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Bishop's Stortford Independent's Parkinality columnist Julie Walker on preparing to be 'switched on' after deep brain stimulation operation for Parkinson's disease

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

Scarves, to cover my post-operative scars, turned out to be like an apple pie; hot and difficult to tie stylishly on my head. I hope that anyone who saw me remembered not to judge this book by its cover. Despite my scarred and shaved head, I can assure everyone that I’m not about to cause an affray.

Whilst asleep in surgery having my brain operation using deep brain stimulation (DBS), the Head Fairy left two boxes of equipment and instructions in preparation for the switch on. People have asked what I mean by being ‘switched on’. It is literally that – I have a rechargeable handset which my consultant will connect by bluetooth to the battery pack under the skin on my chest and I will be switched on. Once switched on and programmed I will be able to adjust the settings in order to control the electrodes in my brain.

As with everything Parkinson’s, programming is not an exact science. There is no blood test to monitor how my body is responding. It will depend on me articulating to my consultant how my symptoms, hopefully, change and evolve when I adjust the machine and my medication. So programming is likely to take several visits.

I will be seeing my consultant in this month to give my brain time to recover from the operation. I’d been told that the post-operative swelling sometimes has a positive effect on symptoms prior to switch on, but that as the swelling goes down any effect is likely to reduce (I don’t know why either).

At the time of writing, I’ve had a couple of weeks free from debilitating dystonia (involuntary twisting and clenching of muscles). Dystonia is a disease in it’s own right which I happen to have as well. I’m not pernickety – if DBS wants to get rid of other ‘annoyances’, I can provide a list.

Julie Walker and her partner Andy Johnson, AKA the wiseish man, at Stortford Heroes: Party in the Park Picture: Vikki Lince
Julie Walker and her partner Andy Johnson, AKA the wiseish man, at Stortford Heroes: Party in the Park Picture: Vikki Lince

Post op I also needed to reduce my medication very slightly. As with all positives there has to be a negative – I seem to have developed an intermittent, but extraordinary, tremor in my left hand. Medication is now back to pre-op levels and the dystonia has returned. *Insert preferred expletive*. I must remember to remain positive.

To add complications to the insult which is Parkinson’s disease (PD), regular readers will be aware that I also live with Crohn’s disease. The fortnightly injections which manage my Crohn’s by suppressing my immune system had to be paused prior to the brain surgery. My body needed every bit of immunity to fight any risk of infection from the operation. The Crohn’s, briefly released from the constraints of medication, had started to kick off. I am now back on the injections and reining back in the Crohn’s.

To be absolutely fair, this column should alternate between being called Parkinality and Crohn’sinality. However, a record of the frequency and consistency of my poo does not have the same opportunities for humour as will she/won’t she be able to walk across the room. Okay, maybe it does.

My head had another outing, this time sensibly covered by a hat to protect my scalp from the sun, when we went to Stortford Heroes: Party in the Park in Sworder’s Field. It was very well organised and we took advantage of the offer of extra assistance. They allowed us to drive into the field, where we were looked after by the brilliant volunteers. It was an opportunity for my youngest daughter and I to groove to The Hoosiers, who we had watched in almost the same spot 10 years ago at Cazfest.

The recent high temperatures played havoc with my PD medication and my symptoms went haywire. It is important for everyone to stay out of the sun and hydrated. You can find out more at www.parkinsons.org.uk/information-and-support/keeping-cool-summer.

P.S. I have written before about there being more than one victim in a Parkinson’s diagnosis. There is also more than one victim in a DBS procedure.

Thank you in particular to my daughters, who have been amazing supporting me through all the ups and downs of living with PD. Thank you also to the wiseish man for his patience and wise moments, supporting me when I am a particularly Paranoid, soon to be, Android.

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