The World Parkinson’s Congress has selected its Blogger Partners for its 2019 Congress in Kyoto, Japan. I had a lot of fun as an “Official Blogger” for the 2016 Congress in Portland, OR, but didn’t apply for this round since it is unlikely I’ll go to Kyoto (too far). I’m delighted to see that some of my blogger buddies from Portland are on the list, and I’ve started to take a look at the blogs by the new folks.
One of them is Mariette Robijn, writing in Dutch and English. I thought her writing style was hilarious.
And here is an example. (I’d be curious if people without Parkinsons find this as hilarious as I do…?)
Some of my best friends don’t have parkinson’s, but I still respect them. It can be hard though, to know exactly what to say at the right time without putting your foot in it.
I mean, if you don’t have parkinson’s, what DO you have? Can’t be anything special, now, can it.
But that’s where we are wrong, we, the people with parkinson’s. So to help you in your next encounter with someone who very clearly does not have parkinson’s, taking you quite off guard, I’ve drawn up a little list of things to say or ask.
1. I respect you for who you are, even though you appear to be in perfect health
2. It must be hard to know you can still get parkinson’s, but hey, we (pwp) too can suddenly come down with something as well, just google for a while and take your pick
3. From both a statistical and a life time expectancy point of view, the chances are high that you’ll get some frightfully furious freaky disease that would render parkinson’s pale in comparison. That must be quite hard to deal with, have you accepted this statistical fact yet? I’d go straight into denial mode, but then again, I can’t even begin to imagine what you’re going through. Oh well, it might never happen.
4. When did you first notice you were so incredibly healthy? Have you seen a gp? Man, you must have had so many mri’s and what not to finally have confirmed what you suspected all along: I’m healthy.
5. So what do you do to stay healthy? They say it’s very good to get as much screen time as possible, and be careful with those weird exercises. You don’t want to get yourself injured or worse, do yourself a mischief. Naah you wouldn’t, would you?
6. How do you fill your time? No exercises, no walks, no visits to an occupational neurological physiotherapeutical speech psychological health care professional. I’m really sorry your life is so boring. And lonely, no patient groups to go to, although there might be special groups for people without parkinson’s or for those without any health issue whatsobloomingever, would you like me to look one up for you in your area?
7. Does it run in the family?
8. You can’t tell from the outside that you are in fact v healthy, I mean, you don’t look healthy at all, you’re overweight, your skin is rashy, pale complexion….people won’t expect you to be healthy, how do you come to terms with such a misconception?
9. Well, all the best.
I hope that you find this list useful. It’s a first, I think, tips on what to say to p wo p.
Please don’t hesitate to send me your top tips on what to say to people without parkinson’s.