I know I said I was done with Who Stole My Dopamine?.

I said it with the kind of certainty usually reserved for “I’ll never drink again” and “I’m definitely not buying another pair of shoes.”

But here we are.

Because apparently hell is a place I can’t stay away from, and the truth is I miss writing to you.

So here’s the deal:

I’ve moved my writing to a new home — Art & Other Emergencies — where I’m still doing the thing I always did, just with more paint and fewer medical updates. It’s a space for paintings, studio notes, and the kind of ranting that doesn’t require a diagnosis.

What you’ll find there:

• new paintings posted as they’re made

• weekly round-ups

• a weekly letter (part rant, part noticing, part sharing cool stuff)

• the occasional weather complaint because yes, it’s still unresolved

This letter isn’t being updated anymore, but if you’ve been here for the writing, the honesty, the weird little shared moments… you might like this.

If you want to keep reading…

You can join the new one here:

No pressure. No guilt. Just paint, words, and the same stubborn human being behind the keyboard.

And if you’re wondering if I’ll ever stop writing…

Let’s be real. Not in this lifetime.

With love

E xxx

I started Who Stole My Dopamine back in 20211 with the naive thought that maybe, just maybe, sharing my misadventures with Parkinson’s, parenting, and the general absurdity of being alive might help.2 Help me, help you, help anyone who stumbled in here by accident looking for actual medical advice (sorry about that).

And what a ride it’s been.

You’ve let me rant about the price of bananas, share the intimate horrors of sports bras, and moan about the weather in Scotland (17ºC and grey). You’ve read along as I tied myself in knots literally, with jumpers stuck over my head and you’ve cheered me on when I tried to make dignity and Parkinson’s hold hands, however briefly.

But most importantly: you’ve written back. My inbox has been full of your stories — funny, filthy, touching, heartbreaking, and occasionally so bizarre I’ve had to check whether it was me or you who was off their meds. You’ve been generous, you’ve been kind, and you’ve made me laugh harder than I thought possible while discussing drool, tremors, and collapsing into laundry baskets.

That community? That solidarity? That’s the good stuff. That’s dopamine.

But here’s the truth: my energy now has to go elsewhere. Parkinson’s is greedy. It wants all of me. And I want to save a little bit for my art, so I can spend the next years creating something daft and beautiful — ideally with one hand on a paintbrush and the other reaching for a glass of wine. (The wine rack, by the way, remains a non-negotiable medical necessity.)

There’s also my daughter off to college, living her own life, no longer stuck with the worry of a declining parent front and centre. And I want to offer you the same freedom. You don’t need to keep slogging through my typo-ridden, wine-splattered newsletters. You’re free. Go! Be unburdened! Wear whatever bloody socks you like!

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.

I’ll still be out there, just in a different form. Covered in paint, muttering at canvases, possibly still swearing about tights. If you see a woman in the corner of an art fair who looks like she’s lost a fight with her own shoes… come say hello.

With love, with gratitude, and with one final fuck you to Parkinson’s

Emma xxx

P.S. My art lives over at EmmaStubbs.uk if you want to say hi.

I was writing Tumbled (it was my serialised memoir1) for what feels like eons. It started as the story of moving home after 25 years away — two kids, one great love, one freezing house, a lot of chaos, and a very long to-do list.

Somewhere in the middle of all that bloody Parkinson’s popped in.

And PD got in the way.

But now, Tumbled is complete, ok not at all BUT it’s finally an ebook. It’s chaotic, funny, sweary, and very, very real… and I’ve added two brand new chapters to bring you right up to date:

• The moment everything changed.

• Where I am now, and where I’m headed next.

This ebook is my way of saying thank you.
If you become a paid subscriber, it’s yours 💞

Why Go Paid?

Because this is more than a newsletter — it’s an ongoing story.

Every month, I send out my diary: tiny snapshots of life in all its ridiculous, painful, joyful mess. Some of it looks like this:

Thursday – 2:22pm
One entire day of sunshine in Aberdeen. Drank overpriced rosé in the park, ate crisps straight from the bag like feral children. My body opened like a flower. For one glorious evening, I forgot I had Parkinson’s.

Wednesday – 5:47pm
My foot curled today in a way that felt medieval. I stared at the bruise for ages. Like a continent on some other map where pain lives rent-free.

Sunday – 5:05pm
Sat on a park bench watching a man juggle badly and laugh every time he dropped something. It felt… metaphorical.

The diaries are for my subscribers. They’re the real-time chapters. The bits that don’t make it anywhere else.

How to Get the Ebook

• Upgrade to paid.

• Get your Tumbled ebook instantly.

• Read the story all in one place!

• Stay for the diaries - chaos, love, wine, bruises, pigeons called Jeremiah and all.

• All the normal newsletters as well :)

Thursday – 2:22pm – One Whole Day of Summer

One day. One entire, real-life, actual day of sunshine in the North of Scotland. We celebrated like people recently released from a bunker. Drank offensively overpriced rosé in the park. Ate crisps straight from the bag like animals. Didn’t get sunburnt — small miracles.1

My body, bless it, responded to the heat like a flower under a grow lamp. Less rigidity, fewer spasms, and for one glorious evening, I forgot I had a disease named after a dead Victorian man.

Friday – 11:11am – The List That Ate My Sanity

Two shared art exhibitions. One brain. Zero capacity for admin. Cue the spreadsheets, the tape measures, the low-grade panic that I’d label something with the wrong title and spend eternity being asked what "Untitled No.7" actually meant.

I’m proud of what we made. I’m just too bloody knackered to feel it.

Shiprow Exhibition | Kooperator.Space Exhibition

Sunday – 3:30pm – All the Ships, All the People

The Tall Ships are in town and suddenly Aberdeen looks... sparkly? The harbour has never felt so alive. The exhibitions are running at full tilt. Tourists everywhere. Questions, compliments, awkward silences. (The usual art gallery cocktail.)

There is a deep, strange joy in seeing the city through new eyes. Through their eyes. It looks bigger. Brighter. Full of potential.

The Exhibition, Day Whatever

Someone cried in front of one of the art works. Good tears. They said it "spoke" to them. I said thank you and then ran to the back room to pretend I wasn’t also crying.

Parkinson's is isolating. But art...art lets me stay in the conversation.

Monday – 9:05am – Introvert Overload

Talked to more people in 48 hours than I did in the entirety of last year. I'm all smiled out. My cheeks hurt. My brain has shut the gates and put up a "Gone Fishing" sign. The art is holding up better than I am.

Wednesday – 5:47pm – Dystonia, The Bitch

My foot curled today in a way that felt medieval. The muscles in my thigh cramp so hard they leave bruises. Not from falling. Not from bumping. Just the act of being clenched into submission over and over until the blood vessels wave the white flag.

I stared at the mark for ages. The shape of it. Like a continent in some other hemisphere where pain lives rent-free.

Friday – 1:18pm – Jeremiah Returns

The pigeon has returned. Jeremiah, self-appointed overlord of the window sill, made another bid for entry into the living room. Wings like drama. Beady eyes full of intent. I'm beginning to think he wants to co-curate the exhibition.

Sunday – 10:10am – The Finch Family Chronicles

There is a family of finches at the window feeder. They bicker and flap and generally act like tiny winged soap opera stars. I love them. They are the only reality TV I willingly consume.

They scatter the seeds all over the window box which Jeremiah hoovers up - he’s decidedly too fat to manage to get to the feeder.

Monday – 4:30pm – Packing For A Life

The youngest is gearing up for Glasgow. The lists are long and mostly about bedding. I keep forgetting things and she keeps pretending not to notice.

I’m thrilled for her. Bursting, actually. But also quietly panicking about money. Because making a living as an artist with Parkinson's feels like trying to build IKEA furniture with cooked spaghetti.

Tuesday – 12:12pm – Not That Kind of Parkinson’s

I haven’t engaged with the online Parkinson’s community much lately. Too much doomscrolling. Too many "have you tried..." comments. Not enough space for the in-between.

I’m not in denial. I’m just choosing not to drown in it.

Wednesday – 6:00pm – Paint, Pain, Repeat

Made something new today. Something jagged and weird and true. My foot spasmed halfway through and I had to sit on the floor for twenty minutes pretending I meant to be there.

Still finished it though. Paint wins.

Friday – 3:45pm – Rage

Sometimes I get so angry I could boil water with my thoughts. Today the trigger is the benefits system that asks folks like us to prove “how disabled” we are.

Saturday – 8:30pm – Little Joys

All my business cards were taken from the exhibition. That’s a lot of folks taking a wee bit of me home to enjoy and hopefully follow my work online.

Sunday – 5:05pm – Park Bench Philosophy

Sat in the park watching someone juggle. They dropped every third item and just laughed. Picked it back up. Kept going.

It felt... metaphorical.

Monday – 7:19pm – What If It Never Gets Easier?

I don’t want a cure today. I want a cushion. Some relief. A space where I can say, "this is hard" and not be told I’m brave.

I’m not brave. I’m bruised.

Wednesday – 2:30pm – Jeremiah 2: The Reckoning

Jeremiah has brought a friend. They pecked the glass like they were trying to Morse code their manifesto. I have concerns.

Thursday – 6:11pm – Body Math

If one exhibition = 5 spoons
and one cup of coffee = 1 spoon
but cooking dinner = 3 spoons
and I only had 6 spoons today...

Dinner might be toast.

Friday – 1:00pm – This Is Not Nothing

Parkinson's has taken so much. But it hasn’t taken this: the birds, the brushes, the ridiculous pigeons, the daughter who still asks me to help pick out duvet covers.

Still here. Still tired.

But not done.

Sunday – 9:10am – Just This

July: one part art, two parts pain, a dash of dread, and a stubborn aftertaste of joy.

Here’s to bruises, birds, and beautiful things blooming in broken places.

with love
E xxx

Tuesday – 3:03am – The Political Situation, Revisited

Woke up gasping from another bloody erotic dream.
Not Jason Momoa. Not Pedro Pascal. No.
Michael. Fucking. Hestletine1.

I mean, what even is that? Have I run out of viable fantasy men? Am I now being handed the political leftovers because dopamine’s on strike?

He was very polite in the dream. Took his shoes off at the door. Called me “madam”. Made tea before the... Still. No.

Thursday – Morning

The judgy dog has decided I’m not walking well enough to deserve affection. She’s taken to sighing at me. Actually sighing. Loudly. While lying just out of reach like some furry Greek chorus of disapproval.

Made coffee. Spilled half of it. Made a new cup. Left the milk in the cupboard and the sugar in the fridge.

At this point I’m just grateful I didn’t end up drinking shampoo again.

Saturday – 5pm – The Invisible Olympics

Youngest had a meltdown over the wrong jumper. I tried to help but my brain had left the chat. Couldn’t find the words. Just sat there, blinking, as she raged and cried.

I finally got out: “I’m sorry, love. My brain's gone spaghetti again.”

She softened. Came and sat next to me. Said, “I know, Mum. I just hate that it’s like this.”

Same, babe. Same.

I'm competing in an invisible Olympics every day – slalom between symptoms, marathon of fatigue, synchronised falling. No medals, though.

Monday – The Cat is Back

Imaginary cat has returned. Today she’s orange, smug and called Maureen. She follows me around and judges my outfit choices. I think she and the dog are in cahoots.

I asked Maureen if I should go to the art opening I was invited to. She knocked a mental glass off a shelf in my mind palace.

Fair. I think I’ll rest instead.2

Wednesday – 4pm

Something weird happened today.
I was walking (read: lurching) around in the studio when one of the other artists offered to help me. I declined. Then I accepted. Then I hated myself for needing help. Then I thanked her so profusely I probably traumatised her.

The rest of the day I felt... off.
Like I'd overdosed on someone else's goodness and now I was crashing.
The independence I used to have, the fire and swagger, have been chipped away. And sometimes, even when people are lovely, I grieve what I’ve lost so much it makes me feel like a cracked vase pretending to hold water.

Later the eldest texted me: “Proud of you for getting to the studio”

Yeah. I'm still here, kid. Even if I'm glue and willpower some days.

Friday – 11:47am

Made toast. Dropped toast.
Dog tried to eat toast. Dropped self trying to beat dog to toast.

Now we’re both sitting in shame, me with a bruised bum and her with crumbs in her beard, pretending nothing happened.

Sunday – Screaming Into the Laundry

Sometimes it just builds.
The rage, the grief, the exhausted fury of having a disease that makes your brain eat itself backwards. I tried folding towels but ended up crying into a hoodie while the dog licked my foot like she was trying to perform an exorcism.

Middle of the day. Sun shining. And I’m crumpled in a pile of laundry asking the universe why it picked me.

But then the youngest walked in. Sat next to me. Said, “Shall I do the rest of it, Mum?”

And that’s the thing, isn't it?

Parkinson’s has stolen a lot. But it hasn’t stolen them. My girls are fierce, flawed, funny and somehow still willing to sit with me in the dark until the light comes back.

Tuesday – Pre-Wine

The real battle of the day wasn’t existential dread or existential diarrhoea (don’t ask). It was brushing my hair.

My arm wouldn’t lift properly. My fingers wouldn’t grip. I tried using a round brush and almost garrotted myself. Eventually did it with a fork. Am now halfway to a Little Mermaid cosplay but at least I’m no longer feral.

Small wins.

Thursday – 9am – Dopamine Desert

Woke up feeling flatter than a pancake under a bus. No dopamine, no juice, no spark. Just meh.

Tried dancing to music. Dog left the room. Maureen rolled her imaginary eyes.

Sometimes the best I can do is not lie face-down on the carpet all day. So I sat up, drank some water, and pretended I wasn’t thinking about chocolate digestives every three seconds.

Saturday – Noon – When the Pain Hits

The pain today is like a drunk gremlin with a grudge, punching its way around my joints.

I googled to see if it could be anything else. Even the search results were smirking like I was a moron. I am a moron. I just want a different answer.

I want something fixable.

Monday – 10:30am – Workshop Wonders

People keep asking if I run workshops. Bless. It’s flattering.

But also terrifying. Do I let 12 strangers see me shake and stall and forget words mid-sentence? Do I tell them I may need a lie-down halfway through?

Then again, I know what it feels like to be left out. So maybe yes. But we do it my way: with cushions, tea, and absolutely no icebreakers.

Wednesday – 6:12pm – Maths, Parkinson’s Edition

If one shower = 3 units of energy
and cooking dinner = 4 units
but brushing teeth = 2 units

And I only have 5 units for the day...

That’s right. Dry shampoo for the win. Takeaway. Mouthwash. Parkinson’s Maths.

Thursday – 1am – Fear and Furniture

Fell again. Not bad. Just enough to scare the dog and bruise my ego. Landed against the sofa like it owed me money.

Afterwards I lay on the floor and wondered what the hell happens in ten years. Twenty. What kind of mother will I be when I can't get off the floor?

Then the cat (Maureen) lay on my chest. And I remembered: I’m still here.

Friday – Morning

Youngest said the thing again: “But you don’t look like you have Parkinson’s.”

It hurts, even when I know it comes from fear. Her Google search turned up the usual: old men, hunched backs, slow walkers.

We sat down. I showed her videos of younger women, creatives, dancers with PD. We talked. We cried. She said, “Maybe you should be one of those people who changes what people think Parkinson’s looks like.”

Maybe I already am.

Sunday

Today I just breathed. Slowly. On purpose.

No striving. No proving. No performing.

Just breath and birdsong and the occasional whine from the neurotic collie.

This too is resistance.

Monday – Afternoon – My Girls

They’re 17 and 21. And they are, without doubt, the greatest joy I’ve ever known.

They fight like banshees and text me funny memes and help me reach things and tell me when I’m being weird. They remember the things I can’t. They pretend they didn’t notice I put my clothes on backwards. They are young women shaped by love, rage, and an involuntary education in neurology.

This is not the life I wanted for them.

Tuesday – 9:45am – Still Here

That’s the thing, isn’t it?

You fall. You cry. You shake. You joke. You rage. You ache. You love.

You write it all down. You get up again. You go to sleep hoping for dreams without politicians.

Still here.

With love,

Exx

P.S. You know the drill: I am pathetically grateful for sharing, commenting and/or wine.

As you know I have been building my art business ever since I had the amazing opportunity to use a studio space. I have just held my first solo exhibition and it has been a great success. So essentially up yours Parkinson’s!!

This has, of course, come at a cost…always with the negative waves, Parky. But you understand exhaustion and PD are a special hell.

As a result I have decided to take a slightly different approach with this newsletter. Rather than put myself under pressure every week or so to create a work of genius (ahem) I am going to make something entirely different!

“Well, come on, Emma - don’t leave us in suspense!”

<drumroll>

I’m releasing a Who Stole My Dopamine monthly diary!

Every day or so I shall commit my Parkinson’s thoughts to paper and present it to you as fait accompli last Thursday of the month.

That means you will get only one letter from me per month but it will be much longer and fuller and possibly madder.

Let’s get real, it means less clutter in your emails, a more accurate view of how Parkinson’s changes day to day and less stress for me.

I hope you will be happy with this shift. Just to convince you here is a sample of how it will go:

3am - Last Tuesday

Nightmares wake me. Stagger to loo, bash elbow, urg.

And then I remember the contents of my nightmares. Oh god, no! No, nononononoonoooooooooo!

Erotic dreams are one thing.

Erotic dreams about Keir Starmer1. NO

I mean it poses so many questions - not least the state of my brain. But seriously is there on iota of erotic-sexiness to that man? Maybe he’s good with his….nope! Do not even imagine.

Wednesday post-coffee/pre-wine

So the coffee is wearing off and the apathy is in full swing. Great, only I have an exhibition to hang and curate. And frankly, or apathetically, I don’t give a shit.

This (and the pain) is one of the worst symptoms of this disease for me. It’s a grey no-mans land of ashes in the mouth and emptiness in the heart. For someone who creates and attempts to make people laugh it’s weird. I can’t really feel much of that myself…just don’t get the ol’ dopamine rewards.

Oh well keep trying, Emma, keep trying.

Wednesday post-wine

Well bugger me I did it! Actually managed to curate, hang and entertain an opening of my very own exhibition. Still not feeling much in the reward boost but everyone was incredibly nice and supportive. I do like that it frees me up to create new works and new directions. The creativity bit still functions thank goodness! In fact it might be in overdrive…or is that the wine consumption? Who can tell?

Sunday all day

Absolutely buggered.

Monday

Blimey June is moving too fast for me. Parkinson’s likes it slow. But now the rush of the exhibition is over I feel I can calm it down a little. Only life just isn’t that forgiving is it?

Lots of people asking if I run workshops. I wonder if I can manage something so intense. I could imagine Parkinson’s delighting in throwing a spanner in the works with that one. But no crazy random symptoms - no gain, right?

(Any one with any experience doing something like this drop me a line with survival suggestions.)

Wednesday afternoon before wine

Closing day of the exhibition and it’s been wild. Sales and lots of people popping and just lovely. I’m very touched.

But also am feeling relief that I can go back to normal and hide in my corner of the studio and simply beat the shakes into submission and paint.

Wednesday - wine time

Only…

I have been given an extension as the studio manager wants something up on the walls until the next artists arrive.

Well I did want maximum exposure…

Careful what you wish for!!

Cheers!

Alright my darlings, I hope you will enjoy the proposed new format! As ever leave a comment and let me know your thoughts.

with love

E xx

When I first heard Morten Harket had been diagnosed with Parkinson’s, I made a small, involuntary sound somewhere between a gasp and a swear word. It’s always jarring when someone you never expected to share your particular flavour of neurological absurdity suddenly joins the party. Especially someone you spent your entire preadolescence in an imaginary relationship with.

Because you see, dear reader, I didn’t grow up in an ordinary childhood setting. I grew up as the housekeeper’s daughter on an English manor estate where the roses were overblown and the peaches clung to south-facing walls like starlets in repose. The gardens were vast and secretive, stuffed with ancient yew hedges that whispered secrets and probably (definitely) housed ghosts. My companions were horses, dogs, and the voice of Morten Harket soaring out of a battered cassette player as I galloped around the place like a feral child out of a Merchant Ivory film.

At the tender age of eight, A-ha’s Take On Me wasn’t just a song—it was a lifeline. It was pure magic: longing, energy, escape, and that otherworldly falsetto that made my ribs buzz like a tuning fork. I didn’t know then what a synthesiser was, or that Norway had cool pop stars(I’m not sure they have since haha), or that grown men could sound like dreams but I knew I wanted whatever that was.

Fast-forward to now. Morten Harket - ethereal songbird, famously private, beautiful even in pixelated YouTube interviews has shared that he has Parkinson’s. My first thought was no. My second thought was yes, of course. Not because he deserves it (God no!) but because Parkinson’s is indiscriminate. It doesn’t care if you’re a global icon, or an artist quietly pottering away in a wind-battered Scottish kitchen.

And here’s the thing that stings and soothes in equal measure: when someone like Harket says the word out loud, it shifts things. Parkinson’s gets so easily shoved into this dusty box labelled “old men shuffling about”. Which, let me be clear, is also a valid and dignified existence—but it flattens the reality for many of us. The reality is more nuanced. It includes dancers, painters, rock climbers, bakers, woodworkers. It includes people like me, whose body fizzes with rebellion but whose brain is still throwing creative parties most days of the week.

Because Parkinson’s, in my experience, hasn’t touched my creativity. If anything, it’s become a lifeline, a place where I still have some autonomy. I might drop the paintbrush more often or spend longer unscrewing a pen lid than actually writing, but the ideas still come. I’m still driven by colour, story, and the joy of making something—anything—that wasn’t there before.

The physical side, though? Yeah, it’s a bastard. There are days when my hands feel like they’ve been outsourced to a toddler with an espresso addiction. But when I hear someone like Morten speak publicly, I’m reminded that this condition doesn’t erase who you are. If anything, it forces you to double down on the most essential parts. It makes you trim the fat of performance and dig straight into purpose.

There’s something especially poignant about a performer, a singer, developing a condition that attacks movement and vocal control. It’s a cruel irony. But also, I think, a kind of accidental spotlight. When a beloved artist reveals this diagnosis, it puts a very human face on something so often misrepresented. And when that face belongs to someone who was, let’s face it, most people's fantasy in 1985, it gives Parkinson’s a new kind of narrative.

I feel sorrow for Morten, of course. Parkinson’s is relentless and intimate and strange. But I also feel admiration. Because by speaking it aloud, he’s given permission to others. And in a world where everyone curates their life within an inch of its glossy limits, truth is a rare and radical thing.

He didn’t have to share it. Especially not someone as famously enigmatic as he is. But he did. And that matters.

So here’s to you, Morten Harket. For the soundtrack of my feral garden years. For showing that vulnerability doesn’t dull shine—it refracts it. For reminding the world that creativity doesn’t stop just because the body hiccups.

And to my fellow artists with rebellious nervous systems…may our hands shake but never our spirits.

with love

E xx

So, I’m painting again. Or rather, I’m wrestling the bastard who stole my dopamine back into the cupboard and slapping some paint on panels.

Let’s be absolutely clear: I’m not sticking bits of pottery onto canvas like some Pinterest craft project. I’m painting images of sea pottery fragments. Tiny, meticulous oil paintings that make people squint and go, “Oh, I thought that was an actual shard!” That’s the whole point: to give these broken pieces new life through paint.

Post-Parkinson’s diagnosis, every brushstroke is an adventure. My hand doesn’t always show up for work, which makes me feel like I’m holding a paintbrush attached to a pogo stick. But these paintings aren’t just about fighting the tremor. They’re about fighting the apathy that Parkinson’s kindly throws in as a bonus prize. The part of my brain that used to be a cheerleader is now more like a sulky teenager: “Why even bother?” But if I don’t, the disease wins. And I’m not ready to hand over my paintbox just yet.

It’s not just the physical and mental fatigue, though. It’s the creeping invisibility. The sort that comes not only from chronic illness, but from being an older woman (I’m 49). Let’s face it, society has always been a bit shit at seeing women as they age.

We’re the ones who hold it all together, often unnoticed, until we vanish behind the scenery. And Parkinson’s doesn’t help. It’s a disease that’s still largely misunderstood, especially in women, who are under-researched and misdiagnosed at alarming rates. So yeah, I’m painting fragments of crockery, but I’m also painting the bloody truth about how we’re so often left out of the frame.

These pottery fragments? They’re metaphors. They’re about survival. They’re about holding onto what’s precious, even when it’s cracked and worn by the tide. I see myself in them…still here, still functioning, even if I’m chipped and a bit sea-beaten. And painting them is my way of telling Parkinson’s to piss off for a minute, to let me focus on the beauty of what remains.

You know what helps? The shared studio. I used to be so driven I never needed external validation. I was a one-woman band of creative rocket fuel. But now? I need the clatter and chatter of people around me. It’s become a weirdly essential medicine: the visibility of others seeing me, the conversations that remind me I’m not just a diagnosis in a dusty medical file. It’s funny how you only realise how lonely Parkinson’s can be when you’re in a room full of people who aren’t. And turns out being seen matters. It’s the antidote to the grey of apathy.

Tiny oil paintings of sea pottery…each one a little prayer to the idea that we’re never really lost. We’re fragments, sure. But we’re still here.

If you’re around, come see the work. And if you’re not, just know that even when Parkinson’s is whispering “why bother?” in your ear, you can still stand up, grab the brush, and start again.

with love

E xxx

Exhibition Details

This is being held in Scotland and I know most of you are elsewhere in the world so I am hosting an online exhibition as well…

And you are all invited! It’s totally free.

All you have to do is add your email to the list and you will have access from the 21st June until infinity! If you feel like a peek at what I’ve been up to then please follow this link :)

Exhibition Sign UP

Your support and cheering me on really helps. Thank you 😘

Let’s talk about menopause and Parkinson’s, because clearly, managing one major health upheaval wasn’t enough for this overachiever body of mine.

So, I’m deep in perimenopause—flush-faced, wide awake at 3am, convinced I’m losing my mind—when Parkinson’s decides to crash the party like the most awkward plus-one ever. And what a duo they make: the hormonal chaos of menopause meets the dopamine drama of Parkinson’s. Sparks fly. Mostly in my nervous system.

Here’s the bastard: oestrogen actually has a neuro-protective role. That means it helps keep dopamine ticking along nicely. So when oestrogen starts sneaking off into the sunset (without so much as a kiss goodbye), the already-depleted dopamine in a Parkinson’s brain takes another hit.

Wild symptoms ahoy; a sudden spike in fatigue, anxiety levels doing backflips, and an overwhelming sense of “what the actual fuck?”

And don’t even get me started on the sleep disturbances. Is it menopause, Parkinson’s, or both? Who knows. All I know is I’ve become intimately familiar with my bedroom ceiling at 3:17am. Every. Single. Night.

Other highlights include:

• Heat intolerance on top of hot flashes: my internal thermostat is a broken rollercoaster. One minute I’m freezing, the next I’m fanning myself like a Jane Austen character who’s just seen Mr. Darcy.

• Mood swings layered with Parkinson’s apathy and emotional flatness: welcome to the paradox where you feel everything and nothing at once. Delightful.

• Memory glitches and brain fog thick enough to butter toast with.

And do you think the doctors are lining up to talk about this? Of course they're bloody not. The overlap between menopause and Parkinson’s is like the Bermuda Triangle of women’s health: confusing, under-researched, and most people just hope you stop asking questions.

But we deserve answers. We deserve to be part of the studies. We deserve to know how HRT might help or hinder us. (Some women with Parkinson’s report real improvements on it, while others don’t notice a thing—because surprise! Women are not one-size-fits-all.)

So if you’re going through this double whammy—feeling like your brain and body are conspiring against you—I see you. You’re not losing the plot. You’re navigating a wildly complex neurological and hormonal landscape with zero guidebook, minimal backup, and a lot more strength than you probably realise.

And if you’ve found ways to cope—HRT, herbs, humour, ice packs down your bra—I want to hear them. Let's make some noise about this, because the silence isn't helping anyone.

With love
E xx

I want to talk dystonia.

I’ve been caught in what the professionals charmingly call a “dystonia storm”—which, for the uninitiated, is like being possessed by a furious, muscle-twisting poltergeist with a grudge.

This one? An absolute masterpiece. My right thigh was the epicentre of rage, doing its best impression of a python mid-meal. It twisted, screamed, and bulged like it was auditioning for a horror film. I half expected it to burst through my jeans, alien-style.

Let’s break it down for those playing catch-up:

What is dystonia?

• Muscles spasm, twist, and cramp like they’ve lost the plot

• It can hit your toes, fingers, thighs, face, vocal cords... basically, if you’ve got a muscle, it's fair game

• It hurts (like, invent-new-swear-words level pain)

• Can be localised or decide to throw a full-body rave

• Common in young-onset Parkinson’s. Also, its own little nightmare

• Meds and Botox might help. Physio might help. Or they might just irritate it and make it worse. FUN.

For me, it’s often in my right thigh, though honestly, any body part can get involved when it feels spicy. At its worst, it feels like my muscles are trying to rip free from my bones. Yes, that delightful.

Also: breathing like a steam engine, nausea, and the kind of fatigue that makes sitting upright feel like a full-body workout. Why? Apparently lactic acid. Which I now hate with a passion.

And because Parkinson’s likes to get in on the action too, I’m basically being attacked from the inside and shoved into furniture on the outside. My bruises are now a fashion statement. Leopard print is in, right?

Shoes? Hilarious concept. Ever tried putting shoes on feet that curl like dying spiders? Dystonia makes footwear a full-contact sport.

I’ve probably had this lurking since childhood. I was the kid with weirdly stiff hands and mystery pains. Classic Parkinson’s + Dystonia = Chicken/Egg situation.

I found this video that helped with taping (no, not the hostage kind, though it feels close). I’ve now got tape on my forearms, thighs, shoulder, and hip. Haven’t figured out how to tape my eyeballs yet, but give it time. Highly recommend trying it if you’re desperate (aka, most of us).

And now, for my most-repeated life truth (drumroll):
Stress makes it worse.
Yes, yes, we’ve all heard it. But I swear it needs tattooed on my forehead at this point.

Also, for those wondering how one works through this: You don’t. It’s like trying to do admin while being tased in the thigh.

So, how did I survive?

• Warmth.

• Ginger tea.

• Rage-fuelled willpower.

• Swearing.

• Dark humour. (Nature’s coping mechanism.)

I try not to scare the people around me, but dystonia doesn’t exactly tap gently on the shoulder. It slaps you across the room and invites everyone to watch.

With love, bruises, and gritted teeth,
E xx

Right. I’m going to level with you. Brace yourselves—swearing incoming.

I am losing my bastarding mind over the relentlessly cheerful, hyper-motivated, colour-coded exercise crew that seems to pop up every time I blink. You know the ones: They’ve got branded water bottles, matching Lycra, and a suspicious amount of energy for people supposedly living with a degenerative neurological condition.

Now, before you lob a resistance band at me—let me clarify.

I am not coming for you warriors who are grabbing Parkinson’s by the parkies and kicking its arse up and down a Pilates mat. I love you. You are incredible. Exercise is, genuinely, the only halfway decent thing we’ve got in the toolbox. It’s not a cure, but it’s as close to a helpful middle finger at Parkinson’s as we’ve got. So yes—go you. Gold stars all round.

This rant isn’t about you.

This is about the bombardment. The avalanche of perky leaflets, chirpy videos, and professionals shouting “Exercise is medicine!” as if they’ve just invented it. It’s not the message I have an issue with—it’s the assumption behind it. The assumption that we just haven’t heard it yet. That we’re all sat on our sofas with our thumbs up our arses thinking, Oh gosh, if only someone had told me moving my limbs might help...

Spoiler: we know. I’d bet my non-shaky left hand that every person with Parkinson’s who’s engaged in any sort of community, group, or charity network has already been told this. Probably twice. Possibly in song.

So, Emma, I hear you ask, why the frothing rage?

Well. I used to be one of the active ones. I hillwalked. I wild camped. I once voluntarily went jogging. I was the kind of annoying person who got a buzz off ticking things off a to-do list and had a spreadsheet for fun. Motivation? I had it coming out of my ears.

And then Parkinson’s arrived and robbed me of my bounce. Not dramatically. Not with some cinematic, violin-backed moment. Just—one day it was gone. No spark. No get-up-and-go. Just an eerie flatness where ambition used to live.

And this isn’t just laziness, by the way. This is a non-motor symptom. This is dopamine deficiency. This is clinical, brain-based, medically-acknowledged lack of motivation. You can’t yoga your way out of it. You can’t gratitude-journal it away. It’s like someone unplugged me, mid-sentence.

Every now and then, I get a flicker. A tiny, random jolt of old-Emma energy. It’s like finding a crumpled tenner in the pocket of your jeans. Briefly thrilling—and then gone again.

So when I get bombarded with exercise initiatives, challenges, and that constant tone of, If you just try a bit harder you’ll be fine!, I don’t feel inspired. I feel like I’m being told off. Like I’m not doing Parkinson’s properly. Like the only reason I’m struggling is because I haven’t “helped myself.”

And I can’t lie—some of these campaigns? They’re either aggressively chirpy (just SMILE through the tremors, Sandra) or so bleak I feel like I need a nap and a biscuit afterwards. Where’s the middle ground? Where’s the honesty? The nuance? The acknowledgement that Parkinson’s is weird and annoying and sometimes trying to exercise with it feels like wrestling a greased octopus in a hoodie?

I wish some of these messages were written by people actually living this. Or at the very least, properly consulted. Because let me tell you something: no one, absolutely no one, with a chronic illness wants to be greeted with a chirpy “Hope you’re well!” in their inbox. It’s the chronic illness equivalent of stepping on an upturned plug.

So yes. Encourage us. Share the science. Be kind, be warm, be realistic.

But for the love of cockwombles, stop pretending we’re all just one vision board away from being motivational speakers in Lycra.

With love and mild fury,
E xx

There’s a weird thing that happens when you live with something like Parkinson’s. At first, you’re hungry for words. Your own, other people’s. You hoover up every forum post, every wobbly blog entry, every shaky TED talk delivered by someone who’s now a yoga teacher and definitely not bitter about it. You underline stuff in books like it matters. You bookmark articles. You screenshot quotes. You become a bloody collector of PD-flavoured insight.

But after a while?

Bloody hell. You’re full. Beyond full. You’ve gorged on Parkinson’s content like it’s your favourite chocolate—only now it’s melted down your front and you’re one more inspirational quote away from punching a mindfulness app.

Because it gets exhausting. Not just the disease (although, obviously, that too. Fucking knackered, thanks for asking). But the talking about it. The writing. The constant cycling through grief and anger and grief again. The repeated explaining of things you’d rather just not explain. The performance of it.

And the worst bit? You start to bore yourself.

You reread something you wrote a year ago and think, “Jings1, get a grip love.” Or you draft a heartfelt caption and then delete it because who actually wants this today? You try to pivot, write something else—something lighter—and still end up referencing dopamine like it’s a co-star in your tragicomic one-woman show.

Don’t get me wrong. It matters. Storytelling helps people feel seen. It helps us rage and cry and laugh without hurling cutlery. But you can’t live exclusively in the theatre of your own illness without occasionally wanting to set fire to the stage and run screaming into the sea.

Sometimes I don’t want to write about it. Or read about it. Or think about it. I want to write about something stupid. Like soup. Or seaweed. Or the man I saw trying to walk a rabbit on a lead.

Sometimes I just want to be—not as “someone with Parkinson’s” but as someone who also exists in the world outside the disease-shaped lens.

Because the truth is, if I keep eating this chocolate, I’m going to throw up. And not in a dignified, cinematic way. In a violent, feral, why-is-it-in-my-hair kind of way.

So, here’s to breaks. To silence. To writing about literally anything else for a bit. Parkinson’s will still be here when I get back. The bastard’s not going anywhere.

with love

E xx

P.S. Don’t worry I’ll be back on Thursday with more about PD 😂

There’s a particular kind of balancing act that comes with parenting while living with a chronic illness. It’s not just the daily juggle of responsibilities, emotions, and time—it’s the constant negotiation between who you want to be for your children and what your body allows you to be. For me, as a mother of two daughters, now 17 and 21, this balancing act has been shaped by Parkinson’s, an uninvited guest that arrived quietly but has made itself very much at home.

Motherhood is a landscape that constantly changes, even in the best of circumstances. Children grow, their needs evolve, and the emotional terrain shifts with every new milestone. But when Parkinson’s entered the picture, it altered the landscape in ways I never expected.

At first, I could pretend that nothing had changed. I pushed through fatigue, masked the tremors, and kept up appearances. I told myself that if I just tried harder, I could be the same mother I had always been. But Parkinson’s is insidious. It doesn’t announce itself with a single, catastrophic moment. It creeps in, stealing little things first—energy, stamina, spontaneity—until one day, I realised I was parenting from a place of depletion.

As my daughters moved through adolescence, I became acutely aware of the invisible cost of trying to ‘keep up.’ I didn’t want them to notice the changes, to feel burdened by a mother who was slowing down. So, I kept pushing. I attended every school play and sports event, even when my body screamed for rest. I kept pace with their emotional worlds, holding space for their worries and dreams, while mine became more difficult to articulate. I wanted them to have a mother who was fully present, but Parkinson’s chipped away at that version of me.

It’s a strange feeling—to be both there and not there. To be physically present but emotionally and mentally frayed at the edges. I worried that my daughters would sense the difference, that they would feel the unspoken gap between what I wanted to give and what I was able to offer.

But here’s the thing about raising daughters—you teach them strength even when you don’t mean to. They saw me persist through pain, adapt to change, and find new ways to be present even when the old ways no longer fit. They learned, perhaps too young, that life sometimes asks us to recalibrate our expectations. And in doing so, they are growing into compassionate, resilient young women who understand that love isn’t about perfection—it’s about showing up, again and again, in whatever way you can.

Letting go of who I thought I needed to be as a mother wasn’t easy. It felt, at times, like a quiet failure. But over time, I realised that the heart of motherhood isn’t in the doing—it’s in the being. My daughters didn’t need a mother who could do everything. They needed a mother who was honest about her limits, who modelled self-compassion, and who taught them that strength sometimes looks like asking for help.

Even now, as they step into adulthood, the guilt lingers. I think most mothers carry it—this sense that we could have done more, been more. But chronic illness adds another layer to that guilt. It whispers that if only I had tried harder, pushed further, I could have given them more of me. But the truth is, I gave them the best of what I had, even when that looked different than I had planned.

And perhaps that’s one of the hardest truths of parenting with a chronic illness: learning to forgive yourself for what you couldn’t be while celebrating what you still are.

Now, as my daughters step into the wider world, I see the gifts that have come from our shared journey. They move through life with a quiet empathy, a deep understanding of what it means to hold space for someone else’s experience. They have grown up witnessing what it looks like to adapt with grace, to meet uncertainty with resilience, and to offer compassion without judgment.

They know that strength isn’t always loud or obvious. Sometimes it’s in the steady presence of someone who stays, even when staying is hard. They’ve seen me redefine what it means to ‘show up’—learning that being present doesn’t always mean being physically capable but rather being emotionally available, even on the hardest days.

This quiet compassion, this deep knowing, is something they carry forward. I see it in how they navigate their own relationships, in the way they extend patience and understanding to others. They have learned that life doesn’t always follow a straight line, and that sometimes the greatest kindness is simply being willing to walk beside someone as they navigate the bends and curves.

My daughters and I have had to redefine success on our own terms. Success isn’t about doing it all—it’s about knowing when to pause, when to ask for help, and when to change course. It’s about creating a space where everyone in the family, including me, feels valued and seen.

Parenting with Parkinson’s has taught me that love doesn’t need to be perfect to be powerful. It has shown my daughters that strength isn’t always about pushing through—it’s also about knowing when to let go, when to adapt, and when to offer yourself grace.

As they step into their own futures, I hope they carry that lesson with them. I hope they know that even when life demands adjustments, they are never less for having to change direction. And I hope they remember that sometimes, the greatest strength lies in compassion—both for others and for themselves.

Because in the end, love isn’t measured by how much we do, but by how deeply we show up—even when showing up looks different than we imagined.

with love

E xx

There’s a story we like to tell ourselves about control. If we can name the threat, we can conquer it. Snake bites? Grab a club. Illness? Diagnose it, treat it, move on. This instinct to categorise and contain is ancient, perhaps even primal. Science gives us the tools to refine it, pinning down disease with tests and scans, dissecting the body’s failures under the cold gaze of logic. But what happens when the threat isn’t a single moment, a snake to strike down? What happens when it stretches across years, seeping into every corner of life, reshaping identity, eroding dignity?

This is what it feels like to live with Parkinson’s.

I lost time before I even knew what was happening. Years slipped through my fingers as my body changed in ways I couldn’t comprehend. I stumbled down stairs, struggled to keep up with life’s demands, and watched the person I had been—sharp, capable, present—fade into the distance. A stranger took her place, someone slower, someone perpetually tired, someone who couldn’t absorb the knocks of life as easily. I spent years trying to figure out who this new Emma was. She wasn’t the woman I had known, and yet she was the one I woke up with every day.

Time blurred. Days stretched and shrank, irrelevant and distorted. It felt like grief. And in many ways, it was.

Grief is often described as a series of stages, a linear path leading toward acceptance. But when the loss is chronic—when it is your own body betraying you—grief is not a straight line. It circles, an ever-present shadow. Some days, I escape its grasp, conquering small obstacles and finding moments of peace. Other days, I am swallowed whole by the weight of what I’ve lost. The cruelty of Parkinson’s is that it doesn’t settle. What is manageable today might be impossible tomorrow. Progress feels fleeting, and hope is a fragile thing.

Society, too, is quick to push us into the shadows. It’s convenient to view people with chronic illness as fading, as somehow ‘less alive.’ We become invisible, little ghosts haunting a world that no longer sees us. But we are here. We are not gone. And we are not without purpose.

The narrative that disabled or chronically ill people don’t want to work, that we are content to languish on benefits, is a damaging and dehumanising myth. We are not idle. We are not without ambition or drive. We want to contribute, to participate, to be part of a society that values our skills, our experiences, our perspectives. But the structures of work are built for the able-bodied, with little room for adaptation or flexibility.

We are expected to fit into systems that were never designed with us in mind. And when we can’t? We are discarded. Seen as burdens. Penalised.The UK government’s proposed cuts to disability benefits perpetuate this narrative of blame. They tell us that if we are not working, it is a failure of will, a lack of effort. But the truth is far more complex. We are not asking for handouts—we are asking for a society that acknowledges the realities of living with disability. A society that makes space for us, that values what we bring, and that adapts its systems to meet our needs.

We want to work, but on terms that respect our bodies and our limits. We want to contribute without sacrificing what little health we have left. We want to live with dignity, not as objects of pity or scorn.

Parkinson’s—and any chronic illness—feels like an invasion. It is a force that alters everything, yet it moves slowly, stealthily. You don’t wake up one day and realise you’re disabled. It happens in increments, so small that you don’t even notice until years have passed and you no longer recognise the person in the mirror.

This slow erosion is what society fails to grasp. The loss is not just physical. It’s the loss of identity, of certainty, of belonging. It’s the grief of becoming a stranger to yourself. And when that grief is met with a system that punishes you for not ‘overcoming’ it fast enough, it compounds the loss.

There’s another cruelty in this experience—self-pity. The phrase itself is laced with judgment, implying weakness, indulgence, even manipulation. Society is quick to dismiss those who dwell in grief, who mourn the life they’ve lost. But what if self-pity is not a flaw, but a necessary act of survival? What if it is the only space where we are allowed to fully acknowledge the magnitude of our loss?

I feel pity for what I have lost. For the parent, the partner, the friend I had hoped to be. For the life that slipped through my hands without me even realising it was gone. That grief, that pity, is not weakness. It is truth. And it deserves to be honoured, not shamed.

What we need is not judgment, not punishment, but compassion. A society that values its disabled and chronically ill members is a society that thrives. When we are supported, when systems are built to include us rather than exclude us, we can contribute in meaningful and powerful ways. But when we are cut off, when benefits are slashed and support is denied, we are left stranded—fighting not just our own bodies, but a world that refuses to see us.

Grief never fully leaves those who live with chronic illness. Like an involuntary declutter, it strips us bare, leaving us to navigate the vast, unfamiliar space that remains. Over time, we fill that space with new skills, new hopes, and new ways of being. But we never forget what was lost.

The UK’s proposed benefit cuts threaten to strip away even that hard-won space, leaving us to fight for survival in a system that sees us as expendable. We deserve better. We deserve a society that recognises our worth, that adapts to our needs, and that refuses to let us disappear into the margins.

We are not ghosts. We are here. And we are fighting to be seen.

with love

E xxx

Ask Me Anything!

Let’s talk about food. One of life’s great joys, right? The smell of fresh bread, the perfect cup of tea, that first bite of something so delicious you actually stop mid-chew to appreciate it properly.

But add Parkinson’s into the mix, and food becomes…complicated.

First, there’s the Great Cutlery Fuckery. I used to take forks for granted. Now? Now, they are wobbly-spikey-betrayal sticks, flinging my carefully speared potato across the plate (or worse, onto the floor, where it is immediately claimed by the dog). Knives? Oh, I love when my hand decides that mid-slice is the perfect time for one of those parky jerk your hand to the side like it’s directing traffic. Arg.

Then we have the juggling peas. Have you ever tried chasing a single pea around a plate with a slightly shaky hand? It’s a sport. A battle of wills. Me vs. the Pea. Who will win? Usually, not me. The pea inevitably escapes, shooting off the plate like a tiny green rocket, landing somewhere mysterious. I say somewhere because, let’s be honest, I probably won’t find it until next week.

Parkinson’s brings a whole buffet of food-related oddities. Swallowing issues? Check. Weird appetite changes? Oh yes. One day I’m ravenous, the next, the thought of food makes me want to lie down in protest.

Some people with Parkinson’s also lose their sense of taste and smell, which adds another frustrating twist to the whole food experience. I don’t want to sit down to your favourite meal, only to find it suddenly bland and lifeless, like eating cardboard with a side of disappointment. The aroma of freshly brewed coffee? Gone. The sweet, tangy hit of a perfectly ripe strawberry? Barely there. It’s like your senses have ghosted you, leaving you to wonder if your cooking skills have taken a nosedive or if your taste buds have simply given up. But even when food becomes more about texture than flavour, I hope there’s still comfort in the ritual—sharing a meal, the warmth of a cup in your hands, the satisfying crunch of something perfectly crispy.

The Levodopa timing minefield? A daily puzzle of when to eat so your meds actually work. Too much protein at the wrong time? Oops—dopamine delivery delayed.

And yet, despite all of this, food is still one of my great joys. I just have to make a few adaptations. Like choosing easy-to-eat-finger food when my hands are feeling particularly rebellious. Or accepting that soup will end up down my cleavage, and that’s just part of the experience now.

So, if you ever see me chasing a rogue pea around my plate, just know—I’m fine, I’m determined, and I’ll probably win. Eventually. Maybe.

And if not? Well, the dog’s always happy to help.

with love

E xx

Winter hath returned to Aberdeen, Scotland - again. Wet, cold and wild - not a favourite of my Parkinson’s or my morale. But every year on this particular week it gets a bit stormy.

Why? It’s my birthday time (24th)

I’m not a fan of these types of celebrations, being in the spotlight isn’t exactly my idea of fun. But you know, one must endure - cue wine.

Anyway, over the last few years I’ve tried to give back in someway at this time. I thought I’d share some of the causes, artists, writers etc I am supporting - incase you might want to support them too:

• The Scottish Refugee Council - Bought their tote bag and pin badge.

• Anne Louise Avery - I can’t afford a full subscription but you can buy individual posts (I recommend the recipe ones!🤤)

• We Are Here Scotland - Donated to the Creators Fund

• Funds raised from my charity print to Refuweegee £30 🎉

So, it’s not a lot but we can only do what we can! I also believe in sharing people’s work and posts where possible. Now it has to be acknowledged that social media isn’t my best skill set but hey! I try.

Anyway, on with some Parkinson’s news. The free Handshake ebook has had over 250 downloads! I’m very chuffed and thank you. Some of the donations have lead to my being able to create the website and I am looking into a database for the directory.

I am going to reduce this letter to fortnightly. As mentioned last week I need some adjustments (lotto win?) to my personal finances and will need to dedicate some time to developing those areas.

But worry not.

Every second Thursday you’ll get this letter and every second Tuesday you can enjoy the podcast. Also over at Handshake I do a weekly round up of the best blogs, pods and vlogs the Parkinson’s community has to offer!

I am available in other places, as well.

Anyway I am off to hide in a cupboard before the impending b/day.

with love

E xxx

Well, here we are approaching that ridiculous time where portions of the world lose their collective minds. No I don’t mean world politics but Valentine’s Day.

I’m not a fan of the rampant commercialisation and nonsense. BUT I am for sending out extra love to our loved ones, friends, neighbours and most importantly, the nasties. Cos’ you know, love trumps hate any day.

Anyway.

As you know things have been active in Emma world and activity has a cost. So needless to say my particular version of Parkinson’s demands a sacrifice when I get over excited. Cue cognitive jelly and especially those internal tremors. I don’t rightly know how to describe them but I imagine under my skin it’s all whizzed up like a smoothie. I always find the tremors give me dyspepsia type feelings and a sense my muscles have run a marathon - leaving me feeble and weak.

On top of that I have a cold.

‘Do be quiet, Emma. We told you this would happen’

Yes, dearest readers, you did.

I must heed your wisdom in future - she says with fingers crossed behind her back. Promise.

All this does lead to some positive action. As I have been so Organised and Productive I have cut a lot of superfluous shit out of the way. Which is a long way of saying I’m not going to write the Who Stole My Dopamine or Tumbled books.

I believe I witter enough here without adding to the overstuffed airwaves by adding more memoirs about PD. As I have begun collating Handshake, I have realised there are so many good stories and memoirs1 out there that mine is just adding to the noise.

That leaves me lots of time to devote to my other projects that frankly, are more life enhancing than my moaning about an inexplicably annoying incurable disease.

I shall continue to swear profusely about the crapness of PD here and I welcome your suggestions on any area you’d like me to write about… (hit reply or comment)

I wanted to touch on money. I know, taboo central here. But stick with me kid, I’ll see you ok.

Many of us PD folks are affected fiscally by our disease - unable to work, medical bills, all the extras that people with chronic illness need2 and so on.

Personally, I get no support from the state and can’t easily work in normal jobs. I make a little money from this letter and from other writing, art - a smattering. I am incredibly fortunate to be supported by a partner. We live frugally on one wage (a Scottish social worker £43000/USD53000) and have 1 and 1/2 dependant kids. One of whom is about to embark on university. We don’t have holidays and have a very battered old car. And yet I think we have a rich, abundant life…it’s not all about the money.

But it might about to be - it’s getting harder. Like everyone we have noticed the bills ramp up beyond our comfort zone.

But there is another issue facing the chronically ill and disabled. Regimes across the planet are scapegoating us and cutting health services and social welfare benefits like Danny Trejo on speed. Why? Because we are easy targets and they don’t give a shit.

But we can use our voices, stamp our sticks and run over their toes with our chairs…

We can get activist about it; start by sharing our stories through social media, blogs, or speaking opportunities to raise awareness. Connect with disability advocacy groups that fight for financial security and offer ways to get involved. Contact politicians through letters, petitions, or town halls to push for policy change. Engage in direct action, whether through online campaigns, protests, or mutual aid efforts. Use media and public pressure by working with journalists, amplifying petitions, and joining larger movements.

With PD especially popular3at the moment, there’s a hell of a lot of us… so let’s get out there, after the apathy has subsided :)

Anyway, as we approach the university scenario I will have to find a way of working with a more sustainable wage. Preferably from home, preferably doing something writer-y, internet-y, art-y. If anyone has any ideas or jobs or anything that you’d like me to perform do get in touch.

with love

E xxx

It’s been another mad week. Thankfully not involving hospitals, auditions or anything else of that nature.

No, this has been an entirely self-inflicted week of knackered-ness. But in among the building of things, I realised that despite you reading all about my Parkinson’s and family moaning - you possibly don’t know much about me - Emma.

So in an effort to ‘take it easy,’ as I have been advised, I shall give you a quick get to know me…thing. So apart from being a short, slightly mad Scottish woman (who has had the nick-name pocket battleship)…

As you already know, I write about life with Parkinson’s. Because if I have to navigate this unpredictable, fucking annoying disease, I might as well document the chaos.

I also run Handshake, a hub where people with Parkinson’s share their stories, creativity, and experiences without the medical jargon or doom-and-gloom. I finished the website this week - and it’s shiny!(Handshake Website)

But Parkinson’s isn’t my whole story. I also believe in the power of small, intentional moments—whether it’s creativity, mindfulness, or simply making space to breathe. Tiny Mindfuls is where I explore how we can slow down and find calm in daily life. And for those who need a creative community, Wild Minds Club is here to help artists, writers, performers and makers (especially those with chronic illness) keep their creative spark alive.(Coming feb 10th)

I’m also a painter, working mainly in oils. My art is often inspired by nature—landscapes, shifting light, and quiet moments that hold something deeper. It’s a way of seeing the world differently, of capturing what words sometimes can’t.

So here I am writing, painting, swearing when necessary…

I know this is just a quickie today. But you know…Parkinson’s 🤣

with love

E xxx

This is in support of Handshake - the hub for Parkinson’s

Let’s be honest—when you’re diagnosed with Parkinson’s, they don’t exactly hand you a helpful guide. Maybe you get a pamphlet. Maybe you get a concerned look from your doctor. But mostly, you get thrown into the deep end with a condition that rewrites the rulebook on everything.

That’s where Who Shook My Hand? comes in. This is not a dry, clinical guide. It’s a book full of real-life hacks, humour, and practical advice from people who actually live with Parkinson’s. No medical jargon, no fluff—just straight-talking, slightly sweary, and ridiculously useful tips on how to navigate life when your dopamine decides to exit stage left.

And the best part? It’s completely FREE. Just an easy download because this kind of info should be accessible to everyone.

What’s Inside?

Straightforward advice on dealing with diagnosis, staying active, managing energy, using tech to make life easier, and finding joy in creativity and movement. Plus, tips on travel, accessibility, and navigating social life without losing your mind. No fluff—just real talk from someone who gets it.

Choose Your Version:

• Glorious Technicolor – A beautifully designed, full-colour version because you deserve something visually stunning.

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I wrote this because I wish something like this had existed when I was diagnosed. If you or someone you love has Parkinson’s, grab it, share it, pass it along. The more people who have this info, the better.

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Parkinson’s may shake us, but we shake back. 🤣

When a world leader starts acting erratically—stumbling through speeches, making bizarre decisions, or suggesting vodka as a medical breakthrough—people start whispering: “Could it be Parkinson’s? Dementia?”

And honestly? That drives me absolutely fucking nuts.

Because being an unstable, power-hungry megalomaniac is not a symptom of Parkinson’s, dementia, or any other neurological condition.

It’s a symptom of being an unstable, power-hungry megalomaniac.

Do you know what is a symptom of Parkinson’s? Dragging yourself out of bed when your limbs feel like they’ve been cast in concrete. Trying to button a shirt when your fingers have decided they work on a three-minute delay. Summoning the energy to exist in a world that treats you like a cautionary tale while somehow not attempting to take over former satellite states.

But sure, tell me more about how these men2—men with boundless energy for warmongering, speechifying, and just generally being a menace—must have Parkinson’s, while I can’t even get a kettle to pour properly because my hands think they’re conducting a free jazz concert.

Chronic Illness: Now With Bonus Dictators!

It’s bad enough that illness already carries a stigma. People hear “Parkinson’s” and assume you must be frail, elderly, and one foot in the grave. (It’s not just an old man’s disease. Young-Onset Parkinson’s exists. I should know.)

And if it’s not that, then it’s the other end of the spectrum: the whole “tragic inspiration” thing. Either way, society loves a good, tidy narrative. You’re either the fragile victim or the brave warrior, but lord forbid you’re just a person trying to live their life.

And now, apparently, we can add potential dictator to the list of things people assume when they hear "neurological disorder." Because, obviously, shaky hands and poor dopamine regulation must be what’s causing these guys to imprison journalists and rewrite history books.

It’s not just Parkinson’s. Any time a high-profile person acts in a way that makes people uncomfortable, suddenly there’s armchair diagnosing all over the place. That billionaire being an arrogant, emotionally oblivious windbag? ‘Must be a -tism’ That political leader refusing to make eye contact while making deranged decisions? Sounds like fill-in-blank!

Here’s an idea: maybe they’re total cockwombles.

Neurodivergent folks spend a lifetime being told we’re the ones who need to adjust, behave, learn to communicate properly, mask traits for the comfort of others. And yet, the moment a public figure starts acting like an antisocial disaster zone, suddenly it’s: “Ah, see, it must be their -tism!”

It’s offensive. It’s lazy. And it actively harms people who are out here just trying to live their lives without being compared to the worst examples of humanity.

Maybe He’s Just an Arsehole?

So, here’s my plea: next time some world leader starts behaving like a Bond villain with a head injury, maybe—just maybe— they’re simply a fucking awful person rather than reaching for a neurological diagnosis as an explanation.

And if, by some chance, they do have Parkinson’s, dementia, or -tism? It still doesn’t excuse them. Plenty of us with neurological conditions are out here not committing crimes against humanity.

Now, if you’ll excuse me, I need to lie down because writing this took more energy than any of these guys expend pretending they have a conscience.

with love

E xxx