Shakin' All Over

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.

Myself and the marvellous Mr Jason Garner at a Shake It Up fundraiser in 2013 - drinking to raise money, of course!!

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...

'Why not?'

Am I so bloody special or holy or blessed or without stain that I deserve to be without a little pain?

No.

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.

Heh.

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

Look, Up In The Sky! It's A...

““How Superheroes Make Money: - Spider-Man knits sweaters. - Superman screw the lids on pickle jars. - Iron Man, as you would suspect, just irons.” ”

— Jim Benton, Okay, So Maybe I Do Have Superpowers

Yesterday I was incredibly humbled (and pretty chuffed) to be named Team Fox Australia and Shake It Up's Hero of the Week. There are two reasons I mention this; one, I am supremely egotistical (actually, it's so you go to the website and donate lots of money) - and two - it made me think a lot last night. Admittedly my thinking was slightly blurry as I was having a bit of a bad evening, and therefore muscle relaxants were involved... but still. I won't be the first to write with some mind altering substances under my belt.

So last night's thinking.

I am a complete geek. And a big kid. I recognise this. I embrace it. I happily admit to liking Lego, Dr Who, Matchbox cars, have heinous taste in music and movies, love any techno gadgetry I can find... and oh yes.

I have a thing for superheroes. And Asterix, but that's possibly a different discussion.  Perhaps one could even count Dr Who as a superhero, but again, big, big discussion and it makes me think of David Tennant and I get off topic.

Sigh. Where was I? Oh yes, superheroes.

I have never understood, I admit, how Diana Prince just had to undo her hair and turn around really fast to become Wonder Woman. Maybe the dudes were distracted by her golden lasso? Smirk. It's like Clark Kent - a pair of black rimmed glasses is a truly craptacular way to hide your secret identity. Yes, people are a bit on the thicky side sometimes, but seriously...

Batman on the other hand - how the hell would you know who was under that rubber blankie? Kudos to you Bruce Wayne on actually wearing something which could be considered under the definition of an actual 'disguise'.

What is fantastic - and fascinating - to me about superheroes in general though is not just their super powers. It's the whole 'put the public good before myself' mentality. It's something we all aspire to and the reason we love the Justice League et al is because these men and women go out and do what we can only dream of. Who wouldn't want an invisible jet to fly around and fight crime in? I'd certainly like to be able to leap tall buildings in a single bound - usually when there's really bad traffic admittedly - and as for the Bat Cave... oh yes. Yes, yes, yes.

Superheroes are the side of ourselves which most people only think about showing, before rolling over and hitting snooze. It's much easier to do imaginary good when you're warm and comfy under the doona than it is to get up and cracking and actively volunteer to help people out.

I am as guilty of this as the next person (unless the next person happened to be Batman. And I wouldn't know it was him, BECAUSE HE WEARS A PROPER DISGUISE). But I am attempting to change this. Yes, it is mostly through self-interest, but so what? I have Parkinson's. I want a cure. So I am getting off my butt and doing as much as I can to help raise money to find out what the hell is wrong with my brain.

And the reason this is a gratitude post?

Because so many of the people I care about support me not only with moral fortitude, but they are actively trying to raise awareness and cash too. How can I not be grateful to these everyday superheroes?

Without sounding preachy, if you care about a cause, don't just talk about it.

Get up, get dressed, put those underpants on the outside of your tights and get ready to be faster than a locomotive. Because everyone has superhero potential.

You just need to learn to fly.

Or own a Tardis. Oh David Tennant...

Twisting By The Pool

““Life is pain, highness. Anyone who says differently is selling something.””

— William Goldman, The Princess Bride

It has been, to put it mildly, a very trying week. I am not even going to pretend otherwise. There are times when it is better to lay down one's arms, stop trying to rule the known world and simply admit defeat; to say to the dragon 'come out, come out wherever you are' and let it flame you for a few moments before taking up shield and sword again.

Even princesses in shining armour need a break every so often.

I was talking last week about not sucking it up. And yet again, I may sound as though I am having a bit of a whinge. In a way I suppose I am, because I am talking about being in physical agony. But I am also talking about gratitude, and how I feel about normally having it - well, normally having it pretty damn good.

Planet Pain. It stinks. It is not a nice place to be - at all. I don't like visiting, and I cannot believe that I used to basically live here on a full time basis.

What I also cannot believe is how much I take for granted now in terms of how well I am generally, and how grateful I am for the progress that I have made, and continue to make, in terms of staying healthy and fighting what my body and brain would quite like me to give in to at times.

I am also grateful that I know the reasons behind my pain this week, and that I know there is a 'most of the time I am fine' end in sight. For so many people whom I know who have Parkinson's or Dystonia - or both - they are not so lucky. They hurt all the time.

All. The. Time.

Imagine being 30 years old. Or 35. Or 40. And you wake up in the middle of the night and your back is twisted, and your feet are in cramps so severe that they form circles, and your jaw is trying to make its way through your collarbone just for the hell of it. And it just won't stop. Not just for minutes, or hours; but days. Or weeks. Or months.

Or years.

I have only faced days at a time.

My beautiful Rogers - and in fact so many people I know - face, and have faced, the latter.

Sometimes I underestimate her bravery because of her silly sense of humour and because she is so gorgeous that you forget about the lean-over. And she doesn't talk about the pain.

But then whenever I end up as a pretzel I remember.

And I think all over again about how amazing she is. How amazing all of the wonderful people that I know are.

And how grateful I am for their strength.

I will say this, and it is something it has taken me a long time to learn; if you are in physical pain, don't be afraid to admit it. I am not talking about sitting there and  constantly griping 'I'm hurting', because believe me, people will get sick of it pretty bloody quickly. But - if you don't speak out, then nobody will understand just what is going on, and when you are irritated, or sharp, or simply aren't coping, they will be puzzled, and perhaps angry, because it will be out of the blue. If you are factual and admit to what is going on with your body, then understanding from those who care about you will be there. Not from everyone - but from those who care for and love you, yes.

I am constantly and consistently grateful for those who express empathy to and for me. Not in a 'keep me in an illness box' way, or a pitying way - but in a 'let's get you better, constructive, slay that goddamn pain dragon' way. Particularly the Dread Pirate who has been very good (in a piratey fashion naturally).

It helps me put the armour back on, however heavy it may feel, and get ready to fight the good fight again.

Mistress of the Universe?

You bet your sweet... donkey.

Works for me.