I need your help - it'll take two minutes
...and you can do it on your phone or laptop *right now*
Thanks to the 86 of you who are subscribed to ‘Diary of a YOPD’ and the 202 people who took the time to read my last update.
Help this newsletter to reach more people by subscribing, sharing, and forwarding to others. If you have a Substack account, then likes, comments and restacks help too!
This is a quick update.
This is also a quick request.
I'm asking for a favour.
Would you please sign this?
What is it?
This is about the ‘Parky Charter’ - a list of five things that people with Parkinson’s need from the government but are not getting.
If this petition gets 100,000 signatures, then the Government may debate the contents of the charter in Parliament.
(Edit: I should add, this was devised by campaigning group Movers & Shakers and is backed by leading charities Parkinson’s UK and Cure Parkinson’s, among others.)
What is being asked for?
Really very basic things which outsiders may assume are in place already.
Access to appointments, access to information, access to care. An increase on the shockingly low amount of funding currently dedicated to researching this condition.
Why is this necessary?
Because life with Parkinson's is hard, gets harder as you go on, and is being made more difficult than it needs to be.
There are very few support structures in place for people once they are diagnosed. I found this firsthand last year.
Effectively, it’s: “You have a degenerative incurable brain disease, good luck!”
That initial period post-diagnosis is scary and lonely. Any kind of onboarding process would be an improvement.
Providing a list of available resources and suggested next steps really feels like a bare minimum, but not even that is guaranteed at the moment.
My own experience on the NHS so far has been very positive and supportive, but I've heard plenty of stories from other people with the condition which are far from this.
The UK ranks amongst near the bottom of the table for neurologists per head of any European country.
The number of people with Parkinson's is projected to double within the coming years.
This is not sustainable. And people deserve better.
100,000 signatures seems ambitious, though!
We don't need 100,000. We just need one, for now. Yours.
Then the next one, then the next one.
86 × (1+5) = 516
If everyone who currently subscribes to this newsletter signed the petition and could find five others to do the same, that'd be 516 new signatures.
If that process repeated itself four times over, it would result in 53,750 new names on the petition. More than half of what is required overall.
I'm not saying that it’s likely that the butterfly effect of this post will be ~50,000 signatures, but if it even results in 50, that's a step closer to the target.
Tell me what to do again
Sign da ting (if you're a UK resident)
Share it (anyone). Forward this email, WhatsApp the link to someone, put it in your Instagram story, whatever you want to do.
Tell people you’ve signed it (optional). Really crank up that peer pressure.
It isn’t a competition
I get it, there are a million good causes. all individually important to someone. Many of them underfunded and under-resourced.
We’re not asking you to prioritise this one above anything else.
It’s just one signature, please.
Thank you.
This week in the Parky blogosphere
Below are some recommendations on posts and people relating to Parkinson's which I believe are some of the best representations of the online #PDcommunity.
Talking of for Parkinson's awareness, here is former Green Bay Packers quarterback and fellow Parky, Brett Favre, attempting the ‘Stack Don't Crack’ challenge.
This seems like an American initiative, and there aren’t hundreds of people doing it, but it’s quite fun and has an early 2010s ‘Ice bucket challenge’ vibe.
Have a look at the #StackDontCrack hashtag on the post above and it might be interesting to see how PD manifests in varying ways in different people.
Reason to be optimistic this week
AI cracks superbug problem in two days that took scientists years
"I feel this will change science, definitely. I'm in front of something that is spectacular.”
Parkinson's. Incurable. For now…
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.
I have already but I love your presentation of this here! Thanks x