Parkinson's, a preemptive 2025 'Wrapped', and attempting to find balance
Adding up the things I hope will start to count
Thanks to the 54 (+11) of you who are subscribed to ‘Diary of a YOPD’ and the 180 people who took the time to read my last update.
Help this newsletter to reach more people by liking, subscribing, sharing, and forwarding to others. If you have a Substack account, then likes, comments and restacks help, too!
There is no shortage of brands trying to tell you exactly how you interacted with them over the last 12 months, whether you’re interested in hearing it or not.
Spotify's annual ‘Wrapped’ campaign was a fun jumping-off point for this modern trend, even if audioscrobbling and Last.fm have been a thing for more than 20 years.
Like everything else online, it has lost some of its innocence and fun over the years. Going from a share-through-your-fingers record of consumption to another curated reflection of the image someone wants to portray, helped by the ability to self-select which audio does and does not count in the end-of-year tally.
Nonetheless, marketers of all types have decided that they, too, need a Wrapped.
Your financial institutions, your sports teams, your streaming services, your food delivery vendors and every other kind of app on your phone has likely sent an email in recent weeks recapping your activity for 2024 in bright colours with cutesy graphics.
And, honestly, Monzo, I don't see the news that I'm among your top X per cent of spenders as the cause for celebration you are making it out to be.
Being told what you did last year inevitably makes you consider how you will prioritise your time and behaviours in the next.
And the thing with having Parkinson's is that it's time-consuming.
Firstly, everything is a bit slower anyway with a movement disorder. So tasks take longer than they once did.
Secondly, there is a lot more to be done in order to try and slow down further degeneration.
I've been adding up the things that I should now be aiming to do on a regular basis and the time they take.
Many people reading this will be far more knowledgeable than me about what an optimal Parkinson's lifestyle looks like (and I'd welcome any comments with suggestions or advice).
However, based on what I've been advised so far from various professionals, the following is the starting point:
Five high-intensity cardio sessions a week of at least 30 minutes each.
Three or more strength/balance workouts per week, with weights, of at least 30 minutes each.
Daily stretching. Realistically, each session will be at least 15-20 minutes.
Daily ballistic movements, such as those outlined in the PD Warrior program, for around 20 minutes at a time.
Three hand-strengthening and dexterity sessions a week. Each lasts for around 30 minutes.
That's 610 minutes each week, or roughly an hour and a half every day on average, without adding on things like driving to and from the gym, or showering afterwards.
If I were to achieve this weekly goal consistently, which I won’t, then my personal ‘YOPD Wrapped’ next December would have a headline along the lines of:
“Way to go! You spent 530 hours of 2025, or just over 22 full days, attempting to manage your chronic condition.”
The point of this observation is not to moan - I'd rather have options for mitigation than not. Plus, clearly there are multiple benefits to activities like regular high-intensity exercise and strength training beyond solely a means of Parkinson's management.
I’m also lucky to (mostly) be in a physical condition where I can still enjoy exercise and have the choice of how to do it.1
Philosophically, I just find it interesting to think about how much time is it worth sacrificing to try and make the best of the remaining time you have?
Also, where do you find an extra 22 days in your year on top of work, sleep, and adequately parenting two young children? That's without being a good partner or finding time for friends, entertainment, hobbies or passion projects.
Prioritisation and adaptation have to be the key words. For example, a hand-strengthening workout could be done off-camera while in a video meeting. In theory, at least.
I am a long way from finding the optimal daily routine, but certain activities are now a necessary part of it rather than a lifestyle choice.
The challenge is not whether you do them or not, it's when you fit them in and what you replace to do so.
I knew there would be ongoing challenges after being diagnosed with Parkinson's, but I suppose I didn't think about how much admin it would entail as well.
I'd love to hear from fellow Parkys - and anyone, really - about how you fit everything in and attempt to find balance as best you can.
In the spirit of Wrapped, I thought I'd share some thr final 2024 statistics from this blog.
As shown at the top of each edition, it now has 54 email subscribers and a higher number of regular readers. My updates have been viewed over 800 times in all since starting this around three months ago.
More importantly, I've had numerous messages from people with Parkinson's or relatives of those with it to say how they found comfort in some of my words or felt seen by some of the scenarios described.
Those notes alone make the whole thing feel very worthwhile.
I started this project as a means of trying to raise awareness of the condition, while making meaningful connections.
My former housemate Ben2 sent a voicenote a few weeks ago with a few ideas about how to take this forward. Following that, I've pondered how to expand those efforts in the year ahead.
While I find writing this blog and the outlet it provides very enjoyable, I do feel like my overall efforts need more focus and a defined purpose.
Also, perhaps some kind of video or audio capability is necessary to truly cut through in the modern media age, daunting as that feels.
If you're reading this and have an idea about how I could make more of an impact, then please do share it.
Finally, and very genuinely, thank you to everyone who reads this, has left a comment, or subscribed over the past three months and shared it with others.
It's all hugely appreciated.
Onwards with optimism and intent to 2025.
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.
Although running anything more than a few kilometres in one go is becoming harder due to one leg being slightly less willing than the other, and it really would make me very happy if I were ever able to bowl a cricket ball again. Maybe these things will be possible once medicine becomes a necessity.
(Ben’s excellent podcast, It's Only Kids Football, is well worth subscribing to. See the Instagram for a sample of what it's all about.)
4 day week gets those 22 days... I think even a 4.5 day week would