One's dignity may be assaulted, vandalised and cruelly mocked, but it can never be taken away unless it is surrendered. - Michael J Fox
Today is, of course, World Parkinson's Day. And yes, I may have my little joke with the title of my post, but that's OK, because I have Early or Young Onset Parkinson's, I have had it for a very long time, and if I'm not allowed to laugh at myself, I don't know who the hell is.
Last year I wrote a post called Stone Cold Fox which seemed to attract a fair bit of attention; sadly I think not because of my amazing prose or pertinent and poignant message, but because it featured a photie of me wearing - well, wearing my epidermis and not a hell of a lot else. Bad luck this year my friends, as I found this freaking FANTASTIC Cyanide & Happiness cartoon, and if there's anything that appeals to Parky people, it's black, black, black humour - because if we don't laugh at ourselves, there's definitely bound to be someone else who will get in pretty damn fast.
We have actually come a long way in just the last 12 months when it comes to finding out not just more about why Parkinson's is, but how to actually beat the bugger off for good. For an easy to understand guide to what Parky is all about, rather than me trying to explain it (because let's face it, I am just a little bit biased), I suggest going to the Michael J Fox Foundation for Parkinson's Research's website and reading here. It's sensible language, it doesn't try to blind you with science or doctor garble, and it will help both the newly diagnosed AND their family and loved ones.
30 people a day are diagnosed with Parkinson's in Australia. Of those 30, 6 are of working age. I am 42. I have had Parkinson's since I was 29. I am incredibly, incredibly lucky in the level of Parkinson's that I cope with - but I admit that at times it is tough. I have what are called 'dystonic spasms' (and yes, Mike Fox gets them too) and at times they are so severe it makes it hard for me to talk. They hurt. A lot.
If I am on the phone, I sound slurry, as if I have had a stroke or have been drinking heavily (I wish, jellyfish). I recently had a health professional who should have known better insult me terribly by insinuating that yes, I was indeed bombed out of my skull and that I was making up these so-called spasms.
Suffice to say there were a few tears and then more than a small amount of Kate Stone style wrath (not pretty. Think Oscar the Grouch crossed with Darth Vader crossed with Miss Piggy).
People with Parkinson's, especially younger people, tend to try to hide their condition because there is still so much ignorance about it. Thankfully this is changing; but what would be even more amazing and wonderful is a cure. I have some super, super friends who are doing everything they can to make this happen, and there is one in particular whom I have to give a scream out to.
I am lucky enough to be a part of a wonderful women's netweaving group called LBDG, in itself a massive giver back to the community, and run by the most inspirational rockstar I know - Janine Garner. One of the gorgeous members, Tanya Grausam, runs a fabulous not for profit organisation 'Cocktails With A Conscience'. Not only is she allowing me the privilege of helping her get CWAC up and running in Perth, the first event of the year is benefiting - yes, you guessed it - Shake It Up, the Australian Parkinson's NFP associated with Team Fox, run by the dynamic Caz and Clyde Campbell - Clyde having Early Onset Parky like myself. Tan is also running the Great Ocean Road Marathon in honour of her gorgeous Grandfather who has Parky and is kind enough to include me in the mix. So sponsor her or I will come and sit in your garden and shake at you! And come and drink yummy drinks and give us lotsa cash at our CWAC event in your city!
A lot of people think having Parkinson's is about despair. As someone who has it, I beg to differ. I don't deny there are some very long, dark, deep, teary moments. I also don't deny there are some 'why me?' thoughts. But you know what? Ultimately the answer to the why me question is this...
Am I so bloody special or holy or blessed or without stain that I deserve to be without a little pain?
And for every shake, every frustration with trying to write neatly, every spasm, every trouble swallowing, every bit of fatigue...
There is a bit of understanding. That one day - I will feel better. And so will everyone else who feels a hell of a lot worse than me. And I have to say a thousand thank yous to Shake It Up for making me one of their heroes in 2013. Not deserved, but wow - tears of gratitude and absolute joy.
So shake, rattle and roll this April 11. Straight to a Parkinson's donation box.
And help us find a cure.
Or I'll accidentally whack you during a spasm.
Seriously... it'll totally be an accident.
If you, or anyone you know is concerned about symptoms they think may be associated with Parkinson's, or if you or a loved one is newly diagnosed - or if you want to donate money, time or resources - please go to Shake It Up or Parkinson's Australia. Thank you; and if you are affected, you WILL find a helping hand. That I can promise you. Feel free to message me privately through my blog at any time as well. K x