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I dictated the following into the Notes app on iPhone on my morning walk to the tube station. (The below is lightly edited for coherence.)

I was determined to get something written today.

There is a book I once read called “The War of Art” by Steven Pressfield. The book’s basic theme is how creativity and ideas don’t just come on demand when you want them to. You have to dedicate time - you have to set aside time to write even when you don’t feel like it, in the pursuit of inspiration.

The book talks about the concept of the muse, where creativity stems from. And how it has to be tapped into, tuned like an old radio dial. You don’t just press a button and immediately hear a clear signal.

So here I am carving out time for the first time in too long, carving out some time to dedicate to this blog again, and share some ideas I’ve been having recently.

My lack of updates has not been due to a lack of ideas.

This blog is something I’m proud of, and the failure to update it for more than three months (something I’m not proud of. It’s not intentional. It’s too long a period to recap everything which has happened, but broadly it’s been a quarter of ups and downs.

Because one of the key things I’ve been thinking about a lot over the past few months is how communication from a number of mediums is just harder now. It takes more effort, it takes longer, it takes a determination which isn’t always there.

Then I got to the station, where other people are around, and you kind of have to stop talking out loud to nobody.

I should have said. The above was dictated on the morning of July 15th.

That three-month absence from posting to this blog is now nearly eight months.

Again, it has not been due to a lack of ideas.

As I was saying above before cutting myself off to walk into the ticket hall, Parkinson’s makes communication more difficult.

This is especially true when you are trying to convey something meaningful or personal which requires time to think. To construct, demolish, and rebuild thoughts until they resemble the point you’re trying to get across.

Quick and instinctive ideas, messages or replies are only slightly easier.

When using a laptop, I’m now largely typing with one hand (left) while offering token gestures to the other - in the style of when trying to manage a toddler who wants to ‘help’ you with a task - to keep it from feeling left out altogether.

“OK right hand, I want you to perch carefully above the four arrow keys. Be ready to press them whenever required…”

“Yes, right hand! Great job pressing the Enter key. High five!”

I now largely use dictation software in the form of Wispr Flow for passages of text or daily replies to emails, etc. As good as that is, and it is the best software I found for the task, it doesn’t avert the need for a manual review and edit(s) of almost every sentence you write.

So your choice is between slow and one-handed or quicker but with the need to rewrite as you go, and be in a location where you can speak out loud without interfering background noise or verbally intruding upon the nearby audience, which has no choice but to hear.

That same dictation software has an iOS app, but the social limitations still apply. Which explains, in case you were wondering, why the text quoted above was dictated on a 6:45am walk to the tube station. It’s a rare everyday opportunity for outdoor solitude.

Typing on a phone is a similarly one-and-a-half-thumbed affair. However, the need to hold the device, combined with the slight tremor in my right thumb, opens the door to autocorrect errors and unwanted punctuation.

In a personal and professional world where more people are trying to contact you via an increasing number of means, around the clock, the pressure to (slowly) reply in a timely fashion builds cumulatively.

In the personal and social senses at least, you don’t mind the inbound. Connection matters. You want the conversations, the humour, the links, the ideas, the recommendations, the invites.

However, much like the delay in updating this blog, despite having something to say, the impediments to quickly replying, combined with the flow of new updates to take in, can mean you miss certain moments entirely.

Is this post just an elongated way of apologising to people for being poor at keeping in touch? Perhaps.

In-person conversation should be the way around these issues, but in the 18 months since diagnosis, I’ve learned that few things remain as straightforward as you’d like them to be.

Parkinson’s can affect your speech and communication in a variety of ways. This page on the Parkinson’s UK website provides a good summary.

Changes I’ve noticed include a quieter speaking volume (hypophonia), a slight stammer on specific sounds and occasional speeding up mid-sentence.

These are all entirely common symptoms, although according to my neurologist medication (more on that to come in a future post) does little to treat these ‘axial’ impacts compared to the improvements it can have on motor symptoms.

I’m in the process of being referred to a speech and language therapist for regular vocal exercises to try and develop my decibel levels and become more comfortable speaking at what feels internally like a higher volume. Another addition to the optimal weekly routine.

I’ve never had anything like a classically ‘loud’ voice, but operating at this lower volume quickly becomes demoralising.

Consistently being asked to repeat yourself is one thing, but the prospect of socialising in noisy environments such as a pub has become mildly daunting knowing that you’ll likely spend the majority of the time struggling to be heard.

The temptation is to avoid putting yourself in those settings but that is equally isolating albeit in a different way.

Be it typing, tapping, or talking, communication just requires more effort these days.

Whether it be the extra focus and concentration needed to steady yourself and send an accurate message at the first time of asking, or the extra breath you take to provide an adequate oomph in your voice to try and seamlessly take part in a group conversation.

Actions and behaviours which were once instinctive now require a degree of thought and preparation that wasn’t previously necessary.

The frustrations of having a condition like Parkinson’s are 50% the new physical realities and 50% the energy levels required to navigate them with time-consuming and only slightly adequate workarounds.

So, while it may take longer to produce posts like this than I would like, the catharsis which comes from having a forum where you can be heard and understood at scale is worth the trade-offs. For now, at least.

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This week in the Parky blogosphere

Below are some recommendations on posts, initiatives and people relating to Parkinson's, which I believe are some of the best representations of the online #PDcommunity.

—

Young Onset Online Tea Break

On the subject of connection and understanding, the second Wednesday of each month presents an opportunity to meet other people with YOPD in a relaxed online setting.

Talking to strangers on Zoom may not be everyone’s idea of fun, but I have joined, I think, three of these sessions now and I’ve got progressively more out of each one.

It’s 45 minutes a month where you can breathe out and unapologetically be yourself around people who ‘get it’ and support each other.

You have to engage in and support initiatives you want to see in the world. The next one of these sessions is Wednesday, December 10th at 11 am. So, if you see this in time, send me a message and I can pass on the details of how you can join in.

—

All good things…

This platform recently saw the unfortunate but completely understandable departure of . You can read her farewell post in full at the link above and an extract below.

Her “Who Stole My Dopamine?” newsletter was the first I found when searching for online Parkinson’s voices, and one of a few which helped convince me to start sharing my own experiences on Substack. Her writing on the subject was expressive, warm, and relatable.

Yet, when your energy reserves are finite and diminishing, Parkies have to be unfortunately selective about where those energies are directed.

I’m stepping away before this becomes just another sad, slow chronicle of decline. You deserve better. We all do.

So this is me saying goodbye. Thank you for every story, every laugh, every bit of love you’ve thrown my way. You’ve kept me upright, at least metaphorically, when my actual body refused to cooperate.

Remember that degeneration isn’t next week. You are still you. And humour is armour even when your trousers are backwards and your bra strap has staged a full-scale rebellion.

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One further thought from the last eight months

This update may not have been the cheeriest read, so I’m loath to finish on a sad note, but I recommend watching the interview below with former England rugby player Lewis Moody.

Motor Neurone Disease is not the same thing as Parkinson’s, and this is not an attempt to compare the two conditions, but some of the themes in this conversation struck a chord with me.

His description of seeking treatment for a seemingly innocuous shoulder pain, to being referred to a neurologist, to being given the unwanted news of an entirely different future to what was previously planned will be relatable to many in the Parkinson’s community.

People who are seriously or terminally ill are always called ‘strong’, but the clarity and selflessness with which Lewis speaks about his and his family’s outlook is genuinely powerful and motivating.

The world is full of people walking around being given life-changing news every day.

If all anyone is guaranteed is today, then actively do what you can to make it a positive one for yourself and others around you.

Watch the full interview (UK only) here, or a snippet below.

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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

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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.

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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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

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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.)

Sign it now

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.

Sign it now

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.

Share

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.

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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.

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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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

Subscribe now

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.

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“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.

• Surf, by Flipboard

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.

Leave a comment

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.

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Reason to be optimistic this week

This seems... significant? Maybe. Hopefully. Who knows.

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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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

Subscribe now

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.

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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 .

Handshake - Discover. Share. Connect

Building Handshake - Foggy Brain Time

Read more

a year ago · 4 likes · Emma Stubbs

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.

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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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

Subscribe now

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.

Leave a comment

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.

Bluesky | Instagram | Threads

Leave a comment

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.

Share Diary of a YOPD

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!

Subscribe now

December 4 marked six months to the day since I heard the words: “You have Parkinson’s”.

Or rather, I heard a reluctant confirmation in response to my seeking clarification.

Consultant: “So your head and shoulders MRI looks normal.”

Me: “Great.”

Consultant: “And your DaT scan shows signs of abnormalities. So…”

Me: “…so you’re telling me I have Parkinson’s?”

Consultant: “Yes. Sorry.”

Arbitrary anniversaries prompt reflection and I’ve been thinking about what I’ve learned, gained and lost since finding out.

Given I was recently lucky enough to spend Thanksgiving in the US for the first time, in that spirit, it is tempting to prioritise the positives.

But, of course, life with Parkinson's is not an endless list of joyful endeavours.

Consultants don’t shout 'Congratulations' at you when breaking the news. They offer consolation.

And while I have no desire for this or any other post to turn into a long list of moans or complaints, I do feel an obligation to be real. Anything else feels almost disrespectful to those suffering from it a lot worse than I am.

There is a chance that I get carried away with the positive feedback I've received so far from writing this blog and begin to pen future updates in a way that almost games engagement rather than offers a true reflection of my experience.

Ricky Gervais often recites a quote along similar lines: “To lead the orchestra, you’ve got to turn your back on the audience.” It's always stuck with me.

The reality of the first six months with a condition which is presently incurable and degenerative is that, unsurprisingly, it isn't that great.

When I first started reading up on the condition, I saw stories of people taking months or even years to accept and process it.

For me, there was around 4-5 weeks of grief-like feelings in the day and literal nightmares in the evening before, to lift a phrase from lockdown, I began to approach my ‘new normal’ more constructively.

The reality is that everything seems double-edged. New positives and negatives are being created in equal measure.

There is a sense of liberation to suddenly being given license to prioritise things that make you happy, but the list of things you're physically able to do with a movement disorder which is taking root in the right side of your body will reduce.

You gain greater clarity on topics such as the optimal work/life balance, but you also have to accept that your career trajectory and earning potential have likely diminished.

Professional ambitions and the ability to take risks now play second fiddle to pragmatism and the necessity to save for a future where you won't be able to cope with working in the same way or may need to pay for extra care.

As evidenced by my perplexing-to-some decision to travel to Wisconsin in wintertime for a week to watch the Green Bay Packers play, I'm trying to chase joyful experiences and more consciously look for extra snippets of satisfaction in the ordinary day-to-day.

A high-profile sufferer of Parkinson's gave me the advice to always have something in the calendar that you are looking forward to. There is also a sudden need to front-load your life if only to help stave off the fear of the unknown future and how this lack of dopamine will manifest itself.

People who I've told about this condition or met because of it have, by and large, been really helpful and supportive. For example, the specialist staff at the hospital I attend have been fantastic. The reassurance this provides slightly softens the realisation of a life where regular hospital visit will always be a thing for you from now on.

This new normal opens the doors to new networks, along with those you are now consciously manufacturing, but you walk through them a less confident person with more insecurities.

Even in just a few months, I've been pleasantly surprised by the number of online connections I've made simply by writing about my initial experiences here and how much I've come to value the reciprocal support of strangers in similarly shaky boats.

The Zoom calls put on by Parkinson's UK or Spotlight YOPD, where you hear from others with the condition about their struggles and solutions, are undoubtedly sobering, but are also some of the times since June when I have felt most relaxed and hopeful in a strange way.

The physical reminders of Parkinson's are always there from morning to night, along with the thoughts which accompany at them. The bad voice whispering into your ear, sitting on top of your bad shoulder.

Yet, overall, six months in I feel in a much better place than I did after one month. I have no doubts that that is partly due to the decision to learn about it, write about it, and approach the whole thing with more transparency rather than trepidation.

The worst is ultimately yet to come, but if nothing else, these posts can serve as time capsules that I or others can read again one day and hopefully find comfort in.

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This week in the Parky blogosphere

One of my favourite podcasts is Packers Transplants by CheeseheadTV, which includes a segment called "This week in the Packers blogosphere".

The premise is that the hosts highlight features, articles or other forms of content they have enjoyed that week and share it with a wider audience.

I'm sure you can see where this is going…

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.

Who Stole My Dopamine?

Fab-yule-ous 🎄

Hello, you delightful lot! This is the final message until the New Year. Thank you for all your support and love & giggles in 2024. Love you…

Read more

a year ago · 11 likes · 8 comments · Emma Stubbs

Emma was one of the first writers on the subject I found after being diagnosed. She has a wonderful writing style - warm, engaging, honest and funny in equal measure. The link above is her reflective 2024 year-end post. She also has a pinned ‘Start here’ post, which I suppose would be a better starting point for new readers.

I should likely have already added her to my list of Substack recommendations, but will change that shortly.

(Substack won't let me embed this post, but here is a link to it.)

Esther has a good-sized following on Instagram, and recently shared my page with her followers which was very kind.

Even if she hadn't, I would recommend her account which Is full of videos like the one above that show the realities of the condition. This one has nearly 10 million views alone.

You only have to look at the average comments section to see how her posts resonate with her followers. The visual element is key, as several people with the condition report that the feeling of being ‘seen’ is such an important one.

This particular post strikes a chord with me. I spent over a year confused as to why I couldn't find a pair of shoes that were comfortable for both feet, with the right one a persistent problem.

Like several other minor niggles and complaints that had been building up, since June 4 they have all started to make sense.

(If you're in this position too, then go and buy the Hokas They've made a massive difference and helped to get me through more than 140,000 steps across seven days in Green Bay.)

Leave a comment

Reason to be optimistic this week

Parkinsonism & Related Disorders: Total physical activity, plant-based diet and neurodegenerative diseases: A prospective cohort study of the UK biobank

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.

Bluesky | Instagram | Threads

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.

Share Diary of a YOPD

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!

Subscribe now

Firstly, thanks for all the very kind responses to my last post. I set this newsletter up mostly for my own catharsis, and having more than 100 views on a single post is kind of mind-blowing to me. And hugely appreciated.

Update: the #PDcommunity on Bluesky continues to grow and build momentum. I’m on there as @iainliddle.com if you want to follow.

Onwards…

I’m quickly writing these thoughts from the departure gates at Heathrow.

In an hour or so, I fly to Chicago to board a bus headed for Green Bay, Wisconsin.

Me and ~70 other ubernerds are setting off on the annual UK & Irish Packers pilgrimage to see them host the San Francisco 49ers on Sunday and then the Miami Dolphins on Thanksgiving Thursday.

Both games are at the iconic Lambeau Field. It’s a dream trip. It should be a glorious week. It will be fucking cold.

I was diagnosed with YOPD on June 4 of this year. A few days later, an email came through saying that a few more spaces on the trip were available.

I’ve written before about the renewed urge to do the things I want to do, but also not approach everything with the associated pressure of “this might be the last or only time you get to do this!”

When this email landed, I half-jokingly said to my partner: “Maybe this year I should actually go.”

“Yes, you should,” she replied matter-of-factly.

It’s amazing how quickly you can go from never thinking about something at all to suddenly seeing it everywhere.

It was revealed in September that former Packers quarterback Brett Favre also has Parkinson’s.

A few days later, current quarterback Jordan Love arrived at Lambeau wearing Favre’s former number four jersey in support.

Now, Favre has been accused of questionable actions over recent years, and based on his social media posts, I’m pretty far apart from him politically.

But health is a leveller. Parkinson’s is a leveller.

When you hear someone has it, you think of the human and the implications rather than defaulting to thinking whether they are your type of person or not.

My trip to Wisconsin is not about my diagnosis, but it is because of it.

I can’t imagine I would have “actually gone” this year if not for it.

So that’s at least one good thing to come of it. A new adventure, new experiences, new friends.

When I’m watching Jordan Love play this week, I won’t be thinking about my condition. I’ll be indulging in and celebrating a passion that began nearly twenty years ago, long before YOPD was something I had heard of.

At other times, I’ll probably - as I almost constantly do anyway - think about it a lot and how it’s kind of the reason I am there at all.

So, err.. thank you dopamine deficiency? I guess?

And with that, it’s time to board.

Go Pack Go!

I’ll be posting updates from my week in Wisconsin on Instagram, Bluesky and maybe Threads if you’re curious as to what it all looks and sounds like.

Reason to be optimistic this week

Brain Molecule Ophthalmic Acid Reverses Parkinson’s Movement Deficits, UC Irvine Study Finds

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.

Share Diary of a YOPD

Help this newsletter reach more people by subscribing, sharing, and forwarding it to others. If you have a Substack account, then likes, comments, and restacks help, too!

Subscribe now

It has been a few weeks since I've posted on here, and the longer I leave it the more I feel undue pressure to make my next update good.

So, to ease that burden, here are a collection of a few unconnected thoughts that I've been having lately. (I also have four separate posts currently in drafts, so expect more regular updates to follow.)

Plus, I'm excited! Certainly more excited than I was last week.

You may have seen the news about an app called Bluesky which has seen a surge in new users signing up to it over the past week.

This is thought to be the result of disgruntled former Twitter/X users seeking new pastures in response to activity on the platform around the US election, which owner Elon Musk sought to influence so heavily.

Full disclosure: I uninstalled the X app several months ago, although I have not deleted my account. I also used to work at Twitter from 2015 to 2017.

The point of this post is not to debate the morals of continuing to use X, but more to showcase my early optimism about what is being built out of its rubble elsewhere.

Bluesky's slogan includes the phrase: “Find your community among millions of users, unleash your creativity, and have some fun again.”

It's almost word-for-word what my objectives were when starting this newsletter.

In the deluge of emigrants from X, a number of them are members of the Parkinson's community, simply looking for a kinder setting to find and connect with each other.

Yesterday, I sent out the following post, and I've been so pleased with the response to it.

In less than 24 hours, I've found I've connected with more than 40 new people from the PD community on a platform which I’d rarely considered previously.

Among that number are people with the condition, as well as academics and researchers who can share interesting new updates in an arena which just generally feels grown up despite being newer than most.

Today, Parkinson's Europe sent out its first post on Bluesky and there seems a wider appetite for greater connection and shared experiences.

Like any social media platform, you can't predict what it will turn into, and many of them end up changing their mission. But at least for now, there feels a growing momentum behind the Parkinson's community on Bluesky.

I'm going to email Parkinson's UK and my hospital's neurology unit to suggest they open an account, and have also undertaken the manual task of curating a list of opted-in people from the PD community who want to be more easily discoverable. Sometimes you have to help build the things you want to use.

I've said previously that Substack reminds me of the Blogger and WordPress scenes from 15 or so years ago.

Bluesky also feels like those early days of social media, and the two platforms may prove to be a nice complement to each other in that way.

The follower numbers are smaller, the reach is less, but it all feels very deliberate and intentional in a way that many platforms don't.

People aren't sitting on the tube doom-scrolling through Substack newsletters. They receive them because presumably they have a genuine interest in reading them.

Neither platform offers a smooth onboarding process. It is all quite manual, but therefore the results feel more meaningful.

It all feels quite the opposite of Threads, which may well be putting on a million users per day, but it still feels like a place waiting to happen.

Bluesky, at least in the small world of the online Parkinson's community, feels like it is happening now.

And while posts on research and other information and advice will be very welcome, the thing I am more excited about is the prospect of being part of a community which shares regular non-PD updates.

A live feed of new ideas, accomplishments, and plans being made might be be the regular reminder many of us need that, although more difficult than it once was, life goes on and you can live well.

Follow me on Bluesky

The search for a unifying hashtag

Another thing which becomes apparent when you float around various online PD forums is that there is no common hashtag which people can rally behind and use for discovery.

#Parkinsons feels too blunt.

#ParkinsonsDisease is even worse.

#YOPD is niche and vague.

In a professional capacity, I would advise a client to make their hashtag a call to action. Something active which can be used in the context of a sentence.

Therefore the above reply from Carla on Bluesky seems the best option.

Let's try and make it a thing.

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Recommendations on Substack really work

A quick observation that recommending a fellow newsletter writer on here seems to have a direct impact on their subscribers.

Almost too well.

I have less than 30 email subscribers, but the conversion rate from being shown recommended newsletters when you subscribe to another is very high.

Clearly some of these are accidental subscriptions. I don't think nine of my subscribers were really seeking the in-depth NFL feature writing at Go Long.

With apologies to the great Tyler Dunne, I've taken him out of my recommendations to avoid confusion, but left health tech reporter and fellow parky Rory Cellan-Jones in there.

Leave me a message in the comments below if you're interested in a mutual recommendations exchange.

When email marketing goes wrong

A fun one to finish.

I was recently exploring the options on my Gympass (which I have access to as a work benefit) and narrowed my choices by clicking on a few different areas of interest.

This process triggered the following email to be sent out.

I think this speaks for itself.

I saw the funny side rather than taking offence, but it's easy to see how this might be upsetting for someone to receive.

It is staggering that as we approach 2025, some major companies are still deploying such heavy-handed examples of automated marketing.

Reason to be optimistic this week

AI protein-prediction tool AlphaFold3 is now open source

If you made it this far, thank you for reading!

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.

Share Diary of a YOPD

There is one aspect of the story of my diagnosis that regularly surprises people when I relay it.

I was taken aback, too.

The same private healthcare plan which had fortuitously enabled me to get such speedy testing - a head and shoulders MRI followed by a DaT scan - was equally quick to tell me that it would not cover any further treatment to do with Parkinson's now that it had been confirmed.

“Your policy doesn't cover ‘chronic’ conditions,” I was told at the time, and after I'd questioned it, it was reaffirmed.

There's little point arguing or debating the merits of this, although I am inclined to agree with one friend who pointed out: “Surely a healthcare plan is useless if it doesn't cover you at a time when you most need it."

As has been pointed out by the excellent Movers & Shakers campaigning group, there is no clear on-boarding ramp once you're given the diagnosis of Parkinson's.

Their ‘Parky Charter’ is an effective 5-point summary of the key things patients need from the government but do not get (please sign the charter). Point two reads:

That first call to your local GP surgery is a vulnerable one.

“Hi, errm, I've been told I have an incurable degenerative neurological condition, and I'm hoping you can help?”

Some basic research conducted ahead of making this call had revealed some unwanted information about the state of neurology services in the UK.

“According to the Association of British Neurologists, the UK ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition. Adjusted for the population, France and Germany have over seven neurologists for every two that the UK has.” (Link)

I also know from talking to others who are newly diagnosed that not everybody has a supportive experience.

A meet-and-greet Zoom call shocked me by some of the tales I heard.

One person had still yet to be seen by a specialist consultant a year on since their initial diagnosis.

Another said they had been given the news some barely explained pills and sent on their way with a message of "see you in 18 months".

Others had lengthy waits to even be tested for the condition.

I felt almost embarrassed by how smooth the process had been for me and how supportive everyone in the NHS I've encountered since has been.

I must be one of the lucky ones because I've been genuinely blown away at the level of care and expertise I've received so far.

It's just over four months since I was diagnosed and in that time I've seen a consultant, an occupational therapist and a physio.

On Friday, I also saw a specialist Parkinson's nurse. In every encounter, I have felt fully informed, listened to and treated as an individual.

Pleasingly, on the latest visit, I was able to offer a bit of help in return as well by making them aware of some recent accessibility advancements.

So, I'm sharing those updates here as well in case others can benefit from it.

AI-powered dictation software

Since restricted movement and slowness in my right arm are my main symptoms, typing has been an issue.

For someone who has been able to touch-type for more than 20 years, the loss of this ability is infuriating.

My left hand is still game, but the right simply refuses to keep up.

This has led me to dictation as a workaround, but anyone who uses a Macbook (as I do personally and professionally) may know that the native capabilities leave a lot to be desired.

I was spending as much time correcting and grammatically tidying up the sentences as it would have taken me to slowly type them out slowly in the first place.

In my job as a digital consultant, I have written a lot in the last two years about the advancement and implications of generative artificial intelligence.

OpenAI, the company behind ChatGPT, has also trained an English speech recognition model and made it open source, so other developers can build it into their applications.

Below are details of two dictation apps which I have found to be genuinely helpful and almost transformative in helping me get back up to speed at work.

Aiko

A free tool which runs on iOS devices and Macs. I use the app on my iPhone regularly and find it to be very efficient, although eventually had to delete it from my laptop because it made the machine run too slowly during transcription.

You can also export the transcribed text into a number of different useful file types.

Aiko also lets you import audio or video files from your phone and will transcribe those quickly.

I use this primarily for stream-of-consciousness brainstorming or note-taking while on the move.

Although the use case of copying the transcribed text and sending it to myself via WhatsApp so that I could edit it on my laptop was a little cumbersome, until I found…

Wispr Flow

I only became aware of this earlier in the week via The AI Valley’s newsletter, but it appears to be the desktop solution I was hoping for.

Disclaimer: This is not free after the 14-day trial expires, But I have found it remarkably accurate so far, even when dealing with tricky technical terms that often come up in my work.

There is also the option to add custom words to the dictionary. No more manually changing Ian to Iain at the end of every email!

I have used it to write this entire newsletter update with minimal need to go back and change things.

Ironically, I did have to edit that last sentence, which initially read "Joe Bash and change things".

Hopefully one or both tools will prove equally useful to readers of this newsletter and be shared with other Parkinson's patients at the hospital.

Artificial intelligence may one day power the breakthrough necessary to finally cure Parkinson's and other diseases like it. But until that day comes, this is one example of how the rapidly evolving technology will help to make general life more tolerable and efficient for those who have specific medical needs.

I am not saying that is a fair trade-off for the bulldozer it will also drive over the arts and creative industries, but it is something.

One other thing…

Andrew Huberman is a medical professor who has gained a large following over recent years thanks to his regular appearances on popular podcasts such as Joe Rogan’s and Lex Fridman’s.

I believe most of his work and research focuses on the brain.

All Parkinson's patients know that exercise is an important factor in managing symptoms, but I found his takeaway below that cardiovascular exercise is more effective than resistance training when it comes to cognitive enhancement to be interesting.

Clearly, regular strength training, ballistic movement, stretching and flexibility also all have a part to play.

However, this simple formula is relevant to anyone: Elevated heart rate = enhanced brain function.

The knock-on effect of that is that, once told, those people then have to react.

In the nearly four months since being presented with the unwanted results of the DaT scan, I have received broadly four types of reaction.

These are presented below in a ‘power rankings’ format.

4. No response

The least common, admittedly, but a few. These were unique to group chats or email chains with multiple recipients where there is a diffusion of responsibility to reply.

Given you are only telling people who you think would be interested in knowing or need to know for whatever reason, I was quite surprised that anyone was in this category, but you remember who they are.

Don’t do this.

3. Sorry to hear this.

A warm, perfectly acceptable and appreciated response, with only faint echoes of an auto-generated Gmail reply in some cases.

I was grateful to everyone who took the time to send one of these messages. Don’t underestimate the impact of a simple act of kindness.

2. Let me know if there is anything I can do to help.

I think this is the type of response I would generally default to if the scenarios were reversed and I was told of someone’s ill fortune: an illness, a bereavement, a break-up etc.

There would be a genuine willingness to assist. To lighten the load for that person. However, equally, you're unsure of what they need and how to help rather than get in the way.

Does this person want to be left alone? Do I risk further suffocating them at a difficult time? Do they want tangible support now more than ever? Just let me know!

It is a kind, welcome sentiment. I truly appreciated all of them. However, I have learned there is a preferable way to phrase that offer…

1. What can I do to help?

A subtle but impactful twist on the above.

An active request. I want to help - tell me how I can be helpful.

Although 3 and 4 could be interpreted interchangeably, I felt a difference when presented with a variation of the latter.

It is direct. It is specific. Can I do (X) for you? Do you need help with (Y)? Would (Z) make things easier for you?

Inevitably, people in difficult circumstances will need support, but may also feel reluctant to impose by asking for it. Especially once the initial ‘glow’ (for want of a better word) has worn off and what was once news is now an accepted reality.

I can't truly imagine messaging someone out of the blue and asking:

“Remember three months ago when you asked if there was anything you could do to help, well, I actually do need childcare for my next hospital visit. So shall I put you down for a school pick-up at 3:15 next Tuesday?

The more specific the offer of support, the more I felt supported. Real examples included:

• “Let's get out for a run on Saturday”

• “My partner works in HR, do you need her to look into anything for you?

• “I know someone who has lived with it for 25 years and said they will be happy to speak to you. Would you like me to put you in touch?

I nearly shed a tear in the office one day after reading message after message from a former housemate listing suggestions of ways they wanted to help, with an underlying tone of urgency and intent.

Arguably, I am late in reaching this conclusion, but the last few months have shown me to be clear and direct with my own offers of support to others in future.

It's better to risk being overbearing if it increases the chances of the recipient accepting the help they would like.

Whereas, well-intentioned as I'm sure they always are, the chances of an undefined offer turning into something useful start off smaller and decrease as time passes.

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What I have also learned, more recently, is that there is a fifth way to respond.

0. Just do something

The highest bar to clear, but I am fortunate to know several people who didn't wait to be asked. They just did things to help.

I want to share one such example here.

In less than two months, the above WhatsApp message turned into the below.

At the time of writing, more than £2,600 has been raised by this one run alone and those funds will make a genuine difference to the small charity it was in aid of - Spotlight YOPD.

It is an amazing effort, an amazing gesture. One which has humbled me slightly.

I will reiterate that I am lucky to have a broad support network: partner, family, friends, colleagues and other well-wishers.

I also live in the South-East of England where there is more third-party support and resources available closer to home.

Clearly, not everyone who receives difficult news is in as privileged a position.

Part of my aim for starting this blog/newsletter is to connect with others experiencing the same thing and create a digital support network where people with YOPD can listen to and help each other.

You can't have too many places to do that, I figure.

Regardless of who is in need and why, I now know that the best way to support them is to ask precisely what I can do. And ask more than once.

Or, maybe, I'll just do something.

Last year I was interviewed for a work profile piece on the company website.

I said how much I would like to attend T20 Finals Day. A, fairly modest ambition. There had been 21 of these to date at the time of writing. All a short train ride from London.

It was one of many “I’d really like to do that one day” things in my head with no immediate urgency or date in mind. One day, though!

On Saturday, I Did A Thing I Wanted To Do.

It shouldn’t take a medical diagnosis of a potentially-problematic future to inspire action, but it also undoubtedly does.

Early in the day, a person with more advanced Parkinson’s spoke on the field on behalf of the Cricketers’ Trust, which added a small extra slice of poignancy to the occasion.

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He said:

“There have been some dark days, and there will be some more dark days ahead. But I’m looking forward to today.”

If you like cricket then Finals Day is one of the highlights of the sporting calendar. Edgbaston puts on a genuinely great occasion of fun and entertainment.

I was sat in front of eventual champions Gloucestershire’s dressing room. The team whose dominant one-day side of the late 90s helped to hook me as a fan of county cricket. Then captain, Mark Alleyne, is now their coach.

There is no great awakening to this tale of Person Goes To Thing. Nor does every decision have framed around: “But what if my brain breaks one day?!”

Similarly, every occasion can’t be some emotional ‘farewell tour’ in fear of something that might never happen.

Yet there is an itch-scratching simple pleasure to committing to tick off simple goals, if you can, rather than pencilling them in for a non-existent future date. When the kids are older… When we’re retired… Not this year, but one day!

Do the things you want to do.

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