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How paranoia after my brain surgery ‘replay’ hit me on a trip to the seaside

The Indie’s Parkinality columnist, Julie Walker, writes not about parking but about living with Parkinson’s disease

I have been like a game of football since my eight hours of Deep Brain Stimulation (DBS) surgery in June 2022.

No keepie uppies or penalties were involved. More of an uncertain game of two halves.

Julie after her initial surgery in 2022
Julie after her initial surgery in 2022

Regular readers will know that the right half of my body had responded well to the operation, but my left side refused to 'play ball'. It didn't react to being programmed and I developed a major tremor in my left arm which I didn't have before the operation.

It took two scans and around a year to discover that one of the electrodes had moved (the one which controlled the left side of my body) and was 1.5cm out of place.

So on July 6 this year – a year and nine days after the initial DBS surgery – I had another bout of brain surgery to reposition the stray electrode.

Julie on her recent trip to the seaside
Julie on her recent trip to the seaside

Again, like last time, I have nothing to report about the procedure, having slept through the four hours of surgery. I also have no recollection of the post-operative hours and I must apologise for anyone I rambled to on the telephone.

Apologies also to my long-suffering daughter, who I asked to read a selection of my poems to the wonderful nurses, as I could neither read nor speak clearly. Again, like last time, I was out of the hospital the next day.

I had been incredibly careful following the initial operation. However, as I didn't know how or why the electrode had strayed from its position, this time complete paranoia set in.

I simply sat for the first fortnight. After which I carefully ventured out. Even fitting in a short break to the seaside.

Bumpy road ahead after second surgery
Bumpy road ahead after second surgery

However, paranoia followed me on my travels. On a day out on the 2p machines on the pier at the seaside we were queuing for the dodgems.

I turned to The Wise(ish) Man and announced I was irrationally worried about the effect the bumping might have on my brain.

Stepping to one side, we let a small boy through, who, when we said we weren't going on the dodgems, took one look at us and said 'You're too old for the dodgems'.

Six weeks after surgery I went to see my neurologist. He not only answered my burning question about the dodgems – yes, I can go on them – but he also programmed me and this time both sides appeared to respond to the stimulation from the electrodes deep in my brain. So, fingers crossed, the electrode will remain in situ. I will need to return several times to get the optimum effect from the programming.

If I understand it correctly, over time the DBS machine will carry on working, however my Parkinson's disease (PD) will continue to deteriorate.

In the short term the DBS should allow me to reduce the amount of tablets I take. I should then have some brief respite from the debilitating side effects which come with taking large amounts of medication. However, in time, as PD gets worse, I will need to increase my meds again and the side effects are likely to return.

In short, DBS is not a cure. I will still have PD. I will still have PD symptoms. I will still be unreliable and unpredictable. I will still switch on and off.

As, in my opinion, I speak clearer in rhyme, here is a short ode.

DBS is not a cure that is true,

It's like putting a sticking plaster on a tiger in a zoo,

It still lashes out, leaving havoc in its wake,

PD will never give in, it will continue to take, take, take.

The Wise(ish) Man has shown me how to handle this thing,

But deep down we know we can never win,

However, with my demure(ish) smile and his quick(ish) wit,

We both know we will never ever quit.

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