Parkinson's, and a metaphor involving a bear made of ice
Read on to find out about why it's fine to stop reading at all
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Since I was first diagnosed last June, variations of the same metaphor keep coming to mind.
Perhaps saying typing dictating it out loud will help others determine if it is relatable or makes any sense. Let's see...
We know that, for now, at least, Parkinson's is both degenerative and incurable.
Part of the challenge of coming to terms with it, if anyone ever does, truly, is the idea of the onset of tangible, physical decline being so visible to everyone.
You're kind of like an ice sculpture on display at a party or in a gallery.
It is melting before your eyes, but the speed at which the solid turns to liquid depends on the surrounding conditions.
If you stare at it consistently, you may not notice a difference. But if you leave the room for weeks, months, or years at a time you return to a different, damper sight.
To a certain extent, this analogy is true for everyone. It's called aging.
Perhaps, though, with Parkinson's, the thermostat in the room has been turned up one or two notches.
In this metaphor, efforts to effectively manage the condition are akin to running a treadmill next to this bear made of ice.
Running on that treadmill is akin to a lifestyle a handle on the five key factors of managing chronic conditions - good sleep, minimal stress, a social lifestyle, a healthy diet, and regular intensive exercise.
If you can just keep your feet moving and that belt rotating, you can help to lower the room’s temperature.
Not as low as you need it to be, of course, but cooler than it would be otherwise. Enough to slow things down a bit.
What happens when you don't have those five factors in check though?
What happens when life conspires to rally against being able to keep all or some of them under control?
Or worse, twists them in the wrong direction?
The treadmill slows down. The temperature edges upwards again slightly.
An example would be a period of medium-high stress.
That is never good for anyone. However, the effects feel twofold.
I find it a self-fulfilling prophecy because the idea of being stressed is additionally stressful in and of itself.
When you start to feel a physical symptom of stress - headache, increased heart rate - your mind combines that with the knowledge that stress is bad for your Parkinson’s management to exacerbate the impact of it.
In terms of this metaphor, it feels like a heater on the other side of the bear turning on to blow air at it. Not only is that undesirable, but you have to stop running on the treadmill to turn it off because only you can affect it.
This double-down effect may not be scientifically how the brain/body works, but it's how it feels.
The more you are scared of it, the worse it is. Mindset and attitude become increasingly important to the overall management of it.
Mental strength and a disciplined lifestyle allow you to stay on the treadmill for longer periods of time and control the temperature in the room as best you can.
Erratic behaviour or a general lack of control have you regularly stopping to turn off one or more heaters nearby before attempting to pick up where you left off.
‘Control’ feels like the operative word. Everyday factors like life, work, and children can make it difficult to establish, but that’s the challenge.
“Don't get it right, get it written”
In the spirit of an actual diary, and because I don't want people to associate these emails with feelings of melancholy automatically, here are three things I've enjoyed recently. Because life goes on.
The ICC Champions Trophy final took place today, with India’s victory a mostly procedural ending to an enjoyable tournament despite England's poor showing.
Cricket is a sport which attracts good writers and
, who I first became aware of when I borrowed the initial installment of his autobiography from Chingford Library many, many years ago, is one of them.His coverage of the tournament on his Substack and podcast has been consistently thought-provoking, and he isn’t afraid to veer from the news cycle to add in some anecdotal colour from time to time in the style of his books.
Big Boys, Channel 4 (UK)
No spoilers here, other than to comment on how the final two episodes of series three completely put me on my arse.
What a show this is. A great cast combined with brilliant writing. It'll make you laugh, it'll make you cry, it'll make you think.
It deserves all of the critical acclaim it has received, and its creator is right to say (spoilers) it deserves a bigger viewing audience.
This app is still in beta mode, but I've enjoyed playing around with it. It's fairly manual, but one for those who are interested in the concept of the fediverse or generally pine for a more helpful and positive social media landscape.
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.
has been documenting his journey with deep brain stimulation (DBS) surgery, and I recommend reading all the various phases of it on his Substack.It's a procedure that almost everyone with Parkinson's will be aware of, but it is fascinating to see the process documented in such an honest and transparent manner. Thanks for sharing, Piet!
If you have to prioritise, read his latest “DBS Programming: The One Where We Flip The Switch!” and enjoy the wonderful Bee Gees-inspired sign-off.
Reason to be optimistic this week
This seems... significant? Maybe. Hopefully. Who knows.
There's no need to read, subscribe or apologise
After getting through that Kafkaesque / Year9CreativeWritingesque blurb at the top of this page, you may find it hard to believe anyone would not want to read this newsletter regularly.
I've met up with two or three people recently who, early in the conversation, were almost apologetic for not yet having read my most recent musings on here (I should point out, I didn't ask if they had).
I am grateful for everyone who has subscribed to this newsletter and talks to me about it, but I am also not the least bit offended by anyone I know who doesn't want to.
It's not for everyone, of course. I wish it wasn't for me. There's no sense of duty required here.
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.
Mindset is something I’m thinking about at the moment too. Carol Dweck’s book is on my list. I’m also thinking of getting hypnotherapy to unblock self limiting beliefs.
Thanks for the shout out Iain!