Ah I know some with Parkinson's too...

Coverstory of Parkinson Magazine, October 13, 2015

This is the EN translation of the coverstory of Parkinson Magazine, October 13, 2015

Thank you, Dutch Parkinson Society – for allowing me to share my story.
Thank you, Astrid Smits, editor of the Parkinson Magazine, for the interview, patience and for so carefully putting my story into words.
My friend Lesley Gunn translated the original NL version into EN.

For those who cannot write.
For those who can’t find the courage to write.
For those who, just like me, can be at a loss what to do with this Parkinson’s business.
For those who have a story to share, but are unable to do so.
It’s for you that I am sharing my story in Parkinson’s Magazine. Written (NL) by a careful editor, Astrid Smits.
This story is about me, about you perhaps, reader.
Thank you Dutch Parkinson’s Society, for allowing me to share my story.

It’s high summer. The day promises to be a scorcher. We’re sitting under an awning in Mariette Robijn’s garden. Armed with a fresh mint tea and a glass of cold water, I begin the interview. “The shoe’s on the other foot for a change” says Mariette, “I’m normally the one firing the questions, the one who’s ‘calling all the shots’. And people usually give a much tighter response than I’m about to now.” After my ‘go for it’, Mariette recounts her story, revealing when her Parkinson’s diagnosis was confirmed, how she coped with it and how her young family has adapted. Throughout, Mariette comes across as an extremely energetic, vivacious, confident and self-disciplined woman, full of humour. Jokes clearly play an important role in her life and that of her family.
“I received my diagnosis in September 2012. I went to the physiotherapist for something else and mentioned that my arm was a bit out of sorts. Which was undoubtedly caused by my heavy laptop use, hectic lifestyle and so forth. The upshot was daily resistance exercises with an elasticated physio stretch band. I persevered with this for half a year, but it didn’t really help. Later I had that same strange sensation, not only in my arm, but also in my foot. So, I struck upon the idea of going to a neurologist to rule out certain things. I went alone because, well, I’d never had anything serious before. I said, ‘It feels like my hand is a little sluggish.’ I had to perform a couple of exercises. Five minutes later, the neurologist said that I had a problem with my central nervous system. Then I caught something about neurotransmitters. He never mentioned the word Parkinson’s. I asked if I should be worried? ‘Yes,’ he said, ‘but I’m going to get to the bottom of it. Here’s a note for a DAT SPECT and an MRI scan.’”

And then?
“I left the hospital in total disbelief. I must be having a bad dream, surely? I had been handed a leaflet about the DAT SPECT scan, which is used to detect Parkinson’s. ‘Ok, but it definitely can’t be THAT,’ I thought. ‘They must use it to identify other problems too.’ Two weeks later I had Parkinson’s … afterwards of course, I could put two and two together. But so can anyone with a confirmed diagnosis. I mean, if you’re seriously worried about something you don’t go to the neurologist all on your lonesome, do you? I don’t know anyone who has Parkinson’s; it doesn’t run in the family either. I really had no idea what it meant. After one day I did, though. Only too well. My mind began to race, ‘Oh my God! I’m going to turn senile, I’ll no longer be able to think properly and I’ll probably start drooling.’ In my vivid imagination I saw myself like that within a week. In contrast, my husband calmly laid out the facts, which he illustrated with a graph. He said: ‘There are 100 symptoms. The likelihood that you’ll get all 100 is 0, the chance that you’ll get whatever you’re going to get within a week, is also 0.’ He then asked, ‘What is it that you think you won’t be able to do tomorrow that you could do last week, before that you knew you had it? What’s changed? Well? You can do this. Just get dressed and go see your client. Lipstick and heels, you’ll look great.’ It helps to have someone point out that nothing has really changed since the week before, when you were still blissfully unaware of Parkinson’s. In the beginning I was in total disarray because I never got sick.

How do you cope with it?
“I only know how I personally cope with disaster. It’s not the first disaster we’ve had to face and we survived the first one too. One of our children died shortly before birth. That’s how I know we can do this. Whilst it’s completely beyond comparison, the loss of your child is definitely worse, far worse. That loss gave us a sort of ‘tool kit’ for how to handle things. A tool kit that comes in handy every now and then. But accept it? No, I refuse do that, never, not Parkinson’s, and definitely not the loss of our daughter. It’s not about acceptance. When our daughter died, my grandmother said, ‘You don’t need to get over it. You need only reflect on it every now and then, and then you’re half way there.’ At least with Parkinson’s it’s about yourself, but your daughter … that’s intensely sad for us, but it’s actually about the future of a child and that’s insurmountably sad. Parkinson’s is an extremely nasty disease that affects me physically and our family as a whole. But our family is strong and I’m strong by nature. There’s not one day I think about staying in bed. I won’t do that. I just won’t.”

Busy
“I’m always on the go and I often contemplate how lucky I am, also with my family. For example, our eldest daughter recently said: ‘You shouldn’t make Parkinson’s your very first thought.’ It’s times like these that I realise: ‘How fortunate we are to have such children. That we can laugh ourselves silly in the face of all sorts of terrible things’. Like yesterday during our game of water bombs (the remains of which are still visible on the garden table, red). The day-to-day things keep you grounded. You derive pleasure from the big and the small things in life. Parkinson’s never forgets you, just as you never forget your child, but when you have fun, you truly have fun.” At that moment, almost as if on cue, a leftover water bomb bursts and we fall about laughing. Mariette continues: “We’re not all doom and gloom. I can cry, bawl, shout, but afterwards I just get on with it. I can still do most things and, what I can’t, I do anyway. The children are healthy and happy, and together my husband and I run a great business developing software for investors. I look after the communication, marketing and copywriting side. If I work too hard, my energy budget is already spent by Monday. And if I put in a ten-hour day, I tend to regret it the next morning. I can’t walk any more, can no longer use my hand properly and I feel like a wreck. Which is why I’m now learning to better distribute my energy, although I can be a tiny bit headstrong. Running your own business is also an additional source of stress. On average I work 30-35 hours a week. On top of that, I exercise five times a week, do fine dexterity exercises and then there are the children.”

The children
“The kids are used to me being busy. So, if I lie down on the sofa they naturally come and ask: ‘What’s wrong, can I help, would you like something to drink?’ They’re not accustomed to me sitting around doing nothing. At first they were frightened; mums aren’t supposed to get sick. That’s not how it’s meant to be! But they now see that I can still work, write my columns, put the washing on and do the weekly shop, so they’re not so constantly preoccupied with it any more. They might do a little more around the house, but that’s normal. After all, it’s not a bed and breakfast.” At this point her almost 15-year-old daughter enters the garden carrying provisions for her party later that evening. “They organise everything themselves,” says Mariette, not without pride. “The children know there’s something wrong with mum. But, for the rest, they just get on with their lives. Sometimes I say, ‘I can’t manage, you need to help.’ At first I was worried about it, but then I discovered these little plastic stickers. Which I now hang on the kitchen cupboard, stating who should do what and how long it should take. There were some initial concerns on their part, but because I had additionally noted the duration of each task, I was able to coax: ‘C’mon, it’ll only take 10 minutes (for example) and imagine if I had to do that all by myself.’ And then they get on with it. Together, we can laugh our socks off.”

Humour
“Our daughter (of almost 15) once made another good joke. I often send columns to the Michael J. Fox Foundation in America. I loved it, especially in the beginning, when I spotted a red dot in New York via Google Analytics on my laptop. ‘Yes! That’s him, he’s reading it,’ I thought back then. On one occasion I said to my daughter: ‘Now don’t distract me, he’s busy reading, so I can’t take my eyes off that red dot, not even for a moment!’ At which point she quipped, ‘Want some popcorn with that?’ Hahaha, that brings you back down to earth. I have regular readers in Canada and America. And I won’t deny that it’s cool to receive a message from Michael J. Fox, such as: ‘Mariette, we always love your sense of humour!’ Because to me this isn’t merely the foundation talking, for my feeling it’s Michael himself. I also participate in Michael J. Fox Charity Miles (www.charitymiles.org) – a sponsorship scheme where you log your sporting activities and for every mile that you walk a sponsor makes a donation. Which generates yet more reactions: ‘Mariette, thanks for running for us, thanks for supporting us.’ That makes my day. My columns are about the way I cope with it. It’s a way of turning the tables. I like to poke fun at myself, to lighten things up a little. This doesn’t only help me, but others too. Which is evident from my reader responses. I once got an amazing compliment from someone who said: ‘I have huge issues with facial masking, except when reading your columns. After that I’m literally beaming all day’. That makes me incredibly happy. And then there are those who encounter a lack of understanding from their work colleagues and read out my columns to enlighten them. Again, that gives me immense satisfaction. If I can make just one or two or even ten people smile on a regular basis, isn’t that worth something? The Michael J. Fox thing is special, because it fosters a sense of connection. But when a total stranger emails ‘thank you’ completely out of the blue, that’s when it all makes sense. And you definitely need to be able to make sense of your life again.”

Lucky
“Health is not the absence of disease but rather the ability to handle a situation in a healthy way. Which brings us back to acceptance. The word acceptance irritates me; incorporation yes. If you can manage that, then that’s good enough for me. I also find the whole concept of letting go utter nonsense. Okay, admittedly I can let go of maintaining the garden or even the fact that I can longer write by hand. But there’s still so much you CAN do… Parkinson’s might be the denominator, but no one wants to be confined to a box. It’s just not you. Which also happens to be the title of one of my columns, ‘It’s just not you’. But for some reason you’re still ‘forced’ into that box. So you have to remember that you’re still the same person. Although you can never be entirely sure, because you don’t know what you would have been like without it. It’s difficult to distinguish what’s down to your illness and what’s not. You simply don’t know. That’s the tricky part. ParkinsonNet is extremely helpful, as are all of those doctors and healthcare providers who make it their profession to delay your problem, to postpone it. That’s great. But after you’ve lined it all up side by side, the accepting, the letting go, you seem to end up doing it your own way anyway… and again, I’m extremely lucky in that! Character helps, but for the rest it’s a question of trial and error. Humour helps too. For example, I’m continually having to wake up our youngest of 13 and literally drag him out of bed in the morning. In the afternoon, he says: ‘You know when I sleep best? Right after you’ve just woken me up…’ Or in the morning, when I’m struggling to calculate the fat percentages on the milk carton, the one that my son is happily busy with, and I say, ‘see, I can’t even calculate percentages anymore’. And my husband replies: ‘Yeah, but you never could!’ That’s what I mean by: I’m extremely lucky!”

“Can I say my hellos?
I’d like to say hello to our family and friends, as well as all those who take the time to send a thoughtful message or pop by with something nice, such as a box of chocolates, a pan of homemade soup or a handwritten card. Or who go out of their way to visit no matter the weather, come rain or shine. How amazing is that?”

Empirical living

When I hear just how much Mariette crams into her day, I find it a lot, even for someone without Parkinson’s. The interview has already revealed a Herculean list of activities. “Yes,” says Mariette, “and I also write a variety of pieces for the church, read lots of books and do all sorts of other things, like hosing down the garage, pruning our 15 metre-high hedge, fetching concrete slabs from the local DIY shop, driving with a trailer etc. I can’t do it all, but sometimes you have to do the things that make you happy, even if you know you’re going to pay for them later. Empirical living, I call it; just go out there, do it and see what happens. In business I refer to this as empirical enterprise: not waiting until everything is perfect, but simply getting on with it.”

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