Welcome to this monthโs Who Stole My Dopamine? rundown where Emma swears profusely at the worldโs most irritating1 disease.
Yes, dearest readers, things have changed here a little. I was getting frustrated at thinking, writing, breathing, farting Parkinsonโs every damn day. So I grabbed the stick by the proverbials and had a shake-up. (ha-bloody-ha)
I shall continue to wow you with my erudite use of the Scottish ability to interject every sentence with language worthy of a sailor. And I will endeavour to share the less talked about bits of PD only rather than once a week you will have a bumper issue once a month!
โBut, but!โ
I know, this may be a letdown to those of you who hang on in there for dear life waiting for my weekly instalment but worry not these bumper packs of misery will be extra long and extra funny. Promise.
โBut what the hell are you doing with the rest of your pathetic life, Emma?โ
Iโm glad you asked.
Did you know I paint? Well, I do and very soon you will be able to see them.
The Chronicles of Don John โvillainy, revenge, lust and murder - set in 17th-century Sicily.
And of course, Tumbled is getting bashed into book formโฆ
Now we have that out of the wayโฆon with the dopamine theft!
This monthโs issue:
Dog shit decor
Dog shit everywhere is no way to start a holiday.
The morning of our leaving to go on a 1500-mile road trip went something like this:
Tika, the usually composed collie, suddenly began to frantically pace and whine but before we could rush her downstairs out of the flat, she had a violent case of โtummy troublesโ and unleashed a wave of havoc in the house. The following can only be described as a "poo-nami" of epic proportions. Wretching whilst trying to clean up sloppy dog shit isnโt the way I would usually recommend beginning a trip. I kid you not. It was everywhere.
A sudden loud hissing sound echoed through the house and panic ensued as water started pissing out from the cupboard. The boiler had decided that this was the perfect moment to spring a leak! With silicone paste in hand and a few creative expletives - we managed to temporarily patch up the leak and shut off the water supply. We had to hope it would hold. (it did)
Now the house had the unique aroma of shit and damp. ๐คข
As if the house disasters weren't enough, we were delayed by a late delivery. This was an early 16th birthday present for Daisy. A surprise of a camera which we thought she would love to have on holiday. But the bloody courier company was late. Now Daisy (who hates to stand still for more than a nanosecond) was impatient to be on the roadโฆnot knowing this was for her! Her frustration was palpable as she paced back and forth, muttering about the crapness of her parents.
Eventually, the camera arrived and all was well. She revised her poor opinion of us and decided that it was all going to be good after all. Amazing how teenagers flip from death threats to joy when there is something in it for them.
Our very tiny car was stuffed to the brim, and a re-packing session was in order. Bags were jiggled and the family bickered and negotiated as they redistributed items, all while Tika watched with her tail tucked firmly between her legs.
Finally, the car engine roared to life and the journey officially began. We might have faced a poopocalypse, a delivery debacle, a packing pandemonium, and a watery fiasco, but we are a damn fine team once on the road.
World Parkinson Congress
ยกOlรฉ! I wasnโt at the World Parkinson Congress.
Ah, FOMO, the old "Fear of Missing Out" - the invisible hand that drags us into the depths of despair when everyone else seems to be living it up. Speaking of missing out, July threw a party in Barcelona that was the talk of the town โ the World Parkinson Congress. It was like a Parkinson's-palooza, a gathering so epic that even my apathetic brain fired up.
The social feeds were awash with stories of triumphant tremors and epic escapades with dopamine. Everyone seems to have been trading the latest medication tips and showing off their "shake-a-licious" dance moves.
Except me. (Oh and some of you reading this)
So why didnโt you go, Emma?
Mainly, apart from writing this letter, I donโt really feel I am an advocate or certainly any sort of expert on Parkinsonโs. Iโm just a person, with a rather irreverent take, who happens to have PD. I suspect my contribution to the community stops at your inbox.
Secondly, I donโt have the financial resources - or the physical ones. As you can see I had a full-on summer planned and any more events would have put me out of commission.
So, fear not, while the Parkinson's posse might have had their moment in the Spanish sun, I was embracing my inner lounge champion. Who knows, maybe next time they'll be the ones with FOMO as they hear tales of my legendary solo dance party ๐คช
(Although some of you who were there will have noticed I did pop up in Jonnyโs lecture where he kindly referenced my art)
Car Journey Agony
1500 milesโฆ
Ok, it wasnโt a continuous trip but we racked up a lot of miles on this little island. And my body let me know all about every turn, twist, pot-hole and speedbump.
Our adventure began with the packing of essentials: a hefty supply of cushions, a magnifying glass (because reading tiny road signs is apparently an Olympic sport), and a collection of "oops-I-dropped-that-again" spill-proof cups. Armed to the teeth, we set off on the open road, ready to conquer anything that came our way. Well, almost anything.
Turns out, while the GPS could navigate us through every nook and cranny of the vast highways and byways, it had a glaring blind spot when it came to detecting potholes. It was as if every road had conspired against me, daring me to dance the Parkinson's two-step whenever we hit one of those bastard craters. Then there were the speedbumps - it was like living through a physics experiment where the laws of motion were rewritten by an overenthusiastic toddler.
And speaking of challenges, let's not forget the delicate art of snack consumption. Trying to eat a sandwich while your hand decides it wants to practise interpretive dance. You gain a modicum of control only to have it spring back into action just as you take a bite. Inadvertently creating a new form of sandwich art. Thanks, PD.
Ah, the agony of being trapped in a seemingly endless stretch of road within the confines of a car seat. My body's protest against stagnation grew louder with every passing mile. The stiffness seemed to settle in like an uninvited passenger. As we racked up the miles, my body and my Parkinson's joined forces to create a symphony of quivers and wobbles, a dance of unpredictability that would make even the most accomplished contortionist raise an eyebrow. Ouch.
The importance of movement and exercise in the realm of Parkinson's became blatantly obvious. Yes, ok you lotโฆI will consider taking up yoga ๐
And let's not forget the frequent and urgent pee stops, as my bladder staged a coup of its own, asserting its need for attention with unwavering persistence. The tour of Englandโs finest public conveniences.
However, it was a great trip and my family were amazingly patient - here's to the 1500-mile road trip that proved that even Parkinson's couldn't dampen the spirit of adventure.
Family reunions
Visiting your family every 12 years is probably about right - for everyone.
(NOTE: We had 2 reunionsโฆone with my family on the south coast & a second one with Rossโs family in Yorkshire - because we are mad.)
Emmaโs Family:
Itโs not that our family arenโt close, in fact, we get on incredibly well. Itโs just that we are rubbish at maintaining contact and the years slip past until you realise it has been twelve of the buggers and there is a new generation on the rise!
Now, before you start imagining a dramatic scene complete with tearful reunions and long-lost siblings miraculously finding each other, let me set the record straight. Our family isn't the cast of a soap opera; we're more like the quirky ensemble of a heartwarming indie film.
We get along like old friends who never skip a beat when they finally meet after years of separation. It's just that, well, we're simply terrible at staying in touch.
But turning up with Parkinsonโs in tow wasโฆinteresting. Luckily I was having a good day so most of my wilder PD moments were tucked away. I know they worry and I know that each time they see me I will be diminished in health. I donโt know if I can stand the way they will begin to look at me but I guess weโll need to wait another decade to find out.
So, yes, it's been twelve years, twelve wonderfully messy and unscripted years since our last meeting. Imagine the laughter that filled the room as we shared tales of our misadventures, our triumphs, threads of shared experiences, unconditional love and a healthy dose of cheeky banter. And, oh yes, the wine was flowing!
Rossโs Family:
A reunion at a charming caravan park nestled by the coast - a caravan park that promised sunny beach days, fun parks, and unforgettable memories. Oh, how reality has a way of shitting in the face of expectations.
The weather, for starters, decided to play a game of "Let's see how many different ways I can rain on their parade." What was supposed to be a weekend of sandy toes and salty air turned into an indoor escapade as the heavens unleashed torrential downpours.
Each family member, in a stroke of brilliance, had brought their beloved four-legged friends along for the ride. Only the dogs really werenโt into sharing a small caravan. Especially our Tikaโฆshe isnโt wild about other dogs.
Our caravan became the party van with far too much wine consumed (even I am saying that!!) But it was brilliant to spend time with Rossโs cousins and have mini adventures all over beautiful Yorkshire.
In the end, despite being rain-soaked and the Great Canine Showdown of 2023, these family reunions are like rare gems โ a bit rough around the edges, occasionally absurd, but oh-so-precious.
The English Seaside
Where Emma discovers she has been a frightful snob and was really quite taken with the seaside experience.
โOnce upon a time, there lived a lady named Penelope. Penelope had always considered herself quite the connoisseur of refined experiences. She had a taste for art galleries, opera performances, and tea served in delicate china. The thought of spending summer at the traditional English seaside appeared utterly absurd to her.
And yet one summer she found herself embarking on one such holiday. The sights and sounds that greeted her were nothing short of an assault on her sensibilities. Children frolicked with ice cream, seagulls dive-bombed unsuspecting tourists, and the smell of fish and chips wafted through the air like a pungent symphony.
"Oh, the horror!" Penelope exclaimed, clutching her lace handkerchief to her nose. "This place is positively awash with ghastly revelry."
Penelope was reluctantly drawn into the realm of kitschy souvenir shops and exuberant carousel rides. She turned up her nose at sandy towels, sunburned noses and swimmers adorned with rubber rings akin to oversized bangles.
Yet, as days trickled by, Penelope noticed something quite extraordinary. Beneath the surface of garishness lay an undeniable aura of unadulterated joy. Families revelled without a care and friendships were forged over shared escapades.
The traditional English seaside was not a haven for the snobbish elite, but a haven for unabashed happiness. It was a place where the art of delighting in simple pleasures are celebrated, where the worries of the world washed away with the tide.โ
Random bits
Some things that have caught my attention this month:
The comedian Phil Jerky has a great line in PD jokes.
Ending Parkinsonโs Disease: The Book is available for pre-order here.
All the stuff that happened at the World Parkinson Congress can be found here.
May not be entirely accurate but it IS damned annoying.
So glad you got home OK! It was absolutely brilliant to see you all. Do tell the crochet maven that I loved those black and white flashes by her eyes ๐๐๐ xxxxxx
och hoots mon an awa ye go...very glad to see you back again. And soooo pleased about your decision to put the fucking P thing to the back of the line. Your language was very moderate given the stress of the pre-trip canine cacastrophe and the leaking boiler. You must all be very balanced and/or on drugs to have such a jolly summer holiday - in every family I've been part of summer holidays have at least one total meltdown/divorce type scenario...but maybe that's just my version...