I once said to someone who gave me unsolicited advice on how to deal with Parkinson’s: look, I might be losing my health, but I’m certainly not losing my mind. So if I need advice, I’ll ask for it, okay? And you might or might not be on my preferred shortlist of advisors. That was a bit harsh.
And I moved on, becoming increasingly familiar with the challenges that Parkinson’s would keep throwing at us. Most are, obviously, rather unwelcome. But hey, I won’t be deterred from my Own Grand Scheme, not for one single moment. My vague Grand Scheme of Important Things that I will accomplish. No matter what.
What friends tell me
Friends tell me to take it easy. But how, exactly, am I supposed to do that? The same friends tell me to try and enjoy life a little bit more. They have a good point! But again…just how and when, exactly, am I supposed to do that?
Me and My Friend swap places
Then one day I realise – I could quite easily have been that friend, giving ‘me’ advice on how to deal with Parkinson’s. And indeed, Me and My Friend decide to swap places. The Friend feels more than qualified to dish out wise advice to this slightly chaotic copywriter with Parkinson’s, who’s fast approaching 50. And in my brand new role as My Friend, I’m also quietly confident of a sure-fire hit with my nice, practical list of ‘Wise Advice’.
The 10 things My Friend tells me
What on earth do you think you’re doing, working 40 hours a week? How many other almost 50 year old women with a family, a business to run, voluntary work and goodness knows what else, work such long hours?
You take exercise extremely seriously, super girl, which means that you’ve faced the gravity of your condition. Compliments where they’re due – you might be scared of Parkinson’s, but you’re certainly not scared of taking action. You’ve embarked upon your journey with courage.
You seem to suffer from minor balance problems. You do realise that you are not to blame? You might be the one who has to adjust or compensate, but you mustn’t forget that you don’t have to deal with it alone.
4. Proud of…?
You’re happy with your children, husband, family and friends. You’re proud of them, admire them even. Do you constantly think about their mistakes? No, quite the opposite! You like and love them for who they are, regardless of any mistakes. So, take a gentle look at yourself, dear copywriter – because you are who you are. Parkinson’s is undermining your confidence, but think about it. Would you stop liking a friend just because they had Parkinson’s?
5. Cure, care, degeneration, progression
Words that cross your mind every day, every hour in fact. Words that can’t possibly help you. There’s an entire dictionary of other more productive words to choose from, something that should come as no surprise to you, dear copywriter. And you know what, these words are just as much a part of your personal vocabulary as any others. As your perceptive daughter once said: don’t make Parkinson’s your first thought or word.
6. Likes and shares and retweets, checking google analytics
Good for you, it’s all part of your job. But didn’t I spot you eating ice cream with a friend the other day? You looked so relaxed chatting, shivering a little from the ice cream. Or perhaps it was the evening chill? You enjoyed it – you will treasure that moment forever. Seek out more such treasures, there are lots with your very name on them. Many with multiple names, because the finest treasures are always shared.
7. Future. Scary, scarier, absolutely horrific
Do you really think that you can add one single millimetre to your height, by stressing about the future? You want to enjoy that freshly baked pecan caramel pie right now, don’t you? Enjoy the pie, it’s meant for now. Not for that dooming looming blooming future that you’re constantly fretting over.
8. Support Team
You frequently mention your support team. It shows your appreciation and gratitude. But don’t forget – you’re as much their supporter as they are yours. You’re on the same Team, remember.
9. Tai chi.
Mindfulness. Yoga mat. Need I continue, dear copywriter? (Hey! Now, that’s where I draw the line, My Friend! Don’t push your luck!). My Friend smiles patiently, bookmarking the Tai Chi website.
10. How about…chocolate
Delicious summer fruit, a well-earned snooze in the hammock in that jungle garden of yours, chats with friends, joking around the kitchen table, playing with your favourite power tools…how about all of that? (Aaaah, now you’re talking, My Friend, you know what a young onset Parkinson’s patient needs, I knew you’d understand! Thank you, My Friend!)
Me and My Friend are starting to resemble one another.
What?! No! You’re really telling me that they’re actually one and the same? Well, I was aware that copywriters, particularly those of the creative, chaotic variety are famed for coming up with the most unlikely twists and plots, but…naaaaah…..really?
It’s up to you, dear reader. My Friend and I, we might be one, we might be two persons. The thing is, I tend to listen to my own good advice only. Which, I just so happened to have received from My Friend.
Mariette Robijn, April 2016, The Netherlands
— NPF (@ParkinsonDotOrg) 18 april 2016
NPF: ICYMI – check out Mariette’s wonderful blog! https://t.co/Lq0iIpyKPh