Okay, fair enough: there is no escape. Or is there? Upon diagnosis a substantial percentage of your dopa producing cells will have already packed in. Irreversibly. By that time dopamine production will have usually reduced to at least 30% or 40% in one of your substantia nigra. Which to me is dark matter in itself. Mind you, I once asked a neurologist what a neurotransmitter looks like. “Well, he said, I’ve never actually seen one.” Right.
Then again, maybe they’re invisible, just like electricity.These tiny invisible things are quite powerful though, allowing my body the freedom to move exactly as I wish. Instantaneously.
But once their little dopa-masters have packed in, the invisibles give up the ghost too. So it seems. The door swings, squeaking at first, then: BANG. That’s it; you’re locked behind bars, the end of the line, stuck. Stuck at Parkatraz. Now what?! Feed levodopa to the sharks? Stay put? Wait for better times? Or worse: accept your fate. Worst of all: ask yourself WHY?
I’m exaggerating, I know, but listen: I’ve got a spoon, a map of Parkatraz, a great family, lots of friends all fighting my corner and bucket-loads of will power. So, come on, get your spoons out and let’s get digging for escape. But before we do, you’ll need to sign the General Terms & Horrible Conditions. I’ll reveal what’s in them when we’re out. Trust me on this one.
Escape route 1: The Airlift
Breathe in, breathe out, gently position the Parkatraz spoon on your forehead to focus your mind, feel the earth, the air, the sun (as if), the fire, the love and let go of everything apart from the spoon. Okay, once more: breathe in breathe out feel the earz ze air ze zzzzun zzze lovvvzzz.
Hey, come on sleepy head, what’s the big idea? Fall asleep and all you do is breathe!? It’s good to relax, to be mindful of the present, and it’s certainly a frequently chosen escape route. Number 1 in fact. But let’s not overdo it. I do agree though, that once you’ve woken up, you’ll find yourself feeling a lot more energetic and balanced, ready to take on the world in general and Parkinson’s in particular. That’s good; and it offers an escape for some of us.
Escape route 2: The Gym
Ha, my kinda thing. The gym. Used to hate the gym, gyms of any shape or size, and especially the clock on the gym wall which apparently takes 2 hours to tick away 60 minutes. Didn’t much care for the yelling either: “Come on you can do it, and 100 and 99 and 98!” I was never quite zen in the gym, in the end I wasn’t there at all.
That’s since changed 180 degrees. I’m now thankful for gyms with their funky treadmills, ellipticals and what have you. And don’t forget your Parkatraz spoon here either! You will be needing it for this escape too. Think fine dexterity exercises, facial muscle exercises and think ice cream (you’ll need a spoon to enjoy that ice cream reward post training).
You know what? Exercise should be a prescribed therapy, for those without Parkinson’s too. Actually, those of you with neither Parkinson’s nor any other health issue, YOU are the ones who should be hitting the gym, because YOU are the ones who’ll hopefully care for us. So, make sure you get in shape, will you?
Escape route 3: The Hole in the Wall
Ah. The wall we build around us. The Wall of anger, denial, sadness, bereavement, why-me’s, despair. It’s your worst prison by far. So, pick up your Parkatraz spoon and seek support. You can do with a little help. Don’t know where to start? Look at it this way: I’m writing this blog for you, to help you gouge out a tiny hole in the dark walls of Parkatraz. See the light shining through? Go for it, you’re not alone.
Escape route 4: Meds
Meds. I love them. Despite their side effects. My doc says I’m on a nano-dosage. He’s right. I’m lucky on the meds front. What really worries me, is that no matter how many meds you take, right up to DBS, you’ll always come second to Parkinson’s. For now though meds are a quick and easy escape route from Parkatraz, for me that is.
Escape route 5: The Miracle
Miracles are tricky, very tricky. I mean, don’t we all sometimes dream of a Parkinson-free existence, if only for a few seconds? Vivid imagination about life before Parkinson’s hit? Be careful, you’re about to embark on a dangerous escape route here. It’s not real. Won’t happen senora. Some miracles, yes, but not this one. I’m not even going to bother retrieving my spoon for a Miracle Escape from Parkatraz. I prefer to use mine to dig out tiny daily miracles. The big miracle, no, don’t think so and IF it does happen, then we shouldn’t need our spoons at all.
Escape route 6: The Cure
This is our preferred route, readers. Escape Route 6. I’m actually quite fond of the number 6, my date of birth includes 4 of them. This is where I’m placing my bets. A cure, a man made miracle. As Michael J. Fox says, a cure won’t fall from heaven, we need to climb up and grab it ourselves. But look, I’m no scientist, and I’m hardly a seasoned Parkinson’s patient either. So just like you, wherever you may be in the world, Australia, London, Oldham, Charlottetown or the pretty Dutch village of Huizen, I too sometimes find myself wondering: will a cure ever be found in time for me?
There’s more to it than hope. We have to wield our Hagrid sized spoons to support research, clinical trials and yet more research. It’s okay to escape your personal Parkatraz. What we really need, however, is a global effort to wipe out both Parkatraz and Parkinson’s once and for all.
We’ve escaped. Back to the General Terms & Horrible Conditions
You chose one of the 6 routes and we all escaped from Parkatraz. Congratulations. But but but you HAVE signed the General Terms & Horrible Conditions, binding our deal to reality. I’m afraid I must now draw your attention to the small print:
“Dear escapee, you may have escaped Parkatraz, but there is no escaping the grip of our common stowaway, Parkinson’s. I’m sorry.”
Reality. Full stop.
That, dear reader, is reality. Full stop. No escaping it. But don’t you ever give up on a Cure. Never. Ever. I can help you to escape from Parkatraz. We can help each other. But the Grand Escape from Parkinson’s is a different ball game of an epic scale. Keep a close watch on Early Good News Signs, check out Dr. Michael Okun’s Ten Breakthrough Therapies. One day….