Those were the words that truly hit me, when I asked the neurologist what Parkinson’s does to you. During those first few weeks following his “I strongly suspect early Parkinson’s disease, Mrs Robijn,” pronouncement my frantic google searches had, meanwhile, already confirmed it. As well as those countless searches for ‘things that look like Parkinson’s, but are actually just symptoms of the common cold.’
Oh no! I hope it isn’t that variety of Parkinson’s…you know, the one that strips you of everything before you know it. No please, I’d give up.
Fortunately, it’s not that particular variety. Phew! All clear. It’s only run-of-the-mill Parkinson’s and it’s not going to kill me.
I’m in unknown territory
You tentatively start exploring your new terrain. What’s worse: not being able to button up your clothes or being unable to write? Both are equally as bad, as far as I’m concerned. I can’t imagine life without buttons and don’t even want to contemplate being unable to write. But hey, I’m brave. Right? So, I start visualising myself in button-free jogging bottoms, using a nifty voice-to-text app.
No way! That’s not me. You’ll never catch me dressed in comfy jogging bottoms and using a voice-to-text app to write bland, common sense blogs. I don’t think so.
This is an absolute minefield
I’m slowly starting to explore my new terrain a little further. I haven’t a clue which route to take. It’s like using a google map that’s only equipped with a single destination: “She lost her fight against Parkinson’s” – or something along similar lines. Nope. That’s not me. All I can do for now is continue exploring that minefield, reading the sign posts: slowed thinking, dementia, freezing, dbs, wearing-off, tremors, hallucinations…
You will change.
I find myself completely absorbed in my personal Parkinson’s minefield, oblivious to all the fun parts that line that google maps route. The parts when life is good. When I can still do what I’ve always done: go on holiday, work on our business, tidy up the house and, most importantly, make plans for the future…for that boxing program.
But no. Nothing of the sort. Instead, here I am, asking my neurologist in a diminutive voice: “But…but I’ll still be the same person, right? He sees my fear, and says calmly: You will change. BAM!
Not that I’ve become a nutter or anything
Last week marked 7 years since we were told that I’ve got Parkinson’s. And I now know that my neurologist was right. I have changed. Not that I’m exactly a nutter or anything. Or bordering on dementia. But I can’t say that I’m the same person as I was back then.
Of course I’m not. Next to impossible. To begin with, you have to navigate your way through that minefield. And if that doesn’t stress you out, then nothing will. I mean, stress is good, because it gives me a kick up the proverbial backside, but I don’t overdo it. Secondly, there’s the medication. Most people with Parkinson’s take meds. Chemicals that change the chemical structure and balance in your brain. Read a few leaflets on side effects, and you’ll get what I’m talking about. And thirdly, you dohave Parkinson’s, you arerunning out of dopamine and likely a number of other neurotransmitters to boot. Slowly but surely your internal messaging system is breaking down. I’m sure I’ll still be as clever (and, occasionally, not so clever) as I used to be. I’m sure I’ll still be as funny (or boring) as I used to be. I’m sure I’ll keep writing. And I’m also sure that I’ll still be making ambitious plans for the future. But…
But I won’t be the same as I was back then.
So now what? Will I accept my inevitable change? No. Because if did, I’d change before I’d even so much as glanced at that minefield. This change, can you measure it? I really wouldn’t know. I mean, I wouldn’t even know what to measure, apart from the standard Parkinson’s variables. Should I be seeing a psychologist? Hm, yes, perhaps. But I wouldn’t want to unearth a host of problems that I haven’t (yet) got or may never even develop.
Am I in denial (that pesky river in Egypt) about the change that I might be undergoing? Yes. A bit. It doesn’t help, I know. I know that it’s better to face the fact that I’ll never be the same as I was back then. Just like those other 7 million people with Parkinson’s.
Now hold on!
Wasn’t it me who said something about ‘the fun parts lining the route’ through that minefield? Those future plans and that boxing program? Yup. That was me all right. Right. Now we’re talking! I’d never have believed that we’d start our own boxing program for people with Parkinson’s. Not in a million years. But we did. I’d never have believed that all that endless tapping away on my laptop would evolve into a series of blogs that would reach the BBC World Service. But it did.
No. All I ever really hoped for, was that I wouldn’t have to go it alone. And I didn’t.
Back to the mines
Take a look around you. Notice all those resources scattered between the mines? Highlighting the good parts of your google maps route? Resources like friendship, Parkinson’s know-how, plans (especially plans!), happiness, love, boxing, Parkinson’s specialists and even the little apple tree in your garden that treats you to an annual bounty of the most beautiful apples you’ve ever seen.
So I have changed (and, incidentally, so have you)
I’ve yet to come across someone who hasn’t changed in 7 years. We all change. We all have to make our way through our own personal minefields. Don’t feel too intimidated. I’m sure that you’ll encounter sufficient resources along the way to keep you going. Resources that will furnish with you all you need to stay who you are. Changed or unchanged.
PS: remember that there’s almost always a choice. You almost always get to choose what you can do, even if you have to relinquish what you no longer can. And, if you can manage that, then you can also manage your change.
PS 2 Listen to the BBC World Service Radio on Monday Sept 30th and Monday Oct 7th.