Tumble & Grind

Travel, Hallucinations, Joy, Injuries & The Chronicles of E

Welcome to the monthly dispatch of Who Stole My Dopamine?

A litany of swearing, frustration and wine consumption.

Oh, it’s not *that* bad...Do enjoy!

with love

Emma x

This month’s issue:

1. Triumph Over Turbulence

2. Mind Benders

3. Joy Sucker

4. Minor Injuries

5. The Epic Chronicles of Emma

Triumph of Turbulence

Let’s delve into the world of travel with a unique perspective - that of a traveller grappling with Parkinson's disease. Travelling is supposed to be an escape from the ordinary, a chance to relax and have fun. However, when you're dealing with the arsehole that is Parkinson's, the journey can present unexpected challenges.

Be open with your travel companions about your needs and to airport/airline staff, family, hotel staff and so on. Use your Sunflower lanyard to secure wheelchairs and other help.

The Pressure to Appear Carefree - Travelling often comes with the expectation of having boundless fun, and this can put extra pressure on those with Parkinson's. It's important to remember that it's okay to have your ups and downs.

Travelling Light - Packing light is essential, as heavy bags can exacerbate symptoms. Opt for versatile clothing and consider investing in lightweight luggage. Make room for necessary medical supplies, and always carry a list of your medications and dosage schedules.

A Sort of Sleep - Unfamiliar beds can be a source of discomfort for those with Parkinson's. Be aware of too cold or too hot conditions. I feel the cold so travel with a spare rug or hot water bottle. But the heat can send our symptoms doolaly as well.

Timing is Everything - Managing your medications while changing time zones can be tricky. Use medication organizers and set alarms to stay on track. Don't be afraid to let your travel chums know about your schedule; they can help remind you and make adjustments as needed.

Delicious but Digestible - Trying new foods is a highlight of any trip, but it can be a challenge for your digestive system. Watch out for the dreaded constipation!

Overcoming Guilt - It's common to feel guilty about potentially slowing down the travel group or impacting their enjoyment. Remember that your loved ones want you to have a good time too. I tend to let everyone know I will be planning roughly one day of activity and one day of chilling. It can be afternoon/morning etc find your own rhythm.

Laugh It Off - Traveling with Parkinson's can lead to some comical situations. Embrace the humour in the unexpected, like wobbling on cobblestone streets or decorating your white shirt in red wine. Laughter is not only the best medicine; it's also a wonderful travel companion.

Leave your suggestions and experiences in the comments :)

Mind Benders

In the midst of everyday life, I find myself walking the thin line between reality and illusion. Living with Parkinson's disease brings a restless companion - hallucinations. These hallucinations don't seem to be (anecdotally) what others experience. They are peppered with religious iconography and death. Interesting as my upbringing was devoid of religious influence.

These visual disturbances merge seamlessly with the mundane. Faces, unknown or forgotten, materialise before me, some bearing the marks of time's passage, while others appeared as if plucked from the annals of history. Often the hands of the dead creep up through the ground, grabbing at my feet. No wonder they curl dystonically away from the earth! Sometimes there is a person loitering on the street only they aren't truly here. I'm willing to accept they might be somewhere - just not here and now.

Even as a child, I experienced these visuals. Had Parkinson's always been a part of my life, long before it was clinically diagnosed? These hallucinations only strengthen my conviction that the disease has silently coexisted with me, altering my perception and understanding of the world. The idea that my life's trajectory has always been intertwined with this enigmatic condition.

The challenges of living with hallucinations are a constant reminder that life's mysteries cannot always be neatly explained. Much of my time is spent rooting myself into reality. The common reality - not the time-space-fractured one that sneaks out of the corner of my eye.

They are fragments of an intricate puzzle, challenging me to understand not only the disease but also the depths of my own mind.

You can find out more about hallucinations in Parkinson’s here.

Joy Sucker

PD can prevent you looking forward to ANYTHING! - G Masson

The impact of Parkinson's extends far beyond the physical symptoms; it deeply affects emotional well-being, making it a constant struggle to look forward to life's simple pleasures.

Every day feels like a guessing game and the fear of wild symptoms looms constantly. The anticipation of tremours, rigidity, pain, drooling you name it - often eclipses the excitement of planning for the future. You begin to wonder if it's worth the risk of venturing out when symptoms might overshadow events.

Even when you dare to step out of your comfort zone, Parkinson's exacts its toll. The data shows that post-exertional fatigue and worsening of symptoms in the days following an activity is a common experience. This cruel "payback" can be disheartening and demotivating. It's as if life demands a fee for every ounce of enjoyment. Simple tasks become Herculean feats and the drain that follows can be overwhelming. This demotivates us and creates a formidable barrier to maintaining a sense of purpose and fulfilment.

Perhaps one of the most emotionally taxing aspects is the need to repeatedly explain its nuances to others. Friends and family, while well-intentioned, may not fully comprehend the unpredictability of this condition. The constant need to clarify that you can only manage a short event or might experience 'off' periods creates a sense of loneliness and detachment. Anxiety, depression, and frustration often become unwelcome companions in this journey.

Despite these challenges, we often demonstrate remarkable resilience and determination. It is crucial to raise awareness and offer support by showing empathy, understanding, and a willingness to listen to our experiences.

Fortunately, in the midst of these challenges, there's a silver lining—the incredible support networks available. These networks, include social media groups, newsletters and Parkinson's-friendly activities.

In today's digital age, the Parkinson's community has found solace and camaraderie on social media platforms. Online groups and forums offer a space for individuals to share their experiences, vent their frustrations, and celebrate their triumphs. It's a place where the dopamine may be in short supply, but the camaraderie is abundant. There's a certain humour in knowing that together, we don't have enough dopamine to sustain a negative outlook.

There are some excellent newsletters out there sharing stories and making it less lonely. Who knew that a humble newsletter could be a source of empowerment?

As we navigate life with Parkinson's, we discover a plethora of PD-friendly activities tailored to our unique needs. From dance classes to exercise programs, these activities not only help us manage our symptoms but also connect us with a community of individuals facing similar challenges.

It's as if the Parkinson's community has collectively decided that we won't let our dopamine shortage steal our joy.

Minor Injuries

Minor injuries into major comedies…

Ah, the joys of living with Parkinson's – a life filled with unexpected twists, tumbles, and spills that turn everyday tasks into a hideous mess.

Morning Brew Battle:

Our day begins with the noble quest for that holy grail of adulthood – the morning cup of coffee. But when you have Parkinson's, a simple task like pouring a cup can turn into a slapstick masterpiece. As our hero tries to pour coffee, they manage to miss the mug entirely, drenching the counter, themselves, and the cat, who just happened to stroll by at the wrong moment. The cat's indignant meow adds music to the morning.

The Dance of the Dangerous Knife:

Next up, breakfast. The hero bravely wields a knife, but Parkinson's decides to spice things up. As they attempt to spread butter on toast, the knife takes on a life of its own, somersaulting through the air and narrowly missing their toes. The toast, however, isn't so lucky – it takes a nosedive into the sink nearby.

The Laundry Basket Ambush:

It's a well-known fact that living with Parkinson's means sudden, surprise encounters with household objects. Our hero stumbles while trying to fill the laundry basket. But to the basket this means war! They somehow end up inside it, arms and legs tangled in a heroic but failed struggle to escape. The laundry basket wins this round.

Bruises, The Mystery Novel:

Fast forward to mid-morning, and our hero discovers a collection of mysterious bruises on their arms and legs. Parkinson's has bestowed upon them the power of time travel – bruises from yesterday's mishaps are only now making their dramatic entrance, leaving our hero to ponder the origins of these living room battle scars.

Twisted Fingers Tango:

Lunchtime arrives, and it's sandwich-making time. But alas, the bread has other plans. Our hero's fingers decide to do the twist, and they're left with a sandwich that looks more like abstract art than a meal. The sandwich tastes delicious, but they can't help but wonder if Jackson Pollock would have been proud.

The Black-Eye Chronicles:

In the afternoon, our hero attempts to tidy up the living room, only to stumble over a rogue slipper and collide face-first with the sofa. The sofa, being an unforgiving foe, gives them a black eye that rivals any prizefighter's. But instead of sulking, our hero decides to rock the pirate look and starts practising their best Captain Jack Sparrow impression.

Artistic Endeavours:

As they continue their cleaning escapades, a slight tremor in their hand sends a carefully positioned family portrait crashing to the floor. Picasso would be proud of this new abstract masterpiece that they've accidentally created – "The Portrait of a Parkinson's-Stricken Family." A masterpiece in clumsiness, if you will.

The Grand Finale:

Finally, as the day winds down, our hero attempts to pour a glass of wine, but Parkinson's has a grand finale in store. The wine glass performs a dazzling pirouette, sending a cascade of liquid not only into the glass but also onto the floor, the table, and their lap. It's a standing ovation from the kitchen appliances.

After all, when life gives you Parkinson's, you might as well turn it into a comedy act!

With special thanks to my Twitter chums for the inspiration.

The Epic Chronicles of Emma

Right, I was going to do you a nice wee video of my day but it turns out I can’t film for shit! So you’ve got this instead:

(8:00 AM)

My day begins with a dramatic struggle to escape the clutches of my cosy blankets. My loving partner, understanding the daily stiff-as-a-board phenomenon, brings me morning coffee in bed. I'm pretty sure I could audition for the role of a mummy in a low-budget horror movie right now.

(8:30 AM)

The bathroom becomes a high-stakes obstacle course as I gingerly step into the shower, clinging to the glass screen like it's a lifeline.

(9:00 AM)

My socks feel like elusive prey, my jeans seem to have a personal vendetta against me, and my sweater decides to defy fashion norms by going on backwards. It's the latest trend, trust me!

(9:30 AM)

As I shuffle to my desk, my fingers protest against typing. My glasses do the "slip and slide" down my nose, and I look like a perpetually surprised librarian. End up sitting for too long as I forget to get up and move – now I'm stuck.

(11:00 AM)

My attempt at breakfast resembles an episode of a culinary sitcom. Each bite is an unexpected twist in the plot, and I've become the star of my very own cooking disaster show.

(12:00 PM)

Walking the dog feels like an audition for "UK's Wobbliest Home Videos." Picking up dog poop in a howling gale with a mischievous plastic bag is fun.

(1:00 PM)

Back to work, where my fingers continue to stage a rebellion. It's like my keyboard is playing a prank, randomly rearranging letters.

(2:00 PM)

Housework is a laughable endeavour. Each chore becomes an impromptu dance routine, and I'm pretty sure my vacuum cleaner is plotting against me.

(3:00 PM)

The teenager comes home from school with more drama than a soap opera. I do my best to offer sage advice while secretly wondering if my life could be a sitcom.

(4:00 PM)

I embark on an hour of exercise. Stumbling over my own feet tripping over my yoga mat and miraculously avoiding catastrophe.

(6:00 PM)

Dinner preparation feels like an episode of "Chopped," except the secret ingredient is "spoons that won't cooperate."

(8:00 PM)

Finally, I sit down with a glass of wine, hoping it will wash away the day's mishaps. I'm pretty sure the wine glass has a vendetta too, as it tries to escape my grip.

(8:30 PM)

As I settle in to relax in the evening, dystonia decides to make a surprise appearance, turning what should be a peaceful moment into a chaotic contortionist act. My limbs have a mind of their own, performing involuntary dance moves that would make even the most skilled breakdancer jealous.

(10:00 PM)

Bedtime involves a comedic battle with my clothes, which seem to have a secret plan to resist removal.

On a serious note, I will film a proper day in the life for the next letter.

Cheers! 🍷