people can see how I really am. I mean, for all anyone reading this knows, I can be saying "I'm fine", while rolling around uncontrollably on the floor! I'm not. I really am fine. It's just clearer in person.

We live in a world where we know enough about the brain that I could get a probe shoved in to just the right spot to stop the tremors at the flick of a switch. A world where, excepting some horrific natural disaster, we're moving forward at an alarming pace with technology of all forms. A world where someone somewhere is finding another new way to make us live longer, better, healthier lives.

And I'm going to benefit directly from all of that.

I live on. I look to people like Michael J. Fox, who was diagnosed with Parkinson's when he was 30, and has just started a new sitcom as I write this[1]. He still works, and has a wonderful family, and this brings me great hope.

This is a comma in the story of my life, not a full stop.

[1] - I can't bring myself to watch The Michael J. Fox Show just yet, but I'll be sure to write up a review once I do.


Liam FRost said...

Stay strong my friend.

Andrea said...

Totally just a comma Denis