What is the point of World Parkinson's Day?
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This year is the first where I've had World Parkinson's Day marked on my calendar.
It's today, by the way. Happy WPD everyone.
It now feels like the sort of thing I should make a plan for, to mobilise around, to act in some way.
The issue is that, honestly, I'm not quite sure what I'm meant to be doing.
I asked this question on Bluesky a few weeks ago in anticipation of the occasion and received some typically thoughtful responses from the PD community on that platform.
Just as the condition itself doesn't manifest in the same way for everyone who has it, what this day means also varies from person to person.
For some, it is their day, a chance to seize the initiative, to shout about their cause.
If the other 364 days are filled with unseen or unknown difficulties, then I can see the attraction to every one day every year where people show an interest in the reason behind them.
In the early days of me writing this blog, I was struck by one commenter who said they finally felt ‘seen’ after recognising their own experiences in one of my updates.
If all World Parkinson's Day achieves every year is encouraging some extra empathy towards those battling it and a feeling of being slightly more seen by the world that alone feels worth it.
Creating a headline and raising broader awareness of the condition is an objective for others on WPD.
The Movers & Shakers podcast collective and campaigning group, certainly take this view and work hard to bring it to life.
World Parkinson’s Day - Friday April 11th - is our big chance to throw a spotlight on the world’s fastest growing neurological condition and exert a bit of pressure on lawmakers to improve care.
The group is organising a ‘Big sing’ to create a PR-able stunt near the Houses of Parliament in London.
This aligns with its bigger-picture objective of getting 100,000 signatures on the ‘Parky Charter’ to try and force the Government into facilitating better living conditions for those with Parkinson's.
Please do sign that if you're in the UK and haven't yet done so.
That's where myself, my partner, and my daughter will be today. If you see this in time and are in the area, then do say hello.
Why are we doing this? Well, it's not purely out because we’re desperate to belt out a tune in public. Especially, in the case of my six-year-old, a song which simply refuses to be "Cruel Summer" whichever way you look at it.
I suppose it boils down to a desire for a shared experience and being part of a community.
If you have Parkinson's then it is on your mind constantly. Maybe it's nice to have an excuse to be around people where you're temporarily in the majority in that sense. I guess we'll find out in a few hours if that is the case.
I expect my attitude towards World Parkinson's Day and the condition itself will change as the years go on.
Awareness, fundraising, and empathy are all valid objectives for anyone organising activities on this day.
This year my main aim is just to be around loved ones and other people who can relate.
For a condition which can affect or strip away many aspects of regular life, what it can't take away the power of community and a human connection.
If you do one thing today…
Sign the ‘Parky Charter’ petition here.
If you have time to do a second thing, share it with someone else and encourage them to do the same.
If it helps, I've created an Instagram post which you can share to your story explaining all the steps involved and reasons why it's important.
Get in touch
If you'd like to discuss anything related to this newsletter or something I've written, you can email me, leave a comment below or reach me on a couple of different social media platforms.
One final thing…
A main reason for writing this newsletter at all is to find and connect with people in a similar position.
YOPD is a niche condition and potentially a lonely one for people without a physical or digital support network.
Please feel free to share this your networks to help it find someone who may benefit from being part of a relevant community.
Welcome to the club you would never have chosen on your own…7 years ago I outed myself on social media as a YOPD and have been publicly bearing witness since. Much easier to find connections than it was back then. I’m glad to know you.