Parkinality columnist Julie Walker hoping to have deep brain stimulation in battle with Parkinson's disease

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

Don't be alarmed if one day you see me skipping down the street with drawings of rabbits on my shaved bald head*. I hope it will be because I have successfully had brain surgery – an advanced treatment for Parkinson's disease (PD).

I'm sure even the most patient, empathetic reader of my Parkinality column will have started to wane. Over eight years of dyskinesia, dystonia and degeneration, and PD still has no cure, but I'm currently being assessed for my suitability to have deep brain stimulation (DBS).

First used to help PD in the 1980s, the European Parkinson's Disease Association defines the DBS therapy as using "a small, pacemaker-like device to send electronic signals to a precise area in the brain that controls movement via very thin wires. Stimulation of these areas appears to block the brain messages that cause disabling motor symptoms and so can provide greater symptom control".

The aim is to allow me to shop without dropping and to write without wobbling. It should enable me to reduce the amount of medication I take, lessening the side effects.

It is not a cure and, in time, my medication will need to be increased again. However, in the short term it could give me a few years of improved dancing and dusting. The decision to have brain surgery is not made lightly. I'm currently being assessed to see whether I am a candidate for surgery.

I needed to have a motor skills assessment to assess my movement when I'm switched off (unmedicated) and on (medicated). I've taken PD medication 24/7 for over seven years and being unmedicated was a real concern as I didn't know what would happen.

It is vital that the reduction of medication is gradual and carefully supervised by my PD nurse. It would be extremely dangerous to stop medication abruptly, without specialist guidance.

I took my last tablet at 5am on the day of the assessment and by 8am I was depleted of drugs – switched off. Thankfully the car journey to hospital, although difficult, was relatively uneventful.

In the waiting room, unrestrained by medication, it was party time for PD symptoms. This was definitely an example of 'don't judge a book by the cover'; on the outside I was a disaster novel, but on the inside I was still me.

Desperate not to be judged by the other patients, I tried to explain that I wasn't always like this. When I write 'explain', I mean shouting and slurring, whilst simultaneously rigid and writhing, muscles contorting and my face gurning with dystonia.

Finally, my neurologist wheeled me into the consulting room. I was put through a series of physical tests, including walking and standing. Unmedicated they were incredibly difficult or, in some cases, impossible.

I was videoed for the assessment – apologies to the 'bleep' operator. I was allowed to take my medication over lunch and I gradually switched back on. Now fully medicated, I was reassessed and I found the same simple tests simple.

Next was a brain inspection. I was apprehensive about an MRI scan during the pandemic, however the waiting room was empty and Covid rules were adhered to.

The scan was noisy, a bit like being in a rubbish Space Invaders game. Forty minutes of scanning where, for some unknown reason, I sang Knees Up Mother Brown whilst imagining I was shooting aliens. This distracted me and probably amused/concerned the nurse who was operating the MRI scanner.

Other assessments included wearing a special watch (probably not the technical name) which monitored my on/off times and sleep patterns. I also had to do mental arithmetic, written tests and complete forms about my non-motor symptoms.

I will find out soon whether I am suitable for DBS surgery (the pandemic will inevitably delay any surgery). Fingers crossed.

The picture above is a cartoon of me using music to get moving from the Parkylife website, which was set up by Matt Eagles, who was diagnosed with PD at seven – yes, seven years old.

Now 52, he has had DBS and is an advocate for living positively with PD. Take a look at his website at www.parkylife.com.

Stay safe.

* Why would I draw pictures of rabbits on my shaved head? Because from a distance they would look like hares.