Parkinson's, the end of the honeymoon phase and storytelling
It has been a while, and here are some of the reasons why...
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Hello. How are you?
It's been longer than I planned since I last sat down to write.
Given that the enjoyment I get from speaking my brains on here, along with the connections I've made as a result, are two of the only actual positives of being diagnosed, it is neither intentional nor ideal to have been inactive for more than a month.
This was the case on Substack, which was fast becoming my favoured digital platform, but also Bluesky - one of the few social media platforms where using it still feels more like time well spent.
My fondness for both stems in part from the the welcoming and warm PD communities which exists on them, but despite both apps being prominent on the home screen of my phone, I’ve recently encountered a mental block when thinking of contributing to either.
Primarily, I think this is because, for a few reasons, January wasn’t a fantastic month. Not terrible, but less enjoyable than simply bleurgh.
If I was ranking the be factors I'm meant to keep in balance in the style of a “What's Hot, What's Not?” sidebar in an old newspaper, celebrity gossip column, it’d look something like this.
⏫ Exercise: A positive! Regular gym sessions. Feeling stronger, fitter, and more flexible than I did at the turn of the year.
🔼 Healthy diet: Improving but with work to do. As evidenced by the milkshake on the side as I write this.
↕️ Active socialising: Net neutral. A really fun getaway weekend in Sussex covered a lot of passivity. February has already been an improvement in its first week.
🔽 Stress: Too much in too many places. Unexpected spikes combined with a higher-than-ideal baseline.
⏬ Sleep: Becoming a bigger problem. I can't remember the last time I had a ‘good’ night. Restless and uncomfortable.
During my two weeks off over Christmas, I had sufficient downtime to unwind and actually relax. The sort of mental relaxation which creates room for spontaneous streams of creativity, for ideas and strategies to form, and the excitement which comes from one flowing into another.
I consciously thought to myself more than once: "Hold on to this feeling when things get busier. Keep your mental bucket at a level where you have space for this stuff."
I did so in the knowledge that when that first round of school-run mornings, double-digit unread inbox notifications and looming deadlines returned that it would likely fade away.
Like an ageing boxer whose punch resistance is fading, I find myself less resilient to the accumulation of everyday micro-stressors. Slower to regain creative thought ot composure. Getting out for a run, for example, no longer provides a full reboot.
While I'm not one for New Year's resolutions, January inevitably conjures thoughts about what lies ahead.
Typically, that is tinged with optimism and thoughts of new possibilities, which it still is, but having a degenerative condition means that the idea of emerging from the forthcoming 12 months in a stronger position seems unviable, rightly or wrongly.
When the speed of that degeneration varies from person to person, the challenge is to keep those five aforementioned plates spinning, spinning, spinning for as long as you can.
The ease at which you can spin them now is the easiest it will ever be.
It struck me at some point in January that, previously, I’ve just always had confidence that I would eventually overcome whatever hurdles inevitably appeared over the course of any year.
Now, I think it's about cultivating an environment and lifestyle which means those obstacles are fewer, smaller, and further between.
Also, to phrase it badly, the Parkinson's honeymoon is now over.
It is now officially Year Two. It's no longer a novelty or even notable for the most part.
You've long since been diagnosed. You told everyone you think might be interested so long ago that some will have inevitably forgotten about it.
You have passed your Parky probation period.
It's unwanted, it's physically and mentally difficult, but nobody cares about it as much as you do and nor should they.
Maybe having Parkinson's justifies a more selfish attitude in that regard. The science is straightforward and if you are not doing what you can to keep those plates spinning as smoothly as possible, then that's on you.
In a world where you can't keep adding more metaphorical weight to your shoulders, the question is what do you discard, disregard and deprioritise from the year ahead in order to give yourself the space to focus on the things that matter.
One of the key items on that list of things which do matter to me is continuing to build meaningful connections with people in a similar position worldwide, digitally and physically.
And, at least, I wrote down some of the YOPD-related ideas I had in this regard at the turn of 2025.
I'll use this blog as a means of holding myself accountable to ensure at least some of them become a reality.
This week month 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.
While I may not have been active in contributing much over the past month, I've been consuming a fair amount.
One thing I debated last year after deciding to start talking about my experiences, was whether to use my pre-existing social profiles to do so or to start separate YOPD-specific profiles from scratch.
I opted to use my existing profiles because this was not something in my life that I could comfortably compartmentalise. It's not a team I support, or a hobby I enjoy which you start to create content about. It is a part of me, not a side hustle, and runs through everything.
The more vulnerability you can show, the more people will be able to relate. I see examples of that every day in this community.
Take this post, for example…
I haven't watched ‘Shrinking’ on Apple TV yet, but must have seen that at least 10 people share this clip on various platforms.
On each occasion, the comments are full of people coming together like those underneath Allie's post above.
There is no stoic way to publicly document your experiences with Parkinson's. It is inherently vulnerable exercise whether you are discussing your symptoms, documenting the weeks before a brain operation, sharing news on potential treatments or dancing on a boat to Duran Duran.
Everyone has a unique story to tell and in this community there are some very talented storytellers.
On that subject, I must also shout out the new Handshake initiative from the seemingly indefatigable
.
Emma has compiled and built a directory of Parkinson's resources, while also posting a weekly selection of curated newsletters, vlogs, podcasts, and updates. (The embed above is an example from mid-January when she was trying to highlight one of my previous posts.)
It's exactly the sort of thing which was needed and would be the first destination I recommend to anyone who is newly diagnosed and finding their feet in this world.
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 think this initial phase of any life limiting condition (ok, Parkinson's) has its beginning, middle and end. One is desperate to find out everything about what you are and what you will be dealing with. 9 years in for me, I try to do all the right things but sometimes you just need a bl##%y break from it!
Thank you!