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Charity quiz night at The Wheatsheaf pub in Bishop's Stortford on Thursday April 6 to fundraise for Parkinson's UK ahead of World Parkinson's Day





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

Remember the old adage about the swan gliding elegantly on the surface of the pond whilst its legs are going mad under the water? Well, over the past few months I have been less like an elegant swan on a pond and more like a mad giraffe in a washing machine.

I've been beside myself on the inside, being thrown this way and that way, never knowing which way is up. On the outside I've been rumbling along, reaching warp speed when the spin cycle begins and Parkinson's disease (PD) symptoms break through.

Julie Walker has been " less like an elegant swan on a pond and more like a mad giraffe in a washing machine" in recent months. Pictures: iStock
Julie Walker has been " less like an elegant swan on a pond and more like a mad giraffe in a washing machine" in recent months. Pictures: iStock

You might have noticed that my past couple of columns haven't mentioned THE brain op. This is because I had a bit of concerning news and it has taken me a few months to get my head around it (pun intended).

In November, four months had passed since THE brain op and I was back in hospital. Why? Well, what I needed like a hole in the head was a hole in the head, but that's what I got. The skin on my scalp hadn't knitted together properly and there was a tiny hole, the size of a pencil point, which was open to the elements and threat of infection.

After mentioning it to my specialist DBS (deep brain stimulation) nurse, I was readmitted to hospital to have emergency surgery and - look away if you're eating your Shreddies - have the area opened up, cleaned, swabbed and restitched. I was then prescribed a six-week course of antibiotics.

This time, rather than a full head shave, just a wedge was shaved out of my hair, making me look less like a youth with a skinhead and more like a little old man with a comb over.

I have been holding my breath waiting for the results which will tell me whether I have an infection. As this is not a whodunnit - and breath holding is not, at the time of writing, a Parkinson's skill - the swabs taken from my scalp showed there was an infection in my head. They were relatively confident that the antibiotics were the correct kind to sort this out.

My neurosurgeon was happy with the way my scalp was healing at the beginning of January, but I have to go back in a few months to get it assessed again. As he said, "we are not out of the woods yet".

I have also been to see my neurologist this month. He logged on to the device under the skin on my chest by Bluetooth via his laptop. He adjusted the settings in an attempt to improve my symptoms, particularly the huge tremor I have developed in my left arm post-op. This was combined with advice on changing my medication slightly to complement the new settings.

Parkinality columnist Julie Walker. Pic: Vikki Lince
Parkinality columnist Julie Walker. Pic: Vikki Lince

It is not an exact science and a small tweak in medication and settings can make a difference either way. So I will try out the new medication and setting regime for three months to allow them to settle down and see if they make a difference.

THE brain op is still a work in progress. There are no blood tests to ascertain how things are going. Disappointingly, having initially reduced my medication I have now increased it again, in a different drug combination, to higher levels than pre-op.

The good news is that I have had fewer side effects to the medication in the form of dyskinesia (continuous movement). However, I am still getting the huge debilitating swings between being 'on' (when symptoms are under control) and 'off' (when symptoms break through). Also, the dystonia (involuntary clenching and twisting muscle spasms) since the op hasn't been in my feet. It has 'just' been in my face.

Apologies if facial dystonia hits when I am walking in town and I accidentally gurn at you in the street, I really meant to smile (unless I didn't).

World Parkinson's Day is coming up on Tuesday April 11 and The Wheatsheaf in Bishop's Stortford will be fundraising for Parkinson's UK at its charity quiz a few nights earlier on Thursday April 6.

It is open to teams of between two and six, with entrance costing £3 per person. Anyone who would like to book a place should contact the Northgate End pub direct.

Over and out.



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