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The Parkinality Poet Julie Walker on postponement of brain operation using deep brain stimulation (DBS)

Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

For me, May quickly turned into an A to Y of emotions (no zebras yet). From agitated to anxious, hovering over hysterical, through to yikes.

I was finally given a date for my brain operation using deep brain stimulation (DBS) – electrodes implanted into my brain during a seven-hour operation. It is not a cure and Parkinson’s disease (PD) will continue to degenerate. However, one of the aims is to temporarily reduce my medication which might lessen their debilitating side effects.

As I am still not medically trained I will let Parkinson’s UK explain. You can read more at www.parkinsons.org.uk.

Prose has escaped me at this stressful time, so forgive me whilst I resort to rhyme...

I just want to get on with the show.

The theatre’s booked, the hats are packed.

Musical or whodunnit? No, nothing like that.

In the theatre I plan to sleep, throughout the ‘show’.

Don’t tell me the plot, I really don’t want to know.

After surgery I don’t intend painting the town plain red.

Hopefully it’ll be multicoloured, with polka dots instead.

I’d love to eat what I want, then give a cheeky wink.

I’d like to walk without looking, the worse for drink.

Periodically paranoid.

Occasionally optimistic.

I’m impatient to live my life.

I just want to get on with it.

The Parkinality Poet

Spiralling emotions combined with a whirlwind of organisation made the perfect storm. During May I attempted to plan for every eventuality, from the depressing to the essential, from the sensible to the ridiculous.

In my brief moments of calm clarity, the operation is a no brainer (punny). I am being offered an incredibly specialised procedure which could improve my quality of life for a short while.

There are no guarantees that the operation will happen until it’s happened. There are also no guarantees how the surgery will affect my symptoms. So many unknowns which are out of anyone’s control.

After pre-op checks and a Covid PCR test, followed by 72 hours of isolation, the day of surgery finally arrived. I will cut the waffle and get to the point.

10pm – packed my hospital bag.

11pm – repacked my hospital bag.

Midnight – last morsel of food consumed prior to fasting before operation.

3am – transferred my repacked bag into another bag.

7am – arrived at hospital.

8am – pre-op chat.

Mid-morning – operating theatres reprioritised for immediate emergency surgery.

12.30pm – my DBS operation postponed.

Ben’s Round

Grabbing hold of the door frame, Ben attempts to steady himself.

Putting one foot in front of the other, grabbing hold of a shelf.

Pulling himself forward, moving all over the place.

Launching himself at the bar, an odd look upon his face.

The bar staff glance at each other, Ben attempts to order a beer.

He knows what they are thinking; ‘We’ve got a right one ‘ere’.

Staggering across the room, like a small boat out at sea.

Muttering to the bouncers, ‘Take your eyes off of me’.

Julie Walker and her partner Andy Johnson on a visit to the pub, which is the setting of her poem Ben's Round
Julie Walker and her partner Andy Johnson on a visit to the pub, which is the setting of her poem Ben's Round

Attempting a shadow punch, to wind the bouncers up.

Looking like he’s dusting, rather than giving someone a thump.

Ben once carried a round, back from the bar for a laugh.

By the time he reached the table, everyone had ended up with half.

We’d love to be still, to simply sit.

We’d love to enjoy a whole drink, rather than wearing most of it.

PD saves us money, we’re hardly ever allowed to buy a round.

People seem to prefer a pint in their glass, rather than soaked into the ground.

The Parkinality Poet

The chain of events which led to the postponement of my surgery was outside everyone’s control. My operation was elective and not an emergency. There were people who needed surgery right then.

The NHS is an amazing place. Dedicated staff greet people with a smile, often in impossible circumstances. They are all unflappably flexible, their days spent repairing humans and releasing them back into society.

My bag will remain packed ready for a rescheduled date.

Thank you to family and friends, old and new, for their amazing patience and unfaltering support.

‘With a jump to the left and a step to the right ...’

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