So You've Got Parkinson's Disease
So you’ve got Parkinson’s Disease, an incurable degenerative neurological disorder. Damn. Bet that wasn’t in the life plan. It sure wasn’t in mine. Yet here it is, scaring the living daylights out of me regularly, trying to take me down and I’m seeing the pitying looks from all my friends, family and anyone that finds out. For some, it means issues at work. Perhaps it impacts the job that offered security and safety. Whatever it’s done, it’s a great big pain in the ass.
I’ve had Parkinson’s for who knows how long. Welcome to this. People say “I was diagnosed” instead of “I got it at (insert date here.)” The truth is, we don’t know when it began. Perhaps we were too lax with the derris dust we sprinkled on our home-grown broccoli (my personal pointless pondering), perhaps our parents passed it in our genes, perhaps we’ll never know. We mostly don’t. The horrible fact remains that it is here and we must deal with it. I’m living with Parkinson’s Disease. I don’t like it.
Perhaps you’re here because you’re newly diagnosed. Don’t worry my friend, we’re here and there’s a whole community of people out there as angry as you. That in itself can be freaky and scary. Let’s be honest, it’s not a club you wanted to be a part of. It’s OK, neither did we, we’ve all been there. We’re young people, older people, parents to young children, grandparents, we’re captains of industry and we’re home-makers. We’re people, just like you. We’re not the elderly and infirm, we’re not worn out, ready to curl up in a corner and conveniently die. We’re not ready for a nursing home. Our minds are sharp, our will is strong.
What is Parkinson's Disease?
In case you’re not already aware, Parkinson’s Disease (PD) is a neurological disease. No. You don’t have M.S.. You don’t have Motor Neuron Disease either, though people will think you do. People will misunderstand what is wrong, and that’s OK. Basically, your substantia nigra, a thing in the very centre of your brain, isn’t producing enough dopamine. Dopamine, you say, the thing that gives you a heady rush of the feel-goods? Well. Here’s the thing. Not all dopamine is created equal. The kind of dopamine that we’re talking about is one that regulates automatic movement. It’s still dopamine, but not as you knew it. Tricksy stuff this, who knew it was quite so important? It means that your movements, the automatic ones, aren’t quite as automatic as they used to be. That’s the lack of the magic missing dopamine.
Living with Parkinson’s Disease is weird. What you will realise is that when you think about a movement, you can still make your body operate the way you want, for the most part. However, you may have a tremor, or in my case, a limp as my left leg doesn’t realise it’s being left behind. It’s different for all of us. It’s so hard to describe to someone. It’s been likened to dragging through mud, but it’s not quite that either. For ages I KNEW that my left hand wasn’t responding as well as it should, but everyone said “Hey, it’s your left hand, the non-dominant side, of course it’s harder to play the piano that way.” I couldn’t quite get people to understand. When my medication is running full-throttle, even I don’t really understand. My body works, just like it used to. I walk easily without a limp, my arm and hand do everything I want easily, my head is… just there, right?
Then my medication wears off.
And that is happening earlier now, so I suppose my PD has progressed. Scary stuff. It’s hard to detect at first, my arm just ‘feels’ a bit odd, then I’ll notice my neck has a desire to hang my head slightly to one side. If I’m walking, I begin to drag my toes and possibly trip. I feel it. I hate it.
Keeping it Real
While this site and this very post is here to offer you hope and positivity, we have to be real about this. My co-founder and friend Emma summed it up perfectly when she said, “It’s like, you want to shout and scream and cry because it’s so awful and horrible and so damn scary, yet you also want people to know you’re still a fully functioning human being of worth and value.”
It’s OK to be angry. It’s OK to cry and shout. However, we would urge you to take your medication, find someone you can talk to and confide in. I was told to stay quiet about my PD, but hey, I’m from Yorkshire and we Northern women just won’t do as we’re told. There ARE things that you can do to help increase your mobility, help slow the symptoms. We’re not offering cures and snake-oil here, that’s not what we’re about. But we can offer a friendly ear, some help, advice and the right places to find information. We’re fully aware that we cannot stop the disease that’s inside us, trying to slow us, change who we are. We are not our disease. We are not Parkinson’s.
It won’t be easy. We can tell you that it’s a hard road, but dip your toe into the PD community and you will honestly be stunned at the people you find. We’re all there, young and old. Some new to this, some old hands. We all cope in different ways, but we find a way and we’re not going away any time soon.
No Promises
In time, when you begin to come to terms with this horrible thing you now share your life with, check out some of the positive things you can do. I’m currently doing daily yoga. Well. Most-day yoga. I’m rubbish at it. However, it helps me get going on a morning, and what the hell, I’m actually finding I’m fitter, stronger and bendier than I’ve ever been before. I mean, who knew that exercise and (trying to) watching your diet would be good for you?
Emma is really into Karate and is super good at it, though she’ll laugh at that. But she is. I sure wouldn’t pick a fight with her. It’s not about that of course, there have been heaps of studies about the positive effects of martial arts, boxing and exercise in general and Parkinson’s. Look, it’s that exercise thing again.
You’ve now got a great reason to look after yourself. You might even find that you can improve your bodily functions and mobility. No promises mind, we’re not that kind of site.
There it is. That’s how I think most of us feel. That’s OK. Nobody enjoys living with Parkinson’s Disease, but we’re all in this together. Dammit. Buckle up and try to enjoy the rest of the journey.
Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.
Find out more at her personal site below.
Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)
Find out more at her personal site below.